Global Perspectives on Disability Activism and Advocacy: Our Way 9780815376491, 9781351237499

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Global Perspectives on Disability Activism and Advocacy

This book explores the diverse ways in which disability activism and advocacy are experienced and practised by people with disabilities and their allies. Contributors to the book explore the very different strategies and campaigns they have used to have their demands for respect, dignity and rights heard and acted upon by their communities, by national governments and the international community. The book, with its contemporary global focus, makes a significant contribution to the field of disability and social justice studies, particularly at a time of major social, political and cultural upheaval. Global Perspectives on Disability Activism and Advocacy offers a significant intervention within the field of disability at a time of major social upheaval where actors, advocates and activists are seeking to hold onto existing claims for rights, equality and disability justice. Karen Soldatic is an Associate Professor, School of Social Sciences & Institute Fellow, Institute for Culture and Society, Western Sydney University. She was  awarded a Fogarty Foundation Excellence in Education Fellowship for 2006–2009, a British Academy International Fellowship in 2012, a fellowship at The Centre for Human Rights Education at Curtin University (2011–2012), where she remains an Adjunct Fellow, and an Australian Research Council DECRA Fellowship (2016–2019). Her research on global welfare regimes builds on her 20 years of experience as an international, national and state-based senior policy analyst, researcher and practitioner. She obtained her PhD (Distinction) in 2010 from the University of Western Australia. Kelley Johnson holds honorary professorial appointments at Deakin University and University of New South Wales (UNSW) in Australia. She is an internationally known scholar who has been a researcher and advocate with disabled people for more than 20 years in Australia and internationally. Her recent previously held positions include Director, Social Policy Research Centre at UNSW, and Director of the Norah Fry Research Centre in Bristol, UK. Kelley has an ongoing commitment to inclusive research which involves disabled people undertaking research on issues that are important in their lives. Her research interests include deinstitutionalization, community participation of disabled people, sexuality and relationships, and rights with a particular focus on the Convention on the Rights of Persons with Disabilities.

Interdisciplinary Disability Studies Series editor: Mark Sherry The University of Toledo, USA

Disability studies has made great strides in exploring power and the body. This series extends the interdisciplinary dialogue between disability studies and other fields by asking how disability studies can influence a particular field. It will show how a deep engagement with disability studies changes our understanding of the following fields: sociology, literary studies, gender studies, bioethics, social work, law, education, or history. This ground-breaking series identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice and methods. Disability and Neoliberal State Formations Karen Soldatic Manifestos for the Future of Critical Disability Studies Volume 1 Edited by Katie Ellis, Rosemarie Garland-Thomson, Mike Kent and Rachel Robertson Interdisciplinary Approaches to Disability Volume 2 Edited by Katie Ellis, Rosemarie Garland-Thomson, Mike Kent and Rachel Robertson Disability and Social Representations Theory The Case of Hearing Loss Vinaya Manchaiah, Berth Danermark, Per Germundsson and Pierre Ratiaud Identity (Re)constructions After Brain Injury Personal and Family Identity Chalotte Glintborg Global Perspectives on Disability Activism and Advocacy Our Way Edited by Karen Soldatic and Kelley Johnson For a full list of titles in this series, please visit www.routledge.com/series/ ASHSER1401

Global Perspectives on Disability Activism and Advocacy Our Way

Edited by Karen Soldatic and Kelley Johnson

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, Karen Soldatic and Kelley Johnson; individual chapters, the contributors The right of Karen Soldatic and Kelley Johnson 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: 978-0-8153-7649-1 (hbk) ISBN: 978-1-351-23749-9 (ebk) Typeset in Times New Roman by Deanta Global Publishing Services, Chennai, India

For Helen Errington and Daisy Serong, whose lives as advocates influenced the way we thought about social change and justice.

Contents

List of contributors Acknowledgements 1

x xvi

Introduction: Doing it our way: Disability, activism and advocacy 1 KAREN SOLDATIC AND KELLEY JOHNSON

PART I

Remembering and remembrance 13 2

‘We’re being treated as second-class citizens’: Community, family and learning disability activists campaigning for dignity in death 15 NIGEL INGHAM

3

‘Madhouse’: Performance artists with learning disabilities sharing the history of institutions 35 SUE LEDGER AND JAN WALMSLEY WITH MEMBERS OF ACCESS ALL AREAS

4

The importance of disabled people being seen on our screens 52 SARAH BARTON

5

Advocacy from within 66 MOIRA RAYNER

PART II

Movement organizations and leadership 81 6

Action makes a difference: Creating inclusive spaces through advocacy work in Sāmoa 83 JULIANN ANESI

viii Contents   7 Kamalawathie: Gender, disability and leadership in Sri Lanka 97 NIROSHINI KANDASAMY AND KAREN SOLDATIC

  8 Research, advocacy and activism: A necessary interaction?

114

KELLEY JOHNSON, ROB HOPKINS AND GERARD MINOGUE

  9 Peer education: A platform for sexuality rights advocacy for women with intellectual disabilities 126 PATSIE FRAWLEY AND AMIE O’SHEA

PART III

Activism across multiple identities

143

10 Our lives, our story: The journey of the voiceless towards advocacy in Nepal

145

PRATIMA GURUNG

11 Sex trafficking, activism and disability 161 MARK SHERRY

12 The onset of austerity in the United Kingdom and start of a disability activism 179 ELEANOR LISNEY

13 Queer-crip.blog: A virtual ethnographic comparison of social media movement-building techniques used by queer and disabled activists 193 ZAHARI RICHTER

PART IV

Agitating the state 203 14 Disability masked avengers: The Bolshy Divas 205 KATIE ELLIS

15 Advocacy in Jordan: A paradigm shift from the medical model to the rights-based approach 221 MUHANNAD ALAZZEH

Contents 

ix

16 Transforming disability law and policy in Peru: The role of civil society 232 ALBERTO VÁSQUEZ ENCALADA

17 The fight to be steadfast: Bolivian disability activists

245

MARIANNE HEDLUND

PART V

Working transnationally 261 18 Advocating for independent living in the European Union: Where there’s money, there’s a way? 263 INES BULIC COJOCARIU

19 Towards an Afrocentric disability activism: Opportunities and challenges of transnationalizing disability advocacy in Africa 281 PRIVILEGE HAANG’ANDU

20 Troubling activisms: Canada and transnational disability activism 298 DEBORAH STIENSTRA

21 When academia meets activism: The place of research in struggles for disability rights 315 PAULA CAMPOS PINTO



Conclusion 328 KELLEY JOHNSON AND KAREN SOLDATIC

Index

335

Contributors

Access All Areas (www.accessallareastheatre.org) makes urban, disruptive ­performance by learning-disabled and autistic artists. As well as mounting professional touring productions through our performance company, we run a range of exciting and innovative projects for people with a broad range of learning disabilities. We believe passionately in the importance of including learning-disabled artistic voices at all levels of society to help create an artistic community that is made more vibrant, more varied and more relevant by including a range of voices. We have an industry-first partnership with the agency Simon & How to represent seven professional actors with learning disabilities. Recent productions include ‘The Misfit Analysis’ by Cian Binchy, a multimedia satirical exploration of how society treats people with autism, touring nationally in the UK and described as ‘utterly fascinating and wildly creative’ by Lyn Gardner of the Guardian. Access All Areas runs the Royal Central School of Speech and Drama’s Performance Making Diploma for adults with learning disabilities, which has given a unique perspective on mentoring learning-disabled artists through their professional work. The diploma has been credited with ‘the power to change theatre’, and in 2015 it won the Guardian Award for student diversity. Muhannad Alazzeh has a PhD in criminal law and bioethics, and a postgraduate diploma in public policy, good governance and anti-corruption from the International Institute for Social Studies (ISS) in The Hague, Netherlands. He is a human and disability rights defender, chief editor for the first shadow report on the implementation status of the Convention on the Rights of Persons with Disabilities in Jordan, the first senator with a disability in the Jordan senate 2013–2016, the chairperson of the legal committee which drafted the new law on the rights of persons with disabilities in Jordan, secretary general of the Higher Council for the Rights of Persons with Disabilities, and an international commissioned legal and human rights expert. Juliann Anesi is Assistant Professor of Gender Studies at UCLA. Her research interests focus on Indigenous disabled women and social movements in Sāmoa and the broader Pacific region. Juliann is a board member of the Critical Ethnic Studies Association and has worked with non-profit organizations and

Contributors 

xi

schools in American Sāmoa, California, Hawai’i, New York and Sāmoa. She is developing a book manuscript, Women’s Tautua: Disability Advocacy and Education in Sāmoa. Sarah Barton is a 2010 Churchill Fellow and has more than 20 years’ experience as a filmmaker, mainly in documentary. Her first film, Untold Desires (1994), about sexuality and disability, won the first Logie Award for SBS television and an AFI Award for most outstanding documentary. In 2003, Sarah created and produced the first 70 episodes of the award-winning disability community television series No Limits. Between 2011 and 2015, Sarah worked as chief executive officer of Disability Media Australia. Her short documentary Stroke A Chord (2012) was a finalist in the ATOM Awards in 2013. In 2013, Sarah co-wrote and directed the short comedy Casa Del Crip and in 2014 she cocreated and performed in comedy sketches for the series What’s Wrong With You? In 2017, Sarah’s feature documentary, Defiant Lives, about the disability rights movement premiered at the Sydney Film Festival and also screened at the United Nations in New York. Ines Bulic Cojocariu is Deputy Director at the European Network on Independent Living (ENIL). Since 2005, when she was appointed the Coordinator of the European Coalition for Community Living (ECCL), her work has focused on the right to independent living, deinstitutionalization and the use of European Union (EU) funds. She has written or contributed to a number of publications, policy papers and manuals on these topics, and regularly delivers training on how to move away from institutional care and implement Article 19 of the UN Convention on the Rights of Persons with Disabilities. Ines has an MA in Human Rights from the Central European University in Budapest (2002/2003) and has previously worked at Amnesty International Croatia. Originally from Croatia, she has been based in the UK since 2008, where she lives with her husband and two children. Katie Ellis is Associate Professor in Internet Studies and Director of the Centre for Culture and Technology at Curtin University, Australia. Her research is located at the intersection of media access and representation. She is the author or editor of 20 books on the topic of disability, the media and popular culture, including most recently Disability and Digital Television Cultures (2019, Routledge) and, with Mick Broderick, Trauma and Disability in Mad Max: Beyond the Road Warrior’s Fury (2019, Palgrave). Patsie Frawley is Course Director in the postgraduate Disability and Inclusion programme at Deakin University, Geelong, Australia. Patsie’s research focuses on sexuality and relationships in the lives of people with an intellectual disability using inclusive research approaches. She developed and manages the Sexual Lives and Respectful Relationships programme that has been running in Australia since 2009. This is a peer-led, rights-based sexuality programme that engages with community sexual health and sexual abuse programmes to provide people with an intellectual disability the opportunity to transform the

xii Contributors way they understand and engage with their sexuality and relationship rights and experiences. Patsie has published on inclusive research methods with people with intellectual disability, sexuality and relationships, and self-advocacy. Pratima Gurung is a faculty member in Padma Kanya College, one of the women’s colleges at Tribhuvan University in Nepal. She completed her MPhil pursuing disability in her research in 2010 and now she is pursuing her PhD on intersections of gender, disability and indigenous issues. She is a leading academic activist nationally and internationally. Her work focuses on research and advocacy on gender, disability, indigeneity and marginalized issues. She is associated with a number of women’s organizations nationally and globally and has contributed advocacy to her work with relevant stakeholders, including community peoples, academia, government and the United Nations. Privilege Haang’andu is a PhD student at the University of Saskatchewan, Canada, in the Johnson-Shoyama Graduate School of Public Policy. He also teaches Canadian Public Policy in the Political Studies Department at the University of Saskatchewan. His research focuses on comparative transnational policy activism in southern Africa. He is also interested in the intersectionality of disability and HIV/AIDS as well as in the social impact of negative disability framing on families of children living with disabilities. Privilege has published on a range of topics, including democratization, environmental justice and socio-economic inequality. Privilege is an ardent human rights advocate. He holds a Master in Political Science from Marquette University in Wisconsin and a Bachelor in Political Philosophy from the University of Zimbabwe. Before starting his doctoral studies, Privilege worked for several years as a governance adviser at the United States Embassy in Lusaka, Zambia. Marianne Hedlund has a PhD from Lund University in Sweden. She works as a full-time professor in Society & Disability at Norwegian University of Science and Technology (NTNU) in Norway. She is also adjunct professor in Health Science at Nord University. Her research interest is inequality and marginalization of persons with disability, health, inclusive working life, and welfare state and disability studies. She is president of the Norwegian Network of Disability studies (NNFF) and active in several research networks on disability and rehabilitation. She has broad research collaborations with networks and universities in Latin America, India, Australia, USA and UK. She teaches and advises students at undergraduate and graduate levels as well as PhD programmes. Rob Hopkins completed his MSc in Inclusive Research Theory and Practice at the Norah Fry Research Centre, Bristol University, UK. He is an Inclusive Research and Self Advocacy Officer for the Brothers of Charity Mid West Services in Ireland, supporting self advocacy locally, regionally and nationally. Rob uses his skills as a social drama activist to support self advocacy and campaigns, and to promote the findings from research undertaken by people with intellectual disabilities. He coordinates the Clare Inclusive Research Group and is a team supporter of the national Inclusive Research Network.

Contributors 

xiii

Nigel Ingham is a Visiting Research Fellow at the Open University. He has a background in informal education, combined with life-long research and professional involvement in community oral history and the social history of learning disability. Nigel has set up and led projects on the oral histories of those who lived, worked or had relatives in former large long-stay institutions in North-West England and Scotland. In 2012, he was awarded his PhD with the Open University for an oral history study into the intricate process of running down a long-stay hospital for people with learning difficulties. Niroshini Kandasamy is a final-year doctoral candidate in the School of Historical and Philosophical Studies at the University of Melbourne, Australia. Her dissertation examines the life stories of Sri Lankan Tamils resettled in Australia as children in the 1980s and 1990s, by focusing on the role of memory in their constructions of belonging. In 2018, she was a student visiting fellow at the Refugee Studies Centre at the University of Oxford. Her research interests include post-conflict Sri Lanka, refugee studies, disability studies and welfare service provision. She aspires to continue engaging with minority groups in her capacity as an activist and scholar. Sue Ledger is a Visiting Research Fellow at the Open University, UK. A member of the international Social History of Learning Disability Research Group since 2000, she has co-researched with people with learning disabilities on a range of projects, including institutional history, songs of resistance, life stories and map-making, sexuality and relationships, contraceptive decision-making and local community-based support. Sue combines an academic background in psychology with over 20 years’ experience in the leadership of health, social care and advocacy support for children and adults with learning disabilities. She is a registered practitioner with the UK Health and Care Professions Council. Eleanor Lisney is a campaigner, founding member, public speaker and coordinator of Sisters of Frida, a disabled women’s collective. She is an access adviser, an aspiring creative practitioner and co-founder of Culture Access CIC, which is about supporting access and bringing an inclusive edge intersectionally. She was born in Malaysia and has lived in Strasbourg, France, and has studied in Austin, Texas. She has written for Media Diversified and is passionate about embedding intersectionality in all her work. She has two grown-up children. Gerard Minogue has completed courses in Advocacy and Citizenship at University College Dublin, Ireland. He is a self advocate and inclusive researcher with a commitment to using research carried out by people with disabilities to gain social change, rights and respect. Gerard is a founding member of the Clare Inclusive Research Group and the national Inclusive Research Network. He has represented these organizations to policymakers and to government members, particularly on repealing the discriminatory 1993 Criminal Law (Sexual Offences Act) and in taking action on the reservations expressed by the Republic of Ireland in its ratification of the Convention on the Rights of Persons with Disabilities.

xiv Contributors Amie O’Shea is Research Fellow in the School of Health & Social Development at Deakin University. Amie’s research and teaching takes a poststructuralist approach to sexuality and gender for people with intellectual disability and continues the search for meaningful and collaborative research methodologies. As the National Co-ordinator for Sexual Lives & Respectful Relationships (SL&RR), a peer-education programme for people with intellectual disability, Amie is committed to sexuality rights and the prevention of violence against people with intellectual disability. Amie is a committee member of Rainbow Families Victoria and has also worked with the Gay & Lesbian Foundation of Australia and Inclusion Melbourne to pilot SL&RR for lesbian, gay, bisexual, trans*, intersex and queer people with intellectual disability. Paula Campos Pinto holds a PhD in Sociology from York University, Toronto, Canada, and an MSc in Family Studies from University of WisconsinMadison, USA. She is an Associate Professor at the School of Social and Political Sciences of University of Lisbon (ISCSP-UL) and a researcher at the Interdisciplinary Center on Gender Research (CIEG) and the Center of Administration and Public Policies (CAPP). Paula was the founder and is the coordinator of the Observatory on Disability and Human Rights, a platform that brings together academics, disability organizations and decision-makers to support disability research in Portugal. She has been the principal investigator in national and international projects related to disability rights monitoring, social policy analyses and the impact of policy on people’s lives, including from a gender perspective, and is the author of many publications in national and international peer-reviewed journals and books related to disability, gender and human rights. Moira Rayner has an MA in Public Policy and an LLB (Hons). She established her own law firm and lives in Victoria, Australia. She is committed to community and legal advocacy for the human rights of people with a disability and all human beings. She was Victorian Commissioner for Equal Opportunity, Hearings Commissioner of the Australian Human Rights Commission, Acting Commissioner for Equal Opportunity for Victoria, and the first Director of the Office of the Children’s Rights Commissioner for London. She has published widely on human rights, ethics, discrimination and citizenship. She conducts litigation, mediation, conciliation, and training and mentoring to employers. Zahari Richter has an MA and MS and is an artist, activist and PhD student at George Washington University’s Queer Crip Studies centre within the English department. Zahari’s work focuses on queer disability theoretical intersections with phenomenology and cultural history in American contemporary and postmodern fiction and media. In her spare time, Zahari enjoys hiking in nature parks, Pokemon Go and Nintendo Switch. Mark Sherry is a Professor of Sociology at The University of Toledo, USA. His books include Disability Hate Crimes: Does Anyone Really Hate Disabled People? and If I Only Had A Brain: Deconstructing Brain Injury, both with

Contributors 

xv

Routledge. Mark is the Series Editor for the Routledge Interdisciplinary Disability Studies series. His next book is A Sociology of Impairment (Routledge). He has worked with disabled crime victims for many years as well as doing a great deal of community work with brain injury survivors. Deborah Stienstra holds the Jarislowsky Chair in Families and Work, is a Professor of Political Science and the Director of the Centre for Families, Work and Wellbeing at the University of Guelph, Ontario, Canada. She is the author of About Canada: Disability Rights (2012, Fernwood) among many other books, chapters and articles. Her research and publications explore the intersections of disabilities, gender, childhood and Indigenousness, identifying barriers to, as well as possibilities for, engagement and transformative change. Alberto Vásquez Encalada is a Peruvian lawyer and holds an LLM in Disability Law and Policy from the National University of Ireland, Galway. He works as Research Coordinator at the Office of the UN Special Rapporteur on the Rights of Persons with Disabilities. He is also president of the Peruvian NGO Society and Disability – SODIS and a member of the World Network of Users and Survivors of Psychiatry. He has worked at the Peruvian Ombudsman Office and at the Peruvian Congress on disability-related issues as well as being a consultant to a number of UN agencies. Jan Walmsley is a self-employed researcher who has pioneered inclusive research and evaluation. Her main priorities are to support self-advocacy in England and to spread interest in the history of intellectual disabilities.

Acknowledgements

We would like to thank the contributors for taking time out from their advocacy and activism to reflect on their work and lives. We believe their chapters will both inform and support the work of activists, advocates and allies working on the ground striving for socially just change. We would like to thank Kelly Somers for her patience, commitment and meticulous copyediting. We would also like to thank Georgia Priestley at Routledge for her continuing support for this project.

1

Introduction Doing it our way: Disability, activism and advocacy Karen Soldatic and Kelley Johnson

Life always seems to be about fights, settle fights, settle fights and on and on and on and on. It hasn’t stopped since the day I was born, I don’t think. It’s just being aware of what rights you have and what you haven’t. It’s a matter of just standing up and just leaping for it I guess and not being scared to take a stand. I’ve been fighting ever since the day I was born and I’m still doing it. (Amanda Millear with Kelley Johnson 2000, p. 241) We chose this statement by Amanda Millear, who sees herself as having struggled all her life for her rights as a disabled woman, because it encapsulates many of the issues which have led to this book. Amanda’s work as an activist has been a force in her life for many years, during which time the way people with disabilities have been seen has shifted, from people needing medical intervention and care to people with rights who are worthy of dignity and respect in all their humanity. The most notable changes within this shift have been the introduction of anti-discrimination laws in some countries (e.g. the Australian Disability Discrimination Act 1992 and the Americans with Disabilities Act 1990), the movement to deinstitutionalization and the establishment of disability rights in international law via the United Nations Convention on the Rights of Persons with Disabilities (2006). Yet, as Amanda says, and as the contributors to this book illustrate, the fight goes on. The flourishing international research in this area is testament to the continued importance of disability activism and advocacy (Charlton 2000, Zames and Zames Fleischer 2001, Pelka 2012, Block et al. 2016, Kelly and Orsini 2017, Galer 2018). Each work has made a significant contribution to Disability Studies by illuminating the crucial work undertaken by disability activists and advocates. This book aims to build on the knowledge provided by this literature by focusing on the different ways people with disabilities in different cultural contexts have practised activism and advocacy, and mobilized their activist and advocacy tendencies at the international and national level. It also aims to make explicit the different paths taken by people with disabilities on their journeys to becoming advocates and activists. The book, therefore, aims to document the impact of the current wave of mobilizations by disabled people across different nations and internationally, and to demonstrate the importance of remembering the collective struggles of disabled people.

2  Karen Soldatic and Kelley Johnson This book is shaped by a range of questions. These questions emerged from our own engagement in the space of ‘disability’ and our ongoing contact with disabled activists and advocates in our work. How do disabled people see, understand and participate in activism and advocacy? What practices do disabled people use to mobilize for social change? How do disabled people understand the different practices pursued to effect social change and how do they choose the most appropriate path for them? At what moment do they decide the need to move from street-based protest to more formalized activities, and vice versa, including developing disabled people’s representative organizations? What is the role of international organizations and networks in advancing disability activism and advocacy? What are the challenges to achieving and sustaining rights for people with disabilities? What roles do allies of disabled people play in the development of their advocacy and activism? How is the struggle for rights by people with disabilities challenged or supported by different social movements? What considerations come into play when working across differing identity groups? What contribution do disabled people make to these other struggles? What has been the impact of disabled people’s advocacy and activism in achieving positive social change? The book has sought to deepen our understanding of these questions and hopefully to facilitate an ongoing reflexive dialogue between those involved with processes, practices and strategies of disability advocacy and activism.

A personal reflection as editors One of the issues that was at the forefront of our minds as we began thinking through the possibilities of this book was that neither of us identify as someone living with an impairment or as having a disabled subjectivity. Commonly, within the disability movement, we are often referred to as disability allies, that is, people who work ‘alongside’ disabled people with the aim of supporting their individual and collective struggles for respect, dignity and the realization of rights. In acknowledging this role, we are, however, conscious that it is an ambivalent position from the perspective of people with disabilities. While allies are essential to any action that seeks social change, they can also undermine claims for respect, rights and redistribution. The history of people with disabilities is littered with people who saw themselves as benevolent and supportive but who contributed to the oppression and segregation of disabled people. In editing this book, we have hoped to take a self-critical and reflexive position in relation to ourselves and have sought to ensure that our contributors are free to openly advance their positions in relation to their work. It also needs to be stated that, while we do not identify (yet) as having disabilities, we have not been immune from the need to be self-advocates and activists although we are very aware of our relatively privileged positions. In our journeys as women, Karen as the child of migrants growing up in the working-class suburbs of Greater Western Sydney, and Kelley as the child of a rural, working-class, white Australian family, we have inevitably become involved in our own personal

Introduction  3 and collectivist struggles for recognition, respect and dignity. Both of us have been active in seeking to advance our own and others’ rights in a society which remains patriarchal, hetero-normative, racist, ableist and elitist. We concur with Amanda that the struggle for rights, justice and social solidarity goes on.

Activist wisdom and the possibility of social change In 2006, Sarah Maddison and Sean Scalmer, in partnership with those working for socially just change, explored the practical knowledge drawn upon in decision-making, tactics and strategies, and orientations of those commonly defined as advocates and activists. As part of the narrative journey, a range of critical insights emerged that largely appeared to be shared across the life histories of those involved. The aim of Activist Wisdom was to move beyond a focus on a particular social movement, organization, group or person, and to distil the possibility of shared tenets across disparate fields of social movement organizing, to understand how those involved gave meaning to their actions, practices and orientations. Through this process, Maddison and Scalmer illuminated the actual work of socially just transformation and how it is organized and coordinated across individuals, coalitions and movements. Reading this work in the early stages of the formulation of this book played a critical role in how we wanted to frame our invitations to contributors. What we found most curious, and outside dominant social movement literature such as that of Tilly and Tarrow (2015), was that most of the participants involved in the Maddison and Scalmer project overwhelmingly refrained from adopting terms such as ‘activist’, ‘advocate’ or ‘ally’. In a second reading of the work, we would even suggest that many of the participants of the Maddison and Scalmer project actively recoiled from any intentional acts of self-definition along these normative lines. The ‘who they are’, ‘what they do’, ‘why they do it’ and ‘how they do it’ appeared embedded in their political commitments, personal tenacity and strategic practice. Transforming social, cultural, political and institutional spheres, we learn, should not be hampered by prior perceptions of what one is, was or could be but, more importantly, by what one has the power to do (Maddison and Scalmer 2006). Since the release of Activist Wisdom in 2006, there is no doubt that the world has pulled, shifted and rattled, significantly altering the landscape of activism. The global financial crisis and its counterpoint, the 99% Movement (2008), alongside the rise of popular nationalism (Hindu nationalism in India, Trump in the USA and Brexit in the UK, as examples) clearly indicate that progressive activism and advocacy for socially just change has come to a point of crisis. This is particularly the case as traditional strategies of progressive social movements seem to have been actively harnessed to renew and advance highly regressive and conservative political agendas (Gusterson 2017). Global inequality is proliferating and household access to personal resources, supports and services has undergone radical diminution across all regions of the world (Alvaredo et al. 2018). Abject poverty, precarity and dispossession have

4  Karen Soldatic and Kelley Johnson almost become mundane within many parliamentary democracies, alongside the withdrawal of rights, entitlements and redistributive social provisioning with the latest rendition of neoliberal political economic governing – global austerity. The success of politically conservative campaigns illustrates the urgent need to hear and better understand the priorities, tactics, strategies and framing of disability advocacy and activism. We have learned from history how quickly transformative reforms and tactics can be undermined or undone. It is now necessary to ensure that the struggle for disability justice, rights and participatory parity are progressed, despite the significant hurdles that are emerging across the broader political landscape. As editors, we hope this book contributes to this progress. The contributors to this book explore the variegated forms of activist and advocate wisdom that disabled people utilize in their work for systemic change. As the chapters illustrate, disability activists, advocates and their allies engage with a composite set of practices, knowledge of the landscape and rich skill sets. Some of these attributes and skills are gained from experience or from learning about past campaigns, protests and struggles for social change. Some have been learned through experiential processes – getting out on the street, working across and within social movements, identifying opportunities for social change within institutions, and drawing on resources that are readily available and accessible, such as social media platforms. As the contributors to this book demonstrate, being an activist, advocate and/or ally brings together personal tenacity, commitment and a ‘hunch’ of what ‘should be’, coupled with tactical actions that are both learned and experimental in their orientations (Maddison and Scalmer 2006). Concurring with the participants in Maddison and Scalmer’s project, the contributors to this volume write about how they often find themselves in a position where they feel that they must ‘do’ something, contribute ‘somehow’ and ‘become’ involved. The focus is thus a practical orientation to the work that they do to drive social transformation on issues of importance for the struggle for disability justice. Actions, campaigns and tactics can be both expressive and instrumental, depending on the target of their actions and the necessity of the ‘what should be done’ (Maddison and Scalmer 2006, p. 67). While at times this may mean building broadscale alliances within the disability movement, at other times it will mean identifying opportunities to intervene in the campaigns of other social movements to insert disability into their agendas. It often means that in their work they will adopt person-first language – ‘persons/people with disabilities’ – or, at other times, use the term most commonly associated with western disability movements – ‘disabled people’. This orientation towards how to define disability is driven by the context in which activists undertake their activism and advocacy, what they see as the most politically salient for the campaign in which they are involved, or as a personal preference. Given this, our approach as editors is to work in concert with the contributors’ own processes in defining ‘disability’. Therefore, throughout the book, writers often use the terms ‘disabled people’ and ‘people with disabilities’ interchangeably, and do not necessarily understand this as being politically inconsistent in their orientation, but rather as an acceptance of political positions that emerge in their collective work.

Introduction  5 Disability activists and advocates in their strategies and campaigns share a wisdom with other activists, advocates and allies within other social movements (Maddison and Scalmer 2006). Whether it is the moment for reform or for revolution is a question that is answered within the moment. Activists, advocates and allies evaluate not only the potential for redress or change, but to what degree such change can be realized. Is it a step-by-step process of institutional reform with targeted actions, or does there need to be a broadscale public campaign that builds significant public interest in the issue? In navigating the issues as they emerge on the ground, advocates, activists and allies work with a list of questions such as ‘who needs to be influenced?’, ‘how should we frame this issue?’ and ‘how can we give the issue traction?’ As the contributors to this international anthology illustrate, disability advocates, activists and allies often have to make choices within the moment of their organizing. The level of public expression or closed-door negotiations is framed by the issue at hand and the surrounding politics that gives it meaning. Most significantly, as the contributors suggest, disability activism and advocacy is a negotiated process – across disabled people, their allies and networks. Identifying opportunities for social change and the possibilities for intervention are ongoing issues that disability activists, advocates and allies navigate as part of their campaign work. Sharing knowledge, skills, tactics and information, as a form of collective reflexive learning, generates a strategic wisdom to inform future success and socially just transformation (Maddison and Scalmer 2006).

Book themes and structure This book is broken into five parts: remembering and remembrance; movement organizations and leadership; activism across multiple identities; agitating the state; and working transnationally. The structure of the book was generated from the contributors’ interpretative framing of the ‘what is’ disability advocacy and activism as they examined their personal journeys as disability activists and/or advocates, or as narrators of the practices, forms and work of disability activism and advocacy. The contributors’ rich and nuanced engagement with their work demanded from us as editors an ongoing, iterative process of re-reading the individual chapters, as they developed over time, into a collective body of scholarship. The structure of the book emerged through this process, rather than framing the book around editorially imposed themes. Our intention has been to reflect the coherence of the chapters and to highlight their interconnectedness. Part 1: remembering and remembrance It has often been said that those who cannot remember the past are doomed to repeat it. In relation to people with disabilities, the statement gains added force in that until recently their past has been largely unknown and hidden, from themselves and from wider society. This part of the book reinforces the relevance and significance of knowing the past for those involved in advocacy and activism for

6  Karen Soldatic and Kelley Johnson social change today. It is also about remembrance in the sense of respecting and celebrating those who have lived in the past, and acknowledging the critical role of sites of remembrance for understanding past injustices. This is particularly true of the chapter which begins Part 1. Nigel Ingham traces the history and current status of a campaign both to prevent the destruction of and appropriately recognize a cemetery at a former large institution in the UK. His chapter vividly describes how people with intellectual disabilities, families and allies have come together to claim dignity and respect for those who lived their lives and died in the institution. The chapter resonates strongly with Amanda Millear’s statement that the fight for recognition of rights ‘goes on and on and on’. Sue Ledger, Jan Walmsley and Access All Areas’ collaborative chapter continues to focus on the historical importance of geographical sites in raising awareness of the relevance of the past. A group of performance artists with intellectual disabilities, supported by academics and archivists, research the lives of former long-stay hospital residents. Members of the theatre company Access All Areas then responded to learning about institutional history by developing and curating an interactive museum exhibition called Madhouse, My House? The aim was to increase public awareness of the recent and large-scale ‘shutting up’ of people with learning disabilities and to ask how much has really changed in terms of society’s attitudes today. The impact of the exhibition on both actors and museum visitors is explored in the chapter. Sarah Barton also describes how she has used the arts to support disabled people to have a strong public voice in her work as an Australian filmmaker. Her chapter stresses the importance of disabled people being part of films and programmes about their lives. She identifies the historical lack of presence of disabled people in film and the consequences of this absence. The achievements and the challenges of this work over time are analyzed in the chapter. Barton demonstrates how wider economic and social discourses affect the development of a disability culture and discusses the impact on people’s lives of having a stronger presence in film. Moira Rayner provides an account of her work as a lawyer working both inside and outside government to support and claim the rights of people who are marginalized in Australia. It is rare to read an insider’s analysis of the positive aspects and challenges of working as an ally of people with disabilities (and other groups and individuals seeking their rights). Rayner first describes her work as a lawyer in private practice and her realization that this work, while it might succeed in supporting individuals, could not achieve systemic change. Her work as an equal opportunity commissioner brought her into a position where this seemed more possible. In her chapter, she describes the learning she gained in this position in relation to the steps that need to be taken to be effective and also the challenges from within the system to achieving this effectiveness. Part 2: movement organizations and leadership At the centre of disability movement politics and organizing has been the demand of ‘Nothing about us without us’ to redress past injustices and to ensure that

Introduction  7 governments, institutions and politics are inclusive of the demands of disabled ­people. This part examines the role of disabled leaders and their journeys as disabled advocates and activists, and the need for, and processes involved in, developing disabled people’s organizations (DPOs) as an outcome of disability movement mobilization. This section highlights the particularity of disability leadership strategies to advance disability justice claims and the role of DPOs in moving activist platforms to more formalized processes of negotiation, advocacy and lobbying. The first chapter in this section contributed by Juliann Anesi discusses the development of self-advocates in Sāmoa and their journeys in establishing their DPO. Anesi demonstrates the necessity for self-advocates to be grounded within their local socio-cultural context to be able to realize the end goals of their advocacy. Most significantly, Anesi outlines the importance of the ‘intertwined discourses concerning Indigenous understanding of disability, advocacy, and notions of inclusion’ in the actions and end goals of locally oriented and directed disability advocacy. The second chapter by Niroshini Kandasamy and Karen Soldatic builds on the important insights provided by Anesi by exploring the life history of Sri Lankan disabled women’s activist Kamalawathie, leader of the Association of Women with Disabilities Sri Lanka. In undertaking a life history narrative, the authors illustrate how Kamalawathie’s activism and advocacy have emerged from her critical reflections on her own life journey as a rural disabled woman. Kandasamy and Soldatic highlight how disability leaders’ personal reflexive engagement with their own life stories provide them with a repertoire from which they can achieve collective goals. Kelley Johnson, Rob Hopkins and Gerald Minogue explore how a small number of individuals with intellectual disabilities used inclusive research on their way to developing a group which used research for advocacy and activism on issues of concern to them. This case study of the growth of advocacy in the Republic of Ireland demonstrates the importance of people with disabilities being given the opportunity to learn about and to take action on their concerns about rights. The formation of the Clare Inclusive Research Group has made contributions to the rights of people with intellectual disabilities at local, national and international levels. In the final chapter of this section, Patsie Frawley and Amie O’Shea examine the role of peer education as a platform for women with disabilities becoming leaders as disability activists and advocates. Frawley and O’Shea illustrate the ways in which opportunities for developing one’s capacities and capabilities in one area can transfer to broader areas of disability rights-based advocacy, including political advocacy via the realm of parliamentary democracy. Interestingly, this chapter shows how the reframing of personal troubles, such as gendered sexuality rights, can have a political intent and that this is realized through the process of peer education through publicly funded programmes for women with intellectual disabilities. Part 3: activism across multiple identities This part of the book examines the growing activism and advocacy of disabled people who are organizing across different social movements for the recognition

8  Karen Soldatic and Kelley Johnson of complex identities and social solidarity. The authors in this part describe the ways in which their non-disabled identities, such as sexuality, ethnicity and gender, are not recognized within the disability movement, and their experiences of marginalization and exclusion of their disabled identity within other movements. While a growing body of work has sought to illustrate the complex negotiations of everyday life for disabled people at the crossroads of diverse identities, there has been little literature that examines the struggles for recognition by disabled activists and advocates across these multiple spheres. These chapters bring these issues to the fore and show how they are connected to disability, yet remain invisible to dominant disability struggles. Opening this section, Pratima Gurung explores the activism of Indigenous women living with disability in Nepal and their struggles to be represented in the women’s movement, the Indigenous movement and the disability movement. This complex negotiation across the lines of gender, disability and ethno-cultural nationalism has meant that Nepalese Indigenous women with disability have had to mobilize not only across these three movements, but also across differing scales – local, national and international – to put their struggles, issues and concerns for justice on the political agenda. As Gurung suggests, this is particularly the case for Indigenous women living in the Global South, who are also excluded from the global development agenda and the work of international non-government organizations working in disability and women’s development. The next chapter by Mark Sherry is a critical examination of disability and sex trafficking advocacy and activism, and why these two disparate movements have not engaged in joint actions of mobilization. As Sherry documents, women with disabilities from the Global South are highly vulnerable to sex trafficking and able-bodied women who have been trafficked are extremely likely to end up with some type of impairment as a result of this experience. He argues that this raises particular problems for the disability movement, especially in relation to the role of sex workers in facilitating access to sex for disabled men in the Global North. Sherry identifies a number of strategies to build advocacy and activism on this issue for the global disability movement. Eleanor Lisney narrates her personal journey of being a non-white migrant disabled woman from Malaysia living in the UK. Her chapter beautifully illustrates the complexities of daily negotiations across a diverse range of advocacy and activist groups, the journey from citizen to advocate to activist, and the ways that her intersectional identity has been a necessary part of this path. Lisney’s personal reflections and learnings reveal the important role of internal critique and dialogue to forging an activist path as a migrant woman of colour in the disability movement. Zahari Richter provides ‘auto-virtual ethnographic’ reflections on disability queer activism. Richter offers a strong argument for the richness of online activism and social media organizing. Significantly, Richter elucidates the importance of information communication technologies and social media platforms as a strategy for an activist embedded across multiple social movements. Drawing on queer and online identity theorists, Richter discusses the various online mediums

Introduction  9 and platforms, the issues that can emerge in these online communities and, most importantly, the possibilities that they offer queer disability activists. Part 4: agitating the state This part focuses on the different approaches used by disability activists and organizations to put pressure on the state, agitating outside and inside government to change attitudes, pressure for the passing of rights legislation, bring about policy change and realize state-funded programmes. The chapters outline the necessity of agitating the state for the realization of social, political, economic and cultural rights that are critical to everyday forms of citizenship for people with disabilities. Katie Ellis focuses on the subversive work of the Bolshy Divas, a collective of activist women in Australia who engage in radical action on a group or individual basis to influence politicians and government. Their agitation of the state is not tied to a specific organization but relies on the non-hierarchical involvement of women with disabilities and their allies, using social media as a platform to organize actions which involve the use of humour and creativity as well as strong representation to government. Muhannad Alazzeh discusses a different form of activism in Jordan. The emphasis in this chapter is on a series of campaigns designed to change the focus of government attitudes to people with disabilities and to develop new legislation in line with the Convention on the Rights of Persons with Disabilities (CRPD). Unlike the Bolshy Divas, Jordanian disability activists have sought to work within the government. They negotiate and use evidence to develop new understandings and further their claims for disability justice. Alazzeh acknowledges the importance of both outside and inside approaches to gain support from the government, through lobbying and through making submissions to key reports which are then taken forward through inside activists. Alberto Vásquez Encalada analyses activism and advocacy in Peru, focusing on the importance of having formalized disability organizations that are able to work on common agendas in order to promote change. His chapter emphasizes the importance of Peru’s ratification of the CRPD in strengthening networks and alliances of disability organizations and in seeking the common goal of legislation that reflects the CRPD. The election of five people with disabilities to the Peruvian government is seen as important in leading to positive legislative and policy changes. In contrast, Marianne Hedlund reflects on the political context of activists working on the ground in Bolivia. She describes the contentious actions taken by disability activists in two long marches to present their demands directly to the state, documenting the resilience and persistence of these actions and the exhaustion and desperation which underlie them. The chapter reveals the importance of contentious strategies and tactics to attract international media attention and thus exert increased pressure on the state to take action. Hedlund describes the difficulty in getting change at the government level, even with radical action.

10  Karen Soldatic and Kelley Johnson Part 5: working transnationally The final part of the book draws attention to the different types of transnational advocacy and activism that disabled people and their allies ‘do’. Elsewhere this has largely focused on what Keck and Sikkink (1998) suggest is a form of ‘boomerang politics’ where advocates and activists work at the global level to place downward pressure on national governments to ratify and implement global disability rights norms. As we see in Part 4, this has clearly been the intent of disability activists and advocates engaging in the international realm of politics and, no doubt, it has been a commanding strategy in the global realization of disability rights. In Part 5, however, the contributors examine transnational advocacy and activism outside global governance institutions and ratified norms. The contributors illustrate their continued work across national borders, the tensions that emerge on the ground when trying to build regional strategic alliances, and the politics of intervening in donor-country aid policies and programmes. The opening chapter by Ines Bulic Cojocariu describes the work of the European Network on Independent Living (ENIL) in advocating for the right to independent living across the European Union (EU) and the monitoring of funds for such initiatives allocated via the European Structural and Investment Funds (ESI Funds). Given the significant divergence in access to independent living initiatives, supports and programmes across the EU, advocates working across borders have to negotiate disparate histories, institutions and politics. ENIL has been pivotal to legislative reform, with advocates requiring a vast range of techniques and strategies to drive local change across different national boundaries. While the work of ENIL presents a coherent effort of disability advocacy and activism built upon a common and shared platform of disability reform, the next chapter in this part, by Privilege Haang’andu, discusses the tensions and contradictions that emerge with the global ascension of western disability rights norms in the African context. She analyses the significance of activist work in building alliances across regional borders to create an Afrocentric disability activism and identifies the ways in which African disability activists are working to create regionalized frameworks that draw on the direct concerns of local disabled people. Significantly, Haang’andu identifies the troublesome nature of international NGO practices of disability rights that ignore regionally based activist strategy as part of their development initiatives for disability inclusion. The next chapter by Deborah Stienstra examines the discourse of disability in development policy through the Canadian government’s Feminist International Assistance Policy (FIAP). Stienstra illustrates the important in-country work of Canadian disability activists and advocates with their own government to ensure that women with disability in the Global South benefit from the FIAP. Stienstra identifies key gaps and the significance of intersectional organizing for the Canadian disability women’s movement advocating for women with disabilities living in the Global South. This leads to our final chapter, a self-reflexive piece by Paula Campos Pinto about her work as a Global North researcher supporting local disability advocates

Introduction  11 and activists working in the Philippines on disability rights monitoring. Speaking as an expert researcher ally, Pinto illustrates the significant challenges faced by allies, which become amplified by her position of power and privilege as a Global North researcher in the Global South. Importantly, Pinto provides a critical framework drawing on the work of Bourdieu and his theories of power to encourage researcher allies in their roles, offering new insights into the potentiality, limitations and constraints of being an ally. Our conclusion gives an editorial analysis of what we saw as the key themes to emerge in the book, examining a number of areas prevalent across the chapters. Even though each of the chapters is unique and focuses on divergent areas of disability activism and advocacy, these themes appear as core learnings that are shared. We provide a coherent synopsis of some of the tactics, strategies and actions that have forged disability social transformations in response to disabled people’s struggles for justice, dignity and respect.

References Alvaredo, F., Chancel, L., Piketty, T., Saez, E. and Zucman, G., 2018. World inequality report 2018. Berlin: World Inequality Lab. Americans with Disabilities Act, 1990. Pub. L. No. 101-336, 104 Stat. 328 (1990). Block, P., Kasnitz, D., Nishida, A. and Pollard, N. eds., 2016. Occupying disability: critical approaches to community, justice, and decolonizing disability. New York, NY: Springer. Charlton, J., 2000. Nothing about us without us: disability oppression and empowerment. Los Angeles, CA: University of California Press. Disability Discrimination Act, 1992. No. 135. Canberra: Commonwealth Government. Galer, D., 2018. Working towards equity: disability rights, activism and employment in late twentieth-century Canada. Toronto: University of Toronto Press. Gusterson, H., 2017. From Brexit to Trump: anthropology and the risk of nationalist populism. American Ethnologist, 44 (2), 209–214. Keck, M. E. and Sikkink, K., 1998. Activists beyond borders: advocacy networks in international politics. Ithaca, NY: Cornell University Press. Kelly, C. and Orsini, M., 2017. Mobilising metaphor: art, culture and disability activism in Canada. Vancouver: University of British Columbia Press. Maddison, S. and Scalmer, S., 2006. Activist wisdom: practical knowledge and creative tension in social movements. Sydney: UNSW Press. Millear, A. with Johnson, K., 2000. Thirty nine months under the Disability Discrimination Act. In: R. Traustadottir and K. Johnson, eds. Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley Publishers, pp. 239–252. Pelka, F., 2012. What we have done. Amherst, MA: University of Massachusetts Press. Tilly, C. and Tarrow, S., 2015. Contentious politics. 2nd edn. Oxford: Oxford University Press. Zames Fleischer, S. and Zames, F., 2001. The disability rights movement: from charity to confrontation. Philadelphia, PA: Temple University Press.

Part I

Remembering and remembrance

2

‘We’re being treated as second-class citizens’ Community, family and learning disability activists campaigning for dignity in death Nigel Ingham

Background Between the mid-1980s and the end of the century, most long-stay hospitals in England closed as part of the drive towards community care (Ingham 2011). The existence of Calderstones as a large long-stay National Health Service (NHS) hospital for people with learning disabilities effectively ended in 2000. At this point, most of its vast main site was demolished to make way for a housing estate and the Regional Health Authority sold its cemetery to a private developer. However, a much reduced Calderstones (or Mersey Care NHS Foundation Trust Whalley, as it became known) continued as a low- and medium-secure unit for people with learning difficulties. Under the conservative government’s Transforming Care agenda, the site is likely to close in 2020, almost a century after Calderstones Certified Institution for Mental Defectives opened.

Figure 2.1 An aerial view of Calderstones, c. 1950s. The hospital cemetery is in the far top right corner of the photograph: the area behind the whitish building. (Courtesy of Calderstones NHS Foundation Trust.)

16  Nigel Ingham

Figure 2.2 Annual Remembrance Service, held every November at the Commonwealth War Graves site, c. 2010s. (Courtesy of Calderstones NHS Foundation Trust.)

Overall, the 21st century history of the former institution’s cemetery has been one of woeful neglect and vandalism. Since its sale by the NHS, the cemetery has had multiple owners. With one exception, these custodians have overseen the removal of headstones, accompanied by regimes of neglect. There was also a short spell of wanton destruction by local youngsters. For many years, the site has resembled a wild, unkempt and overgrown field. Other than one or two former staff members, in the consecrated ground lie the remains of at least 1,172 women, men and children who lived in Calderstones. Also interred are 13 babies, who were evacuated from Booth Hall Children’s Home in Manchester at the start of the Second World War. The status of the institutional graveyard is given an added twist with its position next to a Commonwealth War Graves Cemetery. Here reside the bodies of 42 armed forces personnel who died when Calderstones was a military hospital during the two world wars. The site is in immaculate condition. It is in stark contrast to the recent state of the hospital cemetery, through which you have to pass to reach the military graves and memorial. Many walk this route every November to attend the annual remembrance service. Although right to honour the war dead, their burial ground, with its memorial and annual remembrance service, contrasts drastically with the limited acknowledgement afforded to those who died as institutional ‘patients’. These two adjacent cemeteries, linked by the same institution, sadly seem to reflect the differing attitudes towards the value we place on our fellow citizens.

‘We’re being treated as second-class citizens’  17

Figure 2.3 Remains of a memorial in Calderstones Cemetery, April 2017. (Courtesy of Pathways Associates CIC.)

The Calderstones campaigning story Campaigners and supporters The broader campaign around the former Calderstones Hospital cemetery is characterized by its multi-voiced nature, yet, with one notable exception, at the heart has always been a small number of local activists. Actively supporting these efforts, particularly in recent times, is a wider community comprising families of those interred; people with learning difficulties; their allies, including disability rights activists, practitioners and academics; and former institutional staff. Contributions from this broader platform of support, although fluid, have at times been considerable and critical in strengthening the campaign. Local activists have come from the village of Whalley, on the outskirts of which is the former institution and its cemetery, and the surrounding area. Late 2017 heralded the involvement of a key individual who lives outside the immediate environs. Dennis Buckley, a retired Calderstones social worker, through his own research as well as contact with me while I was running a history project on the institution (Pathways Associates 2018), became aware of the unfolding crisis at the cemetery. He contacted prominent long-standing local activist Mel Diack. With his professional background, Buckley is well versed in advocating on behalf of people with learning difficulties and their families. Respectful of the efforts by local activists and families, he has become an invaluable contributor and leader, albeit a reluctant one, in a campaign rich in legal and political complexities.

18  Nigel Ingham Origins of the campaign There has been a thread of local activism over many years since the early 2000s. Prominent in this were Mel Diack, who is still involved, and the late George Hardman. The former in many ways became the public face of concerns about the cemetery, while the latter played a no less important pragmatic role. Hardman, unlike Diack, had strong Calderstones links as a former member of staff. Ironically, given the contrasting fortunes of the two plots, it was through their passionate interest in the war graves that they became concerned about the residents’ graveyard. The start of protests regarding unsavoury developments at the graveyard can probably be traced to around 2002. Before this, Diack had seen the impressive array of headstones marking the graves of those who had lived in the institution. However, on a visit to the site that year, he recalled, ‘They’d all gone! … Apart from three that was stacked up … I felt so sick. Because then I twigged that they’d just been sold’ (M. Diack, conversation with the author, 9 August 2018).1 Apparently, Hardman and he embarked on an unsuccessful quest to track down the headstones at stonemasons. Similarly, Diack recalled failed attempts to engage either the local media or the police, with the latter arguing that it was a private matter for the owner. Unencumbered by the presence of headstones, the next owner invested heavily in smartening up the graveyard and the chapels, installing classical statues and

Figure 2.4 Calderstones Cemetery, looking towards the chapels at its entrance, c. 1970s. (Courtesy of Dennis Buckley.)

‘We’re being treated as second-class citizens’  19 a mock Garden of Remembrance with a memorial to the residents. The latter, Diack noted, was built on top of graves. He recalled raising this matter with the owner, who stated that it was alright because it had only disturbed the top layer. According to Diack, the owner asked, ‘Who are you?’ ‘Well I’m actually just a local resident.’ ‘Well I own this.’ In a nice way. Didn’t fall out with each other. ‘Well you’re maintaining it. You’re looking after it. It looks great. I wish you well.’ However, more sinister concerns emerged in 2008 after the next developer gained planning permission for a crematorium. This was the first indication of such plans for the site. Diack recalled challenging the owner’s claim of a single ‘burial pit’ in which about 20 former residents were buried. He recollected a dialogue in which he pointed out that ‘There’s a thousand odd.’ ‘No, you’re lying.’ ‘You’ve not even done your research, have you?’ ‘I don’t have to. I bought this. Money. Going to get this done. And if you’re right and there’s ex-patients buried here, I’ll raise this up by about three foot … And then I’ll build on it.’ The owner apparently brought in a ‘thousand tons of soil’ but, possibly because of threats made by Diack and Hardman, the owner’s plans seemed to come to nothing. In 2008, local youngsters vandalized features associated with the graveyard, including the chapels. Initially, Diack recalled that his efforts to complain to official agencies were unsuccessful. Calderstones NHS Trust was not interested. The police again stated that it was ‘private property. And the owners haven’t rung up’. Diack contacted the BBC. A reporter came to the site but access was denied by the NHS Trust, which held a key for visitors to the war graves. According to Diack, the journalist then phoned Calderstones: BBC here. We’d like these gates open in ten minutes. We’re also ringing the Chief of Police for Lancashire. Now either he comes here – there’s a graveyard been desecrated – or his number two. Or we will be on the news tonight stating what’s gone on. Access was gained; the BBC reported on the cemetery and its damage (BBC 2008). In the wake of this activity, the police became involved and, along with Diack, expressed disgust at the incident in the local press (Lancashire Telegraph, 10 July 2008).

20  Nigel Ingham From around 2006 – when it appears the ‘smart’ owner sold the site – until recent times, the cemetery has continued to be overgrown. In 2012, apparently under new ownership yet again, Diack recalled writing and speaking up about its unkempt state: I said to this manager, ‘Why don’t you cut the grass?’ ‘Oh it’s cost and it’ll grow again.’ ‘Well you’ve bought it. What about those patients under there?’ ‘No, they’re all right. They’re not going anywhere.’ Concerns were assuaged by promises of a respectful, attractively landscaped future for the cemetery. It was probably in 2012 that the voice of relatives was first heard publicly. Sandra McArdle, who lives in Australia, attempted to visit the grave of her aunt, Josephine Middleton. Originally from Liverpool, this family member had died in Calderstones in 1948, aged 32 years. Unfortunately, the overgrown nature of the cemetery, combined with inadequate information, meant that McArdle was unable to find the exact location of the grave. In a retrospective local newspaper piece, she was reported as saying, We were appalled at the disrepair, the neglect and desecration in the fact the headstones had been removed. Who makes these inhumane decisions? I just stood and cried that this could be done to these unfortunate souls who needed our help in life and in death … Most would have had a pitiful, somewhat lonely life, yet in death we cannot give them the dignity they deserve. (Clitheroe Advertiser and Times, 21 March 2013) After returning to Australia, McArdle made contact with Diack, whose details were publicly available. Hardman, through his Calderstones connections, tracked down a burial book. The exact location of Josephine Middleton’s plot was identified and, along with other graves, marked. McArdle was, according to Diack, ‘over the moon’ and returned in 2013. In preparation for this visit, Diack recalled, My friend George Hardman went and cut with a pair of shears. We found the grave and he cut round the grass, made it nice. We clubbed together George and I and we paid for a plaque with Josephine’s name on and two others that are buried there. I got my friend Cliff Ball to come and do a proper service and pay our due respects. Probably in the wake of local press publicity, other relatives got in touch around the same time. Although these and a handful of other involved relatives mainly live around the world, through letter writing and email contributions they continue to play an active role in the cemetery campaign.

Figure 2.5 George Hardman marking and tidying up a plot in the cemetery. (Courtesy of Mel Diack.)

Figure 2.6 Sandra McArdle (front right) in 2013 visiting the grave of her aunt, Josephine Middleton. Behind Sandra is her sister, and on her left her niece. George Hardman is standing in front on the left, with Mel Diack behind. (Courtesy of Mel Diack and Sandra McArdle.)

22  Nigel Ingham Responding to an escalating crisis In 2015, the current private owners were granted permission by the planning authority, Ribble Valley Borough Council, to build a crematorium and car park. Diack responded to this by appealing in the local press for the formation of a Friends of Calderstones Cemetery group. He called for all surviving relatives of patients to get in touch … We’re worried that the developers may just crash ahead and concrete over some graves before anyone can stop them … A Friends of Calderstones Cemetery group would be able to put pressure on to ensure those 1,000 people are treated with dignity. (Clitheroe Advertiser and Times, 21 December 2015) There was contact with relatives at this point, but they were mainly based in the United States and Australia. An informal ‘Friends’ group was formed, and Diack recalled it as comprising around eight local people, none of whom wished to take leading roles. By the time of the current crisis in late 2017, even this modest band had dwindled, partly because of individuals dying, including the redoubtable George Hardman. The 2015 planning permission was still in place in late 2018. However, campaigners confirmed in early 2018 that the whole site was consecrated. This was a pivotal discovery. Under the 1902 Cremation Act, this status in itself prohibits the building of a crematorium. Whether the cemetery was consecrated ground seems to have been neither investigated nor raised in either the original sale from the health authority or any subsequent planning deliberations. This planning picture has been muddied further by a quirk in the planning process. The local planning authority has always claimed that, in considering an application, it has no need to take into account the status of a plot of land as a graveyard, regardless of its consecrated status. Ribble Valley Borough Council requested independent environmental reports from the owners regarding impact on flora and fauna, not bodily remains. This latter point was raised by Whalley Parish Council. In response, the planning authority stated in its final report that this was ‘not particularly a planning issue. This is covered by other legislation with which the developer would need to comply in the event that planning permission is granted and the development is implemented’ (RVBC 2015). Such a stance has caused frustration for campaigners. Diack said, ‘The planners are not interested – graves don’t concern them. How wrong is that?’ By late 2018, the campaign group was challenging this position. Via a request from the local Member of Parliament, the House of Commons library accessed fresh information. The 1970 Town and Country Planning Act stipulates that local authorities are directed to take into account any ‘material consideration’. The campaigners have written to the planning authority, suggesting that bodily remains are pertinent to such criteria. Up until the northern summer of 2017, the cemetery continued to resemble a wild overgrown field, broken up by a track to the impeccable War Graves Cemetery at its eastern end. At that time, the road access was boarded up with official notices indicating that plans were afoot to develop the site. Contractors began

‘We’re being treated as second-class citizens’  23 landscaping the entrance to the graveyard. Then in late November 2017, earthmoving machinery went beyond the two chapels bordering the cemetery and onto the burial site itself. This activity was apparently counter to earlier promises made to Diack, who recalled telling the developers, ‘Be nice for you not to go past the chapels until everything is corrected.’ ‘Oh yes we won’t do that Mel. Don’t worry’ … Next thing bulldozers are going in, wagons, right through, right past the chapels. And I got hold of this manager … I said, ‘You promised me.’ ‘Did I? The boys might have been a bit quick.’ Campaigners were seriously worried about the impact of this intrusion, with the potential to cause disturbance to those interred. The developers issued reassurances that the specific families affected by possible exhumations had been consulted with exhumation licences issued, yet Buckley contacted the Ministry of Justice and discovered that no licences had been issued. This information persuaded the local activists and families that they had, in the words of Diack, been ‘duped’. The police and Ministry of Justice were informed and were able to effect a temporary pause in cemetery work. However, legally there was a serious issue. On legal advice, the owners argued that they were not disturbing any existing graves. The police and the ministry could only intervene if there was evidence of ‘disturbance’. Unfortunately, the legal definition of this term is vague and makes intervention difficult. Furthermore, there appeared to be no legal precedent for what was happening. An inconclusive meeting was convened between local activists and Buckley, on one side, and representatives of the owners, on the other. Especially given the lack of confirmation regarding the cemetery’s consecrated status, in late 2017 the prospects appeared bleak for the application of any meaningful safeguards by objectors to crematorium development. Although the developers continued to give assurances about respecting the sanctity of those interred, there were well-founded suspicions that irrevocable damage had already occurred. Earthworks continued in fits and starts into the new year. At least one grave, unusually that of a former member of institutional staff rather than resident, was covered. Furthermore, in the first weeks of 2018, painstaking research by campaigners established, almost beyond any doubt, the general location of a Garden of Remembrance. Here the ashes of 211 former residents are interred. The developers, in their haste and ignorance, mistakenly assuming that the garden was located elsewhere in the cemetery, had almost certainly disturbed a section of this area. Early in 2018, campaigners were facing significant challenges around legal and practical intervention options. The confirmation of consecrated status meant that suddenly there were potentially meaningful legal avenues that campaigners could pursue. The legal framework now shifted to those aspects of ecclesiastical law which referenced consecrated cemeteries. According to one campaigner, this shift came ‘out of the blue’ at a time when he had been ‘praying for the unexpected’. The church, in the form of the Diocesan Office of the Bishop of Blackburn, now became, at least for the time being, more significant than the Ministry of Justice.

Figure 2.7 Calderstones Cemetery, looking towards the chapels at its entrance, December 2017. (Courtesy of Pathways Associates CIC.)

Figure 2.8 Groundworks in front of the chapels, very near or on the probable site of the Garden of Remembrance, early 2018. (Courtesy of Mel Diack.)

‘We’re being treated as second-class citizens’  25 The owners could apply to the Bishop of Blackburn for partial ­deconsecration. The Bishop can grant this under Section 22 of the Care of Churches and Ecclesiastical Jurisdiction Measure 1991. This legislation stipulates that any application for deconsecration is made by the Archdeacon on behalf of the applicants. If accepted, this would allow building work to continue in an official and lawful manner, but only in specified deconsecrated areas. Importantly, the legal process also allows for public objections to any application to be lodged. At the same time in January 2018, shortly after consecrated status was confirmed, informal communication with the owners was broken. After a tortuous journey to access burial records, Buckley was working with a representative of the owners to identify the names and locations of all buried in the cemetery. There was a shared agreement that such a task was essential to enable the tracing of relatives whose family members were in plots at most risk from any building developments. Consultation with families about what they would like to see happen could then follow. As well as the graves, this research revealed the names of those whose ashes were interred in a Garden of Remembrance, the general location of which was still disputed at this point. This collaborative investigation was abruptly terminated by the owners, who instructed their representative to have no further contact with Buckley. This probably represents the last time there was a meaningful, direct line of communication with the owners. Buckley continued with the task of naming and placing those interred. By spring 2018, he had produced a comprehensive register, identifying individuals, their date of death and plot number. This is a powerful testimony to the memory of specific people, who have been largely forgotten and hidden away. It helps humanize and challenge a discourse which, as with the institutions themselves, often focuses on congregate numbers rather than the intrinsic quality of individual lives. In April 2018, a Public Notice was issued by the Archdeacon on behalf of the developers for partial deconsecration. In a welcome development, the plans respected the known graves of nearly 1,000 former institutional residents; however, they failed to mention the ashes of those interred in the Garden of Remembrance. For the campaigners, this was a confusing oversight since strong evidence had already been submitted to the Archdeacon indicating the existence of this feature. By this stage, as described later, people with learning difficulties were involved and, along with their friends and supporters, ex-staff, families and members of the local community, they wrote to the Archdeacon and Bishop of Blackburn expressing their concerns. Alongside individual submissions, the Friends of Calderstones Cemetery, informed by an eminent and specialist barrister, formally submitted a lengthy and detailed document in response to the Diocesan Public Notice. This submission presented further compelling evidence as to the general location of the Garden of Remembrance. Arguably, this was critical in persuading the owners to withdraw their application at the last minute. The official Diocesan response in late May 2018 stated that ‘Submissions received in response to public notice of the application included evidence that there are ashes buried in part of the area relating to the application’. As it stood, the application had been unlikely to succeed, but withdrawal means the owners still have the option of reapplying for deconsecration.

26  Nigel Ingham The owners’ tenacity in pushing for a crematorium development is clear: d­ uring 2018 they submitted at least three revised planning proposals. It is likely they have invested hundreds of thousands of pounds, with venture capitalist backers expecting returns on an investment in a well-used private crematorium. The latest revisions were opposed by campaigners, as they still appeared to pay scant regard to ashes interred in the Garden of Remembrance. Campaigners both collectively and individually submitted written objections by the end of August 2018. In autumn 2018, the future of the cemetery was at a critically uncertain stage. Establishing agreement on the location of the Garden of Remembrance was central to any crematorium plans. The Archdeacon of Blackburn promised an archaeological survey and requested additional revisions to their plans from the owners. In the meantime, the local planning authority delayed its response to the owners’ latest proposed revisions. This is possibly because they were also awaiting the outcome of the ground penetrating survey. Having begun work on landscaping and gates, it is highly probable that the owners will argue there is no need for what could now constitute a risk-laden fresh planning application. Under planning law, the developers have to show that they have started to act on plans passed in 2015 within three years; otherwise permissions will lapse.

The issue: ‘second-class citizens’ Although the campaign is enmeshed in legal and political complexities, it can be claimed that at stake is an overriding ethical issue hinging on the rights and status of people with learning difficulties. The view of self-advocates with learning difficulties For people with learning difficulties, their treatment as ‘second-class citizens’ is the fundamental principle awakened by the critical state of the former Calderstones Cemetery. This message emanates from the North West Regional Forum (NWRF) of Self Advocates, among whose members are former Calderstones residents. Being part of the NWRF has enabled people with learning difficulties to be informed and heard during the cemetery campaign. The group is a ­well-established, integral part of a North West England campaigning network coordinated by Pathways Associates/North West Training and Development Team (NWTDT). This organization works with self-advocates, family carers and lead commissioners of learning disability services in the region to ensure fairer and better lives for people with learning difficulties, autism or both, and their families. The NWRF asserts that events at the burial ground devalue people with learning difficulties. Daniel Doherty, a former Calderstones resident, claims, We’re being treated as second-class citizens because of our disability. We shouldn’t be treated like that. They wouldn’t treat anybody else. Why are we being treated differently? ’Cause we’re different? It’s unfair. It’s offensive to the families, to friends of ours. It’s not nice. (Pathways Associates and NWTDT 2018)

‘We’re being treated as second-class citizens’  27 Similarly, in their campaign statements and letters, NWRF says, ‘We think the lives of the people who were laid to rest at Calderstones graveyard are important’. The contrast with the pristine War Graves Cemetery located next door fuels such a perspective: We know that the lives of people with learning disabilities are often not valued. We can see this in the difference between the war graves next door to this cemetery. The war graves are well cared for. The graves of the people with learning disabilities are not. (NWRF letter to the Bishop of Blackburn, February 2018) Doherty has strong words on this theme, stating that, ‘War graves clean and wellkept. What’s the difference between them and us? Nothing!’ Furthermore, the former institutional residents and the wider membership of the NWRF assert that they speak for ‘the whole community of people with a learning disability in the North West and across the UK’ (NWRF letter to the Archdeacon of Blackburn, May 2018). They are concerned that developments which ride roughshod over those interred in the graveyard send ‘the message that their lives and deaths don’t matter as much as non-disabled people’s’. The wider perspective Contemporary and historical evidence supports the views expressed by the North West Regional Forum of Self Advocates. People labelled as having a learning difficulty, for instance, continue to comprise one of the most devalued and stigmatized groups within our society (DH 2009, 2012, Gravell 2012, Mee 2012, Mencap 2012a, 2012b, O’Neill 2017). Historically, the ways in which large, long-stay institutions such as Calderstones, nationally and internationally, devalued and marginalized individuals with learning difficulties are also well documented (Morris 1969, Potts and Fido 1991, Johnson 1998, Ryan and Thomas 1998, Ingham 2003, Malacrida 2015). In England and Wales in the 1970s, there were nearly 45,000 people with learning difficulties living in NHS establishments with respective populations of 200 or more (DHSS 1976, Ryan and Thomas 1998). However, despite systemic devaluing discourses and practices prevalent in institutions, personal testimony from those who lived and worked in those places, including Calderstones, suggest that certain staff and residents exercised considerable agency in humanizing and individualizing everyday life (Pathways Associates 2018). Death and dying: an overview Issues around death and dying perhaps provide a critical barometer of the ways in which people with learning difficulties have been, and continue to be, devalued members of our society. United Kingdom reports have evidenced critical failings by the National Health Service with respect to the premature deaths of people with learning difficulties (University of Bristol 2013, CQC 2016a, 2016b). The 2018 Learning

28  Nigel Ingham Disabilities Mortality Review is the latest and highlights that life expectancy, far from improving, is getting worse in some instances (University of Bristol 2018). It also reports that more than a third of deaths of people with learning disabilities were potentially amenable to healthcare interventions. As exemplified by the death of Connor Sparrowhawk, a young man with autism, attitudes and practices by mainstream healthcare professionals have often been revealed as inadequate (Ryan 2018). As part of the national Learning Disabilities Mortality Review, since 2015 members of the North West Regional Forum of Self Advocates, as well as the North West Regional Family Forum, have actively investigated the ways in which hospitals review the deaths of people with learning difficulties. According to the Pathways Associates chief executive, this focus, although uncomfortable, has provided an important emotional framework for self-advocates to connect with what has been happening at Calderstones Cemetery: even in death their lives are devalued (Lynn James-Jenkinson, conversation with the author, 19 September 2018). Recently, historians have argued that deaths of people with learning disabilities are under-researched (O’Driscoll 2018, Walmsley and Dale 2019). It is claimed, for instance, that historical research would offer a critical context to contemporary concerns regarding premature deaths. A degree of preliminary research suggests, for instance, that ‘suspicious deaths’ in long-stay institutions were not that uncommon. This echoes an assertion made by a former senior nurse: There weren’t that many people with physical care needs in institutions probably because they didn’t live that long ’cause the medical practice wouldn’t treat them … I remember having arguments about people who were ill at the Royal Albert [Lancaster] not having access to good medical treatment for cancer, for heart problems, things that we would expect to be treated for. (Mary Lawrenson, interview with the author, 9 September 2009) Avoidable deaths appear to be a long-standing issue for people with learning difficulties. Graveyards and memorials How we memorialize and look after our dead may reflect the value or esteem with which the individual, or group, is held in life. Members of the NWRF, for instance, highlight the contrasting states of the hospital and war graves plots. Similarly, when appealing to the Bishop of Blackburn, Patrick Burke asks the rhetorical question, ‘Would the bishop like that? He wouldn’t like his gravestone taken away and built on’ (Pathways Associates and NWTDT 2018). Our picture of learning disability institutional graveyards in the United Kingdom is incomplete. Institutions such as the Royal Albert and Leavesden (O’Driscoll 2018) have a substantial number of unmarked graves. Exceptions to

‘We’re being treated as second-class citizens’  29

Figure 2.9 Memorial to all the individuals buried in the graveyard of the former Brockhall Institution, near Blackburn. Erected in 1993, paid for by the private buyer of the hospital, Gerald Hitman chose to be buried there with his name inscribed on the memorial. (Courtesy of Pathways Associates CIC.)

this trend include Brockhall hospital graveyard, which has an impressive memorial naming all those interred, and Brandesburton in Yorkshire, where, as a result of a campaign, a generic headstone will be erected to former residents buried in a parish churchyard (Atherton 2018). In some instances, as new housing developments spring up on old institutional sites, there is little to indicate that the institution itself ever existed. Members of the Open University’s Social History of Learning Disability Group reference Newchurch, Princess Marina and Hensol, and assert that institutional graveyards and memorials are subjects demanding further research (email correspondence 2018).

Campaigning self-advocates Self-advocates with learning difficulties who are members of the North West Regional Forum have played a key role in the campaign. Crucial to their involvement has been accessible forms of communication. The NWRF has been aided by substantial resources provided by its wider Pathways Associates/NWTDT networks, especially the charity My Life My Way. Regular contact and liaison between members of the NWRF and other participants in the cemetery campaign have often been mediated by the Pathways Associates/NWTDT chief executive. Drawing on in-house expertise in accessible formats, this mediation has resulted

30  Nigel Ingham in a variety of Easy Read materials. Helpful in this process has been the array of current and historical photographs illustrating the state of the graveyard. Updates and adaptable template letters to be sent at different times to the various authorities have also been produced. Meetings, social media and email have all been used to circulate and coordinate the information and ensure that objections are communicated to the appropriate agencies at the right times. The NWRF’s networks have been important in publicizing the campaign nationally. Shortly after the NWRF became aware of the cemetery crisis, at their annual conference in early 2018, four self-advocates who had lived in Calderstones made a short video in which they expressed their views about the cemetery (Pathways Associates and NWTDT 2018). They needed little prompting. In addition, Disability News Service (Pring 2018), the Guardian (Halliday 2018b) and Community Living (Ingham 2018) have featured the campaign, all involved because of Pathways Associates/NWTDT contacts. The Pathways Associates CEO believes that campaign participation by NWRF members was helped because they were already involved in exploring pertinent themes of death and Calderstones’ present and past. As mentioned, the selfadvocates were investigating deaths of people with learning difficulties; second, in response to the government’s Transforming Care agenda, NWRF members had been making their voices heard around the future of forensic services on the former Calderstones site; and last, the NWRF was part of an advisory group for a Calderstones history project by Pathways. This provided an ‘emotional framework’ within which to make sense of cemetery developments (L. JamesJenkinson, conversation with the author, 19 September 2018). Being treated as ‘second-class citizens’, as already highlighted, is at the heart of the NWRF perspective. Interwoven with this is a strong sense of injustice. On learning that the gravestones had been removed, for instance, John Thompson, a former resident, said, ‘I think not supposed to take graves out at all, not right to do that’ (Pathways Associates and NWTDT 2018). In similar fashion, Patrick Burke is aggrieved that ‘They took all the cemetery stones away and all the names of the people what died there. Which I think was unfair’ (Pathways Associates and NWTDT 2018). Andrew Barbour, who also spent years in Calderstones, implies that any untoward cemetery developments would compound a lifetime of unfair treatment for those interred because they ‘lived a life they shouldn’t of in the first place’ (Pathways Associates and NWTDT 2018). The NWRF aspires for a cemetery resolution based on ideas of respect, protection, care, maintenance and acknowledgement. Its members, for instance, want to ensure that ‘our friends who are buried in Calderstones Cemetery are treated with respect’. As Barbour asserted, ‘we have friends that are buried there and it’s consecrated ground. It should be left alone. It should not be touched’ (Pathways Associates and NWTDT 2018). At NWRF’s annual conference in 2018, around 250 delegates chanted, ‘Let our friends rest in peace’. In their revised plans during that year, developers appeared to be doing this with the ‘known’ graves. However, by the middle of 2018 specific concern had shifted to the Garden of Remembrance. In their

‘We’re being treated as second-class citizens’  31 submissions to both the Diocese of Blackburn in May and then the local planning authority in August, the NWRF was adamant that ‘We want the Garden of Remembrance to be protected. Where the Garden of Remembrance is MUST be confirmed before any more work is done so that it can be protected’ (NWRF, letter to RVBC, August 2018). This underlying desire for respectful and protective ways forward translates into requests around the care and maintenance of the site. The NWRF is asking that for the foreseeable future there be ‘a plan to maintain the grounds’. Burke argues that the graves ‘should be cleaned and looked after’. In addition, the NWRF wants any damage already inflicted on graves or the Garden of Remembrance to be repaired as much as is practically possible. Furthermore, it would like a plan ‘to fix the chapels’ so they become places for reflection. Finally, the NWRF wants those interred to be properly remembered: We do not think they should be forgotten … There should be a proper memorial to our friends and peers who have been laid to rest. The memorial should include their names … (and graves) need to be identified and marked. (NWRF, letter to RVBC, August 2018) The NWRF views these requests as ‘reasonable’ since they apply to other cemeteries and gardens of remembrance. Their examples include the War Graves Cemetery, a garden of remembrance in Blackburn and the Brockhall Hospital memorial. Finally, the NWRF is less concerned about who owns the site as long as their conditions are met. As requested in their submission to the Blackburn Diocese, they ‘need to know how the Bishop will make sure the things that are agreed happen’ (NWRF, letter to the Archdeacon of Blackburn, May 2018).

Reflections The campaign is very much alive, which means that any reflections are likely to be incomplete and open to revision. It also means that caution has to be exercised in terms of the disclosure of potentially sensitive information. Bearing these caveats in mind, a couple of reflections are worthy of note. The campaign has a personal and emotional heart. Patrick Burke, Andrew Barbour, John Thompson and Daniel Doherty have shared experiences with those interred in the cemetery, and knew some of the individuals. These include, according to Burke, a young man who was gay, but who ‘hung himself because of what he were. They buried him … He were a good lad like everybody else’. Families, including that of Sandra McArdle, have strong feelings about the final resting place of their relatives. This strength of emotion is perhaps partly because it is about reclaiming and embracing those who, often with the best intentions at the time, ended up being hidden away behind institutional walls. Former staff of Calderstones have been generous in giving their time to provide critical information about the cemetery. This can be viewed as emanating from their fond memories of personal relationships with individual residents, some of whom lie in

32  Nigel Ingham the institutional graveyard. Dennis Buckley, in describing his motivation, refers to half a century of contact with Calderstones and contact with people who are actually buried in that cemetery and who I suppose I felt both a personal and corporate responsibility for the fact that they were actually there. There are people who are buried there because I brought them to the hospital in the first place. (D. Buckley, conversation with the author, 8 August 2018) These people are describing a profoundly painful connection with what is happening at the cemetery. Others, like myself, have been deeply shocked and moved by the state of the graveyard but cannot claim this close emotional bond. The core issue underpinning objections to the cemetery is the threat developments pose to people with learning difficulties. The actions and attitudes of the owners and official agencies have to be measured against that central principle. Unfortunately, as intimated, campaigners have faced critical challenges in persuading decisionmakers, ensuring promises are kept and maintaining ongoing and respectful dialogue with external agencies. In particular, a prominent campaigner asserts that a profound sense of mistrust permeates relationships with the owners and the church. This, it is claimed, is strongest among those activists who have had personal dealings with either of these parties. The Friends of Calderstones Cemetery, the formal vehicle for the campaign, is committed to rectifying this state of affairs. There was an expectation, for instance, perhaps that the Diocese of Blackburn would be actively sympathetic to the cause of the campaigners. Unlike the owners, the church espouses inclusive policies towards people with learning difficulties (Church of England 2009). However, concerns have been expressed over delays in correspondence and, at times, dismissal (accompanied by apparently disproportionate critical scrutiny) of information supplied by objectors in favour of that emanating from the owners. Set against this, the Archdeacon, as explained earlier, has ordered an archaeological survey and asked for revised plans from the owners taking account of evidence supplied by campaigners. For some of the campaigners, these concessions have been too hard won, and serious concerns about the role of the church persist.

Conclusion The Calderstones Cemetery campaign is on a complex journey, with an unknown destination for the deceased and their families. Perhaps encouragement can be taken from another campaigner. Sara Ryan fought for Southern Health NHS Foundation Trust to be convicted of gross negligence in the death of Connor Sparrowhawk, her 18-year-old son with autism. In the wake of a 2018 court ruling awarding damages of just over one million pounds, Ryan said, I’m left thinking if Connor was here now in the shadow of Oxford crown court and St Aldates’ police station, he would say: ‘Why mum?’ And I would say: ‘I don’t know, but we’ve done you proud’. (Halliday 2018a)

‘We’re being treated as second-class citizens’  33 Such sentiments perhaps resonate with campaigners advocating a respectful future for a graveyard situated in a remote corner of North West England.

Acknowledgements Thank you to the North West Regional Forum of Self Advocates, Lynn JamesJenkinson, Dennis Buckley and Mel Diack. Responsibility for the chapter is entirely mine.

Note 1 All quotes from Diack are from this 9 August 2018 conversation with the author.

References Atherton, H., 2018. Remembering the asylum dead of Yorkshire. Community Living, 32 (1), 26. BBC, 2008. Vandals wreak havoc in cemetery. BBC News, 9 July. Available from: http:// news.bbc.co.uk/1/hi/england/lancashire/7497012.stm [Accessed 24 December 2018]. Care Quality Commission (CQC), 2016a. Report on Southern Health NHS Foundation Trust, following independent (Mazars) report commissioned by NHS England exploring failure to investigate and learn from deaths of patients accessing services for mental health, learning disability and older people. London: CQC. Care Quality Commission (CQC), 2016b. Learning, candour and accountability: a review of the way NHS trusts review and investigate the deaths of patients in England. London: CQC. Church of England, 2009. Opening the doors: ministry with people with learning difficulties and people on the autistic spectrum. Carlisle: Church of England. Available from: https://www.carlislediocese.org.uk/uploads/2029/Opening_the_Doors_-_Ministry_ with_people_with_learning_disabilities_and_people_on_the_autistic_spectrum.pdf. html [Accessed 24 December 2018]. Department of Health (DH), 2009. Valuing people now: a new three-year strategy for people with learning disabilities. London: DH. Department of Health (DH), 2012. Transforming care: a national response to Winterbourne View Hospital. Department of Health review: final report. London: DH. Department of Health and Social Security (DHSS), 1976. The facilities and services of mental illness and mental handicap hospitals in England and Wales 1976. London: HMSO. Gravell, C., 2012. Loneliness and cruelty: people with learning disabilities and their experience of harassment, abuse and related crime in the community. London: Lemos and Crane. Halliday, J., 2018a. NHS trust fined £2m for Connor Sparrowhawk and Teresa Colvin deaths. The Guardian, 26 March. Available from: https://www.theguardian.com/ society/2018/mar/26/nhs-trust-fined-2m-over-death-of-teenager-connor-sparrowhawk [Accessed 24 December 2018]. Halliday, J., 2018b. C of E intervenes in row over plan to build car park over graveyard. The Guardian, 30 April. Available from: https://www.theguardian.com/world/2018/ apr/30/church-of-england-buid-car-park-graveyard-calderstones-hospital-cemetery [Accessed 24 December 2018].

34  Nigel Ingham Ingham, N., 2003. Gogarburn lives. Edinburgh: Living Memory Association. Ingham, N., 2011. Organisational change and resistance: an oral history of the rundown of a long-stay institution for people with learning difficulties. Thesis (PhD). Open University. Ingham, N., 2018. Ignored and forgotten – in death as in life? Community Living, 31 (4): 16–17. Available from: https://www.cl-initiatives.co.uk/ignored-forgotten-death-life/ [Accessed 24 December 2018]. Johnson, K., 1998. Deinstitutionalising women: an ethnographic study of institutional closure. Cambridge: Cambridge University Press. Malacrida, C., 2015. A special hell: institutional life in Albert’s eugenic years. Toronto: University of Toronto Press. Mee, S., 2012. Valuing people with a learning disability. Keswick: M&K Publishing. Mencap, 2012a. Housing for people with a learning disability. Mencap. Available from: https://www.mencap.org.uk/sites/default/files/2016-08/2012.108-Housing-report_ V7.pdf [Accessed 24 December 2018]. Mencap, 2012b. Stuck at home: the impact of day service cuts on people with a learning disability. Mencap. Available from: https://www.mencap.org.uk/sites/default/ files/2016-08/Stuck_at_home.pdf [Accessed 24 December 2018]. Morris, P., 1969. Put away: a sociological study of institutions for the mentally retarded. London: Routledge/Kegan Paul. O’Driscoll, D., 2018. Why the little-known history of institutional deaths matters now. Community Living, 32 (1), 26. O’Neill, A., 2017. Hate crime, England and Wales, 2016/17. London: Office for National Statistics. Pathways Associates, 2018. Lancashire learning disability institutions: a people’s history of institutional life [online]. Available from: http://www.lancslearningdisabilityinstitutions. org.uk/ [Accessed 24 December 2018]. Pathways Associates and NWTDT, 2018. Let our friends rest in peace [video], Youtube. Available from: https://www.youtube.com/watch?v=s-Xg3RAn6QM [Accessed 24 December 2018]. Potts, M. and Fido, R., 1991. A fit person to be removed. Plymouth: Northcote House. Pring, J., 2018. Former long-stay residents plead with cemetery developers: ‘let our friends rest in peace’. Disability News Service, 1 March. Available from: https:// www.disabilitynewsservice.com/former-long-stay-residents-plead-with-cemeterydevelopers-let-our-friends-rest-in-peace/ [Accessed 24 December 2018]. Ribble Valley Borough Council (RVBC), 2015. Application 3/2015/0024. Available from: https://www.ribblevalley.gov.uk/planningApplication/25860 [Accessed 24 December 2018]. Ryan, J. and Thomas, F., 1998. The politics of mental handicap. London: Free Association Books. Ryan, S., 2018. Justice for Laughing Boy: Connor Sparrowhawk – a death by indifference. London: Jessica Kingsley Publishers. University of Bristol, 2013. Confidential inquiry into premature deaths of people with learning disabilities (CIPOLD). Bristol: University of Bristol. University of Bristol, 2018. The learning disabilities mortality review (LeDeR) programme annual report December 2017. Bristol: University of Bristol. Walmsley, J. and Dale, P., 2019. Asking questions about deaths at the old institutions. Community Living, 32 (2), 26–27.

3

‘Madhouse’ Performance artists with learning disabilities sharing the history of institutions Sue Ledger and Jan Walmsley with members of Access All Areas

This chapter is jointly written by two academics from the Social History of Learning Disability Research Group, based at The Open University, UK, and performers from London-based learning disability theatre company Access All Areas. Inspired by the life and legacy of learning disability activist and researcher Mabel Cooper (1944–2013), the chapter describes how we worked together as part of a collaborative advocacy and activism programme. The project, called Madhouse, is a large-scale immersive theatre production and public engagement project, funded by Wellcome, that confronts the history of institutionalization of people with learning disabilities. The aim of the project is to raise public awareness and debate on the effects that isolation and confinement have on the bodies and minds of people with learning disabilities. The project also seeks to question whether the closure of long-stay hospitals has ended institutionalization or if contemporary isolation at home has similar physical and mental effects. The chapter focuses on the research and development phase of Madhouse. This phase set out to inform people with learning disabilities about the history of institutionalization through creative learning, exploration and interpretation. Participants from Access All Areas included actors, performance poets, writers, rappers, dancers and a magician. The Madhouse project climax was immersive theatre performances at prestigious venues in London and Manchester in 2018. The chapter describes how a younger generation of people with learning disabilities found out about the history of institutions for people like themselves. We explain how they responded to learning about this aspect of their own cultural heritage by developing and curating an interactive museum exhibition, Madhouse, My House?, to increase public awareness of the recent large-scale ‘shutting up’ of people with learning disabilities. Finally, we present the findings from the evaluation of this exhibition. These indicate that sharing the history of institutional care is an important platform to raise public awareness and explore what has changed and what has stayed the same for people with learning disabilities today.

36  Ledger, Walmsley and Access All Areas

Who’s who and how we came together Mabel Cooper: the inspiration You could just hear it outside, the screaming and what have you, you’d think you were going into a MADHOUSE. (Cooper 1997, p. 22) This is how Mabel Cooper (1944–2013) described her initial thoughts as she was admitted in 1957, at the age of 13, to St Lawrence’s long-stay hospital in Surrey, a vast institution which at that time accommodated 2,000 people with learning disabilities. Mabel’s life was the inspiration for the Madhouse project and her words provided its name. Mabel Cooper was a leading learning disability campaigner, advocate and researcher with the inclusive Social History of Learning Disability Research Group. When she died in 2013, Mabel left a small legacy to progress work she had begun in schools and adult education settings to combat bullying and promote the full inclusion of children and adults with learning disabilities in their local communities. The estate of Mabel Cooper commissioned Access All Areas to make the film ‘No Longer Shut Up’ about her life. The film highlights Mabel’s experience of institutionalization. Its subject matter sparked conversations among learning disabled artists about how social isolation and institutionalization is continuing today, in people’s own homes, despite the closure of long-stay hospitals. These conversations led to the development of the Madhouse programme. Access All Areas: the performance artists We are the Madhouse artists. We are qualified performers with the theatre company Access All Areas. We have different abilities (diff-abilities). In this project, we are researchers and we are training to be workshop leaders. We are also creatively responding to history as performers. We make work that champions learning disabled creative voices, and we perform new, disruptive performances in London and around the UK. Our methodologies focus on enabling creativity in learning disabled individuals. Access All Areas theatre company delivers the accredited Performance Making Diploma at the Central School of Speech and Drama. Our company is committed to advocating and campaigning for change to improve the lives of learning disabled people. Jan and Sue: the academics We were commissioned by Access All Areas to teach their performers about the history of learning disability to inform their work on Madhouse. Former colleagues of Mabel Cooper, we are members of the Social History of Learning Disability (SHLD) Research Group at The Open University in the UK. At the heart of the

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research group’s approach, from its beginnings in 1994, is a recognition that ­people with learning disabilities are the experts in their own lives and have experiences, historical knowledge, viewpoints and skills to contribute to the recording of history. The SHLD Research Group is internationally recognized and its ethos is reflected in annual inclusive conferences, publications and research projects to document and share the social history of learning disability. As SHLD members, we have been involved in a range of research projects to explore the history of institutionalization for people with learning disabilities, including working with former hospital residents to record their memories, life stories and songs of resistance (for example Atkinson et al. 1997, Brigham et al. 2000, Ledger and Shufflebotham 2006, Spencer with Walmsley 2006). We drew heavily on this material as we designed the Madhouse workshops.

Understanding your history to help shape the future The importance of understanding and owning your history, painful though some of the language and stories may be, has been identified by oppressed groups. It was the starting point for feminist history (Rowbotham 1973). The introduction to Hall Carpenter Archives’ life stories of lesbians opens with the acknowledgement, ‘We need the past in order to understand ourselves. We need it in order to believe in the future. If we have come from nowhere, where are we going to?’ (Hall Carpenter Archives 1989, p. 1). Similarly, Bryan Stephenson, writing about the continued discrimination against black people through the US criminal justice system, observes: We can’t change our past but we can acknowledge it and use this understanding to better shape our future. But that won’t happen until we look squarely at our history, and commit to engaging with the past that continues to haunt us. (Stephenson 2017, p. 3) In England and Wales, as recently as 1970, 55,000 people with learning disabilities were living in long-stay hospitals (DHSS 1978). These large institutions, each accommodating up to 2,000 people, were usually built in the countryside, resulting in people being separated from their family, friends and familiar community. Once admitted, people were often unable to leave for many years. Many remained in hospital until they died, buried in unmarked graves within the grounds of the institutions (Todd and O’Driscoll 2009; see also Ingham 2019, this volume). Yet in the early 21st century, this area of UK and international social history remains largely hidden, under-reported and all too often overlooked. It is still not included in the UK school curriculum. Findings from the Madhouse project (Walmsley et al. 2017) and elsewhere (Barker et al. 2015) indicate that a younger generation of learning disabled people are unaware of this aspect of their collective history and that this lack of knowledge is shared by the general public (Atkinson and Walmsley 2010).

38  Ledger, Walmsley and Access All Areas How come we didn’t know all this stuff happened? was a searching and timely question raised by a member of Access All Areas during our visit to the site of Harperbury, a former long-stay learning disability hospital, as part of the Madhouse programme to teach people about the history of institutions. This man, then in his twenties, had recently completed secondary education in a special school, yet had not been aware that thousands of people with learning disabilities from an earlier generation had experienced segregation from the rest of society in this way. In this chapter, Madhouse participants explain why they feel it is important for people with learning disabilities to have the opportunity to reconnect with this aspect of their cultural heritage and to play a leading part in curating and sharing it. Our experience of working with the Madhouse project has demonstrated how engagement with the history of institutional care can create a platform for people with learning disabilities to reflect on their own experiences and ask the question, ‘Has institutionalization ended?’ Understanding what preceded long-stay institutions also presents a powerful case for how society could be different, counteracting those who ask whether social inclusion is an achievable goal. Jarrett (2015) argues that before institutions were built people with learning disabilities lived within their communities and that exclusion is a phenomenon born out of the segregated institutional movement: The modern concept of community is based on an assumption that people with learning disabilities have always been excluded. In the collective memory, it has been forgotten that they were, before the asylum, natural members of community embedded within social, economic, and familial networks. It is communities themselves that must adapt and remodel rather than trying to remodel those people they originally excluded. (Jarrett 2015, p.107) Goodey (2015), too, argues that an understanding of this historical perspective is critical to freeing up professionals to consider more widely the many varied roles people with learning disabilities can fulfil in society and to more creatively explore future possibilities outside services. At the start of the Madhouse programme, we were introduced to performance artists with learning disabilities who knew nothing about the existence of former long-stay hospitals. In putting together a programme of events to teach people about the history of learning disability and long-stay hospitals, our aim was to find a way of transferring knowledge about the institutions to the next generation – in addition to encouraging the next generation to become curators and custodians of their own cultural heritage as a platform for future activism. This was an activist goal openly shared between ourselves as academics and performers as we embarked on a series of institutional history workshops in the autumn of 2015. The teaching programme was developed by Jan and Sue. It consisted of five sessions and covered the history of learning disability institutions from 1840 to 2011. A project guide provides detailed information and session plans (Access All Areas, Ledger and Walmsley, 2018).

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The voices of people with learning disabilities who directly experienced institutional care are often overlooked in the telling of social history. Jan and Sue designed activities to redress this balance, drawing substantially upon life story and oral history material gathered through research projects in which people with learning disabilities shared their experiences of institutional care. In this way, the workshops supported dialogue and comparison between the experiences of past and present generations. Central to the history workshop programme was the film ‘No Longer Shut Up’ (2015), produced by Access All Areas with Advocreate to tell the story of Mabel Cooper’s life and campaigning work. The film, available on YouTube, introduces themes of labelling, resistance, institutional life, segregation of men and women, and control exercised by staff. This was watched by every participant before the first workshop. Access All Areas staff also supported their participants to access online photographs to give an idea of the exterior and interior of long-stay hospital buildings. Workshop 1: visit to Harperbury The first workshop was a visit to the site of a former long-stay hospital. Many such hospitals have now been demolished and, because they usually occupied remote scenic locations, many have been replaced by upmarket housing developments. There are a few remaining and one of these was Harperbury Hospital in Hertfordshire, where people from north and west London were sent. At the time of our visit (2015), it was possible to access the site on public rights of way and walk around the almost derelict buildings. The tour was led by historian David O’Driscoll, who has researched the history of the hospital (O’Driscoll and Walmsley 2010). From him, participants learned that people had needed a pass to leave the ward, that relationships between men and women were forbidden, how patients did a lot of work for very little or no pay and how some had tried to run away. David’s story about some patients hijacking an ambulance was particularly inspiring to people. This group of performers from Access All Areas were able to look at the former buildings and, from a nearby public footpath, pick out the wards, shop, occupational centre, staff quarters, chapel and the mortuary. Stimulated by being in the environment, the questions came thick and fast. How come we didn’t know about all this stuff? Why did they go there? What did people wear? What could they buy in the shop? Could they have children? Were people drugged? What was the food like? What about their families? Perhaps the most chilling moment was walking past the mortuary. People were expected not only to live there but also to die there. In the grounds of the old hospital we acted out, men on one side of the central path, women on the other, what it might have felt like to be physically separated by gender, living in separate wards in different parts of the hospital, as David described. A film crew accompanied the actors to record this part of their learning and can be viewed on the Madhouse Wiki website (Access All Areas n.d.).

40  Ledger, Walmsley and Access All Areas Here are some of the reflections from Access All Areas performers at the time of the visit. TERRY: 

It was emotional because we were told stories about patients. I felt a real connection towards the patients. PAUL:  Going to Harperbury Hospital it made us get into the minds of how people must have felt living there. I noticed how the men and women were separated which made me feel so alone and isolated. CHARLENE:  I couldn’t really have imagined this. I felt it deep down in myself. CIAN:  It makes you think coming here. In some way, although they have knocked down the walls, in some ways they are still here. People like me can’t always go out because we don’t have the support or the money. Many of the people who had come on this visit described it as the most powerful part of the project. Workshop 2: reconstruction of a hospital experience The second teaching session was held at the Barbican Pit Theatre in London. We used the large performance space to recreate for the actors a feel of institutional life. A screen projected a huge picture of a hospital ward, and masking tape was used to mark out 13 hospital bed spaces on the floor. Workshop facilitators wore white coats and carried keys. A sound recording of doors closing and keys turning played as participants entered the theatre workshop space. We served tea from an urn in which milk and sugar were pre-mixed – no choices, just as it would have been in Harperbury or St Lawrence’s. As each person entered they were handed an old-fashioned suitcase – the type that could have been used by patients, children like Mabel Cooper and adults, as they entered a long-stay hospital. Each suitcase contained an excerpt from a life story, a medical record and an object reflecting an aspect of institutional life. The objects were chosen to provide a range of sensory experiences, smells and sounds, alongside elements of communal living, such as bath thermometers, carbolic soap, syringes, communal clothes and toothbrushes. During the workshop, these suitcase contents were used to support teaching and creative improvisation. To provide historical context, we showed Present in My Past, produced by Purple Patch Arts (2018), an animated summary of learning disability history produced by people with learning disabilities with support from the University of Leeds. We also showed excerpts from a documentary entitled Silent Minority originally broadcast on British television in June 1981 (British Broadcasting Company 1981). The film shows conditions experienced by residents at two hospitals, including St Lawrence’s Hospital in Caterham, Surrey, where Mabel had lived. These were followed by a question and answer session. To support people to understand the sequencing of events, we created a timeline floor puzzle, where people built a timeline by putting events in date order,

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starting with pictures of the Royal Earlswood, one of the earliest institutions, to the Panorama programme on the abuse of inmates at Winterbourne View in 2011. Pictures of Martin Luther King, The Beatles, Sex Pistols, Barack Obama and Bob Marley were added to encourage participants to think about what might have been happening in the world outside the institution at the time. We shared recordings of protest songs composed and sung by people living in long-stay hospitals (Ledger and Shufflebotham 2006, Ledger and Ingham 2007). We talked about the lyrics and then sang these together. In response to the objects and suitcase stories, participants – all Access All Areas performance artists – improvised pieces inspired by the stories and objects. These first performance pieces responded to the objects in the suitcases clustered around three themes: work, keeping clean and punishment. Workshop 3: visit to a public archive The third workshop involved a visit to the London Metropolitan Archive (LMA) in London. Here people met with LMA staff and completed a tour of the archive. Members of Access All Areas learned about where some of the records from the London institutions were kept and how to search them. It was the first time any of the group had been to an archive. After seeing the film of Mabel Cooper’s life, people were particularly interested in researching St Lawrence’s Hospital where she had spent 20 years. The archive officer demonstrated how to find the records

Figure 3.1 Looking at records from St Lawrence’s hospital. (© Sue Ledger, courtesy of Access All Areas.)

42  Ledger, Walmsley and Access All Areas by entering the name of the hospital. This search revealed photos, letters from patients and records written by superintendents running the hospitals. PAUL : 

Visiting the archives was really enlightening to find the books and online resources that were there. We found a connection with those who came before us and found that our lives were similar and different. It felt professional learning how to do research and find out information about the past.

Workshop 4: oral history and interviewing skills The next workshop series was a session where workshop participants learned how to conduct a research interview. We showed interviews with former longstay hospital patients undertaken in Scotland in 1996 as part of an earlier Open University course. We used these to explore what makes a good interview. We considered open and closed questions, how the interviewer responded to emotion, the danger of people misunderstanding the question, the extent to which gender played a part in creating empathy between interviewer and interviewee and the standard practice of the interviewer not sharing his or her own experiences. Participants then practised asking the type of questions people might want to put to former residents of learning disability institutions. The practice sessions were filmed and we discussed what people had done well, and what less well. It was striking that the interview seemed to work better when interviewers deviated from standard academic practice to share their own experiences! We used the session to discuss consent, ethics, storage of data and confidentiality. Workshop 5: interviewing former hospital patients The interview training was consolidated in a final history workshop, where participants interviewed a panel of people with learning disabilities. The panel consisted of two former long-stay hospital residents, both in their eighties, who had lived for many years at St Lawrence’s Hospital. They were joined by two younger panel members who had recently spent time in Secure Hospital Units for people with learning disabilities, after being labelled as ‘challenging’. Drawing on their interview training, performers from Access All Areas carried out interviews, which were filmed with the participants’ consent. Responses from these former residents as they described their daily lives, including food, contact with friends and family, and the restrictions encountered, further informed the performers’ creative responses. Following the workshops, five participants with learning disabilities elected to train as learning disability history workshop leaders. Their development as workshop leaders was supported by the theatre company and involved designing activities and games to share institutional history. A game based on shared toothbrushes was inspired by learning that residents at some hospitals did not have their own toothbrushes but had to take one from a batch shared by everyone on the ward.

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These five workshop leaders then led sessions as part of a public education programme based at Hackney Museum. Feedback For the majority of participants, the session where they felt they learned the most was the visit to Harperbury Hospital. All commented on how powerful the visit had been. People emphasized the emotional connection they had felt with former patients. This response was encapsulated in this quote from Jolene Sampson: ‘for me coming from north London it was quite frightening. I felt if it had been in the old days I would have been there too. I really felt I could have been one of those patients’ (Sampson 2017). People also felt it was valuable to interview hospital residents, to hear firsthand about what it had been like to live in a long-stay hospital and to hear from people who had more recently been admitted to modern-day institutions. People enjoyed the hospital songs written by an earlier generation of people with learning disabilities. Hearing the voices of people who had actually lived in the institutions acted as inspiration for participants to compose their own song of resistance. As one of the composers said, The Cocoa Song [shared as part of workshop 2] demonstrated that we won’t go quietly – we won’t shut up and we have the right to speak up. We made the song ‘Trapped Rhythms’, we brought the Cocoa Song into the current time and will help people get a better understanding of what we want, and what must be changed for us to have a better life. ‘Trapped Rhythms’ Defective, broken, better Stick them in there Lumpy tapioca. Toothbrushes They have to share. Doctors on a mission, Watching every move Romance at the dance? Only If you were real smooth They’re trapped, no use Because I’m going home (yes man, listen now!) I can choose to go home We got our own rhythms You can take them or leave them We’ve got our own rhythms You’re playing with our freedom

44  Ledger, Walmsley and Access All Areas Try to escape they wanted Something more Take a pill for punishment. Get Down and scrub that floor. I swear…No more. Little hidden shames you Had them labelled. Too harsh to get. We’re all fully abled. Listen now – we’re showing you how. Because I’m going home (yes man. Listen to me) I can choose to go home. The film can be viewed on YouTube (Access All Areas 2016). The upsetting nature of much of the content was acknowledged but people were unanimous in their belief that this history should have been shared with them earlier. They felt that finding out about history had helped them to make connections between the past and the lives of people labelled as disabled today. Taking part as a group enabled people to support each other. Responding to history The fact that thousands of learning disabled people in the UK used to live in institutions was a shocking revelation to all the Access All Areas performers who participated in our mixed-media programme. The people who had attended the workshops were supported by Access All Areas creative enablers and staff to respond by developing immersive performance pieces and by becoming trainers, researchers and curators of learning disability history in their own right. To date this has resulted in: •• •• •• •• •• ••

an interactive museum exhibition, described in the next section history workshops for people with learning disabilities a wiki website rap video ‘Trapped Rhythms’ educational resources for schools immersive theatre performances in prestigious theatre venues in London and Manchester.

These varied formats aimed to share the history of institutional care for people with learning disabilities with the wider public. The next section of the chapter discusses one of these responses, the museum exhibition, in more depth and reports findings from its evaluation.

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Madhouse, My House? museum exhibition Learning about the long-stay hospitals inspired participants to curate a museum exhibition to increase awareness of this hidden history. The exhibition, co-curated with Hackney Museum, London, was a collection of memories and responses to the institutionalization of people with learning disabilities. The aims were: •• ••

to engage the general public in learning about what had happened to a large number of learning disabled children and adults in the UK very recently to work with the next generation of people with learning disabilities to increase engagement with this aspect of their own history.

With a focus on the lives of two former residents of St Lawrence’s, Mabel Cooper and Harvey Waterman, now a member of Access All Areas and personally known to the workshop participants, the exhibition used interactive installations, objects, film, photographs and documents to tell the story. The exhibition featured the responses of our workshop participants to aspects of the history. This not only helped visitors understand what they were seeing but also gave insight into how younger learning disabled people feel about the fact that this is how an earlier generation were labelled and put away.

Figure 3.2  An exhibition installation of mattresses, used to present historical information and to explain what happened when in the lives of former hospital patients Mabel Cooper and Harvey Waterman. (© Sue Ledger, courtesy of Access All Areas.)

Figure 3.3 Poster advertising the Madhouse museum exhibition. Workshop participant reflections on what they had learned, featured in the exhibition. (© Sue Ledger, courtesy of Access All Areas.)

Figure 3.4 Exhibition installations of pill bottles with labels ‘To shut you up’, ‘To keep you regular’ and ‘To stop babies’. (© Sue Ledger, courtesy of Access All Areas.)

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Evaluation of the exhibition We undertook a formal evaluation of the museum exhibition. The questions we asked were guided by the people who had attended our workshops. They were keen to draw comparisons between institutional life and isolation and the contemporary situation for people with learning disabilities, and to influence museum visitors to take some action. The questions they wanted us to ask included: •• ••

Do you think things have changed for people with learning disabilities since Mabel and Harvey were shut away? Is anyone still shut up, do you know? Is there anything you could do to change things for people with learning disabilities?

Over 8,000 people visited the exhibition. We interviewed 18 members of the public and one further written response was received from a visitor. Interviews were recorded and transcripts were systematically analysed to identify key themes from visitor responses. Our findings are presented here. Six people said they knew nothing about learning disability before they visited the exhibition, nine said they knew a little and three knew a lot. The following factors were identified by visitors as strengths of the exhibition: In a small space it shared a hidden history that is not taught in schools and not widely known about. The exhibition is concise and powerful. It gives only a sample of what happened at that time in those places: crowded wards, toothbrushes sharing and pills for sterilisation are only some of the treatments that Access All Areas shows us. I didn’t realise how awful things had been in this country. I hadn’t really thought about it you know. It’s a bit like the Nazi regime – taking people away. It surprised me to see the photograph of an institution – a place that by itself accommodated 2,000 people. I hadn’t realised that inside there were shared bedrooms of 50. Shared bathrooms too. There was no privacy. I was really shocked at how clinical and medical they looked, the pictures inside the long stay institutions. I was also unaware of the terrible labels we used not that long ago. I found that really shocking. Sterilising the women. That was quite shocking to me. Residents were made to wear slippers to discourage them from escaping – a form of control that goes on in care homes today. Visitors were impressed that the workshop participants had been actively involved in putting on the exhibition. The exhibition shows young disabled people capable of and effectively doing ‘serious research’.

48  Ledger, Walmsley and Access All Areas What stands out is the amount of work people have put into the exhibition, the amount of interviewing in the films, a serious research project. The installations made the history very accessible and easy to remember. Interviewees were also asked what they thought about the lives people with learning disabilities lead today. Analysis of responses to this question identified two key themes: (1) It’s not like that anymore. Respondents in this cluster indicated that they felt that institutionalization was very different to the current situation where people are given a chance. Respondents in this group appeared to be subscribing to a more linear view of history perceiving it as gradual progress towards improved lives. (2) There are still many without opportunities … the institutions are gone but attitudes are still not good. A second set of responses highlighted that learning disabled people remain hidden from the world and there is still a long way to go if people are to be genuinely included in society. It was people who already knew about learning disability today who tended to subscribe to this more pessimistic view. I think there are definitely a lot of improvements since the time when Mabel was in the long stay institution but there is still a long way to go. And there are some really uncomfortable parallels I think with how life was for Mabel. I think some young people and some adults experience terrible injustices and prejudices today. Access All Areas members wanted us to challenge members of the public to consider what they could each personally do to enable people with learning disabilities today to have better lives. Each interview concluded with the question, ‘Is there anything you could do to change things for people with learning disabilities?’ Responses indicated that this prompted some people to commit to taking some personal action. I’m retired now but I support events such as this exhibition and local people/ groups where I can, in particular to help people tell their stories. An employer of people with learning disabilities said she could commit to doing more: I now employ 16 people but I could work harder to offer employment to more people! Someone who had known little before attending the exhibition made this commitment: I can speak to my daughter who is 12 and explain that people with learning disabilities are like us, they have feelings and must be treated with respect.

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For some respondents, however, being asked what they could do seemed more challenging, with people being unsure as to what their role could be: I can find out more about it and perhaps see where I can help. That’s something for me to think about! Maybe supporting events and performances and things that are going on. Responses like this indicate that people who were interested in offering their support after visiting the exhibition needed further guidance as to how they could personally contribute towards greater inclusion for people with learning disabilities today. From this small sample, the evaluation team concluded that the exhibition was effective in conveying a sense of institutional life and that it foregrounded the curation roles of disabled participants effectively, but that too little information about the present situation (for example Assessment and Treatment units, premature deaths, out-of-area placements and segregated 52-week boarding schools) was provided in the exhibition to enable people to make an informed response to questions about how much has changed, or what they as individuals might be able to contribute (Arnold et al. 2018). Further guidance was needed for members of the public who, after visiting the exhibition, were interested in engaging with activism for change.

Conclusion This chapter has reported our working together as part of the Madhouse project. It has explained the methods two academic researchers used to share the history of long-stay learning disability institutions with people with learning disabilities. Through the Madhouse museum exhibition, workshop participants, supported by staff from Access All Areas, shared a previously hidden history and raised with a wider audience the question of whether the closure of long-stay hospitals has ended institutionalization, or if contemporary isolation at home, in the face of increasing austerity cuts in services and support, has similar physical and mental effects. In this way, the Madhouse programme engaged with history to explore and challenge the existence of the invisible asylum (Cox 2017). The museum evaluation showed that sharing of institutional history can provide a platform to raise public awareness and promote public engagement with people with learning disabilities. As the continuing UK austerity programme results in further cuts in support for learning disabled people to lead fulfilling lives (CRPD 2016), an understanding of history is arguably of increased importance. The evidence emerging from the evaluation to date highlights the potential contribution of arts-based activism projects grounded in historical understanding (Walmsley et al. 2017). The final word goes to workshop participant Paul, also a performer with Access All Areas and a member of the evaluation team: As an Access All Areas performer I have been part of all the Madhouse process from the history workshops to the exhibition to the immersive theatre

50  Ledger, Walmsley and Access All Areas and I would say it has been important for us to get a better understanding of our lineage. To share our history more broadly with people and to give young people with learning disabilities and other people without disabilities the chance to talk about it. The contrast between then and now. Asking what has changed and what has not. Meeting people. The public that came to the museum. Showing people all the things we can do and that we can do more … Most people don’t think about ‘us’ very much …

References Access All Areas, no date. Madhouse Wiki [online]. Available from: https://wiki.rixwiki. org/Default/home/my-big-wiki/access-all-areas/ [Accessed 24 December 2018]. Access All Areas, 2016. Trapped Rhythms. Film. Co-directed by Nathan Theys. Available from: https://www.youtube.com/watch?v=Unk1Mst7Lxw [Accessed 24 December 2018]. Access All Areas with Sue Ledger and Jan Walmsley, 2018. Making heritage accessible. The Madhouse, My House? history of learning disability project guide. London: Access All Areas. Arnold, Z., Christian, P., Ledger, S. and Walmsley, J., 2018. Is MADHOUSE achieving its aims? ‘Has institutionalisation ended?’ Presented at Madhouse symposium, Shoreditch Town Hall, London, 19 March. Atkinson, D. and Walmsley, J., 2010. History from the inside: towards an inclusive history of learning disability. Scandinavian Journal of Disability Research, 12 (4), 273–286. Atkinson, D., Jackson, M. and Walmsley, J. (eds), 1997. Forgotten lives: exploring the history of learning disability. Kidderminster: BILD. Barker, R., Moorhouse, E., Ackroyd, V. and Atherton, A., 2015. Present in my past – uncovering our social history. Presented at Biography, life stories and life histories: Social History of Learning Disability Research Group conference, The Open University, Milton Keynes, 18 June. Brigham, L., Atkinson, D., Rolph, S. (eds), 2000. Crossing boundaries: change and continuity in the history of learning disabilities. Kidderminster: BILD. British Broadcasting Company, 1981. Silent Minority. Film. Directed by Nigel Evans. Suffolk: Concord Media. Available from: https://www.youtube.com/ watch?v=oTu6nRlgIko [Accessed 24 December 2018]. Committee on the Rights of Persons with Disabilities (CRPD), 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. New York: United Nations. Available from: http://www.ohchr.org/EN/HRBodies/CRPD/ Pages/InquiryProcedure.aspx [Accessed 21 February 2017]. Cooper, M., 1997. Mabel Cooper’s life story. In: D. Atkinson, M. Jackson and J. Walmsley, eds. Forgotten lives: exploring the history of learning disability. Kidderminster: BILD, pp. 21–34. Cox, A., 2017. Escaping the invisible asylum. Bristol: Policy Press. Department of Health and Social Security (DHSS), 1978. Helping mentally handicapped people in hospital – a report to the secretary of state for social services by the National Development Group for the Mentally Handicapped. London: DHSS. Goodey, C., 2015. Why study the history of learning disability? Tizard Learning Disability Review, 20 (1), 3–10.

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Hall Carpenter Archives, 1989. Inventing ourselves: lesbian life stories. London: Routledge. Ingham, N., 2019. ‘We’re being treated as second-class citizens’: community, family and learning disability activists campaigning for dignity in death. In: K. Soldatic and K. Johnson, eds. Global perspectives on disability activism and advocacy: our way. London: Routledge, pp. 15–34. Jarrett, S., 2015. The meaning of ‘community’ in the lives of people with learning disabilities: an historical perspective. International Journal of Developmental Disabilities, 61 (2), 107–112. Ledger, S. and Ingham, N., 2007. Songs of resistance and their contribution to understanding the history of the self advocacy movement. Presented at Open University Social History of Learning Disability Seminar, 7 July. Ledger, S. and Shufflebotham, L., 2006. Songs of resistance. In: D. Mitchell et al., eds. Exploring experiences of advocacy by people with learning disabilities: testimonies of resistance. London: Jessica Kingsley, pp. 68–90. ‘No Longer Shut Up’: Finding Mabel Cooper’s Voice, 2015. Film. Directed by Nick Llewellyn. London: Advocreate and Access All Areas. Available from: https://youtu. be/BZAgOs4Ngn4 [Accessed 24 December 2018]. O’Driscoll, D. and Walmsley, J., 2010. Absconding from hospitals: a means of resistance? British Journal of Learning Disabilities, 38 (2), 97–102. Purple Patch Arts, 2018. Present in My Past. Film. Animated by Tom Hudson. Leeds: Purple Patch Arts. Available from: https://vimeo.com/130333304 [Accessed 24 December 2018]. Rowbotham, S., 1973. Hidden from history: 300 years of women’s oppression and the fight against it. London: Pluto Press. Sampson, J., 2017. Tour of Madhouse My House: an exhibition of memories and responses to the institutionalisation of people with learning disabilities. Presented at Madhouse Exhibition Opening, Hackney Museum, 2 February. Spencer, K. with Walmsley, J., 2006. I’ve had enough of the everyday thing. In: D. Mitchell et al., eds. Exploring experiences of advocacy by people with learning disabilities: testimonies of resistance. London: Jessica Kingsley, pp. 42–54. Stephenson, B., 2017. A presumption of guilt. The New York Review of Books, 13 July, p. 3. Todd, S. and O’Driscoll, D., 2009. Missed but still very much there: death and dying in an old learning disability hospital. Presented at Biography, families, history and learning difficulties: OU Social History of Learning Disability conference, The Open University, Milton Keynes, 9 July. Walmsley, J., Ledger, S., Christian, P. and Arnold, Z., 2017. Exploring the creative arts in learning disability history research. Presented at SHLD conference, Open University, Milton Keynes, 21 July.

4

The importance of disabled people being seen on our screens Sarah Barton

No other storytelling medium reflects who we are at any given time more ­compellingly than motion pictures. The act of going to the cinema or, more contemporarily, snuggling up for a Netflix binge, allows us to escape to and immerse ourselves in a world that enchants and often affirms who we are and where we belong in society. If we are white, we can relate to the vast majority of what we see produced in mainstream English-speaking film and television production industries. For people of colour, that sensation is a more recent phenomenon and still may not quite capture the essence of what it’s really like to live in a society where most power rests with people who are white and male. Of course, not all the stories we consume offer a reflection of ourselves, yet there is an abundance of content that is pitched directly at white and able-bodied viewers. We may choose to watch Japanese or Indian films to gain insight into other cultures once the western style of dominant narrative begins to feel hackneyed or predictable, but to never see anyone like yourself on screen must be to feel invisible and unimportant. Motion pictures have become the dominant form of storytelling of our age and so diversity of representation, which has to date been lacking, divisive and unrepresentative, is important. When I was growing up in Melbourne, Australia, in the 1960s there was no Australian film industry. When the first films of the renaissance of Australian cinema brought the Australian accent to our screens in the 1970s, they sounded odd to our ears that were more accustomed to the American twang or clipped English. Gradually, however, seeing Australian life and characters more frequently on screen made us feel that we mattered, that our stories were worth telling, that audiences would be interested in them. Mostly they were male stories and, as women, we absorbed the message that our stories weren’t as interesting or important as men’s stories. The men told us so when we applied for funding to make films from a female perspective. They preferred the male stories and made them over and over again while avoiding and ignoring the vast spectrum of possible stories that could be told by women, people from culturally diverse backgrounds and disabled people. They kept making films with male protagonists, reflecting male experiences, where women at best played a supporting role.

Disabled people being seen on our screens  53 As a white, middle-class woman, I saw just enough people like me on screen to absorb the message that film and television could reflect who I was and my place in society. I never saw a story about a disabled person. At the age of 20, when faced with disability at close range, the drama of my situation felt as intense as a movie yet I had no reference point for what might happen next. I didn’t know it at the time but this moment of realization was to play a pivotal part in my filmmaking career and would steer me into a niche that I would make my own. Fate threw disability into my path a couple of times and provoked a desire in me to contribute to social justice through better representation of disability and disabled people in our film and television stories. The first years of the 21st century have ushered in a technological revolution that will be noted in history as a catalyst for all kinds of disruption, development, creativity and chaos. Following on from the democratization of digital video production in the late 1990s, the invention of the iPad, smartphone and the various social media platforms have fundamentally changed the way we interact socially and the way we consume media content. In response to this, the last few years have seen a fundamental change in the way that media content is produced and distributed, with the power of the big media players diminished – if only temporarily – and small, independent media producers now with the potential to reach audiences that in the past were barely imaginable. These new social media platforms and cheaper media production tools offer the promise of greater diversity in the stories that we tell and the faces that we see on our screens. In an attempt to remain relevant, the gatekeepers of traditional media, our broadcasters and distributors are starting to take notice of calls for greater diversity in our storytelling media. Remarkably, disability activists have had to lobby to be included in the diversity agenda, which should encompass the breadth of humankind beyond the heterosexual, able-bodied, white male but, astonishingly, sometimes can be narrowly defined as including just ‘women’. Since the 1960s, various groups with interests in film and television production have, from time to time, found it necessary to lobby the government for cultural and industrial protection via Australian content regulations as politicians have sought to deregulate the screen sector. These screen practitioners argue not only for the support of their own industry but also that seeing ourselves as Australians on screen is a matter of national interest. At a recent ‘Make It Australian’ rally of screen industry professionals, director Gillian Armstrong posed the question: What is so important about a national culture? It’s our IDENTITY as AUSTRALIANS. It is what makes us unique: Our language, – ‘you’re a awful Muriel, lookatmeKimmy, that’s a knife … goodonyamum … You’ve got to be dreaming … you’re dropped …’ Our idioms. Our character, our diversity, our rather special humour, and outlook on life … Having a go. A FAIR GO! Let’s keep reminding everyone of this. (Armstrong 2017)

54  Sarah Barton Interestingly, the examples she invoked in her speech are not very diverse. The protagonists are all white, cisgendered and non-disabled but they are seen as quintessentially Australian. As Australian media producers mount yet another battle to see off US cultural imperialism through calls for minimum Australian content quotas across mainstream broadcast and video-on-demand platforms like Netflix, the BBC and Channel 4 in the UK have already introduced guidelines that demand quotas for diversity in ability and cultural background (Hemley 2015). Australian broadcasters have been slow to look seriously at diversity quotas that address disability. SBS’s charter (SBS n.d.), while explicitly promoting cultural and linguistic diversity, does not contain any reference to disability. In August 2017, the Australian Screen Diversity and Inclusion Network was launched and a number of screen agencies signed up (Knox 2017) with a commitment to increased diversity, though with little explicit reference to disability. It was only intense lobbying by the disability community behind the scenes that ensured disability groups were present and included in this initiative. A handful of Australian shows have recently featured overtly disabled characters; Neighbours and The Wrong Girl come to mind. In both cases, the disabled character is a supporting role, a wheelchair user played by a non-disabled actor. Their impairment is limited to an inability to walk which, in the world of disability, amounts to what the late Stella Young would have referred to as a ‘vanilla type of disability’, nothing too complicated or confronting. In addition to this, the barriers faced by these wheelchair-using characters are kept to a minimum. In The Wrong Girl, Vincent (played by Hugo Johnstone-Bird) believes he is so repellent that Simone (Hayley Magnus) cannot possibly be attracted to him because he is paralyzed and, presumably but not explicitly stated, unable to attain an erection unaided. This kind of simplistic characterization of disability does little to advance understanding of the barriers faced by disabled people. We never see Vincent unable to hail a wheelchair-accessible taxi after a night on the town. We don’t see him unable to attend his friend’s bucks night because no one thought to book an accessible venue. These are the missed opportunities that reveal the limited experience and expertise about disability in the writers’ room. The commitment to disability so far is minimal. The role is played by a non-disabled actor and the character is so minor that the narrative never truly delves into the realm of what it’s really like to be disabled. The social isolation of disabled people is exacerbated by poor access to public transport and infrastructure. In one example, Robin Eames writes about her time at the University of Sydney: This year, my professor refused to move his lectures to a wheelchair accessible building, despite having been informed about my access requirements before the start of semester. He had assumed I’d dropped out, because I hadn’t shown up to the room I couldn’t get into. (Eames 2017)

Disabled people being seen on our screens  55 In addition, there is an ongoing tendency to segregate disabled people into day programmes operated by disability service providers. Disabled people also experience high unemployment rates. Labour force participation rates for people with disability in Australia are low. In 2012, the labour force participation rate for people with disability was 52.8%, compared with 82.5% for people without disability. This figure has changed very little over the past 20 years. (Australian Human Rights Commission n.d.) The reality is that many disabled people are isolated and marginalized because they are not routinely included and accepted in society. Families learn how to accommodate and include family members with disabilities in their midst and some do it better than others, but what we do not see in regular family dramas on our screens is the autistic teenage son, the daughter or sister with Down syndrome, the uncle with cerebral palsy. We don’t portray families who are inclusive nor do we portray families who shun their disabled family members, and so we collectively absorb the message that disabled people do not count, that their stories are not worth telling. In the world of television drama, these systemic barriers are hard to get excited about and many of those working in the industry have no insight into the dramatic possibilities this perspective could offer. My own interests in disability and disability rights and inclusion have for the most part defined my work as a filmmaker over my 25 years in the industry. In 1994, I made my first documentary, Untold Desires, which looked at sexuality and disability in all its diversity, from the mechanical to the sensual, to the romantic and intimate lives of disabled people. The film broke new ground and although it opens with a disabled man’s visit to a brothel it soon moves into an exploration of intimacy, sexual identity, relationships and parenting rights for people with disability. While sex is an important aspect of adult life, the need for meaningful relationships is universal and this is the overriding message of Untold Desires. Untold Desires was inspired by my own relationship with my ex-husband, who had acquired a serious brain injury following a hit and run road incident. After the intensive period in hospital, it gradually became apparent that he was going to be disabled for the rest of his life. Although we were recently estranged at the time of the incident, I decided it was important that we maintain a relationship as he was going to need all the friends he could get, especially as every single friend he had at the time vanished within days of his admission to hospital. Over many years of visits (most of which were closely supervised by his parents), we developed a new relationship and affection. I was struck by how isolated he quickly became because no one (myself included) had any idea how to relate to him following his brain injury. Although I wasn’t a filmmaker at the time, I was influenced by film and television narratives as a reference for how to live my life. That seems baldly naïve to me now, but I know that the absence of narratives about disability led me to believe in the early days that he would either die or

56  Sarah Barton recover. There were no other options available to my mind. I had no knowledge or framework of information that would suggest any alternative possibility. Other disabled friends have expressed similar ideas. Dr George Taleporos, a friend and colleague, once said to me, ‘When I was young I never saw anyone on television like me and I grew up believing that I was either somehow going to lose my disability or simply disappear altogether’. Untold Desires won the first Logie Award for SBS in 1995 and screened around the world for many years. Disabled people in particular loved the film because their experiences of sex and love were seen and heard for the first time. Untold Desires first went to air on 3 December 1994 to coincide with the World Assembly of Disabled People International, which was held in Sydney. I’m told that many of the activists present at the assembly tuned in to the broadcast in their hotel rooms that evening and that the film was the talk of the conference the following day. In the years following Untold Desires, I continued to make documentaries about social issues, including a film about anxiety and obsessive-compulsive disorders in 1997 called Secret Fear. By 1999, I had drifted away from disability and was making A Wing and A Prayer, a film about Muslim women from the Horn of Africa and how they settled into life in Melbourne. My daughter Stella was born just a few weeks before we began shooting. Her birth was not straightforward and she was deprived of oxygen for nine minutes. She spent two weeks in hospital in intensive care and some months later she was diagnosed with cerebral palsy, a condition resulting from a brain injury that happens at or around the time of birth. For much of the film shoot I carried my baby around in a papoose and the African women cooed over her and complained that she smelled too clean. The diagnosis and subsequent parental grief and intensive therapy came much later when she was diagnosed at ten months of age. Suddenly I found myself thrust back into the world of disability and I felt that I’d been given a responsibility to return to the topic with my film work. Within a couple of years I was making a short documentary for the Association for Children with a Disability, an organization set up to support parents of children with disabilities as they navigate the world of support services and unexpected barriers. That film, Sharing Our Story, brought together five families with children with a range of disability support needs sharing their experiences with a view to helping new families navigate this new world of disability. The film was such a valuable resource for the organization that they commissioned me seven years later to revisit the same families and see how their lives had progressed. The very real struggles that the families were facing in the revisited version were impossible to hide and the association worried that if new families were to see the latest film, it would prove to be far too depressing for them. The optimism of the early days with young children had been replaced by a bleak reality of the struggle for inclusion and meaningful purpose for the children who were now approaching young adulthood. Not all the stories were negative but there was enough to make advocates wary of extinguishing hope in new parents, and for this reason I don’t think the revisited version of the film enjoyed quite the same popularity or usefulness of the original.

Disabled people being seen on our screens  57 Around this time I received a call from my friend Greg Dee who had just been appointed general manager of C31, the local Melbourne community television station. Greg’s son Lucas has Down syndrome and he was horrified to see that while C31 had a strong track record making culturally diverse programmes, they did not have a single programme focused on disability. At this point I think it’s useful to consider the concept of ‘culture’, which is most commonly associated with ethnicity but is increasingly broadened to include, for example, sexuality and gender identity. Yet to date there has been little understanding of disability culture among mainstream arts and media practitioners and commissioners. Although it certainly exists, it is not widely known outside disability activist circles. Disability art, for example, is distinct from disability in the arts, ‘which refers more to the active participation or representation of disabled people in the arts rather than the context of the work being about disability’ (Wikipedia 2018). The Disability Arts movement arose in the 1970s and 1980s in response to evolving notions of disability as a social construct, commonly known as the social model of disability. The social model asserts that it is societal barriers, such as the lack of a ramp or a hearing loop or an image description, that cause disability rather than a person’s individual impairment. It shifts the responsibility for disability away from the individual and onto society, which it asserts has a collective responsibility to remove barriers and thus allow greater inclusion of disabled people. This is the central premise of my most recent film, Defiant Lives (2016). Not every disabled person is willing to embrace the concept of disability culture being something to be celebrated. Many cling to the idea of disability as a personal tragedy, a line that has been heavily peddled by disability charities in their annual fundraising drives. There are often marked differences in the way that people who have lived with disability all their lives perceive disability compared with those who have acquired their impairment later in life. Those who can compare a life before and after disability often grieve for many years and cannot embrace something that they can only see as negative and deficient. This also often happens with parents of disabled children who cannot let go of the ideas of who their child might have been and embrace who their disabled child actually is. For many people, acceptance comes over time and they grow to value the experience of disability but people need time to reach this point. I often wonder if they would grieve less if they had better disability narratives to refer to through greater portrayals of disability in all its rich diversity. The existence and availability of a thriving disability culture and community can actually assist people to feel more comfortable with who they are but they must be able to approach and participate in that culture on their own terms. Attending a day programme for disabled adults run by a disability service provider is not the same as participating and embracing disability culture. There have been many Australian pioneers who work in the disability cultural space. Arguably the most well-known success at crossing over to global mainstream acclaim is Back to Back Theatre, based in Geelong, but their success is rare and many other groups

58  Sarah Barton have struggled to survive in a harsh economic climate where there’s a tendency to believe that one disability-focused arts organization is all we need. When I was approached to make community television, it looked like a step backwards and I took some persuading to give it a go. Greg believed we could raise some money for the show so that I could earn a modest fee for the job, unlike most other producers who worked largely as volunteers. A few months later, the Reichstein Foundation gave us A$20,000 and our show, No Limits, was on its way. At this stage we needed to get some actual disabled people involved. We wanted a show that was presented by disabled people about issues that mattered to them. My plan was to create a pool of regular hosts, three of whom would host each show. Our set could comfortably seat five people so each segment involved the three hosts talking to one or two guests. I did all the work behind the scenes researching stories, finding guests and briefing our hosts. I wanted to make the show an accessible experience for disabled hosts but I didn’t really have much of a clue about disability outside my own episodic experiences witnessing my exhusband and his brain injury, making Untold Desires and in my role as a parent of a still very young disabled child. Untold Desires has always been held in high regard in disability circles and that film proved to be my best calling card for the role of series producer of No Limits. In those days there was barely anything being made in Australia about disability. In 1998, Heather Rose and Rolf de Heer had made the feature film Dance Me to My Song, which was possibly the first film about disability since Annie’s Coming Out more than a decade before that. We were part of a very small oeuvre of programmes about disability. It was and remains a topic that’s fiendishly difficult for funders to get excited about. Yooralla is one of the biggest disability service providers in Victoria and I had worked with people from their Living and Learning Centre in 1994 when I was making Untold Desires. They had some great people there and arranged for us to use their edit suite for the edit of that film, which saved us considerable money. By 2003, the Living and Learning Centre was largely gone but there were still some people there interested in community engagement and media production. A few years earlier, disabled people from Yooralla had teamed up with SKA TV (St Kilda Access TV – one of the member organizations of C31) to produce a disability show in the mid-1990s called Challenge. One of the highlights of that show was that they covered several public transport access protests in the mid1990s which had been led by the provocative disability activist Katie Ball. Peter Johnstone, who had helped with the video editing on the show, was excited to see disability television back on the agenda at C31 and happily agreed to get involved and help with our editing. Later, when I was making Defiant Lives, I was able to access the old public transport protest footage through Peter and the contacts I had made during No Limits. We’d had a meeting at the Yooralla offices to begin finding the cast for No Limits. A young woman named Caroline Bowditch was recommended as a possible key host for the show so we invited her to that meeting. She explained that she was completely unavailable as she was about to move to England to get married.

Disabled people being seen on our screens  59 I was disappointed because Caroline seemed exactly the kind of person we needed on our show. She suggested that we contact a young woman she knew who was studying teaching but might be persuaded to do a bit of community television. Her name was Stella Young and it took me months to track her down. I didn’t know it at the time but Caroline had been a mentor to Stella throughout her teens and they were very close friends. Everyone who knew Stella suggested that she’d be perfect but I didn’t have a phone number for her and she wasn’t responding to emails because she was too busy studying. She was young and smart and was clearly out getting on with her life, studying at Deakin University in Geelong and spending the rest of her time with her family who lived in Stawell, about four hours’ drive from Melbourne. Meanwhile, we needed more faces for our team of disabled presenters. I approached Janice Florence, who performed the closing dance in Untold Desires. She and her partner Trevor Dunn were keen to get involved and had some ideas for a comedy segment they would like to do as well as appearing on our panel of hosts. Once the show got going, Janice and Trevor settled into a segment they created called ‘The Lovelorns’. Acacia and Limbo Lovelorn were two hopeless hippy agony aunts who responded to fake letters of despair from people frequently facing disability access issues. Looking back now on those segments, they are sometimes hilarious and often just delightfully dippy and silly. It felt important to have comedy in No Limits to set the tone that this was not a show about tragedy. Dr George Taleporos had written his PhD on sex and disability and our shared interest in this topic meant our paths had crossed when he was completing his doctorate. George had been a finalist in the Raw Comedy competition, which was part of the Melbourne International Comedy Festival in 2002, and this recommended him as talent for our show. Others who joined the show in those early days were John McKenna, who wanted to go by the name of Macca; Sara McQueenie, a performer from Bendigo; and singer Tim McCallum, who is now an internationally renowned singer. Tim had broken his neck diving into surf on his first day in Perth as a student at the Western Australian Academy of Performing Arts. In an instant all his dreams of becoming a star of musical theatre evaporated, and he joined our team a couple of years later as the only member with an acquired disability, something that led to numerous arguments on set between Tim and Stella. At that stage I didn’t fully appreciate how different the experience of disability can be when you’ve been disabled from birth compared with when you acquire a disability later in life. Stella had had a lifetime to develop her identity as a disabled woman while Tim was grappling with the early years of a life he never imagined and an uncertain future for a young man. When Stella Young finally materialized in Melbourne, I knew that we had found our star. Stella was smart, sassy and had a great sense of humour. She was this television producer’s dream. Her disability was immediately visible, which sounds and is completely crass but for television was an important factor. There’s a good reason why people with invisible disability complain about not getting the attention people with visible, physical disabilities get. When you don’t

60  Sarah Barton look disabled there’s a great deal more explaining to do about the impact of your impairment and people sometimes don’t even believe that you have a real disability when it’s something they cannot see. Stella’s physicality, on the other hand, was unavoidably disabled and she had a smart mind, an interest in disability as a political issue and a great contemporary look. Her mother was a hairdresser so her hair was a different style and colour every week and she loved fashion. No Limits first went to air in mid-2003 at 7:30 on a Monday night. It didn’t take long for us to find our feet and produce a reasonably high-quality show, and Stella was soon recognized as a talent to watch. A few weeks after the show went to air, Stella told me something that shocked me. She said she was accustomed to rude random strangers saying things to her when she was out and on the train. They usually went something like, ‘If I was you I’d kill myself – I couldn’t live with your disability’. When No Limits began broadcasting, she noticed a change and now people were more likely to come up and say to her, ‘I’ve seen you on TV. You’re so cool. I love your show’. This was the best news I could possibly have hoped for. We were making a difference to the way people thought about disability. We received quite a few emails from audience members who thanked us for making a show that taught them about disability when they’d known nothing about it. They could sit in the privacy of their own homes and watch something that educated as it entertained. Much later Jarrod Marrinon joined No Limits on the hosting panel. He’d been a teenager when No Limits first went to air and he’d told me that it really helped him to get through those difficult teenage years just being able to see people like himself on television sharing their views of the world and being entertaining. I’m sure Jarrod wasn’t the only disabled teenager whose sense of isolation was lessened by watching No Limits on the telly, but for too long it was the only show featuring disabled people and discussing disability on our screens. We tried to get mainstream broadcasters to pick up the show but their indifference to what we were doing was vast. I found it incredibly frustrating that no one outside of community broadcasting could see the value of what we were doing at the time. In 2010, the Australian Broadcasting Corporation received funding from the Department of Human Services to set up a disability portal, which was named Ramp Up. Stella Young was appointed editor and imbued the site with her trademark wit, intellect and keen eye for disability politics. For three years, the ABC had an explicit presence for disability discussion and we all hoped it would lead to bigger things for the disability community at the broadcaster. From my regular conversations with Stella at the time, I know that she found the role of editor incredibly rewarding but over time it also became rather taxing and often frustrating. She was also pursuing a career in stand-up comedy. In 2013, Stella and I spent a great deal of time co-writing (with Madeleine Dyer and Daniel Mulvihill) a disability-themed comedy pilot called Casa Del Crip. We shot the show on a shoestring budget in November that year, which was an enormously enjoyable though difficult process. Working with Stella was a lot of fun but it was evident that she was stretched for time due to her role at the ABC and increasing requests for hosting and performing.

Disabled people being seen on our screens  61 In April 2014, Stella won the prestigious Best Newcomer Award at the Melbourne International Comedy Festival with her stand-up show Tales from the Crip. She already had an inkling that the funding for Ramp Up was not going to be renewed and that she would be out of a job by the middle of the year. By this time she was well and truly ready to take on the world with her comedy and writing, and she told me that the end of Ramp Up would be terrible for the disability community but great for her personally as she’d be able to pursue the tsunami of other offers that were threatening to overwhelm her. Stella had become the face and voice of disability in Australia and her international profile gained a great boost when she travelled to the USA in the middle of 2014. We all knew there was a risk associated with having all dialogue around disability in Australia seen and heard through the one voice. Stella herself was as keen as any of us to diversify the number of people who could talk about disability. On 6 December 2014, Stella died suddenly. In the midst of our collective grief a great hole opened up in the discourse around disability and politics in this country. As a community we have struggled to adequately fill that hole ever since. In the years since Stella died, there have been efforts made to include disability in the national discourse, with limited success. Activists have had to repeatedly remind those promoting ‘diversity’ not to exclude disability from the agenda. Other voices from the disability community have risen to prominence but none so far with the charisma, wit, versatility and intellect of our much missed friend Stella Young. My own history with No Limits is a complex one. In 2005, having produced 70 episodes, I resigned in order to pursue other projects and to allow for renewal of the show. Between 2006 and 2011 a number of producers collectively made almost 100 episodes. In 2011, No Limits and the organization I helped establish to produce it, Disability Media (which had been renamed Grit Media in my absence), were in danger of extinction. The renaming of the organization is worth consideration. I had always favoured a plain-speaking name that clearly communicated who we were and what we did but people have always looked for euphemisms to disguise the word ‘disability’. The euphemisms have been many and varied. Some of the funnier and more absurd phrases are ‘differently abled’, ‘handy capable’ and the perennial ‘disAbled’ with its emphasis on ‘Abled’. Once I had left the organization, Stella Young was among a group who wanted an edgier name and Grit Media came into being. In recent years a movement has grown, led by American activist Lawrence Carter-Long, called ‘Say the Word – Disabled’, aimed at eliminating any sense of shame that accompanies the words ‘disabled’ and ‘disability’. I was asked to return and help save the show. When I returned to Grit Media in 2011, I was frustrated by the lack of clarity in the community about who we were and what we did, and soon our board voted to reinstate the original name, Disability Media. I found it much easier to raise funds under this name and it aligned with my own belief that to use the word ‘disability’ proudly is to give it power and eliminate any shame that goes with it. In 2011, the climate for funding a show like No Limits had changed significantly, not so much around disability but for production funding in general. There were

62  Sarah Barton many more players in documentary who were now approaching philanthropic trusts for money. In 2003, when I began seeking money for No Limits under the auspices of Action for Community Living, a well-respected, grassroots disability organization, virtually no one else was using philanthropic money to make television. Eight years later the Documentary Australia Foundation had been set up and the cat was well and truly out of the bag. Access to philanthropic funding had become much more competitive. Philanthropists also want new and sustainable programmes to fund and No Limits was neither of those things. On top of this, the Victorian state Labor government that supported us with money in the early days of the show had been replaced by a Liberal government, which slashed funds for the Office for Disability and could not be coerced into supporting our work. In spite of these difficulties I was able to pull together enough money over the next three years to make three more 13-episode seasons of No Limits. By this time disabled people were much more actively involved in its production. I acted as executive producer, raising money and supporting the teams, while disabled producers like Naomi Chainey and Kath Duncan pulled together crews of people with all kinds of impairments to work behind and in front of the cameras. The show was an important source of part-time employment for the community and I was committed to reinstating modest payments for hosts and key producers on the show. By the end of 2015 No Limits and Disability Media had run its course. We had not been able to secure enough money to keep the organization afloat and so we voted to wind it up. No Limits remains visible online and many of the former producers and presenters have been able to work in other media outlets. No Limits was instrumental in providing training and experience for people such as Carly Findlay, Jax Jacki Brown, Kath Duncan (who had already worked as a broadcaster at the ABC) and Naomi Chainey, who all now regularly contribute to the national discourse on disability matters. In 2008, during my time away from Disability Media, I began developing a major film work about the history of disability. The film Defiant Lives took many years to finance and progressed in fits and starts as money would trickle in. In 2010, I received a Churchill Fellowship that allowed me to travel to Britain and the United States to research the documentary, which by this time was focused on the history of the disability rights movement. On that eight-week journey I interviewed 27 disability rights activists across Britain and the United States. When I returned I continued interviewing Australian activists from the early days of disability rights. Finally in 2015 I teamed up with Liz Burke, a producer I had known for many years, and we were successful in applying to Screen Australia for funds to complete the film. Rob Murphy was my long-suffering editor on the film. Rob and I have worked together on many productions, including No Limits, since the early 1990s and, while personally we couldn’t be more different, our professional partnership has been a productive and creative joy. Once our completion funding was in place we were able to tackle the hardest part of the film, which was pulling

Disabled people being seen on our screens  63 together the archival material – video, film and still photographs. This was a huge task and the finished film has 600 pieces of archival material in it. Structurally, Defiant Lives was a difficult film to bring together into a single coherent narrative. There were 14 rough cuts before we landed on the final structure. Defiant Lives tells a history of the disability rights movement. The film begins in the 1960s and spans almost 50 years. There are complex socio-political concepts to explain in a medium that demands constant injections of colour and movement. Finding the balance between footage of people in wheelchairs being arrested and tossed into police divisional vans, and explaining the various statutory protections for disabled people across three nations required a careful eye for detail and a willingness to break up the serious and dry with more entertaining and engaging visual moments. Defiant Lives provides a useful and accessible beginners’ history of the disability rights movement. It is not a definitive history as this would be impossible within the confines of an 85-minute feature film. Its aim is to open hearts, eyes and minds to the existence and key elements of the disability rights movement, a movement that is barely acknowledged outside disability activist circles. There are many elements of the history of the movement that are missing. There is no reference to important activism around inclusive education. For the most part, this was done by parents of disabled children and educators and I wanted Defiant Lives to be a film about disabled activists, not so much about their allies and supporters who get plenty of airtime in other stories about disability. Some audiences have questioned the absence of specific reference to the self-advocacy movement among people with intellectual disability. I was keen to feature in the film people with communication impairments, a group who are often wrongly assumed to have an intellectual disability. I worry about the term ‘intellectual disability’ and I think in time its connection with difficulties in communicating will be better understood and there will be a reframing of the concept of intellectual disability. I do believe that the concepts in the film around the social model of disability apply to all disabled people regardless of impairment. I was careful during the making of the film to avoid gratuitous shots of wheelchairs and other visual evidence of personal impairment in the interviews I conducted. Interviewees do not discuss their impairments and so audiences should not assume that some types of disability have not been covered – that would be to miss the point of the film. Defiant Lives is a celebration of the achievements of pioneering disabled activists who literally changed the world we live in. Many of them have been arrested for protesting on the streets. Others have fought tirelessly in systemic advocacy to change laws and to advocate for greater inclusion and access for disabled people around the world. The film ends on an optimistic note. There remains much to be done but the early work of the original activists is recognized and celebrated in Defiant Lives. We completed the film in October 2016, just weeks before Donald Trump’s shock election as president of the United States. By the time of the film’s premiere in June 2017, Medicaid and Obama’s Affordable Care Act in the USA were under

64  Sarah Barton threat and disabled activists were once again blockading buildings in Washington in a now desperate attempt to halt the changes. After an enormous effort, the activists in Washington had a win. When Republicans proposed capping Medicaid and allowing states to eliminate protections this summer, those proposals were met with massive protesting from many Americans who do not want Congress to strip the rights of disabled people, seniors, medically fragile children, and poor people. (ADAPT 2017) Similarly, in the United Kingdom, the austerity measures of Theresa May’s conservative government have overwhelmingly targeted the poor and vulnerable. In August 2017, ITV in the UK reported that: Theresia Degener, who leads the UN’s Committee on the Rights of Persons with Disabilities (CRPD), accused British politicians of failing vulnerable members of society. … Officials have faced two days of grilling from the UN panel in Geneva, which has criticised the UK’s approach. Major groups including Disability Rights UK and the Equality and Human Rights Commission also warned that disabled people’s rights under the convention are at risk of being breached. (ITV 2017) This backwards trend in eroding the rights of disabled people is alluded to in Defiant Lives by performer and activist Liz Carr, who states The risks to more and more of us ending up in residential care, in the UK, is increasing. It’s probably never been higher. It’s probably … the last time it was this high was when Paul Hunt and all those great people were doing what they were doing to get out of care. Well it’s now starting again and we’re saying this is a human rights issue. You cannot take away people’s freedom. We won’t be able to work, we won’t be able to be partners, parents. All the things that we are, all the people that we are and can be. But, of course, what local authorities are saying and the government are saying is ‘but you’re costing a lot and, actually, we could take that money and use it to support a number of people, not just one person’. It’s really clever and insidious that even the language of rights and equality is now being used against us. And I think that that is bringing new people into the fight. The struggle for disability rights has only intensified around the world as conservative governments target the most vulnerable in our society for budget savings. Even in Australia, where the rollout of the National Disability Insurance Scheme promises a level of support many disabled people have not experienced before, government erodes and attempts to rein in the choice and control disabled people

Disabled people being seen on our screens  65 had hoped to have over their hard-won supports under the new scheme. A lack of knowledge and understanding about the struggles of the disability rights movement among newly recruited disability support workers is widespread. I hope that exposure to the ideas in Defiant Lives will go some way to increasing awareness of the theoretical underpinnings of the disability rights struggle and a respect for those elders of the movement whose work must be remembered. My own work continues to focus on representing disability on screen in an authentic, complex and nuanced way. The stories are hard to sell to those with the money but it’s vital that we keep trying because when we see disability on screen we can begin to comprehend how it affects people in real life. Then we can create a society that values all people in all our rich diversity because not only do disabled people live among us, but they also entertain and inform us.

References ADAPT, 2017. ADAPT demands senators Graham, Cassidy, Heller and Johnson withdraw their bill because of it’s [sic] devastating attacks on the life and liberty of disabled Americans, press release, 26 September. Available from: http://adapt.org/20170926-pressrelease-adapt-demands-senators-graham-cassidy-heller-and-johnson-withdraw-theirbill-because-of-its-devastating-attacks-on-the-life-and-liberty-of-disabled-americans/ Armstrong, G., 2017. Gillian Armstrong – nothing changes without a fight. ScreenHub. 22 September. Available from: http://www.screenhub.com.au/news-article/features/ policy/screenhub/gillian-armstrong-nothing-changes-without-a-fight-254471 Australian Human Rights Commission, no date. Issues paper: employment discrimination against Australians with disability. Sydney: AHRC. Available from: https://www. humanrights.gov.au/publications/issues-paper-employment-discrimination-againstaustralians-disability/5-what-do-we-know#fn11 Eames, R., 2017. Hell on wheels. Honi Soit. 10 October. Available from: http://honisoit. com/2017/10/hell-on-wheels/ Hemley, M., 2015. Drama quotas revealed as part of major Channel 4 diversity plan. The Stage. 12 January. Available from: https://www.thestage.co.uk/news/2015/drama-quotasrevealed-part-major-channel-4-diversity-plan/ ITV, 2017. UK cuts ‘have created a human catastrophe for disabled people’. ITV, 24 August. Available from: http://www.itv.com/news/2017-08-24/uk-cuts-have-created-ahuman-catastrophe-for-disabled-people/ Knox, D., 2017. Industry backs new charter to promote diversity. TV Tonight, 1 August. Available from: http://tvtonight.com.au/2017/08/industry-backs-new-charter-topromote-diversity.html SBS, no date. About us. SBS. Available from: http://www.sbs.com.au/aboutus/corporate Wikipedia, 2018. Disability art. Available from: https://en.wikipedia.org/wiki/Disability_art

5

Advocacy from within Moira Rayner

Introduction I am an Australian lawyer and have, throughout my working life, had an ongoing commitment to advocating for the human rights of people who find themselves marginalized or disadvantaged in society. During my professional career, I have worked outside the government system as a practising lawyer. I have also held statutory positions which involved working closely with both government and community. My work has involved collaborating with people with disabilities and their organizations to have their rights respected. It has also included other groups: women, children, older people, Indigenous people and people who have come from other countries to live in Australia. My commitment to human rights has been strengthened and sustained by the experiences of these people who have found themselves subject to prejudice and disrespectful or undignified treatment by others and who have been deemed to be lacking ‘capacity’ to express their own wishes or to make their own decisions about their bodies and life circumstances. The consequences of these experiences are often limited participation by these people or groups in the life of their society; a failure by society to acknowledge the legitimacy and significance of their experiences; and the significant and often negative control related to state-provided or employment resources on which they depend. This chapter is a personal reflection of the possibilities and the challenges of working as an advocate for human rights both inside the governmental system and outside it. It focuses on work done primarily in the 1980s and 1990s; however, many of the issues remain relevant today. I have written this chapter because I am concerned that rarely do we hear from those who work within the system about what it is like to be an ally and advocate with those who are seeking to gain or sustain acknowledgement and respect for their rights. The chapter includes but is not limited to advocacy and interventions meant to empower people with a disability/ disabled people, because working within a statutory human rights framework necessarily includes other groups. The chapter begins with a brief account of the challenges and positive aspects of working outside the government system as a rights advocate. It then provides an account of the work of the Commissioner for Equal Opportunity, which was

Advocacy from within  67 my position in the early 1990s. These are case studies and each one describes the advantages and challenges of working outside and inside the system.

Non-governmental human rights advocacy Once qualified as a lawyer, I established and managed my own legal practice as senior partner in Perth, Western Australia, where I gained a reputation for legal and civil liberties advocacy. I had a particular professional interest in access to justice, especially for individuals who were disadvantaged by their sex, disability, Aboriginality and age. It was particularly important that these people had access to advocacy which would enable them to be heard formally and to obtain available redress if they had been treated unfairly or disrespectfully or made to feel worthless or undignified. During this time, I worked to earn a living, but I also worked with individuals who needed representation to advance their cause in the legal system and had few resources. Usually this meant that my work was pro bono (without fee). Balancing the need to earn my own living and keep the legal practice going and the commitment to working with individuals who could not pay legal fees was a challenge to working in this way and restricted the time that I could give to pro bono work. Because anti-discrimination law was introduced relatively late in Western Australia, I did not have very much experience at this time in legally representing people on discrimination issues. One person I represented in 1986 remains vivid in my memory, a Chinese Australian man who said he had had a ‘nervous breakdown’ because of the racism he experienced at his work in Perth and thus he had made a race discrimination complaint to the Western Australian Commissioner for Equal Opportunity. Though the Commissioner had the discretionary power to appoint her legal officer to represent him at the Equal Opportunity Tribunal when conciliation was not attempted, she declined to do so. I acted for him pro bono because a man with mental health issues, who had limited English language and was confronting the stress of legal proceedings, could not handle litigation on his own. He won the case and, uniquely, was even awarded his legal costs. His case pointed to the often multiple disadvantages people may experience in seeking to win respect for their rights; ethnicity, disability, gender and age are not separate identity issues but interact and can mean that some people are multiply disadvantaged when they seek their rights. I became aware in my practice that while I could work with individuals and advocate for their rights, this was unlikely to lead to systemic change. Because of this, I sought to work for social change by working on rights outside my practice and was the Chairman of the WA Law Reform Commission, where I was by then practising as a barrister; I was involved in individual advocacy, in law reform (through the WA Law Reform Commission and with the support of the Law Society) as well as community advocacy. I became more keenly interested in the possibility of being able to focus on systemic change in relation to my work. Consequently, when I was invited to apply for a statutory human rights advocacy role, I took it seriously.

68  Moira Rayner

Human rights advocacy within the system I became the Commissioner for Equal Opportunity in the Australian state of Victoria on 21 May 1991. I took the position intrigued at the possibility of changing the dynamics of persistent discrimination through an independent government-funded, presumptively government-supported statutory office, having the authority to offer a remedy that was much more accessible than an individual approaching a court and running a ‘case’ over discrimination. That remedy was a form of alternative dispute resolution, which cost nothing for the affected parties. The standing of the Victorian Equal Opportunity Act and respect for its operation was under a lot of negative pressure when I took up office. The Commissioner was responsible for administering an Act, including acting as a gatekeeper against all or any litigation as a first remedy. The thinking behind all equal opportunity regimes of the 1970s and 1980s in Australia had been that civil litigation was so adversarial and a lay person’s access to any court so difficult that it was undesirable. Conciliation (distinct from mediation) by an authoritative figure was considered a far better remedy for everybody. That was also why the Act provided that complaint handling must be completely confidential. Conciliation was to be frank and educative for the parties concerned; only anonymized reports on outcomes could be published through the Commissioner’s annual report, tabled as a parliamentary paper. Most importantly, the Commissioner had to be an authoritative source of information about the issues and the laws, somebody whose opinion mattered because it was based on a thorough knowledge of the law and the experiences of minority groups and individuals. Working within the scope of the Equal Opportunity Act (1984) I worked as Commissioner for Equal Opportunity within the Equal Opportunity Act in force in 1990 in Victoria. The original Equal Opportunity Act, enacted in 1977, had covered only discrimination on the basis of sex and marital status. Laws only apply to those identified within them, so as different characteristics of other groups were added over time, the advocacy duties multiplied. By 1984, ‘impairment’ (another way of describing a disability) had been included as a protected characteristic in the Victorian Act. In addition, by 1990 the role of the Commissioner had developed and changed. The 1977 Act created an Equal Opportunity Board to oversee its operation; the Board originally employed the statutory Commissioner who serviced and reported to the Board, supported the Board’s educational activities, fielded inquiries and complaints to it, and tried to resolve them through conciliation as a primary remedy. The Board conducted educational campaigns for the public as well as sitting as a tribunal to hear and determine unresolved complaints. The Commissioner was an independent statutory officer rather than a public servant, appointed by the Governor in Council for a fixed term, and under the new arrangements in force in 1990 came to the fore as being responsible for administering the Victorian Act. The amendments separated the Commissioner from the Board and added to the

Advocacy from within  69 characteristics to be protected to the original sex and marital status but also parental status, religious or political convictions or activities, race and impairment. The Act’s purpose was to make some discrimination in public life ‘unlawful’ (not criminal) and to review discriminatory legislation; the Commissioner was to liaise with the Equal Opportunity Board and to prosecute unlawfully discriminatory advertisements. The Commissioner was required to educate the public, receive inquiries and investigate complaints. Further, the Commissioner could be required by the Equal Opportunity Board to conduct an inquiry into a discrimination issue and report to it for a public hearing if attempts to resolve findings of discrimination failed. The Commissioner could also deal with complaints of sex and race discrimination under federal equal opportunity legislation because of a cooperative arrangement with the federal Human Rights and Equal Opportunity Commission. This became a particularly significant option two years later. The Victorian legislation required complainants and respondents to cooperate with the Commissioner’s investigations and to participate in alternative dispute resolution. Only if conciliation failed could a party ask for the Board to make a quasi-judicial determination of a complaint or of a decision of the Commissioner about whether to entertain the complaint at all. Before taking up the position, I was inspired by an achievement by the first Commissioner in the case of Wardley v Ansett. In February 1976, Deborah Wardley lodged an application with Ansett Airlines to become a commercial pilot. Its charismatic owner, Reg Ansett, rejected her application because she was a woman. The Victorian Equal Opportunity Act 1977 was then in its infancy. Ms Wardley made a complaint of sex discrimination in employment to the Victorian Equal Opportunity Board. The Commissioner for Equal Opportunity attempted conciliation, unsuccessfully. Ms Wardley pursued her claim in the Equal Opportunity Board, the Supreme Court of Victoria and the High Court of Australia. The case was the first Victorian Equal Opportunity Act matter to be heard by the judicial system. Ansett finally offered her employment some three and a half years later, after the company had been found guilty of discriminating against her on the basis of her sex and was ordered to accept her as a trainee. A further four years passed before Ms Wardley’s trainee position was secured. Her case made headlines around the world. It changed the way the law seemed to work for victims of age-old discrimination. I thought that equal opportunity legislation might protect and promote at least some human rights and liberties. Indeed, in spite of limits to them I found that equal opportunity laws did make a contribution, to the rights of people with disabilities in particular. For example, without the ‘new’ tradition of equal opportunity legislation in Australia and government support for it, there would not have been a successful wave of demand for a (federal) Disability Discrimination Act (1992) that covered every jurisdiction throughout Australia, and successful litigation that required government and industry to plan for disabled access to public buildings and events, and accommodate the needs of disabled adults and children so that they had or would be accountable if they did not plan for and provide accessible accommodation, access to public places, goods and services, education, sports and clubs.

70  Moira Rayner Investigating and conciliating complaints The Wardley case highlighted the remarkable effect of an Act which identified discrimination in employment because of a potential employee’s personal characteristics as anti-social and worthy of a remedy through persuasion, at first instance. The Victorian Equal Opportunity Act empowered an individual to pursue a remedy for direct, even unapologetic, discrimination by making a complaint, and having an authoritative statutory basis for doing so. Deborah Wardley’s complaint was taken to one of the most powerful corporate leaders in Australia at that time, by Fay Marles, the first Victorian Commissioner for Equal Opportunity, in a spirit of firm but friendly compromise. In face of Ansett’s refusal, Wardley could bring evidence to support her claim in an informal tribunal, the Equal Opportunity Board, in which she would not risk any order for legal costs against herself if she should fail. The traditional justice system was then open to her continuing to demand recognition for her right to the equal opportunity to become a commercial pilot. Through her perseverance and ultimate success it changed the way equal opportunity law was perceived throughout Australia and the world. The Commissioner’s power to receive, investigate and require parties to complaints of discrimination to attend and cooperate in attempting conciliation of them was a very important one. In my time as Commissioner, the rate and consistency of complaints of disability/impairment discrimination was consistently the highest in the hierarchy of inquiries and complaints, and was growing. The majority of complaints were conciliated to an outcome that resolved at least some of the issues. This is often overlooked, perhaps in part because traditional courts and other tribunals also require those who have approached them for resolution of a dispute to go through some form of alternative dispute resolution. Publishing anonymized reports of how some significant complaints were resolved in confidential conciliation was the norm in my time as the Commissioner: my annual report; regular public newsletters; public commentary; and guidelines to employers and employees, schools and students, and providers of goods, services and accommodation were meant to gain public attention to what could be done about overlooked problems. We hoped we were developing trust that the process the Act envisaged was safe and effective, on all sides. Connection with advocacy groups and advocates An important early initiative was to find out who was not enjoying the human rights the Act proposed to protect and who should be using it. We began by trying to find out what the complaints and inquiries that the Office was receiving in ever-increasing numbers showed about systemic discrimination problems in Victoria. Due to inadequate technology, we did not have accurate information but we could tell that community advocacy groups that should have been approaching us for help were not. There were, for instance, pitifully few relationships with Aboriginal people who were simply not engaging with the Office. The complaints we had were, overwhelmingly, from people who were

Advocacy from within  71 in employment or already at least somewhat engaged in public activities, which the Act covered. Noticeably absent were people with disabilities who faced barriers to participating in public life. I saw it as an important part of my work to do something about this situation. Though persistently among the highest numbers of complaints and inquiries brought to the Commissioner, disability discrimination complaints were mostly made by people who were working. There were only a few complaints by parents of school children with disabilities about ‘mainstream’ schools failing to support their children. There were obviously issues that were spoken of but not brought to us through the complaints system about systemic or indirectly discriminatory planning and decisions that meant that disabled adults and children could not access public buildings or public transport, benefit from education, get or retain work, or even use public spaces because their needs had not been given priority. How were we to reach such people? We needed to build relationships with community advocacy groups and family members who were likely to raise these issues and advocate for them. The importance of doing this was highlighted by the issue of people with disabilities working in sheltered workshops. Advocacy groups and union interests had identified the apparent anomaly of people with disabilities who were working in ‘sheltered workshops’, and who did not speak up about their conditions or remuneration, not having the same kinds of protection to the rights of other employees. In 1990, the Victorian government accepted the obvious: that sheltered workshop ‘work’ was employment and should be governed by employment laws like any other work. I was approached by parents who were concerned that if sheltered workshops were regulated in similar ways as employment, their ‘workshops’ might shut down and their (adult) children would not have activities during the day. I had to explain the importance of seeing their adult offspring respected as employees with rights to safe working conditions and negotiated remuneration. They were reluctantly convinced. Another important issue for me personally was the importance of working with, rather than speaking for, people whose voices were not heard by others. This was particularly the case for people with intellectual disabilities, many of whom were still living in large institutions. I did not have to be convinced that the dignity of the person and their capacity to communicate their wishes and make choices is a fundamental right, and involving them in decisions that may affect them profoundly is imperative. In addition to working actively to create links with community advocacy groups, including disabled people’s organizations (not a term used then), I learned an immense amount by appointing to our office a woman with physical and communication impairments. She approached me, offering to work voluntarily. This was not acceptable, so I negotiated a fixed-term contract with her to work in our building, attend our staff meetings and to report on the operation of our Act from inside knowledge about disability issues, which was obviously data we did not have. The really important effect of her working as a staff member and her internal

72  Moira Rayner review of state-provided services to people with disabilities (which were in fact minimal as so many were delivered through the charity and NGO sector) made an important contribution to our knowledge. In addition, we learned from her experience with us some of the systemic difficulties and negative attitudes from others she experienced daily. For example, one of the more disconcerting experiences arose one working day when the office participated in our one and only fire drill. Firefighters directed us to vacate the building by the stairs (we occupied the fourth and fifth floors). Firefighters instructed me to leave the woman in the wheelchair, without speech, on the fourth-floor landing, to await later ‘rescue’. In the context of a fire drill, it highlighted the insensitivity of the instruction, which was given in the presence of, but not to, or even seeking consent or understanding of, our disabled employee. In an actual context of fire, it could have had life or death consequences. It was significant that the firefighters never returned to carry her and her wheelchair down the stairs. The Commissioner stayed on the landing as well and the group of staff and firefighters had a lesson in anti-discrimination! This experience also highlighted the critical importance for us to be working directly with disability and community groups to focus on and be a way of amplifying their rights to be a part of the community – among the important issues were, of course, the consequences of the then early process of ‘deinstitutionalizing’ residential institutions and sheltered workshops (and selling the valuable land they were built on), which had long serviced the perceived interests of people with disabilities. Some complaints and strategies we used in collaborating with advocacy groups worked in changing awareness and attitudes and some did not. The effectiveness of disability advocacy, in particular, depended very much on combining the powers of the Office with the respect and support of the existing advocates and influencers in the society in which it was operating. To be effective, our work meant giving voice to the experience of those affected by their disadvantage; the advocacy had to be more than scolding or a statement of virtue because it had to influence not only behaviours but also attitudes. Defending the Act As Commissioner, I started being represented in court when individuals, organizations or corporations and government agencies challenged my powers and the scope of the Act within the Supreme Court. Some of these were about my power to entertain complaints and decide which should be investigated and conciliation attempted. Others were about challenges to the confidentiality of information I had about discrimination issues, arising from our outreach work or inquiries brought to me and, in one particular case, where a complaint was resolved in conciliation. Others were even more important: some judges were willing to impose very heavy burdens of proving complaints on the individuals who brought them. With the closure of large institutions in Victoria, more people with disabilities were leading independent or semi-independent lives in the community. This meant that

Advocacy from within  73 issues like accessibility to buildings and public transport became an increasing priority for people with disabilities. In 1991, the High Court made a most significant decision on the interpretation of the Victorian Equal Opportunity Act. Arising from a disability discrimination complaint initially lodged to my predecessor in 1989, nine individuals and 29 community organizations representing the rights of disabled people challenged the decision by the Public Transport Corporation (PTC), responsible for the provision of public transport in Victoria, to change the way people could buy tickets on trams. The complaints and the allegations of discrimination arose out of a direction by the Minister for Transport to introduce changes to the public transport system, including a new ticketing system for public transport and the removal of conductors from some trams. The new tickets, known as ‘scratch tickets’, had to be purchased from retail shops and to be validated by the traveller by making a scratch mark in designated places to indicate the journey being undertaken. Each of the nine complainants had a disability, making it exceedingly difficult, if not impossible, to use scratch tickets. Some of the complainants could not travel on trams which did not have conductors. They said the introduction of scratch tickets and the removal of conductors constituted indirect discrimination against the complainants in particular and against impaired persons generally. The complaints and allegations of discrimination were upheld and the Board made orders requiring the PTC to ‘discontinue the scratch-ticket system as the main ticket system for the [c]omplainants’ and to ‘refrain from implementing the driver-only tram proposal’. The PTC appealed to the Supreme Court, which was upheld by the judge. The High Court heard the appeal on that determination in late 1991. The High Court’s decision in what became known as the Met case (Waters v Public Transport Corporation) definitively laid down that, since the Equal Opportunity Act’s purpose was the protection of human rights, a narrow approach to its interpretation was quite inappropriate and would frustrate that purpose. Enabling legislation should be broadly interpreted and the exceptions and exemptions narrowly. One of those defences that had been particularly worrying was the PTC’s argument that it was ‘necessary to comply’ with a direction given to it to make these changes, by its minister, under its Act. As Commissioner in 1991, I had pointed out to the Victorian Premier that, if this were so, any government could avoid equal opportunity laws simply by fiat of the minister. Fortunately, the High Court’s decision went further in directing Victorian courts (and later, by analogy, courts in other Australian jurisdictions) that human rights laws were to be interpreted broadly in their empowering provisions, and narrowly in exemptions, exceptions and defences. This had an effect on the ways in which respondents to complaints had felt encouraged to challenge decisions of the Equal Opportunity Board. Human rights claims could and should be taken seriously because these laws raised important policy decisions by government about avoiding and remedying discrimination. But this was not a national approach, and the ‘win’ in the High Court fuelled calls for the Commonwealth government to introduce national disability discrimination laws.

74  Moira Rayner Representation Neither the Board, as a tribunal, nor the Commissioner had participated in any of the Met litigation. Nor did the Commissioner have the power to represent a party to a complaint before the Board, or in any court; however, I took the view that the Commissioner did have a responsibility to ensure the Act and the Commissioner’s statutory jurisdiction and powers under the Act should maintain its integrity and purpose. As Commissioner I had no explicit right even to seek to be heard in an Equal Opportunity Board hearing. I could, perhaps, if it involved the exercise of my powers under the Act because I administered it, but the Board had no obligation to allow this. In my four years in office I did so just twice: once, to do what I could to ensure that the Board allowed a Roman Catholic priest to represent the religious discrimination complaints of several aged and infirm adults, who, though Roman Catholic, complained that they were being forced to attend Protestant religious services in their residential care home against their will, by its owner. The Board agreed and the complainants’ representative succeeded in obtaining an order that this practice cease. I did it again in 1993 when I approached the Board asking it to order that the government not decommission all women’s jails and put the female inmates in a men-only jail to save money. I had found in a 1992 confidential report, which I referred to the Board after having failed to resolve these findings with the prison authorities, that putting women into a men’s jail discriminated against women. The Board declined my application because it considered that it did not have the power to make it heard having not launched a public inquiry into my findings. The enormous publicity provoked such massive public support for the rights of women prisoners that the government did not proceed with its plans. There were other problems with those complainants who had to take their unresolved complaints to a public hearing before the Equal Opportunity Board. Though this was a cost-free and informal tribunal, it was daunting for an individual to try to present their own case in a more or less formal setting where the other side might be legally represented. It was even more daunting if a favourable Board hearing resulted in an appeal by the respondent where the unrepresented complainant faced costs and unfamiliar court processes and unsympathetic attitudes by some judges. The legal profession’s increasing representation of corporate respondents and even government institutions, such as schools and departments, in what was meant to be an informal, conciliatory process had begun to gather momentum. The equal opportunity framework was supposed to operate quickly, authoritatively and through conciliation rather than arbitration or litigation. Legal challenges made it increasingly hard to seek to protect and promote the human rights protected by the Act through dialogue and mutual education. One such case demonstrated these issues clearly (Keeffe v McInnes). A disabled sports car driver who wanted to take part in competitive motor sports complained to me that he had been barred by the sporting administration on ‘safety’ grounds. The ‘risk’, he argued, had been wrongly assumed from his disability, which affected his use of the steering wheel. He argued he was in fact capable, with minor modifications

Advocacy from within  75 of doing so safely. This case was fought to a favourable conclusion in a Board hearing, but the decision was overturned on appeal to the Victorian Supreme Court in 1990 on the basis of an error of law, imposing an extraordinary burden of proof on the person with the disability, and he was obliged to relitigate the matter to the Board, again, on his own. The Board this time decided that he had not met the burden of proving that he could drive safely. By this time the complainant had been driven to extremes. He chained himself to the doors of the Equal Opportunity Board and declared that he had been denied justice. I felt most sympathetic to his position and recommended to a 1993 parliamentary review of the Victorian Equal Opportunity Act that it provide a clarification to counteract the increasingly restrictive interpretation of what should be empowering provisions of the Act and the broadened exceptions, exemptions and defences in favour of respondents. It was certainly counter to the High Court’s orders in the Met case. An individual complainant like the one in this case could not afford legal representation and not risk a further costs order. My recommendation was not adopted. The Commissioner’s independence A primary issue throughout my tenure was the independence of the Commissioner. This was a critical issue because complaints could be made against government departments and agencies which were not welcome. The Commissioner was a statutory office but the staff to whom I delegated some of my duties belonged to the Attorney-General’s Department and Justice Department. Funding for the Equal Opportunity Board, the Commissioner and the Commissioner’s Office was negotiated with Treasury and allocated as a single line item, which meant how the funding was dedicated had to be agreed between the President of the Board and the Commissioner. Eventually, under a conservative government, the Department chose to fund the Board because it was a ‘tribunal’ and to eliminate the Commissioner. There was another source of funding for complaint-handling, quite separate from the state government. A cooperative agreement with the federal Human Rights and Equal Opportunity Commission (established in 1986) and the Victorian government was to provide up to one third of the costs of the Commissioner’s handling of sex, race and (later, in 1993) disability complaints under federal laws as well as the Victorian Act. But this arrangement, too, took a hit when the state government increased the costs notionally allocated to the running of the Office of the Commissioner and chose to direct the bulk of the funding paid into consolidated revenue elsewhere. Cooperative arrangements with the Human Rights and Equal Opportunity Commission The cooperative arrangements with the federal Human Rights and Equal Opportunity Commission helped significantly in other ways. The agreement facilitated cooperation between state and federal government human rights bodies

76  Moira Rayner that occasionally had descended into squabbling in the past. It also meant that my office and I handled the complaints of federal and state discrimination, and facilitated human rights and public education locally and thus presented to the Victorian public a clear perception that in their home state there was a onestop shop where complaints about discrimination and the law could be raised, addressed, resolved (in some cases) or documented and referred to the Human Rights and Equal Opportunity Commission and the relevant commissioner. Further, it added to the perception that there was a national systemic understanding about and a common approach at both levels of government to the importance of human rights protection in public life. It created opportunities for cooperation in not just complaint handling but also conducting public inquiries and hearings and surveys in Victoria, and setting up a close relationship between, or among, the federal and state commissioners and staff. When the Disability Discrimination Act (Commonwealth), first mooted in 1991, was enacted in 1992 and the very first Disability Discrimination Commissioner, Elizabeth Hastings, was appointed, this led to our offering her a Victorian office in which she could work and develop a deep professional understanding of our issues. It also meant that the federal Commission’s willingness to contribute to the Victorian Commissioner’s complaint handling was some impediment to the state government’s ongoing depredation of the Victorian Commissioner’s resources and independence. The federal and state bodies collaborated with one another freely on other publications, surveys and programmes, especially (towards the end of my time in office) in relation to disability discrimination. We jointly discussed and shared decisions under one another’s legislation when they were not necessarily well publicized. Growing familiarity, casual visiting and socializing added to more or less good relationships with the federal Human Rights and Equal Opportunity Commission and with individual commissioners for sex, race, disability and human rights and the Commission’s President, which led to greatly improved understanding of our roles, experiences and common cause, and much greater openness and cooperation in the shared business of advocacy. Since 1993, in my observation, the hopes of the first Disability Discrimination Commissioner in her first annual report (HREOC 1994) for great change in the recognition of the human rights of people with disabilities were justified. In my opinion, the combined activities of these sundry human rights commissioners, working in cooperation and consultation with people with disabilities, increased our effectiveness, increased community support and encouraged the growth of human rights advocacy movements in professional groups. I believe they have changed the public environment greatly. The (albeit short) use of both local and federal equal opportunity laws in our state and locally based offices encouraged those who could to initiate conversations about their human rights, so that they could, as the Disability Discrimination Commissioner said, legitimately expect to live in their own community with freedom, equality and the dignity of choice.

Advocacy from within  77 What we also hoped for was the acceptance of really important mechanisms to improve access to public buildings, events and opportunities. The federal introduction of Disability Action Plans (since 1993) attracted the attention of commercial law firms and lawyers, and helped to found an industry for disability activists who had the experience and the confidence to inform better decision-making at planning levels at the beginning of projects. Without cases under state laws, such as the Victorian Met decision, and federal decisions about the need to consult the person with the disability on what ‘reasonable adjustments’ (in the Act) they had the right to expect, there would be no interest in developing disability standards. Building standards that do not comply with the Disability Discrimination Act standards of accessibility are no longer acceptable. Transport, employment and public building/space access standards have been the direct consequence of state and federal jurisdictions taking a common approach to the human rights of people with disabilities. Finally, it is important to emphasize that the autonomy of any human rights commissioner with my kind of responsibilities was one of the necessary bases for change. It took a while for the public to appreciate that our role was necessary and well informed as well as balanced and principled.

Conclusion What I have described in this short piece is a moment in time when two levels of government worked surprisingly well together and with people with disabilities to advocate for their human rights. Disability discrimination complaints were at the top of every human rights, equal opportunity and anti-discrimination body from the time disability was first included in legislation. There are many more unvoiced issues that must be addressed. Over time, two important considerations have been broadly accepted, through advocacy backed by authority, as well as advice and support to not only parties to complaints but also those committed to reducing or eliminating disability discrimination. The first is that the best person to consult about what is reasonably necessary to accommodate their disability is the person themselves. The second is that to fail to consult, or to consult and then ignore the person’s views, albeit without intention to discriminate, is still culpably discriminatory on the basis of disability. A government human rights advocate cannot be impartial. Our raison d’etre is a moral imperative: that all people are equal in rights to dignity and respect. Anti-discrimination laws are meant to be empowering for those whose rights are protected. Exceptions, exemptions and defences should be narrowly interpreted to promote the empowering purpose of the appointment. Without the state and territories equal opportunity and human rights advocates, without the federal Disability Discrimination Act and without Australia’s signing and ratifying the UN Convention on the Rights of Persons with

78  Moira Rayner Disabilities, there would be few if any government, professional, not-for-profit and corporate strategies, standards, accountabilities and efforts to prevent, accommodate and remedy unintentional or thoughtless discriminatory behaviour and its effects on people with disabilities. There would also be precious little public awareness not only that human rights are universal but also that our governments have long accepted that their breaches are destabilizing and ‘bad for business’.

Appendix The Australian Human Rights Commission has a ‘quick guide to Australian discrimination laws’ available on its website . ‘The following laws operate at a federal level and the Australian Human Rights Commission has statutory responsibilities under them: •• •• •• •• ••

Age Discrimination Act 2004 Australian Human Rights Commission Act 1986 Disability Discrimination Act 1992 Racial Discrimination Act 1975 Sex Discrimination Act 1984.

‘The following laws operate at a state and territory level, with state and territory equal opportunity and anti-discrimination agencies having statutory responsibilities under them: •• •• •• •• •• •• •• ••

Australian Capital Territory – Discrimination Act 1991 New South Wales – Anti-Discrimination Act 1977 Northern Territory – Anti-Discrimination Act 1996 Queensland – Anti-Discrimination Act 1991 South Australia – Equal Opportunity Act 1984 Tasmania – Anti-Discrimination Act 1998 Victoria – Equal Opportunity Act 2010 Western Australia – Equal Opportunity Act 1984.

‘Commonwealth laws and the state/territory laws generally overlap and prohibit the same type of discrimination. As both state/territory laws and Commonwealth laws apply, those living and working in must comply with both. Unfortunately, the laws apply in slightly different ways and there are some gaps in the protection that is offered between different states and territories and at a Commonwealth level’.

Advocacy from within  79

Cases cited Ansett Transport Industries (Operations) Pty Ltd v Wardley [1980] HCA 8; 142 CLR 237 (4 March 1980) Keeffe v McInnes [1991] 2 VR 235 Waters v Public Transport Corporation [1991] HCA 49

Reference Human Rights and Equal Opportunity Commission (HREOC), 1994. Annual report 1993/1994. Canberra: Commonwealth of Australia. Available from: https://www. humanrights.gov.au/sites/default/files/Annual_Report_93-94.pdf [Accessed 23 March 2019].

Part II

Movement organizations and leadership

6

Action makes a difference Creating inclusive spaces through advocacy work in Sāmoa Juliann Anesi

Laying the foundations of advocacy Sāmoa was previously an Aotearoa New Zealand and German colony (Meleisea 1987) and became independent in 1962. Even though equality was a founding and important goal for a newly independent Sāmoa, groups such as the disability community and those living in rural areas of the island are still marginalized. According to Tasi, an administrator of the Ministry of Education in the 1970s, ‘the main point at the time was equality for all and many of the human resources were mainstreamed’ (personal communication, 13 January 2013). Sāmoan independence from New Zealand administration gave the country a lot of leeway to improve economic and internal development plans. Much of the funding for schools came from private and professional organizations because the government did not have the resources. As Faamanatu-Eteuati (2011, p. 72) argues, it can be seen that since the work of a number of NGOs in the 1960s, special needs education has received increased attention from both the general public and the government. Although negative attitudes still exist among many parents and untrained teachers, there are a growing number of individuals who stand apart and who are working to improve conditions for special needs children. The point that Faamanatu-Eteuati makes is that non-governmental organizations (NGOs) were influential in educating disabled students because of the inadequate government programmes and services. Unfortunately, this was not a high priority for the national government given the numerous and pressing needs of a newly independent nation. These exclusions prompted the creation of NGOs in Sāmoa to provide advocacy and services where none were provided by the national government for marginal communities. Disability advocates act to address the exclusion of disabled people from employment, education and social service sectors of society. Disabled people’s challenging reality is reflected in one Australian Government report which states that ‘many people in the disability community are marginalized by society, discriminated against in society which includes public, commercial, government,

84  Juliann Anesi businesses … Sāmoa’s [current] economy and society is not as inclusive of people with disability as is desired by the people themselves’ (DFAT 2013, p. vi). Such concerns led to the establishment of the Sāmoa Disability Program. The main role of the programme is to coordinate and implement the National Policy for Persons with Disability and lead the mainstreaming of disability issues into national plans and legislation. This chapter describes the advocacy work of Sāmoa’s only self-advocacy organization, Nuanua O Le Alofa (NOLA), illustrating the vital role of disability advocacy in driving legislative and policy change across the country. The organization has addressed the gaps in government services and strives to change the normative definitions of inclusion in Sāmoan culture. Nofo, one of the founding members of NOLA, astutely makes the comment that advocacy and self-advocacy is ‘action [that] makes a difference’, adding that action led by disabled people is critical (personal communication, 28 July 2016). As the title of this chapter suggests, there must be action on behalf of, for and by disabled people. NOLA continues to advocate for the improvement of social and educational policies that directly affect the quality of life for disabled people. Moreover, the advocacy and self-advocacy approaches redefine the idea of disability inclusion and service provision, a valuable model to consider in the Pacific Islands context.

Thinking about self-advocacy This chapter highlights the ‘advocacy work’ of NOLA, as coined by its members, and the challenges they continue to face in a changing society. In undertaking this analysis, I borrow from Garner and Sandow’s (1988) scholarship on advocacy and self-advocacy with disabled students and their concerns about decision-making by or on behalf of children with ‘special needs’ or mana’oga fa’apitoa. Specifically, advocacy is the representation of the views, feelings and interests of one person or group of people by another individual or organization. Self-advocacy is the action or utterance of a person on their own behalf without the intervention of another. Moreover, the shift in focus from advocacy to self-advocacy is an extension of the process of empowerment and parallels the experience of other groups in society who have sought to replace the intervention of concerned others with their own direction (Garner and Sandow 1988). Complementing the framings of advocacy and self-advocacy, this chapter highlights advocacy as having both independent and interdependent approaches. Historically, advocacy is defined as an independent movement of consumers (e.g. parents, disabled people and allies) to monitor and change human service agencies (Biklen 1976). The interdependence approach to advocacy straddles the idea of independence and refers not just to a set of skills or being able to care for one’s self, as service professionals tend to define it, but rather refers to having control over making decisions that directly affect one’s life, with support of a trusted network (Oliver 1990, p. 91). Similarly, interdependence relations recognize the significance of interconnected and collective aspects of care similar to the Sāmoan

Action makes a difference  85 notion of tausi, or to care for. Likewise, such emphasis on the dynamics of advocacy, self-advocacy and interdependence contextualizes and retains the focus on the disability community’s actions, which then informs our analysis. Tautua, or service to others, is another Sāmoan concept that reflects the self-advocacy and advocacy work by the members of NOLA. Grounded in ‘Sāmoan Indigenous references’ or ways of knowing, reciprocity and care are understood as being the responsibility of all members of the community (Ta’isi cited in Suaalii-Sauni et al. 2018). In line with cultural practices and advocacy work, NOLA members plan to increase the employment and education rates of disabled people. Self-advocacy organizations practise concepts and skills associated with selfdetermination. Research suggests that people who are self-determined have better post-school outcomes (Wehmeyer and Schwartz 1997). The significance of selfadvocacy is its power to increase human happiness through extending the power of personal representation to all individuals. Self-advocacy is sometimes incompatible with this view, however, because it assumes that decisions can be made by all disabled people. Disability scholars assert the need to also think about interdependence as a framework of collective collaboration rather than independence as merely doing things for oneself (Clare 2017, Fine and Glendinning 2005, Mingus 2010). Interdependence understands the body as both embedded and embodied, dependent on others (Reindal 1999).

Researching ‘advocacy work’ As historian Kim Nielsen (2012, p. xiii) suggests, disability is not the story of someone else. It is our story, the story of someone we love, the story of who we are or may become, and it is undoubtedly the story of our nation. It is, quite simply, the American story in all of its complexities. Along these lines, the history of Pacific Islanders in Oceania is also fraught with stories of colonialism, erasure of Indigenous people’s sovereignty and the excavating of natural resources leading to the displacement of people. Disability, then, becomes an expansive category that must include coloniality, the aftermath of colonialism. Coloniality has become the most general form of domination in the world today, after colonialism as an explicit political order was destroyed. Further, it is the crux of the global capitalist system of power, organized around two axes: coloniality of power and modernity (Quijano 2007). Scholar Aníbal Quijano (2007) suggests ‘coloniality of power’ is based on racial social stratification of the world population under the Eurocentric worldview, which pervaded and modulated the basic instances of capitalist colonial and modern world power. Such power dynamics and history must not be ignored in our advocacy stories, particularly its disabling impacts on the development, recovery and sustainability of Indigenous communities.

86  Juliann Anesi This chapter highlights the stories of three self-advocates and members of NOLA. The interviews were conducted in 2013, 2016 and 2018. The participants generously shared their stories with me at workshops, lunch times and training sessions. I am grateful for their generosity and openness to sharing their stories about struggle, love, leadership and imagination. The participants chose whether their real name or pseudonym is used in the chapter. The interviews were taped and video recorded by the author, then transcribed by the author. Field notes were also shared with the participants. In addition to the interviews, government documents and reports were used to supplement the stories and support the timeline of the events mentioned. Most of the government documents were retrieved from the Nelson Public Library and the National University of Sāmoa’s Library in Apia, and NOLA’s organization website. The interviews, field notes, archival documents (media, newsletters, reports) and organizational memos were used as primary data.

Nuanua O Le Alofa NOLA is an organization that advocates for and promotes the rights and abilities of people with disabilities. According to the organization’s Facebook page, its main objectives are to empower people with disabilities by promoting human rights and strengthening collaboration and partnership with government and other key stakeholders; establishing community-based early detection, intervention and support services; and improving livelihood opportunities and development of life skills. As an NGO under the Sāmoa Umbrella of Non-governmental Organizations, it is mostly donor-driven and often funded by international and private donors as opposed to public or government funds. Advocacy and self-advocacy NOLA was started by the efforts of three disabled members: Lisa, Nofo and Olo.1 According to Nofo and Lisa, they created the organization in 1999 but it was not until 2003 that they officially formalized the organization, when they petitioned the government for office space and registered as an organization (personal communication, 12 January 2013). Nofo explains the four-year gap before they reunited as a group as a time when they were still trying to figure out how to formally structure the organization. At the time, they worked in jobs that did not relate to their disability advocacy work. Their passion for creating an accessible community led them back together. Nofo and Lisa were bothered by the dismissive and discriminatory practices towards disabled people in the community. Nofo advocates for more job opportunities for disabled people and describes the predicament of most disabled people, who are not hired for jobs, leaving them with no means of taking care of their families. On a personal level, Nofo reflects on his negative experiences as a wheelchair user living in an inaccessible community. He’s motivated to address such barriers through a human rights framework. Nofo believes in the popular slogan by disability activists, ‘Nothing about us without

Action makes a difference  87 us’ (Charlton 1998), that resonated with the philosophy and history of the disability rights movement in Africa and the United States. The disability movement is about people with disabilities demanding control of their fate and recognition that they know what is best for themselves and their community. In this sense, very little is written about disability oppression, particularly in Sāmoa, and even less on the resistance to it across the Pacific Islands. Therefore, NOLA strives to include disabled people in all phases of life, such as education, health, employment, community and family life. Disabled people’s representation in the various facets of the community is also a form of resistance to their ongoing exclusion. Similar to the US context, in Sāmoa self-advocacy for disabled people traces its roots to the People First movement (William and Shoultz 1982). In the United States, the self-advocacy movement was modelled after the civil rights movements of the 1950s and 1960s, including African American women, people from advocacy groups and parents of individuals with disabilities (William and Shoultz 1982). Further, the emphasis on normalization and deinstitutionalization in the 1970s and the self-help movements of the 1980s (Wehmeyer et al. 1998) spurred the emergence of the self-advocacy movement for adults with disabilities in the United States. The independent living movement also fostered self-advocacy and provided a springboard for adult self-advocacy activism (Brooke et al. 1995). Likewise, in Sāmoa, advocacy and activism around the disability community emerged from a civil and human rights agenda and a decolonizing politics that other nations in the Pacific were adopting. Human rights advocacy was often exported from New Zealand and Australia to neighbouring Pacific Islands through aid, professional staff and educational policies. Notably, Lisa, Nofo and Olo attended schools in the United States, Aotearoa New Zealand and Australia. The social movements in these locations influenced their pedagogical and epistemological understandings of advocacy, which is relevant to their advocacy work in Sāmoa. Furthermore, disability advocacy in Sāmoa was possible due to waves of earlier independence and decolonizing movements against colonial administrations. The intersecting relations of advocacy, citizenship and social movements add to the complicated dynamics of inclusive politics within the disability advocacy framework. In line with Oliver’s (1990) idea of collaboration and decision-making, NOLA’s advocacy primarily deals with concerns around capacity development. NOLA members prefer an interdependence approach because they value the support of their allies, and this is reflected by able-bodied staff members who work with the organization. As Nofo states, ‘we deal with getting access to facilities, building structures, finding more information about employment, transportation, and lastly, focusing on the barriers that affect disabled people’ (personal communication, 23 January 2013). With such an immense need for accessibility, NOLA members continue to encourage collaborations with non-disabled members as well as conveying to their constituents NOLA’s expertise in matters involving the disability community. NOLA prefers to model and practise what an inclusive collaboration looks like. Nofo strongly believes in creating mutual relationships. His pedagogy also supports the need for teamwork especially when the

88  Juliann Anesi local government’s capacity to provide services is limited. As stated in the Sāmoa Disability Program report, there is a need to create ‘Disability-inclusive policy and implementation across Government, DPO [disabled people’s organizations] and service provider organisations’ (DFAT 2013, p. 20). NOLA has been at the forefront of encouraging changes at the structural level and the capacity development sectors on the island. Yet they understand that their advocacy is not in isolation and that support from non-disabled members of the community will add to their goals. In terms of organization make-up, NOLA’s infrastructure is partially supported by government agencies, which complicates the inter(dependent) relations they deal with on a daily basis. Currently, the organization is under the Ministry of Women, Community and Social Development (MWCSD). This ministry focuses on community development in order to achieve social and economic outcomes for families and communities. Among the ministry’s core roles is providing policy advice on community and social development issues, including village governance and culture, the advancement of women, youth and child development, and disability and social development programmes. MWCSD strives to provide services for marginal communities, particularly disabled people and families living in rural areas. It also works together with NGOs in Sāmoa to provide social services and economic development opportunities. In addition, it collaborates with organizations in neighbouring nations, such as Fiji, Aotearoa New Zealand and Australia. In early 2005, Lisa officially started working with NOLA. Lisa’s advocacy work connects her to other disability groups in the Pacific. For instance, NOLA is a subdivision of the Pacific Disability Forum in Fiji, and Lisa is a representative of Sāmoa at events in the region. In 2007, NOLA partnered with the Australian Government to provide more healthcare services and strategic training in selfadvocacy. Lisa is also a member of the Sāmoa Disability Task Force, an advisory group to the Sāmoan Parliament. She shares her advocacy work as an undertaking that goes beyond her. Lisa said, ‘disability advocacy work is for everyone, disability work and inclusive education is for everyone’ (personal communication, 7 February 2013). Her statement suggests the collective nature of her advocacy as tautua or service to others, and commitment to an inclusive community. In one of our meetings, she also used the term alofa (love) as another reason why she continues to do advocacy work. Lisa shares a story about another disability advocate named Fiasili, a disabled woman, who was a founding member of Loto Taumafai school for students with physical disabilities. Lisa is motivated by Fiasili’s passion to educate all students with disabilities in the 1980s and strongly felt that she had an obligation to give back. Grounding advocacy work Advocating and changing policies are two priorities for NOLA. In terms of education, disabled students did not attend formal schools due to the negative belief that they were ‘uneducable’. It was advocacy by disabled and non-disabled women that prompted the establishment of Aoga Fiamalamalama and Loto Taumafai schools

Action makes a difference  89 in 1979 and 1980 respectively, which focused on the education of students with intellectual and physical disabilities. These schools were NGOs that preceded NOLA’s founding and paved the way for more inclusive service provider organizations. Unfortunately, at the time, disabled students were not the only group excluded from formal schools; students living in rural areas and those who could not afford to pay for tuition were also excluded. It was not until the Compulsory Education Act passed in 1992 that some of these exclusive policies were changed. The Act required the attendance of all persons, including those with disabilities, meaning they were entitled to a compulsory education. Since then, the Ministry of Education has actively set up strategic plans and local activities to meet the needs of all children within the education system (MESC 2006a, 2006b). In addition to changing people’s negative attitudes about disabled people, NGOs also understood their influence in actively changing discriminatory policies. They chose to model inclusive politics that included disabled people. As Nofo argues, There must be mutual understanding and respect in terms of the laws made. Personally, I think it starts with people’s attitudes about disabled people and this comes back over and over to why advocates and advocacy work is important to make the changes. The point is that disabled people are not gonna stop here. (Personal communication, 26 January 2013) Nofo is pointing to the critical work NOLA continues to do by advocating for the creation and/or amendment of policies. For example, the Compulsory Education Act of 1992 laid the foundation for all students to attend school and enforced the inclusion of disabled students in schools, but the practice of such policy was slow to catch up. Another ‘action’ that NOLA supported is the formation of the National Disability Task Force. The task force includes disabled people in leadership positions. As Nofo and Lisa share, their appointment to the task force committee by the prime minister is a win for the disability community because they now have a seat at the decision-making table and are a part of the legislative proceedings. NOLA members were adamant about their inclusion in the legislative process. Even though they often participated in local discussions and offered their input on disability policy briefs, they realized the systemic impact that their presence in leadership positions would have. The committee is an advisory body to the government on topics involving disabled people’s services, wellbeing and meeting the articles of the UN Convention on the Rights of Persons with Disabilities (CRPD) (Nofo, personal communication, 26 January 2013). Sāmoa ratified the convention on 2 December 2016. Further, Lisa relates the importance of the task force committee, which brought together the Government of Sāmoa and civil society representatives to provide advice and guidance on disability inclusion (personal communication, 3 February 2013). The Government of Sāmoa recognizes the challenges facing disabled people, ‘including the 80% [of disabled people] living outside the capital Apia, and is committed to incorporating disability issues into national and sector plans’ to provide social services throughout the

90  Juliann Anesi islands (DFAT  2013, p. 5). The underlying tensions inherent in the exclusion of disabled people directly relates to ableist attitudes that devalue differences and view able-bodiedness as the standard of humanness and acceptance (Siebers 2008). Changing exclusive policies is a start but the long-term goal is to provide adequate resources to support the implementation of such policies. Other important policies were established in 2009, for example, the National Disability Policy of Sāmoa. The national policy shifted the discussion towards recognizing that disabled people are part of the community and that they have rights, too. More importantly, disabled people are a part of social and economic life in Sāmoa. Since disability is regarded as a welfare issue, much of NOLA’s advocacy work has been aimed at shifting this approach to a more inclusive framing of providing services for disabled people at a comprehensive level. NOLA continuously advocates for the inclusion of disabled people in education, health care and employment because usually the welfare approach defines disability as a ‘problem’ inherent in the individual. As most of the NOLA advocates related, such attitudes often lead to the disempowerment and exclusion of disabled people from everyday life. For example, Lisa mentions that before these policies were established, ‘there was little commitment to involve people with disabilities in society and community life’ (personal communication, 6 February 2018). Based on these preferences which were highlighted in the policy, Lisa continues to advocate for the representation of disabled people in the community, particularly the inclusion of disabled women in leadership positions. She hopes more disabled women will receive resources in their villages and work at the government level to change exclusive policies. One of Lisa’s wishes is to have a seat for a disabled woman in the Sāmoan Parliament. She believes that her dream will come true and it’s just a matter of time. Mostly, Lisa thinks that disabled people’s authority and advocacy in the community nowadays is hard to ignore because more people are supporting their causes, events and agendas. In the future, Lisa hopes to pass on her advocacy work to her children. Likewise, Lisa’s goals parallel Nofo’s message that ‘it is the responsibility of everyone to be inclusive’ (personal communication, 6 February 2018). This message about collective inclusion sums up the sentiment of NOLA as an organization. Lisa and Nofo understand the reality that to achieve such goals, it will take a long time since it requires the commitment of community members and government officials. The advocates would rather take their chances on cultivating an inclusive discourse because they know the direct impact that segregated schools and society can have on the disability community. Mostly, they understand the long-term need for their tautua (service), hard work and potential to benefit the next generations. The importance of being counted Another NOLA member is Mataafa Tino, a blind woman making changes as a disability rights advocate. As a female matai, chief, she is also a church leader and Sunday school teacher. Mataafa plays an important and respected role in community development. In 2014, she led the national advocacy work on the Washington Group Short Set, a set of questions designed to identify the population of disabled

Action makes a difference  91 people in the census. As a result of this work, Sāmoa became the first country in the Pacific to collect information on the situation of children and adults with disabilities in a Demographic and Health Survey (2014) and the National Census (2016). Importantly, she coordinated the country’s very first registration of disabled people for the national elections and the training of election staff to ensure that the electoral systems were responsive to the diverse needs of people with disabilities. Mataafa continues to work as a leader with NOLA, the church and village communities. Her advocacy work also supported the establishment of the Wheelchair Users Association of Sāmoa and the Sāmoa Association of the Deaf. In 2016, Mataafa was named the Sāmoa Observer’s Person of the Year and received the Pasifika Award from the Pacific Disability Forum. In a statement by NOLA, the organization recognized ‘Mataafa’s hard work [as] living proof of how Sāmoa began to make the necessary efforts to make rights real for persons with disabilities through ratifying and working towards implementation of the Convention on the Rights of Persons with Disabilities’ (Pacific Community 2016). Funding and collaborations Fundraising, applying for grants and collaborating with other organizations are all proactive strategies that NOLA members continue to do. Finding money to support the operations of the organization is a priority. As Lisa astutely puts it, ‘we share the same advocacy for begging [for grants, aid]’ (personal communication, 7 February 2013). Currently, NOLA is applying for grants and donations to fund an accessible van with a wheelchair ramp (Lisa, personal communication, 10 February 2018). Since accessible public transportation is not an option, NOLA members rely on the organization’s van to transport them to meetings, school and to their homes. In the past NOLA has collaborated with international organizations, such as the National Council of People with Disability and the Rotary Club in London and New Zealand. Locally, NOLA continues to request support from the Ministry of Health, the Ministry of Women, Community and Social Development, and the Australian Government. Likewise, NOLA collaborates with a peer organization, the Blind Society of Sāmoa, by sharing staff training resources and workshops. Most of the funding comes from government and private sources from New Zealand and, since 2003, Australia (Likou 2017). These sources of funding are sporadic and grantbased, which has also led to the precarious status of NOLA as an organization when it has to wait on funding approval from local and international sources. As most members of NOLA shared with me, obtaining funding is the most stressful part of their advocacy as an NGO. Sometimes they do not receive a pay cheque for months until their funding is approved. Advocating for new models of disability Further commitment by both the Sāmoan community and government is needed, especially for creating an inclusive community. The advocates at NOLA understand the prevalent and contentious use of the medical model of disability as the approach to inclusion of disabled students. The medical model of disability defines

92  Juliann Anesi an illness or disability as the result of a physical condition, which is intrinsic to the individual or a part of that individual’s own body. Such a definition tends to place the person’s disability as the ‘problem’ or ‘defect’. The medical model implies that ‘curing’ or at least ‘fixing’ the illness or disability revolves around identifying the illness or disability from an in-depth clinical perspective, prioritizing the decisions of trained healthcare providers, understanding it, and learning to control and/or alter its course. Paradoxically, NOLA members’ critique of the medical model also complicates their ideas of able-bodiedness as some of the members primarily depend on medical services to improve their quality of life and, for some, to stay alive. The ironies of needs, ideology and practice that disability advocates must negotiate are complicated. Other models of disability have sprung up to counter the unilateral prominence of the medical and charity models. For instance, the social approach to disability focuses on systems and structures that perpetuate the exclusion of disabled people, while the charity model fosters the idea of pity and the need for non-disabled people to ‘help’. Along these lines, Nofo prefers the social model approach because disability is not only about the person’s impairment and illness but rather also about the community and society whose barriers disable the person. Mostly, Nofo believes that the challenge is to change our mind about the stereotypical definitions we have of disability. He goes on to explain that we need further clarification with the use of terms because the ‘social model approach of disability shifts the responsibility from the person as the one responsible for barriers in society. Society is the disability and barriers to disabled people’ (Nofo, personal communication, 27 February 2016). Notably, NOLA members seldomly discussed mental disability and the bodymind (Price 2015) relations as part of their disability advocacy work. Although this is a desirable conversation, Sāmoan NGOs are still at an early stage of organizing comprehensive support for mental disability that does not depend on the services generally provided by the national hospital, prison and correctional services. The need for these services are pertinent and their establishment must be a priority. Changing language and attitudes Coupled with policy advocacy, the NGOs, particularly NOLA, advocated for changing the discourse in how people used and understood language about disability and bodies. Ableist discourses often construct and define disability. Ableism defines the non-disabled body as the normative standard of society, while disabled people and their allies work to redefine such a mythical idea. Likewise, Nofo prefers the term ‘disabled people’ rather than ‘people with disability’, which he clarifies is also about ‘impairment’. Then disabled people are referred to as ‘people with impairments’. Nofo’s articulation of language preference is about a (re) claiming of words that fit in his life categories and define him. He is claiming the terms that also describe his life as someone with a physical disability. Mostly, Nofo is defining his desires for society to turn away from such categorizations of disability as pity, stigma and ‘considering disabled people as less than others’ (personal communication, 27 February 2016). The practice of reclaiming terms

Action makes a difference  93 through the use of purposeful language is one strategy to avoid oppressing those with impairments, chronic illnesses and mental health conditions. Similarly, Lisa continues to work on changing words and phrases that describe disabled people. Resembling the ‘R’ word campaign in the United States, people are educated about the exclusionary history and derogatory meaning of the word ‘retarded’ used casually by people. In the Sāmoan context, Lisa teaches people about the translation of words from Sāmoan to English. She teaches the community to ‘not use the word ma’i [sickness] and to use the phrase mana’oga fa’apitoa [special needs] instead’ (personal communication, 7 February 2013). Lisa believes these are more appropriate choices of words that will not hurt anyone’s feelings. Moreover, phrases such as teine nunu po le tama tauaso (loosely translated to English as woman with a speech impediment or a blind man) are inappropriate as they are understood as a ‘negative thing’ (personal communication, 7 February 2013). To Lisa, using positive language is one way to change people’s negative attitudes about disability. She understands that changing attitudes is hard to do overnight, but for her, ‘I look at it as a challenge whether I am in the wheelchair or not, I still have the same rights as you. I have a right to work and be around town’ (personal communication, 7 February 2013). Lisa, like Nofo and Mataafa Tino, continues to advocate and change people’s attitudes while also training their peers about disability policies and implementing public policies. Recently, NOLA’s advocacy work has involved training, implementing and educating local entities about the CRPD. With support from the Pacific Disability Forum, NOLA is also collaborating with organizations in the region. UN Convention on the Rights of Persons with Disabilities In September 2014, Sāmoa added its signature to the United Nations Convention on the Rights of Persons with Disabilities, ratifying the Convention in December 2016. With the country committed to the implementation of the CRPD, NOLA anticipates that the new policies will address the following challenges: emotional, sexual and physical abuse of disabled people; and training and access to resources and employment of disabled people. As Nofo recounts, ‘one of the barriers in society is attitudinal barriers, it is difficult to change people’s negative view of the disabled because society is a disability’ (personal communication, 26 January 2013). Equally, Lisa also works with the other staff members of NOLA to address the attitudinal and structural barriers in society. She often conducts workshops with local villages, while collaborating with church and women’s organizations on early childhood intervention and parenting skills. For Lisa, her advocacy in rural areas is critical because of the limited services provided for the disability community. Lisa mentioned that municipalities further outside the main town or village of Apia are excluded from social service programmes based on their geographical location on the island and unreliable transportation. Changing attitudinal barriers and providing advocacy services is also linked to the work that Mataafa Tino is currently doing. She is one of ten disability leaders from across the Pacific who support the regional implementation of the CRPD through the Pacific Disability Forum. The leaders are trained by the International Disability

94  Juliann Anesi Alliance comprising numerous officials from different sectors of government and/ or islands. The team is charged with the enormous and critical task of providing in-country disability-inclusive training to government ministries, NGOs, the private sector and the wider community.

Conclusion In closing, this is a story about disability advocates changing their community and the world they want to live in. The narrative of disabled people as ‘helpless’ and ‘pitiful’ is no longer viable. Disabled people are setting the course for a more inclusive society and space. NOLA is an organization that continues to teach us about social transformation. They challenge the purported inclusive ethos of the Sāmoan culture and model the desired outcomes for the community. The advocates’ stories also complicate our understandings of Indigenous ideas of inclusion, class, disability, illness, gender and ableism. I contend that such stories of advocacy and activism decentre western notions of ability and intragroup discriminatory attitudes of care. Mostly, they are also pertinent to the fields of disability studies, education and Indigenous studies as they present the empirical reality of the future of (dis)ability, which equally includes topics of mental disability, chronic illness, bodymind, desire and pain. Importantly, the advocacy and activism by NOLA members do not occur in isolation, as other disability rights movements are happening in Africa, Mexico, New Zealand, the United Kingdom and the United States (Ingstad and Whyte 1995). The significance of this story is that disabled people are the leaders and experts of their communities. The self-advocates are at the forefront of changing disability policies and cultural practices at the national, regional and local levels. Again, part of NOLA’s story is about self-determination and thinking about interdependence as a framework of collective collaboration rather than independence as merely doing things for oneself (Oliver 1990, Mingus 2010, Clare 2017). NOLA’s advocacy is about the process of local translations of disability ideologies and a form of care that is interdependent. This chapter also addresses the balancing of communal obligations and customary rituals with global notions of disability, education, development and care. For the Sāmoan case, NOLA and other NGOs’ advocacy work is necessary, appreciated and ongoing.

Note 1 Unfortunately, I did not have the opportunity to interview Olo as she was not on the island at the times I conducted the interviews.

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Action makes a difference  95 Charlton, J., 1998. Nothing about us without us: disability oppression and empowerment. Berkeley, CA: University of California Press. Clare, E., 2017. Brilliant imperfection: grappling with cure. Durham, NC: Duke University Press. Department of Foreign Affairs and Trade (DFAT), 2013. Sāmoa disability program: final design document. Canberra: Australian Government offices. Available from: http://dfat. gov.au/about-us/publications/Documents/Sāmoa-disability-program-design-document. pdf [Accessed 20 March 2018]. Faamanatu-Eteuati, N., 2011. Se’i tatou ‘aleaga: Samoan educators’ insights into inclusive education development. Pacific Asia Education Journal, 23 (2), 65–76. Available from: repository.usp.ac.fj/6879/1/PAE_23__2__final_11.pdf#page=65 [Accessed 27 September 2018]. Fine, M. and Glendinning, C., 2005. Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’. Ageing and Society, 25 (4), 601–621. Garner, P. and Sandow, S., 1988. Advocacy, self-advocacy, and special needs. London: David Fulton Publishers. Ingstad, B. and Whyte, S., 1995. Disability and culture. Berkeley, CA: University of California Press. Likou, I., 2017. Education launches key policy documents. Sāmoan Observer Newspaper, 27 June. Available from: http://www.Sāmoaobserver.ws/en/27_06_2017/local/21589/ Education-launches-key-policy-documents.htm [Accessed 4 March 2018]. Meleisea, M., 1987. The making of modern Sāmoa: traditional authority and colonial administration in the history of Western Sāmoa. Suva: University of South Pacific Press. Mingus, M., 2010. Wherever you are is where I want to be: crip solidarity. Leaving Evidence, 3 May. Available from: http://leavingevidence.wordpress.com/2010/05/03/ where-ever-you-are-is-where-i-want-to-be-crip-solidarity/ [Accessed 1 March 2018]. Ministry of Education, Sports and Culture (MESC), 2006a. Strategic policies and plan: July 2006–June 2015. Government offices of Samoa. Available from: http://www.mesc. gov.ws/images/downloads/STR_PLAN_FIN_060616.pdf [Accessed 4 March 2018]. MESC, 2006b. Sāmoa inclusive education policy. Government offices of Samoa. Available from: https://www.mesc.gov.ws/index.php/en/legislation [Accessed 11 October 2018]. Nielsen, K., 2012. A disability history of the United States: revisioning American history. Boston, MA: Beacon Press. Oliver, M., 1990. The politics of disablement. Basingstoke: Macmillan. Pacific Community, 2016. Social development programme: 70 inspiring Pacific women. Available from: http://www.spc.int/70-inspiring-pacific-women/mataafa-faatinoutumapu/ [Accessed 4 March 2018]. Price, M., 2015. The bodymind problem and the possibilities of pain. Hypatia, 30 (1), 268–284. Quijano, A., 2007. Coloniality and modernity/rationality. Cultural Studies, 21 (2–3), 168–178. Reindal, S., 1999. Independence, dependence, interdependence: some reflections on the subject and personal autonomy. Disability & Society, 14 (3), 353–367. Siebers, T., 2008. Disability theory. Ann Arbor, MI: University of Michigan Press. Suaalii-Sauni, T., Tuagalu, I., Nina Kirifi-Alai, T. and Fuamatu, N., eds., 2018. Su’esu’e Manogi: in search of fragrance: Tui Atua Tupua Tamasese Ta’isi Efi and the Samoan indigenous reference. Honolulu, HI: University of Hawai‘i Press.

96  Juliann Anesi Wehmeyer, M. and Schwartz, M., 1997. Self-determination and positive adult outcomes: a follow-up study of youth with mental retardation or learning disabilities. Career Development and Transition for Exceptional Individuals, 63 (2), 245–255. Wehmeyer, M.L., Argan, M. and Hughes, C., 1998. Teaching self-determination to youth with disabilities: basic skills for successful transition. Baltimore, MD: Paul H. Brookes. William, P. and Shoultz, B., 1982. We can speak for ourselves: self-advocacy by mentally handicapped people. Bloomington, IN: Indiana University Press.

7

Kamalawathie Gender, disability and leadership in Sri Lanka Niroshini Kandasamy and Karen Soldatic

I worked with disabled people in Padaviya when I first came here. I got to know the Divisional Secretary [DS] through that. There are only two rooms in that office. It was when I had just bought a hand phone. It was two in the morning when I got a call. I was called and told, ‘Kamala, you might not have heard it yet but, the Tigers [Liberation Tigers of Tamil Eelam] have attacked … and people have come rushing to DS office in fear. There are about five hundred people here. There are disabled people also here.’ We went there by seven. Some people had left their crutches behind and had come on their knees for fear of the Tigers. They had called me to see if I could get crutches and wheelchairs. Together with my organization I called other organizations and got those things within four days. On that day it struck me about how many disabled people must be in refugee camps. After that I went to a lot of camps. I saw that lot of disabled people didn’t have a single facility. Some people would come and give bread. They would announce on the loudspeaker that food was being given. There were two deaf people. Everyone else had gone to eat but these two didn’t know because they couldn’t hear. Nobody had told them either. It was only when I asked them why they are not eating that they realized that food had been given. I noticed that disabled people if they can’t run, they can’t get things. If they don’t have a wheelchair they can’t go to the relevant place to get things that are given. They can’t bathe. They don’t know what time things are given at. Nobody knew sign language. So, because of that I work in relation to that. So, I did a project for disabled refugees to enable them to do something for a living. While giving women their rights I included them in development programmes. In these excerpts, Kamalawathie reveals the complex landscape of disability leadership in Sri Lanka along the multiple axes of war, poverty and gender inequality. It is clear that the effects of Sri Lanka’s 30-year armed conflict on the everyday struggles of disabled people in refugee camps require forms of disability leadership that are dynamic and highly targeted. Moreover, the politics of disability in Sri Lanka requires a closer look at the colonial, state and global powers that have created the conditions for multiple injustices. Kamalawathie’s

98  Niroshini Kandasamy and Karen Soldatic leadership, therefore, goes beyond her advocacy for structural changes for women with a disability in Sri Lanka and must be viewed against the ongoing violence on the war-torn island that is embodied in the social and political realities of all disabled people. The activism of women with a disability in the Global South is critical to challenging the oppressive systems of power that operate within postcolonial societies (Ghai 2001, Parekh 2007). Women’s disability leadership is essential in advancing the rights and dignity of not only women with a disability, but all people with a disability in the Global South (Grech and Soldatic 2016). The passionate efforts of women with disabilities in their leadership roles have successfully mobilized disabled women and, across the Global South, this has increasingly resulted in positive legal and social outcomes for women with disabilities more broadly. Within Sri Lanka these victories include the government’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the implementation of measures to address the multiple forms of discrimination faced by women with disabilities (Samararatne et al. 2018). The leadership of women with disabilities has also seen women with disabilities actively included in transitional justice strategies in the aftermath of the armed conflict, such as the Report of the Public Representations Committee on Constitutional Reform (2015) and broadscale advocacy through the Women’s Parliamentary Caucus (Samararatne and Soldatic 2019). For the first time, these initiatives refer explicitly to women with disabilities and their fundamental rights. Women’s disability organizations, such as the Association of Women with Disabilities (AKASA), provided some of the first disability services to women who acquired a disability during Sri Lanka’s armed conflict (Kandasamy et al. 2016). All these efforts have been largely driven by longstanding leaders of women with disabilities, and the emergence of new leaders through the support and mentoring offered by women such as Kamalawathie. These developments were, and still are, critical advancements that are shaped by the representative voices of women with a disability. Very little is known about how women become successful disability leaders in the Global South. As well documented by women with disabilities in the Global North, core leadership roles within the disability movement have been taken up by men, with few opportunities afforded to women with disabilities. As Kandasamy et al. (2017) have documented, this is partly due to longstanding cultural norms around what is acceptable for women and, in the interstice with disability, further barriers emerge with cultural processes of stigmatization around disability. These two socio-cultural processes combine to make invisible the ways women with disabilities are carving out new avenues for gendered-disability rights on the ground. In this chapter, we address this significant gap in the disability leadership and activism literature by exploring the life journey of Kamalawathie (herein Kamala), a key leader of the women with disabilities rights movement in Sri Lanka. We argue that Kamala’s narrative of her life journey is central to understanding her gendered-disability leadership, as it emerges through her own self-­reflexive engagement with her impairment and through the challenges she faces as a

Kamalawathie  99 woman with a disability living in the Global South trying to realize her ambitions, life goals and desires (Shamir and Eilam 2005). As Peacock and Holland (1993) contend, the rich narratives of reflexive life stories can provide leaders with a repertoire from which they can achieve collective goals, interpreting how their personal reality is connected to the broader struggles and challenges of the collective identity they identify with. This personal–collective reflexive engagement thus gives greater meaning to a person’s own life journey and the paths that they forge (Peacock and Holland 1993). The ideas of ‘success’ and ‘authenticity’ for a disability leader are deeply embedded in their subjective justification for activist tendencies, strategies and tactics. Through the intra-personal interpretations of their everyday struggles, their identity is validated within a highly discriminatory society. As we will illustrate through Kamala’s narratives, women with disabilities who emerge as leaders within the movement justify their activism through their interpretative engagement with their life stories. We use ‘stories’ here rather than ‘story’ to denote the ways that moments, events and experiences are not just linear reflections, but are worked through with ongoing reflection via an internal dialogical loop, where each moment of story reflection is reinterpreted to give new meaning to past events and how these were initially interpreted, to forge new meanings, strategies and tactics as movement leaders. This analytical frame is deliberate. It illustrates that women with disabilities are more than mere interpreters of their individual behaviour: they develop reflexivity that is engaged, critical and collaborative (Shamir and Eilam 2005). Kamala’s gendered-disability leadership is thus an unfolding process of individual and collective movement, with the multiple internal dialogical narratives that organize her life narrated through struggle for oneself and intertwined with responsibilities for another’s struggle. The chapter draws on two interviews with Kamala in 2015 and 2016, each interview lasting around two hours. The interviews covered different aspects of growing up with a disability in the public and private realms of her life, thus bringing ‘life’ to historical contexts in which the self is both storyteller and the stories that are being told – the self becomes discourse (Peacock and Holland 1993). The interviews were later translated and transcribed into English and analyzed using a thematic approach. It explores the accounts of her life in terms of advocacy, empowerment and social justice for marginalized groups and presents a way for previously unheard voices to be heard and people’s experiences to be documented (Gluck 2008). Kamala was born in 1958 in Sri Lanka to a working-class family comprising her mother, father, three brothers and one sister. When Kamala was four years old she had a fever and awoke one night feeling immense pain in her legs. Shortly after she was admitted to hospital she learned that poliomyelitis left her with extensive paralysis in her legs. Having experienced different challenges and hurdles throughout her childhood, Kamala became aware that girls and women with a disability navigated multiple forms of discrimination due to their gender. She began challenging the social and cultural norms of her community, eventually becoming a woman disability leader and advocating at local and state levels in

100  Niroshini Kandasamy and Karen Soldatic Sri Lanka to bring about change to the injustices facing women with a disability. Our decision to focus only on Kamala was aimed at eliciting in-depth life stories that reflect how attentiveness to practices and experiences over the life course can open up new spaces of knowledge around disability activism and leadership, and of ‘how she might construct herself’ (Ghai 2002, p. 62).

Leadership in disability movements Disability leaders in the Global South play a vital role in promoting social inclusion and safeguarding the human rights of all people with a disability, importantly through participation in politics to ensure that governments are making concerted efforts to implement disability policies (Meekosha 1999, Opokua et al. 2016). Often the challenges of disability advocacy in the Global South require leadership that engages multiple axes of difference, including poverty, rurality and genderbased/ethnic-based discrimination. Anita Ghai (2002) points out that the elitist and masculinist leadership of disability rights activism in India marginalizes disabled people when it borrows western-centric views of disability that overshadow the specifics of the Indian dilemma. Ghai (2002) further argues that women’s disability activism must be located within disability and feminist movements. Thus, the importance of disability leaders in transgressing the multifarious and marginalized position of people with a disability is crucial to accurately representing the unique needs of people in specific Global South contexts (Powers et al. 2002). Leaders are defined by their ability to influence the thoughts, behaviours and/or feelings of others (Gardner 1995). They can be viewed in terms of their role and process, as people whose vision, courage and influence advance their organization, community and the world (Adler 1997). Leaders’ life stories are an important source of information for understanding leadership behaviour: ‘Leaders produce biographies … because biographies form the basis of their self-concept as leaders, and as a leadership act that aims to influence the followers through the messages the biography conveys’ (Shamir et al. 2005, p. 16). Leaders’ life stories are self-narratives that show how and why they enact desires and act in certain ways over time (Atkinson 1998). There is abundant scholarship on leadership; however, only a few studies recognize and explore leadership within disability movements, and these are commonly focused on the Global North (for example, Kasnitz 2001, Foster-Fishman et al. 2007, Caldwell 2011). In their study, Foster-Fishman and colleagues asked how people with a disability became leaders themselves and found that leadership is a personal journey that is nurtured and facilitated. Disability leaders described processes of becoming that emerged throughout their life, often tied to a catalytic experience of oppression that gave them no choice but to lead, ‘when it affected my life to a point where I was being denied the opportunity to do some things’ (Foster-Fishman et al. 2007, p. 348). Here, disability leadership emerged out of struggle, thereby attesting to the existence of key leadership skills: a strong will, confidence, independence, determination, ability to cope with difficulty and resilience. A closer look at Kamala’s life stories shows that leadership development out of struggle was a narrative theme that represented

Kamalawathie  101 not only her personal experiences of disability, but also a collective story about the struggles of the group she belonged to – women with a disability. Moreover, she articulates her advocacy through her life stories as a matter of survival and growing awareness of the multiple injustices facing women with a disability, including rurality, poverty and armed conflict. In this respect, Kamala’s leadership is grounded in locally embedded disability injustices that provided further motivation to promote the rights of all women with a disability.

Gendered-disability movements in Sri Lanka: a matter of survival Disabled women’s activism in the Global South emerges from spaces of community organizing and gender movements that have traditionally excluded disabled women (Ghai 2002). Further, the nature of disability activism in the Global South is often presented as fragmented and under-resourced, in which collective mobilizations for change are driven by western ways of framing disability that tend to universalize minority experiences of disability (Chouinard 2015). We suggest that recognizing the unique experiences of disabled women’s activism in the Global South is necessary and requires a closer look at those involved within the social and historical context of their world. Kamala’s local organization focused on enabling women with a disability to achieve their goals of sustainable livelihoods, families and households, for instance (Mendis 2004). Underlying this grassroots advocacy are wider discourses and experiences that intertwine to produce sites of mediation and change, illustrating the complex landscape of disability leadership in the Global South (Canning 1994). Campbell (2009, p. 112) notes that the paucity of historical scholarship on representations of disability makes it difficult to trace disability activism in Sri Lanka. Kamala’s life stories indicate that disability rights emerged in Sri Lanka as a social and political phenomenon through global and local influences. In 1981, Sri Lanka ratified the Convention on the Elimination of all forms of Discrimination Against Women. Before that, disability had appeared sporadically on the political agenda, such as in the Mental Disease Ordinance in 1873, Mental Disease Act 27 in 1956, and Widows and Orphans Pension Scheme in 1906, which relates to girls and women of all ages with a disability. It is in recent developments from the 1980s onwards when the rights of people with a disability have been made more explicit. To this end, Kamala’s disability leadership during the 1990s and 2000s emerges from a transformative period in Sri Lanka’s national disability agenda. The raft of legislation and legislative commitments enacted by the Sri Lankan government during this time indicated a shift in disability advocacy, as seen in the Protection of the Rights of Persons with Disabilities Act in 1996, later refined in 2003. In 2007, Sri Lanka signed the United Nations Convention on the Rights of Persons with Disabilities, though ratified it only in 2016. In addition, key policy documents have been developed, such as the National Action Plan for the Protection and Promotion of Human Rights 2011–2016, which contains focus areas and goals regarding women with disabilities.

102  Niroshini Kandasamy and Karen Soldatic Furthermore, the emergence of peak civil society organizations, such as AKASA and the Centre for Women and Development (CWD), came under the purview of the Ministry of Social Services to provide a variety of supports to women with disabilities, including legal services, training and counselling services that aimed to meet the real needs of women with disabilities affected by armed conflict, poverty and rural living. In addition, community-based rehabilitation, introduced in 1994 through the World Health Organization, has assisted disabled women, though it is not known how effective community-based rehabilitation has been in the Sri Lankan context. Despite these growing efforts, women with a disability remain marginalized from both scholarly research and disability social policy and practice (Samararatne and Soldatic 2015). Finally, it should be stated that disability activism in Sri Lanka is also shaped by high-risk employment in the Middle East for poor rural women (Campbell 2009, p. 114) as well as the armed conflict, natural disasters, an ageing population and malnutrition. The women’s disability movement in Sri Lanka recognizes that all people with a disability must be given equal human rights and freedoms, ‘persons who, as a result of any deficiency in their physical or mental capabilities, whether congenital or not, are unable by themselves to ensure for themselves, wholly or partly, the necessities of life’ (Protection of the Rights of Persons with Disabilities Act No. 28). There are over 1.6 million people with a disability living in Sri Lanka and just over 900,000 of them are women (Department of Census & Statistics 2012, pp. 132–135). The government recognizes that women with disabilities face additional pressures due to their gender which prevent their access to basic needs, such as financial assistance, employment and formal education (Ministry of Social Welfare 2003, pp. 24–25, ICES 2017). Yet it is well established that there are inadequate mechanisms in place to ensure, protect and promote the rights of people with a disability. There is a recognized need for further research and planning (Peiris-John et al. 2013). Despite the emergence of key disability organizations, there are very few women disability leaders at key decision-making forums; Kamala is one of these women. Her unique insights as a woman with a disability remain critical to advancing the gendered-disability agenda in Sri Lanka. As we suggest in this chapter, Kamala’s disability leadership experiences should be understood not only in relation to her role and processes involved in mobilizing women’s disability issues, alongside rurality, poverty and ethnicity. Her gendered-disability leadership should also be viewed as an individual construction of resistance against cultural normative discrimination that has accumulated over her life course.

Presenting the life stories of Kamala: gendered-disability leadership As we mentioned earlier, Kamala’s achievements as a leader of gendered-­disability activism are in response not only to her personal experiences of hardship and resilience, but also in her recognition that women with a disability in Sri Lanka continue to be denied basic needs. Kamala’s sense of leadership, therefore, is viewed

Kamalawathie  103 as an ongoing process in which her sense of self and life stories play a central role. In the following excerpt, Kamala reflects on the current state of disability activism in the Global South: In the Asian region the woman is considered lower, inferior, and she’s quite pressurized, even the non-disabled women are fighting for equal opportunities with men, so when you become a disabled woman the situation is even worse because then you are not only [a] pressurized woman, you have added the disability. It’s a bit worse in rural areas more than the urban areas because the people in general are not educated, they have no awareness of how the law functions. Suppose the father rapes his daughter or neighbour, the family won’t go against the father, also there’s a tendency with drugs and alcohol especially in the rural areas … in the rural areas a woman is suppressed by the man, a man can afford to do anything, any mistake. Everything I have formed at AKASA, I have been getting the support from all the government departments and I have maintained a stable relationship with all the politicians, even the ministers and president. I would personally know them. Even now people will call me, and I have become the unofficial job provider because I have contacts with them, and because I know people I am in a position to provide people with jobs … there’s a healthy relationship because of the work that I’ve done. Change is a really tough job, but as long as there are other women who would come forward like me it is possible, as long as there are politicians in parliament who can stand up for people with disabilities there is a possibility, as long as there is a representation of people with disability where the national policies are formulated, where the constitution is formulated. If you can have a representation in those places I think we can expect a big change. In Kamala’s views of gendered-disability experiences, the implications of activism are tied to multiple expressions of marginalization that require strong leadership: ‘as long as there are other women who come forward like me it is possible’. Her leadership is located within the wider disability movement that needs ‘representation’ of women with a disability for real change to occur. The life stories presented in this chapter are only glimpses into Kamala’s life and do not do justice to the complexities of her life. Our intention was not to cover all of the themes and experiences that emerged from Kamala’s life stories. Instead, in the remaining sections of the chapter we show how Kamala’s everyday gendered-disability leadership is organized around five main themes that are tied to her life stories: personal struggles, social support, resilience, collective cause and change. Personal struggles across the life course The ‘turning points’ in Kamala’s life thrust open moments of realization and awareness as well as creating a sense of learning and empowerment (HesseBiber and Leavy 2006, p. 150). Her life stores weave in and out of achievements,

104  Niroshini Kandasamy and Karen Soldatic struggles and motivations which are central to how and why she became concerned with meeting the everyday needs of women with a disability as well as advancing strategic decisions at the political level to address disabled women’s multiple oppressions. Kamala’s leadership emerges out of personal struggles across the life course; her paraplegia was a turning point in her life. The focus of her life stories, however, is not so much about the medicalization of her disability as it is about the social stigma that resulted. She experienced an early awareness of the social injustices of living in a community that made her physical disability affect all aspects of everyday life, as she describes in the following sentiments: As a child I was quite good in sports, but I couldn’t take part in sports because I had a disability. There I was cornered, and I was willing to take part in cultural performances like dance, but I couldn’t because of the disability and then normally in Sri Lanka the schools have a morning assembly-like function. It happens usually like once a month where all the students gather and they exhibit, they showcase their talents. So, I couldn’t take part because there were stairways and the morning meetings were on a platform. As a disabled woman, as a woman with a disability, I had a lot of challenges to face at school as well as getting a job so I was determined to fight [for] my rights so that’s how I became involved in this [disability activism]. The school environment wasn’t conducive, the job environment wasn’t conducive, but I had taken part in wheelchair competitions abroad in countries like Switzerland and Japan and there I had come to know that people with disabilities had some capacity to do something, so that was some kind of motivation to come to Sri Lanka and initiate this programme, initiate this kind of programme. Kamala’s life stories are described through a series of events that produced a strong sense of self. Her personal experiences are articulated in response to social norms that were circulating in her community, and the moments in her private life that enabled her to formulate a sense of agency and act towards achieving gender restructuring for women with a disability (McNay 2003). Kamala sees her leadership as a natural process, one that emerged out of not only personal struggles but a growing awareness of a global disability movement that needed to question the norms of society. The process through which she arrived at her resistance is internalized, thus explaining her leadership as one based on personal points of view developed from personal experiences, personal reflection and personal learning (Shamir and Eilam 2005, p. 397). The right support at the right time Her childhood featured contrasting experiences of living with a disability that made her realize how important it was to receive the right support at the right time. Kamala’s experiences at school shaped her sense of not belonging in a society that excluded her because of her disability. By comparison, she revealed that

Kamalawathie  105 life outside of school – with family and friends – presented completely different experiences in which she was never excluded or made to feel differently abled: When I was around fifteen or sixteen my usual routine was to come home after school, have lunch and then with the neighbours and friends we will head towards the jungle and we pluck coconuts. There are variations of coconuts – young coconut, middle-aged coconut and some coconuts are already fallen on the ground, so they would halve them on the spot and drink, eat the insides there itself. There are other fruits such as veralu, eraminiya, and eraminiya is a fruit with quite a lot of thorns and you have to climb up a tree to get them and others would usually climb and I was also climbing holding on to the branches and I could do that very very well because I wasn’t chubby like now (laughter) … I didn’t feel that I was disabled. I took part in everything because normally in a family with a disabled child the mother won’t let her wash her clothes, mother won’t let me to do the daily chores and won’t let me to do the household chores, but I was a part of everything. For example, I was telling about my brother who used to blast me if I didn’t do anything, if I just idle[d] around; so disability was no excuse at all, so that means that my family had no discrimination towards me because of my disability. Similarly, in a short collection of stories of women with a disability in the Global South, families were shown to play a formative role in maintaining a sense of normalcy in their lives, as one woman reflected, ‘from an early stage my parents ensured that I participated fully in family life’ (Epstein 1997, p. 28). Similarly, Kamala revealed that her experiences of family life were powerful motivations driving her desire to be a representative voice for women with a disability: ‘I feel very much empowered by the family support and also today … if the family isolated me I would just be a cornered human being rather than be actively engaged in activities’. Despite the family support, she faced a number of challenges that confronted her in everyday life. For example, she recalled the cultural consequences of being a woman with a disability when she said: All I needed was to be an independent woman because my neighbours and village people used to say, ‘Oh what a poor thing, if I were a boy then it would have been no problem, now her brother will have to earn.’ That’s what my well-wishers used to say so I was inspired by that and wanted to prove them wrong and I wanted to be an independent woman with a good quality of life, a strong woman. Being excluded by society created ongoing challenges for Kamala over the life course; however, such challenges were constructed as stories of motivation, revealing the possibility that spaces of support and continuity can offer for people with a disability. She implies that her understanding of gendered-disability activism emerges from the everyday struggles that women face due to social and cultural

106  Niroshini Kandasamy and Karen Soldatic pressures, including from ‘village people’. Her social view that women with a disability should not be treated differently speaks to her strong self-­concept – ‘independent’, ‘good quality of life’, ‘strong woman’. The experiences of receiving support from her family are contrasted against the world she inhabited to reveal life stories of hopes, dreams, desires and plans for the future, a personalized leadership script in which her resistance and agency in the face of hardship play a central role. Resilience and personal achievements The themes of resilience and achievement reflect the unfolding events of process and change during Kamala’s young adulthood. In 1987, she was employed as a gem-cutting instructor, where she took on various roles as administrator and programme coordinator. Kamala has been awarded numerous certificates, prizes and medals for her various achievements, for example, in wheelchair competitions and disability rights advocacy. These are recorded in a photo album which displays newspaper articles and photographs that feature her achievements: in some photographs she is adorned with several medals; newspaper articles record her achievements through words of enthusiasm and praise; interviews display her passion and commitment to disability rights. Her presence in the public sphere is marked with confidence and the images are both symbolic and actual testaments to her success as a resilient and determined gendered-disability leader. One particular photograph of Kamala receiving an award from the Islam Corporation in 1997 prompted questions about how she experienced the workplace: How did women with a disability experience working life in Sri Lanka? Kamala’s stories of the workplace described different spaces of discrimination and lost opportunities that were intertwined with hopes and dreams, frustration and determination: When I was in my first year A levels I came to know that my polio could be cured by acupuncture but that required a lot of money so with an uncle I came to Colombo for acupuncture treatment and I had the acupuncture treatment for two years continuously, but it didn’t get cured. I couldn’t complete my education either so then two years had lapsed and then because I couldn’t complete my education, I went to art and craft school for people with disability, training people with disability. That was in Seeduwa [Vocational Training Centre – Department of Social Services]. I underwent training for one year and there did training for gem cutting. At Seeduwa they had an examination to select people and twenty people had been chosen. I was ranked first out of the twenty and then I worked at a private company for two years and then I joined a gem-cutting corporation. The main challenge I had was to find a proper boarding place because the boarders didn’t like to have me in because of my disability, ‘If we have you we would have to do the work for you’, is what the boarders used to say. So, I had to travel to Colombo from my place, so, basically, I set off at four in the morning and it will be around eight in the night when I get back home and

Kamalawathie  107 again I set off at four in the morning. It’s about 100 kilometres now but earlier when the roads were not developed it was about 56 miles and then over the time I met a friend who had a speech disability and her father asked me to come to their flat and that flat had of course 58 stairs, on the fourth floor, and whenever I used to climb up and down the stairs my habit was to count the stairs. That was in 1983 to 1987. The first week I got fever because it was too much for me and I had boils on my palms. And then the next challenge was the travel on the bus because the buses are crowded all the time. Sometimes I hung onto the edge and sometimes I had fallen off the bus and those scars are still left. After such struggles when I got to the office my office was underground and that meant I had to climb down 38 stairs. Sometimes I had almost given up on the job but then if not for this job I can’t move forward. Kamala’s stories show that her struggles in the workplace were not related to her physical impairment per se but to a society that was not designed to accommodate people with a disability. Her early career experiences are told as stories of learning that seemed to fall into three phases: being successfully selected and entering a venture, facing ongoing challenges, and being resilient in order to ‘move forward’. Kamala’s engagement in the gem-cutting venture was overshadowed by ongoing challenges, such as travelling long distances and climbing up and down stairs, resulting in ‘boils on my palms’. It was also evident that her stories of learning and commitment to improving the livelihood struggles of women with a disability were told through her personal experiences of resilience amid severe hardship. This form of constructive sense-making in her life stories revealed her reasons and the meanings she gave her leadership in the disability movement. Kamala’s resilience and achievements were closely intertwined to her sense of achieving personal goals, sharpness of thought and being ready to face challenges. Working for a collective cause: distributive justice and solidarity Kamala’s strong sense of self – resilient and goal-focused – constructed her values and principles about the needs of women with a disability. In her gendereddisability activism, Kamala became a key figure in decision-making, planning and advocacy. Her stories revealed that while she tried to enact change on her own, she quickly realized that she needed to form a collective, so in 1989 she formed the Sri Lankan Federation of Women with a Disability with five other women. From attending conferences, both nationally and internationally, Kamala became aware that changes to improving public access, rights and community attitudes towards people with disability required a stronger response at the grassroots level, and in 1995 she reorganized the existing initiative to form what is now known as AKASA. At its inception, AKASA had 36 members and it has made invaluable contributions to developing a more inclusive Sri Lankan society. For example, it was involved in implementing some of the first disability services to Tamil women who acquired a disability during the armed conflict between the Sri  Lankan government and LTTE that ended in 2009. For many of the Tamil

108  Niroshini Kandasamy and Karen Soldatic women involved in AKASA, it was the first time they had spoken to Sinhalese women. Kamala describes her experiences of working across multiple axes of difference for women with a disability: I carried out research based on 10 districts, divisions. There the result was that Anuradhapura was known as the place where the poorest among the poorest live because the disabled men as well as women were burdened so that’s why I picked Anuradhapura for my location [for AKASA]. The foremost challenge was the school education, they were deprived of the school education, because they didn’t have a proper school education they were not entitled to any employment opportunities. Also, most of their parents were farmers or peasants so they didn’t have a fixed or proper income. They had protection issues because they experienced sexual abuse all the time and sometimes in the poorer areas they had to go to welfare centres, and even there they had some meal packets. Sometimes they were not in a position to get the facilities that they were entitled to because of their disability. For example, someone with a hearing deficiency may not hear what the officers say over the double speaker so they won’t get the meal packet. So, sometimes with the disabilities the people can’t go in and queue so they won’t get the rice packet. Most of these welfare centres do not have proper toilet facilities because most of these toilets are open so what a normal person without a disability would do is they would just go in the jungle but the disabled women can’t afford to do that and one mother had three girls who were blind because during the war period people used to go to the jungle for security reasons but that particular mother couldn’t do that because all three of her daughters are blind. She was stuck at home despite the security concerns. She continued her stories to show how gender, employment and ethnicity became formative to building new structures of community association and collective action. She [a woman with disability who identified as Tamil] hadn’t even seen a Sinhalese before. She hadn’t spoken to a Sinhalese before that either. It was on the day of the meeting that she learnt that a Sinhalese was conducting the meeting. She had wondered whether she should go for a meeting being done by a Sinhalese. I had various workshops immediately after the war in various areas like Trinco, Batticaloa, Mattakalappu, Ampara, Anuradhapura. The very first meeting was in Batti and that consisted of a large number of Tamil women and they said that today is the first time we saw a Sinhala lady approaching us because so far there had been a misunderstanding about the Sinhala ladies. I had no problems with Muslims or Tamils because I had been working with Muslims from ’87 to ’98. I had been participating in a project with the people from Valea and Tamil people from Mullathivu and in the end we couldn’t part from each other because we were bonded to each other.

Kamalawathie  109 First it was a leadership training programme with the participation of 25 women – Sinhalese, Tamil, Muslim – for eight days, they were resident in one place so we were working together and then there was a mass-scale exhibition called Diaktikira which was held with Sri Lanka’s independence Commonwealth exhibition, so there we had the chance to exhibit the women’s products, such as weavings, hand crafts, whatever it is. We all got together and like came up with these products which are handcrafts and hand made. The other thing is we went on a trip, so the people from Anuradhapura and Kolangarutha, to visit areas like Batticaloa, Mullathivu, and people from Batticaloa and Mullathivu had the chance to visit areas like Anuradhapura and Kolan … They had field officers who were Sinhalese as well as Tamil interpreters. Every field officer could speak Tamil and Sinhala. Even today I was invited to those who had the training programme, even today I’m invited to their residency. Most of the people are still engaged in this income-generation programme, some have failed, some have flourished and those who have flourished have kept in contact, those who are flourished they have developed their business, in handicrafts, they have opened businesses. Those who have failed we have given them a fresh chance, we are introducing new programmes because their projects are over so we are introducing those who have failed to other organizations. The ‘meaningful interactions’ Kamala describes between Tamil, Sinhalese and Muslim women are recognized as being necessary to successfully navigate concepts of empathy and reconciliation (Somerville 2008). Central to these collective actions are the understandings that ‘bridge-building activities’ between different ethnic and religious communities at the grassroots level are often facilitated by remarkable individuals, working through community organizations to organize social, educational, sports and cultural activities (Harris and Young 2009). As Kamala explained, the process of organizing disability programmes for an ethnically diverse group of disabled women was a new experience that ultimately enacted distributive justice and solidarity. Notwithstanding the deeply historical and political constructions of violence, neglect, oppression and systematic discrimination (Grech 2015), Kamala’s perspectives of interethnic encounters of cross-community solidarity revealed that Tamil, Sinhalese and Muslim women embraced each other, transcending divisions that are deeply ingrained in their communities. As a representative voice for these women, Kamala acted as a powerful medium through which they were learning about their rights. This ability to teach is clearly essential in her leadership, but there is also an element of peace and reconciliation that appears to reflect Kamala’s concept of leadership. The importance Kamala gives to these stories is less about the actual interactions between the women than it is about the meanings she gives to those interactions – the consequences of armed conflict and shifting relations between Tamil, Sinhalese and Muslim communities, of producing historical change.

110  Niroshini Kandasamy and Karen Soldatic Change and strengthening the voices of women with a disability The nature of service delivery that was overseen by Kamala has also reflected her ethos on continuously striving to meet the needs of women with a disability in Sri Lanka, as she said: I have worked in vast areas – from bottom areas to top areas like the United Nations – but I have never seen a place in Sri Lanka where people with disability are treated on equal grounds. They are always discriminated, even today. After undertaking an evaluation of disabled women’s living conditions in 2010, Kamala presented the recommendations to then president of Sri Lanka, Mahinda Rajapakse, and received funding to provide employment skills to women. This was a significant breakthrough in Kamala’s activism. She explained that the concerns she raised at meetings with local government officials were repeatedly rejected and redirected as priorities for higher ranking officials. Her successful meeting with the president was thus a crucial moment in her gendered-disability leadership. Her life experiences justified her position as a leader for women with a disability: in 1996 she offered insights to the development of Sri Lanka’s first disability legislation; in 2003 she was heavily involved in drafting specific legislation and policies, including the National Plan of Action on Disability outlined in the National Disability Policy that covers a range of sites for disability inclusion, such as school, the workplace and public transport; in 2006 she represented Sri Lanka at the United Nations to contribute insights to developing the Convention on the Rights of Persons with Disabilities – one of the key outcomes was that the Sri Lankan government made a landmark decision to make all public places and public buildings accessible for people with disabilities. Despite her ongoing policy development as part of her disability activism, she explained that she still advocated for individual women because the process to achieve government assistance for women was complex and ongoing, particularly for women in rural areas.

Conclusion Kamala’s life stories are the basis of her gendered-disability leadership. Her stories tied together the ‘personal’ and ‘political’ in ways that highlight the individuality of advocacy and expressions of social injustice. At the same time, it was evident that Kamala’s efforts to mobilize disability policy change were expressions of collective outcomes of solidarity, possibilities and visions for a better future. Kamala’s understanding of womanhood was central to her mobilization of gendered-disability activism in moments when such perspectives did not exist. It is important to recognize that her historical empowerment emerges from a variety of experiences that were canvassed across intersections of ‘poverty, disability and womanhood’ as well as the social and cultural influences that produced a sense of agency (Mohanty 1991, pp. 2–4). This context clearly offers new ways

Kamalawathie  111 to think about leadership in gendered-disability activism in the Global South. Understanding the personal and collective experiences of disability activists ­creates the need for new kinds of attention to approaching disability leadership as a complex landscape of diverse experiences, agency, strategy and persistence. Kamala’s gendered-disability leadership is not prescriptive of the type of disability leadership that needs to take place. Rather, her life stories provide a glimpse into how one woman’s struggles for independence took her on new paths that challenged the social and political norms of her world. Her disability leadership was articulated through life stories of personal struggle, support, resilience, collective cause and change. These stories developed her strong sense of self that justified her being a representative voice for women with a disability in Sri Lanka. Understanding disability leadership increases understanding of how resistance and agency operate across the life course, as constructions of the self and the collective, in contrasting spaces of support and exclusion, supporting people’s motivations to seek change. Our purpose in this chapter has been to contribute to discussions of disability leadership by exploring one woman’s life stories, which reveal how resistance and activism result in leadership in a true sense. We end the chapter with another excerpt from Kamala’s life stories, a quote that captures her gendered-disability leadership and alludes to the challenges that lie ahead: I feel so rich when I reflect on what I have done to the field because [in] areas like Anuradhapura and Tholanaru they hadn’t even known there is a field called disability. (Kamala)

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112  Niroshini Kandasamy and Karen Soldatic Epstein, S., 1997. We can make it: stories of disabled women in developing countries. Geneva: International Labour Office. Foster-Fishman, P., Jimenez, T., Valenti, M., and Kelley, T., 2007. Building the next generation of leaders in the disabilities movement. Disability and Society, 22 (4), 341–356. Gardner, H., 1995. Leading minds: an anatomy of leadership. New York, NY: Basic Books. Ghai, A., 2001. Marginalisation and disability: experiences from the third world. In: M. Priestley, ed. Disability and the life course: global perspectives. Cambridge: Cambridge University Press, 26–37. Ghai, A., 2002. Disability in the Indian context: post-colonial perspectives. In: M. Corker and T. Shakespeare (eds), Disability/postmodernity: embodying disability theory, London: Continuum, 88–100. Gluck, S.B., 2008. Women’s oral history: is it so special? In: T. L. Charlton, L.E. Myers and R. Sharpless, (eds) Thinking about oral history theories and applications. Plymouth: AltaMira Press, 115–141. Grech, S., 2015. Decolonising eurocentric disability studies: why colonialism matters in the disability and global south. Social Identities, 21 (1), 6–21. Grech, S. and Soldatic, K., eds, 2016. Disability in the global south: the critical handbook, Cham, Switzerland: Springer. Harris, M. and Young, P., 2009. Developing community and social cohesion through grassroots bridge-building: an exploration. Policy and Politics, 37 (4), 517–534. Hesse-Biber, S.N. and Leavy, P., 2006. The practice of qualitative research. Thousand Oaks, CA: Sage. International Centre for Ethnic Studies (ICES), 2017. Sri Lanka: women living with disabilities. Colombo: Committee on the Elimination of Discrimination Against Women. Kandasamy, N., Soldatic, K. and Samararatne, D., 2016. Peace, justice and disabled women’s advocacy: Tamil women with disabilities in rural post-conflict Sri Lanka. Journal of Medicine, Conflict and Survival, 33 (1), 41–59. Kandasamy, N., Soldatic, K. and Samararatne, D., 2017. Southern gendered disability reflections: the everyday experiences of rural women with disabilities after the armed conflict in Sri Lanka. Disability and rurality: identity, gender and belonging. Abingdon: Routledge, 178–197. Kasnitz, D., 2001. Life event histories and the US independent living movement. In: M. Priestley, ed, Disability and the life course: global perspectives. Cambridge: Cambridge University Press, 67–79. McNay, L., 2003. Agency, anticipation and indeterminacy in feminist theory. Feminist Theory, 4 (2), 139–148. Meekosha, H., 1999. Political activism and identity making: the involvement of women in the disability rights movement in Australia. Australia: Women with Disabilities Australia. Available from: [Accessed 24 December 2018]. Mendis, P., 2004. Training and employment of people with disabilities: Sri Lanka 2003. Bangkok: International Labour Office. Ministry of Social Welfare, 2003. National policy on disability for Sri Lanka. Ability Asia Country Study Series. Colombo: Sri Lanka Government and International Labour Office.

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8

Research, advocacy and activism A necessary interaction? Kelley Johnson, Rob Hopkins and Gerard Minogue

For many years people with disabilities, particularly those labelled as having intellectual disabilities, were constituted as subjects of research by others. More recently, a stream of research called inclusive research has been developed in which people with intellectual disabilities are active in initiating, undertaking and using research to advocate for social change on issues of concern to them (Walmsley and Johnson 2003). In this chapter, we argue that advocacy and activism are integral to inclusive research and that the involvement of people with intellectual disabilities in such research can be a precursor or an addition to their mobilization as advocates and activists, including taking on leadership roles as an outcome of inclusive research. In developing this argument, we provide an account of how doing research together can lead to the development of individuals and groups who become increasingly aware of their rights and who take a lead in their own forms of advocacy. The evidence for this argument comes from what began as a two-year national project on inclusive research in the Republic of Ireland and which has continued to change and develop over the past ten years. The momentum for this has been sustained because of the advocacy leadership roles of people with intellectual disabilities and the support of allies who have continued to advocate for its importance. We begin the chapter by briefly describing ‘inclusive research’ and its origins in order to highlight its importance for people with intellectual disabilities. We then provide an account of the evolution of the original national inclusive research project in Ireland and the ways in which inclusive research, advocacy and activism have developed and changed since the original project concluded in 2008. We end the chapter with a consideration of how far the Irish project has been consistent with the principles of inclusive research.

What is inclusive research? Inclusive research with people with intellectual disabilities has been defined as research which ‘involves people who may otherwise be seen as subjects for the research as instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users’ (Walmsley and Johnson 2003, p. 10). Walmsley and Johnson (2003) defined a set of principles for inclusive research which was

Research, advocacy and activism  115 recently revised in the light of later research and theory (see for example Nind and Vinha 2012, 2014, Nind 2014, Walmsley and The Central England People First History Project Team 2014, Strnadová and Walmsley 2017). These revised principles are: •• •• •• •• ••

research that aims to contribute to social change, that helps to create a society in which excluded groups belong, and which aims to improve the quality of their lives research based on issues important to a group, and which draws on their experience to inform the research process and outcomes research which aims to recognize, foster and communicate the contributions people with intellectual disabilities can make research which provides information that can be used by people with intellectual disabilities to campaign for change on behalf of others research in which those involved in it are ‘standing with’ those whose issues are being explored or investigated (Walmsley et al. 2017, p. 759).

These principles emphasize the integral relationship between advocacy, activism and inclusive research. This form of research aims to create positive social change, to be based on issues that are seen to be important by people with intellectual disabilities, to provide opportunities for people with intellectual disabilities to contribute to the research process and content and to provide information and knowledge that they can use in campaigning and advocating for change. The movement to inclusive research itself is integrally linked with advocacy and activism by people with intellectual disabilities and their allies. This can be seen in some of the factors which have led to the development of inclusive research: ••

•• ••

the movement in many countries away from seeing people with intellectual disabilities as ‘patients in need of care’ to acknowledging their rights as citizens. This is most clearly seen in the UN Convention on the Rights of Persons with Disabilities (2006), which stresses the importance of the rights of disabled people to participate in decision-making about their own lives the rise of self-advocacy groups that have given people with intellectual disabilities a collective voice (Walmsley and The Central England People First History Project Team 2014, Frawley and Bigby 2015) the development of policies in some countries emphasizing the need for people with intellectual disabilities to be involved in or to ‘control’ the decisions about their own lives (e.g. Valuing People Now in the UK (Department of Health 2009); European Disability Strategy 2010–2020 (European Commission 2010); the National Disability Insurance Scheme Act in Australia, 2013; and National Disability Inclusion Strategy 2017–2021 in the Republic of Ireland (Department of Justice and Equality 2017)).

Largely as a result of these changes, research in which people with intellectual disabilities are involved or actively participate as researchers has been increasing

116  Johnson, Hopkins and Minogue over the last two decades in the United Kingdom and in Australia, among other countries (e.g. Williams et al. 2005, Abell et al. 2007, Clement and Bigby 2010, Chapman 2014, Johnson et al. 2014, Riches et al. 2017). The ways in which people with intellectual disabilities have been involved in such research take a number of forms. Some self-advocacy groups in the UK have formed research groups that are involved in both initiating their own research and working with academic researchers (Townson et al. 2004, Walmsley and The Central England People First History Project Team 2014). Alternatively, people with intellectual disabilities may be employed as researchers as part of a funded project (Johnson et al. 2002, Williams et al. 2005) or recruited as volunteers by other researchers for particular projects.

No longer researching about us without us: developing inclusive research in Ireland 2006–2008 In 2006, inclusive research was just beginning in Ireland. Working on a two-year Marie Curie fellowship, Dr Kelley Johnson’s task was to develop a national project called No longer researching about us without us. This section of the chapter provides a summary of development of the project over two years. No longer researching about us without us had three main aims: (1) to develop inclusive research projects with people with intellectual disabilities in the Republic of Ireland; (2) to develop learning resources that could be used to support people with intellectual disabilities in doing research; (3) to begin working with people with intellectual disabilities on documenting their life stories. As the project evolved, it consisted of three stages: 1) starting out; 2) getting involved locally; and 3) embedding inclusive research. Stage 1: starting out There were few self-advocacy organizations in Ireland in 2006, and so the first stage of the project involved making contacts with services and groups who might be interested in developing inclusive research. Workshops on doing inclusive research were developed with the aim of bringing together service providers and people with intellectual disabilities in order to learn more about the issues and begin the design of their own research. In one of the first workshops held in County Clare, which was run with a group of eight individuals supported by services and staff from the Brothers of Charity, to which Rob Hopkins and Gerald Minogue belonged, people came together to share stories of their lives, talk about issues that were important to them and decide on research questions they wanted to explore. Three different topics of concern emerged. All these were taken up and developed during the initial project. All were action based and directed towards

Research, advocacy and activism  117 change. The first was the need for an evaluation of a coffee shop managed by one of the group members (Hogan et al. 2008, McGrath et al. 2017). The second was about the closure of a garden at a sheltered workshop in which many of the people involved in the group had worked. The group wanted to be sure that once the workshop closed, the garden they had created would remain intact (Minogue et al. 2008). The third topic concerned bullying, which some members of the group had experienced and about which all of them were concerned. In this first stage, a national reference group was established to support the project. This consisted of people with intellectual disabilities, academics and service providers. Stage 2: getting involved locally In the second stage, two of the research projects briefly described above were undertaken by the group of people with intellectual disabilities from the Brothers of Charity with support from allies and from Kelley. People with intellectual disabilities were involved in each stage of the research and used interviews, participant observation and photographs to gather and discuss the data they collected. Some members of the group became enthusiastic about doing further research and are still involved with what is now the Clare Inclusive Research Group (CIRG). Advocacy was involved, particularly in the Garden Story where the oral history report was used by the group to campaign for the garden’s continuing existence. In the short term, this was achieved, which was a source of satisfaction to the researchers, although the garden is now gone. The evaluation of the coffee shop led to some changes in its management and was partly responsible for local council installation of ramps making the shop more accessible. Bullying was seen as an important issue and people with intellectual disabilities did not want to do research but to take action on it. This led to a series of national workshops with service providers, people with disabilities, police and managers of a local public transport system. The workshops gave the people involved in No longer researching about us without us and others a heard voice and support from both the garda (police) and business. A national group against bullying was formed as an outcome of these workshops and has continued to advocate on this issue. This national group is led by people with intellectual disability who lead all components of the group’s advocacy efforts, creating wellstructured campaigns (see National Anti Bullying Research and Resource Centre, Dublin City University, www.antibullyingcentre.ie, and National Anti-bullying Advocacy Group, Trinity College Dublin, https://www.tcd.ie/tcpid/research/antibullying/antibullying.php). In the second stage of the project, other people in Ireland became involved. The added projects included: ••

The meaning of being a university student. This project was developed with the first group of people with intellectual disabilities who were students in the National Institute for Intellectual Disabilities at Trinity College in Dublin.

118  Johnson, Hopkins and Minogue

••

They interviewed other students at the university, took photographs of the parts of the university that were important to them, and held a focus group to discuss the issues and concerns they had about being students at the university. They used their research to lobby the Trinity College student union to have their status as students of the university recognized through the provision of student cards and access to facilities. Free time. This project involved a group of people with intellectual disabilities who learned how to facilitate focus groups with people with intellectual disabilities using a particular service in order to examine what free time meant to these service users. They used their report to raise issues of concern to them about restrictions on how they could use their free time with their service.

Stage 3: embedding inclusive research There was a risk that with the end of the national project, inclusive research would come to an end as well. However, a national organization representing services for people with intellectual disabilities in Ireland (National Federation of Voluntary Bodies) joined forces with the National Institute for Intellectual Disability at Trinity College to jointly sponsor and support the development of inclusive research. These organizations have continued to support inclusive research and the University of Limerick has now also become an important sponsoring body, providing courses on inclusive research and support for projects. By the end of the initial project, an inclusive research network was thus established on a national basis, with goals and a plan for its operation. Inclusive research was indeed taking off. At the conclusion of No longer researching about us without us, five research projects had been completed, two life stories had been finished, a national inclusive research network had been established and resources had been developed to support people with intellectual disabilities in doing research. Most importantly, people involved in the research were advocating and campaigning for change. The next section describes how inclusive research has been integrally linked with the development of advocacy and activism over the ten years since the initial project ended.

The Clare Inclusive Research Group and the Inclusive Research Network Following Kelley’s work around Ireland, the Brothers of Charity Services in County Clare decided to appoint an ‘inclusive research and self advocacy officer’, the first such position in Ireland, in order to support the work of people with intellectual disabilities who were interested in doing research. Rob Hopkins was appointed to the post in March 2008. In order to further expand the group of people with intellectual disabilities who were interested in doing research, people supported by the service were invited

Research, advocacy and activism  119 to attend an introductory training course. The course provided the participants with a basic grounding in the idea of research and encouraged them to identify issues that were important to them and about which they could conduct their own research. Ten participants took part in the training course with four support staff alongside the research officer. The CIRG still exists and is now part of a national Inclusive Research Network which has more than 40 members around Ireland and was established as a national network in 2008 (IRN 2018a). Developing local research projects The CIRG members began their work by raising issues that were important to them in the following areas: money and budgeting, holidays and travel, social life, relationships, and home and housing. These were eventually distilled into three projects: The Travel Challenge, A Home of My Own and Relationships Research. Research projects and advocacy were undertaken on each of these issues. The group that expressed concerns about budgeting for and having more control over holiday selection undertook a ‘travel challenge’. They organized an overnight trip and were supported in researching the costs and availability of transport and accommodation. One of the researchers had substantial mobility challenges, so additional research was devoted to the accessibility of the transport facilities at the local bus station in Ennis. The group’s experience of the trip was documented in photographs and circulated within the service in the form of a report (CIRG 2009), a drama (‘The Travel Challenge’) and a Powerpoint presentation. Three access challenges were noted: 1) at the hotel, an advertising sign was placed on the wheelchair ramp; 2) a baby-changing trolley blocked access to the handicapped toilet stall; and 3) the person using the wheelchair had to wait ‘a full 7 ½ minutes to be served’ at the hotel bar, while other customers who arrived after her were served first. These difficulties were duly reported to the duty manager and a return visit was made three weeks later to see if their report had triggered any changes. On their return, it was found that the sign had been removed from the ramp but the baby-changing facility was still blocking the toilet. Following the return visit, this was then also removed. Possibly the most positive achievement of this project came from the wheelchair researcher, who demonstrated to herself, and went on to report to her family, that it was ‘doable’ to use the local bus service – something she hadn’t done for 17 years. The researchers involved in this project developed an ongoing interest in the access challenges of other groups of people in their community and went on to conduct a community access audit around the airport town of Shannon in County Clare. They worked with people who use the local Family Resource Centre, a government-funded community development project, as well as with the vice chair of the Clare Wheelchair Association and a recently retired senior citizen to examine the issue of access in their community. As a result of this audit, curb ramping improvements were made by the town council and a comprehensive

120  Johnson, Hopkins and Minogue audit of the local banks’ counter facilities was ordered, with a view to installing a ‘lowered counter’ provision for wheelchair users. The Home of My Own research group created a film by the same name, featuring interviews conducted by members of the group with three people with intellectual disabilities about their independent living situation and the advantages accrued from being more in control of their lives through living in a home of their own (CIRG 2008). This film contributed to an appeal being lodged by the sponsoring organization of CIRG, the Brothers of Charity Services in County Clare, on behalf of people with intellectual disabilities, to grant them housing support for their rental accommodation. It is important to point out that the group’s input into the appeals process was suggested by members of the group themselves. They had already highlighted the issue of home as one of the significant themes in the group’s inaugural workshops held three months earlier. On being asked about the aim of the research, one of the researchers, Larry O’Bryan, wrote: ‘I want it to show that people with a disability are really involved in their own lives’ and ‘I would like to see everyone living in their own homes’. This comment was the initial impetus for researching the idea of independent living with a group of advocates from the Brothers of Charity Services. The concept of research which narrates the experience of people living in their own homes was also initiated by Larry, who saw the need for research to ‘tell stories people understand to change policy’. The third project concerned relationships and sexuality. This began with the development of life stories by members of the research group. These were then used to develop a series of plays (discussed later) designed to raise awareness and change attitudes in relation to the sexuality and relationships of people with intellectual disabilities. The initial study developed into national inclusive research on relationships. Going national In October 2008, the National Institute of Intellectual Disability, in collaboration with the National Federation of Voluntary Bodies, announced a series of inclusive research training workshops around Ireland. Researchers from the Clare Group attended, and the topics of home and relationships surfaced as key issues in the national training. The workshops led to a research project, All We Want To Say (Garcia-Iriarte et al. 2009), the first national inclusive research conducted in Ireland. The aim of this project was to explore what life is like for people with intellectual disabilities and how the lives of people with intellectual disabilities could be improved. The project led to two further studies, Where We Live (Inclusive Research Network 2009) and Relationships and Supports (Inclusive Research Network 2010), which were undertaken as part of the Inclusive Research Network. Research involving 16 focus groups was used to gain the views of people with intellectual disabilities about relationships. The CIRG was at the heart of this research and undertook five of the focus groups. The research found that people wanted ‘Choice, Support and Control’ in the area of relationships.

Research, advocacy and activism  121 A further research project has since been undertaken by the Inclusive Research Network (including CIRG members) to examine what it is like for people with intellectual disabilities to move homes (‘Our Homes’, Inclusive Research Network 2015), what choices they have in such moves and their preferences for support and housing. Using research in drama From their initial interest and research in relationships, the CIRG developed two plays (No Kissing and Leaving Home) using Forum Theatre (Boal 1979), which were performed at national conferences and other disability forums in Ireland. Forum Theatre stages a socially oppressive situation in order to induce empathy in the audience, who are actively encouraged to intervene and come on stage to enact solutions to the dilemma that has been played out. It ‘asks its audience questions and expects answers’ (Schechter 2003, p. 266). The use of drama based on research brought the group to the notice of the media, and two researchers were called to participate in a discussion panel about learning disability and sex education on a national radio program (Pat Kenny, ‘Morning Ireland’, March 2010). From research to campaigning As the Clare researchers grew in confidence through participating in training, carrying out research, and disseminating their findings to their peers and the broader community via interactive and provocative methods, the group’s efforts in lobbying for change gained momentum as well. In March 2011, two researchers from Clare, Gerald Minogue and Joe McGrath, and the group’s coordinator, Rob Hopkins, were invited as representatives of the Inclusive Research Network to consult with the government’s legislative advisory body, the Law Reform Commission, on reviewing the Criminal Law (Sexual Offences) Act of 1993. Under Irish law, this Act prohibited penetrative sexual activity with a person with a learning disability unless they were married. This was the first time that researchers with an intellectual disability had presented to the Law Reform Commission. The commission published its Consultation Paper on Sexual Offences and Capacity to Consent position paper (Law Reform Commission 2011), soliciting input from interested parties and proposing the repeal of the Act, subject to the introduction of certain safeguards regarding vulnerable adults. The researchers regarded this proposal as a substantial affirmation of the work they had invested in researching their peers’ attitudes and presenting their views to the commission. The CIRG followed up this initial consultation with continuing involvement in a campaign to change the law, which has included further discussions with the Law Reform Commission and with members of parliament. For example, Ger Minogue was invited with fellow CIRG member Brian Hogan to consultations with then-senator Catherine Zappone on her private member’s bill (2014). The law was finally changed in 2017 (Criminal Law (Sexual Offences Act) 2017). However, the CIRG members campaigned for

122  Johnson, Hopkins and Minogue a disability-neutral law that focused on consent and didn’t differentiate between able and disabled people in its application. Yet the law still refers to a group of ‘vulnerable persons’ for whom special provision needs to be made. The advocacy for full recognition of dignity and rights continues. CIRG advocates have continued to promote the needs of people with disability to have their relationships recognized and supports provided for people to have relationships. They discovered a format called ‘Dates and Mates’ while promoting inclusive research at a Scottish Consortium of Learning Disability conference in Perth, Scotland, in 2011. Dates and Mates has a speed-dating format, but with the possibility that prospective partners might equally be potential friends. Couching the formula in this way, they report, takes some of the pressure off having to present yourself as a prospective boyfriend or girlfriend at each rotation – a date or a mate. CIRG members have staged several of these events since 2014, including people supported by neighbouring services as well as their own. A further action the CIRG members involved themselves in concerned the ratification of the Convention on the Rights of Persons with Disabilities. Ireland was the last of the member states of the European Union to ratify the convention. Through their campaigning work under the umbrella of the IRN, CIRG members had been pressing long and hard for this ratification to take place. When it eventually came, the government inserted caveats to fully ratifying which had not been anticipated by the campaigners. Clare research advocates stuck to the task, however, examining the reservations and clarifications, seeking advice from Dr Eilionor Flynne at the National University of Ireland Galway (NUIG), and coauthoring an accessible easy-read version of their position to encourage interested parties to keep up the pressure on the government to fully comply (IRN 2018b). From national to international Researchers have also taken great encouragement from seeing the spreading influence of inclusive research through their direct participation. The National Inclusive Research Network has been instrumental in promoting and inspiring the establishment of other networks in Europe. The Finnish Inclusive Research Network was launched in May 2010 and cited the Irish group and its use of drama as an important influence. The Scottish Learning Disability Research Network also noted the influence of the Irish network in propagating inclusive research methodology at its national conference in Perth in 2011, where research representatives from Clare and Galway gave a presentation on their history and development.

To what extent has inclusive research in Ireland reflected the principles of inclusive research? The inclusive research undertaken in Ireland, whether at a local or national level, has always been directed at achieving positive change in the lives of people with intellectual disabilities. This has been largely due to the identification of research issues by people with intellectual disabilities themselves. Sometimes, as in the case of sexuality, people became informed for the first time about a discriminatory

Research, advocacy and activism  123 law and wanted to take action on it. At other times they identified topics which were of local concern and they used their research to campaign directly for change. The inclusive research undertaken in Ireland directly used the experiences of people involved in it to inform the research process and its outcomes. It led to a higher profile for people involved in the research in terms of media and government attention to their concerns. The skills of self advocates and their commitment to change led to the public and the government becoming more informed about their concerns. Of course, their campaigns were not always immediately or even eventually fully achieved. However, both individuals and groups became recognized as legitimate sources of information within the public sphere. Also integral to the outcomes was the emerging leadership of individuals who took up positions in the first independent national self-advocacy organization (National Platform of Self Advocates) and in the national Inclusive Research Network. For example, Joe McGrath, a founding member of CIRG, became first chair of both the Irish Inclusive Research Network and the National Platform of Self Advocates. Members of the IRN and CIRG have presented their work nationally and internationally and became increasingly heard by the public, by policymakers and by politicians on issues of concern to them. In these developments, the presence of allies and supporters was important. The support given by the Brothers of Charity in County Clare provided resources and support for the individuals to work as inclusive researchers, although much of this work by people with intellectual disabilities remained unpaid. The sponsorship by two Irish universities and the National Federation of Voluntary Bodies has provided resources and ongoing support and skills development. Working collaboratively with other groups with similar concerns led to the achievement of local changes, for example, to accessibility to buildings, public transport and to jointly staged events across support services, such as County Clare’s speed-dating events.

Conclusion Inclusive research is about involving people with intellectual disabilities in doing research that aims to make a difference, to challenge discriminatory practices and to remove barriers that people with intellectual disabilities may experience in their lives. The Irish experience described in this chapter shows how the development of knowledge and power by a group can make or contribute to positive changes at both local and national levels and can support the development of leaders who are able to use their research and knowledge to campaign and to lobby for change. From a small group of researchers ten years ago, people with intellectual disabilities have developed through their commitment and work with allies, organizations that carry out research and activism, and through their leadership they have made a significant contribution to positive social change at a local and national level. They have influenced their own support services to create opportunities for personal relationships, challenged issues of accessibility for other people with disability in their local communities, and by becoming more aware of their own rights have nationally prompted legislators to bring national laws more in line with the international Convention on the Rights of Persons with Disabilities.

124  Johnson, Hopkins and Minogue

References Abell, S., Ashmore, J., Beart, S., Brownley, P., Butcher, A., Clarke, Z., Combes, H., Francis, E., Hayes, S., Hemmingham, I., Hicks, K., Ibraham, A., Kenyon, E., Lee, D., McClimens, A., Collins, M., Newton, J. and Wilson, D., 2007. Including everyone in research: the Burton Street research group. British Journal of Learning Disabilities, 35, 121–124. Boal, A., 1979. The theatre of the oppressed. New York, NY: Urizen Books. Chapman, R., 2014. An exploration of the self advocacy support role through collaborative research: there should never be a them and us. Journal of Applied Research in Intellectual Disabilities, 27, 44–53. Clare Inclusive Research Group (CIRG), 2008. Home of my own. Clare Inclusive Research Group/Galway Film Centre. CIRG, 2009. Yearly review. Ennis, TX: Brothers of Charity. Clement, T. and Bigby, C., 2010. Group homes for people with intellectual disabilities: encouraging involvement and participation. London: Jessica Kingsley. Criminal Law (Sexual Offences) Act, 1993. Dublin: Oireachtas. Criminal Law (Sexual Offences) Act, 2017. Dublin: Oireachtas. Department of Health, 2009. Valuing people now: a new three-year strategy for learning disabilities. London: HM Government. Department of Justice and Equality, 2017. National disability inclusion strategy 2017– 2021. Dublin: Department of Justice and Equality. European Commission, 2010. European disability strategy 2010–2020: a renewed commitment to a barrier-free Europe. Brussels: European Commission. Frawley, P. and Bigby, C., 2015. Reflections on being a first generation self-advocate: belonging, connections and doing things that matter. Journal of Intellectual and Developmental Disability, 40 (3), 254–264. Garcia-Iriarte, E., O’Brien, P., McConkey, R. & co-researchers, 2009. All we want to say report of national survey. Dublin: National Institute for Intellectual Disability. Hogan, B., Minogue, G., Hartney, J., McGrath, J., Johnson, K., Luque, P. and Collins, R., 2008. Brian and Joe’s coffee shop. Scariff, County Clare. Ennis, TX: Brothers of Charity. Inclusive Research Network (IRN), 2009. Where we live: a national study done by members of the Inclusive Research Network through surveys. Dublin: National Federation of Voluntary Bodies and National Institute for Intellectual Disability, Trinity College. Inclusive Research Network (IRN), 2010. Relationships and supports study: people with intellectual disabilities in Ireland. Dublin and Galway: National Institute for Intellectual Disability Ireland and National Federation for Voluntary Bodies. Inclusive Research Network (IRN), 2015. Our homes: home and independence project. Dublin, Limerick and Galway: School of Social Work and Social Policy, Trinity College; Department of Clinical Therapies, University of Limerick; National Federation of Voluntary Bodies. Inclusive Research Network (IRN), 2018a. How we work: the Inclusive Research Network’s way of doing projects. Dublin, Limerick and Galway: School of Social Work and Social Policy, Trinity College; Department of Clinical Therapies, University of Limerick; National Federation of Voluntary Bodies. Inclusive Research Network (IRN), 2018b. The issue: Ireland has not fully agreed the United Nations Convention on the Rights of Persons with Disabilities (Convention). Dublin, Limerick and Galway: School of Social Work and Social Policy, Trinity

Research, advocacy and activism  125 College; Department of Clinical Therapies, University of Limerick; National Federation of Voluntary Bodies. Johnson, K., Minogue, G. and Hopkins, R., 2014. Inclusive research: making a difference in policy and legislation. Journal of Applied Research in Intellectual Disabilities, 27, 76–84. Johnson, K., Strong, R., Hillier, L. and Pitts, M., 2002. Screened out: women with disabilities and cervical screening. Melbourne: The Cancer Council. Law Reform Commission, 2011. Consultation paper on sexual offences and capacity to consent. Dublin: Law Reform Commission. McGrath, J., Johnson, K. and Hopkins, R., 2017. Belonging in country Ireland? ‘For me it comes down to work.’ In: K. Soldatic and K. Johnson, eds. Disability and rurality: identity, gender and belonging. Abingdon: Routledge, pp. 159–167. Minogue, G., Rynne, J., Johnson, K., Cooney, L., Luque, P. and Kearney, P., 2008. The garden story. Ennis, TX: Brothers of Charity. The National Disability Insurance Scheme Act, 2013. Canberra: Australian Government offices. Nind, M., 2014. What is inclusive research? London: Bloomsbury. Nind, M. and Vinha, H., 2012. Doing research inclusively, doing research well? Report of the study: quality and capacity in inclusive research with people with learning disabilities. University of Southampton. Available from: http://www.southampton. ac.uk/education/research/projects/quality_and_capacity_in_inclusive_research_with_ learning_disabilities.page [Accessed 1 April 2019]. Nind, M. and Vinha, H., 2014. Doing research inclusively: bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities, 42 (2), 102–109. Riches, T., O’Brien, P. and the CDS Inclusive Research Network, 2017. Togetherness, teamwork and challenges: building an inclusive research network. British Journal of Learning Disabilities, 45 (4), 274–281. Schechter, J. (ed.), 2003. Popular theatre: a sourcebook. Abingdon: Routledge. Strnadová, I. and Walmsley, J., 2017. Peer-reviewed articles on inclusive research: do co-researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities, 31(1), 132–141. Townson, L., Macauley, S., Harkness, E., Chapman, R., Docherty, A., Dias, J., …, and McNulty, N., 2004. We are all in the same boat: doing ‘people-led research’. British Journal of Learning Disabilities, 32 (2), 72–76. United Nations, 2006. Convention on the rights of persons with disabilities. New York: UN. Available from: www.fedvol.ie/_fileupload/Next%20Steps/EasyReadUNConvention. pdf [Accessed 1 April 2019]. Walmsley, J. and The Central England People First History Project Team, 2014. Telling the history of self-advocacy: a challenge for inclusive research. Journal of Applied Research in Intellectual Disabilities, 27 (1), 34–43. Walmsley, J. and Johnson, K., 2003. Inclusive research with people with learning disabilities: past, present and futures. London: Jessica Kingsley Publishers. Walmsley, J., Strnadová, I. and Johnson, K., 2017. The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31 (5), 751–759. Williams, V., Simons, K. and the Swindon People First Research Team, 2005. More researching together: the role of nondisabled researchers in working with People First members. British Journal of Learning Disabilities, 33, 6–14.

9

Peer education A platform for sexuality rights advocacy for women with intellectual disabilities Patsie Frawley and Amie O’Shea

Introduction The World Report on Disability reports that nearly one in five women live with disabilities (World Health Organization 2011), yet, as UN Women note, ‘women and girls with disabilities remain at the margins of decision making … [with] their needs being largely invisible … both to advocates of women’s rights and disability rights’ (UN Women 2016). Feminist disability studies continue to work to address this marginalization through scholarly work and by informing advocacy. Rosemary Garland-Thompson notes, feminist disability studies is more than research scholarship about women with disabilities … It seeks to challenge our assumptions about living with a disability. It situates the disability experience in the context of rights and exclusions. It aspires to retrieve dismissed voices and misrepresented experiences (Garland-Thomson 2005, p. 1557) Informed by feminist principles, we observe the continuing marginalization of women and girls with disabilities and prioritize the lived experience and truths held by women with intellectual disability. This is the framework used to inform our work and the approach held in this chapter. Systemic advocacy by women with disabilities aims to use the collective story of oppression experienced by women with disabilities to inform approaches that can work on the macro level of political and social change to address gendered and ableist systems. This is important work which produces valuable results: UN Women, for example, have used their platform to strengthen political and economic participation of women with disabilities to address gendered disability inequity and violence (UN Women 2016). The collective story used in disability advocacy is informed by research and lived experience. We note that the latter, though, depends on the opportunity women have to tell their own stories. While women with an intellectual disability are increasingly having their voices heard, in particular through inclusive research work (see, for example, O’Shea 2016, Strnadová et al. 2015, Traustadóttir and Johnson 2000), often it is still others like families and service providers that are speaking on their behalf, especially

Peer education  127 in research about sexuality (see, for example, Pebdani 2016, Ditchman et al. 2017, Tamas et al. 2019), leaving women’s voices and stories still absent from the political arenas of disability advocacy and representation. Hollomotz (2011), in her work with people with an intellectual disability who have experienced sexual violence, notes that those people who chose to talk to her about their experiences were largely outside the political disability context and so, therefore, were their stories. This raises the question about initiatives occurring on the ground that can be mobilized to reach out to women with intellectual disabilities to provide a platform for them to have their voices heard within women’s advocacy and to support advocacy by women with disability, in particular. This is what we attempt to address in this chapter. We describe how women with an intellectual disability in Australia are finding and using their voices in a peer education programme about sexuality rights called Sexual Lives & Respectful Relationships (SL&RR), and extending their voices into the public domain as advocates about issues connected to their peer educator role. We draw on the public voices of two women who are SL&RR peer educators. Reflecting on their experiences (with their permission), we discuss the link between being a peer educator and advocacy about sexuality rights and other issues related to their experience. This chapter shows the need to look for advocacy and activism in different places and different forms, in particular by women with intellectual disability who are often isolated from politically formed and structured advocacy. We have worked with Emily and Linda as peer educators for 10 years, and Shea for five. Emily and Shea have succeeded in having a voice in the public domain about issues they care about that relate to sexuality rights. Their practice can be viewed as the ‘sexual self advocacy’ described by participants with intellectual disability in recent research (Friedman et al. 2014), which involves ‘speaking up’ for oneself and speaking to others about sexuality rights. This theme has also been reported in research about the experiences of peer educators in the SL&RR programme (Frawley and Bigby 2015), where peer educators reflected that their role enabled them to help themselves in their own relationships, help others know about their rights and to claim their right to be sexual. The work that we report in this chapter has been shaped by research that has aimed to include the voices, experiences and expertise of women with intellectual disabilities. Emily and Shea, whose public accounts of advocacy are reported here, have not had the same opportunities as many of the disability activists and scholars we would normally draw on in academic writing. Their centrality to this chapter recognizes their aims to be heard about issues that matter to them as women with intellectual disabilities and as sexual self advocates.

Background As Michelle McCarthy notes in the introduction to her seminal work on sexuality and women with intellectual disabilities, the fact that women with disabilities are ‘women too’ has not always been at the forefront of disability

128  Patsie Frawley and Amie O’Shea researchers’ minds (1999, p. 11). Further, while self advocacy has been an important collective and grassroots voice for the issues of people with an intellectual disability for more than three decades, there continues to be a lack of focus in their work on gender and/or sexuality. While women’s issues have been less present within the self-advocacy agenda in Australia, women with intellectual disabilities have been very present in the self-advocacy movement and for many this is where they ‘found their voices’ and have continued to have their say (Frawley et al. 2013). Being a ‘woman with an intellectual disability’ and being seen as a woman who shares similar experiences with other women – menstrual pain, the need for preventative women’s health screening, experiences of gender-based violence, reproductive decisions and menopause, to name a few – has not always been achievable. Writers like Michelle McCarthy have explored many of these issues over the last two decades and conclude that more needs to be done to see the intersection of gender and intellectual disability (McCarthy 2014). Asking as we do in this chapter how women with intellectual disability can claim this gendered perspective about their lives, and add their voices to the scholarly and advocacy debates that inform feminist disability studies and women with disabilities advocacy, can be answered to some extent by looking at how leading women with intellectual disability advocates have done this. We reflect here on the work of a leading Australian self advocate, Janice Slattery. Janice’s life spans this history and has reached into work on women’s health in the peer education programmes Paps I Should (Farnan and Gray 1994) and Breast for Me (M. O’Shea 1997), two groundbreaking women’s health programmes run through women’s health services in Australia in the late 1990s. Janice continued to promote women’s issues through co-research and project work on the Living Safer Sexual Lives programme and the peer-led Sexual Lives & Respectful Relationships programme. Her story is told elsewhere (Slattery and Johnson 2000); however, it is important to reflect on what it has taken for Janice, a prominent self advocate in Australia, to be linked to and integrally involved in a research and advocacy career in women’s disability advocacy. While broader women with disabilities advocacy has engaged at the systemic level over this time, individuals like Janice have carved out a space for the voices, experience and expertise of women with an intellectual disability in a much more grassroots way. Much of this has been made possible through relationships with academics and practitioners who have made collaborations with women like Janice to ensure they are present and participating in this work. Women with an intellectual disability are still struggling to be seen as ‘women’, as McCarthy suggests, and through their collaborative work as co-researchers and peer educators can claim their place within the broader women with disabilities advocacy arena and feminist disability scholarship. When researching the history of self advocacy in Australia, only one example of self advocates engaging with women’s issues was located. This was at a conference on sterilization of women with intellectual disabilities

Peer education  129 (STAR  1990). While women’s disability advocacy organizations and feminist disability studies have engaged extensively with this issue, and developed important work that has informed both systemic advocacy and theoretical understandings of embodiment, gender and disability (for example, Hall 2015, Women With Disabilities Australia 2012), the self-advocacy movement itself has not been a strong platform for issues impacting the lives of women with intellectual disabilities. This chapter is structured around iterations of the research project Living Safer Sexual Lives. This project began in the late 1990s in Australia and now spans almost two decades (Frawley et al. 2003, Frawley et al. 2010, Frawley et al. 2017, Johnson et al. 2000). This body of work aimed to reshape research about sexuality and intellectual disability. It began with the central idea that the stories told by people with an intellectual disability could shift the way their sexuality was understood and responded to. Accordingly, Living Safer Sexual Lives began as an action-based qualitative research project about sexuality and intellectual disability that used life-story approaches with 25 people with an intellectual disability to hear their lived experiences of sexuality and relationships (Johnson et al. 2000). The research sought to combine a focus on sexuality and relationship rights with more inclusive and person-led approaches to research with people with an intellectual disability. This work prioritized the voices of people with an intellectual disability through co-developing their life stories and through their collaboration in the research design and research processes, including translation of the research to practice (Johnson et al. 2002). After the co-development of the stories, the researchers remained committed to translation and extension of this work. This resulted in the development of a training programme that was delivered in disability services to groups comprising people with an intellectual disability, staff and families. While the programme was delivered to each group separately, the stories and learning approaches were consistent, and the training was developed and delivered by a member of the research team, ensuring a close connection with the original work (Frawley et al. 2003). A key recommendation of this phase was the involvement of people with intellectual disability as trainers; however, this aim was not realized until several years later when there was an opportunity to develop a programme using the original stories and research focus to include a sexual violence and abuse focus, Living Safer Sexual Lives: Respectful Relationships (Frawley et al. 2010). At this point, the programme was adapted by a team of people with intellectual disability and academic researchers, and was transformed to a peer education approach. Most recently, the programme has responded to opportunities to collect new and diverse stories and been further refined into its current iteration as Sexual Lives & Respectful Relationships (Frawley et al. 2017). Peer education is at the centre of this work and it is through this role that we met Linda, Emily and Shea and more than 50 other people with intellectual disabilities who are using their experiences and expertise to shape a programme they have called ‘a movement’.

130  Patsie Frawley and Amie O’Shea Peer educators: advocates and activists I’m a peer educator, I’m a trainer, I’m a researcher … I’ve got a daughter … I’ve been in relationships … I’m separated and I’ve moved on … this program helps with that, since I’ve been on the program it’s helped me out … I’ve been training people so they can be like me. (Linda Stokoe, Peer Educator, Sexual Lives & Respectful Relationships) Linda Stokoe was a founding member of the research project that developed the peer education model used in Sexual Lives & Respectful Relationships. What she says in the quote above is that through her work in the programme she has experienced multiple roles and multiple identities. She also has shared the transformative nature of the work she does in the programme personally and has extended it to her peers. While advocacy and, in particular, disability advocacy has been defined and is organized in many ways, at the heart of it is the idea of ‘helping’ and change or transformation. In our view, advocates are people who ‘stand beside’ others who they share some identity or experience with and for whom some change or transformation is needed or wanted, individually and collectively.

Figure 9.1 Linda Stokoe.

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Peer education There’s no better way to get a message across from someone that you can relate to. And that’s just putting it bluntly. If you can relate to someone, you’re gonna listen to them. (Frawley et al. 2012, p. 58) Traditional approaches to sexuality education assume the ‘learner’ is not knowledgeable or skilled sexually. It is characterized by a particular mix of morality and normality, in which non-reproductive, heteronormative expressions are brought forth to represent what Thompson (2001) called the ‘least bad sex’ (Gill 2015). Critics of this traditional stand suggest the didactic rules-based approaches that reflect this viewpoint are not effective and approaches that are more ‘real world’ and that acknowledge the learner as more agentic are needed (Frawley and Wilson 2016). Peer education has been used in health promotion work since the 1990s and, while it was critiqued by Turner and Shepherd (1999) as a ‘method in search of a theory’, suggesting it is about practice rather than praxis and straddles a number of paradigms, it has continued to be used in health education in schools with positive effects (Mahat et al. 2008, Mellanby et al. 2000). While peer education has not been used widely with people with an intellectual disability, research on its use in SL&RR suggests that it is effective and has positive outcomes, in particular for breaking down barriers to access to information (Frawley et al. 2012, Frawley and Anderson 2014, cohealth 2016, 2018, McVilly and Marks 2018). Justification for peer education through SL&RR that focuses on sexuality and relationship rights for people with an intellectual disability is threefold: (1) philosophically it reflects the ‘Nothing about us without us’ self-advocacy dictum (Charlton 1998); (2) it positions people with an intellectual disability as educational emancipators capable of sharing knowledge that they have gained through lived experience (Freire 2007 [1970], Rancière 1991); and (3) it acts as a platform for sexual self advocacy about the sexual rights of people with intellectual disability, as evidenced by the reflections of peer educators reported in this chapter and in earlier research (Frawley and Bigby 2014). Linda, Emily and Shea, like the other people with intellectual disabilities who have completed the training to be a peer educator in SL&RR, heard about and were connected to the opportunity to be a peer educator through a range of avenues. For Linda it was through involvement in a research project where she was a research participant, for Emily it was through her self-advocacy network in a regional part of Victoria, and for Shea it was because she was known by a local government worker through her involvement in the arts and disability sectors in her local area. For most of the peer educators, the engagement with sexuality rights has come through the programme; however, for many their interest in the programme and skills they use as peer educators have been augmented by their broader interest in rights, including through their self-advocacy roles, leadership roles or connections they have made to rights-related activism in the community. While the basis for people’s interest in becoming a peer educator is not something

132  Patsie Frawley and Amie O’Shea we track in terms of peer educator activity or outcomes, research and evaluation of the programme strongly indicates that peer educators do see themselves as sexuality rights advocates within and outside the programme (Frawley et al. 2012, cohealth 2016, 2018, Frawley and Bigby 2010, 2014). Training to become a peer educator is focused on developing the skills and knowledge of the programme that will enable competent delivery of the programme. Once people are introduced to the programme and what being a peer educator means they can choose to go ahead with the formal training. As we noted, the people who ‘put their hand up’ to become peer educators have come through many different avenues to this work and it is assumed that they will ‘vote with their feet’ in terms of ongoing commitment. There are no formal criteria people have to meet to ‘be a peer educator’ apart from completing the four-day training and having a commitment to running the programme and being part of their local network. Local networks of peer educators and programme partners are formed after the training and these groups organize and run the programme in their local areas for people with an intellectual disability. The programme partners are people who work in sexual assault, women’s health, community development and disability advocacy roles in local areas; these groups are called SL&RR local networks. At the time of writing there were seven local networks across Australia. These networks are supported to maintain their relationships and run the programme by the SL&RR research team at Deakin University, led by the authors. In developing, piloting and now implementing this model for almost ten years, there have been many queries and questions about ‘what it takes’ to be a peer educator in this programme, and some concerns held about the ‘capacity’ of people with an intellectual disability to do this work given the likely issue of disclosure of abuse and complexity of the topic (Frawley and Bigby 2014). Research about peer education in the programme has found, though, that peer educators are competent and that the most important outcome is that they are role models for programme participants (Frawley and Bigby 2014). Through watching and engaging with peer educators, people are demonstrating what Friedman et al. (2014) refer to as ‘sexual self-advocacy skills’. This research has also found that what is perhaps different with peer education is that the peer educators are recognized as being credible sources of information for their peers through their expertise by experience. In addition, this research indicates that peer educators are both developing skills for themselves and that the role enables them to fulfil their desire to help others (Frawley and Bigby 2014). There is no exhaustive list of criteria for what it takes to be a successful peer educator in this programme but our ongoing research tells us that little apart from the knowledge of the programme has to be taught to peer educators. The training to become a peer educator is facilitated by an experienced peer educator and co-facilitated with the academic researchers who co-developed the programme. The training focuses on development of a deep knowledge of the stories, awareness about violence and abuse prevention, and awareness of the rights framework that underpins the programme drawn from Ann Craft’s (1994) work on the sexuality rights of people with intellectual disability. While the

Peer education  133 Convention on the Rights of Persons with Disabilities has codified the right to form a family, rights for women with disabilities and refers to the right to sexual health education, the rights developed by Ann Craft resonated more strongly with the group that developed the programme, possibly because they had been developed in relation to the lives of people with an intellectual disability. The programme has summarized these rights as: the right to be sexual, the right to be treated like an adult, the right to privacy, the right to make your own decisions about relationships, the right to be safe from violence, the right to have information about sexual health, sex and relationships, and the right to all of this without other people stopping you. A thematic approach informed the design of the programme into four sessions: talking about relationships and sexuality; having rights and being safe; respectful relationships; and sexual identity (Frawley et al. 2016, A. O’Shea et al. 2018). The themes covered and the rights explored through each story engage peer educators in discussions with their peers about personal experiences of rights violations and link to broader rights issues. Questions of reproductive rights, gender-based violence, disability service user rights, and sexuality and gender identities are addressed in the discussions which come from the stories. Peer educators draw on their lived experience and a thorough knowledge of the core set of stories and the themes developed from these called ‘key messages’, to facilitate participant discussions. The peer educators, programme partners and project staff claim unashamedly that the programme does not, in fact, teach anything. Using an adult learning framework and drawing on critical pedagogical theory, it aims to create a space where people who have not traditionally been seen as capable learners can engage in development of their own learning in a way that meets their aims and where that learning is liberating (Freire 2007 [1970]). The quote from Linda Stokoe reflects the linking of personal experiences to advocacy through peer education with and for her peers. Women with an intellectual disability, as the research referred to earlier in this chapter notes, have struggled to be heard or have their experiences acknowledged, respected and legitimized through other approaches to sexuality education. Often, in other research, it has been ‘about’ them, not by or with them (Traustadóttir and Johnson 2000). The peer education model in our work has become an avenue for the expression of solidarity between people with intellectual disabilities about sexuality and sexual rights. It has also been a platform for their voices and experiences to be heard beyond the programme, in particular through conference presentations, representation on research advisory groups in other related research about access to domestic and family violence services, and through their own public advocacy, as evidenced in the following section that presents the work of Emily and Shea.

The personal is political: peer educators and spokespeople When the invitation came to write this chapter, we asked Emily and Shea if they would like to contribute because they had public accounts that referred to their

134  Patsie Frawley and Amie O’Shea peer education work but also went beyond this. Linda also contributed, reflecting on her decade of experience in the programme. While we focus on Emily and Shea, we also need to give some space to others whose accounts are not shared here as a way of linking peer education work to the broader work outlined by Emily and Shea. In this chapter, we do not have the space to explore and fully reflect on whether peer education has been experienced as advocacy or activism by the people with intellectual disability who work in this role in the SL&RR programme, nor can we present the full life stories of all peer educators which are full of small and some big advocacy and activism experiences. Instead, we draw here briefly on the work of peer educators as presented at the annual SL&RR conference. This conference brings peer educators together with the programme partners they work with in their local networks so they can share their work across the seven networks, learn from each other, celebrate each other’s successes and reflect on the challenges of the role. A snapshot from the presentations by peer educators at these conference in 2017 and 2018 highlight challenging issues, proud moments and key reflections, including: •• •• •• •• ••

[Being a peer educator is] challenging because my rights are not always heard in the rest of my life. Being Aboriginal I can see some things the same in my life and this programme. I like to talk and I like to listen. I am proud of meeting new people and hearing their experiences. Sexual assault is never OK.

The following section draws in more detail on two sources to present some insights into the advocacy and activism of two peer educators who have taken their advocacy outside the SL&RR peer education programme into the public domain. Emily Ardley: ‘We should feel safe to be ourselves’ Introducing Emily is not an easy task. Emily has many strings to her bow. She is an actor, a hairdressing assistant, owner of a pet dog Angel, a committed daughter, sister and aunty, and a proud rural town resident. When she is not working in the SL&RR peer education role she is doing any of these other things and of course hanging out with her many friends. The following piece is from a public health promotion campaign called Make the Link, which was about increasing understanding of gender-based violence, led by Gippsland Women’s Health in regional Victoria, Australia. Everyone has the right to be who they want to be. A lot of people don’t respect each other just because they’re different. I’m really passionate about equality and I try to help others through a program. I help run a program called Sexual Lives and Respectful Relationships (SL&RR) for women and men.

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Figure 9.2 Emily Ardley.

This program started out in Gippsland and I just got back from presenting at a conference on the program in Hawaii. We’ve come a long way. I work with people who have disabilities, inequality is a big problem for us. A lot of people trust me in the program and tell me stories of what they’ve experienced, it’s been hard for them. Sometimes I think people treat people with a disability like little kids, but we’re our own people. A lot of people with disabilities experience sexual assault or violence in relationships. Everyone can help by talking more openly about this issue and connecting people with the right services. It makes me feel sick to think of the number of people with a disability who experience violence from people who are supposed to care for them and help keep them safe. This is especially important for women who already experience gender inequality and then are also living with a disability. I started working with the SL&RR program in Morwell and I was asked to be one of the first peer facilitators. We talk about same sex relationships, being safe in relationships and how people with a disability can speak up for themselves. I’m still working out who I am but the program helps us figure that out and to communicate that. I’m so passionate about gender equality, and equality for everyone. No matter who people are, they should feel safe and happy to be themselves. Source: Gippsland Women’s Health 2017

136  Patsie Frawley and Amie O’Shea Shea MacDonough: ‘I believe that gay people should be allowed to get married’ Branching out as a public speaker has been a goal for Shea and fits well with her acting and dancing where she loves being on stage. When Shea joined SL&RR she had a goal to become more confident. While we don’t know if she was ever exactly shy, Shea is now a self-professed public-speaking junky and, apart from her role which she talks about in the box, she has now presented at several conferences through her work in SL&RR, the latest at a conference about the first anniversary of the marriage equality vote in Australia (MacDonough and Frawley 2018, A. O’Shea and MacDonough 2018). Shea may not have found her voice through SL&RR but she has continued to use it widely to talk about her rights as a woman with Down syndrome. My name is Shea MacDonough and I am 31 years old. I have Down syndrome and am an advocate for adults with Down syndrome. I talk to groups of people about disabilities, inclusiveness and discrimination.

Figure 9.3 Shea MacDonough.

Peer education  137 When I turned 18, I went onto the electoral roll. This allowed me to vote. Then a few years later, I had myself taken off the roll because I thought I didn’t understand the voting system well enough. After this, I became very interested in current events and standing up for the rights of people with a disability. I wanted to have my say by voting. So, I asked to go back on the electoral roll. I really wanted to do this so that I could have my say regarding same sex marriage. I believe that gay couples should be allowed to get married. At first, the electoral roll office did not let me back on the roll. I was very angry. I got a letter from my doctor and sent it to them. Finally, I could go back on the electoral roll. But it was too late for me to be included in the same sex marriage survey. I was very unhappy about this. But now I can vote and have my say in future elections. Like the 2018 Victorian State Election. People like us, with disabilities, have a right to speak our own thoughts. I understand how voting works and why it is important. I have the right to vote just like everyone else. Voting is your chance to have a say and to make your voice heard. Being able to vote is your basic human right. Voting is your way to choose who will make important decisions that affect you. This is the time to learn about the political candidates you can vote for. Find out what they are promising and what they think is important. They can make changes that will either make your life better or worse. It’s your rights, it’s your life!

Source: Inclusion Melbourne 2018

Journeys to advocacy and activism through SL&RR Emily and Shea were founding members of their respective local SL&RR networks in regional and metropolitan Victoria, Australia. Both women expressed an interest in speaking up about rights as part of their involvement in SL&RR and both have taken their voices outside the SL&RR programme to speak up about rights that matter to them. At a recent conference where Shea presented her story about voting in the Australian marriage equality survey with the first author, she told the audience that her interest in this issue related to her advocacy about relationship rights, articulated through her role as a peer educator. She shared with the group how through SL&RR she had used her acting skills to be an actor in a film made up of one of the stories for use in the programme. Shea is now a democracy ambassador for the Victorian Electoral Commission. While there is no way of knowing if this would have occurred if she was not a peer educator in SL&RR, it was through this role that she has been supported to take her advocacy further by speaking at conferences about her support for equal marriage rights. Participants at the conference in turn learned about the experiences of many people with intellectual disability who are not on the Australian electoral roll and were therefore denied their opportunity to participate in the postal survey about same-sex marriage. On the journey home, the first author reflected with Shea on how being a

138  Patsie Frawley and Amie O’Shea peer educator had been a platform for exploration and extension of her interests in equality more broadly, and how this had benefited others in intersecting areas of social justice. Emily’s account is also linked to her work with SL&RR. It was published through a regional women’s health initiative which aimed to raise awareness of the gendered nature of violence and abuse. Her story featured alongside those of local police officers, athletes and community members who reflected on their experiences of gender discrimination, violence and abuse. Emily’s message that people should ‘feel safe and happy to be themselves’ speaks volumes when considering the multiple oppressions people with intellectual disabilities have experienced, some of which she raises: being treated like a child, sexual abuse and experiencing violence, often at the hands of people who are supposed to care for you. Emily speaks from a collective position, replicating the approach taken in her practice as a peer educator. Importantly, Emily says that while in some ways she is still working out who she is, she strongly identifies as a peer educator, grounded by her connection with other people with intellectual disability who are also engaged in sexual self advocacy.

Conclusion We have presented these accounts here to share our reflection that for many people, and in particular women with an intellectual disability, having their voices heard alongside others about things that matter to them – equality, sexual rights, the right to be safe and be respected, the right to be a citizen and a sexual citizen – is rarely straightforward. It can, however, be aided by a platform such as peer education, a practice which individuals can relate to outside of the formal self advocacy or systemic advocacy structures in which women with intellectual disabilities and their stories have struggled to be heard. We began the chapter by reflecting on the marginalization and the common absence of women with intellectual disabilities in scholarly and political activist and advocate spaces. Drawing on Arendt, Stacy Clifford Simplican suggests that when considering political activism we may need to think more relationally rather than from an identity perspective and look at ‘the “space in between” us and the ways in which action invites a relationship between people’ (Clifford Simplican 2015, p. 116). We propose that the journey between peer education and advocacy or activism can be read through this relational lens, and invite readers to consider what they can do to create space. When spaces are not inclusive, or available to only one group, how can other spaces be found or created? In this chapter, we set out to tell a complex story: that women with intellectual disabilities have connected with and used peer education in a sexuality programme as a space that they can claim as their own, a space ‘in between’ their personal experiences and their intellectual disability identities, where they can relate equally and actively about sexuality rights to broader rights. In this space they operate as advocates and activists within and beyond their role as sexual self advocates, alongside allies that value and support their focused role as peer educators and broader roles as spokespeople for equality.

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Acknowledgements We acknowledge Emily Ardley, Shea MacDonough, Linda Stokoe, Janice Slattery and all the women with an intellectual disability we have worked alongside. Thank you also to Monica Wellington who assisted with finalizing references and other details.

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Peer education  141 Mellanby, A.R., Rees, J.B., and Tripp, J.H., 2000. Peer-led and adult-led school health education: a critical review of available comparative research. Health Education Research, 15 (5), 533–545. O’Shea, A., 2016. Meanings of gender and disability in the stories of young women with intellectual disability. Journal of Intellectual Disability Research, 60 (7–8), 717. O’Shea, A. and MacDonough, S., 2018. Panel discussion: LGBTIQ and disability. Presented at Better Together, Melbourne, Australia. O’Shea, A., Stokoe, L., Wellington, M., and Frawley, P., 2018. Sexual Lives & Respectful Relationships: brain injury. Geelong: Deakin University. O’Shea, M., 1997. Breast for me: a developmental health education strategy for women with a disability. Australian Journal of Primary Health, 3 (1), 66–71. Pebdani, R.N., 2016. Attitudes of group home employees towards the sexuality of individuals with intellectual disabilities. Sexuality and Disability, 34 (3), 329–339. Rancière, J., 1991. The ignorant schoolmaster, vol. 1. Stanford, CA: Stanford University Press. Slattery, J. and Johnson, K., 2000. Family, marriage, friends and work: this is my life. In: R. Traustadadottir and K. Johnson, eds. Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley Publishers, pp. 90–105. STAR, 1990. On the record – a report on the 1990 STAR Conference on Sterilisation: ‘My body, my mind, my choice’. Available from: http://wwda.org.au/issues/sterilise/ sterilise1995/record/ [accessed 11 February 2019]. Strnadová, I., Cumming, T.M., Knox, M., Parmenter, T.R., and Lee, H.M., 2015. Perspectives on life, wellbeing, and ageing by older women with intellectual disability. Journal of Intellectual & Developmental Disability, 40 (3), 275–285. Tamas, D., Brkic Jovanovic, N., Rajic, M., Bugarski Ignjatovic, V., and Peric Prkosovacki, B., 2019. Professionals, parents and the general public: attitudes towards the sexuality of persons with intellectual disability. Sexuality and Disability Thompson, D., 2001. Is sex a good thing for men with learning disabilities? Tizard Learning Disability Review, 6 (1), 4–12. Traustadóttir, R. and Johnson, K., 2000. Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley. Turner, G. and Shepherd, J., 1999. A method in search of a theory: peer education and health promotion. Health Education Research, 14 (2), 235–247. UN Women, 2016. Women and girls with disabilities must not be left behind. Available from: http://www.unwomen.org/en/news/stories/2016/6/women-and-girls-with-disabilitiesmust-not-be-left-behind [accessed 27 August 2018]. Women With Disabilities Australia, 2012. Senate inquiry into involuntary and coerced sterilisation of people with disabilities in Australia. Available from: http://www.wwda. org.au/senateinquiry2012.htm [accessed 28 August 2013]. World Health Organization, 2011. World report on disability. Geneva: WHO and World Bank.

Part III

Activism across multiple identities

10 Our lives, our story The journey of the voiceless towards advocacy in Nepal Pratima Gurung

Introduction I am an indigenous person with disabilities from the developing country Nepal. Very often I question myself, ‘Where do I locate myself, my identity and my space?’ I do this because most often I find myself nowhere: neither in disability nor in indigenous discussions, organizations or movements. And so I ask, ‘Is the indigenous person with disability issue a human rights issue? How can I claim my space and my voice? And from which location?’ These are the questions that most indigenous people with disabilities in Nepal have grappled with in their daily lives. The challenges which they face on a regular basis are shaped and interconnected with their ‘indigenous person with disabilities’ identity and they have recognized the large gap between themselves and the non-indigenous population. Indigenous people with disabilities have begun to raise awareness about their challenges. Having an unheard voice, seeking space to be heard in both disability and indigenous movements, indigenous people with disabilities start their journey of awareness to advocacy, aiming to gain a collective strength in order to claim their rights. The journey for indigenous disability, intersectional rights and advocacy in Nepal began formally in 2009 with an organization established by Nepalese indigenous disabled activists. Both indigenous people and people with disabilities have marginalized status in Nepal. There is a long history of more than 240 years of indigenous people’s struggle against state oppression, subjugation, exclusion and discrimination. The institutionalized dominant Hindu religion and hierarchical caste system are still prevalent in Nepal and have the direct impact of marginalizing, subjugating and internally colonizing indigenous people in terms of land, territories, language, customary laws and their collective way of life. This process by dominant caste groups who are in a minority population has been reflected in much literature, reports and documents (Lord et al. 2016). When an indigenous person has a disability, the situation is made even more difficult because people with disabilities are treated as secondary citizens and mostly treated with a charity-based approach.

Framing issues and concerns on the ground Indigenous people with disabilities are caught globally between the intersections of disability and indigeneity and face multilayered discrimination, being indigenous first, having a disability second and being indigenous with a disability third.

146  Pratima Gurung All these identities intersect and the forms of discrimination can happen either separately on the basis of one identity or they can be intersectional, occurring in situations where one’s multiple layers of identity inextricably interact, resulting in a uniquely disadvantaged position. Because this kind of discrimination is experienced in people’s everyday lives, they may not even be aware of it. Most indigenous people with disabilities are deprived of basic services like education, health, employment, an adequate standard of living and social services, and most indigenous people with disabilities do not know about their rights and how to claim their rights. For example, they do not know about the process of getting a disability card and face challenges in acquiring identification cards and access to resources (LAHURNIP 2015, p. 45, NIDA et al. 2018). They are thus a marginalized population within a marginalized population that constitutes their complex and unique identity. Of the estimated 54 million indigenous people with disabilities around the world, many are more likely than other people to have a secondary disability, including mental health issues, leading to higher suicide rates (UNPFII 2013). The vast majority live in poverty and experience isolation and exclusion. Their rights and needs are often largely ignored (UNPFII 2013). In Nepal, there are 1.3 million indigenous people with disabilities, having marginalized status within the disability and indigenous movements (NIDA et al. 2018). The disability movement does not acknowledge human diversity in relation to indigenous people’s historical oppression, value and cultural approach, and the indigenous movement knows little about disabled people’s issues, challenges and needs. While programmes designed for people with disabilities and for indigenous people in Nepal aim to be indigenous and disability sensitive with an inclusive approach, their efforts are flawed because they fail to appreciate the diversity and heterogeneity within each group, with 35.80 per cent of indigenous people having a disability and 1.94 per cent of people with disabilities being indigenous (Central Bureau of Statistics 2011). Indigenous peoples and disability groups have their own particular history, language, culture, traditional institutions, customary practices and issues about accessibility, health and education. In Nepal, the discrimination based on functional limitations (types of disability) has gained attention as disability rights has emerged in public policies and the state has put effort into protecting and promoting the rights of people with disabilities since 1982 in a way which is positive and praiseworthy. Yet there still exists a huge gap in implementing these policies and enabling people with disabilities to realize their rights in daily life (Gurung 2016). In this regard, groups facing multiple and intersectional discrimination, such as indigenous people, Dalit, Muslims, the remote, the poor and people with disabilities, fall behind in every realm of life. Their issues, concerns and their representation is very low at all levels. Taking the issues raised in this introduction as a starting point, I will discuss how, since 2009, indigenous people with disabilities in Nepal have continued to advocate against multiple and intersectional discrimination and for the recognition of their identity to ensure their rights in both indigenous and disability discourses. This struggle has been fraught with challenges but has also provided opportunities for learning and further work. This chapter is based on primary information from

Our lives, our story  147 the field and from the national consultation workshop with indigenous people with disabilities and their organizations to prepare the 2017/18 report for the UN Committee on the Rights of Persons with Disabilities. I also analyze secondary sources that have been produced as an outcome of indigenous disability advocacy in Nepal.

NIDA and NIDWAN, recognition and affiliation In Nepal, there are two national organizations, Nepal Indigenous Disabled Association (NIDA) and National Indigenous Disabled Women Association Nepal (NIDWAN), which have sought, each in its own way, to protect and promote the rights and raise awareness of indigenous people with disabilities. The organizations were established in 2009 and 2015, respectively. Both are service oriented and their purpose is to work with the most marginalized and under-represented people to ensure their human rights and strengthen their capacity to live a dignified life in society. Both organizations do this by advocacy, by lobbying service developers and practitioners, and by undertaking and publishing research. They mainly focus on organizing campaigns, consultation, collaboration and sensitization on human rights issues, skill development and training programmes, capacity building, rehabilitation and the provision of support services. They also consider in their work the effects of climate change and disaster. NIDA and NIDWAN engage in cross-movement collaborative approaches to raise awareness of the collective voices of indigenous people with disabilities. Because they work with indigenous people with disabilities, recognition and the right to a dignified life are two priorities for NIDA and NIDWAN and their members. These form a basic framework for claiming rights at all levels. The status of indigenous people with disabilities had not been established by any government or community forum because these institutions and groups were not accustomed to ideas of dual identity. Gaining their acceptance of indigenous people with disabilities as members, or as a group, has been a challenge till now despite having legal documents that ensure their rights. Most often indigenous issues are linked with ‘race’ and ‘communal belonging’ rather than with human rights issues. This view persists and there is an unwillingness by non-indigenous groups to accept indigenous members and their issues/concerns in a rights-based framework. It was in 2009 after NIDA was established that its members started doing advocacy which focused on the interstice of indigenous and disability identity through collective action. Though their collective action was full of challenges, eventually they were able to succeed in gaining membership of the two federation-based organizations, the National Federation of the Disabled Nepal (NFDN) and the National Federation of Indigenous Nationalities (NEFIN). They also gained recognition as well as minimal support in 2011 from the National Foundation for the Development of Indigenous Nationalities (NFDIN), a semi-governmental organization that deals with indigenous people’s development affairs. In addition, NIDA has recently (in 2016) become a regional member of Asia Indigenous Peoples

148  Pratima Gurung Pact (AIPP) and has initiated discussion on disability in an indigenous framework to include in all programmes of AIPP and its member organizations in Asia. Moreover, NIDA has recently (in 2016) been able to have two members in the NFDN to work in an inclusive manner which promotes respect of diversity and to be the voices of indigenous people with disabilities. This membership and recognition are the entry points to make relevant organizations realize that indigenous people with disabilities are part of them. One of the members of NIDA reflected, there have been some efforts from members of NIDA and NIDWAN to hold meetings, and consultations with indigenous people with disabilities. These have drawn attention to our issues and led to some collaborative efforts/ activities to increase the visibility and inclusion of indigenous peoples with disabilities. These actions have opened avenues to collectively raise concerns and undertake activism and to mainstream the opinions of people with disabilities and indigenous groups in Nepal and Asia.1 Yet there are still challenges to acceptance and inclusion of indigenous people with disabilities, hearing their voices and supporting their effective, meaningful participation. Despite the momentum gained by indigenous and disability movements in Nepal, their call for the recognition of the rights of indigenous people with disabilities is not in the public discourse (Gurung and Thapa 2013, Lord et al. 2016). Their rights, recognition and participation are absent from the recent Disability Act 2017, which is claimed to be in line with the Convention on the Rights of Persons with Disabilities (CRPD). The Disability Act 2017 makes no reference to mainstreaming indigenous people, and other under-represented groups, in the disability framework. The CRPD Committee’s Concluding Observation to Nepal in March 2018 made a number of references to indigenous and other marginalized groups, that their rights and effective meaningful participation at all levels be ensured (see IDA 2017a). We have a long way to go before those rights on paper are effectively implemented.

Self-advocacy and collective action The second stage of the development of activism by indigenous people with disabilities in Nepal has been self-advocacy work about their issues. Raising awareness from the ground up and being leaders representing their community is crucial for indigenous people. They are not used to working within state-defined structures, such as public institutions, engaging with different stakeholders, or advocating and lobbying with relevant stakeholders and government. As one of the members of NIDWAN says, It was hard for me and my colleagues when we went for registering our organization and it was more difficult to deal with the procedure and questions the duty bearer demanded from us repeatedly, as we were not acquainted with

Our lives, our story  149 them. We also face a similar experience in our daily activities in doing other government procedures because our issues are most often taken in a different manner and most often we fail and are unsuccessful doing it. It is usually dominant groups who hold power or positions in state mechanisms and are acquainted with the state systems that are active and have access to those groups and resources. In this regard, indigenous people lag behind in advocating, accessing resources effectively and developing relationships with relevant organizations. Moreover, it is difficult to make people understand about the two different issues. Disability is a complex, dynamic, multidimensional and contested issue (WHO and World Bank 2011) and indigenous people’s cultural and political issues and the different contexts in which they live are challenging. Indigenous people with disabilities struggle to integrate their positioning and ‘indigeneity beliefs’ in disability discourse. This is because most disability-led organizations, programmes and resources are controlled by dominant, power-holding groups from non-indigenous communities who have shaped the mindset of people. Further, the existing disability approach is framed within Western philosophy that excludes the cultural values and integrity of indigenous people and Global South perspectives. For example, the CRPD and the disability framework it offers is often considered individualistic, and it does not include or endorse the collective framework of disability and indigenous identity. Indigenous people all around the globe do not easily work as individuals or within individual constructs. So people with disabilities are systematically conceptualized from the Western, Eurocentric value of individualism, while efforts to engage with an indigenous approach and to educate people with disabilities and their communities is uncommon. Many indigenous norms, values and systems are gradually declining and some of them are even unfamiliar generally because they are oral stories which have not been documented and handed down and because histories are defined by people in power (Smith 2008) representing non-indigenous communities. State promotion of one language, one religion and monocultural nationalism have effectively marginalized indigenous people in the economic, civic, political and social spheres by allowing the dominant group to impose their values and norms on the rest of society through public policies for centuries. This process of cultural imperialism continues even today. Lack of accommodation of different cultures within the country and lack of power-sharing governance structures have excluded indigenous people from participation in decision-making and governance. This makes it difficult to have our voices heard as indigenous advocacy issues tend to be seen in political terms and are less debated than other issues. Thus, the structural challenges and exclusion experienced by indigenous people with disabilities at different layers and in different spheres are not well acknowledged or understood either within indigenous groups or more generally and this adds to the challenge of advocacy.

150  Pratima Gurung Hodgson (2002) and Kuper (2003, 2005) point out that indigenous people have experienced centuries-long state policies of assimilation and structural discrimination. Many indigenous communities live within political and social conditions that perpetuate extreme levels of poverty, chronic ill health, lack of access to education and poor life opportunities. Coupled with a lack of suitable rehabilitation services, this means that many indigenous people are vulnerable to acquiring impairment. They also experience increased exposure to environmental degradation, climate change impacts, natural and other disasters, conflict and higher rates of being victims of violence (including sexual violence and rape), dangerous working conditions and accidents (including in foreign employment), high rates of illiteracy, inadequate nutrition, low immunization coverage, high unemployment and underemployment rates, and low mobility (NFDN 2013). In addition, indigenous people with disabilities are constantly exposed to demeaning stereotypes, for example, they are considered to be dumb, illiterate or backward, which is attributed to alcoholism, laziness, dependence and lack of ‘higher order’ human qualities, and so on (Lawoti 2001). This view completely ignores the challenges experienced by indigenous people with disabilities, which is not helped by communal state policies that favour the dominant community. Because of all these above-mentioned factors, not all indigenous people with disabilities realize their rights and come with open minds and hearts to work in their community. A few indigenous people with disabilities, like members of NIDA and NIDWAN, have come to advocate for their rights by coining the term ‘a voice of our own’ and have developed self-advocacy by speaking up for themselves, speaking out for their rights and making decisions in the interests of their people. By raising their voices on the ground and at an international level they have become important representatives for their community and are listened to. Researchers have suggested that a self-advocate’s identity emerges from a two-part process: ‘(a) integration of disability positively into one’s sense of self and oneself into the disability community and (b) expansion to include an increasing variety of disabilities, other diverse communities struggling for equal rights, and a spiritual sense of oneness’ (Caldwell 2011, p. 315). Indigenous self-advocates in Nepal started by raising their voices in the disability community, which was often not welcoming, and led to experiences which were humiliating and full of challenges. Says the vice president of NIDWAN, We were often left out in programs and activities and found it difficult to be heard though we are members of both disability and indigenous federation based organizations. If we represented ourselves or participated, our issues and concerns were often ignored or lumped in with other issues and this situation still exists till today though the journey has moved ahead with some progress. The issues and practices of ‘indigenous groups’ are often perceived as a divisive agenda that promotes national disintegration/fragmentation in society or ethnic conflict. This mindset is held not only more generally but also among people with

Our lives, our story  151 disabilities and developmental partners working on disability. As the president of NIDA, Mr Khadga Magar, says, We are often blamed as fragmenting the society or being ‘racist’ in society while claiming the rights of indigenous peoples with disabilities. People with disabilities face barriers due to their functional limitation as well as cultural and historical exclusion. It is often a challenge to make people realize and understand about groups facing multiple and intersectional discrimination. Whereas gender is widely recognized as a distinct issue within disability, the issues of indigenous people with disabilities are not. The existing issues of people with disabilities are associated with the challenges of their disability interlinked with access to health, education, rehabilitation, accessible environments and social services, which are often not culturally friendly nor promote the collective rights of indigenous people. The minds of indigenous and other marginalized groups are shaped within dominant existing disability ideologies which lack a collective approach and cultural sensitivity. Families, friends and advisors have a role in supporting self-advocacy and these people are gradually being involved in our self-advocacy campaigns. The president of NIDWAN says, ‘For us diversity is our strength. Most often people understand diversity as a barrier, but it, in fact, connects the different worldviews and enables understanding to work together despite the challenges and complexity we have within ourselves.’ Self-advocacy involves four dimensions: (1) knowledge of self (strength, preference, goal, dream, interest, learning style, support need, accommodation need, characteristics of one’s disability, and responsibilities); (2) knowledge of rights (personal rights, community rights, human service rights, consumer rights, educational rights, steps to redress violations, steps to advocate for change, and knowledge of resources); (3) communication; and (4) leadership (connecting with and advocating for a group of similar others) (Test et al. 2005b). Not all indigenous people with disabilities are able to apprehend all these learnings in their lives because of the imposed cultural imperialism. Further, due to the lack of access to education and information, indigenous people with disabilities cannot easily take on the learnings from indigenous groups and from other people’s experiences. The president of NIDWAN in 2017 stated that, The lack of state investment and limited access to information on ‘distinct and collective identity’ of indigenous peoples and understanding on multiple and intersectional issues confine them to follow general trends of either indigenous rights or disability rights. So only few examples and evidences are examined to support different perspectives of indigenous people or women with disabilities. Despite these challenges, indigenous people with disabilities are doing ­self-advocacy and grooming their leadership in order to participate in different

152  Pratima Gurung events and to advocate their rights in ways that are leading to collective action on the ground. The leadership dimension of self-advocacy described by Test et al. (2005a) inherently shifts the focus from the individual to the collective. By publicly engaging in self-advocacy, indigenous people with disabilities have laid the groundwork for participating in, or developing, collective action within organizations and in the wider community. Collective action provides the infrastructure for coordination, offering both the resources to overcome obstacles to such action and a context for people’s attachments to collective goals (Flanagin et al. 2006, p. 32). Both NIDA and NIDWAN have been involved in organizing collective events, for example, workshops with indigenous women and women with disabilities organizations. Further, they have conducted meetings and presentations with the Committee on the Elimination of Racial Discrimination, which resulted in the preparation of the civil society reports for the CRPD in 2017 and Convention on the Elimination of all forms of Violence against Women (CEDAW) in 2018, with a consortium of indigenous women organizations of Nepal raising the issues of indigenous women with disabilities. With these reports they have received more than 15 references to protecting and promoting the rights of indigenous people/ women. This work in Nepal has provided indigenous people with disabilities the space to work together for the implementation of the CRPD and CEDAW alongside others who share their common and distinct issues and work towards social change. It has raised awareness among indigenous people with disabilities and provided space to unite with each other.

Stories as a power for collective voices The stories of indigenous people with disabilities are central to effective advocacy (Rich 2009). They are powerful and can cut through prejudice, build understanding and motivate people to challenge injustice. Storytelling can empower individuals and communities by recognizing their experience and expertise and promoting their agency (Ball 2013, p. 4). Storytelling transforms lives such that indigenous people with disabilities centre themselves, bringing stories of multiple and intersectional discrimination from their experience, which can be used as knowledge and a prompt for change in different domains. They share their stories in advocacy work so that their voices will be heard. As Anderson and Lawrence argue, ‘the goals of telling our stories are finding our voices and articulating the circumstances we encounter as we work to bring about social change in our communities’ (Anderson and Lawrence 2003, p. 17). The power of telling self-reflective stories demands that we tell our stories for ourselves and we change our lives towards active advocacy. In my role as president of NIDWAN in a CRPD consultation meeting among indigenous disability groups, I spoke about how our stories define us, who we are, what our situation is and what are we facing. They reflect our life, our behaviour and the challenges we face in our daily lives and provide insights about what life should be. Stories talk about community, culture and collective effort in the broadest sense. They explain how life should be and why and how we celebrate it. Each story teaches, inspires,

Our lives, our story  153 encourages and motivates both rights holders and duty bearers to move further so listening to indigenous women’s lived stories and experience is one way to learn about collective voices and the ways indigenous women are variably impacted. Thus, framing themselves within the stories sometimes bring us ways to heal ourselves, our families and our communities, and our challenging job advocacy in a collective way. Such stories vary depending on the context, situation and the message that they are trying to reflect in advocacy. They influence and engage people in actions one after another to change policies and practice (see, for example, UN Women 2018). The stories document not only our challenges but also our contributions. Speaking at the 62nd session on the Commission on the Status of Women, organized by UN Women, I argued, ‘we as rural women are not only victims, but also development actors, we make important contributions to our families and societies, so our discussions should be brought into the frontline’ (CSW 2018). This call for a higher recognition of the group’s needs and contribution unwraps collective discourse at the public level and can lead to further work towards inclusion, equity and equality of all marginalized groups in the mainstream development process.

Cross-movement collaboration: bridging the gaps and building relationships Cross-movement collaboration is relationship building and working together with women’s, disability and indigenous movements. It involves connecting people, beliefs and actions, by valuing reciprocity and building synergy to open learning with others, and implementing an inclusive approach in our work. This is shown in this statement by the president of NIDA: Both NIDA and NIDWAN have incorporated cross-movement collaboration, this collaboration has reached many grassroots organizations, building capacity among local communities and also learning from each other to create better strategies and include voices of the most marginalized. It has certainly been a challenging, risky process and sensitive, but the results we have seen thus far encourage us to believe that it has been well worth the struggle and we have to learn with these challenges to move forward. Similarly, as president of NIDWAN, I have argued that the paradigm shift towards cross-movement collaboration has to start first within us: ‘Then indigenous philanthropy can achieve goals by cultivating intercultural approaches and an enabling environment that is conscious of the importance of applying and maintaining an intersectional lens’ (Hernandez and Gurung 2017). Both NIDA and NIDWAN aim to break down silos by bridging gaps and building synergy across movements, institutions and groups, enabling us to develop strategies which support our learning and to build trust in each other as a basis for further collective action and advocacy. Cross-movement collaboration has been

154  Pratima Gurung extremely helpful in addressing exclusion issues. It was galvanized through the creation of a disability caucus at the 12th session of the United Nations Permanent Forum on Indigenous Issues (UNPFII) and its report on the situation of indigenous people with disabilities, and by the formation of the Indigenous Persons with Disabilities Global Network. These steps have opened avenues that need to be broadly expanded and initiated in the wider women’s and disability movements and discourse in order to realize indigeneity as a cross-cutting issue (Gurung 2017). In this regard, NIDWAN has been gradually engaging in a number of activities to increase its visibility in education, rehabilitation, research, advocacy and lobbying with international instruments and procedures like the CEDAW, CERD, the CRPD, the Universal Periodic Report (UPR) and other international instruments. By this means, we are building interaction among and beyond ourselves about specific and common issues. As the secretary of NIDWAN says, ‘We have been sharing our practical knowledge about how to work together to gain common solidarity for reaching the most marginalized groups in our local advocacy’ (Jamuna Tamang, National Consultation on CRPD, Kathmandu, 31 October 2017).

Linking with global advocacy At the national level, there is a lack of policies and programmes, including evidence, information and data on indigenous people with disabilities. State policy has not yet included indigenous people with disabilities and little research and evidence related to this group have been developed (NIDA et al. 2018). Because of this, national-level advocacy has shifted from a top-down to a bottom-up approach following the global advocacy of indigenous people with disabilities. The members of NIDA argue that global initiatives have guided us to advocate on our issues and concerns because there is less consultation and discussion at the national level (interview with Nwang Sherpa, Kathmandu, 10 November 2017). The on-the-ground experiences of indigenous people with disabilities provide organizations like NIDA and NIDWAN with information about the issues, situations, challenges and ways to move forward. The emerging issues and discussion at the global level frame advocacy and priorities at the national level. The formation of disability causes in the United Nations Permanent Forum on Indigenous Peoples and the formation of the Indigenous Persons with Disabilities Global Network have led to initiatives to unite indigenous people with disabilities from seven regions of the world and connect the issues, cultural values and integrity of indigenous people with disabilities in both the disability and indigenous movements globally. They have tried to link the global, regional and national advocacy agendas of indigenous people with disabilities for the protection and promotion of their rights. Global advocacy is focused on documentation and cross-movement collaboration based on four fundamental values of respect, reciprocity, responsibility and relationship. The first involves respecting the diverse identities and ways of life of all people. The second aims to make connections between indigenous people,

Our lives, our story  155 women and the disability rights movement, including other movements at a global and regional level. The third ensures diverse voices from different socioeconomic backgrounds are included and heard, and the fourth builds relationships to work together to encourage mutual learning and mutual respect. Based on the global initiatives, ‘the president of NIDWAN has been representing us in different international forums to raise the issues of under-represented groups within the larger groups of persons with disabilities and indigenous people’ (interview with Jamuna Tamang, 11 January 2018, Kathmandu). Such global advocacy has mirrored regional and national issues and has led to some conclusions and recommendations at the national level that have further enhanced work on the ground. For example, the IPWD Global Network is collectively working with regional organizations like AIPP in Asia and the AIPP is linking with different organizations at national levels by engaging them through their representation and participation in several meetings, workshops and events to raise the issue of disability, including multiple and intersectional discrimination.

Documentation and normative frameworks I remember in 2009 there were not any documents or reports from the UN on indigenous persons with disabilities and there was literature and writing from Australia, Canada, New Zealand and other countries and it was difficult to claim our rights and do our advocacy. Now Nepal’s adoption of the UN Declaration on the Rights of Indigenous Peoples (UNDRIP) and ratification of the Convention on the Rights of Persons with Disabilities have opened opportunities to claim and ensure the rights of people with disabilities and indigenous people. Moreover, the adoption of the World Conference on Indigenous Peoples Outcome Document in 2014 and the 2030 Agenda on Sustainable Development Goals, which has the support of more than 193 member states and has the aims of ‘reaching the furthest behind first’ and ‘leaving no one behind’, reflect new opportunities for change. Both of these documents share a commitment to include the voices and concerns of people with disabilities and indigenous people in efforts towards implementing the UNDRIP and other agreed on international instruments, such as the International Labor Organization (ILO) Convention 169, as well as the UN conventions. Moreover, since 2013 there has been some research about indigenous people with disabilities from the UNPFII (2013), Inter-Agency Support Group (IASG 2014), ILO (Rivas Velarde 2015), the UN special rapporteurs on the rights of persons with disabilities and on the rights of indigenous peoples (2016), and indigenous people’s statements and reports in the Human Rights Council that have reiterated their rights. These have provided evidence enabling reflection on the situation of indigenous people with disabilities and support for advocacy and lobbying (NIDA et al. 2018). Furthermore, the Committee on the Rights of Persons with Disabilities has made several recommendations to member states since 2011 on under-represented groups, including indigenous persons with disabilities (see IDA 2017a). Recently, Nepal has also received a Concluding Observation in relation to its state report on the CRPD and CEDAW with several recommendations

156  Pratima Gurung to implement and ensure the rights of indigenous peoples/women with disabilities (CEDAW 2018, CRPD 2018). This report was influenced by the submission of a shadow report from NIDA, NIDWAN and AIPP (IDA 2017b) and four consortiums of indigenous women. All these documents, reports and normative frameworks have provided space to engage, be involved with and do the work of advocacy for policy change at the national level. Both NIDA and NIDWAN have been actively engaged in doing this. However, to make such changes in policy depends on the state’s perception and commitment towards people with disability. In Nepal, the 2017 Disability Act has ensured rights for people with disabilities in line with the CRPD and included other types of disability category but the rights of indigenous people in policies have been excluded. Under-represented groups like indigenous people with disabilities and other marginalized groups were not part of the consultation process. The CRPD state report, the shadow report and the Disability Act are some recent examples showing that these groups have been excluded. Hence, the participation of indigenous people with disabilities in policy development remains low and they have almost no space in the national decision-making and consultation process (NIDA et al. 2018). In this context, the inclusion of indigenous people with disabilities in changing policies has remained a challenge. The Disability Act and the Inclusive Education Policy (2017) have not included indigenous adults and children with disabilities although they comprise 35 per cent of the total population of the country and continue to be marginalized and lack access to schooling.

Challenges and opportunities Funds and resources are two of the primary challenges for both NIDA and NIDWAN. They have been applying for grants and seeking collaboration with wider disability, women’s and indigenous organizations and movements; however, most of the collaboration with those organizations is for visibility and it remains difficult for NIDA and NIDWAN to mobilize resources and funds. Second, while most disabled people’s organizations and indigenous people’s organizations receive yearly support from the Ministry of Women, Children and Senior Citizens, Ministry of Finance, and municipal, federal, provincial and local governments, it is difficult for NIDA and NIDWAN to receive support and grants, not even from national and international donors, as there are no funds available for this intersectional work. Most advocacy work and activities are done on a volunteer basis and the small funding amounts that organizations do receive are one-off grants rather than being long term or enabling sustainability. Though intersectionality is a widely contested issue at present, there is minimal interest from the state, development partners or relevant stakeholders in investing in it and supporting grassroots organizations like NIDWAN. We find multiple and intersectional components included in the programmes and activities of state and development partners; however, such programmes are implemented with the involvement of only a nominal representative rather than with an overall strategy to reach the most marginalized groups.

Our lives, our story  157 In addition, meaningful participation and representation in decision-making are challenges that most indigenous people with disabilities experience. Often, indigenous people with disabilities are left out of programmes and activities or, if invited, their participation is likely to be tokenistic. There is little understanding of social, historical and cultural matters among indigenous people, and this has contributed to the low participation of indigenous people at all levels who are thwarted by prejudice when trying to access basic services like education, quality health and institutional processes. There are opportunities to work on human rights issues for indigenous people with disabilities as described by the recommendations to member states made by the CRPD, CEDAW, CERD, UPR and Convention on the Rights of the Child committees, and suggested by UN mandate holders like the special rapporteurs and in documents and reports from the United Nations. As an emerging issue, the IPWD Global Network has been working with different UN agencies and disabled and indigenous people-led organizations and stakeholders on consultation, advocacy and lobbying to ensure the visibility of indigenous people with disabilities at all levels. Empowering indigenous women and women with disabilities means that we must be at the table making decisions about the issues that affect us (UN Women 2017) and the effort continues.

Conclusion NIDA and NIDWAN have continuously played a significant role in setting the context and agendas to engage indigenous people with disabilities in an inclusive approach and in bridging the gap in Nepal and in Asia. However, this journey has to go further with new insights, visions and narratives. NIDA and NIDWAN and their members have their own stories of challenges, success and achievements that have motivated and provided spirit to work on the community collectively by building synergy at the regional and global initiatives and movements, which reinforces their community. They are role models and champions on their issues for change. Though the changes are slow, we believe we will achieve our goals with collective effort. NIDA and NIDWAN’s role in ensuring the rights of indigenous people with disabilities are slowly being recognized and has been crucial. There are challenges as well as opportunities to work on these issues, so indigenous people with disabilities have to take a collective focus for action and advocacy ‘for’ and ‘by themselves’, drawing on the limited available funds and resources, and collaboration with all civil society organizations and governments, to engage on this issue and develop the paradigm shift they are seeking. Their narratives reflect the society in which we live, behave and act so there have been spaces and gaps in working with and in respect to those groups who are still isolated and excluded. Indigenous people with disabilities, parents, family, community, the state, the UN and development partners also need to emphasize the interrelationship between affirmative action and concrete programmes and strategies with data and information for indigenous people with disabilities, to generate long-term social change and rights realization. Indigenous people with

158  Pratima Gurung disabilities, particularly indigenous women with disabilities, are still marginalized. States and governments need to recognize the vital contribution of advocacy and social movements as active change makers for indigenous people with disabilities. It is these stakeholders’ roles and responsibilities, via collective advocacy, to ensure that indigenous people with disabilities are not left behind and are in the collective journey for equality and human rights.

Note 1 All quotes from members of NIDWAN and NIDA come from the author’s field study in 2016–2018.

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Our lives, our story  159 Gurung. International Funders for Indigenous Peoples. Available from: https:// internationalfunders.org/three-important-ingredients-in-supporting-an-intersectionalapproach-in-indigenous-disability-rights-insights [Accessed 27 December 2018]. Hodgson, D., 2002. Introduction: comparative perspectives on the indigenous rights movement in Africa and the Americas. American Anthropologist, 104 (4), 1037–1049. International Disability Alliance (IDA), 2017a. IDA’s compilation of the CRPD Committee’s concluding observations: indigenous persons with disabilities. Available from: http:// www.internationaldisabilityalliance.org/indigenous-crpd-compilation [Accessed 27 December 2018]. International Disability Alliance (IDA), 2017b. Secretary general of Indigenous Persons with Disabilities Global Network participates at 8th CRPD pre-session, Geneva [blog]. 7 September. Available from: http://www.internationaldisabilityalliance.org/blog/ sg-indigenous-8th-crpd-presession [Accessed 27 December 2018]. Inter-Agency Support Group (IASG) on Indigenous Peoples’ Issues, 2014. Thematic paper towards the preparation of the 2014 World Conference on Indigenous Peoples: rights of indigenous peoples/persons with disabilities. United Nations. Available from: http:// www.un.org/en/ga/president/68/pdf/wcip/IASG%20Thematic%20Paper_Disabilities. pdf [Accessed 27 December 2018]. Kuper, A., 2003. The return of the native. Current Anthropology, 44 (3), 389–395, 400–401. Kuper, A., 2005. The reinvention of primitive society: transformations of a myth. London: Routledge. Lawoti, M., 2001. Racial discrimination toward the indigenous peoples in Nepal: nongovernment report for the third world conference against racism (WCAR). Kathmandu: National Planning Commission. Lawyers Association for Human Rights of Nepalese Indigenous Peoples (LAHURNIP), 2015. Annual report. Kathmandu: LAHURNIP. Lord, A., Sijapati, B., Baniya, J., Chand, O. and Ghale, T., 2016. Disaster, disability and difference: a study of the challenges faced by persons with disabilities in postearthquake Nepal. Kathmandu: Social Science Baha and UNDP in Nepal. National Federation of the Disabled-Nepal (NFDN), 2013. Monitoring the rights of persons with disabilities in Nepal: holistic report. Toronto and Kathmandu: Disability Rights Promotion International, York University and NFDN. Nepal Indigenous Disabled Association (NIDA), National Indigenous Disabled Women Association Nepal (NIDWAN) and Asia Indigenous Peoples Pact (AIPP), 2018. The rights of indigenous persons with disabilities in Nepal: reply from indigenous persons with disabilities organizations to the list of issues in relation to the initial report of Nepal. Submitted to the Committee on the Rights of Persons with Disabilities, 19th Session of CRPD Committee. Kathmandu, Lalitpur and Chiang Mai: NIDA, NIDWAN and AIPP. Rich, N., 2009. Reclaiming community legal centres: maximizing our potential so we can help our clients realize theirs. Melbourne: Victoria Law Foundation and the Consumer Action Law Centre. Rivas Velarde, M.C., 2015. Discussion paper: indigenous persons with disabilities: access to training and employment. Geneva: International Labor Organization. Available from: https://www.ilo.org/wcmsp5/groups/public/---ed_emp/---ifp_skills/documents/ publication/wcms_396412.pdf [Accessed 27 December 2018]. Sherpa, N., 2017. Interview, Kathmandu, 10 November. Smith, L.T., 2008. Decolonizing methodologies: research and indigenous peoples. London: Zed Books. Tamang, J., 2017. National Consultation on CRPD, Kathmandu, 31 October.

160  Pratima Gurung Test, D.W., Fowler, C.H., Brewer, D.M. and Wood, W.M., 2005a. A content and methodological review of self-advocacy intervention studies. Exceptional Children, 72, 101–125. Test, D.W., Fowler, C.H., Wood, W.M., Brewer, D.M. and Eddy, S., 2005b. A conceptual framework of self-advocacy for students with disabilities. Remedial and Special Education, 26, 43–54. United Nations Permanent Forum on Indigenous Issues (UNPFII), 2013. Study on the situation of indigenous persons with disabilities, with a particular focus on challenges faced with regard to the full enjoyment of human rights and inclusion in development. New York, NY: UNPFII. UN Special Rapporteur on the Rights of Indigenous Peoples and UN Special Rapporteur on the Rights of Persons with Disabilities, 2016. Expert group meeting on indigenous persons with disabilities: final report. Geneva: ILO. https://www.ohchr.org/EN/Issues/ Disability/SRDisabilities/Pages/IPDisabilities.aspx UN Women, 2017. From where I stand: ‘We must be at the table making decisions’, 19 April. Available from: http://www.unwomen.org/en/news/stories/2017/4/from-wherei-stand-pratima-gurung [Accessed 27 December 2018]. UN Women, 2018. Four indigenous women who are claiming their space, 23 May. Available from: http://www.unwomen.org /en/news/ stories/2018/4/compilationindigenous-women-claim-their-space [Accessed 27 December 2018]. World Health Organization (WHO) and World Bank, 2011. World report on disability. Geneva: WHO.

11 Sex trafficking, activism and disability Mark Sherry

Background This chapter is partly informed by my own reflections as a scholar-activist working with sex trafficking victims from 2013 to 2017. By ‘scholar-activist’, I am referring to engaged work in the community which has the purpose of promoting social change. In this regard, I have met with trafficked individuals, multiple organizations advocating for trafficked victims, legal representatives of these victims, unions and labour organizations representing people who experience forced labour and debt bondage, and many disability organizations. My experience also includes meeting victims from the Global South (the primary source of victims), visiting trafficking organizations and advocates in destination countries in Europe, and participating in online discussions with Global South victims and advocates. From 2004 to 2006, I was the Chair of Disability Studies at the University of Toledo in the United States. Though I was new to the area, I quickly established a wide network of disability connections throughout Toledo. I gave talks to (and required my students to attend meetings at) most of the major organizations representing disabled people in the city, including the Ability Center, Sight Center, Deaf Club, Epilepsy Center, Brain Injury Association, Self-Help for Hard of Hearing, National Multiple Sclerosis Society, People First, the National Association of the Mentally Ill, a user-led psychiatric survivor group, two local autism groups, two service dog groups and many others. Representatives of these organizations also came and spoke at my classes. I’d also met with people from (and given talks at) the County Board of Developmental Disabilities, the Bureau of Vocational Rehabilitation, the local first responders groups (ambulance, fire, police), some hospitals and the Governor’s Council on Disability. I was on the Executive Board of some disability organizations and on the Mayor’s Commission on Disability. Most weekends I would speak at one of these community groups, and students in every one of my classes would be required to attend meetings at disability organizations every semester. As a result, I had very detailed knowledge of disability politics in Toledo. None of the disability organizations in Toledo were doing anything about human trafficking while I was in this role. Not one. Even now, over a

162  Mark Sherry decade later, disability organizations only get involved in the issue after a client self-reports that they have been trafficked. At that (very late) stage, the usual response of disability agencies has been to panic and shriek, ‘What do we do?’ to which others in the disability area respond, ‘We don’t know!’ Such inadequate responses horrify me. In Toledo, only one or two disability agencies attend local, regional, statewide or national trafficking meetings – the ones who have already had clients who were trafficked and whose legal position now requires them to do so as a matter of legal liability. This leads me to the first obvious implication of this chapter: disability organizations cannot continue to ignore human trafficking. Not surprisingly, given the failure of almost all disability organizations to address this issue, my entrée to human trafficking activism in Toledo did not arise from my involvement in the disability movement, but rather in my role as a union delegate to the regional trade union council, the Northwest Ohio AFL-CIO. As an activist, I had organized union rallies, mass meetings, protests, meetings, petitions, news conferences and so on. I also attended monthly meetings of the joint union representatives as well as smaller meetings and telephone conference calls four or five times a week, and ran a Facebook group about labour issues in Ohio. I became aware of the exploitation of farmworkers by listening to their stories at union meetings. They are represented by the Farm Labor Organizing Committee (FLOC). Many farmworkers are trafficked into the United States for forced labour or debt bondage (Izcara Palacios and Yamamoto 2017). These farmworkers include child labourers who are far too young to legally smoke, but seemingly old enough to pick carcinogenic leaves (Human Rights Watch 2014). I met with people from FLOC over many years, attended events, organized student internships with the organization, participated in telephone conferences, and attended union and social functions with them. FLOC represents many Mexican farmworkers trafficked into the United States from Mexico in order to provide cheap labour for US farmers. As well as being trafficked, farmworkers experience incredibly high levels of impairment as a result of their dangerous working conditions (Barrick et al. 2014, Arcury et al. 2015, Kearney et al. 2015, Barrick 2016). Their experiences demonstrate the ways in which the contemporary experience of human trafficking is linked to broader developments in globalization, neoliberalism, postcolonialism and political economy. The North American Free Trade Agreement (a neoliberal policy which removed tariffs on trade goods between Canada, Mexico and the United States) decimated agriculture in Mexico, with the flow-on effects resulting in large-scale undocumented immigration from Mexico to the United States (Michaels 2012). This is also the economic backdrop that creates the conditions for human trafficking to flourish. But there are significant differences between labour trafficking and sex trafficking, particularly in terms of the cultural construction of such crimes and their gender/racial/nationalist dynamics. I learned some of these differences by becoming involved with victims of sex trafficking in Toledo in the period 2013–2017. Over that time, I have voluntarily given talks to multiple sex trafficking organizations, primarily at the local level (such as the Lucas County Human Trafficking Coalition). Sex trafficking is widely recognized as a serious problem in Toledo,

Sex trafficking, activism and disability  163 Ohio. Toledo is a common destination, transit and source area for trafficking throughout the United States (Wilson and Dalton 2007, Williamson and Baker 2012). Indeed, it has been identified as the number one city in the United States for trafficking per capita (Meyer 2010). It is far too soon to say that we have established ‘Epistemologies of the South’ (Santos 2015) in terms of disability and sex trafficking, or even that we have a good sense of the overall picture of disability advocacy on this issue – actually, we barely know anything about it. Sadly, the work has not been done, the issue has not been prioritized and the voices of a small number of committed activists who work on this issue have not been given enough attention. One example of a disability rights organization doing groundbreaking work is Disability Rights International (see the website www.driadvocacy.org). It has done vitally important work in exposing the human trafficking of disabled people in multiple countries, including Mexico and the Ukraine. Such work needs to be replicated elsewhere; victims of human trafficking need to be recognized and included in the disability movement and their experiences need to be given a higher profile in both research and disability activism. Unfortunately, when I talk to representatives of sex trafficking organizations, they report experiences that I would see as fitting under the broad rubric of disability and human trafficking, but they don’t frame them that way. For instance, when I talk to workers and executives in human trafficking organizations, they are fully aware of the high rates of post-traumatic stress disorder (PTSD), depression, anxiety and substance abuse among their clients, but they rarely frame those experiences in terms of ‘disability’. They recognize the rapes and violence, but rarely frame their service users as having impairments that stem from physical and sexual trauma. In this chapter, I hope to demonstrate enough of a connection between these issues so that such ignorance is no longer considered acceptable.

The nature and scope of trafficking Human trafficking has been defined by the United Nations as: the recruitment, transportation, transfer, harbouring or receipt of persons, by means of the threat or use of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability or of the giving or receiving of payments or benefits to achieve the consent of a person having control over another person, for the purpose of exploitation. Exploitation shall include, at a minimum, the exploitation of the prostitution of others or other forms of sexual exploitation, forced labour or services, slavery or practices similar to slavery, servitude or the removal of organs. (United Nations Office on Drugs and Crime 2016) There are multiple forms of human trafficking, including labour trafficking, sex trafficking, the recruitment and use of child soldiers, the use of child labour, and trafficking in human organs. Sex trafficking is the most well-known form of human

164  Mark Sherry trafficking. Victims of sex trafficking are forced into prostitution, stripping, massage parlours, peep shows, pornography, phone and video sex, being escorts, and other sexual activities. They may be trafficked domestically or internationally. The International Labour Organization (2015) estimates that globally there are 20.9 million victims of forced labour, including sex trafficking. The United Nations Global Report on Trafficking in Persons (2016) also provides some statistics: •• •• ••

79 per cent of trafficking victims who have been detected are women and children. Over 50 per cent are victims of sex trafficking and almost 40 per cent of victims identified between 2012 and 2014 were victims of forced labour. Approximately 40 per cent of cases involve domestic, rather than transnational, trafficking.

However, we must take these figures with a grain of salt. Estimates of the numbers of human trafficking victims suffer from many problems, including flawed definitions, problematic methodologies, inattention to some types of trafficking (and overemphasis on others), and varying police and reporting practices (Cannon et al. 2016, Van Dijk and van der Heijden 2016, Dempsey 2017, Russell 2017). Additionally, most people who engage in trafficking are neither arrested nor convicted. There were only 14,897 prosecutions for human trafficking globally in 2016 and approximately 40 per cent of the traffickers who were prosecuted were found not guilty (US Department of State 2017). Quite simply, we do not know how many people are trafficked. We need more research, conducted with and by victims of human trafficking, to get an accurate picture of the problem. Regardless of the problems associated with estimating the size of the problem, it seems that the majority of cases involve people trafficked from the Global South to the Global North, reflecting (and reinforcing) wider patterns of global inequality. There are always major questions about the validity and reliability of any data on illegal activities. But the most detailed empirical cross-national analysis of source and destination countries to date was conducted by Majeed and Malik (2017), who studied official data from 169 countries from 2001 to 2011 and concluded that, overall, poor countries are the source countries for human trafficking (with the exception of the conscription of child soldiers). Earlier research by Kangaspunta (2003) using UN data suggested that the three areas from which victims are most likely to be trafficked are Asia, the Commonwealth of Independent States and Africa. Human trafficking involves large numbers of children – underage girls and boys – who by definition lack the legal capacity to consent. It has been estimated that 2 million children per year are victims of child sex abuse tourism alone (Kosuri and Jeglic 2017). Many more experience commercial sexual exploitation online. The UN Special Rapporteur on Trafficking in Persons has commented that ‘increasingly younger girls [are] being trafficked into the sex trade’ and that in India, ‘over 60% of those trafficked into sex work are adolescent girls in the age

Sex trafficking, activism and disability  165 group of 12–16 years’ (Huda 2006). One study of US children who were victims of sexual exploitation and who visited paediatric clinics reported that all the victims were girls (Varma et al. 2015). Predatory capitalism is the often-unstated link between the body politic and the bodies of those who are trafficked. In predatory capitalism, everything has a price, even human beings. Human trafficking is a manifestation of this ethos of greed and exploitation. The commodification and objectification of women’s bodies, as well as widespread forms of interpersonal violence against women, flourish in such an economic and social context. Predatory capitalism is highly gendered, classed and racialized and relies on the exploitation of youth (particularly poor youth from the Global South). At the individual level, pimps buy, sell, trade, move, kill, torture, rape, molest, enslave, impregnate and commit other atrocities upon the bodies and minds of their victims. But it is important to move beyond the individual level because human trafficking is a large-scale, transnational issue. We must always consider the effects of globalization, militarization and neoliberal economic policies in order to identify the economic, political, cultural and legal factors involved in human trafficking.

Activist debates about sex trafficking Unfortunately, in activist debates, sex trafficking is sometimes conflated with prostitution, even though they are quite distinct, legally and conceptually. ‘Prostitution’ is a loaded word in these debates, used extensively by the group known as Abolitionists and refused by the other group known as Pro-Sex Work advocates (Miriam 2005). I have chosen to use ‘prostitution’ in places in this chapter both to recognize the laws which either make prostitution legal or illegal, to recognize that people are ‘prostituted’ (sold) against their will and also to summarize the discourse of Abolitionists. Importantly, in the UN definition, it is not prostitution per se which is regarded as sex trafficking but ‘the exploitation of the prostitution of others’ (emphasis added). The use of the term ‘prostitution’ has been criticized by many Pro-Sex Work advocates because of its stigma; they refer to the activity as ‘sex work’ instead. But the term ‘sex work’ is also problematic because it hides many different shades of motivation, activities and forms of power encompassed in that label. ‘Sex work’ is a term which may also be applied to other acts in the commercial sex industry outside prostitution, but the exact limits of this term are often unclear or undefined. Amnesty International supports the legalization of ‘sex work’. It has been criticized by some activists for adopting such a broad definition of ‘sex work’ that it provides protection for pimps – those who profit from the prostitution of others. On another note, the term ‘sex work’ is arguably problematic because the emotional labour in many consensual, intimate, non-commercial relationships could also be called ‘sex work’. Unlike many other forms of slavery where the definition is widely regarded as uncontroversial (such as forced labour), the concept of ‘sex slavery’ has been the subject of contentious debates. Feminists have been divided on the nature

166  Mark Sherry of ‘sex slavery’ and the appropriate responses to it. Some feminists use ‘sex slavery’ to mean sex trafficking as typically defined by international law and criminal courts: using fraud, force or coercion to obtain a commercial sex act (such as prostitution, pornography or other sexual performances) in exchange for something of value (e.g. money, drugs, food). Others use it as a synonym for paid sex and deny that anyone could freely choose that occupation if given better alternatives. The dispute is often crudely framed between Pro-Sex Work activists and Abolitionists. In this simplistic dichotomy, Pro-Sex Work advocates are those who argue that people can freely choose a life of sex work, without coercion or exploitation, because it is a legitimate occupation just like any other. They maintain that the choice of engaging in sex work cannot be equated with sexual slavery. On the other side of this simplistic representation are the Abolitionists who argue that prostitution is, by its very nature, sex slavery. Abolitionists believe that prostitution is unlike other jobs because of the physical, sexual and psychological harm and violence it involves (Pourmokhtari 2015). This unique harm is usually framed in terms of a wider understanding of economic, social and political power and inequality (Baker 2015). Abolitionists do not support the legalization of prostitution, in general. One influential example of the Abolitionist perspective was provided by Farley (2006, p. 136), who stated that, ‘State sponsored prostitution provides a legal welcome to pimps, traffickers, and johns’ (Johns are the purchasers of paid sex activities). Across nine countries, she found incredibly high rates of torture, rape, violence and threats of violence, sexual and verbal degradation, sexual assault, repeated traumatization and threats to kill children and family members. As a result, across these nine countries, 68 per cent of women in prostitution had PTSD (Farley 2006, p. 116). Farley contextualized prostitution as ‘the choice made by those who have no choice’ (italics in original) because it reflects the combined effect of ‘sex discrimination, race discrimination, poverty, abandonment, debilitating sexual and verbal abuse, poor education or no education, and a job that does not pay a living wage’ (Farley 2006, pp. 110–11). Farley and other Abolitionists are correct in identifying the victims of sex trafficking as almost exclusively women and girls. For instance, of the 389 confirmed sex trafficking cases in the United States between 2008 and 2010, 94 per cent of victims were female (Banks and Kyckelhahn 2011, p. 6). Watson and Silkstone (2006) argue that sex trafficking should be seen as a form of gender-based violence since it operates within a broader context of systematic gender inequality. They comment that, ‘Buyers of sexual services generally have money, stability, education and power, in stark contrast to the resources available to the women and children whose services they buy’ (Watson and Silkstone 2006, p. 113). There is not a single sex industry anywhere in the world that does not include people forced against their will to perform sexual acts. For instance, a study of 580 people who worked in brothels in West Bengal, eastern India, found that 24 per cent of the workers were sex trafficking victims (Sarkar et al. 2008). There is

Sex trafficking, activism and disability  167 also an ever-present threat of violence or even murder (as well as an alarming rate of kidnapping) within sex trafficking (Riegler 2007). Such coercion is not a minor by-product of human trafficking; it is a key ingredient. One small study of 29 victims (24 of whom were women and mainly from Africa) found that both victims of sex trafficking and other forms of human trafficking are usually subject to violence, including sexual violence, as well as threats to themselves and others, and various forms of deprivation (Stanley et al. 2016). Importantly, in terms of this chapter’s focus on disability, one-third of these victims identified as having a learning disability or difficulties reading in their own language. There is profound disagreement among activists over the appropriate responses to sex trafficking. Abolitionists suggest that victims of sex slavery need to be ‘freed’ (Free The Slaves and Fondasyon Limyè Lavi 2014) and some say they need to be ‘rescued’, but Pro-Sex Work activists avoid that term because of its power-laden connotations. Framing the victims of sex trafficking as slaves who need to be ‘rescued’ is problematic because it positions people from the Global North in some ‘saviour’ role for exploited people from the Global South (Kempadoo 2015). Additionally, the distinction between the ‘victims’ of trafficking and those who choose to be sex workers without any experience of trafficking is often associated with moralistic agendas about sex (Cheng and Kim 2014). Abolitionists are criticized by Pro-Sex Work advocates for assuming that laws will protect victims of trafficking. Pro-Sex Work activists often argue that various states are either complicit or actively encourage human trafficking through various means including corruption (Bales 2002, Servaes 2017). However, this criticism of Abolitionists seems somewhat unfair as the nature of criminal laws, immigration reform and social policies supported by feminist Abolitionists vary widely (Dempsey 2010). Kinney argues that while the discourse of ‘sex slaves’ is a ‘solidarity-inducing denominator’, it also serves to simultaneously destigmatize sex slaves while recirculating the stigma associated with other ‘voluntary sex workers’ and ‘illegal aliens’ (Kinney, 2015, p. 95). It certainly should be recognized that the official process of ‘rescue’ can itself criminalize the victims of human trafficking if the victims do not appear to law enforcement officials to be obviously enslaved (Chacón 2010). For those victims who are ‘illegal aliens’, police raids which occur in the name of rescue can result in prosecution, incarceration and deportation. This criminalization of migrant victims fits within a broader discourse that involves the demonization of transnational migrants, particularly those from the Global South. It relies on a combination of prejudice, racism, xenophobia and hostility to ‘illegal aliens’ that criminalizes those who do not match the image of the ‘perfect victim’ – a discourse which has been called ‘crimmigration’ (Kinney 2015, p. 92). Another criticism of the ‘rescue’ discourse from Pro-Sex Work advocates is that its proposed solutions – raiding the places where sex trafficking victims are located – does nothing to alter the broader systematic, transnational inequalities that are implicated in sex trafficking. Magar (2012) emphasizes the point that

168  Mark Sherry most anti-trafficking responses do not address issues such as poverty and vulnerability in source countries. Other factors, such as global wealth inequality, war, traditional gender ideologies and racism, have also been identified (Baker 2015). Feminists who support the repatriation of victims to source countries have been accused of ignoring these issues and displaying ‘feminist indifference’ to the victims’ plight once they have been removed from the destination country (Halley et al. 2006, p. 420). Abolitionists have also been accused by Pro-Sex Work advocates of ignoring the agency of sex workers. This criticism is not entirely justified, however. As Miriam argues, such resistance and agency is recognized but is positioned within a broader social and cultural context of inequality and male domination. For Abolitionists, these women’s choices are constrained in a culture that enshrines men’s ‘politically and tacitly legitimized demand to have physical, sexual and emotional access to the capacities and bodies of other (e.g., gendered) groups of people’ (Miriam 2005, p. 13). A more convincing critique is that Abolitionists have not integrated the perspectives of sex workers sufficiently (Cojocaru 2016). There is some merit to this argument; clearly, where Abolitionists have not included the rights, discourses and perspectives of people who are directly involved, they need to be criticized. But not all Abolitionists have made this error. The polarized nature of the debates and the incredible emotion these arguments have generated have meant that some of the concrete connections between Abolitionists and the victims of sex trafficking (and the applied research that has been done with this population) have been underestimated. Sometimes this critique is taken to imply that Abolitionists use the language of sex slavery but those who engage in paid sex do not. However, even some Pro-Sex Work activists recognize that there are others within the sex industry who are ‘sex slaves’, even if they differentiate themselves from this population. As a result, it is too simplistic to assume that the victims of human trafficking do not refer to their experiences through the discourse of slavery or sex slavery. Additionally, the use of the term ‘slavery’ is often a deliberate recognition that these people are sold and traded, just like other slaves throughout history, such as those who were the victims of the Atlantic slave trade. It is therefore best to acknowledge that a variety of discourses are employed at different times, by different groups and for different purposes. For instance, one of these purposes can be to connect to international laws and agreements which specifically include ‘slavery’ in their definitions of human trafficking. Emphasizing that these acts are crimes, as defined by international law, is one technique advocates have used to gather both attention and resources for this issue. Having summarized some of the activist debates within feminism, it is necessary to highlight the failure to integrate disability within these discussions. This failure to consider an entire population affected by sex trafficking is a shameful reflection of nondisabled privilege as well as exclusion and disablism. The next sections of this chapter will address two of the issues associated with disability, namely, the incidence of impairment among trafficking victims and the calls for access to paid sex within the disability movement.

Sex trafficking, activism and disability  169

Trafficking makes people disabled If you are not disabled when you are first trafficked, you almost certainly will be afterwards, because traffickers consistently inflict serious physical or psychosocial injuries on their victims. Human trafficking is ‘a multi-staged process of cumulative harm’ (Zimmerman et al. 2011, p. 327). Indeed, in my personal experience, confirmed by advocates and service providers as well as the existing literature, it is best to assume that all victims/survivors have some sort of impairment due to the multilayered physical and emotional trauma inflicted on them. By making this assumption, we are immediately aware of the need for disability-sensitive, accessible, trauma-informed services involving the empowerment of people who have been trafficked. The incidence of disability among victims of human trafficking is vastly underestimated, but the impairments that are created by trafficking (e.g. the Post Traumatic Stress Disorder (PTSD) and Traumatic Brain Injury (TBI) that often accompany trafficking) need to be acknowledged. For instance, a 2016 review of 31 studies reported that victims experienced high levels of violence, significant physical health problems, including headaches and bodily pain, and psychosocial problems, such as depression, anxiety and PTSD (Ottisova et al. 2016). I conducted my own review of 2017 publications to provide a more up-to-date sense of the literature. Studies I examined consistently found alarming levels of post-traumatic stress, anxiety and depression among victims of various forms of trafficking across the globe (Doherty et al. 2016, Cohen et al. 2017, Contreras et al. 2017, Hopper 2017a, Levine 2017, Moore et al. 2017, O’Brien et al. 2017, Pascual-Leone et al. 2017, Powell et al. 2017). Higher rates of substance abuse disorders have also been reported (Hopper 2017b, O’Brien et al. 2017). Over 1,100 victims from Cambodia, Thailand and Vietnam were included in the study by Kiss et al. (2017) and 22 per cent experienced a serious injury, 61 per cent experienced depression, 42 per cent experienced anxiety, 38 per cent had PTSD and 5 per cent had attempted suicide in the past month. Research from Nepal found 87 per cent of victims met the clinical criteria for anxiety, 85.5 per cent had diagnosed depression and 29.7 per cent had PTSD (Rimal and Papadopoulos 2016). These impairments are a direct result of the cruelty and trauma associated with trafficking, such as threats of violence to the victims and their families, being locked in premises, and assaults or other forms of coercion. Acute physical injuries (fractures, lacerations, trauma to the sexual organs and head injuries) are common – 70 per cent of the victims in Lederer and Wetzel’s (2014) study had experienced physical injuries (usually to the head or face). Varma et al. (2015) reported that 40 per cent of the trafficked girls in the United States who they studied had experienced a loss of consciousness, fractures or wounds. Paediatricians at the Hasbro Children’s Hospital in Rhode Island reported 92 per cent of children who reported being the victims of sex trafficking also had a substance abuse disorder (Moore et al. 2017). Victims of sex trafficking also have much higher rates of sexually transmitted infections and AIDS (Goldenberg et al. 2015). One of the reasons for this

170  Mark Sherry outcome is that pimps and johns expect their victims not to use condoms and punish them if they do (Ravi et al. 2017). An eastern Indian study found that the more violence a trafficking victim experiences, the more likely they are to develop HIV, presumably because of the increased rate of rape and forced unprotected sex (Sarkar et al. 2008). A study of 119 patients who were trafficking victims using National Health Services in the UK reported that 20 per cent of victims also experienced psychotic symptoms (Cary et al. 2016). However, this finding needs to be contextualized. Most (but not all) recent studies have found that the majority of victims did not utilize healthcare services while being trafficked and when they did access them after trafficking, they experienced a range of disabling barriers. These disabling barriers which must be addressed in future include judgemental attitudes, not being believed, delays in receiving care, not having continuity of care, lack of services, cost, cultural barriers and eligibility barriers; they lead to significant distrust of healthcare and welfare workers (Ijadi-Maghsoodi et al. 2016, Westwood et al. 2016, Geynisman-Tan et al. 2017, Ghafoori and Taylor 2017, Hopper 2017a, O’Brien et al. 2017, Powell et al. 2017). Unfortunately, a lack of training among health and emergency workers regarding how to respond to trafficking is also common (Geynisman-Tan et al. 2017). This alarming rate of impairment does not mean that trafficking victims identify as ‘disabled’ – but they are far from alone there. Many people with impairments (even profound, lifelong impairments) do not identify as disabled (Sherry 2006). Indeed, given the levels of prejudice and discrimination which disabled people experience, such identity choices make sense. But that does not mean they don’t experience disabling barriers. In my scholar-activism with the agencies that serve trafficking victims, for instance, few of them screen victims for head injuries (though the research shows such injuries occur at incredibly high levels). Even fewer offer the appropriate disability accommodations for people with head injuries. In my own activism with human trafficking advocates, I am consistently amazed by their failure to recognize the trafficking of disabled people (almost always disabled women) via the fetish industry. In previous talks to these advocates, I have focused specifically on this topic (Sherry 2015, 2016, 2017). Space restrictions limit my capacity to do so here yet I need to stress that there is a market particularly for rape videos of people with intellectual/learning disabilities, women (and to a lesser degree, men) with dwarfism, Asian women who are Deaf, female amputees and other disabled people. Rape videos of women with intellectual disabilities flourish among those who seek victims that are unlikely to be believed in court, amid a market that has sick fantasies of power, rape and sadism. Asian Deaf women are particularly targeted because they are assumed to be the ultimate in submissive femininity. Female amputees are often targeted for upskirt videos, which are sold among devotees and others who fantasize about unwilling and unknowing victims. I have also seen advertisements on the dark web where fetishists can pay for forced amputation of body parts of victims. It is now necessary to turn to the movement for sexual access rights for disabled people and its failure to grapple effectively with the issue of human trafficking.

Sex trafficking, activism and disability  171

Disability, sex rights and sex trafficking Activists who demand increased sexual access for disabled people situate sexual exclusion alongside all the other forms of exclusion, marginalization and prejudice that disabled people experience. They emphasize the physical, social, psychological and sexual harm that result from disabled people’s limited sexual options and further suggest that commercial sex can be invigorating and empowering for the disabled people who use it. However, these advocates generally discuss commercial sex without discussing sex trafficking within the sex industry. This failure to acknowledge the experiences of sex trafficking victims leads to a one-sided, unqualified demand for access to things like prostitution. But it is vital to acknowledge that the commercial sex industry is where victims of sex trafficking are found. In my discussions with disability rights activists about ‘sex rights’ or ‘sexual access’, there is often an unspoken conflation of ‘sex rights’ with paid sex, without acknowledging that this is an incredibly narrow approach to the entire issue of sexuality. Such a limited perspective ignores many other forms of intimacy and relationships. This omission is disappointing because having access to a wide variety of interpersonal relationships and interactions of all different types on a continuum of closeness, connection and affection could also address the psychological harms which motivate the demand for sexual access. Likewise, it sometimes feels as though some activists believe increased sexual access to the commercial sex industry will result in increased social inclusion, as if this is a unidirectional cause-and-effect dynamic. Indeed, any suggestion that using paid services is the best chance disabled people have to engage in intimacy seems particularly pessimistic. It inaccurately (and offensively) attributes such abjection to disabled people that they would seem unattractive to all potential partners. It also ignores the ways in which increased or alternative social opportunities and social inclusion may also increase disabled people’s chances of developing intimate relationships. Another element of this issue which needs to be discussed is that if the demand for sex services for disabled people is framed in terms of human rights, it is disingenuous and even hypocritical to ignore the human rights of victims of sex trafficking. Indeed, in terms of liberal political theory, the basic human right to freedom from slavery, violence, exploitation, degradation and dehumanization would tend to trump almost all other competing demands. It is important to acknowledge that whenever disabled people are using sex trafficking victims, they are exploiting them. Using a slave for any purpose, including sexual gratification, is always unjustifiable exploitation. Every single person who uses a sex trafficking victim is by definition exploiting them and that act is always unconscionable. Jeffreys states that ‘when disability studies have approached the issue of sexuality they have not usually disaggregated the interests of women with disabilities from those of men with disabilities’ (Jeffreys 2008, p. 328). Some critics suggest that behind the veil of androgyny lies an implicit focus on men’s desire for access to women’s bodies (García and Álvarez 2014). They emphasize that demand for

172  Mark Sherry access to paid sex largely comes from disabled men and not disabled women. Jeffreys (2008, p. 332) cites a study by Disability Now which found that in the UK, where prostitution is illegal, 22.6 per cent of disabled men had used what it euphemistically called ‘sexual services’ compared to less than 1 per cent of disabled women. That UK study also found that far more disabled men than disabled women had ‘considered’ using sexual services. Jeffreys’ argument is that a masculinist perspective dominates such discussions – ‘the male sex right’. The question which therefore needs to be explored is whether the demand for commercial sex by disabled men reflects a male privilege that is soaked in ideas of entitlement, power, inequality, violence, exploitation and the demand/ expectation of unrestricted access to women’s bodies. Even then, it is a particular (privileged) group of disabled men who tend to dominate activist campaigns, as Liddiard notes: individual campaigners have also stressed the necessity of commercial sex work as a legitimate form of sexual access for disabled people. Notably, the sexual stories of White heterosexual disabled men with physical impairments have featured prominently in such calls, and their sexual stories have been prominent within the media. (Liddiard 2014, p. 840) The fact that it is a more privileged group of disabled men – men with physical impairments – who are featured in these campaigns is noteworthy. They rank higher in terms of social acceptance and the disability hierarchy than men with other types of impairments, such as cognitive or psychiatric impairments (Sherry 2006). Such power dynamics would be problematic enough, but this is not simply a sex or gender issue. The commercial sex industry is generated by, and thrives on, inequalities associated with sex, gender, race, class, nationality and many more forms of power. The purchasers of commercial sex tend to be more privileged men from the Global North and the victims of sex trafficking tend to be poorer women and children from the Global South. Discussions of disability and sexual access must incorporate all these intersectional issues of power, inequality, privilege, domination and marginalization. One question for disability advocates, then, is whether support for access to paid sex amounts to tacit support for the fundamental socioeconomic and cultural inequalities that generate the labour supply for (and the human trafficking within) the sex industry. The relationship between the movement for sexual access and the broader commercial sex industry is problematic. When I speak with, or read about, the demand for disabled people’s sexual access, I rarely if ever see this demand framed alongside the demand for justice against traffickers, pimps and other exploiters of sex slaves. Presenting a one-sided image of the commercial sex industry benefits no one, least of all the victims of sex trafficking. It is not just inaccurate, it is harmful. Recognizing sex trafficking, and being allies with sex slaves, means opposing these pimps. Sex trafficking is big business – and the only justifiable position for

Sex trafficking, activism and disability  173 the disability movement is to ally itself with the victims of sex trafficking, not those who profit from it. The disability movement must also publicly criticize the commercial sex industry for framing disabled people as unworthy of sex, outside of what has been called a ‘pity fuck’ (Rozengarten and Brook 2016). The images of disability which are circulated by the commercial sex industry are often deeply offensive, implying that the only way disabled people can have sex is through the charity of sex workers – a form of pity politics and abjection. Presenting disabled people as fundamentally undesirable is deeply offensive, implying that people would not freely choose disabled people as sexual or relationship partners. This discourse damages the self-esteem of many disabled people. Rozengarten and Brook suggest that it particularly harms disabled women, who are more likely to experience abusive relationships and who may stay in such relationships because of the inaccurate belief that no one else would want them. Some disability studies scholars do present a more nuanced perspective of the demand for access to the commercial sex industry than the masculinist approaches that tend to dominate activist demands. For instance, Liddiard argues that the demand for sexual citizenship by disabled people is not simply a matter of access to commercial sex, but also involves other concerns such as sex education, privacy, sexual support or access services, marriage and custody rights, and support for those who experience various forms of violence (including domestic violence, care-related violence and other forms of institutional and interpersonal abuse) (Liddiard 2014). In terms of paying for sex, Liddiard suggests that differences in embodiment, experience and psychosocial motivations mean that disabled men’s motivations for, and experiences with, the commercial sex industry can also be dissimilar from other men. Likewise, Bahner’s discussions of Swedish approaches to facilitated sex offer a more nuanced discussion of the multiplicity of possibilities for disabled people’s sexual expression, and the varying legislative/policy/practice approaches towards the issue of disabled people expressing their sexual needs (Bahner 2012, 2013, 2016a, 2016b). There are, as Bahner demonstrates, conflicts between the philosophy of self-determination which underlies general social policies towards disability with the more restricted approaches towards sexuality in particular. A public/ private divide, discomfort with disabled people’s sexuality and various forms of abjection are reinforced by personal assistants, management and legislative/policy guidelines, effectively separating social rights from sexual rights. Having said that, however, neither Liddiard nor Bahner specifically focuses on sex trafficking and disability. There are, as this chapter has demonstrated, unique elements of that experience for disabled people.

Conclusion This chapter has highlighted the problem of sex trafficking within the paid sex industry and has argued that the victims of trafficking are largely women who either are disabled when they are initially trafficked or who develop impairments as a result of being trafficked. The violence inherent in sex trafficking inflicts

174  Mark Sherry such pain, trauma and injury on its victims that there is little chance to avoid such impairments. The chapter has also suggested that sex trafficking needs to be fully understood in its global context: it largely involves the exploitation of women from the Global South for the gratification of men from the Global North. Examining the debates around prostitution between Abolitionists and Pro-Sex Work advocates, the chapter also demonstrated that both these groups fail to sufficiently integrate disability. The failure of both these groups of feminist activists to explore disability-related trafficking, such as trafficking in the fetish industry, is regrettable and shameful. Likewise, the chapter has argued that the movement for sexual access by disabled people (largely disabled men) has also failed to take into account the issue of human trafficking. Masculinist discourses of sexual rights for disabled people which ignore the gendered dynamics (and human rights) of female victims of sex trafficking have no place in a movement founded on the principle of human rights for all. In terms of the activism needed to address this issue, it is clear that human trafficking needs to be placed higher on the radar of disability rights organizations. There are some positive signs: for instance, in the United States in 2017, the Human Trafficking Pro Bono Legal Center and the National Disability Rights Network signed a collaborative agreement to work more closely on the issue (Human Trafficking Pro Bono Legal Center 2017). But this rare collaboration is not enough – as this chapter has demonstrated, much more needs to be done.

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12 The onset of austerity in the United Kingdom and start of a disability activism Eleanor Lisney

For many people the onset of austerity in the UK started when the coalition ­government got into power in 2010. The 6 May general election failed to produce an overall majority for any of the country’s three main political parties and resulted in the first hung parliament in the UK in 36 years, which led to the first coalition government since the Second World War. This coalition was led by David Cameron (Prime Minister Zahari Richter 2010–2016) of the Conservative Party and Nick Clegg (Deputy Prime Minister 2010–2015) of the Liberal Democrats and they set out their programme for the government, including their intended changes to work and welfare (UK Government 2010). I was brought into activism by being asked to help organize the 3 October 2010 protest in Birmingham where disabled people took part alongside trade unionists and other activists (Disabled People Against Cuts 2010). Realizing the importance of social media, a blog, a Facebook group and a Twitter account were set up. I do not think any of us were aware it would be the start of a historical movement in disability contemporary history – it was the beginning of Disabled People Against Cuts. The immediate tasks at the time were preparing the logistics of a campaign and a rally. ‘Disabled People Protest’ was the term in use on the free Wordpress blog and Flickr account and the Twitter to this day is still @dis_ppl_protest; however, later the name of Disabled People Against Cuts (DPAC) was chosen. The first T-shirts – with ‘Cuts kill’ in bright red text on black background – were ordered from a stall in Coventry market. Our banner proclaimed, ‘Disability Rights/Cuts Kill’ with an upside-down black triangle. On that very wet day in Birmingham, tweeting and marching along with a few thousand protesters, including many disabled people, I realized very quickly what it meant and what we were starting. At that time, the core was only a handful of us at the demonstration under the ‘Right to Work Campaign’ with trade unionists. At the beginning of this tide of events I took as many photos as possible to capture what different disabled activists were doing, such as Mad Pride at the Speakers Corner in Hyde Park on 26 October, where they burnt an effigy of David Cameron, supporting the students picketing Nick Clegg, and joining the students’ protests on 24 November. There were very few of us involved in the loose group then. I ended up on platforms speaking with the likes of Mark Serwotka, the general secretary of the Public and Commercial Services Union, the trade union for

180  Eleanor Lisney British civil servants. At the time, I had no engagement with any trade union or political party. I was on a quick learning curve. I took on public speaking to big crowds – there was nothing to prepare me for that. I took the message on disabled people and the impact of cuts on us and delivered on that. My personal assistant/support worker was bemused at having to accompany me to some of these protests. It was not in the stated duties when I engaged him and yet I considered it as part of my work. I was living in Coventry (in West Midlands) at the time and all these events were happening in London – train fares were paid for from personal expenses. Being caught up in the movement with my fellow DPAC co-founders, we felt we needed to bring awareness to disabled people about the danger of the political environment, of a government that was driven by ideology and the fact that we, as disabled people, were targeted for cuts. Sunil Peck wrote in Disability Now (now defunct): Are people once more about to break out the handcuffs, the chains, the padlocks, the cans of red paint? With spending cuts apparently putting disabled people and government once more on a collision course, Sunil Peck asks what did the direct actions of the 1990s achieve and should we expect a return to those times of militancy? ‘Cuts kill,’ was the stark message from disabled campaigners who took to the streets in protest during the Conservative conference in Birmingham. Eleanor Lisney one of the disabled organisers of the rally, says that two disabled people have committed suicide because of cuts to their care packages and benefits. ‘We’re saying to disabled people don’t wait until you’re really up against the wall because of the cuts because it’ll be too late.’ We will have to wait and see whether the Birmingham demo turns out to be the first stage of a battle in a sustained campaign against the coalition government’s cuts but disabled people are certainly angry and there is a history of angry disabled people using direct action to fight injustice. It reached its height in the 1990s. (Peck 2010) Recently when I messaged Sunil to locate the article, he reminded me ‘how I pulled him up for bracketing DPAC with direct action groups and for missing the point that DPAC was about forging alliances with unions rather than resorting to chaining wheelchairs to railings and throwing red paint around’. Little did I know! I say this because the following years’ events have shown that disabled people with DPAC had to continue with direct action, such as with protests against the closing of the Independent Living Fund and other cuts. The history of angry disabled people using direct action to fight injustice continues. The Independent Living Fund (ILF) was a government-funded discretionary scheme which helped people who had high day and night care needs. Those helped under the scheme received a care support package jointly funded by the ILF and their local authority to help them live independently in the community rather than in residential care. DPAC certainly fought strongly against cutting of

Austerity and disability activism in the UK   181 the ILF (which closed in 2015) as well as organizing campaigns on the urgency of the social care crisis. In my activist fervour, right at the start of the austerity cuts, I had thought that if people were awakened to the crisis, they would react and cause an outcry against the cruel cuts and that the media would help disabled and disadvantaged people in this crisis. I attended Netroots UK Conference 2011 and enquired on the best way to get media attention. The conference was to bring together the new generation of left activists, working and discussing politics online, with the veteran institutions of trade unions and many more in between. The hope was that they could begin to build a new infrastructure to bring together campaigners and activists so they could learn from each other. The panel of journalists to whom I posed the question on capturing media interest were not too encouraging: headlines had to be prioritized on ‘newsworthy’ items and damaging benefit cuts affecting disabled people were not catching enough on their own merit. I was asked to speak on a video at the Guardian, ‘Cuts “taking disabled people back to Victorian age”’ (Lisney 2011). I am saddened that there has not been much change after seven years. During that time many people, including disabled people, said I was being an alarmist but an article in the British Medical Journal in 2017 revealed the seriousness of the cuts for individuals (Watkins et al. 2017). The Independent newspaper reported that, The Conservatives have been accused of ‘economic murder’ for austerity policies which a new study suggests have caused 120,000 deaths … The paper found that there were 45,000 more deaths in the first four years of Tory-led efficiencies than would have been expected if funding had stayed at pre-election levels. (Matthews-King 2017) When I look back, I realize I had gone headlong into an activism that was seemingly contrary to my first experience of working for disabled people as part of the only cross-Westminster parliamentary disability equality advisory group, Equality 2025 (from 2006 to 2009). We were meant to be the conduit between disabled people and the government of the day. This was where I met some of the most amazing disabled people. They taught me about disability politics in the UK and lots more. We were working from the Office of Disability Issues and, for my appointment term of three years, I travelled and met disabled people all over the country at regional meetings we held. It was a heady experience. It was very different a couple of years later when I had slight confrontations with the police and reported/tweeted being kettled for a brief time. Being kettled by the police, that is, to be confined as a protester with others in a small area as a method of crowd control during a demonstration, was a strange experience for someone who had never even had a parking ticket. We demonstrated again and again, joining in big marches such as TUC (Trade Union Congress) on 26 March 2011 and March for the Alternative, where I was in the front row of marchers (reported to be as many as 30,000 people). In that march, many disabled people

182  Eleanor Lisney voiced their disappointment and frustration as they were unable to be there physically. With help from other activists, we started an online protest message system where disabled people’s voices were added (as stickers) along with an online Google map. I think it was the first disabled online protest. We realized that the anti-cuts protests were here to stay for a while and we needed to have more people so we (the co-founders) organized the first DPAC conference, where a steering group was formed. Activism requires many different skills and practical stuff, such as opening bank accounts, getting funding and so on, has to be dealt with, which is much more involved than organizing a one-day protest.

Intersectional tensions Another memorable event for me in 2010 was the Million Women Rise rally where I was invited to speak on disabled women and domestic violence. I was also the access coordinator for that event. Million Women Rise is a march that ends with a mass rally at Trafalgar Square in London to raise awareness of male violence. I asked my friend, Michelle Daley, to speak with me at that occasion in Trafalgar Square. I noted the absence of the voices of disabled women – there is no lack of disabled women’s activism and voices but not on disabled women’s issues, such as domestic violence. Equally, as a disabled woman of colour, I realized the absence of the voices of disabled ethnic minorities. In 2012, I was asked to speak at a national conference on disability and strategy, ‘Re-thinking disability equality policy and practice in a hostile climate’. Again, I asked Michelle Daley to co-write a response from a black and ethnic minority and refugee perspective while I made the speech asking, In rethinking disability equality policy in a hostile climate, do we include refugees, the stateless and migrants? There is a serious erosion of our disability rights (and expectations) signed in the Convention of Rights for People with Disabilities. When I was interviewed on radio about access for disabled people, the interviewer opened the discussion by asking how in times of austerity at the moment, can we afford to have disabled access, are we being realistic to ask for expensive adjustments? Our rights as citizens and as humans are seen to be expendable and that goes across the board as disabled people in the ethnic minorities, women, older people, those in rural communities. As cuts slash benefits, and impact on services and wages of those who already earn a barely minimum wage (including their families) there is a scramble on what they can get to survive. I think we asked some pertinent questions of the disability community present in that room to consider: How do we ensure in rethinking disability equality that we include all voices – travellers, those in institutions including prisons, and those other excluded groups?

Austerity and disability activism in the UK   183 How about those who are citizens but do not know they have rights as disabled people? How do we make sure we include them? It’s hard enough as a disabled person to negotiate barriers and discrimination when you are a native English speaker but for those who struggle with the language and are unfamiliar with the system and bureaucracy – how do we make them aware that they have also a claim to disability equality? On the frontline, where Local Authorities are cutting back – how do we ensure that Black, Asian, and minority ethnic people are not left behind in the ‘personalisation’ process, in the maze of bewildering social welfare reforms? Resources are being cut savagely – do Disabled People’s Organisations who are struggling for their own existence include advocacy for those for whom English is not their first language? What happens to the practice of equality for all in this hostile climate? Are some disabled people being abandoned because DPOs are struggling themselves with the dwindling resources in terms of staff, time, finance and energy? We grappled with some of these questions and asked how we could address some of these issues. We gathered a group of friends – disabled women for the most part – to discuss the possibility of having a disabled women’s organization. Hence, Sisters of Frida was formed. It was a slow process but we wanted it to be intersectional from the start and to bridge the gap between disabled people and women’s organizations at the very least. We made sure we mentioned the intersecting oppressions which affect us as self-identified disabled women: as disabled, women, of minority ethnicities, and LGBTQI, young and old. I had the opportunity to say this at a WOW (Women of the World) event hosted at the Southbank in 2014. ‘Nothing about us without us’ – how often do we declare and hear that as disabled people? I’ve certainly carried placards and shouted the slogan on protests but tonight I want to turn it on its head. Disability intersects class, gender, ethnicity, race, religion, age, and sexual orientation – but are they always represented in the disability movement? I was told by a fellow activist that she was asked why Sisters of Frida is needed because the questioner feels discriminated as a disabled person but not for her gender. And my response was that she obviously came from a position of privilege – yes she is white, middle class and in a salaried job and unionised. And I assume she never had the experience of feeling trapped in an abusive relationship unable to leave because she was financially dependent and the refuges meant for women escaping from domestic violence were seldom accessible or supported for disabled women. To continue: Racism is embedded in the system and people who have never encountered it can never understand how insidious it can be. And they, yes, even friends, make assumptions and can say things like tokenism when you insist on

184  Eleanor Lisney representation and be condescending about your culture to an extent where it is too hurtful for that friendship to be sustainable. But most of all, the really invisible and voiceless are those women who have no recourse to legal services – for example, those whose identity documents are held by the abusers so that their residence rights cannot be proven. And how often do we hear about the ones incarcerated in residential homes/institutionalised which put them at more risk to be exploited and abused, hidden from view? Disabled women are discriminated against – by feminist communities, LGBT, faith communities because they insist on congregating in nonaccessible venues. And the segregation is also from the disabled people’s communities because they do not understand nor are they interested in other identities. Where do disabled women go to discuss the roles of being disabled lovers or mothers if they are given the opportunity of being girlfriend, wife or mother? And there are those whose sexuality is being denied or they are even sterilised (often presumed to be for their own good). And who knows how to support them when they are raped? A report by Professor Betsy Stanko stated that the rape of vulnerable women, especially those with learning difficulties, has effectively been ‘decriminalised’. [Newman 2014] I guess I am speaking about the need for intersectionality also when we talk about disability – that we have more than one identity and we ought to acknowledge that – and that we should acknowledge we need a space for disabled women. As disabled women, we need to listen to the different identities. And feminism needs to accommodate intersectionality too – speaking as a disabled woman of colour when I can be the only non-white disabled person/woman at the table I feel a double disconnect. I am sure some of you here know what I am saying. You stop wanting to engage as a form of self-protection. Sometimes we are so rooted in our own contexts – our own geographical, economic and social positions – that we forget to check on our own privileges. Yes, I acknowledge that even if I am a disabled, female immigrant of colour, I am privileged: I am educated, I can work my way around in English (not my mother tongue), I have travelled with two children and am self-employed. The austerity cuts which affect me personally are also happening globally. The turmoil on the global stage also reminds us that we cannot stop advocating for disabled women wherever we are. In 2014, I was asked to be part of a forum at NAWO’s (National Alliance of Women’s Organisations) fringe event at the End Sexual Violence In Conflict Global Summit. I raised this thought: It sounds like it’s far from the war zones and disabled women seem so much better here than what women endure in the war zones in conflict. But those women become disabled – emotionally, socially, economically,

Austerity and disability activism in the UK   185 psychologically, spiritually, physically and are sexually deprived – and as disabled women we share the same gender-based discrimination wherever we are globally. Research has shown that disabled women experience abuse at least twice as often as non-disabled women [Van Der Heijden 2017]. Women who acquire disabilities then have to pick up their lives when they face discrimination not only for their gender but sometimes also from other women, from their own family members. We are seen as scroungers, as needy and that we can’t/do not fulfil our roles as lovers, wives and mothers. So some disabled women are sterilized (very often said to be a form of family planning and also because menstruation is so messy) and disabled women live in fear of having their children taken away because they are not seen as capable to be mothers. (Barnes and Mercer 2010, p. 141) So: Disabled women should be afforded equality wherever they are as a human right – as enshrined in UN Conventions, especially CEDAW and the CRPD. Our fight as disabled women for Article 19, for Independent Living, is a fight for all disabled women so that we get included as women who have rights to be part of our communities, to be equal to non-disabled men and women. So when we campaign for human rights here for disabled women we are campaigning for all disabled women wherever they might be, globally, in solidarity.

International reporting on austerity I was fortunate enough to be part of the CEDAW Working Group coordinated by the Women’s Resource Centre (WRC), going to Geneva in 2013. I went for training and the meetings it involved. The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), adopted in 1979 by the UN General Assembly, is often described as an international bill of rights for women. Consisting of a preamble and 30 articles, it defines what constitutes discrimination against women and sets up an agenda for national action to end such discrimination. We will be engaging in the process again in 2018. Recently I was asked to talk on CEDAW for disabled women by the WRC. In 2013, we had a CEDAW General Recommendation on disabled women. In our report, we pointed out the impact of austerity on disabled women and agreed with the other women’s organizations that without legal aid, there was no access to our rights. There is no point to conventions if we do not have support to access those rights enshrined in international agreements. We can categorically say that the UK has not followed any of the recommendations of the 2013 CEDAW committee. In 2016, we went to a United Nations CSW event. The Commission on the Status of Women is the principal global intergovernmental body exclusively dedicated to the promotion of gender equality and the empowerment of women. I took part in

186  Eleanor Lisney three side events – two of which (with Women Enabled International and Women with Disabilities India Network) were with disabled women from other countries. Again, I pointed out the impact of austerity cuts on disabled women in the United Kingdom. There are many stories that evidence how the cumulative impact of benefit cuts to disabled people, women and those of ethnic minorities are very harsh and directed to the least advantaged in our society. Stories such as these: Tracey is a single parent in her late 30s, unable to work because of disability. Over the past six years she has experienced cuts to disability benefits, housing benefit and council tax benefit that have left her struggling with living costs. ‘I’ve cut everything back as much as I can. I don’t smoke, I don’t drink, I don’t go out any more,’ she said. (Sodha 2016) I think the shock for disabled people from other countries is not that disabled people are having a hard time, but that we are one of the richest countries in the world with a strong disability movement and activists and that we are targeted for cuts seemingly because of the ideology of the conservative government. Our task in the international community is to show the relentlessness of austerity on our community intersectionally. As Zoe Williams writes, it is the cumulative impact of benefit cuts that is shocking: Possibly the shock of seeing all these measures in one place, imagining them hitting one household; from one direction, the bedroom tax, cuts to housing benefit, cuts to council tax benefit, cuts to mortgage interest benefit and higher rents. Whatever punch you manage to avoid (say the bedroom tax, because you’re renting privately) will hit you from some other direction (in higher rents). Now calculate benefits lost in sanctions, as claimants fail to look for jobs because they had some ‘bogus’ other engagement, such as chemotherapy. Adult and children’s social care have been greatly reduced, leading to stricter eligibility criteria and means testing. Personal budgets have been cut. And don’t forget that all benefits are worth less, relative to living costs, because of indexation changes. As a result, disabled people are losing more than any other group, not by some piffling, coincidental amount, but by a factor of three or four; by thousands of pounds a year. (Williams 2014) My own example, a composite story of disabled women I know, is of a single disabled woman, let’s say her name is Mary. She has mobility issues (for which she receives Disability Living Allowance (DLA) and has a Motability adapted car), she lives in a rented council two-bedroom, ground-floor adapted flat, and she holds a job (for which she receives Tax Allowance and Access to Work support). She was getting on reasonably well until she had a brown envelope

Austerity and disability activism in the UK   187 in the post with a letter from the Department of Work and Pensions to say she needs an assessment for Personal Independence Payment (replacing the DLA). She does not have enough points (the PIP works on a point system) so she fails her assessment. She will be appealing but, in the meantime, she has lost her benefits. Her Motability car is claimed back so she cannot get to work. She loses her job and as a consequence is in arrears with her rent. They are also demanding bedroom tax as she has two rooms but she cannot downsize because the flat was adapted for her and there are no other accessible properties she can go to. She cannot move out of the area easily because her care package from her council is not portable so she gets evicted and becomes homeless. This is not an uncommon scenario and many have despaired and committed suicide due to desperation, for example, the case of Stephanie Bottrill in Solihull (Birmingham Post 2013).

Feminism and dis/ablism I recognize disablism, discrimination against disabled people, and its impact on my day to day life. I would like to believe I am part of the disability movement in fighting oppression. I would also like to include myself in the feminist movement but I do not always feel fully included in either. Sometimes disabled women feel that disabled women are marginalized in feminism in that the issues of oppression that disabled people face are not addressed by the larger feminist movement. I know of disabled women who do not see themselves as discriminated against as a result of their gender but have experienced instances of exclusion when it comes to access to feminist events, even if they might not be seen to be overtly feminist. Sisters of Frida are getting better recognized and we are invited to be speakers, to take part in round tables and be part of the discussion. Many people may see disabled people as embodiments of their medical conditions, and this medical model discriminates against the disabled person. Disabled women still have the stigma of being seen as asexual and not recognized as being women, and therefore are perceived not to partake of the rites of passage of being lovers, wives and mothers. We are still viewed as incapable of those ‘feminine’ roles and disabled mothers risk having their children taken away – as in this case in Milton Keynes: The family court judge ruled that the child must be taken from the care of his disabled mother claiming her disability made it impossible for her to meet her disabled son’s needs by herself, and the level of local authority support she would need would be too extensive. Judge Antony Hughes dismissed a suggestion of ‘social engineering’ … The judge, who said the boy could not be identified, said Buckinghamshire County Council wanted to take the youngster into care. He ruled in the local authority’s favour, approved a care plan and said the boy needed a ‘permanent substitute family’. (Harley 2015)

188  Eleanor Lisney This is so common that many disabled women, according to the women’s network discussions on disabled women and domestic violence, do not report domestic violence to the police because of the fear of having their children taken into care or sometimes into the primary care of their non-disabled partner, the perpetrator. Disabled women also feel isolation and loneliness due to the lack of mainstream acceptance and access to events, for instance, at the women’s marches. Sisters of Frida has insisted time and time again on access to be built into such events and we do have some success with women’s organizations we work with. We are asked to talk on subjects such as sexual harassment and the #MeToo campaign and we have to formulate our answers because we are not used to being asked opinions such as these. What would be considered as sexual harassment in a public space when you are not subjected to wolf whistles, but is being dismissed from such attention a form of sexual harassment? When it becomes a form of humiliation and rejection? And yet disabled women are more likely to be sexually violated because perpetrators realize that they make vulnerable witnesses and that police are less likely to prosecute if there are disabled people involved. If I have questions for the feminist movement, it is that I would like to see discussion not just on unpaid carers having to sacrifice themselves to care for family members (often the same carers are also disabled) but also on those disabled women who are left to linger in care/residential homes, being abused and left in squalor. I would like to have discussions on solutions for our older and disabled women, including learning disabled women, so that they also have a place in the feminist movement. I would like to make an inclusive feminism so that it’s not just about the gender pay gap but also about those women who would love to work, have relationships and enjoy life to the fullest, and have aspirations just as any non-disabled woman but are not given a chance in this capitalistic, misogynistic, disablist world. At some point, I was asked the part that feminism played in my activism. Lani Parker (2017) asked me if I was a feminist in her podcast: LANI: 

We’ve talked about intersectionality a bit and identity politics, and moving towards the movement stuff. I was wondering, and we talked about bringing in women’s issues and race issues. I was wondering, what does feminism mean to you? Because you’re a very strong feminist. ELEANOR:  Thank you. I’m not sure I’m a strong anything. I’ve not really studied feminism as a theory or gone to any feminism classes or courses, or anything like that really. I think for me, feminism is being able to do what you want to do when. Your gender shouldn’t limit your opportunities. Having said that, I realise that it’s not, even if you think you’re a feminist, there are a lot of things in this world that put a stop to your choice, because it’s just easier to conform. I know I got married quite young, and if I was a feminist, if I wasn’t a disabled person, I think, thinking back, I might not have got married at that age. And I think I got married then because I had this internalised idea of myself as not being worthy. And I thought that if I didn’t marry the first person who asked me, I might never get another chance. Whereas I don’t

Austerity and disability activism in the UK   189 think that I would think that if I was a non-disabled woman? So that’s why I’m saying that your choices are compromised, and that’s the intersections they’re kind of in. I do not think my feminism, if you can call it that, is what you would consider the type of feminism you consider in the west. I grew up in Malaysia in the Chinese diaspora where my neighbours were South Asians and Malays and I was used to coping with different languages and faiths. My consciousness of being a feminist grew in a different culture where patriarchy is very strong and women had a restricted status. Some of my friends’ fathers had a few wives at the same time and this was not uncommon. We had interracial tensions that we grew up with and that we had to learn to deal with. Our sense of self is compromised and yet there is a great deal in that grounding that gives me strength. It is the multi-cultural/ ethnic understanding which leads me to weave the influences in my life together. I have compared the experience of an intersectional existence to being invited to a meal with many tables but not being given a proper place at any of them so you are always an outsider. I mention all these cultural type references because it is partly what motivates me to be the activist/campaigner I am today. I want to be part of the process of informing other disabled women of colour about choices and alternatives. We do not have to conform to stereotypes, either those of our own communities with strong patriarchal overtones or here in the west where it might be more nuanced. Feminists can be judgemental and insistent that we conform to western ideals of feminism. I hope that because I have my experiences in either world, I can facilitate other women in their search. It is not an easy path when you juggle cultures – you can end up feeling alienated from all. Having said that, I also understand the different journeys – just as I understand, in a different context, that it can take time to take in disability politics. I was slow to understand feminism. All my young life, I was led to hanker for a ‘normal’ life – to be a real woman, desired, and be able to fulfil some feminine ideal.

Conclusion/Brexit This austerity drive does not look as though it has an end in sight, now writing at the start of 2018. As an activist, I do not know how it will end. I think we have to move our strategy away from just fighting against cuts but I do not know how to steer it. I am stressing the need to make our struggle include the intersections, to fight together, to move out of our silos. This has gained more urgency with the Brexit referendum outcome. The austerity measures will be more acute if the UK loses even more economically by leaving the European Union. Of huge concern is the lack of clear disability laws post-Brexit to provide the same protection as in the Accessibility Act, which is seated in EU law. This Act builds human rights protections into future trade agreements and enhances EU disability rights law. The European social fund provides training and support to tens of thousands of disabled people which will be lost when we leave the EU. Along with the

190  Eleanor Lisney important work of supporting disabled people into employment, related opportunities will be lost. I am also concerned because the provisions of independent care living are massively underpinned by the personal care provided by European workers here in the UK. While there is a discussion about retaining highly skilled people, such as academics working in research for universities, too little has been debated about the scale and significance of this essential workforce and its importance in enabling disabled people to live an independent life of good quality. Brexit will have an impact on the supply of personal care assistants as they will have to leave the UK. My concern is if that support is lost, there will be a slide back to people returning to institutions, leading to regressive outcomes or living at home without adequate support. We are still grappling with the possibility of losing rights we have as European citizens. These are interesting times we live in. In 2017, the examination by the UN Committee on the Rights of Persons with Disabilities was declared by the UK rapporteur, Mr Stig Langvad, to be ‘the most challenging exercise in the history of the Committee’. Mr Langvad raised deep concerns about the UK Government’s failure to implement the rights of disabled people. He also noted the government’s lack of recognition of the findings and recommendations of the Committee’s inquiry, which found ‘grave and systematic violations of disabled people’s human rights’ (OHCHR 2017a; see also OHCHR 2017b). The Disability News Service reported that, The equality watchdog (Equality and Human Rights Committee EHRC) has asked a barrister to examine whether there needs to be a legal right to independent living for disabled people, because of concerns that their rights to choice and control over their lives is being ‘eroded’. (Pring 2017) As for disabled women, austerity cuts deep into services and access to independent living, which intersects with other barriers. Funding for specialist services are drying up as are refuges for those affected by domestic abuse, and the loss of legal aid has meant that there are curbs to access to justice. We battle to keep existing disability and women’s rights from being eroded by an imposed austerity in a country that is in the top ten of the world’s biggest economies (Harari 2017).

References Barnes, C. and Mercer, G., 2010. Exploring disability, 2nd edn. Cambridge: Polity Press. Birmingham Post, 2013. Grandmother blames ‘bedroom tax’ for her death in suicide note. 13  May. Available from: http://www.birminghampost.co.uk/news/local-news/ grandmother-blames-bedroom-tax-death-3906294 [Accessed 29 March 2018]. Disabled People Against Cuts, 2010. Join us to protest at the Tory Party conference on 3rd October in Birmingham. 1 September. Available from: https://disabledpeopleprotest. wordpress.com/2010/09/01/join-us-to-protest-at-the-tory-party-conference/ [Accessed 25 March 2018].

Austerity and disability activism in the UK   191 Harley, N., 2015. Judge removes child from disabled mother. The Telegraph. 3 October. Available from: https://www.telegraph.co.uk/news/uknews/law-and-order/11842893/ Judge-removes-child-from-disabled-mother.html [Accessed 29 March 2018]. Harari, D., 2017. Is the UK the world’s 5th or 9th largest economy? Full Fact. 19 May. Available from: https://fullfact.org/economy/uk-worlds-5th-or-9th-largest-economy/ [Accessed 30 March 2018]. Lisney, E., 2011. Eleanor Lisney: Cuts ‘taking disabled people back to Victorian age’ – video. The Guardian. 9  May. Available from: https://www.theguardian.com/commentisfree/ video/2011/may/09/cuts-disabled-people-video [Accessed 25 March 2018]. Matthews-King, A., 2017. Landmark study links Tory austerity to 120,000 deaths. Independent. 16 November. Available from: http://www.independent.co.uk/news/ health/tory-austerity-deaths-study-report-people-die-social-care-governmentpolicy-a8057306.html [Accessed 25 March 2018]. Newman, M., 2014. Rape has been ‘decriminalised’ for the most vulnerable says senior Met adviser. The Bureau of Investigative Journalism. 28 February. Available from: https:// www.thebureauinvestigates.com/stories/2014-02-28/rape-has-been-decriminalisedfor-the-most-vulnerable-says-senior-met-adviser [Accessed 25 March 2018]. Office of the High Commissioner for Human Rights (OHCHR), 2017a. Committee on the Rights of Persons with Disabilities reviews report of the United Kingdom. 24 August. Geneva: United Nations. Available from: https://www.ohchr.org/EN/NewsEvents/ Pages/DisplayNews.aspx?NewsID=21993&LangID=E [Accessed 28 September 2018]. OHCHR, 2017b. CRPD – Convention on the Rights of Persons with Disabilities, 18 Session (14 Aug 2017–01 Sep 2017), United Kingdom of Great Britain and Northern Ireland, Concluding observations. CRPD/C/GBR/CO/1. Available from: https://tbinternet. ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fG BR%2fCO%2f1&Lang=en [Accessed 29 March 2018]. Parker, L., 2017. Conversation with Eleanor Lisney on disability, intersectionality and more. Sideways Times [blog]. Available from: https://sidewaystimesblog. wordpress.com/2017/02/25/conversation-with-eleanor-lisney-about-disability-andintersectionality/ [Accessed 29 March 2018]. Peck, S., 2010. Direct action! Life on the streets. Disability Now [blog]. 7 November. Available from: https://disabilitynow.wordpress.com/2010/11/07/direct-action-life-onthe-streets/ [Accessed 25 March 2018]. Pring, J., 2017. Equality watchdog seeks legal advice on possible right to independent living. Disability News Service. 30 November. Available from: https://www. disabilitynewsservice.com/equality-watchdog-seeks-legal-advice-on-possible-right-toindependent-living/ [Accessed 29 March 2018]. Sodha, S., 2016. Austerity effect hits women ‘twice as hard as it does men’. Observer. 20 November. Available from: https://www.theguardian.com/society/2016/nov/19/ austerity-women-men-low-income [Accessed 29 March 2018]. UK Government, 2010. The Coalition: our programme for government. London: Cabinet Office. Available from: https://www.gov.uk/government/uploads/system/uploads/ attachment_data/file/78977/coalition_programme_for_government.pdf [Accessed 28 September 2018]. Van Der Heijden, I., 2017. What works to prevent violence against women with disabilities. UK Department for International Development. Available from: https://www.gov. uk/government/uploads/system/uploads/attachment_data/file/337954/Interventionsabuse-against-WWD-W.pdf [Accessed 28 September 2018].

192  Eleanor Lisney Watkins, J., et al., 2017. Effects of health and social care spending constraints on mortality in England: a time trend analysis. BMJ Open, 7 (11), e017722. Williams, Z., 2014. It’s the cumulative impact of benefit cuts that is shocking. Guardian. 19 February. Available from: https://www.theguardian.com/commentisfree/2014/feb/ 19/benefits-disability-cuts-welfare-changes [Accessed 29 March 2018].

13 Queer-crip.blog A virtual ethnographic comparison of social media movement-building techniques used by queer and disabled activists Zahari Richter I began my experience of disability activism mobilized by the Autistic ­community on the internet in the final two years of getting my undergraduate degree in English. The days of my initial induction into disability politics came about from a mix of my experience of and use of critical disability theory in college debate and from my previous involvement in various political venues of varying radical content, from anti-war protests in high school to campaigning for Democratic politicians locally (for my county congressional representative, Chris Murphy) and nationally (the 2008 Obama campaign, which mobilized so many others of my generation), and including a brief stint in New York at the Occupy Wall Street encampment. The dynamism of Autistic disability politics in the USA was also something that swept me up as an early student of disability studies. Autistic-led disability rights organization Autistic Self Advocacy Network became publicly known after a successful letter-writing campaign against the major Autism non-profit Autism Speaks for its billboards using the metaphor of a kidnapping to warn against an Autism epidemic (ASAN 2018).1 I joined the Autistic Self Advocacy Network in 2008 and briefly functioned as a chapter leader for the organization for one year. Following that experience, I took my activism to the internet, publicly and semianonymously, blogging under a series of different internet monikers and engaging in various types of blog-based protests, such as flash blogging, to advocate for Autistic rights. This chapter is in many ways a homage to honour the internet disability bloggers I have known and to honour the vital work that is still being transmitted through blogs, memes, videos and other non-formal delivery mechanisms.

Title, definitions and methodology Definitions I call this essay ‘Queer-crip.blog’ to help highlight how both LGBT (as used by LGBT Studies historians John D’Emilio (2012) and Michael Bronski (2011)) and disability politics have enjoyed a second wave of renewed activist commitment on the internet and especially on social media. My own experiences of disability politics, by my third or fourth year of involvement, became impossible to articulate as

194  Zahari Richter separate from my experiences with gay, lesbian, bisexual and transgender politics. What I hope to do here is to critically consider the work of media scholar and Marxian theorist Manuel Castells, who has written a multitude of works about internet blogs and other internet forms of social movements but who has entirely ignored disabled internet culture. Some of my past work has focused exclusively on Autistic blogging culture, but this piece will consider several techniques of disabled and LGBT internet movements and their potential benefits and drawbacks as well as my own experience with them. In part in order to specify where this chapter departs from other analyses, it will be necessary to define my stance in this chapter in regard to several key terms. Recently, Queer theories have predominated in the literary humanities and as such have introduced the language of queerness as a deconstructive analytic. However, in deconstructing sexuality and political economy, Queer theorists abnegate historicity. This chapter intentionally uses the language of ‘LGBT’ in order to ground my social movements-oriented analysis in the histories of resistance that have taken shape most prominently in US politics, such as the Stonewall riot, AIDS drama and the more recent transgender tipping point. In returning to lesbian, gay, bisexual, transgender social movement history, this chapter hopes to avoid the dematerializing tendency of Queer theory to flatten the sediment of histories of struggle. Methodology In addition to Castells’ social movement approach being immensely influential on how this research was conducted, Christine Hine’s (2000) book Virtual Ethnography makes the theoretical argument for the internet as a place as opposed to a text. Drawing on Hine, this chapter engages the internet as a series of literal places of social organization. Each website is a location where cultural artefacts in the form of text and other media, as well as voices from community members, are present. Hookway’s ‘Entering the blogosphere’ (2008) offers the initial methodology for this chapter’s reading practices. For Hookway, ‘trawling’, a practice of passive meandering, is essential to engaging with websites and searching for important social scientific data. Locating each type of social movement aesthetic as well as a movement-building tool in this piece required ‘trawling’. After the step of trawling, later steps of analysis involve filtering, deep analysis and institutional mapping. In the filtering stage, crucial pieces of the online aesthetic are engaged with separately from the rest of the page such that they can be analyzed with specificity as far as their meaning in the communal context of the internet content. During filtering, specific pieces of the blog, poem or meme are engaged with more deeply and on their own terms. In the deep analysis and institutional mapping parts of the virtual ethnographic methodology, the connection of media to both institutional presumptions and to the resistant agency and intention are considered. This is how I analyze how queer and disability media forms challenge and interrupt but also negotiate with institutional logics, such as those of capitalism, patriarchy,

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heteronormativity and humanism. Media is a display of cultural resistance and of cultural negotiation; it is both a social location or forum for social activities to occur and a text with its own inner life. The in-betweenness of the blog is precisely what I hope to highlight and also what makes these theories ‘queer’.

Internet social movement analysis and identity politics In his landmark work on internet social movements couched in identity politics, The Power of Identity (1997), Castells examines religious activists, environmentalists, feminists and zapatistas. Castells’ social scientific theorization sorts these groups into the three categories of ‘legitimizing identities’, ‘project identities’ and ‘resistance identities’. Legitimizing identities are introduced by the dominant institutions to ‘extend’ and ‘rationalize domination’. Resistance identities are generated by marginalized groups to fight power. And project identities refer to when social actors build an identity to redefine their position in society (Castells 1997, p. 8). While Castells does not analyze disabled activists and their internet projections, it is clear that internet disability activism could easily be said to fit into any of Castells’ categories. However, Castells’ work in The Power of Identity does not consider a fourth possibility for the making of online identities: what I would call ‘survival identities’. ‘Survival’ is suggested here as a hybrid between the ‘project’ identity and the ‘legitimizing’ identity, because survivalist identities often use tactics that legitimize in order to maintain a base-level existence. Thus, because survivalists are tactically conservative, they are not disruptive to society but they do create a way for themselves to exist longer in some state of subsistence. In the theory of homonormativity offered by Duggan (2004), these problematizations are used as part of the theory of how neoliberalism maintains itself – through a desperate bargain offered to marginalized, isolated social groups: accept conservative tactics in favour of quick but shallow victories. Several of Castells’ chapters in his The Internet Galaxy (2004) dote on the concept of the virtual community. I will argue that the layer of anonymity provided by networked societies and communication aid the growth of alterity cultures. Differences that are suppressed in the company of peers or superiors are discussed easily in the feeling of distance offered by the internet. The layer of neutrality that is offered by online mediums could have been predicted to increase the power of normally stigmatized communities through allowing conversation about personal phenomena to go uncensored by informal or formal reprimand. Castells does not negate such a possibility; in his chapter on internet communities, he points out that for many populations, networks are substituted for geographic communities (Castells 2004, pp. 116, 188, 207) In the case of disability and queer communities, which have no specific spatial central location, the internet fulfils the central role typically afforded to specific ethnic historical sites. Networked deviancies discussion cultures allow for the expansive growth of responses to and uses of formerly insular language regarding specific identity formations and the invocation of those formations in subcultural venues. Internet  devices have been useful for the expression of ‘outrage’ and ‘hope’

196  Zahari Richter (Castells 2012) and the concentrations and projection of such affects or passions across digital communities and cultures, but they have also represented solutions unto themselves for logistical difficulties had by groups like Autistic activists in attempting to locate one another in person. Other notable internet-based disability communities include psychiatric survivors, health disability communities, cerebral palsy communities, stuttering communities and general learning disability communities. All of such internet manifestations of disability discussion are heavily influenced by the kinds of publics in positions of identification-with or in positions of treatment decision-­making about such diagnoses. For example, many learning disability communities are predominantly populated by parents who are given the treatment decision-making options. For disability communities where the treatment trajectory occurs within adulthood, the population of its internet subcommunity will have more adults, but this does not say anything reliable about their level of political awareness. In The Power of Identity, Castells discusses the rise and continuity of LGBT social movements in the context of feminism and even considers both movements as connected to the weakening of the patriarchal family unit and the degendering of institutions globally. His argument seems to conflate LGBT identity with the goal of transformation, whereas early LGBT activists, such as those involved in the Stonewall riots and elsewhere, were merely trying to survive or keep themselves safe from extended oppressive overreach by the moral and political security state of the time. Castells’ arguments place LGBT organizing as merely a project identity, but my argument is that such a positioning is overly optimistic. LGBT culture is chronically impoverished by its existence mostly on the margins of heterosexual cisgender society. The only defiantly pro-LGBT organizations or webpages are either medical, activist or pornographic. Examples do not exist of proliferating models of post-patriarchal life for contemporary LGBT people outside of the patriarchy. LGBT people must form alternative communities in order to survive because the condition of their oppression is one of exclusion. The content of LGBT internet pages is a mix of cyber-begging (using one or more popular open platforms to fund vital things like escapes from abusive situations and gender reassignment surgery), hook-up culture, cooperative support (something Castells spends time on in Networks of Outrage and Hope (2015)) or shared enthusiasm, as well as mobilization for causes or use of media to spread a sense of openness and comfort with basic LGBT concepts. All four of these types of social media communication might well be divided into ‘project’, ‘resistance’ and ‘legitimizing’ but it is also notable that prior to social media, these resources might only be available through oral culture in an unevenly developed form. The universality of social media means that existing strategies and struggles are continuously shared, reproduced, mimicked and alternated in differing but linked social networks and that individuals have the possibility of freely plugging into such survival networks in certain fashions when conditions are ideal. When conditions are not ideal, this very same system can spread homophobic attacks from one location to others or can spread misinformation that poisons potential efforts at using social networks for survival.

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I will now develop an indexing of the tools, one by one, that are used by social media activists in disability and LGBT communities. As this analysis has virtual as well as auto-ethnographic elements, I am calling the data collection methodology ‘auto-virtual ethnography’ as it pertains to the ethnography of my researcher’s activist network as well as past activist networks. My most familiar unit of analysis is the blog, which was the topic of my Master’s thesis entitled ‘@utism: (re)negotiating collective identity in the Blogosphere’. In this index of internet activist tactics, I will approach the serial blog, the blog essay, the flash blog, the poem/performance blog, the meme and the webcomic.

The blog Jodi Dean (2011) describes blogs as displaced mediators that maintain the circuitry of communicative capitalism. Dean does not completely dismiss the possibilities of blogs being useful for social movements that seem at least aesthetically to be resisting capitalism. My argument for queer-crip blogs as survivalism does not stray far from Dean, but my suggestion of how blogs circumvent communicative capitalism is that some activists do use blogs to make public messages that could not be communicated by any other medium, either because of limits placed upon formal mediums, the low readership across boundaries of youth zine culture, and the limited valence and vocabularies of academic mediums. Mia Mingus’s blog Leaving Evidence (2018), for instance, has quietly revolutionized the disability studies world from the outside in; other web bloggers such as Kay Ulanday Barrett (2018), Christine Miserandino (2016), Mel Baggs (n.d.) and a host of other usually poor and low-income disabled activists have used the personal medium to present theories of justice outside of the political norms of academia, politics, law and the radical scene. Such authors, often excluded from major institutions, continue to exist through a vulnerable patchwork of cultural organizations, nonprofits, sympathetic universities, conferences and blogs. In my work, I emphasize a distinction between smaller serial blogs and ‘thinkpiece’ blogs or blog-essays that make a complete point in a short space. The thinkpiece blog or the blog that makes a complete argument is the most easily appreciated in the Web 2.0 world of Facebook and Twitter sharing. A complete work can be shared, consumed and commented on in a short period of time by nearly any reader. A serial blog is aimed at a loyal few who follow the blogger for a long period of time. Within the activist world, a thinkpiece blog offers the potential for instant appreciation by an already-allied community; messages can be disseminated to supporters and non-supporters. By now, the logic is already tired for many, but the blog exists to help activists share their political ideas.

The flash blog During my time as an Autistic internet activist, the flash blog, a social media activist technique in which one person would make a huge meta-blog website for many bloggers to blog on the same issue on the same day, was used repeatedly. Autistic acceptance flash blogs would flood the internet with blogs celebrating

198  Zahari Richter Autism; others would call attention to one particular problem, such as Google’s search suggest, when the word ‘autism’ came up as referring to something violent and insulting. These efforts did have some effect in that some of our blogs would make it to more public venues when done together. This strategy has limited application for getting a group of individuals’ usually ignored writings to highlight a message and be heard. Flash blogs or planned group blogging events scheduled for specific dates and topics have been used repeatedly to address different problems with the current conversation about disability. The most common topic for flash blogs and the specific community that has made use of them most often is the Autistic community. Between the years of 2010 and 2017, I took part in several flash blogs. The general structure involves the coordination of many different bloggers’ separate work on their own blogs which is later assembled and published together. The technique is most useful for increasing the visibility of specific voices and messages about the topic in question. One available example of the flash blog form can be located at http://thisisautismflashblog.blogspot.com/. The ‘This is Autism’ flash blog (2013) has as its heading the stated goal of ‘tell(ing) the world what Autism is in the words and works of Autistic people and those who love and support them’. The blogs posted on the website define Autism in a multiplicity of counterhegemonic ways and are also a collage of many blogging styles that are woven together with one theme. The flash blog, thus, is also richly hash-tagged; utilizing the keywordism of Google searching to attempt to change what types of voices are given greater headlines. In the age of Google hits linked to repetition and frequency, collective speech allows for a greater degree of amplification for otherwise unheard voices. Another element of the flash blog is the use of a blogroll and repetition to repeatedly intermix many voices at once and increase the views of any single blogger with audiences courted throughout the entire blogging community.

Poem/performance blog Erin Schick’s ‘Honest Speech’ is hosted on multiple forums on the internet, including Youtube.com, didistutter.org and viral progressive campaigning website Upworthy (Schick 2014). Schick’s poetry is a useful example of both the queer-crip ethos of survival in internet communities and also of the impact of poetry performance intermediality tactics used by disability activists. Schick’s own poesy in the piece uses the image of owls that rely on their unique cries. This forms the basis for Schick’s repetitious verses claiming the stutter as inseparable from who they are. After noting the particularity of owl cries for its survival, the uniqueness of the stuttering sound for survival comes into relief. Schick emphasizes the way in which her stutter makes her unique while showcasing it, spending extra time on the first syllable of tzatziki. Another element of Schick’s ‘Honest Speech’ video is its tactical value for disability social movements. Schick’s poem has a distinct value in revealing visually and auditorily the idiosyncratic life of a stutterer. As Schick’s onscreen

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performance reveals, stutterer-identifying people are not in constant performativity of their stutter yet may still find it a large part of their being. Furthermore, Schick’s performance emphasizes how shameful difference can be transformed into prideful uniqueness. In the refrains of how the stuttering self follows her around, Schick can represent the shame of disability stigma without internalizing it; instead of accepting the stickiness of shame, the poem juxtaposes it with pridefulness.

Webcomics Transgender webcomics such as Trans Girl Next Door (Transgirlnextdoor.com 2018) and Manic Pixie Nightmare Girls (2018) are successful in increasing knowledge about and activism around their gender minority communities through chic and clever comics that use image and text to both share the survival plight of the transgender subject in informational capitalism and share basic knowledge about trans issues with friendly onlookers. Comics take advantage of multimodality to assist audiences in visualizing and contextualizing transgender existence in its frustrations and its euphorias. Comics also use language that can explain and place in critical context the images that describe and show everyday realities but might be unexplainable or beyond knowledge without the additional element of text. Such multiple openings for understanding make transgender webcomics more powerful and wide ranging than political speeches on transgender rights or heady transgender studies philosophical texts.

Memes Memes are an unusual and informative technology for social justice-based organizing. Memes can be regarded as a media singularity: multiple meanings are compressed into simple images accompanied by small amounts of text. Memes are powerful in their anonymity and simplicity, but can also be misinterpreted or, worse yet, become vectors for dreaded ‘fake news’. In the context of queer and crip methods for networked collective survival, Facebook pages such as Queer Memes (www.facebook.com/ourqueermemes) and Chronic Illness Cat (www.facebook.com/ChronicIllnessCat) offer examples of meme pages that reliably produce queer- and crip-affirming meanings. One example could be found in a meme featured on Queer Memes that shows a Tumblr post using the name ‘daddy long legs’ to make a joke about the implicit kinkiness of many scientific names of animals. Another example shows a wheelchair user whose wheelchair is decorated with a rainbow flag with the text ‘queer disabled people exist and deserve the same safety and access as abled queers’. Queer Memes is then a meme page that uses the tactic and media of the meme to disseminate a wide range of inclusive, comical and playful images all coming from a perspective of sexual, gender, ability and other difference. In contrast, Chronic Illness Cat displays an image of a feline face with text around it, usually about

200  Zahari Richter conditions of impairment. In such memes, the cuteness and snuggliness coupled with the non-verbal communication indeterminacy of the feline demonstrate the position of having a difficulty to bear that is met with shock and discomfort or confusion, but only upon being asked. The opposing feelings of snuggly confusion on the part of Chronic Illness Cat and energetic, fast-paced variation and playfulness on the part of Queer Memes together when juxtaposed reveal the tremendous range in aesthetic and style of meme culture. Queer as an idea is pliable and playful and applies to a group that had been long turned into monsters. Chronic illness, even in the most empowering disability studies reading, is still grievously uncomfortable and inconvenient. As such, the two memes show distinct spectrums of activism, one being utopian in its wide playful span and the other being merely reparative (and as such, originating in negativity) in that it focuses on issues of oppressive neglect caused by the unequal distribution of care.

Postlude I have aimed to portray a variety of internet media tactics utilized by disabled and queer social movements to both oppose ableist ideology and to compensate for conditions that cause disabled queer life to be neglected. The use of the internet platform for self-promotion is not unique to the disability community, but Castells’ (1997) argument that heavy users of the internet are those who are denied other social options additionally holds true. We can interpret queers and disabled folks as those who have been denied traditional social connections. Queer-crip usage of the internet is often more passionate and desperate because local communities in some areas, such as the suburbs, can be extremely homophobic. In queer social media, stories are told about gay couples who met their partners on social media or the internet and then moved, in some cases across the country, to unite with those lovers. In the disabled world, stories are different, but equally meaningful. As an early Autistic activist, just through blogging I briefly worked with a series of older Autistic activists as well as parents of Autistic children to blog together and chain our blog promotion together. This united front did not last long, but my membership in it as an activist blogger led to another activist paying for my ticket to a major Autistic-run conference. The experience using a blogging network was breathtaking, but it was temporary, as the frequent ideological debates in such communities tear people apart and split our clan. Even if community and social movement unities are temporary in the internet medium, this does not invalidate social media as a powerful mechanism for a survivalist, global, networked identity community, which can take a stand on issues that matter greatly. The temporal nature of online communication places it between the longevity of some written texts that are preserved and the immediate forgetting of oral communication in the era when oral memory is forsaken. This position of partial immediacy and partial longevity places the internet medium in a position to subvert dominant epistemic orders. The importance of convincing internet social movement tactics will only increase in future decades. On another note, the

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independence of internet content is seriously at stake. Internet technology giants, such as Google, Facebook, Twitter, Amazon, Apple, Microsoft and several others, control the market and control the internet to major degrees – worse yet, internet service providers are the slumlords gatekeeping everyday people’s access to the internet. To remain revolutionary, queer and crip content must find independent servers and escape co-optation by either private corporations or the state.

Note 1 Autistic Self Advocacy Network is still operating at the time of writing. They participate in various legislative tactics. Autism Speaks is an international non-profit that addresses Autism primarily as a defect that needs to be cured.

References Autistic Self Advocacy Network (ASAN), 2018. Our history. Washington, DC. Available from: http://autisticadvocacy.org/about-asan/our-history/ [Accessed 28 September 2018]. Baggs, M., no date. About. Ballastexistenz. Wordpress. Available from: https:// ballastexistenz.wordpress.com/about-2/ [Accessed 1 October 2018]. Barrett, K.U., 2018. KayBarrett.net. Available from: http://www.kaybarrett.net/ [Accessed 1 October 2018]. Bronski, M., 2011. A queer history of the United States, vol. 1. Boston, MA: Beacon Press. Castells, M., 1997. The power of identity. Oxford: Blackwell. Castells, M., 2004. The internet galaxy: reflections on the internet, business, and society. Oxford: Oxford University Press. Castells, M., 2012. Networks of outrage and hope. Polity. Castells, M., 2015. Networks of outrage and hope: social movements in the internet age. Cambridge: Polity Press. Chronic Illness Cat, 2018. Facebook. Available from: www.facebook.com/ ChronicIllnessCat [Accessed 1 October 2018]. Dean, J., 2011. Blog theory: feedback and capture in the circuits of drive. Cambridge: Polity Press. D’Emilio, J., 2012. Sexual politics, sexual communities. Chicago, IL: University of Chicago Press. Duggan, L. (2004). The twilight of equality?: Neoliberalism, cultural politics, and the attack on democracy. Boston, MA: Beacon Press. Hine, C., 2000. Virtual ethnography. London: Sage. Hookway, N., 2008. ‘Entering the blogosphere’: some strategies for using blogs in social research. Qualitative Research, 8 (1): 91–113. Manic Pixie Nightmare Girls, 2018. Available from: manicpixienightmaregirls.com/ [Accessed 1 October 2018]. Mingus, M., 2018. Leaving evidence. Wordpress. Available from: https://leavingevidence. wordpress.com [Accessed 1 October 2018]. Miserandino, C., 2016. ButYouDontLookSick.com. Available from: https:// butyoudontlooksick.com [Accessed 1 October 2018]. Queer Memes, 2018. Facebook. Available from: www.facebook.com/ourqueermemes [Accessed 1 October 2018].

202  Zahari Richter Schick, E., 2014. Her voice is unpredictable, but she’s not embarrassed. Neither is her audience. Upworthy, 22 October. Available from: www.upworthy.com/her-voice-isunpredictable-but-shes-not-embarrassed-neither-is-her-audience [Accessed 1 October 2018]. This Is Autism Flash Blog, 2013. Available from: thisisautismflashblog.blogspot.com/ [Accessed 1 October 2018]. Transgirlnextdoor.com, 2018. Available from: www.transgirlnextdoor.com/ [Accessed 1 October 2018].

Part IV

Agitating the state

14 Disability masked avengers The Bolshy Divas Katie Ellis

In 2013, a cleaner at Australia’s Parliament House left a card for the nation’s leader. The colourful message drawing on the imagery of Alfred Hitchcock’s classic 1960 movie Psycho, left on Julia Gillard’s chair, read, ‘Funding that only allows you to shower once a week? That’s enough to drive anyone psycho’. Gillard’s gift, which highlighted the maddening care deficiencies Australian residents with disabilities experience, was the work of a disability activist group known as the Bolshy Divas. The cleaner who placed the card at the desk of the Wales-born leader was a Divas member. The group also sent a similar message to former federal disability minister and now retired Queensland senator Jan McLucas, that ‘It’s bound to make you cranky if you’re excluded from life, marginalised or restricted to having one shower a week’. But who are the Bolshy Divas and how has the group helped transform the political and cultural landscape of the Commonwealth nation of Australia? The Bolshy Divas, with their focus on fighting for social justice from within and outside an organization, have been likened to a modern group of masked disability avengers, a trope the disability activists embrace. ‘Bolshy Divas use humour, art and passion to talk about the overlooked, the unfair and the subtext behind real issues which affect Australians with disability’, the group writes at its Weebly website. The group describes its members as ‘disability activists in the style of feminist masked avengers, exposing and discussing discrimination, unmet need and issues which affect people with disability and their families’ (Bolshy Divas n.d.). The masked avenger trope in popular fiction is used for superheroes, many of whom are aristocrats in their everyday lives, who ‘assume a colourful, themed disguise and an alternate identity’ (Munro 2014). The trope, although popularized in 1940s pulp comics, can be traced back to the 1830s (Munro 2014). It has been taken up in both feminist and anti-capitalist activism (Hadley 2017b). The Divas formed in late 2010 in Perth, Western Australia, while Australia was in the middle of negotiations around what was being described as the biggest social reform the country had seen in decades – the National Disability Insurance Scheme (NDIS) (Young 2013). Members of the group had learned about the NDIS in 2009, approving of the strategy’s plan to encourage mainstream Australia to look through a disability lens when examining how to include people in employment, housing, education, transport and other areas (Soldatic and Love 2012). The Western

206  Katie Ellis Australian disability activists then appropriated the image of the feminist masked avenger and assumed their alternative identity – the Bolshy Divas. The Divas collective, now a national group, prefers to be thought of as a movement rather than a formal group. Speaking of the group’s formation for this chapter, one Bolshy Diva told me the movement had operated in a similar way to a feminist who was not a member of a feminist group. ‘For a long time it was pretty much smoke and mirrors’, she wrote on the condition of anonymity. ‘We were activists who didn’t tell people who we were and the myth of the Divas grew. We were female masked avengers and our weapons were not just being women and being feminists and being disability activists – our weapons were building a movement of women (and some men, the DwDs [Divas with Dicks]).’ As negotiations intensified on how to implement the NDIS, the group recruited members and they drew national attention. ‘We opened our movement to disabled people, carers and allies and they were mostly people who were aligned with our cause’, the Diva wrote of the group’s often anonymous members. ‘And so we grew – there are divas everywhere and sometimes they do things and sometimes they do not. That woman who put a Bolshy Diva card and note on Julia Gillard’s seat – brilliance. She was the cleaner.’ Traversing the line between advocacy and activism, the Bolshy Divas were formed to collectively organize against regressive state policy in relation to disability rights while protecting the work of disability advocates working on the inside as ‘respectable middle-class professional disability advocates’ on national committees, inquiries and commissions. The Bolshy Divas collective, with its utilization of a range of creative online platforms, has provided an alternative mechanism to rally disability rights advocates and activists. The Divas movement has also received international attention and influenced Australian disability policy. Drawing on interviews with founding members, media coverage and social media artefacts, this chapter offers a case study of the Bolshy Divas to explore the possibilities of disability media activism online. There are no set criteria for a person’s suitability for becoming a member of the Divas. ‘There are no requirements to be a Bolshy Diva, just owning a desire to bring about change, a sense of humour and a tonne of “bolshiness” – enough guts to talk about the issues openly and honestly’, the group writes on its website. The top definition of ‘bolshy’ on Urban Dictionary is to be ‘very assertive in the pursuit of something and/or hostile to authoritarian manoeuvres by others’ (Andy 2004). Another contributor to the popular colloquial dictionary website suggests the word is ‘an adjective used to describe someone who has a lot attitude [sic] and confidently expresses their views, may cause a lot of heated discussion and arguments’ (Whyami 2013). In the context of Australian disability activism, bolshiness is ‘a willingness to speak and act obstreperously – to advocate for disability reform and draw attention to injustices experienced by disabled Australians’ (Wood 2012). The first part of the chapter focuses on academic approaches to disability activism and social media. This section briefly introduces theories of participatory culture and reflects on the ways disability activists increasingly use online media,

Disability masked avengers  207 situating the Bolshy Divas within both Henry Jenkins’s (2009) seven-point framework of a participatory culture and Filippo Trevisan’s (2017) three types of online disability activists. The Bolshy Divas, like Trevisan’s participatory group of disability activists who exist solely online and do not necessarily meet, amassed a significant online-only network through its members’ effective use of social media. Founding members also worked in more official capacities on boards, and when the originally anonymous founders revealed their identities in order to give testimony at a 2013 Australian Senate inquiry into the NDIS, the Divas became a unique type of online disability activist group existing in the intersection of what Castells (2012) famously described as the physical space of place and the online space of flows. Although the founding members unmasked themselves to give testimony at the Senate hearing, the movement continued to project an air of mystery. As the group’s website states, ‘We are many … We could be anyone. We are anywhere’. The Bolshy Divas received significant media attention when its members unmasked again to give testimony at the Senate hearing into violence against people with disabilities (Community Affairs References Committee 2015, Ireland 2015) and then later at the white flower memorial to remember people with disability who had died as a result of violence and abuse. Despite the Divas capturing the attention of a number of Australian politicians, this assertive and confident group of disabled feminists has consistently been excluded from mainstream feminist spaces in the Australian social media landscape. The final part of this chapter draws on a wider social media activist tendency described as a call-out culture and reflects on the ways the Bolshy Divas and women with disabilities have been excluded from participation in another online feminist movement, Destroy the Joint (DtJ). While DtJ was created to facilitate a more inclusive Australia, several commentators suggest its interactions with disability have been ableist (Connor 2015a, Ellis 2015a, Thill and Dreher 2017). The exchange is indicative of the exclusion of disability from social justice spaces.

Theories of disability media activism In the early 1990s, pioneering social-model disability activist-academics Colin Barnes and Michael Oliver together with Ian Bynoe observed a shift in disability advocacy that had been prompted by a move towards self-organization: Increasing numbers of disabled people [have adopted] a shared political identity, which in turn has helped to build a new mood of confidence. Disabled people no longer ask for change but demand it. They are prepared to use a whole range of tactics in pursuit of their demands, including direct action and civil disobedience. (Bynoe et al. 1991) Online environments foster the creation of the shared political identity that Shakespeare (1993) and others suggest is the crucial first step on the path to demanding political and social change. For Shakespeare, the formation of identity

208  Katie Ellis and group consciousness is ‘about the subversion of stigma: taking a negative appellation and converting it into a badge of pride’ (Shakespeare 1993). A key example of this is the way disability activists embraced online communications and social media to protest the Conservative-led coalition government’s disability reforms in Britain from 2010 to 2012. In his analysis of the ways these activists utilized online communications, Filippo Trevisan (2017) identifies three main types of online disability activist: Formal disability organisations (both ‘professionalised’ charities and selfadvocacy groups); experienced disabled activists who had been part of the disabled people’s movement in the 1980s and 1990s, and joined forces again to protest against the welfare reform; and finally, a new generation of technology savvy disabled bloggers who came together as an advocacy group for the first time in the wake of the welfare reform controversy. (Trevisan 2017) For each group, the web was a key communications strategy to facilitate interactive and participatory advocacy (Trevisan 2017). While the first two groups blended both online and offline advocacy, for the third group the advocacy took place entirely online. The final group which Trevisan describes as ‘digital action networks’ were geographically disbursed across the country and would never have met had it not been for their online activism. For Ellis, Kent and Goggin, these online-only activities highlighted the importance of digital technology to the lives of people with disability within and beyond activism (Ellis et al. 2015). These digital action networks tended to congregate online under specific issue rubrics, such as The Broken of Britain, which maintained a strong focus on disability welfare. While that group never sought to formalize its governance structure, Trevisan suggests the open and participatory style of leadership ‘enhanced opportunities for the online supporters … to play a more meaningful role’ (Trevisan 2017). Several disability theorists confirm the importance of leadership in disability media activism (Shakespeare 1993, Trevisan 2017, Ellis and Goggin 2018). As Ellis and Goggin explain, drawing on Ellis’s edited collection with Mike Kent (Ellis and Kent 2016), studies of disability social media activism highlight the importance of accessibility and usability of online platforms, facilitate a crossing of geographical boundaries, and finally allow members to ‘select their own leaders’ (Ellis and Goggin 2018). These three features of the disability activists contributing to Ellis and Kent’s collection align closely to Henry Jenkins’s framework of participatory culture, as does Trevisan’s claim that participatory online media has facilitated more meaningful activist participation for technology-savvy disability activists. In Confronting the Challenges of Participatory Cultures: Media Education for the 21st Century, Jenkins defines participatory cultures as: a culture with relatively low barriers to artistic expression and civic engagement, strong support for creating and sharing one’s creations, and some type of informal mentorship whereby what is known by the most experienced is

Disability masked avengers  209 passed along to novices. A participatory culture is also one in which members believe their contributions matter, and feel some degree of social connection with one another (at the least they care what other people think about what they have created). (Jenkins 2009, pp. 5–6) While Jenkins defines a participatory culture as one in which previously disempowered individuals can successfully effect social change, Trevisan suggests disability activists use social media and participatory cultures in different ways depending on their prior experience with online advocacy and existing groups. The Bolshy Divas is effective because its members believe their contributions matter and the system of informal mentorship or collective intelligence (Lévy 1997) within the movement allows both novice and experienced members to pass on what they know to each other.

The Bolshy Divas The Bolshy Divas make use of participatory media spaces and techniques: There are no requirements to be a Bolshy Diva, just owning a desire to bring about change, a sense of humour and a tonne of ‘bolshiness’ – enough guts to talk about the issues openly and honestly. We could be anyone – we are everywhere. We rank amongst the almost four million people with disability, plus their families. We are strong. We are Bolshy Divas. (Bolshy Divas n.d.) The Bolshy Divas admit the group was ‘an informal network of mostly women that would do things and they weren’t really known to all of us at all’. Cards such as the one cited at the beginning of the chapter were distributed throughout Australia, online and offline, in an effort to raise disability social justice issues. The limited academic work produced on the Bolshy Divas positions the group within the domain of Australian disability theatre (Hadley 2017a, 2017b) or as an example of the workings of new theories of media justice (Thill and Dreher 2017). Mainstream media attention, on the other hand, situates the collective as causing a uniquely Australian ‘crip commotion’ (Jack 2012, Wood 2012). The divas are noted as using popular culture and performative communication techniques to fight for disability social justice in such a way that makes politicians pay attention (Soldatic and Love 2012, Holland 2015, Ireland 2015, 2016, Kavanagh and Robinson 2015, News Corp 2015, Perpitch 2015, Parker 2017). The group has also captured the attention of a wide variety of bloggers (adefinty2 2013) and advocacy groups, both disability related (Keeping Up With … 2013, Willow Court History Group 2015, Barton 2017) and otherwise (Bad Landlord Australia 2014, Community Affairs References Committee 2015). Using social media in an effective way is central to the collective’s impact. The Bolshy Divas’ approach to social change involves ‘learning to use social media well, and then also being connected into places where you know you can

210  Katie Ellis get information out very, very quickly’ (interview with Bolshy Diva member). In this way, the group’s members use mainstream media in conjunction with social media strategies. For example, ‘a carefully crafted outraged Facebook status that is designed to appeal to a bunch of people who like angst-y complaints. So making it light-hearted, making it really targeted’ can be particularly effective and prompt mainstream media interest. In a profile in Starecase magazine, the Divas offer tips for being bolshy, including: (1) Tell your stories (2) Keep it real (3) Make connections (4) Keep a sense of humour (5) Maintain your principles.

(Connor 2013)

Social media is integral to these tips and the activities of the Bolshy Divas, and people with disability in general. Like Trevisan, they believe online activism has created new opportunities for social connection and participation: Part of the problem for the disability rights movement has always been resourcing and isolation – geographic isolation and isolation caused by disability and poverty. The advent of social networking has created a new way for people with disability to connect and mobilise. (Connor 2013) For a long time, the divas remained anonymous. Typically, when discussions of disability and online anonymity intersect they focus on the ‘choice to disclose’ that individuals with a disability have when using non-visual media online – email, chatrooms and debutante messenger service ICQ (Bowker and Tuffin 2002, Seymour and Lupton 2004). However, for the Divas, their disabled identity was disclosed before their names as a political strategy. A Diva, corresponding with me for this chapter, shared the group’s experience. ‘The work that we did was and is mostly not seen by the public. [Two of us] authored the Fifty Shades of Grey doc in a night … we rang divas in other states to clarify key points. It is on our website’, she wrote. ‘I had to read Fifty Shades to write the fucking thing – pretty much the ultimate sacrifice for the movement LOL’. The anonymously submitted Divas’ NDIS bill response outlined the submissive position of people with disability in Australian society: In the world of the disability sector, there’s a lot of doing ‘for’ and ‘to’ rather than ‘with’. And there are a bunch of master-and-slave relationships, if you think about it – why would you speak up if you’re afraid of losing your support, losing your funding, being worse off? People in our sector have a history of being suppressed and down-trodden, and the prospect of being ‘actively involved’ is something we’re not used to. But it can’t work unless we ARE involved. That document, the CRPD … it says we need to be. It says we need to

Disability masked avengers  211 be players in this game of chess, rather than the pawns. But how can we make sure people with disability are respected and recognised as players in this game? (Bolshy Divas 2013) At first the Senate Committee had ‘no idea’ who the Bolshy Divas were, shared the Diva who spoke to me for this chapter. The regulators reportedly found out the Divas’ identities when ‘Ian Holland, then Senate Secretary, somehow tracked us down via an indiscreet politician. He rang me up (brave man) and invited us to give evidence. So we did’. The Bolshy Divas members outed themselves because someone ‘had to front up at that senate hearing’. They arrived at the ‘sedate’ NDIS Senate hearing wearing leather and cracking a whip. The politicians paid attention. Later, the Divas who often ‘focused on violence’ would attend another Australian Senate hearing, this time into violence against people with disabilities (Community Affairs References Committee 2015, Ireland 2015). Dressed as mourners, they ‘laid longstemmed white roses on the table as [they gave testimony]. We dressed as mourners and we read the Uncounted’. The Uncounted was the group’s response to the country’s national inquiry into violence, abuse and neglect against people with disability in institutional and residential settings: We bear witness for Client 1, a 46-year-old woman who at the time of her abuse was only 24 years old. She was admitted to Prince Charles Hospital at the age of 4 years old and was moved to the Basil Stafford Centre, a government-run residential facility in Queensland at the age of 11. Client 1 is described as being a woman who has an IQ of under 25, and stands 138cm in height. She continued to live at the centre until its closure. In 1986 it was discovered that she had been raped by a staff member and her pregnancy was not discovered until she was 20 weeks pregnant. A CJC [community justice centre] review in 1992 documented numerous incidents of violence, sexual and other abuse and gross neglect, including the death of a man who choked after lack of supervision. (Community Affairs References Committee 2015) These roses made an impact. ‘[Senator] Rachel Siewert and others kept those roses and they dried them out’, wrote the Diva I corresponded with. ‘When they handed down the report they wore them pinned to their jackets’. While the government did respond to the Senate report in March 2017 agreeing with the seriousness of the issue, they disagreed that a royal commission was required.

The Uncounted: intersectionality This harrowing story of Client 1 is not an outlier. The Bolshy Divas’ submission to the inquiry outlined 40 such stories of abuse. Submitted in conjunction with the Disability Clothesline, ‘an anti-violence disability project that counts the number of

212  Katie Ellis people who are neglected or abused’ (Community Affairs References Committee 2015), The Uncounted recalls the multiple and ongoing abuse experienced by men, women and children with disability in medical, housing and penitentiary institutions, and while accessing support and respite services. These narratives, both historical and contemporary, describe how individuals located at the intersections of race, gender, disability and class are disempowered, devalued, not believed and never given the opportunity to experience justice as time and again their abusers get away with abuse or are given even more power over their victims. There is the story of the deaf woman who was assaulted by her husband then forced to use him as an interpreter when reporting the incident to police. And the accounts of numerous women raped in group homes by support workers and other residents, women who were later sometimes forced into abortions or giving up their parental rights against their will. There are the stories of girls and women with disabilities raped by their bus driver in the state of New South Wales but considered unreliable witnesses, and those raped by a Western Australian taxi driver who were only believed because CCTV footage could be acquired. In both cases there are numerous unknown victims. The victims in each story are exceptionally vulnerable, they are denied opportunities in life, they are often institutionalized. Perpetrators are rarely punished or they are given professional warnings and, in some cases, are still being allowed to work unsupervised at the institution. The people with disability affected by the violence and abuse are left more vulnerable because they are afforded no right to self-determination and there is no one to speak for them or support them (in many cases, only coroners). Much of the violence is committed by people in positions of power and often for the sake of convenience, particularly within group home settings where residents are forced to go to bed early. The Uncounted is still available online (Bolshy Divas 2015), while the Disability Clothesline (n.d.) speaks for those people who cannot speak, for those lost people for whom the coroner is their only biographer: We are not counted in courtrooms, nor by police, nor in hospital waiting rooms. Our assaults and rapes and murders are dutifully catalogued along with the rest, but the numbers of victims with disability are not counted. We often have no Facebook page for the media to lift a photograph from, nor family who can mourn our loss. There are no public marches or night-time vigils when we have been murdered or killed, even in the most horrific of circumstances. (Community Affairs References Committee 2015) Since The Uncounted, I’m told the Bolshy Divas have now compiled ‘over a thousand accounts of violence against disabled people’ as part of their ongoing project ‘to bear witness and document Australia’s shame’, and the Disability Clothesline art installation has been displayed in the nation’s Parliament House in Canberra. In my interactions with the Bolshy Divas, intersectionality is often raised as a key priority, particularly with reference to the ways women with disability

Disability masked avengers  213 experience gendered violence. Intersectionality was defined in 1989 by Kimberle Crenshaw to articulate how the ‘dominant conceptions of discrimination condition us to think about subordination as disadvantage occurring along a single categorical axis’ (Crenshaw 1989). While Crenshaw focused on the ways feminism tended to take the experience of white, middle-class, educated women as the default experience of women, the term has since been expanded to address the experiences of women from other minority and disadvantaged groups. The term has also found currency among activists (Gordon 2016), including the Bolshy Divas. According to a presentation by Carolyn Frohmader and Samantha Connor for Women with Disabilities Australia, violence against women with disability must be viewed through an intersectional lens. Women with disabilities are disproportionately affected by multiple forms of violence, from forced sterilization to domestic and family violence: •• •• ••

•• ••

physical violence, such as the withholding of food, water, medication or support services, misusing medication as a restraint, using physical restraints and destroying or withholding disability-related equipment sexual violence, such as inappropriate touching during caregiving, taking control of reproductive processes and demanding sexual activities emotional violence, such as verbal abuse, forced isolation, denying or trivializing disability, humiliation, threatening violence, institutionalization or the withdrawal of care and threatening to hurt guide dogs, pets or other family members financial violence, such as stealing or taking control of money, taking control of investments and refusing to pay for essential medication or disabilityrelated equipment coercion and manipulation that result from existing hierarchies between people with disability and people without disability. (Frohmader and Connor 2015)

Increasingly, women’s experiences of domestic and family violence are being brought to the attention of politicians and the community with feminist activists staging awareness-raising campaigns such as the V-Day dance held on the beach in Byron Bay. However, as a Diva pointed out to me in an interview, holding the protest at an inaccessible location such as the beach without providing an access option for women with disability to participate effectively excludes women with disability. Rather than make their protests accessible, feminist organizers have encouraged women with disability to carve out their own ‘special little space’ away from the mainstream protest. This strategy of exclusion treats women with disability as though they aren’t women: When the disabled women come in and said, ‘Well, actually, we can’t get on to the sand, and we’re raped and abused more than lots of other women. We’d really like to come and protest with you, and also be part of this.’

214  Katie Ellis [The organisers say] ‘No, sorry, we’re not going to do that, but you’re welcome to have your own other little space over here, and maybe have a disabled persons protest.’ (Personal communication with Bolshy Diva member, 29 July 2016) Intersectionality is especially important with activism increasingly taking place in the social media space. As Jessamy Gleeson explains, in a platform where the silencing of opposing voices is as simple as clicking block and ban, ‘intersectionality should be a central activity and consideration for social media based feminist campaigns’ (Gleeson 2017). Digital feminist campaigns that ignore intersectionality should be criticized for presuming to speak for all women.

Established hierarchies of attention In August 2012, Australian shock jock Alan Jones claimed female politicians such as then prime minister Julia Gillard were ‘destroying the joint’. Almost immediately, several prominent female journalists, commentators and ordinary women began tweeting ways they were #destroyingthejoint as part of an energetic social media conversation against misogyny. The next day a Facebook page was created. Like the Bolshy Divas, anyone could be a part of destroying the joint – except, it would seem, women with disabilities. When a DtJ webpage was created, disability was left out of the group’s pledge: I want an Australia where girls and women, where men and boys, can take part in our society without enduring discrimination, sexism and violence. I want an Australia where we respect each other; an Australia where no person experiences hate because of their gender, race, religion or sexuality. And I will challenge anyone who uses sex, race, religion or sexual orientation to incite hatred or to demean or vilify any of us. I will not stand by and let others do so without speaking up. (DtJ 2012, cited in Connor 2015a [emphasis in Connor]) When it was pointed out that disability was left out of the pledge, DtJ are cited as claiming they ‘can’t include everything’ (Connor 2015a). However, as Samantha Connor observed, women with disability are rarely included: ‘When is a woman not a woman? When she’s disabled, of course’ (Connor 2015a). The US feminist site Feministing has also been accused of systematically excluding women with disability (Ellis 2015b). The exclusion of women with disability from the mainstream feminist space carved out by DtJ came to the fore in November 2015 when the Bolshy Divas were blocked and banned from the DtJ Facebook group. DtJ claimed the women were in breach of their rules. In line with DtJ’s focus on counting women who have died as a result of violence, the Divas had asked for help promoting their white ribbon memorial. The DtJ moderators responded that

Disability masked avengers  215 the event did not fit within their remit and refused to engage in further conversation, even reporting Facebook messages as abuse. When the page began a lighthearted conversation about #beingawoman, the Divas saw their opportunity and began posting stories of oppression under the hashtag. Then the DtJ moderators accused the women of ‘repeatedly spamming this post and page with a large number of obvious half-truths and distortions’. Yet the Divas had been telling stories about their actual real-life experiences, such as: My doctor told me to get a hysterectomy or change my tampon in my office because there was no accessible toilet nearby at my workplace #beingawoman In 2011, it was reported that a major mental health service in Victoria had been covering up sexual assaults of its patients, that a 20-year-old girl allegedly was sexually assaulted by a male nurse. She was told by staff not to tell anyone so it didn’t become ‘office gossip’. #beingawoman Three times I left and three times I was forced to return … forced by the agencies who were supposed to help me. Told the abuse was my fault and I should be grateful for the sacrifices my carer and his son gave up for me. And when I tried to complain about one of the DV agencies I ended up losing all supports and funding as the agency was affiliated with the NGO disability service provider I was under. Leaving me even worse off. And left much more traumatised as a result than I already was by the abuse at home. These are incredible stories of systemic oppression, abuse and marginalization that one would assume DtJ would be interested in exposing. While DtJ were not immediately inclusive of disability as a feminist issue, the group eventually apologized: Let us begin with a belated and unreserved apology about the way we have handled the comment moderation in this instance [the #beingawoman incident]. We acknowledge we can always be more inclusive. We are constantly discussing ways we can achieve this and no woman living with disability should be excluded from this page. Anyone who has been banned as a result of this will be unbanned. Please email jointdestroyer@ gmail.com so we can be thorough about this. It has always been our mission to include everyone and Counting Dead Women includes all women who have been killed as a result of gendered violence. (Cited in Ellis 2015a) As the group officially pledged to ‘do the right thing by all women’, several Divas remained blocked and comments made after the apology again described the women with disability as liars, spammers and trolls. In stark contrast to the immediate blocking and reporting of the women with disability contributing to

216  Katie Ellis #beingawoman, these comments were not moderated immediately. Despite the apology, Connor says DtJ never followed up: We haven’t heard a word from you. You’re not returning our calls nor talking about dead disabled women, despite the news that a senate Inquiry recommended a Royal Commission into violence against people with disability and that the news has been full of items around violence and disability. You’ve broken up with us after a relationship we’ve never had. Last Wednesday, three of our sisters, Senators Siewert, Moore and Lindgren, wore a dried white rose pinned to their jackets as they tabled the Inquiry report that called for a Royal Commission. The roses were dried after the Bolshy Divas, a disability activist group, lay a white rose on the table at the senate hearing to mark the death of each name they called. You’d think the calling for a Royal Commission into the abuse and murders of dead disabled women would be enough for you to give us a call – but there hasn’t been a word. (Connor 2015b) Cate Thill and Tanja Dreher situate the exchange within ‘established hierarchies of attention over whose stories are worth listening to and whose lives are grieveable’ and the ways these hierarchies ‘shape social as well as mainstream media’ (Thill and Dreher 2017). Thill and Dreher use the concept of media injustice or the non-recognition or misrecognition of certain groups in media representation, interpretation and communication to reveal the ableist nature of the exclusion. In an interview with me about using social media to amplify the voices of people with disability, one Diva described the ‘snafu with Destroy the Joint’ as a question of intersectionality: If you’re an equally marginalised group, why is it not okay to … claim a particular space? And so this is some of the issues that we have with the feminism space, as well that quite often we’re excluded from feminism space … It’s just you’re not women because you’re disabled … There has to be a special little space over for you, over there … with the White Flower [memorial to remember murdered and abused people with disability] … we wanted to hold on White Ribbon Day and we were met with huge resistance from some of the staff members from PWDA [People with Disabilities Australia] and also some other feminists who said, ‘No, you can’t actually hold it on this day because it’s appropriative and people – the public associates it with women and you’re going to be calling the names of dead men as well, the men and boys.’ And so we were trying to push forward the viewpoint that we will be calling the names of at least half of the people that we’re calling are the names of women, but we’re also going to be including men and boys to represent the fact that men and boys, who are disabled experience violence at huge rates which almost exceed the rates of women who were being abused. And on a day where we’re supposed to be talking about abuse, we need to recognise that the types of abuse that we experience [are] actually different

Disability masked avengers  217 from the types of abuse that you experience in terms of perpetrators and intimate partner violence. So we had a really big battle, and it was about that thing of ‘This is the women’s space. It’s for white metro-centric … women. And there’s the uncomfortable reality that nobody’s talking about [children who are murdered] nor all of the autistic boys who have been killed. The specific way people with disability experience violence is an often overlooked contradiction in the wider discussion of violence against women in the mainstream feminist social media space. Social media offered an important tool in the Bolshy Divas’ ability to participate in these debates and intervene in the non-recognition and misrecognition of disability in media representation, interpretation and communication. As issues with DtJ flare up from time to time, the Divas continue to craft clever, angsty, outraged Facebook statuses for disability media justice.

Conclusion Beginning with participatory cultures and ending with media justice, this chapter aimed to introduce an alternative mechanism to rally disability rights activism online via a case study of the various approaches taken by the Bolshy Divas at key political moments related to disability social justice issues in Australia. With disability activists internationally increasingly making use of online spaces to make connections and effect political change, the Bolshy Divas offer a unique example of the ways disability arts and popular culture can come together in an accessible and serious way. First and foremost, the Bolshy Divas make use of social media to tell their stories and those of other people with disability marginalized in Australian society. Fiercely maintaining their principles and sense of humour, the collective are authentic, uniquely qualified and skilled at making connections with people sympathetic to their cause, whether this be people with disability, their allies, cleaners, men (DwDs), politicians and other activists. While the divas continue to describe themselves as feminist masked avengers, founding members are regularly invited to attend Senate inquiries and are profiled in the media. Their approach to disability rights activism online and off has drawn significant attention to several issues, including violence against people with disability, poor funding for necessary supports such as daily showers, and the ways women with disability are excluded from contemporary online spaces. One of the Divas I spoke with describes the group’s impact and longevity between the ‘physical space of place and the online space of flows’ in Australian disability activism: the most powerful outcomes for this movement were other disabled women coming on board, finding community, understanding the strength and power we had collectively as feminist disabled activists. When we were in a room together, the room rang with laughter – but also with power. It was what drove us, along with the surety that what we were doing was needed and what we contributed was from irreplaceable expertise and experience.

218  Katie Ellis

Acknowledgements I gratefully acknowledge funding from Curtin University and the School of Media, Creative Arts and Social Inquiry for providing funding which supported research for this chapter. Thank you also to the two Bolshy Divas who spoke to me for this chapter and to the wider group for the work they do and their generosity in speaking with me on several occasions since 2011.

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Disability masked avengers  219 Connor, S., 2015b. An open letter to Destroy the Joint – we’re waiting [online]. The Stringer, 30 November. Available from: http://thestringer.com.au/an-open-letter-todestroy-the-joint-were-waiting-11226 [Accessed 9 March 2018]. Crenshaw, K., 1989. Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. University of Chicago Legal Forum, 1, 139–168. Disability Clothesline (no date) [online] https://disabilityclothesline.weebly.com/ [Accessed 28 December 2018]. Ellis, K., 2015a. Destroy the Joint, sure, but feminism must include disability politics [online]. The Conversation, 24 November. Available from: https://theconversation. com/destroy-the-joint-sure-but-feminism-must-include-disability-politics-51119 [Accessed 10 March 2018]. Ellis, K., 2015b. Disability and popular culture: focusing passion, creating community and expressing defiance. Surrey: Ashgate. Ellis, K. and Goggin, G., 2018. Disability and media activism. In: Meikle, G., ed., Routledge companion to media and activism. New York: Routledge. pp. 355–364. Ellis, K. and Kent, M., 2016. Disability and social media: global perspectives. London: Routledge. Ellis, K., Goggin, G. and Kent, M., 2015. Disability’s digital frictions: activism, technology, and politics. The Fibreculture Journal, (26), 7–31. Frohmader, C. and Connor, S., 2015. Understanding violence against women with disabilities [online]. Women With Disabilities Australia (WWDA). Available from: wwda.org.au/wp-content/uploads/.../1800RESPECT_WWDA_Webinar_Oct15.pptx [Accessed 26 March 2018]. Gleeson, J., 2017. Only for white, middle-class feminists? Issues of intersectionality within the worlds of contemporary digital feminist campaigns. Platform: Journal of Media & Communication, 8 (2), 7–18. Gordon, L., 2016. ‘Intersectionality’, socialist feminism and contemporary activism: musings by a second-wave socialist feminist. Gender & History, 28 (2), 340–357. Hadley, B., 2017a. Disability theatre in Australia: a survey and a sector ecology. Research in Drama Education: The Journal of Applied Theatre and Performance, 22 (3), 305–324. Hadley, B., 2017b. Disability, sustainability, austerity: the Bolshy Divas’ arts-based protests against policy paradoxes. CSPA Quarterly, 18, 34–37. Holland, S., 2015. Sexual abuse and torture of disabled people rampant, inquiry hears. Brisbane Times. Ireland, J., (2015). ‘Sometimes the coroners are our biographers’: It’s time for Australia to act. The Sydney Morning Herald, 27 November. Available from: http://www.smh. com.au/federal-politics/political-opinion/disability-abuse-they-arrived-with-a-bundleof-white-roses-20151126-gl8q0d.html [Accessed 3 October 2018]. Ireland, J., (2016). Anger, frustration over government silence on disability abuse royal commission. The Sydney Morning Herald, 12 April. Available from: http://www.smh. com.au/federal-politics/political-news/anger-frustration-over-government-silence-ondisability-abuse-royal-commission-20160411-go41s8.html [Accessed 3 October 2018]. Jack, P., 2012. Bolshy Divas … An Australian contribution to the world [online]. Inclusion. Available from: http://inclusionnetwork.ning.com/profiles/blogs/bolshy-divas-anaustralian-contribution-to-the-world [Accessed 3 October 2018]. Jenkins, H., 2009. Confronting the challenges of participatory culture: media education for the 21st century. London: MIT Press.

220  Katie Ellis Kavanagh, A. and Robinson, S., 2015. ‘We count what matters, and violence against people with disability matters’. The Conversation, 27 November. Available from: https://theconversation.com/we-count-what-matters-and-violence-against-peoplewith-disability-matters-51320 [Accessed 1 October 2018]. Keeping Up With …, 2013. ‘The mermaid and the smoo’ [online]. Keeping Up with Down Syndrome New South Wales, 12 December. Available from: http://keepingupwithds. blogspot.com.au/2013/12/the-mermaid-and-smoo.html [Accessed 3 October 2018]. Lévy, P., 1997. Collective intelligence: mankind’s emerging world in cyberspace (R. Bononno, Trans.). New York and London: Plenum Press. Munro, M., 2014. The secret origins of the masked avenger (trope) [online]. Past Tense, 17 October. Available from: https://pasttense.kinja.com/the-secret-origins-of-the-maskedavenger-trope-1508420796 [Accessed 8 February 2018]. News Corp, 2015. Disabled residents abused daily: Perth inquiry. PerthNow, 10 April. Available from: https://www.perthnow.com.au/news/wa/disabled-residents-in-carecentres-abused-daily-perth-senate-inquiry-ng-de7440cc0af82b82fe509fcbf504ed81 [Accessed 3 October 2018]. Parker, J., 2017. WA NDIS under scrutiny from people with disabilities. Green Left Weekly, 3 March. Available from: https://www.greenleft.org.au/content/wa-ndisunder-scrutiny-people-disabilities [Accessed 3 October 2018]. Perpitch, N., 2015. People with disabilities raped, beaten, neglected while in care, inquiry told. ABC News, 10 April. Available from: http://www.abc.net.au/news/2015-04-10/ disabilty-hearings-in-perth-report-rape-neglect/6384308 [Accessed 3 October 2018]. Seymour, W. and Lupton, D., 2004. Holding the line online: exploring wired relationships for people with disabilities. Disability & Society, 19 (4), 291–305. Shakespeare, T., 1993. Disabled people’s self-organisation: a new social movement? Disability, Handicap & Society, 8 (3), 249–64. Soldatic, K. and Love, T., 2012. New forms of disability activism: who on earth are the Bolshy Divas? [online]. Ramp Up, 11 July. Available from: http://www.abc.net.au/ rampup/articles/2012/07/11/3543571.htm [Accessed 10 February 2018]. Thill, C. and Dreher, T., 2017. Disability, listening and media justice. ANZCA 2017, Sydney University. Available from: http://www.anzca.net/conferences/past-conferences/2017conf/anzca17-thill-dreher/file.html [Accessed 3 October 2018]. Trevisan, F., 2017. Disability rights advocacy online. New York, NY: Routledge. Whyami, 2013. bolshy [online]. The Urban Dictionary. Available from: https://www. urbandictionary.com/define.php?term=bolshy&utm_source=search-action [Accessed 10 March 2018]. Willow Court History Group, 2015. National disability abuse inquiry [online]. Willow Court History Group, 11 April. Available from: http://www.willowcourttasmania. org/2015/04/11/national-disability-abuse-inquiry/ [Accessed 3 October 2018]. Wood, C., 2012. Tales from the crip: Bolshy Divas: masked feminist avengers. Bitch Media, 8 November. Available from: https://www.bitchmedia.org/post/tales-from-thecrip-bolshy-divas-masked-feminist-avengers-disability-activism [Accessed 3 October 2018]. Young, S., 2013. Disability reform is enough to keep any minister busy. ABC News, 19 September. Available from: http://www.abc.net.au/news/2013-09-19/young-dsabilityreform-is-enough-to-keep-any-minister-busy/4969060 [Accessed 3 October 2018].

15 Advocacy in Jordan A paradigm shift from the medical model to the rights-based approach Muhannad Alazzeh

Introduction For centuries, as in most countries, the disability movement in Jordan was ­influenced by the medical model in its perspective towards and handling of the rights and issues of people with disabilities. At the legislative level, for example, the discriminatory medical model can be observed in article 17 of the Notary Law No. 74 of 1951, which regulates the procedural and practical aspects of legal civil and commercial actions. This article states clearly that persons who are blind, deaf or with psychosocial disabilities are not ‘competent’ to testify in any civil, commercial and other transaction due to their disabilities (Al-Azzeh 2012). The charitable model also was manifested in the permeation of charity work in the field of disability in the second half of the past century. Charitable activities targeting people with disabilities were limited to securing donations and providing financial aid and in-kind benefits. The beginning of the 1980s brought winds of change at the international level. Yet the field of disability in Arab and developing countries remained trapped within the typical welfare and medical models; this trend met the spiritual and humanist needs of society, with people doing good deeds in order to express pity, ‘satisfy God’ and ‘access heaven’. The first law regarding people with disabilities in Jordan was issued in 1993. It was a welfare law of the first order, starting with its name, Law for the Welfare of Disabled Persons (DREDF 2000), and in its articles that were preaching in tone and closer to a declaration of principles than to applicable law articles. To make things worse, the implementation of the law was prevented altogether due to its poor wording and shallow content. Article 2 defines a person with a disability as: Any person with a permanent, partial or total impairment in any of his senses or physical, psychological or mental abilities to the extent that the ability to learn to be rehabilitated or to work, is limited in a way which renders him/her short of fulfilling his/her normal daily requirements in circumstances similar to those of able-bodied persons. (DREDF 2000)

222  Muhannad Alazzeh In addition to the medical sense and the ambiguity in this definition, the same law reflects in article 3 a deeper adoption of the medical approach within the generalized nature of the overall text: The philosophy of the Hashemite Kingdom of Jordan with regard to its disabled citizens springs forth from Arab-Islamic values, the Jordanian constitution, the National Charter, the Laws governing education and higher education, the World Declaration on Human Rights, and the International Declaration on Disabled Persons; and stresses the following principles: A. The right of disabled persons to be integrated into the general life of the society. B. The right of disabled persons to education and higher education commensurate with his/her abilities. C. The right of disabled persons to employment commensurate with their capabilities and qualifications, and their right to sports and recreation … (DREDF 2000) This law clearly articulates the medical perspective since it looks at physical, sensory and psychological ‘impairment’ in isolation from environmental obstacles and attitudinal barriers, which play a major role in the creation of a disability. Changes in the model for dealing with the rights of people with disabilities began with the early drafting process of the Convention on the Rights of Persons with Disabilities (CRPD) (UN 2006) at the start of the 21st century. Jordan consistently attended the meetings of the ad hoc committee for the drafting of the Convention. This official activity in the corridors of the United Nations was paralleled by the activities of civil society organizations in Jordan and other Arab countries. Activists with disabilities and their organizations avidly attended the committee meetings and they played a great role in pressuring official Arab delegations about articles that were problematic. These included article 12 of the Convention concerning ‘legal capacity’ and article 23 ‘Home and Family’. Most importantly, a civil rights movement materialized in the field of disability in Jordan, largely due to the negotiations regarding the CRPD. This motivated activists in the field to be more involved in a larger national movement aiming to change the legislative and practical reality for people with disabilities in Jordan. The disability movement in Jordan was still in its beginnings and it tried to harness all efforts to support its demands to amend legislation to be in conformity to the principles of the CRPD, even before it was adopted by the United Nations General Assembly. In 2005, King Abdullah II received the Franklin D. Roosevelt International Disability Award (UN 2005), and this was the perfect occasion to call for improvements in the rights of people with disabilities in Jordan. It was also a good opportunity to change the thought pattern and methods used for dealing with the issues and rights of people with disabilities. Accordingly, the Jordanian Ministry of Political Development asked civil society representatives in the field of disability to take part in the process of drafting a new law in 2006.

Advocacy in Jordan  223 This law would be rights-based and would narrow the gap between national legislation and the principles and provisions of the Convention on the Rights of Persons with Disabilities. Extensive consultations with people with disabilities and their representative organizations started in order to draft the new law. This was unprecedented in Jordan to have representatives of civil society participating in official committees to draft national legislation. King Abdullah met with these representative organizations and with government officials, with a report on the reality of disability in Jordan and the embodied challenges having been prepared for this meeting. As a result, a royal decree advising the formation of a committee of experts representing all sectors in Jordan was issued. The task of the committee would be to develop the first national strategy for people with disabilities (HCAPD 2018). In this way, Law No. 31 of 2007 on the Rights of Disabled Persons was issued, and the National Strategy for the Rights of Persons with Disabilities 2007–2015 was endorsed. In addition, the Higher Council for the Affairs of Disabled Persons was established as the first official and national entity to adopt the rights and issues of people with disabilities in Jordan (HCD 2018). This marked an advancement at the legislative level and in terms of representation and the participation of people with disabilities in the decision-making process in Jordan. Despite this, the disability movement had not yet gained enough momentum to be the force initiating change rather than responding to the state and its official systems. In order for the rules of the game to change, it was necessary for some time to pass. It was also necessary to have radical changes in the concept, philosophy and definitions regarding disabilities. Law No. 31 of 2007 is a turning point in the state’s method of dealing with disability and in placing disability on the national agenda; however, this law could not completely get rid of the legislative philosophy based on the medical and welfare models for it embraced the same definition of persons with disabilities as in the 1993 ‘welfare law’. Hence, there was still a need to make bigger changes. This would eventually come about through a process of legislative reform and change of direction that required immense effort and a renaissance on the part of the stakeholders, including people with disabilities and their representative organizations.

Enhancing the civil movement and the emergence of advocacy initiatives Jordan ratified the Convention on the Rights of Persons with Disabilities and published it in the official gazette in 2008 so that it would become part of the national legislative system. The disability movement in Jordan had begun raising awareness about the Convention among concerned circles in different parts of Jordan. At the same time, a number of people with disabilities and their allies received support from the USAID Civil Society Program to prepare a report monitoring the state’s commitment to applying the provisions of the Convention. This parallel report on the implementation status of the Convention was to be ready in time for when Jordan presented its official report to the CRPD monitoring committee in 2012.

224  Muhannad Alazzeh A number of people with disabilities undertook the revisions, research and the legal analysis for the report, and took advantage of the parliamentary elections approaching in 2010 to put some of the issues on candidates’ platforms. At that point, the first organized advocacy campaign was launched by the disability movement in Jordan under the name Takafo, meaning ‘equality’ (HCD 2011). This campaign strived to amend the voting procedures for people with disabilities in the parliamentary elections. Previous election laws and procedural regulations violated the right to secrecy and privacy for people with disabilities and people who were illiterate. These laws stipulated the announcement of the name of their candidate of choice in front of a committee made up of three people who would write the name of the candidate and put the ballot in the box. The Takafo campaign had an advocacy plan that featured a position paper and an in-depth legal analysis of the provisions of the elections law and the attendant regulations. It also involved a media campaign about the rights of people with disabilities to vote independently and privately by making available means of access and facilitating reasonable accommodation in polling stations. Such accommodation included sign language and allowing the blind and people who were illiterate to vote through their personal assistants, whom they would have chosen freely and independently. The Takafo campaign proved itself powerful when the Ministry of Interior conducted a meeting with the representatives of the campaign to hear their demands and to discuss these from a legal and a practical perspective. Days after this meeting in August 2010, the Minister of Interior announced the ministry’s agreement to the demands of the campaign in full. Once the Takafo campaign achieved its demands in obtaining official recognition, it started an extensive process of monitoring the elections to make accessibility and other reasonable accommodations feasible at polling stations, as had been agreed with the Ministry of Interior. Takafo also started awareness-raising campaigns among the community of people with disabilities in order to update them on the latest achievements and encourage them to use the new voting procedures. The campaign recruited more than 100 volunteers to help in monitoring polling stations in the different governorates in Jordan. Tools, questionnaires and guides to finish the monitoring process in an optimal manner were developed. The results of this process showed a major change in the exercise of the right to vote for people with disabilities: there was a rise in the number of voters and in the culture of complaining and reporting any violations of the right to privacy when voting. The procedural amendments that happened in the elections of 2010 came as a result of regulations, not by law, meaning that if these regulations were amended or cancelled, people with disabilities would lose whatever gains they had achieved. Therefore, Takafo prepared a lobbying campaign to amend the election law itself to articulate the right of people with disabilities to vote freely and in private and to assert their right to ask for a personal assistant during the voting process to coincide with the Parliament’s revision of the election law in 2012. Takafo met with a group of influential parliamentarians to convince them of the importance of including articles in the amendments to the election law to conform with the principles of the Convention on the Rights of Persons with Disabilities,

Advocacy in Jordan  225 specifically with the provisions of article 29 regarding the right to participation in public life. The campaign succeeded and, for the first time, the election law contained ­provisions concerning people with disabilities to guarantee their right to vote independently and in private. This law also guarantees the same right to illiterate people. In this way, Takafo achieved a legislative victory at the national level. It was also the first civil movement to directly produce changes at the political and legislative levels in Jordan.

The civil society report and its role in effecting change The disability movement in Jordan gained huge momentum with its successes between 2008 and 2012. While Takafo was campaigning to amend the election law, it was also working with a group of organizations active in the field of disability to prepare the first civil society report in the Arab region monitoring the implementation of the CRPD at the policy and practical levels. At the beginning of 2012, the report, entitled Mirror of Reality and a Tool for Change, was published: it featured an in-depth analysis of more than 100 laws and regulations (Al-Azzeh 2012). These included national criminal and civil laws and those concerning personal status, public health, education, litigation, access to bank services, access to buildings, unions and professional law, labour law, vocational rehabilitation, transportation, protection against family violence, access to information, and regulation of the media sector. The report exposed a number of legislative gaps and discriminatory provisions regarding disability, especially as regards legal capacity and forced institutionalization in medical and welfare institutions. This is in addition to provisions that exclude people with disabilities from the job market; the civil service statute, labour law and medical county committees statute contain articles that deem people ‘incapable’. These laws exclude people with disabilities from government positions and render their appointment in the public sector even more difficult. The civil society report created shock waves in Jordanian society and angered some government authorities, who were encountering a deep and critical reading of the reality of disability for the first time. The analysis did not align with the sentiment that had been prevalent for a long time among decision-makers who had deluded themselves that the status of people with disabilities in Jordan was good, even better than in other countries. The report pushed the government to take a positive step by holding an extensive meeting with the team that had written it at the national centre for human rights. In the meeting, there was an exchange of perspectives about the results and recommendations of the report. One of the positive outcomes of this meeting was that a number of government authorities showed a willingness to cooperate with the team that prepared the report to execute the recommendations and to work on bridging legislative and practical gaps. Following the release of the report, government authorities started preparing Jordan’s official report for the CRPD monitoring committee. It was hard to ignore the impact of the civil society report and its highlighting of several issues that had to be reformed and improved. The official report was in harmony with the

226  Muhannad Alazzeh civil society report in methodology and content; it underlined the challenges and admitted to many deficiencies that had to be tackled. The team that worked on the civil society report made use of the positive discursive atmosphere and started a conversation with the Higher Council for the Affairs of Disabled Persons, as it was called at the time. They took up the opportunity presented by a royal committee being formed to work on constitutional amendments and they aimed to work together to produce change at the institutional, legislative and practical levels. Accordingly, the civil society report team coordinated with the Higher Council to prepare a proposal concerning the rights of people with disabilities to be included in the Jordanian Constitution. Following meetings with parliamentarians and politicians, the Higher Council and the report team managed to convince the royal committee to propose an article that clearly articulates the rights of people with disabilities. Accordingly, paragraph 5 of article 6 states that ‘the law protects motherhood, childhood and the elderly and cares for youth and those with disabilities and protects them from offense and exploitation’ (Independent Election Commission 2016). This text is not identical with the phrasing and language suggested by the representatives of civil society organizations; however, the mention of disability in the Constitution, which is the highest legislative text in the state, was appreciated. It was also seen as a positive step that reflects a clear political willingness to enhance the rights of people with disabilities and to make sure they enjoy exercising these rights without any form of discrimination.

Legislative reform In 2012, the positive atmosphere in the disability field motivated the Higher Council for the Affairs of Disabled Persons to invite a number of activists with disabilities and their representative organizations to form a legal committee. It was assigned the task of preparing a comprehensive, brand-new law to address all the limitations and gaps in the national legislative system. This committee was also in charge of developing measures that would ensure effective implementation and monitoring of the law. The committee worked for almost four years in which it reviewed the majority of state laws and regulations, administrative decisions and procedural regulations to analyze gaps and determine whether to amend texts to address disability or abolish them altogether. Over these four years, the committee held consultative meetings with people with different kinds of disabilities. These groups included blind people, the Deaf community and people who are hard of hearing, people with physical disabilities, intellectual disabilities, psychosocial disabilities and neurological disabilities, and people with multiple disabilities. This was in addition to organizations of people with disabilities and organizations of parents as well as children with different kinds of disabilities with the consent of their families. The meetings also involved people who worked in education, labour, health, forensic medicine, the judiciary system, the Ministry of Justice, security services and universities as well as experts in human rights and social sciences, experts in accessibility, representatives of professional and labour

Advocacy in Jordan  227 unions, and representatives of the volunteer and private sectors. Each group was invited according to the aspect that the committee was working on. The committee adopted this participatory methodology at its establishment and continued using it even after issuing the first draft of the law. The first draft of the law contained provisions that would intensify punishment for crimes committed against people with disabilities. This was a cause of concern for the committee, which wanted the new law to be a model for anti-­ discrimination based on disability and not designed as a penal code. The opportunity for these provisions arose when the government and Parliament started reviewing the penal code at the same time the committee was working on the second draft of the law. Accordingly, the committee proposed amending the penal code in such a way that would render crimes against people with disabilities an aggravating condition in cases of physical and psychological abuse, negligence in care, indecent exposure, rape and fraud. The negotiations among the legal committee, the Ministry of Justice and Parliament led to amendments to the penal code: for the first time, and unprecedented in the region, more than 12 articles were issued rendering crimes targeted at people with disabilities an aggravating condition. This means that perpetrators would receive the maximum punishment set for the crime (Dupire 2018). The law regarding the rights of people with disabilities went through more than ten draft versions before being presented to the government for discussion and endorsement as an official bill to be sent to Parliament. After issuing every draft, meetings with the stakeholders and with experts were held for feedback and it would then be amended accordingly. This law was meant to be participatory in the first order and inclusive of everyone invested in it. Advocacy activities were at their highest when the final draft of the law was sent to the Cabinet to be discussed in the legislating bureau in the presence of all the concerned ministers. As the authority that suggested the law, the Higher Council defended its texts and detailed provisions. At the beginning, the definition of disability faced extreme opposition because it referred to environmental obstacles and attitudinal barriers that prevent people from exercising their fundamental rights or basic freedoms. There were also deep objections to including people with psychosocial disabilities in the definition; some people thought that this group did not have a ‘disability’ but were ill people who would not be covered by the provisions of this law. In the same vein, deep objections were raised to the article stating the end of institutionalization, which would involve deinstitutionalization over the next ten years and finding inclusive alternatives for institutionalized persons. The representatives of the Higher Council had to give convincing answers addressing these queries. The Higher Council had held a number of meetings with several officials for this purpose and had prepared position papers on these controversial points. The negotiations resulted in the government accepting the bill as it was proposed, and it was sent to the House of Representatives to be discussed and adopted. A new round of marathon-like activities began to lobby members of Parliament before they discussed the law. The Higher Council held a number of meetings

228  Muhannad Alazzeh with MPs to introduce the most significant provisions of the bill and its importance in satisfying the latest developments in the field of human rights and disability. The bill also held Jordan true to its international commitments in ratifying the Convention on the Rights of Persons with Disabilities and publishing it in the official gazette in 2008. At this time, the Higher Council faced counter-pressure actions from the owners of for-profit and private institutions since the provisions requiring deinstitutionalization threatened their short- and long-term interests. This created a battle of politics and rights, which continued until the discussion of the bill by the legal committee in the House of Representatives. More than ten discursive sessions were held during which the Higher Council refuted all arguments and presented scientific and knowledge-based evidence supporting each provision. In May 2017, the House of Representatives discussed the bill over two morning and evening sessions. Heated arguments arose about texts regarding deinstitutionalization, though ultimately the law was adopted as it came from the government and in the phrasing proposed by the Higher Council. The Higher Council’s advocacy journey was not over as the law was sent to the Senate which, in turn, discussed the law through its legal committee and through its assembled members. The discussion ended with an adoption of the law as it had arrived from the House of Representatives. In June 2017, a royal decree was issued endorsing Law No. 20 of 2017 on the rights of people with disabilities and it was published in the official gazette, to be enforced in September 2017. This ushered in a new stage of advocacy and lobbying activism in order to guarantee the implementation of the provisions. In application of article 33 of the CRPD, the law made the Higher Council for the Rights of Persons with Disabilities (as it was renamed) the national coordinating mechanism and the government’s source of technical knowledge on disability. Law No. 20 of 2017 on the rights of people with disabilities introduced new concepts, which could humbly be described as surpassing what was included in the CRPD. These include a comprehensive definition of ‘disability’, such as physical, psychological, sensory, intellectual, visual, hearing and other disabilities that arise as a result of the interaction with and reaction to environmental obstacles and attitudinal barriers that limit a person’s ability to enjoy their rights and freedoms. It also refers to whatever factors limit a person’s ability to practise daily life activities. The law features a non-exhaustive list of examples of these activities, such as eating; drinking; taking medication; self-care; walking; oral, visual and written communication; working; and learning and training. The law also recognizes temporary disabilities and prohibits discrimination based on these. In addition, it includes an innovative definition or concept of violence, as it expands the scope of legal protection for people with disabilities against all types of violence: it defines violence as physical or psychological abuse and/or preventing the person from practising a right or a freedom based on a disability or because of it. In an unprecedented step, the law also recognizes the rights of people with disabilities to give free, informed consent to all actions regardless of their nature or basis. This consent is defined as ‘the acceptance of the person to do an action after he/she has been informed of the action, its results, consequences

Advocacy in Jordan  229 and available alternatives in a manner that they would understand’. By this law, all medical practices regardless of their purpose require the free, informed consent of the person with a disability. In this context, it is no longer possible to place a person with a disability in health centres or welfare institutions without their free and informed consent. The philosophy of the law and the approach it adopts follow the anti-­ discrimination methodology, which the law includes in all its texts and provisions. It is the first law to be enacted in the Arab region and in several countries beyond which has a philosophy based on anti-discrimination. It also features provisions that guarantee its implementation and effective monitoring. In an unprecedented legislative step in the Arab region, this law outlines clear timelines by which every executive authority must commit to their obligations by law. The most prominent of these is setting a ten-year plan within a year of the law’s enforcement in order to deinstitutionalize people with disabilities. This is in addition to the ten-year inclusive education plan, which also has to be prepared within a year of the new law’s enforcement date. The same applies to obligations on the premises of private, government and volunteer sectors. The law forces these organizations to ameliorate the situation in their facilities in a time period that does not exceed five years so that they are easily and independently accessible by people with disabilities.

The future for people with disabilities: the permanent need for advocacy Advocacy is the primary tool that the civil movement and the Higher Council for the Rights of Persons with Disabilities have used so far to achieve their gains in Jordan at the political, legislative and decision-making levels. In the past decade, different tactics have been used to achieve our purposes. We prepared analytical and legal papers on Jordan’s national legislation and compared this with the Convention on the Rights of Persons with Disabilities and other human rights conventions and international bills of rights. These papers were used as lobbying tools demanding the harmonization of national legislation with the international commitments Jordan has adopted. Negotiation skills were integral to our success in addition to always adopting the role of the devil’s advocate in order to think ahead and imagine opposing views so as to deal with them wisely and accordingly. The pivotal position papers were prepared to defend the most controversial points in the law and in the other advocacy campaigns. They played a major role in enhancing demands, underlining their importance and their expected impact. The various media outlets were always a key element that contributed to communicating accurate messages to the targeted sectors at the right times. The use of model legislative practices in other countries also had a big impact in convincing decision-makers as to the logic of our demands and their achievability. These and other tactics accompanied our advocacy and lobbying work in the different stages of change that the disability movement went through in Jordan: it started with the adoption of the Convention on the Rights of

230  Muhannad Alazzeh Persons with Disabilities and continued with the amendments to the Constitution, the penal code and other laws and regulations in addition to a number of institutional practices. It ended with the process of legislative reform that was crowned with the adoption of the new law on the rights of people with disabilities. Despite all this, the journey of advocacy and mobilization did not and will not stop at this point: continuous efforts have to be exerted in order to guarantee that the implementation of the provisions of the law by the concerned authorities is done correctly and meticulously. This will ensure that the issue of disability remains on the agenda of the executive authorities and will guarantee that they do not retreat from their commitments. Since the enforcement of the new law, the Higher Council for the Rights of Persons with Disabilities has been striving to exercise its role as the national coordinating mechanism for the rights of people with disabilities. Awareness campaigns to introduce the law have been launched, targeting government authorities since they are responsible for its implementation. The campaigns are also aimed at civil society organizations, in particular organizations of people with disabilities, since they are the source of experience and knowledge in the area, and can best monitor the commitment of the concerned authorities to the provisions of the law from their perspective. The Higher Council holds periodic meetings with first-line executive officials to follow up on each authority’s implementation of the law. In the same vein, the Higher Council has signed memorandums of understanding to coordinate joint work with various ministries, including the Ministry of Education, the Ministry of Social Development and the Ministry of Health. The memorandums oblige the different authorities to cooperate with the Higher Council and to take specific steps within clear timelines to execute the commitments stated in the law. These meetings and agreements are considered a successful tactic to motivate these authorities to accelerate the execution of their commitments. It is also viewed as a good way to assign roles and distribute responsibilities in such a way that ensures efforts are integrated and there is no overlapping of competencies, an issue that the disability field suffered in the lead-up to the adoption of the new law. Despite what has been achieved in Jordan and our sense of pride about it, we have no doubt at all that we have just started on this long journey of mainstreaming the rights-based approach in legislation, policies, plans, programmes and in institutional and individual practices. The impact of the hegemony of the charitable and medical welfare model that was dominant for many decades in the area of disability is still obvious in several political and practical aspects. We are not anxious about this; we fully understand that changing a specific culture and mentality prevalent in a specific field requires a lot more effort and time than many concerned people are eager to expend, especially in the fields of human rights and disability rights. Our journey towards change and reform in the field of disability started recently. We have shown that a well-planned advocacy campaign will definitely lead to achieving the aspired change, whether in the short or long run. I believe that the key to successful advocacy is to place oneself in the shoes of the person targeted in the plan in order to know them better, know how they think and what

Advocacy in Jordan  231 their fears are. This, in turn, will enable the advocate to harness the best means to deal with the person and to address any misgivings they may have. In the end, the truth is that people with disabilities are the primum mobile and the main element in the process of change concerning their rights and issues. Their active participation in decision-making, planning, implementing and monitoring plans and programmes is their badge of legitimacy and the secret to success in all projects they embark on.

References Al-Azzeh, M. ed., 2012. Civil society report on the status of implementation of the Convention on the Rights of Persons with Disabilities in Jordan: ‘mirror of reality and a tool for change’. http://www.cisjordan.org/Documents/DRI RFA FINAL English/Attachment V. CRPD Civil Society Status Report FINAL ENG.pdf. Available from: http://www.cisjordan.org/Documents/DRI%20RFA%20FINAL%20English/ Attachment%20V.%20CRPD%20Civil%20Society%20Status%20Report%20 FINAL%20ENG.pdf [Accessed 25 September 2018]. Disability Rights Education & Defense Fund (DREDF), 2000. Jordan – law for the welfare of disabled persons. Jordan Information Bureau. Available from: https://dredf. org/legal-advocacy/international-disability-rights/international-laws/jordan-law-forwelfare-of-disabled-persons/ [Accessed 25 September 2018]. Dupire, C. 2018. Jordan’s law on rights of people with disability recognised at global summit. The Jordan Times, 1 August. Available from: http://www.jordantimes.com/ news/local/jordans-law-rights-people-disability-recognised-global-summit [Accessed 28 December 2018]. Higher Council for Affairs of Persons with Disabilities (HCAPD), 2018. 2010–2015 national strategy for people with disabilities. Ministry of Planning and International Cooperation, Jordan. Available from: http://inform.gov.jo/en-us/By-Date/ReportDetails/ArticleId/86/2010-2015-National-Strategy-for-People-with-Disabilities [Accessed 28 December 2018]. Higher Council for the Rights of Persons with Disabilities (HCD), 2018. [website] http:// hcd.gov.jo/ar [Accessed 25 September 2018]. Higher Council for the Rights of Persons with Disabilities (HCD), 2011. Takafo campaign documentary [online]. Youtube. Available from: https://www.youtube.com/ watch?v=zXEBMOUZ7PQ [Accessed 25 September 2018]. Independent Election Commission, 2016. Constitution of Jordan. Available from: https:// iec.jo/sites/default/files/Jordan%20amended%20constitution%20%202016%20EN_0. pdf [Accessed 25 September 2018]. United Nations (UN), 2005. King Abdullah II of Jordan to accept FDR International Disability Award at United Nations, 23 March, note No. 5926, 21 March. New York, NY: UN. Available from: http://www.un.org/press/en/2005/note5926.doc.htm [Accessed 25 September 2018]. United Nations (UN), 2006. Convention on the Rights of Persons with Disabilities (CRPD). A/RES/61/106. New York, NY: UN. Available from: https://www.un.org/ development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities. html [Accessed 25 September 2018].

16 Transforming disability law and policy in Peru The role of civil society Alberto Vásquez Encalada

Introduction The landscape of the rights of people with disabilities has changed significantly in Peru over the last decade. Since the entry into force of the UN Convention on the Rights of Persons with Disabilities (CRPD) on 3 May 2008, Peru has adopted a new regulatory and policy framework for promoting, protecting and ensuring the rights of people with disabilities, including a new general law on people with disabilities, a national disability survey and various national programmes. Although the situation is still far from satisfactory, these measures constitute a great improvement in the disability rights agenda, and a solid foundation to the devolvement of new programmes and actions to improve the lives of people with disabilities in Peru. The work of the disability rights movement in Peru has been key to these improvements. Most achievements were accomplished thanks to the initiative and efforts of civil society organizations, particularly organizations of people with disabilities. The 2012 General Law on Persons with Disabilities, for example, is the result of four years of advocacy work carried out by a national coalition of civil society organizations, which not only drafted the bill but also proposed it as a citizens’ initiative and actively advocated for its adoption. It is also noteworthy that reforms were achieved despite the government’s lack of commitment and willingness to advance disability rights. Against this background, this chapter aims to tell the story of the transformation of the disability legal and policy framework in Peru in order to identify success factors. The emphasis is on the analysis of stakeholders and strategies as well as on the examination of the process itself and its outcomes. Desk-based research was undertaken for the preparation of this chapter, complemented with interviews with key informants who participated in the process. Having been one of the protagonists of this story, as president of a non-governmental organization (NGO) and former parliamentary adviser, the chapter also reflects my memories of the process and my own views on the motivations of some of the actions.

Transforming disability law in Peru  233

The context Peru is a constitutional republic in western South America. Its total population is estimated at 32.1 million, more than a third of whom live in its capital and largest city, Lima. During the last decades, the Peruvian economy has experienced sustained growth, which has allowed the country to implement active poverty reduction programmes and to increase its social expenditure on health and education. As a result, poverty rates in Peru have dropped significantly over the past 15 years, from 58.7 per cent (2004) to 20.7 per cent (2017), positioning Peru as an upper middle-income country (World Bank 2017). Nevertheless, the situation of a large part of the population remains moderately vulnerable, given the lack of formal employment and the limited coverage of basic services. People with disabilities have been estimated to represent 5.4 per cent of the Peruvian population and they experience significant challenges in several domains (National Institute of Statistics and Information 2012, p. 42). For example, the gaps in educational attainment and literacy rates between people with disabilities and those without disabilities are more than 20 per cent, with 29.1 per cent of people with disabilities estimated as illiterate (National Institute of Statistics and Information 2016, p. 49). Similarly, 54.8 per cent of people with disabilities are not part of the economically active population and only 11.4 per cent of people with disabilities have access to suitable rehabilitation services (National Institute of Statistics and Information 2016, p. 63, 2012, p. 120). Available statistics also show worse results for girls and women with disabilities in all areas. Before ratifying the CRPD, Peru already had in place a legal and policy framework on the rights of people with disabilities. The main piece of legislation was the 1998 General Law on Persons with Disabilities, Law No. 27050, which defined disability from a medical perspective and was focused on ensuring the socio-economic inclusion of people with disabilities in areas such as health, education, sport and employment. Law No. 27050 also created the National Council for the Integration of Persons with Disabilities (CONADIS), a collegiate body with representation of several ministers and organizations of people with disabilities, responsible for leading policies for the ‘prevention, care and social integration’ of people with disabilities (art. 8(a)). While Law No. 27050 was partially amended in 2004 to incorporate affirmative action measures (Law No. 28164), the philosophy and approach of the law remained the same until its abolition in 2012. In January 2008, Peru ratified the CRPD and its Optional Protocol. According to the Peruvian Constitution, treaties formalized by the state and in force are part of national legislation (art. 55), and the fundamental rights recognized in the Constitution must be interpreted in light of the human rights treaties ratified by the state (Fourth Final and Transitory Provision). In addition, the Constitutional Court has interpreted that human rights treaties hold a constitutional status, albeit below the Constitution (Case No. 0047-2004-AI/TC). In this regard, by ratifying the CRPD, the Peruvian government introduced a very powerful tool for advocacy for civil society.

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The Peruvian disability movement The Peruvian disability movement dates back to the 1970s. While many organizations, such as the National Union of the Blind (Unión Nacional de Ciegos), the Deaf Association of Peru (Asociación de Sordos del Perú) and the Christian Fraternity of the Sick and the Disabled (Fraternidad Cristiana de Enfermos y Minusválidos), were established in earlier decades, it is during the seventies that organizations of people with disabilities consolidated their networks and actions, advocating for the adoption of legislation and policies beyond the issue of rehabilitation (Portalanza 2007, pp. 33–40). The 1979 Peruvian Constitution reflects this awakening by the inclusion of a specific provision on people with disabilities, which stresses that ‘incapacitated persons … due to a physical or mental impairment’ have the right to respect of their dignity and to a ‘legal framework for their protection, attention, vocational rehabilitation and security’. Following this success, on 16 October 1980, different organizations of people with disabilities organized the ‘Great march of solidarity for the rights of the person with disabilities’, which involved more than five thousand people with disabilities, family members and allies.1 Considered by Peruvian activists as a watershed event, this mobilization led to the First National Conference for the Rights of the Disabled, opened by the Peruvian President, Fernando Belaúnde Terry, on 23 March 1981. During this conference, the National Confederation of Persons with Disabilities of Peru (CONFENADIP) was founded, and today it remains the main umbrella organization of people with disabilities in Peru.2 This momentum, in addition to the celebration of the International Year of Disabled Persons in 1981, facilitated the adoption of the first laws benefiting people with disabilities.3 Yet by the end of the eighties, the vigour of the Peruvian disability movement was in decline. The political and economic crisis had an impact on the capacity of organizations to operate and survive. Institutional and personal agendas also led to divisions and the weakening of solidarity (Portalanza 2007, pp. 57–66). As a result, during the nineties the associative movement lost prominence and the reforms introduced by the government of Alberto Fujimori, including Law No. 27050 of 1998, were adopted with minimal consultation. This fragmentation continued until the mid-2000s. The adoption of the CRPD represented a second awakening for the disability movement in Peru. While many representatives of the Peruvian disability movement were involved in the CRPD negotiation process, such as Wildredo Gumán from CONFENADIP and Elena Chávez from Alamo Familia, it was the final adoption of the Convention and its rapid ratification by the Peruvian government which reinvigorated the movement and rebuilt its networks. The ratification of the CRPD made clear the need to rethink the understanding of disability, to question the predominant medical approach in law and policies, and to explore ways of working together towards its implementation (see Nuñez 2015, pp. 37–38). The ratification of the CRPD also opened up funding opportunities. In June 2008, the newly created Disability Rights Fund, a global grant organization

Transforming disability law in Peru  235 supporting the human rights and inclusion of people with disabilities, announced its first round of funding for organizations of people with disabilities in Peru. In that opportunity, seven national and local organizations received funding, including CONFENADIP (Nuñez 2015, pp. 40–42). The entry of the Disability Rights Fund into the country proved to be pivotal to the process of law and policy reform that would come in the following years.

The new General Law on Persons with Disabilities The CRPD imposes on state parties a duty of legal harmonization. States are obliged to align their national laws and policies to the principles and rights enshrined in the Convention. For that purpose, states must adopt all appropriate legislative, administrative and other measures for the implementation of the rights recognized in the CRPD; and take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities (art. 4.1). This duty of legal harmonization generated a renewed impetus in civil society to work towards the adoption of a new comprehensive national law on the rights of persons with disabilities. In 2009, with the financial support of the Disability Rights Fund, two important organizations embarked on discussions for a new General Law on Persons with Disabilities to replace Law No. 27050 of 1998: CONFENADIP, composed of 200 local organizations and 24 regional federations, led by Wildredo Guzmán, chair of Disabled Peoples International; and Society and Disability – SODIS (Sociedad y Discapacidad), an NGO funded and led by Javier Diez Canseco, a highly renowned politician and human rights activist and a person with disabilities himself (Disability Rights Fund 2013, p. 25). CONFENADIP and SODIS made an alliance to draft a new General Law on Persons with Disabilities and to propose the bill as a citizens’ initiative.4 The drafting of the bill took eight months. SODIS directed the process in consultation with the members of CONFENADIP and other allied organizations. Acting as a SODIS consultant, I was in charge of the drafting of the bill and systematization of contributions. Many changes were introduced to the initial draft, keeping in mind the need to balance short-term and long-term goals for legal harmonization and political expediency (see International Disability Alliance 2017, p. 12). Later, in January 2010, SODIS and CONFENADIP launched a campaign to collect the 49,785 signatures required to propose the bill as a citizens’ initiative (0.3 per cent of the electoral register as requested by law). The organizations managed to get on board the director of El Comercio, the most important media group in Peru, who not only signed as co-author of the petition, but also committed to disseminate the citizens’ initiative through the newspaper (Canseco 2012). CONFENADIP mobilized disability and civil society organizations for 10 months to collect signatures, engaging with grassroots organizations and the

236  Alberto Vásquez Encalada public to discuss the future law and proposals for content. Signatures were collected at concerts, events, universities and public squares (Nuñez 2015, p. 16). A broader platform of organizations of people with disabilities, NGOs and human rights organizations was also created to support these efforts, which permitted the involvement of important organizations of people with disabilities that were not affiliated with CONFENADIP (called the Support Network to the Campaign for a New Law on Persons with Disabilities; see Coordinadora Nacional de Derechos Humanos 2010). This process served to raise awareness, consolidate the movement and build consensus and shared knowledge of the CRPD (International Disability Alliance 2017, p. 12). The Peruvian Ombudsman Office, the Catholic Church and online media also supported the process. In October 2010, 85,000 signatures were submitted to the National Electoral Jury, the entity in charge of evaluating and processing citizens’ initiatives (ultimately about 140,000 signatures were collected; Coordinadora Nacional de Derechos Humanos 2010). In March 2011, the bill was formally sent for debate to the Congress Committee on Health, Population, Family and Persons with Disabilities (Bill No. 04707/2010-IC). The debate and approval at Congress was not free of setbacks. The proposal was initially archived, as the Committee on Health, Population, Family and Persons with Disabilities did not vote on the bill before the new parliamentary period. Nevertheless, the elections held in 2011 created a new window of opportunity; Javier Diez Canseco, chair of SODIS, was elected as congressperson along with another four people with disabilities – the highest representation of people with disabilities within the Peruvian Congress in history. Similarly, the election of a new administration, taking up functions in July 2011, led to the appointment of Wilfredo Guzmán, chair of CONFENADIP, as president of the National Council for the Integration of Persons with Disabilities. The newly composed Congress took the issue of disability away from the Committee on Health, Population, Family and Persons with Disabilities and designated it to the newly created Committee on Social Inclusion and Persons with Disabilities, to which I was appointed as principal adviser. As one of its first decisions, the Committee decided to reopen the proposal of the citizens’ initiative and place it at the top of its agenda. The debate of the proposal lasted many weeks and involved consultations with government agencies and civil society.5 New law proposals were submitted and amalgamated with the original citizens’ initiative.6 The new General Law on Persons with Disabilities, Law No. 29973, was finally adopted in December 2012.7 It is an omnibus law consisting of 114 provisions, which cover a broad variety of topics, from specific rights to institutional frameworks. It replaced Law No. 27050 of 1998 and modified other pieces of legislation, including the Civil Code, the General Health Law, the General Law of Education, the University Law, the Law on Radio and Television, the Labour Law, the Law of Bases of the Administrative Career and the Law on the Judicial Career, among others, so that they incorporate a disability approach and make disability a cross-cutting issue in all state policies.

Transforming disability law in Peru  237 The new law introduced a veritable shift in approach to the rights of people with disabilities based on the standards enshrined in the CRPD. Indeed, Article 3(2) of the law sets out explicitly that the rights of people with disabilities are interpreted in accordance with the principles and rights contained in the Universal Declaration of Human Rights, the CRPD and other international human rights instruments ratified by Peru. Major advances include: •• •• ••

••

•• •• ••

•• •• •• •• •• ••

a definition of persons with disabilities in line with the approach of the CRPD (art. 2); the obligation to provide reasonable accommodation and the recognition of its denial as a form of discrimination (arts 8.2, 9.1, 37.1, 38, 50); equal recognition before the law of persons with disabilities across all aspects of life, including with respect to the right to property, inheritance, contracts and access, on an equal basis with others, to insurance, bank loans, mortgages and other forms of financial credit, as well as the right to marry and decide freely on the exercise of sexuality and fertility (art. 9); the creation of a Special Commission for the reform of the Civil Code concerning legal capacity, which mandates the participation of representative organizations of persons with disabilities, among others (2nd Final Additional Provision); recognition of the right to live independently and to be included in the community (art. 11); the obligation to consult organizations of persons with disabilities before the adoption of any law or policy (art. 14); the obligation to ensure that all environment, buildings, transport, information and communications are accessible for persons with disabilities, stipulating specific provisions for its progressive implementation, including the adoption of a national plan on accessibility (arts 15–25); recognition of the right to access health benefits and services on an equal basis with others, in replacement of the outdated rehabilitation approach (art. 25–27); recognition of the right to inclusive education (art. 35); the introduction of employment benefits and quotas in the public and private sectors (arts 48 and 49); amendments to social protection schemes, including the introduction of a non-contributory pension scheme for persons with disabilities, although limited to persons with ‘severe’ disabilities living in poverty (art. 59); the reform of the institutional framework concerning persons with disabilities, including the functions and composition of CONADIS, and regional and local offices for persons with disabilities (arts 64, 65, 69, 70 and 72); designation of the Office of the Ombudsperson (Defensoría del Pueblo) as the independent framework to monitor the implementation of the CRPD in accordance with Article 332 of the CRPD (art. 86).

Law No. 29973 was entered into force on 25 December 2012 and the regulations for implementation were adopted in April 2014.

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Other legal and policy outcomes The Peruvian disability movement seized the momentum created by the citizens’ initiative to promote other law and policy instruments advancing the rights of people with disabilities. This resulted in legislation on the rights of persons with mental health problems (Law No. 29889 of 2012) and on guide dogs for persons with visual impairments (Law No. 29830 of 2012) as well as the implementation of a national disability survey and three disability-specific performance-based budget programmes.8 Moreover, as set out above, within the new General Law on Persons with Disabilities were planted the seeds for another major legal reform, notably of the Civil Code with respect to legal capacity (Legislative Decree No. 1384 of 2018). Law No. 29889 of 2012 on the rights of persons with mental health problems is considered to be landmark legislation (Toyama et al. 2017). It amended Article 11 of the Law on General Health and foresaw a major reform of mental health services. The bill was proposed by the chair of the Committee on Social Inclusion and Persons with Disabilities, congresswoman Rosa Mavila, and drafted in consultation with Alamo Familia, an organization of people with psychosocial disabilities, academics and community mental health activists (World Bank 2018). The innovations of Law No. 29889 include: •• •• •• •• ••

recognition of the right of everyone to the highest standard of mental health, without discrimination; guarantees for the availability of programmes and services for mental health care countrywide, including interventions related to promotion, prevention, recovery and rehabilitation; recognition of the rights of persons with psychosocial disabilities, including their right to live independently and to be included in the community; the adoption of a community-based care model in mental health care; the prohibition of involuntary commitment and treatment in mental health, except in cases of emergencies or concerning persons with addictions – an aspect highly criticized by civil society.

Law No. 29889 of 2012 explicitly requests the Executive Branch to adopt specific measures to transform mental health service delivery into a community-based healthcare model, including restructuring mental healthcare services at the primary and secondary care level; creating community-based healthcare services; expanding insurance coverage to include mental health; ensuring the availability of psychiatric medication; and implementing de-institutionalization for those living in institutions (First Complementary and Final Provision). Regulations for the implementation were adopted in October 20159 along with a performance-based budget programme on mental health.10 A national disability survey and performance-based budget programmes on education, health and employment of people with disabilities were also adopted during the debates of the General Law on Persons with Disabilities. As a

Transforming disability law in Peru  239 congressman of the ruling party, Javier Diez Canseco successfully advocated for the inclusion of those measures in the national budget law of 2012 (see Canseco 2011).11 The results of the National Disability Survey, published in 2013, facilitated the design of performance-based budget programmes on education, health and employment of people with disabilities as well as strengthened efforts on data collection.12 In addition, using SODIS as a vehicle, Javier Diez Canseco pioneered training programmes for judges and prosecutors at the Judicial Academy and introduced university courses on the rights of people with disabilities.13 Regretfully, Javier Diez Canseco passed away in May 2013. By the end of 2013, the agenda of the disability movement fell once again into fragmentation. While a small group of organizations of people with disabilities and NGOs got involved in the law reform process of the Civil Code, aiming to recognize the full legal capacity of people with disabilities, most organizations of people with disabilities turned towards capacity-building and development projects benefiting their own members. The Special Commission for the reform of the Civil Code concerning the legal capacity of persons with disabilities (CEDIS) held its inaugural session in March 2014, composed of representatives of the executive, legislative and judicial branches, the Office of the Ombudsperson, academia and three civil society organizations (Alamo Familia, Peruvian Down Syndrome Society and SODIS). In February 2015, CEDIS approved a draft reform of the Civil Code amending and repealing more than 80 provisions, which was forwarded to the Commission of Justice and Human Rights and placed as a priority on its agenda.14 However, similarly to the process of the new General Law on Persons with Disabilities, the proposal was archived with the arrival of the new administration in July 2016. A new multiparty bill, based on the CEDIS proposal and supported by a broader coalition of civil society organizations, was presented in January 2017.15 Due to the delay in Congress, the Executive requested legislative powers to adopt the reform in May 2018, which were granted by Law No. 30823. Following this delegation, the Executive adopted in September 2018 the Legislative Decree No. 1384 reforming the Civil Code, the Civil Procedural Code and the Notary Act. The legislative decree, which has the same hierarchy level of a law, recognizes the full legal capacity of all people with disabilities, abolishes disability-related guardianship and introduces different forms of supported decision-making. The Special Rapporteur on the Rights of Persons with Disabilities (2018) called this reform a ‘milestone’ in the recognition of rights of people with disabilities and an ‘example for all States to follow’. Currently, the main platform for civil society collaboration on the rights of people with disabilities is the Working Group on Disability and Rights of the National Human Rights Coordinating Committee (Mesa de Discapacidad de la Coordinadora Nacional de Derechos Humanos), regrouping 16 organizations working on the rights of people with disabilities, including organizations of people with disabilities, human rights organizations and NGOs.16 The Working Group was created in 2015 to try to improve coordination within civil society. Most of its members campaigned together for the adoption of the General Law on Persons with Disabilities.

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Success factors for disability advocacy and social change The adoption of Law No. 29973 and other policy measures represented a significant triumph for the Peruvian disability movement. As discussed, civil society has been the driving force behind most disability law and policy reforms in the last decade. Moreover, in many cases, they managed to get their proposals adopted despite the lack of political will and opposition presented by the Executive Branch. A number of success factors can be identified. First, the existence of an organized civil society. The Peruvian disability movement dates back several decades and, like all social movements, has experienced highs and lows. The main umbrella organization, CONFENADIP, has played a key role in law and policy reform since the eighties, being the main force agglomerating efforts towards systemwide change. While other organizations of people with disabilities and NGOs possessed expertise on human rights and experience in advocacy, CONFENADIP was the only organization with the know-how and capacity to mobilize people across the country. Furthermore, thanks to its links with international processes and stakeholders, it had a better capacity for resource mobilization and networking. That said, the existence and acceptance of smaller organizations facilitated a more inclusive process, ensuring that the voices of the most marginalized groups were taken into account (e.g. organizations of people with psychosocial disabilities and intellectual disabilities). During the advocacy process, these subgroups were made visible as part of the ‘we’ and gained their own voice for self-representation (Nuñez 2015, pp. 48–49). In fact, the general sense of ownership over Law No. 29973 among the Peruvian disability community reflects the multiplicity of civil society organizations involved. Many of these smaller organizations were not keen to work with CONFENADIP but they saw a window of opportunity they could not miss. While some joined efforts to support the ongoing process, others decided to promote new law proposals that were finally amalgamated within the original citizens’ initiative. A second crucial success factor was having a shared agenda. Like in the eighties, when the International Year of Disabled Persons mobilized civil society to advocate for change, the adoption of the CRPD represented a major push towards law and policy reform. The CRPD challenged the status quo and created momentum for change. Its ratification – a default response by the government – opened spaces for resource mobilization and capacity building that civil society opportunely seized. As a result, organizations of people with disabilities developed and strengthened their knowledge, skills and abilities to advocate. This capacitybuilding process also permitted a shared understanding of the barriers faced by people with disabilities and state obligations towards their rights. The CRPD thus facilitated a common voice within the movement. Third, leadership among the disability community played a decisive role in mobilizing the bases and ensuring a coherent voice. Javier Diez Canseco (SODIS) and Wildredo Guzmán (CONFENADIP) were key in articulating

Transforming disability law in Peru  241 a vision of change with clear long-term goals, strategies and actions, which the disability community could follow. Moreover, because of their experience in politics and international processes, they developed communications and negotiation skills that helped the disability community to reach a broader audience and levelled the field in relation to government counterparts. The death of Canseco in 2013 and the exit of Guzmán from CONADIS in 2014 left a significant gap in the leadership of the disability movement. In fact, when Guzmán left CONFENADIP to chair CONADIS in 2011, the former lost strength and weight in the debates of the citizens’ initiative which they had proposed themselves. Strategic alliances represent a fourth success factor. From the outset, the process was thought of as a process of multiple actors. The main proponents of the citizens’ initiative were CONFENADIP (an umbrella organization of people with disabilities) and SODIS (an NGO with technical expertise). Soon after, they were joined by a broader platform of organizations of people with disabilities, non-government and human rights organizations, which ensured a wider reach and greater legitimacy. In addition, strategic alliances were forged with organizations usually disconnected from the disability movement (e.g. newspapers, online media, the Catholic Church), which allowed the campaign for law and policy reform to be positioned as an issue of public interest. Fifth, windows of opportunity were seized. While legal harmonization was planned as a long-term process, the disability community took advantage of the emergence of several political opportunities to advance the law and policy reform agenda. For example, the appointment of members of the disability community to strategic public offices and posts within government facilitated a pro-disability predisposition in legal and policy formulation. Indeed, the new Committee on Social Inclusion and Persons with Disabilities, created in 2011 in the Congress, was swiftly co-opted by disability activists who dominated the agenda and prioritized the adoption of disability-related proposals. This ‘revolving door’ opportunity by which disability activists became legislators and policymakers was seized by the broader disability community to advocate for and present proposals not initially envisaged, which galvanized the broader process of change. Finally, the CRPD opened the door for funding opportunities that were not previously available. Disability Rights Fund, in particular, helped to build a stronger disability movement and supported it to campaign for law and policy reform. Both CONFENADIP and SODIS were Disability Rights Fund’s grantees, and the main funds for the advocacy for a new General Law on Persons with Disabilities came from this organization. Disability Rights Fund also called for a process of capacity building within the disability community as funding needed to be aligned with the rights-based approach to disability enshrined in the CRPD. Other funding organizations, such as Open Society and CBM, created new opportunities to promote the rights of people with disabilities, facilitating complementary processes of capacity building, advocacy and networking.

242  Alberto Vásquez Encalada

Conclusion The process of disability law and policy reform in Peru represents a successful case of change driven by the disability community. The CRPD created international momentum, which Peruvian civil society translated into concrete actions. CRPD discourse permeated within the disability movement and generated a new way to advocate for the rights of people with disabilities as well as a new way to relate to the government. This transformation of the disability movement enabled the socialization of the rights of people with disabilities within the public agenda, permitting the convergence of interests between civil society and policymakers. This chapter is an exploration of disability advocacy and the success factors for social change. It identifies a number of elements that were critical in shaping the reform process in Peru, including an organized civil society, a shared agenda, leadership, strategic alliances, seizing windows of opportunity and funding. The subsequent decline of many of these elements, and their impact in the process of change, demonstrates that they were not isolated factors operating on their own but necessary features contributing to a systemic process of change.

Notes 1 In memory of this mobilization, Law No. 23241 (1981) declared 16 October of each year as the National Day of Persons with Disabilities. 2 Its original name was the National Federation of Disabled People of Peru (Federación Nacional de Impedidos del Perú). 3 For example, Law No. 23285 (1981), labour law for people with physical, sensory and intellectual limitations; Law No. 23273 (1981), which declares 1982 as the Year of Disabled Persons; Law No. 23347 (1981), which regulates physical accessibility measures for wheelchair users; and Law No. 23509 (1981), which exempts people with disabilities from paying duties for importation of adapted vehicles (art. 60). 4 According to the Peruvian Constitution, citizens have the right to make a legislative proposal. Law No. 26300 (1994) regulates the requirement and procedures to exercise this right. 5 Peru was the third state party to the Convention to be reviewed by the Committee on the Rights of Persons with Disabilities in April 2012. Following the interactive dialogue between the CRPD Committee and the Peruvian delegation, the CRPD Committee recommended the adoption of the citizens’ initiative and to reinforce the implementation of the Convention in the country. CONFENADIP engaged actively in this review. 6 See Law Projects No. 812/2011-CR (Manuel Merino), 601/2011-CR (Jhon Reynaga) and 860/2011-CR (Gian Carlo Vacchelli), available at Congress of the Republic of Peru (2018). 7 While the bill was unanimously adopted by the Plenary in June 2012, the Executive Branch vetoed the proposal, forcing the Congress to insist on it. English translation of the law available at IDA (2016). 8 Performance-based budget programmes, known as Presupuesto por Resultado (PpR) in Peru, is a public management strategy that allows the allocation of budgetary resources to be linked to goods and services (products) and results favourable to the population, therefore allowing the impact of these resources to be measurable. 9 Adopted by Supreme Decree No. 033-2015-SA, published on 6 October 2015. 10 Performance-based budget programme No. 0131: ‘Control and prevention on mental health’.

Transforming disability law in Peru  243 11 Law No. 29812, Budget Law for the Public Sector for the Fiscal Year 2012, 42nd Final and Complementary Provision. 12 Since 2014, the National Institute for Statistics and Information has included a disability module in the National Household Survey and the National Demographic and Family Health Survey. The disability-related results are published in stand-alone publications. 13 The courses were developed with the support of the Open Society Foundation. 14 Bill No. 04601/2014-CR. 15 Bill No. 00872/2016-CR. 16 Andares, Asociación de Abogados Invidentes, Autismo Perú, Aynimundo, Centro de Empoderamiento de Personas con Discapacidad – CEMPDIS, Clínica Jurídica de Discapacidad y Derechos Humanos de la PUCP, Comisión de Damas Invidentes del Perú – CODIP, Colectivo 21, Federación Nacional de Mujeres con Discapacidad del Perú – FENAMUDIP, FRATER, Musas Inspiradoras de Cambios, Paz y Esperanza, Plan Internacional, Perú Equidad, Sociedad y Discapacidad – SODIS y Sociedad Peruana de Síndrome Down – SPSD.

References Canseco, J.D., 2011. Visibles y sujetos de derecho. La República, 7 November. Canseco, J.D., 2012. Mesa servida: derechos y discapacidad. La República, 25 June. Available from: https://www.alainet.org/es/active/55931 [Accessed 28 December 2018]. Congress of the Republic of Peru, 2018. Projects of law. Available from: http://www. congreso.gob.pe/pley-2016-2021 [Accessed 28 December 2018]. Coordinadora Nacional de Derechos Humanos, 2010. Recolectan firmas necesarias para una nueva Ley de Personas con Discapacidad, 13 October. Available from: http:// derechoshumanos.pe/2010/10/recolectan-firmas-necesarias-para-una-nueva-ley-depersonas-con-discapacidad/ [Accessed 28 December 2018]. Disability Rights Fund, 2013. One in seven: how one billion people are redefining the global movement for human rights. Boston, MA: Disability Rights Fund. International Disability Alliance (IDA), 2016. Peru general law on persons with disabilities [online]. Available from: http://www.internationaldisabilityalliance.org/es/ resources/peru-ley-general-de-la-persona-con-discapacidad-ley-no-29973 [Accessed 28 December 2018]. International Disability Alliance (IDA), 2017. Report on first follow up mission to Peru: monitoring implementation of the CRPD Committee’s recommendations. Geneva: IDA. National Institute of Statistics and Information, 2012. First national specialized survey on disability. Lima. National Institute of Statistics and Information, 2016. Peru: characterization of the living conditions of the population with disability. Lima. Nuñez, A., 2015. Nothing about us, without us: agency and collective action within the Peruvian organizations of persons with disabilities, regarding the creation, approval and regulation of the General Law on Persons with disabilities, Law No. 29973. MA thesis. Pontifical Catholic University of Peru. Portalanza, J., 2007. La razón de la memoria. las personas con discapacidad en la historia. Lima: CONFENADIP. Special Rapporteur on the Rights of Persons with Disabilities, 2018. Peru: milestone disability reforms lead the way for other states, says UN expert. 4  September. Geneva: United Nations. Available from: https://www.ohchr.org/EN/NewsEvents/Pages/ DisplayNews.aspx?NewsID=23501&LangID=E [Accessed 28 December 2018].

244  Alberto Vásquez Encalada Toyama, M., Castillo, H., Galea, J. T., Brandt, L. R., Mendoza, M., Herrera, V. et al., 2017. Peruvian mental health reform: a framework for scaling-up mental health services. International Journal of Health Policy and Management, 6 (9), 501–508. World Bank, 2017. Peru, country profile [online]. Available from: https://data.worldbank. org/country/peru [Accessed 10 May 2018]. World Bank, 2018. Healing minds, healing lives. a movement for community-based mental health care in Peru. Lima and Washington, DC: Global Mental Health Initiative.

17 The fight to be steadfast Bolivian disability activists Marianne Hedlund

Background In 2016, Bolivian disability activists became known internationally for their fight for a public disability pension, the right to be accepted as citizens and the right to a decent standard of living. All over the world, international news broadcast the activists’ fight and the response from the Bolivian government and riot police. The most active media outlet was the British Guardian. This news outlet had been following the Bolivian disability activists’ fight over years and by 2012 had published on the caravan of approximately 50 people with disabilities, which ended up as a 1,000-mile, 100-day trek through part of Bolivia in order to protest near government offices for rights for people with disabilities (Carroll 2012). In 2016, the Guardian followed up this report of the Bolivian disability activists’ fight by reporting ‘The March’ (La Marcha). During 2016, disability activists once more organized a caravan and made a demonstration walk towards La Paz, the main city of Bolivia and the location of Bolivian administration and government (Guardian 2016). The filmmakers Violeta Ayala and Dan Fallhaw made a documentary film from this caravan and demonstration exposing, through close-up scenes, the violent actions of the riot police of Bolivia towards the disability activists. In this chapter, I undertake an analysis of information about the marches in 2012 and 2016 among Bolivian disability activists. The aim is to get a deeper understanding of the disability activists’ fight for acknowledgement as citizens in Bolivian society. Their struggle is analyzed through the theoretical lens of social citizenship (Marshall 1950). According to Marshall, social citizenship is a status bestowed on those who are full members of a community. Those who possess this status are equal with respect to the rights and duties in society. In this chapter, the fight of the Bolivian disability activists is analyzed as a fight about disability rights and an adequate pension and consequently a fight about social citizenship. The chapter examines the 2012 and 2016 protests through the narrative of one of the leaders of the 2012 protests, Carlos Mariaca, who gave permission for the interview on which this narrative is based to be used and stated clearly that he did not want to be anonymized. The interview with Carlos was done in July 2017 and focuses on the 2012 protests. Mariaca was a key organizer of these protests but was not involved with the second mobilization. His perspectives on the protest

246  Marianne Hedlund are complemented with information drawn from a combination of documentary analysis (Scott 1990) featuring Ayala and Fallhaw’s documentary film The Fight (released in 2017), which captures the 2016 protest mobilization. In addition, photos, available online documents (some in Spanish, some in English) and reports from activists and a local disability organization who were critical to the organizing of these protests have been drawn on to inform the chapter’s analysis and arguments. This set of additional material was retrieved during August 2017 and August 2018. The chapter analyzes these two different protest mobilizations and highlights their differences, divergences and continuities. It describes the disability rights activists involved in each of the marches, as there was little overlap between the two mobilizations. Finally, the chapter illustrates that even though the protests in 2012 and 2016 had different political tactics and strategies, resulting in different outcomes, they remained similar in nature, structure and intent. That is, these two key moments of mobilization were generated by disability activists’ struggles for social citizenship and the fair, just and reasonable redistribution of state resources to fully realize the social participation of disabled people in Bolivia.

Understandings of disability in Bolivia I argue elsewhere that different approaches to understanding disability as a phenomenon and securing welfare for people with disabilities can coexist in society (Hedlund 2000, 2009). This means a society can respond in different ways when met with claims from activists protesting to improve disability rights and to ensure decent living conditions. I analyze this activist fight through the lens of a Scandinavian disability researcher who for years has studied the marginalization of people with disabilities in society, in national and global contexts. During my first visit to Bolivia in 1992, I learned how ‘disability’ is a disputed concept and the subject of power struggles. At that time, I was struck by how differently people with disabilities were defined and categorized in Bolivia compared to the welfare state of Sweden (where I was living and collecting data for my PhD). In addition to collected data, my knowledge of Bolivia is based on personal observations during visits in the region of La Paz, being married to a Bolivian and having social contacts with Bolivians living inside and outside the country. I view Bolivia as a country of contrasts. During my first visit in the 1990s, I observed as a disability researcher the lack of public debate about disability and that disability was seen as a concern for the private, not the public, sphere. To the extent that people with disabilities were visible, it was as beggars in the streets in the city of La Paz. Seeing a person with a wheelchair alone in the streets, a blind person with a white cane or people with autism or cognitive impairments in public places was unusual. When I asked about it, people responded that yes, people with disabilities existed and people pitied them or their families. This left an impression that people with disabilities did not ‘exist’ in public places in 1990s Bolivia. In buses, shops, schools, hospitals and other public places, I could see few people

The fight to be steadfast  247 with visible disabilities. Nevertheless, I do remember in 1994 a blockade that was stopping the traffic in La Paz. It was claimed that this blockade involved people with disabilities. I found this to be in stark contrast to my own situation in Scandinavia – Sweden and Norway. As has been well documented, the work of Bengt Nirje (1969) on normalization in his role as the Ombudsman of the Swedish Association for Retarded Children from the late 1950s radically changed the situation of people with disabilities from objects of medical inquiry to citizens with social value, rights and dignity. These ideas, in and of themselves, almost became ‘normalized’, particularly when they were further promoted through the work of North American disability advocate Wolf Wolfensberger. Unlike the Scandinavian context, the severity of exclusion, marginalization and poverty experienced by disabled people in Bolivia was not discussed as a general issue of public concern. It is in this context that this chapter is positioned. The lack of acknowledgement and normalization for people with disabilities can be illustrated by a statement from the narrative of Carlos: My situation here in the village: in this house where I live, I was previously in bed for a long time, many years in a corner, 17 years without being able to move because of an unknown illness. When I get out of this place, it was the time when I promised to help someone, so another Carlos would be the person to leave the corner [of his home]. This was a commitment that life itself helped me to make. Before I became a disability activist leader in 2001–2002, before this period, all assistance [to people with disabilities] was very assistance [based, not participation based]. Persons with disability [in Bolivia] asked the authorities only for medicines, wheelchairs, and some foods for example milk. They did not ask for work or education, they did not ask … to be included in society.

The Bolivian context Nowadays, Bolivia is named the Plurinational State of Bolivia (Estado Plurinacional de Bolivia). This refers to a state that gradually has become more nationalistic and prouder of its multi-ethnic population. Bolivia is located in the western-central part of South America. The government is based in La Paz, while the public capital is located a long way apart, in Sucre. In 2017, it was estimated the Bolivian population was 12 million people, consisting of Indians, Mestizos or Europeans, which is one reason behind calling Bolivia multinational. The majority of the population has indigenous origins; however, it is not only a person’s origins that matter in Bolivia. Bolivia has a wealthy elite, mostly of European or mixed, mestizo, origin, while indigenous people live in extremely high levels of poverty and social exclusion, which has been the case for decades (Gigler 2009). The background for racial and social segregation in Bolivia today is found in the Spanish colonial period

248  Marianne Hedlund and such segregation has continued into modern times. Spanish is the official and predominant language, although 36 indigenous languages also have official status. Most commonly spoken are the Guarani, Aymara and Quechua languages. In Bolivia, the Aymara population is the largest indigenous population and the region of Alto Plano is where most Aymara live. The Alto Plano is an area in which both the ‘rebel city’ of El Alto and the governmental capital La Paz are located. In 2006, there was a change in national and international policy, when Evo Morales was elected as the president of the country. He represents the Movimiento al Solialismo and the Aymara population. Since he and his socialist party came into power, radical changes have occurred (Burman 2016). Morales himself comes from a small Aymara community up in the Alto region. He has made it his mission to change the situation for the Aymara population through legislative, cultural and political measures. Under his presidency, he wanted to ensure that they should no longer belong to the underprivileged class but should find a place among the privileged. Morales’s public rhetoric recognizes the indigenous people of Bolivia whenever possible and he has used legislative and political measures to make this become a reality. He has made efforts to decolonize previous power structures and privileges for mestizos and white people and to construct the societal structure so it fully recognizes indigenous knowledge and culture (Burman 2016). Consequently, the lifeworld of indigenous symbols, culture and agricultural practice is not only a worldview praised by President Morales, but also a lifeworld regarded as dominating today’s Bolivia. Since Morales came to power, Indian culture and ways of thinking have been applauded based on the ethnocentrism of the Aymara culture and people, according to Omohundro (2008). The aim of his government is to lead Bolivian society out of imperialism and suppression, to become a guardian for indigenous traditions regarding ‘Mother Earth’, and to endorse a policy of decolonization. In 2010, Bolivia passed Law 071 of the Plurinational State (Ley de Derechos de la Madre Tierra), which declares both Mother Earth and life systems (which combine human communities and ecosystems) as titleholders of inherent rights specified in the law (Gaceta Oficial del Estado Plurinacional de Bolivia 2012). Today there are critics of the Morales government, his policies and strategies of economic development, both from the left and the right side of Bolivian politics (Burman 2016). Given this broader political context, it is reasonable to suggest that Bolivia is a changing society. This sense of change is particularly driven by a stronger focus on issues of redress to put an end to the long-standing racial discrimination experienced by Indigenous people. Despite these efforts, qualitative new structures of inequality appear to be emerging. Disability rights is one area emerging from the changing political landscape after being historically silenced. As some commentators have observed, although Bolivia is experiencing radical change, this does not necessarily mean that a government that fights against oppression will fight for the end of oppression for all. One thing we learn from the struggles of disability rights activists in Bolivia is that even progressive governments prioritize some struggles for justice above others.

The fight to be steadfast  249

La Marcha: the fight of Bolivian disability activists The 2016 march, as documented in the film The Fight, involved Bolivian disability activists organizing a caravan of disabled people, which was an unusual tool to visualize their fight and requests. In one of the first scenes in the documentary, we see a man crawling on his knees and elbows wearing only a big diaper as his clothes, in front of a wall of riot police with their shields and equipment. The riot police place their shields on the ground. Filmmakers Ayala and Fallshaw filmed their personal observations and interviews with individuals as they followed the activists on their fight. The purpose of the documentary was to reconstruct a situation that brought forward the disability activists’ fight for dignity and their pain at living as disabled citizens in Bolivia. The filmmakers wanted to contribute to a change of situation for the demonstrating disability activists. They featured close-up scenes of the frequent, violent reactions from the police towards the demonstrating disability activists as well as storytelling and pictures from the activists. For a period of approximately three months, the disability activists participated in the caravan as it made its way to La Paz and in the subsequent local camp in the streets of La Paz. They lived in tents, downtown and close to Plaza Murillo, where the government was based. Their claim was that the Bolivian government, either President Morales himself or his representatives, should meet them and hear their stories and requests. The activists were radical in their approach. A scene from the documentary shows a woman hanging in a wheelchair high above the ground in rope harness from a crane and slowly being lowered down to the other activists. Another scene shows a young Bolivian woman speaking to the person making the documentary. It is clear that the woman has a severe speech impairment and is sitting in a wheelchair. She also waves bowed hands when speaking to emphasize her point. She says they want to talk to President Morales and that is the reason why they are using strong measures to be heard. The 2016 documentary also shows interviews with protesters describing their physical sickness and pain after living in tents and on the streets for months. The lack of reasonable conditions – toilets, beds and so on – or access to technical equipment, and the basic conditions at the tent camp (i.e. no water or toilets) made some demonstrators leave as they needed extra medical attention or became hospitalized. Living in a tent in a camp in La Paz can be challenging for anyone, as the temperature can vary between below zero and more than 24 degrees Celsius during the day. For the activists with disabilities, it was both physically and psychologically demanding, because they did not have access to all assistive equipment or warm conditions. In the documentary, we hear about one of the participants needing to rest more in the tent and get medical volunteers to help with medical treatment for kidney problems. Nevertheless, this man claims he will not give up and he returns to the tent camp and the other disability activists. In 2016, as in 2012, the disability activists relied on volunteers, local organizations and sympathizers to assist and feed them during the protest. The activists remained in the camp, insisting on meeting with a representative of the government to hear their request to get a monthly disability pension of

250  Marianne Hedlund 500 Bs (about £90 in 2017). This is not a high amount when compared to, for example, the old-age pension, la renta dignidad (a pension paid to people who have worked a certain amount of years and are more than 60 years old), which, in 2017, was increased by 50 Bs to 250 Bs per month (Página Siete 2017). People with disabilities in 2016 were not entitled to any public disability pension if they were of working age. Some people with severe disabilities could get a basic benefit, administered by the Ministry of Health. This payment is called La renta solidaria (the solidarity payment) and was implemented in 2013 after the first disability demonstration in 2012. It is an annual payment of 1,000 Bs targeted towards people with severe and very serious disabilities (Ministerio de Salud 2013). This payment is also very low compared to the old-age pension, which in 2013 was between 2,000 Bs and 25,000 Bs annually, depending on the number of years worked (Ministerio de Planificación del Desarrollo 2013). The protest caravan of disability activists in 2016 continued the same message and fight as the 2012 protest, as the original issues had not been addressed. The protesters received attention and backing from national news and local people on their caravan towards La Paz. The protest march in 2012 also received attention from international newspapers. The Guardian wrote: A caravan of about 50 adults and children ended a 1,000-mile, 100-day trek through Bolivia at the protest near government offices in La Paz on Thursday. Scuffles broke out, pepper spray was used after riot police, who stopped them reaching the legislature, and presidential palace to petitioning MPs and the presidential palace for a tripling of the £91 monthly state subsidy for disabled people, blocked the group. The protesters tried to break through the lines using their crutches and wheelchairs but were forced back in a melee in which several people were injured and four detained. The protest organizers then declared a hunger strike by 10 adults and a roundthe-clock vigil by the rest. (Carroll 2012) In 2012 and in 2016, riot police initially stopped the disability activists from meeting representatives from the government. The activists aimed to reach the Plaza Murillo, a common place to gather for other protest movements in Bolivia. Claiming their entitlement to protest there, the disability activists demonstrated that anyone should be allowed access to this place, including people with disabilities. Sr Romero, a government minister, said in a press conference that the government needed to stop the disability activists and their fight. At the press conference, Romero then stated that people from the political opposition had infiltrated the march and therefore the activists needed to be blocked. ‘There are other groups trying to politicize this, trying to create a climate of disorder and confrontation’, he said. ‘Our obligation is to secure Plaza Murillo’ (Carroll 2012). One of the leading disability organizers in 2012, Carlos Mariaca, opposes this description of the protest. According to him, this statement was ‘an excuse’ by the minister for the government not replying to the activists’ demands. There was no

The fight to be steadfast  251 strong evidence that political opponents of Evo Morales had infiltrated the protest (Carroll 2012). Representatives of the Bolivian government used the ‘infiltration message’ as rhetoric to ignore the demonstrators’ demands both in 2012 and 2016. This response is nothing new to the disability activists, according to Mariaca. Since 2007, he claimed, the disability activists had agreed on a strategy to go more public and the disability organizations agreed on a public policy plan to direct at government. With these decisions, the perspective among people with disabilities changed and so did the public’s attention to disability activists. The ultimate aim of the activists was to struggle for disability rights and benefits and to confront and eventually force the government to improve rights for people with disabilities. As Mariaca said in our interview, The mentality of the parents of children with disabilities has changed. The parents go out to the street. The disabled leave in wheelchairs, there is no shame. However, this is without any help from the government. It has been by our own merit, our own struggle. We have also achieved sympathy among the press, they also understand us as a population. The press … already cover and understand us and in some way … supports our struggle. In all these years, we have achieved many laws but Evo voluntarily gave none of those laws. That is to say that we achieved it with our struggle, with strikes and marches. People with disabilities no longer only wanted to be associated with incapacities, but with capacities, according to Mariaca. He stated that they wanted to show strength and energy by demonstrating. They left their wheelchairs and used their assistive technologies as weapons in fights with riot police. They wanted to be seen as humans with capacity and the ability to fight – there was no shame anymore. The activists and their supporters indicated that the national press of Bolivia and what the activists call ‘ordinary’ people acknowledged their fight and supported them both in 2012 and in 2016. Therefore, the disability activists struggled more with the government than with the attitudes of civil society. In the interview, Mariaca also raised the question: ‘Do not the legacy of laws matter, such as the UN Convention on the Rights of Persons with Disabilities?’ (United Nations 2006).1 His answer was that the implementation of the law matters. The CRPD entitling rights to people with disabilities in Bolivia was not ratified voluntarily by the government nor the president, according to Mariaca. Rather, he argued, the CRPD became ratified because of the disability activists’ fight and protest marches in 2012 and 2016. Even if different activists organized the protests in 2012 and 2016, they shared the same vision – to change Bolivia and the situation for people with disabilities. The activists no longer put their rights and dignity up for discussion, they did not accept being neglected in society. They believed that such a picture of people with disabilities should be left for the past when they sought only very basic rights. The purpose of the protests by the disability activists was to change the Bolivian community and the material situation for people with disabilities. According to

252  Marianne Hedlund the activists, they ultimately also aimed to change the attitudes of all Bolivians, including the government, to an acceptance of people with disabilities as part of society. The ongoing fight is also about changing disabled people’s own perception of themselves – to make themselves visible and powerful in the Bolivian community. As Mariaca said, ‘If we want to change society, we must change ourselves first’. For the activists, it is about turning Bolivia into a nation that does not accept only formal laws on paper, but also implements social rights that enable people with disabilities to live a decent life. This is a fight they intend to win and their claims are not for sale or compromise.

Embracing dignity and social citizenship The disability movement in Bolivia may be seen as a struggle for justice and advocacy. It is activism protesting against marginalization and for social rights of disabled citizens. The fight is about what Wolfensberger (2011) described as society’s obligation to value people with disabilities and normalize them in society. Wolfensberger (2011) maintains that a society with a history of segregation and suppression of people with disabilities must add cultural value to these people, and this is particularly important when it comes to people with learning disabilities. If we apply such a perspective to the Bolivian movement, their fight is a response to a society traditionally segregating them and the advancement of an argument that society needs to recognize their social value and accept their requests. People with disabilities must be culturally accepted as having both capacities and incapacities. They should not be seen solely as people with less value than other citizens. The activists’ demands are that they no longer want to hide away or belong to a socially disadvantaged group; they want to belong to the Bolivian people. Wolfensberger’s theory states nothing about a right to social citizenship. Social citizenship means access to more than political and civil rights, according to Marshall (1950). The Bolivian disability activists are fighting not only to change attitudes and values, what Anspach (1979) describes as a fight away from stigma towards a common identity politics for people with disabilities, but also to get a decent income and disability pension. The fight is therefore about getting full acknowledgement of the importance of disability rights and access to social citizenship for people with disabilities in society. The activists refuse to be silent and easily pleased, satisfied with their situation and hiding away in their pain. Instead, they fight to extend their social role in society, to be in a position of dignity and respect. The activists’ struggle is about becoming a part of the current context of a reforming Bolivia. Marshall (1950) maintains that most struggles to get rights to social citizenship are fights. Though Marshall based his theorizing on welfare state development in Europe, it may also have value when applied to this development in other societies and continents. Marshall argues that a state caring for the wellbeing and welfare of its citizens should not only provide its citizens with a modicum of economic welfare and security, but also ensure the right for its citizens to share fully any social advantages according to the standards prevailing in such a society. To become

The fight to be steadfast  253 full members of a society, social citizenship should be granted (Marshall 1950). Social citizenship means to possess a status of equality with respect to the rights and duties the citizen has in the society. A key point for Marshall was that social citizenship is an outcome of an evolution in the social development of a society. In English development, he argues, this occurred through an evolution of rights developed from civil rights in the eighteenth century, to political rights in the nineteenth and to social rights in the twentieth. Even if criticism is raised about Marshall’s evolutionary perspective of a society that is based on a white, working-man European perspective, it may be that Marshall did not try to develop a universal theory but a theoretical framework for analyzing citizenship. If so, his arguments are that social rights have a unique position in state development, and usually come later than an entitlement to political and civil rights, and that social rights may not follow a stable or standardized route (Hedlund 2004). This raises the possibility of social rights evolving in a particular historical context of society because of struggles between particular groups with various degree of influence, in different periods of time (Marshall 1950). Hence, Marshall’s theorizing proposes that social rights and citizenship are important for changing society and solving class or other citizenship conflicts. In this way, it also can be used to understand the conflict involved in the disabled citizens’ fight. Marshall (1950, p. 32) concludes in his essay about social citizenship that the following three major factors must be present in order for social citizenship to solve class or citizenship conflicts: •• •• ••

It must lessen the income gaps that create social inequality. It must be an extension of the area of common culture and common experience in society. It must be an enlargement of citizenship and mean that more rights are granted to citizens.

Fraser and Gordon (1994) claim these factors are too simplistic and they offer an alternative explanation for the development of social citizenship based on development and feminist analysis in the United States. They alert their readers not to forget to analyze the gender dimensions in society and that men, at least in the United States, have held more powerful positions than women in civil society. Earlier work by Fraser and Gordon (1992) suggests that social citizenship is a word rarely used in the (North) American context, as it indicates that citizenship in a welfare state includes the right to social provision – a guarantee of a decent standard of living. In (North) America, the development of civil rights is more important than the development of social rights. Civil rights are historically based on a hegemony of contract between (male) partners. The male hegemony of contract and modern conception of ‘charity’ have been important for the development of citizenship in the United States. Charity and civil rights were generated as a ‘complementary other’ to each other. Thus, welfare and helping the unfortunate became a form of charity, rather than a societal obligation. Due to this viewpoint,

254  Marianne Hedlund the receivers of charity were stigmatized for not ‘earning’ the charity (Fraser and Gordon 1992). Neither the theorizing of Marshall (1950) nor Fraser and Gordon (1992) directly addresses the development of social citizenship for people with disabilities as it has developed in Bolivian society. Although citizenship has been described as a useful concept to theorize disability in relation to society (Mackenzie et al. 2011), research about disability and citizenship often neglects to define citizenship. Scientific research often omits to clarify what type of citizenship is being discussed or what conclusions can be drawn from it (Sépulchre 2017). Sepulchre’s (2017) scoping review revealed that multiple dimensions of citizenship are used in research. In order to clarify the situation of membership and participation of people with disabilities in society, research should develop the conceptual use of citizenship in relation to disability and explore different research designs, investigate various citizenship sectors and take into account the complexity of personal and social situations for people with disabilities (Sépulchre 2017). Studies of citizenship in relation to disability often focus on the individual rather than taking into account their embeddedness in social networks and society (Sépulchre 2017). The struggle of the Bolivian disability activists has parallels to struggles in different parts of the world. The right to participation in society based on dignity and respect and the right to social citizenship is a current and historical struggle, also fought, for example, in Scandinavian countries and in India with the fight for a disability pension. The notion of social citizenship as defined by Marshall (1950) is relevant to issues of membership and participation in society, not only basic income security. People with disabilities have the right to full and effective participation in society according to the CRPD. Bolivia ratified the CRPD in 2009. In August 2016, Bolivia’s record on the implementation of the rights of people with disabilities was reviewed by the UN Committee (OHCHR 2016). The report from the government (CRPD 2015) stated that since the entry into force of the Convention, the country had not yet made a national authority responsible for its implementation and monitoring. But it intended to establish CONALPEDIS, a decentralized body responsible for defending the human rights of people with disabilities. The report states that the remit of CONALPEDIS will be to: •• •• •• ••

take measures to promote equality of opportunity for people with disabilities; ensure that the rights of people with disabilities are fully exercised and are enforceable in the courts; promote and coordinate with other state institutions measures to develop physical infrastructure in public facilities and the technical, material and human resources to address the needs of people with disabilities; promote and encourage an approach to disability with a social and human rights focus through awareness campaigns geared to social inclusion in the framework of a culture of dignity and respect for people with disability. (CRPD 2015)

The fight to be steadfast  255 If Bolivia is to implement this policy and goals it may very well achieve social citizenship and dignity for people with disabilities. Nevertheless, the government story of its implementation of the CRPD is somewhat more formal and in contrast to the viewpoint brought forward by the disability activists, which claims that the government does not treat people with disabilities with dignity and equality. The Bolivan government may or may not implement what it claims it will in the CRPD report it delivered to the United Nations in 2015. It is possible the implementation will not be done in consultation with people with disabilities. In one of the scenes from the documentary, a woman tells the story of a difficult life where she was left alone with the responsibility to support two young children because her husband had left her. Apparently he was ashamed by his wife’s disability. She joined the demonstrators in 2016 to get an improved life for herself and her children. This woman’s story may be an individual one and it may be a story common to many people with disabilities living in Bolivia today. Only further empirical research will clarify if this is so.

Results of disability activism In the 2012 and 2016 demonstrations, where the disability activists were met by riot police and at first harshly denied the opportunity to speak with President Morales, the protesters got little back from the government. After the demonstration in 2012, an annual payment of solidarity income (or what the government calls ‘a subsidy’) was introduced. Still, this payment (Renta solidaria) is far below the annual minimum salary of workers in Bolivia. In 2016, the disability activists again were brutally refused by the Bolivian authorities and state news outlets tried to silence them, just as in 2012. The leader of the protest in 2016, Rose Mery Guarita, a lawyer in a wheelchair and a veteran disability activist, together with newer protesters, repeated the strategy of camping in tents and blocking the streets at Plaza Murillo (Guardian 2016). Again, the disability activists met riot police and high barricades and many police worked to stop them. The documentary shows violent confrontations between police and the disabled demonstrators, and the use of pepper spray and water cannon from police. The activists’ request for an adequate disability pension was denied once more. Even if they suspended themselves from the city’s bridges in their wheelchairs and in other heartbreaking ways showed their protest, the government and police showed no mercy nor compliance. However, the disability activists in Bolivia got attention and sympathy nationally and internationally. The negative reaction of the government and the scenes of repression damaged the government’s reputation nationally and internationally. The way the demonstrators with disability were met by the authorities strongly contrasted with Morales’s image of being a socialist defender of the poor and Indigenous people in Bolivia. His message to build a new and socialist society lost some of its legitimacy and trust among Bolivians who chose him as president (Burman 2016).

256  Marianne Hedlund The leader of the demonstrators and the protest in 2016 denied that the activists were campaigning against or developing a plot against Morales and the government, just as the leader of the activists in 2012 had done. The president and his government thereby lost further legitimacy for these claims. Rose Mery Guarita said: We are called opposition, but we’re not. We are a-partisan. We just want our rights to be respected … Like any Bolivian citizen, we want to be treated with equality and for the government to treat us as citizens, to give us the opportunity to work. We do not want any more silent deaths. We want society to include us, and to take care of us. We just hope that the government isn’t lying to us again. (Watts 2017) The government and socialist leader of Bolivia eventually paid some attention to their fight. President Morales had to reconsider the government policies and the way they had failed and damaged people with disabilities. Months after the riot police stopped the demonstration in the streets of La Paz, Morales submitted a bill to Congress in February 2017 to provide a monthly allowance of 250 Bs to people with severe disabilities or very severe diseases. The payment should be paid by local municipal authorities, not by the national government. This proposal won the support of the Federation of Municipal Associations, which represents the mayors in the municipalities. However, the proposal and allowance do not cover all disabled people and it is far less, only about half the amount, than what the activists demanded. Yet, it is a sign of some government and public recognition of the difficult situation for people with disabilities in Bolivia and the need for public disability pension.

Conclusion The 2016 demonstration repeated many of the same issues brought forward by activists in 2012. Behind both these protests were activists with disabilities and representatives of people with disabilities who were tired of what they saw as neglect of disability rights and lack of attention from the government. They were fighting to get a reasonable income, a guaranteed basic standard of living and the possibility of living independently of charity or their family and in equality with other Bolivians. In addition, the activists fought for not only social citizenship, welfare and social benefits, but also for their dignity and right to respect and inclusion in society. This respect and dignity are not negotiable for the disability activists in Bolivia. They require ‘a voice’ and to be ‘heard’ in society. It is a fight about the right to be listened to, to be included and enabled in society, not disabled and ignored. As one person in the documentary says: ‘People with disabilities are treated worse than dogs!’ (Guardian 2016). This reference to a dog could be interpreted as a symbolic statement. Among the rich and affluent population of

The fight to be steadfast  257 Bolivia, dogs are kept more for company and status reasons, yet depend on the charity of their owners. Most dogs in the streets are not treated well; they hunt for food and shelter in the streets and they may be kicked or hit by cars or buses, leaving them crippled. Stray dogs are a sign of being low down in the Bolivian hierarchy and priorities. People with disabilities expressing they have less value than dogs demonstrates they are also low down in the hierarchy and priorities of Bolivian society. The fight of the activists was about not wanting to be in an underprivileged position and demanding dignity and respect in Bolivian society. Even when riot police stopped the disabled protesters, they did not give up their demands and demonstration. They started new marches and demonstrations; they kept up their voices and fought for better conditions. The fight of the Bolivian disability activists was met with brutal violence, and people with disabilities are still far from attaining equal status and social citizenship in Bolivia, yet it is possible to trace seeds of change in Bolivian society due to their marches.

Note 1 Bolivia signed the UN Convention by 30 March 2007 (CRPD/C/BOL/CO) and ratified it by 6 November 2009.

References Anspach, R.R., 1979. From stigma to identity politics: political activism among the physically disabled and former mental patients. Social Science & Medicine, 13, 765–773. Burman, A., 2016. Damnès realities and ontological disobedience: notes on the coloniality of reality in higher education in the Bolivian Andes and beyond. In: R. Grostfoguel, R. Hernandez and E.R. Velásquez, eds. Decolonizing the westernized university: interventions in philosophy of education from within and without. London: Lexington Books (Chapter 6). Carroll, R., 2012. Disabled protesters clash with police in Bolivia. The Guardian, 25 February. Available from: https://www.theguardian.com/world/2012/feb/24/disabledprotesters-clash-police-bolivia [Accessed 27 December 2018]. Committee on the Rights of Persons with Disabilities (CRPD), 2015. Consideration of reports submitted by states parties under article 35 of the convention, initial reports of states parties due in 2011: Plurinational State of Bolivia. CRPD/C/ BOL/1. United Nations. Available from: http://www.refworld.org/cgi-bin/texis/vtx/ rwmain?docid=57038ed74 [Accessed 27 December 2018]. Fraser, N. and Gordon, L., 1992. Contract versus charity: why is there no social citizenship in the United States? Socialist Review, 22, 45–65. Fraser, N. and Gordon, L., 1994. A genealogy of dependency: tracing a keyword of the U.S. welfare state. Signs: Journal of Women in Culture and Society, 19 (2), 309–336. Gaceta Oficial del Estado Plurinacional de Bolivia, 2012. Ley No 300, Ley de 15 Octubre de 2012. Ley marco de la madre tierra y Desarrollo integral para vivir bien. Available from: http://www.fonabosque.gob.bo/wp-content/uploads/2017/04/Ley-No-300.pdf [Accessed 27 December 2018].

258  Marianne Hedlund Gigler, B.-S., 2009. Poverty, inequality and human development of indigenous peoples in Bolivia. Georgetown University. Available from: http://pdba.georgetown.edu/ CLAS%20RESEARCH/Working%20Papers/WP17.pdf [Accessed 27 December 2018]. Guardian, 2016. The Fight: disability rights protestors in Bolivia on the barricades. Available from: https://www.theguardian.com/news/2017/may/05/the-fight-disabilityrights-protestors-in-bolivia-on-the-barricades [Accessed 27 December 2018]. Hedlund, M., 2000. Disability as a phenomenon: a discourse of social and biological understanding. Disability & Society, 15 (5), 765–780. Hedlund, M., 2004. Shaping justice: defining the disability benefit category in Swedish social policy. Thesis (PhD). Lund University. Hedlund, M., 2009. Understandings of the disability concept: a complex and diverse concept. In: C.A. Marshall, E. Kendall, M.E. Banks and R.M.S. Gover, eds. Disabilities: insights from across fields and around the world. Westport, CT: Praeger Publishers, pp. 5–18. Mackenzie, C., Bennett, A. and Cairney, M., 2011. Active citizenship and acquired neurological communication difficulty. Disability and Rehabilitation, 33 (3), 187–194. Marshall, T.H., 1950. Citizenship and social class: and other essays. Cambridge and New York: Cambridge University Press. Ministerio de Planificación del Desarrollo, 2013. El impacto de la renta dignidad. Bolivia. Available from: http://www.udape.gob.bo/evaluaciondeimpacto/11_Resumen%20 Ejecutivo_Impacto%20Renta%20Dignidad_Julio%202013_v%203.pdf [Accessed 27 December 2018]. Ministerio de Salud, 2013. Renta solidaria [online]. Food and Security Platform. Available from: https://plataformacelac.org/en/programa/190 [Accessed 27 December 2018]. Nirje, B., 1969. The normalization principle and its human management implications. In: R.B. Kugel and W. Wolfensberger, eds. Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation, pp. 179–195. Office of the High Commissioner of Human Rights (OHCHR), 2016. Bolivia’s record on rights of persons with disabilities faces review by UN Committee. Available from: https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx? NewsID=20372&LangID=E [Accessed 27 December 2018]. Omohundro, J.T., 2008. Thinking like an anthropologist: a practical introduction to cultural anthropology. Boston, MA: McGraw Hill. Página Siete, 2017. El gobierno sube en Bs 50 la renta dignidad [online]. Available from: http://www.paginasiete.bo/sociedad/2017/4/28/gobierno-sube-renta-dignidad-135886. html [Accessed 27 December 2018]. Scott, J., 1990. A matter of record: documentary sources in social research. Cambridge: Polity Press. Sépulchre, M., 2017. Research about citizenship and disability: a scoping review. Disability and Rehabilitation, 39 (10), 949–956. United Nations, 2006. Convention on the Rights of Persons with Disabilities. United Nations Treaty Collection. Available from: https://treaties.un.org/Pages/ViewDetails. aspx?src=TREATY&mtdsg_no=IV-15&chapter=4&lang=_en&clang=_en [Accessed 27 December 2018].

The fight to be steadfast  259 Watts, J. (2017). Bolivia’s caravan of courage leaves a bittersweet legacy for disabled protesters. The Guardian. Available from: https://www.theguardian.com/globaldevelopment/2017/may/05/bolivia-caravan-of-courage-bittersweet-legacy-disabledprotesters-the-fight-documentary Wolfensberger, W., 2011. Social role valorization: a proposed new term for the principle of normalization. Intellectual and Developmental Disabilities, 49 (6), 435–440.

Part V

Working transnationally

18 Advocating for independent living in the European Union Where there’s money, there’s a way? Ines Bulic Cojocariu

Introduction The right to live independently and to be included in community is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (UN 2006). According to the Committee on the Rights of Persons with Disabilities (CRPD Committee), it is ‘one of the widest ranging and most intersectional articles’ and ‘integral for the implementation of the Convention across all articles’ (UN 2017). Without independent living, disabled people1 are unable to exercise many other rights, such as to go to school, to work or to form a family. The European Union (EU) brings together some of the richest nations in the world and, to some extent, has been a leader over the last four decades in promoting the rights of disabled people to live independently. The EU ratified the CRPD in 2010 and, to date, all 28 of its Member States have ratified the Convention as well. At the same time, across the EU, over a million disabled people continue to languish in long-stay residential institutions and are denied an opportunity to live independently and to be included in the community (EU Agency for Fundamental Rights 2017). Among the biggest barriers is the lack of support to facilitate independent living, ranging from the shortage of adequate housing and the lack of personal assistance and other specialized and mainstream services to the fact that thousands of disabled people are denied legal capacity. The European Structural and Investment Funds (ESI Funds) have the potential to facilitate access of disabled people to independent living. They are allocated to Member States with the aim of tackling unemployment and poverty, and promoting social inclusion of disadvantaged groups. Since 2014 they have been designated for promoting the transition from institutional care to living in the community in a number of countries (Regulation (EU) No 1303/2013). This chapter discusses the efforts of the European Network on Independent Living (ENIL) to promote the right to independent living in the EU. It focuses on one particular area of the organization’s work: the monitoring and advocacy with regard to the use of ESI Funds for independent living and deinstitutionalization. ENIL was established in 1989 by disabled activists who refused to be placed in institutions and demanded choice, control and full participation, with personal assistance. Since then, ENIL has grown into a network of grassroots independent

264  Ines Bulic Cojocariu living organizations from across Europe, united in the belief that all disabled people should live independently in the community and that ‘institution is not a solution’. ENIL is the only cross-disability, user-led, pan European organization advocating for personal assistance, peer support, direct payments, freedom of movement for disabled people within the EU, the use of ESI Funds for independent living and the closure of institutions. The organization’s work is funded by ULOBA (a Norwegian independent living cooperative), STIL and GIL (Swedish CILs) and the Open Society Foundations’ Public Health Program. In the last 12 years, ENIL’s advocacy on ESI Funds has helped to change legislation and policy on how these funds can be used. At the same time, for disabled people living in institutions across the EU, changes have been slow and disappointing. Rather than developing genuine community-based alternatives, most Member States have opted for short cuts. They have been placing disabled people into more contemporary facilities, not much different than the old institutions. ENIL’s advocacy has therefore reached a new stage – a much more challenging one – focused on preventing the building of smaller institutions while bringing about real independent living and community inclusion in the EU.

The importance of definitions When discussing efforts to achieve independent living, it is important to understand what we mean by this term. The misinterpretation of the independent living terminology has implications for advocacy, creating confusion about what it is that we would like to achieve and how close we are to getting there. Misuse of the independent living terminology For a number of years, ENIL (2017a) has been raising concerns about the misuse of the independent living terminology by governments, service providers, EU institutions, families and disabled people themselves. ‘Independent living’ is used in the names of residential institutions or to imply that people must be self-sufficient. According to some, independent living is not for all disabled people but only for those with physical impairments, for people with lower support needs, for those below 65, or those fortunate enough to already live in the community. ‘Personal assistance’ also has a wide variety of interpretations but is most commonly confused with care, including that provided in institutions. ENIL (2012) defines independent living as: the daily demonstration of human rights-based disability policies. Independent living is possible through the combination of various environmental and individual factors that allow disabled people to have control over their own lives. This includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live. Services must be available, accessible to all and provided on the basis of equal opportunity, free and

Independent living in the European Union  265 informed consent and allowing disabled people flexibility in our daily life. Independent living requires that the built environment, transport and information are accessible, that there is availability of technical aids, access to personal assistance and/or community-based services. It is necessary to point out that independent living is for all disabled persons, regardless of the gender, age and the level of their support needs. The elements of choice and control, which feature in ENIL’s definition, are also key to how Article 19 of the CRPD (living independently and being included in the community) defines independent living. Article 19 refers to disabled people being able to ‘choose their place of residence and where and with whom to live on an equal basis with others’. To ensure access to independent living, States Parties must provide disabled people with a ‘range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community’ (UN 2006). Mainstream services and facilities also have to be made accessible to disabled people so that they can live just like everyone else. General Comment on Article 19 Article 19 does not talk about institutions or the need to close down institutions, nor does it include a definition of community-based services. However, since the adoption in 2017 of the General Comment on Article 19 by the CRPD Committee, there is clear guidance on the measures needed to implement the right to independent living. Among other definitions, the General Comment sets out the defining elements of ‘an institution’. Some of these elements are: the obligatory sharing of assistants with others and no or limited influence over by whom one has to accept assistance, isolation and segregation from independent life within the community, lack of control over day-to-day decisions, lack of choice over whom to live with, rigidity of routine […] identical activities in the same place for a group of persons … (UN 2017, para. 16c) This is relevant to ENIL’s advocacy work on ESI Funds, which involves, to a large extent, assessing whether the new services and facilities facilitate or hinder independent living. With regard to ‘deinstitutionalization’, the General Comment (UN 2017, para. 85) makes it clear that the process requires ‘a systemic transformation, which includes the closure of institutions and eliminating institutionalising regulations’. Furthermore, there should be no further investments, of any kind, into ‘maintaining, renovating, establishing, building existing and new institutions’ (UN 2017, para. 51).

266  Ines Bulic Cojocariu

Legal basis for advocating for independent living in the EU UN Convention on the Rights of Persons with Disabilities In 2014, ENIL published a shadow report on the implementation of Article 19 of the CRPD in the EU, which focused on assessing the obligations of the EU in relation to independent living. While acknowledging that the CRPD is a ‘mixed agreement’ – therefore the EU is not responsible for implementing all the articles – ENIL raised concerns about the lack of clarity on the scope of the EU’s competence, and on action to be taken by the EU to ensure overall compliance with Article 19 and the CRPD as a whole (ENIL-ECCL 2014, pp. 39, 7). Two areas that relate to independent living which ENIL identified as being under the competence of the EU were the use of ESI Funds and personal assistance. Although the EU’s initial report on the implementation of the CRPD (EC 2014c) argued that personal assistance was a matter of national competence, ENIL relied on the fact that the EU Disability Strategy 2010–2020 (EC 2010) placed emphasis on the importance of personal assistance, the fact that personal assistance is a ‘key tool’ for independent living and that it is indispensable for disabled people’s ability to exercise their right to freedom of movement within the EU (for more information, see Open Society Foundations 2013). The EU’s competence with regard to the use of ESI Funds is much more clear cut, given that these funds are subject to ‘shared management’ between the European Commission (EC) and the Member States. In the shadow report, ENIL established a strong link between the use of ESI Funds and implementation of Article 19 of the CRPD. It noted that these funds ‘have a particularly important role in helping to address the institutionalisation of people with disabilities’ by supporting the development of new services (including personal assistance) and helping to reform legislative and financial frameworks to facilitate independent living (ENIL-ECCL 2014, p. 25). This view was recently confirmed in a memo published by several eminent legal experts, which concluded that ‘spending monies using the ESIF to invest directly or indirectly in long term care institutions for persons with disabilities is not permitted under the UN CRPD and EU law’ (Quinn et al. 2018, p. 25). The memo also explained that the ‘EU law, including the ESIF, should be interpreted in the light of the clear obligations contained in the CRPD’ (Quinn et al. 2018, p. 24). EU law and policy Importantly, the legal basis for advocating for independent living in the EU is not limited to the CRPD. For example, the EU Charter of Fundamental Rights (2012, Article 26) recognizes ‘the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community’. More recently, the European Pillar of Social Rights, a part of the EU’s effort to ‘deliver new and more effective rights for citizens’, proclaimed the ‘right to affordable long-term care services of good

Independent living in the European Union  267 quality, in particular home-care and community-based services’ (EC 2017 principle 18). Unfortunately, ‘inclusion of persons with disabilities’ is to be delivered only through income support and labour-market inclusion, thus leaving behind those in institutional care or with complicated support needs. In 2017, the Estonian presidency of the European Council promoted the adoption of the Council Conclusions on independent living, which state that, while Member States are by and large responsible for social policies, ‘a more wideranging discussion at the EU level […] can make a solid contribution to the development of common approaches’ (Council of the European Union 2017, para. 6). Although critical of a number of aspects of the conclusions, ENIL (2017d) welcomed the fact that they called on the EC to ‘follow closely the monitoring of the use of ESIF and other relevant EU funding mechanisms to encourage the transition from institutional to community-based care’. The European Committee of the Regions (2017) adopted its own opinion, stating that ‘developing a more community-based system of care should be a high priority for all EU MS and that deinstitutionalisation should uphold the rights and guarantee the best possible outcomes for those affected’. Although not legally binding, these policy documents were adopted by representatives of the 28 Member States and should therefore serve as a statement of common values and inform laws, policies and practices at the national level. Both documents refer to the Common European Guidelines on the Transition from Institutional to Community-based Care (EEG 2012a), drafted by the European Expert Group (EEG) of the same name and endorsed by the European Commission. The Common European Guidelines provide step-by-step guidance on moving from a system of institutional care to living in the community, and were heavily informed by the experiences of disabled people through ENIL’s participation in the drafting process. The accompanying document to the Guidelines – the Toolkit on the use of EU Funds (EEG 2012b, 2014) – seeks to explain how to use ESI Funds to support deinstitutionalization at different stages.

The rules governing the use of ESI Funds The rules governing the use of ESI Funds are set out in a legislative package adopted prior to each funding period by the EC, the European Parliament and the European Council. There are fund-specific regulations as well as a common provisions regulation for all the funds. ESI Funds operate in seven-year cycles (also referred to as the ‘funding period’), with each cycle composed of programming, implementation, monitoring and evaluation. ENIL’s work focuses on two of the five Structural Funds: the European Social Fund (ESF) and the European Regional Development Fund (ERDF) – with €121 billion and €281 billion available respectively – because of their potential to support the process of deinstitutionalization and access to independent living. While the ERDF supports ‘balanced development in the different regions of the EU’, ESF supports employment-related projects and human capital (EC n.d.).

268  Ines Bulic Cojocariu In the 2007–2013 funding period, the regulations lacked a reference to the need to fund alternatives to institutional care, nor was there an explicit prohibition of investing in projects that segregate individuals from the rest of society. The regulations did include a prohibition of discrimination, however. Article 16 of the General Regulation required Member States to ‘take appropriate steps to prevent any discrimination on the basis of […] disability […] during the various stages of implementing the Funds and, in particular access to them’ (2006 cited in EEG 2012b, p. 16). Moreover, both the ESF and the ERDF regulations contained other useful provisions. They spoke of the need to support social inclusion of disadvantaged groups through employment, and infrastructure that contributes to ‘increasing the quality of life’ (2006 cited in EEG 2012b, p. 17). The 2014–2020 regulations (Regulation (EU) No 1303/2013) introduced a number of novel ideas, the aim of which was to encourage Member States to implement deinstitutionalization reforms and to prevent investments in long-stay residential institutions. The most important of these was the introduction of the thematic objective ‘Promoting social inclusion, combating poverty and any discrimination’ in the common provisions regulation. Under this objective, an investment priority on the ‘transition from institutional to community-based services’ was introduced in the ERDF Regulation (cited in EEG 2014, p. 25), which also included the definition of community-based services as ‘all forms of in-home, family-based, residential and other community services which support the right of all persons to live in the community, with an equality of choices, and which seek to prevent isolation or segregation from the community’ (cited in EEG 2014, p. 25). Under the ESF Regulation (2013 cited in EEG 2014), at least 20 per cent of funding should be used to promote social inclusion and for fighting poverty and discrimination. More specifically, like the ERDF, the ESF should be used to ‘promote the transition from institutional to community-based care’ and ‘should not support any action that contributes to segregation or social exclusion’ (cited in EEG 2014, p. 26). The principle of non-discrimination has been retained in the 2014–2020 funding period and should be implemented by improving accessibility for people with disabilities and facilitating the transition to community living. Crucially, a new measure was introduced with the objective of the EU ‘getting better value for money’ – the so-called ex ante conditionalities. Essentially, this means that the Member States must comply with certain conditions before being able to use ESI Funds. Most relevant to ENIL is the conditionality related to the thematic objective. Based on this, Member States are required to adopt a national strategy that, ‘depending on the identified needs, includes measures for the shift from institutional to community based care’ (2013 cited in EEG 2014, p. 24). In addition, general conditionalities requiring ‘the existence of administrative capacity for the implementation and application of the United Nations Convention on the Rights of Persons with Disabilities’ and compliance with the EU anti-discrimination law and policy were also written into the regulations (cited in EEG 2014, p. 24). Finally, a European Code of Conduct on Partnership was put in place, providing a framework for the involvement of partners in all the stages of ESI Funds use. The partnership principle requires, among other things, that those ‘which are

Independent living in the European Union  269 at the highest risk of discrimination or social exclusion, in particular persons with disabilities’ have a say in how the funding is used (EC 2014b, recital 4). Having set out the key elements of the rules governing the previous and the current funding periods, it is clear that there has been a positive shift towards facilitating social inclusion and preventing segregation. Whereas the 2007–2013 regulations were negotiated prior to the ratification of the CRPD by the EU, the current regulations were influenced by the new legal and policy environment, with an objective to ensure that the funds available are used to support the implementation of laws and policies the EU has developed or signed up to. Understanding how ESI Funds operate is one of the first barriers to advocating for their use to promote independent living. It is a very complex system which, coupled with the lack of information in accessible formats, the general lack of transparency and the little capacity among disabled persons’ organizations (DPOs) to act as watchdogs, means it is very difficult for independent living organizations to understand and monitor ESI Funds. Despite the fact that ESI Funds are public funds, and despite the principle of shared management, the EC does not have detailed information about the projects that receive funding. It relies, therefore, on civil society organizations to flag concerns about irregularities in the use of ESI Funds.

The (wasted) potential of ESI Funds to facilitate access to independent living ENIL was first made aware that EU funds were being used to renovate institutions for disabled people in 2006, through the European Coalition for Community Living, which ENIL helped to establish and subsequently took over (subsequently referred to as ENIL-ECCL). At the time, there was no awareness that these funds may be supporting large residential institutions for disabled people in the EU and no European organizations advocating on this issue. There was, however, information about the large numbers of disabled people segregated in institutions across the EU, the inhumane conditions in these places and the human rights abuses that occurred. These findings came out of the first EU-wide reports looking at the situation in long-stay residential institutions for disabled people: the Included in Society report (Freyhoff et al. 2004) and the Deinstitutionalisation and Community Living – Outcomes and Costs report (Mansell et al. 2007). The latter found that there were more than 1.2 million people still locked up in different types of institutions in the EU, with no access to community-based support. It was against this background that ENIL-ECCL decided that, to promote independent living, it is crucial to prevent money from going into existing and new institutions for disabled people. Although much of the investment into institutional care came from the national budgets, the decision was made to focus on EU funding. The reasons for this were twofold: first, because this is EU taxpayer money, the allocation of which is regulated more strictly than national funds, and second, because the amount of money allocated is substantial enough to provide

270  Ines Bulic Cojocariu a significant opportunity to change things for the better. Despite the fact that, at this point, the CRPD had not yet come into force, there was enough to suggest that using EU funds to perpetuate the segregation and exclusion of disabled people was against the common values of the European Union. The first report to highlight the potential of EU Funds to support alternatives to institutional care, and setting out evidence of misuse of these funds, was ECCL’s Wasted Money, Wasted Time, Wasted Lives. Published in 2010, the report focused on the situation in Hungary and Romania, countries known for horrific conditions in institutions and with a high prevalence of institutional care. Subsequent reports, also published by ENIL-ECCL, added to the list other Member States from Central and Eastern Europe and the Baltics: Bulgaria, Slovakia, Lithuania, Latvia, Estonia, Croatia, Slovenia and the Czech Republic. During the 2007–2013 funding period, millions of EU funds were invested into the building or renovation of institutions. In Slovakia alone, more than €185 million was allocated for this purpose, creating over 5,000 additional places in institutional care as a result (European Parliament 2016). In Romania, €41.3 million (out of which €27.6 million were EU funds) were invested into institutions (see, for example, the film Here I am, 2017). In Bulgaria, over 100 family-type homes for children with disabilities were built (each accommodating up to 13 children), thus denying them a chance to grow up in a family, to play alongside their peers and, in many cases, to go to school (ENIL 2018). In Hungary, Lithuania and Latvia, many institutions were renovated, including with funding aimed at increasing energy efficiency (ENIL-ECCL 2013, 2015a). The main reason for investing in institutions was the lack of vision for the transition to community living in the Member States; a focus on poor physical conditions, resulting in the renovation of institutions; the lack of coordination of different EU funds; and other systemic barriers to community living (ENILECCL 2013). For example, where laws, regulations and funding favour institutional provision, it is difficult to ensure that the services, even when physically located in the community, do not replicate institutional culture. These concerns were echoed by the CRPD Committee and the Council of Europe Human Rights Commissioner. Following his visit to Slovakia in 2015, the Commissioner noted that, despite Slovakia’s 2011 deinstitutionalization strategy, ‘the planned activities had not […] led to one single person being able to move from an institution into the community’ (European Parliament 2016, p. 26). Beginning with the 2014–2020 period, all the Member States previously covered in the ENIL-ECCL reports had ‘transition from institutional to community-based care’ as an investment priority.2 However, during the 2014–2020 programming stage, it was clear that some of the strategies (required to comply with the ex ante conditionalities) would not be able to deliver participation, social inclusion and prevent segregation. ENIL is concerned that many of the investments planned (or being implemented) will continue to perpetuate the segregation and isolation of disabled people. Most countries have planned to build group homes and day-care centres as a default, one-size-fits-all alternative to large institutions. Moreover, Member

Independent living in the European Union  271 States have failed to put in place adequate mechanisms for monitoring ESI Funds, and to evaluate the potential impact of the planned ESI Funds projects on the final beneficiaries (for example, assessing to what extent disabled people are living independently at the end of the process). There are also significant barriers to achieving meaningful participation of civil society organizations and a lack of information. Finally, ENIL (2018) discovered that, while planning to use ESI Funds for deinstitutionalization, some countries are using national funds to renovate or build new institutions.

Advocating for the use of ESI Funds for independent living Challenging the renovation of institutions When ENIL-ECCL first raised concerns about the renovation of institutions for disabled people in 2006, it received the following response from the European Commission: On the specific question of whether European Union funds should be used, in Romania, for improving existing residential centres, this is primarily a question for the Member State concerned. However, the information that the Commission services have, suggests that in the short term the state of these centres is so poor that it is essential, for the sake of their residents, to improve them as rapidly as possible, notwithstanding a longer term community-based policy. While the funds available for this activity are limited, it would be very difficult to refuse funding in this field when it would directly benefit perhaps the most excluded of all groups in Romania. (Cited in ENIL-ECCL 2015b, p. 5) As a consequence of such reasoning, millions of euros have been invested in the renovation or building of new institutions between 2007 and 2013, under the pretence of improving disabled people’s lives. To what extent institutions should be improved was tackled in a number of reports, most importantly the Ad Hoc Expert Group Report on the Transition from Institutional to Community-based Care in 2009 (EC 2009). This report, endorsed by the EC, laid down the principle that the renovation of institutions ‘if allowed at all, [must be] tied with investment into systemic care reform and not exceed 10% of the overall expenses’ (EC 2009, p. 21). The EC (2014a) stated in its Thematic Guidance on deinstitutionalization and the initial report to the CRPD Committee (EC 2014c) that: Targeted investments in existing institutions can be justified in exceptional cases where urgent and life-threatening risks to residents linked to poor material conditions need to be addressed, but only as transitional measures within the context of a de-institutionalisation strategy. (EC 2014c, para. 98)

272  Ines Bulic Cojocariu Unfortunately, where ESI Funds have already been used to renovate institutions for disabled people, the EC has refused to take responsibility for what happens inside these settings. Having uncovered serious human rights violations in the Tophaz Special Home in Hungary (MDAC 2017), Validity Foundation (formerly Mental Disability Advocacy Centre) discovered that ESI Funds of approximately half a million euros had been used to improve the lighting and heating systems. The EC, however, refused to admit liability, stating that: Following this analysis, the Commission services concluded that as regards the operation of the Topház Special Home and hence the treatment of its residents, there seems to be no connection with any provisions of Union law. […] Furthermore, as the EU funding concerns only the financing of energy efficiency measures and not the treatment of the residents of the Topház Special Home, the alleged mistreatment has no further effect of prejudicing the Union budget and therefore there is no irregularity which would justify a financial correction. (Letter from the European Commission to Validity Foundation, 15 June 2018, p. 2) Although the Tophaz investments were made during 2007–2013, when the ESI Funds regulations were less specific on the social and healthcare infrastructure that can be funded, this EC reasoning is still very problematic. On one hand, it absolves the EC from any responsibility, other than if it was to fund (presumably from the European Social Fund) the staff involved in the acts of abuse or torture, and effectively allows Member States to maintain the system of institutional care. On the other hand, given that any investment has to be ‘maintained for at least 5 years after the final payment made to the beneficiary’ (Letter from the EC to Validity Foundation, 15 June 2018, p. 2), we can be certain that the Tophaz institution will remain open for the foreseeable future. Challenging the building of new institutions Having achieved EC commitment to support deinstitutionalization, which was translated into specific provisions in the 2014–2020 ESI Funds regulations, ENIL’s efforts turned to monitoring the implementation. Sadly, ENIL (2018) found that Member States continue to invest in facilities that perpetuate the segregation and isolation of disabled people, and use national funds to build new institutions. One of the reasons why the efforts of the EC and civil society to facilitate deinstitutionalization in the Member States have largely failed is because of the lack of consensus on what constitutes an ‘institution’. Despite several existing definitions (EEG 2012a, UN 2017), there is no agreement about not funding small institutions. Thus, when eight or more individuals live together in the same house – a service that is usually described by the Member States as ‘community living’ – the EC may not find this problematic. Instead, its approach is to ask for evidence

Independent living in the European Union  273 of institutional culture in the setting, which is difficult (if not impossible) to provide while the services are being planned or where there is no independent monitoring in place. To date, ENIL (2017c) has successfully convinced the EC that ESI Funds should not be used to fund ‘care villages’ for disabled people. This came as a result of advocacy in Estonia, where a number of ‘care villages’ were built during 2007–2013. These settings – typically consisting of six houses each accommodating 10 people with intellectual and psychosocial disabilities and located on the outskirts of villages – have a strict routine and house rules. The remote location of the care villages and the fact that the residents’ lives are strictly controlled were enough to convince the EC that this was not ‘community living’. However, the commitment to prevent similar practices, while publicly stated, has not been included in any written guidance to the EC geographical desk officers or the Member States. With regard to ‘small group homes’, which are the Member States’ default alternative to large residential institutions,3 the EC has had a largely inconsistent approach. The EEG successfully challenged the release of a call for proposals in the Czech Republic because a type of residential care facility eligible for funding had no maximum number of residents. Having agreed with the EEG that this could result in the building of new institutions, the EC asked the Czech authorities to revise the call based on non-compliance with Article 19 of the CRPD. At the same time, efforts by ENIL, Validity Foundation and the Hungarian Civil Liberties Union (letter sent to Zoltan Balogh, the Minister of Human Capacities, 23 February 2018) to stop the building of small group homes in Hungary have so far been unsuccessful. There, the government has allocated approximately €77 million to move an estimated 2,430 disabled people into 181 small group homes until the end of 2018, housing between eight and 12 individuals in single and double bedrooms. In February 2018, the three organizations raised serious concerns about the government’s failure to develop a range of community-based services, including personal assistance; the intention to develop ‘service centres’ (a form of ‘day centres’) in some of the old institutions; and the failure to close down institutions involved in the process. The fact that the residents, most of whom lack legal capacity, have not been given a choice of where and with whom they will live and that a number of homes will be located in remote areas are additional reasons against the project. In this case, the EC has sided with the Hungarian government, which continues to argue that the process is CRPD compliant. The government has gone so far as to claim that DPOs support this process, regardless of the fact that most are reliant on government funding for survival. As a result, the only thing that has changed following joint advocacy efforts to date are some of the locations of the group homes. It is worth noting that the EC expressed concerns that, should it block this investment in Hungary from going ahead, the government would simply reallocate the millions of euros for another purpose not related to deinstitutionalization. The EC has also argued that the disabled people involved in the process might

274  Ines Bulic Cojocariu be better off in the smaller institutions, even if they did not provide them with a chance at independent living. ENIL has not accepted such reasoning, arguing that reallocating funds from a process that cannot be called deinstitutionalization would not be such a loss. More importantly, it would set a dangerous precedent not only for other Member States, but also for Hungary, where a second call (currently under review) foresees ‘deinstitutionalization’ of a further 7,500 people. Calling for a better monitoring and complaints system From the beginning of ENIL’s advocacy efforts, it was clear that the monitoring of ESI Funds is inefficient. Although there is a framework for monitoring and evaluation, set out in the regulations, it is not sufficient to prevent investment in institutions or to detect whether projects that have been completed facilitate the right to independent living. With some notable exceptions, the EC officials (i.e. the geographical desk officers) are reluctant to ask for details or to analyze Member States’ project proposals. This is, to some extent, understandable, as the EC lacks the knowledge to establish compliance with the CRPD and, more generally, the time to sift through the thousands of projects. Instead, the responsibility for monitoring is generally passed on to the already under-resourced civil society. Although the managing authorities of the operational programmes can use ESI Funds (through the so-called technical assistance) to build the capacity of civil society to monitor investments, it is not in their interest to do so. The more projects go undetected, the fewer questions governments have to face. As a result, only where civil society organizations have been able to secure independent funding to monitor the use of ESI Funds is there more information about the projects funded. For these reasons, ENIL’s EU Funds for Our Rights campaign is calling for a better monitoring and complaints system. A report published in June 2017 (ENIL 2017b) set out what this system might look like, highlighting that it should go much further than the formal monitoring structures (i.e. the monitoring committees). While it is positive that some DPOs have a vote in the monitoring committees, ENIL’s experience has shown that even the best committees cannot prevent investments in institutions. Instead, investing in capacity building of national human rights institutions, DPOs and EC officials, as well as funding allocated at the national level to strengthen ESI Funds monitoring, could go some way to ensure a more efficient monitoring system. The recommendations of the European Ombudsman, Emily O’Reilly, who in 2014 carried out an own-initiative inquiry into respect for fundamental rights in the EU’s Cohesion Policy, support ENIL’s demands. The Ombudsman called on the EC to respect the European Charter of Fundamental Rights ‘in its entirety, in all its activities, including in the distribution and monitoring of ESI Funds’ (European Ombudsman 2015, para. 42). In order to ensure that ESI Funds are used in line with the EU’s human rights standards, the Ombudsman made eight recommendations, many of which focus on how ESI Funds are managed, the way complaints are handled and the steps the EC takes if the actions funded ‘amount

Independent living in the European Union  275 to a violation of EU law, including the Charter’ (European Ombudsman 2015, para. 48vii). This is significant because, without facing any repercussions (such as funds being suspended or recovered), it is unlikely that Member States will take the respect of EU law (the CRPD included) seriously. The Ombudsman’s recommendations were echoed by the CRPD Committee, which, having reviewed the EU’s initial report on the implementation of the CRPD, recommended that the EU: develop an approach to guide and foster deinstitutionalization and to strengthen the monitoring of the use of the European Structural and Investment Funds so as to ensure that they are used strictly for the development of support services for persons with disabilities in local communities and not for the redevelopment or expansion of institutions. The Committee also recommends that the European Union suspend, withdraw and recover payments if the obligation to respect fundamental rights is breached. (UN 2015 para. 51) To date, however, no changes have been made to the monitoring or the complaints system in the Member States, or at the level of the EC, and no actions have been taken to recover funds allocated to projects affecting disabled people. A need for meaningful involvement of disabled people Despite the European Code of Conduct on Partnership, which states the need to involve those that are most marginalized, disabled people are not meaningfully involved at different stages of ESI Funds spending. As a network bringing together mainly grassroots organizations of disabled people, some of whom have lived in institutions, ENIL has been promoting the involvement of disabled people in the use of ESI Funds since the beginning of our advocacy efforts. We have found that, with few exceptions, our members do not understand how ESI Funds work or what they can be used for. Moreover, considering the size of the ESI Funds projects, the majority of our members are unable to access this funding. Instead, the managing authorities tend to involve umbrella organizations, or ‘nationally representative’ organizations, unlikely to be critical of the government. Already close to power, these organizations are more likely to get a seat on the monitoring committee and to receive ESI Funds themselves (Stott 2018). Initially, ENIL has partnered with other civil society organizations (mainstream human rights organizations, service providers, think tanks) that have the capacity to monitor ESI Funds investments. Rather than just collecting information, we have worked in collaboration to identify common concerns, draft letters, organize meetings with the relevant geographical and policy desks at the European Commission and address Members of the European Parliament (MEPs). Starting with the EU Funds for Our Rights Campaign, we have focused on building the capacity of our members to become involved in ESI Funds monitoring and advocacy in their countries. While this does not preclude us from working with other

276  Ines Bulic Cojocariu organizations, it is important that we support the voices of those with firsthand experience of institutionalization and the lack of support to live independently. We have organized several regional events and a webinar, and have been working in collaboration with our members in Bulgaria, Portugal, Belgium, France and Slovenia, where we have specific concerns.4 ENIL has argued that Member States need guidance and more encouragement to implement the European Code of Conduct on Partnership in the form of recommendations and better monitoring. Importantly, there is a need for good practice on how to involve those who are most marginalized, including people living in institutions and those moving into new services in the community (using peer support or co-production, for example). Key to this is ensuring that the views and recommendations of those affected are taken into account and used to improve ESI Funds programming, implementation, monitoring and evaluation. Other issues Since November 2016, ENIL has increased the number of countries covered by our monitoring and advocacy to include those in Western Europe (such as France, Belgium, Germany and the Netherlands) and in the south (such as Spain, Portugal and Greece). Even though most of these countries do not have deinstitutionalization as a priority, this does not mean that EU or national funds are not being used to build or renovate institutions for disabled people. In France, Germany and Belgium, for example, no funding has been allocated to deinstitutionalization, despite the large numbers of disabled people in institutional care and a lack of alternatives. In partnership with our members and other organizations, ENIL is therefore advocating for deinstitutionalization to be a priority in the next programming period (2021–2027).

Conclusions Advocating for better use of ESI Funds remains one of the key priorities of the European Network on Independent Living. Independent living is not possible without having the systems in place to support individuals to live in the community, and ESI Funds provide an opportunity to reform outdated systems, pilot innovative services and provide the funding needed to support increased costs during the transition from institutional care to living in the community. Among the key challenges to be addressed by ENIL in the coming years is raising awareness of what ‘independent living’ and ‘deinstitutionalization’ really mean, and the extent of EU responsibility for achieving independent living in the Member States. The General Comment on Article 19 in itself will not lead to a better understanding of what it takes to support disabled people to live independently. What is required is concerted action at the European level and in the Member States themselves to achieve political commitment on this issue. Once there is commitment, funding can be channelled into the services and infrastructure that facilitate social inclusion and participation of disabled people.

Independent living in the European Union  277 In addition, the European Commission must be forced to take responsibility for how ESI Funds are used. Whether funds are wasted by not supporting deinstitutionalization at all or are used to prop up systems known to infringe people’s rights, that responsibility cannot lie just with the Member States. The next step, in this regard, is most likely strategic litigation, which would lead to jurisprudence on the application of the CRPD to actions funded by the EU. Until then, ENIL will be working on a case by case basis, challenging small and large projects that prevent disabled people from living independently, and raising the awareness of the European Commission, MEPs, governments and other stakeholders on the right to independent living.

Notes 1 The term ‘disabled people’ is used to reflect the fact that people are disabled by the environmental, systemic and attitudinal barriers in society, rather than by their impairment. This is in line with the social model of disability. 2 The countries where deinstitutionalization was identified as a priority are: Bulgaria, Czech Republic, Estonia, Greece, Hungary, Lithuania, Latvia, Poland, Romania, Slovenia, Slovakia and Croatia. 3 ENIL (2018) has evidence of the building of, or plans to build, group homes with ESI Funds in Slovenia, Bulgaria, Hungary, Romania, Lithuania, Estonia and Portugal. 4 For example, we are supporting the Centre for Independent Living Sofia in preparing a petition to the Petitions Committee at the European Parliament to challenge the building of small group homes for children and adults with disabilities.

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19 Towards an Afrocentric disability activism Opportunities and challenges of transnationalizing disability advocacy in Africa Privilege Haang’andu Introduction Disability activism is a well-established form of collective action the world over. Over the past years, disability activism has developed a strong transnational network that cuts across the North and South divide (Soldatic and Grech 2014). Interestingly, despite the heterogeneous socio-political, historical, cultural and economic environments from which disability movements start, disability activism has emerged with a unified front around the world (Soldatic and Grech 2014). The achievements of these collective action efforts are visible at the national level in the various legislative and policy initiatives that mainstream disability in socioeconomic development. At the global level, transnational activism culminated in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (UN 2006). Since its enactment in 2006, the CRPD has inspired national-level advocacy among disability civil society organizations as well as an unstoppable transnational disability activism for disability rights. As Soldatic and Grech (2014, p. 2160) note: ‘the mobilization and unification of “disability” at the transnational scale democratized the demos, whereby an unprecedented number of disability civil society actors actively participated in the formulation, conceptualization and articulation of what disability rights should be’. Increasingly, disability civil society actors transnationally organize to champion disability concerns for justice and rights. While disability activism has grown transnationally, there are unanswered questions regarding the appropriateness of universalizing disability knowledge and principles. As Grech (2011, p. 88) observes, ‘the Western disability studies and its tenets, notably the social model of disability and the language of “rights”, are transferred indiscriminately from North to South and absorbed almost unquestionably by development agencies, Southern organizations and other intermediaries’. The assumption is that ‘theories and writings from the West are transferable across cultures with a few modifications here and there’ (Grech 2011, p. 88). For example, the question of how best to develop impactful activism with, for and by persons with disabilities living within the African context remains very complex

282  Privilege Haang’andu and unresolved (Mji et al. 2011). Disability activism in Africa, in general, has taken a Western-centric positivist and deontological approach where activists pressure their governments, as duty bearers, for legislative reforms and enhancement of individual rights. At the same time, there is a growing literature on disability in Africa suggesting that, despite the universalization of the concept of disability from North to South, disability issues in Africa are uniquely shaped by peculiar ideational and social factors, cultural idiosyncrasies, beliefs and linguistic fables (Burck 1999, Aldersey et al. 2014, Haang’andu 2018,). In contrast to the predominantly Euro-American positivist worldviews and the individual rights approach, the African ontological experience is encapsulated into ‘a social system of interrelatedness whereby people’s humanity is determined not by their personal qualities, but in terms of how they relate to all in their community’ (Boon 1996 cited in Mji et al. 2011, p. 365). In this chapter, I provide an overview of disability activism in Africa within the transnational context. Taking both a historical and contemporary approach to disability collective action, I argue that, despite the numerous benefits of transnational activism, disability activism in Africa would be more effective if built around an Afrocentric ethos that takes into account existential factors of society and the experience of disability. As Barker and Murray (2010, p. 227) argue, for Disability Studies and activism to move forward, it is imperative to interrogate the universal approach to disability naturalized within the social model of disability, and in doing so to enact what might be termed a ‘decolonization’ of Disability Studies [emphasis added]. This chapter attempts to fill this conceptual gap to enhance the effectiveness of disability activism in Africa. In what follows, I discuss the historical foundations of disability activism in general before indigenizing disability activism in Africa. Thereafter, I present four existential factors1 challenging the application of the Western-centric disability paradigm before proposing an Afrocentric approach to disability activism.

Western foundations of disability activism In Western scholarship, two major approaches of disability characterize activism: the medical and the social models (Walker and Townsend 1981, Borsay 1986, Oliver 1986, Rioux 1996, Barnes and Mercer 2005, Shakespeare 2013, StoneMacDonald and Butera 2014). The medical model’s foundations are associated with the increased incidence of impairment during World War II and with concomitant advances in medical specialties (Ingstad 1995, Bury 1996). Here, disability is understood ‘as a defect or sickness which must be cured through medical intervention’ (Kaplan 1999 cited in Stone-MacDonald and Butera 2014, p. 3). Disability is detected based on specific characteristics and ‘assigned to a category such as physical disabilities, mental disabilities, or sensory impairments’ (StoneMacDonald and Butera 2014, p. 2). Ferguson and Ferguson (1995) criticize the

Towards an Afrocentric disability activism  283 model for its heavily clientele approach, ‘disabling’ connotations and its abstraction of persons with disabilities from families into artificial residences, hospitals, ‘homes’. The medical model of disability activism necessarily led to the institutionalization of disability, where people with disabilities were secluded from the rest of society for rehabilitation until they were ready for reintegration. Criticisms of the medical model resulted in conceptual changes in the way disability activists and scholars approached the subject and how disability organizations interpreted and identified themselves; it particularly led to demands for de-institutionalization of disability (Oliver 1986, Ferguson and Ferguson 1995), hence the social model. The social model, therefore, emerged as a conceptual challenge to the medical model (Vanhala 2010, Shakespeare 2013). The social model seeks to redefine disability to foster socio-economic inclusion and, more importantly, individual egalitarianism (Oliver 1986, Stone 2002, Michalko 2009, Aldersey et al. 2014, Stone-MacDonald and Butera 2014). The genesis of this model is largely associated with the British Union of Physically Impaired against Segregation (UPIAS) (Shakespeare 2013, Evans et al. 2016). However, the actual formulation of the social model in its current form, which makes stark distinctions between impairment and disability, is attributed to sociologist Michael Oliver, who only joined UPIAS in 1983 (Shakespeare 2013). It was the departure from the medical model that resulted in the ‘rights talk’ in relation to disability among emerging organizations founded and led by people with disabilities (Vanhala 2010). Within these groups, disability activists began to challenge the then dominant view of disability as a medical defect or pathological limitation lying with the individual. Activists articulating the ‘social model’ of disability transformed the disability political identity from a biomedical one focused on an individual’s impairment to an identity based on the quest for equality within a society that is structurally and culturally biased against people with disabilities (Vanhala 2010). The social model, however, despite its entrenched influence on academics and activists, is not without its serious critics. Some scholars argue that criticisms against the medical model were ill-founded and a misrepresentation of the model (Shakespeare 2013). Shakespeare, for example, argues that medical sociology has never conceptualized disability purely as a bodily limitation but has always recognized the social setting in which disability is experienced (Shakespeare 2013). Shakespeare (2013) further argues that the social model exaggerates the distinction between impairment and disability. By stressing this distinction and claiming that impairment is physical and disability a social attribute, Shakespeare argues that the social model downplays the role of impairment in the lives of people with disabilities. He argues that even in a perfectly accessible world where society does not discriminate against people with disabilities and people with disabilities have every possible aid, they would still be disadvantaged compared to those who are not disabled. In other words, the removal of social barriers does not amount to the elimination of disablement (Bury 1996, Shakespeare 2013) and to stress that only social barriers are the causes of disability is to miss the core experience of living with a disability. Shakespeare and Bury are not arguing that social and political barriers are trivial to creating an existentially viable environment for people with

284  Privilege Haang’andu disabilities, but that disability theory must be backed up by empirical and testable hypotheses. This chapter endeavours to develop an empirically testable hypothesis for developing impactful disability activism in Sub-Saharan Africa (SSA) through the strategic engagement of endogenous ideational factors, agents and structures that contextually matter. A further argument is about the arbitrariness of the medical versus social model dichotomy. Nordic countries, for example, fall under neither of the two models (Shakespeare 2013). Instead, their disability policies are anchored in their traditionally strong welfare states with negligible traces of disability activism. Similarly, disability groups in the United States follow more the ‘minority group model’ patterned after the country’s political history of civil rights movements and individual rights pursuit than either the medical or social models (Shakespeare 2013). The minority group model, sometimes also known as the ‘key population model’, however, is not specific to disability but applies in general to marginalized groups in society, such as gays and lesbians, and, in some parts of the world, HIV/AIDS patients. Because of their global influence, Western conceptualizations of disability and the approaches adopted to enhance development-inclusiveness are an important prerequisite to understanding disability activism in Africa. The medical and the social models, through the agency of transnational actors, have influenced disability activism and policy design in Africa. Unintentionally, however, these models have obscured other important conceptual concerns, such as accounting for ontological congruence of these universalized models of activism in SSA. This chapter seeks to address this understudied gap.

Development of disability activism in Africa Through the agency of transnational actors (states, activists, academics and international organizations), research and activism in disability and its intersectionalities with various social policy issues are on the increase in Africa. Disability activism has evidently yielded positive developments for people with disabilities in Africa. The Norwegian SINTEF Health Research, for instance, has carried out robust surveys of living conditions of people with disabilities in Zambia, Malawi, Namibia and Zimbabwe, in collaboration with local disability organizations (Loeb et al. 2008). Similarly, several studies have been carried out on important intersectionalities, such as HIV/AIDS (Groce et al. 2011, Nixon et al. 2014, Yoshida et al. 2014, Tun et al. 2016), to inform policy advocacy. There are also several studies on poverty, education and health care (Kisanji 1998, Mamboleo 2009, Stone-MacDonald and Butera 2014, Cleaver 2016). Despite this scholarly impetus, and the interventionist works by non-governmental organizations (NGOs) and state actors, disability activism in Africa remains relatively underdeveloped in comparison to other parts of the world. Increasingly, however, African governments have shown some willingness to address concerns about disability (Mamboleo 2009) through domestic legislation and residual welfare programmes. The passage of the CRPD has had considerable influence on African activists and

Towards an Afrocentric disability activism  285 governments, leading to the proliferation of domestic disability legislation modelled on the CRPD. Prior to the passage of the CRPD, the UN declared 1983–1992 the Decade of Disabled Persons, a resolution that significantly influenced African leaders, who later declared 2000–2009 the African Decade of Disabled Persons and two years later adopted the Plan of Action at the Pan African Conference on the African Decade of Disabled Persons (African Studies Centre Leiden 2008, Stone-MacDonald and Butera 2014, Haang’andu 2018). Influenced by the transnational movement and its advocacy, Zambia became one of the earliest SSA countries to adopt a rights-focused disability legislation, the Persons with Disabilities Act of 1996. Besides prohibiting discrimination based on disability in education, healthcare provision and employment, it established a supreme statutory disability monitoring body, the Zambia Agency for Persons with Disabilities. The Act was amended to respond to new demands raised mainly by the CRPD, resulting in the 2012 Persons with Disabilities Act. As of May 2018, the Zambian advocacy landscape had over 120 disabled people’s organizations compared to only a handful in 2000, a sign of growth in disability activism in the country. This growth is widespread on the continent. Kenya also passed rights-based disability legislation, the Persons with Disabilities Act of 2003 (Mamboleo 2009). The Kenyan Act prohibits discrimination in employment based on disability. The Act also entitles people with disabilities to accessible environments to enable them to access buildings, roads and other social amenities as well as assistive devices and other equipment to promote their mobility. The Act further stipulates that no person or learning institution shall deny admission to a person with a disability, both in mainstream and special education (Mamboleo 2009). Malawi passed rights-based disability legislation in 2012, having earlier passed the Handicapped Persons Act of 1971, which was largely influenced by the medical approach rather than the rights approach. Additionally, the Constitution of Malawi guarantees the right to non-discrimination based on disability under section 20.2 In southern Africa, South Africa has the most advanced social programmes in disability (Haang’andu 2018). South Africa’s constitution prohibits unfair discrimination against people based on disability or health status. From 2009, South Africa had a ministry dedicated to disability until it was dissolved in 2014. It is an outlier case, with its generous disability programmes inherited from the apartheid welfare system (Kelly 2016). The disability grant3 is a means-tested programme that offers qualifying citizens income support in monthly grants (WHO 2011, p. 70). The government provides a means-tested, non-contributory monthly subsidy of R1500 (US$100) to eligible people with disabilities, mainly those who are unable to work or to support themselves financially through other means (Kelly 2016, Haang’andu 2018). Although Botswana has some disability programmes, and a vibrant disability movement, its constitution has no direct prohibition to discrimination based on disability. The constitution generally prohibits discrimination but does not grant specific protections to people with disabilities (African Disability Rights Yearbook 2014). Botswana is party to the CRPD but, like other

286  Privilege Haang’andu Westminster parliamentary systems, it requires enabling legislation through ­parliament to facilitate enforcement. While these are strong testimonies to the influence of transnational advocacy, it is also clear that the Western-centric models of disability activism have had limited, and sometimes counterproductive, effects on the African landscape. The main reason for the limited success (and even failure) of existing activist models is that they do not take into account the unique historical, sociological, cultural and political foundations that inform the experience of disability in Africa. These foundations render the existing activist models incongruent and inconsequential. The next section substantiates this point.

African existential factors challenging the Western-centric disability paradigm In today’s era of globalization, transnational actors play a key role as agents of policy transfer and policy learning (see, for example, Hall 1993, Orenstein 2008). In disability studies, Soldatic and Grech (2014), among others, have championed transnational disability studies. No doubt, transnational actors have mobilized unified efforts for the pursuit of justice for people with disabilities (Soldatic and Grech 2014). Soldatic and Grech (2014) give several examples of positive developments from transnational coalitions working against colonially driven impairment and disablement, one being the British Court’s ruling acknowledging colonial violence on the Mau Mau people of Kenya that resulted in deaths and disablement. Generally, transnational disability advocates have raised significant political consciousness about the ‘social suffering’ of people with disabilities. In Africa, transnational actors’ campaigns and advocacy, as stated earlier, have galvanized significant political support for legislation and policy reforms. Although several African states have passed parliamentary acts legislating disability in adherence to Western-driven universalization of rights, there is little evidence of measurable commitment to policy implementation (Mamboleo 2009). During my three months of doctoral field research in Zambia and Malawi in 2018, disabled people’s organizations (DPOs) consistently noted the lack of implementation of existing legislation and policy frameworks. People with disabilities are discriminated against in many ways and enforcement mechanisms are non-existent. For example, despite the law providing for equal access to education for people with disabilities in Zambia, Malawi, Zimbabwe and Kenya, there is no matching provision of learning materials in Braille or use of sign language for people with visual and hearing impairments respectively. During my doctoral research in Zambia, international organizations supporting disability work and DPOs reiterated concern for the lack of a unifying national sign language. In 2016, the Electoral Commission of Zambia printed ballots in Braille for the first time. However, Zambian DPOs noted that the electoral commission did not have systematic documentation of the participation of people with disabilities in the election. In 2005, the Third Ordinary Session of the Labor and Social Affairs Commission of the African Union, the key organ that manages the African

Towards an Afrocentric disability activism  287 Union’s social security, did not mention disability in its report (Haang’andu 2018). In SSA countries, therefore, despite the ubiquity of organized collective action, disability policy is peripheral and is addressed only haphazardly. Although activism has yielded significant legislative reforms, the reforms do not correspond with demonstrable efforts to equalize the social, political and economic environment for people with disabilities. The question, therefore, is why, despite the evidently sustained and aggressive transnational advocacy and mobilization for disability protections and the apparent political willingness to adopt disability legislation, do most African states still have less developed social programmes for people with disabilities? Why is transnational activism, despite its acceptance by policymakers, still not yielding significant socio-economic and attitudinal transformations in SSA? Why is this ‘political amenability’ to advocacy not matched with social transformation against discrimination and credible structural, fiscal and programmatic commitment for inclusiveness? In the hope of beginning to address this gap, I demonstrate four empirical and conceptual factors that challenge the universalization of Western-centric disability knowledge. In all four, Western-centric epistemic universalization is not only incompatible with local knowledge, but also counterproductive to engendering locally acceptable and sustainable policy interventions for people with disabilities in the context of the SSA. Therefore, if not carefully conceptualized, the transnational effort to secure the rights of people with disabilities could actually undermine chances for meaningful reforms (also see Soldatic and Grech 2014). Transnational ideology and political/economic power asymmetries Despite their human rights benefits, transnational activists’ policy agendas are neither politically nor ideationally neutral (Haang’andu 2018). Ideas and institutions in general are contested. As Grech (2011, p. 88) aptly puts it, ‘there is no possibility of disinterested or neutral knowledge’. As proposal actors (Orenstein 2008), transnational activists have agendas. Political science realists argue that transnational activists are transmitters of neoliberal political and economic agendas of the politically and economically strong (Krasner 1976; see also Haang’andu 2018). Similarly, target countries for policy change are not ideationally, cognitively or politically neutral vis-à-vis policy receptivity. This reinforces the neoliberal argument about universalizing one-sided Western ideologies across autonomous societies with their own intrinsic identities and norms. Perhaps this raises a more complex question (which I cannot cover in this chapter) about why countries in SSA, despite their own interests in epistemic autonomy, accept transnational ideologies and legislative cooperation (even when they have no intention of implementing them). The implication for disability activism and policy reform is that SSA countries, for political appeasement and reputation, will ratify international instruments that transnationalize disability norms without material commitment to implementing such policies. And even if they had material commitment to implementation, they would face ideational challenges at the local level where the disability existential

288  Privilege Haang’andu realities are incongruent with transnational ontological propositions. Because of undue power influence and hidden political ends, SSA governments continue to adopt policies, ratify international treaties and protocols, and even domestically legislate transnational principles with no intent to enforce them (Haang’andu 2018). It is not irrational for host governments to accept legislative propositions accompanied by economic benefits and other political incentives with no intention of implementing such programmes. Nor is it irrational for them to not directly apply contextually inappropriate maxims knowing the uniqueness of their respective contexts. This helps neither the transnational activists’ agenda nor people with disabilities who urgently need solutions to their context-specific challenges in SSA. Norms and institutional legitimacy Second, any meaningful activism should be based on a coherent and contextual understanding of institutions, their structures and operations. The assumption that institutions have a universal character often leads to the pitfall that they can resolve all social problems regardless of cultural and normative circumstances (Haang’andu 2018). In this case, social science scholars have shown that the logic of changing formal rules (through legislation) being sufficient to change human behaviour is flawed. Douglas North (1994), for example, argues that while it is easy to change formal rules overnight, informal norms, which are the anchor for belief, identity, knowledge and behaviour, usually change only gradually. The logic here is that institutions are birthed through social interactions and they are often a representation of people’s cultural-cognitive values and informal beliefs. Institutions and their enforcement build on and reinforce informal norms and beliefs. They create, because of repeated human behaviour in response to them, reciprocal expectations and standards. In other words, they create a culture. Activists should understand that changing formal rules does not, therefore, guarantee simultaneous change of informal norms. The foregoing has important ramifications for the transnationalization of disability activism, particularly to SSA. First, as Grech (2011, p. 89) aptly observes, when disability knowledge and policy is determined by the West, ‘it implies that it is theoretically ill-equipped to deal with majority world views and the nuances of majority world contexts (historical, social, economic and political)’. Activists should comprehend that brokering agreements at the UN or through political institutions on disability policy for all nations does not guarantee behavioural change of attitude towards people with disabilities in SSA (Haang’andu 2018). Given the cultural-cognitive embeddedness of disability in SSA, it is important to understand that whatever policy interventions are made, they must confront the hard reality of the deep ontological ideational understanding of disability (Haang’andu 2018). The social challenges of disability in SSA are not merely due to the societal barriers for the realization of the rights of people with disabilities. Rather, disability is a social issue because its very ontology is a constitutive element of how societies integrally perceive the world. As such, any activist efforts in these contexts need to employ effective discursive frames towards the public,

Towards an Afrocentric disability activism  289 through carefully selected strategic intermediaries, to convince them that reform of the status quo is necessary (Kingdon 2003). Like any other society, SSA societies have unique cultural idiosyncrasies that are difficult to change overnight; for example, their strong adherence to family and communal ties (for disability in the Global South in general, see Barker and Murray 2010, Grech 2011). During my field research in Zambia, a leader of a women’s organization remarked that over 90 per cent of domestic child sexual defilement cases were perpetrated by close relatives and not by unknown strangers. The greatest stumbling block to fighting sexual violence and rape of women and young girls is not the lack of punitive laws. Instead, it has been that families decide to protect violators to prevent ‘family shame’. In this example, despite punitive legislative provisions, sociological norms, beliefs and practices (which Elinor Ostrom, 2000, refers to as evolutionary and cultural social norms, which create reciprocal expectations) stifle the prosecutorial prospects. While most of the cases remain unreported due to these sociological justifications, in some instances victims report violations but withdraw complaints yielding to family and societal pressure to avoid family shame. Often, families prefer secret domestic dispute settlement to judicial proceedings that could potentially result in the arrest and prosecution of one of their kith and kin, sometimes the family breadwinner. This family and social phenomenon has serious empirical implications for disability activism and policy design in SSA. First, disability activism should be based on concrete sociological opportunities it seeks to advance or challenges it seeks to reverse. For example, several DPOs in Zambia and in Malawi mentioned that some sociological factors reinforce rather than abate gender-based violence against girls and women in general. In particular, familial protectionist tendencies exacerbate sexual abuse of girls and women with disabilities whom some SSA societies believe possess spiritual powers to cure sexually transmitted diseases. DPOs, particularly those representing people living with albinism, reported common beliefs that body parts of people with albinism, used in some herbal concoction, possessed magical power to improve one’s business fortunes. In some cases, families have been at the centre of facilitating body mutilation and killing of people with albinism for monetary benefits. How ought activists to confront such sociologically entrenched barriers? A disability activism that insists on individual rights supremacy is not only incongruent to the experience of people with disabilities in this context, but is counterproductive to their challenges. With all the social expectations historically created and sustained, it is unlikely that individuals with disabilities, so embedded within this social fabric, would seek litigious measures against their immediate family, community or nation for perceived violations. Homogenizing disability policy based on Western experience and ideology defies logic, in this context. Ethnolinguistic fractionalization One of the conspicuous characteristics of SSA is its cultural heterogeneity. Political scientists have theorized about the implications of ethnolinguistic fractionalization. One of the arguments made is that ethnolinguistic fractionalization

290  Privilege Haang’andu complicates institution building and policy change (Mauro 1998, Besley and Persson 2014). In an ethnolinguistically fractionalized society, diversity of ideational perspectives makes it hard to impose a homogenous policy with exogenous epistemic and normative values. The assumption that disability knowledge, policies and norms founded in one civilization would seamlessly localize in ethnolinguistically fractionalized SSA countries is not only imposition but conceptual fallacy (Haang’andu 2018). Because of their ethnolinguistic fractionalization, SSA societies are ideationally fragmented and require more complex strategies of disability policy response than the Western neoliberal homogenization agenda. As demonstrated in the earlier examples of people living with albinism and of girls and women living with disabilities, the existential realities of people with disabilities in each SSA country, both in terms of challenges and opportunities, are uniquely shaped by local ideational factors that might not be amenable to a universal policy prescription. In addition, unlike Western societies that have strong historical legacies of national coherence, many SSA countries are still confounded with postcolonial inter-ethnic fragmentations, often exacerbated by exogenously supported conflicts sponsored by raw materials–seeking Westerners, as is the case in the Democratic Republic of Congo and recently in Rwanda, Burundi, Angola and Mozambique. Ironically, these neoliberal interventions do not only engender civil strife, but they also cause impairment and increase the burden of disability in SSA (Grech 2011, Meekosha 2011, Soldatic and Grech 2014). Building universal disability regimes that command voluntary multi-ethnic acceptance, then, is much more complex than transnationalizing unquestioned Western-founded ideologies (Haang’andu 2018). The contested place of the judiciary in a non-individualist African social value system In entrenched Western democratic societies, where individual liberties and freedoms are central to civilization, court systems and litigation are effective. In these societies, judicial processes through institutionalized courts are strong and binding on all parties involved. The court system as we know it today is not indigenous to SSA. The judiciary, as an arm of government, is a colonial inheritance. Like other colonial institutions of governance in SSA, the concept of the Westerncentric judiciary is, understandably, still struggling to entrench itself in SSA. This has created two problems. First, in general, SSA populations are not as litigious as Western countries, especially on civil matters. The sense of communal solidarity and collective responsibility and shame, also known as the Pan-African philosophy of ubuntu (Mji et al. 2011), is more binding than the doctrine of individual exoneration through judicial victories (Haang’andu 2018). Second, judicial impartiality in SSA remains a significant problem. Some scholars have argued that judicial systems in developing countries in general are weak (Besley and Persson 2014). In a robust study of adjudication of electoral disputes in SSA, O’Brien Kaaba (2015) documents the challenges of judicial neutrality throughout SSA. In all SSA countries, constitutions allow presidents to appoint judges,

Towards an Afrocentric disability activism  291 often without tenure of office, leaving judges’ security of office to the caprices of ­politicians. Often, the result has been that judges are politically pliable. In rare cases when judges exhibit independence and rule against government officials, rulings are ignored or publicly ridiculed, and sometimes judges are removed. The foregoing two points have far-reaching implications for disability activism. First, it means that people with disabilities, like everybody else, respect more collective purposes than individual ‘rights’, as is the case in Western civilizations (see also Grech 2011). These social ties, then, shape the disability experience in a way, creating unique challenges and opportunities for policy intervention. Second, the implication of weak judicial systems for the transnationalization of disability activism is that there is no predictability as to whether court systems would act as credible remediation for disability causes. In SSA, where government executives frequently influence the judiciary or defy judicial rulings, it is difficult to imagine courts would, contrary to Vanhala’s (2010) arguments for the relevance of courts in Canada and in the United Kingdom, be credible means to champion disability ‘rights’, especially when judicial outcomes have punitive financial implications on arms of government (Haang’andu 2018). Given these challenges, how else could we conceptualize an effective Afrocentric disability activism with a greater policy impact without implying or intending to subvert local knowledge, values and societal autonomy? I now turn to detailing the alternative.

Towards an Afrocentric paradigm of disability activism To begin to make disability policy pathways that crack into African societies’ sociological and philosophical foundations, disability activism in SSA should be informed by the African understanding and experience of society. I propose building an Afrocentric disability activist paradigm whose foundations derive from contextual ontology. By design, the African ontology is characterized by a culture of reciprocity, dignity, humanity and mutuality in the interests of building and maintaining communities with justice and mutual caring (Gyekye 1997). This African philosophy presents profound opportunities for the reconceptualization of a context-responsive model of disability activism within the SSA context. Since it is among communities, families, and sociological groups and associations that disability frames are constituted and sustained, it is also from among them that ideational spinners for conceptual shifts should emerge. Transnational activists’ preoccupation with political processes for disability policy change and rights promotion misses this point. While political institutions play a significant role in the policy process, they are ill-positioned to transform entrenched non-formal cultural-cognitive beliefs and attitudes. Instead, it is civic educators (traditional leaders, religious leaders, community leaders, teachers, etc.) that are best placed to be ideational entrepreneurs. Civic educators, particularly in the African context, are strategically positioned to reinforce or alter social beliefs, challenge epistemological positions, and to help realign norms and values. The pitfall of Westerncentric disability activism is both its assumed universalist disability knowledge

292  Privilege Haang’andu paradigm as well as its methodological approach that, despite ideational variation, seeks institutional expansion of individual rights in an intrinsically communitarian society. To amplify this point, let us consider a concrete example. In the early 2000s, transnational activists sponsored and supported a vibrant gender activism in Africa that resulted in a plethora of women-led activist organizations. At inception, there was a strong focus on criminalizing certain social ills: for example, spouse inheritance, sexual cleansing, gender-based violence and marriage of underaged girls. Certain male–female interactions ordinarily taken for granted in African societies came under scrutiny and many were deemed violations against women’s rights. Although these efforts were obviously important in trying to deter abuse of women and in enhancing women’s rights, transnational and domestic organizations that worked to reverse these trends in many African countries eventually realized, after decades of working through legislative avenues of government with little success, that working through community leaders, such as chiefs and heads of religious organizations, incorporating endogenous norms, values and ideas, had a greater impact in reversing the trends (interview with Sydney Watae, former Democracy and Governance Advisor to USAID-Zambia, 5 January 2018). In fact, in some cases, forceful use of the law was counterproductive because societies became more reticent about occurrences of some of these ills. For example, the Zambia National Women’s Lobby, the largest women’s movement in Zambia with a wide regional reach in southern Africa, acknowledged during an interview that it had learned it needed to desist from framing its campaign messages as ‘promoting women’s rights’ in order to make an impact on the heavily patriarchal Zambian society. The justification for using alternative frames was that the patriarchal Zambian society would be aversive to such language and, therefore, resistant to transformation. Yet the result of its advocacy was the attainment of communities that developed a new sense of respect for women and their contribution to society, condemned physical and emotional abuse of women in marriage, and placed a heightened value on education of the girl child. The organization also reiterated the importance of working through informal structures as opposed to concentrating on legislation. This point was reiterated by a senior Zambian government official at the Ministry of Gender and Child Development during an interview: ‘we do not want to be a police state. We need transformation of attitudes and not mere forced compliance to legislation’ (interview with the author, 8 May 2018). This illustration serves to stress a couple of points. First, understanding ideational context is fundamental for activism on sociologically entrenched phenomena like gender and disability. Assumptions of universal categories only serve to stifle progress in ideational transformations. To maximize their impact, transnational activists need, therefore, to avoid assuming that a knowledge paradigm generated in one cultural-cognitive context has universal resonance. Second, while strengthening of institutions is important and, in fact, essential for sustained policy, political institutions are not always the best entry points for ideational transformation. The above illustration shows that informal community structures can be more effective in proliferating alternative worldviews and in reversing historical frames

Towards an Afrocentric disability activism  293 about taken-for-granted social experiences. In African settings, elected leaders, frequently construed as ‘seasonal visitors’ who show up near election time, are often less trusted than community and religious leaders in norms-related issues. In countries like Malawi, Zambia, Botswana and Ghana, traditional ethnic leaders and religious leaders wield both political and ideational authority over communities. They are influential normative spinners and can function as strategic ideational entrepreneurs for new knowledge shifts. They are better placed, socially, to be carriers of new disability frames and to be agents of ideational change than conventional political institutions. It is important, therefore, that transnational disability policy activists understand these socio-political dynamics and invest their resources where they would have greatest impact. To build an effective Afrocentric disability activism with local relevance, an appeal to the dominant and pre-existing communitarian sense of solidarity, family care and social cohesion offers important promise. In their article ‘The politics of promoting social protection in Zambia’, Kate Pruce and Sam Hickey found that solidarity principles, built on the strong tradition of family and social care and support for members at the local level, were the main support for the country’s welfare system (Pruce and Hickey 2017. Despite some challenging sociological factors, communal solidarity, which is a strong characteristic of many African societies, particularly the Bantus spread across southern Africa, is a profound opportunity for disability social policy development among African societies. Writing about American disability policy and bemoaning the upsurge of individualism in American society, Ferguson and Ferguson (1995) highlight the importance of the mediatory functions of family structures in deinstitutionalization of disability. In African societies, communitarianism is a given resource and an essential attribute of Africans’ worldview. As global disability social policy trends are shifting away from institutionalization, societies with strong family and social foundations and solidarity are at an advantage to implement informal disability support systems that de-emphasize isolation and stigma. In the 1990s, African communities, among the worst affected by HIV/AIDS globally, appealed to this philosophy, adopting home-based care of HIV/AIDS victims rather than institutionalized hospices. Today, global organizations combating HIV/AIDS, such as the United States Agency for International Development (USAID), the US President’s Emergency Plan for AIDS Relief (PEPFAR) and the United Nations Programme on HIV/AIDS (UNAIDS), have acknowledged the profundity of home-based care not just for care itself, but also for combating social stigma and discriminatory sociological frames which have prevented individuals from seeking voluntary HIV testing and treatment. Most HIV/AIDS programmes now place home-based care at the core of care, and policy organizations and activists attribute much of the success in reducing the pandemic, through increased education about risky behaviour, reduced stigma and improved care, to the homebased care structure. Family and communal solidarity could be an equally important concept for turning around negative ideational frames, ending disability stigma and implementing successful disability programmes. The Western-centric stress on individual rights does not fit into this ontological perspective.

294  Privilege Haang’andu

Conclusion This chapter raises important questions about the transnational agenda for ­disability activism. It asks questions about disability knowledge and experience, whether it can be universalized, and how precision of ontological variation could sharpen disability activism in Africa. The chapter has demonstrated that disability activism, despite its transnational orientation, needs a critical rethinking about its unquestioned universalist assumptions and its responsiveness to local ontological variations. Indeed, the existence of indigenous or local ‘cultural models’ of disability is evidence that drawing generalized conclusions about the ways in which postcolonial cultures experience disability cannot account for either the ontological or the material conditions which are formative in constructing disabled lives (Livingston 2011). Not only has this chapter demonstrated empirical factors that show this ideational variation between the Western and the African context, but it has also illustrated that a disability activism devoid of such hermeneutic craft is counterproductive to the disability agenda. From my interaction with transnational activists working in Zambia and in Malawi, it is evident that this conversation needs greater attention among disability practitioners and those that advocate policy reforms. Having pushed Westerncentric disability policy ideas over the last two decades with very little normative, ideational or cultural-cognitive change, the time is ripe for disability scholars and activists to rethink the modus operandi. Of course, I do not claim that all failure for progressive disability policy interventions boils down to this single factor. But, as many disabled people’s organizations in Zambia and in Malawi mentioned, if policymakers are products of ill-informed, myth-laden and discriminatory social structures, they are unlikely to counter the social trends with revolutionary policy and resource commitment. Building an Afrocentric paradigm for disability activism is not only viable (as evidenced in other equally sociologically entrenched policy areas, such as gender and HIV), it is crucial for relevance and ideational legitimacy. While this chapter references isolated empirical illustrations, future research needs to strengthen the validity of this conceptual framework with more robust data in SSA. My research in Zambia and Malawi is one such project trying to do that. Another factor that needs further attention is the study of normative similarities among African Bantu societies to test if a generalizable activist model within certain African communities would apply and to see the extent to which specific models would be required. Scholars like Mji and colleagues (2011) and Livingston (2011) suggest more Afrocentric convergence than diversity on key communitarian normative values, suggesting viability of a more unified Afrocentric activism thrust.

Notes 1 These four conceptual illustrations were originally published in my earlier article, ‘Transnationalizing disability policy in embedded cultural-cognitive worldviews – the case of Sub-Saharan Africa’, in Disability in the Global South (Haang’andu 2018). I use them for this chapter with some adjustments and, gratefully, with the permission of Disability in the Global South.

Towards an Afrocentric disability activism  295 2 ‘Discrimination of persons in any form is prohibited and all persons are, under any law, guaranteed equal and effective protection against discrimination on grounds of race, color, sex, language, religion, political or other opinion, national, ethnic or social origin, disability, property, birth or other status or condition.’ 3 According to the Social Assistance Act of 2004, someone is eligible for a disability grant if ‘he or she is, owing to a physical or mental disability, unfit to obtain by virtue of any service, employment or profession the means needed to enable him or her to provide for his or her maintenance’. Section 3(c) of the 2008 Regulations to the Social Assistance Act further defines eligibility in relation to employability and an applicant is eligible if ‘he or she is unable to enter the open labor market or support himself or herself in light of his or her skills and ability to work’ and does not unreasonably refuse to any income-generating employment within his or her capabilities.

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296  Privilege Haang’andu Grech, S., 2011. Recolonizing debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South. International Journal of Inclusive Education, 15 (1), 87–100. Groce, N., Kett, M., Lang, R. and Trani, J., 2011. Disability and poverty: the need for a more nuanced understanding of implications for development policy and practice. Third World Quarterly, 32 (8), 1493–1513. Gyekye, K., 1997. Tradition and modernity: philosophical reflections on the African experience. Oxford: Oxford University Press. Haang’andu, P., 2018. Transnationalizing disability policy in embedded cultural-cognitive worldviews: the case of Sub-Saharan Africa. Disability and the Global South, 5 (1), 1292–1314. Hall, P.A., 1993. Policy paradigms, social learning, and the state: the case of economic policymaking in Britain. Comparative Politics, 25 (3), 275–296. Ingstad, B., 1995. Disability and culture. Berkeley, CA: University of California Press. Kaaba, O.B., 2015. The challenges of adjudicating presidential election disputes in domestic courts in Africa. African Human Rights Law Journal, 15 (2), 329–354. Kelly, G., 2016. Hard and soft medicine: doctors’ framing and application of the disability category in their assessments of grant claimants’ fitness to work in South Africa. Cape Town: Centre for Social Science Research, University of Cape Town. Kingdon, J.W., 2003. Agendas, alternatives, and public policies. New York: Longman. Kisanji, J., 1998. Culture and disability: an analysis of inclusive education based on African folklore. Presented at the International Expert Meeting and Symposium on Local Concepts and Beliefs of Disability in Different Cultures, Bonn, Germany, 21–24 May. Krasner, S., 1976. State power and the structure of international trade. World Politics, 28 (3), 317–347. Livingston, J., 2011. Insights from an African history of disability. Radical History Review, 94, 111–126. Loeb, M.E., Eide, A.H. and Mont, D., 2008. Approaching the measurement of disability prevalence: the case of Zambia. ALTER-European Journal of Disability Research/ Revue Européenne De Recherche Sur Le Handicap, 2 (1), 32–43. Mamboleo, G.I., 2009. Predictors of attitudes toward disability and employment policy issues among undergraduate students at the University of Nairobi. PhD Thesis. University of Arizona. Mauro, P., 1998. Corruption and the composition of government expenditure. Journal of Public Economics, 69 (2), 263–279. Meekosha, H., 2011. Decolonizing disability: thinking and acting globally. Disability & Society, 26 (6), 667–682. Michalko, R., 2009. Coming face-to-face with suffering. In: T. Titchkosky and R. Michalko, eds. Rethinking normalcy: a disability studies reader. Toronto: Canadian Scholars Press, pp. 91–115. Mji, G., et al., 2011. An African way of networking around disability. Disability & Society, 26 (3), 365–368. Nixon, S.A., et al., 2014. Perceptions of HIV-related health services in Zambia for people with disabilities who are HIV-positive. Journal of the International AIDS Society, 17 (1), 18806. North, D.C., 1994. Economic performance through time. The American Economic Review, 84 (3), 359–368. Oliver, M., 1986. Social policy and disability: some theoretical issues. Disability, Handicap & Society, 1 (1), 5–17.

Towards an Afrocentric disability activism  297 Orenstein, M.A., 2008. Privatizing pensions: the transnational campaign for social security reform. Princeton, NJ: Princeton University Press. Ostrom, E., 2000. Collective action and the evolution of social norms. Journal of Economic Perspectives, 14 (3), 137–158. Pruce, K. and Hickey, S., 2017. The politics of promoting social protection in Zambia. ESID Working Paper No. 75. Manchester: Effective States and Inclusive Development. Rioux, M.H., 1996. Disability: the place of judgement in a world of fact. Journal of Intellectual Disability Research, 41 (2), 102–111. Shakespeare, T., 2013. Disability rights and wrongs revisited. Abingdon: Routledge. Soldatic, K. and Grech, S., 2014. Transnationalizing disability studies: rights, justice and impairment. Disability Studies Quarterly, 34 (2). Stone, D.A., 2002. Policy paradox: the art of political decision-making. New York, NY: Norton. Stone-MacDonald, A. and Butera, G.D., 2014. Cultural beliefs and attitudes about disability in East Africa. Review of Disability Studies: An International Journal, 8 (1). Available from: http://www.rdsjournal.org/index.php/journal/article/view/110 [Accessed 29 December 2018]. Tun, W., et al., 2016. Limited accessibility to HIV services for persons with disabilities living with HIV in Ghana, Uganda and Zambia. Journal of the International AIDS Society, 19 (5S4). United Nations (UN), 2006. United Nations Convention on the Rights of Persons with Disabilities and Optional Protocol. Available from: www.un.org/disabilities/ documents/convention/convoptprot-e.pdf [Accessed 29 December 2018]. Vanhala, L., 2010. Making rights a reality? Disability rights activists and legal mobilization. Cambridge: Cambridge University Press. Walker, A. and Townsend, P., 1981. Disability in Britain: a manifesto of rights. Oxford: Martin Robertson. World Health Organization (WHO), 2011. World report on disability. Geneva: WHO and The World Bank. Available from: http://www.who.int/disabilities/world_report/2011/ report.pdf [Accessed 29 December 2018]. Yoshida, K., Hanass-Hancock, J., Nixon, S. and Bond, V., 2014. Using intersectionality to explore experiences of disability and HIV among women and men in Zambia. Disability and Rehabilitation, 36 (25), 2161–2168.

20 Troubling activisms Canada and transnational disability activism Deborah Stienstra

In 2017, the Canadian government announced its new Feminist International Assistance Policy (FIAP). The policy argues that the best way for the Canadian government to address poverty around the world and respond to the needs of those who are most vulnerable is with a focus on gender equality and the empowerment of girls and women (Global Affairs Canada 2017). This bold approach, with its foundation in the potential of human rights and inclusion and aim to be transformative and activist, is a dramatic shift for Canadian foreign and development policies. It sets itself a high standard and will be closely analyzed and critiqued by many activists and academics. It also offers a significant opportunity for disability activists in Canada and around the world to reflect on how this policy and its implementation enable attention to disability rights. Drawing on recent academic literature on transnational activism, human rights, the politics of disability and impairment, and intersectionality, I argue that the FIAP brings important attention to gender equality and offers new policy and programme openings for disability activists. But the policy’s attention to disability, and intersectionality more generally, is weak. Its implementation may reinforce existing understandings of disability and neoliberal and charity practices of the international system rather than creating and furthering transnational relations of solidarity and support for disability rights. As a result, Canadian transnational disability activism requires work in multiple directions: monitoring human rights; challenging intersectional approaches to global development to be disability inclusive; and being reflexive about the limitations of these state-centred activist approaches. Using an analysis of historical and current transnational disability activism, I suggest that with Canada’s 2010 ratification of the Convention on the Rights of Persons with Disabilities (CRPD), Canadian activists have primarily focused their transnational activism on human rights and state activities. They have remained largely silent on areas of Canadian government involvement or complicity in creating impairments. Some of the most promising activism outside the CRPD process has been intersectional analysis and activism led largely by women with disabilities. To make these arguments, I situate the Canadian context within three theoretical discussions: What is transnational activism? What are disability justice and rights? And how is intersectionality used? Each of these theoretical discussions offers particular questions to consider in the Canadian disability activist case.

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What is transnational activism? Transnational activism is about how local, national and international non-­ governmental actors mobilize themselves and seek change in their areas of concern. One key question in this area is to what extent transnational activism relies on or implicates the relationships between governments and non-governmental actors. Traditional social movement scholars see social movements primarily in the context of governments and political institutions. One prominent scholar, Tarrow, argues that transnational activism needs to be understood in the context of internationalism, which is ‘a dense, triangular structure of relations among states, nonstate actors and international institutions, and the opportunities this produces for actors to engage in collective action at different levels of the system’ (Tarrow 2005, p. 25). Keck and Sikkink argue transnational advocacy networks have as their goal to influence policy outcomes and the terms and nature of the debate. These networks include ‘relevant actors working internationally on an issue, who are bound together by shared values, a common discourse, and dense exchanges of information and services’ (Keck and Sikkink 1998, p. 2). Using this, we might look at the context of the adoption of the CRPD where there are shared values and attempts to influence both domestic and international policy outcomes. In addition, we might consider the opportunities provided by the FIAP in the Canadian context. In both cases, non-governmental activism is defined within the context of state or governmental activities. While this approach helps us understand the actors in particular state-related contexts, it also ‘reflects an underlying acceptance of capitalist modernity, liberal democracy and individualism’ (Juris and Khasnabish 2013, p. 6). This critique leads Juris and Khasnabish (2013) to refer instead to the networked spaces of transnational encounters, while others discuss transnational activism, advocacy or solidarity work (Arenas Conejo 2011, Ilcan and Lacey 2013, Mohanty 2013, de Waal 2015). Soldatic and Grech (2014, n.p.) suggest that transnational disability activism includes ‘disability civil society actors transnationally organizing to position disability concerns for justice and rights within the centre of transnational negotiations’. This definition is useful because it identifies the location of activism as within civil society and the purpose of activism as disability justice and rights. It also echoes critiques and hopes for transnational disability activism from the global South (Chataika et al. 2015). In this article, I build on this definition and use transnational activism to refer to those transnational relationships of solidarity and support that exist among civil society actors in order to pursue disability justice and rights. From this and for the Canadian context, I ask how Canadians have engaged in transnational activism. To what extent is this activism focused in the state/international realm?

What are disability justice and rights? The focus of many accounts of transnational disability activism is on disability rights and the implementation and monitoring of the CRPD nationally and internationally (Connelly 2009, Mannan et al. 2012, Aldersey 2013, Rioux et al. 2015).

300  Deborah Stienstra In this context, what has become defined as disability justice are the disability rights set out in the CRPD. For many this is signalled by the scope of global engagement in drafting the CRPD, the large numbers of CRPD ratifications, and the monitoring movement to ensure civil society engagement in and views on state implementation of the rights (Meekosha and Soldatic 2011). This is important work, inserting and embedding disability rights into the practice and goals of human rights. Yet, as Soldatic (2013) argues, the CRPD has been built on an understanding of disability justice in the context of the modern territorial state. She suggests that this renders invisible claims against other states and international organizations as well as ‘disability injustices that are distinctly tied to northern state interventions through either development, aid, intervention or invasion’ (Soldatic 2013, p. 747). This global production of impairment (Meekosha and Soldatic 2011, Soldatic 2013, Soldatic and Grech 2014) reflects unequal relations of colonial power, trade practices, conflict and war as well as transnational capitalism. It is evident in the unrelenting drive for low-cost goods and clothing leading to unsafe factories in the global South (Mladenov 2016); the long-term implications of the use of Agent Orange in the Vietnam/USA conflicts (Ngo et al. 2013); and the colonial practices which justify resource extraction without consultation or benefits among Indigenous peoples in Canada (Stienstra 2015), among many others. Soldatic and Grech (2014; see also Soldatic 2013) argue for a double move to speak to the tensions of addressing both disability justice and rights: One is an affirmative politics of disability in the moral framing of disability justice claims within the modern territorial state, and the other, within the transformative politics of impairment which actively seeks to redress the injustices in the transnational sphere. (Soldatic and Grech 2014, n.p.) For our consideration of Canadian disability activism, this double move suggests two questions. How are Canadian activists involved in disability justice and rights in relation to the Canadian state and international organizations? How does Canadian disability activism engage in transnational struggles against the production of impairment?

How is intersectionality used? As I write this in 2018, the first woman with disabilities has been elected to sit on the committee for the Convention on the Elimination of All Forms of Discrimination against Women, and the committee on the CRPD just elected five women to be among its 18 members. The CRPD itself specifically addresses the situations of women and children, suggesting that an intersectional approach is part of disability rights. Yet I wonder whether and how intersectionality as an approach is used by Canadian disability activists as well as being a framework for policies, including FIAP. Initially developed by black feminist scholars (Crenshaw 1989, Cho et al. 2013, Collins and Bilge 2016), intersectionality is an analytic tool and social

Troubling activisms  301 movement practice that recognizes the privilege and oppression experienced as a result of diverse social locations as well as systemic inequalities. Intersectionality promotes an understanding of human beings as shaped by the interaction of different social locations (e.g., ‘race’/ethnicity, Indigeneity, gender, class, sexuality, geography, age, disability/ability …). These interactions occur within a context of connected systems and structures of power (e.g., laws, policies, state governments and other political and economic unions …). Through such processes, interdependent forms of privilege and oppression shaped by colonialism, imperialism, racism, homophobia, ableism and patriarchy [and others] are created. (Hankivsky 2014a, p. 2) In recognizing and identifying the complex experiences of people, intersectionality offers policy and practice directions for addressing these intricacies. The complexities illustrated through intersectionality also challenge its promise. Walby et al. (2012) identify several different ways that intersectionality may be evident in policy and practice. An asymmetric approach argues that one inequality, such as gender or disability, is dominant and although it recognizes others, they are secondary. An approach that recognizes parallel forms of inequality suggests multiple forms of inequality exist but addresses them through separate laws and practices. An additive approach suggests that groups that have multiple disadvantages are doubly or triply disadvantaged, and that disadvantage is cumulative (Hancock 2007, Bowleg 2008). For some, these multiple forms of inequality may be mutually constituting, that is being black and a woman constitutes a new situation of black woman. Walby et al. (2012) argue that the most effective way to understand these different systems of inequality is through mutual shaping. Mutual shaping suggests that although separate systems of inequality exist, they affect and shape each other. Providing a rich analysis with complex policy responses requires that we ask what power relations or inequalities are at work and examine ways in which these diverse relations are mutually constituted or mutually shaped, and their various effects. This means, as Hankivsky (2014b, p. 260) suggests, an analysis that leaves open, as a matter of investigation, the content and implications of co-constituting relationships between power structures and social locations. Such an analytic method can thus expose less visible or completely overlooked social locations … and in turn what degrees of privilege or penalty are experienced in relation to existing policies. Intersectionality inextricably links analysis and practice, including social movement practices, and thus has significant implications for transnational activism. Part of intersectionality is to identify differences as a result of diverse identities and social locations, but it also has a political intent of seeking to change the inequalities that result from differences. In their case study of Asian Immigrant Women Advocates, Chun et al. (2013, p. 920) suggest a threefold deployment of

302  Deborah Stienstra intersectionality in social movements: as a framework for analyzing interlocking areas; ‘as a reflexive approach for linking social movement theory and practice; and as a guiding structure for promoting new identities and new forms of democratic activity’. But the promise of intersectional analysis can be compromised in its practice, including through transnational activism. Mohanty (2013) argues that neoliberalism depoliticizes differences, rendering inequalities invisible with its call for diversity which, in effect, flattens differences and reduces critiques of power. She points to an analysis of gender and development that depoliticizes feminist theory as a ‘basis for rhetorical commitments to gender justice that actively erase corresponding commitments to social transformation’ (Mohanty 2013, p. 972). Patil (2013) suggests that applications of intersectionality are shaped by colonization because they fail to address the specificity of the local. ‘We need to think of the multiple processes, at different scales, that contribute to the emergence of particular local dynamics having to do with gender’ (Patil 2013, p. 863). These critiques echo back to the need for a transformational politics of disability justice. Drawing on the possibilities and critiques of intersectionality, I ask how and what type of intersectionality shapes Canadian transnational disability activism and the FIAP? How are these intersectional commitments evident in both policy and practice? Using the questions I raised in each of these theoretical discussions of transnational activism, disability justice and rights, and intersectionality, I offer a critical reading of Canadian historical and current transnational disability activism and the opportunities of the current Canadian foreign policy environment with FIAP.

Historical context Canada has a long history of disabled people’s activism across borders, and especially within the self-representational disability movement. Disabled Peoples’ International (DPI) was born in 1981 and sustained in Canada for many years, thanks in part to the leadership of Henry Enns and significant funding from the Canadian International Development Agency (CIDA)1 (Driedger 1989, Enns and Neufeldt 2003). The Council of Canadians with Disabilities (CCD), then called COPOH or the Coalition of Provincial Organizations of the Handicapped, Canada’s peak disabled people’s organization and Canada’s DPI member, was established in 1976. CCD had an early focus on international development work, particularly on self-representation at the international level and solidarity work with disabled people’s organizations (DPOs) in developing countries, especially in the Caribbean (Driedger et al. 1996, D’Aubin 2003). Their approach was to twin members in Canada and the global South in order to promote solidarity and self-help, and illustrated the two-way benefits of this activism. Derrick Palmer, of the Combined Disability Association (CDA) in Kingston, Jamaica, told of one incident where Canadians were both the oppressors and the advocates. A Bank of Commerce Branch in Kingston was inaccessible

Troubling activisms  303 to people in wheelchairs. CDA tried to get the branch to solve this problem but met with indifference. CDA then wrote a report complete with photos to Wayne Westfall, a member of the K2 Linkage, between Kingston, Ontario and Kingston, Jamaica. Wayne presented the report to the Bank of Commerce in Ontario. Within months, Derrick said, the Jamaica branch was made accessible. Advocacy of this nature could also go both ways. (D’Aubin 2003, p. 125) This early transnational work illustrates attention to the local context, recognizing the importance of working close to home in the Caribbean, and in ways that supported the work of disabled people in both locations. It also recognized that Canadians could be complicit in inequalities related to disability, and CCD used the privilege of being Canadian to get a Canadian bank in Jamaica to address its inaccessibility. This is transnational activism at work for disability justice. The international development work of CCD was often incompatible with the directions of its funder. Indeed, while disability activism was supported through the CIDA partnership and international non-governmental organization programmes, this support at first came through the initiatives of the Mennonite Central Committee and Henry Enns, who had been part of their staff (Driedger 1989, Enns and Neufeldt 2003). The practice of supporting disability justice and rights was not evident in Canada’s development policy. CIDA has no formal disability policy despite having a long-standing gender equality policy, adopted in 1999. This gender equality policy had what some called an intersectional approach which included disability, but was in effect a gender-first approach that reflected limited and asymmetrical intersectionality (Stienstra 2017, p. 120). In the late 1990s and in the context of neoliberal policies, CIDA exercised greater control over development assistance funding and shifted away from supporting nongovernmental organizations unless their proposals matched government priorities (Brown 2012). In the context of these significant changes, CIDA support for disability activism was also challenged. Steve Estey, an international disability rights leader, notes how the beginning of his tenure as the international development officer at CCD coincided with the ending of what we call the golden era of Canada’s international disability attention. Within 6 months of my taking the job at CCD [1998], CIDA announced they were going to do a program review of CCD’s international development committee. And for those of you who are familiar with these things, program review is very often a bureaucratic euphemism for you’re over or it’s the end. And I was young and naive in those days. I believed that a program review was a real opportunity. So I engaged in it with enthusiasm. Which one might even say I did my best to convince the program reviewers that we were doing hugely important things. And I had some success because our program review talked about the fact that yes, CCD and organizations like it were doing hugely important things. But unfortunately, we were doing hugely important things which didn’t conform to the mandate of the

304  Deborah Stienstra Canadian International Development Agency because there was no policy on disability and development. And the program reviewers hastened to point out that since there was no policy framework, there was no way that we could really guarantee the sustainability of the programs that we were trying to deliver in countries X, Y and Z. And we were therefore guilty, guilty I say, of increasing expectations on the part of disabled peoples’ organizations in the countries that we were working with. That the Government of Canada and the people of Canada were entering into a long-term relationship with them, when in fact we couldn’t guarantee that. So rather than perpetuate that travesty of creating expectations that we would be unable to sustain, the program reviewers recommended that we just shut down our shop right then and there and put an end to those nasty high expectations that people with disabilities had in the countries that we were working with. (Stienstra and Estey 2016, pp. 384–385) Despite the climate of cutbacks, and partly due to the personal connections of Henry Enns, in 1995 a new community-based, university-affiliated organization, the Canadian Centre for Disability Studies (CCDS), was created with a mandate, in part, to undertake international development work. Through its projects with social workers, psychiatrists and educators in Russia and the Ukraine (Neufeldt and Egers 2003), and research with DPOs in Uganda and Ghana, CCDS has been seen by many, including within Global Affairs Canada, as a key voice in developing transnational disability relationships. CCDS was also able to leverage early research with international organizations, including the World Bank, through a baseline assessment of the World Bank’s operations around disability (Stienstra et al. 2002, Stienstra and Estey 2016). With the lack of commitment to disability policy in Canada’s foreign and development policy and Henry Enns’s death in 2002, CCDS (renamed Eviance in 2018) has been challenged in maintaining its international development work. In addition to CCDS, Neufeldt and Egers (2003) note that other universitybased centres pursued transnational disability activism, although most did not work directly with DPOs. The Roeher Institute (now known as IRIS), based at the Canadian Association for Community Living (CACL) and York University, had worked with parent groups in the Caribbean since the 1970s. Queen’s University’s International Centre for the Advancement of Community Based Rehabilitation since 1991 has worked to promote community-based rehabilitation programmes in over 15 countries. Their most recent Canadian government-funded project on access to health care for children and youth with disabilities in Bangladesh focuses on training service providers, although within the rehabilitation hospital they also work with DPOs (Global Affairs Canada 2018a, S. Estey, personal communication, 27 August 2018). Some of the most successful recipients of Canadian government project funding have been humanitarian organizations, like Handicap International and Christian Blind Mission. Their projects primarily undertake rehabilitation and prevention (Stienstra 2017) by bringing in Canadian wheelchairs, prosthetics

Troubling activisms  305 and service providers. Until very recently, they have not engaged with Canadian or local DPOs. These organizations build on a notion of ‘good imperialism’ (Jarman 2005) where addressing disability in the global South requires repairing or replacing the ‘broken’ parts. As others suggest (Wehbi et al. 2010, Nguyen 2018), this work builds on global Northern ideals of ‘healthy’ in order to help the ‘suffering’ bodies. Until the early 2000s, Canadian DPOs and others engaged in state-funded transnational activism to support transnational DPO networks, strengthen DPOs around the world, implement the social model of disability among educators and social workers in Eastern Europe, and support research by and with people with disabilities in various countries. Most of this state-funded work came to an end with the changes to CIDA and shifts in Canadian policies (Stienstra 2017). Some DPOs worked through their international body to undertake transnational activism. For example, the Canadian Association of the Deaf works closely with the International Federation of the Deaf; CACL, while not a DPO but a family disability organization, works in close collaboration with Inclusion International.

Disability rights and Canadian transnational disability activism Transnational disability activism in Canada shifted significantly with the development of the CRPD from state-funded DPO engagement to participation in monitoring the CRPD and pursuing disability rights. After some initial hesitation, Canadian DPOs embraced a human rights approach to disability and argued for a human rights-based development assistance policy. After years of participating in the negotiations around the text of the CRPD, Steve Estey brought the commitments made in Article 32 on inclusive development assistance back to the president of CIDA, saying: ‘We went to the UN, we played by the rules. We crafted a convention. There’s Article 32 of the Convention. We’re back at your door at CIDA to say, okay, you’ve ratified this Convention, you now have an obligation under international law to consider people with disabilities when you’re doing your bilateral development assistance.’ The CIDA president said, ‘Yeah, that seems like something that we should consider.’ We had a couple of brown bag lunches at CIDA. Then they shut CIDA down and we haven’t been able to find anybody to talk to about it since. (Stienstra and Estey 2016, p. 387) Other Canadians, notably Marcia Rioux, professor of Critical Disability Studies at York University, also recognized the importance of monitoring the CRPD as part of transnational activism. Through her co-leadership of Disability Rights Promotion International (DRPI), with Bengt Lindqvist, DRPI created participatory monitoring tools for DPOs to use with the CRPD (Rioux et al. 2015). Rioux was also able to leverage her academic work to support the development of the Canadian DPRI monitoring site through a funded community–university

306  Deborah Stienstra research alliance. This innovative collaboration between academic researchers and DPOs is also evident in a recent York University project to address unemployment of people with disabilities in India, Nepal and Bangladesh (Global Affairs Canada 2018b). As part of their transnational activism, Canadian DPOs regularly participate in the annual meeting of states party to the CRPD as well as the civil society forum that precedes it (CACL 2017a). Some do so through their international DPO, while some Canadian organizations, such as CCDS and CCD, also have consultative status on their own. The Canadian government’s first report on implementing the CRPD offered an opportunity for many Canadian DPOs to participate in the transnational disability rights process. A parallel non-governmental report responding to the list of issues identified in Canada’s report by the UN Committee was submitted by a coalition of 16 DPOs and allies (Canadian Civil Society Parallel Report Group 2017). Other more focused reports addressed housing and living independently in the community (Alzheimer Society et al. 2017), women with disabilities (FAFIA and DAWN 2017) and mad people’s experiences (Mad Canada Shadow Report Group 2017). Travelling to Geneva to participate in the reporting process was, for some, an illustration of their presence in a larger movement (CACL 2017b). In addition to DPOs, some broader civil society organizations, like Action Canada for Sexual Health & Rights (2017), submitted a parallel report on sexual and reproductive health and sent a person to Geneva who worked closely with the DPOs there. These linkages illustrate advancing disability rights within the broader human rights movement. In 2017, a fledgling collaborative network was created to facilitate transnational disability activism in Canada. CANDID, or the Canadian+ Network for Disability-Inclusive Development, is hosted by CCDS, with DisAbled Women’s Network of Canada (DAWN), Steve Estey and several academics2 as part of its steering committee. CANDID’s intent is to facilitate policy-engaged activism and research within Canada and with international partners to support the implementation of disability rights around the world and the development of more inclusive societies. These initiatives illustrate that Canadian transnational disability activism has focused its efforts primarily around the implementation and monitoring of the CRPD in Canada, and also reflects where the Canadian government has provided financial support for DPO involvement. Activists have also used the annual conference on the CRPD and the Convention of States Parties to network with activists from other parts of the world and policymakers from international and national organizations. Despite the desire to work more transnationally, activists have found little support for their work outside the CRPD process. For example, CANDID has strong relationships within Global Affairs Canada, which hosted an internal roundtable around disability-inclusive development in 2017. Yet CANDID has been unsuccessful in getting funding to support its hybrid DPO–academic model of activism. With the changes in Canadian development assistance policy through the

Troubling activisms  307 FIAP, the Canadian government asserts its human rights foundation. In addition, it makes a commitment to funding gender equality so that by 2021–2022, ‘no less than 95 percent of Canada’s bilateral international development assistance initiatives will target or integrate gender equality and the empowerment of women and girls’ (Global Affairs Canada 2017, p. 9). The rollout of FIAP’s implementation suggests that funds are prioritized for those already involved in development assistance work rather than supporting new voices in this area. The stated goal of FIAP is: ‘To better amplify women’s voices around the world, Canada will collaborate with partners to pilot, design and champion new and innovative ways of working with local women’s organizations that advance women’s rights’ (Global Affairs Canada 2017, p. 9). The 2018 Partnerships for Her Voice, Her Choice initiative focused on sexual and reproductive health, yet it included a key evaluation criterion of previous management of official development assistance projects, which eliminates applications from many DPOs, such as DAWN Canada.

Disability justice and Canadian transnational disability activism Since the turn of the millennium, Canadian disability activism has been primarily focused on disability rights and the implementation and monitoring of the CRPD. Only a few examples illustrate Canadian transnational disability activism related to disability justice and the global production of impairment. One important area of Canadian disability activism illustrating disability justice has been in response to landmines. Transnational activism on landmines by Canadians built on the policy work done in the late 1990s around the Landmine Ban. The Ottawa Process in 1996 and 1997 led to Canada’s signing and ratification of the Convention on Landmines. The government’s approach to this treaty was to put a human face on landmines, focusing on the impact of landmines on survivors. This commitment led to a five-year C$100 million Canadian Landmine fund, which provided assistance to landmine victims or survivors, primarily through rehabilitation. This rehabilitation focus has been the primary Canadian response to landmine survivors from the beginning (Stienstra 2003, 2017). In the most recently funded disability-identified project, which ended in 2016, almost $3 million was used to provide support for survivors in Colombia through the rehabilitation process (Global Affairs Canada 2018c). Early on, Canadian DPOs recognized the disability justice approach to landmines. The Manitoba League of Persons with Disabilities (one provincial affiliate of CCD) argued: As people with disabilities, we feel the urgent need to call for a stop to the senseless disabling of innocent victims, and equally important, the provision of resources to help those disabled to be fully rehabilitated into their societies. (MLPD 1994) CCD has continued to work through the national anti-mining organization Mines Action Canada and is a member of the International Campaign to Ban Landmines.

308  Deborah Stienstra Canadian disability activists have not, however, taken on many disability justice issues that stem from Canadian foreign and development policies. Given their fragile and largely unfunded transnational disability activism, this silence is not surprising. One example illustrates this. The Canadian government explicitly (re) commercialized its aid in 2011 with a commitment to reorient its development assistance to the interests of private Canadian companies, especially those in the resource extraction sector (Brown 2016, Goyette 2016). Some non-governmental organizations worked in partnership with the mining companies, while others challenged the policies and those working with them (Brown 2016, p. 282). Canadian DPOs were silent on this shift and the place of Canadian policy and resource extraction policies abroad. Using an intersectionality analysis, Manning (2016) illustrates the complex relationships between the Canadian government, Barrick Gold and the Canadian Pension Plan, which invests in Barrick, and the particular power relations at work in Papua New Guinea, which are evident in the sexual violence against women associated with the mine. She argues that Canada benefits from these mining relationships at the expense of the women who were sexually assaulted and those Porgerans who were dispossessed of their lands: ‘some profit returns directly to the Canadian government, and indirectly to every Canadian, as the Canada Pension Plan (CPP) owns a CA$330 million share in Barrick’ (Manning 2016, p. 584). While Manning does not include disability in her intersectional analysis, groups like DAWN Canada remind us regularly of the disabling consequences of violence against women. Violence against women can cause impairments and women with disabilities are more likely to experience violent victimization (Brayton 2017, Cotter 2018). Brayton pursues transnational disability activism as she engages across the United States border with government officials and activism to bring the disability dimension to discussions of human trafficking. Her innovative activism comes clearly from her intersectional analysis and practice – something she has contributed to and received from her transnational activism.

Intersectionality and Canadian transnational disability activism Canadian women’s disability activism has often been a less visible part of Canadian disability activism. Women have shared their experiences of being a woman with disabilities transnationally since the disability movement began in Canada (Feika 1996, Meister 2003). But they have also worked strategically to raise the profile of women with disabilities within the transnational women’s movement and brought a disabled women’s perspective to Canadian women’s transnational initiatives. Women with disabilities have been an essential part of increasing the intersectional awareness within the women’s movement. Several themes in women-to-women disability activism echo across the decades. For example, Irene Feika talks about her work with women in Jamaica talking about both sexuality and women’s leadership (1996), recognizing what the

Troubling activisms  309 women in Canada and Jamaica had in common but also their differences based in cultures and societies. I also learned that what works in one society may not work in another. This is not to say we should not share concepts or programmes, but we should encourage and accept that numerous adaptations may be needed for them to work in another culture. (Feika 1996, p. 46) DAWN Canada recognized the importance of women-to-women transnational disability activism as it joined the International Network of Women with Disabilities, started at a Global Summit on Women with Disabilities in Quebec in 2008 (Frohmader and Meekosha 2012). DAWN Canada continues to create and sustain transnational relationships with organizations of women with disabilities, including through sharing its unique French resource collection. Canadian women’s transnational disability activism has been nurtured within some parts of the Canadian women’s movement and was ignited by the Fourth World Women’s Conference in Beijing in 1995. Sponsored (i.e. funded) participants from Canada were chosen through the Canadian Beijing Facilitating Committee and at least five of the 40 women chosen were women with disabilities (Boldt 1996). While women with disabilities experienced significant access barriers in the meetings in Beijing, their presence as part of a Canadian NGO delegation brought them greater visibility in the women’s movement. The coordinating organization of the Canadian Beijing NGO presence was the Canadian Research Institute for the Advancement of Women (CRIAW). As an organization, it has led the way in Canada on developing feminist intersectional analysis, especially from a community research perspective. Its commitment to intersectionality is reflected in its board structure and organizational policies. For example, its board must have representation from women with disabilities, women of colour, Indigenous women and francophone women, among others. This has meant that CRIAW has developed research related to the experiences of women with disabilities, and DAWN Canada has been a crucial partner for CRIAW in several of its large projects, including the Feminist Northern Network on resource extraction in Canada’s north (Stienstra et al. 2018). A similar intersectional practice was developed through the 2011 Women’s Worlds event organized by Lise Martin, the former executive director of CRIAW. Women’s Worlds developed a formal partnership with DAWN Canada to ensure that the event would be as accessible as possible and that women with disabilities would be fully included (Women’s Worlds 2011). As a result, the perspectives of women with disabilities were well developed and included in all the work of the conference. DAWN Canada aims to use this model at Women Deliver 2019 to be hosted by the Canadian government in Vancouver. While some elements of the women’s movement have included disability as part of their intersectional approach, the disability movement in Canada and

310  Deborah Stienstra Canadian governments have paid significantly less attention to intersectional policy and practices. The Concluding Observations to Canada’s first report on the CRPD noted specific intersectional gaps in Canada’s policies, especially in the context of women and girls with disabilities, Indigenous people with disabilities and migrants with disabilities. In response, in 2017 the government of Canada funded two initiatives: one around intersectional forms of discrimination with a team headed by CCDS (Buettgen et al. 2018) and the other specifically on women and girls with disabilities headed by DAWN Canada. These will provide significant momentum to addressing intersectionality in disability policy and the disability movement in Canada.

Conclusions Two significant developments in the last 10 years have changed the landscape for Canadian transnational disability activism: the CRPD as a transnational human rights framework and the FIAP as a normative Canadian foreign and development policy framework. As evident around the world, the CRPD has mobilized disability activists in Canada in new ways to claim their rights, monitor their implementation, and act collectively to use these rights for change in Canada and as part of a broader transnational movement. This has been significant for leveraging change in Canada, especially in domestic policies. The CRPD has been one among many human rights obligations underpinning recent changes in Canadian foreign and development policies. Despite the CRPD, the introduction and implementation of the FIAP suggests that the government is promoting gender equality as its primary focus and that its intersectional analysis and attention is muted. At a 2018 public meeting on the FIAP, I asked the minister responsible about a focus on women with disabilities. She replied that, yes, people with disabilities are among the most vulnerable in developing countries and they felt that a focus on gender equality would ensure their inclusion. At the 2018 Global Disability Summit, the minister made additional commitments to address disability rights and inclusion as part of Canadian development assistance policies and FIAP (Global Affairs Canada 2018d, Global Disability Summit 2018). This gender-first approach to intersectionality suggests that Canadian disability activists may want to build on the strengths of the disabled women’s movement in Canada for transnational disability activism in addition to continuing activism related to the CRPD. But engaging in activism for disability justice will require activists to go beyond the CRPD and reflect on early Canadian experiences with transnational activism, which recognized Canadian roles in both sustaining and fighting against disability injustices.

Acknowledgements My thanks to Steve Estey for his insightful comments on a draft of this chapter.

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Notes 1 CIDA no longer exists and its functions have been incorporated into what is now Global Affairs Canada. 2 David Black from Dalhousie University, Stephen Baranyi from University of Ottawa and Deborah Stienstra from University of Guelph.

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21 When academia meets activism The place of research in struggles for disability rights Paula Campos Pinto

Introduction On a warm and humid evening in mid-October 2008, exhausted from a 16-hour flight, I landed in Manila. With Marcia Rioux, Disability Rights Promotion International (DRPI) co-director, I had come to co-facilitate a week-long training seminar on disability rights monitoring. Being my first time in a DRPI training, I felt unsure about what to expect and what was expected from me. ‘Welcome, Kumusta kayo (how are you)?’ were the first words we heard as we left the plane while our hands were firmly shaken and flower collars were put around our necks by the members of KAMPI, the Filipino disability organization, who came to greet us at the airport. My worries vanished. For the next eight days, cramped in a hot room without air conditioning and poor ventilation, I learned more about the meaning of human rights than throughout all my years of graduate school. This seminar, and the many others that I co-facilitated over the following years with people with disabilities, in very different countries of the globe, was a transformative experience, and not just for participants. By listening to their stories, I gained new insights about the linkages between theory, policy and practice, and the meaning of emancipatory disability research. To this date, this work shapes my understanding of the role and place of research in supporting struggles for disability rights and a fully inclusive society. Drawing from a decade-long experience as an academic working in disability rights monitoring with people with disabilities in countries around the world, in this chapter I develop a personal reflection on the tensions and possibilities that arise from engaging in emancipatory disability research. The chapter is divided into two main sections. First, I provide a brief outline of the nature, purpose and outcomes of both research and activism. Using Bourdieu’s notion of field, I look at how the academic and activist fields are structured by different rules and modes of symbolic and material recognition that can sometimes come into conflict, particularly in current times of neoliberalism and austerity. Then, I turn to my work on disability rights monitoring to illustrate some of the tensions that arise when attempting to develop emancipatory (Barnes 2001) and activist research (Hale 2001) but also the possibilities that this approach has opened up for disability rights struggles in Portugal.

316  Paula Campos Pinto I argue that emancipatory research that exposes the discrimination that disabled people experience in their everyday lives is today ever more needed to support local and global struggles for disability rights and a fully inclusive society. But first, let me provide a bit of theoretical background.

Bourdieu’s theory of field To develop my argument, I will use Bourdieu’s concept of field (Bourdieu 1976), which is central to Bourdieu’s theory. In Bourdieu’s conceptualization, the field is a relatively autonomous microcosm or system that exists within the social macrocosm. Each microcosm (and he identifies several, from the political to the religious, the medical, the legal, the scientific and even the football field) is ruled by specific norms and has a specific goal. Hence, the politics that are inherent to each field are irrelevant and often obscure to another field: for example, a banker views intellectual disputes as meaningless and futile, whereas for an artist, the concerns of a banker are totally strange and most likely perceived as petty. In other words, each field is dedicated to a specific type of activity and works according to a specific set of rules and symbols. The emergence and establishment of a multitude of social spaces, each with its specific legitimacy and functioning, is part of the modernization process of contemporary societies (Hilgers and Mangez 2015, p. 2). Given that every field has a relative autonomy, the process through which borders are established and maintained is another important contribution of Bourdieu’s theory of field. The field is always ‘a space of struggles’ (Bourdieu 1976; my translation) – for example, in the artistic field, the struggle to define what is considered art or who is recognized as an artist and who is not. In addition, as a relatively autonomous domain of activity, each field has its own logic which defines how its members think and act. These norms and symbols are internalized by the actors and groups engaged in the field as rules of the game. The field is thus better described as a relational space, in which actors and groups occupy different positions. Hence, it is constantly permeated by conflict over the control of that field. Within each field we will find elites and subordinates, traditional agents and newcomers. Those who possess more capital of the kind that is valued in that field will tend to adopt conservative positions, while subversive strategies are more likely to come from those of competing groups, who own less conventional capital. How does this theory apply to the scientific community? With its unwearying aspiration of truth-finding, isn’t science immune to these kinds of politics? Well, in an article entirely dedicated to the examination of the social field of science, Bourdieu (1976, p. 89) starts by claiming: The ‘pure’ universe of science, the ‘purest’ one, is a social field like any other, with its relations of power and its monopolies, its struggles and its strategies, its interests and profit, but where all these invariants take specific forms. (My translation; my emphasis)

When academia meets activism  317 He then goes on to debunk the specific structure of the field of science. The scientific field, he claims, is the space of a competition for the monopoly of scientific authority or scientific competence. Scientific authority is, indeed, the kind of social capital that is valued in this particular field. Yet rather than just reflecting the degree of technical competence, scientific authority relies largely on a ‘social fiction’ – that of researchers’ school degrees and scientific awards, which in themselves hold the power to modify the social perceptions about the level of competence and knowledge of those who possess them. In consequence, not only do researchers from the so-called hard sciences (e.g. biology, chemistry, mathematics or physics) get ranked higher than those who belong to the so-called soft sciences (in which sociology is typically included) but individual researchers also are placed in very different power positions, whether they are PhD students, scholars from an obscure university of a southern European country or professors from a prestigious UK university. In such a hostile environment, Bourdieu continues, researchers’ practices are oriented towards ‘the acquisition of scientific authority’ or, in other words, they strategically try to achieve the highest possible prestige, recognition and reputation. But the chances to achieve greater authority are dependent on a number of factors. First, they are related to the object of study – and hence the tendency of researchers to focus on topics considered ‘the most important ones’, since these are the ones that will grant greater ‘symbolic recognition’. Disability is hardly viewed as such a hot topic as for most people it remains a very marginal issue. Second, the struggle for scientific authority relies on the scrutiny of peers – as Bourdieu puts it (1976, p. 91), due to the great autonomy of the field of science, only other researchers are deemed able to symbolically assess scientific work and determine its merit, and this despite the fact that such evaluators are engaged in the same game; they are players in it too. In the absence of an instance of legitimacy, these researchers–evaluators (the dominants) will thus tend to impose as criteria what they are and what they do. Their degree of legitimacy is equivalent to their power. In turn, researchers who look instead for external approval, that lies outside the field of science (for example, looking for accountability in the disability community), are totally discredited. The dominant players of the field of science will make all efforts to perpetuate the scientific order they identify with. This order is not just made of scientific resources such as books, theories and methodologies. It also involves the set of institutions that ensure the production and circulation of knowledge (that is, universities), the institutions that grant awards and funding, and the mechanisms of knowledge dissemination, in particular the scientific journals which, through peer-review processes conducted in accordance with dominant criteria, consecrate the products that follow established principles while rejecting or censoring others that differ from that norm, thus encouraging newcomers to adopt strategies of succession. How is scientific legitimacy ensured? What are the social conditions that grant scientificity and value to researchers’ products? According to Bourdieu, the positivist paradigm, with its praise of the scientific method, ensures that science will

318  Paula Campos Pinto always have the power to find the answers to the questions it raises, provided that such questions are scientifically framed and that rigorous and objective criteria are put in place and strictly followed. This makes it possible to generate consensus around the solutions thus found. In positivist terms, the scientific method requires distance between the researcher and their object of study, and imposes criteria of neutrality. In doing so, it helps to create the rhetoric of scientificity, through which the dominant community produces a belief in the scientific value of its products and the scientific authority of its members. Strategies of closure are also used to mark the boundaries of the field, ensuring that a clear line is drawn between what is considered a scientific problem and debate, and what is viewed as just some form of mundane, everyday life discussion. At this point, it should be noted that under current times of austerity and neoliberalization, this logic is being reinforced through the new tyranny of measurement that is transforming university life – impact factors, indexes, league tables and rankings are increasingly imposed on institutions and researchers as ways to assert their ‘scientific competence’. These new strategies of assessment have important effects on the kinds of research and teaching that are valued and get done, while ‘re-modulat[ing] the ways in which we relate to one another as neoliberal subjects, individual, responsible, striving, competitive, enterprising’ (Ball 2015, p. 258). And of course, once again, some disciplines are assigned greater value than others, some research attracts greater attention and funding than others, and so on. Disability Studies is clearly at the bottom of the list in many parts of the world, including my own country. Back to Bourdieu. In the macrocosm of social life, fields are also spaces of opposition. Opposed to the rules that define the science field, activism I would argue, while not addressed as a specific field by Bourdieu, could also be defined as one – albeit with a very distinctive logic. Instead of being objective and neutral, activism engages with everyday life struggles; instead of granting primacy to just one, it uses a plurality of methods to go beyond what is conventional or routine. Whether through letter writing, door-to-door canvassing, public meetings or street demonstrations, to mention a few methods, activism presupposes embracing a cause, taking sides, being passionate. Bridging the two worlds – of science and of activism – to address disability issues seems like an impossible mission. And yet this is just what the founding fathers of Disability Studies have always claimed. In the 1970s, when disability became politicized through the action of disabled people in North America and the UK, and Mike Oliver coined the term ‘social model’ to describe the shift away from an emphasis on individual impairments as the cause of disability to the way in which physical, cultural and social environments exclude or disadvantage people labelled disabled, Disability Studies was born. Reflecting back on the extraordinary development of global Disability Studies over those 20 years, it was Mike Oliver again and Len Barton who reminded us that ‘disabled people have played an absolutely central role in the development of disability studies providing the main ideas and shaping

When academia meets activism  319 the academic agenda’ (Oliver and Barton 2000, p. 7). While inextricably linking the two –research and activism – the authors did not go without recognizing the increasing difficulty in maintaining those links, and raised concerns about the ‘abuse, exploitation and colonisation’ (Oliver and Barton 2000, p. 7) of disabled people by disability scholars, something that they claimed was growing already at the time. Therefore, they warned, as well as the extent to which it will involve disabled people in curricula planning and delivery, the future quality and effectiveness of Disability Studies will be fundamentally contingent upon the extent to which [our teaching] critically engage[s] with the writings, poetry and songs of disabled scholars, writers and activists from within the disability movement. (Oliver and Barton 2000, p. 9) Importantly too, they stressed, our research has to continue to be critical and emancipatory. What does that imply? How can one produce knowledge that is critical and emancipatory, rather than objective and neutral, and still call it science? What would Bourdieu think of that? Well, in my earlier description of Bourdieu’s work, I intentionally left out his discussion about social change. Let me consider it now. To the extent that Bourdieu assumes that any field is ‘a space of struggles’, he recognizes that the continuing struggles that animate a field work to modify the field’s internal power balances and to impose a somehow different definition of ‘legitimate recognition’ (Hilgers and Mangez 2015, p. 6). The dynamics of change is also stimulated by the ‘structural affinities’ that may develop between individuals occupying ‘homologous positions’ in different fields of the social structure. By bringing together researchers and leaders of the disability movement, that is precisely the kind of social transformation that the critical, emancipatory approach of Disability Studies aims to bring about.

The critical, emancipatory paradigm in Disability Studies The critical research paradigm relies on three basic assumptions: 1) reality is made of social, political and economic structures that are historically situated, and which researchers try to understand and change; 2) all knowledge is mediated by values, as all that can be known is ‘intertwined in the interaction between the researchers and their objects of study’; and, therefore, 3) the research process always requires a dialogical and dialectical relationship between the researcher and the research subjects, in order to expose their ‘subordinate knowledge’, which in turn forms the basis of a social critique and transformational approach (Cuba and Lincoln 2004, p. 17). In other words, the critical theory paradigm guides politically engaged research, which aims to promote social justice for the most disadvantaged groups, including people with disabilities (Barnes et al. 1999, p. 215).

320  Paula Campos Pinto The emancipatory approach is clearly inscribed in the critical theory paradigm (Oliver 1992). Barnes (2001) described emancipatory disability research as a dynamic process which aims at putting in place seven fundamental principles: •• •• •• •• •• •• ••

Control: that is, persons with disabilities must actively participate in all stages of the research process; Accountability: research processes and practices must be open and explained to participants and disability organizations, and research outcomes should be shared with them to support their advocacy work; Practical outcomes: emancipatory research must produce knowledge that is useful for the disability movement, for the inclusion and human rights of persons with disabilities; The social model of disability: emancipatory research must be based on a conceptualization that brings forward the social, cultural and economic barriers and mechanisms which produce the exclusion of people with disabilities; The problem of objectivity and the need for scientific rigour: researchers must be clear about their epistemological and ontological position and the choice of methods must be logical, rigorous and open to scientific scrutiny; The choice of methods: encompasses all range of methods, quantitative or qualitative, in accordance to the needs of the study; The place of experience: the discussion of the narratives, experiences and life stories of disabled people has to be developed ‘within the environmental and cultural context in order to highlight the disabling consequences of a society that is increasingly organised around the needs of a mythical affluent and non-disabled majority’ (Barnes 2001, p. 13).

This discussion is not exclusive to the Disability Studies discipline. In other areas of knowledge, similar issues have been raised. For instance, in the context of the Global Security and Cooperation (GSC) programme, Hale (2001, p. 13) makes the case for activist research when he writes: activist research: a) helps us better to understand the root causes of inequality, oppression, violence and related conditions of human suffering; b) is carried out, at each phase from conception through dissemination, in direct cooperation with an organized collective of people who themselves are subject to these conditions; c) is used, together with the people in question, to formulate strategies for transforming these conditions and to achieve the power necessary to make these strategies effective. Thinking through the activist/researcher problematic, within the scope of radical geography and the climate justice movement, Russell (2014) goes even further when he discusses the commitments of ‘militant research’, claiming that for researchers who adopt this orientation, the university ceases to be the ‘referent’. As he concludes, such an orientation leads us ‘to ask not what the university is but what we want it to do’ (Russell 2014, p. 244).

When academia meets activism  321 Despite obvious nuances among them, what is common to all these scholars is their critical engagement with the everyday struggles of subordinate and oppressed groups and a rejection of the positivist stance and its illusionary contention that knowledge can and must be neutral. That does not mean that critical researchers neglect scientific rigour. On the contrary, they employ an array of methodologies, recognizing that each of them has its own strengths and limitations; therefore, as conventional researchers, their choice of methods is driven by the nature of the research questions at stake. However, critical researchers let their research questions be guided by the concerns, the interests and needs of the groups they are working with and, recognizing that knowledge is always implicated in the relations of power of the socio-political context in which it is produced, they ‘endorse the contrasting task of making [their] politics explicit and up-front, reflecting honestly and systematically on how they have shaped [an] understanding of the problem at hand, and putting them to the service of [their] analytical endeavour’ (Hale 2001, p. 14). Moreover, their research processes and outcomes, rather than being placed under the scrutiny of only their peers, are accountable to the communities they are working with. In other words, the quality and success of critical emancipatory research are ultimately measured by the positive change it helps to generate in the lives of the individuals and communities who are its very object of study. There are surely myriad ways through which critical research strategies can be put in place. While it would be impossible to address them all here, I will speak now of my own experience as a sociologist engaged in disability rights monitoring in a southern European university, to illustrate some of the tensions that arise when attempting to develop emancipatory (Barnes 2001) and activist research (Hale 2001). In this discussion, I want to highlight also the possibilities that this approach has opened up for disability rights struggles in Portugal.

Implementing Disability Studies in Portugal: success against all odds Let me go back in time for a while. In 2004, during my second year in the PhD programme at York University, Toronto, Canada, I was hired as research assistant with the Disability Rights Promotion International initiative. Funded by the Swedish International Development Agency (SIDA) and co-directed by Marcia Rioux and the late Bengt Lindqvist, DRPI was at that time in its initial stages of development. It had been launched in 2002 as a collaborative project to establish a comprehensive, sustainable international system to monitor the human rights of people with disabilities. From its inception, DRPI regarded monitoring not just as fact-finding about disability rights violations but as a truly empowering activity that provides a voice to marginalized disabled people, reinforces a collective identity among the disability community and supports its efforts to achieve social justice. A cornerstone of the DRPI approach has always been the central place of persons with disabilities in all stages of the monitoring process – from project design to data collection, analysis and reporting (Pinto 2011).

322  Paula Campos Pinto As research assistant, I was fortunate to participate in the development and pilot testing of DRPI data collection and data analysis tools; I co-facilitated international training in Canada and abroad; and, through email and long hours of phone and Skype conversations, I supported local teams in data analysis processes and reporting – from India to Bolivia, from Kenya and Cameroon to the Philippines, from the Honduras to Serbia and Montenegro. For 12 years, I never stopped working for DRPI, not even when I completed my degree and decided to return to Portugal to attempt an academic career there. I landed in Portugal in summer 2009. In my pocket I was bringing a doctoral diploma from a North American university (something which, à la Bourdieu, attested to my ‘scientific competence’), although in sociology (not the most prestigious science, after all), and a determination to pursue Disability Studies (a problematic goal given that I was seeking admission to a scientific community totally ignorant of its existence). I knew that applying for a faculty position in Disability Studies was impossible, as they were non-existent, so I was content to find a temporary, part-time job as assistant professor in the New University of Lisbon, teaching qualitative methods and a postgraduate course on public policy and social inequality. The latter, especially, provided me with the chance to at least surface some of the crucial issues accounting for the exclusion of disabled people in Portuguese society. Although my homecoming coincided with the emergence of the global fiscal and economic crisis which hit Portugal after 2010, dragging in the Troika (European Commission, European Central Bank and International Monetary Fund) and its escort of austerity measures, including severe public spending cuts and hiring freezes, I was lucky enough to get another, full-time contract in 2011, at the School of Social and Political Sciences at the University of Lisbon. It was not yet the tenure-track position I was longing for, but it granted me the stability I needed to start putting in place my plans. At that time, I was still working for DRPI, now as research associate, taking part in the design and implementation of the network of regional centres, one per world region; co-facilitating capacity-building activities with people with disabilities to monitor their rights in new areas of the globe, including North Africa and the Middle East; and participating in all activities aimed at ensuring the sustainability of our work, particularly the development of the DRPI hub, an online platform where all the DRPI tools, methods and materials are now available, for free, for download and use anywhere in the world. All these actions continued to be developed in close cooperation with people with disabilities and their representative organizations. I wanted to replicate this experience in Portugal, as I had been witness to the transformative power it held in disability communities around the world. The disability movement in Portugal had been described as fragmented and weak, dependent on state funding and thus submissive to its discretionary rule (Pinto 2012). I was convinced that the development of Disability Studies could contribute to shifting this power balance. The creation of the Disability and Human Rights Observatory (ODDH) in 2013 at the University of Lisbon was the strategy I used to give visibility to the area.

When academia meets activism  323 A seed grant enabled the establishment of the ODDH, which set up four dimensions for its work: •• •• •• ••

Information: dissemination and knowledge translation of research on disability and human rights as well as the organization and diffusion of relevant external resources; Training: organization of workshops, seminars, conferences and other training programmes targeted at persons with disabilities and their organizations, professionals of the disability sector, researchers and other stakeholders; Research: development of the disability and human rights field, notably through partnerships between higher education institutions (both national and international) and disability organizations; Social intervention and policy advice: field-testing and implementation of participatory tools in order to contribute to the design, evaluation and innovation of policies with an impact on the lives of persons with disabilities.

More importantly, echoing Bourdieu’s notion of ‘structural affinities’ and ‘homologous positions’, the ODDH set up an advisory board inviting for membership representatives of the main disability organizations in the country. This board has been fundamental in bridging the divide between academia and activism. The board meets formally at least twice a year, at the university premises, to design and evaluate the annual plan of action; in addition, it sets up working groups to discuss or work on specific topics (e.g. a working group on legal capacity). The first big goal that the ODDH embraced was the development and submission of the parallel report for Portugal’s evaluation as State Party to the Convention on the Rights of Persons with Disabilities in 2015–16. This very successful process started with the labour of researchers, who gathered the data and prepared the first drafts, but it gained political power and representativeness through an open discussion and iterative dialogue, sustained first among the members of the ODDH advisory board and later at the national level, enabling in the end a historical consensus within the disability movement to be reached (close to 250 organizations endorsed the report). As a follow-up to this process, in 2016 the first annual conference of the ODDH took place at the University of Lisbon, gathering close to 100 participants, including persons with disabilities and academics. In 2017, the second annual conference had 180 registered participants. The presence of so many people with a diversity of impairments on the university premises started changing the social perception of disabled people and contributed to the mainstreaming of disability in academic life. The large media coverage that these events attracted and the presence of key policymakers (the State Secretary for the Inclusion of People with Disabilities attended both conferences and, in 2017, a panel with Members of Parliament from all political parties represented in the Parliament took place) have been other important factors helping to raise the public visibility of Disability Studies. Within the School of Social and Political Sciences, the ODDH (and, for that matter, Disability Studies) is now

324  Paula Campos Pinto viewed as a strategic area of development. In consequence, funding has increasingly become available to pursue research and community outreach activities. In parallel, the Portuguese disability movement is increasingly showing an interest in the potential contribution of Disability Studies to its political struggles. For example, advocacy work around the introduction of an independent living scheme in Portugal has prompted research aiming to assess the social and economic conditions of people with disabilities living in different contexts (home, institutions and with the support of personal assistants). Through this and other activist initiatives, a new disability meaning-frame (Vanhala 2015) is emerging in Portuguese society: one that asserts an understanding of disability not just as a medical problem, but mainly as an experience of social oppression and a human rights issue. The successful story of the ODDH is constitutive of this new narrative, but it has also been made possible by this broader social change (Pinto 2018). This successful tale has not been without its challenges. Reflecting back on the brief course of my academic career, I can identify at least five major challenges, which to date I’m still facing. They are (in no particular order): (1) Time. Undertaking activist research in Disability Studies requires engaging with the disability community and developing ties with the movement. This implies undertaking a range of activities that go beyond traditional and required academic tasks: for instance, attending community meetings, facilitating capacity-building seminars with disabled people’s organizations and sharing knowledge with disabled people and their organizations in non-academic, accessible formats. None of these activities is valued in the scientific field. Moreover, given that in current times of ‘enduring austerity’, academic life is already under awful pressure (which translates into long hours of teaching, an overload of administrative work and the pressure for publication in peer-reviewed journals), finding the time to dedicate to these outreach activities poses a continuous challenge. Yet activities of knowledge translation and co-creation are essential to give meaning and authenticity to the work we do, and to ensure that our work is accountable and useful for the disability community we want to serve. Therefore, we need to continue engaging with them, while calling attention to their relevance for university life and curriculum development. (2) Leadership. As ties with the disability movement become stronger, researchers start to be viewed by disability activists as ‘one of us’. This is very encouraging for our work and an indicator that we are finding ways to bridge the academia–activism divide. Yet it also holds a challenge – due to the particular weaknesses of the Portuguese disability movement and the prevalence of ideas about the superiority of the scientific field in Portuguese society, I have found that it often leads to co-opting strategies. Often, disability organizations think that, as a researcher, I am in a better position than they are to advocate for their needs, or they expect that the ODDH takes leadership in political initiatives of disability rights claiming. On the contrary, I argue that research should support, not replace, disability activism. To the extent that

When academia meets activism  325 our work aims to strengthen disability rights struggles, not to substitute them, to fall in this trap would be, in my view, to betray our own purpose. This issue interconnects with the third challenge. (3) Role (in)definition. Since dominant positions in the scientific field tend to be occupied by more conventional scholars, and those engaged with activist research are still few, there are no role models for the newcomers. This creates a challenge in the sense that it raises questions about the borders of this new subfield – are there limits to what an activist researcher should do or be? So far I have been considering that yes, there is a line that should not be crossed and that is the line of scientific rigour, of ethics and honesty. We are trained as researchers and doing activist research is about putting our skills at the service of the disability movement, not changing our data to fit a particular political goal. If, by any chance, the outcomes of our research suggest an inconvenient truth for those we are concerned about, we have to stick with the data. What is more, we should use our ‘scientific competence’ to contribute to processes of critical reflection that sometimes may need to start right there, in the disability movement itself. (4) Lack of critical mass. This may be specific to the Portuguese context, but there is a small number of researchers engaged in Disability Studies. In addition, these few researchers are dispersed across the country, belonging to different universities which compete against each other for funding and rankings. Collaborative work among us is not always easy, but it is extremely important to develop and strengthen the field. So far, on most occasions, we have been able to beat competitive logics and participate in each others’ research and initiatives. But as more researchers enter the field this might become increasingly difficult. And yet, without critical mass, Disability Studies as a discipline will continue to lack credibility and, more importantly, will have only a limited impact on disability struggles for human rights and a life with dignity. (5) Lack of recognition is the fifth and last challenge I want to discuss. Despite its increasing visibility, for most of the actors and groups in the larger scientific field in Portugal (and perhaps elsewhere too), Disability Studies is still a very marginal discipline. It is true that the days when disability was not considered a ‘sociological topic of study’ are now over. And yet, just last year, in a competition for a tenure-track position in social policy at the University of Lisbon, my CV was assessed by one of the committee members as ‘too narrowly focused on disability’, a misrepresentation which, more than an objective assessment, reflected the broader notion that disability affects only a small number of people and therefore is of secondary importance for social policy. The same lack of scientific recognition is found in the relatively small number of peer-reviewed journals specifically dedicated to Disability Studies, and the even smaller number of those that, being focused on Disability Studies, are indexed in ISIS or Scopus, the most prestigious database available. While this may potentially dissuade newcomers from entering the field, I am convinced that it discourages only those who are not

326  Paula Campos Pinto truly committed to the discipline; on the contrary, it must be acknowledged that over the last few decades Disability Studies has been a vibrant and lively ground for the development of new ideas and knowledge, and that Disability Studies programmes and research have not ceased to grow, around the world and in Portugal too. I am sure that this will continue to be so in the near future, as long as we academics stay committed to meet activists, to jointly develop high-quality disability research, and co-produce data that is relevant and useful in strengthening struggles for disability rights, at global and local levels.

Acknowledgement This chapter was developed from the keynote address at the Euro-Mediterranean Conference on Disability Studies and Disability Activism, held at Malta, 2–4 May 2018.

References Ball, S., 2015. Living the neoliberal university. European Journal of Education, 50, 258–261. Barnes, C., 2001. Emancipatory disability research: project or process? Public lecture 24 October, City Chambers, Glasgow, UK. Available from: https://disability-studies.leeds. ac.uk/wp-content/uploads/sites/40/library/Barnes-glasgow-lecture.pdf [Accessed 31 December 2018]. Barnes, C., Mercer, G. and Shakespeare, T., 1999. Exploring disability: a sociological introduction. Cambridge: Polity Press. Bourdieu, P., 1976. Le champ scientifique. Actes de la recherche en sciences sociale, Année 1976, 2–3, 88–104. Cuba, E. and Lincoln, Y., 2004. Competing paradigms in qualitative research: theories and issues. In: S. Hesse-Biber and P. Leavy, eds., Approaches to qualitative research: a reader. New York, NY: Oxford University Press, pp. 17–38. Hale, C., 2001. What is activist research? Items and Issues, 2 (1–2), 13–15. Available from: https://issuu.com/ssrcitemsissues/docs/i_i_vol_2_no_1-2_2001?e=24618429/ 35326062 [Accessed 31 December 2018]. Hilgers, M. and Mangez, E., 2015. Bourdieu’s theory of social fields: concepts and applications. London and New York: Routledge. Oliver, M., 1992. Changing the social relations of research production? Disability & Society, 7 (2), 101–114. Oliver, M. and Barton, L., 2000. The emerging field of disability studies: a view from Britain. Presented at Disability Studies: A Global Perspective, Washington, DC, October. Available from: https://disability-studies.leeds.ac.uk/wp-content/uploads/ sites/40/library/Oliver-Emerging-field.pdf [Accessed 31 December 2018]. Pinto, P.C., 2011. Monitoring disability rights: a holistic approach. In: L.A. Basser, M. Rioux and M. Jones, eds., Critical perspectives on human rights and disability law. The Netherlands: Brill Publishers, pp. 451–478.

When academia meets activism  327 Pinto, P.C., 2012. Dilemas da diversidade: interrogar a deficiência, o género e o papel das políticas públicas em Portugal. Fundação Calouste Gulbenkian e Fundação para a Ciência e Tecnologia, Coleção Textos Universitários de Ciências Sociais e Humanas. Pinto, P.C., 2018. From rights to reality: of crisis, coalitions, and the challenge of implementing disability rights in Portugal. Social Policy & Society, 17 (1), 133–150. Russell, B., 2014. Beyond activism/academia: militant research and the radical climate and climate justice movement(s). AREA, 47 (3), 222–229. Vanhala, L., 2015. The diffusion of disability rights in Europe. Human Rights Quarterly, 37, 831–853.

Conclusion Kelley Johnson and Karen Soldatic

How do disabled people see, understand and participate in activism and ­advocacy? What practices do disabled people use to mobilize for social change? How do disabled people understand the different practices pursued to effect social change and how do they choose the most appropriate path for themselves? At what moment do they decide the need to move from street-based protest to more formalized activities and/or the need to develop disabled people’s representative organizations? What is the role of international organizations and networks in advancing disability activism and advocacy? What are the challenges to achieving and sustaining rights by people with disabilities? What roles do allies of disabled people play in the development of their advocacy and activism? How is the struggle for rights by people with disabilities challenged or supported by different social movements? What considerations come into play when working across differing identity groups? What contribution do disabled people make to these other struggles? What has been the impact of disabled people’s advocacy and activism in achieving positive social change? These were the questions that guided our work as editors of this book. As discussed in the Introduction, these questions emerged from both our personal and work experiences and have been implicitly mediated, challenged and explored by our contributors. As we noted in the Introduction, the structure of the book developed iteratively as we received chapters. In addition, on reading the book as a complete collection, we identified a number of deeper themes across this body of work. Some of our original questions became integrated into these themes which we saw as central to the discussion of what activism and advocacy mean at both a systemic and individual level in the lives of people with disabilities. In this conclusion, we reflect on and discuss these identified themes and consider some of their implications for disabled activists, advocates and allies. These themes appeared critical to the work of disabled activists, advocates and allies and the impact they were able to achieve nationally and internationally. Inevitability, these themes are interactive and, consequently, in writing about them, they overlap at times and their boundaries are blurred.

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Disability advocacy and activism What makes an activist, advocate or ally? One thing we found interesting is that contributors to this book did not self-define as either an activist or an advocate. Even though the literature suggests that there is a marked distinction between being an activist or an advocate, the contributors to this book did not conform to either of these positions explicitly. Rather, their focus was on the work they needed to do in their commitment to address past injustices and drive change for the future. Their involvement in the issues was shaped by their experience of activism and advocacy. Past histories, sometimes involving experiences beyond that of disability, informed their personal decisionmaking about which issues they wanted to take forwards. Contributors suggest there is a set of core questions which they consider, such as how they want to participate in the issue, what they feel they can bring, and what they hope to achieve as an outcome of their participation. One thing that appears to motivate their engagement with actions, campaigns and lobbying efforts is their sense of urgency about the issue. Therefore, the contributions suggest that disabled people operate across the spectrum of the advocate–activist continuum. The book chapters also reveal two different groups of people involved in disability advocacy and activism: people with disabilities and their allies. Life histories reveal how people with disabilities become aware of their own situation and then commit to working for change for themselves and for others. All the contributors, however, have recorded how their initial commitment and concerns led to the formation of alliances with others and, in some cases, their involvement in the development of DPOs and other organizations. It is apparent how important the action taken by individuals is in increasing their confidence and knowledge about the issues which concern them and in developing strategies for social change. The chapters also reveal the importance of relationships with allies who may not have disabilities but who are committed to disability justice and rights, and the people with disabilities with whom they are aligned. Importantly, allies enable access to resources for advocacy and activism, such as skills, knowledge, research and information critical to the work of disabled advocates and activists. Allies operate at different levels and play diverse roles. As the chapters illustrate, this can involve facilitating the advocacy and activism of disabled people, organizing and supporting the work of disability movement leaders, and negotiating structures of power from which, often, disabled people are excluded. This is not to suggest that allies are leaders within disability movements, but rather that they play an important role in the work of the disability movement. Individual vs collective action Collective and individual action are interconnected: we would argue from these chapters that without both, it is difficult to achieve change. Collective action depends on the individuals undertaking it, their commitment, resilience

330  Kelley Johnson and Karen Soldatic and skills. Some of the chapters in this book describe how individuals come to a self-reflexive understanding of their own position and a commitment to acting with others. As illustrated across the chapters, personal experiences of oppression and marginalization become strong motivations to work with others. Sometimes individual action raises a collective awareness of disability injustice: things other disabled people may experience but not necessarily have the freedom to articulate. Sometimes an individual action by itself can provide the basis for change and build collective action around what appears as a personal concern. Within the broader social movement literature, there has been critical debate among scholars about the possibilities, potentialities and limitations of individual advocacy and activism and collective action (Goodwin et al. 2001, Mansbridge and Morris 2015). One of the dominant themes to emerge across the chapters is that the actions, strategies and tactics of individuals and the collective mobilization of disabled people, combined, are necessary for driving social change for people with disabilities. Individual leadership, as articulated by our contributors, is necessary for negotiating across institutional and political structures. Individual translation of collective action to those in power is thus needed if collective action is to achieve structural, institutional and/or political change. Having committed people in a range of powerful positions or attaining such positions is advantageous as it provides needed follow-up through the ongoing negotiation of movement demands for social change and justice. As identified in these chapters, individual leaders and action often facilitate the work of DPOs, navigating the collective demands of disabled people within other civil society movements, such as the women’s movement, the LGBTIQ movement and Indigenous people’s movements locally, nationally and internationally, beyond the realm of governments. Individual action is necessary but not sufficient. Our book reveals how individuals require the commitment, support, skills and knowledge of others. It demonstrates repeatedly the importance of collective mobilization and agitating the state from the street. As many chapters reveal, for the work of individual advocates and activists to be taken up by governments, street-level and broadscale action remain core requirements to achieve maximum effect. The contentious politics of those working on the ground provides the base for negotiation, agitating and claimmaking for real change to occur. Further, as many of the chapters show, building collective action from individual commitment takes time and confronts a number of challenges. Internal dynamics can make reaching a consensus on goals and action difficult. Working across different civil society movements has a range of tensions related to how disabled people are seen by other oppressed or marginalized groups, availability of resources and different priorities. What is considered urgent is always contested. Working across movements It is evident from the chapters that often disability issues are not discrete. In particular, contributors discussed the ways in which gender, ethnicity, indigeneity and sexual orientation compounded their experiences of oppression as people with disabilities. Recognizing the complexities of multiple identities means that

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disabled advocates, activists and allies often need to or are required to work with a divergent range of other civil society rights movements. As the contributors suggest, such involvement is also motivated by the fact that disability, as an issue for social change, has not gained enough traction in society, nor have the resources become available to mount disabled people’s own claims for structural change. Often, this means that allying with other rights movements provides opportunities to build resources, knowledge and know-how on organizing around the issue. However, as some of the chapters reveal, while there may be learnings derived from participating in other social movements, these social movements do not readily reframe their own issues to be inclusive of disabled people. Contributors describe this as an ongoing disappointment. When difficulties in forming alliances were encountered, contributors documented how they had to mount their own campaigns to ensure that the issue gained the political traction required. This was most evident in those areas associated with disabled women and issues of sexuality – areas of disability justice that are often excluded from the disability movement, the women’s movement and the LGBTIQ movement. Contributors identify that cross-sectional activism is thus not always successful, despite prolonged engagement with these broader social movements. Alliance building across movements can dissipate over time, priorities of other movements may change or differ from those of disabled people, and then disabled people are compelled to generate their own campaigns, actions and strategies as a discrete area of mobilization. Further, as the chapters illustrate, formal representation of disability justice issues, concerns and claims require the formalization of disability advocacy and activism, via the work of DPOs, to facilitate engagement by other social movements. The work of DPOs and the leaders of such organizations is critical in translating the disability movement’s goals and demands for their successful inclusion in broader social movements. This is facilitated by different forms of disability activism and advocacy, particularly in the online and social media space, which provides a pivotal platform for disabled people to articulate their concerns around forms of ableism that are embedded, often unintentionally, in campaigns and actions by others, or that may silence and make invisible their relevance to the lives of people with disabilities. The importance of history The importance of history as a continuing motivation, obstacle and concern in relation to change is a theme across many of the chapters of this book. It is seen from the different perspectives of disabled people, activists, advocates and allies. Most significantly, the importance of history illustrates that context matters when working for change for people with disabilities. Historical context shapes the priorities, tactics, strategies and actions of disabled activists and advocates, and informs the framing of future advocacy and activist campaigns with the learning that comes from past actions. The particularity of a country’s history has a significant impact on the content, processes and practices of advocacy and activism now. Some countries have

332  Kelley Johnson and Karen Soldatic moved in the last thirty years to radically shift their social, legal, political and cultural understandings of disabled people, openly challenging historical views, institutions and policies that largely confined people with disabilities to segregated environments. For others, activism and advocacy by people with disabilities are relatively new phenomena and the priorities they give to their work and the area of focus of this work is therefore different. Nevertheless, in all cases the struggles for justice are designed to improve the lives of people with disabilities. This is most clearly evident with the importance of the closure of large institutions, a recurrent theme in this book. For some writers, the closure of large institutions for people with disabilities remains part of current campaigns and work that is ongoing in their countries. For others, the large institutions are recalled as sites of remembrance, where the struggle is now to acknowledge the dignity and the restricted lives of those who lived within them. In the past in some countries, deinstitutionalization was a strong motivating force for the development of advocacy and activism by disabled people. It was a rallying point in opposition to the ongoing stigmatization and devaluation of people with disabilities who were confined inside these institutions and asylums. The challenges confronted by people with disabilities and their allies in contesting the power of institutions and mobilizing to change policies and legislation are recalled and actively presented as a common theme in nearly all the chapters in this book. More recently, however, the UN Convention on the Rights of Persons with Disabilities (2006), even with its relatively short history, has become the organizing point for framing campaigns and actions. Seen by those involved in its drafting as a paradigm shift in the way people with disabilities are constituted, its importance to disability activists and advocates and their allies are reflected in chapters in the book. These reveal the importance of the CRPD as offering a positive vision of how people with disabilities might lead good lives in their communities. Contributors document that where governments are sympathetic to the ideas of the Convention, activists have been able to develop strategies to make their case for change to those with power on the basis of their country’s ratification. Equally importantly, the CRPD has provided an incentive and a positive motivation for the renewal or the development of advocacy and activism through the increasing strength of DPOs and the growth of collective agendas. This has occurred even when national governments that have ratified the CRPD have proved resistant to undertaking their responsibilities for change. The perseverance and resilience of disability activists and advocates and their allies is a strong theme in chapters throughout the book, and understanding the history of disability within their national, localized contexts plays a vital role in maintaining persistent pressure, even when governments ignore activists and advocacy mobilizations. Methods used by disability activists and advocates The contributions illustrate the divergence and convergence of methods drawn upon by disability activists and advocates in their work. These methods are highly varied, from participating in street-level contentious politics, forming their own

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organizations to advance claims on core issues of disability justice, engaging in learning, research and knowledge networks, and, increasingly, exploiting opportunities generated by the mass accessibility of online and social media platforms. Activists and advocates adopt these strategies and tactics depending on their personal circumstances, knowledge, access to resources and their concerns for personal safety and wellbeing. Particular methods, tactics and strategies emerge in order to get traction for a particular issue and, at times, as the result of the failure to have the issue taken up by either the disability movement or other social movements where there is overlap of similar concerns. Social media and online platforms, in particular, appear to provide opportunities to exploit the gaps in campaigns, reframe issues around disabled people’s demands for justice and build wider support from other people with disabilities not yet involved in advocacy or activism. Social media and online platforms also facilitate activism and advocacy for people with disabilities who, due to myriad reasons – personal safety, isolation, lack of resources – would not participate otherwise. The decision-making process of what methods to choose for maximum effect was shaped by what activists and advocates felt would result in gaining traction for the campaign. Often, methods were multi-pronged, and contentious mobilization was coupled with institutional advocacy by DPOs and organizational leaders. At other times, methods aimed to interrupt the political process, running candidates for seats within local and national parliaments. International advocacy and activism often result from the failure of nation-states to respond to disabled people’s actions. The targeting of the international sector is not only aimed at global governance institutions, such as the United Nations, The World Bank or the World Health Organization, but also at international media attention about local activism occurring on the ground. The ‘boomerang’ effect of such strategies is varied, in some instances achieving major concessions and sometimes resulting in significant compromises with some small gains. In all, the contributions reveal that disability activism and advocacy is highly tactical. The choices made about what methods to use are related to the aim of the activity. Methods such as the provision of accessible information about people with disabilities are used to raise awareness not only among people with disabilities but also the broader population. Others seek through radical and sometimes risky methods to draw attention to the issues which governments and organizations have ignored or resisted addressing. All these methods rely on advocates, activists and allies engaging in extensive discussion and negotiation about the aims of their work and the outcomes they hope to achieve.

Moving forward Whenever there is a need for a group to resist prevailing cultural norms, political, social and economic oppression, advocacy and activism become important movements in a society. Civil rights, women’s movements, Indigenous movements and LGBTIQ movements are examples that have generated change and

334  Kelley Johnson and Karen Soldatic led to ongoing reflection and scholarship. Activism and advocacy by and with people with ­disabilities have gained increasing power and strength over the last twenty years. Disabled activists and advocates have formed alliances and built social solidarity across divisions between impairment groups, alongside forming disperse networks locally and globally. In part, this has been the result of the assertion of their rights by other citizens. More recently, it is also the effect of the CRPD, which has provided a benchmark for people to work towards. In this book, advocates and activists have paused in their work to reflect and to write about their experiences. They have revealed nuanced and powerful accounts of diverse struggles not only with recalcitrant cultures and states, but also with other civil society movements. In thinking about the future and in the light of past achievements, we hope that the movement can grow and be sustained. The threats to this hope come from the austerity measures now in place in many countries where advocacy of people with disabilities may be viewed as a luxury. It may also come from some of the successes of the movement itself, where the achievement of goals for individuals may undercut collective action and reduce the power of disabled people to work together. Yet we remain hopeful. The contributions to this book have demonstrated the increasing power and the resilience of people with disabilities to claim and sustain their rights.

References Goodwin, J., Jasper, J. and Polletta, F., eds, 2001. Passionate politics: emotions and social movements. Chicago, IL: University of Chicago Press. Mansbridge, J. and Morris, A., eds, 2001. Oppositional consciousness: the subjective roots of social protest. Chicago, IL: University of Chicago Press.

Index

ableist 3, 94, 207, 216, 301, 331; attitudes 90; ideology 200; systems 126 abuse 138, 184–185, 188, 207, 211–213, 215–217, 319; acts of 272; disclosure of 132; domestic 190; emotional 292; human rights 269; of inmates 41; interpersonal 173; physical 93, 227–228; of power 163; prevention 132; psychological 227–228; sexual 108, 129, 138, 164, 166, 289; substance 163, 169; verbal 166, 213; of women 292; see also institutional Access All Areas 6, 35–36, 38–42, 44–45, 47–49 accessible 4, 29, 48, 68, 87, 117, 169, 183, 208, 213, 217, 224, 226, 237, 264–265, 303, 309, 333; accommodation 69; buildings 73, 110, 123; community 86; environments 151, 285; experience 58; formats 29, 269, 324; improving 268; independently 229; information 333; issues of 123, 146; properties 187; public transport 91, 119, 123; standards of 77; toilets 215; van 91; venue 54, 184; wheelchair- 54, 302; world 283 achievements 6, 63, 102, 106–107, 157, 224, 232, 281, 334 activism: Afrocentric 294; anti-capitalist 205; arts-based 49; development of 148; disability 1–2, 5, 8, 10–11, 100–104, 107, 110–111, 163, 182, 193, 195, 206, 217, 281–289, 291, 293–294, 298–300, 302–310, 324, 328, 331, 333; gender 292; implications of 103; innovative 308; landscape of 3; literature 98; local 18, 333; media 206, 208; non-governmental 299; online 8, 208, 210; policy-engaged 306; political 138; progressive 3; rights-related 131;

scholar- 170; transnational 281–282, 287, 298–299, 301–303, 305–308, 310 advocacy: civil liberties 67; collaborative 35; collective 158; community 67, 70–71; disability 2, 4–5, 7, 10, 72, 84, 86–88, 92, 100–101, 106, 126–130, 132, 147, 163, 207, 242, 328–329, 331; dynamics of 85; global 154–155; grassroots 101; growth of 7; human rights 67–68, 76, 87; indigenous 149; individual 67, 330; national 154, 281; participatory 208; policy 92, 284; political 7; public 133; sex trafficking 8; systemic 63, 126, 129, 138; transnational 10, 286–287, 299; see also institutional, self Agent Orange 300 albinism 289–290 Americans with Disabilities Act (1990) 1 anxiety 56, 163, 169, 230 Asia Indigenous Peoples Pact (AIPP) 147–148, 155–156 Asian Immigrant Women Advocates 301 Association for Children with a Disability 56 Association of Women with Disabilities Sri Lanka 7 austerity 49, 64, 179, 182, 185–186, 190, 315, 318, 324; cuts 49, 181, 184, 186, 190; drive 189; global 4; measures 189, 322, 334; policies 181 autistic 26, 28, 32, 55, 198, 217, 246; acceptance 197; activists 196–197, 200; blogging culture 194; children 200; community 193, 198; disability politics 193; epidemic 193; groups 161; rights 193 Autistic Self Advocacy Network (ASAN) 193

336 Index Bahner, J. 173 Barbour, A. 30–31 Barnes, C. 185, 207, 320–321 Bolshy Divas 205–207, 209–214, 216–218 Bourdieu, P. 11, 315–319, 322–323 Brexit 3, 189–190 British Broadcasting Company (BBC) 19, 40, 54 British Union of Physically Impaired against Segregation (UPIAS) 283 Buckley, D. 17, 23, 25, 32 Burke, P. 28, 30–31 Calderstones 15–20, 22, 25–28, 30–32 Cameron, D. 179 Campbell, F.K. 101–102 Canadian Association for Community Living (CACL) 304–306 Canadian Association of the Deaf 305 Canadian Centre for Disability Studies (CCDS) 304, 306, 310 Canadian International Development Agency (CIDA) 302–305 Canadian+ Network for DisabilityInclusive Development (CANDID) 306 Canadian Research Institute for the Advancement of Women (CRIAW) 309 Canseco, J.D. 235–236, 239–241 capitalism 194; communicative 197; informational 199; predatory 165; transnational 300 Castells, M. 194–196, 200, 207 Chronic Illness Cat 199–200 Chun, J.J. 301 citizen 16, 182–183, 245, 247, 252, 256, 285, 334; disabled 222, 249, 252–253; European 190; initiative 232, 235–236, 238, 240–241; rights as 115, 266; secondary 145; second-class 26, 30; -ship 9, 87, 173, 245, 253–254; see also social Clare Inclusive Research Group (CIRG) 7, 119–123 Clegg, N. 179 Clifford Simplican, S. 138 Coalition of Provincial Organizations of the Handicapped (COPOH) 302 collective 9, 107, 111, 128, 130, 152, 209, 217; action 108–109, 147–148, 152–153, 281–282, 287, 299, 320, 329–330, 334; aspects 84; awareness 330; body 5; cause 103, 107, 111; collaboration 85, 94; discourse 153; experiences 111;

focus 157; framework 149; goals 7, 99, 152; grief 61; history 37; identity 99, 151, 197, 321; inclusion 90; intelligence 209; memory 38; mobilization 101, 330; movement 99; nature 88; outcomes 110; position 138; reflexive learning 5; responsibility 57, 290; rights 151; story 126; strength 145; struggles 1–2; survival 199; voices 147, 153; way of life 145; work 4; see also advocacy Committee on the Elimination of Discrimination against Women (CEDAW) 152, 154–157, 185 Connor, S. 207, 210, 213–214, 216 Cooper, M., 1997 35–36, 39–41, 45 Council of Canadians with Disabilities (CCD) 302–304, 306–307, 310 Craft, A. 132–133 Crenshaw, K. 213, 300 Criminal Law (Sexual Offences) Act 121 cultural: activities 109; approach 146; artefacts 194; background 54; barriers 170, 320; bias 283; circumstances 288; cognitive 288, 291–292, 294; consequences 105; construction 162; contexts 1, 168, 320; discrimination 102; diversity 52, 54, 57; environment 281, 318; ethno- 8; exclusion 151; factors 165; foundations 286; heritage 35, 38; heterogeneity 289; idiosyncrasies 282, 289; imperialism 54, 149, 151; inequalities 172; influences 110; inter- 153; issues 149; landscape 205; matters 157; measures 248; models 294; mono- 149; multi- 189; negotiation 195; norms 98–99, 289, 333; organizations 197; performances 104; practices 85, 94; pressures 106; processes 98; protection 53; resistance 195; rights 9; sensitivity 151; socio- 7, 98; space 57; spheres 3; understanding 332; values 149, 154, 252 Dean, J. 197 deinstitutionalization 1, 72, 87, 227–229, 263, 265, 267–277, 293, 332 Diack, M. 17–20, 22–23 difficulties 62–63, 119, 184, 331; learning 15, 17, 25–30, 32; logistical 196; reading 167; systemic 72 dignity 1–3, 6, 11, 20, 22, 71, 76–77, 98, 122, 234, 247, 249, 251–252, 254–257, 291, 325, 332

Index  disability: access issues 59, 169; art 57–58, 217; community 54, 60–61, 83, 85, 87, 89–90, 93, 150, 182, 195–196, 200, 240–242, 317, 321–322, 324; culture 6, 57; discrimination 70–71, 73, 76–77; experience of 57, 101, 106, 157, 205; inclusion 10, 84, 88–89, 94, 110, 298, 309; injustices 101, 300, 310, 330; intellectual 6–7, 63, 71, 114–118, 120–123, 126–129, 131–134, 137–139, 170, 226, 240; issues 71, 84, 89, 102, 145, 155, 209, 318, 330; leadership 7, 97–98, 101–102, 110–111; learning 6, 15, 26–28, 35–40, 42–45, 47–50, 121, 167, 170, 196, 252; legislation 110, 285, 287; mental 92, 94, 282; movements 2, 4, 6–8, 87, 98–100, 102–104, 107, 145–146, 148, 154, 162–163, 168, 173, 183, 186–187, 198, 221–225, 229, 234, 238–242, 252, 285, 309–310, 319–320, 322–325, 329, 331, 333; neurological 226; organizations 9, 62, 102, 149, 152, 161–162, 208, 246, 251, 283–284, 305, 315, 320, 323–324; physical 59, 88–89, 92, 104, 226, 282; politics 60, 97, 161, 181, 189, 193, 283, 298; psychosocial 221, 226–227, 238, 240, 273, 281; reform 10, 206; representation of 53, 101; severe 250, 256; speech 107; support 56, 65; understanding of 7, 57, 234; world of 54, 56; see also activism; advocacy; citizen; justice; rights Disability Action Plans 77 Disability and Human Rights Observatory (ODDH) 322–324 Disability Clothesline 211–212 Disability Discrimination Act (1992) 1, 69, 76–78 Disability Rights Fund 234–235, 241 Disability Rights International 163 Disability Rights Promotion International (DRPI) 305, 315, 321–322 Disabled People Against Cuts (DPAC) 179–180, 182 Disabled Peoples’ International (DPI) 302 DisAbled Women’s Network of Canada (DAWN) 306–310 discrimination 37, 68–70, 78, 83, 98–100, 105–106, 110, 136, 145–146, 150, 170, 183–185, 187, 205, 213–214, 221, 226, 228, 235, 237–238, 268–269, 283, 285–287, 293–294, 310, 316; advertisements 69; against women 74;

337

allegations of 73; anti- 1, 67, 72, 77–78, 227, 229, 268; attitudes 94; behaviour 78; complaints of 70, 76; federal 76; gender 138, 185; impairment 70; indirect 73; intention 77; intersectional 146, 151–152, 155; issues 67, 69, 72; legislation 69; multilayered 145; non268, 285; normative 102; persistent 68; policies 89; practices 86; prohibition of 268, 285; provisions 225; race 67, 69, 166, 248; religious 74; society 99; state 76; systematic 109; systemic 70; unfair 285; see also disability; employment; ethnic; sex Doherty, D. 26–27, 31 Eames, R. 54 economic 189; active 233; agenda 287; backdrop 162; background 155; barriers 320; benefits 288; climate 58; conditions 324; context 165, 288; crisis 234, 322; development 83, 88, 248; discourses 6; environment 281, 287; factors 165; governing 4; life 90; networks 38; oppression 333; outcomes 88; participation 126; policies 165; positions 184; power 166, 287; rights 9; security 252; socio- 172, 233, 281, 283, 287; spheres 149; structures 319; welfare 252 education 69, 71, 83, 85, 87–90, 94, 106, 109, 146, 151, 154, 157, 166, 205, 222, 225–226, 233, 238–239, 247, 284–285, 292–293; access to 150–151, 286; activities 68; adult 36; attainment 233; campaigns 68; compulsory 89; formal 102; health 131, 133; higher 222, 323; inclusive 63, 88, 229, 237; mutual 74; policies 84, 87; poor 166; public 43, 76; resources 44; rights 151, 222; school 108; secondary 38; sex 121, 131, 133, 173; special 285; system 89; see also peer employment 48, 69, 71, 77, 83, 85, 87, 90, 93, 102, 108, 146, 190, 205, 222, 233, 238–239, 268, 285; benefits 237; discrimination 69–70, 285; foreign 150; formal 233; high-risk 102; laws 71; opportunities 108; part-time 62; -related projects 267; resources 66; skills 110 empowerment 84, 99, 103, 110, 169, 298, 307; dis- 90; of women 185 Enns, H. 302–304 equality 64, 76, 83, 134–135, 138, 153, 158, 183, 185, 224, 253, 255–256, 283;

338 Index of choice 268; disability 181–183; gender 135, 185, 298, 303, 307, 310; marriage 136–137; of opportunity 254; watchdog 190; see also inequality ethnic: -based discrimination 100; communities 109; conflict 150; diversity 109; historical sites 195; inter- 109, 290; leaders 293; minorities 182–183, 186; multi- 247, 290; understanding 189 ethnicity 8, 57, 67, 102, 108, 183, 301, 330 ethnolinguistic fractionalization 289–290 European Coalition for Community Living (ECCL) 269–270 European Commission (EC) 266–267, 271–272, 275, 277 European Network on Independent Living (ENIL) 10, 263–277 European Ombudsman 274 European Parliament 267, 275 European Structural and Investment funds (ESI Funds) 10, 263–269, 271–277 exclusion 8, 38, 83, 90, 92, 111, 126, 145–146, 149, 168, 171, 187, 196, 207, 213–214, 216, 270, 320, 322; history 93, 151; issues 154; ongoing 87; severity 247; see also sexual; social Faamanatu-Eteuati, N. 83 Farley, M. 166 Feminist International Assistance Policy (FIAP) 10, 298–300, 302, 307, 310 Ferguson, P. 282–283, 293 Fraser, N. 253–254 freedom 64, 76, 102, 171, 228, 290, 330; basic 227; of movement 264, 266 Frohmader, C. 213 Garden of Remembrance 19, 23, 25–26, 30–31 Garland-Thomson, R. 126 Garner, P. 84 Ghai, A. 100 Gippsland Women’s Health 134–135 Gleeson, J. 214 global: ascension 10; austerity 4; capitalist system 85; context 174, 246; development 8, 298; economic crisis 322; engagement 300; financial crisis 3; fiscal crisis 322; governance 10; grant 234; inequality 3, 164; influences 101, 284; initiatives 154–155, 157; level 10, 154–155, 281, 326; North 8, 10–11, 98, 100, 164, 167, 172, 174, 305;

notions 94; powers 97; production 307; realization 10; South 8, 10–11, 98–101, 103, 105, 111, 149, 161, 164–165, 167, 172, 174, 289, 294, 299–300, 302, 305; struggles 316; wealth inequality 168; see also advocacy Global Affairs Canada 304, 306 Global Disability Summit 310 Global Security and Cooperation (GSC) programme 320 Grech, S. 281, 287–288 Guardian 30, 181, 245, 250 Hall Carpenter Archives 37 Hankivsky, O. 301 Hardman, G. 18–20, 22 Harperbury Hospital 38–40, 43 Hine, C. 194 Hodgson, D. 150 Hollomotz, A. 127 Hookway, N. 194 Human Rights and Equal Opportunity Commission (HREOC) 69, 75–76 Human Trafficking Pro Bono Legal Center 174 impairment 8, 54, 57, 60, 62–63, 68–69, 92–93, 98, 150, 162–163, 168–170, 172–174, 200, 282–283, 286, 290, 298, 300, 308, 323, 334; cognitive 246; communications 63, 71; hearing 286; individual 57, 318; lifelong 170; living with 2; mental 234; partial 221; personal 63; physical 107, 172, 222, 264; politics of 300; production of 300, 307; psychiatric 172; psychological 222; sensory 222, 282; speech 249; total 221; visual 238, 286; see also discrimination Inclusion Melbourne 137 Inclusive Research Network (IRN) 119–123 independent living 120, 185, 263–267, 269, 274, 276, 324; access to 190, 263, 265, 267; initiatives 10; movement 87; right to 10, 190, 263, 265, 274, 277; situation 120 Independent Living Fund (ILF) 180–181 indigenous: activists 145; adults 156; advocacy 149; approach 149; children 156; communities 85, 150; disability 145, 147; discussions 145; federation 150; framework 148; groups 148–152; ideas of inclusion 94; identity 147, 149;

Index  issues 147; knowledge 248; languages 248; members 147; movement 8, 145–146, 148–149, 153–154, 156–158, 333; non- 145, 147, 149; norms 149; organizations 156; origins 247; people 66, 85, 145–152, 154–157, 247–248, 255, 300, 310, 330; philanthropy 153; population 248; self-advocates 150; studies 94; symbols 248; traditions 248; understanding of disability 7; women 8, 152–153, 156–158, 309; see also rights inequality 135, 166, 168, 172, 301; disability 301; gender 97, 135, 166, 301; global 3, 164; multiple forms of 301; root causes of 320; social 253, 322; structures of 248; wealth 168; see also equality institution: closure of 264–265, 273, 332; for disabled people 269, 332; dominant 195; global governance 10, 333; government 74; history 35, 38; horrific conditions in 270; housing 212; large 37, 71–72, 270; learning disability 38, 42, 49; long-stay 27–28, 38, 47–48; long term care 266; medical 212, 225; modern-day 43; penitentiary 212; political 291–293, 299; private 228; public 148; renovation of 270–272; residential 72, 263–264, 268–269, 273; state 254; traditional 146; welfare 225, 229 institutional: abuse 173; advocacy 333; agendas 234; care 35, 38–39, 44, 263, 267–270, 272, 276; culture 270, 273; frameworks 236–237; graveyard 16, 28–29, 32; history 6, 38, 42, 49; life 39–40, 47, 49; logics 194; mapping 194; movement 38; patients 16; practices 230; presumptions 194; processes 157; provision 270; reform 5; residents 25, 27; services 268; settings 211; sites 29; spheres 3; staff 17, 23; walls 31 institutionalization 35–36, 45, 48, 212–213, 225, 276, 293; end of 38, 49, 227; history of 35, 37; hospices 293; of people with disabilities 266, 283; persons 227 interdependence 84–85, 87, 94 International Centre for the Advancement of Community Based Rehabilitation 304 International Disability Alliance (IDA) 93–94, 148, 155–156, 235–236 International Federation of the Deaf 305

339

International Labor Organization 155, 164 International Network of Women with Disabilities 309 intersectionality 156, 184, 188, 212–214, 216, 298, 300–303, 308–310 intervention 23, 66, 84, 86, 238, 300; childhood 93; healthcare 28; medical 1, 282; neoliberal 290; policy 287–288, 291, 294; possibilities for 5; practical 23; social 323; state 300 isolation 35, 47, 88, 94, 146, 188, 210, 222, 365, 270, 272, 293, 333; contemporary 35, 49; forced 213; geographic 210; prevention of 265, 268; sense of 60; see also social ITV 64 Jarrett, S. 38 Jeffreys, S. 171–172 Jenkins, H. 207–209 justice 8, 11, 103, 172, 212, 291, 302, 320, 333; access to 67, 190; community 211; criminal 37; denial of 75; disability 4, 7, 9, 281, 298–300, 302–303, 307–308, 310, 329, 331, 333; distributive 107, 109; media 209, 217; pursuit of 286; struggle for 3, 248, 252, 332; system 70; theories of; transitional 98; see also social Kaaba, O.B. 290 Kandasamy, N. 98 Kangaspunta, K. 164 Keck, M. E. 10, 299 Kinney, E. 167 Kuper, A. 150 labour 55, 226, 323; cheap 162; child 162–163; emotional 165; forced 161–165; issues 162; law 225, 236; market 267; organizations 161; supply 172; trafficking 162–163; unions 226–227 Learning Disabilities Mortality Review 28 LGBT 183–184, 193–194, 196–197, 330–331, 333 Liddiard, K. 172–173 Lisney, E. 180 McArdle, S. 20, 31 McCarthy, M. 127–128 MacDonough, S. 136 McGrath, J. 121, 123

340 Index Maddison, S. 3–4 Madhouse 6, 35–39, 49 Magar, V. 151, 167 Majeed, M.T. 164 Manitoba League of Persons with Disabilities (MLPD) 307 Manning, S.M. 308 marginalization 8, 103, 126, 138, 171–172, 215, 246–247, 252, 330 Marshall, T.H. 245, 252–254 Millear, A. 1, 6 Mingus, M. 197 Ministry of Justice 23, 226–227 Minogue, G. 121 Miriam, K. 168 Mohanty, C.T. 302 National Confederation of Persons with Disabilities of Peru (CONFENADIP) 234–236, 240–241 National Council for the Integration of Persons with Disabilities (CONADIS) 233, 237, 241 National Disability Insurance Scheme (NDIS) 64, 115, 205–207, 210–211 National Federation of Indigenous Nationalities (NEFIN) 147 National Federation of the Disabled-Nepal (NFDN) 147–148 National Foundation for the Development of Indigenous Nationalities (NFDIN) 147 National Indigenous Disabled Women Association Nepal (NIDWAN) 147–148, 150–157 neoliberalism 162, 195, 302, 315 Nepal Indigenous Disabled Association (NIDA) 147–148, 150–154, 156–157 Neufeldt, A.H. 304 Nirje, B. 247 ‘No Longer Shut Up’ 36, 39 non-governmental organizations (NGOs) 10, 72, 83, 86, 88–89, 91–92, 94, 215, 232, 235–236, 239–241, 284, 303, 308–309 North, D.C. 288 North American Free Trade Agreement 162 North West Regional Forum (NWRF) of Self Advocates 26–31 North West Training and Development Team (NWTDT) 26, 29–30 Nuanua O Le Alofa (NOLA) 84–94

O’Driscoll, D. 39 Oliver, M. 87, 207, 283, 318 Open Society Foundations 241, 264 Open University 29, 35–36, 42 oppression 2, 100, 109, 126, 187, 196, 215, 248, 301, 320, 330; disability 87; economic 333; experiences of 330; fighting 187, 248; historical 146; intersecting 183; multiple 104, 138; state 145; systemic 215; see also social Parker, L. 188 Pathways Associates 26, 28–30 Patil, V. 302 Peacock, J.L. 99 Peck, S. 180 peer 31, 93, 121, 130, 132–133, 195, 270, 321; attitudes 121; education 7, 127–134, 137–138; facilitators 135; organization 91; review 317, 324–325; scrutiny of 317; support 264, 276 post-traumatic stress disorder (PTSD) 163, 166, 169 poverty 3, 97, 100–102, 110, 146, 150, 166, 168, 210, 233, 237, 247, 263, 268, 284, 298 prejudice 48, 66, 152, 157, 167, 170–171, 272 Pruce, K. 293 Purple Patch Arts 40 Queer Memes 199–200 Quijano, A. 85 racism 3, 67, 151, 167–168, 183, 301 respect 1–3, 6, 11, 17, 20, 23, 25, 27, 30– 33, 48, 65–68, 71–72, 77, 89, 133–134, 138, 148, 154–155, 214, 234, 252, 254, 256–257, 274–275, 292 Ribble Valley Borough Council (RVBC) 22, 31 rights: civil 87, 222, 252–253, 284, 333; disability 1–2, 7, 10–11, 17, 55, 62–65, 69, 73, 86–87, 90, 94, 98, 100–102, 106, 115, 126, 137, 146, 151, 155–156, 158, 163, 171, 174, 182, 189–190, 193, 206, 210, 217, 221–224, 226–228, 230, 232–235, 237–239, 241–242, 245–246, 248, 251–252, 254, 256, 263, 281, 287–288, 291, 298–300, 303, 305–307, 310, 315–316, 321, 323–326, 328; human 64, 66–67, 69–70, 73–78, 86–78, 100, 102, 145, 147, 151, 157,

Index  171, 174, 185, 189–190, 225, 226, 228–230, 233, 235–237, 239–241, 254, 264, 269, 272, 274–275, 287, 298, 300, 305–307, 310, 315, 320–321, 323–325; of indigenous people 148, 151–152, 155–157; parenting 55, 212; relationship 129, 131, 137; women’s 126, 185, 190, 292, 307; see also autistic; collective; cultural; education; political; sexual; sexuality; social Rioux, M.H. 305, 315, 321 Rozengarten, T. H., 173 Russell, B. 320 Ryan, S. 32 Sampson, J. 43 Scalmer, S. 3–4 Schick, E. 198–199 segregation 2, 38–39, 49, 55, 90, 184, 247–248, 252, 265, 268–270, 272, 332 self: -advocacy 2, 7, 26, 28–30, 63, 84–88, 94, 115–116, 118, 123, 127–129, 131–132, 138, 148, 150–152; -care 228; -concept 100, 106; -critical 2; -definition 3; -determination 85, 94, 173, 212; -employed 184; -esteem 173; -help 87, 302; -identification 183; knowledge of 151; -narratives 100; -organization 207; -promotion 200; -protection 184; -reflexive 10, 98, 152, 330; -reports 162; -representation 240, 302; sense of 103–104, 107, 111, 150, 189; -sufficient 264 Sépulchre, M. 254 sex: activities 166; commercial 166, 171–173; for disabled men 8;disadvantaged by 67; discrimination 69, 166; education 121, 173; experiences of 56; industry 165–166, 168, 171–173; least bad 131; paid 168, 171–173; rights 171–172; same 135, 137; slavery 165–168, 172; trade 164; trafficking 8, 161–169, 171–174; unprotected 170; workers 8, 167–168, 173 sexual: access 168, 170–172, 174; activity 121, 163, 213; acts 166; assault 132, 134–135, 166, 215, 308; citizen 138, 173; cleansing 292; defilement 289; degradation 166; deprivation 185; exclusion 171; exploitation 163–165; expression 173; gratification 171; harassment 188; harm 166, 171; health education 133; hetero- 53, 172, 196;

341

identity 55, 133; needs 173; options 171; organs 169; orientation 183, 214, 330; partners 173; performances 166; rights 131, 133, 138, 173–174; right to be 133; self advocacy 127, 131–132, 138; services 166, 172; support 173; transmitted infections 169, 289; trauma 163; violation 188; violence 127, 129, 150, 167, 213, 289, 308; see also abuse; education sexuality 8, 55, 57, 120, 122, 127–129, 131, 133, 171, 173, 184, 194, 214, 237, 301, 308, 331; education 131, 133; programme 138; rights 7, 131–132, 138 Sexual Lives & Respectful Relationships (SL&RR) 127–130, 131–132, 134–138 Slattery, J. 128 social: acceptance 172; barriers 283, 320; beliefs 291; care 181, 186, 293; change 2–6, 67, 114–115, 123, 126, 152, 157, 161, 207, 209, 240, 242, 319, 324, 328–329–331; citizenship 245–246, 252–257; disadvantaged 252; exclusion 247, 268–270; expectations 289; inclusion 38, 100, 171, 254, 263, 268, 276; inequality 253, 322; injustices 104, 110; integration 233, 266; interaction 53, 288; isolation 36, 54; issues 56, 288; justice 53, 99, 138, 199, 205, 207, 209, 217, 319, 321; life 90, 119, 318; media 4, 8–9, 30, 53, 179, 193, 196–197, 200, 206–210, 214, 216–217, 331, 333; model 57, 63, 92, 282–284, 305, 318, 320; movements 2–5, 7–8, 87, 157, 194–198, 200, 240, 299–302, 328, 330–331, 333; networks 38, 196, 210, 254; norms 99, 104, 111, 289; oppression 121, 333; outcomes 88, 98; participation 246; perceptions 317, 323; policies 84, 102, 167, 173, 267, 284, 293, 325; pressures 105–106; psycho169, 173, 221, 226–227, 238, 240, 273; rights 9, 173, 252–254; segregation 247; solidarity 3, 8, 334; stigma 104, 293; structures 294, 319; transformation 3–5, 11, 94, 287, 302, 319 Social History of Learning Disability (SHLD) Research Group 29, 35–36 SODIS 235–236, 239–241 Soldatic, K. 281, 286, 299–300 Sparrowhawk, C. 28, 32 Stephenson, B. 37

342 Index United Nations Convention on the Rights of Persons with Disabilities (CRPD) 1, 9, 49, 64, 77, 89, 93, 98, 101, 115, 147–149, 152, 154–157, 185, 190, 210, 222–223, 225, 228, 232–237, 250–242, 251, 254–255, 263, 265–266, 268–271, 273–275, 277, 281, 284–285, 298–300, 305–307, 310, 332, 334 United Nations Declaration on the Rights of indigenous Peoples (UNDRIP) 155 United Nations Global Report on Trafficking in Persons 164 United Nations Office on Drugs and Crime 163 United Nations Permanent Forum on Indigenous Issues (UNPFII) 146, 154–155 United Nations Permanent Forum on Indigenous Peoples 146, 154–155 United Nations Programme on HIV/AIDS (UNAIDS) 293 United Nations Special Rapporteur on the Rights of Indigenous Peoples 155 United Nations Special Rapporteur on the Rights of Persons with Disabilities 155, 239 United Nations Special Rapporteur on Trafficking in Persons 164 United Nations Women 126, 153, 157 United States Agency for International Development (USAID) 223, 292–293 Vanhala, L. 291 Varma, S. 169 Victorian Equal Opportunity Act (1977) 68–70, 73, 75 violence 98, 109, 126, 133, 135, 138, 163, 166–167, 169–173, 198, 207,

211–214, 216–217, 228, 320; actions 245; anti- 211; brutal 257; care-related 173; colonial 286; concept of 228; confrontations 255; consequences of 308; domestic 133, 173, 182–183, 188, 213; emotional 213; family 133, 213, 225; financial 213; gender-based 128, 133–134, 138, 166, 213, 215, 289, 292; interpersonal 165; male 182; partner 217; against people with disability 217; physical 213; prevention 132; reactions 249; in relationships 135; sexual 127, 129, 150, 167, 213, 289, 308; threats of 166–167, 169, 213; victimization 308; victims of 150; against women 217, 308 Walby, S. 301 Walmsley, J. 114 Watson, J. 166 Williams, Z. 186 Winterbourne View 41 Wolfensberger, W. 247, 252 Women With Disabilities Australia 129, 213 World Assembly of Disabled People International 56 World Bank 149, 233, 238, 304, 333 World Conference on Indigenous Peoples 155 World Declaration on Human Rights 222 World Health Organization (WHO) 102, 126, 149, 333 World Report on Disability 126 World War II 16, 179, 282 Yooralla 58 Young, S. 54, 59–61