Intersectional Colonialities: Embodied Colonial Violence and Practices of Resistance at the Axis of Disability, Race, Indigeneity, Class, and Gender 9781040027462, 1040027466

Citation preview

INTERSECTIONAL COLONIALITIES EMBODIED COLONIAL VIOLENCE AND PRACTICES OF RESISTANCE AT THE AXIS OF DISABILITY, RACE, INDIGENEITY, CLASS, AND GENDER Edited by Robel Afeworki Abay and Karen Soldatić

Intersectional Colonialities

This book provides a rich synthesis of empirical research and theoretical engagements with questions of disability across different practices of colonialism as historically defined – post/de/anti/settler colonialism It synthesises, critiques, and expands the boundaries of existing disability research which has been undertaken within different colonial contexts through the rich examination of recent empirical work mapping across disability and its intersectional colonialities. Filling an existing gap within the international literature through embedding the importance of grounding these within scholarly debates of colonialism, it empirically demonstrates the significance of disability for the broader scholarly fields of postcolonial, decolonial, and intersectional theories It will be of interest to all scholars and students of disability studies, sociology, critical studies, sociology of race and ethic relations, intersectionality, postcolonial and decolonial studies, and human geography. Robel Afeworki Abay is sociologist and guest professor of participatory approaches in social and health sciences at Alice Salomon University of Applied Sciences Berlin. Karen Soldatić is a Canadian excellence research chair, Health Equity and Community Wellbeing, Toronto Metropolitan University and Whitlam Fellow at Western Sydney University.

Intersectional Colonialities Embodied colonial violence and practices of resistance at the axis of disability, race, indigeneity, class, and gender Edited by Robel Afeworki Abay and Karen Soldatić

First published 2024 by Routledge 4 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 605 Third Avenue, New York, NY 10158 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2024 selection and editorial matter, Robel Afeworki Abay and Karen Soldatić; individual chapters, the contributors The right of Robel Afeworki Abay and Karen Soldatić 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 Names: Abay, Robel Afeworki, 1989- editor. | Soldatic, Karen, editor. Title: Intersectional colonialities : embodied colonial violence and practices of resistance at the axis of disability, race, indigeneity, class, and gender / edited by Robel Afeworki Abay and Karen Soldatić. Description: Abingdon, Oxon ; New York, NY : Routledge, 2024. | Includes bibliographical references and index. | Identifiers: LCCN 2023054732 (print) | LCCN 2023054733 (ebook) | ISBN 9781032247748 (hardback) | ISBN 9781032248561 (paperback) | ISBN 9781003280422 (ebook) Subjects: LCSH: Sociology of disability. | Imperialism

Social aspects. | Postcolonialism

Social aspects. | Marginality, Social. Classification: LCC HV1568 .I6153 2024 (print) | LCC HV1568 (ebook) | DDC 362.4

dc23/eng/20240214 LC record available at https://lccn.loc.gov/2023054732 LC ebook record available at https://lccn.loc.gov/2023054733 ISBN: 978-1-032-24774-8 (hbk) ISBN: 978-1-032-24856-1 (pbk) ISBN: 978-1-003-28042-2 (ebk) DOI: 10.4324/9781003280422 Typeset in Sabon by MPS Limited, Dehradun

This book is dedicated to indigenous, enslaved and colonized people across the globe who have consistently, bravely and unapologetically been fighting to preserve their dignity, land, sovereignty, language, and culture across time and generations.

Contents

List of figures List of contributors Foreword by Mapheyeledi Sibindlana (Motimele) Introduction: The relevance of analysing embodied violence and practices of resistance, contestation, and mobilisation at the axis of disability, race, indigeneity, class, and gender

x xi xvii

1

ROBEL AFEWORKI ABAY AND KAREN SOLDATIĆ

1 Decolonising disability studies: Conceptualising disability justice from an African community ideal

10

OCHE ONAZI

2 Racialised and gendered ableism: The epistemic erasure and epistemic labour of disability in transnational contexts

26

NIRMALA EREVELLES AND ROBEL AFEWORKI ABAY

3 Trans-Latinidades, disability and decoloniality: Diasporic and Global South LatDisCrit lessons from Central America

51

ALEXIS PADILLA

4 Degeneracy and replacement: Reproducing white settler anxieties in the 21st century MADI DAY

68

viii

Contents

5 Disabled Romani people in Germany: Learning from the notion of indigeneity in disability studies outside of settler-colonial states

86

YVONNE WECHULI AND ROBEL AFEWORKI ABAY

6 Africa and the epistemic normativity of disability

100

ELVIS IMAFIDON AND KENNETH UYI ABUDU

7 Impossible working lives and disabled bodies during racialised capitalism: Perspectives from Germany and the United Kingdom

120

ROBEL AFEWORKI ABAY AND MARIA BERGHS

8 Stigma as a structure of disablement: Towards collective postcolonial justice

137

VALÉRIE GRAND’MAISON AND KAREN SOLDATIĆ

9 Coloniality, disability, and the family in Kurdistan-Iraq

156

M. LYNN ROSE

10 Raising children with autism in a patriarchal society of a new liberal state: Experiences of mothers of autistic children in Bangladesh

172

SHARIN SHAJAHAN

11 Disability discourse and Muslim student organisations in Malang, Indonesia

189

SLAMET THOHARI, TITI FITRIANITA, AND UCCA ARAWINDHA

12 Migration studies and disability studies. Colonial engagements past, present and future

205

NICOLA BURNS

13 Colonial and ableist constructions of ‘vulnerability’: The impact of restrictive asylum conditions on disabled people in the United Kingdom and Germany REBECCA YEO AND ROBEL AFEWORKI ABAY

218

Contents ix

14 Towards a decolonial approach to disability as knowledge and praxis: Unsettling the ‘colonial’ and re-imagining research as spaces of struggles

233

XUAN THUY NGUYEN

15 Reflecting on the how questions: Using intersectional methods for policy changes

252

DEBORAH STIENSTRA

16 Cultural humility in participatory research: Debunking the myth of ‘hard to reach’ groups

269

ROBEL AFEWORKI ABAY AND HELLA VON UNGER

Index

285

Figures

4.1 4.2 4.3 14.1 14.2 14.3 14.4

Flyer distributed in Brisbane, QLD Flyer distributed in Sydney, NSW, & Adelaide, SA Flyer distributed on Sunshine Coast, QLD A map of Dong Son commune, A Luoi district, Thua Thien Hue Province A site with ‘no entrance’ in Dong Son commune Drawing ‘I am a leader because …’ created by Linh, aged 12, A Luoi district Our Journey, a TDKRA documentary film, 2019

83 84 85 236 237 246 248

Contributors

Robel Afeworki Abay is sociologist and guest professor of participatory approaches in social and health sciences at Alice Salomon University of Applied Sciences Berlin. Previously, he has worked as a research associate at the Institute of Sociology at Ludwig-Maximilians-University of Munich and the University of Kassel, Germany. He holds a PhD from the Center for Inclusion Research Berlin (ZfIB) at Humboldt University of Berlin on intersectional colonialities of racism and ableism. His research and teaching interests include intersectional disability justice; racism & ableism; gender & queer studies; diversity & intersectionality; migration & mobility; postcolonial & decolonial theories; climate & social justice; and participatory research. He is also a research associate at the University of Johannesburg as well as the founder and executive director of the network, Intersectional Disability Justice (IDJ): https://www.intersectional-disabilityjustice.org/en/intersectional-disability-justice-english/ Kenneth Uyi Abudu is a Lecturer in the Department of Philosophy, Faculty of Arts, Ambrose Alli University, Ekpoma, Nigeria. He holds a Bachelor of Arts degree with a First Class Honours from Ambrose Alli University Ekpoma and a Master of Arts degree in philosophy with a Distinction from the University of Ibadan, Nigeria. He’s currently a PhD student in the Department of Philosophy, University of Ibadan, Nigeria. His areas of research and competence include epistemology, African philosophy, philosophy of disability, and philosophy of the environment. He has published articles and chapters in books in these and other areas of philosophy. Ucca Arawindha is a Researcher and Lecturer at the Department of Sociology within the Faculty of Social and Political Science at Universitas Brawijaya, located in Malang, Indonesia. Ucca completed her bachelor’s degree at Universitas Brawijaya (UB) and her master’s degree at Gadjah Mada University. Her research interests span across various topics such as disability, social movements, social justice, people with HIV, and other marginalized groups within society. Currently, she serves as the head of the research group “Social Inclusion and Transformation” within the Sociology Department at UB.

xii

Contributors

Maria Berghs is Associate Professor of Global Health and director of TASC Unit (tascunit.com) at Leicester School of Allied Health Sciences, UK and an Anthropologist with a PhD in sociology and social policy. She works in the field of medical anthropology and sociology, specialising in disability studies and chronic illness. Her research interests include disability, chronic illness, global health (sickle cell), humanitarianism, ethics, sociology and anthropology of cure, gender, and West Africa (Sierra Leone). She has published books, numerous chapters, journal articles, and commentary pieces. Nicola Burns is a Senior Lecturer in disability studies in Sociology at the University of Glasgow. Her work is underpinned by engagement with issues of equality, human rights, and social justice. Her research and teaching focus on diverse issues including disability, equality and human rights, migration, and health. She has a particular interest in the intersection of migration and disability. She has published widely within the fields of disability, health, and migration. Madi Day is a Lecturer and PhD candidate in the Department of Indigenous Studies at Macquarie University in Dharug Ngurra (Sydney, Australia). Their research areas include Indigenous LGBT+ resistance and resilience, gender and colonialism, heterosexuality, and white settler violence. In 2023, Madi was awarded the Fulbright Sir John Carrick Scholarship for NSW to undertake research comparing anti-colonial approaches to gender and sexuality studies in so-called Australia and the United States. Nirmala Erevelles is a Professor of social and cultural studies in education at the University of Alabama. Her teaching and research interests lie in the areas of disability studies, critical race theory, transnational feminism, sociology of education, and postcolonial studies. Her book Disability and Difference in Global Contexts: Towards a Transformative Body Politic was published by Palgrave in November 2012. She is currently working on a book-length manuscript tentatively entitled Cripping Empire: Theorizing Intersectionality as if Black/Brown/Disabled Lives Matter. Titi Fitrianita is a Researcher and Lecturer at the Sociology Department of Universitas Brawijaya (UB). She obtained her bachelor’s degree from Universitas Brawijaya and her master’s degree from Gadjah Mada University. Her research interests include gender studies, pesantren studies, Islam, and social exclusion. Titi is actively involved in the minority research group within the Faculty of Social and Political Science at UB. Additionally, she has been actively engaged in researching disability issues in Indonesia, particularly in relation to Islam and pesantren. Since 2017, Titi has been serving as a Researcher at the Center for Pesantren and Community Development Studies (PSP2M) in Brawijaya University.

Contributors

xiii

Valérie Grand’Maison (she, her) is a mother, feminist, and scholar-activist. She is a PhD candidate in sociology at the University of Guelph, Ontario. Her research takes an intersectional feminist approach and focuses on gender-based violence, activism, and notions of justice for diverse women with disabilities in Canada and internationally. She has published scholarly articles and chapters on the impacts of the COVID-19 pandemic on people with disabilities, femicide of women and girls with disabilities, and the housing situation of people with disabilities. Elvis Imafidon is a Lecturer in the School of History, Religions and Philosophies at the School of Oriental and African Studies (SOAS), University of London, London. He specialises in comparative African philosophy and continental philosophy with specific interests in African ontology, African ethics, African epistemology, African philosophy of difference philosophy of disability, and philosophy of public health and alterity studies. He is the author of many articles on philosophy of albinism in Africa and also of the book African Philosophy and the Otherness of Albinism: White Skin, Black Race (Routledge 2019) and an editor of Handbook of African Philosophy of Difference (Springer 2020). Mapheyeledi Motimele is the Founder and Director of Root Fed Consultancy. She is an occupational therapist and previously worked a senior lecturer in the division of occupational therapy at the University of Cape Town (UCT). Her research interests are focused on healing and violence, as shaped and influenced by context and the implications of this for developments in occupational science and the role and scope of occupational therapy practice. Her Masters’ dissertation focused on disability and violence, more specifically the role of occupation(s) in the healing journeys of those physically disabled through violence. She is currently a PhD candidate investigating manifestations of violence within protest during the Rhodes Must Fall (RMF) movement at UCT (2015–2016). Xuan Thuy Nguyen is an Associate Professor, Institute of Interdisciplinary Studies, Carleton University, Canada. She is the Principal Investigator in a number of collaborative research projects, including Transforming Disability Knowledge, Research, and Activism (TDKRA) and Learning with and from the global South: Opportunities for engaging girls and young women with disabilities across Southern spaces (ENGAGE), funded by the Social Sciences and Humanities Research Council of Canada. Her research focuses on the transdisciplinary areas of critical disability studies, human rights, inclusive education, and critical childhood studies. Oche Onazi is a Senior Lecturer in Law at the University of Stirling and a former Early Career Research Fellow of the Independent Social Research Foundation (ISRF). He holds degrees from the Universities of Edinburgh (PhD), Warwick (LLM), and Jos (LLB) and is a qualified (but non-practicing)

xiv

Contributors

Barrister and Solicitor of the Supreme Court of Nigeria. Oche’s research interests cover areas of legal philosophy, law and development, and human rights. He is the author of An African path to Disability Justice: Community, Relationships and Obligations (Springer, 2020) and Human Rights from Community: A Rights-Based Approach to Development (Edinburgh University Press, 2013). Alexis Padilla is a blind brown Latinx Scholar/Activist and a Lawyer who holds a PhD in sociology and another PhD from the Language, Literacy, and Sociocultural Studies department at the University of New Mexico, USA. Currently an Independent Researcher affiliated as Visiting Professor with the University of Missouri Saint Louis. Dr. Padilla is the author of Disability, Intersectional Agency and Latinx Identity, an interdisciplinary book published by Routledge in 2021. As well as the co-author of a volume titled Humanizing Disability, published by NCTM in 2019. His publications explore emancipatory learning, radical agency, and intersectional disability justice/theology in the context of decolonial Latinx theorizing and critical disability studies, emphasizing the activist/ disability advocacy vantage point combined with actionable dimensions of inclusive equity research and practice. Lynn Rose joined the faculty at the American University of Sulaimani, Iraq, in 2016, following twenty years as a teacher-scholar in the US and Germany. She serves as a Professor in the Social Sciences at AUIS, where she teaches disability studies and the history and humanities of the premodern world. Her earlier scholarship focused on disability studies in the ancient Graeco-Roman world. More recently, her interest has shifted to disability studies in the contemporary global South. Sharin Shajahan has worked as an Assistant professor of Gender Studies at Asian University for Women (AUW). She has also served as the Head of Core Programme for a year at AUW. Currently, she is completing Post Doc Fellowship at KREA University in India. Naomi gives talks on women’s rights and feminism in national and international platforms. She has publications and research works in a number of areas including violence against women, women empowerment, feminism, anti-feminist backlash, disability, indigenous rights, human rights and humanitarian law, refugee rights, peace and conflict resolution, postcolonial knowledge, and environmental justice. She completed PhD from Murdoch University, Australia. She was awarded Australian Leadership Award 2010 for pursuing Masters of Arts in Human Rights at Curtin University, Australia. In 2019, she received DHS fellowship from USAID and Cornel Climate Online Fellowship. Karen Soldatić is Canadian Excellence Research Chair, Health Equity and Community Wellbeing, Toronto Metropolitan University and Whitlam Fellow at Western Sydney University. Karen’s work engages with critical

Contributors

xv

questions in relation to global disability inequalities and reparatory justice, particularly for Minority, Black and Indigenous women with disability. Her research on global welfare regimes builds on her 20 years of experience as an international (Cambodia, Sri Lanka, Indonesia), national, and state-based senior policy analyst, researcher, and educator. She obtained her PhD (Distinction) in 2010 from the University of Western Australia. She is the International Editor of the Routledge Interdisciplinary Disability Studies Series. Deborah Stienstra holds the Jarislowsky Chair in Families and Work at the University of Guelph, where she is the Director of the Live Work Well Research Centre and a Professor of Political Science. She is the author of About Canada: Disability Rights (Fernwood, 2020). 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. Her work also contributes to comparative and trans/international research and theory related to intersectional disability rights and justice. Slamet Thohari is a Researcher and a Lecturer at the Department of Sociology, Universitas Brawijaya (UB). He received his bachelor’s degree in Philosophy from Universitas Gadjah Mada and his master’s degree from the University of Hawaii at Manoa in the USA. He is also a cofounder of the Center for Disability Studies at Universitas Brawijaya, Indonesia, where he has worked as a Researcher for eight years. Currently, Slamet is pursuing his PhD at the Institute for Culture and Society, Western Sydney University. His research interests include disability issues, gender, intersectionality, disability and literature, and disability art and medical sociology. He has been also involved in disability movement doing advocacy in disability issues in Indonesia. Hella von Unger is a Social Scientist and Professor of sociology with a focus on qualitative methodologies at Ludwig-Maximilians-University (LMU) Munich, Germany. Her research focuses on health and illness in the context of migration and ethnicity. She has also published on participatory methodologies, reflexivity and research ethics in the social sciences. Yvonne Wechuli studied Rehabilitation Sciences in Dortmund (Germany) and Health Sciences in Linköping (Sweden). Currently a Research Fellow at the Department of Disability, Inclusion, and Social Participation at the University of Kassel (Germany), she is pursuing a PhD on the theorisation of affect and emotion in Disability Studies at the University of Cologne (Germany). Postcolonial Theories inform this project unpacking how inequality and difference are dismembered. Her previous projects addressed disabled people’s participation in the areas of (co-) housing, health, and entrepreneurship – the latter in the Global South.

xvi

Contributors

Methodological expertise includes intersectionality, qualitative research, participatory research, and social impact assessment. Rebecca Yeo is an activist and academic specialising in issues of disability and migrant justice https://disability-migration.org.uk. Her doctoral and postdoctoral work included bringing people in the asylum system and the disabled people’s movement into conversation with each other. Her book, also published by Routledge ‘Disabling Migration Controls’ explores the relevance of insights and achievements of the disabled people’s movement for wider social justice. Prior to this, for many years her work focussed on issues of disability and chronic poverty at the global level.

Foreword

As a Black person, occupational therapist, spiritual counsellor, researcher and educator, conceptions and approaches to disability have been closely aligned with my work and research. My particular interest in disability and violence in South Africa has led me to the importance of the decolonial project and its potential to shape and inform understandings of disability that centre the knowledges (experiences, perspectives, and insights) of people negotiating disability in contexts where they experience multiple compounded constraints, such as the Global South. I am grateful to the editors of this book, Prof. Afeworki Abay and Prof. Soldatić, for the opportunity to engage with thinkers and writers from around the globe as they tackle the important, yet complex, task of analyzing embodied colonial violence as it manifests across disability, race, indigeneity, and gender. This intellectual work is unsettling and takes the reader to the core of what it means to have one’s humanness and personhood constrained by inherently violent (yet accepted) systems, structures, policies, and practices that endure and are entrenched in daily practices that are normalized. The contributors to this book are applauded for taking on this work. Their interrogation of ‘Intersectional Colonialities’ from their respective positions is a much-needed endeavour and gives me hope regarding the potential impact of this necessary work towards decoloniality. Reading this work was healing and soothed the ever-fresh colonial wound(s) that is reproduced across generations and locations. This book raises some very important questions regarding the role of academics and intellectuals in confronting the colonial violence inherent in traditional disability discourse. Engaging with each piece offered key considerations as to how decolonial and intersectional lenses might be best suited to achieve this. Below, I briefly outline what I see are the most significant implications for the field of disability studies with the intention to highlight the aspects that stood out for me as a decolonial scholar. As a scholar who has conducted research concerned with disability and violence, using Narrative methods (see Motimele, 2013). I am curious as to what may be revealed through centring disability studies towards gaining a more nuanced understanding of violence and the structures that perpetuate

xviii

Foreword

disabling conditions despite developments in this and other relevant fields of scholarship. Such a line of enquiry encourages disciplines to critically reflect on how they have understood disability in and as context in order to identify and challenge the inherent assumptions regarding humanity, personhood, and ability that are embedded in various perspectives. In this way, centring disability studies offers a critical lens through which to interrogate dominant, accepted, and normalized perspectives of violence. This is best exemplified by Nicola Burns’ chapter. She argues for the need for fields such as migration studies to engage critically with disability studies to better engage with the ways disability is central to understanding migration as an ontoformative process. Her reflections reiterate the need to centre the lived experiences of disabled migrants towards developing a more nuanced understanding of the politics of movement and exposing oppressive assumptions within migration studies that continue to render disability invisible. I found this idea especially invigorating when considering what a similar approach applied across various disciplines and discourses may reveal about the colonial roots of the notion of disability, including disability erasure, and the ways in which disciplines may be complicit in this regard. Further to this, as a researcher, I have been challenged to interrogate the violence perpetuated within scholarship. More specifically, the structures of power that privilege researchers and continue to position us as the experts in making sense of the experience(s) of study participants. I am especially conscious of our complicity in perpetuating epistemological violence should we as researchers and academics not interrogate standard research processes, ethics, traditions, and methods within scholarship that might sustain and reproduce constraining and disabling conditions. I noted several authors who used narrative methods and argued for participatory approaches within research towards foregrounding coloniality as context and exposing the researcherparticipant relationship as a potential site of epistemological violence. The chapters in this book that centred the narratives of disabled groups were particularly impactful for their ability to communicate the violence experienced in the everyday intersections of race, gender, ethnicity, and ability often entangled and nested within people’s roles in families, religions, and other social structures that provide both meaning and purpose. These narratives surfaced the complexity of navigating colonial intersections that, through everyday social participation, force marginalized groups to participate in their own oppression, and constrain their ability to resist and dismantle the structures that perpetuate this. Even so, I was encouraged by the power of story to challenge dominant narratives and offer counter-narratives that expose constraining conditions and confirm the continued presence and far-reaching consequences of colonial violence(s), despite being denied. Lastly, I have found myself coming back to a central question that emerged in my own research with Rhodes Must Fall (RMF) student activists at the University of Cape Town (UCT) who called for the decolonization of the university, adopting creative means and mediums of protest. I kept

Foreword

xix

asking myself: ‘How do we close the gap between those mobilizing and those theorizing in order to effect social change?’ (Motimele, 2022). RMF student activists hosted a series of seminars during their occupation(s) of various university spaces with the intention to claim space and create opportunities for learning that situated their experience of alienation within the broader discourse(s) of Western hegemony. They developed a decolonial framework informed by Pan Africanism, Black Radical Feminism, and Black Consciousness and Intersectionality, in so doing, subverted the hierarchy of the traditional student-lecturer/academic relationship and challenged the existing curriculum and boundaries of the classroom. As an educator and researcher, this encouraged critical reflection regarding my (and our collective) contribution within higher education. How might we embody activist scholarship? How might we need to think about and do research differently in order to challenge colonial structures that continue to alienate and Other marginalized disabled people? This book helps us think through the praxis of critically engaged solidarity that builds the link between the repertoires of mobilization for a socially just decolonized world in dialogue with the global disability activists’ repertoires of critical scholarship for disability justice (see Soldatić and Chapman, 2010). Reading this book with the above questions in mind offered valuable insights regarding the conditions that sustain the gap mentioned above and the theoretical, practical, and personal shifts necessary to begin to address it. You are invited to do the same, noting aspects that stand out for you and further questions raised. This book is a must-read for anyone who is thinking and writing about decolonial and intersectional approaches to understanding disability. The various perspectives and arguments are insightful and encourage further reflection regarding the contributions of academics, educators, researchers, and colonized people to the decolonial project. Mapheyeledi Sibindlana (Motimele) Division of Occupational Therapy, University of Cape Town, South Africa

References Motimele, M. R. (2013). Disability and Violence: A Narrative Inquiry into the Journey of Healing [Masters’ Thesis, University of Cape Town]. https://open.uct.ac.za/ bitstream/handle/11427/2982/thesis_hsf_2013_motimele_m.pdf;sequence=1 Motimele, M. R. (2022). Engaging with Occupational Reconstructions: A Perspective from the Global South. Journal of Occupational Science, 29, 478–481 10.1080/ 14427591.2022.2110659. Soldatić, K. & Chapman, A. (2010). Surviving the Assault? The Australian Disability Movement and the Neoliberal Workfare State, Social Movement Studies, 9(2), 139–154.

Introduction The relevance of analysing embodied violence and practices of resistance, contestation, and mobilisation at the axis of disability, race, indigeneity, class, and gender Robel Afeworki Abay and Karen Soldatić Introduction In 2020, in the early stages of the COVID-19 global pandemic, we began discussing the possibilities of co-editing a disability collection that specifically aimed to distil, explore, and articulate disability’s relationality to practices of categorisation under diverse colonialities of rule. As time unfolded and the pandemic intensified, we felt that it would be important to create a shared global disability dialogue that more clearly elucidated the positionality of disability – how it is made, created, seen, witnessed, experienced, resisted, and contained – under diverse colonial contexts and all its pretences. These notions shaped our decision making around who should be included within the volume. Our aim was to bring together, in collective dialogue, a group of disability scholars that articulated disability’s diverse entanglements, broadly defined. In reaching out to the contributors, one of the unique features that we noted that they shared was their rich engagement with notions of intersectionality in foregrounding critical questions in relation to disability. Disability was never singular in their work. Disability is always positioned as empirically engaged, conceptually complex, and theoretically propelling. Across their collective scholarship for many years, each of the authors had also been developing a nuanced engagement with core scholarly questions that centred disability’s relationality to the colonialities of rule in which they, or their work, was located. Sometimes, it was in settler societies, other times, in post-colonial contexts, and others were situated within the assemblages of the colonial that were infused across the enmeshment of structures of rule that mapped across space, place, and Bodyminds, often at a single site, especially in settler colonial contexts. Combined, each of the contributors’ work had demarcated themselves from dominant singular disability narratives that, perhaps, have come to represent ‘the disability experience’ as universal. The contributors’ work aligned with our own epistemic engagements that situated the site of disability in the manifold colonialities of rule that mapped back across time yet, maintained their relevance within the contingencies of the current moment. As editors, as DOI: 10.4324/9781003280422-1

2 Robel Afeworki Abay and Karen Soldatić part of these discussions, we decided to coin this dynamic quite specifically as Intersectional Colonialities. Bringing intersectionality and coloniality into dialogue

While intersectionality and the study of the colonialities of rule have emerged as transdisciplinary academic fields in their own right in the last three decades, despite several similarities shared by some general tenants of these strands of critical thought and engaged practice (e.g., critical analysis of structural relationships of power, domination, dispossession, death, expropriation, exploitation, and extraction), there is now a small body of research that has sought to examine critical questions of disability as complex, emerging, entrenching, and enveloping the assemblage of dynamics across colonial regimes, systems, and institutions of rule. Questions in relation to disabled identities, individual, collective, and in solidarity are created, reproduced, resist, contest, collectivise, and mobilisation in such contexts and are critical in geopolitical landscapes that are enmeshed with longstanding practices of colonial rule. As articulated in depth by the book’s contributors, Bodyminds are the critical sites for the realisation of colonialities of rule across time, either as oppressor, collaborator, or resistor. Embodied practices of resistance mobilised by local peoples with each new incarnation and materialisation of colonial power are structurally enmeshed and rarely singular in their claims of identify, justice, or practices of solidarity (see Afeworki Abay and Soldatic, 2024). It has been well established across a broad spectrum of empirical material that the colonialities of rule are deeply implicated with ontoformative entanglements for those Bodyminds subjugated to its layers, structures, institutions, and regimes of power. Scholars of more than a decade ago, such as Helen Meekosha (2011), have well-traversed disability’s production and reproduction as a visible marker of the invisibility of colonialities of rule. Within settler colonial contexts, these are too frequently ‘normalised’ through public health discourses that focus on the severe health disparities experienced by large proportions of globally marginalised and fringe groups (e.g., disabled people, refugees, Black and People of colour, Indigenous and First Nations, minority groups, women, and people living in severe poverty) across the global South, East, and even in the global North, particularly for Indigenous, First Nations, and minority communities (see Soldatic and Grech, 2022). More explicitly, this is directly seen with the intensification of state militarisation, particularly in settler colonial contexts where colonising states engage in military practices that deliberately maim, disassemble, and dispossess local indigenous peoples and First Nations communities to steal lands, waters, and social infrastructures for settlers (see Puar, 2017). Interestingly, a growing number of scholars are seeking to address such concerns within their own fields of social categorisation, including but not limited to sexuality and gender diversity, race, and religion from an Indigenous

Introduction

3

Standpoint. This group of scholars has begun to point out that, combined, the spectrum of theories of colonialism and the colonialities of rule in collaboration with intersectionality would prove to be an enormously fruitful scholarly practice to overcome the existing epistemic limitations of current strands within either field. As critical disability scholars, we concur with these arguments. The contributors within this volume start from a theoretical framework of intersectionality to show how disability is situated within understanding how multiple social identities such as race, gender, sexual orientation, SES, and disability intersect at the micro level of individual experience to reflect interlocking systems of privilege and oppression (i.e., disablism, racism, sexism, heterosexism, transphobia, classism) at the macro social-structural level. (Bowleg, 2012, p. 1267) As Day (this volume, Chapter 4) articulates, disability is one of the few social categories that make settler colonial violence and its continuities explicit. Importantly, questions in relation to having an anti-colonial rather than decolonial reflexive consciousness are critical in anti-colonial practices of resistance and mobilisation. To concur with Day, we, therefore, need to explicitly demarcate across and between the distinct, yet frequently enmeshed, regimes of colonial rule – post, neo, settler – so that as scholars, activists, and advocates, we are mapping and navigating its embeddedness, continuities, and even potential newness alongside the counter practices of embodied resistance, collective and individual, the post, de- or anti-colonial of struggle. Scholarship on colonisation and demarcating between each of its regimes of rule, would be enormously fruitful to distil various forms of epistemic violence as well as address the structural inequalities of post/ settler/neo colonial geopolitics that are embedded in the ongoing reproduction of colonial discourse of Otherness (Quijano, 2000, 2007; Mignolo, 2000, 2011, 2013). Through examining the intersectionalities of the colonialities of rule as structures that overlap, as they are embodied across, within, and through the marking and making of time, space, and Bodyminds, including intergenerationally, disability’s embodied complexity can be disentangled across colonial regimes of social categorisation and containment. Intersectional Colonialities, as captured by the contributors of this volume, thus focuses on contemporary anti-colonial battlegrounds in divergent geopolitical landscapes while also situating contemporary moments, events, structures, and practices within continuities and historiographies of colonial regimes of rule, governance, and governing. Intersectional Colonialities is thus layered beyond practices of identity and identity formation, collectivisation, and solidarity. It entails mapping embodied positionalities, identities, and social categorisations and how they intersect with the temporal relationalities and logics of the colonial – the intertwining of history, the contemporary alongside its contingencies and

4 Robel Afeworki Abay and Karen Soldatić regularities. Intersectional Colonialities, as demonstrated by each of the contributors within this volume, opens out the possibilities of critically engaging with core issues of disability as we emerge into new colonial landscapes and collective repertories of resistance, contestation, and mobilisation for global disability justice and solidarity. Book structure The structure of the book aims to bring together the theoretical with the empirical, the ontological with the epistemic, and the conceptual with the embodied in everyday life. The flow between and across chapters illustrate the dynamism of each of the contributors, the divergence and convergence across the fields of critically engaged global disability studies, and the deep complexity of disabled embodied subjectivity once the colonialities of rule and regimes of power are made explicit. This is best captured with the opening chapter by Oche Onazi – Decolonising disability studies: Conceptualising disability justice from an African community ideal. Onazi’s engaged analysis explores what it means to decolonise disability studies when grounding the principles of disability justice within African philosophical thought. Onazi’s opening chapter also challenges readers to think through how disability justice can be realised in practice and everyday life, practice, and institutions. Onazi’s nuanced engagement is followed by a chapter from Nirmala Erevelles and Robel Afeworki Abay. As the title suggests, Racialized and gendered Ableism: The epistemic erasure and epistemic labour of disability in transnational contexts, Erevelles and Afeworki Abay draw out the dialectical politics of the institutionalised structures and discursive practices of transnational capitalism and how these are imbricated in the constitution of disabled (post) colonial subjectivities located at the intersections of race, class, gender, and sexuality. This chapter provides a framework to think through the role of intersectionality in exposing and confronting epistemic injustice and violence, especially as it pertains to disabled Black, Indigenous, and People of Colour (BIPoC), a theme continued in Chapter 3, TransLatinidades, disability and decoloniality: Diasporic and Global South LatDisCrit lessons from Central America, by Alexis Padilla, focused on Central America. In this third chapter, Padilla examines questions of decolonial intersectionality as embodied and racialised understandings of trans-Latinidades within the Central American region. Padilla’s foci on the experiences of disabled immigrants from El Salvador drive insightful perspectives of the emancipatory possibilities when examining disability experiences and structures of disablement from a conjoint lens of LatDisCrit and transmodernism. Madi Day’s chapter, Degeneracy and replacement: Reproducing white settler anxieties in the 21st century, maps out the continuities of eugenics in the settler colonial context of what is now called ‘Australia’. Drawing upon anti-colonial theories, Day’s work illustrates the centrality of eugenics to not

Introduction

5

only justify racist ableist theories of Indigenous population replacement with settlers but also the pivotal role of controlling Indigenous sexuality and gendered diversity to contain Indigenous reproduction as it is constructed through discourses of degeneracy, disease, and disability. Madi Day’s piece unsettles settler colonial narratives of ‘Australia’ to illustrate settler colonial genocidal intentions to wipe out First Nations peoples to build a white masculine ableist settler colonial state, focused on fit white ‘productive’ Bodyminds as part of the settler nation-building enterprise. Day’s chapter encourages us to deeply reflect upon the continuities of embedded colonialities of rule within settler colonial contexts that persist with the reproduction of white ableist heteronormative structures of settler colonial power. In Chapter 5, Disabled Romani people in Germany: Learning from the notion of indigeneity in disability studies outside of Settler-Colonial states, Yvonne Wechuli and Robel Afeworki Abay interrogate the concept of ‘indigeneity’ to examine the opportunities it may provide, yet many will contest, to critically engage with core questions of justice for Disabled Romani people in Germany and their longstanding experiences of oppression and exclusion. Wechuli and Afeworki Abay’s chapter will be particularly interesting to readers engaging with empirical questions exploring issues of justice for minority, racialised disabled communities outside of settler colonial states. Chapter 6, Africa and the epistemic normativity of disability, by Elvis Imafidon and Kenneth Uyi Abudu, follows a similar theme that critically considers the normative constructions of disability when navigating the decolonial through an inclusive intersectional prism grounded in the geopolitics of Sub-Saharan Africa. This chapter encourages readers to pay greater attention to the social, historical, and philosophical constructions of disability that emerge from different spaces and places to both improve localised understandings of disability and to transform the everyday lifeworlds of people with disabilities. Robel Afeworki Abay and Maria Berghs explore the continuity of colonial power structures in Chapter 7, Impossible working lives and disabled Bodyminds during racialised capitalism: Perspectives from Germany and the United Kingdom, through a comparative analysis of the racialised labour market in Germany and the United Kingdom. This chapter opens out materialist analytical frames through engaging with the worlds of work and employment, as everyday political and social structures, of impossibility for disabled BIPoC in either context. Afeworki Abay’s and Berghs’ descriptive analysis of Black disabled people’s experiences in Germany and the United Kingdom, particularly within the COVID-19 pandemic period. In Chapter 8, Stigma as a structure of disablement: Towards collective postcolonial justice, Valérie Grand’Maison and Karen Soldatić expose the coconstitution of settler colonialism, gendered violence, and disability through the creation of composite stories, drawing upon media representations and narratives of violence against disabled women, Black women, women of Colour, sexually, and gender-diverse women. This novel methodological approach to analyse the gendered racialised able-bodied colonialities of violence

6 Robel Afeworki Abay and Karen Soldatić provides the tools to reveal the continual stigmatisation of Bodyminds deemed outside the boundaries, borders, and polity of two settler colonial nation states – Canada and Australia. In turn, Grand’Maison and Soldatić trace how settler colonial violent processes of elimination, expropriation, and exploitation are gendered and gendering, both creating impairments and biopolitical meanings of disability. The next chapter by M. Lynn Rose engages with rich first-hand empirical material and considerations. Rose’s chapter, Coloniality, disability, and the family in Kurdistan-Iraq, maps out the complexity of navigating institutional ableism for Kurdish community members living with disability in Northern Iraq. Most significantly, Rose’s empirical work brings to the fore the tensions of Kurdish extended family systems and how this can be positioned as and more reflective of the dynamics of ‘micro-colonial’ systems. Interestingly, and as outlined by the chapter to follow from Sharin Shajahan Naomi on mothers in children with autism in Bangladesh, patriarchy continues to operate as a highly prescriptive relationship of gendered power, particularly in close-knit and extended families when it comes to governing disability, belonging, and participation even at the household level. Naomi expands upon this further in Chapter 10, Raising children with autism in a patriarchal society of a new liberal state: Experiences of mothers of autistic children in Bangladesh where she considers patriarchal family systems in governing the mothers of autistic children. Interestingly, and not unlike the chapter from Grand’Maison and Soldatić, both Rose and Naomi reflect upon the powerful role stigma plays towards maintaining disabling conditions, structures, and institutional practices with highly gendered effects. In Chapter 11, Disability discourse and Muslim student organisations in Malang, Indonesia, Slamet Thohari, Titi Fitrianita, and Ucca Arawindha discuss the potentiality, possibilities, and limitations of working within religious organisations, even those more radical student movement organisations, that are agitating for the enactment of social democratic structures and practices in former colonial contexts. Writing from Indonesia, Thohari and colleagues provide a compelling contribution examining the role of the Islamic student movements in promoting disability justice and inclusion within the university context. Drawing upon first-hand empirical material, their work is suggestive of progressive disability dialogues occurring on the ground in former authoritarian states. Significantly, this chapter gives specific insights as to how localised social movements are uniquely positioned to foster radical democratic disability justice despite their historical lack of engagement with the disability movement. Nicola Burns, in Chapter 12, Migration studies and disability studies: Colonial engagements past, present and future, demonstrates the need for migration scholars to critically engage with disability studies so that migration can be understood as an ontoformative process. Burns’ reflections reiterate the need to centre disabled migrants’ narratives and experiences of migration to shore up greater nuance in the analysis of global movement of people. Significantly,

Introduction

7

through drawing upon decolonial scholarship from within a disability studies frame, Burns’ chapter delineates the numerous ableist assumptions within migration studies that continue to render disability invisible. Rebecca Yeo and Robel Afeworki Abay continue with this conversation in Chapter 13, Colonial and ableist constructions of ‘vulnerability’: The impact of restrictive asylum conditions on disabled people in the United Kingdom and Germany. Taking a cross-national comparative approach, Yeo and Afeworki Abay aim to establish intersectional and postcolonial perspectives on the concept of vulnerability. Combined, both pieces highlight the importance of critical and decolonial interrogations of seemingly progressive concepts that, in actuality, mask systemic restrictions in relation to disability and disabled people’s mobility and movement across borders. Opening the next set of chapters is the exemplary work of decolonial disability scholar, Xuan Thuy Nguyen. In Chapter 14, Towards a decolonial approach to disability as knowledge and praxis: Unsettling the ‘colonial’ and re-imagining research as spaces of struggles, Nguyen offers an engaged and nuanced decolonial critique of the intergenerational impacts of United States imperialism on the lived experiences of disabled women and girls in Vietnam. Through drawing upon the rich life narratives of her collaborators who have been impacted by the effects of the US war in Vietnam, Nguyen illuminates the ways in which the collateral of war is embodied, navigated, and endured across generations. Nguyen and her collaborators’ narratives reveal the agential practices of localised healing among women and girls with disabilities and the role of decolonial methodological approaches in facilitating such localised approaches. In Chapter 15, Reflecting on the How Questions: Using intersectional methods for policy changes, Deborah Stienstra reflects on the process of using intersectional methods within policy-related research in Canada. It encourages researchers to critically engage with the inherent power dynamics within the research process and resulting tensions that certainly many reserachers experience, but few discuss. The idea of ‘intersectional practice’ illuminates the potential of this framework to inform not just ways of thinking, but also ways of doing that disrupt the power relations inherent in research and policy-development processes. Robel Afeworki Abay and Hella von Unger close the book on examining a similar approach of participatory research in Chapter 16, Cultural humility in participatory research: Debunking the myth of ‘hard to reach’ groups, where they seek to challenge the myth of marginalised communities as ‘hard to reach’ research groups. This final chapter reiterates the importance of working in collaboration with our research partners, as first discussed by Nguyen, and utilising social categories that resonate within the localised context. Concluding remarks We hope that, combined, this set of chapters offers disability scholars, activists, and advocates an opportunity to critically reflect upon and engage

8 Robel Afeworki Abay and Karen Soldatić with the anti, de, post, neo, settler regimes of the colonialities of rule – what they may mean for disabled people and their struggles for intersectional justice within their everyday lifeworlds on the ground. Disability scholarship has, generally, not taken up the nuance in colonial scholarship that demarcates and distils the unique forms of rule, governance, and governing within these colonial regimes – the colonial, the settled colonial state, the neo colonial state – to interrogate disability and its implications for peoples, communities, and nations, who continue to remain subjugated to the colonialities of power, violence, and dispossession. Issues of gender and sexuality diversity, Indigeneity, First Nations and minoritisation, race, ethnicity, and religion, as demonstrated by all the contributors of this volume, are critical to a radical disability scholarship that is necessary to sustain global movement mobilisation for justice and solidarity. The limited critical engagement with theories of the colonial and its transnational and geopolitical tentacles of power could suggest that such disability scholarship risks ‘undoing’ the very possibilities of identifying and mapping the signification of disability in relation to the vestiges of colonial power. Leading intersectional theorists, such as Collins and Bilge, have argued that distiling the inter-relationship of such colonial structures and their continuities is crucial to understand the ways such social categories do not act independently but are instead not only interrelated but are deeply intertwined across contexts, sites, and time: Intersectionality’s core ideas of social inequality, power, relationality, social context, complexity, and social justice formed within the context of social movements that faced the crises of their times, primarily, the challenge of colonialism, racism, sexism, militarism, and capitalist exploitation (Collins and Bilge, 2016, p. 6). Finally, as co-editors of this volume, it is our shared view that this book, with its international collection of chapters, will rigorously demarcate the different structures and practices of colonialism and colonialities of rule as historically defined – post/neo/anti/de/settler colonialism and demonstrate the significance of our theoretical approach of Intersectional Colonialities to addressing these unique structures, regimes, and practices of power. Finally, after reflecting upon all of the chapters, we have decided against writing a ‘conclusion’ as the dynamic of reading the chapters in dialogue with each other demonstrate that this global project is now only just beginning. The collective body of scholarship contained herein thus anticipates further global development of our theoretical imaginaries that underpin Intersectional Colonialities and the possibilities, multiplicities, and signification of shifting disability intersectional positionalities with other sources of oppression based on race, indigeneity, class, gender, ethnicity, and sexuality with the dynamics of global power.

Introduction

9

References Afeworki Abay, R., and Soldatic, K. (2024) ‘The coloniality of disability: Analyzing intersectional colonialities and subaltern resistance’, in T. Chataika and D. Goodley (eds.) The handbook of postcolonial disability studies. London: Routledge, pp. 15–23. Bowleg, L. (2012) ‘The Problem with the Phrase Women and Minorities: Intersectionality – an Important Theoretical Framework for Public Health’, American Journal of Public Health, 102(7), pp. 1267–1273. Collins, P. H., and Bilge, S. (2016) Intersectionality. Cambridge/Malden: Polity Press. Meekosha, H. (2011) ‘Decolonising Disability: Thinking and Acting Globally’, Disability & Society, 26(1), pp. 667–682. Mignolo, W. D. (2000) ‘The Many Faces of Cosmo-polis: Border Thinking and Critical Cosmopolitanism’, Public Culture, 12(3), pp. 721–748. Mignolo, W. D. (2011) ‘Geopolitics of Sensing and Knowing: On (de)coloniality, Border Thinking and Epistemic Disobedience’, Postcolonial Studies, 14(3), pp. 273–283. Mignolo, W. D. (2013) Local histories/global designs: Coloniality, subaltern knowledges, and border thinking. Princeton, NJ: Princeton University Press. Puar, J. K. (2017) The right to maim: Debility, capacity, disability. Durham: Duke University Press. Quijano, A. (2000) ‘Coloniality of Power and Eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Quijano, A. (2007) ‘Coloniality and Modernity/Rationality’, Cultural Studies, 21(2), pp. 168–178. Soldatic, K., and Grech, S. (2022) ‘Unchaining Disability Law: Global Considerations, Limitations and Possibilities in the Global South and East’, AJIL Unbound, 116, doi: 10.1017/aju.2022.11.

1

Decolonising disability studies Conceptualising disability justice from an African community ideal Oche Onazi

Introduction The field of disability studies is inattentive to indigenous scholarly perspectives, interests, and concerns of people in the Global South. Decolonialisation helps unravel the potential of neglected Southern forms of knowledge, including how they shape lived experiences. Although decolonialisation has generated some interest in disability studies, few writers have considered what disability justice would look like from non-Western indigenous scholarly perspectives. Therefore, my aim in this chapter is to draw from the literature on African philosophy to conceptualise disability justice from a relational community ideal. Although it has an unsettled meaning, throughout this chapter, the term African philosophy will refer to an academic discipline with evolving literature, including ‘… codes, standards, recognized practitioners, and customs’ (Janz, 2007, p. 690). This is because I seek to draw from arguably the most compelling literature in African philosophy on the concept of community. This is not an easy task as it entails covering new ground in relation to disability studies through the decolonial lens. Primarily responsible for this is that daily struggles of most African people with disabilities1 have not been sufficiently captured by the literature on community. Despite the lack of sufficient attention to disability in African philosophy, for reasons outlined below, I draw from it to offer an obligation-based conception of disability justice as an alternative to dominant human-rights-based perspectives. Disability justice conceptually frames multiple struggles against exclusion by people with disabilities. In its older and more dominant connotation, disability justice – a term with antecedents in the disability rights movement – commonly refers to human rights claims of people with disabilities. Disability justice is conceived as a question of individual autonomy and equality requiring the application of existing human rights norms to people with disabilities. A second, but less evident, practical approach is influenced by the literature on justice in the Western tradition of legal and political philosophy, which responds to the omission of disability in foundational writings in this field. This approach unifies concepts of disability and justice, which until this point operated separately. Disability was understood as a misfortune or DOI: 10.4324/9781003280422-2

Decolonising disability studies

11

medical condition, unconnected to justice. In contrast, justice – largely shaped by the social contract tradition – referred (and still refers) to the fair allocation of public goods through a hypothetical and mutually beneficial agreement, something that takes people with disabilities for granted. As with older perceptions and prejudices about people with disabilities, such views are no longer dominant in the literature. Disability justice now, in various ways (i.e., contractarianism, utilitarianism, and egalitarianism among other traditions), responds to the discriminatory treatment of people with disabilities in moral, social, economic, cultural, and political domains. Despite this, both disability and justice are portrayed abstractly and universally, making it uncertain how the distinctiveness of non-Western societies is considered. As a set of abstract values and principles, justice is premised on universally shared values common place in Western and nonWestern societies alike. As rich as it may be (see, for example, Dworkin, 1981; Nussbaum, 2006; Rawls, 1971; Stein, 2006), the literature does not consider what Africans (and in general, people in the Global South) think about disability and justice as well as the transformative effect these reflections may have on these concepts and lived experiences. Like disability studies, disability justice in legal and political philosophy has not been an allencompassing dialogue embracing intellectual perspectives from across the world (Flikschuh, 2014; Onazi, 2020, pp. 81–82). It must be appreciated that disability injustices have not only prevailed because of the inadequacy of leading legal and political concepts, but also because of their lack of intellectual diversity, rigour, and nuance (Onazi, 2020, p. 12). Granted that the responsibility for shedding light on African concepts of justice and disability should rest on practitioners of African indigenous forms of thought, the neglect of disability justice can equally be attributed to the historic prejudice about the existence of African knowledge, which is itself a legacy of the Enlightenment and colonialism (Janz, 2009, p. 24; Onazi, 2020, p. 13). The argument in the chapter is presented as follows. In the next section, I introduce the debate about decolonising disability studies. I then consider the African relational community ideal and explain how obligations are conventionally defined. Subsequently, I discuss limitations of these obligations and explore how they can be overcome to ground disability justice. Next, I consider the application of the obligation-based account of disability justice, which is the most difficult and weakest aspect of my argument. Nevertheless, I outline some possibilities, but these are by no means comprehensive or without limitations. Part of the problem is that the precise mechanism for the practical implementation of African conceptions of obligations remains a considerable challenge. The problem is complex. It points to the broader difficulty of applying non-Western indigenous concepts beyond their original and familiar settings. After reflecting on possible institutional options, the chapter concludes thereafter summarising my arguments and suggestions with moving forward in furthering these ideas.

12

Oche Onazi

Decolonising disability studies Decolonialisation has not only meant the end of colonialism, but also that political independence is not exhaustive of how to think about colonisation. Decolonialisation captures many forms of exclusion that remain legacies of colonialism, but also novel exclusions (i.e., neo-colonialisms) that are not reduced to it. Decolonisation mediates between the historical fact of colonisation and the novel political, economic, social, and cultural forms of domination today. It amplifies the uninterrupted nature of the previous colonial logics and order, which make the need for renewed projects of decolonisation an inescapable reality. Decolonialisation – or alternatively ‘decoloniality’ (Maldonado-Torres, 2007; Mignolo and Walsh, 2018; Quijano, 2000) – demonstrates the uninterrupted nature of colonialism and conceptually grounds new liberation projects. Therefore, decolonialisation or decoloniality is both an analytical and practical framework, which aims to unravel ‘… other modes of being, thinking, knowing, sensing and living; that is, an otherwise in plural’ (Mignolo and Walsh, 2018, p. 81). Part of the objective is to contest the dominance of Western rationality in diverse walks of life and to provide a framework for alternative ways of existence, analysis, thought, and practice (Mignolo and Walsh, 2018, p. 17). At the core of decolonialisation is the question of epistemological justice (Grosfoguel, 2007; Santos, 2018) amongst many things. Epistemological decolonialisation seeks to revive or restore the potential of marginalised indigenous forms of knowledge of non-Western people, especially how these might impact lived experiences. It enables the recognition of non-Western scholarly thinking, activism, and practical emancipatory projects. Epistemological decolonialisation, as defined by Ndlovu-Gatsheni (2018, p. 3), is a struggle for ‘epistemic freedom’, that is, ‘the right to think, theorize, interpret the world, develop own methodologies and write from where one is located and unencumbered by Eurocentrism’. Epistemological decolonialisation is critical of Western thought, but not totally opposed to it or certain versions of it (Mignolo and Walsh, 2018, p. 7). Like ‘Eurocentric critiques of Eurocentrism’ (Mignolo and Walsh, 2018, p. 3), epistemological decolonialisation is amenable to critical engagement with Western thought to reveal, disrupt, denaturalise, and transcend oppressive aspects of it. Some writers among others (Wiredu, 1996, pp. 224–225) may be excused for assuming that epistemological decolonialisation can help recover the authenticity of Southern indigenous thought (Janz, 2009, pp. 121–130). However, it is naïve to think that Southern thought has been shielded from colonial or postcolonial forces (Janz, 2009, p. 23), so it is more promising to consider epistemological decolonialisation as an attempt to expose and undo oppressive structures of both the colonised and coloniser (Santos, 2018, p. 108). Although the literature on decolonising disability studies is not voluminous, some writers have considered its relevance to the field. Meekosha (2011), for example, describes disability studies as a form of scholarly

Decolonising disability studies

13

colonialism because it is exclusively drawn from epistemologies of the Global North (see also Grech, 2015), presented as a form of universalism, and fails to reflect experiences of most disabled people in the Global South (Meekosha, 2011, p. 668; Meekosha and Soldatic, 2011). Echoing the neglect of Southern epistemologies, Grech (2015) argues that by overlooking terms of colonialism or coloniality, the literature on disability studies is an inadequate medium to grasp disability injustices in the Global South. It is a homogenised, de-contextualised, and de-historicised discourse, which simplifies and generalises the lives of people with disabilities in the Global South (p. 6). Although the word colonialism seldomly features in the literature, it is used mainly as a descriptive ‘metaphor’ (Grech, 2015, p. 7), which is insensitive of or unable to describe the oppression, marginalisation, and exclusion of disabled people in the Global South. For this reason, decolonialisation is important to subvert the dominance of Western discourses and unlock the possibility of diverse Southern disability discourses (Grech and Soldatic, 2015). Another important contribution is made by Soldatic and Grech (2014), who problematise the social model of disability, which defines a disability as a natural aspect of human diversity,2 thereby making it an unsuitable conceptual tool for grasping struggles against historical and contemporary injustices in the Global South. In distinguishing between impairments and disabilities, the social model of disability avoids making positive or negative judgements about ‘disabilities’, thereby ‘relegating pain, the embodied experience and the way the social is lived in and through the body …’ (see Connell, 2011; Maybee, 2019, 2017; Soldatic and Grech, 2014). As compelling as the literature may be, it provides relatively few examples of what disability studies – or specific concepts and aspects of it – should look like from Southern forms of knowledge and being in the world. Most of the research has been in the form of critique and, therefore, has not sufficiently offered examples of how Southern perspectives impact on disability studies or certain aspects of it. As much as critiques are important in advancing the decolonialisation agenda, it is equally, if not more, important to understand how Southern concepts or forms of knowledge can transform disability studies. It must be appreciated that epistemological decolonialisation is not an easy question. It is not a question of simply identifying and translating non-Western concepts into Western institutional frameworks. As mentioned in the introduction, the precise mechanism for the practical implementation of non-Western concepts remains challenging for decolonialisation. Nevertheless, I turn to African philosophy to explore what decolonialisation would look like from an African community ideal and, thereafter, outline some ideas about its practical realisation. The African relational community ideal Africa’s gift to world culture must be in the realm of Human Relationships (Kaunda and Morris, 1966, p. 22).

14

Oche Onazi

Far from being the only or dominant conception of community in the literature on African philosophy, the relational version is arguably the most inclusive one. The relational conception of community refers to ethical and horizontal relationships between people who may or may not be its members. Here, the term community does not refer to the property of a group or a metaphysical entity, but rather refers to a relational ideal created by relationships (Metz, 2015, 2012). Thus, the term community is equivalent to human relationships, which are not only fundamental to it, but the primary means of constituting and defining what the concept of ‘community’ means. In other words, human relationships are the core characteristic of this conception of community as well as the source of its meaning and other properties. What is novel about this idea of community ‘is certainly its directness as it neither exists as a metaphysical entity, nor has an existence that is either separate or takes precedence over or supersedes the existence of its members’ (Onazi, 2020, p. 17). Drucilla Cornell (2014) powerfully captures the attractiveness of the relational conception of community by describing it as something ‘… that is not outside us, something “over there”, but is inscribed in us’ (Cornell, 2014, p. 161). Cornell importantly calls us to appreciate that community does not exist outside human relationships. Therefore, human relationships are not only key to the formation of community, but also what gives it its meaning and fundamental character. In the literature, the Southern African indigenous concept of ubuntu has arguably been the most authoritative written account of the relational community ideal. Although ubuntu is notoriously difficult to define as it has no precise English language translation, it roughly translates into an ethical or normative principle in which individuals constitute and are constituted by a community formed by ethical and horizontal interactions between people. ubuntu, again to borrow a phrase from Cornell (2005), refers to ‘an interactive ethic, or ontic orientation in which who and how we can be as human beings is always shaped in our interaction with each other’ (Cornell, 2005, p. 205). What is attractive and indeed original about ubuntu is not only that relationships between individuals are what constitutes community, but also that it is the community that in turn constitutes individuals. Accordingly, personhood is not only different from and superior to humanhood but is only achieved through relationships in the form of mutual reciprocal obligations between individuals (Onazi, 2020, p. 19). Obligations are therefore both a central and compelling feature of the relational community ideal but, at the same time, as I show below, a characteristic that presents obstacles for people with disabilities. Obligations in African indigenous thought

Obligations, which commonly refer to bonds or ties between people that intersect personal and institutional relations (Veitch, 2021, p. 8, 2017, p. 416), are often synonymous for duties and, seldomly, responsibilities

Decolonising disability studies

15

(Gyekye, 1997, p. 66) in the literature on African philosophy. Obligations are not voluntary or supererogatory, but compulsory or binding, undertakings. Obligations are ethical, moral, and normative in nature requiring individuals to carry out various other-regarding forms of conduct. This is partly because obligations have a perfectionist dimension (Metz and Gaie, 2010, p. 275), which underscores the importance of virtue and excellence (Menkiti, 1984, p. 171) as a requirement of community life. Therefore, obligations commonly refer to forms of mutual aid and behavioural aptitudes of sympathy, benevolence, compassion, and friendship to love and care for the well-being of others, which also make them undeniably altruistic in orientation. Although seldomly discussed in legal terms, obligations command a degree of stringency equivalent to the binding nature of law. Another important feature of obligations, which may also suggest that they are non-legal in nature, is that they are not correlates of rights (Van der Walt, 2018), as they exist as an independent or stand-alone category. What is undoubtedly the most important characteristic of obligations in African philosophy is their significance to the formation of community, which in turn defines what it means to be a person. Personhood is a distinctive attribute of those who live up to their obligations to others. Personhood is established by community, a type of community that is constituted by mutual reciprocal obligations (Sanders, 2007; Stuit, 2016, p. 15; Tutu, 1999, p. 67). It is for this reason that obligations are implicitly and explicitly referred to in mutual reciprocal terms. In the process of becoming a person, an individual must discharge his/her obligations to others who in turn discharge their corresponding obligations to the individual as members of a community or fellow person (Gyekye, 1997, p. 67; Justice Ncobo in Bhe, para 163; Menkiti, 1984, p. 176). Once again, Cornell’s seminal work provides valuable insights into the reciprocal nature of obligations when she says: … what makes us human is not just the reality of our social connectedness, but the way in which each of us lives up to the obligations to those who have supported us, and to the broader community in which we live. But this living up to the obligation is not altruism or sacrifice, because the other side of it is that others must live up to their obligation to us […] (Cornell, 2014, p. 69). The demanding nature of obligations is evident from the above comments, which is perhaps why Cornell objects to their altruistic nature. Cornell is clearly alluding to the mandatory or indeed non-supererogatory character of obligations, which make them binding on all individuals. Everyone must contribute to the flourishing of each other and/or to the community. Cornell, and generally the African philosophical literature on community, makes no reference to people with disabilities. Although obligations have a perfectionist orientation (Metz and Gaie, 2010, p. 275), which makes them other-regarding,

16

Oche Onazi

it is doubtful if they include people with disabilities since they are mutual reciprocal in nature. Except for infants and children, the literature is generally silent about the status of those on the other side of the obligations of others. Infants and children are considered persons-in-waiting, therefore potentially within the scope of obligations of others (Gyekye, 1997, p. 50). Since obligations are articulated in an active or performative and able-bodied way, they are likely to exclude people with disabilities, especially people with cognitive and extreme physical disabilities, which is once more a by-product of their mutual reciprocal characteristic. Moreover, given that the literature distinguishes between persons and human beings, ranking the former ahead of the latter, individuals – like some people with disabilities – who are unable to discharge their obligations to others are unlikely to count as persons. People with disabilities, especially people with cognitive and extreme disabilities, can only rank as human beings, which is a lower or inferior moral category that makes them less worthy of moral consideration (Metz, 2015, p. 187). In pointing out these exclusionary features of obligations in African philosophy, I am careful not to generalise across the immense variety and differences that the term ‘disability’ invokes. It is certainly not a suggestion that people with disabilities can only be passive recipients of the obligations of others. The ability to perform an obligation will depend on the disability in question as well as the way in which the obligation is concretely institutionalised (Onazi, 2020, p. 20). Certain disabilities would present more obstacles than others just as certain obligations would be more demanding than others, especially if this is understood in terms of the environmental barriers that might present obstacles to people with disabilities (Onazi, 2020, p. 20). Obligations to people with disabilities

A more promising alternative, which is inclusive to people with disabilities, rests on understanding obligations as products of a fundamentally altruistic and moral-based civic order, which elevates the care or concern for others as the highest value (Bell, 2002, p. 59; Gyekye, 1997, p. 70; Masolo, 2010). On this reading, obligations are fundamentally altruistic in nature and encourage individuals – especially those with the ability – to care for and show concern for the more vulnerable members of society. In elaborating on this interpretation of obligations, I turn to the seminal work of Kwame Gyekye (1997), whose work is unrivalled in the literature in terms of its compelling insights on obligations in African philosophy. Gyekye suggests that obligations are products of an ‘altruistically freighted morality’ (Gyekye, 1997 p. 67), which require: … each individual to demonstrate concern for the interests of others. The ethical values of compassion, solidarity, reciprocity, cooperation, interdependence, and social well-being, which are counted among the

Decolonising disability studies

17

principles of the communitarian morality, primarily impose duties on the individual with respect to the community and its members (Gyekye, 2010). As products of an altruistically freighted morality, obligations are defined as ‘a caring attitude or conduct that one feels one ought to adopt with respect to the well-being of another person or other persons’ (Gyekye, 1997, p. 66; for similarities, see Bell, 2002, p. 59; Matolino and Kwindingwi, 2010, p. 199; Metz, 2015, p. 189). Gyekye’s definition can be sub-divided into three core obligations – ‘the obligation to help others in distress, … the obligation to show concern for the needs and welfare of others, and … the obligation not to harm others’ (Gyekye, 1997, p. 66). Given that the obligations above are fundamentally other-regarding in nature, it is not difficult to appreciate how they can contribute to addressing exclusions or injustices suffered by arguably a majority of the 80 million people with disabilities in Africa. Another unique feature of obligations in African philosophy, which makes them appropriate for disability justice, is their stringent and binding nature. As Gyekye further argues, no obligations that ought to be performed for the purposes of cooperative living and human well-being should be considered supererogatory or morally optional (Gyekye, 1997, p. 75). African communitarian philosophy has no distinction between binding moral obligations and supererogatory acts (Gyekye, 1997, pp. 71–72). Though the African model of obligations seems like voluntary undertakings, they are stringent and attract moral sanctions on those who fail to live up to their duties (Gyekye, 1997, pp. 71–72). The binding character of obligations together with their altruistic foundations gives rise to a scepticism or even rejection of rightsbased conceptions of justice. Apart from asserting the superiority of the altruistic moral order over the rights-based one, doubts are expressed about whether values of compassion and love among others can be cultivated through a liberal and individualistic justice model. Although this rights-based scepticism fails to consider whether justice can be conceptualised without rights, the significance of this criticism is a call to understand that obligations are not correlates of rights (Menkiti, 1984; Molefe, 2019). Although Gyekye – like other writers – presupposes obligations in mutual reciprocal terms, what sets his work apart is its recognition of their underlying altruistic foundations. My argument hinges on treating altruism more centrally than it appears in Gyekye’s work and the literature. This may be appreciated by paying closer scrutiny to the core obligations indicated above. Obligations to help others in distress, to show concern for the needs and welfare of others, and not to harm others’ (Gyekye, 1997, p. 66) challenge conventional assumptions about mutuality and reciprocity. In such circumstances, it would be odd to speak of these obligations in mutual reciprocal terms. Altruistic obligations certainly do not presuppose symmetry, but asymmetry. It is not difficult to appreciate that ‘a person who

18

Oche Onazi

is unable to reciprocate an obligation is likely one who requires the compassion, care, and concern of others’ (Onazi, 2022). Altruism has a further advantage of placing obligation-bearers (i.e., those who are capable or in positions of authority) under close scrutiny. Given the nonsupererogatory nature of obligations, obligation-bearers are placed under a stringent and binding commitment to assist obligation-beneficiaries (i.e., those in distress or in need). An obligation-bearer does not discharge an obligation because he/she expects it will be reciprocated by an obligationbeneficiary. It is not that reciprocity is negated altogether, but rather that reciprocity is never mutual. To insist on mutuality is to misunderstand the heterogeneous nature of communities, which are often constituted by members with differences in human condition, need, talents, and abilities. Reciprocity is at best asymmetrical or indirect, something that may happen later in life, or in a different context of distress and need, or not happen at all. Reciprocity exists within a generalised system of asymmetrical obligations, which ensures that obligation-beneficiaries will always have their needs met by obligation-bearers, who will always have the broadest of shoulders. In discussing ubuntu, Stuit (2016) makes a similar point in the passage below: To help, give, from this perspective, is thus not based on the assumption that the person giving will be reciprocated, but emphatically hinges on the possibility of non-reciprocity … . If reciprocity does not occur, the system will still work, in a literal sense, for those who need it (Stuit, 2016, p. 31). A system that recognises non-reciprocity as a possibility must implicitly demand acts of compassion, empathy, help, kindness, benevolence, generosity, love, care, friendship, and concern for others from its members, which are all underpinned by the value of altruism. Therefore, my argument is that if altruism is treated more centrally than it often appears, obligations not only become more asymmetrical, but more inclusive than they currently are, as well as capable of responding to people who, for whatever reason, including their disabilities, cannot reciprocate. The scope of obligations is broadened to enable the recognition of those who often go unrecognised, such as most African people with disabilities, who face the most drastic and unjust conditions that require urgent attention. Therefore, my argument is that asymmetry offers a more promising way of conceptualising obligations. Not only is asymmetry a more inclusive way of understanding obligations, but it is also a more accurate reflection of the compassionate foundations of African communitarian philosophy. Obligations are unmistakably perfectionist in nature and arguably the single most important process of developing virtue and excellence, which is in turn contingent on compassionate dispositions towards the well-being of others, especially those in need and distress.

Decolonising disability studies

19

An obligation-based approach to disability justice Having defined obligations and considered how their inattention to people with disabilities can be addressed, I now discuss how they can be mobilised against disability injustices in Africa. This is certainly a difficult task because of the neglect of obligations in disability justice discourse. As already mentioned, disability justice is dominantly a rights-based concept (Bagenstos, 2009; Zames and Fleischer, 2011). Rights, particularly civil and political rights (Bagenstos, 2009, pp. 27–28), originally emerged to protect people with disabilities as well as fully integrate them into community life. A conceptual shift from a civil and political rights-based model of disability justice to a universal human rights one was achieved by the United Nations Convention on the Rights of People with Disabilities (CRPD) 2006, which is an important legacy of the disability rights movement, signalling its transition into a global movement (Della Fina et al., 2017; Meekosha and Soldatic, 2011, p. 1386). As much as the CRPD 2006 is influenced by the social model of disability, which emerged to challenge individualistic and medical conceptions of disability, it does not wholly depart from these individualistic features, given that it promotes values of independence, autonomy, and self-sufficiency as general principles.3 State obligations is the only sense in which the term obligations is used in the CRPD 2006 and, by implication, rights-based disability justice discourse. The CRPD 2006 provides a list of several general obligations4 of state parties ‘to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability’.5 State obligations range from measures to implement rights,6 to abolish laws and cultural practices that discriminate against people with disabilities,7 and to train professionals and staff working with people with disabilities.8 Problems with state obligations, not exclusively those contained in the CRPD 2006 but generally in human rights discourse, are well recognised in the literature. State obligations are second-order obligations that require states to impose and enforce first-order obligations on others. In other words, states are not directly assigned with obligations to respect ‘liberty rights (after all, liberty rights have to be respected by all, not only by states)’ (O’Neill, 2005, p. 433) or to satisfy ‘rights to goods and services’, but rather second-order obligations to secure respect for liberty and to ensure goods and services are provided (O’Neill, 2005, p. 433). Problematically, it is states (and not the relevant international treaty) that define the first-order obligations that are correlates of human rights found in the treaties. This leaves human rights (or in this context disability human rights) on shaky foundations, as ‘… a coherent normative instantiation of Declarations and Covenants is devolved to the states party, which may (or may not) set out to secure positive rights for their citizens’ (O’Neill, 2005, p. 434). The problem is that the human rights system relies on the good faith of states who are often the greatest violators of rights (O’Neill, 2005, p. 435). Furthermore,

20

Oche Onazi

the human rights system takes for granted problems with states that make it difficult for the latter to live up to such obligations. It is doubtful that weak, failed, or quasi-states can live up to the demanding nature of second-order obligations, which begs the question of whether some obligations should be imposed on powerful non-state actors (O’Neill, 2005, p. 435). Given the societal dimension of the injustices and exclusions suffered by people with disabilities, there is a good argument that a range of horizontal obligations are required, in addition to the orthodox vertical ones, to achieve disability justice. Although my proposal for an asymmetrical conception of obligations can be understood only as a normative argument (since there are no empirical examples of an obligation-based approach), there is something to be said about the potential contribution obligations can make to disability justice. As much as it is possible to think of how asymmetrical obligations can be deployed to assist state parties in fulfilling their second-order obligations (such as promoting the full realisation of all human rights and fundamental freedoms for all persons with disabilities), it is more interesting, for present purposes, to explore how obligations can operate outside a rights-based framework. To date, very little is known about obligations in disability justice discourse as independent or stand-alone concepts. Even the muchcelebrated list of duties in the African Charter on Human and Peoples Rights 1981 or the recent Protocol to the African Charter on Human and Peoples Rights on Rights of Persons with Disabilities (The Protocol) 2019 operates within (and not outside) a rights-based framework. Given that very little is known about obligations in disability justice discourse, the objective here is to set out the broad outlines of an obligationbased approach. Thus, I outline two possible ways of institutionalising the core obligations (i.e., the obligation to help others in distress, the obligation to show concern for the needs and welfare of others, and the obligation not to harm others) identified in the previous section. Out of the three obligations, the obligation not to harm others is easier to implement as there is some guidance on how to achieve this. This is because it is analogous to a negative obligation, which is not uncommon to human rights discourse (Lichtenberg, 2010, p. 559). In this vein, the obligation can be reformulated into a negative obligation not to harm people with disabilities. Its substantive content can take the form of a duty imposed on obligation-bearers to desist from habits and practices that harm people with disabilities.9 One alternative is to translate it into a civic duty in a domestic constitution. It will rely on citizenship to collectively institutionalise the obligation not to harm people with disabilities. Since civic duties are often used to nurture virtuous dispositions – e.g., tolerance, trustfulness, benevolence, and respect for human rights – between co-citizens and to the community (Oaks, 2008, p. 97), it can provide a useful framework to encourage obligations not to harm people with disabilities. However, the problem with civic duties is that they are often voluntary undertakings. Civic duties – with certain exceptions – tend

Decolonising disability studies

21

to give individuals the latitude to discharge their obligations. Apart from their voluntary nature, negative obligations – via a civic duty model – insufficiently address the widespread nature of exclusion and injustices against people with disabilities in Africa. It does not seem clear how a regime of voluntary and negative obligations will impact on the lives of people with disabilities in the face of widespread neglect, marginalisation, and exclusion. Turning now to the obligation to help others in distress and to show concern for the needs and welfare of others. As significant as these obligations might appear on the surface, they are more difficult to institutionalise and command widespread compliance, especially if one takes Gyekye’s analysis above literally that they are not acts of supererogation. It may be the case that these obligations can only be practiced as supererogatory acts, considering the scale of the modern state. What this would mean is that discharging these obligations will exclusively depend on the good faith of individuals. The problem here is how difficult it is to anticipate far-reaching and meaningful conformity with these obligations on a voluntary basis, especially in the absence of something that compels individuals to do so. It is therefore plausible to consider the ethical and coordinating force of law as a more promising way of institutionalising obligations. Here, law is not proposed orthodoxly as a coercive instrument, but rather as an ethical guide to human behaviour (Bilz and Nadler, 2014, p. 242). The suggestion is not that obligation-bearers should be legally penalised or sanctioned for failing to help people with disabilities they encounter daily. This, of course, would be impracticable for several reasons, including the difficulty of translating altruistic obligations into concrete laws as well as enforcing them. Rather the suggestion is that the ethical force of law can help nurture compassionate dispositions (Herring, 2017, p. 163) amongst obligation-bearers as well as help pull together or collectivise such obligations in a way that they can be channelled to people with disabilities. Elsewhere I have considered a role for law through tax (Onazi, 2020). The term tax is used here as ‘… a means through which citizens in a political community share the burdens of living together based on fraternity and mutual dependency’ (Saffie, 2014, p. 199). Sharing the burdens of living together must imply a collective obligation to care for the sick, elderly, poor, and vulnerable, a majority of which (especially in Africa) are likely to be people with disabilities. Tax is therefore understood as ‘a placeholder of the altruistic obligations of people without disabilities to be generous, benevolent, compassionate, and friendly, or to help, love, and respect the most vulnerable people with disabilities’ (Onazi, 2022). Although tax primarily remains a moral obligation, it has a legally binding character. Tax without law is an incomplete obligation, unable to command widespread compliance (Honore, 1993, p. 5). Therefore, tax is the type of mechanism that can guarantee that the obligations to people with disabilities are binding and stringent on obligation-bearers. Tax transforms and translates what are

22

Oche Onazi

ordinary moral obligations into legally binding commitments to people with disabilities. Tax can be mobilised against disability injustice in several concrete ways, ranging from removing the barriers to sharing community relationships with others (i.e., providing assistive services – wheelchairs, walking sticks, and technologies), supporting their physical, mental, biological, and social welfare to enabling access to public goods and services, especially healthcare services, housing, educational, and employment opportunities. Undoubtedly, tax has its limitations. It runs the risk of marketising or reducing such altruistic obligations into hollow, compulsory, coercive, and instrumental monetary payments. Tax is not a perfect institution, but I argue that it provides the best mechanism to collectivise and institutionalise obligations in a way that can have a substantive impact on the lives of people with disabilities. Conclusion In this chapter, I have contributed to the understanding of what disability justice would look like if it mirrored an African relational community ideal. The persuasiveness of the ideal is the way in which the community is defined in terms of relationships between those who may or may not be its members. In doing so, the relational community ideal emphasises the importance of ethical obligations, which are to be discharged largely in mutual reciprocal terms. Although this conception of obligations remains compelling, I have argued that it is not sufficiently attentive to people with disabilities. To remedy its shortcomings, I have proposed an asymmetrical conception of obligations to attend to the needs and differences in ability of members of a community as well as to better recognise how they support and are supported by each other, especially the most vulnerable amongst them who are most likely to be people with disabilities. After showing that an obligation-based approach to disability justice is generally missing in the literature on disability studies, I have broadly outlined how my proposed African-inspired approach can remedy the gap in this literature. I have outlined a few ideas on what can be achieved in diverse African countries to attain disability justice. These ideas have not been rigidly proposed, but are subject to further development, refinement, and modification. This has been an exercise in imagination rather than a practical blueprint on how to implement an obligation-based approach to disability justice across Africa. Notes 1 Approximately 80 million Africans with disabilities (World Health Organization and World Bank 2011:4). 2 For similar criticisms of the social model, see Shakespeare (2021), Shakespeare and Watson (2001). 3 UNCRPD 2006, Article 4. 4 UNCRPD 2006, Article 4 a-i.

Decolonising disability studies 5 6 7 8 9

23

UNCRPD 2006, Article 4(1). UNCRPD 2006, Article 4(1)(a). UNCRPD 2006, Article 4(1)(b). UNCRPD 2006, Article 4(1) (b). This can complement provisions relating to the prevention of harmful practices against people with disabilities in the Protocol (2019), which defines harmful practices as forms of ‘… behaviour, attitudes and practices based on tradition, culture, religion, superstition, or other reasons, which negatively affect the fundamental freedoms of persons with disabilities or perpetuate discrimination’ (The Protocol 2019, Article 1). Given the predisposition in this chapter for an approach outside human rights discourse, it seems necessary to consider other ways of institutionalising this obligation.

References African Union (2019) Protocol to the African charter on human and peoples’ rights on the rights of persons with disabilities. Bagenstos, S. (2009) Law and the contradictions of the disability rights movement. Yale University Press. Bell, R. (2002) Understanding African philosophy: A cross-cultural approach to classical and contemporary issues. Routledge, Taylor and Francis Group. Bilz, K., and Nadler, J. (2014) ‘Law, moral attitudes and behavioural change’, in: Z. Eyal and D. Teichman (eds.) The Oxford handbook of behavioural economics and the law. Oxford University Press, pp. 242–267. Connell, R. (2011) ‘Southern bodies and disability: Re-thinking concepts’, Third World Quarterly, 32(8), pp. 1369–1381. Cornell, D. (2014) Law and revolution in South Africa: Ubuntu, dignity, and the struggle for constitutional transformation. Fordham University Press. Cornell, D., and van Marle, K. (2005) ‘Exploring Ubuntu: Tentative reflections’, African Journal of Human Rights Law, 5(2), pp. 195–220. Available at: https:// journals.co.za/content/journal/ju_ahrlj De Sousa Santos, B. (2018) The end of the cognitive empire: The coming of age of epistemologies of the south. Duke University Press. Della Fina, V. et al. (eds.) (2017) The United Nations convention on the right of persons with disabilities: A commentary. Springer International Publishing. Dworkin, R. (1981) ‘What is equality? Part 2: Equality of resources’, Philosophy and Public Affairs, 10, pp. 296–299. Flikschuh, K. (2014) ‘The idea of philosophical fieldwork: Global justice, moral ignorance, and intellectual attitudes’, Journal of Political Philosophy, 22(2), pp. 1–26. Grech, S. (2015) ‘Decolonising Eurocentric disability studies: Why colonialism matters in the disability and global south debate’, Social Identities, 21(1), pp. 6–21. Grech, S., and Soldatic, K. (2015) ‘Disability and colonialism: Encounters and (dis) encounters and anxious intersectionalities’, Social Identities, 21(1), pp. 1–5. Grosfoguel, R. (2007) ‘The epistemic decolonial turn: Beyond political-economy paradigms’, Cultural Studies, 21(2-3), pp. 211–223. Gyekye, K. (1997) Tradition and modernity: Philosophical reflections on the African person. Oxford University Press. Gyekye, K. (2010) ‘African ethics’, in: E. N. Zalta (ed.) Stanford encyclopaedia of philosophy. Available at: https://plato.stanford.edu/entries/african-ethics/ (Accessed: 17 October 2022) Herring, J. (2017) ‘Compassion, ethics of care and legal rights’, International Journal of Law in Context, 13(2), pp. 158–171.

24

Oche Onazi

Honore, T. (1993) ‘The dependence of morality on law’, Oxford Journal of Legal Studies, 13(1), pp. 1–17. Janz, B. (2007) ‘African philosophy’, in: C. V. Boundas (ed.) The Edinburgh companion to 20th century philosophies. University of Edinburgh Press, pp. 689–701. Janz, B. (2009) Philosophy in an African place. Lexington Books. Kaunda, K., and Morris, C. (1966) A humanist in Africa: Letters from Collin Morris from Kenneth Kaunda President of Zambia. Longmans, Green and Co Ltd. Lichtenberg, J. (2010) ‘Negative duties, positive duties and the new harms’, Ethics, 120(3), pp. 557–578. Maldonado-Torres, N. (2007) ‘On the coloniality of being: Contribution to the development of a concept’, Cultural Studies, 21(2-3), pp. 240–270. Masolo, D. (2010) Self and community in a changing world. Indiana University Press. Matolino, B., and Kwindingwi, W. (2010) ‘The end of Ubuntu’, South African Journal of Philosophy, 32(2), pp. 197–205. Maybee, J. (2017) ‘Em“body”ment and disability: On taking the “body” out of em“body”ment’, Journal of Social Philosophy, 48(3), pp. 297–320. Maybee, J. (2019) Making and unmaking disability: The three-body approach. Rowman and Littlefield Publishers Inc. Meekosha, H. (2011) ‘Decolonising disability: Thinking globally, acting locally’. Disability and Society, 26(6), pp. 667–682. Meekosha, H., and Soldatic, K. (2011) ‘Human rights and the Global South: The case of disability’, Third World Quarterly, 32(8), pp. 1383–1398. Menkiti, I. (1984) ‘Person and community in African traditional thought’, in R. Wright (ed.) African philosophy: An introduction. University Press of America, pp. 171–181. Metz, T. (2012) ‘An African theory of moral status: A relational alternative to individualism and holism’, Ethical Theory Moral Practice, 15, pp. 387–402. Metz, T. (2015) ‘An African egalitarianism: Bringing community to bear on equality’, in: G. Hull (ed.) The equal society: Essays on equality in theory and practice. Rowman and Littlefield, pp. 185–208. Metz, T., and Gaie, J. (2010) ‘The African ethic of Ubuntu/Botho: Implications for research on morality’, Journal Moral Education, 39(3), pp. 273–290. Mignolo, W., and Walsh, C. (2018) On decoloniality: Concepts, analytics and praxis. Duke University Press. Molefe, M. (2019) An African philosophy of personhood, morality and politics. Palgrave Macmillan. Ndlovu-Gatsheni, S. (2018) Epistemic freedom in Africa: Deprovincialization and decolonization. Routledge. Nussbaum, M. (2006) Frontiers of justice: Disability, nationality and species membership. Harvard University Press. Oaks, D. (2008) ‘Rights and responsibilities’, in: A. Etzioni (ed.) The essential communitarian reader. Rowman and Littlefield Publishers Inc., pp. 97–106. Onazi, O. (2020) An African path to disability justice: Community, relationships and obligations. Springer. Onazi, O. (2022) ‘What obligation should be owed to [African] people with disabilities?’, Review of Disability Studies: An International Journal, 18(1, 2), pp. 1–27. O
Neill, O. (2005) ‘The dark side of human rights’, International Affairs, 81(2), pp. 427–439. Quijano, A. (2000) ‘Coloniality of power, Eurocentrism, and Latin America’, Nepantla: Views from South, 1(3), pp. 533–580. Rawls, J. (1971) A theory of justice. Harvard University Press. Saffie, F. (2014) Taxes as practices of mutual recognition: Towards a general theory of tax law. Unpublished doctoral thesis. University of Edinburgh.

Decolonising disability studies

25

Sanders, M. (2007) Ambiguities of witnessing: Law and literature in the time of a truth commission. Stanford University Press. Shakespeare, T. (2021) I am hurt therefore I am: A new approach to our shared vulnerability. Aeon Essays. Available at: https://aeon.co/essays/i-hurt-therefore-iam-a-new-approach-to-our-shared-vulnerability (Accessed: 17 March 2022). Shakespeare, T., and Watson, N. (2001) ‘The social model of disability: An outdated ideology?’, in: S. Barnartt and B. Altman (eds.) Exploring theories and expanding methodologies: Where we are and where we need to go. JAI, pp. 9–28. Soldatic, K., and Grech, S. (2014) ‘Transnationalising disability studies: Rights, justice and impairment’, Disability Studies Quarterly, 34(2). Stein, M. (2006) Distributive justice and disability: Utilitarianism against egalitarianism. Yale University Press. Stuit, H. (2016) ‘Ubuntu and common humanity in the South African Truth and Reconciliation Commission’, in: H. Stuit (ed.) Ubuntu strategies: Constructing spaces of belonging in contemporary South African culture. Palgrave Macmillan, pp. 39–82. Tutu, D. (1999) No future without forgiveness: A personal overview of South Africa’s Truth and Reconciliation Commission. Random House. Van der Walt, J. (2018) ‘The origin of obligations: Towards a fundamental phenomenology of legal and moral obligation’, in: D. Matthews and S. Veitch (eds.) Law, obligation and community. Routledge, pp. 54–70. Veitch, S. (2017) ‘The sense of obligation’, Jurisprudence, 8(3), pp. 415–434. Veitch, S. (2021) Obligations: New trajectories in law. Routledge. Wiredu, K. (1996) Cultural universals and particulars: An African perspective. Indiana University Press. Zames, F., and Fleischer, D. (2011) The disability rights movement: From charity to confrontation. Temple University Press.

2

Racialised and gendered ableism The epistemic erasure and epistemic labour of disability in transnational contexts Nirmala Erevelles and Robel Afeworki Abay

Introduction The recent political protests that rallied against the persistent and pervasive structural anti-Black racism in the United States have ignited the global movement of Black Lives Matter against racial injustice. While the historical trajectories of these protests differ due to national contexts, the events in the United States have shed light on the experiences and effects of racial discrimination globally. In Germany, these transnational protests represent a moment of reckoning with past and present issues of race and racial oppression (Afeworki Abay, 2022; Afeworki Abay and Wechuli, 2022). While mainstream political discourse is narrowly focused on policing and racism both in the United States and Germany, this focus fails to recognise the centrality of white supremacism’s intimate collusion with (neo)colonial transnational capitalism as it plays a critical part in the dehumanisation and displacement of Black citizen-subjects living at the intersections of social difference. A central issue we raise is, how this political moment compels us to analyse and address the violence of anti-Blackness and systemic racism which is compounded by intersectional discrimination for instance due to structural ableism within the white middle/upper-class able-bodyminded heterosexual cisgender society (Erevelles, 2011a, 2011b; Erevelles Hall 2011; Afeworki Abay, 2019). In the wake of George Floyd’s murder, and parallel to the ongoing uprisings against anti-Black racism and police brutality both in the United States and Germany, transnational calls for the overdue transformation of historical and systemic racist instituitions are being made (Afeworki Abay and Hutson, 2024; Schalk, 2018). On the other hand, the profound interconnectedness of colonial systems of oppression based on disability, race, class, and gender is often overlooked in hegemonic discourses both in Germany and the United States. Addressing structural ableism intersectionally is therefore imperative in addressing other often interlocking forms of structural discrimination such as racism and sexism. Moreover, combating intersectional discrimination within hegemonic knowledge production as epistemic violence is critically necessary for foregrounding the reality of epistemic injustice. DOI: 10.4324/9781003280422-3

Racialised and gendered ableism

27

In this chapter, we move beyond mapping the epistemic violence propagated by these colonial systems of oppression to draw on Kimberlé Crenshaw’s (1991) deliberations on intersectionality and foreground materialist explanations for racialised and gendered ableism. Crenshaw described structural intersectionality as the delineation of the actual experience of and social response to violence as mediated by where Black women are located at the intersectional axes of race, class, gender, and sexuality. Additionally, according to Crenshaw, political intersectionality refers to the ways in which both feminist and antiracist politics have functioned in tandem to marginalise the issue of violence against women of colour. Drawing on these materialist theorisations of intersectionality, we argue that the intersectional context of Empire and its associated colonial violence provides the stage that enacts not only the epistemic erasure of disability but also the epistemic labour that disability is called to do in the service of other categories of difference (Erevelles and Morrow, 2022). We argue that this intersectional recognition of both the epistemic erasure and the epistemic labour of disability exposes how race, gender and disability are mutually constitutive and fetishised at the site of the exploitative political economy of transnational capitalism and we propose ways to explore alternate visions of working against epistemic injustice. The politics of invisibility within the coloniality of embodied difference In all its forms, the hegemony of Eurocentric knowledge systems has had a devastating impact on colonised Bodyminds1, especially for fundamentally marginalised and racialised communities: not surprisingly, disabled BIPoC (Black, Indigenous, and People of Colour) fall squarely in this category (Berghs and Dyson, 2020; Afeworki Abay, 2022). Due to the racialised and ableist structures as well as heteropatriarchal oppression, disabled BIPoC has been marginalised emotionally, physically, economically, and politically, as well as subjected to multiple forms of discrimination (Ben-Moshe and Magaña, 2014; Pisani, Grech and Mostafa, 2016). In Germany, the interlocking forms of racialised and gendered ableism compounded by intersectional disparities due to class, religion or sexuality, have been cited as a major driver of increased risk of social exclusion of disabled BIPoC (Pieper and Haji Mohammadi, 2014; Afeworki Abay, 2022). Yet, there is a considerable lack of theoretical and empirical engagements with confronting structural sexism, racism, and ableism in postcolonial spaces (Afeworki Abay and Hutson, 2024). Similarly, within the internal colonies in the United States – also known as the inner cities (Blauner, 1969) – the state has enacted violence against its own poor citizens of colour – many of them with disabilities. On an almost daily basis, we have witnessed police shootings that have both maimed and/ or murdered its poor, Black, and disabled citizens. The largest civilian population living in incarcerated settings exists in the United States, most of whom are overwhelmingly people of colour and many of them with

28

Nirmala Erevelles and Robel Afeworki Abay

disabilities. The United States public education system, where low-income students of colour are indiscriminately labelled with behavioural, intellectual, linguistic, and emotional impairments, is also quite literally ushered via the school-to-prison pipeline into a lifetime of involuntary institutionalisation in the prison industrial complex (Erevelles, 2014). Shifting to the economic context both in Europe and the Americas, transnational capitalism is also implicated in the simultaneous deployment of racism and ableism. The now well-established transnational capitalist exploitative machine has enabled capital to flow freely across international borders while at the same time ensuring that labour be confined within the nation-states themselves. This has maintained a cheap and docile labour force living in precarious conditions in obeisance to the dictates of the World Bank and the International Monetary Fund (Erevelles, 2011a). Many of their mandated economic policies have required the dismantling of the already skeletal economic safety nets in these nation-states, resulting in large shortages of food, inadequate access to healthcare, and deplorable living conditions that have continued the proliferation of disability. Undocumented workers across national borders both in the United States and Germany have endured perilous journeys braving death and dehydration and risking rape and sexual molestation to end up as labourers in fruit and vegetable farms, cattle ranches, chicken factories, and formal/informal service work and are compensated with the lowest wages, unsafe working conditions, and little to no medical care (Holmes, 2013; Steusse and Dollar, 2020). Global investment in the so-called “Third World” has resulted in the relocation of multi-national factories from the neoimperialist north where “third world” labourers in the Global South work under sweat shop conditions to produce cheap and affordable goods for consumption in the Global North. Recently, a garment factory burned down in Bangladesh and while the newspaper reporters rushed to count the dead, very little was said about the under-paid women labourers who have undergone amputations, suffered burns, and are working through posttraumatic stress (Head, 2021). Though creating visibility around these often-silenced issues is a shared goal, there is still a considerable lack of theoretical and empirical knowledge that draws on the specific intersectional relationship between racialised and gendered ableism – given the varying historical and geographical contexts of both forms of oppression in the United States and Germany (see Erevelles, 2011a; El-Lahib and Wehbi, 2012; Pieper and Haji Mohammadi, 2014; El-Lahib, 2015; Afeworki Abay, 2022). In order to better understand the systemic organisation of the interlocking forms of institutionalised racism, sexism, and ableism, in which the hegemonic reinforcement of existing racialised social relations has been consciously or unconsciously reproduced by legislations and every day institutional violence, this chapter analyses these interlocking forms of oppression from the perspective of a transnational materialist feminist disability studies. In this regard, the main aim of

Racialised and gendered ableism

29

this chapter is to reflect on the coloniality of embodied violence and to critically discuss how Eurocentric epistemological conceptualisations in disability studies are often entangled in (re)producing colonial discourses at the intersection of race, disability, and gender. Additionally, this chapter examines the relevance of intersectionality (Crenshaw, 1989, 1991) to address the existing power hierarchies and intersectional oppressions that are embedded in the system of racialised and gendered ableism (see Hutson, 2010; Erevelles, 2011a; Afeworki Abay, 2022). More specifically we ask the following questions: • How does the white middle/upper-class able-bodyminded heterosexual cisgender society benefit from the institutionalisation of racialised, gendered, and ableist oppression systems? • How are the intersecting dimensions of racism, sexism, and ableism inscribed on Bodyminds located at these violent intersections? • What can we learn from the United States to establish a broader discussion about race and racial oppression in Europe, specifically in the context of Germany, where the silencing of racism has resulted in cultural-based approaches for explaining disparities by analysing the “other culture” as a legitimate factor for social inequality which makes racism even more invisible? • What are the socio-political and historic implications of exploring the intersections of disability, race, and gender in the context of the current continuation of colonial structures that persist within transnational capitalism? Becoming disabled/becoming Black In her essay “Mama’s Baby, Papa’s Maybe: An American Grammar Book”, African American literary theorist Hortense Spillers (1987) writes, ‘… [b] efore the ‘body’ there is the ‘flesh’, that zero degree of social conceptualization that does not escape concealment under the brush of discourse, or the reflexes of iconography’ (p. 67). In Spillers’ analysis, which starts with the horrors of the Middle Passage, continues through the routine brutalities of slavery, and culminates in a Present that remains grounded in the originating metaphors of captivity and mutilation, what becomes exceedingly clear is how race, gender, and disability are mutually constitutive of each other (Erevelles, 2011a). Spillers’ essay is as much about disability as it is about race, even though the word “disability” is not mentioned once in her essay. This is startling because the ‘scene[s] of actual mutilation, dismemberment, and exile’ (p. 67) that Spillers’ describes in her essay produce disabled Bodyminds – Black disabled Bodyminds – who are transformed into commodities that are exchanged in the market for profit (Schalk, 2018). Citing William Goodell’s account of North American slave codes that expose this brutal violation of

30

Nirmala Erevelles and Robel Afeworki Abay

Black flesh, Spillers’ account describes the historical moment when enslaved subjects became simultaneously Black and disabled: The smack of the whip is all day long in the ears of those who are on the plantation, or in the vicinity; and it is used with such dexterity and severity as not only to lacerate the skin, but to tear out small portions of the flesh at almost every stake … The anatomical specifications of rupture, of altered human tissue, take on the objective description of laboratory prose – eyes beaten out, arms, backs, skulls branded, a left jaw, a right ankle, punctured; teeth missing, as the calculated work of iron, whips, chains, knives, the canine patrol, the bullet (p. 67). These same markings on the flesh, quite simply, also produce impairment (Erevelles, 2011a) that is not just biological/natural, but, more critically, historical, social, and economic. Enslaved, Black disabled Bodyminds were also stripped of all other social markers (e.g., gender) and, as a result, were simultaneously placed outside the narrow confines of white bourgeois femininity, reduced to beasts of burden, and subjected to violence that reconstituted the intimate contours of their Bodyminds (Erevelles, 2011a). Spillers’ essay describes scenes where ‘[a] female body strung from a tree limb, or bleeding from the breast on any given day of field work because the ‘overseer,’ standing the length of a whip, has popped her flesh open, adds a lexical and living dimension to the narratives of women in culture and society’ (p. 68). These narratives thus constitute the historical conditions of transnational slavery, such that race, disability, and gender mutually constitute the Black (female and/ or disabled) Bodyminds as a commodity that simultaneously authorises processes by which disabled Bodyminds become racialised and racialised Bodyminds become disabled (Schalk, 2018; Pickens, 2019; Afeworki Abay, 2022). Settler colonialism, madness, and reproductive (in)justice Another example that delineates the simultaneous imbrication of race, gender, and disability for Indigenous women living in the settler colonial state is Susan Burch’s (2014) historical account of the involuntary institutionalisation of Elizabeth Fe Alexis Fairbault, a Dakota woman who lived in South Dakota’s Canton Asylum from 1915 till her unexplained death in 1928. Fairbault was forcibly dis-located from her family and community and institutionalised at the Canton asylum because she was, as her husband asserted, mildly drunk. Hospital records report that she was diagnosed with “intoxication psychosis” (a medical diagnosis) and was involuntarily held at the institution for more than a decade. She tried to run away twice but was forcibly brought back, and she died there under questionable circumstances a couple of years after she had a child in the asylum. The father of the child was in question, with the institution insisting that the child’s biological

Racialised and gendered ableism

31

father was another inmate, a Diné (Navajo) man named Willie Dayea. However, other sources hinted that the Superintendent of the asylum, H. H. Hamner, could have raped Fairbault and could also have murdered her. The Canton Asylum, first called the “Hiawatha Asylum”, opened in 1902 and it was the only federal psychiatric institution in the United States specifically dedicated to American Indians. The Asylum closed amid scandal in 1934 after nearly four hundred men, women, and children from seventeen states and fifty tribal nations inhabited its wards. Burch (2014) cites researchers Bradley and Jennifer Soule who wrote that the primary reason for the Canton Asylum inhabitants’ “discharge” was death: ‘roughly 120 in twenty years, or 45 percent; the high mortality rate due to tuberculosis (onethird) and the comparatively young age at death—forty-two years—were remarkable’ (p. 148). By the 1920s, Canton also held a sizeable and growing Indigenous population diagnosed with intellectual disabilities, which contrasted with all other psychiatric institutions at the time. Burch’s recounting of Fairbault’s displacement and destruction at the hands of the colonial state brings to bear a poignant narrative that endures at the intersections of indigenous life, gendered violence, and disability such that we find it almost impossible to disentangle disability from race and gender in trying to understand how Fairbault came to be involuntarily committed to the Canton Asylum. An intersectional analysis would ask the reader to consider the history of forced dislocations of Indigenous peoples from land and community in relation to the history of involuntary confinements of disabled people in state asylums and institutions (see in this book: Wechuli and Afeworki Abay). An intersectional analysis would also ask us to consider the differential treatments meted out to disabled white people and disabled Indigenous communities trapped in these state institutions. Reproductive (in)justice, ableism, and the politics of citizenship In the intersectional context of immigration legislation and reproductive rights, one of the central questions has historically been: who may give birth to citizens? (Molina, 2006). Molina notes that prior to the 1924 Immigration Act, Mexican male labourers whose physical bodies were seen to be uniquely equipped to perform physical labour in the agricultural, mining, and railroad industries were not regarded as “diseased”, even though the number of Mexicans who died of tuberculosis were almost double that of all other immigrant groups. On the other hand, Mexican women were consistently subject to the close scrutiny of the state around the issue of reproduction, such that the high infant mortality rates in their communities were used as an indication, not of poor economic conditions and inadequate prenatal care, but of Mexican women’s ill-health, lack of education, and poor parenting skills. In this way, Mexican women were cast as diseased reproducers of unfit citizens and therefore undeserving of the privilege of legal immigration.

32

Nirmala Erevelles and Robel Afeworki Abay

Similarly, Jacqui Alexander and Chandra Talpade Mohanty (1997) describe how the colonial/postcolonial/neo-colonial nation-state conflates white (hetero) sexuality with citizenship and organizes a “citizenship machinery” such that all those who deviate from this norm are seen as suspect. Thus, for example, while African American women’s sexuality was effectively harnessed for the reproduction of slavery in the service of the colonial state, they were deemed as fit only for ‘a dehumanized reproduction’ (Price and Shildrick, 1999, p. 80). This construction of African American women’s sexuality and reproductive capacity continues to manifest itself in the neo-colonial state via administrative (social) policies, where African American women with HIV/AIDS are represented as being both dependent and diseased, thereby denying them the right of access to resources that they need for their survival. Thus, for example, Evelyn Hammonds (1997) describes how, even though African American women’s voices are not heard in discussions of HIV/AIDS, the intimate details of their lives while living with HIV/AIDS are often widely exposed and discussed in efforts to justify their victimisation. In each one of the above examples, “disability” serves as the political and analytical category deployed by the colonialist state to patrol the boundaries of citizenship. Yet, notwithstanding the central role “disability” plays in the justification of nationalist discourses of colonialism/imperialism/neocolonialism, transnational feminist and decolonial perspectives have failed to explore the implications for interpreting disability in this way. This is perhaps because, as Deborah Stienstra (2002) reports, transnational feminists uncritically accept disability as an issue of individual pathology/tragedy and therefore not a state responsibility, and by doing so, they problematically (re)locate disability to the “private” sphere. Similarly, feminist disability studies’ theorists, even though they argue that disability is not a “private” issue but a “public” social category, often fail to offer a sustained critique of the “public” context within which the neo-colonial state is implicated in the pathologizing of not only disability but also of race, gender, and nation (Price and Shildrick, 1999). Disability and colonial subjectivities Many scholars argue that epistemological decolonisation has emerged as a necessary framework to trace the complex mechanisms of coloniality of knowledge and power (see Quijano, 2000, 2007; Mignolo, 2007) as well as to address the structural inequalities of postcolonial geopolitics (Gutiérrez Rodríguez, 2018; Getachew, 2019) that are embedded in various forms of epistemic violence (Spivak, 1988) as well as in the ongoing reproduction of colonial discourse of Otherness (Said, 1978). Over the past few years, decolonial perspectives have also continuously been discussed in contemporary academic discourse in Disability Studies of the Global North (Hutson, 2007, 2011; Pisani, Grech and Mostafa, 2016; Puar, 2017; Afeworki Abay, 2019). Yet, decolonial theorisation of disability that goes beyond critique

Racialised and gendered ableism

33

often remain rare (Chaudhry, 2019; Ineese-Nash, 2020; Afeworki Abay, 2022). In this regard, we have to rethink and reclaim the radical potential of critical examination of the existing intersectional colonialities in the contexts of disability and global inequality: In colonial times both disabled and racialised individuals were institutionalised to contain resistance and prevent the ‘pollution’ of the wider population. Removal of children from family and community has for centuries been justified on the basis of disability, as has removal of children on the basis of race and gender. The colonial authorities, with assistance from missionaries, established institutions to contain and control those among the colonised that were viewed as dissident and abnormal (Meekosha, 2011, p. 673). Rooted in Black feminism (Crenshaw, 1989), intersectionality highlights the subtle ways in which experiences of marginalization could lead to social inequality and discrimination, particularly for oppressed groups based on socially constructed categories (e.g., race, ethnicity, gender, disability, class, sexuality, etc.). Moreover, intersectionality critically analyses how power and inequality are structured differently for particular oppressed groups based on socially constructed categories (e.g., race, ethnicity, gender, disability, class, sexuality, etc.). The question on how the different aspects of power dynamics in the racialised capitalist system manifest in the existing structures of social inequality of disabled BIPoC has been an understudied phenomenon in Germany. As Helen Meekosha (2011, p. 677) reminds us: Colonialism was not only an economic process, but also one of imposing Eurocentric knowledge on the colonised. So postcolonialism has resonance for disability studies and helps explain the dominance of perspectives from the metropole. Indeed, there have only been few efforts done so far in academia to uncover how power is produced and reproduced by Eurocentric discourses. Therefore, we must critically examine how social stratification is reified at the extremities within postcolonial power, dominance, and privilege in racialised capitalism: Colonialism paved the way for twentieth-century capitalism and the phenomenon of globalization. The rapid increase in impairment in the global South largely can be attributed to these dual and interrelated processes (Meekosha, 2011, p. 674). In doing so, postcolonial theories emphasize the global, historical, and therefore colonial dimensions of race relations, including how imperialism has generated racial thought and racial stratification. Postcolonial theories

34

Nirmala Erevelles and Robel Afeworki Abay

are ‘a broad rubric for examining a range of social, cultural, political, ethical, and philosophical questions that recognize the salience of the colonial experience and its persisting aftermath’ (Jack et al., 2011, p. 277). The postcolonial theoretical perspective illuminates how current patterns of control, exploitation, and domination between subjects of different geopolitical territories are operationalised through various institutional and discursive trajectories that find their legacies rooted in the colonial encounter. Recently, some scholars have raised the complexities of race in geopolitical locations distinctly marked by the Western imperialist project (Prasad, 2014; Ulus, 2015). These studies underscore how racism and racial hierarchies that were imposed initially during Western imperialism only became further consecrated in the era of postcolonialism. Necropolitics: Racialisation without racial terms The process of racialisation produces social conditions in which some lives matter less than others, or not at all: ‘sovereignty means the capacity to define who matters and who does not, who is disposable and who is not’ (Mbembe, 2003, p. 27). In this regard, Mbembe asks two fundamental questions: ‘What place is given to life, death and the human body?’ and “How are they inscribed in the order of power?’(Mbembe, 2003, p. 13). Thus, necropower works towards ‘the creation of death-worlds, new and unique forms of social existence in which vast populations are subjected to conditions of life conferring upon them the status of living dead’ (p. 40). Indeed, the colonial narrative reduces the complexities of racism as it discursively unfolds within the structural and institutional settings (Attia, 2013; Gilroy et al., 2019). In fact, race ubiquitously materialises both in discourses and everyday lives of refugees in Europe, where legacies of colonialism continue to remain highly invisible for instance in German public and political discourses, as well as in organisations and institutions (Afeworki Abay and Wechuli, 2022). These intersectional discriminations, including, but certainly not limited to, precarious legal status leading to inadequate access to social welfare services, low wages, and quality healthcare, as well as lack of affordable housing options, have been cited as a major driver of increased risk of social segregation and exclusion of BIPoC (Afeworki Abay, 2019). Racialised and gendered ableism have therefore been some of the everyday lived realities of much larger structural processes for disabled BIPoC in Germany (Pieper and Haji Mohammadi, 2014; Pieper, 2016; Afeworki Abay, Schülle and Wechuli, 2021; Afeworki Abay, 2022). Their social exclusion needs therefore to be understood as a progressive process of marginalisation leading to economic deprivation due to various forms of inequality, for instance, in educational attainment and labour market outcomes. The structural, institutional, and symbolic violence cast upon racialised Bodyminds are particularly conspicuous among the most socio-economically

Racialised and gendered ableism

35

disenfranchised – those racialised and colonised Bodyminds (Schalk, 2018; Afeworki Abay, 2022). What remains far more confounding are the intricate systems of structural and institutional racism that prevail in and govern society today and are equally detrimental to those affected by any form of racialised capitalism (Virdee, 2019; Afeworki Abay, 2022). Therefore, conceptualising the complex manifestations of racism requires an intersectional understanding of racist ideologies within the discursive, institutional, and interpersonal level, as all these patterns work together complementarily and enact racism in society in general and in institutions specifically (Annisette and Prasad, 2016). Thus, to holistically conceptualise the complex antecedents and manifestations of racism, it is crucial to have an integrated understanding of how racist ideologies, macro-institutional dynamics, and micro-level interactional patterns function and work together complementarily. In decolonial theories, racism is not considered as the oppression of individuals but of colonised communities. Racism should therefore be understood as systematic and institutional. Historically, it was under the aegis of the colonial system that the equality of citizens was subverted in support of a culturalist definition of the nation. In this framework, the colonised could only enjoy the privileges of citizenship if they gave up their civil status. This situation is similar to Frantz Fanon’s concept of the “Black Skin, White Masks” (Fanon, 1967). What often deliberately remains ignored within the public, political, and academic discourses is the fact that epistemological conceptualisations continue to be dominated by the hegemonic order of Eurocentric knowledge within the disability discourse in Germany (Afeworki Abay, Schülle and Wechuli, 2021). In this regard, it can be argued that racism in contemporary discourse functions without racial terms by legitimising the colonial privilege of “cultural differences” and by essentialising the “other culture”. There is no doubt that hegemonic discourse serves to legitimate the structures of power, dominance, and discrimination within the contemporary postcolonial space. In other words, “cultural racism” is deeply rooted in violent processes of discursive and institutional othering. This is also a crucial aspect for critically analysing the multiple forms of othering as ‘epistemic violence’ (Spivak, 1988, p. 280) that should be addressed more adequately in future research projects by highlighting several implications for further intersectional decolonial interrogations as a way of ‘epistemic reconstruction’ (Quijano, 2007, p. 176). Undoubtedly, hegmonic discourses of decolonisation serve to legitimate a situation of domination, relegation, and systemic social exclusion within the contemporary postcolonial space. Clearly, the postcolonial capitalist system also reproduces divisions and compartmentalisations among the oppressed communities from the colonial system (Afeworki Abay and Hutson, 2024). For instance, the debates surrounding the law on the wearing of religious signs have brought to the fore the persistence of colonial representations of a “violent heterosexuality” between the “violent Muslim men” and the “oppressed Muslim women”.

36

Nirmala Erevelles and Robel Afeworki Abay

The very fact that those concerned went unheard and that they were asked to unveil themselves under threat of punishment, exclusion, and academic expulsion was deplorable. It is therefore necessary, to recall the past and present oppression of anti-Black racism, anti-Muslim racism, and antiSemitism, when it is being absolutised or put into competition with that of other groups, as these oppressed groups are often played in “oppression olympics” for instance between anti-Muslim racism and anti-Semitism (Arnold, 2018; Afeworki Abay and Hutson, 2024). The interplay of racism, sexism, and ableism in the postcolonial moment Undoubtedly, racism, sexism, and ableism are interconnected, and when combined, they compound and transform the experiences of oppression that are institutionalised in economic, political, social, and cultural institutions in sustaining the colonial system of human hierarchy (Erevelles, 2011b; Afeworki Abay, 2022). These intersectional discriminations and lived experiences of institutionalised sexism, racism, and ableism go far beyond from the Bodyminds, attitude, skills, and knowledge of individuals; it is a fundamental example of interlocking forms of structural discrimination. To understand these intersectional mechanisms of oppression, we should go beyond the experience to look at how the institutions function to shape the experience. Although an increased commitment to intersectionality research on the interplay of disability and race can be observed recently in Germany, many methodological and ethical research questions, especially due to the neglect of disability as a category of difference in intersectionality research, remain unanswered (Wischmann, 2018; Jugert et al., 2021; Afeworki Abay and Wechuli, 2022). One of the reasons for this is that critical analyses of social relations of inequality are predominantly carried out through the classic social categories (race, class, gender), and disability as a category of difference has so far received little attention in intersectionality research in Germany, although disability is one of the central socially constructed categories (Afeworki Abay, Schülle and Wechuli, 2021). Race, gender, and disability are often understood to be inseparably interwoven, and yet, not enough attention has been paid to developing and integrating the theoretical and conceptual frames between gendered and racialised ableism (Erevelles, 2011b; El-Lahib and Wehbi, 2012; Pieper and Haji Mohammadi, 2014; El-Lahib, 2015; Afeworki Abay, 2022). Surprisingly enough, despite the many similarities shared by people with experiences of ableism, sexism, and racism, these dimensions of oppression have hardly been considered together in German academic researches (Afeworki Abay, 2022). Instead, the idea of the existence of ableism beyond racism and other forms of discrimination such as classism or sexism creates a

Racialised and gendered ableism

37

white heteronormative understanding of social identities as universalist. Although racialised and gendered ableism have multiple parallels and overlaps in terms of structural discrimination, they are however not reducible to each other, as they are rooted in different historical processes of exploitation, discrimination, and dehumanisation (Hutson, 2007, 2010; Erevelles, 2011a; Afeworki Abay, 2022). As Intersectional analysis is complex, it is important to highlight that there are no monolithic discriminations which can be added up in theoretical and empirical interrogations. Disabled BIPoC and their concerns are being erased from the discourses and spaces of the white middle/upper-class able-bodyminded heterosexual cisgender society both in Germany and the United States. Their experiences are disregarded. White disabled people use their own experiences of discrimination to emphasise commonalities. This leads to a forced equalisation of the problems of all disabled people. Disabled BIPoC experience racial discrimination not only in the community of disabled people, but also within the BIPoC communities (Afeworki Abay, 2019). Although disability is seen as a deviance from white heteronormative “normality”, it is also simultaneously defined only through the lived realities, attributions and imaginations of white people. Concepts such as “inclusion” and “accessibility” are therefore often considered without the perspectives of disabled BIPoC. For the white middle/upper-class able-bodyminded heterosexual cisgender society, disabled BIPoC, especially disabled refugees do not even exist (Yeo, 2015; Köbsell, 2019). We recognise these practices as the epistemic erasure of disability at the intersections of difference. Pathologisation and epistemic erasure at the intersections One way by which disability experiences epistemic erasure at the intersections is enacted is by the often-deadly practices of pathologisation. Scholars both in Critical Race Theory and Disability Studies know well the dangers of pathologising Bodyminds (Pickens, 2019; Afeworki Abay, 2022). Since pathology is closely associated with the medical model, the emphasis is on cure rather than care. Here the intent of a pathological intervention is the single-minded decision to destroy the isolated contravening agent assumed to be the vector of disease. In the context of rampant anti-Black violence in the United States and Germany, the violence is justified by perceiving the victims of this violence as the very embodiment of pathological difference; they, then, become the objects of destruction rather than the subjects of care. Claiming that their pathologised Bodyminds locate them outside the boundaries of humanness, the violence that is done to them is justified because they are seen as the state of exception existing within the zone of bare life (Agamben, 2005). Thus, the pathologisation of George Floyd as dangerous thug contributed to his brutal murder in front of witnesses in broad daylight (Lee, 2021). A similar argument could be made when describing the violent, racist and ableist police violence in Germany; the

38

Nirmala Erevelles and Robel Afeworki Abay

16-year-old disabled, Black refugee, Mouhamed Lamin Dramé, was murdered by Dortmund police on 8th of August 2022 (Afeworki Abay and Hutson, 2024). Furthermore, the disinterested global response to the Ebola epidemic in countries in Sub-Saharan Africa until it threatened the countries in the Global North (Smith, 2015) was also justified based on the pathologisation of African People as the “living dead” via the deployment of a Necropolitics that casually consigned their pathologised Bodyminds to what Achille Mbembe (2003) has described as “death worlds”. In this chapter, we argue that so much of the violence does not stem solely from structural racism but in the complex ways in which it intersects with ableism in the creation of Bodyminds that “do not matter” in the same ways as Bodyminds that are deemed normative (Schalk, 2018; Pickens, 2019; Afeworki Abay, 2022). In marking these intersections, we are not talking about race and disability as analogous, as scholars in both fields of Critical Race Theory and Disability Studies have been wont to do. In fact, scholars deploying Critical Race Theory have often sought to distance themselves from disability because as Kate Kaul (2013) insightfully points out the function of disability has been to mark the failure within and of categories of difference. To challenge dominant ideologies of impairment/disability as being inherently negative and in constant need for amelioration/cure/elimination, Fiona Kumari Campbell (2009) therefore calls for de-centreing ableism. Here, Campbell identifies ableism as a structural system of oppression analogous to structural racism and argues for an epistemological and ontological inquiry into the formation of naturalized understandings of what it means to be fully human. Here, Campbell foregrounds the ableist assumptions that support the habitual association of disability with a diseased and deficient pathology. Campbell (2009), nevertheless, falls into the familiar habit of reading ableism as analogous to racism rather than theorising racism and ableism as constitutive of each other. One problem with the analogy is that there is the assumption that disabled subjectivities are not racialised and racialised subjectivities are not disabled (Afeworki Abay, 2022). Using as an example Robert McRuer’s (2006) deployment of the concepts “critically queer” and “severely disabled” as analogous, Kaul (2013) points out that the analytic power of the analogy fails to account for how historical representations of homosexuality as disability connect with the material consequences of Queer Bodyminds being incarcerated as “perverts” as well as the contradictory politics of including “gender dysphoria” in the DSM V – an inclusion that simultaneously pathologises trans identities even while this inclusion enables trans-persons to gain access to appropriate medical care. In this chapter, moving away from analogy, we instead foreground the historical continuities that have shaped the epidemics of violence begun during colonial times and that have continued to travel all the way through to the present, justified via pathologies intimately intertwined by racist and ableist ideologies. For example, in Harriet Washington’s (2006) book, “Medical Apartheid: The Dark History of Medical Experimentation from

Racialised and gendered ableism

39

Colonial Times to the Present”, she documents the comprehensive history of medical abuse of African Americans who for centuries served as “unwilling subjects” of unethical medical research. Washington’s singular focus on African Americans foregrounds in painful detail the extensive abuse justified via the use of racist ideologies and practices. Our reading extends her focus to also engage disability. We argue that in Medical Apartheid, an appeal is made to the pathological in relationship to race and disability to justify the appropriation of the unpaid and non-voluntary labour of African Americans to the medical industrial complex. For example, here is one of the many quotes from Washington’s book to illustrate this ideology: The Negro “with us” is not an actual physical being of flesh and bones and blood, but a hideous monster of the mind, ugly beyond all physical portraying, so utterly and ineffably monstrous as to frighten reason from its throne, and justice from its balance, and mercy from its hallowed temple, and to blot out shame and probity, and the eternal sympathies of nature, so far as these things have presence in the breasts and beings of American republicans (James Mccun Smith M.D. quoted in Washington, 2006, p. 75). We quoted this in full to illustrate how easily racist and ableist ideologies intertwine to construct the “Negro” as not fully human. More than a century later, the police officer Darren Wilson’s testimony portrayed Michael Brown, another unarmed African American he shot in Ferguson, Missouri, in a manner that almost echoed the above description but using different words: When I grabbed him the only way I can describe it is I felt like a 5-year-old holding onto Hulk Hogan … . Hulk Hogan, that’s how big he felt and how small I felt just from grasping his arm … . I felt another one of those punches in my face could knock me out or worse. I mean, it was, he’s obviously bigger than I was and stronger and the, I’ve already taken two to the face and I didn’t think I would, the third one could be fatal if he hit me right … .[He] had the most aggressive face. That’s the only way I can describe it, it looks like a demon, that’s how angry he looked (quoted in Peralta and Calamur, 2014). While in Michael Brown’s case, these descriptions that appealed to the intersecting violence of racist and ableist ideologies were deployed to justify the murder of an unarmed African American male, the ideologies described in Washington’s book were generated to justify the utilisation of the “Negro’s body” for medical science. Thus, for example, Public Health Physician Thomas Murrell had this to say: The future of the Negro lies more in the research laboratory than in the schools … When diseased he should be registered and forced to take

40

Nirmala Erevelles and Robel Afeworki Abay treatment before he offers his diseased mind and body at the altar of academic and professional education (quoted in Washington, 2006, p. 10).

Describing the Black disabled Bodyminds as uniquely situated to contribute to the medical industry on account of their unique pathology started Black men, women, Queers, and children down the slippery slope of the most brutal violence under the unethical guise of medical care. Slipping unerringly towards the most heinous and unethical medical practices, Black men, women, and children were a) subject to surreptitious surgical and medical procedures while unconscious; b) injected with toxic substances; c) monitored rather than treated for deadly ailments that excluded them from life-saving medicines; d) secretly farmed for sera and tissues that were used to perfect technologies and infectious disease tests (p. 6); e) uninformed participants in the Tuskegee syphilis studies in the 1970s; and f) more recently part of the continuing practices of unethical research as in the 1996 jailing of poor Black mothers who became research subjects in South Carolina and in 1998 the infusion of poor Black New York City boys with the cardio toxic drug fenfluramine (Schalk, 2018). Once again racist and ableist pathologies were collectively used to discount Black suffering and to shore up Black fearfulness/Black credulousness/Black emotional instability/Black tendency towards falsehoods (pathology). Such arguments regarding the invulnerability of Black men, women, Queers, and children actually belied the real material suffering that they had to endure. Contrary to these false pathologies, Black women and Black Queers suffer the highest amount of stress and depression, and suicide rates have soared more than 200 times for Black men. Additionally, Black women’s Bodyminds have also become a site for the creation of disability when Black women have endured psychological trauma/disfigurement/chronic illness. During slavery, slave death and disability were inherent in mining, plantation work, tobacco production, and rice farming. However, rather than foregrounding the political economic conditions that created the constitutive racialised and disabled subject, racist and ableist pathologies constructed negritude as an illness. Thus, for example, Samuel Cartwright spent a great deal of time describing the diseases and physical peculiarities of the “Negro race” as pathologies; for example, when enslaved Black people exhibited a distaste for slavery or when starving Black children showed a propensity for eating nonfood substances like chalk/clay/dirt displaying a condition called pica. One can see the same logic played out in the way the United States media responded to the outbreak of Ebola in a few countries in Africa (namely Guinea, Sierra Leone, and Liberia) where another epidemic of violence was unleashed against Black Bodyminds assumed to have any association with Africa, whose racist categorisation as the Dark Continent continues to this day (Schalk, 2022). In a blog post sponsored by the Hampton Institute entitled “Kind of Blue, Part II”, Sonasha Braxton (2014) argues that in a

Racialised and gendered ableism

41

historical context where ‘there exists an increasingly visible disproportionate response to the “inconvenient” and ‘deadly’ presence of Black Bodyminds, and what they embody both literally and metaphorically … . an exploration into how Ebola became a racially constructed politically pliable discourse must necessarily ensue”. Braxton’s argument is powerfully relevant in the transnational context in which there has been a continuous history of medical violence directed towards people of colour living in the Global South. There are continuities between the “Mississippi appendectomies” (Tafesse, 2019) conducted in the Southern United States as late as 1963 and reports from the Israeli paper Haaretz, where, as recently as 2013, the government admitted to coercing poor Ethiopian women into receiving longacting Depo-Provera, as a prerequisite for immigrating, thus explaining the 20% reduction in Ethiopian-Israeli births in the last decade (Nesher, 2013). And we know quite well that settler colonial states like the United States and Canada have propagated similar eugenic policies and continue to do so even today against Indigenous populations. What strategies can be deployed against a “neoliberal ableism” (Goodley and Lawthorn, 2019) implicated in this violence of Empire and its aftermath? Roland Coloma (2013) defines Empire as not just a geopolitical entity but also as an enactment of power in conjunction with colonialism, neo-colonialism, and imperialism. According to Coloma, the imperialist, colonialist, and neo-colonialist practices of empire enable metropolitan centres to continue to exert power over subordinate states/territories/people to enable the expansion of their political power; the accumulation of financial capital through unequal trade and economic relations; the extraction of natural resources, cultural products, and colonised labour and Bodyminds; and the imposition of metropolitan values, knowledges, and practices (Afeworki Abay, 2022). What Coloma fails to note and what is central to the functioning of Empire is the proliferation/production of disability that we alluded to earlier, both ideologically and materially, mapping out transnational histories that spill over and seep across national borders and through racialised Bodyminds marked by casual acts of violence (it is this casualness that normalises this violence) justified via ideologies that were simultaneously both ableist and racist. Michael Hardt and Antonio Negri (2001) argue that Empire has transformed itself into a knowledge economy where the processes of biopower are intent on producing ‘the healthy, rational, autonomous, educated, economically viable, self-governing and able: a self-contained individual’ (Sampson, quoted in Goodley, 2014) and offer, via its rehabilitative and medical industrial complex, an option of being fixed (i.e., normalised). Hardt and Negri’s argument is problematic because it fails to recognize the historical continuities that organize the extraction of labour from racialised Bodyminds to even make this knowledge economy possible. Moreover, disabled Bodyminds continue to proliferate in the very act of sustaining this knowledge economy and ironically become both the subject as well as the object of these

42

Nirmala Erevelles and Robel Afeworki Abay

disciplinary practices – an unremarked contradiction located at the very heart of neoliberal biopolitics (Afeworki Abay, 2022). We, therefore, argue that when disability is included in an intersectional analysis, it exceeds representational politics to also perform epistemic labour in the constitution of other categories of difference (Erevelles and Morrow, 2022). On one hand, as per Crenshaw’s articulation of structural intersectionality, ableism intersects with other oppressive structures to impact social policy as well as the lived experiences of multiply marginalised communities as a tool to structure social difference. In fact, as many disability studies scholars (McRuer, 2006; Erevelles, 2011a; Pickens, 2019; Kim and Schalk, 2021; Schalk, 2022) have pointed out, disability serves as a mode of justifying the social oppression of other categories of difference. This recognition of disability within the context of structural intersection thus explains the vexed relation disability has with other categories of difference – in that disability becomes the category to avoid rather than with which to build an alliance. Here disability as structure marks the distinctions between “worthy/valued” and “disposable/devalued” life. In fact, it is only through the epistemic erasure of disability that other categories of difference can make claims to their own freedom. This is what we argue is the epistemic labour that disability is forced to do in intersectional analyses of difference. And failing to recognise this epistemic labour serves to effect the erasure of Black, Queer, Indigenous, poor, gendered, disabled, and mad people since there is little space both in the discourse and dominant society for them. Echoing Crenshaw’s foregrounding of the intersecting structures that render women vulnerable to multiple exigencies, Kim and Schalk (2021) in their Crip of Colour critique also identify how ableist violence operates alongside and through heteropatriarchy, capitalism, and white supremacy and thereby demonstrate how feminists of colour in disability studies explore ‘unexpected points of affinities that might build coalition across categories’ (p. 137). And yet coalition is resisted because as Bailey and Mobley (2019) point out Black people cannot afford to be disabled when they are required to be ‘phantasmically abled’ in a white supremacist society (Bailey and Mobley, 2019, p. 22). This is because, as the work of Leroy Moore (2017) and The Harriet Tubman Collective (2017), among others, have pointed out, white disability uses disability as metaphor in arguing for their continued oppression. For example, an oft-quoted phrase articulated by white disability rights activists goes something like this: Black people fought for the right to not sit at the back of the bus, but disabled people cannot even get on the bus. Following up on this logic, disability studies scholars have challenged dominant ideologies of impairment/disability as being inherently negative and in constant need for amelioration/cure/elimination. Additionally, within communities of colour, it is complicated to claim disability pride when disabled people often become disabled because of the violence of structural intersectionality when State apparatuses – prisons, police, schools, and welfare systems – rarely support the most precarious

Racialised and gendered ableism

43

classes of people and, in fact, regularly brutalise those who are poor, undocumented, Black, brown, disabled, Queer, trans, and/or gender nonconforming. Such apparatuses often operate as instruments of mass disablement that disproportionately target Black and brown populations. How then can disabled BIPoC communities represent Pride at the intersections of difference? It is in this problematic context that Bailey and Mobley (2019) ask us to ‘imagine a Black life that is more than just survival and more than able-bodyminded utopia. What does liberation look like if disabled Black bodies are allowed in our futures? Would we be better able to hold Disability Studies accountable for its erasure of raced and gendered bodies?’ (p. 34). Conclusion: Disability futures and the political economy of care at the intersections of race, gender and disability Even as we map out the constitutive relationship between racist and ableist pathologies that have continued to justify epidemics of violence directed against Black/brown/disabled people, we want to be very clear that we do not intend to reproduce ableist pathologies that continue to associate disability as a precarious condition settling into a “slow death” (Berlant, 2007). Tanya Titchkosky (2007) argues that there is an urgency to read and write disability differently for a more radical counter-narrative. Alison Kafer (2013) echoes this call when she writes, ‘We need to imagine crip futures because disabled people are continually being written out of the future, rendered as a sign of a future no one wants’ (p. 46). In Feminist, Queer, Crip, Kafer (2013) calls feminist/queer/environmental theorists/activists to account for the ableism that is inadvertently or deliberately intertwined in their transgressive/oppositional visions for a future that explicitly (or implicitly) excludes the possibility of disability and comes at a huge cost to the disability community. She, therefore, thoughtfully asks: what does it mean to choose futures for disability? Kafer’s question has been answered by legions of disability activists/scholars in disability pride parades, in vibrant disability justice movements, in the transgressive aesthetics of disability art, in the angry protests against the medical industrial complex, against incarceration both in prisons and institutions, against sterilisation, against segregation in education, labour market, nursing homes, and more recently in the newly expanding scholarship/and protests against neoliberal doctrines that are anathema to any claims for Crip futurity. But these protests should also give us pause in Rachel Gorman’s (2016) blunt and very thoughtful assertion that Disability Studies/Crip Theory (similar to other social theories) have all inadvertently reconstituted the disabled subject as white subject, creating a disability rights consciousness that Gorman calls “disability nationalism”, similar to Jasbir Puar’s (2013) critique of Homonationalism in the context of the problematic racialisation of queer politics. What allegiances do disabled people located at the crossroads of shifting identities have with a largely white middle/upper-class heterosexual

44

Nirmala Erevelles and Robel Afeworki Abay

cisgender disability rights movement in the Global North? And how would our contradictions in the face of these real struggles enable us to imagine futures that do not rely on the exploitation and colonisation of others? By raising these questions, we are arguing for ways to recognise both the epistemic erasure and epistemic labour associated with disability and move beyond that, shifting from the violence of the political economy of cure to the transformative possibilities located in a more radical political economy of care. Mary Jean Hande and Christine Kelly (2015) argue that in contemporary disability politics, issues of care are taken up via discourses of “inclusion”, “accessibility”, and “daily living supports” in ways that erase the material effects of living with disabilities. Issues of care have become a multi-million business such that according to McRuer (2006), disability has now become ‘corporealized, destigmatized, identified, and integrated … (out and proud) into the circuits of global capital’ (p. 274; original emphasis) and this has resulted in disabled Bodyminds being placed into involuntarily into nursing homes and/or state institutions and medicalised against their will, leading to increased “state securitisation and incarceration” of disabled Bodyminds. As a result, some of the most thoughtful critiques of care have come from disability studies scholars, like Hande and Kelly (2015), for example, who have also focused on the how the “legacies of care” have also historically been structured by exploitive and oppressive relations ‘from subtle coercions played out on the microscale between disabled people and those who support them, to mass institutionalization of disabled bodies undertaken in the name of ‘caring for’ people with disabilities [as well as] the exploitive structures that coerce women, especially women of colour into racialized and gendered servitude’ (p. 963). Adding to this rich body of work on care and its critique, we want to add another dimension to the discussion on care – the material conditions within which “care” is both constructed as an urgent need and the conditions under which it is meted out. We are arguing that in the blatantly unequal context, “care” is valorised within a context of consumption where disabled tourists are (involuntarily) conscripted as profitable neoliberal subjects for transnational capitalism. We use the term “involuntarily” here to foreground the probing reach neoliberal practices have in all aspects of the relations of consumptions. We argue here that the neoliberal relations of consumption are enabled by the most violent and exploitative relations of production – a discussion that is rarely (if at all) engaged by radical theorists/activists both inside/outside the academy. Examining “care” via the productive relations of transnational capitalism takes on a distinctly imperialist/neo-colonial turn within the broader context of Empire if (or rather when) Critical Disability Studies/Crip Theory and other radical theories begin to engage the historical contexts where actual sites of “care” (or the lack thereof) become “normalised” sites of violence. For example, we are witnessing the violence unfolding in the Gaza Strip, mediated by the tense relationships between Palestinian territories and Israeli settlements. Moreover, these normalised sites of violence – also

Racialised and gendered ableism

45

known formally as “national borders” – become unremarked sites where the conditions for care as an urgent need proliferate with disability as a natural/normal outcome of such violent exclusion and differential access. A similar argument could be made when describing the US Mexican Border where unaccompanied immigrant children without documentation are being herded out of deplorable immigration detention centres where they had been earlier warehoused for deportation even while being subject to unimaginable physical and emotional stresses – another example of disability proliferation at the intersection of race, nation, imperialism, exploitative labour, antagonistic class relations, and profit. Here, once again, the discourse of care is bandied about as an argument against involuntary incarceration that is not limited to the locale of prisons, asylums, nursing homes, and institutions but should also include immigration detention centres, border control policies, etc. (see Mirza’s (2010) research on disabled refugees) that are connected to the violent political economy of globalisation that enables capital to cross borders with impunity but not racialised labour (see also in this book: Yeo and Afeworki Abay). More importantly, we argue that issues of access have to also be committed to critically engaging the transnational political and economic conditions that require labouring Bodyminds to cram themselves in over-heated closed spaces, stagger across the burning sands threatened by trigger-hungry vigilantes, or cling desperately to inner tubes across stormy oceans. In these contexts, lack of care is not just a gross denial of one’s human rights as global citizens. It is also an instrument of physical harm, disappearance, and even death (Afeworki Abay and Hutson, 2024). In their brilliant essay, Decolonization is not a metaphor, Eve Tuck and Wayne Yang (2012) argue that settler colonialism is also rooted in a material violence that exceeds affect. They write: [M]any Indigenous peoples have been forcibly removed from their homelands onto reservations, indentured, and abducted into state custody, signalling the form of colonization as simultaneously internal (via boarding schools and other biopolitical modes of control) and external (via uranium mining on Indigenous land in the US Southwest and oil extraction on Indigenous land in Alaska) with a frontier (the US military still nicknames all enemy territory “Indian Country”) (p. 5). Citing Dennis Childs, they argue that ‘the slave ship and the plantation’ and not Bentham’s panopticon as presented by Foucault operated as spatial, racial, and economic templates for subsequent models of coerced labour and human warehousing - as America’s original prison industrial complex’ (p. 35). Refusing the facile embrace of decolonisation as metaphor, Tuck and Yang call for a rejection of all premature attempts at reconciliation. Instead, their demand is simple; Decolonisation specifically requires the repatriation of Indigenous land. To that we would add, it

46

Nirmala Erevelles and Robel Afeworki Abay

also requires an end to oppressive and exploitative class relations that legitimate the persistent and pervasive epidemics of violence. In honour of all those whose lives have been lost in the violent epidemics, we therefore call on us all to actively work towards disability futures, across borders, beyond metaphor, beyond affect, beyond innocence, and towards a transformative political economy of care. Note 1 Concurring with Sami Schalk (2018), we use the term Bodyminds to overcome the colonial and binary constructions of the intricate and often inseparable relationship between the body and the mind. Bodyminds highlights how the physical and the mental are inseparably intertwined to one another in the context of race, disability, and gender.

References Afeworki Abay, R. (2019) ‘Disabled BIPoC: Intersectional analysis of ethnic disparities in contemporary education and labour market in Germany’, EPRIE Journal for Regional Integration in East Asia and Europe. Available online at: https://eprie.net/wp-content/uploads/2021/01/EPRIE-Journal-2019.pdf. Afeworki Abay, R. (2022) ‘Rassismus und Ableism: Same, same but different? Intersektionale Perspektiven und konviviale Visionen auf Erwerbsarbeit in der Dominanzgesellschaft’, in: B. Konz, and A. Schröter (eds.), DisAbility in der Migrationsgesellschaft: Betrachtungen an der Intersektion von Behinderung, Kultur und Religion in Bildungskontexten. Bad Heilbrunn: Klinkhardt, pp. 93–110. Afeworki Abay, R., and Wechuli, Y. (2022) ‘We are here, because you were there: Necropolitics as a critical framework for analysing the complex relationship between colonialism, forced migration and disability’, in: A. Delic, I. Kourtis, O. Kytidou, S. Sarkodie-Gyan, U. Wagner, and J. Zölch (eds.), Globale Zusammenhänge, lokale Deutungen. Kritische Positionierungen zu wissenschaftlichen und medialen Diskursen im Kontext von Flucht und Asyl. Wiesbaden: Springer VS, pp. 25–36. Afeworki Abay, R., Schülle, M., and Wechuli, Y. (2021) ‘Decolonizing disability: Eine postkoloniale Reflexion auf Behinderung für die deutschsprachige Fluchtmigrationsforschung unter Berücksichtigung der intersektionalen Lebensrealitäten’, in: M. Bach, L. Narawitz, J. Schröder, M. Thielen, and N.-M. Thönneßen (eds.), FluchtMigrationsForschung im Widerstreit – Über Ausschlüsse durch Integration. Münster: Waxmann, pp. 117–130. Afeworki Abay, R., and Hutson, C. (2024, forthcoming) ‘“Our tears are not for sale!”: Die hegemoniale Wissensordnung des Rassismus in Deutschland dekolonisieren’, in: M. Ates, A. Barboza, C.Hubatschke, M.Rodríguez, and R. Sonderegger (eds.), De
/Kolonisierung des Wissens. Vienna: Vienna University Press. Agamben, G. (2005) State of exception. Chicago, IL: University of Chicago Press. Alexander, M. J., and Mohanty, C. T. (eds.) (1997) Feminist genealogies, colonial legacies, democratic futures. New York, NY: Routledge. Annisette, M., and Prasad, A. (2016) ‘Critical accounting research in hyper-racial times’, Critical Perspectives on Accounting, pp. 5–19. 10.1016/j.cpa.2016.06.002. Arnold, S. (2018) ‘Which side are you on? Zum schwierigen Verhältnis von Antisemitismus und Rassismus in der Migrationsgesellschaft’, in: N. Foroutan, C. Geulen, S. Illmer, K. Vogel, and S. Wernsing (eds.), Das Phantom “Rasse”. Zur Geschichte und Wirkungsmacht von Rassismus. Köln: Böhlau, pp. 189–202.

Racialised and gendered ableism

47

Attia, I. (2013) ‘Rassismusforschung Trifft auf Disability Studies: Zur Konstruktion und Marginalisierung von “Fremdheit” und “Behinderung” als Andere’, Ringvorlesung “Behinderung ohne Behinderte?! Perspektiven der Disability Studies”. Universität Hamburg. Available at: http://www.zedis-ev-hochschule-hh. de/files/attia_rassismusforschung_ds.pdf Bailey, M., and Mobley, I. A. (2019) ‘Work in the intersections: A black feminist disability framework’, Gender & Society, 33(1), pp. 19–40. Ben-Moshe, L., and Magaña, S. (2014) ‘An introduction to race, gender, and disability: Intersectionality, disability studies, and families of color’, Women, Gender, and Families of Color, 2(2), 105–114. Berghs, M., and Dyson, S. M. (2020) ‘Intersectionality and employment in the United Kingdom: Where are all the Black disabled people?’, Disability & Society, 37(4), pp. 543–566. Berlant, L. (2007) ‘Slow death (sovereignty, obesity, lateral agency)’, Critical Inquiry, 33(4), pp. 754–780. Blauner, R. (1969) ‘Internal colonialism and ghetto revolt’, Social Problems, 16(4), 393–408. Braxton, S. (2014) ‘Kind of Blue: Contextualizing the Ebola crisis, humanitarian imperatives and structural deficits’, Truthout. Available at: https://truthout.org/ articles/kind-of-blue-contextualizing-the-ebola-crisis-humanitarian-imperativesand-structural-deficits/ Burch, S. (2014) ‘Dislocated histories: The Canton Asylum for insane Indians’, Women, Gender, and Families of Color, 2(2), pp. 141–162. Campbell, F. K. (2009) Contours of ableism: The production of disability and abledness. Basingstoke: Palgrave Macmillan. Chaudhry, V. (2019) ‘Disability in and through rural worlds revolt’. Available at: http://somatosphere.net/2019/disability-in-and-through-rural-worlds.html/ Coloma, R. S. (2013) ‘Empire: An analytical category for educational research’, Educational Theory, 63(6), pp. 639–658. Crenshaw, K. W. (1991) (1989) ‘Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine’, University of Chicago Legal Forum, 139, pp. 139–168. Crenshaw, K. W. (1991) ‘Mapping the margins: Intersectionality, identity politics, and violence against women of color’, Stanford Law Review, 43(6), pp. 1241–1299. El-Lahib, Y. (2015) ‘The inadmissible “other”: Discourses of ableism and colonialism in Canadian immigration’, Journal of Progressive Human Services, 26(3), pp. 209–228. El-Lahib, Y., and Wehbi, S. (2012) ‘Immigration and disability: Ableism in the policies of the Canadian state’, International Social Work, 55(1), pp. 95–108. Erevelles, N., and Morrow, M. (2022) ‘Introduction: Intersectionality’, in: M. Rioux, J. Viera, A. Buettgen, and E. Zubrow (eds.), Handbook of disability: Critical thought and social change in a globalizing world. Toronto, ON: Springer. Erevelles, N. (2011a) Disability and difference in global contexts: Enabling a transformative body politic. New York, NY: Palgrave Macmillan. Erevelles, N. (2011b) ‘The color of violence: Reflecting on gender, race, and disability in wartime’, in: K. Q. Hall (ed.), Feminist disability studies. Bloomington, IN: Indiana University Press, pp. 117–135. Erevelles, N. (2014) “Crippin’ Jim Crow: Disability, dis-location, and the school-toprison pipeline”, in: L. Ben-Moshe, C. Chapman, and A. Carey (eds.), Disability incarcerated: Imprisonment and disability in the United States and Canada. New York, NY: Palgrave Macmillan, pp. 81–99. Fanon, F. (1967) Black skin, white masks. New York, NY: Grove Press. Getachew, A. (2019) Worldmaking after Empire: The rise and fall of selfdetermination. Princeton, NJ: Princeton University Press.

48

Nirmala Erevelles and Robel Afeworki Abay

Gilroy, P., Sandset, T., Bangstad, S., and Høibjerg, G. R. (2019) ‘A diagnosis of contemporary forms of racism, race and nationalism: A conversation with Professor Paul Gilroy’, Cultural Studies, 33(2), pp. 173–197. Goodley, D. (2014) Dis/ability studies: Theorising disablism and ableism. New York, NY: Routledge. Goodley, D., and Lawthorn, R. (2019) ‘Critical disability studies, Brexit and Trump: A time of neoliberal-ableism’, Rethinking History, 23(2), pp. 233–251. Gorman, R. (2016) ‘Disablement in and for itself: Toward a ‘global’ idea of disability’, Somatechnics, 6(2), pp. 249–261. Gutiérrez Rodríguez, E. (2018) ‘The coloniality of migration and the “refugee crisis”: On the asylum-migration nexus, the transatlantic white European settler colonialism-migration and racial capitalism’, Refuge: Canada’s Journal on Refugees, 34(1), pp. 16–28. Hammonds, E. (1997) ‘Black W (holes) and the geometry of difference’, Feminism Meets Queer Theory, 6(2–3), pp. 136–156. Hande, M. J., and Kelly, C. (2015) ‘Organizing survival and resistance in austere times: Shifting disability activism and care politics in Ontario, Canada’, Disability & Society, 30(7), pp. 961–975. Hardt, M., and Negri, A. (2001) Empire. Cambridge, MA: Harvard University Press. Harriet Tubman Collective (2017) ‘Disability solidarity: Completing the vision for black lives’, Harvard Journal of African American Public Policy, pp. 69–72. Head, M. (2021) ‘At least 52 young workers perish in Bangladesh factory fire’, The World Socialist Web Site. Available at: https://www.wsws.org/en/articles/2021/07/ 10/bang-j10.html Holmes, S. (2013) Fresh fruit, broken bodies: Migrant farmworkers in the United States. Berkeley, CA: University of California Press. Hutson, C. (2007) ‘Schwarzkrank? Post/koloniale Rassifizierungen von Krankheit in Deutschland’, in: K.-N. Ha, N. Lauré al-Samarai, and S. Mysorekar (eds.), Re/ visionen. Postkoloniale Perspektiven von People of Color auf Rassismus, Kulturpolitik und Widerstand in Deutschland. Münster: Unrast, pp. 229–241. Hutson, C. (2010) ‘Mehrdimensional verletzbar: Eine Schwarze Perspektive auf Verwobenheiten zwischen Ableism und Sexismus’, in: J. Jacob, S. Köbsell, and E. Wollrad (eds.), Gendering Disability. Behinderung und Geschlecht in Theorie und Praxis. Bielefeld: transcript, pp. 61–72. Hutson, C. (2011) ‘Krankheit/Behinderung’, in: S. Arndt, and N. Ofuatey-Alazard (eds.), Wie Rassismus Aus Wörtern Spricht: (K)Erben des Kolonialismus im Wissensarchiv Deutscher Sprache: Ein Kritisches Nachschlagewerk. Münster: Unrast, pp. 403–411. Ineese-Nash, N. (2020) ‘Disability as a colonial construct: The missing discourse of culture in conceptualizations of disabled indigenous children’, Special Issue of the Canadian Journal of Disability Studies on “Sites and Shapes of Transinstitutionalization”, 9(3), pp. 26–51. Jack, G., Westwood, R., Srinivas, N., and Sardar, Z. (2011) ‘Deepening, broadening and re-asserting a postcolonial interrogative space in organization studies’, Organization, 18(3), pp. 275–302. Jugert, P., Kaiser, M. J., Laluna, F., and Civitillo, S. (2021) ‘Researching race
ethnicity in race
mute Europe’. Infant and Child Development, 31(1), pp. 1–9. Kafer, A. (2013) Feminist, queer, crip. Bloomington: Indiana University Press. Kaul, K. (2013) ‘Vulnerability, for example: Disability theory as extraordinary demand’, Canadian Journal of Women and the Law, 25(1), pp. 81–110. Kim, J. B., and Schalk, S. (2021) ‘Reclaiming the radical politics of self-care: A cripof-color critique’, South Atlantic Quarterly, 120(2), pp. 325–342.

Racialised and gendered ableism

49

Köbsell, S. (2019) “Disabled asylum seekers? … They don’t really exist. Zur Unsichtbarkeit behinderter Flüchtlinge im Hilfesystem und im behindertenpolitischen Diskurs”, in: M. Westphal, and G. Wansing (eds.), Migration, Flucht und Behinderung: Herausforderungen für Politik, Bildung und psychosoziale Dienste. Wiesbaden: Springer VS, pp. 63–80. Lee, J. (2021) ‘Background check: Investigating George Floyd’s criminal record’. Snopes, https://www.snopes.com/news/2020/06/12/george-floyd-criminal-record/ Mbembe, A. (2003) ‘Necropolitics’. Public Culture, 15(1), pp. 11–40. McRuer, R. (2006) Crip theory: Cultural signs of queerness and disability. New York: NYU Press. Meekosha, H. (2011). ‘Decolonising disability: Thinking and acting globally’. Disability and Society, 26, pp. 667–682. Mignolo, W. D. (2007) ‘Introduction: Coloniality of power and de-colonial thinking’, Cultural Studies, 21(2-3), pp. 155–167. Mirza, M. (2010) ‘Resettlement for disabled refugees’, Forced Migration Review, 35, pp. 30–31. Molina, N. (2006) ‘Medicalizing the Mexican: Immigration, race, and disability in the early-twentieth-century United States’, Radical History Review, 94, pp. 22–37. Moore, L. (2017) Black disabled art history 101. San Francisco, CA: Xochitl Justice Press. Nesher, T. (2013) ‘Israel admits Ethiopian women were given birth control shots’, Haaretz. Available at: https://www.haaretz.com/israel-news/2013-01-27/ty-article/. premium/ethiopians-fooled-into-birth-control/0000017f-f512-d044-adff-f7fb92c30000 Peralta, L., and K. Calamur (2014) ‘Ferguson documents: How the grand jury reached a decision’, National Public Radio (NPR). Available at: https://www.npr.org/ sections/thetwo-way/2014/11/25/366507379/ferguson-docs-how-the-grand-juryreached-a-decision. Pickens, T. A. (2019) Black madness: Mad blackness. Durkheim: Duke University Press. Pieper, M., and Haji Mohammadi, J. (2014) ‘Ableism and racism: Barriers in the labour market’, Canadian Journal of Disability Studies, 3(1), pp. 65–92. Pieper, M. (2016) ‘Assemblagen von Rassismus und Ableism. Selektive Inklusion und die Fluchtlinien affektiver Politiken in emergenten Assoziationen’, Movements Journal for Critical Migration and Border Regime Studies, 2(1), pp. 91–116. Pisani, M., Grech, S., and Mostafa, A. (2016) ‘Disability and forced migration: Intersections and critical debates’, in: S. Grech, and K. Soldatic (eds.), Disability in the global south. Cham: Springer, pp. 285–301. Prasad, A. (2014) ‘You can’t go home again: And other psychoanalytic lessons from crossing a neo-colonial border’, Human Relations, 67(2), pp. 233–257. Price, J., and Shildrick, M. (1999) Feminist theory and the body: A reader. New York, NY: Taylor & Francis. Puar, J. K. (2013) ‘Rethinking homonationalism’, International Journal of Middle East Studies, 45(2), pp. 336–339. Puar, J. K. (2017) The right to maim: Debility, capacity, disability. Durkheim: Duke University Press. Quijano, A. (2000) ‘Coloniality of power and Eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Quijano, A. (2007) ‘Coloniality and modernity/rationality’, Cultural Studies, 21(2), 168–178. Said, E. W. (1978) Orientalism. New York, NY: Vintage Books. Schalk, S. (2018) Bodyminds reimagined: (Dis)ability, race, and gender in Black women’s speculative fiction. Durheim: Duke University Press. Schalk, S. (2022) Black disability politics. Durkheim: Duke University Press.

50

Nirmala Erevelles and Robel Afeworki Abay

Smith, T. (2015) ‘America’s Ebola panic’, Slate. https://slate.com/technology/2015/ 10/ebola-panic-anniversary-predictions-of-a-u-s-epidemic-didnt-come-true.html Spillers, H. J. (1987) ‘Mama’s baby, papa’s maybe: An American grammar book’, Diacritics, 17(2), pp. 65–81. Spivak, G. C. (1988) Can the subaltern speak? Wien/Berlin: Turia & Kant. Steusse, A., and Dollar, N. (2020) ‘Who are America’s meal and poultry workers?’, Working Economic Blog. Economics Policy Institute. Available at: https://www. epi.org/blog/meat-and-poultry-worker-demographics/. Stienstra, D. (2002) ‘Disabling globalisation: Rethinking global political economy with a disability lens’, Global Society, 16(2), pp. 109–121. Tafesse, K. (2019) ‘What the ‘Mississippi Appendectomy’ says about the regard of the state towards the agency of black women’s bodies’, The Movement for Black Women’s Lives: Black Freedom Struggles. Available at: https:// blackwomenintheblackfreedomstruggle.voices.wooster.edu/2019/05/01/what-themississippi-appendectomy-says-about-the-regard-of-the-state-towards-the-agencyof-black-womens-bodies/ Titchkosky, T. (2007) Reading and writing disability differently: The textured life of embodiment. Toronto: University of Toronto Press. Tuck, E., and Yang, K. W. (2012) ‘Decolonization is not a metaphor’, Decolonization: Indigeneity, Education & Society, 1(1), pp. 1–40. Ulus, E. (2015) ‘Workplace emotions in postcolonial spaces: Enduring legacies, ambivalence, and subversion’, Organization, 22(6), pp. 890–908. Virdee, S. (2019) ‘Racialized capitalism: An account of its contested origins and consolidation’, The Sociological Review, 67(1), pp. 3–27. Washington, H. A. (2006) Medical apartheid: The dark history of medical experimentation on Black Americans from colonial times to the present. New York: Doubleday Books. Wischmann, A. (2018) ‘The absence of ‘Race’ in German discourses on Bildung. Rethinking Bildung with critical race theory’, Race Ethnicity and Education, 21(4), pp. 471–485. Yeo, R. (2015) “Disabled asylum seekers? … They don’t really exist: The marginalisation of disabled asylum seekers in the UK and why it matters”, Disability and the Global South, 2(1), pp. 523–550.

3

Trans-Latinidades, disability and decoloniality Diasporic and Global South LatDisCrit lessons from Central America Alexis Padilla

Introduction This chapter’s framing is grounded on intersectional decoloniality and interimperialism. As such, it stems from the innovative reimagining promoted by transnationalism studies (e.g., Moon, 2022) along with a fundamental reliance on what I call LatDisCrit (Padilla, 2021b, 2022a). I approach LatDisCrit as a scholar and activist of colour with disabilities from the Global South who resides and struggles in the Global North. LatDisCrit’s complexifying treatment of disability and race constitutes a paradigmatic expression of anti-ableist and anti-racist intersectional decoloniality. Hence, LatDisCrit privileges what I have called elsewhere inter-imperialism (Padilla, 2021a). Inter-imperialism is particularly salient to understand the unique kind of trans-Latinidades prevailing in the Central American transnational landscape. Unlike countries in South America or Mexico, most of Central American nation-building representations do not rest on heroic depicting of personalistic liberating caudillos (Cárdenas, 2018, especially ch. 2). Therefore, circumscribing one’s disability analysis to national narratives or macro-sociological dynamics of development, dependence or internal civil society components (Grech, 2015a; Meyers, 2019a) is likely to miss crucial decolonial intersectionality dimensions, particularly in terms of diasporic processes which characterise the global positioning of Central American identitarian and relational modes of interdependence in connection to inter-imperialist ways of becoming in the 21st century. This is probably why Grech (2015b) embraces that same year decoloniality in a different scholarly venue as constitutive of disability studies in the Global South through a much more explicit articulation of the various complexifying elements which I emphasise in the present chapter. Given my emphasis on inter-imperialism, I privilege analyses which elevate Central American diasporic experiences within the U.S. My aim is to take a look at the situation of immigrants from El Salvador. My preference would be to centre on disabled folks as much as possible, although the literature has seriously underplayed their existential interdependent presence and their decolonially informed diasporic plight. As I indicated, the unique disability intersectionality ethos for these disabled of colour transnational flows and DOI: 10.4324/9781003280422-4

52

Alexis Padilla

their relational networks of interdependence is yet to be examined explicitly through a decolonial framework blending anti-ableism and anti-racism modes of emancipatory learning and radical solidarity (Padilla, 2018, 2021b, 2022a). Like Guatemala, El Salvador underwent a peace process sponsored by United Nations in the 1990s. This feature positions the Central American region as one of the areas of the world where neo-colonial dynamics tend to be framed in terms of peace agreements or yet-to-be successful peace negotiations (as is currently the case with Nicaragua). However, El Salvador’s decolonial sociopolitics is unique. It is the only Central American nation subject to such peace processes which has subsequently experienced governmental regimes purportedly representing leftistI ideological tendencies (for a critical stance toward this perception of El Salvador, see, e.g., Cuellar, 2021a, 2021b; see also Gould, 2019). Due to space limitations, I only make peripheral references to the unique identitarian and colonising contexts of Costa Rica, Honduras and Panamá. I do so through the comprehensive complexifying lens of decolonial understandings of inter-imperialist legacies. These legacies are crucial. They impact processes of disablement (Oliver, 1990, 2009) and debility (Puar, 2017) in the region as well as in Global North inter-imperialist relational settings and sociopolitical networks of exploitation, hegemony and counter-hegemony (Abrego, 2008; Menjívar and Abrego, 2009). In the sections that follow, I focus on delimiting the conceptual scope of LatDisCrit, transmodernities, trans-Latinidades and inter-imperialism. Next, I dive into intersectional decoloniality and disability issues unique to Central American identitarian contexts. I pay special attention to the significance of diasporic and exilic dimensions linked to possibilitarian representations of utopia and justice-driven modes of trans-Latinx radical agency and radical solidarity unique to these intersectional groups of exilic decolonial subjects. Importantly, my use of the term possibilitarian throughout the chapter is conceptually congruent with the transgressive spirit of critical education scholars such as Henry Giroux and others (e.g., Giroux, 1983, 1996). As such, it intentionally avoids dwelling on mere lamentation or tragedy-driven conceptions of subalternity, fostering instead agentic resistance and imaginative ways to subvert colonising modes of oppression. I therefore conclude the chapter with Global South epistemology reflections, concentrating on the need to bridge Global North and Global South. I elevate existential matrices of intersectional decoloniality with respect to their anti-ableist and anti-racist collective action spheres uniquely relevant to Central American trans-Latinidades. As much as possible, I analyse their identitarian and diasporic contours within inter-imperialist contexts of “glocally” determined interdependent modes of relationality. Understanding LatDisCrit and inter-imperialism as race-based decolonial disability justice modes of counter-narrative theorising I have extensively theorised trans-Latinidades in the past few years (see Padilla, 2018, 2021b). My engagement with trans-Latinidades is at once

Trans-Latinidades, disability and decoloniality

53

methodological and theoretical. Methodologically speaking, one of the most important features of critical race theory, and LatCrit theory, in particular, is counter storytelling. This mode of counter-narrative is both methodological and epistemological. It simultaneously aims to disrupt dominant, normalising narratives and establish generalisable metatheoretical concepts or frameworks of relevance for situated emancipatory resistance in conjunction with subaltern actors. Among certain Latinx circles, Counterstories are also called testimonios (Flores and García, 2009). In the words of Moraga (2011), testimonios are theory in the flesh. They constitute what Gloria Anzaldua (1987) calls a form of autohisteoria. This means that they give a tangible sense of existential embodiment to conceptual and metatheoretical explorations. In other words, they are not mere testimonial, first-hand accounts of situations surrounded by serendipitous considerations without metatheoretical, epistemological or axiological value. Instead, their counternarrative power elevates situated emancipatory learning dimensions. Nevertheless, they are primarily comparative resistance exercises and multiple knowledge formulations aimed at enriching subaltern intersectionality and possibilitarian spaces for radical solidarity and change. The significance of examining LatDisCrit as an identitarian space of intersectional subalternity does not merely operate at the micro-level. It is not circumscribed to U.S. educational settings either (Padilla, 2022b, pp. 52–53). I am especially interested in trans-Latinidades as they play out by either fostering or at times hindering radical solidarity. This happens via what Vallega (2010, 2014) calls radical exteriority. The unique political philosophy notion of radical exteriority operates as an extreme kind of alterity which often alienates trans-Latinx subaltern subjects from their own identitarian selves. It creates racialised and internalised normalising patterns of ableism hierarchies in the ranking of their identitarian make-up elements. As such, it constitutes a sort of inner coloniality (e.g., Padilla, 2021b, chs. 6 and 9; see also Scribano, 2021, for extensive theorising of inner coloniality as a globalised phenomenon).II The counter-narrative power of LatDisCrit in action and Dussel’s transmodernities My idea of trans-Latinidades as connected to LatDisCrit in action is born from and parallels Dussel’s treatment of transmodernism/transmodernity (see, e.g., Alcoff, 2012; Dussel, 1985, 1995, 2008a, 2008b). Dussel’s notion is important because it bridges and complexifies the contours of the modernity/postmodernity dichotomy. Talking about Dussel and Mignolo, Alcoff (2012, pp. 66–67) claims that both of them formulate meta-languages … intellectual and political maps with aspirations to cover a wide territory, geographically and historically. But postmodernists do the same … Dussel and Mignolo are postmodern in this sense if

54

Alexis Padilla Lyotard and Deleuze are, and yet there is a difference. Lyotard and Deleuze are not as upfront about the normative aims of their metaambitions.) But the main point here is that Dussel is right to charge his critics with formalism: as if all meta-narrative forms are the same.

As applied in this chapter, the idea of fluid transmodernities allows one to understand how, in the identitarian horizons of trans-Latinidades, there is a transcontinental coexistence of African, Asian and uniquely American modes of subalternities which subvert the Eurocentric meta-narratives of what Maldonado-Torres (2007) calls coloniality of power, knowledge and being (see also Quijano, 2000, 2006; Quijano and Wallerstein, 1992). Therefore, Latinxness is conceived throughout the chapter as a possibilitarian justiceseeking third space (Soja, 1989; 1996; Waitoller and Annamma, 2017). This subaltern third space is made up of waves and wakes of converging diasporas. As such, it is dynamically constituted by what Young (2001) calls tri-continentalism (alluding to Africa, Asia and Latin America as neocolonial, sociopolitical spaces). Often, these diasporic waves and wakes are filled with mixtures of extreme violence and pockets of hope. They embody alterity. They are the very making and unmaking of continuous identitarian birth and rebirth. They work in their transmodern ways of being and becoming through border-crossing dynamicity. Blackness Studies are also indispensable to understand/explain the interimperialist legacies of coloniality which make up LatDisCrit’s contemporary manifestations of collective action as they unfold, for example, in Global North and Global South classrooms (Dei, 2017; Dei and Hilowle, 2018; Dei and McDermott, 2014). Even in trans-Latinx embodiments of indigeneity and mestizaje, one needs to consider the vestiges of anti-Black and ableist sentiments. They proliferate as micro-political, epistemological and sociocultural oppression (Padilla, 2021b, ch. 6; see also Gudmundson and Wolfe, 2010 for anti-Black dynamics specific to Central America). In the tri-continental making of trans-Latinidades, there are pervasive macro-political forces. For example, this multifaceted configuration of coloniality translates at the micro-level into internalised racism combined with deficit thinking and learned helplessness for most subaltern Latinx of colour with disabilities, their families or guardians and even for many of their self-proclaimed advocates. Not surprisingly, within Global North contexts, it is quite common for anti-Black sentiment to drive intra-Latinx interactions among communities and white-dominated disabled people organisations in these racialised settings (Padilla, 2021b, especially chs. 6 and 8). LatDisCrit, Trans-Latinidades and Global South decolonialities In sum, my theoretical application into LatDisCrit’s honouring of transLatinidades builds on a core premise: all meta-narratives are not the same. I take this a step further by exploring explicitly what each meta-narrative

Trans-Latinidades, disability and decoloniality

55

offers both at the micro- and macro-level of explanation and understanding. In the case of this chapter, this critical hermeneutic exercise serves to address intersectional decoloniality explorations of disability among Latinx Central Americans, both those in the Global South and those diasporic actors whose trans-Latinidades flow in a process of utopian becoming (Valdivia, 2017) within inter-imperialist contexts of colonial Global North normalcy impositions. On the other hand, LatDisCrit as a broader theoretical formulation aspires to bring in epistemologies of the Global South, i.e., knowledges born out of the very struggles of becoming (Santos and Meneses, 2020). I do so through a targeted focus on counterstories. These are core tools for embodied theorising. Their power resides in the intrinsic testimonial fluidity of counterstories (Moraga, 2011). In other words, they work by giving tangible existential embodiment to conceptual and metatheoretical dimensions. To be sure, therefore, LatDisCrit is a decolonial project. It is concerned with anti-racist and anti-colonial intersectional disability agency and justice. As such, it deals with both identity and alterity, operating in practice as the enfleshment of resistance and emancipation against subaltern marginalising discourses and actions. Through LatDisCrit I pursue (Padilla, 2021a, 2021b, 2022a) a critical integration of the literature strands associated with LatCrit theory (Bernal, 2002; Dávila and de Bradley, 2010; Solórzano and Bernal, 2001; Valdés, 1999, 2000; Valdés and Bender, 2022; Yosso, 2006) and DisCrit (Annamma, Connor, and Ferri, 2013, 2016; Annamma, Ferri, and Connor, 2019; Dávila, 2015). Both strands stress in their own way the significance of interrogating the interplay of race/ethnicity, diasporic cultures, historical sociopolitics and disability in conjunction to the multiple possibilities of Global South and Global North Latinx identities. Most of their explorations take place within Global North contexts. However, it is fair to say that Global South epistemologies are progressively becoming an important part of the emerging political embodiments enacted through LatDisCrit, especially among decolonial Latinx and intersectionally grounded critical feminist political philosophers (Alcoff, 2009; Calderón, 2014; Castro-Gómez, 2002, 2007; Mignolo, 2000; Mignolo and Tlostanova, 2006; Mignolo and Walsh, 2018; Sandoval, 2000; Wynter, 2003; Yosso, 2006). A note on inter-imperialism As for inter-imperialism, its role is to bridge the operationalisation of micro and macro dimensions of resistance against colonialities of power, knowledge and being (Maldonado-Torres, 2007). For example, if as Menjívar’s (2000) empirical work demonstrates Salvadoran transnational networks are often configured by broken links of relationality, how is it that they still provide a basic sense of articulation and identitarian reservoirs of hope and counter-hegemonic symbolism? Part of the answer resides in the way interimperialism opens hybrid avenues for this to be possible.

56

Alexis Padilla

The Global South/North divide is powerfully articulated through the ambiguous political economy and trans-identitarian contours of interimperialism. Inter-imperialism plays out in power and knowledge dimensions present in both sides of the transnational divide. Spaces of resistance in both Global South and Global North contexts are not immune to this ambiguous articulation. Rather, they are fully infused in their very emancipatory synergy by inter-imperialism’s hybrid possibilitarian spaces for both hegemony and counter-hegemony. In the inter-imperialist spaces observable in the Caribbean, for instance, this manifests through what Bakhtin (1986, 1990) had called decades ago heteroglossia. Structural and discourse heteroglossia (Bakhtin, 1986, 1990) in this particular case get expressed tangibly in the linguistic configuration of Creole language. Creole exists within a subversive mingling of old imperial languages (Portuguese, Spanish, French, English and Dutch) combined with African vestiges. Creole expresses the freedom of the oppressed to counteract the cannons of orthodoxy and aesthetics imposed by empires. It also expresses a sense of trans-geographical mobility that transgresses the imposed limits of imperial hegemony. Of course, it is not simply that speaking Creole provides a magic pathway to emancipation or intellectual sovereignty (Warrier, 1995). Rather, in the kinds of reality construction afforded by Creole, there are potential bases for opening innovative emancipatory resistance avenues. The enactment of this interaction between inter-imperialism and heteroglossia depends on two simultaneous forces: (1) a sustaining articulation gap; and (2) a crucial, often non-linear movement toward rupture with the vestiges of inter-imperialistic oppressions. The metaphor that Hall (1996) uses for representing this complex functional duality is that of an articulation. As in the body, articulations unite and divide. They at once bridge and demarcate. Their real force resides in not being as rigid as bones, in bridging, in not being core. Thus, they are especially vulnerable to ruptures and to the creative coordination of further subversive links and alterity-based spheres of mobilisation. In the sociopolitical, sociocultural and socio-historical contexts of LatDisCrit’s modes of inter-imperialism, these dual forces are at once generative and generated by inter-imperial immediacy and exchange. For instance, Latinx folks are in the borders of the imperial realities imposed by the United States, even if they do not reside within the limits of the American state. Yet, at the same time, the vestiges of many other empires are intrinsic to their identity and their sociopolitical embodiments of cultural and epistemological mestizaje (Castro-Gómez, 2005, 2007, 2008, 2011; Padilla, 2021a, 2022b). Interimperial proximity, continuity and discontinuity exacerbate what Edwards (2003) calls a “décalage” dimension of Diaspora. This refers to the superdiversity residues of untranslatable discourse as well as cultural, institutional, peoplehood/nationhood and structural perception differences which open the door to the uncertainty of concrete, context-based change articulation among various imperial actors. “The notion of articulation is crucial not just because it combines the structural and the discursive but also because it has a flip side:

Trans-Latinidades, disability and decoloniality

57

such societies structured in dominance are also the ground of cultural resistance” (Edwards, 2003, p. 12). Central American disabled trans-Latinidades: Interrogating the situated emancipation contours of intersectional diasporic decolonialities Los que ampliaron el Canal de Panamá (y fueron clasificados como ’silver rol? y no como ’gold roll), los que repararon la flota del Pacífico en las bases de California, los que se pudrieron en las cárceles de Guatemala, México, Honduras, Nicaragua, por ladrones, por contrabandistas, por estafadores, por hambrientos, los siempre sospechosos de todo (“me permito remitirle al interfecto por esquinero sospechoso y con el agravante de ser salvadoreño”) … (Dalton, as quoted by Menjívar, 2000, pp. 2–3)III These are the lines from a poem written by Roque Dalton who was himself assassinated by paramilitary groups in El Salvador in 1975. These lines open Menjívar’s (2000) book. They speak volumes about the decolonial complexities of differential disabled and non-disabled trans-Latinidades in Central America and beyond. It is not difficult to imagine many of these workers. It is not hard to imagine them as prisoners, as lumpen proletarian folks experiencing multiple forms of disablement (Oliver, 1990, 2009) and debilitating (Puar, 2017) progressions of incarnated precarity in what amounts to ineluctable processes of social exclusion. One notices the poem’s elevating of Salvadoran voices of complaint. However, this by no means represents the creation of some sort of competing social suffering rankings among trans-Latinx subaltern subjects from and within Central America. To me, this is fundamentally a decolonial testament, a poetic justice reclaiming of spaces for denouncing disabling injustices. Thus, it is a way to renew the performativity and aesthetics of knowledges born from intersectional fugitivity (Ben-Moshe, 2020; Coles et al., 2021; Padilla, 2021b, ch. 9). It is a decolonial poetic voice which speaks at the crossroads of race, exilic marginalisation/performative emotionality and almost ineluctable modes of debility/colonising disablement (De Sena and Scribano, 2020; Nguyen, 2015, 2019; Nguyen and Stienstra, 2021; Oliver and Barnes, 2012; Puar, 2017). Unlike El Salvador and other countries within Spanish-speaking Central America, Panamá is the exception. Its historical tradition ties directly to the so-called Bolivarian trans-Latinx heritage of Gran Colombia. One could also

58

Alexis Padilla

talk of the uniquely geopolitical and overly racialised case of Belize. Its interimperialist positionality is even more hybrid and therefore difficult to place as part of the trans-Latinx decolonial ethos. Yet in many ways, especially in conjunction to the notion of radical exteriority explored earlier in the chapter, Belize’s peoplehood fate is closely tied to that of trans-Latinx Central American Global South and diasporic subaltern subjects, including pan-disabled segments in terms of their extreme sense of abjection within the region and elsewhere in the Global North. The former members of the Central American Federation do not worship a nation-building past resting on the legacy of military caudillos (Booth, Wade, and Walker, 2009; Cárdenas, 2018). As implied in the introductory section of the chapter, this has immense inter-imperialist connotations. First, it opens alternative avenues for the performativity of nationalism, shaping contemporary propagandistic framing of inter-imperialist servitude. Cárdenas (2017) addresses the performative contours of this representational dimension of exilic transnationalism. She analyses the yearly Salvadoran performative engagement with the parade which celebrates/commemorates Central American Independence as experienced collectively and transversally by trans-Latinx Central Americans in Los Angeles, the largest Central American enclave among U.S. urban contexts. Alluding poignantly and precisely to the two exceptional nation-building cases I underscored in the preceding paragraph, i.e., Belize and Panamá, Cárdenas (2017, p. 136) stresses that it is noteworthy that in the U.S. Central American diaspora these two nations, which have no direct relationship to this date of independence, and in the case of Belize has had its own sovereignty constantly threatened by Guatemala, become symbolically incorporated into this collectivity … diasporic subjects are (re)articulating what they deem as Central American. Public performances like COFECA are important to this process … to reconfigure the borders of the Central American nation. Importantly, in using the language of (re)articulation (very much in the sense that Hall (1996) and Edwards (2003) use this term), Cárdenas’ showcasing of a tangible collective process of agentic representational realignment by racialised diasporic subaltern subjects illustrates the necessary interdisciplinary dialogue between fields like critical cultural studies and transnationalism, critical/ decolonial disability studies, trans-Latinx studies, critical race theory and so forth, especially in terms of the micro and macro enactments of a sociopolitical notion like inter-imperialism. In further underscoring this profound interdisciplinary synergy, Cárdenas immediately goes on to clarify that there are core limits to this agentic articulation process, a powerful reminder of the hegemonic forces at work in inter-imperialist dynamics. For instance, the parade floats of Belize and Panama, which are mostly composed of Afro-Central Americans, stand out as “exceptional” from the

Trans-Latinidades, disability and decoloniality

59

other Central American countries whose floats showcase predominantly mestiza/o subjects. In fact, like las fiestas patrias on the isthmus, the COFECA parade promotes a mythic and Utopian vision of cohesion and unity among Central Americans by minimising the contentious relations that permeate within national and ethno-racial populations (Cárdenas, 2017, p. 236; Chomsky, 2021; Portillo Villeda, 2021). Paradigmatically, this ethno-racial pattern of homogeneity works to take every possible advantage of moments where Blackness (Gudmundson and Wolfe, 2010; Portillo Villeda, 2021) and Indigenous embodied modes of racialisation can be made invisible, excluded and nullified. Likewise, a similar pattern is conspicuously present with respect to disability embodiments. I would be tremendously surprised if Cárdenas was able to spot any float showcasing disabled folks in this or any other nationalist parade. This is one of the few coincidental patterns one can observe when comparing South American and trans-American types of trans-Latinidades. But in the case of diasporic disabled Central Americans and other transLatinx subaltern subjects of colour in Global North contexts, these naturalising processes of invisibility are compounded by a dual directionality of social exclusion. The result is that these groups are literally left in a terrifying exilic limbo. In their unique situatedness vantage point, as Maldonado-Torres (2007) would say, power, knowledge and being modes of coloniality become existentially unbearable. Here, these three modes of coloniality translate into extreme forms of material precarity and a dramatic dignity-stripping vacuum of rights. These exilic subjects are citizens from nowhere (Minich, 2014). The large majority of them are undocumented.IV In most instances, they do not even qualify as refugees (for a relevant decolonial comparison, see, e.g., the neo-Marxian application of the concept of multitude by Mitchell and Snyder (2010) which elevates possibilitarian spaces of agency in conjunction to disabled South Asian refugee groups in U.S. contexts). Nobody cares for them. They do not qualify for anything that neo-liberal spaces of charity-like welfare institutions and religious organisations are willing to share, often with all sorts of enslaving/neo-colonising strings attached. In other words, they are nationless yet intersectionally subject to the same racialised, gendered and class-based modes of oppression which make the lives of trans-Latinx citizens dramatically experienced at the edge of survival, at the limits and emancipatory possibilities for resistance, radical solidarity and agentic self-promotion. The task may seem unsurmountable. Nevertheless, I still feel determined to leave the reader at the end of this section with a possibilitarian flavour of hope, or, as black theologian Joseph R. Winters (2016) would put it, within “unhopeful but not hopeless” interstices of emancipatory radical solidarity. Disabled Central American and other trans-Latinx folks have families. As a first catalysing step toward change, they need to realise that quite often, many of these diasporic family members are also at the root of the sort of internalised normalising modes of racialised ableism and neo-coloniality.

60

Alexis Padilla

This isolates and paralyses the sense of agentic intersectionality for these nonetheless powerfully agentic collectivities (on this, consider Mitchell and Snyder, 2019, although their discussion of agency does not elevate as much issues of intersectional decoloniality). This would presuppose galvanising these groups around the profound sense of interdependence that defines their reciprocal predicaments and identitarian utopias. On the ambivalent yet galvanising power of evolving utopias for Latinx populations in Global North contexts, see Valdivia (2017). Valdivia’s discussion places the locus of utopian configurations in the representational outputs of Latinx mass media which, as the reader can imagine, are plagued with ableist constructs. To my knowledge, there is not an illustration of media outlets owned and controlled by disabled Latinx of colour, diasporic or otherwise in Global North contexts (much less in the Global South). These diasporic disabled communities could have a very powerful decolonising force among Latinx populations. The kind of respectful, interdependent force I have in mind is one that would impact both their inter-imperialist (re)articulation potential in the Global North as well as their catalysing role for similar yet situated modes of mobilisations in the Global South. Thus, their attitude would need to be framed by cultural humility. In other words, they would need to avoid neo-colonialist appropriations and self-inflated modes of alienation which, in the long run, could do more damage than good. For broader examples of this distorted tendency in non-governmental organisations of disabled and non-disabled groups, see Choudry (2008, 2010a, 2010b, 2011, 2012); Choudry and Shragge (2011); and Meyers (2014, 2016, 2019b). Concluding remarks: Epistemological/axiological notes on the need to bridge Global North and Global South existential matrices of intersectional decoloniality, embodied anti-ableism and anti-racism This chapter has framed the liberatory decolonial intersectionality spaces of epistemology and axiology afforded by LatDisCrit. It has explored the crossroads off race-based dimensions of trans-Latinxness and anti-ableist struggles in mostly diasporic Global North contexts inhabited by Central American subaltern subjects. Due to reasons of space, the chapter has singled out illustrative dimensions which pertain specifically to Salvadoran diasporic disabled trans-Latinx segments of the population in the U.S. Yet, in doing so, the aim is to elevate transnational disability justice built upon the articulation mechanisms left open by inter-imperialist dynamics of rupture and potential counter-hegemonic spaces for emancipatory learning and fugitive knowledge formulation, renewal and dissemination (Ben-Moshe, 2020; Coles, 2021; Padilla, 2018, 2021b). The relational and transformational inertia of these knowledges must be translated into tangible, bidirectional Global North and Global South movement-building strategies with and for disabled trans-Latinx of colour.

Trans-Latinidades, disability and decoloniality

61

This could be done with a particular focus on the plight of Black and Indigenous Latinx with disabilities in either side of the global coloniality divide. As agentic decolonial change agents, their unique intersectional invisibility and social exclusion plight make them paradoxically the most powerful radical solidarity anchors for transformational forms of emancipatory learning as well as fugitive knowledge creation, constant renewal out of the heart of collective struggles and authentic hobs for traction/dissemination of innovative ideas and actionable collective endeavours. This bidirectional fugitive knowledge inertia, in turn, can impact dimensions of interdependence at the micro level of interaction. It can also promote deeply decolonising awareness raising approaches for “sentipensante” authentic caring within and across families and communities where disabled Latinx of color reside (Fals Borda, 2016; Hernández-Sácá and Cannon, 2019; Rector-Aranda, 2019; Sosa-Provencio et al., 2020). Namely, it can awaken a genuine sense of radical decolonial solidarity (Gaztambide-Fernández, 2012). Meanwhile, this incremental process of transformational collective awakening can also serve to catalyse the macro-level forces of rupture and transgression embedded within inter-imperialism for transnational movement building and civil society traction and reenergising from the ground up (Choudry, 2012; Malhotra, 2017). Yet, as indicated in the previous section, this demands an intrinsic sense of mutual respect and cultural humility. The aim of this kind of watchful interdependent knowledge work from both sides of the global divide is to constantly tackle the prevention of neo-colonial modes of oppression driven by metropolis-centred kinds of hegemonic inter-imperialism which in this latter case would probably be disguised under non-profit or NGO/pseudo grassroots intersectional disability justice attire. Notes I The recent election of President Bernardo Arévalo in Guatemala might seem to contradict this statement. Nonetheless, one must remember that the Semilla platform which backed Arévalo’s candidacy has a political trajectory that differs radically from that of the FMLN in El Salvador. The Semilla platform has emerged as an activist movement, not as the political arm of a former guerrilla organization, raising different types of expectations. The Arévalo administration is too new. Its historical record is still waiting to be written. II Nevertheless, up until now, I have not had a chance to test existentially the analytical power of this notion of trans-Latinidades in contexts different to those forms of disabled Latinidades familiar to me. As a South American scholar, I feel humbled by the privilege of exploring Central American trans-Latinidades which have served to sharpen my own preconceived ideas about LatDisCrit decolonial enactments of inter-imperialist resistance, hegemony and counter-hegemony. I acknowledge here with grateful delight the valuable dialogical space opened most generously by Salvadoran transnationalist scholar Maritza Cárdenas in this regard. Through poignant references and thoughtful insights, Dr. Cárdenas has challenged and enriched my creative sense of emancipatory learning and intersectional/interdependent agency.

62

Alexis Padilla

IIII Those who widened the Panama Canal (and were on the “silver roll” not the “gold roll”), those who repaired the Pacific fleet in California bases, those who rotted in prisons in Guatemala, Mexico, Honduras, Nicaragua, for stealing, smuggling, swindling, for starving, those always suspected of everything (“Allow me to place him in your custody for suspicious loitering aggravated by the fact of being Salvadoran”) … (Portions of Roque Dalton’s Poema de Amor as rendered in Menjívar’s English translation; reprinted by permission). IV See, e.g., the essays in Abrego and Negrón-Gonzales (2020) for an extended discussion of identitarian or other significant dimensions of neo-coloniality faced by educated undocumented individuals in the U.S., whose predicament can in several respects be seen as highly privileged when compared with the sorts of disabled trans-Latinx groups highlighted in this section.

References Abrego, L. (2008) ‘Legitimacy, social identity, and the mobilization of law: The effects of Assembly Bill 540 on undocumented students in California’, Law & Social Inquiry 33(3), pp. 709–734. Abrego, L. J., and Negrón-Gonzales, G. (eds.) (2020) We are not dreamers: Undocumented scholars theorise undocumented life in the United States. Durham, NC: Duke University Press. Alcoff, L. M. (2009) ‘Comparative race, comparative racisms’, in J. J. E. Gracia (ed.) Race or ethnicity? On Black and Latino identity. Ithaca, NY: Cornell University Press. Alcoff, L. M. (2012) ‘Enrique Dussel’s transmodernism’, Transmodernity: Journal of Peripheral Cultural Production of the Luso-Hispanic World, 1(3). Available at: https://escholarship.org/uc/item/58k9k17t Annamma, S. A., Connor, D. J., and Ferri, B. A. (2013) ‘Dis/ability critical race studies (DisCrit): Theorising at the intersections of race and dis/Ability’, Race, Ethnicity and Education, 16(1), pp. 1–31. Annamma, S. A., Connor, D. J., and Ferri, B. A. (eds.) (2016) Discrit: Disability studies and critical race theory in education. New York, NY: Teachers College Press. Annamma, S. A., Ferri, B. A., and Connor, D. J. (2019) ‘Cultivating and expanding disability critical race theory (DisCrit)’, in K. Ellis, R. Garland-Thomson, M. Kent, and R. Robertson (eds.) Manifestos for the future of critical disability studies. New York, NY: Routledge. Available at: www.bookshare.org. Anzaldúa, G. (ed.) (1987) Borderlands/La Frontera: The New Mestizo. San Francisco, CA: Spinsters/Aunt Lute. Bakhtin, M. (1986) ‘The problem of speech genres’, in Speech genres and other late essays. Austin: University of Texas Press, pp. 60–102. Bakhtin, M. (1990) Art and answerability: Early philosophical essays. Austin: University of Texas Press. Ben-Moshe, L. (2020) Decarcerating disability: Deinstitutionalization and prison abolition. Minneapolis, MN: University of Minnesota Press. Bernal, D. D. (2002) ‘Critical race theory, LatCrit theory, and critical race-gendered epistemologies: Recognizing students of color as holders and creators of knowledge’, Qualitative Inquiry, 8(1), pp. 105–126. Booth, J. A., Wade, C. J., and Walker, T. W. (2009) Understanding Central America: Global forces, rebellion, and change. New York, NY: Westview Press. *Calderón, D. (2014) ‘Anticolonial methodologies in education: Embodying land and indigeneity in Chicana feminisms’, Journal of Latino/Latin American Studies, 6, pp. 81–96.

Trans-Latinidades, disability and decoloniality

63

Cárdenas, M. E. (2017) ‘Performing Centralamericanismo: Isthmian identities at the COFECA Independence Day Parade’, in K. O. Alvarado, A. I. Estrada, and E. E. Hernández (eds.) U.S. Central Americans: Reconstructing memories, struggles, and communities of resistance. Tucson, AZ: The University of Arizona Press, pp. 127–143. Cárdenas, M. E. (2018) Constituting Central American Americans: Transnational identities and the politics of dislocation. New Brunswick, NJ: Rutgers University Press. Castro-Gómez, S. (2002) ‘The social sciences, epistemic violence and the problem of the “Invention of the Other”’, Nepantla: Views from the South, 3(2), pp. 269–285. Castro-Gómez, S. (2005) La Hybris del Punto Cero: Ciencia, Raza e Ilustración en la Nueva Granada (1750–1816). Bogotá: Pontificia Universidad Javeriana. Castro-Gómez, S. (2007) ‘The missing chapter of empire: Postmodern reorganization of coloniality and post-Fordist capitalism’, Cultural Studies, 21(2-3), pp. 428–448. Castro-Gómez, S. (2008) ‘Michel Foucault y la Colonialidad del Poder’, in M. Moraña (ed.) Cultura y Cambio Social en América Latina. Frankfurt: Iberoamericana/Vervuert, pp. 209–232. Castro-Gómez, S. (2011) Crítica de la Razón Latinoamericana. 2nd edn. Bogotá: Pontificia Universidad Javeriana. Chomsky, A. (2021) Central America’s forgotten history: Revolution, violence, and the roots of migration. Boston, MA: Beacon Press. Choudry, A. (2008) NGOs, social movements and anti-APEC activism: A study in knowledge power and struggle. Ph.D. thesis. Montreal: Concordia University. Choudry, A. (2010a) ‘What’s left? Canada’s ‘global justice’ movement and colonial amnesia’, Race and Class, 52(1), pp. 97–102. Choudry, A. (2010b) ‘Global justice? Contesting NGOisation: Knowledge politics and containment in antiglobalisation networks’, in A. Choudry and D. Kapoor (eds.) Learning from the ground up: Global perspectives on social movements and knowledge production. New York, NY: Palgrave Macmillan, pp. 17–34. Choudry, A. (2011) ‘On knowledge production, learning and research in struggle’, Alternate Routes, 23, pp. 175–194. Choudry, A. (2012) ‘Building counter-power from the ground up: Contesting NGOisation through social movement learning and knowledge production’, in B. L. Hall, D. E. Clover, E. Scandrett, and J. Crowther (eds.) Learning and education for a better world: The role of social movements. Rotterdam: Sense, pp. 141–154. Choudry, A., and Shragge, E. (2011) ‘Disciplining dissent: NGOs and community organisation’, Globalisations, 8(4), pp. 503–517. Coles, J. A. et al. (2021) ‘Fugitivity and abolition in educational research and practice: An offering’, Equity & Excellence in Education, 54(2), pp. 103–111. Cuellar, J. (2021a) ‘How to read Equipo Maíz: Cartooning the political in El Salvador’, Radical History Review, 141, pp. 176–202. Available at: 10.1215/0163 6545-9170780 Cuellar, J. (2021b) ‘There is no democratic tradition in El Salvador’, El Faro, 8 May. Available at: https://elfaro.net/en/202105/columns/25471/There-Is-No-DemocraticTradition-in-El-Salvador.htm. Dávila, B. (2015) ‘Critical race theory, disability microaggressions and Latina/o student experiences in special education’, Race, Ethnicity and Education, 18(4), pp. 443–468. Dávila, E. R., and de Bradley, A. A. (2010) ‘Examining education for Latinas/os in Chicago: A CRT/LatCrit approach’, Educational Foundations, 24(1), pp. 39–58. De Sena, A., and Scribano, A. (2020) Social policies and emotions: A look from the Global South. Cham: Springer.

64

Alexis Padilla

Dei, G. J. (2017) Reframing blackness and black solidarities through anti-colonial and decolonial prisms. Cham: Springer. Dei, G. J., and Hilowle, S. (eds.) (2018) Cartographies of race and social difference. Cham: Springer. Dei, G. J., and McDermott, M. (eds.) (2014) Politics of anti-racism education: In search of strategies for transformative learning. New York, NY: Springer. Dussel, E. (1985) Philosophy of liberation. Translated by A. Martínez and C. Morkovsky. Maryknoll, NY: Orbis. Dussel, E. (1995) The invention of the Americas: Eclipse of ‘the Other’ and the myth of modernity. Translated by M. D. Barber. New York, NY: Continuum. Dussel, E. (2008a) ‘Philosophy of liberation, the postmodern debate, and Latin American studies’, in M. Moraña, E. Dussel, and C. A. Jáuregui (eds.) Coloniality at large: Latin America and the postcolonial debate. Translated by R. Bermúdez. Durham, NC: Duke University Press, pp. 335–349. Dussel, E. (2008b) Twenty theses on politics. Translated by G. Ciccariello-Maher. Durham, NC: Duke University Press. Edwards, B. H. (2003) The practice of diaspora: Literature, translation, and the rise of black internationalism. Cambridge, MA: Harvard University Press. Fals Borda, O. (2016) Una Sociología Sentipensante para América Latina. México, D.F.: Siglo XXI. Flores, J., and García, S. (2009) ‘Latina testimonios: A reflexive, critical analysis of a ‘Latina space’ at a predominantly white campus’, Race Ethnicity and Education, 12(2), pp. 155–172. Available at: doi: 10.1080/13613320902995434. Gaztambide-Fernández, R. A. (2012) ‘Decolonization and the pedagogy of solidarity’, Decolonization: Indigeneity, Education and Society, 1(1), pp. 41–67. Giroux, H. A. (1983) ‘Theories of reproduction and resistance in the new sociology of education: A critical analysis’, Harvard Educational Review, 53(3), pp. 257–293. *Giroux, H. A. (1996) Fugitive cultures: Race, violence, and youth. New York, NY: Routledge. Gould, G. (2019) Solidarity under siege: The Salvadoran labor movement, 19701990. New York, NY: Cambridge University Press. Grech, S. (2015a) Disability and poverty in the Global South. Renegotiating development in Guatemala. New York, NY: Palgrave. Grech, S. (2015b) ‘De-colonising Eurocentric disability studies: Why colonialism matters in the disability and Global South debate’, Journal for Study of Race, Nation and Culture, 21, pp. 6–21. Available at: http://www.tandfonline.com/doi/ abs/10.1080/13504630.2014.995347. Gudmundson, L., and Wolfe, J. (2010) Blacks and blackness in Central America: Between race and place. Durham, NC: Duke University Press. Hall, S. (1996) ‘Race, articulation, and societies structured in dominance’, in H. A. Baker, M. Diawara, and R. H. Lindeborg (eds.) Black British cultural studies: A reader. Chicago, IL: University of Chicago Press, pp. 25–42. Hernández-Sácá, D., and Cannon, M. A. (2019) ‘Interrogating disability epistemologies: Towards collective dis/ability intersectional emotional, affective and spiritual autoethnographies for healing’, International Journal of Qualitative Studies in Education, 32(3), pp. 243–262. Available at: doi: 10.1080/09518398.2019.1576944. Maldonado-Torres, N. (2007) ‘On the coloniality of being: Contributions to the development of a concept’, Cultural Studies, 21(2–3), pp. 240–270. Malhotra, R. (2017) ‘The legal politics of Marta Russell: A Castoriadan reading’, in R. Malhotra (ed.) Disability politics in a global economy: Essays in honour of Marta Russell. New York, NY: Routledge, pp. 4–24. Menjívar, C. (2000) Fragmented ties: Salvadoran immigrant networks in America. Berkeley, CA: University of California Press.

Trans-Latinidades, disability and decoloniality

65

Menjívar, C., and Abrego, L. (2009) ‘Parents and children across borders: Legal instability and intergenerational relations in Guatemalan and Salvadoran families’, in N. Foner (ed.) Across generations: Immigrant families in America. New York, NY: New York University Press, pp. 160–189. Meyers, S. (2014) ‘Disabled Persons Associations at the crossroads of two organizational environments: Grassroots groups as part of an international movement and a local civil society’, Research in Social Science and Disability: Environmental Contexts and Disability, 8, pp. 3–31. Meyers, S. (2016) ‘NGO-ization and human rights law: The CRPD’s civil society mandate’, Laws: Special Edition on Disability Human Rights Law, 5(2). Available at: doi: 10.3390/laws5020021. Meyers, S. (2019a) Civilizing disability society: The Convention on the Rights of Persons with Disabilities socializing grassroots disabled persons’ organisations in Nicaragua. New York, NY: Cambridge University Press. Meyers, S. (2019b) ‘Misrecognising persons with disabilities in the Global South: The need for a comparative disability studies framework’, in K. Ellis, R. GarlandThomson, M. Kent, and R. Robertson (eds.) Interdisciplinary approaches to disability: Looking towards the future. New York, NY: Routledge, pp. 200–209. Mignolo, W. D. (2000) Local histories/global designs: Coloniality, subaltern knowledges and border thinking. Princeton, NJ: Princeton University Press. Mignolo, W. D., and Tlostanova, M. (2006) ‘Theorising from the borders. Shifting to geo-and body-politics of knowledge’, European Journal of Social Theory, 9(2), pp. 205–221. Mignolo, W. D., and Walsh, C. E. (2018) On decoloniality: Concepts, analytics, praxis. Durham, NC: Duke University Press. Minich, J. A. (ed.) (2014) Accessible citizenships: Disability, nation, and the cultural politics of greater Mexico. Philadelphia, PA: Temple University Press. Mitchell, D. T., and Snyder, S. L. (2010) ‘Disability as multitude: Re-working productive labor power’, Journal of Literary & Cultural Disability Studies, 4(2), pp. 179–193. Available at: doi: 10.3828/jlcds.2010.14. Mitchell, D. T., and Snyder, S. L. (2019) ‘Low-level agency: Disability, oppression and alternative genres of the human’, in K. Ellis, R. Garland-Thomson, M. Kent, and R. Robertson (eds.) Manifestos for the future of critical disability studies. New York, NY: Routledge, pp. 190–199. Moon, S. (ed.) (2022) The flows of transnationalism: Questioning identities and reimagining curriculum. New York, NY: Routledge. Moraga, C. L. (2011) A Xicana codex of changing consciousness: Writings, 20002010. Durham, NC: Duke University Press. Nguyen, X. T. (2015) The journey to inclusion. Rotterdam: Sense/Brill. Nguyen, X. T. (2019) ‘Unsettling ‘inclusion’ in the Global South: A post-colonial and intersectional approach to disability, gender, and education’, in M. J. Schuelk, C. Johnstone, G. Thomas, and A. Artiles (eds.) The SAGE handbook of inclusion and diversity in education. London: Sage, pp. 28–40. Nguyen, X. T., and Stienstra, D. (2021) ‘Engaging girls and women with disabilities in the Global South: Beyond cultural and geopolitical generalizations’, Disability and the Global South, 8(2), pp. 2035–2052. Oliver, M. (1990) The politics of disablement. Basingstoke: Macmillan and St Martin’s Press. Oliver, M. (2009) Understanding disability: From theory to practice. 2nd edn. New York, NY: Palgrave Macmillan. Oliver, M., and Barnes, C. (2012) The new politics of disablement. London: Palgrave. Padilla, A. (2018) Race, disability, and the possibilities of radical agency: Toward a political philosophy of decolonial critical hermeneutics in Latinx Discrit. Ph.D.

66

Alexis Padilla

thesis. University of New Mexico. Available at: https://digitalrepository.unm.edu/ educ_llss_etds/96/. Padilla, A. (2021a) ‘Decoloniality, embodiment and othering emotionality: Deciding and countering the inter-imperialist foundations of intersectional abjection’, Revista Latinoamericana de Estudios sobre Cuerpos, Emociones y Sociedad, 37(13), pp. 89–99. Available at: http://www.relaces.com.ar/index.php/relaces/article/view/487 Padilla, A. (2021b) Disability, intersectional agency and Latinx identity: Theorising LatDisCrit. New York, NY: Routledge. Padilla, A. (2022a) ‘LatDisCrit: Exploring Latinx Global South DisCrit reverberations as spaces toward emancipatory learning and radical solidarity’, in S. A. Annamma, B. A. Ferri, and D. J. Connor (eds.) DisCrit expanded: Inquiries, reverberations and ruptures. New York, NY: Teachers College Press, pp. 147–162. Padilla, A. (2022b) ‘Rightful presence and the mythology of inclusive equity in U.S. school districts: Metatheoretical reflections from two LatDisCrit counterstories’, in T. A. Fowler (ed.) Countering the mythology of inclusion and wellness in schooling. Leiden: Brill/Sense, pp. 51–66. Portillo Villeda, S. G. (2021) Roots of resistance: A story of gender, race, and labor on the north coast of Honduras. Austin: University of Texas Press. Puar, J. K. (2017) The right to maim: Debility, capacity, disability. Durham, NC: Duke University Press. Quijano, A. (2000) ‘Coloniality of power, ethnocentrism and Latin America’, Nepantla: Views from the South, 1(3), pp. 533–580. Available at: doi: 10.1177/ 0268580900015002005 Quijano, A. (2006) ‘El ‘Movimiento Indígena’ y las Cuestiones Pendientes en América Latina’, Review (Fernand Braudel Center), 29(2), pp. 189–220. Available at: http://www.jstor.org/stable/40241660 Quijano, A., and Wallerstein, I. (1992) ‘Americanity as a concept, or the Americas in the modern world-system’, International Social Science Journal, 44, pp. 549–557. Available at: https://www.javeriana.edu.co/blogs/syie/files/Quijano-and-WallersteinAmericanity-as-a-Concept.pdf Rector-Aranda, A. (2019) ‘Critically compassionate intellectualism in teacher education: The contributions of relational–cultural theory’, Journal of Teacher Education, 70(4), pp. 388–401. Available at: doi: 10.1177/0022487118786714 Sandoval, C. (2000) Methodology of the oppressed. Minneapolis, MN: University of Minnesota Press. Santos, B. D. S., and Meneses. M. P. (2020) ‘Preface’, in B. D. S. Santos and M. P. Meneses (eds.) Knowledges born in the struggle: Constructing the epistemologies of the Global South, New York, NY: Routledge, pp. xv–xvii. Scribano, A. (2021) Colonization of the inner planet: 21st century social theory from the politics of sensibilities. New York, NY: Routledge. Soja, E. W. (1989) Postmodern geographies: The reassertion of space in critical social theory. New York, NY: Verso. Soja, E. W. (1996) Thirdspace. Cambridge, MA: Blackwell. Solórzano, D. G., and Bernal, D. D. (2001) ‘Examining transformational resistance through a critical race and Latcrit theory framework: Chicana and Chicano students in an urban context’, Urban Education, 36(3), pp. 308–342. Sosa-Provencio, M. A., Sheahan, A., Desai, S., and Secatero, S. (2020) ‘Tenets of body-soul rooted pedagogy: Teaching for critical consciousness, nourished resistance, and healing’, Critical Studies in Education, 61(3), pp. 345–362. Available at: doi: 10.1080/17508487.2018.1445653 Valdés, F. (1999) ‘Afterword, theorising ’OutCrit’ theories: Coalitional method and comparative jurisprudential experience - RaceCrits, QueerCrits and LatCrits’, University of Miami Law Review, 53, pp. 1265–1306.

Trans-Latinidades, disability and decoloniality

67

Valdés, F. (2000) ‘Race, ethnicity, and hispanismo in a triangular perspective: The ‘essential Latina/o’ and LatCrit theory’, UCLA Law Review, 48, pp. 1–41. Valdés, F., and Bender, S. W. (2022) LatCrit: From critical legal theory to academic activism. New York, NY: New York University Press. Valdivia, A. (2017) ‘Implicit utopias and ambiguous ethnics: Latinidad and the representational promised land’, in M. E. Cepeda (ed.) The Routledge companion to Latina/o media. New York, NY: Routledge. Available at: http://www. bookshare.org Vallega, A. A. (2010) ‘Out of Latin American thought from radical exteriority: Philosophy after the age of pernicious knowledge’, in D. W. Jones (ed.) The gift of logos: Essays in continental philosophy. Newcastle: Cambridge Scholars Publishing, pp. 143–162. Vallega, A. A. (2014) Latin American philosophy: From identity to radical exteriority. Bloomington, IN: Indiana University Press. Waitoller, F. R., and Annamma, S. A. (2017) ‘Taking a spatial turn in inclusive education’, in M. T. Hughes and E. Talbott (eds.) The handbook of research on diversity in special education. Hoboken, NJ: John Wiley and Sons, pp. 23–44. Warrier, R. A. (1995) Tribal secrets: Recovering American Indian intellectual traditions. Minneapolis, MN: University of Minnesota Press. Winters, J. R. (2016) Hope draped in black: Race, melancholy, and the agony of progress. Durham, NC: Duke University Press. Wynter, S. (2003) ‘Unsettling the coloniality of being/power/truth/freedom. Towards the human, after man, its overrepresentation: An Argument’, The New Centennial Review, 3(3), pp. 257–337. Yosso, T. J. (2006) Critical race counterstories along the Chicana/Chicano educational pipeline. New York, NY: Routledge. Young, R. J. C. (2001) ‘Preface: Sartre: The “African Philosopher”’, in Colonialism and Neocolonialism, Jean-Paul Sartre. New York, NY: Routledge, pp. 9–20.

4

Degeneracy and replacement Reproducing white settler anxieties in the 21st century Madi Day

Introduction Historically, categories of power have been siloed in Western thinking. Race, gender, sexuality, and disability have been treated as separate but overlapping issues that collide and create hybrid identities. This approach has dominated contemporary queer and gender studies (McCann and Monaghan, 2019), and in some cases, disability studies (Grech and Soldatic, 2015), and is often incorrectly labelled as intersectional. Black Studies, and particularly Black feminism, use Crenshaw’s theory of intersectionality (Crenshaw, 2017) to understand categories of power as reciprocally produced and co-constituted systemically (Hill Collins, 2015). Indigenous and anti-colonial studies veer away from intersectionality and instead articulate categories of power in relation to coloniality (Byrd, 2011). While other sociological disciplines treat categories of power as issues of interrelated epistemological and systemic violence, Indigenous and anti-colonial studies argue that this is made possible through ontological dominance imposed by colonialism. This means that scholarship by Indigenous and anti-colonial scholars is concerned with how race, gender, sexuality, and disability are made relevant despite culture, time, and place, and argues that this is only possible due to former and ongoing colonial occupation. In so-called Australia, whiteness and settler coloniality underlie any discussion of power. The continent has been dominated by a federated, majority white, settler state for 122 years and occupied by British colonists since 1788. So-called Australia is both preceded and resisted by Aboriginal and Torres Strait Islander peoples who have occupied the continent for at least 65,000 years and who continue to practice our respective cultures and ways of life despite significant and ongoing colonial intervention. In this sense, the shared experience of being an Aboriginal and Torres Strait Islander person (rather than belonging to one’s respective homelands, language, and family group), or being Indigenous, is not necessarily a social category like ethnicity or race – although, as Aboriginal scholar Bronwyn Carlson (2016) shows, colonisers also construct Indigeneity on their own terms. Being Indigenous is a unique political and social position in relation to DOI: 10.4324/9781003280422-5

Degeneracy and Replacement 69 the colonial state and one’s homelands – it is a position of precedence and resistance (Monaghan, 2021). This is a cornerstone of Indigenous sovereignty - Aboriginal and Torres Strait Islander people, governance, and knowledge are ontologically prior to the formation of Australia, and we intend to outlast it (Coe, 2022). Such a position inherently threatens the permanency of white settlers on this continent and the validity of the settler colonial state. For these reasons, replacement is both the driving anxiety and goal of white settlers in so-called Australia. As Patrick Wolfe observed, ‘settler colonialism destroys to replace’ (2006). While Wolfe, who was a white settler, is the most widely cited settler colonial studies scholar, he openly acknowledged that his thinking on colonialism and genocide came from Native and Indigenous Studies scholarship (Kauanui and Wolfe, 2012). This is one reason Indigenous Studies scholars prefer settler colonial to postcolonial analysis which has thus far been preferred in disability studies (Meekosha, 2011). Furthermore, we understand eugenics as a structural component of a genocidal settler colonial state. The biocultural absorption and regulation of Indigenous populations and the ideological and physical elimination of Indigenous people on our own lands are towards an ultimate project of replacement (Kauanui, 2016). As is the maintenance and dominance of white settler populations. Replacement is central to settler colonialism in so-called Australia on both accounts. Aboriginal and Torres Strait Islander people resist white settlers and violent settler structures that seek to permanently replace us on our own lands, and white settlers fret about being replaced as the dominant population. To initially impose and then maintain white supremacy and settler dominance on this continent, white settlers have intervened at every level of Indigenous life. Colonial policy and institutions have regulated where and how Aboriginal and Torres Strait Islander people live, how we couple or marry, whether we can have children or raise them, and how we understand ourselves, our bodies, and our relationships. This is certainly not past tense for remote communities and Aboriginal people in the Northern Territory who still live with militant colonial interventions. In an increasingly neoliberal era, Aboriginal and Torres Strait Islander people, even those living in urban and regional locations, are still closely policed and regulated by a colonial state and relentlessly subjected to child removal, carceral, and income management systems (Turnbull-Roberts, 2023). Settlers can and do use state force and power to repress and control Indigenous populations. They also use new social and discursive means to construct, intimidate, harass, and criminalise us and to maintain, rally, and regulate their own populations. White settlers have never been so empowered to circulate their anxieties as they have become with the internet. White settler anxieties and settler narratives are seeing a resurgence. Increased social and economic instabilities generated by preceding neoliberal policy and worsened by the social and economic consequences of government

70

Madi Day

interventions during the COVID-19 pandemic have caused large-scale distrust for settlers in their own institutions. Never before have white settlers been so profoundly and publicly anxious about the maintenance of their populations. As I will show, degeneracy and replacement of white populations are old narratives at the heart of these anxieties. Utilising Indigenous and anti-colonial theory for discourse analysis below, I demonstrate how white settler anxieties are distinctly concerned with being/becoming degenerate/replaced, and, both historically and currently, white settlers act out these anxieties violently on Indigenous and non-white people. Degeneracy is used in this chapter to describe how so-called Australia preserves eugenics through popularised fear and disgust of any person who is not white cisgender heterosexual and ablebodied. Below, I discuss how white settlers have used eugenics in Australia and popularised anxieties about white race deterioration. I analyse the production of these concepts using theoretical frameworks from Indigenous disability and queer studies. Then, I discuss the revitalisation of White Replacement discourses and how this incites violence towards Indigenous people in service of settler colonial replacement. Ultimately, I conclude that white settlers are not only anxious about being replaced but are systematically violent to maintain population hygiene and dominance in so-called Australia. Methodology I’m a trans Murri with a disability – a triple threat, if you like. I feel compelled to mention this not to assert my authority to speak but because this influences how I see and understand as generating categories of power. As Koori scholar John Gilroy notes (2009), Aboriginal communities tend not to conceptualise ourselves and communities in terms of disability. We are concerned foremost with these issues as impositions by settlers and their state. This rings true on trans and queer issues also. Wiradjuri trans scholar Sandy O’Sullivan argues that terms like queer and transgender become necessary in relation to colonial productions of gender and sexuality, and the burden of proof lies with colonisers to prove that binary gender and heterosexuality are in fact universal (2022a). Race is well known to have distinctly European roots. Indeed, terms like Aboriginal and Torres Strait Islander are produced alongside colonial history. This is what I mean when I say that issues of power like race, gender, disability, and sexuality are not only issues of epistemology but are underpinned by a question of ontology. As I will show, the production and regulation of these categories contribute to a settler colonial project of replacement which naturalises and sustains white populations. It becomes important then to understand coloniality as the origin point for these categories of power. In thinking this through, I deploy an anti-colonial analysis comprised of Indigenous queer theory from O’Sullivan (2022b) as well as Gilroy’s body of work on coloniality and disability. Collectively, these works enable an interdisciplinary analysis of disability, sexuality, gender, and race in so-called

Degeneracy and Replacement 71 Australia as connected through coloniality. Additionally, Gilroy’s thinking shows the disconnect between settler thinking on disability and how Aboriginal communities understand disability in the context of our broader social and historical experiences as well as our family/community roles (2008). He highlights how settler government institutions and policies have disabled and disenfranchised Aboriginal people and how current disability policies and service delivery in Australia reproduce limiting discourse about Aboriginal people which generates distrust (Gilroy et al., 2016). Although he has shown the many limitations of colonial infrastructure, policy, and services targeting Aboriginal people with disabilities and, in the process, has successfully advocated for improvements and reforms, Gilroy’s body of work also offers a clear outline of how coloniality produces disability as a category and imposes it on Aboriginal communities. It is important not to mistake Gilroy’s claim that Aboriginal communities do not conceptualise disability in the same way as settlers to mean solely that Aboriginal people with disabilities are and need to be treated as culturally distinct. Gilroy (2009) has always said that he is interested in the generative potential of interactions between Indigenous and non-Indigenous thinking. Rather than emphasising distinction, he demonstrates that widespread conceptualisation of disability in Australia is generated specifically by European colonialism and received or rejected by Aboriginal people on these terms. Gilroy’s work is under-cited in global disability studies, perhaps because much of it is collaborative with multiple authors (and he is not always the first) and also targets contemporary Australian policy and services while sociological disciplines privilege sole or dual-authored publications with globalised rather than localised theories. In my experience as an Indigenous Studies student and now academic, this is a common barrier for Aboriginal academics who are more concerned with the potential benefits of research for their communities and who are more dedicated to mentoring, relationships, and justice initiatives than they are to international scholarly acclaim. Here, I use the thinking that carries across Gilroy’s publications on coloniality and disability in combination with my own training in Indigenous queer studies for an interdisciplinary analysis of racial and reproductive anxieties and how they are expressed in settler colonial Australia. It is well established that colonial violence, imperialism, and racism cause disability at higher rates among Indigenous peoples in the Global South (Soldatic and Gilroy, 2018). Among Southern settler scholars, it is widely accepted that both colonialism and racism are disabling and that there are parallels between colonial impositions on Aboriginal people and people with disabilities in so-called Australia (Hollingsworth, 2012). Although regulation of Indigenous women and girls’ sexualities has been included in these analyses, there is opportunity for further analysis of the relationship between eugenics and reproduction regulations as productive of coloniality and, ultimately, strategies of settler colonial replacement and white population maintenance. As I will show, white replacement and degeneracy anxieties underpin many eugenic and regulatory

72

Madi Day

practices in so-called Australia. In doing so, I think through categories of power as indisputably and irrevocably connected through whiteness and coloniality. Eugenics and degeneracy Control and containment of non-white populations is foundational to the majority white nation-state called Australia, and disability, sexuality, and Indigeneity have been key points of intervention. As settler scholar Karen Soldatic (2015) notes, from federation in 1901, Australian policies including the Immigration Restriction Act (part of a suite of acts known as the White Australia Policy) have limited not only non-white immigration to Australia but also immigrants with mental disabilities, infections and diseases, and those convicted of prostitution. Alongside limited immigration, Carlson (2016) has shown how the settler state systematically diminishes Aboriginality. Historically, colonial forces measured Aboriginality through blood quantum and removed children who had more European ancestry to be enculturated into white populations under state-based Aboriginal/ Aborigines Protection Acts beginning in 1869. People with less European ancestry were segregated to missions and reserves where many people were also medically sterilised (Tatz, 2016). Settler administrators were highly preoccupied with the sexuality of Aboriginal women and children. For instance, the Chief Medical Officer and Chief Protector of Aborigines in the Northern Territory between 1927 and 1939, Dr. Cecil Cook, ultimately unsuccessfully, advocated for sterilisation of children who were ‘half-castes’ and ‘mentally defective’ (Cook as cited in Hollingsworth, 2012). Aboriginal people living on missions and reserves also had to apply for church or government permission to marry, and assimilation politics in the 1920s and 1930s initially made it easier for Aboriginal women to marry white men (Soldatic, 2015). Experimental contraceptive treatments including Depo Provera were forced on Aboriginal children who were institutionalised as late as the 1970s (Farnsworth, 2015). Carlson also highlights that Aboriginal people were managed as legal wards of states until 1967, and many were coerced away from their communities and families and offered social and economic privileges in return for a formal agreement to cease contact and no longer live as an Aboriginal person (this is known to Aboriginal communities as an exemption certification or colloquially as a ‘dog tag’). Although Aboriginal Protection Acts were repealed in 1969, there are many flow-on effects in policy and Aboriginal peoples’ lives today. Carlson’s scholarship and the work of Southern settlers show how negative eugenics has been imposed on both Indigenous and disabled populations. The other side to this is positive eugenics which has been applied to white populations and is ultimately managed to prevent degeneracy through race or disability. Maintenance of white populations is closely linked to reproductive practices. The anxiety at the heart of medical and

Degeneracy and Replacement 73 institutional regulation of relationships, lives, and sexuality in Australia is that white populations will degenerate and be replaced. White settlers are not only afraid to be replaced by non-white populations, they fear that their own bodies and bloodlines may be diminished or corrupted. For this reason, settlers are not only preoccupied with the sexuality and reproductive capacity of Indigenous people and people with disabilities but also with the control and containment of white queer and transgender and sex worker populations. Notions of pathological sexuality, and indeed normative sexuality, are prolific European exports. Gender and reproduction are irrevocably tied to European nation-states (and settler colonial nationstates by extension) which are ordered and fortified through the nuclear family unit (Caine and Sluga, 2000). Historically, European rules of gender and reproduction were administered by Christianity as was the nation-state overall. However, during the late 19th-century turn towards modernity, the institutional and scientific management of European populations and their colonies took hold. Eugenicists including French diplomat Arthur de Gobineau and German physician Alfred Ploetz popularised white population hygiene in the name of nation-state building during this time. A central tenet of these theories was that white populations could be degenerated through breeding with other races but also through disease, disability, and sexual pathologies. Ploetz’s ideologies lost favour after their implementation in Nazi Germany but not before they informed medical and institutional violence in European colonies (Turda and Balogun, 2023). This trend towards scientific and medical management of reproductive behaviours also informed a burgeoning field of European sexology which introduced a regime of practices to enforce procreative opposite-sex desire and sexual hygiene. Globally, scholars of European eugenics have disproven the popular belief that state-based and/or endorsed population hygiene initiatives ended after Nazi Germany. Many have pointed to the prevalence of pronatal policies like the ‘baby bonus’ – a financial incentive for childbearing available in so-called Australia between 2004 and 2014 (Paul et al., 2008). It is important to note, as Soldatic (2015) points out, that Australian baby bonus payments varied and were in some cases denied to people who gave birth to disabled children. Alongside pro-natal policies, sexology propagated by the likes of Viennan psychiatrist Richard von Krafft-Ebing and German psychologist Sigmund Freud has also carried institutional and medical regulation of reproduction and sexuality well into the 20th and 21st centuries. Krafft-Ebing and Freud are responsible for pathologising ‘deviant’ and ‘degenerate’ sexualities and for interventions including confession, suppression, and conversion practices (Katz, 2007) which are still legal on a state-by-state basis in Australia to this day. Sex between men was made illegal in Australia under British law from the start of colonisation in 1788 and decriminalised state by state, ending with Tasmania in 1997. Control and containment of homosexual

74

Madi Day

men was highly topical in European countries and colonies at the turn of the 19th century and into the 20th century when Oscar Wilde’s trial for ‘indecency’ regularly made headlines (Sydney Morning Herald, 2020). Public scandals involving homosexual men were revitalised during World War I and II when homosexuality in the armed forces was seen as a disease that threatened Britain and its settler nation-states and their national security (Smaal, 2013). In 1955, New South Wales introduced new and harsher laws criminalising soliciting and buggery. In 1957, the former asylum Cooma Correctional Centre was repurposed as a site specifically for gay men where psychologists and psychiatrists frequently conducted experimental conversion therapies. Attorney General at the time, Reg Downing (namesake of the Downing Centre in Sydney), was instrumental in establishing a committee that cited the jail as a ‘specialised institution’ where, Downing argued, the government could conduct ‘scientific evaluation of the problem and possible solution’ (as cited in Nunn, 2022). Although lesbianism was not technically illegal in Australia, many who were diagnosed with neurotic or degenerate sexualities were subject to forced medical procedures including aversion therapy and amygdalotomies into the 1970s and also incarcerated in hospitals and asylums with people with mental disabilities under the same rationale of scientific intervention (Jennings, 2015). Institutional and medical regulation of sexuality in European countries and colonies extended beyond homosexuality and often targeted people who were labelled as sexually promiscuous or who were sex workers. European nations began targeting sex workers using medical examination for venereal diseases in the early 19th century and incarcerating women in hospital wards if they were believed to be infected (Caine and Sluga, 2000). These medical policing practices extended to so-called Australia where Aboriginal people including children were removed from their homes and incarcerated on islands off the coast of Western Australia (WA) and Queensland for suspicion of having venereal disease. I say suspicion because it is well documented that colonial authorities conducted little clinical testing for venereal diseases in Aboriginal people, and instead, administrators and authorities relied on anecdotal and observational evidence from police and medical professionals (Parsons, 2008). These sites are known as lock hospitals. While hospitalisation was forced on white sex workers in Queensland and WA, they were ultimately able to receive free treatment for their conditions on the mainland and then leave. Aboriginal people, on the other hand, were escorted to islands in chains and were, in some cases, charged by the Chief Protector of Aboriginals Office for their ‘treatment’. This included regular experimental treatments for venereal diseases which included injection of toxic substances like bismuth and arsenic which were often fatal. Aboriginal communities in Carnavan remember stories of loved ones who were forcibly moved to these islands and never returned (Michelmore, 2018). The WA and Queensland governments justified these

Degeneracy and Replacement 75 atrocities citing Aboriginal peoples’ sexual promiscuity. On the topic, Chief Protector of Aborigines for Queensland, John Bleakley, stated that ‘one has to accept that, owing to their nature and oft their condition, these people are over-sexed’ (cited in Parsons, 2008). As Wiradjuri scholar Corrinne Sullivan has shown, sexual hygiene and promiscuity were used across the continent as justifications to incarcerate and institutionalise Aboriginal women and children well into the 20th century (Sullivan, 2017). White replacement anxieties Anxieties about white replacement are as old as so-called Australia itself. In 1901, the White Australia Policy (the Immigration Restriction Act, Pacific Island Labourers Act, and the Post and Telegraph Act) formed the first suite of legislation passed in federal parliament. There was a widespread campaign for social and political support for the policy including merchandise like The White Australia Protection badges – round brass badges that included the phrases ‘Australia for Australians’ and ‘Population, Production, Progress’ encircling a map of the continent (National Museum of Australia, 2023). As Australia forged its national identity separate from Britain, there was considerable focus on ideas about race and self-government from other British colonies, including the writings of Theodore Roosevelt, the soon-to-be president of the United States of America (Lake and Pratt, 2008). In 1905, Roosevelt raised white population maintenance in a speech on American Motherhood where he declared that the nation would not prevail: unless the average woman is a good wife, a good mother, able and willing to perform the first and greatest duty of womanhood, able and willing to bear, and to bring up as they should be brought up, healthy children, sound in body, mind, and character, and numerous enough so that the race shall increase and not decrease (Roosevelt, 2012). To avoid these responsibilities, he argued, was ‘race suicide’. Protecting white populations was a matter of superiority for the first prime minister of Australia, Edmund Barton, who was the leader of the Protectionist Party and who is famously quoted saying ‘There is no racial equality. There is that basic inequality. These races are, in comparison with white races – I think no-one wants convincing of this fact – unequal and inferior’ (Jones, 2017). Even though support for and maintenance of the White Australia policy carried forward with succeeding parties and leadership, in 1925, anxieties around white replacement were still so high that the Prime Minister’s Department had to publish foreign migration rates to reassure the Australian public that they were still majority British (Publicity Branch of the Prime Minister’s Department, 1925).

76

Madi Day

Due to proximity and, perhaps also, existing relations with Indigenous communities that predate colonisation, Asian migration has been a core settler anxiety in so-called Australia, spanning from pre-federation across the White Australia Policy era and well into the 20th century. In 1945, the Federal Department for Immigration introduced ‘populate or perish’, an immigration campaign to attract immigrants from Europe after World War II. At the same time, the government began a coordinated effort to deport Chinese men who had come to Australia via the military or work in construction during the war (Tao, 2014). Although immigration restrictions eased in the lead-up, the White Australia Policy was in effect until 1966. Similarly, although Australia signed the United Nations Declaration of Human Rights in 1948 prompted by the atrocities of Nazi Germany during WWII, unofficial segregation inspired by Apartheid South Africa which separated Indigenous and non-Indigenous people in public places like theatres and schools was introduced in the same year and continued until the 1960s. As eugenic and openly xenophobic ideology lost favour after the war, the language of racial hygiene and white population management began to change. One example of this is the Racial Hygiene Association (RHA) of New South Wales. Founded by white feminist Ruby Rich and heavily influenced by the work of Jean-Jacques Rousseau and Sigmund Freud, the association was primarily concerned with population degeneracy, particularly mental and physical disability, through sexual depravity and migration as it related to venereal diseases. The RHA mission was to enhance the ‘quality not the quantity’ of the Australian population (Rees, 2012). Racial and sexual health were the core focus of the organisation, and it is accredited with distributing and promoting sex education and birth control across the nation. The organisation received state government funding in 1927 and became Family Planning Australia in 1960. While the civil rights movements and increased capacity for multicultural immigration transformed Australian society in the 1970s and 1980s, white replacement anxieties remained an underlying value of Australian nationhood. Aboriginal and Torres Strait Islander organisations and activists worked to repeal Protectionist and assimilationist policies at this time and called for recognition and justice for ongoing atrocities including dispossession, Deaths in Custody (murders by police brutality and negligence in prisons), and child and wage theft. In the late 80s and early 90s, this culminated in increased political recognition and eventually a national inquiry into the harm inflicted on members of the Stolen Generations, as well as increased momentum for Aboriginal and Torres Strait Islander land rights movements including historic wins like the Mabo Decision and Wik Peoples vs Queensland. The backlash for these gains was monumental. In response to mounting treaty demands from Aboriginal and Torres Strait Islander people in 1988, soon-to-be prime minister John Howard launched the ‘One Australia’ policy which argued against multiculturalism in favour

Degeneracy and Replacement 77 of cultural assimilation into the values of majority white Australia and openly foreclosed on treaty: I abhor the notion of an Aboriginal treaty because it is repugnant to the ideals of One Australia (Howard in Markus, 2001). Assimilationist ideals and white anxieties resurfaced with a vengeance in the 1990s, and although fringe politicians like Pauline Hansen led the charge, they were endorsed politically by the Howard government. While Hansen’s calls for the end of multiculturalism and claims that Australia was being ‘swamped by Asians’ (Martino, 2016) incited violence in the streets, Howard enacted hostility towards non-white communities by rolling back multicultural programmes, limiting immigration, and defunding and diminishing Aboriginal and Torres Strait Islander political infrastructure, policy, and programmes. This was the beginning of a movement with many names and catchphrases. Some refer to it as ‘return of the Aussie battler’, ‘Aussie Pride’, or highlight the increased use of the term ‘Un-Australian’ (Perera and Pugliese, 1997) towards racialized communities who ‘do not assimilate’ (Martino, 2016) into White Australia. Others have identified this period as the resurgence of the Australian far right (Peucker and Smith, 2020). Imported tensions post 9/11 heightened white anxieties further and saw escalating hostility towards Muslim and Arab communities which culminated in the Cronulla Riots in 2005 where thousands of white Australians engaged in a race riot to ‘reclaim the beach from outsiders’ (National Museum of Australia, 2023). Anti-Muslim and White Population Replacement Conspiracy theories including Ye’or’s Eurabia and Camus’s Great Replacement Conspiracy1 theory exploded out of Europe at this time and were hungrily consumed by white populations in British colonies (Hernandez Aguilar, 2023). As Koori scholar Peita Richards (2020) has shown, the rise of Web 2.0 – a predominantly user-generated internet including social media and message boards which enable both connection and anonymity, gave ‘a second life’ to white supremacist messaging. Carlson and white settler colleague Frazer (2021) also note how white supremacist organisations including the Klu Klux Klan relished new platforms where, after infiltrations and arrests in the 1980s, they could regroup and attract new followers to a leaderless movement. These developments led to flourishing online communities where theories like the Great Replacement could circulate globally and take on many violent lives of their own. While many young white men in Australia may never read Camus’s book, they are likely to be exposed to the fundamental messaging that people of colour are conspiring to replace white populations globally and that white women, queer, and transgender people are race traitors contributing to depopulation by avoiding reproduction with/as white men via platforms including 4Chan,

78

Madi Day

Reddit, and Twitter in form of short posts and memes (Hernandez Aguilar, 2023). The consequences of mounting white replacement anxieties are lethal. In so-called Australia, white anxieties culminated in localised vigilante groups forming on Facebook in towns like Kalgoorlie where in 2015, a 56-year-old white man ran down and killed Elijah Doherty, a 14-year-old Aboriginal boy riding a bike, whom the killer incorrectly assumed to be stolen. The Facebook groups were allowed to remain even after Elijah was killed and other white members posted in the group celebrating the killer’s actions (Carlson and Frazer, 2021). In 2019, white Australian Brenton Tarrant wrote and published a manifesto entitled ‘The Great Replacement’ on Twitter, Steam, Facebook, 4chan, and 8chan before he livestreamed himself shooting 51 people attending a mosque in Christ Church, New Zealand, via Youtube (Ali, 2021). Prior to the massacre, Tarrant also regularly posted in incel forums on 4chan where men self-identified as ‘involuntary celibates’ express discontent towards, usually white cisgender, women for withholding sex and associate this with the demise of white populations (Hernandez Aguilar, 2023). Like Aboriginal scholars, Muslim settler Kawsar Ali (2021) draws a comparison between Tarrant’s white replacement anxieties and the way in which settlers attempt to eliminate and replace Indigenous peoples on our own lands. In this way, white replacement anxieties connect directly to settler colonial narratives, and in particular, narratives of reverse colonisation and white genocide. As white settler colonial scholar Lorenzo Veracini articulates, settler narratives are two-fold. Firstly, they eliminate or disappear Indigenous people, and secondly, they indigenise settlers (Veracini, 2010). Protecting and indigenising whiteness is also a core narrative carrying across both so-called Australian national identity as well as Camus’ original text concerning Europe. As the Counter Extremism Project specifies: The Great Replacement Theory is an ethno-nationalist theory warning that an indigenous European—e.g., white—population is being replaced by non-European immigrants … white nationalists believe they are ensuring the survival of their own race through violence against other ethnicities (Counter Extremism, 2023). White replacement anxieties are centrally concerned with reproduction and elimination as a form of defence against degeneracy. Although, as I have outlined, white anxieties of replacement and degeneracy are as old as Australia itself, the ongoing and perhaps resurging relevance of these ideas can be felt across the continent at present. Figure 4.1 is a sample of flyers delivered to homes in Brisbane as shared by Dan Rennie and circulated by other Aboriginal users of Instagram in June 2023. The same flyers circulated in Adelaide in 2022. Similar recruitment flyers (Figure 4.2)

Degeneracy and Replacement 79 were distributed around Bondi Beach in Sydney in 2022. Each of these flyers emphasises white physical fitness and echoes the 14-word directive issued from prison by white American and Klu Klux Klan member David Lane before his death in 2007: We must secure the existence of our people and a future for white children (Lane, in Richards, 2020). A third flyer (Figure 4.3) was shared by the Aboriginal activist account @dreamtime_aroha on Instagram and circulated on the Sunshine Coast in Queensland, sharing addresses and images of local teenage Aboriginal girls which can be read as intentional targeting and endangerment. All three of these flyers have been linked to the National Socialist Network and Figure 4.3 directs readers straight to the group’s Telegram – an encrypted messaging platform that has been instrumental in the rise of decentralised anti-vaccine and right-wing organising since the COVID-19 pandemic (Gais and Squire, 2021). The contents of these flyers indicate a continuation of white settler narratives simultaneously invested in reproduction of white racial hygiene as well as racial violence towards Indigenous and non-white peoples. Concluding thoughts Settler colonial narratives are both utopian and dystopian – depending on where you’re standing. As I have shown, the utopian White Australia envisioned by settlers at federation is comprised of physically fit (read: non-disabled or diseased) white (cisgender) men and women who are heterosexually attracted and produce (non-disabled) white children who may secure settler futures and replace Indigenous people on our own lands (see Figure 4.2). For white settlers, the dystopian Australia present in white replacement anxieties is one not necessarily where Indigenous peoples have our lands returned. It is one where non-white peoples from other formerly or currently colonised nations over-take white populations in the West. Thus far, white settler discourses suggest that Muslim Middle Eastern and Asian populations are who they fear most. However, as I was writing this chapter, I also observed an extreme rise in anti-transgender rhetoric, particularly in the Australian right-wing media and in anti-vax and altright communities online which beckons further inquiry. White anxieties transform and develop rapidly but the same concerns with replacement and degeneracy remain underlying. Indeed, depopulation conspiracies circulated as anti-vax misinformation seem to be the link between both the resurgence of decontextualised white supremacist propaganda online and anti-trans rhetoric. Significantly, the anxiety underpinning anti-vax activism is the disabling of children. Thus, we can observe consistent thinking among white settlers across decades of colonisation traceable in all instances to Europe. This is why Indigenous queer and disability

80

Madi Day

scholars emphasise coloniality as the underlying cause of categories of power in so-called Australia, including disability, sexuality, gender, race, and even Indigeneity. Tracking institutional and systemic violence in this way shows that they are neither timeless nor universal. It has a beginning, and in our vision for this continent, an end. Note 1 Please note that I have refrained from referencing these texts intentionally so I don’t increase their citations which can lead to an impression of validity as well as wider circulation.

References Ali, K. (2021) ‘“Unsettling” the Christchurch Massacre foregrounding settler colonialism in studies of Islamophobia’, Journal of the Contemporary Study of Islam 2(2): 87–111. Byrd, J. (2011) Transit of empire: Indigenous critiques of colonialism. University of Minnesota Press. Caine, B., and Sluga, G. (2000) ‘Sex and race, nations and empires’, in B. Caine & G. Sluga (eds.) Gendering European history. 4th edn. Continuum, pp. 1780–1920. Carlson, B. (2016) The politics of identity: Who counts as Aboriginal today?. Aboriginal Studies Press. Carlson B., and Frazer, R. (2021) ‘Hate’ in indigenous digital life: The practice and politics of being indigenous on social media. Palgrave Macmillan. Coe, L-J. (2022) ‘From the frontlines of Black resistance: reshaping meaning and purpose of Australia Day’. MPhil thesis. Macquarie University. Crenshaw, K. (2017) On intersectionality: Essential writings. The New Press. ‘Cronulla Race Riots’, National Museum Australia 2023. Available at: https://www. nma.gov.au/defining-moments/resources/cronulla-race-riots Farnsworth, S. (2015) ‘Child abuse royal commission: Experimental contraceptive used on Victorian wards of the state, inquiry hears’, ABC News, 24 April. Available at: https://www.abc.net.au/news/2015-08-24/inquiry-hears-of-contraceptive-for-wardsof-state-and-incest/6720598 Gais, H., and Squire, M. (2021) ‘How an encrypted messaging platform is changing extremist movements’, Southern Poverty Law Center, 16 February. Available at: https://www.splcenter.org/news/2021/02/16/how-encrypted-messaging-platformchanging-extremist-movements Gilroy, J. (2008) ‘Service delivery for Aboriginal people with a disability and their families’, Disparity: Policy, Practice and Argument 5: 24–27. Gilroy, J. (2009) ‘The theory of the cultural interface and Indigenous people with disabilities in New South Wales’, Balayi: Culture, Law and Colonialism 10: 44–58. Gilroy, J., Donelly, M., Colmar, S., and Parmenter, T. (2016) ‘Twelve factors that can influence the participation of Aboriginal people in disability services’, Australian Indigenous Health Bulletin 16(1). ‘Great Replacement Theory’ (2023) Counter Extremism Project. Available at: https:// www.counterextremism.com/content/great-replacement-theory Grech, S., and Soldatic, K. (2015) ‘Disability and colonialism: (Dis)encounters and anxious intersectionalities’, Social Identities 21(1): 1–5. Hernandez Aguilar, L. M. (2023) ‘Memeing a conspiracy theory: On the biopolitical compression of the great replacement conspiracy theories’, Ethnography 0(0), 1–22.

Degeneracy and Replacement 81 Hill Collins, P. (2015) ‘Intersectionality’s definitional dilemmas’, Annual Review of Sociology 41(1), 1–20. Hollingsworth, D. (2012) ‘Decolonising Indigenous disability in Australia’, Disability & Society 28(5), 601–615. Jennings, R. (2015) Unnamed desires: A Sydney lesbian history. Monash University Publishing. Jones, B. T. (2017) ‘Australia politics explained: White Australia Policy’, The Conversation, 9 April. Available at: https://theconversation.com/australianpolitics-explainer-the-white-australia-policy-74084 accessed May 15 2023 Katz, J. N. (2007) The invention of heterosexuality. University of Chicago Press. Kauanui, J. K., and Wolfe, P. (2012) ‘Settler colonialism then and now. A conversation between’, Politica & Societa 2: 235–258. Kauanui, J. K. (2016) ‘A structure, not an event: Settler colonialism and enduring indigeneity’, Lateral: Journal of the Cultural Studies Association 5(1). Lake, M., and Pratt, V. (2008) ‘“Blood Brothers”. Racial identification and the right to rule: The Australian response to the Spanish
American war’, Australian Journal of Politics & History 54: 16–27. London Correspondents (2020) ‘From the Archives, 1895: Oscar Wilde arrested in London’, Sydney Morning Herald, April 6. Available at: https://www.smh.com.au/ world/europe/from-the-archives-1895-oscar-wilde-arrested-in-london-20200331p54fll.html Markus, A. (2001) Race: John Howard and the remaking of Australia. Allen & Unwin. Martino, M. (2016) ‘Pauline Hanson’s maiden speech: Has Australia been “swamped by Asians”?’, ABC News, 14 September. Available at: https://www.abc.net.au/ news/2016-09-14/pauline-hanson-maiden-speech-asian-immigration/7645578 McCann, H., and Monaghan, W. (2019) Queer theory now: From foundations to futures. 2nd edn. Bloomsbury Publishing. Meekosha, H. (2011) ‘Decolonising disability: Thinking and acting globally’, Disability & Society 26: 667. Michelmore, K. (2018) ‘The ugly past of Australia’s ’lock hospitals’ on Bernier and Dorre Islands slowly revealed’, ABC News, 19 December. Available at: https://www. abc.net.au/news/2018-12-19/indigenous-lock-hospitals-onbernier-and-dorre-islands/ 10634122 Monaghan, O. (2021) ‘Milirrpum v Nabalco Pty Ltd (1971) 17 FLR 141’, in Watson, N. & Douglas, H. (eds.) Indigenous legal judgments: Bringing indigenous voices into judicial decision making. Routledge. Nunn, G. (2022) ‘Cooma jail: Prison that was once ’world’s only jail for gay men’’, BBC News, 24 April. Available at: https://www.bbc.com/news/world-australia61006503 O’Sullivan, S. (2022a) ‘No Cession: Indigenous trans people have always been, are, and will be. Proof is not required’. Pipewrench. Available at: https:// pipewrenchmag.com/binary-gender-is-a-colonial-construct/ O’Sullivan, S. (2022b) ‘The colonial project of gender (and everything else)’, Genealogy 5(3): 67. Parsons, M. (2008) ‘Fantome Island Lock Hospital and Aboriginal venereal disease sufferers 1928-45’, Health and History 10(1): 41–62. Paul, D. B. et al. (2008) ‘Introduction: Eugenics as a transnational subject: British Dominions’, in D. B. Paul, J. Stenhouse & H. G. Spencer (eds.) Eugenics at the edges of the empire: New Zealand, Australia, Canada and South Africa. Springer. Perera, S., and Pugliese, J. (1997) ‘’Racial suicide’: The re-licensing of racism in Australia’, Race & Class 39(2): 1–19. Peucker, M., and Smith, D. (2020) The far-right in contemporary Australia. Palgrave Macmillan.

82

Madi Day

Publicity Branch of the Prime Minister’s Department (1925) ‘Foreign migration to Australia: Interesting facts and figures’. Available at: https://trove.nla.gov.au/ newspaper/article/153840401?searchTerm=98%20white%20British%20population%20department%20of%20information&searchLimits= Rees, A. (2012) ‘“The quality and not only the quantity of Australia’s people” Ruby Rich and the Racial Hygiene Association of NSW’, Australian Feminist Studies 27(71): 71–92. Richards, P. L. (2020) ‘Big data and the resurgence of the far right within the United States of America’, in S. D. Ashe, J. Busher, G. Macklin & A. Winter (eds.) Researching the far right: Theory, method & practice. Routledge. Roosevelt, T. (2012) On American motherhood. Balster Publishing. Smaal, Y. (2013) ‘“It is one of those things that nobody can explain”: Medicine, homosexuality, and the Australian criminal courts during World War II’, The Journal of the History of Sexuality 22(3): 501–524. Soldatic, K., and Gilroy, J. (2018) ‘Intersecting indigeneity, colonialisation and disability’, Disability and the Global South 5(2): 1337–1343. Soldatic, K. (2015) ‘Postcolonial reproductions: Disability, indigeneity and the formation of the white settler masculine state of Australia’, in K. Soldatic & S. Grech (eds.) Disability and colonialism. Routledge. Sullivan, C. (2017) ‘Aboriginal inmate experiences of Parramatta Girls Home’, Australian Aboriginal Studies (2): 84–97. Tao, K. (2014) ‘Populate or Perish: From ‘White Australia’ to Multicultural Nation’, Signals (107): 30–35. Tatz, C. (2016) ‘Australia: The ‘good’ genocide perpetrator?’, Health and History 18(2): 85–98. Turda, M., and Balogun, B. (2023) ‘Colonialism, eugenics and ‘race’ in Central and Eastern Europe’, Global Social Challenges Journal 2(2), 168–178. Turnbull-Roberts, V. (2023) ‘I was 10 years old when I was taken from my home. The Stolen Generations never ended’. The Guardian, 12 Feb. Available at: https:// www.theguardian.com/commentisfree/2023/feb/12/i-was-10-years-old-when-iwas-taken-from-my-home-the-stolen-generations-never-ended Veracini, L. (2010) Settler colonialism: A theoretical overview. Palgrave Macmillan. ‘White Australia Policy’ (2023) National Museum of Australia. Available at: https:// www.nma.gov.au/defining-moments/resources/white-australia-policy Wolfe, P. (2006) ‘Settler colonialism and the elimination of the native’, Journal of Genocide Research 8(4): 387–409.

Degeneracy and Replacement 83 Appendix

Figure 4.1 Flyer distributed in Brisbane, QLD.

84

Madi Day

Figure 4.2 Flyer distributed in Sydney, NSW, & Adelaide, SA.

Degeneracy and Replacement 85

Figure 4.3 Flyer distributed on Sunshine Coast, QLD.

5

Disabled Romani people in Germany Learning from the notion of indigeneity in disability studies outside of settler-colonial states Yvonne Wechuli and Robel Afeworki Abay

Introduction Learning from Indigenous Studies can decentre knowledge and recognise cultural survival as resistance (Clifford, 2013). In Germany, Romani people are frequently perceived as illegitimate immigrants (ZfA, 2014), a stereotype that manifests in massive structural discrimination of Romani students who are often disproportionately transferred to segregated special education. However, such injustice is only possible against the background of misconceptions that classic European nation-states, like Germany, were originally populated by a culturally, ethnically, and linguistically homogeneous population, which has never been empirically true for the past (Lindemann, 2002) and present (BMI, 2020). The notion of indigeneity can sensitise us for endemic diversity and difference (Rivas Velarde, 2018) and point out inequalities as well as a lack of care by health and other sectors (Gilroy and Donelly, 2016; Soldatic, 2015) – hoping that such reflections can counter carelessness as well as fetishisation (Voronka, 2019). This chapter therefore draws structural parallels of intersectional discrimination between indigenous groups in settler-colonial states and ethnic minority groups of Romani people in Germany. In doing so, we1 are engaging the notion of indigeneity outside of settler-colonial states – exemplarily focusing on Romani people in Germany. Exploring the complex nexus of indigeneity and disability, we are trying to think through some of the compounding forms of oppression and exclusion that need to be addressed intersectionally in Disability Studies. Indigenous thoughts and knowledge systems of making sense of dispossession, racism, and violence can provide a deeper understanding of Romani experiences in Europe because of the particularity of the racist structural violence these minority groups experience. Moreover, learning from the notion of indigeneity can decentre knowledge and recognise cultural survival as resistance. European colonialism has not only shaped formerly colonised states but also the emerging nation-states of colonisers’ origin (Robel, 2015). For this reason, we further employ post- and

DOI: 10.4324/9781003280422-6

Romani people in Germany: Learning from notion of indigeneity

87

decolonial thought like Necropolitics (Mbembe, 2003), epistemic violence (Spivak, 1988), and postcolonial Dismembrance (Ha, 2005; Hutson, 2011). Engaging with indigeneity can mean two things for Disability Studies: acknowledging interlocking dimensions of discrimination due to disability or analysing (neo-colonial) causes for a higher disability prevalence amongst ethnic minority groups (Weaver, 2015). Despite overlaps with postcolonial perspectives in Disability Studies (for an overview, see Grech, 2015; Meekosha, 2011), Soldatic (2015) reminds us not to subsume indigenous people’s experience under the rubric of racism as processes of dispossession are not accounted for. According to Lavonna Lovern (2017), engaging with indigenous thought can advance Western discourses on disability: despite vast cultural variations on body/mind constructs, many Indigenous cultures worldwide value difference and equality and do not conceptualise cure as a prerequisite for wellness. Thus, indigenous perspectives can inform Disability Studies on how to think about disability differently, as pointed out by a postcolonial critique that tends to stay silent on alternative visions (Afeworki Abay, Schülle and Wechuli, 2021). We acknowledge the danger of cultural appropriation and co-opting indigenous knowledges here, especially when “claiming easy/comfortable coalition or commonality” (Jaffee and John, 2018, p. 1408), alongside silencing Romani experiences and cultural practices of the body/mind in their own social relationships. Nonetheless, we want to share James Clifford’s enthusiasm about indigeneity in this chapter – understanding survival as resistance as well as the 21st century as a time to push for social change towards culturally and epistemologically diverse postmodern societies. Tribal, aboriginal, or First Nations societies had long been destined to disappear in the progressive violence of Western civilisation and economic development. Most well-informed people assumed that genocide (tragic) and acculturation (inevitable) would do history’s work. But by the end of the twentieth century, it became clear that something different was going on. Many native people were indeed killed; languages were lost, societies disrupted. But many have held on, adapting and recombining the remnants of an interrupted way of life. They reach back selectively to deeply rooted, adaptive traditions: creating new pathways in a complex postmodernity (Clifford, 2013, p. 7). It remains controversial which social groups are to be considered as indigenous people (Pillay and Kathard, 2018; Rivas Velarde, 2015). Outside of the Americas or Oceania, it might be less clear who may rightfully claim this label. In the South African context, for instance, it would make the most sense when (only) applied to San hunter-gatherers and Khoekhoe herders (two minority ethnic groups) and not to Black South Africans of Bantuspeaking groups (the majority population). During the apartheid regime,

88

Yvonne Wechuli and Robel Afeworki Abay

even settlers of European descent claimed the label of indigeneity as Africans or “white Africans” – although unsuccessfully (Pillay and Kathard, 2018). The ILO defines indigenous peoples as (a) peoples who can be socially, culturally, and economically distinguished from the majoritarian society and who (b) inhabited the geographical region before colonisation/conquest or before present national borders had been established (Rivas Velarde, 2015). Historical context: The case of Romani people in Germany Romani is a colloquial term to refer to Romani-speaking, Indo-Aryan ethnic minority groups (Roma, Sinti, Sindhi, or Kale) in wide parts of Europe (Jones, 2013). Since Romani is related to Sanskrit, it is assumed that these groups migrated from the Indian subcontinent around 600 years ago (Demir et al., 2011). Romani people are the largest ethnic minority in Europe yet a heterogeneous group (Parekh and Rose, 2011). In Germany, Romani people from this first wave of migration are called Sinti. Other immigration waves took place in the 19th century with the end of Romani people’s enslavement in Romania (Matache, 2020), from the 1960s on as “guest workers” from the former Yugoslavia, as refugees from the Balkan wars in the 1990s, and to date as “economic refugees” from extremely marginalised backgrounds in Eastern Europe (Jonuz, 2014). Romani minority groups (specifically Sinti) fit the ILO definition of indigenous people as mentioned above: they might be socially, culturally, and economically distinguished from the majoritarian society and inhabited the geographical region of Germany before the German nation-building (1871) had been established. However, they do not fit the criteria of having a close connection to land – another often-mentioned criteria to qualify indigenous peoples (Jaffee and John, 2018; Rivas Velarde, 2018). This holds true even though the stereotype of Romani people as “wanderers” (Rose, 2007, p. 16) must be contested, as Romani people have historically been forced to live a migratory and nomadic lifestyle by marginalisation, stigmatisation, and exclusion (End, 2014). To date, Romani families are made homeless through repeated evictions in absence of alternative housing arrangements (Parekh and Rose, 2011). It might make sense to structurally compare the situation of Romani people in Germany with indigenous nations in colonial settler states as they share many similar experiences2: They have been cast as a “primitive” people (Robel, 2015) and subjected to violent assimilation and even missionary efforts including the forced removal of children from their families (Meier, 2018). Moreover, Romani people have not only been impoverished, criminalised, and institutionalised in workhouses while denying them their livelihoods in the form of trade certificates and access to campgrounds (Meier, 2018), but they were also victims of eugenics and forced sterilisation (Rose, 2007). Specifically, Romani populations in Europe were subject to genocide during the Nazi

Romani people in Germany: Learning from notion of indigeneity

89

regime and had to wait long – until 1985 – for an official apology by the Federal Republic of Germany (Robel, 2010). Living in the majoritarian society and attending school specifically have since been connected to inter-generational trauma (Jonuz and Weiß, 2020; Schuch, 2014; Strauß, 2022). To date, Romani people remain extremely marginalised, for instance, in education (Brüggemann, 2021) where students are frequently referred to special education (Jonuz, 2014) as families are assumed to be disinterested in education (Jonuz and Weiß, 2020). This aftermath of genocide and ongoing denial of livelihoods could be discussed as Necropolitics (Mbembe, 2003). Further developing Foucault’s concept of biopower, Mbembe analyses the continuity of colonial power, which legitimatises that some human lives are perceived to matter less than others in a postcolonial, racist, and ableist world. Thus, the amount of protection of lives depends on social positionality in the same geographic location. Necropolitics as a form of governing through death may, thus, illuminate how Romani people are disproportionally affected by health and socioeconomic disparities – physically and psychologically “kept alive but in a state of injury” (Mbembe, 2003, p. 21). Moreover, the still common labelling of Romani people by the pejorative “gypsy” hints at an assumed Egyptian decent (Robel, 2015). We read the use of such a geographically mistaken name as Epistemic Violence. In this regard, Epistemic Violence can be understood as a mechanism of constituting “the colonial subject as Other” (Spivak, 1988, p. 280). Pejoratively misnaming denies subaltern subjects any possibility of self-representation. Due to such ongoing Epistemic Violence, we find it indispensable for Disability Studies to consider the lived experiences of intersectional discrimination of Romani people. Disabling anti-Romani racism and marginalisation In the German context, disaggregated data on the complex intersectional relationship between disability, ethnicity, and racism is not available – partly due to historic reservations about collecting such data. Still, a comprehensive account of the multiple dimensions of disparities and inequity that Romani people with disabilities face could provide a needs assessment, e.g., in terms of access to the national welfare system and social services. Although knowledge on disability prevalence and health disparities is very inadequate (European Commission, 2014), nonetheless, ongoing injustices and marginalisation are highly relevant to health; the production of disability (Grech, 2015) if not “debilitating” (Puar, 2017, xiv).3 Public opinion research in Germany found that Romani people face a high level of rejection by the dominant society as ranked in comparison to other ethnic minorities (ZFA, 2014). Romani people face hostility of the majoritarian population in all countries researched (Parekh and Rose, 2011). For instance, every third German would be uncomfortable with having Romani

90

Yvonne Wechuli and Robel Afeworki Abay

neighbours. Instead of a commitment to historical responsibility due to past injustice, Romani people tend to be blamed for the hostility they are subject to (ZFA, 2014). Moreover, after the defeat of the Nazi regime and the liberation of Romani people from concentration camps, this ethnic minority could not count on the denazification of public services. Public administration retained staff involved in the genocide on Romani people in a targeted policy of disintegrating genocide survivors after 1945 (Strauß, 1998). German police systematically collected data on Romani people from 1899 to the 1970s – continuing to utilise data that helped the Nazi regime extinguish half a million Romani people (Reuss and Mack, 2019). Some genocide survivors had to face their specific perpetrators again, which was experienced as second persecution (Schuch, 2014).4 It is safe to say that the dominant society has been oblivious of past and ongoing injustice connected to genocide. Such obliviousness can be framed as Postcolonial Dismembrance (Ha, 2005; Hutson, 2011) to stress an active refusal to address historical injustices and legacies, as exhibited, for example, by the dominant German society concerning colonialism. Postand neo-colonial structures within racialised capitalism are disabling especially for many Black and People of Colour through racist stress, exploitation, and violence (Hutson, 2011), while “imperialism and colonialism stand as root causes of massive violations of human rights, famines, malnutrition, and the ecological degradation of indigenous land and as the root cause of growing impairment” (Meekosha and Soldatic, 2011, p. 1394) globally. Due to this widespread hostility understood as anti-Romani racism and expression of Gadje (non-Romani) privilege (Oprea and Matache, 2019), one can assume that – also in Germany – Romani people are discriminated against in health care and education (as disability-producing systems) compared to the majority population (Parekh and Rose, 2011). Against the background of stereotypes that cast Romani people as “parasitic” and “work-shy” (End, 2014) and the reported discrimination in public administration and social work (Zentralrat Deutscher Sinti und Roma, 2020), it can further be assumed that disabled Romani people will face difficulties in claiming disability benefits. Racialised disabled people, like Romani minority groups, may not claim the social position disability for themselves: Hutson (2011) suggests that disabled BIPoC strive for physical as well as psychological integrity in order to be able to defend themselves against racialising violence. Parallels emerge to other marginalised groups who either try to distance themselves from disability to avoid additional discrimination (Soldatic, 2015) or for whom impairments and poor health are expected and therefore not always labelled as disability (Puar, 2017). In any case, in the German context, the claiming of disability as an affirming identity can be framed as a white privilege. Referring to disabled people in Germany, the implicit connotation is talking about white disabled people – not only inservice provision (Afeworki Abay, Schülle and Wechuli, 2021).

Romani people in Germany: Learning from notion of indigeneity

91

Postcolonial perspectives on anti-Romani racism Why are experiences reported by Romani people as the biggest ethnic minority group in Europe in a classical nation-state and indigenous peoples in settler-colonial states so similar? What difference does it make to address intersectional discrimination of disabled Romani people by scholars in Disability Studies who are committed to respecting the significance of positionality? In addressing the fact that intersectional injustices against disabled Romani people are often overlooked in Disability Studies, the following questions are relevant: How can we establish critical, decolonial, and intersectional perspectives in Disability Studies? What have we learned from disability rights, feminist, and anti-colonial movements in terms of establishing the radical potential of collective action? After all, racism as a social structure draws on hundreds of years of colonial heritage: Colonialism was not only an economic process, but also one of imposing Eurocentric knowledge on the colonised. So postcolonialism has resonance for disability studies and helps to explain the dominance of perspectives from the metropole (Meekosha, 2011, p. 677). In Decolonial Studies, hierarchising relations between formerly colonised and colonising populations are described as “still with us” (Quijano, 2000, p. 218) after the end of colonial occupation, for instance, in a racist division of labour. With this understanding in mind, Yvonne Robel (2015) analyses the intersecting constructions of the colonised “others” and Romani people who were cast as “gypsies”. She concludes that no type of racism can be understood without the context of European colonialism. Racist structures have also shaped the colonisers’ home countries, based on Enlightenment stage models and dichotomies like culture/nature, rational/ emotional, or written/oral cultures. First descriptions of people cast as “gypsies” in the 15th century coincided with the Americas’ violent conquest and thus the disciplining of and an exoticising colonial fascination with non-European Others (Robel, 2015). Protestant missionaries targeting certain groups read as “gypsies” were often part of a global network and discourse on missionary activities in the colonies (Meier, 2018). In contemporary public conscience, Romani people feature as illegitimate immigrants (ZFA, 2014; Jonuz, 2014). Thus, only recently immigrated Romani people from Eastern European countries are marked as members of Romani minority groups, while their problems are essentialised (explained by their culture). In a neoliberal discourse that distinguishes entitled citizens from non-deserving others, Romani people were deEuropeanised – detached from their European nationality and framed as

92

Yvonne Wechuli and Robel Afeworki Abay

non-white foreigners and disposable aliens like (and compared with) people cast as “economic refugees”5 (Kóczé and Rövid, 2019). To date, colonially shaped perspectives dominate the media representation of Romani people as their alleged difference is explained by their (unchangeable) culture, and Romani people are repeatedly confirmed as belonging to what is perceived as the “Third World” in the middle of Europe (Robel, 2015). The vast majority of Romani people have frequently experienced discrimination in school or by the police, looking for work and/or housing. Unsurprisingly, it is widespread to hide Romani identities (Zentralrat Deutscher Sinti und Roma, 2006; Parekh and Rose, 2011). Romani people have to continually negotiate questions of in/visibility (Jonuz and Weiß, 2020) – or passing6 – connected to survival, which erases potential role models from public memory (Randjelović, 2016). Thus, economically and educationally successful Romani people who are integrated into mainstream society often stay invisible as minority members – many have correctly claimed their nationality to avoid being discriminated against, for instance, as Yugoslavian citizens (Jonuz and Weiß, 2020). Pluriversality: Beyond Eurocentric knowledge production There is insufficient theoretical ground and empirical evidence to reconstruct cultural approaches to disability from the subjective perspectives and understandings of Romani people since their self-advocacy organisations express reservations against making their culture understood to outsiders in the given historical context (Reuss and Mack, 2019). We concur with Mignolo (2007) that transcending Eurocentrism requires decolonising the coloniality of knowledge and embracing pluriversality. We therefore plea for pluriversality as a decolonial terrain that discards the assumed universality of Eurocentric knowledge and genuinely acknowledges other forms of knowledge systems such as indigenous knowledges as legitimate and valuable. Since Western culture seems to be the odd one out in defining disability as an overarching concept for very distinct phenomena – many indigenous languages worldwide lack a direct translation for disability (Rivas Velarde, 2018; Weaver, 2015) – it is reasonable to assume that the overarching concept of disability might not translate to Romanes either. This matters as “the imposition of one culture’s conception of disability on a differing culture may, in fact, create disability when only difference occurs” (Lovern, 2017, n.p.). Furthermore, it is evident that disabled people from many different indigenous cultures worldwide tend not to self-identify as disabled (Rivas Velarde, 2018). Indigenous people may dissociate themselves from Western disability labels perceived as alien to reconfirm their belonging to an indigenous culture that tries to accommodate community members with disabilities (Senier and Barker, 2013). Or they might not claim disabled identities to not amplify bodily and mind differences since disability tropes

Romani people in Germany: Learning from notion of indigeneity

93

were mobilised to justify the enslavement of African peoples and the attempted elimination of indigenous peoples (Soldatic, 2015). Nonetheles, many researchers (among others: Chilisa, 2019; Radcliffe, 2015; Smith, 1999) have increasingly highlighted the importance of developing indigenous methodologies: “We undervalue the legacy of indigenous knowledge, including the diverse understandings of impairment and disability” (Meekosha, 2011, p. 679). Referring to research with Māori communities, Smith (1999) highlights the relevance of decolonising Eurocentric methodologies and empirical projects about indigenous and subaltern communities, “When Indigenous peoples become the researchers and not merely the researched, the activity of research is transformed. Questions are framed differently, priorities are ranked differently, problems are defined differently, and people participate on different terms” (Smith, 1999, p. 193). Similarly, Radcliffe (2015) critically argues from postcolonial informed intersectional perspective in examining development policy and practice in Ecuador, how indigenous women, who are consistently marginalised by research on development policy, resist these neo-colonial interventions by foregrounding their situated knowledges that “create an alternative vision of postcolonial social difference” (p. 30). In this regard, Radcliffe highlights the importance of careful research collaboration with indigenous and subaltern communities before as well as during fieldwork in trying to overcome Epistemic Violence in the process of hegemonic knowledge production that is being generated about them: “Indigenous women’s insights suggest that epistemological doubt, analytical enquiry, and critique are not uniquely a privilege of a subject centred in the West” (Radcliffe, 2015, p. 290). She goes on further to argue that “Questions about access and mutually agreed qualitative methods with the women in each province were negotiated through sustained interactions with provincial federation and indigenous group leaders” (Radcliffe, 2015, p. 29). She concludes that engaging in a “decolonial approach” includes making the invisible visible and acknowledging knowledge systems (Radcliffe, 2015, p. 28). Therefore, indigenous communities should set the research agenda on social change themselves and not the other way around. Against the background of ongoing marginalisation and violence, it would not be surprising when members of Romani minority groups would not seek to identify as disabled. Due to accumulated mistrust towards the dominant culture when only family and community were experienced as safe (Schuch, 2014), one can also assume that community members (have to) look out for each other. If Romani culture values interdependence and inclusiveness (Weaver, 2015), or if notions of individual health might not be distinguishable from collective disabling experiences of dispossession and the pathologization of Romani culture (Senier and Barker, 2013) remain open questions.

94

Yvonne Wechuli and Robel Afeworki Abay

Implications for future research In what way does it make sense to think through the situation of Romani minority groups with Indigenous Studies? As two Gadje authors, it is not our place to tell Romani people whether to identify as indigenous or claim indigeneity. We are well aware of ongoing Epistemic Violence and appropriations of Romani people’s political struggles. Understanding ourselves as allies, we argue to draw on the notion of indigeneity to carve out similarities in terms of a structural location. We hope that reflecting such similarities in structural locations might start a critical dialogue of learning. The notion of indigeneity can remind us that the idea of homogenous nation-states is not only toxic and debilitating but also a recent invention of modernity. Rather than being inhabited by an ethnically, culturally, and linguistically homogenous population, European nation-states went through violent assimilation processes and struggles over cultural and linguistic dominance, for instance, the Prussian state as the predecessor of the German nation-state (Lindemann, 2002). Like the case in settlercolonial states, these assimilation processes are incomplete, and ethnic, cultural, and linguistic diversity has not disappeared and will not disappear (Clifford, 2013). One of the major problems for Romani minority groups is that they are not perceived as belonging to the place where they live, unlike Indigenous peoples within settler-colonials nation-state. Acknowledging Romani people as one of seven minority languages in Germany (Jones, 2013) is obviously not enough to tackle this misconception. The notion of indigeneity can sensitise us to endemic diversity and difference while it seems well suited to describe the geopolitics of knowledge and coloniality of power in relation to European nation-states (Quijano, 2000; Mignolo, 2011). Can claiming the indigenous label stress historical responsibilities, contribute to the decolonisation of former colonial powers, and make life less debilitating for Romani minority groups in Germany? Structurally comparing ethnic minorities and indigenous peoples may demonstrate parallel experiences and historical responsibilities. However, it can also suggest countercultural visions – when allowing for hybrid identities (Soldatic et al., 2018). Disability Studies should strive for epistemological diversity, a pluriversal rather than universal world (Mignolo, 2007; Ndlovu, 2014). Recognising, respecting, and valuing the multiple minoritarian, Southern, and/or Indigenous epistemologies is indispensable to overcome the single story of Western epistemologies established via Epistemicides (Grosfoguel, 2013). Considering minority cultures, disability concepts, and representations (Rivas Velarde, 2018) acknowledges languages as archives of ideas, traditions, and collective histories that might advance Western discourses on disability (Lovern, 2017). The notion of indigeneity can also point out inequalities – for instance, in health and education – and a lack of care by

Romani people in Germany: Learning from notion of indigeneity

95

health and other sectors (Gilroy and Donelly, 2016; Soldatic, 2015) – hoping that such reflections can counter carelessness as well as fetishisation. Therefore, we find it constructive to centre Indigenous epistemologies and ontologies in relation to disability to locate the lived experience of disability for Romani communities within European states. Notes 1 We are aware that scientific literature on Romani people is dominated by Gadje (non-Romani) authors who make a living out of their expertise on Romani minority groups and are only interested in “authentic” statements if they are easily quotable ( Randjelović, 2014). Both authors are positioned as Gadje which makes it paramount to stay mindful of the fetishisation of “authentic” identities ( Voronka, 2019). 2 Not attempting to provide a comprehensive account, these experiences resonate with debilitating experiences of indigenous peoples in the United States, Canada, Australia: the belittling of their epistemologies ( Lovern, 2008), past and ongoing efforts of assimilation ( Soldatic et al., 2018; Pillay and Kathard, 2018), the forced removal of children from their families ( Soldatic et al., 2018; Ineese-Nash, 2020), the denial of livelihoods ( Weaver, 2015; Senier and Barker, 2013), institutionalisation in psychiatry ( Burch, 2016), workfare ( Guillaume and Thill, 2018; Soldatic et al., 2018), forced sterilisation ( Soldatic, 2015), their overrepresentation in special education ( Weaver, 2015; Ineese-Nash, 2020), ongoing intergenerational trauma ( Townsend et al., 2018), and ongoing marginalisation ( Soldatic et al., 2018). 3 Similarly, undermining First Nations’ sovereignty (e.g., the confinement to reservations) has produced disability in various ways ( Weaver, 2015). 4 For instance, many US policies are continuously based on assuming a lack of abilities and competence in First Nations ( Weaver, 2015). 5 The notion of economic refugees is based on the myth of so-called Pull factors of economic migration ( Mayblin, 2016). Economically motivated migration is usually framed as voluntary and opposed to forced migration – a framing that many European migration regimes use to neglect and violate migrants’ human rights for deterrence ( Mayblin, 2016). Such a reduction of contemporary structural and institutionalised racism further reproduces a colonial narrative ( Soldatic and Gilroy, 2018). One can argue that disabling conditions of living and working ( Grech, 2015) are a just a different type of existential threat pushing people away from home ( Pisani, Grech, and Mostafa, 2016). 6 As one of us ( Wechuli, in review) has recently argued elsewhere, passing comprises of different facets that should all be acknowledged as legitimate and mundane survival strategies. Disabled people negotiate an ableist society by passing as (1) able-bodyminded, as (2) disabled or as (3) supercrip (extraordinary able despite disability). They either conceal their disability status to retain able-bodyminded privileges (1), showcase their disability status to claim accommodations (2) or combine both efforts in demonstrating extraordinary achievement and a visible disability status (3). While passing as able-bodyminded or supercrip forecloses accommodations, a showcased disability status is sometimes disbelieved. A crip coming out, thus, rather modifies than overcomes challenges around disclosure. All three facets are facilitated by structural factors, such as ableism and an assumed able-bodymindedness.

96

Yvonne Wechuli and Robel Afeworki Abay

References Afeworki Abay, R., Schülle, M., and Wechuli, Y. (2021) ‘Decolonising disability: Eine postkoloniale Reflexion auf Behinderung für die deutschsprachige Fluchtmigrationsforschung unter Berücksichtigung der intersektionalen Lebensrealitäten’, in M. Bach, L. Narawitz, J. Schröder, M. Thielen, and N. M. Thönneßen (eds.) FluchtMigrationsForschung im Widerstreit – Über Ausschlüsse durch Integration. Münster: Waxmann, pp. 117–130. Brüggemann, C. (2021) ‘Die Bildungssituation von Sinti und Roma in Deutschland im internationalen Vergleich’, in D. Strauß (ed.) Ungleiche Teilhabe. Zur Lage der Sinti und Roma in Deutschland. Mannheim: RhomnoKher, pp. 69–82. Bundesministerium des Inneren, und für Heimat (BMI) [Federal Ministry of the Interior and Community] (2020) ‘Nationale Minderheiten, Minderheitensprachen und die Regionalsprache Niederdeutsch’. Available at: https://www.bmi.bund.de/ SharedDocs/downloads/DE/publikationen/themen/heimat-integration/nationaleminderheiten/minderheiten-und-regionalsprachen-vierte-auflage.pdf;jsessionid= B3E5271FAA07EFAC58AE4A870E302CE0.live891?__blob=publicationFile&v= 10 (Accessed: 2 March 2014). Burch, S. (2016) ‘Disorderly pasts: Kinship, diagnoses, and remembering in American Indian-U.S. histories’, Journal of Social History, 50(2), pp. 362–385. Chilisa, B. (ed.) (2019) Indigenous research methodologies. Thousand Oaks, CA: Sage. Clifford, J. (2013) Returns: Becoming Indigenous in the twenty-first century. Cambridge, MA: Harvard University Press. Demir, M. et al. (2011) ‘Die größte Minderheit in Europa’, Aus Politik und Zeitgeschichte, 59(22-23), pp. 27–32. End, M. (2014) Antiziganismus in der deutschen Öffentlichkeit: Strategien und Mechanismen medialer Kommunikation; Studie für das Dokumentations- und Kulturzentrum Deutscher Sinti und Roma; Kurzfassung: Ansatz, Beispiele und Untersuchungsergebnisse. Heidelberg: Dokumentations- und Kulturzentrum Deutscher Sinti und Roma [Documentation and Cultural Center of German Sinti and Roma]. European Commission, Directorate-General for Health and Consumers (2014) Roma health report, health status of the Roma population – Data collection in the Member States of the European Union. Publications Office. Available at: https:// data.europa.eu/doi/10.2772/3140 Gilroy, J., and Donelly, M. (2016) ‘Australian Indigenous people with disability: Ethics and standpoint theory’, in S. Grech and K. Soldatic (eds.) International perspectives on social policy, administration, and practice, disability in the Global South: The critical handbook. Cham: Springer, pp. 545–566. Grech, S. (2015) ‘Decolonising Eurocentric disability studies: Why colonialism matters in the disability and Global South debate’, Social Identities, 21(1), pp. 6–21. Grosfoguel, R. (2013) ‘Epistemic racism/sexism, Westernized universities and the four genocides/epistemicides of the long 16th century’, Tabula Rasa, 19, pp. 31–58. Guillaume, L., and Thill, C. (2018) ‘An intersection in population control: Welfare reform and indigenous people with a partial capacity to work in the Australian northern territory’, Disability and the Global South, 5(2), pp. 1508–1530. Ha, K. N. (2005) ‘Macht(T)Raum(a) Berlin. Deutschland als Kolonialgesellschaft’, in M.-M. Eggers, G. Kilomba, P. Piesche, and S. Arndt (eds.) Mythen, Masken und Subjekte. Kritische Weißseinsforschung in Deutschland. Münster: Unrast, pp. 105–117. Hutson, C. (2011) ‘Krankheit/ Behinderung’, in S. Arndt and N. Ofuatey-Alazard (eds.) Wie Rassismus Aus Wörtern Spricht: (K)Erben des Kolonialismus im Wissensarchiv Deutscher Sprache: Ein Kritisches Nachschlagewerk. Münster: Unrast, pp. 403–411.

Romani people in Germany: Learning from notion of indigeneity

97

Ineese-Nash, N. (2020) ‘Disability as a colonial construct: The missing discourse of culture in conceptualizations of disabled Indigenous children’, Canadian Journal of Disability Studies, 9(3), pp. 28–51. Jaffee, L., and John, K. (2018) ‘Disabling bodies of/and land: Reframing disability justice in conversation with Indigenous theory and activism’, Disability and the Global South, 5(2), pp. 1407–1429. Jonuz, E. (2014) ‘Leben in einer Gesellschaft mit Rassismushintergrund’, in I. Randjelović and J. Schuch (eds.) Heimatkunde-Dossier, Perspektiven und Analysen von Sinti und Rroma in Deutschland. Berlin: Heinrich-Böll-Stiftung, pp. 48–57. Jones, M. P. (2013) ‘Endangered languages and linguistic diversity in the European Union’. European Union. Available at: https://www.europarl.europa.eu/studies/ Jonuz, E., and Weiß, J. (2020) (Un-)Sichtbare Erfolge: Bildungswege von Romnja und Sintize in Deutschland. Wiesbaden: Springer VS. Kóczé, A., and Rövid, M. (2019) ‘The Europeanisation of racial neoliberalism: The case of “Roma” and “refugees”’, in I. C. Gómez and M. End (eds.) ENAR Anti-Racism in focus, dimensions of antigypsyism in Europe. Brussels: European Network Against Racism and Central Council of German Sinti and Roma, pp. 107–122. Lindemann, G. (2002) ‘Die preußisch-deutsche Reichsgründung 1870/71 und die polnische Minderheit’, Kirchliche Zeitgeschichte, 15(1), pp. 24–51. Lovern, L. L. (2008) ‘Native American worldview and the discourse on disability’, Essays in Philosophy, 9(1), n.p. Lovern, L. L. (2017) ‘Indigenous perspectives on difference’, Journal of Literary and Cultural Disability Studies, 11(3), pp. 303–320. Matache, M. (2020) ‘It is time reparations are paid for Roma slavery’, Al Jazeera, 5 October. Available at: https://www.aljazeera.com/opinions/2020/10/5/it-is-timereparations-are-paid-for-roma-slavery. (Accessed: 29 December 2020) Mayblin, L. (2016) ‘Complexity reduction and policy consensus: Asylum seekers, the right to work, and the ‘pull factor’ thesis in the UK context’, The British Journal of Politics and International Relations, 18(4), pp. 812–828. Mbembe, A. (2003) ‘Necropolitics’, Public Culture, 15(1), pp. 11–40. Meekosha, H. (2011) ‘Decolonising disability: Thinking and acting globally’, Disability and Society, 26(6), pp. 667–682. Meekosha, H., and Soldatic, K. (2011) ‘Human rights and the Global South: The case of disability’, Third World Quarterly, 32(8), pp. 1383–1397. Meier, V. (2018) ‘Neither bloody persecution nor well intended civilizing missions changed their nature or their number’, Critical Romani Studies, 1(1), pp. 86–126. Mignolo, W.-D. (2007) ‘Delinking: The rhetoric of modernity, the logic of coloniality and the grammar of de-coloniality’, Cultural Studies, 21(2-3), pp. 449–514. Mignolo, W.-D. (2011) ‘Geopolitics of sensing and knowing: On (de)coloniality, border thinking and epistemic disobedience,’ Postcolonial Studies, 14(3), pp. 273–283. Ndlovu, M. (2014) ‘Why indigenous knowledges in the 21st century? A decolonial turn’, Yesterday and Today, 11, pp. 84–98. Oprea, A., and Matache, M. (2019) ‘Reclaiming the narrative: A critical assessment of terminology in the fight for Roma rights, in I. C. Gómez and M. End (eds.) ENAR Anti-racism in focus, dimensions of antigypsyism in Europe. Brussels: European Network Against Raisism and Central Council of German Sinti and Roma, pp. 276–299. Parekh, N., and Rose, T. (2011) ‘Health inequalities of the Roma in Europe: A literature review’, Central European Journal of Public Health, 19(3), pp. 139–142. Pillay, M., and Kathard, H. (2018) ‘Audiology and speech-language pathology: Practicioners’ reflections on indigeneity, disability and neo-colonial marketing’, Disability and the Global South, 5(2), pp. 1365–1384.

98

Yvonne Wechuli and Robel Afeworki Abay

Pisani, M., Grech, S., and Mostafa, A. (2016) ‘Disability and forced migration: Intersections and critical debates’, in S. Grech and K. Soldatic (eds.) Disability in the Global South. Cham: Springer, pp. 285–301. Puar, J. (2017) The right to maim: Debility, capacity, disability. Durham and London: Duke University Press. Quijano, A. (2000) ‘Coloniality of power and Eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Radcliffe, S. A. (ed.) (2015) Dilemmas of difference: Indigenous women and the limits of postcolonial development policy. Durham and London: Duke University Press. Randjelović, I. (2014) ‘Ein Blick über die Ränder der Begriffsverhandlungen um “Antiziganismus”’, in I. Randjelović and J. Schuch (eds.) Heimatkunde-Dossier, Perspektiven und Analysen von Sinti und Rroma in Deutschland. Berlin: HeinrichBöll-Stiftung, pp. 19–37. Randjelović, I. (2016) ‘“Auf vielen Hochzeiten spielen”: Strategien und Orte widerständiger Geschichte(n) und Gegenwart(en) in Roma Communities’, in K. N. Ha, N. Lauré al-Samarai, and S. Mysorekar (eds.) re/visionen: Postkoloniale Perspektiven von People of Color auf Rassismus, Kulturpolitik und Widerstand in Deutschland. 2nd edn. Münster: Unrast, pp. 265–280. Reuss, A., and Mack, J. (2019) ‘Data Collection on equality, discrimination and antigypsyism’, in I. C. Gómez and M. End (eds.) ENAR Anti-racism in focus, dimensions of antigypsyism in Europe. Brussels: European Network Against Racism and Central Council of German Sinti and Roma, pp. 246–260. Rivas Velarde, M. C. (2015) Indigenous persons with disabilities: Access to training and employment. Discussion paper. Available at: https://www.ilo.org/wcmsp5/ groups/public/---ed_emp/---ifp_skills/documents/publication/wcms_396412.pdf (Accessed: 23 November 2020) Rivas Velarde, M. C. (2018) ‘Indigenous perspectives of disability’, Disability Studies Quarterly, 38(4), n.p. Robel, Y. (2010) ‘Gedenkpolitik als verweigerte Anerkennung: Die bundesdeutsche Erinnerung an Roma und Herero’, in C. Czycholl, I. Marszolek, and P. Pohl (eds.) Zwischen Normativität und Normalität: Theorie und Praxis der Anerkennung in interdisziplinärer Perspektive. Essen: Klartext, pp. 287–303. Robel, Y. (2015) ‘Antiziganismus postkolonial betrachtet’, in T. Baumann (ed.) Antiziganismus: Soziale und historische Dimensionen von “Zigeuner”Stereotypen. Heidelberg: Dokumentations- und Kulturzentrum Deutscher Sinti und Roma [Documentation and Cultural Center of German Sinti and Roma], pp. 184–199. Rose, R. (2007) Roma and Sinti: Human rights for Europe’s largest minority. Heidelberg: Dokumentations- und Kulturzentrum Deutscher Sinti und Roma [Documentation and Cultural Center of German Sinti and Roma]. Schuch, J. (2014) ‘Antiziganismus als Bildungsbarriere’, in I. Randjelović and J. Schuch (eds.) Heimatkunde-Dossier, Perspektiven und Analysen von Sinti und Rroma in Deutschland. Berlin: Heinrich-Böll-Stiftung, pp. 38–47. Senier, S., and Barker, C. (2013) ‘Introduction’, Journal of Literary and Cultural Disability Studies, 7(2), pp. 123–140. Soldatic, K. (2015) ‘Postcolonial reproductions: Disability, indigeneity and the formation of the white masculine settler state of Australia’, Social Identities, 21(1), pp. 53–68. Smith, L. T. (ed.) (1999) Decolonising methodologies: Research and indigenous peoples. New York, NY: Palgrave. Soldatic, K., and Gilroy, J. (2018) ‘Intersecting indigeneity, colonialisation and disability. Disability and the Global South, 5(2), pp. 1337–1343.

Romani people in Germany: Learning from notion of indigeneity

99

Soldatic, K. et al. (2018) ‘Challenges in global Indigenous – Disability comparative research, or, why nation-state political histories matter’ Disability and the Global South, 5(2), pp. 1450–1471. Spivak, G.-C. (ed.) (1988) Can the Subaltern Speak? Wien and Berlin: Turia and Kant. Strauß, D. (ed.) (2022) Ungleiche Teilhabe. Zur Lage der Sinti und Roma in Deutschland. Wiesbaden: Springer VS. Strauß, D. (1998) ‘“da muß man wahrhaft alle Humanität ausschalten …”: Zur Nachkriegsgeschichte der Sinti und Roma in Deutschland’, in Landeszentrale für politische Bildung Baden-Württemberg and Verband Deutscher Sinti and Roma Landesverband Baden-Württemberg (eds.) Baustein der Landeszentrale für Politische Bildung Baden-Württemberg, Zwischen Romantisierung und Rassismus: Sinti und Roma 600 Jahre in Deutschland. Stuttgart: Landeszentrale für Politische Bildung Baden-Würtemberg, pp. 26–34. Townsend, C. et al. (2018) ‘Inclusion of marginalised Aboriginal and Torres Strait Islander peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)’, Disability and the Global South, 5(2), pp. 1531–1552. Voronka, J. (2019) ‘The mental health peer worker as informant: Performing authenticity and the paradoxes of passing’ Disability and Society, 34(4), pp. 564–582. Weaver, H. N. (2015) ‘Disability through a native American lens: Examining influences of culture and colonisation’ Journal of Social Work in Disability and Rehabilitation, 14(3-4), pp. 148–162. Wechuli, Y. (in review) ‘Passing as able-bodyminded, disabled, or supercrip: Rethinking impression management strategies through a disability lens’ Symbolic Interaction. Zentralrat Deutscher Sinti und Roma [Central Council of German Sinti and Roma] (2006) ‘Ergebnisse der Repräsentativumfrage des Zentralrats Deutscher Sinti und Roma über den Rassismus gegen Sinti und Roma in Deutschland’. Available at: https://osteuropa.lpb-bw.de/fileadmin/osteuropa/pdf/Zentralrat_Umfrage_ Rassismus.pdf (Accessed 2 March 2024). Zentralrat Deutscher Sinti und Roma [Central Council of German Sinti and Roma] (2020) ‘Monitoring zur Gleichbehandlung von Sinti und Roma und zur Bekämpfung von Antiziganismus in Deutschland - Antiziganismus in der öffentlichen Verwaltung und Sozialen Arbeit’. Available at: https://zentralrat.sintiundroma.de/wp-content/ uploads/2019/11/rcm-y3-c2-germany-local.pdf (Accessed 2 March 2024). Zentrum für Antisemitismusforschung (ZfA) [Center for the research on antisemitism] (2014) ‘Zwischen Gleichgültigkeit und Ablehung: Bevölkerungseinstellungen gegenüber Sinti und Roma’. Available at: https://www.antidiskriminierungsstelle.de/ SharedDocs/downloads/DE/publikationen/Expertisen/expertise_bevoelkerungseinstellungen_gegenueber_sinti_und_roma_20140829.pdf?__blob=publicationFile&v=6 (Accessed: 2 March 2024).

6

Africa and the epistemic normativity of disability Elvis Imafidon and Kenneth Uyi Abudu

Introduction Discourses on disability, with specific reference to its nature, how it comes into being, and how it can be treated or managed, are often addressed from an essentially medical-scientific perspective. Attempts to explain forms of impairment such as albinism, blindness, and angular kyphosis often emerge from medical lenses where they are explained and understood as other-thanideal bodily conditions that require the attention of an expert to return the disabled to ableness. For example, the cause of albinism has been explained by medical practitioners to be a lack of ‘pigmentation or colouring due to certain biological conditions such as the absence of melanin (the substance that gives a person his or her colour and other genetic mutations)’ (Imafidon, 2019, p. 10). There are also medical explanations for blindness and angular kyphosis, which could be a result of glaucoma or cataract, post-tuberculosis kyphotic deformity, kyphosis associated with skeletal dysplasia (type 1), neurofibromatosis, Morquio syndrome, or achondroplasia (McMaster and Singh, 1999, p. 1368), respectively. Such medical-scientific understanding of disability feeds on the received view by seeing forms of disability from the perspective of biological or anatomical individuated objects of study that are fundamentally abnormal and pathological since it is a flaw in or failure of the biological system of an individual. The goals of intervention, therefore, include cure via medical intervention, a return to the bodily norm, best possible management, or improvement of the physical condition via medical-scientific informed rehabilitation (i.e., the adjustment of the person with disability to the condition and to the environment). Persons with disabilities are expected to take advantage of the wide range of medical-scientific technologies and services available to them and to spend time in the position of patient or learner, receiving assistance from skilled professionals (Olkin, 1999). In a sense, the medical model of disability portrays persons with disability as problems to be solved, and this fails to take into account the different components of a person’s existence as a whole, not just a particular body part (Thomas and Woods, 2003). By “whole”, we mean that understanding a particular individual’s DOI: 10.4324/9781003280422-7

Africa and the epistemic normativity of disability

101

disability should not be done solely from a medical perspective as there are other factors such as the psycho-social, cultural, and ontological factors to be considered in a disability discourse. This position is plausible in the subSaharan African traditions where, beyond the medical model of disability, other models as outlined above are often taken seriously. Thus, the medical model of disability although an important model has several limitations: in the first place, it is only “a” model and not “the” model for the understanding of disability, particularly as it focuses essentially on the physiological facet of the human person. According to Kasser and Lytle, ‘the medical model of disability focuses solely on the limits associated with a person’s physical condition, essentially ‘disregarding’ settings that may negatively affect a person’s functional abilities’ (2005, p. 11). Critical Disability Studies (CDS) therefore emerges as a critique of the linear and parochial medical-scientific approach to disability studies, which is often considered western-centric, as it takes into cognisance and scrutinises not only ‘bodily impairments but the social norms that define particular attributes as impairments, as well as the social conditions that concentrate stigmatised attributes in particular populations’ (Schalk, 2017, p. 1). This Critical Disability approach has two profound implications: one is that aside the medical cum scientific model of disability, CDS has given rise to other models such as the social, religious, economic, and feminist models. The second implication is that CDS promotes a decolonial, postcolonial, and an inclusive approach to the study of disability and, by extension, recognises the social, cultural, ontological, psychological and physiological, and philosophical dimensions to disability. As a result, postcolonial disability discourses are an attempt to decolonise, deconstruct, decentre, and endogenise disability studies, shifting the focus from and beyond the received view of colonial, Western science and medicine to the multi-layered lenses from which disability can be understood and navigated in outside of the western context. More so, it problematises the very concept of disability as a thick and essentially contested concept and the radical binary of ableness and disability that permeates preCDS. CDS in general and the philosophy of disability question the ontological, epistemological, and ethical structures, frameworks, and normativites that shape our understanding of disability (Meekosha and Shuttleworth, 2009). It is within this postcolonial, decolonial, contextual, critical, inclusive, and deconstructive discourse of disability that this chapter explores the epistemic normativity of disability in sub-Saharan African traditions. There is a growing literature on a critical, decolonial approach to disability studies in sub-Saharan Africa. They include the works of Adegbindin (2018), Grech (2011), and Imafidon (2019, 2021). These scholars argue that the uncritical use of the Western medical framework of disability studies suppresses and marginalises the voices of not only disabled people who live in the global South but also the voices of various thinkers who intend to theorise how disability can be understood from non-Western and nonscientific perspectives. More so, the uncritical use of CDS frameworks that

102

Elvis Imafidon and Kenneth Uyi Abudu

emerge from the West could ignore contextual ontological, epistemological, and axiological issues that emerge from the African place. Thus, in this chapter, our primary focus is to examine the philosophical cum epistemological framework that emerges from sub-Saharan African perspective of disability and how it helps in understanding the concrete experiences and life-world of persons with disability in Africa. In the first section, we begin by theorising the African epistemology of disability as merging from a sub-Saharan African communitarian framework. We show that epistemic claims about disability are collectively produced and sustained in a fundamentally collective existence. In the second section, we examine the intersection of disability in African sub-Saharan communitarian philosophy with issues of gender, identity, and personhood. We then proceed in the third section to expose a humanist and an inclusive approach to disability as a model that emerges from sub-Saharan African communitarian philosophy, with a strong emphasis on the concept of Ubuntu. We show that while sub-Saharan African communitarian philosophy provides a basis for understanding the epistemic violence, injustice, and harm that persons with disability go through in sub-Saharan African societies, it also possesses the potential to enable the development of an inclusive theory of disability. The African epistemology of disability in the communitarian framework Sub-Saharan African communitarian philosophy is often regarded as one of the most important aspects of sub-Saharan African philosophical studies and its different strands have been propounded and defended by thinkers such as Gyekye (1992), Mbiti (1969), Tutu (1999), and a host of others. SubSaharan African communitarian philosophy is a political, moral, ontological, epistemological, and existential philosophy which has been defended by African scholars as a unique and authentic African philosophy that defines the African way of life and forms the basis for an African identity, as well as distinguishes African cultures from other (mostly) liberal, non-African cultures (Imafidon, 2021). Eze defines African communitarianism ‘as a discursive formation between the individual and the community … is a view which eschews the dominant position of many Africanist scholars on the primacy of the community over the individual’ (2008, p. 386). Eze’s definition of African communitarianism suggests that in African communitarianism, there exists a relationship between the community and the individual. This leads to the two types of African communitarianism which explain the extent to which the relationship between the community and the individual is established and possibly sustained: the radical and moderate African communitarianism. According to Gyekye, radical communitarianism is a point of view in which the community is regarded as always preceding the individual and in which this idea of the community fails to

Africa and the epistemic normativity of disability

103

recognise the individuality of the individual and the rights that inherently belong to a human being insofar as a person is essentially autonomous (1992, p. 104). Proponents of radical communitarianism such as Menkiti argue that the community takes precedent over the individual, that is, a person as a moral agent in the African communitarian framework, is subject and confined to the community’s values and norms. Menkiti puts it by stating that ‘it is the community which plays a crucial role in the individual’s acquisition of personhood’ (1984, p. 179). Thus, to the radical communitarians, it follows therefore that there is not only an “ontological primacy” of the community over the individual, but that the community values are necessary in the conferment of personhood on the individual. Moderate communitarianism, on the other hand, holds that the rights of the individual are recognised in a communitarian work. This stands in contrast to the radical form of communitarianism which leaves no room for any form of individuality or individuals’ rights. Gyekye, who is a key proponent of moderate communitarianism, argues that the radical form of communitarianism is problematic as it does not recognise the individuals’ rights in the communitarian framework. As a consequence, Gyekye argued that his own type of (moderate communitarianism) is a more accurate theorisation of communitarianism in African cultures, which gives ‘… equal moral status to both the community and the individual …’ (1992, p. 107). It is important to state here that there has been an age-long tension between the proponents of radical and the moderate communitarianism as both have been arguing over the years that one is superior to the other. However, for the purpose of clarity and direction, this is not our point of discourse in this section. One theme that is central to the understanding of sub-Saharan African communitarianism, radical or moderate, is the concept of Ubuntu which has a socio-political and metaphysical cum ontological framework. For the sociopolitical framework which was expounded by Tutu to promote the spirit of forgiveness, especially during the various hearings of the Truth and Reconciliation Commission, Ubuntu represents the idea that all beings ought to live peacefully in harmony and cohesion. The metaphysical cum ontological framework reflects the emphasis that Ubuntu places on the human person and his/her components, that is, the descriptive-physical dimension and the normative-social dimension. For the descriptive components, it has to do with the physical features of the human person such as the head, hands, legs, etc., while the ontological/social component has to do with his being with others in the communitarian framework. Generally, Ubuntu is a term in subSaharan African philosophical literature which means humanness and it has been defended by various African scholars. Prominent among these scholars is Mbiti who, in his famous African Religions and Philosophy (1969), captures Ubuntu: Only in terms of other people does the individual become conscious of his own being, his own duties, his privileges and responsibilities towards

104

Elvis Imafidon and Kenneth Uyi Abudu

himself and towards other people. When he suffers, he does not suffer alone but with the corporate group; when he rejoices, he rejoices not alone but with his kinsmen, his neighbours and relatives whether dead or alive. Whatever happens to the individual happens to the whole group and whatever happens to the whole group happens to the individual. The individual can only say: “I am, because we are; and since we are, therefore I am.” This is the cardinal point in the understanding of the African view of man (1969, pp. 108–109). Evident in Mbiti’s assertion is that Ubuntu as a concept seeks to establish a harmonious relationship between the individual and the community as the individual cannot flourish without the community, and neither can the community flourish without the individual. This makes Ubuntu as an African concept stand in contradistinction to what is obtainable in European philosophy where individualism takes precedence over communitarianism. According to Rettova, while the community is seen as a combination of individuals in European philosophy, in African communitarian framework, “Ubuntu constructs personhood starting with the community: it is not the ‘I’ that constructs a ‘we’ but a ‘we’ that constitutes an ‘I’” (2020, p. 32). To be a person, therefore, is to recognise the fact that others exist and that relationship must be established with them. This is evident in Shuttle’s conceptualisation of Ubuntu. The name for the acquired quality of humanity that is the characteristic of a fully developed person and the community with others. It thus comprises values, attitudes, feelings, relationships and activities, the full range of expressions of the human spirit (Shutte, 2001, p. 31). In the same vein, Ramose sees the concept of Ubuntu as the essence of being an African, stating: Ubuntu is the root of African philosophy. The being of an African in the universe is inseparably anchored upon Ubuntu. Similarly, the African tree of knowledge stems from Ubuntu with which it is connected indivisibly. Ubuntu then is the wellspring flowing with African ontology and epistemology … African philosophy has long been established in and through Ubuntu (1999, p. 49). The philosophy of Ubuntu, often succinctly captured in the phrase ‘a person is a person through other persons’ (Tutu, 1999), has been criticised on the basis that it is vehemently anthropocentric as it tends to exclude nonhuman entities from the scheme of things. For instance, Horthemske, who is regarded as a famous animal rights activist in South Africa, argued that with Ubuntu, it means that the value of non-human entities in the environment

Africa and the epistemic normativity of disability

105

will be measured against the derivative from human essence (2015, p. 5). The implication of this is that the human will not only be regarded as the fundament of ontology; he will also be seen as superior to non-human entities. But this interpretation of Ubuntu is problematic as it is removed from the concrete realities in sub-Saharan African communities. In subSaharan African cultures, personhood is not always an attribute of the human and can as well be a quality of the non-human. Lived evidence of this can be seen in totemic practices and the fluidity of personhood that permeates sub-Saharan African communities. Ikuenobe resonates this when he says that humans are considered to be part of the harmonious aspects of the composite reality, which is fundamentally a set of mobile life forces. Natural objects and reality are interlocking forces (2006, p. 63). Consequently, contrary to the argument of Horthemske, Ubuntu is only narrowly concerned with the interconnectedness of humans, but more broadly and more importantly concerned with the interconnection of all beings, human and non-human. Within the communitarian framework of Ubuntu is a robust theory of the human person, which is our focus here as it provides a basis for understanding the normativity of disability in African traditions. Different African philosophers have deduced theories about human personhood from African philosophical thought. Such scholars include Gbadegesin (1991), Imafidon (2012), Makinde (1984), Menkiti (1984), and Oyeshile (2006). Three basic arguments are deducible from their respective theorisations: first, personhood in the sub-Saharan African understanding negates the Cartesian cogito which recognises only the self without its relational others. Second, human persons have both biological and non-physical features, often theorised in dualistic, tripartite, or pentachotomistic terms, depending on the cultural background of the particular thinker. Third, human personhood can be theorised in two levels, the descriptive (ontological-metaphysical) and normative (social-moral) conceptions of the human person. The examination of the constituent parts-physical and non-physical-of the human person as held in a sub-Saharan African culture, as well as their purposes or significance in the scheme of things, is the descriptive idea of a person in sub-Saharan African traditional thought (Imafidon, 2012, p. 4), while the normative conception of the human person in African communitarian framework analyses the person’s social and moral status, which implies that personhood is not seen as a given; it is what is internalised and committed to by learning the values that the society has put in place. From this perspective, a person is not just any human being, but one who has attained the status of a responsible member of the society through action (Onah, 2002, p. 78), and this action centres around abiding by the values and norms of the society, such as respect for elders, sense of hospitality, good relations, sanctity of life, etc. According to Gbadegesin, in the Yoruba thought system, the human person (ènìyàn) has a tripartite dimension (see Gbadegesin, 1998, p. 149):

106

Elvis Imafidon and Kenneth Uyi Abudu

ara (body), èmí (the life-giving element or vital principle), and orì (destiny; determinant of personality). The human person in Yoruba thought system, broadly construed, has his descriptive dimension and they are those physical and non-physical features. The physical body ara is a creation of Orisanla (the Yoruba God of creation) who is charged by Olodumare (God of Heaven) with the responsibility of moulding human beings out of clay. These bodies were moulded in different shapes, some of which are characterised by their beauty and some by their ugliness and deformity (Makinde, 1984, pp. 189–190). The spiritual non-physical dimension of the human person consists of emi (soul) which has its physical realisation in the human heart which bears the same name; ori (the inner head) which has its physical counterpart in the human head; and ese (legs) which is also known by the same name on the physical plane (Abimbola, 1971, p. 77). Another physical component of the human person in Yoruba traditional thought is the intestines (ifun) which are often seen as a source of resourcefulness and strength. In particular, the Yorubas believe that it is the intestines (ifun) that determine one’s strength. Bolaji Idowu captures this by stating that ‘the person’s intestines are regarded as the source of strength and resourcefulness’ (1962, p. 170). Therefore, when we say of a person that Ko nifunninu (He has no intestines), we are only implying that the person in question is not strong and also that he has no resilience (see Oladipo, 1992, p. 16). We cannot also rule out the importance of okan (heart), eje (blood), and opolo (brain) as some of the basic physical components of the human person. The importance of these components is that they are often seen as the link to the practice of traditional medicine. According to Oladipo: Both Opolo and Okan are regarded by the Yoruba as having some connections with human conscious activities - thinking, feeling, etc. Opolo is regarded by them as having connections with sanity and intelligence. Thus when a person is insane, they say Opolo re ko pe (his brain is not complete or not in order) … Okan, (physical heart) which, apart from being closely connected with blood, is also regarded as the seat of emotion and psychic energy. A person who is courageous is said to “have a heart” (oniokan) … (1992, p. 16). We cannot overemphasise the importance of emi in the Yoruba conception of personhood as it is the animating force of every human person and the seat of human existence. In the Yoruba ontology, it is believed that it was the Olodumare (God of Heaven) that gave the human person the emi. When the bodies are formed by Orisanla (the primordial divinity), these bodies are given emi (animating force) by the Olodumare. Thus, when the body dies, the emi returns to Olodumare which makes reincarnation a possibility in Yoruba traditional thought. In the Akan thought system, it has been argued that the human person can be conceived from a dualistic perspective. For instance, Gyekye argued that

Africa and the epistemic normativity of disability

107

the human person consists of Okra (that which is likened to the soul) and nipadua (body) (1984, p. 200). However, Wiredu was quick to issue a stern warning by stating that the Okra cannot be equated to the English soul (1992). His reason is that the Okra is made up of a quasi-material substance. Another reason is that some medicine men are capable of seeing the Okra and it is also believed that the Okra forbids some foods (Imafidon, 2012, p. 4). Appiah gives a vivid description of the human person in the Asante thought system by stating that the human person can be conceived from a tripartite conception. … a person consists of a body (nipadua) made from the blood of the mother (the mogya); an individual spirit, the sunsum, which is the main bearer of one’s personality; and a third entity, the okra. The sunsum derives from the father at conception. The okra, a sort of life force that departs from the body only at the person’s last breath; is sometimes as with the Greeks and the Hebrews, identified with breath; and is often said to be sent to a person at birth, as the bearer of ones nkrabea, or destiny, from Nyame. The sunsum, unlike the okra, may leave the body during life and does so, for example, in sleep, dreams being thought to be the perceptions of a person’s sunsum on its nightly peregrinations … (2004, p. 28). The arguments regarding the nature of the human person in Yoruba, Akan, and Asante thought systems are similar to what is obtainable in the Esan thought system. Regarding the descriptive account of the human person in Esan traditional thought system, Imafidon argues that the human person (Oria) has a body (egbe), spirit (elimin), and the guardian angel (ehi). According to him, all of these features put together do not yet become a person until God (Oselobua) sparks a vital force or energy into the composite (2014, p. 42). This force is called orion which is translated as strength. The body (egbe) comprises the hand (abo), legs (awe), and the head (uhomon). The egbe (body) is seen as a concrete, tangible, and made of flesh, blood, and bones (Ibid). The body (egbe) symbolises the personality of man, and in it, we have the brain (Erhere), which is the seat of control, and the eyes (elolo). According to Alli, the Esan believe that without the brain and the eyes, one becomes a beast. The special gift of man will no longer be there. It is the brain that really makes man what he is (2011, p. 19). The spirit is also central to understanding the descriptive of the human person. The spirit is called elimin and it is often what reincarnates, joins the ancestral court, or becomes a deified divinity after the death of the physical body. The elimin has his last meal (ema elimin), after which a rite is performed during the second burial rites of the dead. It is believed that after the death of the body, the spirit leaves the now lifeless body and embarks on a tedious journey to the spirit realm, hence being symbolically fed before his burial (Imafidon, 2014, p. 12). Evidently, in Esan thought system, the life of the human person

108

Elvis Imafidon and Kenneth Uyi Abudu

does not end at death, as the individual is expected to reincarnate and take the form of another person, usually within the immediate family of the demise. What does not die here is the elimin (the spirit). Another descriptive feature of the human person in the Esan thought system is mind, which is called okhoe. The mind (okhoe) enables the human person in Esan thought system to remember things. Obinyan describes the mind (okhoe) as follows: the human transcendental capacity which enables man to recall past events, conceive of activities which are not immediate to his sense organs, and which also enables him to introspect into the future is described as spirit (Okhoe) (Ibid). It is important to also mention the Ehi (destiny guardian) here. The Ehi directs the human person through the paths of life. Accordingly, Imafidon states that the Ehi is similar to what Socrates calls eudamonia (good spirit), or the Holy Spirit in Christianity (Imafidon, 2014, p. 12). Thus far, we have fairly discussed the descriptive component of the human system using some African thought systems as our guide, and from the discourse, it is safe to say that the descriptive component of the human person consists of the body, an animating force, and a destiny. By this, we can conclude that the human person is made up of physical, spiritual, and quasi-materials and he is capable of manifesting beyond his present status. Essentially, we argued that the human person has a normative dimension to it and the next paragraph examines the issue. The normative dimension of the human person is simply that the human person in sub-Saharan African thought system is not a being that exists alone; his being is complete in accordance with the forming of relations with others, and this can be found in earlier examined sub-Saharan African thought systems. In the Yoruba thought system, for instance, Gbadegesin argued that the human person (ènìyàn) has a moral and normative meaning: to say that someone “is not ènìyàn” (kììşéènìyàn) means that person lacks morality. This normative content of the human person is inextricable linked to the relationship of the person to his/her immediate community: ‘A person whose existence and personality is dependent on the community is expected in turn to contribute to the continued existence of the community. This is the normative dimension of the concept of person (Ènìyàn)’ (1991, p. 58). In Esan thought system, Obinyan corroborates Gbadegesin’s postulation when he stated that “man in Esan ontology is ‘Oria no riwiusuagbon’ or ‘Oria no riwiagbelo’which is translated as ‘man is a communal being with-others; and he is created by the Supreme Being’ (2013, p. 4). Therefore, to be a person in the subSaharan African communitarian sense is to work judiciously towards the attainment of social order and civility in one’s immediate community. This implies that a person is often not conferred on infants, insane and social misfits; this explains why the human person in the sub-Saharan African communitarian framework has three levels of existence: the first level is that he is an individual; secondly, he belongs to a group; and thirdly, he is a member of a particular community. This is because all of them are constantly interacting and inter-penetrating one another (Ndubuisi, 2004, p. 425). The implication

Africa and the epistemic normativity of disability

109

of this, to Gyekye, is simply: (i) that the human person does not voluntarily choose to enter into a human community, that is, the community life is not optional for any individual person; (ii) that the human person is at once a cultural being; (iii) that the human person cannot – perhaps, must not – live in isolation from other persons; (iv) that the human persons is naturally oriented towards other persons and must have relationship with them; (v) that social relationships are not contingent but necessary; and (vi) that following from (iv) and (v), the person is constituted, but only partly …, by social relationships in which he necessarily finds himself (1992, p. 104). Evidently, a person who lives in a sub-Saharan African communitarian framework is expected to internalise some communal values as the person is not only a being for himself, but also a being for others. These communal values include respect, solidarity, caring for others, and reciprocal obligation. It is instructive to point out here that while the human person is expected to promote a communitarian sense of belonging, it does not imply that his rights are to be confined within such a communitarian framework. However, it is by internalising these values that the normative sense of the human person can be fully realised. The implication of this is that a human person who does not observe or internalise these values would be considered as a social misfit. In Esan conceptual framework, for instance, Imafidon states that such person might be termed a goat, and this can be captured with the following expressions: Ū Iūe mi biēbhe (You act like a goat) ŪūIūe mi biō ria (You donot act like a person) (Imafidon, 2012, p. 9). This implies that anybody who does not promote the already existing communal values is often seen as a non-person. Normatively, therefore, a human being can be a person or non-person (p v ~p) for unlimited time all through their life; and also, that only some human beings are persons at any given point in time (Onah, 2002, p. 79). While the general discourse on personhood in sub-Saharan African communitarian framework can be situated within the descriptive and normative components, it does not actually imply that these components mark the end to the discourse on personhood as the human personhood often evolves with time. Specifically, in the Black African community, the process of becoming a person has no end. Even admission to the society of the diminished ancestors does not guarantee a complete personal existence, for they, too, are always dependent on the community of the living. Every day, they must transform into people like those on Earth (Bujo, 2003, pp. 117–118). The above discourse elaborates on an African understanding of human personhood in general and its body of knowledge about what it means to be a person. This body of knowledge of human personhood is a shared or

110

Elvis Imafidon and Kenneth Uyi Abudu

collective episteme that thrives in the African community and forms the basis for accepting or rejecting manifestations of human personhood in the community. This brings us to how such epistemic normativity of personhood, its descriptive and normative features, impacts the understanding of people with disability in African cultures. For example, the descriptive component of the human person in African communitarian framework has profound impact on the personhood status of disabled people. Descriptively, the human person in sub-Saharan African communitarian framework is expected to have a body which consists of the physical and non-physical parts such as the head, hands, legs, brain, heart, and other components. Disability as generally construed implies the lack of some bodily or mental features. Within the sub-Saharan African communitarian framework, people with disability are not considered fully human due to such lack of bodily, mental, and non-physical features. Makinde (1984, p. 198) argues that people with disabilities have little, sub-human place in the community of beings. In traditional Yoruba society, people with disabilities are excluded from the actual human community of social relations and confined to the care of the deity, Orisanla, to be taken care of and made part of his domestic and religious staff. Makinde puts it further: Since persons of this kind are banished from their own lineage households, it means that such deformed persons are denied the full opportunities often given to normal people within the narrow limits of the hierarchical system of society. They cannot, for instance, function as bale (heads of households) or as Oba (King). At death they cannot become ancestors because they are not buried inside the lineage households (1984, p. 199). Adegbindin elaborates on the Yoruba understanding of disability along this line as well. According to him, disability in the Yoruba traditional thought is often construed as a phenomenon with a mythological foundation because it is associated with Òrì
à-ńlá or bàtálá, a Yorùbá deity that is revered in Yoruba ontology (2018, p. 77). The mythological foundation of disability in Yoruba thought is that during creation, the Olodumare had charged Òrì
à-ńlá to mould the descriptive components of the human person. The Òrì
à-ńlá, therefore, is the sculptor-divinity who was granted the freedom (by Olodumare) to create whatever he wants; therefore, he can construct men with shapely or malformed features. The hunchback, the cripple, and the albino are thought to be particular markers of his prerogative, either indicating his dissatisfaction with a transgression of some taboos or demonstrating his ability to do as he pleases. The “defective” in this group is known as ni Òrì
à – ‘The votaries of the Òrì
à’’ (Ìdòwú, 1962, pp. 71–72). According to Awólàlú, ‘the Yorùbá claim that the albinos (àfín), the dwarfs (aràrá), the hunchbacks (asuké), the cripples (ar!) and the dumb (odi) are created like that by Òrì
à to make them sacred to him’ (1979, p. 21). It will therefore not be surprising to see that the categories of

Africa and the epistemic normativity of disability

111

disabilities outlined above by Awólàlú would not fit into the descriptive category of personhood in the sub-Saharan African communitarian framework. Put differently, not fitting within the ontology and normativity of a human person results in disability. This understanding of disability has become a basis for the exclusion and marginalisation of persons with disability in African communities. According to Imafidon (2019), when we pay attention to the ontic features of the human person, it suggests the exclusion that persons with disability are facing. The exclusion of disabled individuals as other-than (human) beings because of their (perceived) “loss” of certain of these ontic qualities and why they originated without them demonstrates the relevance of these ontic features for personhood. In sub-Saharan African traditional thought, for example, the process of disabled people coming into being is regarded to be vastly different from that of non-disabled people. In many sub-Saharan African thought systems, disabled people are considered as the product of a curse, anger, or error on the part of divinities, deities, and ancestors as a result of human wrongdoings (Imafidon, 2019, p. 52). More so, in African moral humanism, there is a discriminatory treatment of people with disabilities, and when members of an African community harm, malign, stigmatise, and discriminate them, they do not always feel they are doing something wrong in the same way they would feel if they were hurting a fellow human. Their interaction with a person with disability, cruel as it may be, is not considered the same as an interaction with a fellow human being (Imafidon, 2019, p. 82). Thus, in sub-Saharan African traditions, there is a deeply entrenched episteme understood in the Foucauldian sense as normative and implicit rules governing what constitute legitimate and justified forms of knowledge for a particular group or period. This deeply rooted episteme of personhood in particular provides a basis for understanding the concrete experiences of persons with disability in sub-Saharan African communities. It serves as a hermeneutic framework for understanding the discrimination, marginalisation, and exclusion of persons with disabilities in sub-Saharan African communities. What clearly emerges from the above discourse is that, on the basis of this epistemic normativity of personhood in African cultures, persons with disability are often presented and represented in different sub-Saharan African communities as sub-human or non-human and underserving of the personhood status. The intersectionality of disability in African traditions Intersectionality as used here consists of the critical framework for examining the interconnections and interdependence between social categories and systems (Atewologun, 2020). This is often referred to as structural intersectionality as popularised by Crenshaw (1991). ‘Structural intersectionality aims to render visible phenomenological experiences of people who

112

Elvis Imafidon and Kenneth Uyi Abudu

face multiple forms of oppression without fragmenting those experiences through categorial exclusion, and it conceptualises their ontological anchor in interlocking social structures which are given equal explanatory salience’ (Carastathis, 2014, p. 307). In African cultures, the intersectionality of disability has a multi-layered level, weaving together multiple dimensions of social categories that create and sustain discriminating and oppressing experience of disability. Such multiple dimensions of social categories include categories of beings (e.g., ancestorship), health institutions, and gender. Regarding the status of ancestorship in African traditional thought, people with disability are not qualified to become an ancestor due to their physical deformities. In Igbo thought system, for instance, to be qualified for an ancestor, there are several criteria that must be met. According to Wiredu (1992), death alone is not sufficient to make a person an ancestor. Much depends on how a person lived and how he died. The implication of this statement is that while all humans will surely die, not all humans have the capacity to become an ancestor. To further buttress the argument that there is an intersectionality of disability with ancestorship in African (Igbo) cosmology, Obiakor (2010, p. 41), quoting Enyeribe (2006), provides the criteria for a dead Igbo person to become an ancestor. The individual must have been physically and mentally healthy; he must have lived a life of selfactualisation and self-fulfilment; an exemplary moral life; must have been married with offspring to the third and fourth generation; must have died at old age; and lastly, he must have been given a befitting burial. Evidently, disabled people are certainly not going in fit into at least one or more of the criteria for becoming an ancestor in the Igbo cosmology. In particular, the Igbos believe that a person with physical disability, such as a crippled person, is repaying his or her karmic debt, which they believe is a carryover from a former life’s deed. Any Igbo who had leprosy (ekpenta), a bulging stomach (itoafo), a hernia (ibi), or forms of disability are not considered an ancestor. Any Igbo who died of one of these diseases or with a disability was considered a horrible and humiliating death (ajoonwu) (Ebere, 2019, p. 20). Summarily, there is already a community-defined identity which excludes people with disabilities from the ancestral cult. The same exclusion of people with disabilities from the ancestral cults seen among the Yoruba people. The nature of human personality in Yoruba traditional thought, as examined earlier, suggests that the human person has a body (ara), soul (emi), and destiny (ori). However, the personalities of people with disabilities are often questioned due to their physical conditions. While some scholars have argued that the destiny (ori) determines how far one will go in life, the idea that disabled people are limited due to their physical deformities has been internalised to the extent that Abimbola explains that such deformed persons are denied the full opportunities often given to “normal” people within the narrow limits of the hierarchical system of society. They cannot, for instance, function as Baale (Heads of households) or as Baale (Village or town head) or as Oba (King). At death, they cannot

Africa and the epistemic normativity of disability

113

become ancestors because they are not buried inside the lineage households (Abimbola, 1971). We also find a strong disadvantaging intersection between disability and healthcare in African traditions. Imafidon (2021) does this by arguing that in an African communitarian framework, persons with disability are not given same access to healthcare when compared to non-disabled people. Accordingly, he suggests that persons with disability are treated differently than non-disabled people and are not seen to be entitled to the same level of healthcare and justice possibilities. Disabled people are unlikely to be hospitalised and even less likely to be put on ventilators, if necessary, in the setting of the COVID-19 pandemic. The idea of disability as an expression of supernatural beings’ wrath, displeasure, and wrong exacerbates this uneven treatment, implying that there is often no purposeful effort made to give disabled individuals state-of-the-art or even adequate healthcare services. People with autism or epilepsy, for example, are frequently mistakenly believed to be possessed by demonic powers and subjected to brutal and demeaning rituals and rites (Imafidon, 2021, p. 53). This is worsened by the fact that many healthcare workers in African communities, although trained in Western orthodox medical care, still live by the indigenous African epistemic framework for understanding personhood and this creates a strong bias in attending to persons with disabilities. With specific reference to the intersection of gender and disability, Muromi, while explaining some of the beliefs about albinism in Tanzania, states that: It is believed that … sexual intercourse with a woman or a girl with albinism can cure HIV/AIDS; that the sacrifice of persons with albinism can appease ‘the god of the mountain’ when a volcano starts to erupt; or that pulling out the hair of a person with albinism brings good luck. It has been reported that miners use the bones of persons with albinism as amulets or bury them where they are drilling for gold, and that fishermen weave the hair of persons with albinism into their nets to improve their catches. This range of beliefs and superstitions leads to various forms of attacks against persons with albinism in many communities (2014, p. 323). There is clear indication here that women and girls with albinism are more likely to suffer exclusion and marginalisation by virtue of being people with disabilities. With albinism and other forms of disability, women are more disadvantaged than men in issues of job opportunities, marriage, livelihood, work and pay, access to education, and so on. A participant who took part in an interview has this to say regarding the intersectionality of disability and gender: Even if you [women] do not have a disability you are seen as the lesser, especially in our communities, and, people can take advantage of you. So,

114

Elvis Imafidon and Kenneth Uyi Abudu

when you have a disability, it is more [risky] because they think that they can do something to that person and the person cannot defend themselves and cannot be able to say that this is the person that did this to me (Meer and Combrinck, 2015, p. 4). In a similar vein, Chataika further lays emphasis on the intersectionality of disability and gender as disadvantaging women in Africa by stating that: Disabled women are more exposed to violence and rape than women without disabilities, and less likely to ask the police to intervene, or at least seek legal protection … The popular belief that people with sexually transmitted diseases can be cured if they have sexual relations with a virgin creates a particular risk for girls with disabilities due to the misconception that disabled people are sexually inactive, and therefore virgins (2017, p. 183). Thus, disabled women are more likely to experience abuse, marginalisation, and exclusion when compared to disabled males, leading to marginalisation and exclusion based on the intersectionality of gender and disability. Conclusion: An African humanistic and inclusive approach to disability The discourse so far often leaves little to be desired or explored in an African understanding and epistemology of disability as our analysis suggests that such an understanding has been the basis for harm and exclusion of people with disabilities in African traditions. But in keeping with an endogenous and decolonial approach to CDS, we will highlight in this final section an important concept in African philosophy that one may look to in the quest to promote the wellbeing and inclusion of persons with disabilities, the concept of Ubuntu. While Ubuntu and the quest to build community may be the foundation of marginalisation and exclusion of people with disabilities in African communities due to a narrow conception of community where people who fulfil the ontological and normative requirements of personhood fit into the communal structure (Imafidon, 2021), Ubuntu as a theoretical concept remains a fertile concept to analyse for the promotion of inclusion and wellbeing of people with disabilities. Thus, the concrete realities of Ubuntu for disabled people may evidently be problematic, but the theoretical concept itself remains an important source for fostering inclusion in contemporary African societies if adequately conceptualised and utilised. The central thesis of Ubuntu is, in the Zulu language, umuntungumuntungabantu which translates as, ‘a person is a person through other persons’ (Shutte, 1993, p. 46). According to Louw (2006), who cites Van der Merwe (1996, p. 1), another interpretation of Ubuntu could mean that ‘A human being is a human being through (the otherness of) other human beings’.

Africa and the epistemic normativity of disability

115

Consequently, Ubuntu as a concept essentially reiterates one’s limitation as an independent individual, one’s dependency on others for a meaningful existence, and the appreciation for the diversity of what it means to be human. According to van der Merwe (1996), Ubuntu takes into cognisance, the descriptive and normative components of not only how we should treat others, but how we should become human. This position is further summed up by Tutu (1999, p. 31) as follows: Africans have a thing called ubuntu. It is about the essence of being human, it is part of the gift that Africa will give the world. It embraces hospitality, caring about others, being willing to go the extra mile for the sake of another. We believe that a person is a person through other persons, that my humanity is caught up, bound up, inextricably, with yours. When I dehumanise you, I inexorably dehumanise myself. The solitary human being is a contradiction in terms. Therefore, you seek to work for the common good because your humanity comes into its own in community, in belonging. The implication of this is that if ‘a person is a person through other persons’ (Tutu, 1999), it logically follows that no human person is really complete or at least can be completely human alone or on his/her own. It is the acknowledgement of the disability of each independent individual, necessitating the need to depend on others to be able to be complete. No human is complete alone as he is expected to depend on other people to make his existence meaningful. In a sense, therefore, the idea of disability as a category for exclusion is flawed since we all have some form of manifest or latent disability. A person could look physically and mentally able, but needs others to build his or her values and meaning. In this sense, disability is shared and inclusive, as it is not something that a few people have; we keep depending on others and others keep depending on us. The importance of Ubuntu in the inclusion of people with disabilities in Africa will further be appreciated if we consider the foundation of African moral theory as expounded by Metz (2007), arguing that the foundation of African ethics is that ‘an action is right just insofar as it produces harmony and reduces discord; an act is wrong to the extent that it fails to develop community’ (p. 334). In other words, ‘what is right is what connects people together; what separates people is wrong’ (Metz, 2007, p. 334). Evidently, Metz is expressing what the core of Ubuntu is in building community; any action that does not promote harmony, friendliness, and social order should be discouraged and condemned at all cost. And since community is at the heart of Ubuntu, the need to theoretically expand the understanding of community beyond its concrete reality cannot be overemphasised. According to Imafidon (2021), there are thus two senses of community in this understanding of Ubuntu, the narrow and broad senses of the community. To him, the narrow sense of the community, the factual concrete and

116

Elvis Imafidon and Kenneth Uyi Abudu

physical one, means that an African community is defined in a condensed, limited sense as a group of people who are inherently linked and bound together by shared values, culture, religion, beliefs, language, heritage, ethnicity, and philosophy. This restricted definition of community depicts a community as a confined entity, wary of difference and anything that deviates from the specific forms of being it acknowledges (Imafidon, 2021, p. 55). The problem with this narrow sense of the community is that it breeds ethnocentrism, tribalism, ethnicity and xenophobia, and exclusion (Imafidon, 2021, p. 55). The broad, normative sense of community as what ought to be pursued promotes the inclusion and harmony needed to sustain social order. He writes: A broad sense of community, on the other hand, involves a more open and receptive form of communion among people, a communion that is grounded in general, flexible, and tolerant principles of humanity and solidarity that accommodate differences rather than based on very specific and rigid forms, features, or qualities of being. In this broad sense, an African community will promote communal living, sense of belonging, solidarity, and togetherness, through the recognition of other possibilities and understandings of the world different from its own. This broad sense does not require that a community reject or completely abandon its own collective understanding and theories of being and existence. Rather, this broad sense requires recognition of the limits of one’s own perspectives, the willingness to develop other perspectives, and acknowledgment of the different perspectives of other people and other communities. In this way, a community of selves becomes less hostile to, more tolerant of, and more open to, differences in general (2021, p. 55). It is within the broad sense of community that Ubuntu is really able to thrive in its fullness as a robust philosophical concept of interdependence and solidarity, discouraging the marginalisation and exclusion of people with disabilities. Also, Ubuntu as a humanist and inclusive framework for disability in African communitarian framework will, according to Berghs, ensure that the considerations for disability will be done at multifarious levels. The essence of Ubuntu, therefore, is that individually, socially, by the state, or structurally, social duties of ethical behaviours are enabled or disabled. Ubuntu questions why a community, institution, or state is failing in its humane responsibilities to sustain respect for human diversity, who is filling the vacuum, and why, as well as what can be done to reform such discourses, institutions, and practices (2017, p. 6). As a vocation, the essence of Ubuntu is common good, caring, and shared humanity; by this, it suggests that disability is a kind of difference which implies that humans are creatively unique. This uniqueness refers mainly to the variance found in the social, biological, and physiological make-up of the human person. In other words, while some humans might be impaired, it does not imply that they should be

Africa and the epistemic normativity of disability

117

treated as less humans; in line with the concept of Ubuntu, we are all in some way impaired, limited, and unable. Perhaps Ubuntu is a key concept for stakeholders in the disability discourse to explore in the pursuit of wellbeing for people with disabilities. References Abimbola, W. (1971) ‘The Yoruba concept of human personality’, La Notion de PersonneenAfrique Noire. ColloguesIntemationaux de Centre National de la Recherche Scientifique, 544, pp. 73–89. Adegbindin, O. (2018) ‘Disability and human diversity: A re-interpretation of enioosa philosophy in Yoruba belief’, Yoruba Studies Review, 3(1), pp. 67–96. Alli, P. O. (2011) Esan cosmology and its effect on the social behaviour of people. Lagos: Decocraft Communications. Appiah, K. A. (2004) ‘Akan and Euro-American concepts of the person’, in L. M. Brown (ed.) African philosophy: New and traditional perspectives. Oxford: Oxford University Press, pp. 21–34. Atewologun, D. (2020) ‘Intersectionality: Theory and practice’, in R. J. Aldag (ed.) Oxford research encyclopaedias: Business and management. Oxford: Oxford University Press. Awólàlú, J.
. (1979) Yorùbá beliefs and sacrificial rites. London: Longman. Berghs, M. (2017) ‘Practices and discourses of Ubuntu: Implications for an African model of disability?’, African Journal of Disability, 6, pp. 1–8. Bujo, B. (2003) Foundations of an African ethic: Beyond the universal claims of Western morality. Kenya: Paulines Publications Africa. Carastathis, A. (2014) ‘The concept of intersectionality in feminist theory’, Philosophy Compass, 9(5), pp. 304–314. Chataika, T. (2017) ‘Disabled women, urbanization, and sustainable development in Africa’, in A. Lacey (ed.) Women, urbanization and sustainability: Practices of survival, adaptation, and resistance. London: Palgrave Macmillan, pp. 179–198. Crenshaw, K. W. (1991) ‘Mapping the margins: Intersectionality, identity politics, and violence against women of color’, Stanford Law Review, 43(6), pp. 1241–1299. Ebere, E. O. (2019) ‘Igbo ancestor-ship and Christian sainthood: The bigotry’, Global Journal of Arts, Humanities and the Social Sciences, 7(8), pp. 17–23. Enyeribe, K. (2006) The question of afterlife in Igbo traditional thought. Enugu: Abic Books. Eze, M. O. (2008) ‘What is African communitarianism? Against consensus as a regulative ideal’, South African Journal of Philosophy, 27(4), pp. 386–399. Gbadegesin, S. (1991) African philosophy: Traditional Yoruba philosophy and contemporary realities. New York: Peter Lang. Gbadegesin, S. (1998) ‘Eniyan: The Yoruba concept of a person’, in P. H. Coetzeeand, A. J. P. Roux (eds.) Philosophy from Africa: A text with readings. London: Routledge, pp. 149–168. Grech, S. (2011) ’Recolonising debates or perpetuated coloniality? Decentring the spaces of disability, development and community in the global South’, International Journal of Inclusive Education, 15, 87–100. 10.1080/13603116. 2010.496198. Gyekye, K. (1984) ‘The Akan concept of a person’, in R. A. Wright (ed.) African philosophy: An introduction. Lanham: University Press of America. Gyekye, K. (1992) ‘Person and community in African thought’, in K. Wireduand, K. Gyekye (eds.) Person and community: Ghanian philosophical studies. 1st edn. Washington: Council for Research in Values and Philosophy.

118

Elvis Imafidon and Kenneth Uyi Abudu

Ìdòwú, E. B. (1962) Olódùmarè: God in Yorùbá belief. London: Longman. Ikuenobe, P. (2006) Philosophical perspective on communalism and morality in African traditions. New York: Lexington Books. Imafidon, E. (2012) ‘The concept of person in an African culture and its implication for social order’, Lumina, 23(2), pp. 1–19. Imafidon, E. (2014) Morality in Esan tradition and the concept of discourse ethics. Ph.D. thesis. University of Ibadan. Imafidon, E. (2019) African philosophy and the otherness of albinism: White skin, black race. Oxfordshire: Routledge. Imafidon, E. (2021) ‘African communitarian philosophy of personhood and disability: The asymmetry of value and power in access to healthcare’, International Journal of Critical Diversity Studies, 4(1), pp. 46–57. Kasser, S., and Lytle, R. (2005) Inclusive physical activity. Champaign: Human Kinetics. Louw, D. J. (2006) ‘The African concept of Ubuntu and Restorative Justice’, in D. Sullivan, L. Tift (eds.) Handbook of restorative justice: A global perspective. London: Routledge, pp. 161–174. Makinde, M. A. (1984) ‘An African concept of human personality: The Yoruba example’, Ultimate Reality and Meaning, 7(3), pp. 189–200. Mbiti, J. (1969) African religions and philosophy. London: Heinemann. McMaster, M. J., and Singh, H. (1999) ‘Natural history of congenital kyphosis and kyphoscoliosis: A study of one hundred and twelve patients’, The Journal of Bone and Joint Surgery, 81, pp. 136–1383. Meekosha, H., and Shuttleworth, R. (2009) ‘What is so ‘critical’ about critical disability studies?’, Australian Journal of Human Rights, 15(1), pp. 47–45. Meer, T., and Combrinck, H. (2015) ‘Invisible intersections: Understanding the complex stigmatisation of women with intellectual disabilities in their vulnerability to gender-based violence’, Agenda, 29(2), pp. 1–10. Menkiti, I. (1984) ‘Person and community in African traditional thought’, in R. Wright (ed.) African philosophy: An introduction. Lanham: University Press of America. Metz, T. (2007) ‘Toward an African moral theory’, Journal of Political Philosophy, 15(3), pp. 321–341. Muromi, S. (2014) ‘Violence against persons with albinism and older women: Tackling witchcraft accusation in Tanzania’, International Journal of Education and Research, 2(6), pp. 323–338. Ndubuisi, F. N. (2004) ‘A conception of man in an African communalism’, in J. I. Unah (ed.) Metaphysics, phenomenology and African philosophy. Lagos: FADEC Publishers. Obiakor, E. E. (2010) Reincarnation in Igbo belief system: The paradox. Ph.D.Thesis. Nnamdi Azikiwe University. Available at: https://naudigitallibrary. wordpress.com/2012/11/26/reincarnation-in-igbo-belief-system-the-paradox/ Oladipo, O. (1992) ‘The Yoruba concept of a person: An Analytico-philosophical study’, International Studies in Philosophy, 34(3), pp. 15–24. Olkin, R. (1999) What psychotherapists should know about disability. New York: Guilford Press. Onah, G. I. (2002) ‘The universal and the particular in Wiredu’s philosophy of human nature’, in O. Oladipo (ed.) The third way in African philosophy: Essays in honour of Kwasi Wiredu. Ibadan: Hope Publications. Oyeshile, O. A. (2006) ‘The physical and non-physical in Yoruba concept of the person’, Philosophia de Sellentt, 35(2), pp. 153–165. Ramose, M. B. (1999) African philosophy through Ubuntu. Harare: Mond Books. Rettova, A. (2020) ‘Cognates of Ubuntu: Humanity/personhood in the Swahili philosophy of Utu’, Decolonial Subversions, 1, pp. 31–60.

Africa and the epistemic normativity of disability

119

Schalk, S. (2017) ‘Critical disability studies as methodology’, Lateral: Journal of the Cultural Studies Association, 6(1), pp. 1–4. Shutte, A. (1993) Philosophy for Africa. Rondebosch: UCT Press. Shutte, A. (2001) Ubuntu: An ethic for a new South Africa. Pietermaritzburg: Cluster Publications. Thomas, D., and Woods, H. (2003) Working with people with learning disabilities. London: Jessica Kingsley Publishers. Tutu, D. (1999) No future without forgiveness. New York: Random House. Van der Merwe, W. L. (1996) ‘Philosophy and the multi-cultural context of (post) apartheid South Africa’, Ethical Perspectives, 3(2), pp. 1–15. Available at: 10.2143/EP.3.2.563038 Wiredu, K. (1992). ’Death and the Afterlife in African Culture,’ in Kwasi Wiredu and Kwame Gyekye (eds.), Person and Community: Ghanaian Philosophical Studies 1. Washington, DC: The Centre for Research in Values and Philosophy, pp. 137–152.

7

Impossible working lives and disabled Bodyminds during racialised capitalism Perspectives from Germany and the United Kingdom Robel Afeworki Abay and Maria Berghs

Introduction The COVID-19 pandemic has brought in stark relief two correlated needs of neoliberal capitalism, the need for the economy to function and the need for able-bodyminded1 workers to ensure economic production and profit. International legislation to reinforce the inclusion and rights of people with disabilities globally against such trends was pivotal pre-pandemic. The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (UN, 2006, 1) states in Article 27 that employment is a right for disabled people and the eighth 2030 UN Sustainable Development Goal (SDG) (UN, 2015, n.p.) concerns, ‘Full and productive employment and decent work for all’ but they have had little legislative ‘teeth’ during the COVID-19 pandemic. The pandemic has thus illustrated the precarious nature of employment for disabled people, as they had to give up work to shield or self-isolate, were refused flexible working conditions and often were required to work in person or needed to do frontline or essential work for survival (Emerson et al., 2021; Maroto and Pettinicchio, 2020; Tidball et al., 2020). A feature of the pandemic was also the symbolic importance of the Black Lives Matter (BLM) movement which gained new impetus with the murder of the African-American George Floyd on 25 May 2020. His death at the hands of a white police officer seemed to encapsulate many of the realities of a racialised pandemic and necropolitical order (Mbembe, 2000), in how ‘Black’ Bodyminds did not matter (Çetinkaya, Douglass and Davis, 2020) and/or could be killed without impunity by the state. It has thus also emphasised how critical an intersectional, anti-racist and decolonial perspective has become, as BIPoC were disproportionately affected by ill-health at work (McClure et al., 2020) as well as loss of employment during the pandemic (Hu, 2020; Jashinsky et al., 2021). Despite the importance of understanding the structural and historical nature of inequalities on employment, as well as personalised risk factors of frontline workers, individual biological and racialised explanations dominated. A lacuna also formed around institutionalised settings, such as care homes, and DOI: 10.4324/9781003280422-8

Impossible working lives and disabled Bodyminds during capitalism

121

health industry in general, neglecting their profits from a racialised capitalism. Racialised capitalism has also tended to be viewed from an anthropomorphic perspective with the white male Bodyminds as ‘central’ rather than that of the impact of humankind and racialised capitalism on effecting climate change or the era of the Anthropocene (Tsing, 2015). Instead, ableism has become a feature of discourses on disability and COVID-19 with the norm in policy being a white unencumbered heterosexual middle-class able-bodyminded man from the Global North (Campbell, 2009). Language around COVID-19 also changed with explanations around disability and inequalities (e.g., in access to and ability to work from home or isolate), erased. People with ‘pre-existing conditions’ or ‘underlying conditions’ were almost framed as collateral damage, at greater risk of catching the virus and also dying from COVID-19 (Abrams and Abbott, 2020; Lund et al., 2020). Lives were viewed in terms of productivity and ability for survival which excluded disabled BIPoC and ignored the role of migration and the history of colonialism from present realities. In this chapter, we examine how employment and working lives are made impossible for disabled BIPoC by examining two examples from the Global North. We reveal how both employment and work become inaccessible due to a racialised capitalism (Fraser, 2016; Virdee, 2019) in Germany and the United Kingdom in differing ways, as race still has salience. In the UK, we note how ableism becomes foundational to understand sexism, racism and ableism in employment and lack of possibility of disability lives. However, ableism also reveals tensions in intersectional categories and analyses that are still predicated on racialised capitalist structuring principles that hold embodied differences as central. Ableism and racism have devastating impacts on labour market participation of disabled BIPoC within racialised capitalism (Afeworki Abay, 2022). Therefore, this chapter critically examines the continuum of structural violence of ableism and economic precarity within the mainstream labour market in Germany and the United Kingdom and how they are embedded in the dominant postcolonial system of racialised capitalism (Dyson et al., 2021; Edwards, 2021; Hutson, 2007, 2011). Rethinking intersectionality in light of decoloniality: Decolonising intersectionality? The COVID-19 pandemic has exposed how capitalism is racialised, or how central race is to understanding the ways in which the neoliberal economy functions. The legacy of colonialism and imperialism still lives in the inequalities that BIPoC experience and in the creation of disabled states and people. Race functioned as a construction to delimit access to paid employment, land, justice, legal status and freedom in the colonial encounter where a ‘Black’ subaltern class was fashioned (Virdee, 2019). In the present, we see the same racialised capitalism in how ‘Black’ Bodyminds in the Global North and from the Global South are seen as essential to keep the global

122

Robel Afeworki Abay and Maria Berghs

economy running but now how that same economy also leads to mass ecological destruction (Dyson et al., 2021; Edwards, 2021). Furthermore, in the global North and South, there is a correlation between poverty and disability, as well as a cyclical relationship between chronic deprivation, gaining of impairment or ill-health through employment and the likelihood of experiencing entrenched inequalities (Afeworki Abay and Soldatic, 2024; Berghs et al., 2016, 2019). There are also further connections between type of impairment, age, gender, race, sexuality and socio-economic class in how disparities are experienced and exposures to violence, marginalisation and discriminations such as disablism or ableism. An intersectional perspective (Carbado et al., 2013; Crenshaw, 1989) is thus critical to understand the way in which discriminations and power structures occur. Rooted in Black feminism, intersectionality highlights the subtle ways in which experiences of marginalisation can lead to social inequality and discrimination, particularly for oppressed groups based on socially constructed categories (e.g., race, gender, disability, class, sexuality, etc.). Crenshaw (1989, p. 139) criticises, ‘the tendency to treat race and gender as mutually exclusive categories of experience and analysis’ instead arguing how they have to be viewed together as discriminations ‘intersect’ in people’s working lives. The concept of intersectionality provides an essential framework to understand the complex and multidimensional experiences of discrimination and oppression by considering multiple social categories of identity, as the intersection of socially constructed categories like disability, race and gender shapes structure, politics and representation (Crenshaw, 1991). Moreover, disability, gender and race are relevant social categories in the critical examination of intersectional inequality: the persistent forms of disability and gender pay gap, as well as ethnic disparities in labour market which are also correlated to type of employment and underemployment (Berghs and Dyson, 2020). Therefore, intersectionality is a powerful tool to reveal why disabled people in general, and disabled BIPoC in particular, face additional discriminations in the labour market and reveal what types of discriminations these are (Afeworki Abay, 2022; Hutson, 2007, 2011; Pieper, 2016; Pieper and Haji Mohammadi, 2014). Berghs and Dyson (2020) have noted that with disabled BIPoC, certain forms of discriminations can gain more prominence over disablism, such as racism. Yet, as the workplace has become more diverse in the last three decades, more issues of intersectional discriminations and privileges can arise together. Intersectional interrogations can be useful tools to highlight the intersecting and mutually constitutive relations among social identities and the way in which identities are formed. Understanding intersectionality as a critical feminist concept to unmask the structural discrimination can further create understandings around shared experiences of discrimination, marginalisation and privilege. This in turn can lead to mutual acknowledgement of how structures of oppression are interrelated and, therefore, how social struggles are linked and solutions can be sought (Carbado and Gulati, 2013).

Impossible working lives and disabled Bodyminds during capitalism

123

Intersectionality engages with a range of issues, social identities, power dynamics, legal and political systems, as well as discursive structures worldwide. It provides critical tools for practitioners, policy makers and scholars to advance inclusive structures in labour market participation. Examining the lived experiences of intersectionality among disabled BIPoC in the labour market in capitalist systems, goes hand in hand with critical analysis of racism and ableism, as discursive and institutionalised practices of difference, discrimination and dehumanisation (Afeworki Abay, 2022). While embracing intersectionality as a critical framework for analysing interlocking forms of social identities and oppressions, this can obscure the histories and continuity of colonial violence, not only in physical and psychological features but also in epistemic violence (Afeworki Abay and Wechuli, 2022). Accordingly, the current tendency of universalising claims to the concept of intersectionality should be critically examined in its entanglements to postcolonial structures. Decolonial intersectionality (Kurtiş and Adams, 2016; Salem, 2014) can be particularly useful in reflecting on how the social constructions of group membership are enabled and postcolonial power relations form from a critical perspective of dominance. This places the multidimensional lives of the affected communities at the centre of intersectional analysis of social inequality allowing more realism in analysis. Following Kurtiş and Adams’ (2016, p. 47) conception of justice, decolonial intersectionality is understood as a theoretical framework for analysing the coloniality of the reception and further development of intersectionality research: “To address concerns about coloniality in mainstream appropriations of intersectionality, perspectives of transnational feminism require what Salem (2014) refers to as decolonial intersectionality. Rather than contributing to the ongoing domination of the marginalised many for the benefit of a privileged few, a decolonial intersectionality draws upon silenced perspectives of people in Majority-World spaces to propose sustainable ways of being consistent with global social justice.” Based on a postcolonial critique of the concept of intersectionality, and its contemporary developments in hegemonic discourses, many transnational feminists call the current status of the intersectionality concept a ‘whitening of intersectionality’ (Bilge, 2013, p. 405) or ‘a triple blind intersectionality’ (Carbado, 2013, p. 818). Therefore, Kurtiş and Adams (2016, p. 47) argue for decolonialisation of the very concept of intersectionality, as, ‘decolonial theorists use the term coloniality to emphasise the extent to which everyday realities of the modern global order are the harmful legacy of the racialised colonial violence that enabled Euro-American global domination’. According to the authors, this involves two central strategies of decolonisation: “The first decolonising strategy is to normalise patterns of experience in diverse Majority-World settings that hegemonic discourses portray as

124

Robel Afeworki Abay and Maria Berghs

abnormal or suboptimal. Although mainstream perspectives of feminism often portray women in Majority-World settings as oppressed junior sisters in need of education or rescue, the normalising strategy of a cultural psychology analysis valorises the experiences of women in Majority-World settings as a privileged source of insight about gender oppression. The second decolonising strategy is to denaturalise patterns that hegemonic discourse considers as standards of optimal functioning. Rather than portray Western feminist understandings as the vanguard of gender liberation, the denaturalising strategy of a cultural psychology analysis draws upon the epistemological perspectives of women in Majority-World settings to illuminate manifestations of privilege (e.g., based on race, social class, sexuality) that undermine its liberatory potential.” (Kurtiş and Adams, 2016, pp. 47–48). As explained in the above quote, the concept of decolonial intersectionality can open up the possibility of examining relations of domination around genders, racism and ableism, and the associated discursive continuities and institutionalised practices of social exclusion and marginalisation. However, we argue that it is still anthropomorphic in how it ‘embodies’ the very social sorting categories within a racialised capitalism (Fraser, 2016; Virdee, 2019). It means taking for granted that the sorting and starting intersectional principles begin with a human subject and that can be sorted into categories (such as disabled, Black etc.) which also fixes and ratifies epistemically in time and space without analysis of the historical origins of such structuring principles. Virdee (2019) argues that this means that one is blind to the historical creation and present injustices of ‘racism’ in the very process of capitalism, a capitalism that can only function due to the exploitation of such categories of difference. We illustrate how a decolonial perspective can help us in reframing and rethinking what it means to decolonise intersectionality as it becomes correlated to employment in Germany and the United Kingdom in relation to disabled BIPoC and communities. These are both countries with colonial and postcolonial histories that encompass significant migrations from the global South to the global North. These migration flows and patterns have a colonial and postcolonial history but they have also typically been legitimated in function of local labour markets and their needs for cheap labour; for example, the Caribbean Windrush generation in the United Kingdom from the late 1940s onwards and the ‘Gastarbeiter’ (guest worker) in Germany from the 1950s onwards. Migration has also been affected by humanitarianism and the influx of refugees from conflict affected states, populations who in neoliberal capitalism have to generally assimilate to the dominant culture to ensure entry into the labour market. The present-day colonial inequalities affecting these populations or how disability is to be consolidated and considered have received scant attention.

Impossible working lives and disabled Bodyminds during capitalism

125

Germany

As stated in the introduction, during the last decade, increasing emphasis has been placed to reinforce the social and labour market inclusion of people with disabilities globally, for instance, due to the normative claim of Article 27 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Yet, there have been only a few progressive changes noted on the inclusion of this population group in the German mainstream labour market over the last ten years (for an overview, see Biermann, 2015; Morris, 2019). This is despite a statutory 5% quota in the German Social Code which applies to workplaces with more than twenty employees and the 2006 General Equal Treatment Act which protects workers with disabilities from workplace and employment discrimination. However, with a quarter of the German population having a migration history and recent humanitarian history of openness towards Syrian, Afghan and Ukrainian refugees, intersectionality and inclusion of multiple discriminations, alongside disablism, such as racism and sexism, have not been adequately considered. Due to existing intersectional inequalities, fundamentally vulnerable groups such as BIPoC with disabilities have precarious access to the mainstream labour market (Pieper, 2016; Pieper and Haji Mohammadi, 2014), especially in times of economic austerity and rising living costs. The dynamics of capitalist power structures enforced by various exploitative and discriminatory European migration regimes, with all its consequences in structural inequalities for disabled BIPoC, have often been left unconsidered. For instance, refugees have many language barriers, but most importantly legal barriers to entry to the mainstream labour market due the extremely long process of examining the asylum applications. This can entail that refugees and asylum seekers become exploited in the illegal labour markets or seek jobs in enclaves and ethni ghettos. When it comes to disabled refugees, the situation is even worse, as the mainstream labour market is not yet open for all as claimed by the government, who have not completely implemented Article 27 of the CRPD. Intersectionality (Carbado and Gulati, 2013; Crenshaw, 1989, 1991) seems to be a promising concept to critically examine the main characteristics and the complexity of structural discrimination against disabled BIPoC who face multiple dimensions of inequality in accessing the mainstream labour market (Afeworki Abay, 2022; Berghs and Dyson, 2020). Therefore, postcolonial informed intersectional understandings of inequality expose the multiple dynamics that impact upon constructing racialised and disabled identities that are associated with ethnic and racial discrimination within the dominant global capitalist system of exploitation. Decolonial intersectionality (Kurtiş and Adams, 2016; Salem, 2014), in particular, can be enormously fruitful to address overlapping forms of oppression that are embedded in institutional racism and ableism. Though the intersection of disability and migration has become an issue in political and academic discourse (Amirpur, 2016; Korntheuer, Afeworki

126

Robel Afeworki Abay and Maria Berghs

Abay and Westphal, 2021; Wansing and Westphal, 2014), intersectional inequities and disparities of disabled BIPoC in labour market participation are generally under-theorised in Germany (Afeworki Abay, 2022). In particular, women from BIPoC communities are among society’s most marginalised and vulnerable groups, due to interlocking forms of social disadvantage embedded in structural ableism, sexism and racism within the heteropatriarchal structures of the dominant society (Köbsell and Pfahl, 2015). These structures still have, as a norm, an unencumbered white male Bodyminds that has no need for caring duties nor intergenerational responsibilities. Intersectionality takes into account the complexities of socially constructed categories like disability, gender and race as interwoven and mutually constituting, but not as additive factors of discrimination (Amirpur, 2016; Carbado and Gulati, 2013). Moreover, in its critical interrogations, an intersectional approach can therefore be a powerful tool to overcome essentialising views of identity, as social inequality does not per se increase with each additional stigmatised identity and other concepts like type or impairment or literacy might have salience too. Therefore, the question is how the different aspects of power structures in racialised capitalist systems manifest in the existing structures of social inequality of disabled BIPoC in Germany. Crucially, hegemonic discourses of social inequality have often been analysed within a single-story framework of the responsibilisation strategies of underachievement in employment (Afeworki Abay, 2022). Likewise, precarious employment outcomes and intersectional discrimination in the mainstream labour market have barely been associated with ethnic and racial discrimination, as well as gender discrimination and ableist structures within the capitalist system (Blume, 2017). There is still a considerable lack of empirical knowledge on decolonial frameworks in the context of social inequality within the German context that draw on the intersectional relationship between disability, forced migration and colonialism (Afeworki Abay and Wechuli, 2022). BIPoC subaltern voices and lived experiences have been silenced in the media and political discourses during the pandemic, in favour of discourses around the necessity of the labour market and ensuring access for German able-bodyminded workers. Therefore, it can be argued that, to understand inequalities in neoliberal workplace practices, we need to consider and acknowledge subaltern knowledge as collective strategies of resistance. Understanding subaltern knowledge as resistance to racialised capitalism was one of the main findings of a participatory PhD project with disabled BIPoC in Germany (Afeworki Abay, 2023). This PhD was based on the research question: is the intersection of migration and disability the legitimate factor accounting for disparities in labour market outcomes of disabled BIPoC? Although educational disparities of disabled people have become an issue in German political and academic discourses in recent years, there is still considerable lack of empirical evidence on the complex intersectional relationship between disability and migration in contemporary education

Impossible working lives and disabled Bodyminds during capitalism

127

and mainstream labour markets. Therefore, decolonial intersectionality (Kurtiş and Adams, 2016; Salem, 2014) can provide a comprehensive, and critical framework for analysing the multiple dimensions of disparities that disabled BIPoC face in accessing the mainstream labour market in Germany. This also highlights the need to grasp educational attainment and labour market outcomes as a measure that varies between individuals, that is associated with ethnic and racial discrimination but also due to heteronormative, ableist structures within racialised capitalism. Modern capitalist societies are characterised by a relational and conflictridden structures that are embedded in heteropatriarchal power relations. These existing structural barriers that legitimise power structures within the dominant society show how social categories like gender, race, disability, migration, so on, are significant in understanding systems of power and dominance. Yet, despite the multiple similarities in terms of structures of power and discrimination, racism and ableism have hardly been considered together in German academic discourse and research (for exceptions see, Hutson, 2011; Pieper, 2016; Pieper and Haji Mohammadi, 2014). Therefore, implementation of decolonial intersectionality can be a significant tool to understand the complex legacy of colonialism and to empower voices of disabled BIPoC who have been mostly silenced within, for instance, hegemonic Eurocentric discourses (Köbsell, 2019). Moreover, in its critical implementation, this theoretical approach would prove to be enormously fruitful to address overlapping forms of oppression that are embedded in institutional racism, ableism, sexism and other forms of social injustice (Afeworki Abay, 2022). Findings based on an analysis of interviews of a PhD project (Afeworki Abay, 2023), reveal it is undeniable that education has a crucial influence on successful labour market participation. Surprisingly, it seems as if these subaltern experiences, voices and injustices have been silenced in the media and political discourses, maybe because solutions would require not only political but also practical changes to society and labour market organisation. Therefore, it can be argued that, to understand inequalities in workplace practices in racialised capitalism, we need to consider and acknowledge subaltern knowledge and experience as collective strategies of resistance: bottom-up strategies and resources of disabled BIPoC in dealing with heteropatriarchal, racist and ableist structures of racialised capitalism. United Kingdom

This section reports on an empirical study that took place in England in 2018–2020 before the pandemic occurred. The project worked with people with an inherited genetic condition, called sickle cell, and two of their voluntary organisations, the Sickle Cell Society and OSCAR Sandwell as partners. It involved undertaking forty-seven semi-structured interviews and two focus group discussions. The study entailed trying to understand

128

Robel Afeworki Abay and Maria Berghs

barriers and enablers to employment for people who had sickle cell disorders (SCD). In SCD, the red blood cells form a sickle-like shape which can block the blood flow in the body causing episodes of pain called crises. SCD is the overall name to describe these inherited blood conditions that affect millions globally. SCD has now become one of the main inherited genetic conditions in the United Kingdom, affecting over 15,000 people. While SCD affects men and women of African, African-Caribbean, Middle-Eastern, Indian and Southern European descent, in England it occurs mainly in British people of African and African-Caribbean origin (Dyson, 2019). There is a strong colonial history to the spread of SCD to the Americas and Europe, and this furthermore becomes correlated to globalisation of the labour market and hyper-diverse migration in the present. SCD is further complicated in that it is a condition with mild and severe expressions. In some people, it can be a mild episodic or chronic condition, while in others, it can lead to disablement, and in some, it is acute and lifethreatening. SCD may also be understood as an invisible disability because the signs and symptoms, such as fatigue and chronic pain, can remain hidden. Furthermore, the symptoms of the condition become correlated to environmental factors such as extremes in temperature, lack of hydration and physical or emotional stress. As such, workplace adjustments, for example, to be able to drink water and have regular toilet breaks to be able to do a job and remain in good health, are critical. Under the 2010 Equality Act, employers in the UK are tasked with making reasonable workplace adjustments for disabled employees. This is supposed to ensure that they are not disadvantaged in the workplace due to their disability and they have the same opportunities as an able-bodyminded worker to do their job well. The vast majority of people with SCD are also from minority ethnic backgrounds and the issues that they face in employment also become correlated to multiple forms of discrimination, preventing such accommodations or making it difficult to request them. A further complication is that people with SCD do not view themselves as ‘disabled’ or as a ‘person with disability’ preferring to use medical terminology, for example, ‘person with a genetically inherited condition’. Most of the time, they can pass as nondisabled and thus it may seem like other features of identity such as gender or race may be more salient to workplace adjustments. However, a focus on discrimination or on adjustments also restricts analysis to barriers, for instance, facing disabled people in the workplace, without examining the structural norms that make up the workplace itself or even of racialised capitalism (Edwards, 2021; Fraser, 2016). In the UK, BIPoC experiences of employment have largely been invisible in disability studies, although they are included in management and organisational studies, again further negating both injustices such as racism and the historical-materialist analysis of inequalities (Berghs and Dyson, 2020). Intersectional perspectives that focus on categories of identity with regards to employment are important but they can neglect the structural factors and can obscure racialised capitalism, a history of colonial inequalities,

Impossible working lives and disabled Bodyminds during capitalism

129

as well as other forms of work that disabled people have to engage with that are not employment related (Dyson et al., 2021). While disablism is always seen as a main category of intersectionality, we wanted to understand the very categories of intersectionality itself and add ableism to interrogate. Disablism is often contrasted with ableism and according to Campbell (2020, pp. 204–205), ableism is typified by a: … system of causal relations about the order of life that produces processes and systems of entitlement and exclusion. This causality fosters conditions of microaggression, internalised ableism and, in their jostling, notions of (un)encumbrance. A system of dividing practices, ableism institutes the reification and classification of populations. Ableist systems involve the differentiation, ranking, negation, notification and prioritisation of sentient life. Another way to understand the above is that disablism may be understood as disability discrimination, specifically against disabled people and their interests. By contrast, ableism implicitly discriminates in favour of ablebodied people. An attention to ableism allows us to redefine the categories of intersectionality to understand impact of racial capitalism and environmental justice (Jampel, 2018). This is why, even if reasonable adjustments are made in the workplace, people feel as if they are ableist and have the potential to discriminate. Despite public discourses and practices of employers that proclaimed inclusion and respect for diversity, we found that people in employment, especially with minority ethnic identities, were also affected by the diffusion of a hostile environment of racism, deliberately fostered around immigration and nationality laws. Hence, there were implicit pressures favouring being white, English and male, as well as to be able-bodyminded (Berghs et al., 2021). In times of austerity since 2008–2009, cuts to the welfare state, Brexit and xenophobic nativism, an important work tactic was not to draw attention to oneself. As such, ableism was also affected by other societal and economic norms in terms of expected employable ‘English’ white male able-bodyminded worker subjectivities. Thus, while we found practical reasonable adjustments might be made by an understanding line manager who would accede to getting their employees, for example, a portable heater or access to a parking bay, most participants related fears about drawing such attention to themselves, appearing to be undeserving recipients of perks (of reasonable adjustments they had a right to) or being seen as favoured economically or by management in the workplace. Their concern was not just about their invisible disability being made visible to co-workers, but also as identifying themselves as differing from the norm of the workplace itself, which was an ‘unencumbered’ Bodyminds (Campbell, 2009, 2020). While ableism has at its core the idea of an unencumbered Bodyminds, being encumbered is the norm that is applicable to everyone along the life course,

130

Robel Afeworki Abay and Maria Berghs

such as in pregnancy, during physical or mental ill-health, through intergeneration caring commitments or due to old age. We found that people with SCD engaged in a lot of work to ensure that they were healthy, engaged in intergenerational caring and were involved in transnational commitments, voluntary work and kinship responsibilities for others. However, it was employment that was making it impossible to ensure these commitments of kinship and caring for the self. An intersectional analysis (Crenshaw, 1989) revealed how ableism prevented those relationships and how it became expressed through people’s experiences of the workplace. Ableism was a kind of embodied social sorting (through processes such as differentiation), foregrounding ableism, sexism and racism in employment. It was not enough to be a good worker; you also had to ‘fit’ in at work or have the right ‘fit’ for the workplace setting. The main finding of our work on SCD and employment was the importance of relational thinking: we cannot think with people as isolated or atomised beings who then interact (Berghs and Dyson, 2020; Dyson et al., 2021). People are affected and co-constituted through physical, social, historical and environmental relations: any relationship (e.g., parent-child) produces emergent effects not reducible to each individual; relationships and the environment transform each individual and also impairment, chronic conditions and experiences of disability. We also noted how this relationship was also predicated on embodiment within a wider environment which racial capitalism was also destroying (Tsing, 2015). As such, the founding principles of an intersectionality approach might have to change to accommodate other aspects of identity that people find important or how they define themselves (see Massumi, 2015) and give expression to subaltern understandings, inclusive of changing conceptions of embodiment that encompass more than just capitalist exchanges. In this way, by understanding constitutive identities anew, as well as experiences that disempower, we can act to empower. At the moment, single issue and intersectional approaches are only re-creating dominant narratives of personhood that fit within capitalist systems, keeping relational experiences of impairment invisible and hidden. This is what the COVID-19 pandemic has exposed, how capitalism uses certain Bodyminds and can disable (keep subaltern) but this is not what decolonial intersectionality reveals unless we change our intersectional categories or decolonise those. The Necropolitics of the Anthropocene: Impossible working lives The COVID-19 pandemic illustrated the ways in which certain Bodyminds are used to ensure racialised capitalist systems and, as such, has emphasised the continuity of colonial power structures in turbulent and unpredictable ways, which needs critical analysis to transform these colonial dynamics of power, being and knowledge (Quijano, 2007). Although the trajectory of the COVID-19 outbreak highlighted these underlying global inequalities, these

Impossible working lives and disabled Bodyminds during capitalism

131

should not be understood as solely pandemic-related, but rather, ‘as an ongoing and progressive process of social exclusion that is deeply rooted in the colonial idea of human hierarchy’ (Afeworki Abay and Wechuli, 2022, p. 168). They reveal which Bodyminds matter and why. Decolonial scholars such as Grosfoguel (2007, 2013), Maldonado-Torres (2007, 2011), Mignolo (2008, 2011) or Quijano (2000, 2007) have labelled these systems as the colonial matrix of power or coloniality of power. As discussed above in the German and United Kingdom contexts, both prepandemic and during the pandemic, we have shown a series of existing and historical social inequalities for many BIPoC communities and how they are viewed instrumentally in racialised capitalism (Afeworki Abay, 2022). During the pandemic, various forms of colonial continuities, global inequalities and necropower have been cited as a major drivers of increased risk of social exclusion for many marginalised groups. The relevant question is therefore, why has the Necropolitics of employment been neglected within Eurocentric discourses and pandemic politics? Why are working lives so impossible for BIPoC with disabilities? We argue that the continuity of social injustice is based on the colonial legacies of the idea of human hierarchy that are embedded in necropolitics (Mbembe, 2019), which reproduces subjugation of colonialised subjects and allows discrimination and dehumanisation of the subaltern and their resistance. In this regard, for better or worse, the outbreak of COVID-19 has brought to light the importance of two vital elements, both of which are indispensable to effectively address the persistent social inequalities in racialised capitalism. On the one hand, it is not surprising that these developments pose a wide-ranging socio-economic threat for communities such as disabled BIPoC, as they already have enormous restrictions in accessing, for example, healthcare, social and welfare systems, as well as mainstream employment. On the other hand, it has raised complex ethical questions about how these issues should be solved in the contemporary postcolonial moment, where there are growing global issues of unequal distribution of resources and work that is necessary to live but that work is killing people and the planet. Furthermore, the pandemic has meant a revalourisation of the public work we do to ensure our private lives, caring and kinship structures with more emphasis being given to flexible work, working from home and more equitable and non-exploitative working conditions. In this, discourses of resistance and rethinking of work have been critical to understand but have not always been acknowledged as such. Referring to the above discussions on the lived experiences of disabled BIPoC in the United Kingdom and Germany in the light of the pandemic, it can be stated that the situation is difficult for this population due to previously existing disparities in healthcare and social services during a decade of austerity and neoliberal cuts. Their voices and experiences have been silenced in the media and political discourses during the pandemic and this present moment, especially as the focus turns to ensuring the

132

Robel Afeworki Abay and Maria Berghs

re-activation of the global economy again. Ableism is predicated on racism and social sorting of Bodyminds, including disability, and as such, it is important to understand but how do we locate ableism within the wider racialised capitalist structures of exploitation? This illustrates that while decolonial intersectional perspectives are important, we are missing something if what we are revealing is systems of discrimination (even if historical) without effecting change during the crisis of the Anthropocene. A real decolonisation of intersectionality would now have to be inclusive of wider categories of identity and also impacts of how, when and where we work, learning from subaltern resistance and rights to work. Conclusion In this chapter, we have noted how we are at a moment where we are rethinking work and employment and how we should ensure a politics of ‘living’ and not re-establish a necropolitical order and contribute to racialised capitalism. An intersectional perspective has always been based on our embodied differences and neglected decolonial perspectives, as illustrated in examples from the United Kingdom and Germany. However, if we want to effect change and address discrimination, we have to not only examine decolonial narratives and boundaries that make up our Bodyminds and processes of subalternation but also those that function to exploit our planet. We suggest that decolonial perspectives need to include wider categories of identity than those suggested by racialised capitalisms and incorporate ideas of historical genealogy of discriminations as well as environmental impacts as a type of intersectionality to interrogate. With the focus on the ‘able’ male white heteronormative middle-class person in the Global North, issues of capitalism become focused on the sites of difference as they are related to embodiment and not the structures that effect and create those differences and structures. To truly decolonise, we need to think of how structures and institutions can decolonise disability and rethink their working practices so they are not exploitative of labour in the global North and South (Afeworki Abay and Soldatic, 2024). Decolonisation also means an awareness of Eurocentrality of the human Bodyminds and instead upends that by thinking about historical and environmental discriminations as they affect and create the subaltern – inclusive of disabilities. The labour market systems and technology have always been viewed as a need of modern society but post-pandemic we need to ask how capitalism can make BIPoC lives possible. What would be necessary to be able to ensure a way of life and labour that is not involved in the exploitation, discrimination and humiliation of other people, places as well as destruction of our environment – what has become the new necropolitical order.

Impossible working lives and disabled Bodyminds during capitalism

133

Note 1 Concurring with Sami Schalk (2018), we use the term Bodyminds to overcome the colonial and binary constructions of the intricate and often inseparable relationship between the body and the mind. Bodyminds highlights how the physical and the mental are inseparably intertwined to one another in the context of race, disability, and gender.

References Abrams, T., and Abbott, D. (2020) ‘Disability, deadly discourse, and collectivity amid coronavirus (COVID-19)’, Scandinavian Journal of Disability Research, 22, pp. 168–174. Afeworki Abay, R. (2023) Dekolonialisierung des Wissens: Eine partizipative Studie zu Diskriminierung und Teilhabe an Erwerbsarbeit von BIPoC mit Behinderungserfahrungen. Bielefeld: transcript. Afeworki Abay, R., and Soldatic, K. (2024) ‘The Coloniality of Disability: Analyzing intersectional colonialities and subaltern resistance’, in T. Chataika and D. Goodley (eds.) The handbook of postcolonial disability studies. London: Routledge. Afeworki Abay, R., and Wechuli, Y. (2022) ‘“We are here, because you were there”: Necropolitics as a critical framework for analysing the complex relationship between colonialism, forced migration and disability’, in A. Delic, I. Kourtis, O. Kytidou, S. Sarkodie-Gyan, U. Wagner, and J. Zölch (eds.) Globale Zusammenhänge, lokale Deutungen: Kritische Positionierungen zu wissenschaftlichen und medialen Diskursen im Kontext von Flucht und Asyl. Wiesbaden: Springer VS, pp. 25–36. Afeworki Abay, R. (2022) ‘Rassismus und Ableism: Same, same but different? Intersektionale Perspektiven und konviviale Visionen auf Erwerbsarbeit in der Dominanzgesellschaft’, in B. Konz and A. Schröter (eds.) DisAbility in der Migrationsgesellschaft: Betrachtungen an der Intersektion von Behinderung, Kultur und Religion in Bildungskontexten. Bad Heilbrunn: Klinkhardt, pp. 93–110. Amirpur, D. (ed.) (2016) Migrationsbedingt behindert? Familien im Hilfesystem: Eine intersektionale Perspektive. Bielefeld: transcript. Berghs, M., and Dyson, S. M. (2020) ‘Intersectionality and employment in the United Kingdom: Where are all the Black disabled people?’, Disability and Society, pp. 543–566. https://www.tandfonline.com/doi/pdf/10.1080/09687599.2020.1829556? casa_token=f8jgkgmt_50AAAAA:x8v4o1eAwxk37izgPJfr
liCftC00zJ9Cak7Fl0JeRP3O FpXZ9RWbjnZ7FfEwhu_QLdzAbsnZg Berghs, M., Chataika, T., El-Lahib, Y., and Dube, K. (eds.) (2019) The Routledge handbook of disability activism. London and New York: Routledge. Berghs, M. et al. (2021) ‘‘They can replace you at any time!’ in visible hyper-ableism, employment and sickle cell disorders in England’, Scandinavian Journal of Disability Research, 23(1), pp. 348–359. Berghs, M. J. et al. (2016) ‘Implications for public health research of models and theories of disability: a scoping study and evidence synthesis’, Public Health Research, 8(4). Biermann, H. (ed.) (2015) Inklusion im Beruf. Stuttgart: Kohlhammer. Bilge, S. (2013) ‘Intersectionality undone: Saving intersectionality from feminist intersectionality studies’, Du Bois Review: Social Science Research on Race, 10(2), pp. 405–424. Blume, A. W. (2017) Social issues in living color: Challenges and solutions from the perspective of ethnic minority psychology [3 volumes]. Praeger: ABC-CLIO. Campbell, F. K. (2020) ‘The violence of technicism: Ableism as humiliation and degrading treatment’, in Ableism in academia: Theorising experiences of disabilities and chronic illnesses in higher education. London: UCL Press, pp. 202–224.

134

Robel Afeworki Abay and Maria Berghs

Campbell, F. (ed.) (2009) Contours of ableism: The production of disability and abledness. Cham: Springer. Carbado, D. W. (2013) ‘Colorblind intersectionality’, Signs, 38(4), pp. 811–845. Carbado, D. W., and Gulati, M. (2013) ‘The intersectional fifth black women’, Du Bois Review: Social Science Research on Race, 10(2), pp. 527–540. Çetinkaya, H., Douglass, F., and Davis, A. (2020) ‘Black lives matter, Covid-19 and the scene of politics’, The New Pretender. http://new
pretender.com/2020/06/07/ black
lives
matter
covid
19
and
the
scene
of
politics/ Inhttp://new
pretender.com/ 2018/02/25/pretending
final
inventory
check
upon
leaving
europe/ Crenshaw, K. W. (1989) ‘Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine’, University of Chicago Legal Forum, 139, pp. 139–168. Crenshaw, K. W. (1991) ‘Mapping the margins: Intersectionality, identity, and violence against women of color’, Stanford Law Review, 43(6), pp. 1241–1300. Dyson, S. M. et al. (2021) ‘On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England’, Social Science and Medicine, 272. https://www.sciencedirect.com/science/article/pii/S0277953621000459?casa_ token=GO9arUX2UvEAAAAA:DzTmQGKgBBenI_pB94J4uxlS4eVCApQ20Vso 1Nnk7Z9UI5Lg7SmfNXCPGikrH3Rwviiu7uk Dyson, S. (ed.) (2019) Sickle cell and the social sciences: Health, racism and disablement. London: Routledge. Edwards, Z. (2021) ‘Racial capitalism and COVID-19’, Monthly Review, 72(2), pp. 33–46. Emerson, E. et al. (2021) ‘The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK’, Journal of Public Health, 43(3), 472–478. Fraser, N. (2016) ‘Expropriation and exploitation in racialised capitalism: A reply to Michael Dawson’, Critical Historical Studies, 3(1), pp. 163–178. Grosfoguel, R. (2007) ‘The epistemic decolonial turn: Beyond political-economy paradigms’, Cultural Studies, 21(2-3), pp. 211–223. Grosfoguel, R. (2013) ‘Epistemic racism/sexism, Westernized universities and the four genocides/epistemicides of the long 16th century’, Tabula Rasa, 19, pp. 31–58. Hu, Y. (2020) ‘Intersecting ethnic and native–migrant inequalities in the economic impact of the COVID-19 pandemic in the UK’, Research in Social Stratification and Mobility, 100528. https://www.sciencedirect.com/science/article/pii/S0276562420300640?casa_ token=
uJ3CCA95mIAAAAA:SxdAW4_p8SY
sD1ZZIa8qas1VfD3iEiwVHAZv
Tyay Zgi1E2XJVez4pKID4oxGGM2tl1ras Hutson, C. (2007) ‘Schwarzkrank? Post/koloniale Rassifizierungen von Krankheit in Deutschland’, in K.-N. Ha, N. Lauré al-Samarai, and S. Mysorekar (eds.) re/ visionen. Postkoloniale Perspektiven von People of Color auf Rassismus, Kulturpolitik und Widerstand in Deutschland. Münster: Unrast, pp. 229–241. Hutson, C. (2011) ‘Krankheit/ Behinderung’, in S. Arndt and N. Ofuatey-Alazard (eds.) Wie Rassismus Aus Wörtern Spricht: (K)Erben des Kolonialismus im Wissensarchiv Deutscher Sprache: Ein Kritisches Nachschlagewerk. Münster: Unrast, pp. 403–411. Jampel, C. (2018) ‘Intersections of disability justice, racial justice and environmental justice’, Environmental Sociology, 4(1), pp. 122–135. Jashinsky, T. L. et al. (2021) ‘Disability and COVID
19: Impact on workers, intersectionality with race, and inclusion strategies’, The Career Development Quarterly, 69(4), pp. 313–325. Köbsell, S., and Pfahl, L. (2015) ‘Behindert, weiblich, migriert – Aspekte mehrdimensionaler Benachteiligung’, AEP Informationen. Feministische Zeitschrift für Politik und Gesellschaft, 42(4), pp. 10–14.

Impossible working lives and disabled Bodyminds during capitalism

135

Köbsell, S. (2019) ‘“Disabled asylum seekers? … They don’t really exist.” Zur Unsichtbarkeit behinderter Flüchtlinge im Hilfesystem und im behindertenpolitischen Diskurs’, in M. Westphal and G. Wansing (eds.) Migration, Flucht und Behinderung: Herausforderungen für Politik, Bildung und psychosoziale Dienste. Wiesbaden: Springer VS, pp. 63–80. Korntheuer, A., Afeworki Abay, R., and Westphal, M. (2021) ‘Forschen in den Feldern von Flucht und Behinderung: Ein Vergleich von forschungsethischen Herausforderungen und notwendigen forschungspraktischen Rahmenbedingungen’, in J. Franz and U. Unterkofler (eds.) Forschungsethik in der Sozialen Arbeit: Prinzipien und Erfahrungen. Theorie, Forschung und Praxis der Sozialen Arbeit. Berlin: Barbara Budrich, pp. 229–242. Kurtiş, T., and Adams, G. (2016) ‘Decolonial intersectionality: Implications for theory, research, and pedagogy’, in K. A. Case (ed.) Intersectional pedagogy: Complicating identity and social justice. London: Routledge/Taylor and Francis Group, pp. 46–59. Lund, E. M. et al. (2020) ‘The COVID-19 pandemic, stress, and trauma in the disability community: A call to action’, Rehabilitation Psychology, 65(4), pp. 313–322. Maldonado-Torres, N. (2007) ‘On the coloniality of being’, Cultural Studies, 21(2-3), pp. 240–270. Maldonado-Torres, N. (2011) ‘Thinking through the decolonial turn: Postcontinental interventions in theory, philosophy, and critique—an introduction’, Transmodernity: Journal of Peripheral Cultural Production of the Luso-Hispanic World, 1(2), pp. 1–15. Maroto, M., and Pettinicchio, D. (2020) ‘An unequal labor market means that Covid-19 has been especially harmful for vulnerable groups including people with disabilities’, USAPP–American Politics and Policy Blog, 21 May. Massumi, B. (ed.) (2015) The power at the end of the economy. Durham: Duke University Press. Mbembe, A. (ed.) (2019) Necropolitics. Durham and London: Duke University Press. Mbembe, A. (2000) ‘At the edge of the world: Boundaries, territoriality, and sovereignty in Africa’, Public Culture, 12(1), pp. 259–284. McClure, E. S. et al. (2020) ‘Racial capitalism within public health—how occupational settings drive COVID-19 disparities’, American Journal of Epidemiology, 189(11), pp. 1244–1253. Mignolo, W. D. (2008) ‘The geopolitics of knowledge and the colonial difference’, The South Atlantic Quarterly, 101(1), pp. 57–96. Mignolo, W. D. (2011) ‘Geopolitics of sensing and knowing: On (de)coloniality, border thinking and epistemic disobedience’, Postcolonial Studies, 14/3, pp. 273–283. Morris, R . (2019). ‘Disabled People and Employment’, in N. Watson and S. Vehmas (eds.) The Routledge Handbook of Disability Studies. London: Routledge, pp. 250–264. Pieper, M. (2016) ‘Assemblagen von Rassismus und Ableism. Selektive Inklusion und die Fluchtlinien affektiver Politiken in emergenten Assoziationen’, Movements Journal for Critical Migration and Border Regime Studies, 2(1), pp. 91–116. Pieper, M., and Haji Mohammadi, J. (2014) ‘Ableism and racism: Barriers in the labour market’, Canadian Journal of Disability Studies, 3(1), pp. 65–92. Quijano, A. (2000) ‘Coloniality of power and Eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Quijano, A. (2007) ‘Coloniality and modernity/rationality’, Cultural Studies, 21(2), pp. 168–178.

136

Robel Afeworki Abay and Maria Berghs

Salem, S. (2014) ‘Decolonial intersectionality and a transnational feminist movement’. Feminist Wire. Available at: https://thefeministwire.com/2014/04/ decolonial-intersectionality/ Schalk, S. (2018) Bodyminds reimagined: (Dis)ability, race, and gender in Black women’s speculative fiction. Durheim: Duke University Press. Tidball, M., Lawson, A., Lee, L., Herring, J., Sloan, B., Mallick, K., Holloway, D., and Ryan, S. (eds.) (2020) An affront to dignity, inclusion and equality: Coronavirus and the impact of law, policy and practice on people with disabilities in the United Kingdom. Oxford: University of Oxford. Tsing, A. L. (ed.) (2015) The Mushroom at the end of the world. New Jersey: Princeton University Press. United Nations (2006) Convention on the rights of persons with disabilities. New York: UN. United Nations (2015) Transforming our world: The 2030 agenda for sustainable development. New York: UN. Virdee, S. (2019) ‘Racialised capitalism: An account of its contested origins and consolidation’, The Sociological Review, 67(1), pp. 3–27. von Unger, H. (ed.) (2014) Partizipative Forschung. Einführung in die Forschungspraxis. Wiesbaden: Springer VS. Wansing, G., and Westphal, M. (eds.) (2014) Behinderung und Migration: Inklusion, Diversität, Intersektionalität. Wiesbaden: Springer VS.

8

Stigma as a structure of disablement Towards collective postcolonial justice Valérie Grand’Maison and Karen Soldatić

Introduction It is 3 am, Saturday morning, Montréal. The cops are standing on the corner, trying to calm her down. She is angry, yelling, screaming ‘touchez moé pas,’ ‘eille, lâchez moé, j’ai rien faite.’ She is bleeding from the head. The cops have her surrounded. They are yelling back, ‘Calmez vous, madame. On vous amène au poste.’ Rose keeps yelling back, ‘Non, j’ai besoin d’aller à l’urgence, vous voyez pas? Je me suis faite tabassée, j’ai du sang partout! Amenez-moi à l’urgence!’ Then she collapses. The police pick her up and put her in the back of their van and take her back to the police station. She is charged with drunk and disorderly conduct. In the morning, when she wakes up, Rose is severely agitated. She cannot remember much from last night, just that when she left the bar in the Village to go home, a couple of young white guys started chasing her down the street, grabbed her and started beating her. That is all she can recall. She remembers police somewhere through the night but unsure, it is all blurry, unclear … she admits it is just dark, vacant, and empty when she tries to recall anything from the previous night. How did she get into the cell she just does not know, but here she is. Rose, is a disabled cisgendered women—she knows what it means to walk funny in these streets at night. Her chest is tight and getting tighter, finding it difficult to breath. She starts crying and calls out for help. What was she doing here? Her head hurt like hell. She can feel a massive bump and her swollen face. Blood dried on her face was peeling, cracking through her tears. She cried and yelled for help, no one came … Activists, scholars, service providers, and political elites are now widely recognising gendered violence as a societal problem across diverse geopolitical contexts (CSW 65, 2021) and that historically marginalised women, especially Black and Indigenous women, women of colour, women with DOI: 10.4324/9781003280422-9

138

Valérie Grand’Maison and Karen Soldatić

disabilities, queer, two-Spirit, and transwomen, face increased rates of violent victimisation both out in public and within the intimacies of their homes (Dlamini, 2021; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Soldatic et al., 2023). Global research consistently demonstrates that despite targeted efforts, for historically marginalised and diverse women, the forms, types, and frequency of violence that they experience remain largely unchanged and, in some instances, have only become more intensified and prevalent, particularly for young women of colour (see Dlamini, 2021). Further, it reports that the intensification of gender-based violence within the domestic sphere was particularly acute throughout the pandemic lockdowns in all countries where evidence is available (Dlamini, 2021; Piquero et al., 2021; Roesch et al., 2020; Sánchez et al., 2020). There is little evidence to suggest that this has dissipated in any real form since the slow return to pre-covid mobility (UN Women, 2022). Experiences of disability are often intertwined with those of gendered violence: women with disabilities, globally, report a higher incidence of gendered violence than non-disabled women, and violent victimisation, especially when survivors do not receive the care and support that they need in the aftermath of violence, can lead to long-term disability. In settler colonial contexts, gendered violence functions as a technology of racial and patriarchal control that coalesces with other forms of direct and indirect violence in ways that disable large groups of people. In Australia, Fitts et al. (2022, 2023) document that Indigenous women are 69 times more likely to acquire a permanent and ongoing disability because of direct forms of violence. In turn, given the co-constitution of racial, gendered, and embodied hierarchies, racialised women who live with a disability are either denied care or are not treated with appropriate supports and healthcare, with devastating consequences for their long-term health, safety, and ontological security across the life course (Sisters Inside and ICRR, 2021). The impacts too often diminish women and girls’ future capacities to provide care for themselves and others, leaving them in highly precarious living arrangements, increasing and/or creating qualitative new vulnerabilities that frequently lead to further forms of violence—relationally, structurally, and materially (Dlamini, 2021; Soldatic, 2015, 2018; Spagnuolo and Bélanger, 2018). We are interested in the conditions that make violence against women, and especially historically marginalised women, pervasive, across geographical, political, and socio-cultural contexts. The conditions that subtend gendered violence are those material and discursive practices that place women in situations of invisibility, dys-appearance, appearing only in dysfunction (see Grand’Maison and Murillo Lafuente, 2022; Paterson and Hughes, 1999), instability, uncertainty, and/or that label them as deserving of violence. Research clearly demonstrates, for example, the relationship between experiences of gendered violence and poverty (Menjívar, 2011; True, 2012), precarious immigration status (Robillard et al., 2018), unaffordable housing

Stigma as a structure of disablement

139

(Yakubovich and Maki, 2022), and unstable and/or institutional care contexts (Grand’Maison and Murillo Lafuente, 2022). They create contexts in which women have limited life options and must choose between different forms of violence. In this chapter, we created composite stories through media narratives of violence against disabled women, BIPOC women, and sexually and gender-diverse women to reveal the continual stigmatisation of bodies and minds deemed outside the boundaries, borders, and polity of settler colonial nation states. Through this unique methodological window, we are able to understand stigma as the gear that creates and sustains the disabling environment that undergirds violent victimisation for historically marginalised women—both historically and more pervasively. Importantly, the stigmatisation process of disablement is one of political struggle; it therefore informs possibilities of broad-based coalitions against gendered violence. Settler colonial context, eugenics, and practices of violence As well articulated in recent and ongoing public inquiries into violence in Canada against Indigenous women and girls and in Australia against persons with disabilities, within settler colonial contexts, specific forms of violence are central to first maintaining and then deepening the normalisation of settler colonial rule (Dhillon, 2015; Mack and Na’puti, 2019; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Razack, 2000, 2015, 2016; Soldatic, 2015, 2018). Settler colonial regimes governing First Nations bodies, minds, souls, lands, and waterways were central to the enterprise of Empire (Grech, 2016; Soldatic, 2015) and have expanded to the control of groups that threaten white supremacy. As Glenn (2015) analyses, settler colonial expansion and wealth accumulation depend on synchronised processes of Indigenous land dispossession and slave labour, which create different logics of population management that, historically and continuously, structure race, gender, and class relations. In other words, there are specific logics that undergird the marginalisation of various social groups: one of elimination towards Indigenous peoples, cultures, and territories, and one of exploitation of African and Pasifika bodies. In this section, to articulate the co-constitution of settler colonialism, gendered violence, and disability, we trace how these violent processes of elimination and exploitation are gendered and gendering, both creating impairments and biopolitical meanings of disability to enable the settler colonial management of different groups. These formulations will allow us to advance that stigmatisation works as a settler colonial process of physical violence that creates conditions in which gendered violence is pervasive. Violence, through the colonialities of patriarchal racialised structures of coercion, control, and containment against First Nations communities, was a deliberate tactic of genocidal dispossession (Moreton-Robinson, 2011; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019). Conquest in settler colonial governance was driven by the

140

Valérie Grand’Maison and Karen Soldatić

logics of genocide—to replace First Nations peoples through violent colonial processes of Indigenous population elimination (Glenn, 2015; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019; Wolfe, 2006). DesLandes et al. (2022), mapping through the gendered racialised violence of empire and its carceral logics of containment, illustrate the gendered specific colonialities that normalise the violent racial control of First Nations women’s bodies, where, for example, containing their reproductive capacities was a critical component of settler genocidal dispossession (see also Carlson, Day, and Farrelly, 2021). Indeed, many decolonial feminists explicitly situate gendered violence as a tool of ongoing colonial dispossession. For example, Razack (Razack 2000, 2016) meticulously traces the colonial and patriarchal construction of Indigenous women as disposable, enacted through sexual violence and impunity. She argues that the murders of Indigenous women in conjunction with the public illustrations of the violence are fundamental to the ongoing colonial process in Canada: ‘the violence that is written on the flesh tells the colonial story of whose bodies have value. The wounds and injuries are pedagogical; they teach us the limits of the human’ (2016, p. 291). Colonial regimes of elimination thus operated through violently imposing gendered hierarchies (Mack and Na’puti, 2019; Razack, 2016). Logics of elimination are moreover evident in eugenics ideology, a central justifying discourse of Empire across the colonies where white supremacy is upheld through the diagnosis of biological markers of difference as ‘defect,’ stratifying bodies and minds premised upon pseudo-scientific statistical measurement of ableism (Campbell, 2009; Dolmage, 2018). Disability henceforth became a core colonial construct used to evaluate, hierarchise, and exclude, mark out and make abject, bodies and minds in the service of imperialism, white supremacy, and global capitalism. Eugenics operated to dispossess Indigenous communities of their lands, waters, cultures, and nations all with the logics of replacing First People with settlers and settler species, that is, to make First Nations peoples, community, customs, and lore, dys-appear (see Day this volume). Disability was also deployed in the creation of state borders, where the first national legislations across several settler colonial states specifically aimed to label people as ‘disabled’ based on country of origin and reject them at the border (Dolmage, 2018). Negative eugenics thus jointly operated to ensure the socio-political death of Indigenous people within First Nations lands, the exclusion of racialised ‘others’ at the border, and to secure the dys-appearance of disability and its invisibility within the newly formed settler colonial nation state. State structures of violence implicit in settler colonial biopolitical practices of bordering remain largely in place, where new statistical measures of gendered capitalist productive value act to reinforce the exclusion of racialised and disabled bodies and minds at the borders, despite settler colonial states advancing rights discourses within internal national narratives.

Stigma as a structure of disablement

141

Ajša was moved into a group home where there were four other coresidents, three men and one woman. Ajša lived with Down Syndrome and lived with her parents until the most recent passing of her mother – her final surviving parent. The family was from the Former Yugoslavia and fled the war as refugees. Even though the family were secular Muslims, they found that they were directly targeted by vigilantes and civilian combatants. Ajša does not remember much from that time at all, she had just started school. Her elder siblings, however, often recall their escape and the family’s rejection of their refugee status to Australia because of Ajša’s disability. Eventually, the family were granted a humanitarian refugee visa for Canada. When they arrived, they were introduced to different local disability support services who would then strongly encourage the family to place Ajša in a segregated education setting, even though she had started a regular state school in the former Yugoslavia. Ajša’s parents wanted many things for her future: education, a job, and a supportive friendship group. They had planned for Ajša to transition to a shared housing arrangement but decided against this after she was raped whilst on a special school camp. No one ever found out if it was a peer, one of the informal volunteer carers, professional paid support staff or teachers. The family felt they could not risk putting her through another abortion. They informed all these details to the new disability social assistance case worker—however, due to the urgency of needing to move out of the family home with the death of her mother, her siblings agreed reluctantly to the shared disability congregated housing placement. From the outset, none of their requests were considered and as a result, there were huge issues particularly around Ajša’s safety and wellbeing and ethno-cultural support as a secular Bosnian Muslim refugee family. For example, her siblings lived more than 80 minutes’ drive away, making it difficult to check on her regularly – a core ask to ensure her safety given Ajša’s history. The move was so far from her childhood family home that she would now have to get a brand-new healthcare provider and rebuild the relationships of trust with specialists, which could not be guaranteed again. And finally, the housing situation itself was dire where privacy was practically non-existent. There were no locks on the bedrooms, the bathrooms were shared and often, staff and some of the house mates would force their way into the bathroom when she was showering. Ajša’s siblings became distraught, but they could not take her into their own homes because they did not have the means or capability to enable an accessible co-living arrangement with her. After a while, the family noted that Ajša was in early stages of pregnancy. When they reported it to the care service responsible for managing the housing situation, they stated that Ajša must be involved with one of the other residents. There could be

142

Valérie Grand’Maison and Karen Soldatić

no other explanation. Ajša’s family also noted that she had become completely withdrawn and even frightened when they draw her near for greetings. One time, Ajša’s sister arrived to find her cowed in the corner of her bedroom, hiding away from view, half naked crying. The family then reported this to the police which was never investigated nor taken seriously and despite the family’s efforts, no other options to enable Ajša to move her into a new housing situation became available for at least the next three years. Ajša was isolated on so many fronts and lived in fear for her safety and wellbeing consistently. Decolonial feminists argue that Western accumulation rests on the exploitation of racialised bodies, especially those of racialised women—leading to the slow destruction of collective bodies (Glenn, 2015; Vergès, 2019). Francoise Vergès (2019) articulates ‘the economy of the wear and tear of racialised bodies’ (l’économie de l’usure et de la fatigue des corps racisés) as ‘an economy that wears out racialised bodies, depletes the strength of certain individuals designated by capital and by the state as fit to be used up, to become victims of illnesses, debilitations and disabilities’ (p. 76). Vergès’ argument is that this economy brings into view how the bodies of racialised women are used—utilised, but also in the sense of worn out—to promote the well-being of white and masculine bodies. Patriarchal, racial, and colonial control mark racialised women as responsible for the care of others within private and public spaces, including cleaning, cooking, raising children, and tending to people who need assistance. As they occupy menial (dirty) and invisible work, they are further denied the status of women which is based on white, gendered, and middle-class expectations (Glenn, 2015; Vergès, 2019). This places them in precarious working and living conditions that keep them in poverty and at the margins. Although Vergès’ analysis fixes disability as undesirable, it is valuable to examine how wealth accumulation relies on, and is therefore constitutive of, the processes of exploitation and invisibilisation of racialised women and that create disabilities. Puar (2017) adds that racialised bodies used/worn out by these processes of colonialism, wealth accumulation, and white supremacy are seldomly legible as ‘disabled’ by the state, as their deteriorated body is accepted to be a function of their lifestyle, or in other (neoliberal) terms, of the choices they make. Her analysis is fruitful to understand how disability comes to be constructed and legislated within settler colonial contexts: indeed, disability is narrowly defined through whiteness, i.e., dominant representations, expressions, and experiences of white people (and especially men) with disability. This intentionally narrow definition of disability ensures a limited distribution of social disability benefits to those that fit nationalistic narratives of charity—and perpetuates limited life options for those already living in the margins (Puar, 2017). Gendered violence takes place—and is prosecuted (or not)—within these colonial dynamics that justify the elimination and/or exploitation of marked

Stigma as a structure of disablement

143

bodies, who often live with disabilities as a result of the multiple forms of violence that coalesce in their lives. We argue that stigmatisation is a mechanism of settler colonial power operating as structures of disablement, which in turn entrenches stigmatised women in conditions in which gendered violence is likely and normalised. Stigma Mary is a young disabled woman from a small regional town in outback, central Australia who now lives in inner-urban Sydney. Mary moved to Sydney two years ago after she was forced to leave her childhood home. Her family, regular church attendees, made her feel compelled to leave when we she came out bi-sexual to her parents and extended kinship networks. With their deep ties to the local church, they tried to push her into some type of conversion therapy even though it is legally banned. Her parents felt deep shame about Mary’s sexuality and felt that it was a stigma extended to their own reputation within the local Christian church, impacting upon their ongoing membership. Mary’s refusal to attend resulted in the barrage of family and community shaming and she became the target of ad hoc violence, never knowing when she would be targeted. She had to leave. Mary is autistic, and the significant change has been extremely difficult, especially the move from a regional town to a large loud city and trying to find fully accessible youth accommodation. She moved into a Youth Centre, close to the Sydney CBD, trying to get her life back on track. Even though she loves the freedom of the big city, as a Queer young cisgendered disabled woman, every day she is still forced to face a barrage of shaming, disrespect and indignities. When out in public, walking on the street, she often has young men scream a torrid of disparaging names associated with either her disability or sexuality. She has found a job in an office in the city under the disability employment program but she feels deeply excluded from her peers. She often sees the other young team members eating lunch together. She is not sure if this is because of her disability, being openly bi-sexual, or because of her rural mannerism. Whatever it is, she feels different from her more sophisticated city colleagues. She has become frightened of walking home at night when working back late. One night on her way home she was confronted by a group of cisgendered young people who circled her and called her devastating names, all associated with her disability. After about 15 minutes of circling her, they pushed her over, so she hit her head on the pavement, leaving Mary lying on the street unconscious. A bystander saw her lying on the ground and called an ambulance. After two days, Mary left hospital and went back to her room at the Youth Hostel. She was too ashamed to go back to

144

Valérie Grand’Maison and Karen Soldatić

work with the bruising around her face and took two weeks off, unpaid, making her return to work precarious as a newly appointed employee on probation. Stigma refers to a negative label imposed on human difference (Barnett, Maticka-Tyndale, and Kenya, 2016, p. 450) that carries connotations of being ‘less-than’ and can be internalised by those who carry it as shame (Tyler, 2020). The reciprocal relationship between stigma and gendered violence has been well-documented. On the one hand, women who are stigmatised within their community (e.g., due to a social label such as disability, race, Indigenous status, gender, or sexual diversity) face increased risks of experiencing gendered violence (Scheer, Pachankis, and Bränström, 2022). Violence is imposed as a consequence of being ‘marked’ as deviant of gendered norms, which themselves reflect racist and ableist ideologies. On the other hand, survivors of gendered violence and their children are often ostracised from their families and communities due to the stigma associated with gendered violence and bear the blame for the violence they have experienced—they are marked as causing trouble within the family and community (Aboulhassan and Brumley, 2019; Barnett, Maticka-Tyndale, and Kenya, 2016; Buchbinder and Eisikovits, 2003). In some contexts, survivors who seek support and justice face additional forms of violence or threats of violence from the person(s) violating them, but also from law enforcement and community leadership who refuse to speak of gendered patriarchal structures internally within their own communities (Barnett, Maticka-Tyndale, and Kenya, 2016; Murphy-Oikonen et al., 2022; Palmater, 2016; Rajan, 2011; Razack, 2015). Taken together, women from historically marginalised groups who experience gendered violence experience heightened and specific forms of stigmatisation—that is further internalised in feelings of shame and low selfworth, which create barriers to disclosure and help-seeking (Fugate et al., 2005; Overstreet and Quinn, 2013). Internalised and social stigma incent survivors to stay silent about the violence, a failure to receive the support that they need in the aftermath of violence and, consequently, in denied opportunities to fully participate in society—the conditions that underlie gendered violence are thus maintained and worsened. Spagnuolo and Bélanger (2018) illustrate that women who are labelled with intellectual disabilities experience multiple forms of violence justified and reinforced by discourses of ‘deficit’ and vulnerability, such that strategies to ‘protect’ these women by service providers strip away their self-determination through segregated housing arrangements, inadequate income and employment access, and many forms of restrictions and surveillance. These conditions entrench violence against women labelled with intellectual disabilities as it becomes invisible and normalised. In recent years, critical sociologists have revisited stigma as structural power (Barnett, Maticka-Tyndale, and Kenya, 2016; Link and Phelan, 2001,

Stigma as a structure of disablement

145

2014; Tyler, 2020). Link and Phelan (2001, 2014) articulate that stigma is a form of power serving the ends of dominant groups, where they manipulate cultural meanings of worth and health to define and dehumanise the Other. Building on Bourdieu’s concept of symbolic power, they argue that stigma works through the wilful misrecognition or lack of recognition of certain groups and perpetuates justification for their ‘exploitation, control, and exclusion’ (Link and Phelan, 2014, p. 24). This stigma power, according to Tyler (2020), is deeply embedded in dynamics of colonialism and global capitalism, where settlers exert physical violence to mark certain bodies with the aim to categorise, hierarchise, exploit, displace, and destroy populations and lands. A literal mark was ironed on Black bodies to indicate their marketability in the chattel slave trade, as ‘an act of making the body legible as property that was put to work in the production of the slave as object that could be bought, sold and traded’ (Browne, 2015, p. 26). The stigma was thus integral to the commodification of populations within colonial dynamics (Browne, 2015; Tyler, 2020). Today, logics of capitalistic extractivism lead to the intensification of violent stigmatisation through, for example, degrading labour conditions, gentrification and shrinking of affordable housing, excessive border enforcement, and anti-immigrant practices. Within these colonial relations of production and reproduction, stigma operates and is experienced in material and embodied ways. Tracy Shildrick (2018), for example, examines how state and media orchestrate the labelling of people living in poverty as individually responsible for the conditions in which they live, a strategy that effectively ensures profit accumulation by erasing the government’s responsibility in degrading life conditions for specific social groups and normalising high levels of social, structural, and physical violence against these groups. In this sense, stigmatisation is embodied through the violent processes of wealth accumulation upon which settler colonial states function and thrive. It is the function of structural stigma to be translated into individual experience by obscuring the macro dynamics underlying the internalised shame through normalisation. These life conditions structured by stigmatisation permeate the boundaries of the flesh, moving to become internalised by those continually exposed to the ongoing dispossession of racialised, ableist patriarchal violent norms within settler colonial contexts. Public discursive structures and material reproduction become ‘common sense.’ This is more than internalised ableism, such as that suggested by Campbell (2008, 2009), but reflects the intensification of ableist violence through its gendered, racialised contours that rip through one’s ontological security and safety. Approaching stigma as a process of disablement contributes to further explaining the pervasive nature of violence against Indigenous, racialised, disabled, and queer people. For decades, disability scholars and activists have debated the concepts of disability and disablement as they are central to understanding and resistance the legitimisation of social, physical, and

146

Valérie Grand’Maison and Karen Soldatić

structural violence against people living with impairments (Oliver and Barnes, 2012). For Jaffee and John (2018), disablement cannot be separated from the logics and practices of settler colonialism such that land dispossession and wilful erasure of Indigenous culture and communities create a social, political, and physical environment that maims and excludes bodies and minds. In other words, disablement is a political process underpinning settler colonialism. Stigmatisation, as a process of disablement constitutive of settler colonial rule, reveals commonalities in the conditions that make gendered violence pervasive for historically marginalised women. Importantly, shifting our conceptualisation of stigma as a form of power illuminates it as a site of struggle and resistance (Tyler, 2020). Transformative justice and decolonisation Our argument is that the stigmatisation of disabled, Indigenous, and other bodies and minds marked as a threat to settler colonialism and capitalistic expansion justifies social, political, and physical environments that make gendered violence and the gendering of violence against marked women and feminised bodies pervasive. This way, stigma, as a structure of disablement, is a political process and thus provides opportunities for broad-based coalitions against violence that emphasise how settler colonialism creates conditions that mark bodies as ‘less-than.’ Feminist solidarity is a welldocumented and debated concept (see Masson, 2010; Mohanty, 2003; Walsh, 2016; Weldon, 2006). Notably, transnational and intersectional feminists have sought to theorise and mobilise the ways in which the lives of diverse women are connected by bringing attention to the global dynamics of production, reproduction, and representation that sustain social hierarchies. Yet, most research and activism on gendered violence, even when adopting an intersectional approach, rarely considers disability as a lived experience of victims/survivors and ignores how processes of disablement co-constitute other forms of oppression and violence. Disablement through stigmatisation as a core mechanism of the gendered violence pervasive in settler colonial contexts opens up sites of broad-based struggles. This approach foregrounds the mutual constitution of settler colonialism and disablement. Jaffee and John (2018) note that settler colonialism creates overlapping dynamics that subtend the histories of Indigenous people’s in settler colonial contexts and those of non-Indigenous disabled people—and thus may inform solidarity. They remark that, as Indigenous peoples and disabled people have experienced, in similar but distinct ways, politics of elimination justified by processes of wealth accumulation. Both groups’ resistance efforts have centred on self-determination and futurity throughout history. These concepts can guide broad-based solidarity towards transformational justice. Self-determination and futurity can be traced in the discursive and material strategies used by disabled activists, who explicitly and implicitly

Stigma as a structure of disablement

147

name and resist stigma as a process of disablement. At an epistemological level, these concepts are evident in the ways in which disabled activists have mobilised the stigma associated with ‘being crippled’ to contest neoliberal dynamics that creates conditions of poverty, precarity, invisibility, and dehumanisation in which many people with disabilities live. The word ‘crip’ has been reclaimed by people with disabilities in an act of defiance and pride, while simultaneously signifying a violent history of stigmatisation. Crip activists reimagine cultural and politicised coalitions of bodies and minds that disrupt expected boundaries between social groups (Kafer, 2013; McRuer, 2018). For McRuer (2018, p. 88), cripping ‘insists on reaching toward new subjectivities opposed to the static identifications that dominant discourses of neoliberalism both demand and use to still or fix’ those considered a threat or burden to wealth accumulation. Importantly, ‘claiming crip,’ Kafer (2013, p. 13) contends, ‘is to recognise the ethical, epistemic, and political responsibilities behind such claims’ and demands a critical analysis of the framing and management of different bodies and minds. Kafer (2013) articulates ‘politics of crip futurity’ to emphasise the political process of thinking collectively about what just and accessible worlds may look like and how to get there. It involves thinking about the boundaries around ‘we’—who is imagined in our accessible future? Whose voices are involved in defining these futures? Who is erased? What Kafer (2013) advocates for is the proliferation of crip futures, where a multitude of ways of being and living can be defined by people situated across social, political, and geographical groups. ‘Cripping’ is thus a generative epistemological process: it rejects what is known in advance and opens possibilities for complexity and contradiction within broad-based coalitions (Kafer, 2013; McRuer, 2018, p. 21). This way, it provides opportunities for thinking about how disability is mobilised in a given context to control or restrict access to supports. And, how, for instance, disability is deployed in service of settler colonialism, capitalist expansion, and white supremacy. Disability Justice collectives were initially established in the United States and Canada by queer, trans, Black, Indigenous, people of colour living with disabilities, whose experiences and claims were not represented in the dominant disability rights movement. They sought transformation by centring decolonisation in contexts where disability is defined and mobilised through processes of settler colonialism and global capitalism, which in turn shape the experiences of disability of people according to race, Indigenous status, immigration status, gender, class, and sexuality. Through arts, performances, protests, writings, care, and kin networks, Disability Justice activists celebrate the histories, skills, beauty, and complexity of nonnormative bodies and minds and work collectively to reimagine social relations that resist all forms of oppression. Recently, Disability Justice activists have played a determinant role in the Black Lives Matter protests in the US working on what activist Leah Lakshmi Piepzna-Samarasinha calls the ‘home front,’ which includes planning protests, creating safe houses for

148

Valérie Grand’Maison and Karen Soldatić

protestors, making sure protestors are well fed and hydrated, and babysitting. This is an example of the innovative ways in which diverse disabled people contribute to broad-based movements against multiple and intertwined forms of oppression. Another example of broad-based solidarity opposing settler politics of elimination is the mobilisation of diverse disability advocates and groups against the expansion of Medical Aid in Dying (MAiD) in Canada. In 2021, the Canadian government legislated the expansion of the eligibility criteria for accessing MAiD to people living with non-fatal conditions, which sparked coalitions amongst groups and people living at the intersections of disability, Indigeneity, poverty, and gender. They argue that the increased availability to MAiD is targeted state violence towards historically marginalised groups as the Canadian government promotes it while systematically failing to provide adequate, timely, and sufficient supports to live well. As such, these activists reject claims that MAiD provides a dignified death in a context where the Canadian government is responsible for denying a dignified life based on disability, Indigenous status, class, or gender. Advocates across diverse social identities and geographical locations have made the link between stigmatisation and the provision of MAiD: they resist politics of dehumanisation by claiming ‘You are important. You are valuable. Your needs are important’ (see Disability Without Poverty, 2022). Advocates situate the expansion of MAiD within current dynamics of the housing and cost-of-life crises that further impact these groups disproportionately. For example, the DisAbled Women’s Network of Canada claims that women with disabilities are more likely than any groups of living in poverty and face important challenges to secure affordable and accessible housing. As they face limited life options, they may consider MAiD as relief from this structural disablement (Brayton, 2022). Similarly, Indigenous advocates opposing MAiD explicitly articulate that the stigma marked on Indigenous bodies in Canada leads to systemic discrimination within healthcare institutions and makes Indigenous people reluctant to seek care—which, in turn, may cause increased suffering with little options for relief. It is in this context of stigmatisation that individuals may consider MAiD as an option to let go of the pain they live in (Alhmidi, 2021). Not only do activists shed light on the limited life options carved by insufficient social assistance, they also denounce the government’s intentional silencing of opposing views during the legislative process. In an open letter to the Special Joint Committee on Medical Assistance in Dying, disability activists, people with lived experience related to MAiD, and physicians claimed that, during the Committee’s consultations, they were ‘routinely talked over, ignored, argued with and at times openly disparaged by committee members in favour of amplifying the ideology of MAID expansionists and pro-MAID lobby groups’ (Gaind et al., 2023). They expose the Committee’s manipulation of data and statements opposing MAiD and the deliberate dismissal of disabled people’s lived experiences at the expense of

Stigma as a structure of disablement

149

pro-MAID physicians without expertise in disability. For advocates, this imbalance in weighing expertise reveals deeply-seated ableist ideologies that reinforce discourses that disabled life is not worth living—which effectively materialises in the inadequate supports provided to disabled Canadians. Disability advocacy opposing MAiD reveals crip strategies as boundaries between and within groups are blurred and questioned. It is noteworthy that the expansion of MAiD at the federal level follows the advocacy of two disabled persons in Québec, who successfully challenged the Supreme Court of Québec on grounds that the prohibition of people with non-foreseeable deaths is unconstitutional. Today, there are many disabled advocates that support the expanded access to MAiD as a path affirming their body autonomy and liberating them from chronic pain. There is no homogeneity in the position of disabled people and groups regarding MAiD in Canada—yet, pro-MAiD activists strategically mobilise the discourses of pro-MAiD disabled advocates as representing those of the entire disability community, effectively fixing what it means to be disabled by ignoring nuances and contradictions amongst diverse disability groups. Moreover, disabled advocates opposing MAiD navigate the co-optation of conservative pundits, who largely oppose MAiD based on deficit understandings of disability, where disabled people need to be ‘helped.’ They do this by shedding light on the government’s process of disablement that prevents the full participation of people with disabilities and their right to be recognised as valued member of their community. They emphasise that it is not in itself MAiD that is the problem, but the insufficient safeguards to access it and the context of structural violence in which people make choices about ending their life. While crip epistemologies and resistance to MAiD do not explicitly address gendered violence, these examples may be useful hints in imagining and enacting broad-based coalitions that seek to transform the conditions that make gendered violence pervasive. Specifically, they contribute to thinking through stigmatisation processes that create boundaries between those marked as unworthy of recognition and care and those that remain unmarked. They encourage us to reject taken-for-granted knowledges and to ask what social and political functions these stigma boundaries serve, who benefits from them, at the expense of whom, and whose experiences are being erased or misconstrued. In the context of feminist anti-violence mobilisation, these questions are necessary to ensure that the discourses and practices of gender justice do not further create disablement for entire groups of women—it demands that activists reflect on how their efforts centre and challenge the conditions that make gendered violence against diverse women possible. Conclusion We are animated by questions related to the prevention and resistance to gendered violence that both predominantly affects women with disabilities but also creates and exacerbates disabilities, especially for women from

150

Valérie Grand’Maison and Karen Soldatić

historically marginalised groups in specific contexts. How can we build antiviolence coalition that both recognises the specific knowledges and skills of disabled women while also seeking to prevent disability caused by various forms of violence? We argue that stigmatisation as a settler colonial process of disablement opens up opportunities for transformative justice. Drawing from composite stories created through an analysis of news media in Canada and Australia, we demonstrate that gendered violence and the gendering of violence work as a mechanism in stigmatising marginalised women’s bodies as a biopolitical practice of everyday forms of settler colonial power. The stigmatisation of these women, including gendered diverse women, functions as a structure of disablement that limits their life options and futures and simultaneously secures colonial expansion and wealth accumulation. In this sense, stigmatisation is a form of biopolitical power that sustains settler colonial expansion and dispossession and creates the conditions in which violence against women is pervasive. This negative label, as a tool debasing Indigenous, disabled, racialised, and queer cisgendered and diverse women’s bodies in diverse settler colonial regimes of power and rule, operates in continuous practices of elimination and exploitation, with a modernising force of dys-appearance. The processes of stigmatisation that make gendered violence possible, normalised, and invisible are sites of struggles for diverse groups and can therefore spark broad-based solidarity and mobilisation practices of resistance. We situate gendered violence as a core pillar of ongoing colonialism in its multitude of structures—a mechanism used to reinforce hierarchies of bodies—an acute form of biopolitical population management. As decolonial thinkers, activists, and practitioners have illustrated, approaching gendered violence as a systemic, structural process of domination and exclusion/extermination brings connections between the specific forms of violence experienced by diverse women. In other words, we cannot forego analyses of gendered violence founded on group comparison and differentiation—it is critical to emphasise how gendered violence is coconstitutive of other forms of structural violence rooted in colonialism and global capitalism and works to deteriorate bodies that challenge white supremacy so that non-normative racialised gendered bodies dys-appear. If we start approaching the stigma of gendered violence as a structural biopolitical mechanism that aims to deteriorate the collective bodiesminds-and-souls of women at the margins, we can imagine broad-based coalitions to advance social solidarity and justice. References Aboulhassan, S., and Brumley K. M. (2019) ‘Carrying the burden of a culture: Bargaining with patriarchy and the gendered reputation of Arab American women’, Journal of Family Issues, 40(5), pp. 637–661. Available at: 10.1177/ 0192513X18821403

Stigma as a structure of disablement

151

Alhmidi, M. (2021) ‘No address anti-Indigenous racism in health care before expanding MAID: Advocates, MP’, CTV News. 26 February. Available at: https://www.ctvnews. ca/politics/address-anti-indigenous-racism-in-health-care-before-expanding-maidadvocates-mp-1.5325770?cache=yhhjfawzhplxi%3FcontactForm%3Dtrue Barnett, J. P., Maticka-Tyndale, E., and Kenya, T. (2016) ‘Stigma as social control: Gender-based violence stigma, life chances, and moral order in Kenya’, Social Problems, 63(3), pp. 447–462. Available at: 10.1093/socpro/spw012 Brayton, B. (2022) ‘On medical assistance in dying, it’s time for the government to walk it all the way back’, National Newswatch. 22 December. Available at: https://www. nationalnewswatch.com/2022/12/22/on-medical-assistance-in-dying-its-time-forthe-government-to-walk-it-all-the-way-back/#.ZCnLrHbMI2w Browne, S. (2015) Dark matters: On the surveillance of blackness. Durham, North Carolina: Duke University Press. Buchbinder, E., and Eisikovits, Z. (2003) ‘Battered women’s entrapment in shame: A phenomenological study’, American Journal of Orthopsychiatry, 73(4), pp. 355–366. Available at: 10.1037/0002-9432.73.4.355 Campbell, F. A. K. (2008) ‘Exploring internalized ableism using critical race theory’, Disability & Society, 23(2), pp. 151–162. Available at: 10.1080/09687590701 841190 Campbell, F. A. K. (2009) Contours of ableism: The production of disability and abledness. New York: Palgrave MacMillan. Carlson, B., Day, M., and Farrelly, T. (2021) What works? Exploring the literature on Aboriginal and Torres Strait Islander healing programs that respond to family violence. ANROWS. Available at: https://apo.org.au/sites/default/files/resourcefiles/2021-06/apo-nid313176.pdf DesLandes, A. et al. (2022) ‘White feminism and carceral industries: Strange bedfellows or partners in crime and criminology?’, Decolonization of Criminology and Justice, 4(2), pp. 5–34. Available at: 10.24135/dcj.v4i2.39 Dhillon, J. K. (2015) ‘Indigenous girls and the violence of settler colonial policing’, Decolonization: Indigeneity, Education & Society, 4(2), pp. 1–31. Available at: https://jps.library.utoronto.ca/index.php/des/article/view/22826 Disability Without Poverty. (2022) Available at: https://twitter.com/Disability_WP/ status/1608493245792649218?s=20 Dlamini, N. J. (2021) ‘Gender-based violence, twin pandemic to COVID-19’, Critical Sociology, 47(4-5), pp. 583–590. Available at: 10.1177/0896920520975465 Dolmage, J. T. (2018) Disabled upon arrival: Eugenics, immigration, and the construction of race and disability. Colombus: The Ohio State University Press. Fitts, M. S. et al. (2022) ‘‘I don’t think it’s on anyone’s radar’: The workforce and system barriers to healthcare for Indigenous women following a traumatic brain injury acquired through violence in remote Australia’, International Journal of Environmental Research and Public Health, 19(22), p. 14744. Available at: 10. 3390/ijerph192214744 Fitts, M. S. et al. (2023) ‘Understanding the lives of Aboriginal and Torres Strait Islander women with traumatic brain injury from family violence in Australia: A qualitative study protocol’, International Journal of Environmental Research and Public Health, 20(2), p. 1607. Available at: 10.3390/ijerph20021607 Fugate, M. et al. (2005) ‘Barriers to domestic violence help seeking’, Violence Against Women, 11(3), pp. 290–310. Available at: 10.1177/1077801204271959 Gaind, S. K. et al. (2023) ‘Open letter to Ministers Lametti (Justice), Duclos (Health), Qualtrough (Disability Inclusion), Bennett (Mental Health and Addictions), & Canadian Ministry (Cabinet)’. Available at: https://static1.squarespace.com/static/ 5e3dcbaafb4d851392a9298f/t/63d469374075ef6609742c76/1674864951975/ EAG+-+2023-01+-+govt+communication+-+FIN.pdf

152

Valérie Grand’Maison and Karen Soldatić

Glenn, E. N. (2015) ‘Settler colonialism as structure’, Sociology of Race and Ethnicity, 1(1), pp. 52–72. Available at: 10.1177/2332649214560440 Grand’Maison, V. et al. (2022) ‘Dys-feminicide: Conceptualizing the feminicides of women and girls with disabilities’, Sociation, 21(1), pp. x–xx. Grech, S. (2016) ‘Disability and development: Critical connections, gaps and contradictions’, in S. Grech and K. Soldatic (eds.) Disability in the Global South: Critical handbook. Cham: Springer, pp. 3–21. Jaffee, L., and John, K. (2018) ‘Disabling bodies of/and land: Reframing disability justice in conversation with Indigenous theory and activism’, Open Access, 5(2), pp. 1407–1429. Available at: www.dgsjournal.org Kafer, A. (2013) Feminist queer crip. Bloomington and Indianapolis: Indiana University Press. Link, B. G., and Phelan, J. C. (2001) ‘Conceptualizing stigma’, Annual Review of Sociology, 27(1), pp. 363–385. Available at: 10.1146/annurev.soc.27.1.363 Link, B. G., and Phelan, J. C. (2014) ‘Stigma power’, Social Science and Medicine, 103, pp. 24–32. Available at: 10.1016/j.socscimed.2013.07.035 Mack, A. N., and Na’puti, T. R. (2019) ‘‘Our bodies are not terra nullius’: Building a decolonial feminist resistance to gendered violence’, Women’s Studies in Communication, 42(3), pp. 347–370. Available at: 10.1080/07491409.2019. 1637803 Masson, D. (2010) ‘Transnationalizing feminist and women’s movements: Toward a scalar approach’, in P. Dufour, D. Masson, and D. Caouette (eds.) Solidarities beyond borders: Transnationalizing women’s movements. Vancouver: UBC Press, pp. 35–55. McRuer, R. (2018) Crip times: Disability, globalization, and resistance. New York: NYU Press. Menjívar, C. (2011) Enduring violence. Berkeley: University of California Press. Mohanty, C. T. (2003) Feminism without borders: Decolonizing theory, practicing solidarity. Durham and London: Duke University Press. Moreton-Robinson, A. (2011) ‘The white man’s burden: Patriarchal white epistemic violence and Aboriginal women’s knowledges within the academy’, Australian Feminist Studies, 26(70), pp. 413–431. Available at: 10.1080/08164649.2011. 621175 Murphy-Oikonen, J. et al. (2022) ‘Sexual assault: Indigenous women’s experiences of not being believed by the police’, Violence Against Women, 28(5), pp. 1237–1258. Available at: 10.1177/10778012211013903. National Inquiry into Missing and Murdered Indigenous Women and Girls (2019) Reclaiming power and place: The final report of the national inquiry into missing and murdered Indigenous women and girls. Volume 1a. Canada: National Inquiry into Missing and Murdered Indigenous Women and Girls. Available at: https:// www.mmiwg-ffada.ca/wp-content/uploads/2019/06/Final_Report_Vol_1a-1.pdf. Oliver, M., and Barnes, C. (2012) The new politics of disablement. London: Palgrave MacMillan. Overstreet, N. M., and Quinn, D. M. (2013) ‘The intimate partner violence stigmatization model and barriers to help seeking’, Basic and Applied Social Psychology, 35(1), pp. 109–122. Available at: 10.1080/01973533.2012.746599 Palmater, P. (2016) ‘Shining light on the dark places: Addressing police racism and sexualized violence against Indigenous women and girls in the National Inquiry’, Canadian Journal of Women and the Law, 28(2), pp. 253–284. Available at: 10.3138/cjwl.28.2.253 Paterson, K., and Hughes, B. (1999) ‘Disability studies and phenomenology: The carnal politics of everyday life’, Disability and Society, 14(5), pp. 597–610. Available at: 10.1080/09687599925966

Stigma as a structure of disablement

153

Piquero, A. R. et al. (2021) ‘Domestic violence during the COVID-19 pandemic Evidence from a systematic review and meta-analysis’, Journal of Criminal Justice, 74. Available at: 10.1016/j.jcrimjus.2021.101806. Puar, J. K. (2017) The right to maim. Durham and London: Duke University Press. Rajan, D. (2011) ‘Women with disabilities and abuse: Access to supports report on the pan-Canadian focus groups’. DAWN-RAFH Canada. Available at: https:// canadianwomen.org/wp-content/uploads/2017/09/PDF-VP-Resource-DAWNRAFH-Canada-Focus-Groups-WWD_201.pdf Razack, S. H. (2000) ‘Gendered racial violence and spatialized justice: The murder of Pamela George’, Canadian Journal of Law and Society, 15(2), pp. 91–130. Razack, S. H. (2015) ‘The body as placeless: Memorializing colonial power’, in Dying from improvement: Inquirests and inquiries into Indigenous deaths in custory. Toronto: Toronto University Press, pp. 29–56. Razack, S. H. (2016) ‘Gendering disposability’, Canadian Journal of Women and the Law, 28(2), pp. 285–307. Available at: 10.3138/cjwl.28.2.285 Robillard, C. et al. (2018) ‘‘Caught in the same webs’—Service providers’ insights on gender-based and structural violence among female temporary foreign workers in Canada’, Journal of International Migration and Integration, 19(3), pp. 583–606. Available at: 10.1007/s12134-018-0563-3 Roesch, E. et al. (2020) ‘Violence against women during Covid-19 pandemic restrictions’, BMJ, 369. Available at: 10.1136/bmj.m1712 Sánchez, O. R. et al. (2020) ‘Violence against women during the COVID
19 pandemic: An integrative review’, International Journal of Gynecology & Obstetrics, 151(2), pp. 180–187. Available at: 10.1002/ijgo.13365 Scheer, J. R., Pachankis, J. E., and Bränström, R. (2022) ‘Gender-based structural stigma and intimate partner violence across 28 countries: A population-based study of women across sexual orientation, immigration status, and socioeconomic status’, Journal of Interpersonal Violence, 37(11–12), pp. 8941–8964. Available at: 10.1177/0886260520976212 Shildrick, T. (2018) ‘Lessons from Grenfell: Poverty propaganda, stigma and class power’, The Sociological Review, 66(4), pp. 783–798. Available at: 10.1177/003 8026118777424 Sisters Inside, and ICRR (2021) ‘The state as abuser: Coercive control in the colony’. Available at: https://www.womenstaskforce.qld.gov.au/__data/assets/pdf_file/0005/ 691340/wsjt-submission-sisters-inside-and-institue-for-collaborative-race-research.pdf Soldatic, K. (2015) ‘Postcolonial reproductions: Disability, indigeneity and the formation of the white masculine settler state of Australia’, Social Identities, 21(1), pp. 53–68. Available at: 10.1080/13504630.2014.995352 Soldatic, K. (2018) ‘Indigenous mothering and disabled children in regional Australia: A narrative study’, in S. Shah and C. Bradbury-Jones (eds.) Disability, gender and violence over the life course: Global perspectives and human rights approaches. London and New York: Routledge, pp. 15–29. Soldatic, K. et al. (2023) ‘Indigenous LGBTIQSB+ people’s experiences of family violence in Australia’, Journal of Family Violence. Available at: 10.1007/s10896023-00539-1 Spagnuolo, N., and Bélanger, J. (2018) ‘An ‘unconscious terrain of habits’: Structural violence against women labelled with intellectual disabilities’, in M. Owen, D. Hiebert-Murphy, and J. Ristock (eds.) Not a new problem: Violence in the lives of disabled women. Halifax and Winnipeg: Fernwood Publishing, pp. 76–96. True, J. (2012) The political economy of violence against women. New York: Oxford University Press. Tyler, I. (2020) Stigma: The machinery of inequality. London: Zed Books.

154

Valérie Grand’Maison and Karen Soldatić

UN Women (2022) ‘The shadow pandemic: Violence against women during the Covid19 pandemic’. Available at: https://www.unwomen.org/en/news/in-focus/in-focusgender-equality-in-covid-19-response/violence-against-women-during-covid-19 Vergès, F. (2019) Un féminisme décolonial. Paris: La Fabrique éditions. Walsh, S. D. (2016) ‘Not necessarily solidarity: Dilemmas of transnational advocacy networks addressing violence against women’, International Feminist Journal of Politics, 18(2), pp. 248–269. Available at: 10.1080/14616742.2015.1008246 Weldon, S. L. (2006) ‘Inclusion, solidarity, and social movements: The global movement against gender violence’, Perspectives on Politics, 4(1), pp. 55–74. Available at: https://www.jstor.org/stable/3688626 Wolfe, P. (2006) ‘Settler colonialism and the elimination of the native’, Journal of Genocide Research, 8(4), pp. 387–409. Available at: 10.1080/14623520601056240. Yakubovich, A. R., and Maki, K. (2022) ‘Preventing gender-based homelessness in Canada during the COVID-19 pandemic and beyond: The need to account for violence against women’, Violence Against Women, 28(10), pp. 2587–2599. Available at: 10.1177/10778012211034202 Media references for composite story creation Boisvert, E. and Brice, R. (2022) ‘Integrity Care and directors charged over death of Adelaide woman Ann Marie Smith’, ABC News. 22 June. Available at: https://www. abc.net.au/news/2022-06-10/integrity-care-directors-charged-over-ann-marie-smithdeath/101142320 Boisvert, E. (2020) ‘SA Police investigating death of woman in ‘disgusting and degrading circumstances’’, ABC News, 15 May. Available at: https://www.abc.net. au/news/2020-05-15/police-investigate-death-of-chairbound-woman-in-adelaide/ 12253326 Campanella, N. and Edmonds, C. (2021) ‘Disability royal commission told of efforts to help Indigenous woman locked away for 20 years’, ABC News. 14 August. Available at: https://www.abc.net.au/news/2021-08-14/disability-royal-commission-hears-ofefforts-to-help-melanie/100372018 Grant, M. (2015) ‘Jessica Hagan killed by her mother Christine, now deceased: police’, CBC News. 31 December. Available at: https://www.cbc.ca/news/canada/calgary/ jessica-christine-hagan-homicide-cranston-ahs-1.3386060#:~:text=Knowing%20she %20had%20only%20days,had%20recently%20died%20of%20cancer. Henriques-Gomes, L. (2020) ‘People with disabilities suffer ‘often shocking’ violence, abuse and neglect – Report’, The Guardian. 30 October. Available at: https://www. theguardian.com/australia-news/2020/oct/30/people-with-disabilities-suffer-oftenshocking-violence-abuse-and-neglect-report Henriques-Gomes, L. (2021) ‘Violence was ‘normal’ at Victorian disability group home, royal commission hears’, The Guardian. 9 December. Available at: https://www. theguardian.com/australia-news/2021/dec/09/violence-was-normal-at-victoriandisability-group-home-royal-commission-hears Henriques-Gomes, L. (2021) ‘Threat of ‘cruelty, violence’ against SA disability care resident not investigated for three years’, The Guardian. 7 June. Available at: https:// www.theguardian.com/australia-news/2021/jun/07/threat-of-cruelty-violence-againstsa-disability-care-resident-not-investigated-for-three-years Loewen, C. (2019) ‘Montreal man who killed wife with Alzheimer’s gets 2 years in jail’, CBC News. 27 May. Available at: https://www.cbc.ca/news/canada/montreal/ michel-cadotte-alzheimers-wife-jocelyne-lizotte-sentencing-1.5151545 Lowrie, M. (2019) ‘Jocelyne Lizotte’s sons tell court killing of their ailing mother was no act of compassion’, Global News. 08 March. Available at: https://globalnews. ca/news/5035751/quebec-alzheimers-ailing-woman-death-trial-michel-cadotte/

Stigma as a structure of disablement

155

Nerestant, A. (2021) ‘Racism, prejudice contributed to Joyce Echaquan’s death in hospital, Quebec coroner’s inquiry concludes’, CBC News. 01 October. Available at: https://www.cbc.ca/news/canada/montreal/joyce-echaquan-systemic-racismquebec-government-1.6196038 SBS News (2022) ‘Around 30 per cent of Australian children impacted by domestic violence have a disability’, 22 September. Available at: https://www.sbs.com.au/news/ article/around-30-per-cent-of-australian-children-impacted-by-domestic-violencehave-a-disability/u8fk0whiy Wright, E. (2022) ‘Abuse of people with disability in public places at the centre of this week’s DRC hearing — a topic many Australians know all too well’, ABC News. 10 October. Available at: https://www.abc.net.au/news/2022-10-10/abuse-violencein-public-disability-royal-commission/101513590 Wright, E. and Edmonds, C. (2022) ‘Disability royal commission examines conditions inside Supported Residential Services’, ABC News. 3 September. Available at: https://www.abc.net.au/news/2022-09-03/disability-royal-commission-on-victoriasupported-residentials/101396120 Wright, E., Timms, P., and Young, E. (2022) ‘The disability royal commission heard shocking evidence of abuse in public spaces this week. These were just some of the stories’, ABC News. 15 October. Available at: https://www.abc.net.au/news/202210-15/disability-royal-commission-abuse-harassment-in-public/101527752

9

Coloniality, disability, and the family in Kurdistan-Iraq M. Lynn Rose

Introduction People with disabilities are a substantial part of the Kurdistan-Iraq demographic. The World Health Organization estimates that 15% of the world’s population is disabled and that 80% of people with disabilities live in low- and middle-income countries (WHO, 2021). Because of constant warfare, Iraq has an even higher percentage of people with disabilities (IOM, 2021). When we consider not only physical disability but also cognitive, psychiatric, and other invisible disabilities, 15% is a low estimate. In fact, the UN Committee on the Rights of Persons with Disabilities reported in 2019 that “Iraq has one of the largest populations of persons with disabilities in the world” (OHCHR, 2019). While the population of Kurdish people with disabilities has received some attention as a humanitarian concern, there has been very little disability studies scholarship on Kurdish disability. One’s identity and belonging are key to understanding the meaning of Kurdish disability. In their study of disability and rurality in the global South, Johnson and Soldatic (2017) write that “belonging is a complex concept involving an attachment to a place, relationships with others, a sense of safety, common values and a shared and/or developing history. Belonging is also an internal sense of being at home in one’s own body and mind” (pp. 245–246). Kurdish existence hinges on belonging to an extended family, which determines one’s primary identity and life course. For both people with disabilities and nondisabled people, the extended family network locks in a lifetime of security but locks out substantial interaction beyond the family, and the penalty for not belonging to a family is harsh. This defensive system also locks in traditional gender roles, for which disabled girls and women—and some men—are often deemed unfit. One of the interviewees observed that “for most disabled people in our country, their place is the house! Only!” Historical background Kurdistan-Iraq, a semi-autonomous region since 2009, presents a complex set of circumstances regarding disability, especially in terms of identity and belonging in relation to its historical past. The Kurds are a diverse ethnic DOI: 10.4324/9781003280422-10

Coloniality, disability, and the family in Kurdistan-Iraq

157

group. Stateless Kurds are the fourth-largest ethnicity of the Middle East. Along with the national languages of the countries they live in, they speak Kurdish, part of an Indo-European and Indo-Iranian language family in which Kurmanji and Sorani are two main dialects. The Kurds have always been on the fringes of the official historical record and subject to, defined by, and often betrayed by neighbouring powers. Early Kurdish identity is speculative and shadowy, as it is for most nomadic groups. The Kurds have spent most of their history as nomads, in which family systems, clans, and tribes were, and remain, fundamental. In the pre-Islamic period, the ancient Mesopotamian region witnessed, among others, the ancient Sumerian, Akkadian, Babylonian, Assyrian, Neo-Babylonian, Persian, and Sassanid civilisations. The origins of the Kurds within this time are conjectural. The Kurdologist Ferdinand Hennerbichler (2012) explains that the cuneiform tablets included the word Karda, which could indicate the existence of the Kurds in this region as early as the 21st century BCE. The Kurds are also tenuously connected to the Medes of the second and first millennia BCE (Bois, 1966; Hennerbichler, 2012). Their possible early existence continues along in relation to better documented powers—the Persian Empire, the Hellenistic world, and the Roman Empire. The first sure historical evidence of Kurdish existence comes with Arab expansion in the 7th century CE, though as Özog
lu (2004) points out, even then we cannot “accurately trace the origin of these legends and to make bold statements about the meaning of the word ‘Kurd’” (p. 41). Even when they are part of the historical record, the Kurdish role is peripheral to the dominant narrative. Kurdish identity depends, and has always depended, on the tribal system, as Van Bruineseen (2002) outlines. As nomads, the extended family system, clans, and tribes played a pivotal role in constructing, promoting, and exploiting community weaknesses, and various colonisers used this system to control the Kurds. In this system, the tribal or clan leaders are the heads of the clan to whom the entire clan swears allegiance. These leaders are not simply political leaders; they are also religious and spiritual guides and mentors. In a strong tribal system, the members’ tribal allegiance overshadows their allegiance to the country and even to the dominant religion. Kurdish communities’ structures are hierarchical pyramids, maintaining deep-rooted patriarchal dominance. The bottom layer consists of common people who live a collective life, work for a collective cause, and model collective honour and pride. The second layer is the family system, of which every individual is part, following what the family head decides. The family head is comparable to the Roman paterfamilias, where the father reigns supreme in each extended family. Next is the clan leader, the ultimate paterfamilias of the entire domain, to whom every family head swears allegiance. In this system, patriarchy prevails, honour is always connected to women, and obedience is foundational. Clan leaders tend not to cooperate with other clan leaders. There is no equivalent of the Roman pater patriae, or patriarch of the entire domain, and herein lies vulnerability to outside forces.

158

M. Lynn Rose

We can see an example of this vulnerability during the Battle of Chaldiran between the Ottomans and the Safavids in 1514. The Kurds had to decide whether to side with the Ottomans or the Safavids. Instead of considering Kurdish unity, each clan leader wanted to preserve his status. Depending on the offer from the Ottoman leader Selim I or the Safavid leader Shah Ismail I, some clan leaders decided to join the Ottomans and others, the Safavids (McDowall, 2004). This incident divided the Kurds, breeding distrust among each other. Rivalry between Kurdish tribes is alive and well; modern Kurdistan-Iraq is an outcome of contemporary tribal rivalry, and colonialism only increased the value of maintaining a strong clan. Van Bruinessen (1991) traces the development of Kurdish tribal structures and the complications of clan loyalties in the face of nationalism. The rivalry between tribes has been affecting the Kurds since the middle of the 20th century. These “neo-tribal entities” (Kennedy, 2015, p. 2) can be seen in two prominent Kurdish leaders, Mustafa Barzani and Jalal Talabani, who have carried out decades-long tribal feuding. When Jalal Talabani was negotiating with the president of Iraq, Abdul Salam Arif, Mustafa Barzani tried to undermine the negotiations, as he wanted to be the sole leader of the Kurds. He hurriedly signed a deal with Abdul Salam Arif (McDowall, 2004). The rift between these two continued until they went their separate ways, and the PDK—the Kurdistan Democratic Party—was divided into two parties. In 1975, Jalal Talabani formed a new political party, the PUK (Patriotic Union of Kurdistan). The Kurdish clan system was, and is, itself a micro-colonial system. Although the clan leaders cooperate with colonisers and oppressors, they prefer to retain their own autonomy and power to control their public over cooperating with other clan leaders or recognising a supreme leader. Salzman (2008) characterises the historical tribal system as an integral, even inevitable, part of socio-political fabric of the Middle East, though it is important to heed the warning of Ahmad and Soleiman (2019) that tribes and tribalism are neither “inert facts of nature” nor a “cognitive malfunction of Kurdish mindset”, descriptions that, they argue, justify colonialism by setting out tribalism as outmoded opposition to modernisation (p. 1815). It should also be noted that Kurdish tribalism is weaker than it was a few decades ago, as Bozarslan and Gunes (2021) note. Tribalism alone does not explain Kurdish identity, nor is there one Kurdish identity; still, it is safe to generalise that the clan and family system is a key part of Kurdish identity, that maintaining identity is especially crucial when one is not recognised as a nation, and that the system is patriarchal. The extended family system uses its extreme power to protect and promote patriarchal traditions. The anthropologist Diane King, writing about “social and symbolic life”, concludes that the patrilineal system not only secludes women but also robs them of agency (2013, p. 2). All of this has implications for understanding the concept of disability and the place of people with disabilities in Kurdistan.

Coloniality, disability, and the family in Kurdistan-Iraq

159

Methodological approach The interviews

As mentioned, NGOs have paid a fair amount of attention to people with disabilities in Iraq and Kurdistan-Iraq. Several collections of interviews help explain disability in the humanitarian context, especially as it intersects with gender and with poverty (HI, 2020; Women’s Refugee Commission, 2015), but there are few if any extensive interviews with the aim of recording everyday life of people with disabilities as a cultural phenomenon and as part of the record of oral history. As a small start to fill this gap, in the spring of 2020, I designed a research class in oral history for 21 undergraduate students at the American University of Iraq, Sulaimani. The students had an overview of disability studies, learned the methods and ethics of conducting semi-structured interviews, and formulated the interview questions. After receiving Institutional Review Board approval, designing supplementary consent scripts, and receiving signed consent from the participant, each student spoke with one person with a disability, making an audio recording. The interviews consisted of open-ended questions and lasted for a minimum of two hours. Because this project began at the advent of the COVID pandemic lockdowns, many of the interviews were carried out virtually. The students also learned about secure storage of the records, using double encryption. They learned that all the names of the interviewees would be changed, and all the identities protected. The students transcribed and translated the interviews. After the initial transcription, “filler” words such as “um” were removed, and grammatical mistakes of translation were corrected unless pertinent to the meaning. Of the 21 interviewees, 10 were male and 11 female; 10 were married and 11 were single. Birth dates ranged from 1938 to 2002; education ranged from illiterate to postgraduate. Their impairments were physical, cognitive, psychiatric, sensory, speech, and combinations thereof.1 Models from disability studies

In order to contextualise the information about disability in the Kurdish extended family system, I use models from the field of disability studies, which has coined several terms that let us understand the meanings of disability as they shift from one time and place to another. The medical model and the social model are good explanatory tools, especially in terms of the caveats that we must understand when using them as lenses for any given community in the global South. The contrasting medical model and social model were developed at the advent of disability studies, in the 1980s, to explain perspectives about disability. In the realm of the medical model, there are two categories of people: disabled and normal. Disabled people are broken: their disability is the problem and the reason that they are broken. In the medical model, in

160

M. Lynn Rose

other words, disability is caused by the impairment, whether the impairment is physical, cognitive, or psychiatric. In general, the lives of people with disabilities in Kurdistan-Iraq are shaped by the medical model, in which the locus of the problem resides in the individual disability. There is very little evidence in Kurdistan of the social model, in which society is responsible for fashioning the environment so that impairments disable community members minimally. Ableism The medical model’s mechanism is ableism. Just as sexism, the more familiar term, is the belief that one sex is inherently better than the other—usually that men are inherently better than women—ableism is the belief that disabled people are worth less than nondisabled people. Ableism, like sexism, manifests in daily experience and institutionalised systems. Ableism takes many forms, including architectural, attitudinal, and legal. Architectural ableism is expressed anywhere the principles of universal design are ignored, such as flights of stairs without the option of ramps. Sham, when asked what was accessible, responded, “Nothing. Nothing like that in Kurdistan. There are no buses, there is no school. You cannot see anything like easy access. You cannot find it in Kurdistan”. Our interviewees had no shortage of examples of architectural ableism when they thought back to their school days. Rozh says that although people were kind, “all of my friends and neighbours treated me as their child or brother”, the lack of accessibility prohibited him from attending school. Because of the lack of equipment for disabled people, like wheelchairs, I could not go out too much. And also, because of the same reason, I could not go to school. I could not start studying when I was a child: the architecture of the school was not helpful for a disabled person and my first grade was on the second floor of the school, which was impossible for a disabled person to attend. That is the reason that makes me say that disability had a negative interaction in my life. Because Ari also lacked both a wheelchair and accessible classrooms, his father carried him on his back to his classrooms for five years. He points out that not all parents are willing or able to do this. Most public places are blatantly inaccessible, which limits the ways in which people with disabilities can participate in family activities, one of the most important of which is the all-day, multi-family picnic. Lana points out that the simple absence of accessible toilets curtails her participation, “When I go to a picnic with my children, there is no flushing toilet for me, which makes me sad and I have to come home early”. Lana also notes that “there is no elevator in many places for disabled people. We need an elevator because we cannot go on the stairs. Whenever I want to go anywhere, I have to go on

Coloniality, disability, and the family in Kurdistan-Iraq

161

the stairs, which really hurts my legs”. Transportation, too, is difficult. Masti notes that the government officials in charge of public transportation “have not done anything for people who are impaired of mobility; the buses we have are those that were used in the ’80s and ’90s, so only people who are not impaired of mobility can use public transportation”. Rozh adds that “sometimes when I want to use a taxi, they see I am in a wheelchair and they do not stop to pick me up; this is another issue that faces us”. Attitudinal ableism can multiply the inhospitality of an inaccessible environment. Our interviewees had no trouble remembering attitudinal ableism in their youth. Raz says, “I suffered a lot in my school. It was hard, because other children cannot understand [disability]. My childhood was the hardest part in my life”. Sham, too, remembers that “my childhood was miserable. School was very hard. Very hard. Limping, and pain, and no one supported us”. Schools are breeding grounds for attitudinal ableism, perpetuating it so that it is part of adulthood. Mohammed tells us that as an adult, “I got bullied by a store manager, and actually he kicked me out and said ‘your face looks creepy’”. He says that the most significant barrier in his life is that “I am always seen as a negative person with some sort of creepiness in me”. Pity is as disabling as disgust. “Pity is so dangerous”, says Rebaz. Masti explains: In our society, when someone is disabled, he or she is seen differently. People’s speech has had effects on me, surely. When you are in a society and you are surrounded by people who think in the same way, they see you differently because of your disability. Most of the time they feel sorry for you. They sometimes do something for me because I am [disabled], not because I am a human. Legal ableism is also a factor that stems from and perpetuates the medical model. There is no proper implementation of laws and policies regarding people with disabilities. Iraqi Law 38 (Protection Law for People with Disability and Special Needs, passed in 2013) and Kurdish Law 22 (The Law of Rights and Privileges of Disabled People and Special Needs in the Kurdistan Region, passed in 2011), while somewhat paternalistic, guarantee rights for disabled people. In addition, Iraq signed the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities) in 2013 but never implemented it. The UNCRPD is not paternalistic, but includes western concepts of disability inclusion that may not be palatable to Kurdish society. On translating the UNCRPD principles into practice, Grech (2016) observes that “the ‘inclusion’ of disability in development seems to highlight more of a forced absorption rather than a wilful, informed, and committed embrace” (loc. 572). He goes on to discuss the lack of “willingness and capability to include disabled people in earnest and on their own terms” (loc. 579). This willingness will not develop in any society that exemplifies the medical model.

162

M. Lynn Rose

The alternative to the medical model, with its institutionalised ableism, is the social model. From the perspective of the social model, the problem is the environment, not disability. An impairment—any sort of impairment—is disabling, or not, according to the cultural context. In a supportive environment, people with impairments are not disabled by barriers. Rozh defines a supportive environment as “providing an environment that does not prevent me to do anything I want. For example, when I go to a governmental agency that serves everyone in the country, I do not want to make anyone help me up the stairs; instead, I want a path that I can easily go through with my wheelchair”. He adds that “the main barriers I face daily are when I go somewhere and the design of the place is not supporting me to do what I want to do”. The caveats in using the social model to understand the global South are both important and enlightening. The concepts behind the social model were developed in the West and result from a disability rights movement steeped in notions of individual liberty, personal independence, and a responsive government. In addition, the social model assumes a rejection of elements such as charity. Staples and Mehrota (2016) point out that because disability is so dependent on context in the global South, it is important to engage “without being trapped in webs of theory spun largely for western, industrialised contexts, and the particular civil rights struggles they were formulated to assist” (loc. 1725). Extended family interdependence An important component of the social model is the independent living movement in the US, wherein disabled people gained the ability to live their own independent lives rather than being warehoused in nursing homes and other institutions. Another important movement assumed in the social model is the deinstitutionalisation of people with psychiatric disability, expressed in Mad Pride in the UK. In Kurdistan, by contrast, with extremely few exceptions, anyone who requires care receives it within the extended family. There is very little warehousing of people, next to no homelessness, and it is rare for anyone—disabled or nondisabled—to do anything but transfer from the natal family to the marital family. When we think about the social model in the global South, we must consider the socio-cultural milieu of the family and of interdependence rather than independence. As we have seen, belonging to an extended family is a key element of being Kurdish. The security of belonging can be a buffer against hardships such as poverty, war, and rival families, but traditional Kurdish family roles have narrow parameters, and the family structure does not allow for much variation in thought or expression. Hanar observes that “due to the collectivist society we live in—I mean, Iraq is a pretty collectivist society—people act like each other; they are all similar. They have the same tradition, the same habits, the same … everything”.

Coloniality, disability, and the family in Kurdistan-Iraq

163

Belonging to an extended family network, no matter how stifling, can mean emotional and even physical survival for disabled children. Zinah remembers a difficult childhood because of bullying from other children, This tormented and hurt me. But my family helped me and motivated me to be stronger, confident, and happy, and they helped me to ignore any negative thoughts and things and they made me feel that I am a normal person like them. Hama also remembers a difficult childhood, with only his family supporting him, “Back when I was young, the situation was very bad. We did not have anything, the environment was absolutely terrible, there was no accessibility, and no one came and helped me besides my family”. With few external social supports, spouses can shape the emotional quality of life for disabled people. Sarko says that his wife “looks at me as a normal person and she treats me so well. She helps me and I help her”. Kawa defines happiness as “the time when I go out with my wife and make her smile. I love my wife and she does whatever makes me happy. She does not even go outside until she receives my permission”. Kawa’s wife was hardwon; because of his disability, he had to give his sister in marriage to his wife’s family, and he had to pay for both weddings. “But I did not give up until I married her”. Family members can determine one’s physical quality of life. Lana, who became disabled later in life, was sad when she gave birth to girls, but her husband “explained that ‘girls are soft and nice to their parents and will help us when we become old’. He was right, now my girls help me more than my boy”. One of her daughters, after she had the accident, “took me to her home and served me a lot. She washed me and my clothes and took me to the hospital to see my doctor with her car. I was really happy and comfortable”. Two other daughters help her “by giving me money and sending medicine to me”. Now widowed, she says, “I am afraid of staying alone at night because I am an old woman. I may have a heart attack or I may fall down and no one will know. That is why I do not like to stay alone”. The family obligation to care for all its members with no outside help is not all roses. Sewe, herself disabled, describes caring for her disabled husband in this extended family milieu, His brothers help me out sometimes; they take him to doctors. They will take him to the swimming pools, because I cannot go to men’s swimming pools. I mean they really help me. Still, it is a challenge, as the disability affects not just the person himself; it will affect all the people around him. He cannot do anything by himself; he needs someone to be with him almost always. For example, going to the bathroom, taking a shower, and eating food. I mean, we have to interact with him just like a small child. If you do not put his shoes on,

164

M. Lynn Rose

he will not be able to do it for himself, or if you do not put his pants on for him, he cannot do it by himself. It is not easy when you have a patient in the house. You will not have a normal life. Families can do harm, and there is not much escape. Mohammed tells us: I grew up as a lonely child and the community was a very violent one. Well, my position in the community was that I was seen as a lower person, so yes, my childhood was a dark picture since you could say the community was full of violent crime. My home was a refugees’ house; the house had four families, and my school was the public one, and we used to get beaten by our teachers, and the neighbourhood was a very terrible place to live in … . Everyone was making fun of me and so I really had my dreams scattered in front of my eyes and everything was rough. My family did nothing; they actually made fun of me. Zhwan narrates her experience of sexual abuse from within the extended family, I was like four, five, and then between my first and second year [of school] we were visiting some family’s houses. Some relatives. In that summer, I kinda got molested like two or three times by different people, and I think I did not know that it affected me. Identity and community Sewe says, “My disability is everything that I am; everything that I am made of is my disability”. Along with the caveat of the interdependent extended family, we also have to consider the interrelated ideas of identity and community when thinking about the social model in the global South, including Kurdistan. One’s primary identity is formed and determined by one’s family. Disabled children are often kept hidden at home, out of shame or fear. Families with deaf children rarely learn sign language, but instead (if anything) develop their own system of signs that are exclusive to the family.2 If they even start school, disabled children often drop out, because of bullying and because there are few accommodations. In this atmosphere, there is little chance for disability identity, disability pride, or disability community. This also means that the community as a whole—including the disabled people—remains uneducated about disability. Tara wishes that the disability organisations were more visible, “because if there is an organisation that names a disability, then other people will understand more”. Masti says that “people around me, and I, do not know much about my impairment”. Kardos, too, tells us that he noticed his physical differences when he was four years old but never asked his parents about it. About the causes of his disability, he says, “I swear I do not know if it is genetic or

Coloniality, disability, and the family in Kurdistan-Iraq

165

something else. I had a brother who died while I was still in my mom’s belly. So, my mom was struck with grief; maybe that caused my condition”. Masti says that there is no place to teach disabled people about disability. People are not taught to have knowledge about disabled people. Also, the TV, the Mullahs, and the teachers do not teach people about it. People do not have any great awareness of disability. I really do not like that. Lana also expresses the need for community education, “I think our society still needs to be more educated on how to treat people with special needs and disabilities”. Kawa expresses the need for a community of people with disabilities, but points out the inaccessibility that prevents this, “Life means having a place for disabled people to hang out and have fun. We do not have any [accessible] parks. We need them to go have picnics”. Government and charity Along with independence and identity in the social model of disability, another assumption behind the western construct is that of a receptive, dynamic government. In Kurdistan’s extended family and tribal system, government forces resemble the ultimate paterfamilias, if not the pater patriae, albeit a dysfunctional father in this era of crisis, mismanagement, and instability. In the absence of government support, the mechanism that keeps people alive is charity. Hama says that “disabled people have been the least served layer in our community”. Rozh says that “if I could change anything, I would change the way that the government treats disabled people. Most of us are angry at the government and the way they behave towards us”. People who are deemed sufficiently disabled by a panel of medical experts receive a tiny government pension every month, although often the amount is cut by about 25%, and sometimes the distribution is cancelled altogether. The assessment of being disabled enough to collect the pension can be reversed. “There are people who do not have a hand, or an eye”, says Sarko, “and their salary was fully cut off. For example, my relative has only one eye, and they cut off his salary. So, they help you when you are in a wheelchair and have about 60% to 70% of a disability, and say that you deserve that 150,000 IQD [about 100 USD]. Otherwise, even if you are 50% disabled, they say you are not disabled. What is disabled, then?” Luna also says, “I could barely live and buy my medicine. [The government] provides a little money monthly for those who are disabled and can’t work. But it is not enough. That is why we can see lots of disabled people selling things on the street”. Indeed, disabled beggars or sellers of tissues and chewing gum are a fixture of the busy intersections in Kurdish cities. The procedure to collect the pension is arduous, given the absence of an electronic system. People go to crowded and inaccessible places to collect

166

M. Lynn Rose

their pension in cash, although by the time their name is called, there might not be any cash left for the day. Recently, three elderly people died while waiting to collect their pensions, and about a week later, a disabled man set himself on fire in protest or frustration (NRT, 2022). People with disabilities have staged organised protests, but the result is the same as it is for any protest; the government agents say they will look into the matter and fix everything … and then they do not. Sarko says of protestors, “No, they are never listened to, and the government does its own thing. They listen to you, but they do not do anything”. Some people with disabilities suggest that in order to make effective changes for future disabled people, there must be a mass sacrifice; disabled people should refuse their pension, refuse their medicine, and die in order to make a point. Other people have given up on getting attention from the government now or in the future. Medicine is free of cost, in theory but not in practice. Basic medical care is available, but many medicines and medical procedures, especially the expensive ones, are not covered. People with Thalassemia, a genetic blood disorder common in the Middle East, need medicine and procedures simply to survive, but most are exorbitantly expensive and have ceased to be covered by government funds. Instead, the Thalassemia Society, whose members and directors themselves have Thalassemia, focuses on the goal of eradicating Thalassemia, which, as they recognise, has a disconcerting ring of eugenics. In this atmosphere, another consideration of the medical/social model paradigm must be the place of charity. Rozh says that it is the private organisations that “provide us equipment that is necessary for disabled people, and financially they do help us”. Sarko adds: It has been 20 years and I did not get anything, even a small crutch from the government. Disabled people’s lives are too hard, and the government does not do anything. Only the organisations help. Things like wheelchairs, crutches, and other things only provide profit for businessmen. Out of a hundred people only two might be able to buy them. They only have them as donations from some organisations. The medical model is sometimes called the charity model, because charity in the West intermingles with pity and consumerism, which, as Goodley and Swartz (2016) point out, reflects an emphasis on understanding disability through labour and capitalism. This universalist approach to disability, they argue, is not useful. Grech (2016) reminds us, “Western medical professionals imported charity and the European specialised institution” (p. 11). Charity in Kurdistan is, with some exceptions, a feature of Islamic society; indeed, charity is a pillar of Islam, and giving aid to disabled people is laudable and respectable, prompting lavish social media praise by disability activists for private donors while also providing a platform to critique the government for its failure to serve the basic needs of disabled citizens. This is not to suggest that wealthy capitalists perpetuating a system of people

Coloniality, disability, and the family in Kurdistan-Iraq

167

perceived to be dependent because of their disabilities is a healthy situation, only that the mechanism of charity does not closely resemble that of the global North. Gendered ableism Kurdish disabled women are subject to both ableism and sexism. The extended family system assures that the result is exponential, not simply double. Kurdish men and women are links in a chain of family identity more than they are individuals. Kurdish females in traditional families provide these linkages by being first a daughter and “house girl” who tends the house and serves guests, and then a wife and mother in their marital family. There are parallels between the Kurdish outlook and the Ancient Greek notion of an honourable woman’s sphere being so markedly cloistered that she should not speak nor should she be spoken of—and it goes without saying that she should not be seen. Females carry the family honour, which can be threatened by being too visible. Lana says that some people saw her acquired disability as divine punishment for going out too much, Some people visited me when I was unable to move, and I heard them saying that I deserve this because I was going and coming a lot. They said that I always went shopping, and to picnics and parties. Some people said that I would never be able to move again. Hanar says, Iraq, as you know, is a patriarchal society, always in favour of men; men are the deciders. Let us talk about boys. Boys are the ones who have more freedom, they go out, they do whatever they want, they make their own choices, women are always in a subordinate place, they are … let us say they are subjects to man. Raz points out that “it is difficult because a girl can easily be affected even because of a word! That is why I was afraid to achieve anything I want”. Intersectional oppression is prevalent all over the world; women anywhere are less likely to be heard. Ableism makes it even less likely that disabled women’s voices will be heard, especially if the disability affects speaking or the voice. Recently, a woman in Sulaimani with speech disfluency was refused permission to draw her own money out of her own bank account on the basis of the misunderstanding that she would be unable to manage that money. Deaf people in Kurdistan are usually shut out of any conversation, given the problems with the dearth of sign language education, and women who are deaf are even more prone to being shut out. Another example of intersectional oppression can be seen in the women with visible or obvious disabilities who are stripped of their main role

168

M. Lynn Rose

as females—as wives and mothers—and in any heavily patriarchal society, this is a real and meaningful deprivation. Disabled women are often thought unfit to marry, or worthy of marrying only an older or infirm man, or expected to put up, and gratefully, with an abusive husband. Sham tells us that her first marriage failed, and her interviewer asked her why. Yes, I am telling you the reason. In the beginning I was just at home because of my sickness. I was living with pain. I was the only person doing everything. My ex was working and he never helped. And he was telling me, ‘Why are you not working? What you are doing at home—cooking, cleaning—this is nothing. You should work.’ And I was telling him, ‘How can I go to work when my brain is full of pain?’ When people live with pain, they do not have a brain to think. My whole life was full of pain. So, it all damaged my life and I failed. He left me because my leg got shorter, and I was limping a lot. For him, it was a shame to be with a woman with a sickness. Not surprisingly, women tend to hide their disability. Sham says, “I never told anyone that I have bad pain. I was killing myself with myself”. Psychological or psychiatric disability is especially stigmatising. Hanar says that “there is always a stigma, and the stigma of depression is clearer when women are depressed because they are always accused by the society of, let us say, doing something wrong that caused them to be depressed”. Lana observes that “here in our society, we feel ashamed of seeing a psychiatrist because people say that you have become mad; that is why you go to see a psychiatrist”. Lana goes on to express the importance of seeking help, Actually, for people with disabilities, seeing a psychiatrist is very important for their mental health and happiness. We need to talk to someone aloud about our fears and feelings. Yes, I feel that I need to go to a psychiatrist to overcome my fears of death and being alone. Zhwan, mentioned above as having been sexually abused by family members, echoes this: I was 18, and started to go out with my friends, despite the challenges at home for me going out but one day I was with my best friend in the bazaar, and she talked about her experiences, and by this time I had learned English and learned a lot about depression and anxiety, and when she talked about her experience about being molested, something clicked. Later, I read that when something bad happens, your brain puts it in a room, locks the door, and the key is just one word, or an image, or a smell, and if you encounter it, it will unlock the door.

Coloniality, disability, and the family in Kurdistan-Iraq

169

Many interviewees told us that they were very happy to speak about issues around which they usually have to stay silent. Sham ended her interview by saying, “Maybe my heart was full and that is why I am talking so much”. It is not unusual that girls with significant mobility impairments are given hysterectomies, with or without their consent, so as to save the caregiver from dealing with menstruation. It also prevents disabled women from passing on their disability to their offspring—there is widespread misunderstanding about what is hereditary and what is not. In the same way, women with significant psychiatric disability are also given hysterectomies in order to prevent reproduction, as are intellectually disabled girls and women, who are thought to be less able to defend themselves against rape, thus impregnation.3 Conclusion While pervasive and persistent poverty is certainly a contributing factor, no amount of money will fill the gaps in the quest to overcome ableism and sexism. The Kurdish government, like any government, is not a monolithic force. Legal implementation, or lack thereof, reflects the will of society at large, and unless there is enough social will to give teeth to the laws, little will change. Education at all levels, for disabled and nondisabled people, is needed to make a shift away from the medical model. There is reason for hope. Many disabled people have resisted internalising stigma, pity, and paternalism, and there is disability pride in Kurdistan-Iraq. Tara says, “Life means my disability. It is beautiful, and it is my fate”. Disability advocacy organisations, founded and run by disabled people in Kurdistan, work to educate their communities. Ari says that “my disability was a university for me before university. I love it; I really love it”. While in its earliest infancy, disability studies are making its way into some curricula. As Rebaz says, “Some people are sitting at home right now, and they can reprogramme the whole system in this country”. Indeed, Johnson and Soldatic (2017) conclude, from their study on global disability, that only a community working together can effect a real change. Notes 1 I thank AUIS students Andesha Ibrahim, Aya Abbas, Bauan Hardi, Imran Kawkab, Kale Ali, Kozhin Tahir, Lavin Abdulrahman, Meer Mahmood, Mirvan Majeed, Mera Bakr, Rahel Mahmood, Raz Abdulla, Rawand Mustafa, Reyam Ali, Riyam M. Noori, Saya Abdulrahman, Shanyan Kaka Hama, Shatw Ahmed, Shewa Faqe Muhammed, Zainab Ahmed, and Zhira Hassan. 2 There is very little by way of Deaf culture or identity in Kurdistan; therefore, I use small-d deaf. 3 Gendered disability oppression is not exclusive to females, of course: see David Serlin (2017).

170

M. Lynn Rose

References Bois, T. (1966) The Kurds. Beirut: Khayats. Bozarslan, H., and Gunes, C. (2021) ‘Tribes and their changing role in Kurdish politics and society’, in H. Bozarslan, C. Gunes, and V. Yadirgi (eds.) The Cambridge history of the Kurds. Cambridge: Cambridge University Press, pp. 581–600. Goodley, D., and Swartz, L. (2016) ‘The place of disability’, in S. Grech and K. Soldatic (eds.) Disability in the Global South. New York: Springer. Grech, S. (2016) ‘Disability and development: Critical connections, gaps and contradictions’, in S. Grech and K. Soldatic (eds.) Disability in the Global South. New York: Springer. Grech, S. (2016) ‘Decolonialising Eurocentric disability studies: Why colonialism matters in the disability and Global South debate’, in K. Soldatic and S. Grech (eds.) Disability and colonialism. New York: Routledge, pp. 6–21. Hennerbichler, F. (2012) ‘The origin of Kurds’, Advances in Anthropology, 2(2), pp. 64–79. HI (Handicap International/Humanity & Inclusion) (2020) ‘Barriers to accessing services for persons with disabilities in Basra Governorate Iraq’. Available at: https://www.humanitarianresponse.info/sites/www.humanitarianresponse.info/ files/assessments/barriers_to_accessing_services_for_persons_with_disabilities_in_ basra_go.pdf. Johnson, K., and Soldatic, K. (2017) ‘Conclusion’, in K. Soldatic and K. Johnson (eds.) Disability and rurality. New York: Routledge, pp. 244–249. IOM (International Organization for Migration). (2021) ’Persons with disabilities and their representative organizations in Iraq: Barriers, challenges, and priorities’. Available at: https://iraq.iom.int/sites/g/files/tmzbdl1316/files/documents/OPDs %20report%20English.pdf (accessed 2 January 2024). Kennedy, B. A. (2015) ‘The Shaikh’s Republic: The Kurdish regional government’s incorporation of tribalism’, Politics Honors Papers, 3. Available at: https:// digitalcommons.ursinus.edu/pol_hon/3 King, D. (2013) Kurdistan on the global stage: Kinship, land, and community in Iraq. New Brunswick: Rutgers. McDowall, D. (2004) A modern history of the Kurds. 3rd edn. London: I. B. Tauris. Mohammadpour, A., and Soleiman, K. (2019) ‘Interrogating the tribal: The aporia of tribalism in the sociological study of the Middle East’, British Journal of Sociology, 70(5), pp. 1799–1824. doi: 10.1111/1468-4446.12656. NRT. (2022) ‘Disabled man sets himself on fire while waiting in line for benefits in Kalar’, 29 March. Available at: https://nrttv.com/en/detail6/2966 OHCHR (UN Office of the High Commissioner for Human Rights) (2019) ‘Committee on the Rights of Persons with Disabilities discusses the impact of the armed conflict on persons with disabilities in Iraq’. Available at: https://www.ohchr.org/en/press-releases/ 2019/09/committee-rights-persons-disabilities-discusses-impact-armed-conflict Özog
lu, H. (2004) Kurdish notables and the Ottoman state. Albany: State University of New York Press. Salzman, P. C. (2008) ‘The Middle East’s tribal DNA’, Middle East Quarterly, 15(1), pp. 23–33. Available at: https://www.meforum.org/1813/the-middle-easts-tribal-dna Serlin, D. (2017) ‘Introduction’, in K. M. Brian and J. W. Trent (eds.) Phallacies: Historical interactions of disability and masculinity. Oxford: Oxford University Press, pp. 1–21. Staples, J., and Mehrota, N. (2016) ‘Disability studies: Developments in Anthropology’, in S. Grech and K. Soldatic (eds.) Disability in the Global South. New York: Springer.

Coloniality, disability, and the family in Kurdistan-Iraq

171

Van Bruinessen, M. (1991) Agha, shaikh, and state: The social and political structures of Kurdistan. London: Zed. Van Bruineseen, M. (2002) ‘Kurds, states and tribes’, in F. A. Jabar and H. Dawod (eds.) Tribes and power: Nationalism and ethnicity in the Middle East. London: Saqi, pp. 165–183. WHO (World Health Organization) (2021) ‘Disability and health’. Available at: https://www.who.int/en/news-room/fact-sheets/detail/disability-and-health Women’s Refugee Commission (2015) ‘Building capacity for disability inclusion in gender-based violence programming in humanitarian settings’. Available at: https:// gbvresponders.org/wp-content/uploads/2015/06/Building-Capacity-for-DisabilityInclusion-in-Gender-Based-Violence-Programming-in-Humanitarian-Settings-v2.pdf

10

Raising children with autism in a patriarchal society of a new liberal state Experiences of mothers of autistic children in Bangladesh Sharin Shajahan

Introduction Autism or autism spectrum disorder (ASD) refers to a broad and diverse range of neurodevelopmental conditions that create non-normative social behaviour, speech and language, and communication. In an inherently “ableist” world where discrimination and social prejudice against disabled people are normalised, children with autism are considered to be burdens and concerns for a family and the state. Such discrimination is more profound in underdeveloped and developing countries that strive hard to fit into the new global liberal framework. This new framework, often referred to as neoliberalism in western accounts of neoliberalism, considers able-bodied citizens as “ideal selves” for their capacity to compete in the market economy without much, if any, social support from the state. The patriarchy that proceeded neoliberalism binds autism with misogyny and disability stigma, a unique form that perpetuates the historical patriarchal gender division of labour and gendered discrimination. One of the heinous effects of patriarchal power on autistic children is expanding stigmatisation towards their mothers for giving birth to so-called “disordered and unwanted bodies”, making autistic children’s mothers fully responsible for them. Bangladesh is a country in desperate need to prove itself as a fast-growing developing nation through the neoliberal approach. Despite having remarkable success in implementing gender equality, it is still struggling to overcome ageold patriarchal values that define the experience of motherhood for disabled children. Stigmatisation of autism including shaming and blaming mothers of children with autism happens according to the social and economic understanding of having a “burdensome” person in a family and society (Ria, 2021; Soron, 2015). Not only are autistic children perceived to have excruciating demands for care, time, and resources that are not adequately addressed by the state, but also their “disorders” are shaped by the patriarchal myths of making mothers responsible for their children’s conditions. The social welfare ministry of Bangladesh estimates that only a few hundred are being medically diagnosed among 1.4 million people with autism (Laden, 2021). A survey in 2018 by the Institute of Paediatric Neuro-disorder and DOI: 10.4324/9781003280422-11

Raising children with autism in a patriarchal society

173

Autism of Bangabandhu Sheikh Mujib Medical University found that 17 in every 10,000 children in Bangladesh have the condition of autism (Dhaka Tribune, 2018). This survey also found that children with autism are higher in the urban areas than in the rural parts. One of the important reasons for this difference can be the lack of diagnosis in rural areas due to inadequate medical service and low awareness. Having the Assessment of Autism and Neurodevelopmental Disorders in 2016, National Strategic Plan for Neurodevelopmental Disorders 2016–2021, and the establishment of the autism resource centre and the Institute of Paediatric Neurology and Autism show government’s interest in coming up with policy and plan to support people with autism. Since 2009, physiotherapy, occupational therapy, counselling, assistive devices, and other related services have been expanded in different areas of Bangladesh. However, considering the huge need for quality service, these services are not enough. In general, state support in Bangladesh for disabled children and their family members is considered to be not sufficient (Nuri et al., 2020). Government service for autism is not beyond this limitation. Only 15 of the government medical colleges in Bangladesh have child development centres of their own that can provide services to children with autism (Akhtar, 2021). There is a lack of enough specialised doctors, therapists, and caregivers in the government-run hospitals and centres. Inadequate state-supported medical support for autism has paved the way for privately run centres for therapy and schools that are mainly located in urban and semi-urban areas. As a result, good quality service provision is confined to particular urban areas and is expensive, only affordable for the upper and middle class (Ehsan et al., 2018). A vast group of people who are from lower economic class remains dependent on limited state-run hospitals and centres that are not enough, convenient, and fast in delivering service. This class dimension remains a distinguishing feature of service for autism in Bangladesh revealing the relationship between income inequality and health inequality in a neoliberal state. However, for middle-class people, the cost of private service can be high. In absence of state support, the dominance of markets and profit-making intention behind health services can make the middle class crushed by the rising cost of health care, schools, and therapy for children with autism. One study based on Dhaka city says that around 41% of mothers look after their children diagnosed with autism without any help, while 59% of mothers get help from maids, spouses, and family members only who are not even trained (Moral, 2019). This additional support comes from the mother’s financial capacity to afford maids and connection family members and spouses. This finding indicates how mothers are individually responsible for taking care of their children with autism without any institutional state support. In this context of lack of effective care infrastructure, mother’s challenges become extremely difficult, giving extraordinary amounts of time and care to children with autism.

174

Sharin Shajahan

Autism is a comparatively under-researched topic in the context of Bangladesh, especially when it comes to the challenges of mothers of children with autism. In recent years, autism has been a topic of government attention and discussion in social media including social media blogs by some mothers. However, perspectives of mothers of children with autism are not yet analysed in relation to economic and social structures. In this chapter, I will situate mothers’ experiences of raising autistic children within the intersectional realities of gender and class in Bangladesh. By using qualitative data from interviews and social media research, I will link the narratives of mothers with a neoliberal state’s approach to autism and a patriarchal society’s impactful role in shaping mothers’ experience with their children with autism. Patriarchy and neoliberalism: An unholy alliance for mothers of autistic children In a patriarchal society, the responsibilities for caring are ascribed on the basis of gender (Traustadottir, 1991). Mother’s caring is often considered as the representation of family care for disabled individuals in a family (Baines et al., 1991; Gerson, 1998; Leslie et al., 1991). This division persuades mothers of disabled children to withdraw from their professional commitments or reduce working hours to give more time to care work (Martin, 1996). Although discrimination against disabled people is well recognised, discrimination and stigma against mothers often remain hidden (Home, 2002). It was found that once a child was diagnosed with autism, the mother’s experience of motherhood became changed (Matenge, 2013). As parents, mothers are often overwhelmed with “caregiver syndrome” or “caregiver stress” or burnout that includes exhaustion, anger, rage, or guilt that results from providing extraordinary attention to the ongoing demands of a dependent individual (Bilgin and Kucuk, 2010; Killian, 2008; Lawton et al., 1991). Mothers of autistic children need family, social, and mental health support to deal with a variety of challenges in everyday life. Lack of social and family support for children with autism has been known to result in the development of mental health problems for the mothers (Al-Kandari et al., 2017; Boyd, 2002). Thus, mother’s support cannot be effective, inclusive, and affordable without strong support from the state. In Bangladesh, mothers of children with autism are frequently blamed for giving birth to children with impairments. Mother blaming existed as a discourse in relation to autism in the 1950s and 1960s. Kanner (1949) and Bettelheim (1967) championed the refrigerator mother theory – an idea that autism is an emotional disorder that is developed because of the lack of mother’s care and emotional attachment. In 2011, an article suggested that women who were in male-dominated careers, like science, engineering, and mathematics, and chose partners from the same background and this partnering might be likely to create biological conditions for reproducing

Raising children with autism in a patriarchal society

175

children with autism (Hanlon, 2010). These gendered theories determined dominant narratives around mothers of children of autism with a sense of casting blame on mothers for their children’s conditions. If neoliberalism is conjoined with patriarchy, challenges for mothers of children with autism become more daunting. Neoliberalism is grounded in the principles of competition, inequality, and “governing for the market” (Foucault, 2010, p. 121). As an economic theory, a political philosophy, and an ideology, neoliberal ideas promote the superiority of markets to create and allocate wealth, limited roles of the states to let markets rule, competition, privatisation, inequality, financialisation, valuing individual as human capital, and evaluating all relations in economic cost/benefit terms (Mavelli, 2017). Citizenship under the neoliberal model idealises selfsufficiency and independence while ascribing an inferior status to dependency and care which ultimately leads to increasing the privatisation of care (Aronson and Neysmith, 2001, p. 153). In this profit-making paradigm, disabled people cannot be categorised as projects worthy of monetary investment (McDaniel, 2002). The care and support required by children with autism to thrive are positioned within the neoliberal state as a burden. Claire (2016) noticed that, although liberalism isolates disabled bodies, neoliberalism creates the illusion to prove disabled bodies to be of value and make them productive to some extent where they are forced to create value within the system. The fallacy of neoliberalism appears when it keeps dragging autistic children into an ableist culture and, at the same time, makes the state stay away from the necessary commitments of an inclusive, participatory non-ableist welfare state (Guest, 2003). Over the last decade, Bangladesh has made significant progress in reducing poverty and reached the lower middle-income country status in 2015 (The World Bank, 2019). Although as a state Bangladesh began its journey with the spirit of socialism, gradual implementation of economic policy of neoliberalism with a focus on the free market has transformed the very nature of the state (Khan and Rahman, 2019). Competition, evaluating relations, and human potential on the basis of monetary benefit and inequality have taken the centre of all public and private relations. The government of Bangladesh has ratified the Convention on the Rights of Persons with Disabilities and enacted the Rights and Protection of Persons with Disability Act in 2013 (UNICEF, 2014). Although the government has introduced some social security and support for disabled people in general and private enterprises are coming forward to create inclusive environments for the disabled community including children with autism, barriers coming from the neoliberal agenda remain impenetrable. The stigma associated with disability, lack of access to quality education, enough health and social care opportunities, appropriate infrastructure, and assistive technology make the lives of children with autism marginalised (Ahmed, 2017). In a study, mothers of children with autism in Bangladesh reported high emotional states, shock, depression, self-blame, and sadness (Upoma, 2020). They shared how they

176

Sharin Shajahan

were passing days with depression and frustration. In the context of lack of social and emotional support, prayer became their solace for finding peace. Government’s support for autistic children could reach out to people with lower economic class who have no option other than resorting to state-run service, whereas the middle class and upper class prefer to choose private service due to convenience, smooth and fast access, and delivery and relatively good quality of service. The whole scenario reflects the way Hartmann (2016, p. 2145) illustrates neoliberalism in health care service: Neoliberalism typically refers to minimal government intervention, laissez-faire market policies, and individualism over collectivism [which] has been adopted by—and pressed upon—the majority of national governments and global development institution … neoliberal policies have contributed to the privatisation and individualisation of healthcare, resulting in growing health inequalities. In the context of Bangladesh, people from the lower economic class remain helplessly dependent on the state’s inconvenient and low-quality service; on the other hand, the middle and upper classes chase the private care and health system, spending a huge amount of money. Amidst these two poles of vulnerabilities, the middle class suffers the most, because they seek private service and, at the same time, succumb to the burdens of meeting its high cost from limited income. The public’s perception of autism is considered to be negative in Bangladesh (Laden, 2021). In a society where ableist patriarchal values dictate lifestyle and pressure to be self-sufficient and individually responsible is on the high rise for surviving in the competitive market economy, children with autism are often governed by Michael Oliver’s (1990) “personal tragedy theory of disability” model under which conditions for autism can be considered to be some terrible characteristics that occur to unfortunate individuals. This approach makes the autistic conditions completely personal, pathological, and abnormal in contrast to an able-bodied normal human being who can join the capitalist workforce and adjust to its structured work discipline. In absence of inclusive and quality service from the state, mothers of autistic children remain individually responsible to meet the special demands of the children in education and health care and raise them for an ableist society and workforce. The unholy alliance between patriarchy and neoliberalism becomes excruciating and dehumanising for the mothers from where they find no escape other than silently surrendering to the oppressive structure of power. Method: Combining qualitative and social media research The study adopted a qualitative approach of interviewing eight mothers and social media research to analyse the narratives of mothers of children living

Raising children with autism in a patriarchal society

177

with autism. Mothers who were interviewed have a child with autism aged between 10–15 years old and from the middle economic class. They live in urban areas and have completed higher education. These mothers usually do not take government health care and education service for their children since these services are extremely inconvenient, time-consuming, and not of good quality. Their families and husbands can afford private care of children with autism. However, the financial cost of private care appears burdensome to them. The class dimension of their experience remains evident through their financial struggle and its negative impact on raising children and relationships with husbands. The term social media research infers the research that uses data derived from social media sources (Government Social Research Profession, 2016, p. 6). The idea of using content from social media sites came after coming across some Facebook pages run by mothers of children with autism in Bangladesh. In the last 4 or 5 years, mothers of children with autism have started to be vocal on different social media platforms in Bangladesh. By disclosing their everyday difficulties, challenges, and coping mechanisms, they reveal arduous journeys with their children. Social media has been utilised as both platforms for having useful information regarding parenting, good doctors, therapists, and schools alongside offering social support amongst the mothers of children with autism. The analysis for the social media posts involved a content analysis of the public posts of mothers that are accessible to all as they are readily available. I have followed some Facebook blogs of Bangladeshi mothers who are highly active in Facebook through making videos, creating content, and having live sessions with a live online audience for raising awareness on autism. In terms of public groups on Facebook, I choose the biggest Facebook group “Autism Bangladesh” which has 15 thousand members. I identified mothers’ posts in this group from the 12 months prior (January to December 2021) and reviewed the contents to find insights about their experience over approximately 50 posts. I also reviewed the posts that talk about mothers of children with autism in general and captured the common issues that they addressed. Findings Lack of knowledge on autism

From the narratives of the mothers, a common voice came out – they had no knowledge about autism until their children’s diagnosis. For mothers, the diagnosis of their children with autism was an extremely grief-stricken process and shocking. They also shared a common opinion – the situation would be different if this experience had occurred 4 or 5 years ago since awareness of autism has increased during the last 4 or 5 years due to social media, electronic and print media coverage, and the personal interest of the prime minister and her daughter.

178

Sharin Shajahan

From the interviews, it was found that most mothers or female relatives first noticed unusual behaviour of the child that was later diagnosed as conditions for autism (e.g., no eye contact, problems in communication, etc.). Due to gender stereotyping or perception of a mother’s less knowledge on body and illness, a mother’s early identification of children’s communication problems was sometimes disregarded by family and father. One mother said how she discovered her son’s weak capacity for communication and identified it as a problem to be addressed. But her observation was not instantly valued in the family since the word autism was not familiar to everyone at that time. Fortunately, she found the word “autism” and its characteristics in a book in a nearby library, which eventually gave validity to her claim. She shares that memory: I first found the word in a book in the library near my house. I and my husband read the book together and felt that our son had this condition.1 Later, he was diagnosed and found to have conditions of autism. This shows how little knowledge existed or was imparted in this area at that time (10 years ago). She added that awareness of autism has increased in recent years due to the use of the internet and people’s familiarity with the term. But has the situation completely changed now? In the largest Facebook groups for children with autism in Bangladesh, a common help post that often appears is the description of certain abnormal characteristics of a child with the question “could you please tell whether my child has autism?”. In response, answers keep coming from parents of children with autism, with a variety of opinions. These posts are indicators of lack of awareness and the poor situation of early diagnosis of autism that still needs to be overcome. One mother’s post and answers to her query show a dearth of information and support from a centralised institution or group, which increases the mother’s hard work of getting confirmation about a child’s condition2: My son is three years and eight months. The problems that we are facing are that he usually does not make eye contact with anyone. He cannot speak. He has a phobia for sound, etc. The post ended with an upsetting experience and a heart-wrenching appeal: A few days ago, I took my kid to a centre (anonymous) for a check-up. They gave a follow-up. They advised giving speech therapy. I took him to get therapy. I waited for two hours to get the therapy there. My kid was annoying a lot during that time. Seeing this, the therapist said that first you need to lessen the hyperactivity of your kid, and then you should have the therapy. There are many experienced people in this Facebook group. Can someone please advise me whether my child’s problems are signs of

Raising children with autism in a patriarchal society

179

autism or hyperactivity? The doctor has not told me anything directly about it. But I remain stressed. What should I do? Where can I go for diagnosis? In answering this post, most of the people gave the opinion that these characteristics are signs of autism except a few who said not to worry because these conditions will be fine with time. Some also proposed some doctor’s addresses for consultations. There is no uniformity in referring any doctor or centre. No one raised questions about the long waiting period and lack of transparency in the doctor’s information. Stress, shame, and guilt of the mothers

A very strong myth regarding disabled children including children with autism is that a child with autism is the product of the sin of parents, especially mothers. Mothers somehow carry a deep sense of guilt that is related to this myth. Since they do not have access to any counselling services or are not used to seeking help from professional mental health care, they often resort to religion to deal with stress, shame, and guilt. Sometimes they consider having a child with autism is like a trial or test by God for a higher purpose. Religion becomes a place of great solace for these mothers. The patriarchal myth of shaming mothers and mothers’ deepest scars due to this myth came into the limelight in Bangladesh once a drama was broadcasted in 2021 which perpetuated the stigma around disabled kids. At that time, many mothers of children with autism used social media to protest against this drama and its message. One mother’s public post explained how they live with this deeply rooted prejudice3: You know what is the problem? No matter how much we say that autism is not a product of sin, we believe it. A disabled person is accepted by no one in this country. Those who work with autism and those who have children with autism know how much mental trauma they face. People express empathy in front of us. But behind the back, they might say something like “… a child becomes autistic because his/her parents are bad people”. All faults belong to parents. However, fathers do not have faults. It is the mother who has the fault. People think that if a mother is a good woman, her child cannot have autism. Mothers were always judged and blamed by their in-laws for failure to give birth to abled offspring to the family. In-laws often have high expectations of mothers to be good wives, daughters-in-law, and caring mothers and perfect in managing household affairs. Mothers are not welcome to share their burnout, frustrations, and exhaustion and are encouraged to be supermoms who can meticulously balance responsibilities to in-laws, husband, and the child with autism. Most of the mothers shared

180

Sharin Shajahan

that they were not encouraged to do the job in the excuse of taking care of the children, while their husbands were never questioned for avoiding parental responsibilities towards the child. Mothers often take emotional help from their parents and sometimes even prefer to spend more time in their parents’ house where they can have relatively more rest and support. Unfortunately, a married woman is not accepted to spend longer time in her parent’s house which keeps societal pressure to be with in-laws or husband even if that appears inconvenient and hassle for a woman. One mother wrote in a public post on how patriarchal myth made her life miserable for giving birth to a child with autism4: When R had a diagnosis for autism, my first question to the doctor was why did it happen? The doctor replied that there was no scientific answer. I used to think that perhaps I did not eat well during pregnancy or had stress. That is why it happened to my child. My family convinced me saying that since I was giving so much time to my career, my son is making delays in speech. My in-laws complained that I did not give enough time to my child. That is why the child has got autism. They think we got married without our parent’s choice. That is why my child has got autism. Once one of my in-laws told me that my child’s condition was due to a family lineage of committing sins. I also had to hear that since I became pregnant right after the marriage, my child has become like that. In the end, all faults are mine. In-laws are found to be ahead in blaming and shaming the mother. One woman said jokingly that she is fortunate that her mother-in-law is dead. Otherwise, she might have to face abusive words for her child with autism.5 Mothers know that there will be no support for their children when they will become old. One mother said that they want a care infrastructure and rehabilitation like the one in developed countries which will make the lives of the mothers less stressful and convenient.6 This is a common need among all the mothers in interviews and social media. Their tension and stress keep increasing when they think about the future of their children. Sometimes, parents come together and plan for building an old home where their children can stay in the future. But often that too is shattered due to internal squabbling. Issues of affordability and access to medical service, therapy, and education

Once a child with autism grows up, the mother’s burden increases in the absence of enough affordable centres for therapy, professional caregivers, and special schooling that provide good service. Besides social media posts on seeking advice on the diagnosis of autism, other common help social media posts include asking for recommendations for good doctors, therapists, and

Raising children with autism in a patriarchal society

181

special schools for children. Most of the time, mothers are the ones who keep posting for this type of help. Due to family pressure on mother’s gender roles in raising autistic children, often mothers have to leave their job and become dependent on their husbands for meeting the financial demands of the health care for children. Lack of financial capabilities on the part of mothers becomes an obstacle to getting access to good quality of service for the children. The price of the doctor and service varies depending on the hospital. This poses the question of affordability for parents based on their financial conditions. Facebook posts also show how difficult it is for mothers in rural areas and outside of the capital to find good special schools, therapists, and doctors. Social media posts show that information on good therapists is difficult to get. Many parents stopped taking their children to therapists and centres during the pandemic in fear of getting infected. They preferred online support. This arrangement for online support, although convenient during the pandemic, invites another type of concern for mothers. One mother’s help post in a public group expressed the concern: I used online therapy during a pandemic. But I am afraid my child is getting attracted to mobile phones and computers due to this habit.7 She thinks this habit will harm the child’s mental and physical health. From Facebook posts and interviews, this fear is found to be common among mothers. Very few private or non-government centres were mentioned in the social media posts and interviews for giving good therapy at a reasonable price. One such good centre is situated in Savar. Sometimes, parents have to rent houses near to that centre where mothers and children with autism can stay and visit the centre in the most convenient way. Mothers of low economic backgrounds can also have access to the centre. But this type of centre is rare in Bangladesh. The scarcity of good centres like this one, even in the urban areas, makes the lives of mothers extremely challenging. All the mothers in the interviews said that their children could not have access to quality education in normal schools like other children. Although the government has a plan for inclusive education for children with autism, their policy will take time to be implemented. Parents often need to look for special schools for their children. In most cases, these schools are private enterprises with little government support and no uniform pedagogy and good training of the staff. The geographical location of the schools is a big issue for mothers since most of the good special schools for disabled children are located in Dhaka. However, even mothers in Dhaka have difficulties in terms of enroling children with autism in special schools that are good, since not necessarily their preferred schools are in the nearest locations from homes. Sometimes families have to shift their accommodation to be near the special school where they would like their child to be enroled. Some special schools charge a good amount of money with the promise to improve the

182

Sharin Shajahan

capacity of the children. But that does not work in reality in the way it is advertised. Mothers feel frustrated to see their children not improving or not getting good service from special schools. In general, mothers are not satisfied with the business approach of the special private schools. In one of the Facebook public posts, one mother asked: Do they (special private schools) think that we are millionaires? They are charging 40,000 takas for the admission fee and 11,000 takas for the monthly fee. What do you think about it? In response, more than 80 comments were posted supporting her and complaining about the high cost of special private schools. They also expressed disappointment at having no access to normal schools. In response to this post, comment by another mother said: I have stopped schooling my child because of the high cost. We (me and my husband) both are government officials. Even somehow, we managed to pay the high cost, the result of going to a special school is zero (the child had no improvement). I have decided to teach my child at home. The same frustration was found in an interview with a mother8: … I kept changing schools following the social network and reviews of other people (friends, ex-schoolmates). Schools do not keep them for long hours. Ultimately, the responsibility is on mothers to supervise the child in learning. A child is kept in a school only for a few hours. Mothers expect to have longer hours in the schools, which can give them some peace and time for their own. Even if a child is in school, a mother needs to be alert about the possibility of sudden illness of the child in school. In this emergency case, it is the parents, especially the mother, who have to make necessary arrangements to take the child to the doctor. It was not a rare incident when mothers were even charged for sending their ill children to school and causing “inconvenience” to others. Transport to the school is another difficulty for mothers. Mothers who do not have private cars need to use public transport for taking their children to school. Most of the time, public transport remains overcrowded. This creates immense difficulties and hassles on the way. Mothers with well-off economic backgrounds can afford private transport or buy private cars to take their children to school. That definitely increases the cost of schooling for the child, with an increased social and economic burden on a family. None of the mothers took help and assistance from state-run medical services, therapy, and special schools on regular basis. They have resorted to public hospitals a few times but have experienced inconvenience, long

Raising children with autism in a patriarchal society

183

queues to get appointments, and low quality of service. That turned them away from the public medical service even if it was cheap. One mother recalled how the staff of a public hospital misbehaved with her and her child.9 When she protested, she was judged and accused as an insane woman. Now she always takes service from private ones that appear to be extremely extensive. Most of the mothers agreed that due to lack of monitoring and surveillance, private enterprises take advantage of the family by overcharging, prescribing unnecessary tests and excessive medicine. However, there are some NGOs who are coming forward to assist the mothers by setting up schools and therapy centres at reasonable prices. But those organisations are not very well supported by the government and donors and suffer from a funding crisis in providing quality service. Lack of social acceptance of children with autism

Mothers shared that although at some point they developed acceptance and patience for their children, society never wants to accept them the way they are. They are not welcome in social gatherings, marriage ceremonies, or even in birthday parties of other children of relatives, friends, and neighbours. Sometimes mothers also withdraw from social gatherings and visit relatives in disappointment, shame, and grief. Even if they can leave their children at home for sometimes, they do not want to go outside for social interaction. They feel stressed that their children are not taken care of properly in their absence. If the child is a girl, the mother’s tension escalates in fear of sexual abuse which she might never be able to resist. In rural areas, this insecurity results in another form of abuse of children with autism. Sometimes children with autism in those areas are found to be chained for their hyperactivity. In those areas, mothers with less education, no income, and social networks become completely helpless to protect their children from this abuse from family and community. Besides family and social gatherings, children with autism are not properly treated in public spaces including government offices where they have to go for having necessary documents, like a passport or National ID card. Again, it is always the mother who accompanies them in such places and accepts others’ insult, irritation, and harsh behaviour at their children. Most of the government offices are not well equipped to give appropriate support to children with autism. Many times, staff loses patience while giving them information or delivering service. There is no proper adequate training among the staff of these institutions to deal with children with autism. Pressure to make children with autism improve, speak, or write sounds quite high on mothers. The online webinar and the tendency of the school to create a competitive culture around this expectation are evident. Use of the words like “Maximising speech in my child during pandemic”10 for the webinar shows parents’ interest in improving children’s speech. Referring to how this pressure is being normalised, one mother shared in a Facebook public post11:

184

Sharin Shajahan

I feel so shocked to see that some mothers of special children give a strange or disturbing look at my son’s behaviour. They think that I did not take good therapy for my child. The constant reminder of a society that a child with autism is not good enough makes the lives of mothers and children with autism socially isolated. Discussion The study draws upon the experiences of mothers of children with autism who were educated and from the middle class. These findings were complemented by data from social media that addressed mothers’ experiences in general. The challenges that they shared and revealed are mostly embedded in the middle-class experience of dealing with the high cost of private services, care, and schooling and patriarchal culture in their family and society. The shocking amount of guilt, shame, and hatred that are ascribed to mothers of children with autism and perception of autism as a personal tragedy have patriarchal ableist cultural roots and influence from neoliberal competitive culture. Shaming and blaming mothers of children are related to a context where children with autism receive an extreme level of inconvenience and exclusions in access to education, social acceptance, and financial support and become a burden for their family for the high cost of having therapy, medical service, and specialised schools. Caring for a child with autism is overwhelming for mothers when there is poor service for disabled children in general (Gobrial, 2018). My findings confirm how daunting a task it can be for a mother to take care of a child with autism in absence of care infrastructure and strong state support. Mother’s experience shared in social media and interviews unearthed the need for affordable care infrastructure and education and therapy for children with autism. State services for children with autism including schools and therapy centres appear to be not so effective due to inconvenience, lengthy procedures, and distant locations (not all government-provided services and centres are located in the nearest destination from home). Privately owned schools and therapy centres are mainly business-oriented and require high costs. This high cost becomes a burden for middle-class families. Mothers were found to be stressed and worried thinking about rehabilitation and caring for the children when they will no longer be capable of giving care to their children (e.g., when mothers become older or become ill). Besides, in a patriarchal societal setting, mothers are made guilty of bringing inconvenience and burden to the family. Mothers also internalised this shame and guilt and thought themselves to be the only person who could take care of the children. Competitive culture and privatisation under neoliberalism and patriarchal culture of stigma and unpaid care work around a child with autism have

Raising children with autism in a patriarchal society

185

roles to play in this stress. Neoliberal and patriarchal influences on state and dominant narratives on autism make mothers individually responsible for taking care of the child. There is a strong pressure and expectation to make the children with autism improve and perform well with therapy, giving care and time and support from different instruments. Competitive culture, high financial burden, and mother’s worry out of this culture reflect that the logic of the market and competition and short-term thinking are everywhere in the societies where neoliberalism is most dominant (Clawson, 2008, p. 207). In this study, it can be noticed that the aim of a neoliberal state is to transform children with autism into customers for a consumerist, market-oriented culture and encourage privatisation of care and service. Whereas the patriarchal notion of gender division of labour makes the mother primary caregiver and responsible for children’s wellbeing. Mothers are left without any institutional and mental health support that could make their lives more productive and purposeful. Based on their economic class and conditions, these vulnerabilities and marginalisation can vary and are in more serious forms. Conclusion Social exclusion, unusual care work, shame, and lack of governmentsupported care infrastructure make the lives of mothers miserable to raise children with autism. Mothers’ narratives enable us to better understand the feelings of mothers with children with autism in the context of structural barriers resulting from neoliberal approach to disability in general and patriarchal values on gender, motherhood, and care work in Bangladesh. Despite enormous grief and disappointment that a child’s condition brings in a mother’s lives, mothers find positivity and love in their experiences of raising children with autism in unfriendly social and family environments. They are found to be vocal and expressive to let people know about their grievances and in raising voice against patriarchal myth of shame and blame of autism in general. In recent years, parents of children with autism have come forward to share their grief-stricken experiences in social media, and a number of government and non-government NGOs have joined in raising awareness. The prime minister of Bangladesh has shown personal interest to create inclusive society for children with autism and remove stigma around this condition (Salim, 2018). Media has also given coverage to the issues of children with autism. Although late, discussion on how mothers of children with autism face stigma and lack family support has taken a small space in public forums (Dhaka Tribune, 2020). Understanding the mothers’ experiences of caring for children with autism is of utmost importance for improving state support and developing infrastructure and awareness that are urgently needed in Bangladesh. Care infrastructure and support for children with autism should be developed, going beyond the private business model and with full state

186

Sharin Shajahan

support. This support system and infrastructure should be holistic, inclusive, and accessible to all, regardless of their class, location, and financial conditions. Gender-based awareness programme and interventions should address the unequal distribution of labour and care work in family and patriarchal myths on motherhood and autism. There should be both personal and collective mental health and counselling service for mothers, families, and the community to accept the conditions of autism positively. It is necessary that the mothers and their children with autism should have opportunities and felt to be supported for fulfilling and prosperous lives. Notes 1 Interview taken on 8/12/2020. 2 https://www.facebook.com/groups/autismbangladesh/https://www.facebook.com/ groups/autismbangladesh/permalink/4563382523748986/ 3 https://www.facebook.com/groups/autismbangladesh/permalink/412349150440 4759/ 4 https://www.facebook.com/groups/autismbangladesh/permalink/4127696617317 581/ 5 Interview taken on 24/11/2021. 6 Interview taken on 18/12 2021. 7 https://www.facebook.com/groups/autismbangladesh/permalink/317271325614 9260/ 8 Interviews taken on 24/11/2021. 9 Interview taken on 26/1/2022. 10 https://www.facebook.com/groups/autismbangladesh/permalink/293975863944 4724/ 11 https://www.facebook.com/groups/autismbangladesh/permalink/164918723183 5211/

References Ahmed, S. U. (2017) ‘Situation analysis of autistic children’, The Independent, 17 April. Available at: https://m.theindependentbd.com/arcprint/details/40798/201604-17 Akhtar, S. (2021) ‘Specialist management of children with autism can make all the difference’, The Daily Star, 2 April. Available at: https://www.thedailystar.net/ opinion/news/specialist-management-children-autism-can-make-all-the-difference2070473 Al-Kandari, S. et al. (2017) ‘Brief report: Social support and coping strategies of mothers of children suffering from ASD in Kuwait’, Journal of Autism and Developmental Disorders, 47, pp. 3311–3319. Aronson, J., and Neysmith, S. M. (2001) ‘Manufacturing social exclusion in the home care market’, Canadian Public Policy, 27(2), pp. 151–165. Baines, C., Evans, P., and Neysmith, S. (1991) ‘Caring: Its impact on the lives of women’, in C. Baines, P. Evans, and S. Neysmith (eds.) Women’s caring: Feminist perspectives on social welfare. Toronto: McClelland and Stewart, pp. 11–35. Bettelheim, B. (1967) The empty fortress: Infantile autism and the birth of the self. New York: The Free Press. Bilgin, H., and Kucuk, L. (2010) ‘Raising an autistic child: Perspectives from Turkish mothers’, Journal of Child and Adolescent Psychiatric Nursing, 23(2), pp. 92–99.

Raising children with autism in a patriarchal society

187

Boyd, B. A. (2002) ‘Examining the relationship between stress and lack of social support in mothers of children with autism’, Focus on Autism and Other Developmental Disabilities, 17, pp. 208–215. Claire, B. (2016) ‘The biopolitics of disability: Neoliberalism, able nationalism, and peripheral embodiments’, Disability and Society, 31(8), pp. 1148–1150. Clawson, D. (2008) ‘Neo-liberalism guarantees social movement unionism’, Employee Responsibilities and Rights Journal, 20(3), pp. 207–212. Dhaka Tribune (2018) ‘Child autism rates twice as high in urban areas, survey reveals’, Dhaka Tribune, 12 July. Available at: https://www.dhakatribune.com/ health/2018/07/12/child-autism-rates-twice-as-high-in-urban-areas-survey-reveals Dhaka Tribune (2020) ‘Mothers of autistic children facing countless adversities’, Dhaka Tribune, 29 August. Available at: https://www.dhakatribune.com/bangladesh/2020/ 08/29/mothers-of-autistic-children-facing-countless-adversities Ehsan, U. et al. (2018) ‘Confronting autism in urban Bangladesh: Unpacking infrastructural and cultural challenges’, EAI Endorsed Transactions on Pervasive Health and Technology, 4(14), p. 155082. Foucault, M. (2010) The birth of biopolitics: Lectures at the Collège de France, 197879. Translated by G. Burchell. Basingstoke: Palgrave Macmillan. Gerson, K. (1998) ‘Gender and the future of the family: Implication for the postindustrial workplaces’, in D. Vanney and P. Dubeck (eds.) Challenges for work and family in the twenty-first century. New York: Aldine de Gruyter. Gobrial, E. (2018) ‘The lived experiences of mothers of children with the autism spectrum disorders in Egypt’, Social Sciences, 7(8), p. 133. Government Social Research Profession (2016) ‘Social media research guidance; using social media for social research’. Available at: https://www.gov.uk/government/ publications/social-media-research-guidance-using-social-media-for-social-research Guest, D. (2003) The emergence of social security in Canada. 3rd edn. Vancouver: University of British Columbia Press. Hanlon, M. (2010) ‘Is the changing role of women in our society behind the rise in autism in the past 30 years?’, Daily Mail. 23 November. Available at: https://www. dailymail.co.uk/sciencetech/article-2064834/Is-changing-role-women-society-riseautism-past-30-years.html Hartmann, C. (2016) ‘Postneoliberal public health care reforms: Neoliberalism, social medicine, and persistent health inequalities in Latin America’, American Journal of Public Health, 106(12), pp. 2145–2151. Home, A. (2002) ‘Challenging hidden oppression: Mothers caring for children with disabilities’, Critical Social Work, 3(1). Kanner, L. (1949) ‘Problems of nosology and psychodynamics of early infantile autism’, American Journal of Orthopsychiatry, 19(3), pp. 416–426. Khan, M. T., and Rahman, M. S. (2019) Neoliberal development in Bangladesh: People on the margins. Dhaka: The University Press Limited. Killian, D. (2008) ‘Helping ill it hurts? A multimethod study of compassion fatigue, burnout, and self-care in clinicians working with trauma survivors’, Traumatology, 14, pp. 32–44. Laden, S. (2021) ‘World autism awareness day 2021: An inclusive approach is the way forward’, New Age. April 4. Available at: https://www.newagebd.net/article/134342/ world-autism-awareness-day-2021-an-inclusive-approach-is-the-way-forward Lawton, M. P. et al. (1991) ‘A two-factor model of caregiving appraisal and psychological well-being’, The Journals of Gerontology, 46, pp. 181–189. Leslie, L., Anderson, E., and Branson, M. (1991) ‘Responsibility for children: The role of gender and employment’, Journal of Family Issues, 12(2), pp. 197–210. Martin, L. (1996) The influence of parent gender on division of work in families with disabilities. PhD thesis. Iowa State University. Available at: https://dr.lib.iastate. edu/entities/publication/6c4fd0ca-e094-4a5d-9fc4-473fed8b5e46

188

Sharin Shajahan

Matenge, B. (2013) An exploration of the lived experiences of mothers raising children with autism. Thesis. University of Cape Town. Available at: http://www. health.uct.ac.za/sites/default/files/image_tool/images/117/Batetshi.Matenge.pdf Mavelli, L. (2017) ‘Governing the resilience of neoliberalism through biopolitics’, European Journal of International Relations, 23(3), pp. 489–512. McDaniel, S. A. (2002) ‘Women’s changing relations to the state and citizenship: Caring and intergenerational relations in globalizing western democracies’, Canadian Review of Sociology and Anthropology, 39, pp. 125–150. Moral, S. (2019) ‘Mothers of autistic children face severe mental pressure’, Prothomalo. 26 November. Available at: https://en.prothomalo.com/bangladesh/ Mothers-of-autistic-children-face-severe-mental Nuri, R. P. et al. (2020) ‘Exploring access to government-led support for children with disabilities in Bangladesh’, PLoS One. 2 July. Available at: https://journals.plos.org/ plosone/article?id=10.1371/journal.pone.0235439. Oliver, M. (1990) The politics of disablement. London: Macmillan. Ria, S. A. (2021) ‘The determination of a mother’, Dhaka Tribune. 21 June. Available at: https://www.dhakatribune.com/opinion/op-ed/2021/06/21/op-edthe-determination-of-a-mother Salim, I. (2018) ‘PM: Don’t neglect people with autism’, Dhaka Tribune. 3 April. Available at: https://www.dhakatribune.com/bangladesh/2018/04/02/pm-standpeople-autism Soron, R. T. (2015) ‘Autism, stigma and achievements of Bangladesh’, Journal of Psychiatry, 18(5). Available at: https://www.walshmedicalmedia.com/open
access/ autism
stigma
and
achievements
of
bangladesh
2378
5756
1000320.pdf The World Bank (2019) ‘The World Bank in Bangladesh’. Available at: https://www. worldbank.org/en/country/bangladesh/overview#1 Traustadottir, R. (1991) ‘Mothers who care: Gender, disability and family life’, Journal of Family Issues, 12(2), pp. 211–228. UNICEF (2014) ‘Situation analysis on children with disabilities in Bangladesh’. Available at https://www.unicef.org/bangladesh/media/2046/file/SA-disablity%20report.pdf Upoma, T. F. (2020) ‘Mothers initial challenges having children with Autism Spectrum Disorders in Bangladesh’, Bangladesh Journal of Medical Science, 19(2), pp. 268–272.

11

Disability discourse and Muslim student organisations in Malang, Indonesia Slamet Thohari, Titi Fitrianita, and Ucca Arawindha

Introduction According to Hasnain, Shaikh, and Shanawani (2008), the discourse of disability has been rarely discussed in studies on Islam. However, many areas in Islamic teachings explore in detail how the community is required to support those who are physically unable. Islam, for instance, allows Muslims to pray while seated or lying down if their physical condition(s) make standing impossible. A fundamental Islamic teaching that has been largely disregarded is that God does not judge people based on their physical prowess but rather on their level of faith and piety. Islam offers justifications and pillars for the protection of the equal rights of people with disabilities in society (Al-Aoufi, Al-Zyoud, and Shahminan, 2012; Bazna and Hatab, 2005). However, according to Miles (2000), research on how Islamic views on disability affect Muslim practice has gotten little attention. According to Al-Aoufi, Al-Zyoud, and Shahminan (2012), there is a research gap between Muslim life practices and Islamic teachings. Following that, this chapter will show how the Islamic teachings they understand affect their understanding of a person’s disability. This chapter will look into how the Islamic student movements in Indonesia, the country with the world’s largest Muslim population, understand disability and how they perceive Islam and disability. One way to ensure that Muslim societies in Indonesia respect the rights of people with disabilities is to investigate how they perceive Muslim student organisations and disabilities for they actively promote and introduce Islamic teachings that emphasise inclusion. Religious organisations play an important role in ensuring the well-being of their followers and providing resources for the prevention and improvement of mental health (Chatters, 2000). Religious organisations in Indonesia have been recognised for their contributions to social change. The role of religious organisations in promoting the inclusion of people with disabilities, on the other hand, has received little attention. Despite their significant role, it is almost certain that all political parties in Indonesia, as well as all major Islamic mass organisations, are influenced by and affiliated with Muslim student organisations. Furthermore, DOI: 10.4324/9781003280422-12

190

Slamet Thohari et al.

many Islamic parties and mass organisations use these organisations as their ideological bases (Cahyono, 2003; Machmudi, 2008). Method This qualitative research is supported by quantitative descriptive data. In line with Forman et al. (2008), the preliminary data were obtained through direct in-depth interviews with respondents, observations, and archives and documents. Additionally, we distributed a questionnaire to the members of the aforementioned Islamic student movements. The direct observation was conducted by visiting their basecamps and studying several documents provided by respondents such as photographs and archives. The in-depth interview was selected as a technique to get the groups’ narration and worldview of the Islamic perspectives on disabilities. Interviews with several organisational officials at the regional level or coordinators of universities have been conducted. These organisations are HMI, KAMMI, IMM, and PMII. Islam and disability discourse Bazna and Hatab (2005) argue that Islam is an inclusive religion. By tracing the Islamic teachings written in the Qurán, they state that the teachings of Islam truly support an inclusive society for people with disabilities. For instance, in the holy Qur’an, as explained in Surah Abbasa when Prophet Muhammad was entertaining some guests from the Quraysh tribe, a man with visual impairment named Abdullah bin Umi Maktum was among the guests. Abdullah wanted to meet the Prophet to learn about Islam, but Prophet Muhammad was surly and ignored him. God immediately gave a warning for the actions of the Prophet. Abdullah bin Umi Maktum later became one of the companions of the Prophet and he was even tasked by Prophet Muhammad to carry the duty of doing the call for prayer (muadzin). The Qur’an, the main source of law in Islam, contains several special words specifically to identify someone with a vision impairment. The word “a’ma” in the Qur’an derives from “amiya” which means “unable to see”. There are at least 32 a’ama/amiya words in the Qur’an. The word a’ma was chosen as a diction because it was felt to be more subtle. There is another word that has the same meaning, which is dhariir, which means that there is no vision. In fact, almost all the words deriving from a’ama in the Qur’an suggest some type of spiritual impairment as their meaning aims to identify a person who is unable to comprehend the signs of God’s glory. That is, those who cannot see, hear, or respond to spiritual guidance are not able to recognise the unique differences in God’s creation (Bazna and Hatab, 2005; Mahalli, 2019). There are only three verses where a’ama has the specific meaning of “unable to see through the eyes of sight and vision”; even in these three verses, the Qur’an provides utterances not to discriminate against persons with disabilities.

Disability discourse and Muslim student organisations

191

As illustrated in the Surah An-Noor verse 61, the postulate that Islam is inclusive for persons with disabilities is also found in Surah Al-Fath verse 17 stating that disabled and not disabled are the same, occupying the same position under God’s protection (Bazna and Hatab, 2005, pp. 5–27) These teachings in the Qu’ran suggest that cultural differences might play an important role in shaping people’s understanding, attitudes, and mindset toward people with disabilities. Islam unmistakably teaches people to treat persons with disabilities as equals. As discussed above, Islam has given examples of equality in the Qur’an and hadith (prophetic tradition). There is a contradiction between the perspective of Islam and local culture which is often triggered by social shame that leads to social exclusion (Al-Aoufi, Al-Zyoud, and Shahminan, 2012). Thohari’s work (2011) explores the concept of disability in Javanese socio-cultural constructions. The disabled are described as magical persons having special powers. However, it had practically been challenged by Islamic teachings practiced by the Muslim society in which disability is represented as an object of charity. Thohari argues that Islam makes a major contribution to shaping the views and behaviour of persons with disabilities. In addressing persons with disabilities as an object of pity, for instance, it is very prevalent for people to go to nursing homes (panti) and special boarding schools to share alms (sedekah), expressing their pity to the vulnerable groups (mustadlafin), including the disability community. The narrative of Islamic teachings describes the disability community as people belonging to a vulnerable group who need help. Many establishments of nursing homes for people with disabilities are primarily motivated by Islamic teachings to help people in a charitable way. Considering the results of several aforementioned studies, the practice of disability inclusion in a Muslim society, such as in Indonesia, needs further research. The discussion below attempts to uncover how Islamic teachings influence and shape people’s perspectives on disabilities and how they are manifested in the actions and treatments towards people with disabilities, especially those who declare themselves as part of the Islamic movements. Muslim student organisations in Malang Islamic student movements have emerged in many universities in Malang. Although religious movements are classified as extra-campus student organisations, many students are members of them, both Islamic- and non-Islamic-based. The following four Muslim student organisations are the largest in Malang, and possibly in other cities as well: HMI, IMM, KAMMI, and PMII (Nila, 2021). The Muslim Student Association (HMI) was established on 5 February 1947 in Yogyakarta, with Lafran Pane as its founder (Kartakusumah, 2016). It aimed to defend the Indonesian Republic, improve Indonesian society, and uphold Islamic teachings in society (HMI, 2023). In Malang, HMI was established in 1951 by M. Ichsan, who is

192

Slamet Thohari et al.

currently a lecturer at the Universitas Negeri Malang (HMI Komsas UM, 2017). HMI has been growing massively in Malang, with seven universitylevel commissariat coordinators, and the members are actively involved in politics on campuses and religious activities. The organisation also equips its members with leadership skills to be involved in political parties, socioreligious organisations, academics, and any others roles in society (Akbar, R. Personal Interview, July, 10, 2018). Unlike the other Islamic student organisation, which was established in the 50s, the establishment of the National Front of Indonesian Muslim Students (KAMMI) was initiated in the Universitas Muhammadiyah Malang.1 It began with a gathering of university-level da’wah (missionary) organisations from all over Indonesia, sharing the idea to form a group that would work to create an Indonesian state based on Islam (Rosyad, 2006). KAMMI has a vision as a permanent forum that will create a generation of leaders to realise the Islamic nation of Indonesia. This vision was then translated into several missions (Immanudin, F. Personal Interview, June, 14, 2018). In Malang, KAMMI has the most members compared to other Islamic organisations. They dominate the current political affairs in the big universities, including Universitas Brawijaya and Universitas Negeri Malang. Their members also manage to take control of the campus’ mosques and Islamic activities. Therefore, KAMMI plays a crucial role in Indonesian politics and student movements in response to government policies. Many of their alumni also play crucial roles in shaping the current patterns of Islamic education in Malang (Immanudin, F. Personal Interview, June, 14, 2018). The next Islamic student movement is Muhammadiyah Student Association (IMM), an organisation under the Muhammadiyah organisation.2 IMM was established in 1946 in Yogyakarta (Burhani, 2016). The vision of the IMM is “working towards the establishment of a noble Islamic academy in order to achieve Muhammadiyah’s goals”. Based on that vision, the following are its missions: (1) preparing its members to become the members of Muhammadiyah fellowship, the people, and the nation, who are always loyal to their beliefs and aspirations; (2) encouraging its members to constantly engage in worship, work diligently in their studies, and use their knowledge to carry out their devotion to Allah Almighty; (3) assisting members in particular and students in general in accommodating their interest; (4) intensifying, effectuating, and enlivening the preaching of Islam and the concept of doing good and avoiding evil (al-ma’ruf nahi munkar) in the student community; and (5) sustaining all efforts that do not violate the principles, motives, and goals of the organisation by upholding all applicable laws of the Republic of Indonesia (Burhani, 2016). After nearly 40 years of establishment, on 31 March 2002, IMM initiated the Malang City Declaration by carrying out the Progressive Member Manifesto which was driven by the spirit to realise a great Indonesian nation in a new, peaceful, just, and prosperous society in the shade of divine pleasure. Malang is therefore an important city in the history of IMM

Disability discourse and Muslim student organisations

193

movements because this is the place where the IMM declaration was made. In the declaration, IMM reaffirmed itself as an organisation that supports democracy by participating in solving national problems and ensuring intellectuality and stability in carrying out real actions (Zaki, M. Personal Interview, August, 12, 2018) . The last Islamic organisation observed is the Indonesian Islamic Student Movement (PMII). PMII is a student organisation that has a close relationship with Nahdlatul Ulama (NU). It was established on 17 April 1960. The initiation of PMII started from the dissatisfaction of NU students who were members of the HMI. NU students considered that HMI’s movements tended to politically favour a specific group, namely MASYUMI.3 In addition, there was an assumption that HMI also tended to side with the modernist group, Muhammadiyah, in addition to MASYUMI (Zainuddin, 2015). The organisation aimed to implement Islamic traditional values in line with NU by integrating Islam and local traditions (PMII, 2013). PMII is highly regarded in Malang as it is a city in which the majority are Muslim traditionalists associated with NU. A great number of their alumni are involved in local politics, NGOs, and the central economic roles in the city. In addition, the mayor of Malang is an alumnus of PMII and he used his PMII networks to get votes during the mayoral election. Therefore, the establishment of PMII basecamps in many campuses in Malang is always supported. With 16 komisariat or basecamps located in several universities in the city, PMII has become the biggest Islamic student organisation in terms of distribution. However, in terms of the number of members, KAMMI is still the largest (Immanudin, F. June, 14, 2018). Disability discourse in National Front of Indonesian Muslim Student (KAMMI) As an organisation, KAMMI pays special attention to social problems in society such as law enforcement, unity, and state security. Unfortunately, regarding disability issues in Indonesia, this organisation clearly explains that there is no priority programme in KAMMI that systematically seeks to participate in creating inclusiveness for persons with disabilities. This was reiterated to us in participant interviews as outlined below: Yes, to be honest, in KAMMI, I have never heard of it, and there has never been a discussion between KAMMI internals at UIN. Even in the region, there has not been any discussion about disability (Immanudin, F. Personal Interview, June, 2, 2018. Furthermore, KAMMI pressingly needs a work programme that incorporates the issues related to disabilities in its activity schedule. Some noteworthy disability-related activities involving KAMMI members are their involvement in sign language learning programmes for deaf students and an

194

Slamet Thohari et al.

alumnus of KAMMI working for the non-profit organisation Akar Tuli (a deaf community based in Malang). However, these examples have to do with the members’ personal interests rather than a systematic and well-planned programme. However, although there has never been a programme that specifically addresses disability issues, KAMMI as an organisation is aware that disability issues are important to be prioritised, both in society and within the organisation. The informant stated in the interview that disability issues should be set as the third priority programme in the organisation after education and law enforcement issues. This is an effort to accommodate the current hot issues in the community as well as the organisation’s efforts to respond to the latest social problems. However, disability, in my opinion … should be the third priority … why? Because people with disabilities have the same rights as the others; the others get their rights, then they should get the same, such as health, education, and access to justice. They should have. But we focus more on education and law enforcement issues (Purnomo, WA. Personal Interview, August, 7, 2018). Such awareness of the importance of disability issues – stating that it should be included as one of the five top priority programmes within KAMMI’s internal organisation is proof – is largely driven by the members’ knowledge. A large amount of information available on social and mainstream media also encouraged them to include disability issues in annual programmes, although it has not yet materialised systematically in real programmes. In addition, its members agree to make disability a priority issue that must be brought to attention so that the government can fulfil the rights of persons with disabilities in society. And, to be honest, in terms of awareness, the government is the most responsible for them, because they have the power and resources, the money to provide services. They should provide accessible facilities, pay attention to their (the disabled) education. Might we support the government in the psychological area, supporting them with very limited resources, but they (the government) have a lot of things to provide for the disabled (Purnomo, WA. Personal Interview, August, 7, 2018). According to KAMMI’s view, they have not included disability issues in their daily programme, which should be in accordance with their vision to help solve community social problems. KAMMI believes that, as a student movement organisation, encouraging the inclusion of people with disabilities should be a priority. Even though the importance of disability issues is recognised, disability inclusion is not yet well practiced in organisational activities. For example, one of the KAMMI members is a person with visual impairment, and they frequently participate in activities off campus. However,

Disability discourse and Muslim student organisations

195

because the majority of KAMMI members are non-disabled, the said disabled member did not last long in the organisation. This demonstrates that, in practice, the organisation is not ready to accept disabled members due to a lack of awareness and knowledge about how to support people with disabilities who want to participate in organisational activities. Furthermore, discrimination experienced by persons with disabilities is quite prevalent among members, especially when it is associated with worship rituals in Islam such as the lack of accessibility of persons with disabilities to attend the sermons because of the lack of accessibility to mosques, ablution facilities, and transportation to mosques. This limited access is the cause of the absence of religious teachers for persons with disabilities, which ultimately causes disability issues to not be prioritised in daily religious life. Even though it is acknowledged by KAMMI members, Islam does not discriminate the position of persons with disabilities both in the context of the way of worship (fiqh muamalah) and divinity (monotheism). If it is about the postulate, we cannot simply just talk about it. It is true that for regarding disability issue, Allah never reprimanded the Prophet Muhammad when one of his friends with disabilities talked then Rasulullah ignored him as written in Surah Abbasa of Qur’an. So, the surah came down, one of them as the asbabun nuzul of the earlier event because Rasulullah ignored a visually impaired man whose name is Abdullah bin Umi Mahtum. When Rasulullah was chatting with his friend, Abdullah wanted to have a conversation with Rasulullah but the Prophet ignored him because he was visually impaired, thus Allah rebuked his action with the arrival of this surah, then Rasulullah noticed (Immanudin, F. Personal Interview, June, 3 2018). KAMMI members also consider persons with disabilities to be special creatures created by God, like what has been stated in the verses in the Qur’an in the Surah Al-Hujuraat, as explained by one of the KAMMI members, Fadzar Firdaus, as follows: In the Surah Al-Hujuraat, it explains, more or less, about ukhuwah, right … Well, according to that, it can become a strong reason for us to pay attention to the condition of our friends with disabilities out there, we need to get to know one another. And if you already understand each other, then there is itsar in this context, that’s what needs to be considered in humans (Firdaus, F. Personal Interview, June, 3 2018). As an organisation, KAMMI is engaged in prophetic intellectuality and has the knowledge of equal disability and non-disability rights in Islam. However, it has not yet become an intellectual basis for activism. The organisation is still

196

Slamet Thohari et al.

struggling to incorporate disability issues in their education system for their members. They are struggling to raise the issues of disability as part of their advocacy and as a social problem which needs more attention. Disability discourse in Muhammadiyah Student Association (IMM) As an organisation, IMM does not yet have an ongoing programme dealing with disability issues in Indonesia. They also had never held a serious study or programme related to the inclusion of people with disabilities. However, they have a simple annual programme which is buka bersama or having iftar (breaking the fast) together in front of the local legislative building with persons with disabilities. For them, the issues they currently focus on include dealing with Islam, terrorism, and religious fundamentalism; religious minority rights; justice for women and children; an increase in college tuition fees; and prostitution, excluding disability from the list of priorities. On campus, to be honest, we have never involved students with disabilities, but in terms of social activities, we once had iftar (breaking the fast) together, we played games with them. Our purpose was to maintain silaturahmi (friendship) and muhasabah (self-reflection). So, we want to comfort them that as disabled, they are not alone. That was done once during Ramadhan (fasting days) (Hidayat, R. Personal Interview, August, 10, 2018). Despite the fact that they recognise the importance of disability, they have not addressed it. The ongoing programme, as well as the annual programme, do not cover disability issues. Disability issues have not been prioritised or considered in this organisation’s large-scale programmes. As Iqbal said It seems that our annual program has not addressed that issue, and in my opinion, that is urgent. Some social aspects of the empowerment program suit them. Honestly, we are doing the mainstream, general program (not including them) (Iqbal, Personal Interview, August 10, 2018). Even though they do not have a special programme on disability, IMM claims that they are open for people with disabilities who would like to get involved in the organisation, and they will be ready to facilitate them, including picking them up if they need to attend the organisation’s activities, although, hitherto, none of their members are persons with disabilities. This shows that IMM is organisationally not ready to have members with disabilities, especially because of the lack of knowledge on how to support different types of people with disabilities to be actively involved in the organisation.

Disability discourse and Muslim student organisations

197

Actually, issues related to disability are significant, why? There are two sub-divisions in our organisation that have two members with disabilities, but honestly, it is quite difficult for them to get involved in the organisation’s programs. First, technically, they need us to pick them up. Some of us feel that it is tiring and unfavourable, so, we allow them not to get involved, since they are not the majority … I do believe that this happened to us unconsciously; it is difficult for them to participate or even do their activities (Zaki. M. Personal Interview, August, 12, 2018). As an organisation based on Islamic teachings, IMM members believe that humans have the same position before Allah SWT. Based on Rohima Hidayat’s statement below, several verses in the Qur’an are evident as references for Muslims to care for their fellow humans, especially the unfortunate ones, including persons with disabilities. Among them are the sayings of the Prophet “not you go to heaven before you love each other”, which means that there is a form of caring required among each other. Then, there is the Surah Al-Ma’un verses 1–3, stating clearly that people who lie in the name of religion are those who do not want to help the poor, do not want to help the weak. Then, in the Surah Al-Imran verse 104, and Surah An-Nisa verse 9 “fear that you will leave your group, your generation, in a very weak state”. That is very clear. God forbids us to be afraid to leave behind our weak successors (Hidayat, R. Personal Interview, August, 10, 2018). The statement above clearly explains that the IMM members have the religious knowledge supporting their way of thinking in seeing persons with disabilities. The disabled are included as a group of people who are weak (mustadlafin) and should not be left behind or ignored if a Muslim wants to enter heaven. IMM members also believe that a Muslim is judged by God based on his piety and not on his physical deficiencies. They also claim that in daily worship, Islam gives the same obligations to everyone without exception, even though it is permissible to use different methods in completing the worship rituals. For example, when a Muslim is unable to stand, they are allowed to sit or lie down but the obligation to pray remains. In the Qur’an, Allah gives a hint that we are the same and are distinguished only by our level of adherence. Now, related to the arguments of not looking at, uh, … gender, Allah does not look at whether it is a physical quality, or any other thing. We surely sin when we do bad things. If we do good, we will get a reward (Zaki, M. Personal Interview, August, 12 2018).

198

Slamet Thohari et al.

The teaching that persons with disabilities are the same as the able-bodied before God is based on the proposition in the Quran as the main source of Islam. However, it is not reflected in the organisation’s efforts in the context of disability activism. IMM members see the organisation so far as still struggling with mainstream issues such as terrorism, Islamic fundamentalism, etc., and has not been able to advocate for the marginalised groups, including persons with disabilities. The absence of ongoing programmes within the organisation which uphold the rights of persons with disabilities, who are considered a weak group of people in the Quran, IMM considers the government as the most responsible party for eliminating stigma and discrimination experienced by persons with disabilities. The inability of the organisation to assist their members with disabilities is associated with the failure of the government in providing accessible infrastructure for persons with disabilities. For example, IMM members with disabilities would have been able to keep participating in the organisation if the government had been able to create accessible infrastructure for people with disabilities. They do not see themselves as a part of the ecosystem, eliminating the stigma and discrimination against persons with disabilities. Disability discourse in Muslim Student Association (HMI) In addressing disability issues, HMI has different practices. It has commissariats at the university level who incorporate disability issues in their programmes, although some of them have not made the issues a programme priority in their organisation. The different focuses in the organisation’s programmes are based on the context brought forward by both formal and non-formal members. Additionally, each university’s policy regulating the acceptance of students with disabilities is also one of the determinants impacting the organisation’s focus programmes. For example, Universitas Brawijaya has been implementing a new policy, providing a fixed quota for students with disabilities so that non-disabled students can have direct experience interacting with and understanding the needs of the disabled in daily life. This leads to their students, who are also HMI members, having improved understanding and awareness of disability issues. Meanwhile, HMIs in universities that do not implement a similar policy, such as the Islamic State University Al-Maliki (Universitas Islam Negeri Al-Maliki – UIN), do not have a special programme related to disability issues. There have been no activities involving the disabled, because, even in the activities at UIN, students with disabilities are few. As far as I know, among 3,500 UIN students, only two students are persons with disabilities (Izzaty, M. Personal Interview, August, 12 2018). Meanwhile, HMI members participate in disability activities on other campuses that have programmes and students with disabilities. Campus

Disability discourse and Muslim student organisations

199

policies appear to have a strong influence on the way HMI members think. As Akbar said: … they, for sure, need assistance to get services. The members of HMI, especially the cadres who have strong spirit of humanism, are involved in assisting them. Secondly, we emphasise that the stakeholders in Universitas Brawijaya are responsible, especially the official servants, to make accommodating the need of people with disabilities better (Akbar, R. Personal Interview, July 10 2018). One programme implemented by HMI is distributing 800 pieces of hearing aids for free to the deaf communities in Greater Malang. Several HMI members also spoke up in support of a special law that governs the provision of hearing aids and facility services to people with disabilities. HMI positions itself as an organisation that advocates for persons with disabilities by encouraging the government to actively participate in protecting and ensuring the rights of persons with disabilities. In addition to large-scale programmes, HMI Malang has also promoted individual advocacy by providing prosthetic limbs to persons with disabilities with a lower economic status, by gathering financial support from HMI alumni. In addition, there are many HMI members at Universitas Brawijaya who volunteer to assist persons with disabilities at the university’s Disability Centre. All HMI members have the same perspective regarding the discrimination experienced by persons with disabilities; other problems include lack of access to mosques and discriminatory treatment of persons with disabilities when they need to perform worship. Furthermore, HMI members also understand the teachings of Islam that persons with disabilities are considered weak people who must be protected by other Muslims, and if no Muslim helps them, then it means all Muslims sin. I categorise friends who have physical deficiencies within groups of people who need attention, or as in the language of the Qur’an, they belong to the underprivileged. As an Islamic organisation believing that the source of the truth comes from the Qur’an, we should care and pay special attention. Because of what? Because students who are disabled are part of the underprivileged and it has become an obligation, or we can call it fardhu kifayah (obligatory by society). One of us must do it (Akbar, R. Personal Interview, July, 10 2018). As an organisation based on Islamic teachings, HMI is aware that, ideally, Islamic organisations must be actively involved in the issues of disability because every human being has the same rights before God. However, HMI firmly states that not many Islamic organisations are involved in disability inclusion, even though the percentage of Muslims with disabilities in Indonesia is significant. Financial assistance provided specifically for persons

200

Slamet Thohari et al.

with disabilities is to Non-Governmental Organisations (NGOs) that are specifically engaged in empowering persons with disabilities and not to Islamic-based organisations because there are no programmes within the Islamic organisations that specifically address the issues around persons with disabilities. Apart from the absence of programmes that continuously carry out empowerment efforts for persons with disabilities, HMI’s efforts to move on a practical level by carrying out concrete actions to carry out advocacy and social services are evidence of HMI’s role in raising awareness and praxis in upholding the rights of persons with disabilities. Disability discourse in Indonesian Muslim Student Movement (PMII) PMII is an organisation that is open to accepting persons with disabilities as members, empowering minority groups and marginalised communities in Indonesia. This departs from the teachings of Islam that God does not differentiate the level of people except based on their piety. Therefore, persons with disabilities are considered to have the same position as the nondisabled to participate in regeneration in the organisation. All human beings have the right to live, to get an education, and to be active in organisations because those rights have been protected by our country, so we must accommodate. We embrace anyone who wants to join PMII. As long as they meet the requirements, we are open to all of them (Cahyono, R. Personal Interview, July, 16 2018). As an organisation, PMII claims that they do not segregate and discriminate against the disabled or non-disabled, for they are indeed the same, having the same needs as other people. This organisation believes that people with disabilities need affirmative actions through many policies related to their needs that have not been provided by the government; thus, PMII will assume the advocacy role in the future. According to the active members, PMII does not yet have a specific programme related to disability issues. Currently, there are several persons with disabilities who become PMII members. The efforts of the organisation to fight for the rights of people with disabilities are still at the discourse level; they have not yet been realised in actual activities. PMII claims that it happened because the existing infrastructures do not support people with disabilities to join and participate in all activities in the organisation. Additionally, PMII admits that disability issues have not been discussed intensively in their movements. Maybe the issues around my friends with disabilities is not very prominent. Maybe we are happier to discuss academic matters and the faculties. Other social issues like poverty, etc., dominate our discussion (Lutfi, M. Personal Interview, July, 16 2018).

Disability discourse and Muslim student organisations

201

However, it does not make PMII members ignore the facts about discrimination and stigma experienced by persons with disabilities. Knowledge and information about discrimination against persons with disabilities are obtained from social media, the internet, and personal experiences. Additionally, members of PMII consider that someone’s disability has something to do with karma from their parents who did bad deeds, which causes them to be stigmatised and not get the same rights as the non-disabled. This is very typical of the Javanese concept of disability, which in some cases is linked to the people’s morality (see Thohari, 2011). The members of PMII also understand the role of the government in creating inclusiveness for persons with disabilities, especially regarding infrastructure including mosques, sidewalks, and roads that are not yet accessible to people with disabilities. Whereas, persons with disabilities have the same obligation to worship as nondisabled in Islam with certain exceptions. Organisations advocating for the right of persons with disabilities are strategic actors, especially in terms of upholding the right of persons with disabilities to perform religious worship. The roles of government and university leaders in empowering people with disabilities are crucial to support PMII to have deeper understanding about creating inclusiveness for persons with disabilities, which might lead to real actions. Actually, if the disability issue is compared to other issues, persons with disabilities can be considered a victim or an object. Our friends who experience it are not too many, that is why it seems that this issue is resolved. And, honestly, we do not discuss disability issues that often, because, maybe, ‘the objects’ are not that many. The issue is then covered by the social environments, and we also do not pay too much attention to our facilities (Lutfi, M. Personal Interview, July, 16 2018). Members of PMII believe that Islamic organisations should focus their movements on advocating for an inclusive society including people with disabilities. This is based on the argument that Islam regards persons with disabilities as an “oppressed group” (mustadlafin), who are weak in terms of socioeconomic status. Every able-bodied Muslim are obliged to do something to support those groups of people, as their member said: It is supposed to be like that, if the vision of PMII is ‘defending the oppressed group’, then our process is to explore disability issues, what needs to be implemented, apart from advocating to the stakeholders. We know we should do this more especially regarding public facilities (Cahyono, R. Personal Interview, July, 16, 2018). Finally, PMII recognises the importance of disability issues. However, it has not been reflected in the programme or in the daily lives of their

202

Slamet Thohari et al.

members. Disability is only a minor part of the discussion, but it is not a significant part of their movement. This also occurred in the previously mentioned organisations. Conclusion In general, our research shows that Islamic student organisations know the subordination, marginalisation, and discrimination against people with disabilities. Their understanding of the issues comes from various media coverage including social media or from seeing what happens in their surrounding environment. Despite their understanding and lack of awareness of disability issues, they do not specifically pay attention to the problems. Their understanding of Islam, which according to them is an inclusive religion, is not strongly practiced and implemented in the programmes. Their understanding of inclusive Islam for people with disabilities has not yet been realised in their vision and activities. These Islamic teachings on disability, however, have not yet been used as a reference to establish inclusive environments for persons with disabilities in Muslim societies, including in Indonesia. Furthermore, many of our respondents believe that disability is viewed positively and that being disabled is a blessing from God. They believed that Muslims should appreciate the rights of people with disabilities, but mostly they do not know the detail of disability issues and how to treat them in society. Most student organisations understand that Islam does not discriminate and segregate between the disabled and non-disabled people. Additionally, most of them believe that people with disabilities are oppressed groups or mustadlafin, in the Islamic term. Some of them consider that the disabled are special beings, the result of kharma or the consequence of the sins committed by their parents. Nevertheless, all organisations believe that they should uphold and defend the rights of people with disabilities. Although all the organisations believe that Islam respects the rights of people with disabilities, the members did not indicate sufficient disability awareness in their daily lives and did not have their belief reflected in their annual programmes. In other words, Islamic teachings on disabilities have not been implemented yet in their organisations. Islam does not become the spirit and main support in the implementation of equal rights for people with disabilities. Some organisations like KAMMI and IMM are aware of disability issues but do not incorporate inclusion in their programmes, while PMII does not prioritise disability inclusion in their programme despite it being in line with their vision. The only organisation that claimed to have a programme focused on the issues around disability is HMI, for some of its members have been involved in disability programmes at their campuses. The fact that persons with disabilities are considered a minority is believed by some Islamic movements to be a factor in why their issues are marginalised. The absence of accessible public spaces and infrastructure for the

Disability discourse and Muslim student organisations

203

disabled leads to disability invisibility. That is why the awareness and insight of some people who participate in an Islamic-based movement organisation related to disability are minimal. Consequently, disability issues are not a top priority in the context of equality and humanity. Notes 1 One of the biggest private universities in Indonesia under the Islamic organisation of Muhammadiyah (see https://www.umm.ac.id). 2 The second largest Islamic organisation in Indonesia, with a concentration in urban areas. Generally associated with Nahdlatul Ulama, Indonesia’s largest Islamic organisation, which is primarily based in rural society (see Brown (2019)). 3 The Council of Indonesian Muslim Associations, also known as the MASYUMI Party (Partai Majelis Syuro Muslimin Indonesia), was a significant Islamic political force in Indonesia during the Liberal Democracy Era. However, President Sukarno outlawed it in 1960 (see Madinier (2015)).

References Al-Aoufi, H., Al-Zyoud, N., and Shahminan, N. (2012) ‘Islam and the cultural conceptualisation of disability’, International Journal of Adolescence and Youth, 17(4), pp. 205–219. Available at: 10.1080/02673843.2011.649565 Bazna, M. S., and Hatab, T. A. (2005) ‘Disability in the Qur’an’, Journal of Religion, Disability & Health, 9(1), pp. 5–27. Available at: 10.1300/J095v09n01_02 Brown, G. (2019) ‘Civic Islam: Muhammadiyah, NU and the organisational logic of consensus-making in Indonesia’, Asian Studies Review, 43(3), pp. 397–414. Burhani, A. N. (2016) Muhammadiyah berkemajuan: Pergeseran dari puritanisme ke kosmopolitanisme. Mizan Pustaka. Cahyono, I. (2003) ‘Melacak “akar” ideologi gerakan mahasiswa Islam Indonesia’, Jurnal Pemikiran Islam, 1(2). Available at: https://www.averroes.or.id/melacakakar-ideologi-gerakan-mahasiswa-islam-indonesia.html Chatters, L. M. (2000) ‘Religion and health: Public health research and practice’, Annual Review of Public Health, 21, pp. 335–367. Available at: 10.1146/ annurev.publhealth.21.1.335 Forman, J. et al. (2008) ‘Qualitative research methods: Key features and insights gained from use in infection prevention research’, American Journal of Infection Control, 36(10), pp. 764–771. Available at: 10.1016/j.ajic.2008.03.010 Hasnain, R., Shaikh, L. C., and Shanawani, H. (2008) ‘Disability and the Muslim perspective: An introduction for rehabilitation and health care providers’, GLADNET Collection, Paper 460. Available at: http://digitalcommons.ilr. cornell.edu/gladnetcollect/460 Kartakusumah, B. (2016) ‘Pengembangan kepemimpinan tokoh HMI (Himpunan Mahasiswa Islam) dalam perspektif pembelajaran sepanjang hayat’, INSANCITA: Journal of Islamic Studies in Indonesia and Southeast Asia, 1(1), pp. 81–102. Machmudi, Y. (2008) Islamising Indonesia: The rise of Jemaah Tarbiyah and the Prosperous Justice Party (PKS). ANU Press. Available at: https://www.jstor.org/ stable/j.ctt24hddh Madinier, R. (2015) Islam and politics in Indonesia: The Masyumi Party between democracy and integralism. NUS Press. Mahalli (2019) ‘Disability terms in Indonesian translation of the Qur’an’, Indonesian Journal of Disability Studies, 6(2), Article 2. Available at: https://ijds.ub.ac.id/ index.php/ijds/article/view/187

204

Slamet Thohari et al.

Miles, M. (2000) ‘Disability on a different model: Glimpses of an Asian heritage’, Disability & Society, 15(4), pp. 603–618. Available at: 10.1080/0968759005005 8206 ‘Modul Pelatihan Kader Dasar XXV Komisariat Brawijaya’ (2013) PMII. Nila, D. K. (2021) ‘7 Organisasi Ekstra Kampus Terbesar di Indonesia, Maba Wajib Tahu!’, HeyLaw.edu, 8 February. Available at: https://heylawedu.id/blog/7organisasi-ekstra-kampus-terbesar-di-indonesia-maba-wajib-tahu Rosyad, R. (2006) A quest for true Islam: A study of the Islamic resurgence movement among the youth in Bandung, Indonesia. Australian National University E Press. ‘Sejarah HMI Sastra’ (no date) HMI Komisariat Sastra UM. Available at: https:// komsas-malang.hmi.or.id/sejarah-hmi-sastra ‘Sejarah Lahirnya Himpunan Mahasiswa Islam’ (2023) HMI. Available at: https:// himpunanmahasiswaislam.org/history Thohari, S. (2011) Contesting conceptions of disability in Javanese society after the Suharto regime: The case of Yogyakarta, Indonesia. Master thesis. University of Hawaii at Manoa. Available at: http://hdl.handle.net/10125/101399 Zainuddin, M. (2015) Nalar pergerakan: Antologi pemikiran PMII. Naila Pustaka. Available at: http://repository.uin-malang.ac.id/2265/

12

Migration studies and disability studies Colonial engagements past, present and future Nicola Burns

Introduction This chapter explores what can appear as two discrete and distinctive fields of study: disability studies and migration studies. This chapter’s purpose is to engage with Mayblin and Turner’s (2021) important analysis of migration and colonialism from a disability studies perspective. In doing so, I build upon ideas others have begun to explore (Berghs, 2015; El-Lahib and Wehbi, 2012; Pisani and Grech, 2015) around an often-overlooked group: disabled migrants. Specifically, I reflect on recent engagements within the field of migration studies that explore the silences around relations between colonialism and migration (Mayblin and Turner, 2021). Building upon Mayblin and Turner’s ‘Migration Studies and Colonialism’ (2021) I argue that there are a series of invisibilities not only between migration studies and colonial histories, but migration studies and disability studies. This invisibility includes the understanding of disability as biological, in contrast to critique of essentialist arguments to race, sex, gender and sexuality within migration studies and sociological research more generally (Burns, 2019, p. 309). The chapter begins by situating what we know about disability and migration. The increasing awareness of disabled people on the move from a policy and practice perspective is reviewed. The chapter then turns to how migration studies engage with post/neo-colonialism and what can such approaches offer us as disability scholars. Drawing principally on the work of Mayblin and Turner (2021), the chapter explores the centrality of colonial practices in situating contemporary discourses, policies and practices around migration at the national and international scales. The exploration of relationships between racialisation and its intersection with gender and sexuality is contrasted with the invisibility of disability within migration studies. The chapter turns to disability studies scholars work around race and disability, exploring the engagements with Mayblin and Turner’s arguments around the place of colonialism and racism. This is illustrated through an example of the elision of health and disability within bordering practices throughout recent history. The conclusion reflects on future developments and engagements in both disability studies and migration studies. DOI: 10.4324/9781003280422-13

206

Nicola Burns

People on the move: Migration and disability Contrary to popular tropes of disability equating with immobility, disabled people are on the move, moving for all the reasons people leave their country of birth: economic opportunity, family reunification, study, fleeing conflict, persecution and violence (IOM, 2022). Until relatively recently, there has been little effort to determine the numbers of disabled people who are seeking to cross borders. Reflecting the dearth of data collated around disabled people more generally, data are lacking about disabled people on the move and often the estimate of numbers of disabled people globally is extrapolated to provide a rough estimate of numbers of international migrants and those who are forced to move (Committee on the Protections of the Rights of All Migrant Workers and Members of Their Families and Committee on Rights of Persons with Disabilities, 2017; European Union Agency for Fundamental Rights, 2016; see also Dowling, 2017; Smith-Khan et al., 2015). Recent 2020 estimates suggest there are 281 million international migrants in the world (IOM, 2022), and 80% of migration takes place in the majority world/global south (IOM, 2022). A total of 59 million people were internally displaced in 2021, while 82.4 million people had been forcibly displaced in 2020 (UNHCR, 2022). Of this number, 26.4 million were refugees. Assumptions of immobility, coupled with the methodological limitations within the wider migration field around definition, measurement and comparability (Anderson and Blinder, 2019), result in the invisibility of disabled people in migration data and policy discourse. Several initiatives are in development to address the lack of knowledge around disability and migration, drawing on the inclusive data charter, charter for inclusion on person in humanitarian action and use of the Washington Group questionnaire to provide comparability (see Migration Data Portal, 2021). Taking the global estimate of 15% of the world’s population as disabled (WHO and World Bank, 2011), these numbers suggest that there are 42 million disabled international migrants and 12.4 million disabled people who are forcibly displaced (Migration Data Portal, 2021). Readers will note that in these few short sentences, I have utilised several different definitions and immigration statuses: international migrant, internally displaced persons, forcibly displaced, refugee. Often these terms are used interchangeably. However, while immigration status for an individual may change over time, this does not mean that terms are synonymous. There is no legal definition of a migrant in contrast to ‘refugee’, which is legally defined under the 1951 UN Refugee Convention (IOM, 2019). As stated earlier, reasons to migrate are many, reflecting not only individual choices but also the wider socio-economic and political contexts within societies, and as we shall explore, the historical connections through post/neo/colonial relations. There is increasing recognition of environmental pressures to migrate (International Disability Alliance, 2021; Jampel, 2018).

Migration studies and disability studies

207

Under international law, people have a right to leave their country (see UNDHR, Article 13) and this right is again asserted through Article 18 of the UNCRPD: ‘States Parties shall recognise the rights of persons with disabilities to liberty of movement, to freedom to choose their residence and to a nationality, on an equal basis with others’ (UN, 2006). However, there are limitations placed on entry, with reservations determined by states. While certain ‘categories’ of migrants’ right to move are enshrined in international law, e.g., refugees, other categories of migrant are afforded little scope to move and can be variously labelled irregular, illegal and undocumented migrants. In contemporary times, we have seen the increasing assault on the rights of refugees to exercise these rights as states utilise a range of methods to undermine and deny the right to asylum.1 Further, those categorised as ‘irregular’ are subject to detention, experiencing pushbacks on land and sea, the criminalisation of those seeking to assist and violence is increasingly commonplace (Mainwaring and DeBono, 2021; Tyler, 2013). The IOM ‘Missing Migrants’ project records in real time the numbers of migrants lost through journeys, with just under 50,000 migrants missing since 2014 (IOM, 2022). Almost half of whom have been lost making the perilous journey across the Mediterranean Sea, with 24,144 people unaccounted for in June 2022 (IOM, 2022). Migration/border studies scholars have utilised Mbembe’s concept of necropolitics to describe the uses of death in the response to migration across states and at the supranational level (2003). Once people on the move have arrived at their destination, they may be subject to further disabling and impairing situations, either through unsafe work practices (see Kim, 2011), lack of access to healthcare systems or asylum systems that undermine health through poverty and bureaucratic violence in the hostile environment (Burns et al., 2022; Isaacs et al., 2022; Mayblin, 2019). Colonial engagements: Disability studies and migration studies perspectives This section will outline the engagement with post/colonialism within the fields of disability studies and migration studies. Outlining the key debates within disability studies and its recognition of colonial practices in the production and (im)mobilisation of disabled people, our attention will turn to migration studies lack of engagement with the place of disability, the production of impairment and ill-health throughout migration processes in historical and contemporary times. Disability studies: Anxious engagements?

Within disability studies, the relationship between neo/colonialism and disability has long been observed, with activists and scholars pointing to the relations of wealth extraction from the global South to the global North

208

Nicola Burns

and the oppression of disabled people within these global socio-economic contexts (Charlton, 1998; Driedger, 1989). Pointing to the production of impairment through enslavement, extraction of resources, environmental degradation, labour exploitation and conflict, writers such as Connell (2011), Grech (2015), Meekosha (2011) and Soldatic and Grech (2016) have illustrated the dynamics of colonial histories, the contemporary impacts of history and ongoing neo-colonial actions. The importance of these texts in disrupting and reframing discussions around where disability is experienced, and what this means conceptually in understanding what disability is, how it is experienced and whether debates in the global north have relevance to the understanding and lived experience of disability in the majority world (Connell, 2011; Grech, 2016; Nguyen, 2018). Ghai (2012) suggests that postcolonial writing and the processes of ‘Othering’ can be powerful tools to explore disability experiences. Building on the work of Connell and others, Nguyen (2018, p. 9) argues that by pushing forward southern thinking is a means by which ‘epistemic inequalities’ can be challenged. These writers raise important issues around the invisibility of disability, through lack of acknowledgement of disability/ impairment as a product of colonial histories and neo-colonial globalisation, war, environmental breakdown and media representations of disability. Yet, the ‘grand erasure’ of disability within global north thinking and critique of colonialism (Meekosha, 2011) continues through postcolonial writing, which, as Grech (2015) observes, does not attend to the lives and experiences of disabled people. A key aspect of post/decolonial writing is the recognition of the racialisation of those subject to colonial rule, with a view to the ‘scientific’ eugenicist underpinning of racist colonial practices and its enduring impact on immigration law and policy in the present (see Soldatic, 2020). The intersection of race and disability has been the subject of ongoing debate and discussion amongst scholars working at the interstices of disciplines, mapping the past and present efforts to render (disabled) people immobile. Scholars such as Baynton (2016) and Dolmage (2018) have offered insightful analysis of the ways disability and race were entwined within immigration laws of North America in the 19th and 20th centuries. Mitchell and Snyder (2003), drawing on the work of Gilroy, highlight the formation of the Eugenic Atlantic. Others have considered the racist and disablist practices of contemporary immigration systems (El-Lahib, 2016; Saltes, 2013; Soldatic and Fiske, 2009; see Burns, 2019, for overview). Migration studies and colonialism Mayblin and Turner (2021) offer a critical review of migration studies engagement with colonialism in contemporary and historical migration. The central tenets of their argument assert that migration studies have not fully attended to the role of colonialism in the modernity project of European states, in the formation of immigration laws and policies, nor in the

Migration studies and disability studies

209

destruction of ways of seeing and being in the world. Further, they argue that contemporary framings of migration and development are conceptually linked to colonial justification around enslavement and who is deemed ‘human’. Drawing on a range of thinkers across disciplinary fields of migration studies, critical race theory, sociology and critical border studies, Mayblin and Turner highlight the ways racialisation has not been acknowledged within the migration studies field, resulting in a lack of attention to race as an analytical category. Yet ‘colonial racism’, they observe, ‘shaped mobilities of the past and racialisation shapes the present’ (2021, p. 34). Drawing on the work of Hall, they see racism as constituted through the biological and the cultural. Observing the ways race is essentialised through the biological, the authors utilise key texts to illustrate their argument that a racialised mobility is embedded within systems of movement and migration in the colonial project. Mayblin and Turner argue that while the organisation and administration of movement across borders can be viewed as a purely technical matter, this belies the histories of contemporary administrative systems of movement, founded on colonial practices linked to settlement and forced migration of those enslaved. Definitional and methodological issues mentioned earlier speak to the ways in which the movement of ‘humans’ was developed and bound up with colonial histories of states, forced migration and enslavement and the connections to contemporary immigration policies and processes (Mayblin and Turner, 2021). Within migration data, for example: terms, such as ‘stocks’ and ‘flows’ of population, are an echo of times when Africans were viewed as commodity, subhuman and forcibly moved through human trafficking and enslavement (Mayblin and Turner, 2021). The categorisation of the human, informed by Enlightenment ideals, offered justification to diminish, exclude and subjugate through processes of racialisation, and as disability scholars have shown, ableism. From a disability studies perspective, through various practices, disability and race were co-constituted in the management of the movement of bodies, as racialised and disablist logics were utilised to determine the economic burden and worth of those forced to move and those seeking to move (see Baynton, 2016; Dolmage, 2018; see also Frederick and Shifrer, 2019). In their separate analyses of North American immigration systems in the late 19th and 20th centuries, Baynton (2016) and Dolmage (2018) alert us to the ways in which eugenics was actively utilised in immigration laws as a means to repel ‘disorderly bodies’ from entering North America. Borders, bordering and citizenship: Disability as bordering category In this section, we consider key concepts in migration and disability studies: bordering and citizenship. Citizenship is a key concept that is used to differentiate between those who can move, where they can move to and from and what resources can be accessed. Marshall’s concept of citizenship (1950)

210

Nicola Burns

focuses on the political, social and cultural responsibilities of the individual and the State and is often taken as a starting point of critique and development. Central to the concept of citizenship is the notion of a citizen of a demarcated place, geographically bounded. Those with citizenship have rights to call upon the resources of this bounded state and in turn have responsibilities to the state, which in these neoliberal times can translate into being economically viable through work and consumption. Disabled people have long argued that they are routinely denied citizenship rights within states (Oliver, 1996). While legal advances such as the UNCRPD and domestic legislation provide legal recognition of disabled people’s rights, the lived experience can be markedly different. Migration scholars have begun to consider the depletion of citizenship rights for state citizens and the implications for how we think about the nature of human and citizenship rights. Nash has reflected on the intersection of social and economic inequalities with stratified rights and its implications for how we understand these changing statuses. Similarly, Anderson points to the ‘banality’ of citizenship for the vast majority of individuals residing in states observing: ‘As welfare services are hollowed out and battered by austerity citizenship is much evacuated of much of its social content and the rights to citizenship are increasingly made dependent on being in employment and a taxpayer’ (2021, p. 374). Migration/Border scholars have analysed how borders are reproduced both through physical bordering practices between states and internal borders within states (Yuval-Davis et al., 2018). Earlier in the chapter, I referred to the use of pushback policies, offshoring and detention as some of the ways borders are created in the present. In contemporary times, Crawley and Skleparis (2018) consider the use of political bounding in European asylum systems to designate those who are deemed worthy of assistance: the deserving asylum seeker. Through administrative processes, asylum seekers are categorised as legitimate in their claims, with real material effects for entitlement to services and resources to the outcomes of restrictions dependent on categories ascribed. Parallels with disabled people in neoliberal states engaged in austerity agendas are clear with the use of bureaucratic violence, complex administrative systems and exhausting requirements for evidence of need (see Norberg, 2022; Shakespeare et al., 2017). In the UK, this is manifested in an austerity programme with profound consequences for disabled people resulting in human rights violations (UNCRPD Committee, 2017). Disability as a category has been utilised in immigration and bordering practices in often contradictory ways. Disability is simultaneously framed as both a risk to the receiving nation through the trope of burden of ‘nonproductive’ members of society accessing finite national resources, resulting in efforts to deny access, and as vulnerable, offering a means to display the beneficence of global north nations who accept ‘the sick and the needy’ through specific targeted programmes (see Yeo, 2017). This is not to deny disabled people’s vulnerability in forced migration situations. Disabled people

Migration studies and disability studies

211

are subject to greater threats to safety and to experience violence, with women and girls facing particular threats (Women’s Refugee Commission, 2022); are more likely to be left behind during humanitarian emergencies; and lack necessary support when they do reach safety (see Crock et al., 2017). However, as Pearce and Lee (2018) observe, in official state and international organisation guidance, the locus of vulnerability is often the individual, drawing upon disablist discourses that emphasise deficit and burden and an assumption that all disabled people are dependent. In doing so, the role of wider social structures that produce vulnerability is rendered invisible, with images of defenceless disabled people highlighting the horrors of war and the need for safety in more ‘peaceful’ countries. The role of the state – both home state and international partners – (in)action is obscured. Disability as solely a clinical/biomedical matter offers a narrow conception of disability at odds with relational approaches to disability as a product of social, economic and cultural environments. In the context of migration, it obfuscates the ways motivation to move (often called ‘push and pull’ factors), the process of migration, immigration status (and subsequent rights and entitlements based on status) and immigration and asylum systems produce impairment and long-term conditions. Further, as noted by Mayblin and Turner (2021), contemporary migration and forced migration are often removed from their historical context. This renders invisible the production of impairment and ill-health through enslavement and forced migration through colonial practices of natural resource expropriation, labour practices, wealth extraction and violence. In contemporary times, it obfuscates the ways subjects of postcolonial states have been treated by former colonial rulers, including geopolitical decisions to support or challenge states through conflict and the human, environmental and economic costs that create conditions where migration is about survival. To summarise, disability as health status is used both as a mechanism to deny the right to move and also to valorise western democracies performance as compassionate and willing to help those ‘truly’ in need. To adapt Mayblin and Turner’s (2021) phrase to our focus, disability is a means by which migration subjects can be made and border regimes are maintained. Bordering practices are increasingly being exercised within states, as States use of ‘everyday’ bordering as a means to ensure that only those with particular status can access the rights accorded to citizenship (see YuvalDavis et al., 2018). For example, in the United Kingdom, the Immigration Act 2014 exemplifies this everyday bordering. Proof of immigration status is required by employers, housing providers and health services for access to resources to be granted (Cassidy, 2019; Nellums et al., 2018; Tyler, 2013; Yuval-Davis et al., 2018). The boundedness and contingency of citizenship in contemporary migration policy in the UK found expression in the exposure of the Windrush scandal whereby those who were previously granted citizenship with their arrival with parents from the Commonwealth in the 1950s were subsequently denied citizenship rights and as such were

212

Nicola Burns

expelled from the resources of the state, such as healthcare (see Gentleman, 2019; Slaven, 2022). The post/colonial subject, intersectionality and decolonisation: Concluding thoughts Mayblin and Turner (2021) offer an analysis of the impacts of colonial racism on migration through engaging with diverse literatures from postcolonial, decolonial approaches to international law. This is a nuanced and complex argument that cannot be sufficiently summarised in this short chapter. They argue that the modernity project cannot be seen simply as a moment in history but rather as a way of thinking with temporal and spatial implications, a symbolic geography, if you will. Reading from a disability studies perspective, many of these historical events and contemporary practices utilised contain elements that would be familiar to disability scholars mentioned above. What are the implications of this analysis for disability studies interested in the historical and contemporary practices? I would argue that such a reframing engages directly with many of the issues identified by southern disability scholars and offers a way to attend to the practices around disability in the past that continue to influence the lives and experiences of disabled migrants in contemporary times. It requires us to critically engage with the ontoformative character of social processes (Connell, 2011, p. 1371), that is, the ways in which migration as process and responses to migration within the political and social sphere are embodied, resulting in the production of disability, impairment and distress. In this chapter, I have set out a few tentative thoughts, building upon scholarship within critical disability studies and engagement with recent and ongoing debates within border/migration studies. In doing so, I have highlighted the silences around impairment, ableism and disablement in migration studies more broadly and sought to build connections to recent debates around the place of colonialism in migration studies, arguing for greater engagement between these two fields. As noted earlier, disability scholars have utilised critical race theory in its efforts to articulate the impact of biological essentialism and offer alternatives to such narratives (Stienstra, 2012). In recent years, there have been increasing calls in the academe to ‘decolonise’. As Berghs observes, much of this work has been driven by global north scholars but ‘decolonisation does not have to be epistemologically nor ontologically located within the imaginaries of elite northern academics’ (Berghs, 2017, p. 1). How do we decolonise disability studies in its exploration of migration? Building upon the work of scholars analysing disability and race dynamics in migration contexts both past and present through recognition of the centrality of disability/impairment and racialisation within migration/bordering experiences, policies and laws (see Baynton, 2016; Dolmage, 2018; Soldatic and Fiske, 2009). It would also require a continuing shift in focus to include global south-south migration, engaging

Migration studies and disability studies

213

with the work of scholars and activists in the global south (see for review Izaguirre and Walsham, 2021; Jote and Tekle, 2022). Building on the work of disability scholars, one approach could explore how understandings of disability, impairment and health have been shaped by engagements with colonialism and what this means in relation to migrants understanding of disability, impairment and mental distress and resulting support services offered both in countries of origin, transit and settlement. Critique around western conceptions of mental distress and the charge of ‘medical imperialism’ (Summerfield, 2013) and the expansion of pharmaceutical solutions to distress across the globe (see Cosgrove et al., 2020) offer an important approach to the field of health and experiences of migrants in the global south and global north. Another approach offers a way to challenge disability studies approaches to the relationship between health, disability and medicine. As others have argued, the distinction between health and disability is easier to argue when one is classed, racialised, gendered and naturalised as a citizen in particular ways in the global north (see Grech, 2016). While disability is often overlooked within intersectional scholarship (Frederick and Shifrer, 2019), scholars such as Emery and Iyer (2022) point to the need for an intersectional approach in their exploration of deaf migration. An intersectional approach to such work would require conceptual and methodological enquiry, drawing on scholarship across migration studies and disability studies. In doing so, it requires us to foreground the racialisation of disability in migration contexts (see Artiles, 2013), to unpick the use of disability and race as analogies and to explore understandings of where individuals and groups are located as post/colonial subjects. Fundamental is the need to work with disabled migrants in developing pedagogy and research practices learning from the experiences and knowledge of disabled people (see Connell, 2007, 2011; Pearce, 2015; Piacentini et al., 2022; Quinn, 2014). Note 1 At the time of writing, the Nationality and Borders Bill was making its way through UK Parliament. The Bill is in contravention of the UNDHR and UNCRHR ( Grandi, 2022). The UK is not alone in its infringement of these basic rights with Australia implementing offshoring centres for the detaining of those seeking asylum.

References Anderson, B. (2021) ‘The banality of citizenship: From workers to migrants to fantasy citizens’, Journal of World-Systems Research, 27(2), pp. 370–377. Anderson, B., and Blinder, S. (2019) Who counts as a migrant? Definitions and their consequences. Oxford: Migration Observatory. Artiles, A. J. (2013) ‘Untangling the racialization of disabilities: An intersectionality critique across disability models’, Du Bois Review: Social Science Research on Race, 10(2), pp. 329–347.

214

Nicola Burns

Baynton, D. C. (2016) Defectives in the land: Disability and immigration in the age of eugenics. Chicago: University of Chicago Press. Berghs, M. (2015) ‘Disability and displacement in times of conflict: Rethinking migration, flows and boundaries’, Disability and the Global South, 2(1), pp. 442–459. Berghs, M. (2017) ‘Practices and discourses of ubuntu: implications for an African model of disability?’, African Journal of Disability, 6, a292. Available at: https:// ajod.org/index.php/ajod/article/view/292 Burns, N., Mulvey, G., Piacentini, T., and Vidal, N. (2022) ‘Refugees, political bounding and the pandemic: Material effects and experiences of categorisations amongst refugees in Scotland’, Journal of Ethnic and Migration Studies, 48(17), pp. 4066–4084. Available at: 10.1080/1369183X.2022.2058471 Burns, N. (2019) ‘Boundary maintenance: Exploring the intersections of disability and migration’, in N. Watson and S. Vehmas (eds.) Routledge handbook of disability studies. 2nd ed. London: Routledge, pp. 305–320. Cassidy, K. (2019) ‘Where can I get free? Everyday bordering, Everyday incarceration’, Transactions of the Institute of British Geographers, 44(1), pp. 48–62. Charlton, J. I. (1998) Nothing about us without us: Disability, oppression and empowerment. London: University of California Press. Connell, R. (2007) Southern theory: The global dynamics of knowledge in social science. Cambridge: Polity Press. Connell, R. (2011) ‘Southern bodies and disability: Re-thinking concepts’, Third World Quarterly, 32(8), pp. 1369–1381. Cosgrove, L. et al. (2020) ‘A critical review of the Lancet Commission on global mental health and sustainable development: Time for a paradigm change’, Critical Public Health, 30(5), pp. 624–631. Crawley, H., and Skleparis, D. (2018) ‘Refugees, migrants, neither, both: Categorical fetishism and the politics of bounding in Europe’s ‘migration crisis’’, Journal of Ethnic and Migration Studies, 44(1), pp. 48–64. Available at: 10.1080/1369183X. 2017.1348224 Crock, M., Smith-Khan, L., and Saul, B. (2017) The legal protection of refugees with disabilities: Forgotten and invisible?. Cheltenham: Edward Elgar Publishing. Dolmage, J. (2018) Disabled upon arrival: Eugenics, immigration and the construction of race and disability. Columbus: Ohio State University Press. Dowling, S. (2017) ‘Disability and unsafe migration: Data and policy, understanding the evidence’, in Global Migration Data Analysis Centre (ed.) Data briefing series. Geneva: International Organization for Migration. Driedger, D. (1989) The last civil rights movement: Disabled people’s international. London: Hurst and Company. El-Lahib, Y., and Wehbi, S. (2012) ‘Immigration and disability: Ableism in the policies of the Canadian state’, International Social work, 55(1), pp. 95–108. Available at: 10.1177/002087281140794 El-Lahib, Y. (2016) ‘Troubling constructions of Canada as a ‘land of opportunity’ for immigrants: A critical disability lens’, Disability & Society, 31(6), pp. 758–776. Emery, D., and Iyer, S. (2022) ‘Deaf migration through an intersectional lens’, Disability and Society, 37(1), pp. 89–110. European Union Agency for Fundamental Rights (2016) ‘Thematic focus: Migrants with disabilities’. Available at: http://fra.europa.eu/en/theme/asylum-migrationborders/overviews/focus-disability Frederick, A., and Shifrer, D. (2019) ‘Race and disability: From analogy to intersectionality’, Sociology of Race and Ethnicity, 5(2), pp. 200–214. Available at: 10.1177/2332649218783480 Gentleman, A. (2019) The Windrush betrayal: Exposing the hostile environment. London: Faber and Faber.

Migration studies and disability studies

215

Ghai, A. (2012) ‘Engaging with disability with postcolonial theory’, in Goodley, D., B. Hughes and L. David (eds.) Disability and social theory: New developments and directions. pp. 270-286. London: Palgrave Macmillan. Grandi, F. (2022) News comment: UNHCR’s Grandi fears UK legislation will dramatically weaken refugee protection. UNHCR US. Available at: https://www. unhcr.org/us/news/news-releases/news-comment-unhcrs-grandi-fears-uk-legislationwill-dramatically-weaken-refugee Grech, S. (2015) ‘Decolonising eurocentric disability studies: Why colonialism matters in the disability and global south debate’, Social Identities, 21(1), pp. 6–21. Grech, S. (2016) ‘Disability and poverty: Complex interactions and critical reframings’, in S. Grech and K. Soldatic (eds.) Disability in the Global South: The critical handbook. pp. 217–235. Cham: Springer International Publishing. International Disability Alliance (2021) ‘Towards COP26: Enhancing Disability Inclusion in Climate Action, Disability Inclusive Climate Action COP26 Advocacy paper’. Available at: https://www.internationaldisabilityalliance.org/sites/default/ files/cop26_advocacy_paper_0.pdf International Office for Migration (IOM) (2019) ‘Glossary on Migration International Migration Law 34’. Available at: https://publications.iom.int/ books/international
migration
law
ndeg34
glossary
migration International Organization for Migration (2022) ‘Missing Migrants project’. Available at: https://missingmigrants.iom.int/ Isaacs, A. et al. (2022) ‘‘I don’t think there’s anything I can do which can keep me healthy’: How the UK immigration and asylum system shapes the health and wellbeing of refugees and asylum seekers in Scotland’, Critical Public Health, 32(3), pp. 422–432. Izaguirre, L., and Walsham, M. (2021) ‘South-south migration from a gender and intersectional perspective: An overview’, MIDEQ Working Paper, MIDEQ. Available at: https://www.mideq.org/en/resources-index-page/south-south-migration-genderand-intersectional-perspective/ Jampel, C. (2018) ‘Intersections of disability justice, racial justice and environmental justice’, Environmental Sociology, 4(1), pp. 122–135. Jote, T., and Tekle, M. (2022) A review of disability inclusion for refugees in Ethiopia and recommendations for future practice. London: EU Trust Fund for Africa (Horn of Africa Window) Research and Evidence Facility. Kim, K. M. (2011) ‘‘I never expected to be a disabled person in another country’: The stories of migrant workers with acquired disabilities in Korea’, Disability & Society, 26(5), pp. 553–566. Mainwaring, Ċ., and DeBono, D. (2021) ‘Criminalizing solidarity: Search and rescue in a neo-colonial sea’, Environment and Planning C: Politics and Space, 39(5), pp. 1030–1048. Available at: 10.1177/2399654420979314 Marshall, T. H. (1950) ‘Citizenship and social class’, in T. H. Marshall (ed.) Citizenship and social class, and other essays. Cambridge: Cambridge University Press. Mayblin, L. (2019) Impoverishment and Asylum: Social policy as slow violence. Abingdon: Routledge. Mayblin, L., and Turner, J. (eds.) (2021) Migration studies and colonialism. Cambridge: Polity. Mbembe, A. (2003) ‘Necropolitics’, Public Culture, 15(1), pp. 11–40. Meekosha, H. (2011) ‘Decolonising disability: thinking and acting globally’, Disability and Society, 26(6), pp. 667–682. Migration Data Portal (2021) ‘Disability and human mobility’. Available at: https:// www.migrationdataportal.org/themes/disability-and-human-mobility

216

Nicola Burns

Mitchell, D., and Snyder, S. (2003) ‘The Eugenic Atlantic: Race, disability, and the making of an international Eugenic science’, Disability & Society, 18(7), pp. 843–864. Available: 10.1080/0968759032000127281 Nellums, A. et al. (2018) ‘Access to healthcare for people seeking and refused aylum in Great Britain: A review of the evidence’ Research Report 121, Equality and Human Rights Commission. Available at: https://www.equalityhumanrights.com/ sites/default/files/research-report-121-people-seeking-asylum-access-to-healthcareevidence-review.pdf Nguyen, X. T. (2018) ‘Critical disability studies at the edge of global development: Why do we need to engage with Southern theory?’, Canadian Journal of Disability Studies, 7(1), pp. 1–25. Available at: 10.15353/cjds.v7i1.400 Norberg, I. (2022) ‘Austerity as bureaucratic violence: Understanding the impact of neoliberal austerity on disabled people in Sweden’, Sociology, 56(4), pp. 655–672. Office of the High Commissioner for Human Rights (ed.) (2017) ‘Addressing disabilities in large-scale movements of refugees and migrants’: The Committee on the Protections of the Rights of All Migrant Workers and Members of Their Families (CMW), and The Committee on Rights of Persons with Disabilities (CPRD). Available at: https://www.ohchr.org/sites/default/files/Documents/HRBodies/ CMW/JointStatementCMW-CRPDFINAL.pdf. Oliver, M. (1996) Understanding disability: From theory to practice. Basingstoke: Macmillan Press. Pearce, E. (2015) ‘‘Ask us what we need’: Operationalizing guidance on disability inclusion in refugee and displaced-persons programs’. Disability and the Global South, 2(1), pp. 460–478. Pearce, E., and Lee, B. (2018) ‘From vulnerability to resilience: Improving humanitarian response’, Forced Migration Review, 57, pp. 31–33. Available at: https://www. fmreview.org/sites/fmr/files/FMRdownloads/en/syria2018/pearce-lee.pdf Piacentini, T., Ohtani, E., and Clark, C. (2022) ‘Manifesto for change: Critical pedagogy for teaching and researching migration’. National Teaching Repository. Available at: 10.25416/NTR.20987374.v1 Pisani, M., and Grech., S. (2015) ‘Disability and forced migration: Critical intersectionalities’, Disability and the Global South, 2(1), pp. 421–441. Quinn, N. (2014) ‘Participatory action research with asylum seekers and refugees experiencing stigma and discrimination: The experience from Scotland’, Disability & Society, 29(1), pp. 58–70. Available at: 10.1080/09687599.2013.769863 Saltes, N. (2013) ‘‘Abnormal’ bodies on the borders of inclusion: Biopolitics and the paradox of disability surveillance’, Surveillance and Society, 11(1/2), pp. 55–73. Available at: 10.24908/ss.v11i1/2.4460 Shakespeare, T., Watson, N., and Alghaib, O. A. (2017) ‘Blaming the victim, all over again: Waddell and Aylward’s biopsychosocial (BPS) model of disability’, Critical Social Policy, 37(1), pp. 22–41. Available at: 10.1177/0261018316649120 Slaven, M. (2022) ‘The Windrush Scandal and the individualisation of postcolonoial immigration control in Britain’, Ethnic and Racial Studies, 45(16), pp. 49–71. Smith-Khan, L. et al. (2015) ‘To ‘Promote, Protect and Ensure’: Overcoming obstacles to identifying disability in forced migration’, Journal of Refugee Studies, 28(1), pp. 38–68. Soldatic, K., and Fiske, L. (2009) ‘Bodies ‘locked up’: Intersections of disability and race in Australian immigration’, Disability & Society, 24(3), pp. 289–301. Soldatic, K. (2020) ‘Disability’s circularity: Presence, absence and erasure in Australian settler colonial biopolitical population regimes’, Studies in Social Justice, 14(2), pp. 306–320. Stienstra, D. (2012) ‘Race/ethnicity and disability studies: Towards an explicitly intersectional approach’, in N. Watson, A. Roulstone and C. Thomas (eds.) Routledge handbook of disability studies. London: Routledge, pp. 376–389.

Migration studies and disability studies

217

Summerfield, D. (2013) ‘Global mental health is an oxymoron and is medical imperialism’, British Medical Journal, 346. Available at: 10.1136/bmj.f3509 Tyler, I. (2013) Revolting subjects: Social abjection and resistance in neoliberal Britain. London: Zed Books. United Nations (2006) Convention of the rights of persons with disabilities. Geneva: United Nations. United Nations High Commissioner for Refugees (2022) ‘Figures at a glance’. Available at: https://www.unhcr.org/uk/figures-at-a-glance.html United Nations Committee on the Rights of Persons with Disabilities (2017) ‘Concluding Observations on the initial report of the United Kingdom of Great Britain and Northern Ireland: Committee on the Rights of Persons with Disabilities’. United Nations. Available at: https://digitallibrary.un.org/record/1310654 Women’s Refugee Commission (2022) ‘Ukraine Policy Brief’. Available at: https:// www.womensrefugeecommission.org/wp-content/uploads/2022/04/Ukraine-policybrief-04.2022-1.pdf World Health Organization and World Bank (2011) World report on disability. Geneva: WHO. Yeo, R. (2017) ‘The deprivation experienced by disabled asylum seekers in the United Kingdom: Symptoms, causes, and possible solutions’, Disability & Society, 32(5), pp. 657–677. Available at: 10.1080/09687599.2017.1320268 Yuval-Davis, N., Wemyss, G., and Cassidy, K. (2018) ‘Everyday bordering, belonging and the reorientation of British immigration legislation’, Sociology, 52(2), pp. 228–244. Available at: 10.1177/0038038517702599

13

Colonial and ableist constructions of ‘vulnerability’ The impact of restrictive asylum conditions on disabled people in the United Kingdom and Germany Rebecca Yeo and Robel Afeworki Abay

Introduction Disabled people in the asylum system both in the United Kingdom and Germany are subject to multiple restrictions which hinder access to the services and support required to meet essential human needs. The intersection of these socially and politically constructed restrictions results in people being marginalised from both the disabled people’s movement and from migrant support organisations. A combination of precarious legal status and inadequate access to financial support, health services, and housing is such that people’s lives become systematically reduced to struggles for immediate survival (Köbsell, 2019; Lätzsch, 2020; Schülle, 2019; Yeo, 2015, 2017). However, it would be wrong to suggest that disabled people in the asylum system always, or inevitably, experience greater hardship than people facing restrictions associated with either disability or forced migration in isolation. There are some initiatives specifically targeted at people experiencing intersectional disadvantages both in Germany and in the United Kingdom. These initiatives draw heavily on discursive constructions of individual “vulnerability” (Korntheuer, Afeworki Abay, and Westphal, 2021). In this chapter, we critically engage with the intersectional othering embedded in constructions of “vulnerability” associated with disability and forced migration. Building on previous critiques of constructions of “vulnerability” (Morris, 2015; Sherwood-Johnson, 2013; Yeo, 2019), we argue that all humans are “vulnerable” but if access to essential services and support is restricted, then this innate “vulnerability” becomes more apparent and is amplified. Initiatives that focus on individual constructions of “vulnerability” distract attention from government policies which deliberately restrict access to the services and support necessary to meet human needs. If access to essential resources depends on being framed as “vulnerable”, the result is to reinforce regressive charity model approaches to disability in combination with racist and colonial stereotypes of helpless “victims” in need of saviours rather than people facing the injustices of systemic inequalities (Afeworki Abay and Wechuli, 2022). Rather than DOI: 10.4324/9781003280422-14

Colonial and ableist constructions of ‘vulnerability’ 219 contesting systemic restrictions, initiatives which rely on individual labels of exceptional “vulnerability” are promoted as if acts of charitable generosity in the context of hegemonic assumptions that the suffering associated with disability and forced migration are inevitable. This serves to silence people’s agency and the scope for collective resistance. Such silencing not only affects disabled people in the asylum system, but also hinders the capacity to learn from the insights of people with lived experience of intersectional marginalisation. We conclude our chapter by calling for the development of alternative approaches, bringing together the disabled people’s movement and anti-colonial and anti-racism campaigns in pursuit of intersectional equality and justice. Comparative perspectives on experiences of disabled people in the asylum system in Germany and the United Kingdom The structural barriers for disabled people in the asylum system are somewhat different in the United Kingdom and Germany; however, in both countries, people seeking asylum face restrictions in meeting human needs for physical and emotional wellbeing. Experiences of disabled people in the asylum system in Germany

Despite the normative and legal claims of the UN Convention on the Rights of Persons with Disabilities (UNCRPD, 2006) and the Directive of the European Parliament (2013/33/EU), the situation of disabled people in the asylum system remains precarious in Germany (Afeworki Abay, Schülle, and Wechuli, 2021). Structural barriers such as insecure legal status often hinder their participation in education and labour market (Afeworki Abay, 2022; Pieper and Haji Mohammadi, 2014), as well as access to social welfare and quality healthcare services (Lätzsch, 2020; Schülle, 2019; Schwalgin and Wank, 2017). It is estimated that approximately 10–15% of asylum seekers and refugees in Germany are disabled, yet there is an ongoing assumption that disabled people in the asylum system are particularly “hard to reach” groups (Afeworki Abay and Engin, 2019; Korntheuer, Afeworki Abay, and Westphal, 2021) which results in silencing their input in public discourse and research (see in this book: Afeworki Abay and von Unger). The invisibilisation process is part of dominant narratives of silencing, according to which asylum seekers and refugees are generally considered as “vulnerable”. Labelling disabled people in the asylum system as “vulnerable” can also contribute to concealing structurally determined precarious living conditions (Korntheuer, Afeworki Abay, and Westphal, 2021; Yeo, 2019) instead of tackling the structures which made such groups “vulnerable” to certain mechanisms of exclusion within the dominant able-bodyminded, white, middle-class society (Afeworki Abay, 2022). The presentation of disabled people in the asylum system as particularly in need of protection

220

Rebecca Yeo and Robel Afeworki Abay

(according to Directive 2013/33 EU) can be more effective, but only if this translates into correspondingly provision of assistance. Broader political demands, such as the UNCRPD, could also challenge the status quo and avoid reproducing constructions of “vulnerability” of disabled people in the asylum system (Afeworki Abay and Wechuli, 2022). In the last decade, there has been increased awareness within the German national political agenda of the need to provide services for disabled people in the asylum system. Nonetheless, disabled people in the asylum system are often invisible to the wider population, both in terms of statistical data as well as in public spaces (Afeworki Abay, Schülle, and Wechuli, 2021; Gag and Weiser, 2020; Köbsell, 2019; Lätzsch, 2020; Schwalgin and Wank, 2017). These disparities are exacerbated by intersectional discrimination and exploitation. For example, disabled women in the asylum system experience specific forms of discrimination beyond that experienced by the wider population of disabled people or refugees (Köbsell and Pfahl, 2015). The concept of intersectionality as an explanatory cause of the struggles faced by disabled people in the asylum system will be returned to. However, first, we turn to consider examples of lived experiences of disability and forced migration in the United Kingdom. Experiences of disabled people in the asylum system in the United Kingdom

The seminal work by Harris and Roberts in 2001 provided clear evidence of the marginalisation of disabled people in the asylum system in the United Kingdom. Ten years later, Straimer described the invisibility of disabled people in the asylum system, explaining that this ‘is not due to their absence, but due to the discrimination’ (Straimer, 2011, p. 538). Similarly, in 2013, the receptionist of a major United Kingdom refugee charity asserted that “disabled asylum seekers … don’t really exist” (Yeo, 2015). In the context of the COVID pandemic, parallels in the restrictions faced by disabled citizens and people seeking asylum were highlighted in a project in Bristol, United Kingdom1 (Redweather Productions, 2021). People were asked to contribute ideas and images to create a painted mural on the wall of Easton Community Centre in Bristol. Alongside the painting, each person was invited to contribute to a short film2 (Redweather Productions, 2021) explaining their messages in greater depth. This collaborative and creative research approach brought together people whose voices are rarely heard in the mainstream media. The images highlight the disabling impact of restricted access to services and support faced by people subject to the restrictions of the asylum system or the welfare system. The mural also makes clear that these injustices are not inevitable. In the centre of the mural, a silhouette of a woman is shown holding out some coins while a bus drives away without her. She explained that many services stopped accepting cash payment at the start of the pandemic, yet people seeking asylum in the United Kingdom are forbidden from opening bank accounts. She recalls feeling shame at having no bank card

Colonial and ableist constructions of ‘vulnerability’ 221 with which to buy a ticket. Without transport, it becomes harder to meet physical and emotional needs. People are thereby made more ”vulnerable” through the denial of services and support. The disabling impact of restrictions in the asylum system is further illustrated by the experiences of a person who is homeless asylum seeker. He wanted people to understand that his mental distress and poor physical health were caused by his living conditions. He appears three times in the mural. First, he is among a group of people happily chatting together. Next, he is shown with a small backpack leaving a house. He was made homeless after his asylum claim was refused. Finally, he is seen crouching in bushes where he was forced to sleep. Without food, shelter or hope for the future, he explained that asylum policy had caused him to become ill and to “lose [his] mind” (Yeo, 2022). A uniformed officer and a suited man stand together ignoring the homeless man. He and other contributors to the mural explained that these figures represent immigration officers and politicians, as well as all those in academia, local government, and the voluntary sector who collude with the police and government policy. The “slow violence” (Nixon, 2013) of living on the street causes illness, physical impairment, and mental distress. The asylum system in both the United Kingdom and Germany is systematically designed to restrict access to services and support and is therefore disabling. Current initiatives shaping the entitlements of disabled people in the asylum system To understand the political positioning of current initiatives associated with disability and forced migration, it is instructive to consider how understanding and perceptions of disability have changed in recent years. Charity and medical models of disability were hegemonic in the United Kingdom and Germany until the last decades of the twentieth century. These approaches presented the difficulties faced by disabled people as issues of individual tragedy or misfortune which might, or might not, be ameliorated by charitable donations or medical interventions. In 1976, a group of disabled people known as the Union of Physically Impaired Against Segregation (UPIAS) challenged the idea that the problems faced by disabled people could be located at the individual level. Instead, they argued that people are disabled by societal barriers and restrictions which can be changed (UPIAS, 1976). Disabled scholar and activist Mike Oliver (1981) built on their groundbreaking idea to develop what became known as the social model of disability. This approach became increasingly widely adopted until, at least in theory, it became the hegemonic and normative framework for disability (Oliver and Barnes, 2012). Even disability charities and government policy included reference to the social model to the extent that, according to Oliver (2013, p. 1025), they came to “act as if they invented it”. At an international level, the landmark UN Convention on the Rights of Persons with Disability

222

Rebecca Yeo and Robel Afeworki Abay

(UNCRPD, 2006) presented disability as an issue of human rights whereby there was collective responsibility to remove barriers. The Convention has been ratified by 181 countries at the time of writing (2022). At this stage, it appeared that medical and charity models of disability had been replaced by social or human rights model approaches. The apparent progressive shift represented by the UNCRPD has, however, occurred alongside increasing dominance of neoliberal reduction of state services (see, for example, Harvey, 2007). In the United Kingom, the reduction in services and support for disabled people has been so severe as to provoke a UN inquiry (2016) and subsequent condemnation for failure to meet its obligations under the UNCRPD. In the United Kingdom and Germany, there has been significant increase in the official acknowledgement of the existence of disabled people in the asylum system. However, in the context of ostensible international agreement on a rights-based focus on disability, it is notable that rather than contesting systematic intersectional restrictions, the hegemonic form of referring to the existence and needs of disabled people in the asylum system is with euphemistic labels of individual “vulnerability” and the adoption of a charity model approach. There are some initiatives to identify those individuals in the asylum system who are framed as particularly worthy, with frequent use of the label of individual “vulnerability”. Before considering how this regressive shift took place, it is necessary to consider some of the initiatives that currently exist in relation to disability and forced migration in the United Kingdom and Germany. Initiatives in Germany

The methodological and political discourse on “vulnerability” of disabled people in the asylum system in Germany goes along with the powerful constructions of these groups as “hard to reach” both for service providers and academic researchers (Afeworki Abay and Engin, 2019; Korntheuer, Afeworki Abay, and Westphal, 2021). What often remains unreflected within these hegemonic discourses on “vulnerability” is that these groups are made “vulnerable” through discourses, practices, and research projects that are embedded in othering and silencing (Afeworki Abay, 2022). The construction of “vulnerability” can also foster systematic exclusion from research, as disabled people in the asylum system are often portrayed (see in this book: Afeworki Abay and von Unger). The big question for researchers, service providers, and policy makers should therefore be: How to overcome exclusive structures of the contemporary global system of racialised capitalism that are rooted in the colonial hierarchies of human beings? In recent years, there has been increasing interest in German academic and political discourse to understand the intersectional relationship between forced migration and disability (Afeworki Abay and Wechuli, 2022;

Colonial and ableist constructions of ‘vulnerability’ 223 Köbsell, 2019). Similarly, many practitioners have sought to proactively identify specific needs of disabled people in the asylum system as well as to break down the systemic barriers to accessible information on the existing support structures. Accordingly, there has been a continuing exchange and networking between people working in the fields of disability and forced migration (Afeworki Abay, Schülle, and Wechuli, 2021; Köbsell, 2019). In doing research on these complex topics, disabled people in the asylum system should be recognised as experts of their own life situations fighting against structural barriers and intersectional discrimination. Although the EU Directive 2013/33 set standards for asylum seekers’ international protection and admission, empirical research projects and practice reports conclude that for disabled people in the asylum system, access to social and health services is particularly difficult (Afeworki Abay and Wechuli, 2022; Gräber, 2020; Schülle, 2017). The situation of disabled people in the asylum system in Germany remains precarious and identification of people’s needs has been insufficiently taken into account. Only in a few federal states has access to medical services been comprehensively designed for disabled people in the asylum system . In Bremen, Hamburg, and Berlin, this has been implemented; other federal states such as SchleswigHolstein and Thuringia have introduced the health card nationwide since 2016, and in some parts of North Rhine-Westphalia, Lower Saxony, and Brandenburg. However, in many places, there is limited access to health services, information, and therapy for asylum seekers and refugees (Afeworki Abay, Schülle, and Wechuli, 2021). The situation may be easier for some people than for others. People experiencing mental distress may find greater access to therapeutic support in larger cities compared with rural regions. However, access barriers for disabled people in the asylum system can be exacerbated by insufficient knowledge among service providers of issues of disability (Afeworki Abay, Schülle, and Wechuli, 2021; Gräber, 2020; Köbsell, 2019). In addition, the intertwining of the law on social integration and rehabilitation of disabled people (SGB IX, XII) and the legal arrangements for asylum seekers in Germany (esp. AufenthG, AsylbLG) is very complex (Gag and Weiser, 2020). Furthermore, disabled people in the asylum system may face specific intersectional barriers, including the lack of interpreters which may hinder access to therapeutic support. In recent years, some organisations for disabled people such as Lebenshilfe have created special services for people in the asylum system. The specialised centres of the supplementary independent counselling by disabled people for disabled people (EUTB) have also been able to expand their work, which is predominantly based on peer counselling. Training is needed for service providers in order to address the barriers faced by asylum seekers and refugees when seeking to access wider services for disabled people.

224

Rebecca Yeo and Robel Afeworki Abay

Initiatives in the United Kingdom

There has been a greater acknowledgement of the existence of disabled people in the asylum system in the United Kingdom over the last decade, albeit with the use of euphemistic labels which avoid reference to “disability” and obscure commonalities with the wider population of disabled people. The Immigration and Asylum Act 1999 withdrew the entitlement of people in the asylum system to access the welfare state. This included the removal of entitlement to financial support with which to meet additional costs associated with disability. Despite the life-changing impact of this change, there is no direct reference to disabled people in the legislation. People with these intersectional needs appear to be considered so insignificant as not to warrant mention. More recently, the Home Office issued guidance (Great Britain, the Home Office, 2018) as to provision for “asylum seekers with care needs” (emphasis added). Again, the term “disabled”, which could highlight wider legislative rights and potential peer support, was omitted. Nonetheless, there was increasing recognition of needs associated with disability in the context of forced migration. The Vulnerable Persons Resettlement Scheme (2014) was designed to select people fleeing the Syrian conflict for resettlement in the United Kingdom on the basis of apparent “vulnerability”. The motivation for this focus was ostensibly to prioritise people suffering most intensely from the restrictions and struggles of forced migration. The criteria of “vulnerability” was broad, including disabled people, as well as women, children, and older people. The term “vulnerable” became an increasingly hegemonic euphemism to refer to disabled people in the asylum system. A review by Shaw (2016) into the “Welfare in Detention of Vulnerable Persons” refers to the particularly negative impact of detention on mental health, but also states that “vulnerability is intrinsic to the very fact of detention”. This recognition that people are made “vulnerable” by the restrictions which are imposed on them did not appear to alter the focus of an inspection of the different Home Office approaches to the ‘identification and safeguarding of vulnerable adults’ by the Independent Chief Inspector of Borders and Immigration (Bolt, 2019). In a similar manner to Shaw’s report, this inspection concluded that immigration control measures which deny access to services can increase “vulnerability” and that there is an ‘emerging picture of negative outcomes linked to our system’ (Bolt, 2019, p. 18). However, these admissions that the system itself increases “vulnerability” do not result in recommendations for systemic change but for action to reduce the impact on those most affected. The objective of such action is made clear by the ICIBI (Bolt, 2019, p. 8), with reference to the need for the Home Office to recognise that meeting ‘the needs of “vulnerable” individuals is a test not just of its competence but also of its capacity for compassion, both of which have been questioned in recent months’. The purpose is therefore to enhance the credibility of the system.

Colonial and ableist constructions of ‘vulnerability’ 225 It could be argued that irrespective of the Home Office motivation, action to reduce the restrictions faced by disabled people in the asylum system should be applauded. In the context of ever more draconian restrictions imposed on asylum seekers, any mitigation, even for a few people, may be perceived as better than nothing. However, these initiatives can be no solution if they serve to enhance the credibility of ongoing inequalities and to reinforce regressive constructions of both disability and forced migration. Explanatory causes of the hegemonic regressive approach to disability and forced migration The use of labels of “vulnerability” in the asylum sector serves to avoid reference to disability. This obscures the association with wider struggles and achievements such as encapsulated in the UNCRPD. With the quest to understand the causes and consequences of the current regressive shift to charity model approaches of “vulnerability”, we put forward a number of potential contributing factors. Intersections of ableism and racism in the postcolonial moment

Using labels of “vulnerability” to refer to disabled people in the asylum system can be understood in relation to issues of ableism, racism, and the colonial legacy. Mbembe’s (2003) concept of Necropolitics offers a critical framework for analysing the impact of colonialism and racism in the context of migration regimes in Europe (Mayblin, Wake, and Kazemi, 2019). We extend Mbembe’s framework to include the impact of ableism. The potentially fatal consequences of the restrictions faced by disabled people in the asylum system can be understood as a form of Necropolitics or governing through death (Mayblin, Wake, and Kazemi, 2019). People in the asylum system in Europe are frequently ‘kept alive but in a state of injury, in a phantom-like world of horrors and intense cruelty and profanity’ (Mbembe, 2003, p. 21). Kurdish asylum seeker Kamil Ahmad provided a particularly gruesome and insightful example of this when he drew a picture of what he wanted other people to understand about his life. He explained, ‘This is my heart that has been stabbed with a dagger. The Home Office did this, I am bleeding and no one can stop it’ (cited by Yeo, 2017). This took place four years before he was stabbed to death in the United Kingdom. By rejecting Eurocentric approaches to what constitutes knowledge, decolonial interventions may contribute to foregrounding the insights of people with lived experience of intersectional discrimination. As Mbembe explains, in the context of colonialism, Necropolitics is the ‘ultimate expression of sovereignty’ (2003, p. 11) which ‘means the capacity to define who matters and who does not, who is disposable and who is not’ (p. 27). In demonstrating one historical example of colonial violence, Spivak (1988) has elucidated how colonised subaltern groups in general and Indian women in

226

Rebecca Yeo and Robel Afeworki Abay

particular were imagined in essentialist terms as being “victims”. The voices of sati women have been silenced within the particular prevailing colonial discourse during the British imperialism by overrepresenting the perspectives of the British imperialists. Such a construction of “vulnerability” and “victimhood” within the hegemonic paternalistic colonial discourse can be seen to have ongoing impact on marginalised people such as disabled people in the asylum system. Yet, it should be highlighted that marginalised and subaltern groups are not merely “victims” of oppressive systems. Instead, people develop collective strategies of resistance in challenging oppression and fighting for justice (Spivak, 1988). Nonetheless, until the immediacy of threats to survival is removed, people cannot be expected to lead the development of alternatives. Necropolitics forces people to focus on the struggle for survival, thereby stifling capacity for dissent. As Manjeet Kaur (cited by Yeo, 2020) explained, it required all her energy to keep her own raft afloat; therefore, living in more secure circumstances people must support the resistance and the development of alternatives. The impact of hegemonic framing of vulnerability

To label certain people as “vulnerable” implies that other people are not. It locates the problem at the level of the individual rather than the systematic restrictions that are faced. If apparent demonstration of compassion to selected “vulnerable” people is used to enhance the credibility of wider restrictions, then this may even hinder more fundamental systemic change. Irrespective of national context, if entitlement to support relies on exceptional “vulnerability”, then the survival of people facing systematic restrictions depends on foregrounding individual displays of such “vulnerability” rather than collective contestation of injustices (Ticktin, 2011). At the same time, policy makers and service providers become focussed on defining eligibility and identifying individuals perceived as deserving of support, with contestation focussed pragmatically on seeking adjustments to the criteria for “vulnerability” and associated entitlement rather than the seemingly intractable wider reduction of services and support. However, individualistic labels of exceptional intersectional “vulnerability” separate asylum people seeking from the wider movement of resistance and potential peer support of the disabled people’s movement (Yeo, 2019), as well as from anti-racist and anti-colonial struggles (Afeworki Abay and Wechuli, 2022). Labels of “vulnerability” are not only adopted by government and statutory service providers. Such labels also appear to highlight distinctions between organisations FOR and organisations OF disabled people. The charity Humanity for Inclusion (formerly Handicap International) takes a leading role in shaping voluntary sector work with disabled people in the asylum system in Germany. It operates with the strapline to work “alongside disabled and vulnerable people in situations of poverty and exclusion” (emphasis added). In contrast, the UNCRPD, which exists as a direct result

Colonial and ableist constructions of ‘vulnerability’ 227 of the campaigns and agency of disabled people, makes no reference to “vulnerability”, focussing instead on people’s rights. Similarly, the European Disability Forum promotes the rights, needs, and agency of disabled people, with frequent use of the motto “Nothing about us, without us”. The distinction between the work of charities and that of Disabled People’s Organisations can be seen as a reflection of difference between charity model and social model approaches. The individualistic approach of identifying “vulnerable” people may fit the common voluntary sector need for objectives that are Specific, Measurable, Achievable, Realistic, and Timebound (SMART). Such objectives may be more appealing to funders; however, these criteria may enable focus on small-scale individualistic adjustments rather than developing alternatives to deliberate restrictions and systemic inequalities. Intersectionality as an explanation of current struggles Disabled people in the asylum system clearly experience some restrictions in common with the wider population of disabled people (Clifford, 2020), asylum seekers, and refugees ( Goodfellow, 2019). However, disabled people in the asylum system are marginalised from the disability movement, as well as from the asylum sector and anti-racist groups. As explained by Manjeet Kaur, a disabled person in the asylum system living in Manchester, “I’m an asylum seeker, it changes everything” (Spencer and Yeo, 2013). Similarly, analysis of the so-called “migration crisis” in Germany in 2015 found particular disadvantage associated with the combination of disability, gender, and forced migration (Afeworki Abay, Schülle, and Wechuli, 2021; Schwalgin and Wank, 2017). The concept of intersectionality may help to explain these multiple forms of exploitation and discrimination. As argued by Patricia Hill Collins (1990) and Kimberlé W. Crenshaw (1989) with reference to race and gender, intersectional oppression is not limited to one form of discrimination in addition to another. Building on their analyses, Sarah Woodin (2014, p. 89) observes that ‘black disabled people may be marginalised by the disabled people’s movement due to racism and the anti-racist movement due to disablism’. Although the notion of intersectionality had its roots in radical black feminist activism, it has become adopted as a signifier of hegemonic concepts of diversity. Myra Marx Ferree (2013) argues that intersectionality has moved from being “a moment of resistance”, to become an element of “diversity”, understood as a “neoliberal approach to social inclusion”. If intersectionality is focussed on individual experiences of discrimination, the problem may appear as if an issue of group relations rather than the systemic inequalities of government policy. As Salem (2016, p. 415) argues, unless it is part of an anti-racist, postcolonial framework that ‘addresses relationships of power’, the concept of intersectionality becomes little more than a tool to extend capitalism to ever-wider populations. In relation to the injustices

228

Rebecca Yeo and Robel Afeworki Abay

associated with disability and migration status, the concept of intersectionality must be combined with understanding of capitalist inequalities if it is to contribute to a causal explanation. Segregation of refugees from the disabled people’s movement When disabled people in the UK faced draconian cuts to services and support as part of a programme of austerity (Cross, 2013; O’Hara, 2014; Ryan, 2019), protests took place using the slogan of the “hardest hit” (Gentleman, 2011). Yet, disabled citizens were not the “hardest hit”. People in the asylum system had faced greater restrictions for many years. Acknowledgement of the additional costs faced by disabled people seeking asylum had been removed in 1999, together with all rights to access the welfare state (Immigration and Asylum Act, 1999). The disabled people’s movement had not responded. Later, when the UK government signed the UNCRPD, it added a reservation excluding immigration issues from its obligations under the Convention. Again, the disabled people’s movement had not responded. The disabling impact of restrictions imposed on people in the asylum system was not framed as part of the agenda of the disabled people’s movement. The UK asylum sector has only begun to acknowledge the existence of disabled people in the asylum system facing exceptional levels of hardship in recent years (Yeo, 2015). However, instead of referring to people as “disabled” (and thereby associating with wider disability legislation, the UNCRPD, and the achievements of the disabled people’s movement), labels of “vulnerability” frame the issues as if distinct. Efforts to mitigate refugee’s struggles have been framed in isolation from the disabled people’s movement. Euphemistic labels of “vulnerability” are not used exclusively to refer to disabled people, but also to refer to women, children, “victims” of torture, and others considered to be particularly negatively impacted by the restrictions of the asylum system and to be worthy of some mitigation. As such, any action is framed as if innovative, a sign of generosity or kindness rather than in accordance with disabled people’s legal and human rights. Conclusion and way forward This chapter has highlighted the roots and consequences of discursive constructions of “vulnerability” in relation to disabled people in the asylum system. The intersectional restrictions and struggles that are faced are not inherent to issues of disability or forced migration. Instead, they are the result of political decisions, underpinned by socially constructed hierarchies of entitlement and labels of individual “vulnerability”. We argue that the regressive shift to a charity model approach has been enabled by the segregation of the asylum sector from the disabled people’s movement and is indicative of racist, neo-colonial framing of immigration issues.

Colonial and ableist constructions of ‘vulnerability’ 229 There are initiatives in the United Kingdom and Germany designed to reduce the particular disadvantages faced by selected individuals in the asylum system. These efforts rely on identification of individuals who are particularly “vulnerable” and therefore framed as “worthy” of support. The adoption of euphemistic labels of individual “vulnerability” obscures the systematic restrictions and resultant “slow violence” (Nixon, 2013) faced by disabled people in the asylum system in the United Kingdom and Germany. These approaches reduce the agency of people claiming asylum while framing the support that is provided as if an issue of the host country’s generosity rather than an issue of disabled people’s rights. The separation of disabled people in the asylum system from the achievements of the disabled people’s movement reinforces the notion that it is acceptable for people in the asylum system to receive less support than citizens, thereby hindering collective resistance and the development of collaborative movements for equality and justice. Policy and practice towards disabled people in the asylum system rely on regressive shifts to charity model approaches rather than building on the social and human rights models of disability enshrined in the UNCRPD. For the reasons outlined in this chapter, we argue that labels of individual “vulnerability” and the associated charity model approaches must be rejected. Instead, the insights and experiences of disabled people in the asylum system could help to build new forms of alliance, bringing together resistance against the oppression and inequalities associated with racism, neo-colonialism, and disability. Such intersectional resistance could result in a broader, more powerful movement of resistance with which to build equality and justice for all, irrespective of impairment, or migration status. Notes 1 http://www.disabilitymurals.org.uk/easton.php#mural 2 https://www.youtube.com/watch?v=tZup1OsoK0M

References Afeworki Abay, R. (2022) ‘Rassismus und Ableism: Same, same but different? Intersektionale Perspektiven und konviviale Visionen auf Erwerbsarbeit in der Dominanzgesellschaft’, in B. Konz and A. Schröter (eds.) DisAbility in der Migrationsgesellschaft: Betrachtungen an der Intersektion von Behinderung, Kultur und Religion in Bildungskontexten. Bad Heilbrunn: Klinkhardt, pp. 93–110. Afeworki Abay, R., and Wechuli, Y. (2022) ‘“We are here, because you were there”: Necropolitics as a critical framework for analysing the complex relationship between colonialism, forced migration and disability’, in A. Delic, I. Kourtis, O. Kytidou, S. Sarkodie-Gyan, U. Wagner, and J. Zölch (eds.) Globale Zusammenhänge, lokale Deutungen: Kritische Positionierungen zu wissenschaftlichen und medialen Diskursen im Kontext von Flucht und Asyl. Wiesbaden: Springer VS, pp. 25–36. Afeworki Abay, R., Schülle, M., and Wechuli, Y. (2021) ‘Decolonizing disability: Eine postkoloniale Reflexion auf Behinderung für die deutschsprachige Fluchtmigrationsforschung unter Berücksichtigung der intersektionalen Lebensrealitäten’, in M. Bach, L. Narawitz, J. Schröder, M. Thielen, and N.-M. Thönneßen (eds.)

230

Rebecca Yeo and Robel Afeworki Abay

FluchtMigrationsForschung im Widerstreit – Über Ausschlüsse durch Integration. Münster: Waxmann, pp. 117–130. Afeworki Abay, R., and Engin, K. (2019) ‘Partizipative Forschung: Machbarkeit und Grenzen. Eine Reflexion am Beispiel der MiBeH-Studie’, in B. Behrensen and M. Westphal (eds.) Fluchtmigrationsforschung im Aufbruch. Methodologische und methodische Reflexionen. Wiesbaden: Springer VS, pp. 379–396. Bolt, D. (2019) ‘An inspection of the Home Office’s approach to the identification and safeguarding of vulnerable adults’, in Independent Chief Inspector of Borders and Immigration (ICIBI) (eds.). London: UK Parliament. Clifford, E. (2020) The war on disabled people. Capitalism, welfare and the making of a human catastrophe. London: Zed Books. Collins, P. H. (ed.) (1990) Black feminist thought knowledge, consciousness, and the politics of empowerment. New York: Routledge. Crenshaw, K. W. (1989) ‘Demarginalizing the intersection of race and sex: A Black feminist critique of antidiscrimination doctrine’, University of Chicago Legal Forum, 139, pp. 139–168. Cross, M. (2013) ‘Demonised, impoverished and now forced into isolation: The fate of disabled people under austerity’, Disability and Society, 28, pp. 719–723. Directive 2013/33/EU of the European Parliament and of the Council of 26 June 2013 on common procedures for granting and withdrawing and withdrawing international protection (recast) (2013). Available at: https://eur-lex.europa.eu/ legal-content/en/TXT/?uri=celex%3A32013L0032 Disability and Migration: A mural for social change: Bringing together Deaf, Disabled and Asylum seeking people, 2021 (2021). Redweather Productions. Available at: https://www.youtube.com/watch?v=tZup1OsoK0M Ferree, M.-M. (2013) Inequality and intersectionality: Disentangling the politics of discourse. Intersectionality – A cross-disciplinary exchange. Brussels: Free University Brussels. Gag, M., and Weiser, B. (2020) ‘Leitfaden zur Beratung von Menschen mit einer Behinderung im Kontext von Migration und Flucht’, in Passage gGmbH, Caritasverband für die Diözese Osnabrück e.V. Available at: https://awo.de/index. php/leitfaden-zur-beratung-von-menschen-mit-einer-behinderung-im-kontext-vonmigration-und-flucht Gentleman, A. (2011) ‘Hardest Hit march brings disabled people out on to the streets’, The Guardian. 11 May. Available at: https://www.theguardian.com/ society/2011/may/11/hardest-hit-march-disabled-people Goodfellow, M. (ed.) (2019) Hostile environment: How immigrants became scapegoats. London and New York: Verso Books. Gräber, D. (ed.) (2020) Flüchtlingssozialarbeit im Kontext von Krankheit und Behinderung. Eine qualitative Studie zum professionellen Selbstverständnis von Sozialarbeitenden. Wiesbaden: Springer VS. Great Britain. The Home Office (2018) Asylum seekers with care needs. Version 2. Harvey, D. (ed.) (2007) A brief history of neoliberalism. Oxford: Oxford University Press. Immigration and Asylum Act (1999) c.33. London: TSO. Köbsell, S. (2019) ‘“Disabled asylum seekers? … They don’t really exist”. Zur Unsichtbarkeit behinderter Flüchtlinge im Hilfesystem und im behindertenpolitischen Diskurs, in M. Westphal and G. Wansing (eds.) Migration, Flucht und Behinderung. Wiesbaden: Springer VS, pp. 63–80. Köbsell, S., and Pfahl, L. (2015) ‘Behindert, weiblich, migriert – Aspekte mehrdimensionaler Benachteiligung’, AEP Informationen. Feministische Zeitschrift für Politik und Gesellschaft, 42(4), pp. 10–14.

Colonial and ableist constructions of ‘vulnerability’ 231 Korntheuer, A., Afeworki Abay, R., and Westphal, M. (2021) ‘Forschen in den Feldern von Flucht und Behinderung: Ein Vergleich von forschungsethischen Herausforderungen und notwendigen forschungspraktischen Rahmenbedingungen’, in J. Franz and U. Unterkofler (eds.) Forschungsethik in der Sozialen Arbeit: Prinzipien und Erfahrungen. Theorie, Forschung und Praxis der Sozialen Arbeit. Berlin: Barbara Budrich, pp. 229–242. Lätzsch, C. (2020) ‘Dimensions of health care and social services accessibility for disabled asylum seekers in Germany’, Health in Diversity–Diversity in Health. Wiesbaden: Springer VS, pp. 51–75. Mayblin, L., Wake, M., and Kazemi, M. (2019) ‘Necropolitics and the slow violence of the everyday: Asylum seeker welfare in the postcolonial present’, Sociology, 54(1), pp. 107–123. Mbembe, A. (2003) ‘Necropolitics’, Public Culture, 15(1), pp. 11–40. Morris, J. (2015) ‘Please don’t talk about the most vulnerable’, Available online: https://jennymorrisnet.blogspot.com/2015/09/please
dont
talk
aboutmost
vulnerable.html Nixon, R. (2013) Slow violence and the environmentalism of the poor. London: Harvard University Press. O’Hara, M. (ed.) (2014) Austerity Bites. A journey to the sharp end of cuts in the UK. Bristol: Policy Press. Oliver, M. (1981) ‘A new model of the social work role in relation to disability’ in J. Campling (ed.) The handicapped person: A new perspective for social workers. London: RADAR, pp. 19–32. Oliver, M. (2013) ‘The social model of disability: Thirty years on’, Disability and Society, 28, pp. 1024–1026. Oliver, M., and Barnes, C. (2012) ‘Back to the future: The world report on disability’, Disability and Society, 27, pp. 575–579. Pieper, M., and Haji Mohammadi, J. (2014) ‘Partizipation mehrfach diskriminierter Menschen am Arbeitsmarkt. Ableism und Rassismus - Barrieren des Zugangs’, in G. Wansing and M. Westphal (eds.) Behinderung und Migration - Inklusion, Diversität, Intersektionalität. Wiesbaden: Springer VS, pp. 221–251. Ryan, F. (ed.) (2019) Crippled. Austerity and the demonization of disabled people. London and New York: Verso Books. Salem, S. (2016) ‘Intersectionality and its discontents: Intersectionality as traveling theory’, European Journal of Women’s Studies, 25, pp. 403–418. Schülle, M. (2017) ‘Geflüchtete Menschen mit Behinderungen – Versorgungslage, Zugang zum Hilfesystem und Unterbringung’, Recht und Praxis der Rehabilitation, 3, pp. 21–29. Schülle, M. (2019) ‘Medizinische Versorgung behinderter Menschen, die Leistungen nach dem Asylbewerberleistungsgesetz erhalten – juristische und praktische Barrieren der Barrierefreiheit’, in M. Westphal and G. Wansing (eds.) Migration, Flucht und Behinderung: Herausforderungen für Politik, Bildung und psychosoziale Dienste. Wiesbaden: Springer VS, pp. 145–165. Schwalgin, S., and Wank, R. (2017) ‘Stellungnahme zum Thema Flüchtlinge mit Behinderung für das Deutsche Institut für Menschenrechte’. Available online: https:// www.netzwerk-iq.de/fileadmin/Redaktion/Downloads/Fachstelle_Einwanderung/ TT8/Fachstelle_Einwanderung_8.Thementage_Stellungnahme_DIMR_Handicap_ International_2017.pdf Shaw, S. (2016) ‘Review into the welfare in detention of vulnerable persons’, in A Report to the Home Office (eds.). Sherwood-Johnson, F. (2013) ‘Constructions of ‘vulnerability’ in comparative perspective: Scottish protection policies and the trouble with ‘adults at risk’’, Disability and Society, 28(7), pp. 908–921.

232

Rebecca Yeo and Robel Afeworki Abay

Spencer, F., and Yeo, R. (2013) ‘‘I’m an asylum seeker, it changes everything’’. Bristol: Redweather Productions. Spivak, G. C. (1988) Can the subaltern speak? Wien and Berlin: Turia and Kant. Straimer, C. (2011) ‘Between protection and assistance: Is there refuge for asylum seekers with disabilities in Europe?’, Disability and Society, 26(5), pp. 537–551. The Home Office and the Rt Hon James Brokenshire MP (2014) Vulnerable Persons Relocation Scheme for Syrian Nationals. Ticktin, M. (2011) Casualties of care: Immigration and the politics of humanitarianism in France, Los Angeles and London. Berkeley and Los Angeles, CA: University of California Press. UN Committee on the Rights of Persons with Disabilities (2016) Inquiry concerning the United Kingdom of Great Britain and Northern Ireland carried out by the Committee under Article 6 of the Optional Protocol to the Convention. Union of the Physically Impaired Against Segregation (UPIAS) (1976) Aims and policy statement. London: Union of the Physically Impaired Against Segregation. United Nation Convention on the Rights of Persons with Disabilities (2006). Available at: https://www.un.org/development/desa/disabilities/convention-onthe-rights-of-persons-with-disabilities.html Woodin, S. (2014) ‘Intersectionality’, in C. Cameron (ed.) Disability studies: A students guide. London: Sage Publications. Yeo, R. (2015) ‘Disabled asylum seekers? They don’t really exist’: The marginalisation of disabled asylum seekers in the UK and why it matters’, Disability and the Global South, 2(1), pp. 523–550. Yeo, R. (2017) ‘Kamil Ahmad: Failed by the Home Office, then murdered in Bristol’, The Guardian. Available at: https://www.theguardian.com/commentisfree/2017/ oct/18/murdered-asylum-seeker-kamil-ahmad-failed-britain Yeo, R. (2019) ‘The regressive power of labels of vulnerability affecting disabled asylum seekers in the UK’, Disability and Society, 35(4), pp. 676–681. Yeo, R. (2021) The disabling borders of nation. An exploration of the causes, impact and possible alternatives to current intersectional inequalities associated with disability and forced migration in the UK. PhD thesis. University of Bath. Yeo, R. (2022) ‘The power of collaborative art in research for social change’. Migration Mobilities Bristol, 8 March. Available at: https://migration.bristol.ac. uk/2022/03/08/the-power-of-collaborative-art-in-research-for-social-change/ Yeo, R. (2020) ’The regressive power of labels of vulnerability affecting disabled asylumseekers in the UK’, Disability & Society, 35(4), pp. 676–681.

14

Towards a decolonial approach to disability as knowledge and praxis Unsettling the ‘colonial’ and re-imagining research as spaces of struggles Xuan Thuy Nguyen

Introduction In 2021, the United States (US) Institute of Peace launched the Vietnam War Legacies and Reconciliation Initiative. The multi-year initiative, which was authorised by the US Senate, enabled the US Government to assist Vietnam in addressing their shared legacies of war. The initiative aimed to foster greater dialogue, collaboration, and reconciliation between the two countries (United States Institute of Peace, 2021). This was most evident through their development of strategic programmes used to identify missing personnel during the war (United States Institute of Peace, 2021). This was seen as a crucial step towards ‘deep reconciliation’ and relationship building. While such bilateral initiatives can be useful for redressing some of the legacies of war, the politics of disability and impairment was entirely missing from this agenda, and the discourse of Agent Orange was primarily framed in terms of international development. Agent Orange is one of the most toxic herbicides containing dioxin that was used by American forces during the Vietnam War (History.com, 2019). The herbicide was later found to have caused serious health issues, including cancer, birth defects, and many psychological and neurological issues for millions of affected individuals and communities (History.com, 2019). While disabled people impacted by Agent Orange are usually marginalised from disability politics, their fight for justice has been a part of the transnational struggle to redress the legacies of war (Soldatic and Grech, 2014). Within the context of this transnational initiative, however, the struggles of Agent Orange affected people have been marginalised. The programme used the discourse of ‘reconciliation’ to reform the States’ bilateral relationships rather than address the historical impacts of Agent Orange on disabled bodies and communities affected by it. Efforts to create dialogue between experts in the US and Vietnam provided the US with a political space for restructuring its geo-political position in Asia. And yet, much less emphasis has been put on engaging with the lived experiences and perspectives of individuals affected by this historical conflict. By failing to address the socioDOI: 10.4324/9781003280422-15

234

Xuan Thuy Nguyen

political factors that shape the concept of disability and impairment caused by the impacts of Agent Orange, the bilateral initiative risks reinforcing a ‘colonial matrix of power’ (Mignolo and Walsh, 2018) and concealing imperialist productions of disability from the conversation. It is critical, then, to reflect on this transnational effort towards reconciliation in relation to the ‘place of disability’ (Goodley and Swartz, 2016) in the Global South through counter stories (Padilla, 2021), which centre and create spaces for decolonial struggles. Why do we need to re-visit this site of struggles? What does this mean for critical disability studies to reflect on the war legacies in a transnational context? Clearly, the lived experiences of disabled women and girls in the Global South are complex. Their experiences with disability, class, ethnicity, and gender oppressions intersect with colonial and imperialist violence, creating multiple sites of struggles. And yet, Western perspective of disability tends to treat the reality of those living with disabilities in the South as monolithic and, sometimes, absent. In an event on the ‘Future of Disability Studies’, organised by the disability studies programme at the University of California, Los Angeles (UCLA) in the United States in 2022, critical disability studies scholar Rosemarie Garland Thomson and disability activist Yomi Wrong offered perspectives on disability politics from their long-term experiences as scholars and activists. During the discussion, a question was raised regarding the production of impairments in Global South contexts. The question appeared to be raised from a non-Western graduate student. Interestingly, the question was met with complete silence by the speakers. There was no discussion regarding the consequences of imperialist violence on the production of impairment in Southern spaces. The long-term struggles of Southern scholars and activists in reclaiming decolonial spaces for Southern knowledges were completely ignored. What seems to be absent from this conversation on the future of (Western) disability studies is a lack of willingness to engage with the politics of disability in distinctive geo-political contexts. The silence at the event reflected the epistemic ignorance commonly seen by scholars and activists in Western disability studies when engaging with colonial/decolonial spaces that produce disability and disablement. In fact, while critical disability theorists from the Global North have advanced social justice movements by reclaiming and centring disability theory and praxis, writings in Western disability studies tend to assume that spaces located in North American and Western European nation-states are universal. This ‘claim to universality’ (Connell, 2007) renders non-Western forms of knowledge-praxis invisible. As Grech (2015) observes, what we are faced with, then, is ‘the continued dominance of western knowledge in global disability studies’ (p. 50). This is reiterated by Southern disability studies scholar Swartz (2018), who states that: [M]ost of academic writing about disabled people in the Global South is written by people from the Global North, some of them disabled and

A decolonial approach to disability as knowledge and praxis

235

some not. Disabled people in the Global South, whether written about, or filmed or photographed, commonly enter the world of the ‘global’ through the intervention of people in the north (p. 281). Swartz’s argument on the politics of representation in disability studies reflects epistemic injustice in disability studies towards those in the Global South (Mignolo and Walsh, 2018). What is urgent for disability studies scholarship in transnational contexts, then, is to decolonise the knowledge practice which excludes and marginalises Southern bodies and epistemologies, in so doing re-centring spaces for disability theory and praxis from the South to re-emerge as a form of epistemic struggle (Connell, 2007; de Soussa Santos, 2018). In this chapter, I reflect on the geo-political productions of disability and impairment through my engagement with the narratives of disability in distinctive contexts in Vietnam as a part of the Global South. I refer to the Global South as geo-political spaces historically colonised and/or controlled by western imperialist nations, since the colonial conquest in the 16th century in the Americas and the 19th and 20th centuries in Asia and Africa. The Global South is often contrasted with the Global North to highlight patterns of inequalities relating to wealth, power, and cultural influence (Connell, 2007; Dados and Connell, 2012). Grounding my observation and analysis within Vietnamese contexts, I rhetorically deploy the geo-political conditions of war as the context that produced disabled bodies. I interrogate this narrative of victimhood that is usually articulated by international agencies by re-engaging with creative and imaginary narratives of disabled girls and women affected directly and indirectly by war. This offers an alternative way of reframing disability as a space for knowledge creation in a way that allows us to disrupt colonial and neo-colonial narratives on ‘helping’ victims of war, while at the same time creating decolonial spaces for disabled women and girls in the Global South to reframe the conversation on disability and Agent Orange from their own perspectives. This chapter draws on research field notes, interview data, and drawings produced by women and girls who believed that they or their family members were exposed to Agent Orange.1 I suggest that Decolonial Disability Studies, as a field/subfield of inquiry, have the potential to resist the confluence of colonial and imperialist contexts by engaging women and girls with disabilities and creating spaces for their inclusion, which can help foster their leadership and activism within their respective communities. Fieldnotes in Dong Son – A Luoi In the summer of 2019, my research team and I visited the commune of Dong Son in a mountainous area located in Central Vietnam. We visited a young woman with disabilities who participated in our research project in A Luoi district, Transforming Disability Knowledge, Research, and Activism (TDKRA).

236

Xuan Thuy Nguyen

I first met Thanh during a field trip in 2015. As a member of A Luoi Blind Association, she expressed her interest in participating in this project from the very first meeting. I learned about her struggles for inclusion in school and her interest in advocating for her rights to education. Thanh had to leave the project early due to a brain tumour that had developed in her childhood and had become more severe, leading to her loss of vision and regular hospitalisations. As we approached the Dong Son commune, the local villagers showed us some of the multiple spaces where the Vietnam–US conflict took place. Between 1961 and 1971, the American Air Force sprayed 20 million gallons of various types of herbicide all over Vietnam, Laos, and Cambodia, causing serious health and environmental consequences for local Vietnamese people and their communities (history.com). Located at the border between Vietnam and Laos within the A Sau Valley, Thanh’s community was the hardest hit by Agent Orange. On the trip to Thanh’s home, we saw signs of the bomb remnants, with holes scattered all over the dry, empty fields throughout the community. We went to the area where the US airstrikes took place. Just a couple of kilometres away from her home was a storage place for dioxin. We got out of the car to approach the storage area, but a sign outside read ‘No Entrance’, prohibiting us and other civilians from going inside. Figure 14.1 shows this space of exclusion. The ‘no entrance’ sign is an interesting signifier of something not passable – it signals a forbidden place (Figure 14.2). The sign warns us of potential danger

Figure 14.1 A map of Dong Son commune, A Luoi district, Thua Thien Hue Province. Source: https://tinbds.com/thua-thien-hue/a-luoi/xa-dong-son.

A decolonial approach to disability as knowledge and praxis

237

Figure 14.2 A site with ‘no entrance’ in Dong Son commune. Source: Photo credit by the author.

that may take place and prevents us from crossing the boundary that has been put up. And yet, among the bald hills with signs of danger which evoke a sense of death, hundreds of families are struggling to survive. What remains invisible are signs of socio-political struggles associated with human costs that local people, including Thanh and her family, still endure every day. Indeed, between what is supposed to be safe and unsafe is not just the barbed wire. It also embodies signs of struggles that reflect spaces of exception within the disability politic: what I mean is that despite the everyday struggles of a community vastly devastated by war, the disability rights movement has failed to achieve justice for those impacted by dioxin and other colonial and imperialist violence. As the level of dioxin remains unknown for scientific communities and local authorities, the lives of local people who live just a couple of hundred metres away remain under siege. These cultural signs brought us back to some of the most challenging times of the US–Vietnam War. The impact of war legacies on human bodies may not be quantified in numbers; however, even when war has ended, its structures of power continue to linger on human and non-human bodies. As I stood in the valley 45 years after the end of the US–Vietnam War, one thing became vividly apparent – young people continue to grow up, but the impact of this war on their lives is far from over.

238

Xuan Thuy Nguyen

Theorising decolonial disability knowledge and praxis What does it mean to reflect on this historical memory? How can we encounter, engage, and learn from the experiences of people with disabilities and marginalised groups who have lived through such struggles? Does this reflection do any justice at all to communities and individuals who have encountered so much violence? Whose stories matter, and why? Stories about the Global South have been historically produced by scholars and activists in the North through epistemological privileges, which scholars in the North tend to assume (Nguyen, 2018). This epistemic injustice extends into disability studies through the coloniality of power embedded within Western and Eurocentric disability studies (Grech, 2015). In fact, as reflected in the silences of the global politics of impairment from, for example, the ‘Future of Disability Studies’ lecture series at the UCLA, Eurocentric frameworks and knowledge practices continue to be the norm in disability studies, while knowledge that has emerged from and by scholars and activists in the Global South is usually seen as irrelevant to disability scholars or activists in the Global North. As such, learning with and from the spaces where marginalised people from the global South have experienced colonisation and exclusion is an important initial step towards epistemic struggles that allow us to interrogate the coloniality that continues to linger in every aspect of our lives (Mignolo and Walsh, 2018). Coloniality is a short term for what Mignolo and Walsh (2018, p. 114) calls the ‘Colonial Matrix of Power’, a global westernising project that emerged within the discursive formation of Western modernity in the 16th century. Coloniality has continued to ‘mutate’ itself in the modern context through the narratives of ‘civilising mission’ and ‘progress’ in the 19th century and ‘development’ in the second half of the 20th century. Thus, despite non-Western nation-states’ project of decolonisation, coloniality still exists in many aspects of our lives through its structures of power. In contrast, decoloniality is a project that emerges outside of the nationstate to unsettle the colonial matrix of power and re-define its modes of reexistence. This form of articulation resists Global North’s epistemic and political imposition. Emerging in translocal struggles of racialised and Indigenous people’s resistance to historical and ongoing colonial relations in the Americas and transnationally, the concept of decoloniality refers to ways of thinking, knowing, being, and doing that derive from and respond to coloniality and its ongoing struggles (Mignolo and Walsh, 2018). Thus, decoloniality can decentre and delink the epistemic and political project of Western modernity through a different kind of geopolitics: the geopolitics of the body, one that does not operate within the sphere of nation-states (Mignolo, 2009, p. 41). From these scholars’ perspectives, then, decoloniality is a form of struggle(s) for liberation – including epistemic, political, and economic forms of struggles. In a decolonial thinking, Mignolo and Walsh (2018) write, ‘the thinking is not

A decolonial approach to disability as knowledge and praxis

239

to write about, nor to develop a narrative by simply citing a plethora of authors, contexts, and texts. Rather, it is to think from and with standpoints, struggles, and practices’ (p. 20). To decolonise disability studies, then, it is not enough to cite Southern scholars or texts produced by academics in the Southern spaces; rather, decolonial disability studies (Nguyen, 2023) must derive from the local and transnational efforts to reframe the conversation on disability studies through struggles: it emerges from perspectives, discourses, and forms of praxis that disabled people and their communities in the South have created from their own standpoints. Thinking from and with the margins, the subaltern, and the excluded, then, can create openings for a decolonial theory and praxis. Citing the work of decolonial theorist Leanne Simpson, Mignolo and Walsh (2018) write, ‘We cannot just think, write, or imagine our way to a decolonised future. Answers on how to re-build and how to resurge are therefore derived from a web of consensual relationships that is infused with movement through lived reality and embodiment’ (p. 18). Praxis is fundamental to decolonial thinking because it enables us to combine thinking, doing, and re-imagining with consciousness and practice. However, while ‘the body’ in Mignolo’s decolonial framework is the racialised and sexualised body, I suggest that such disability politics does take a critical role in decolonial praxis. Current decolonial theorists tend to disengage with disability politics, and yet, when disability is involved in decolonial writings, representations of disability tend to be re-inscribed in their writings as a space of exception (Padilla, 2021). Such representations tend to evoke feelings of ethical and emotional abjection infused with a sense of monstrosity and abnormality usually depicted within Western writings. Padilla (2021) goes further by arguing that while there is an interplay between the literature on disability and decoloniality, there continue to be nuances among these spaces. The imposition of Global North epistemologies on the South tends to be counterintuitive as it erases Southern epistemologies and contexts. Instead of being a unidirectional mode of colonial imposition, however, Padilla suggests that there is a lot of ambiguity and emotionality in the production of precarious materiality within what he calls inter-imperialist spaces – one that marks ambiguous relationships between spaces, bodies, epistemologies, and geopolitics in ways that reproduce epistemic and social injustice in the South. What is most significant, then, is that decolonial theory and praxis make visible the exclusion and marginalisation that have been masked by the colonising process through efforts to delink with the ‘coloniality of power’2 (Quijano, 2000) that is embedded within Western modern thoughts and practices and to generate new forms of knowledge from within its movements and struggles. Queer theorist Jasbir Puar, in her 2017 book, The Right to Maim: Debility, Capacity and Disability, offers a post-colonial perspective on the politics of disability and debilitation in the context of Palestinian struggles against settler colonialism. The ‘right to maim’ is a powerful articulation of the decolonial struggles in that it rejects Western

240

Xuan Thuy Nguyen

disability studies’ stance on disability as a humanist discourse that reclaims disabled identities. Instead, Puar argues that the settler state has rendered colonised bodies debilitated through its ‘war machine’ – one that functions to kill and to let certain bodies survive but become disabled. Despite liberal discourse that has been advanced within the context of disability rights, the transnational struggle for rights has failed to challenge the ways in which settler colonialism has functioned under the capitalist regimes that rendered colonised bodies debilitated through its military operations. Puar’s work is timely for understanding the limits of Western disability studies in the context of transnationalism, and yet, what seems to be missing in Puar’s work is the author’s lack of engagement with the transnational disability movements to tackle colonial subjugation and re-invent decolonial possibilities for re-imagining the politics of disability outside of the Western spaces. Clearly, then, decoloniality is not a totalising concept. Rather, it is contextually and relationally driven within specific colonised spaces. This project should not be universally applied to non-Western concepts without considering specific contexts and geo-political conditions in which decolonial praxis has taken place. Specifically, while the project of decoloniality emerged out of the struggles to unsettle the coloniality of power of Western regimes of knowledge, this project is distinctive from different contexts in the South. Thus, rather than assuming that Latin America’s and Palestinian decolonial struggles can be applied to other colonised contexts in the globe, I suggest that decoloniality is an option that invites us to re-visit the limits of Western epistemologies by re-examining and re-evaluating specific ways in which coloniality has exercised its power and control on disabled, racialised, gendered, and transgendered bodies in colonised and imperialist spaces and to create an alternative space and frame of reference for historically silenced, marginalised, and excluded individuals and groups to reframe their perspectives and praxis. In what follows, I will focus on the decolonial struggles from the perspectives of women and girls with disabilities in Vietnam as a way of exemplifying the potential of decolonial disability studies in engaging with forms of struggles to re-create the decolonial otherwise. Context

Girls and young women with disabilities in Vietnam, including those from ethnic minority groups, have been largely invisible in the nation’s historical struggles for liberation. The disability movement in Vietnam emerged in the 1980s under an advocacy agenda led by a group of physically disabled students in Hanoi; however, it was only during recent years that disabled girls and women were included in public discourses such as state’s media. Additionally, while the current disability rights movement has been more forceful in raising disability awareness through it agendas, this movement has been framed largely by competing discourses and programmes on disability

A decolonial approach to disability as knowledge and praxis

241

rights, development, and social assistance/charity, creating a governmental practice wherein the charity and development discourses have been applied to the inclusion of disabled people in public policies and programmes (see Nguyen, 2015). Operationalised through internationally funded programmes such as the United States Agency for International Development, Norwegian Mission Alliance in Vietnam, Caritas Vietnam, and Child Fund, these programmes have been localised through activities led by international and local non-governmental organisations, as well as Disabled People’s Organisations, engendering an inclusive development agenda that, ironically, does not include or represent women and girls with disabilities across different classes, ages, genders, disabilities, and ethnic lines. Emerging after the wars with the Chinese and Western imperialism over many centuries of struggles, post-colonial Vietnam has aimed to embody the cultural politic of a modern state by adopting socialist governance. Its efforts to rehabilitate the nation’s wounds after the colonial and imperialist wars have been coupled with a modernist ideology, that is, to cure, fix, and erase disability by deploying its bio-medical regimes of cure and rehabilitation. Ablenationalism – a modernist project of nation-states that shapes and naturalises able-bodied norms of inclusion by treating disability as an exception (Snyder and Mitchell, 2010) – operates through the ideologies of recapacitating disabled bodies (Puar, 2017). As mentioned earlier, some disabled bodies can now be seen as more capable than others and thus can be included in the neoliberal economy. Indeed, the state’s propaganda that celebrates the exceptionality of more ‘able-bodied’ disabled people, such as those capable of participating in the market forces and become productive in the neoliberal economy, further reinforces this ableist ideology. In contrast, medical and social assistance discourses are applied to those who are believed to be unable to care for themselves and are thus seen as dependent on the state. Women and girls with disabilities in rural and ethnic minority regions with limited educational and employment opportunities are more likely represented in this dependency category. In the context of Agent Orange, for instance, the state’s campaigns for supporting victims of Agent Orange have been coupled with its medical efforts to cure and rehabilitate disabled bodies. The sharp increase of rehabilitation centres in Vietnam in a post-war period funded by Western humanitarian and international development agencies reflects this cultural politics of disability in post-war Vietnam (see Nguyen, 2015). TDKRA is an interdisciplinary, decolonial, and participatory research project that was implemented in three communities in Vietnam: Binh Thuy and Ninh Kieu (Can Tho City), A Luoi (Thua Thien Hue Province), and Bac Tu Liem (Hanoi City). One of the key goals of TDKRA was to decolonise the traditional research relations by building relationships and engagement with girls and women with disabilities in these communities. To do so, the research team focuses on working with disabled women and girls in Vietnam to create decolonial spaces for thinking and acting with these women and girls. TDKRA

242

Xuan Thuy Nguyen

uses interdisciplinary, decolonising, and participatory arts-based research methods as decolonial praxis that informs our research with communities in the South. Many girls and young women in the TDKRA project are second or third generations of those exposed to Agent Orange. Over the four years of fieldwork with researchers and additional local gatherings, TDKRA has engaged 54 girls and 31 women with disabilities in 3 communities to build connections, mobilise networks, and create potential for change through building collective voices and activism from their vantage point(s). To tackle the silences from the Global South and engage girls and women with disabilities, TDKRA works with researchers in Canada and South Africa, as well as Disabled Persons’ Organisations (DPOs) in three communities in the Global South. The inclusion and centrality of DPOs are important to TDKRA efforts as they contribute to making project decisions, organising local fieldwork, and building leadership and activism in addressing disabling issues in their own communities. Disability as social embodiment

Narratives of disability and exclusion in the Global South are not universal. Rather, they are deeply entangled within disabled people’s lives and memories of their past, as well as within their ongoing struggles as they have continued to encounter exclusion and disablement in their everyday life. We found that while some disabled women and girls associated their disability with a wide range of factors such as illnesses, accidents, stigmas, lack of access to health care, and community networks, others told their struggles for livelihoods and everyday survival. In a community engagement event in 2019, I sat down with Ms. Xuan, a disabled, ageing woman in her late sixties who became involved with the TDKRA project through the active participation of her disabled granddaughter. Our conversation had emerged through our everyday encounters during my fieldwork in A Luoi. However, I never had an opportunity to listen to her life story. Rather than a typical interview with structured or semi-structured questions, our conversation emerged through her reflections of her own childhood within the historical context of Vietnam’s national struggles for independence since the 1940s. Grandma:

I went to the guerrilla militia and the army for 2 years then our nation was liberated. After that, I was at the Party Central Committee of Quang Tri Province. Then Quang Tri was merged as Binh-Tri-Thien (Quang Binh-Quang Tri-Thua Thien Hue). In 1976, I went to Hue and stayed here until I retired. My father was a soldier in 1947, in 1952 he died, my mother stayed at home and borne me. About 2 months later, she experienced a haemorrhage and passed away in 1953, I was raised by grandparents. It was a very difficult time in my life, like living between life and death. Our life was like ‘rice

A decolonial approach to disability as knowledge and praxis

Interviewer: Grandma:

243

on the floor’ now. During the war from 1968–1975, it looked like ‘rice on the floor’. Why was it like ‘rice on the floor’? The airplane always raided during war.

Like other disabled women and girls, Ms. Xuan located her disability within her personal memories – a site of struggle entangled with the historical and ongoing impacts of wars on her family’s many generations, causing painful experiences with debilitation and disablement. In her memory, the war had a special place in constructing her personal experiences as a disabled veteran, rather than a backdrop of her family’s struggles. The wars were framed as a historical condition for shaping her consciousness of struggles for life and death, as she witnessed many lives lost in the battlefields. The destruction of land and killing of the resurgent forces – guerrillas, were vividly captured in her memories: Grandma:

In 1968, Qu
ng Tr was in a horrible time. US troops landed in Qu
ng Tr with all kinds of bombs, including B52. There is an area, full of high water-fern that helicopters smashed to locate the Vi!t C"ng hiding underneath. Also, under the secret tunnels, there were 6–7 guerrillas in each tunnel, I did not know why or who pinpointed. There were 5 tunnels and they bombed 3 tunnels; all guerrillas passed away. Fortunately, there were 2 survived tunnels, from 43 guerrillas but then only 14–15 people survived. From 1967–1969, from 1970–1975, from 1970 and later, there were a lot of battles. In 1972, we returned to Qu
ng Tr to fight the battle of 85 days and nights, like ‘rice on the floor’.

Here, the narratives of killings were framed through the participant’s reflections on the national struggles in which she situated herself. She used the pronoun ‘we’ rather than ‘I’ in the conversation, highlighting the collective struggles in which she engaged as the subject. This reflects the political implications of decolonial framing in that the participant seemed to narrate her personal struggles as a site of reclaiming her existence and positionality. At the same time, her reflection on pain and intergenerational trauma caused by the wars was poignant. She talked about the birth of her son and his two children, all of whom became disabled in the aftermath of the Vietnam War. At the time of writing this chapter, her son had died due to his Agent Orange related illness, leaving behind the two disabled grandchildren. Consequently, there were desperate efforts of Agent Orange affected families in living an ordinary life through a narrative of family struggles: Grandma:

In 1979, her father [the father of Tranh – the disabled girl] was born. After that his younger sister was affected [by Agent

244

Xuan Thuy Nguyen Orange] too. She finished grade 7 but she couldn’t remember anything. She was studying just for fun; she went to class but couldn’t remember anything. When going to the hospital, she, her aunt and her father were also affected by Agent Orange. But only her father has been considered as a victim of Agent Orange. Her aunt was not [certified as ‘victims of Agent Orange’] due to her missing of a few percent from the threshold. They [her father and mother] still have marriage certificate when getting married because her father is mentally ill but her mother is a normal person. But when she [Tranh] was born, she could not walk until she was three-years old … just moved from house to house. Only when her [other] grandmother had a wheelchair, she learned to stand up and later she could walk. [At the time] she was born in 2005, she was normal and very healthy at first. But when she was about 4 years old, she was half-paralysed and her head always hurt, she always fell down, so she had to walk with our supports, if not, she would fall. Both her legs and hands had scars.

This narrative reflects the ways in which transnational imperialism has produced impairments in one distinctive community in Vietnam. The wars have inflicted violence on their bodies through physical and emotional pain, causing intergenerational traumas and struggles for her family. There were tensions between the struggles to reclaim her subjectivity and experiences as the disabled subject, and yet, this narrative has remained subscribed to the colonial narrative of normalcy, where the subject struggled to emerge in such decolonial spaces. We must make sense of such stories within the geopolitics of imperialism for taking control over non-Western territories. This colonial/ modernist project in establishing their geo-political powers has had destructive impacts on human and environmental conditions across Southern spaces. Connell (2011) calls this politics of impairment a form of social embodiment, the ways in which the relationships between the social dynamics and the body are shaped. In the post-conflict in Sierra Leone, Berghs (2011) illustrates how spaces such as rehabilitation camps can become sites of tensions that engender new forms of struggles for identify formation in the aftermath of the conflict. She writes, following de Boeck, that ‘in order to give expression to such forms of violence, people use a “discourse of the senses” pointing to anxieties and threats to embodiment and what it means to live as a human being’ (p. 1400). As revealed in Ms. Xuan’s story, the extent to which the herbicide has caused environmental injustice for a vast majority of local community was marked by signs of destructions: Grandma:

Now you can see plenty of trees but in past, they weren’t there. From the years of eighty, the new trees began to grow little by

A decolonial approach to disability as knowledge and praxis

245

little. Trees also affected by toxic, much less human. In general, this area and mountainous areas in Quang Tri were completely poisoned. And yet, as she argues, the injustices that they endured have yet to be addressed by the authorities: Grandma:

Every member in my family is a victim of war, I want the policymakers to increase the salary requirements to raise my grandchildren because they are affected by the Agent Orange. I think everyone wants that as well. It affects one, two, three generations, not just one.

This story reminds us of the long-standing impacts of the imperialist violence on the local community. Its politics of debilitation has sustained much longer after the war has ended. As such, this historical narrative sends a clear message to international and national policymakers about the environmental and human destructions caused by the imperialist wars, in so doing unsettling the discourse on ‘reconciliation’ set forth by the United States Institute of Peace and its efforts for reframing the narrative on Agent Orange. The politics of representations

Natalia Duong (2023) argues that many studies about Agent Orange have ‘reiterate[d] and reinforce[d] ableist beliefs about types of disability that can or should be visually represented’ (p. 149). Ableism is usually reflected in media representations, such as documentary films, that employ ableist language and images to establish truth claims about the chemical effects on human bodies. In such representations, then, disability is usually represented as ‘deformed’ bodies in need of medical interventions, thus reinforcing ableist assumptions about the disabled bodies through what the visuals represent. In the TDKRA study, we found that while participants felt marginalised and stigmatised, they also expressed a desire for change through an alternative politics of representation that came from their own perspectives. In fact, the use of participatory arts-based methods disrupts this ableist narrative by creating a more inclusive space for participants to express themselves through their visual productions. For example, during the workshops, the girls drew images of their homes, families, schools, public parks, and landscapes within their communities. Interestingly, instead of drawing themselves alone, they drew themselves with friends, teachers, and family members. The drawings in Figure 14.3 express a strong sense of community and desire for building social relationships among girls with disabilities in the project. This piece of art, produced by a girl with disabilities in a community highly affected by Agent Orange, reflects her efforts to reclaim her power and

246

Xuan Thuy Nguyen

Figure 14.3 Drawing ‘I am a leader because …’ created by Linh, aged 12, A Luoi district.

A decolonial approach to disability as knowledge and praxis

247

existence through her self-representation. In her art, Linh drew an image of a girl practising martial arts. Linh carefully sketched a birthmark on the girl’s face as a unique representation of her embodiment. This birthmark was remarkable, as it reflects how she identified herself as a disabled girl with strength and beauty. On the left-hand side of the picture is a karate match between a boy and a girl, assumed to be Linh. In her karate uniform, the girl demonstrates strength by moving her body, ready to get on the stage, while the boy looks not yet ready to engage in the match. Linh’s depiction of this gender relation is interesting and telling. This visual representation challenges essentialised assumptions about disabled girls embodying vulnerability. Instead, this representation conveys their desire to act firmly and confidently. On the right-hand side of the picture, the girl once again depicts herself as moving her body freely and relaxingly. The caption within the drawing reads ‘Live in your own way’, reflecting her desire to challenge gender and disability discrimination. The caption underneath reads: ‘I am a leader because I can teach and learn martial arts and teach martial arts to other friends’. This articulation reflects what Duong (2023) argues as ways of producing ‘a different sense of being in the world’ (p. 161) that seek to destabilise normative assumptions about disability, gender relations, and Agent Orange contamination through a different politics of representation curated by her own bodily movements, actions, and leadership responses to the able-bodied world. In Our Journey, a documentary film which we co-produced with the girls and women with disabilities under the technical assistance of a group of local filmmakers, we engaged participants in knowledge production, voicing their own concerns about their experiences with racism, ableism, and gender discrimination they faced in their everyday life. The film engages the girls and women to make visible their invisible representations – within their local communities. The film was an example of how disabled people and their communities can engage in decolonial research as a praxis for reclaiming their voices, representations, and participation. To make the film process participatory, we engaged participants in brainstorming sessions, in which they discussed, shared, and presented their ideas for the film. While the girls also recorded their own cellphilms, a short video clip created by cellphones, the local filmmakers assisted with the filming process. We asked the girls and women how they wanted to be represented and to explain why they chose certain images to be included in the film. The women expressed their interest in highlighting issues of domestic violence as well as opportunities for participation, and employment, whereas the girls expressed interest in participation through activities such as going to schools, playing, and supporting friends. They then shared their group projects to other groups and discussed and debated how and why these ideas are important. At the end of the filming process, the girls and women in each site of the project worked together to review a rough cut of the film with their peers and

248

Xuan Thuy Nguyen

Figure 14.4 Our Journey, a TDKRA documentary film, 2019.

provided suggestions for film editing, in so doing actively engaging in constructing and controlling their own narrative. Figure 14.4 is a screenshot of the documentary film Our Journey, originally produced in Vietnamese and translated into English with Vietnamese and American Sign Languages. While this participatory process enabled us to engage with marginalised communities in the Global South, we still encountered a variety of barriers to decolonial practices. For example, some ethnic girls with disabilities found it difficult to express their ideas in Kinh language – the language of the majority group in Vietnam. However, when using their own ethnic language, they became much more active in sharing their ideas with one another. Clearly, this reveals another dimension of coloniality in the post-colonial spaces where Indigenous and ethnic minority languages have continued to struggle for claiming their existence. A group of girls and young women drew images of the cultural activities in their communities to mark their participation because they were invisible from such spaces. Diverse modalities enhanced the participation of disabled women and girls. This required the research team to be attentive to diverse representations of disabled girls and women and how they wish to represent themselves in such spaces. Questions regarding whose stories are being told, by whom, and who controls the narratives are political to the research process. By using research as a praxis that constructs decolonial spaces for participation, we engaged disabled girls and women in action and invited them to think and act together. The aforementioned trailer highlighted the voices, music, embodiment, representation, and engagement of women and girls with disabilities in their own communities. These are girls and women who have been excluded from

A decolonial approach to disability as knowledge and praxis

249

participation because of institutionalised racism, classism, and ableism. The final footage of the trailer is powerful. It showed photos and movements of disabled girls and women who pinned their own images on a workshop board that previously only included images of able-bodied children. This footage speaks eloquently to the politics of disability representation by making visible the invisible representations of women and girls with disabilities. Conclusion Post-colonial theorist Edward Said reminds us of the ways in which critics are positioned in relation to the text and its historicity, inviting his readers to question the relationships among the text, its contextual circumstance, and its critic. This decolonial approach to disability studies is a way of responding to what Edward Said calls monocentrism (Said, 1983), the assumption that one’s idea is the only idea in the world. Indeed, much of what constitutes disability studies as a discursive field could be seen as monocentric as it articulates some specific realities of disablement and exclusion in the West, and yet, much less has been written to engage with what Said sees as monocentrism which situates the field of disability studies. In response to monocentric approaches in disability studies, the TDKRA project is a decolonial approach that resists the ways in which knowledge has been privileged by Western academic institutions by working with and from the perspectives of girls and women with disabilities in the Global South. In contrast to the monolithic assumption about girls and women with disabilities in the Global South as a homogenised social grouping, a decolonial disability studies approach retheorises disability from the periphery and through its engagement with Southern spaces, histories, and epistemologies. Furthermore, through a decolonial approach to disability and coloniality, I argued that critical disability studies that engage with decolonial theories and praxis can transform Western and Eurocentric disability studies by reframing the politics of the periphery where disability in the Global South can be re-imagined (Nguyen, 2015). In this politics of engagement, disability is invited to participate in the process of worldmaking to co-create an alternative to the colonial and ableist world. Thus, decoloniality can be seen as an alternative option to Eurocentric disability studies by its efforts to unsettle the coloniality/modernity structure of power and to create space for contextual, relational, and embodied forms of knowledge and social relations that have emerged from distinctive spaces, communities, and specific forms of social struggles in the global South. As I reflect on the visit to the community of Dong Son that was mentioned at the beginning of this presentation, I question why this socio-political space continues to be excluded from the struggles for justice that disability rights scholars and activists have sought to tackle across transnational borders. Despite the Vietnamese ratification of the UN Convention on the Rights of

250

Xuan Thuy Nguyen

Persons with Disabilities (UNCRPD), the auspices of the UNCRPD have failed to address the claim for justice of the Agent Orange survivors. A class action lawsuit was launched on behalf of the victims of Agent Orange in 2005 against the US-based chemical companies including Dow, Monsanto, and Hercules, for their production of defoliants that contained a high level of dioxin, causing health and environmental problems to Vietnamese peoples. In his ruling, Judge Jack B. Weinstein of the United States District Court stated that: No treaty or agreement, express or implied, of the United States … operated to make use of herbicides in Vietnam a violation of the laws of war or any other form of international law until at the earliest April of 1975 (The New York Times, 2005). The judge ruled in favour of US-based chemical companies and against the victims of Agent Orange because, according to the District Court, the production and use of defoliants such as dioxin did not constitute a crime (The New York Times, 2005). The environmental impacts of dioxin continue to cause unprecedented effects on the living conditions of local people and communities. Yet, the people involved in this class action lawsuit did not receive any justice for the mental, emotional, and environmental harms caused by the US government. Without a historical examination of the geo-political impacts of imperialism on the production of disability and impairment, diplomatic efforts by the US government in rekindling the discourse of Agent Orange can produce ‘crip nationalism’ (Puar, 2017), which fails to address imperialist violence and improve the quality of life for disabled people and others affected by this conflict. This decolonial politics, I hope, will open up more radical spaces for reflection, engagement, and social change across our communities in the Global North and South. Acknowledgements I would like to thank the Social Sciences and Humanities Research Council of Canada (SSHRC) for its financial support for this research. I thank Meysoon Amin, Carleton University, for her thoughtful comments and assistance towards the completion of this chapter. Notes 1 It should be noted that some of these participants were not identified by the authorities as directly exposed to Agent Orange due to the lack of documentation. 2 Coloniality is a term used by Anibal Quijiano to refer to the structure of power that came to be foundational to modernity and global capitalism: the codification of difference and the new structure of labour in control of Indigenous resources and products.

A decolonial approach to disability as knowledge and praxis

251

References Berghs, M. (2011) ‘Paying for stories of impairment – parasitic or ethical? Reflections undertaking anthropological research in post-conflict Sierra Leone’, Scandinavian Journal of Disability Research, 13(4), pp. 255–270. Connell, R. (2007) Southern theory: Social science and the global dynamics of knowledge. Cambridge: Polity. Connell, R. (2011) ‘Southern bodies and disability: Re-thinking concepts’, Third World Quarterly, 32(8), pp. 1369–1381. Dados, N., and Connell, R. (2012) ‘The Global South’, Contexts, 11(1), pp. 12–13. de Sousa Santos, B. (2018) The end of the cognitive empire. Durham and London: Duke University Press. Duong, N. (2023) ‘Rhizophora: Queering chemical kinship in the Agent Orange diaspora’, in Mel Y. Chen, A. Kafer, K. Eunjung and Julie Avril Minich (eds.) Crip genealogies. Durham and London: Duke University Press, pp. 137–164. Goodley, D., and Swartz, L. (2016) ‘The place of disability’, in S. Grech and K. Soldatic (eds.) Disability in the Global South: The critical handbook. New York: Springer, pp. 69–83. Grech, S. (2015) ‘Decolonising Eurocentric disability studies: Why colonialism matters in the disability and Global South debate’, Social Identities, 21(1), pp. 6–21. History.com (2019) ‘Agent Orange’. Available at: https://www.history.com/topics/ vietnam-war/agent-orange-1 Mignolo, W. D., and Walsh, C. E. (2018) On decoloniality: Concepts, analytics, praxis. Durham: Duke University Press. Nguyen, X. T. (2018). ‘Critical disability studies at the edge of global development: Why do we need to engage with southern theory?’ Canadian Journal of Disability Studies, 7(1), 1–25. Nguyen, X. T. (2015) The journey to inclusion. Rotterdam: Sense Publisher. Nguyen, X. T. (2023) ‘Decolonial disability studies’, in M. Mill and R. Sanchez (eds.) Crip authorship. New York: New York University Press. Padilla, A. (2021) Disability, intersectional agency, and Latinx identity: Theorising LatDisCrit Counterstories. London: Routledge. Puar, J. K. (2017) ‘Crip nationalism: From narrative prosthesis to disaster capitalism’, in The right to maim: Debility, capacity, disability. Durham: Duke University Press, pp. 63–93. Quijano, A. (2000) ‘The coloniality of power and eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Said, E. (1978) Orientalism. New York: Vintage. Said, E. W. (1983) The world, the text, and the critic. Cambridge, MA: Harvard University Press. Snyder, S. L., and Mitchell, D. T. (2010) Cultural locations of disability. Chicago: University of Chicago Press. Soldatic, K., and Grech, S. (2014) ‘Transnationalising disability studies: Rights, justice and impairment’, Disability Studies Quarterly, 34(2). https://ojs.library.osu. edu/index.php/dsq/article/view/4249/3588 Swartz, L. (2018) ‘Representing disability and development in the Global South’, Medical Humanities, 44(4), pp. 281–284. The New York Times (2005) ‘Agent Orange Case for Millions of Vietnamese Is Dismissed’, 10 March. Available at: https://www.nytimes.com/2005/03/10/ nyregion/agent-orange-case-for-millions-of-vietnamese-is-dismissed.html United States Institute of Peace (2021) ‘Vietnam War Legacies and Reconciliation Initiative’. Available at: https://www.usip.org/programs/vietnam-war-legacies-andreconciliation-initiative

15

Reflecting on the how questions Using intersectional methods for policy changes Deborah Stienstra

Introduction Over the past years, our community-engaged research teams have undertaken policy-related research in Canada that implements intersectional research methods. We do this because of our deep commitment to demonstrating and seeking to transform unequal power relations, including for and with people with disabilities. We also do this because, despite decades of research drawing upon lived experiences with disabilities and policy reports documenting these experiences, there are persistent policy and research gaps in whose lived experiences are recognised as valued and valuable. Many of the gaps reflect ableist approaches and the absence of valuing the experiences of those who are neurodivergent or living with intellectual disabilities. But many of the gaps also reflect other systems of power inequalities including colonisation and racism. We hear from Indigenous women with disabilities how gender-based violence can be disabling as well as the colonial structures like the Indian Act have created intersecting forms of discrimination that not only result in sex-based discrimination, but a set of barriers and lack of access to benefits unique to Indigenous women with disabilities (Gehl, 2021a, 2021b). We see a similar set of policy and research gaps around immigration laws that prevent people with disabilities from entering Canada, and therefore few immigrants with disabilities who can share their experiences. We know much about the experiences of exclusion among racialised people in Canada, but very little about how those intersect with experiences of disability. Intersectionality theory and practice are ways that help to address these gaps. Using intersectionality increases our capacity to respond to differences both within the diverse experiences of disability and across other dimensions of identity and power relations. Yet intersectionality is not a simple or easy tool to use. This chapter discusses some of the tensions that we have experienced in one project and how we addressed the challenges. On reflection from these experiences, the chapter argues that transformational policy change requires critical and intersectional policy analysis consistently used from the beginning of the idea through to the dissemination of results, DOI: 10.4324/9781003280422-16

Reflecting on the how questions

253

recognising and addressing the inherent power relations at work in both the research and the policies examined. Another key part of moving to transformative change is that researchers need to work together with civil society partners to undertake and share the research and policy alternatives in ways that enhance and showcase the intersectional analysis and practice. Intersectionality and critical policy analysis While the term intersectionality was coined by Crenshaw (1989, 1991; Cho et al., 2013), the concept of intersectionality has been at the heart of much of Black feminist thought for decades (Collins, 2017, 2019; Collins and Bilge, 2020; Hancock, 2016). Indigenous feminists note the similarities between long-standing Indigenous approaches and intersectionality (Clark, 2016). Intersectionality is both theory and practice, seeking to uncover and change unequal relations of power among individuals, in communities, and embedded in social institutions and structures. Intersectionality does not hide from an analysis of power and the need for change. Collins (2019) argues that intersectionality can explain and criticise existing inequalities and ‘aim to reform what is in the hope of transforming it into something else’ (p. 5). One of the areas where this transformative need and potential practice are apparent is in policy analysis. Critical policy analysis requires that we go beyond what some have called ‘problem-solving theory’ which takes a narrow, focused approach to an area, seeking to identify and address ‘particular sources of trouble’ (Cox, 1996). We engage in critical policy analysis by looking, in part, at the historical context of the issue or area and identifying who benefits and who loses over time, thus identifying some of the relations of power (Orsini and Smith, 2007; Stienstra, 2018). Intersectionality adds to and enhances critical policy analysis. As Hankivsky and Jordan-Zachery (2019b) suggest, it encourages us to explore how systems and structures of power are mutually interdependent and interlocking; how they change and/or evolve over time; and how they take on different shapes and meanings depending on geographic, political, or economic settings. Intersectionality involves analysis at multiple levels, linking individual experiences to broader societal structures and institutions. It recognises the importance of identifying our own location in these power relations, necessitating reflexivity by those undertaking the analysis. And it entails that those affected by problems and policy are meaningfully engaged with identifying the issues and developing responses and effective solutions. Intersectionality helps to make better policy based on more complete information, including the complexities of human differences. ‘Intersectionality draws attention to aspects of policy that are largely uninvestigated or ignored altogether: the complex ways in which multiple and interlocking inequities are organised and resisted in the process, content, and outcomes of policy’

254

Deborah Stienstra

(Hankivsky and Jordan-Zachery, 2019b, p. 2). Despite this intent, disability is often neglected in intersectional analysis and practice (Hirschmann, 2012; Thill, 2019). We see the requisite nods to disability or ability in many lists of potential identities to consider and to ableism in the list of power relations to consider. Yet there are very few intersectionality scholars who engage more substantively with disability. Part of the reason may come from the invisibility of people with disabilities in societies around the globe and the taken-for-granted ableist foundations of most societies. This along with the history of the development of intersectionality, and the gender-first approach to intersectional analysis taken by many policy makers, provide a partial understanding of this gap. But that is not sufficient to explain the absence of disability in intersectional analysis. The history and context of disability itself also add to our understanding. For example, we know that disability and race have been conflated by policy makers and service providers in some global Northern countries. We see the ways in which special education in the United States has perceived Blackness as a disability (Connor and Ferri, 2005; Harry and Klingner, 2014). We also know that many Indigenous languages and cultures have no concept of disability (Stienstra et al., 2018) and that colonialism has systematically disabled many Indigenous peoples (Jaffee and John, 2018) which has created a reluctance to embrace disability identities. Both create challenges for including and addressing disability in an intersectional analysis. Intersectionality-based policy analysis is increasingly used, although still primarily in the global North (Hankivsky and Jordan-Zachery, 2019a). It offers a means by which to make clearer the complexities that are often invisible in public policy and to address the inequalities at the heart of the invisibilities. This multi-pronged approach – manifesting and addressing complexity – shapes much of intersectional policy analysis. Intersectional policy analysis can be used for more transformative change when it identifies how policies themselves constitute, replicate, and maintain unequal power relations (Collins, 2017). This shifts policy from being seen as a neutral tool to understanding that policies are themselves part of existing power relations. Once that recognition of the lack of neutrality in policy occurs, it is possible to reframe and change policy and use it for transformative social change. Manuel (2006) offers one of the earliest analyses of the transformative potential of intersectionality-based policy analysis by linking it with living the good life. Intersectionality theory extends our understanding of how people pursue the ‘good life’ by addressing the question: how do gender, race, class, and other forms of identity and distinction, in different contexts, shape not only the way that we view policies meant to improve our lives and the choices we make in response to those policies but also our ability to envision the possibilities for living the good life? (p. 175).

Reflecting on the how questions

255

With their concept of policy justice, Wiebe and Levac (2020, p. 6) argue for a clear link between policy and intersectionality praxis. For us, policy justice includes a commitment to advancing public policy with intentionally anti-oppressive and social justice-oriented aims; in other words, public policy that acknowledges and aims to address the effects of racism, sexism, colonialism, ableism, heteronormativity, transphobia, and classism in all policy fields, in an attempt to seek equity. Both living the good life and policy justice recognise the importance of policy as a transformative tool to address inequalities. This end goal of transformative change has not, however, often been understood as including disability justice (Piepzna-Samarasinha, 2018; Sins Invalid, 2019). We have not understood how interconnected diverse struggles for justice are. For example, we may use intersectional policy analysis to understand how Black and Indigenous peoples are over-represented in carceral settings but not think about other disability-related settings of incarceration including psychiatric or other institutions nor the movements between these (BenMoshe and Carey, 2014). An intersectionality-based policy analysis needs to grapple with these complexities. It needs to understand how, as a tool developed and used primarily in the global North, it may be less relevant in the global South (Menon, 2015). These echo the sustained critiques of the global Northern focus of much of disability studies and disability policies (Grech, 2015; Nguyen, 2018; Nguyen et al., 2019). It needs to ask important ‘how’ questions including: how do we address disability justice in the context of intersectionality-based policy analysis? How do we think about policyrelated frameworks that are applicable in multiple geographic and political contexts? How do we move beyond generic policy responses that assume they will benefit everyone? How do we move from aspiration to implementation of transformative change? In the remainder of this chapter, I discuss one research project that used intersectional policy analysis to consider the impacts of COVID-19 policies in Canada. Using and adapting an existing intersectionality-based policy analysis framework (Hankivsky et al., 2014), our research team collected, analysed, and reported on the impacts of COVID-19 policies on diverse people with disabilities in Canada. I offer some reflections on how this research addresses the ‘how’ questions noted above. Our research highlighted not only the intersectional impacts of COVID and COVID policies, but significant gaps in capacity to engage in intersectionality-informed research in Canada. The transformational potential of this research is a work in progress and shaped by both our community-engaged practices and knowledge mobilisation strategies.

256

Deborah Stienstra

Using an intersectionality framework for COVID-19 policy research In the fall of 2020, the Canadian government department, Employment and Social Development Canada, hired the Live Work Well Research Centre to undertake a ‘Disability Inclusion Analysis of Lessons Learned and Best Practices of the Government of Canada’s Response to the COVID-19 Pandemic’. The research team had 15 researchers, including those from our civil society partner organisation DisAbled Women’s Network of Canada (DAWN Canada). The final report and six plain language fact sheets are available at: https://liveworkwell.ca/disability-inclusion-analysis-covid-19. The contract required that the team undertake a disability inclusion analysis. In our proposal, we argued that with the federal government’s commitment to Gender-Based Analysis+ (GBA+), its version of intersectionality-based policy analysis,1 our report should address both disability inclusion and GBA+. To do this and beginning from the questions outlined in Hankivsky et al. (2014), we created and used an intersectional disability and gender analysis framework outlined in Box 15.1. To develop the report, we drew on multiple data sources: quantitative and survey data; federal and provincial policies; academic and community literature; social media; interviews; and focus groups. Our team gathered twice for collaborative data analysis to identify key themes, findings, and gaps. We developed a snapshot of diverse people with disabilities in Canada before and during the pandemic and identified 19 themes illustrating impacts, related policies, and any good practices. The report was presented to the Minister’s Disability Advisory Committee in December 2020, formally submitted to the federal government in early 2021, and widely shared through Canadian media and webinars in 2021 and 2022 (for example, Brown, 2022; Francis, 2022; Wiens, 2022). In reflecting on this experience, I identify several tensions that arose in our intersectional policy research and practice. These tensions mirror some key concerns about intersectional methods and practices in the literature.

Box 15.1 Intersectional disability and gender analysis framework (iDGA) 1 What are the effects of COVID-19 policy measures and on whom? • Who benefits from COVID-19 measures and who does not? • Which people with disabilities benefit and are excluded because of how disability is defined? • Which people with disabilities benefit and are excluded because of eligibility criteria? • Which people with disabilities benefit and are excluded from which policies? • How do the above inclusions and exclusions link more generally to the diversity of people with disabilities (gender, Indigenous,

Reflecting on the how questions

•

• • • •

257

disability and impairment type, age, presence of children and other caring responsibilities, ethnicity/race, rural/urban, living arrangements, language, immigration status)? What are the particular ways that various Indigenous peoples with disabilities are included or excluded? What is the role of Indigenous governments in these processes? Are there any cumulative and/or cascading impacts of inclusion or exclusion? Who experiences these? Does the timing of policy measures have differential impacts? Do the jurisdiction and jurisdictional coordination have differential impacts? How does the jurisdictional nature of Canada challenge the navigation of benefits for diverse people with disabilities?

2 How have a) diverse people with disabilities, their knowledges and experiences, and b) their families, support/care providers, and disability organisations been included, and accessibility addressed, in • data gathering? • communications and information sharing before, during, and after an emergency? • developing policy and programme options? • emergency response plans? 3 Are there structural and/or systemic barriers to the inclusion of diverse people with disabilities in 2 above? For example, because they • • • • • • • • • •

Live in long-term care, prison or other institutions? Live in group homes? Live in a shelter? Experience homelessness? Attend school? Are a particular age? Experience a certain disability or impairment type? Have a certain family situation? Have a certain immigration status? Other?

4 What good practices exist, and what lessons have been learned, in the inclusion of people with disabilities and attention to accessibility in: a communications and information sharing before, during and after an emergency? b data gathering? c developing policy and programme options? d emergency response plans?

258

Deborah Stienstra

5 What could be done differently to address the experiences, knowledges, and needs of diverse people with disabilities, their families, support/ care providers, and disability organisations in emergency planning?

Disability and intersectionality Recent literature suggests intersectional practice can be truncated, resulting in an approach that fails to reflect multiple systems of power which are interdependent and interlocking (Hankivsky and Jordan-Zachery, 2019b). As discussed earlier, disability is not often included in intersectional analysis except in the list of possible identities to consider. This raises a tension. How can we be intentional in identifying disability inequalities in an intersectional policy analysis while still reflecting multiple, interlocking systems of power? One of the overall findings of our report was that diverse people with disabilities have been invisible in and excluded from COVID-19 policies in Canada. This invisibility and the disproportionately negative impacts on people with disabilities have been identified in many countries (IDA, 2021; United Nations, 2020). Yet the impacts have not been experienced equally amongst different groups of disabled people. By recognising these disparities, and examining who experiences what, we believed we shifted from a disability-focused analysis to a more intersectional one. Yet this type of intersectionality, what Christoffersen (2021, p. 15) calls ‘diversity within intersectionality’, can maintain the status quo rather than support transformative change. Christoffersen argues that considering the diversity within a particular group, such as people with disabilities, can predetermine which social group is affected by which social problem rather than leaving the door open to understand who is affected by what situation. Our research began by identifying what we meant by diverse people with disabilities: We intend all our research and analysis to be as intersectional as possible given the data available. We use the phrase “diverse people with disabilities” to indicate that commitment to intersectionality. This includes examining experiences based on: age caregiving and support relationships children, presence of disability and impairment type employment ethnicity/race family status gender immigration status

Reflecting on the how questions

259

income Indigenousness language LGBTQ22 living or housing arrangements rural, urban, remote location (Stienstra et al., 2021, p. 12) In gathering data and analysing what we found, we illustrated a commitment to understanding the complexity of experiences of people with disabilities. We went beyond traditional disability data sources to do this. For example, since the disability data related to COVID experiences did not address LGBTQ2 folks, we drew on a survey from Egale Canada to supplement our findings. In doing this, we found there was more in that survey related to disability than we expected. Egale’s survey found that members of the LGBTQ2 community were more likely to have a physical or mental health condition that increased their vulnerability to respiratory diseases than non-LGBTQ2 respondents. ‘Moreover, this effect was exaggerated for people who identified as LGBTQ2 and Black, Indigenous and People of Colour (BIPOC), with 40% reporting a condition that made them more vulnerable to COVID-19, 36% reporting a physical disability, and 35% reporting a mental disability’ (Stienstra et al., 2021, p. 26). From our recruitment of participants, through the collaborative data analysis sessions, and while writing the final report, we held ourselves and each other accountable to illustrating the complexity of experiences. Multiple authors went through each section to make sure that we had demonstrated the apparent identities and those less evident. For each of the 19 thematic areas, we included quotations from participants in interviews and focus groups asking: how do people with disabilities describe these impacts? Before each set of quotations, we summarised the demographic information provided by the participants whose quotes we used. This created a composite, and anonymous, description of the relevant participants. For example, in the section on income, we noted: The quotations below were gathered from the following individuals: a non-binary, non-racialised Ontario person with a learning disability; a racialised, urban Ontario woman who is Deaf; an urban Alberta woman, non-racialised, who is a wheelchair user; a trans/non-binary person in Ontario who has mental and episodic/chronic disabilities and is a caregiver for a person with a disability; an urban Québec man who is blind; an urban Ontario woman, non-racialised, who is visually impaired; an urban Québec woman who is hearing impaired; and an executive director of an Indigenous disabled persons’ organisation (Stienstra et al., 2021, p. 44).

260

Deborah Stienstra

Finally, in developing our report and sharing our findings with policy makers and the media, we made sure to articulate and demonstrate the impacts on diverse people with disabilities. For each thematic area and drawing on all our research, we identified key impacts related to theme and which people with disabilities were most affected. In the theme on disabilityrelated costs, for example, we noted: Many people with disabilities faced increased costs of day-to-day necessities, especially groceries and personal protective equipment (PPE), during the pandemic. Those most affected by increased costs are: people with disabilities living with children; Indigenous people with disabilities; and people who are immunocompromised or have severe respiratory conditions (Stienstra et al., 2021, p. 48) It was especially challenging to ensure that we kept this degree of complexity when talking to the media and policy makers. When we presented the report to the Minister’s Disability Advisory Committee, one member asked what findings we included about the impacts of COVID policies on racialised people with disabilities. Another asked how jurisdictional challenges in implementing COVID precautions faced by Indigenous people in First Nations communities were addressed in the report. Others raised questions about the impacts of COVID policies on children with disabilities and their families. All were important questions addressed in the report. Yet with very limited time to answer the questions, we provided answers that may not reflect that complexity. This was also true of media interviews. In 5- or 10-minute interviews, it was challenging to summarise the report and provide answers which reflected the diversity of experiences. Often the line of questioning was focused on generic people with disabilities, and our responses addressed more diversity of experiences. Our research suggests several strategies to answer the question of how we address disability justice in the context of intersectionality-based policy analysis. First, we recognise the importance of cross-movement intersectional research. It is important not only to ensure that disability research and data are intersectional (more on that below), but that disability data is also collected in and by other social justice movements. Egale’s survey is a good example, although it does have some limitations. The way in which disability is described in that survey, that is, as having a physical or mental health condition, does not reflect the complexity of experiences with disability that we see in disability data. But that it was included is important and helps to build more intersectional data. A second strategy that helped our research to be more intersectional was to work with a civil society partner, Disabled Women’s Network of Canada

Reflecting on the how questions

261

(DAWN Canada), to develop and implement our research and to share the results. This community-engaged scholarship approach ensured that the research was aligned with the partner’s priorities and approaches to research. In data collection, we drew on their networks for recruitment for interviews and focus groups, their existing demographic questionnaire for participants, and their previous research and social media as part of our literature search. They were involved in interviews and analysing the data. They were also a member of the Minister’s Disability Advisory Group and active in promoting the report. We jointly shared the results of the research including a March 2021 United Nations Commission on the Status of Women side event. Despite these strategies, we faced persistent gaps in available data, a second area of tension. How can we undertake an intersectional policy analysis when we do not have adequate data? Data and intersectionality Our research team faced several aspects of inadequate data, all of which hampered our intersectional analysis. Statistical and survey data addressed some but not all the intersections of identities we included, and the quality of the COVID-related data collected was not consistent. The COVID pandemic constrained the recruitment of people for qualitative research, including those who faced disproportionately negative impacts from COVID and COVID policies and policy makers involved in making decisions about COVID. Policies themselves were continually changing and not all were formal or in the public realm. Bowleg (2008) questions how we ‘ask questions about experiences that are intersecting, interdependent, and mutually constitutive, without resorting, even inadvertently, to an additive approach’ (p. 314). This is an important question for both qualitative and quantitative data collection. Dubrow and Ilinca (2019) note additional issues for gathering intersectional quantitative data including definitions, measurement, and scope. They argue demography is often confused with identity. Demographics refers to measurable characteristics that can locate a person within a social structure while identity is the perception of oneself or characteristics that others project on to a person. Power relations, a critical part of an intersectional analysis, are also difficult to measure or even to know where and how to identify them. Finally, Dubrow and Ilinca suggest that the ‘small-n’ problem, or too little data to allow the desired analysis, is an important limitation in intersectional analysis. As part of our data collection, we reviewed both government and nongovernment organisations surveys on the situations of people with disabilities in the COVID pandemic. Statistics Canada, the national statistics agency, introduced a series of crowdsourced surveys in June and July 2020, which have provided valuable information concerning the impacts of COVID-19 on different groups of people in Canada. However, information

262

Deborah Stienstra

from these crowdsourced surveys cannot be generalised since respondents do not necessarily represent the general population. The other surveys we found were generally done only once and provided limited data about the situations of distinct groups of people with disabilities during COVID. We also found some data did not exist. We were unable to examine intersections of more than two identities, for example, Indigenous people who have disabilities and identify as LGBTQ2. This illustrates the ‘small-n’ problem noted in the literature. While this gap was evident in the COVID data, it is a recurring issue in Canadian statistical data. DAWN Canada has raised the implications of this gap for intersectional data analysis regularly with Statistics Canada. In 2021, Statistics Canada introduced a gender, diversity, and inclusion data hub which they assert will enable more intersectional data analysis (Statistics Canada, 2021). It will take some time before we know if the promise of this work becomes reality. Data about the experiences of some groups was not available at all. These intersections include the following: migrant status, disability, and COVID disaggregated data on different Indigenous groups (for example, Indigenous people living in large urban centres, Indigenous people living on reserves) people with disabilities living in congregate settings especially those living in group homes or psychiatric settings and incarcerated people housing status, disability, and COVID. These data collection gaps reflect systemic inequities. For example, the gaps related to Indigenous peoples illustrate on-going and well-documented lack of trust among Indigenous people as a result of historic misuse of Indigenous peoples and their knowledge by colonial governments and non-Indigenous researchers. The lack of data from those living in congregate living settings demonstrates a different set of inequalities based in ableism, ageism, and carceral dynamics (Ben-Moshe and Carey, 2014; Fritsch et al., 2022). What did we do when the data was not there? From what we know, these groups are often at risk of significant impacts from COVID and have limited access to information and programmes related to COVID. For example, the challenges of migrant workers during COVID-19 have been well documented in a recent report, including loss of employment, human rights violations, and difficulty accessing health care (Caregivers Action Centre et al., 2020), yet there is no data linking migration status and disability. To address this and other gaps, we discussed the situations for these groups largely based on media or social media stories, or we inferred their situations based on pre-COVID data. For example, both COVID mortality data and excess death3 statistics do not disaggregate by disability yet are useful in inferring the deaths of people with disabilities during the pandemic. Using what we know about the ages of people with disabilities in Canada as well as

Reflecting on the how questions

263

the proportion of people with disabilities in long-term care homes, we argued that the concentration of COVID-19 mortality in long-term care facilities disproportionately affected people with disabilities (Stienstra et al., 2021, pp. 33–34). Qualitative data was also much more challenging to gather during a pandemic. The funder required the project to be completed in three months which added complexity. For the qualitative data, we received an expedited review and approval from the University of Guelph Research Ethics Board on 9 October 2020. Our initial draft report was due on 16 November 2020. Even in non-COVID times, recruiting and implementing key informant interviews, participant focus groups, and interviews in that time framework would be demanding. With the need to do all of this by phone or online, with key informants and participants dealing with the pandemic in their own lives and work, we found data collection immensely challenging. We had limited success in getting key informant interviews with policy makers, especially those in public health, as they were in the middle of dealing with a pandemic. We also had challenges in attracting participants in some regions of the country in part because we had fewer personal networks within which to share recruitment information and some people with disabilities had limited access to the internet or phones. We asked people who expressed interest in participating in the research to complete a questionnaire asking them to note various aspects of how they identify themselves (gender, type of impairment/ disability, Indigenousness, racialisation, living arrangements, urban/rural location etc.). We used their answers to help us involve a diversity of people with disabilities in the research (Stienstra et al., 2021, p. 139). To address the gaps in diversity, we scanned social media and reviewed the websites of many national and regional disability organisations to see what was already available from them. Policy data collection was also complicated by the (relative) speed of public policy action, the more informal nature of some policies, and the unexpected and unconsidered by-products of COVID policies. Political leaders made daily announcements of measures to address COVID, especially in fall 2020. Not all of these were in one centralised place within a government’s website which meant we asked our colleagues in the government to review and add to what we collected, and we compared what we found with media stories. In the rush to respond to the pandemic, some governments left decisions about who would receive what benefits in the hands of officials, rather than having clearly stated eligibility requirements. This meant that there were different experiences of accessing benefits even within the same programme and among the same groups of people. Policies often had unintended implications. For example, governments made choices about which services to deem essential and keep open. These decisions had significant consequences for people with disabilities. For example, in the province of Ontario when the Assistive Devices Programme was not deemed essential, wheelchair users could not get their wheelchairs repaired. This left

264

Deborah Stienstra

them at home, isolated, and reliant on the support of others to meet their needs. Lockdown policies meant loss of designated care providers from outside for those living in congregate living settings and loss of services and supports for those living in communities. Given the challenges in collecting intersectional data, how did we use intersectionality in our analysis of what data we did collect? As discussed above, our collaborative data analysis sessions together with individual and collective reflexivity and accountability shaped our data analysis. Again, and again, we came back to the questions in Box 15.1, reflecting on and comparing our answers. We wrestled with identifying who was most affected by particular policies when we had existing data or had to infer from existing literature and what we knew about historical contexts when we did not. As Bowleg (2008, p. 318) argues ‘Intersectionality research demands that researchers who employ an intersectionality perspective broaden their analytical scope beyond the collected data to become intimately acquainted, if they are not already, with the sociohistorical realities of historically oppressed groups’. We included composite identity information in sections where we provided quotes from the participants. We reflected together on actions and inactions that reinforced or exacerbated systemic inequities for specific groups of people with disabilities. These included, for example, care provision and women with disabilities, especially those who are racialised; loss of income, especially for Indigenous peoples, racialised people, and people with children; and violence, especially against women with disabilities and those living in congregate settings. Finally, and perhaps most challenging, was our attempt to identify cascading and cumulative experiences of exclusion. ‘For some people with disabilities, experiences of exclusion and discrimination build on each other, so they are cumulative. In other situations, one experience of exclusion or discrimination may act as a domino, cascading towards greater exclusion’ (Stienstra et al., 2021, p. 109). We see an intersectional framework as especially useful in helping us examine these cascading and cumulative impacts as it reminds us to look for multiple intersecting or interlocking sets of power relations at work in relation to policies. Some members of the team (Grand’Maison et al., 2023) have used this approach to explore the interconnections between housing, poverty, and care among people with disabilities in Canada during the pandemic. Our report illustrates how the discussions and legislative decisions made about medical assistance in dying (MAiD) during the pandemic acted as both cascading and cumulative, leading more people with disabilities to consider and initiate MAiD. As the pandemic continues, it is increasingly clear that more people with disabilities experience lack of supports and access which leads them towards MAiD (Francis, 2022; Peters, 2020). By demonstrating the disproportionate impacts on diverse people with disabilities, this report offers some strategies to answer the question of how we move beyond generic policy responses that assume they will benefit everyone.

Reflecting on the how questions

265

It also suggests some perspectives on challenges in considering policy frameworks that are applicable in multiple geographic and political contexts. It considers the ways in which multiple levels of government and resulting policies can reinforce systemic inequities through a lack of coordination and a practice of saying it is the responsibility of another jurisdiction. One final question is how do we move from aspiration to implementation of transformative change? Implicit is the additional question: how do we move from supporting the status quo to transformative policy justice? Moving to transformative policy change: Concluding discussion Our COVID-related policy research demonstrates an attention to a diversity of experiences of people with disabilities in Canada during the COVID pandemic as well as a critical evaluation of how policy action and inaction sustained inequities. We illustrated how COVID policies worked in mutually interlocking ways to create and sustain these different experiences. We also identified alternative directions that were needed to address these inequities and create disability inclusion policy responses. Critical and intersectional policy analysis scholars suggest that to move from supporting the status quo to developing transformative alternatives takes care and attention to systemic inequities. Specifically, they argue that transformative policy change comes from critiquing existing policy inequities, implementing equity-seeking policy practices, and being able to imagine alternatives for living a good life (Collins, 2019; Manuel, 2006; Wiebe and Levac, 2020). It also requires intersectional policy analysis that includes both reflectivity by the researchers and space and time to imagine alternatives. Intersectional policy analysis can support some parts of moving to transformative change. It can help to identify how policies constitute, replicate, and maintain systemic equities. It can provide examples of what equity-seeking policy practices might be. When it is grounded in research with people with lived experiences, it can also identify what might be alternatives for living a good life. But to press for change, intersectional policy research also needs to work in partnership with civil society organisations that can use the research in their advocacy for policy change. This community-engaged strategy using intersectional policy analysis can help to move towards transformational policy change. Notes 1 GBA+ has been criticised for its gender-first approach, flattening power relations, and significant confusion in how it can be implemented ( Hankivsky and Mussell, 2018). 2 LGBTQ2 refers to lesbian, gay, bisexual, trans, queer, two-spirit, and other gender-diverse people. 3 Excess death refers to the number of people who have died during a set timeframe beyond the expected mortality rate.

266

Deborah Stienstra

References Ben-Moshe, L., and Carey, A. C. (2014) Disability incarcerated: Imprisonment and disability in the United States and Canada. Palgrave Macmillan. Bowleg, L. (2008) ‘When Black + lesbian + woman ≠ Black lesbian woman: The methodological challenges of qualitative and quantitative intersectionality research’, Sex Roles, 59(5–6), pp. 312–325. Available at: 10.1007/s11199-008-9400-z. Brown, D. (2022) ‘Now with Dave Brown: Highlight Dr. Deborah Stienstra’, Accessible Media Inc. 27 January. Available at: https://www.ami.ca/category/ now-dave-brown/media/now-dave-brown-highlight-dr-deborah-stienstra Caregivers Action Centre (2020) ‘Behind closed doors: Exposing migrant care workers exploitation during COVID-19’. Available at: https://migrantrights.ca/ behindcloseddoors/ Cho, S., Crenshaw, K. W., and McCall, L. (2013) ‘Toward a field of intersectionality studies: Theory, applications, and praxis’, Signs, 38(4), pp. 785–810. Available at: 10.1086/669608. Christoffersen, A. (2021) ‘The politics of intersectional practice: Competing concepts of intersectionality’, Policy & Politics. Available at: 10.1332/030557321×161 94316141034. Clark, N. (2016) ‘Red intersectionality and violence-informed witnessing praxis with Indigenous girls’, Girlhood Studies, 9(2), pp. 46–64. Available at: 10.3167/ghs.201 6.090205. Collins, P. H. (2017) ‘The difference that power makes: Intersectionality and participatory democracy’, Investigaciones Feministas, 8(1), pp. 19–39. Available at: 10.5209/INFE.54888. Collins, P. H. (2019) Intersectionality as critical social theory. Duke University Press. Collins, P. H., and Bilge, S. (2020) Intersectionality. 2nd edn. Polity Press. Connor, D. J., and Ferri, B. A. (2005) ‘Integration and inclusion — A troubling nexus: Race, disability, and special education’, The Journal of African American History, 90(1–2), pp. 107–127. Available at: 10.1086/JAAHv90n1-2p107. Cox, R. W., and Sinclair, T. J. (1996) Approaches to world order. Cambridge University Press. 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, 1989, pp. 139–168. Crenshaw, K. (1991) ‘Mapping the margins: Intersectionality, identity politics, and violence against women of color’, Stanford Law Review, 43(6), pp. 1241–1299. Dubrow, J. K., and Ilinca, C. (2019) ‘Quantitative approaches to intersectionality: New methodological directions and implications for policy analysis’, in O. Hankivsky and J. S. Jordan-Zachery (eds.) Palgrave handbook of intersectionality in public policy. Springer International Publishing AG, pp. 195–214. Francis, A. (2022) ‘Canadian with disabilities fell through the cracks in the pandemic response. Here’s what needs to change as Omicron surges’, Toronto Star. 10 January. Fritsch, K., Monaghan, J., and van der Meulen, E. (eds.) (2022) Disability injustice: Confronting criminalization in Canada. University of British Columbia Press. Gehl, L. (2021a) ‘The Gehl report: Indigenous women and girls with disabilities and gender-based violence’. Lynn Gehl, May. Available at: https://www.lynngehl.com/ indigenous-women-and-girls-with-disabilities-are-bigger-targets-of-sexual-violence.html. Gehl, L. (2021b) Gehl v. Canada: Challenging sex discrimination in the Indian Act. University of Regina Press. Grand’Maison, V. et al. (2023) ‘Cumulative and cascading impacts of invisibility: An intersectional approach to understanding the housing experiences of Canadians with disabilities during COVID-19’, Research in Social Sciences and Disability: Disability in the Time of Pandemic, 13, pp. 31–48.

Reflecting on the how questions

267

Grech, S. (2015) ‘Decolonising Eurocentric disability studies: Why colonialism matters in the disability and Global South debate’, Social Identities, pp. 1–16. Available at: 10.1080/13504630.2014.995347. Hancock, A.-M. (2016) Intersectionality: An intellectual history. Oxford University Press. Hankivsky, O. et al. (2014) ‘An intersectionality-based policy analysis framework: Critical reflections on a methodology for advancing equity’, International Journal for Equity in Health, 13(1), p. 119. Hankivsky, O., and Jordan-Zachery, J. S. (2019a) The Palgrave handbook of intersectionality in public policy. Springer International Publishing AG. Hankivsky, O., and Jordan-Zachery, J. S. (2019b) ‘Introduction: Bringing intersectionality to public policy’, in O. Hankivsky and J. S. Jordan-Zachery (eds.) The Palgrave handbook of intersectionality in public policy. Springer International Publishing AG, pp. 1–28. Hankivsky, O., and Mussell, L. (2018) ‘Gender-based analysis plus in Canada: Problems and possibilities of integrating intersectionality’, Canadian Public Policy, 44(4), pp. 303–316. Available at: 10.3138/cpp.2017-058. Harry, B., and Klingner, J. K. (2014) Why are so many minority students in special education? Understanding race and disability in schools. 2nd edn. Teachers College Press. Hirschmann, N. J. (2012) ‘Disability as a new frontier for feminist intersectionality research’, Politics & Gender, 8(3), pp. 396–405. Available at: 10.1017/S1743923 X12000384. International Disability Alliance (IDA) (2021) ‘Survey on the experience of persons with disabilities adapting to the COVID-19 global pandemic’. Available at: https:// www.internationaldisabilityalliance.org/content/ida-survey-experiences-personsdisabilities-adapting-covid-19-global-pandemic Jaffee, L., and John, K. (2018) ‘Disabling bodies of/and land: Reframing disability justice in conversation with Indigenous theory and activism’, Disability and the Global South, 5(2), pp. 1407–1429. Manuel, T. (2006) ‘Envisioning the possibilities for a good life: Exploring the public policy implications of intersectionality theory’, Journal of Women, Politics & Policy, 28(3–4), pp. 173–203. Available at: 10.1300/J501v28n03_08. Menon, N. (2015) ‘Is feminism about ‘women’? A critical view on intersectionality from India’, Economic and Political Weekly, 50(17), pp. 37–44. Nguyen, X. T. (2018) ‘Critical disability studies at the edge of global development: Why do we need to engage with Southern theory?’, Canadian Journal of Disability Studies, 7(1), p. 25. Nguyen, X. T. et al. (2019) ‘Unsettling research versus activism: How might critical disability studies disrupt traditional research boundaries’, Disability & Society, pp. 1–20. Available at: 10.1080/09687599.2019.1613961. Orsini, M., and Smith, M. (eds.) (2007) Critical policy studies. University of British Columbia Press. Peters, G. (2020) ‘Dying for the right to live’, Macleans, 12 November. Available at: https://www.macleans.ca/opinion/dying-for-the-right-to-live/ Piepzna-Samarasinha, L. L. (2018) Care work: Dreaming disability justice. Arsenal Pulp Press. Sins Invalid (2019) Skin, tooth and bones: The basis of movement is our people. A disability justice primer. 2nd edn. Sins Invalid. Available at: sinsinvalid.org. Statistics Canada (2021) Gender, diversity and inclusion statistics hub, The Daily. 8 December. Available at: https://www150.statcan.gc.ca/n1/daily-quotidien/211208/ dq211208d-eng.htm

268

Deborah Stienstra

Stienstra, D. (2018) ‘Canadian disability policies in a world of inequalities’, Societies, 8(2), p. 36. Available at: 10.3390/soc8020036. Stienstra, D., Baikie, G., and Manning, S. M. (2018) ‘‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating intersections of Indigenousness, disability and gender in Labrador’, Disability and the Global South, 5(2), pp. 1385–1406. Stienstra, D. et al. (2021) Disability inclusion analysis of lessons learned and best practices of the government of Canada’s response to the COVID-19 pandemic. Prepared for Employment and Social Development Canada. Live Work Well Research Centre. Available at: https://liveworkwell.ca/disability-inclusion-analysiscovid-19 Thill, C. (2019) ‘Listening for intersectionality: How disabled persons’ organisations have improved recognition of difference in Australia’s National Disability Insurance scheme’, in O. Hankivsky and J. S. Jordan-Zachery (eds.) Palgrave handbook of intersectionality in public policy. Springer International Publishing AG, pp. 689–704. United Nations (2020) ‘Policy brief: A disability-inclusive response to COVID-19. Available at: https://www.un.org/sites/un2.un.org/files/sg_policy_brief_on_persons_ with_disabilities_final.pdf Wiebe, S. M., and Levac, L. (2020) ‘Introduction: Why create spaces of engagement? Connecting theory, policy, and practice’, in L. Levac and S. M. Wiebe (eds.) Creating spaces of engagement: Policy justice and the practical craft of deliberative democracy. University of Toronto Press, pp. 3–21. Wiens, C. (2022) ‘‘It makes my life very challenging’ People with disabilities face more barriers during pandemic’, CTV Kitchener. 13 January. Available at: https:// kitchener.ctvnews.ca/it-makes-my-life-very-challenging-people-with-disabilitiesface-more-barriers-during-pandemic-1.5739327

16

Cultural humility in participatory research Debunking the myth of ‘hard to reach’ groups Robel Afeworki Abay and Hella von Unger

Introduction Marginalised communities’ participation in research has been a somewhat neglected topic in Germany. In recent years, however, participatory research with people from marginalised communities, such as migrants, refugees or disabled people, has received renewed academic attention (Aden et al., 2019; Afeworki Abay and Engin, 2019; Korntheuer, Afeworki Abay and Westphal, 2021; Otten and Afeworki Abay, 2022; von Unger, 2018; Wöhrer et al., 2020). On the one hand, participatory research is viewed as a means of engaging with the so-called ‘hard to reach’ groups or communities. On the other hand, problems persist. In this chapter, we put forward the idea that categorising certain groups as ‘hard to reach’ is deeply problematic without taking into account: a) the positionality embedded in that description, and b) the structural barriers to research participation affecting some groups and communities. Critical self-reflexivity enables researchers to identify and address both overt and subtle ways in which they, as academics, are entangled in the reproduction of inequality and to seek out means of analysing, deconstructing and overcoming processes of othering – thus debunking the myth of ‘hard to reach’. Participatory research offers an innovative approach to knowledge production: academic and community partners work together to investigate, understand and change social realities by actively engaging people from marginalised groups in the research process and gearing the research process towards their standpoints and needs (von Unger, 2014). Participatory research opens up opportunities to address questions of social justice in the communities involved and to critically reflect on social power relations with the aim of developing solutions based on bottom-up, democratic research practices (Korntheuer, Afeworki Abay and Westphal, 2021). Moreover, active and equal participation by research partners from many marginalised communities has been shown to significantly affect the uptake of new approaches to decolonising knowledge production: until now, knowledge has often been produced about these communities, not with them (Afeworki Abay, Schülle and Wechuli, 2021). DOI: 10.4324/9781003280422-17

270

Robel Afeworki Abay and Hella von Unger

Postcolonial processes of othering are embedded in epistemic violence arising from the Western/imperial production of knowledge on those constructed as the ‘other’. The harmful constructions of the ‘other’ can be traced back to the colonial dialectics of ‘us’ and ‘them’ (Anderson, 2013). As several scholars have emphasised recently, even after the end of the actual colonial occupation, the dominant human hierarchies between coloniser and colonised are ‘still with us’ (Quijano, 2000, p. 218) today, albeit in more subtle forms. The hegemonic structures of Eurocentric discourses, methodologies, imaginaries, materialities and praxis are deeply rooted in the epistemic violence of colonialism that claims Western knowledges to be universal and thus sustains an ‘academic neo-imperialism’ (Alatas, 2003, p. 601). Similarly, Helen Meekosha (2011, p. 668) argues that many contemporary academic disciplines in the global North, such as disability studies, ‘constitute a form of scholarly colonialism’. She further explains that ‘colonialism was not only an economic process, but also one of imposing Eurocentric knowledge on the colonised’ (p. 677). Spivak (1988) reminds us how Western ontologies and epistemologies are often entangled in epistemic violence: ‘the remotely orchestrated, far-flung, and heterogeneous project to constitute the colonial subject as Other’ (p. 280). Critical analysis of the notion of epistemic violence is therefore essential to acknowledge subaltern knowledges as well as to transform the colonial dynamics of knowledge and power (Quijano, 2000, 2007) and the production of knowledge via the realm of research. In recent years, the term ‘coloniality of power’, coined by the Peruvian sociologist Anibal Quijano, has become an increasingly relevant critical framework to analyse the complex, interlinked dynamics of power and knowledge in postcolonial times. Decolonial approaches, a means of ‘epistemic reconstruction’ (Quijano, 2007, p. 176), challenge the hegemonic notion of academic knowledge ‘in view of its rigor and instrumental potential, [as] radically different from other ways of knowing, be they lay, popular, practical, commonsensical, intuitive, or religious’ (de Sousa Santos, 2018, p. 5). Practices of decolonisation straddle these complexities to ‘undo’ the ‘doing’ of colonial hierarchies, structures and relations that are grounded in various forms of epistemic violence. As de Sousa Santos (2018, p. 14) explains, ‘since colonialism is a cocreation, decolonising entails decolonising the knowledge of the colonised as much as the knowledge of the coloniser’. This includes challenging the hegemony of Western knowledge, overcoming the various forms of epistemic violence and centring local and contextual knowledges within the broader project of decoloniality. In this regard, ‘epistemic de-linking’ (Mignolo, 2007, p. 450) is relevant to develop bottomup research methods focussing on local and community knowledges. The central question is, therefore, as Mignolo (2009, p. 2) put it: ‘Who and when, why and where is knowledge generated?’ This is also a crucial aspect when furthering discussions on the possibilities of decolonising academia (Rodríguez, 2018) including its concepts, theories, models, methods and

Cultural humility in participatory research

271

methodologies (Alatas, 2003; Smith, 1999, 2005) and is therefore relevant to put community knowledge at the centre of research processes. Decolonial perspectives foster the coproduction of local and contextual knowledges within participatory research frameworks as a form of ‘epistemic disobedience’ (Mignolo, 2009, p. 8). It can be argued that cultural humility in participatory research is a very useful instrument to develop ‘nonextractivist methodologies’ (de Sousa Santos, 2018, p. 14) as part of the ethical responsibilities. As a core element of participatory knowledge production, engaging with self-reflexivity throughout the research process is crucial: researchers must critically examine their own positionality and power relations (Muhammad et al., 2018; Otten and Afeworki Abay, 2022; von Unger, 2018). In this sense, within its bottom-up approach, participatory research seeks to overcome top-down policies and programmes by reflecting on various ethical concerns related to power relations between academic researchers, community established partners and research partners throughout the research process from the research design, data collection and data analysis to the publication of the results as well as ensuring that the research outcomes are sensitive to local contexts (Korntheuer, Afeworki Abay and Westphal, 2021; von Unger, 2014). For researchers, understanding and accurately representing intersecting positionalities in relation to community partners and stakeholders is essential to ensure that they are authentically engaged in power sharing, committing to co-learning and self-reflection. However, in the practical implementation of participatory research, multiple challenges and limitations arise in terms of power relations, methodology and research ethics. Therefore, it is indispensable to critically analyse interlinked forms and lived experiences of discrimination, empowerment and lack of empowerment from the subjective perspectives of those involved and to properly tackle the practical, methodological and ethical challenges associated with participatory research in forced migration and disability studies (Korntheuer, Afeworki Abay and Westphal, 2021; Otten and Afeworki Abay, 2022). The colonial constructions of the ‘others’ whose perspectives are often ignored in the hegemonic discourse are problematic not only because they shape and maintain power relations, but also because of their intersectional effects on the life situations of many marginalised communities. The main aim of this article is therefore to ask how the multiple forms of epistemic violence that are deeply embedded in existing discursive practices of othering, including in academic discourses on disability and forced migration, can be addressed more effectively by adopting critical approaches in participatory research. We first question the common but harmful construction of ‘hard to reach’ groups, arguing that this type of labelling constitutes a form of othering. We then highlight how participatory research can transcend such epistemic violence by foregrounding local, situated, subaltern knowledges and working with community members to pursue a different understanding of the challenges and conditions of life they face,

272

Robel Afeworki Abay and Hella von Unger

co-develop solutions and ideally create a lasting positive impact. As a third step, we then discuss how the concept of ‘cultural humility’ facilitates critical reflection on our positionalities and the power imbalances between academic researchers and research partners. This chapter thus attempts to contribute to methodological discussions on how to eliminate the powerful construction of ‘hard to reach’ populations focussing on collaborative bottom-up approaches in the fields of disability and forced migration. This chapter does not, however, claim to provide a comprehensive account of decolonising research methodologies, nor does it seek to do so. It simply marks an attempt to stimulate further discussion on the need to address and explore ways of overcoming the existing dynamics of othering that affect academic researchers due to our privileged social positionalities. We seek to illustrate how participatory research incorporates methodological flexibility and specific principles to enable the equal and active participation of all research partners throughout the research process as a way of counteracting the danger of (unintentional) othering through research. However, in practice, participatory approaches are complex and entail challenges on many levels. The chapter thus concludes with implications and recommendations for developing cultural humility in participatory research and other dynamics of participation in various social contexts. The construction of ‘hard to reach’ groups as a form of othering Many discourses in health and social care, as well as academic discourses on research methodologies, label certain groups ‘hard to reach’. The groups so described include migrant groups and other socially marginalised and disadvantaged groups such as racialised minorities, disabled and poor people. By labelling these groups ‘hard to reach’, it is implied that they occupy a somewhat marginalised position in society generally and it is difficult to get through to them in terms of social contact and communication: the phrase implies that they are hostile or at least ‘difficult’ and unwilling to participate in an activity (Afeworki Abay and Engin, 2019; Wöhrer et al., 2020). Within this research context, being labelled as ‘hard to reach’ is essentialised and treated as an alleged feature of the group instead of as a descriptor of a relationship between a speaker and a group. No single social group is per se genuinely ‘hard to reach’: whether or not a group can be reached in terms of finding a means of communication, establishing a social relationship with them or involving them in research depends on the position, skills and social location of the speaker – and, of course, the form and content of the information conveyed. Thus, when academics and other professionals call a group ‘hard to reach’, they tend to forget that this group may be ‘hard to reach’ for them, but not for others. They assume the existence of a supposedly neutral and objective position from which they speak. As such, this is a classic example of othering.

Cultural humility in participatory research

273

Let us take a brief moment to review what we mean by ‘othering’. The term refers to the social construction of marginalised others from a hegemonic point of view. Othering is thus more than a label assigned to another; it is a powerful way of re/producing the inequality and oppression of the other. The term was first introduced in the second half of the 20th century by postcolonial thinkers such as Edward W. Said (1978) and Gayatri C. Spivak (1985, 1988), who deconstructed the claims to universality of Western knowledge on colonised societies. They showed that Western perspectives, including academic knowledge, are not neutral and objective, but fundamentally shaped by the privileged and partial location of those who speak, in this case by the Eurocentric standpoint of the colonisers. Western constructions of the colonised other are self-serving imaginaries that justify the suppression of the other. Speaking from the privileged position of a predominantly White, Western majority society, colonised societies, their descendants and other groups are constructed as different, dangerous and inferior. Othering thus re/produces and legitimises power relations, inequalities and forms of exclusion. The constructions are characterised by simplification, homogenisation and the attribution of negative characteristics, amounting to a ‘demonisation’ of the other (Castro Varela and Mecheril, 2016). However, the constructions can also contain positively connoted aspects, as in the case of ‘exotic’ features being attributed to the ‘other’ in an expression of desire for them (Hall, 1997) or the case of wellmeaning paternalism such as benevolent othering (Grey, 2016). At the same time, othering not only creates an image of the other, but also an image of the ‘self’; a collective self that is assigned a positive value and that (explicitly or implicitly) serves as the standard of normality. For example, Said (1978) showed that Western representations of the ‘Orient’ contain both pejorative and exoticising attributions, which ultimately make Europe and the West appear fundamentally more civilised and superior. Ha, al-Samarai and Mysorekar (2007) point out that ‘white normality’ is also anchored in German institutions and political and socioeconomic structures, including cultural and academic knowledge production. Through processes of racialisation, culturalisation, and minoritisation, one-sided relations of looking and speaking are created: ‘The white norm speaks, judges, and remains invisible in this powerful process; the “others” are discussed, analysed, and devalued, becoming supposedly silent, history-less objects’ (Ha, al-Samarai and Mysorekar, 2007, p. 10; translated from German). These powerful practices of silencing those who have been historically ‘othered’ are inherent in discourses both in forced migration and disability studies (Afeworki Abay, Schülle and Wechuli, 2021; Korntheuer, Afeworki Abay and Westphal, 2021). The assumption that one can become an expert in the culture of the ‘other’ has been widely criticised as simplistic and maintaining an implicit superiority towards the ‘culturalised other’ (Azzopardi and McNeill, 2016; Tascón and Gatwiri, 2020), especially when White people and other privileged

274

Robel Afeworki Abay and Hella von Unger

groups aim to learn about the culture of marginalised communities in order to work with ‘them’. The concept of cultural competence fails to understand intersectional identities of marginalised communities, which again often leads to the powerful construction and manifestation of further notions and dichotomised processes of ‘us’ and ‘them’ (Fisher-Borne, Montana Cain and Martin, 2015). The powerful construction of the focus on the ‘other’ may then, in turn, be translated to the assumption that, e.g., being White and from a Western culture is the norm, while ‘diversity’ is defined by being nonWhite, non-Western, non-heterosexual, non-disabled, etc. Moreover, this notion of culture as monolithic reproduces the biased understandings of various group identities of the ‘other’. However, not only is culture dynamic in nature, but also ‘power has multiple sources and is understood to operate dynamically within social and political arenas’ (Castro Varela and Dhawan, 2016, p. 11). Othering is therefore not a value-free form of differentiation between the ‘self’ and ‘other’. Instead, the term describes a biased world view hinging on a relationship of oppression. Originally referring to the relationship between colonial powers and colonised societies, today the term refers to various constructions along multiple, intersecting axes of difference and oppression. In one way or another, otherness is ascribed (both willingly and unwillingly) from a privileged point of view in order to justify inequality and oppression. For the affected groups, this has not only severe material consequences, but also symbolic and discursive repercussions. As Spivak (1988) pointedly summed up in her question, ‘Can the subaltern speak?’, it leads to a situation of epistemic violence and epistemic injustice in which disempowered and marginalised groups are silenced, not heard and discriminated against in their position as knowing subjects (Fricker, 2007). Participatory research as an alternative methodological approach Participatory research offers a methodological means of counteracting othering through partnerships with marginalised communities and disadvantaged groups who are typically ‘othered’. Members of these groups and communities are involved as research partners from the very conception of a research idea through all the phases of the research process (Israel et al., 2018). There are a variety of approaches to participatory research, including action research, participatory action research, critical participatory action research, community-based participatory research (CBPR) and many more (Brydon-Miller et al., 2011; Fine and Torre, 2019; Martinez-Vargas, 2022; Minkler, 2014; von Unger, 2014, 2018). While the ‘microphysics of participation’ (Doná, 2007) differ between approaches, there are some commonalities. Participatory research aims not only to generate knowledge, but also to change social reality and generate benefits for the communities involved. As such, it places a strong emphasis on ethical research relationships that go beyond the ‘do no harm’ principle (Hugman, Pittaway and

Cultural humility in participatory research

275

Bartolomei, 2011; Mackenzie, McDowell and Pittaway, 2007) and the need for a continuous practice of reflexivity in the process (von Unger, 2021). In radically challenging the common notion of ‘who is an expert, what counts as knowledge and, therefore, by whom research questions and designs should be crafted’ (Fine and Torre, 2019, p. 435). Communities are viewed and approached as active research partners, but also as knowing subjects with important research capacities and as beneficiaries of the process (Afeworki Abay and Engin, 2019). Moreover, participatory research seeks to create equitable research environments in the pursuit of shared goals such as health equity or social and environmental justice (von Unger, 2014). Community and academic partners collaborate as equals – each bringing their own experience and skills to the joint endeavour (Brydon-Miller et al., 2011). Thus, topics can be addressed, and research questions can be formulated in a way that is relevant to the communities and views the marginalised groups and communities from a perspective based on resources, not deficits. To give one example, a participatory research project on HIV prevention with migrants in Germany (PaKoMi) involved various community partners (from African immigrant communities as well as Russian-speaking, Turkish-speaking and Bulgarianspeaking social worlds). The project was able to refute the widespread perspective among professionals that migrants were generally ‘hard to reach’ (von Unger and Gangarova, 2012; von Unger et al., 2013). The project clearly showed that no group is hard to reach for everyone; the level of difficulty depends on who is reaching out to whom. ‘Reachability’ is a relational phenomenon that depends on the relationship, i.e., the proximity or social distance, between specific parties. Through community participation, peer models of communication and partnerships with stakeholders, social distance can be mitigated and reduced. However, this is only attractive to communities if they benefit from the partnership as well – and if they have a say in the question of how an issue is framed and who is approached with what agenda. Community participation for strategic purposes only, without sharing the power to name, frame and decide, can lead to instrumentalisation and exploitation – and thus reproduce the persistence of disempowerment. It has been pointed out that to avoid such unintended effects, critical self-reflexivity is a much-needed practice in participatory research, and the concept of ‘cultural humility’ has been described as helpful and appropriate (Israel et al., 2018). Cultural humility in participatory research The term ‘cultural humility’ was coined by Tervalon and Murray-García (1998) in the context of training healthcare providers to better serve a diverse range of patients. The term has been picked up in various healthrelated fields and the social sciences, including social work, to advance the previous discussion on ‘cultural competence’. The concept of ‘cultural

276

Robel Afeworki Abay and Hella von Unger

competence’ has witnessed a variety of different approaches in the past three decades aiming at creating more awareness and responding effectively to issues around difference and diversity. It has been understood ‘as an ongoing process whereby one gains awareness of, and appreciation for, cultural diversity and an ability to work sensitively, respectfully, and proficiently with those from diverse backgrounds’ (Azzopardi and McNeill, 2016, p. 2). However, Tervalon and Murray-García (1998) point out that the concept of ‘cultural competence’ fails to promote a critical consciousness that assesses and challenges power imbalances and personal biases. It also fails to examine sociopolitical mechanisms and institutional processes that promote and perpetuate ethno-racial injustices resulting from perceived cultural differences from the dominant culture (Danso, 2018). It is imperative to address issues of power relations in research as ‘power (e.g., positionality, education, income, and privilege) usually resides with academic researchers who are often white and live outside the communities they partner with. “Outside” experts can be faced with the dilemma of reinterpreting “insider” knowledge’ (Muhammad et al., 2018, p. 50). Current conceptualisations of diversity extend beyond ‘race, religious observances, or material artifacts to include subjective experiences associated with the multiple social locations in which individuals are immersed, including age, gender, sexual orientation, (dis)ability, socioeconomic status, geography, and political affiliation, among other diversities’ (Azzopardi and McNeill, 2016, p. 2). Although certain groups of people may share a common history, attributes and practices, it does not mean that they are entirely homogeneous. Nevertheless, conceptualisations of cultural competence often act to legitimise the processes by which the identities of nonWhite and racialised groups are othered, while other intersectional aspects that influence culture, such as gender, sexuality, class and disability, tend to be left out (Fisher-Borne, Montana Cain and Martin, 2015). However, these essentialist and minimalist assertions are highly problematic not only as they ignore intersections of identities, but also because they treat culture as a static, monolithic and inflexible construct that does not change over time. Therefore, it is important to highlight that intersectionality is not simply about ‘additive’ forms of discrimination; rather, it is about critical analysis of the specific intersections of discrimination and privileges: ‘experiences of racism, sexism, ableism, or classism cannot simply be separately considered within different fields that exist in isolation of each other’ (Castro Varela and Dhawan, 2016, p. 11). Accordingly, implementing an intersectional lens is indispensable to understand the complexity of social identities and – following participatory research approaches – to address interlinked forms of discrimination such as ableism and racism as discursive and institutionalised practices of difference, discrimination and dehumanisation (Afeworki Abay, 2022). Crenshaw (1991) notes that ‘women of colour experience racism in ways not always the same as those experienced by men of colour and sexism in ways not

Cultural humility in participatory research

277

always parallel to experiences of white women’ (p. 1252). This implies that individuals’ experiences often do not mirror the collective experiences of a whole community. It should be highlighted that understanding intersectional discrimination and the conditions of life in communities constructed as a homogeneous group is complex. Hence, the production of empirical knowledge about a certain group must always be viewed as tentative and as something that, when applied, can neither be generalised nor transferred to an individual, family or group (Azzopardi and McNeill, 2016). The concept of cultural competence has been criticised on the following grounds: 1) it focuses on ‘comfort with “others”’ through self-awareness; 2) it uses ‘culture as a proxy for minority racial/ethnic groups’ identity’; 3) it emphasises the attempt to ‘know’ and become ‘competent’ in understanding others; and 4) it lacks a transformative social justice agenda (Fisher-Borne, Montana Cain and Martin, 2015, p. 169). Cultural humility, on the other hand, focuses on the position of non-knowing. Instead of aiming for mastery and competence, cultural humility encourages three principles: 1) ‘committing to an ongoing process of compassionate self-awareness and inquiry, supported by a community of trusted and cognitively-diverse colleagues’, 2) ‘being open and teachable’; trying to see culture from the point of view of the other, and 3) considering how social systems, power and privilege have shaped reality (Gottlieb, 2021, p. 463ff). Cultural humility acknowledges the subjectivity and fluidity of culture and cultural experiences while at the same time calling on both individual practitioners and institutions to address social inequalities, analyse privileges and mitigate power imbalances (FisherBorne, Montana Cain and Martin, 2015; Tascón and Gatwiri, 2020). When trying to do research with supposedly ‘hard to reach’ groups, it is important to be ‘flexible and humble enough to let go of the false security that stereotyping brings’ (Tervalon and Murray-García, 1998, p. 119). Cultural humility may offer an alternative framework that acknowledges the dynamic nature and complexity of culture, challenges power imbalances and is characterised by personal accountability, authenticity, flexibility and humbleness rather than a focus on mastery in understanding the ‘other’ (Fisher-Borne, Montana Cain and Martin, 2015). The notion of cultural humility features prominently in the contemporary discourse on participation in research by many marginalised communities. However, Danso (2018) argues that the concept lacks ‘conceptual clarity and definitional unanimity among its advocates’ (p. 424) and empirical evidence (p. 425). The underlying ideas were previously developed by anti-oppressive practice, so the notion of cultural competence should not be eagerly replaced with cultural humility. By taking a critical stance against injustice and inequality, participatory research offers an important methodological tool to generate knowledge from diverse epistemic positions: the experience of members of marginalised communities forms the basis from which to start the research process. Over the course of the collaboration, the perspectives, skills and knowledges of all

278

Robel Afeworki Abay and Hella von Unger

participating partners are used to generate new insights through storytelling, listening, interpreting empirical data and theorising. In this process, power sharing and co-learning create good conditions to avoid othering. However, inequality can be reproduced unwillingly by the collaborating partners. Collaborative and emancipatory research is not immune to reproducing power inequalities, including racism (Muhammad et al., 2018). The call for critical self-reflexivity has thus been built into participatory methodologies for good reason (Wallerstein, 1999). Tervalon and Murray-García (1998), coming from a background in medicine and nursing, were amongst the first to speak about cultural humility as a concept. They define cultural humility as a theoretical framework and a process that requires humility as individuals continually engage in selfreflection and self-critique as lifelong learners and reflective practitioners, […] that requires humility in how physicians bring into check the power imbalances that exist […] that requires humility to develop and maintain mutually respectful and dynamic partnerships with communities (p. 118). One of the key principles of CBPR states that CBPR addresses issues of race, racism and social class and embraces cultural humility (Israel et al., 2018). We argue that the concept of cultural humility can be a fruitful strategy used by decolonial ethics to analyse positionality and power relations during research with marginalised communities. Methodological and ethical implications For a long time, migrants and refugees with disabilities have been largely excluded from active participation in research based on the assumption that access to them is not possible with traditional social research methods due to high linguistic, cultural and social barriers (Afeworki Abay and Engin, 2019). In the last ten years, participation in research by many marginalised communities, such as disabled migrants and refugees, has increasingly become the focus of discourse among political activists and academics. The complex nexus between forced migration and disability has arguably been the central focus of the German-speaking academic discourse. However, very little effort has been made to foreground an intersectional understanding of marginalised groups’ invisibility in research and to reflect on precisely how marginalised and excluded certain groups as ‘hard to reach’ – instead established structures of political, social and cultural institutions of critically analysing why they had become ‘hard to reach’ (Korntheuer, Afeworki Abay and Westphal, 2021; Otten and Afeworki Abay, 2022). Concurring with Fiona Kumari Campbell (2008, para 3), ableism can be understood as a ‘set of assumptions (conscious or unconscious) and practices that promote differential or unequal treatment of people because of actual or presumed disabilities’. In this regard, it can be argued that

Cultural humility in participatory research

279

ableism is also part of the hegemonic knowledge production where disabled people have been denied the privilege to participate in research. Ableist thoughts, practices and structures are institutionalised to treat disabled people as the ‘other’ through the hegemonic notion of normalcy (Campbell, 2008). Similarly, migrants have been excluded from research, as knowledge has continuously been produced about them and not with them (Afeworki Abay, Schülle and Wechuli, 2021). Participatory approaches are therefore relevant to transcend hegemonic ontologies and epistemologies and to co-produce knowledge with marginalised communities by facilitating the necessary conditions to ‘reclaim and tell their stories in their own ways and to give testimony to their collective herstories and struggles’ (Smith, 2005, p. 89). Over the decades, the methodological construction of ‘hard to reach’ groups has become a central issue in German academic discourse, including participatory research (Aden et al., 2019; Afeworki Abay and Engin, 2019). The fields of forced migration and disability studies, in particular, hold many challenges for scholars engaging in participatory research; these include particular methodological requirements, practical research limitations (among others, money and time wise) and questions of research ethics (Afeworki Abay, 2022; Korntheuer, Afeworki Abay and Westphal, 2021). Participatory research aims to foreground community knowledge by conducting research with those who are affected by the research topic and placing their perspectives at the centre of the research throughout the research process (von Unger, 2014). This methodological paradigm shift in research procedures, methods of data collection and analysis illustrates how marginalised communities presumed to be particularly ‘hard to reach’, can be involved in the production of knowledge about them (Korntheuer, Afeworki Abay and Westphal, 2021; Otten and Afeworki Abay, 2022). Based on our own research experiences, it is important to critically examine the possibilities of developing accessible, bottom-up research methods that also reflect on various ethical concerns. It can be argued that particular ethical challenges exist when research is conducted within institutional settings, when research partners receive services or when they are part of a programme, as these conditions can create dependency and exploitability (Afeworki Abay and Engin, 2019). Increasing efforts can be observed in academic praxis to develop innovative research approaches in these contexts. Participatory research emphasises collaborative, equitable partnerships among researchers, stakeholders and community members through all the phases of the research (Gangarova and von Unger, 2020). Reflecting on the ethical challenges of participatory research with marginalised communities who are mostly labelled ‘hard to reach’ for research and praxis, an intersectional lens is indispensable in critical reflections on how vulnerability is constructed in hegemonic discourses and research projects (see in this book: Yeo and Afeworki Abay). In addressing these questions

280

Robel Afeworki Abay and Hella von Unger

of research ethics and methodological issues, the following questions are central: Which groups are considered or constructed as ‘hard to reach’? Who is speaking? What is the implicit position or explicit perspective of the speaker? Who is not speaking or not being heard? What barriers foster the systematic exclusion of certain groups from research? How are power imbalances between academic researchers and research partners addressed during participatory collaboration? Is there a space for reflexivity and discussion? How can research strengthen research partners’ self-determination and empowerment? What ethical guidelines are needed to go beyond ‘doing no harm’ when carrying out research with vulnerable and marginalised groups? (Mackenzie, McDowell and Pittaway, 2007) In tackling such questions of how to ethically and sustainably implement bottom-up participatory approaches in research practice, it is important to be aware of the existing issues faced by the communities involved in the research process, as their life situations might be shaped by multiple, intersectional experiences of marginalisation and discrimination. Self-representation by many marginalised communities (such as migrants and disabled people) as a collective strategy of resistance is often invisible and suppressed in hegemonic discourses. Thus, enabling the active participation of all partners throughout the research process is often challenging and requires comprehensive resources in terms of time, space and money as well as a high level of commitment and flexibility on all sides (Afeworki Abay and Engin, 2019; Otten and Afeworki Abay, 2022; Wöhrer et al., 2020). In addition, experience gained during various recent empirical studies in the context of forced migration and disability illustrates that, in addition to the theoretical and conceptual challenges, the choice of participatory approaches is also subject to multiple methodological and structural conditions related to scientific obligations and research funding (Korntheuer, Afeworki Abay and Westphal, 2021). Participatory research promises to generate new, local, community-based knowledge by developing bottom-up, democratic research practice. However, collaboration efforts must first address structures and resources that are conducive to partnership-based cooperation between academia, practitioners, and the communities whose conditions of life are the subject of research. Conclusion and implications This chapter highlighted how the categorisation of certain groups as ‘hard to reach’ perpetuates othering and exclusion even if the intention is to include

Cultural humility in participatory research

281

these groups more effectively in a specific activity (such as research) or system of care. One way to avoid such unintended effects is to relabel these groups as ‘seldom heard’ (Schaefer, Kümpers and Cook, 2021) and think of strategies for including them. Another solution is to avoid a deficit-oriented descriptor altogether and instead address the groups and communities using the labels and categories they themselves use for self-identification. The concept of cultural humility strives for critical positionality as a key element of the research process that specifically involves applying continuous self-reflection and more broadly involves critical reflection on power relations within society. Moreover, cultural humility incorporates critical reflection when engaging with materialities, positionalities and aspects of ownership of the data and fosters pluriversality by overcoming Eurocentric knowledge production and its claims to universality. This chapter has raised many questions, including how to overcome the epistemic violence that is embedded in power imbalances between academic researchers and research partners from marginalised communities (for instance, communities of migrants or disabled people). Therefore, it can be argued that the implementation of power-reflexive, bottom-up and decolonial approaches in participatory research could be significant in overcoming the coloniality of power and knowledge. In conclusion, it can be stated that there is a need for cultural humility and continuous reflection on geopolitics in ontological and epistemological terms. References Aden, S. et al. (2019) ‘Partizipative Fluchtmigrationsforschung. Eine Suchbewegung’, Z‘Flucht. Zeitschrift für Flucht- und Flüchtlingsforschung, 3(2), pp. 302–319. Afeworki Abay, R. (2022) ‘Decolonise Behinderung und Flucht/Migration: Partizipative Forschung als Möglichkeit methodologischer Dekolonialisierungsarbeit’, in Y. Akbaba and A. M. B. Heinemann (eds.) Erziehungswissenschaft dekolonisieren. Theoretische Grundlagen und transnationale Debatten. Weinheim: Beltz Juventa, pp. 536–553. Afeworki Abay, R., Schülle, M., and Wechuli, Y. (2021) ‘Decolonising disability: Eine postkoloniale Reflexion auf Behinderung für die deutschsprachige Fluchtmigrationsforschung unter Berücksichtigung der intersektionalen Lebensrealitätsen’, in M. Bach, L. Narawitz, J. Schröder, M. Thielen and N.-M. Thönneßen (eds.) FluchtMigrationsForschung im Widerstreit – Über Ausschlüsse durch Integration. Münster: Waxmann, pp. 117–130. Afeworki Abay, R., and Engin, K. (2019) ‘Partizipative Forschung: Machbarkeit und Grenzen. Eine Reflexion am Beispiel der MiBeH-Studie’, in B. Behrensen and M. Westphal (eds.) Fluchtmigrationsforschung im Aufbruch. Methodologische und methodische Reflexionen. Wiesbaden: Springer VS, pp. 379–396. Alatas, S. F. (2003) ‘Academic dependency and the global division of labour in the social sciences’, Current Sociology, 51(6), pp. 599–613. Anderson, B. (2013) Us and them?: The dangerous politics of immigration control. Oxford: Oxford University Press. Azzopardi, C., and McNeill, T. (2016) ‘From cultural competence to cultural consciousness: Transitioning to a critical approach to working across differences

282

Robel Afeworki Abay and Hella von Unger

in social work’, Journal of Ethnic and Cultural Diversity in Social Work, 25(4), pp. 282–299. Brydon-Miller, M. et al. (2011) ‘Jazz and the Banyan tree: Roots and riffs on participatory action research’, in N. K. Denzin and Y. S. Lincoln (eds.) The SAGE handbook of qualitative research. Thousand Oaks, CA: Sage, pp. 387–400. Campbell, F.- K. (2008) ‘Refusing able(ness)’, M/C Journal, 11(3). Available at: http://journal.media-culture.org.au/index.php/mcjournal/article/view/46 Castro Varela, M. d. M., and Dhawan, N. (2016) ‘What difference does difference make? Diversity, intersectionality and transnational feminist politics’, Wagadu. A Journal of Transnational Women’s and Gender Studies, 16, pp. 10–37. Castro Varela, M. d. M., and Mecheril, P. (2016) ‘Die Dämonisierung des Anderen. Einleitende Bemerkungen’, in M. d. M. Castro Varela and P. Mecheril (eds.) Die Dämonisierung der Anderen. Rassismuskritik der Gegenwart. Bielefeld: Transcript, pp. 7–20. Crenshaw, K. W. (1991) ‘Mapping the margins: Intersectionality, identity, and violence against women of color’, Stanford Law Review, 43(6), pp. 1241–1300. Danso, R. (2018) ‘Cultural competence and cultural humility: A critical reflection on key cultural diversity concepts’, Journal of Social Work, 18(4), pp. 410–430. de Sousa Santos, B. (2018) ‘Introduction: Why the epistemologies of the South? Artisanal paths for artisanal futures’, in B. de Sousa Santos (ed.) The end of the cognitive empire: The coming of age of epistemologies of the South. Durham: Duke, pp. 1–16. Doná, G. (2007) ‘The microphysics of participation in refugee research’, Journal of Refugee Studies, 20(2), pp. 210–229. Fine, M., and Torre, M. E. (2019) ‘Critical participatory action research: A feminist project for validity and solidarity’, Psychology of Women Quarterly, 43(4), pp. 433–444. Available at: doi: 10.1177/0361684319865255 Fisher-Borne, M., Montana Cain, J., and Martin, S. L. (2015) ‘From mastery to accountability: Cultural humility as an alternative to cultural competence’, Social Work Education, 34(2), pp. 165–181. Fricker, M. (2007) Epistemic injustice. Power and the ethics of knowing. Oxford: Oxford University Press. Available at: 10.1093/acprof:oso/9780198237907.001. 0001 Gangarova, T., and von Unger, H. (2020) ‘Community mapping als methode’, in S. Hartung, P. Wihofszky and M.-T. Wright (eds.) Partizipative Forschung: Ein Forschungsansatz für Gesundheit und seine Methoden. Wiesbaden: Springer VS, pp. 143–177. Gottlieb, M. (2021) ‘The case for a cultural humility framework in social work practice’, Journal of Ethnic and Cultural Diversity in Social Work, 30(6), pp. 463–481. Grey, F. (2016) ‘Benevolent othering. Speaking positively about mental health service users’, Philosophy, Psychiatry and Psychology, 23(3-4), pp. 241–251. Ha, K.-N., al-Samarai, N.-L., and Mysorekar, S. (2007) ‘Einleitung’, in K.-N. Ha, N.-L. al-Samarai and S. Mysoreka (eds.) Re-, Visionen. Postkoloniale Perspektiven von People of Color auf Rassismus, Kulturpolitik und Widerstand in Deutschland. Münster: Unrast, pp. 9–23. Hall, S. (ed.) (1997) Representation: Cultural representations and signifying practices. London: Sage Publications, Inc; Open University Press. Hugman, R., Pittaway, E., and Bartolomei, L. (2011) ‘When “do no harm” is not enough. The ethics of research with refugees and other vulnerable groups’, British Journal of Social Work, 41(7), pp. 1271–1287. Israel, B. et al. (2018) ‘Critical issues in developing and following community-based participatory research principles’, in N. Wallerstein, B. Duran, J. Oetzel and

Cultural humility in participatory research

283

M. Minkler (eds.) Community-based participatory research for health. San Francisco, CA: Jossey-Bass, pp. 31–46. Korntheuer, A., Afeworki Abay, R., and Westphal, M. (2021) ‘Forschen in den Feldern von Flucht und Behinderung: Ein Vergleich von forschungsethischen Herausforderungen und notwendigen forschungspraktischen Rahmenbedingungen’, in J. Franz and U. Unterkofler (eds.) Forschungsethik in der Sozialen Arbeit: Prinzipien und Erfahrungen. Theorie, Forschung und Praxis der Sozialen Arbeit. Berlin: Barbara Budrich, pp. 229–242. Mackenzie, C., McDowell, C., and Pittaway, E. (2007) ‘Beyond “do no harm”: The challenge of constructing ethical relationships in refugee research’, Journal of Refugee Studies, 20(2), pp. 299–319. Martinez-Vargas, C. (2022) Democratising participatory research. Pathways to social justice from the South. Cambridge, UK: Open Book Publishers. Meekosha, H. (2011) ‘Decolonising disability: Thinking and acting globally’, Disability and Society, 26, pp. 667–682. Mignolo, W. D. (2007) ’Delinking: The rhetoric of modernity, the logic of coloniality and the grammar of de
coloniality’, Cultural Studies, 21(2
3), pp. 449–514. Mignolo, W. D. (2009) ’Epistemic disobedience, independent thought and decolonial freedom’, Theory, Culture & Society, 26(7–8), pp. 159–181. Minkler, M. (2014) ‘Community-based participatory research’, in D. Coghlan and M. Brydon-Miller (eds.) The SAGE encyclopedia of action research. London: SAGE Publications Ltd, pp. 153–156. Muhammad, M. et al. (2018) ‘Understanding contemporary racism, power, and privilege and their impacts on CBPR’, in J. Oetzel and M. Minkler (eds.) Community-based participatory research for health: Advancing social and health equity. San Francisco, CA: John Wiley and Sons, pp. 47–59. Otten, M., and Afeworki Abay, R. (2022) ‘Partizipative Teilhabeforschung an der Schnittstelle Behinderung und Fluchtmigration’, in G. Wansing, M. Schäfers and S. Köbsell (eds.) Teilhabeforschung - Konturen eines neuen Forschungsfeldes. Wiesbaden: Springer VS, pp. 367–384. Quijano, A. (2000) ‘Coloniality of power and Eurocentrism in Latin America’, International Sociology, 15(2), pp. 215–232. Quijano, A. (2007) ‘Coloniality and modernity/rationality’, Cultural Studies, 21(2-3), pp. 168–178. Rodríguez, C. O. (2018) Decolonising academia: Poverty, oppression and pain. Winnipeg: Fernwood Publishing. Said, Edward W. (ed.) (1978) Orientalism: Western conceptions of the Orient. New York, NY: Vintage. Schaefer, I., Kümpers, S., and Cook, T. (2021) ‘“Selten Gehörte” für partizipative Gesundheitsforschung gewinnen: Herausforderungen und Strategien’, Bundesgesundheitsblatt 64(2), pp. 163–170. Smith, L. T. (2005) ‘On tricky ground: Researching the native in the age of uncertainty’, in N. K. Denzin and Y. S. Lincoln (eds.) The Sage handbook of qualitative research. London: Sage Publications Ltd, pp. 85–107. Smith, L. T. (ed.) (1999) Decolonising methodologies: Research and indigenous peoples. New York, NY: Palgrave. Spivak, G.-C. (1985) ‘The Rani of Sirmur. An essay in reading the archives’, History and Theory, 24(3), pp. 247–272. Spivak, G.-C. (1988) ‘Can the subaltern speak?’, in C. Nelson and L. Grossberg (eds.) Marxism and the interpretation of culture. Wien/Berlin: Turia & Kant, pp. 271–313. Tascón, S. M., and Gatwiri, K. (2020) ‘Towards cultural humility: Theorising cultural competence as institutionalised whiteness’, Social Work and Policy Studies: Social Justice, Practice and Theory, 3(1), pp. 1–16.

284

Robel Afeworki Abay and Hella von Unger

Tervalon, M., and Murray-García, J. (1998) ‘Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education’, Journal of Health Care for the Poor and Underserved, 9(2), pp. 117–125. von Unger, H. (2014) Partizipative Forschung. Einführung in die Forschungspraxis. Wiesbaden: Springer VS. von Unger, H. (2018) ‘Ethische Reflexivität in der Fluchtforschung. Erfahrungen aus einem soziologischen Lehrforschungsprojekt’, Forum Qualitative Social Research, 19(3), Art. 6. Available at: 10.17169/fqs-19.3.3151. von Unger, H. (2021) ‘Ethical reflexivity as research practice’, Historical Social Research, 46 (2), pp. 186–204. von Unger, H. et al. (2013) ‘Stärkung von Gemeinschaften. Partizipative Forschung zu HIV-Prävention mit Migrant/innen’, Prävention und Gesundheitsförderung, 8(3), pp. 171–180. von Unger, H., and Gangarova, T. (2012) PaKoMi handbook. HIV prevention for and with migrant communities. Berlin: Deutsche Aidshilfe. Wallerstein, N. (1999) ‘Power between evaluator and community: Research relationships within New Mexico’s healthier communities’, Social Science and Medicine, 49, pp. 39–53. Wöhrer, V. et al. (2020) ‘‘Hard to reach’ or ‘easy to ignore’. Strategies and reflections on including co-researchers’, Proceedings of Science.

Index

Pages in italics refer to figures, and pages followed by n refer to notes. Afeworki Abay, R. 4–5, 7 Abbas, A. 169n1 Abdulla, R. 169n1 Abdulrahman, L. 169n1 ableism 6, 26–29, 31–32, 34, 36–38, 41–43, 52, 53, 59, 60–61, 121–127, 129, 130, 132, 140, 145, 160–162, 167–169, 209, 212, 225–226, 245, 247, 249, 254, 255, 262, 276, 278, 279 Aboriginal/ Aborigines Protection Acts 72 Abudu, K. U. 5 Adams, G. 123 Adegbindin, O. 101, 110 African communitarianism 102 African relational community: obligations in African indigenous thought 14–16; obligations to people with disabilities 16–18 African Religions and Philosophy 103 Ahmad, K. 158 Akan thought system 106 Akbar, R. 199 Al-Aoufi, H. 189 Alexander, J. 32 Ali, K. 78, 169n1 Ali, R. 169n1 Alli, P. O. 107 al-Samarai, N.-L. 273 Al-Zyoud, N. 189 Anderson, B. 210 Anthropocene, necropolitics 130–132 anti-Black racism 26, 36 anti-Black violence 37 anti-Romani racism: disabling 89–90; postcolonial perspectives 91–92

Anzaldua, G. 53 attitudinal ableism 161 Australian national identity 78 Autism Bangladesh 177 autism spectrum disorder (ASD): access to medical service 180–183; caring for a child 184; competitive culture and privatisation 184; discrimination and social prejudice 172; issues of affordability 180–183; lack of knowledge 177–179; lack of social acceptance of children 183–184; mothers of children 184; neoliberal and patriarchal influences 185; patriarchy and neoliberalism 174–176; qualitative and social media research 176–177; social welfare ministry 172; stress, shame, and guilt of the mothers 179–180; therapy and education 180–183 Awólàlú, J. O. 110, 111 Bailey, M. 42, 43 Bakhtin, M. 56 Bakr, M. 169n1 Barton, E. 75 Baynton, D. C. 208, 209 Bazna, M. S. 190 Bélanger, J. 144 Bentham’s panopticon 45 Berghs, M. 5, 116, 122, 212, 244 Bilge, S. 8 Black feminism 33, 122 Black, Indigenous and People of Colour (BIPOC) 4, 5, 27, 33, 34, 37, 43, 90, 120–128, 131, 132, 139, 259 Black Lives Matter (BLM) 26, 120, 147

286

Index

Bleakley, J. 75 Bowleg, L. 261, 264 Bozarslan, H. 158 Braxton, S. 40, 41 Brown, M. 39 Burch, S. 30, 31 Burns, N. 6, 7 Campbell, F. A. K. 38, 129, 145, 278 Canton Asylum 30, 31 Cárdenas, M. E. 58, 59 Carlson, B. 68, 72, 77 Cartwright, S. 40 Chataika, T. 114 Childs, D. 45 Choudry, A. 60 Christoffersen, A. 258 claiming crip 147 Claire, B. 175 Clifford, J. 87 Collins, P. H. 8, 227, 253 Coloma, R. 41 colonial and ableist constructions: ableism and racism in postcolonial moment 225–226; asylum system in Germany 219–220; asylum system in United Kingdom 220–221; current initiatives with disability and forced migration 221–225; hegemonic framing of vulnerability 226–227; hegemonic regressive approach 225–227; intersectionality 227–228; “migration crisis” in Germany 227; overview 218–219; segregation of refugees 228 colonialism 3, 5, 8, 11–13, 30–34, 41, 45, 68, 69, 71, 86, 90, 91, 121, 126, 127, 139, 142, 145–147, 150, 158, 205, 207–209, 212, 213, 225, 229, 239, 240, 254, 255, 270 community-based participatory research (CBPR) 274, 278 Connell, R. 208, 244 Cook, C. 72 Cornell, D. 14, 15 Counter Extremism Project 78 COVID-19 pandemic 1, 70, 120, 121, 130 Crawley, H. 210 Crenshaw, K. 27, 42, 111, 122, 227, 253, 276 Crenshaw’s theory of intersectionality 68

Critical Disability Studies (CDS) 44, 101, 212, 234, 249 critical race theory 37, 38, 53, 58, 209, 212 Cronulla Riots 77 cultural humility 60, 61, 271, 272, 275–278, 281 cultural racism 35 Danso, R. 277 Dayea, W. 31 Day, M. 4, 5 de Bradley, A. A. 31 decolonial disability knowledge and praxis: context 240–242; decoloniality 238, 240; exclusion and marginalisation 239; fieldnotes in Dong Son 235–237; Future of Disability Studies 238; politics of representations 245–249, 246; social embodiment 242–245 decolonial feminists 142 decolonial theorisation of disability 32 decolonisation 12, 32, 35, 45, 94, 123, 132, 146–149, 212–213, 238, 270 decolonising disability studies: African relational community 13–18; decolonialisation 12; disability studies 13; epistemological decolonialisation 12; obligation-based approach to disability justice 19–22; obligations in African indigenous thought 14–16; obligations to people with disabilities 16–18; overview 10–11 decolonising intersectionality: BIPoC experience 121; Black feminism 122; ‘Black’ subaltern class 121; concept of 124; embracing intersectionality 123; in Germany 125–127; hegemonic discourses 123; postcolonial critique 123; reframing and rethinking 124; sickle cell disorders (SCD) 127–130; in United Kingdom 127–130 Decolonization is not a metaphor (essay) 45 degeneracy and replacement: eugenics and degeneracy 72–75; methodology 70–72; overview 68–70; white replacement anxieties 75–79 dehumanized reproduction 32 Depo-Provera 41 DesLandes, A. 140 de Sousa Santos, B. 270

Index Directive of the European Parliament 219 disability 1, 32; African humanistic and inclusive approach 114–117; cisgendered women 137; decolonial approach 101; discourses on 100, 121; gendered violence 138; injustice 11, 13, 19, 22; intersectional analysis 42; intersectionality 258–261; justice 4, 6, 10, 11, 17, 19–22, 43, 52–53, 60, 61, 147, 255, 260; medical model 101; Saharan African perspective 102; social embodiment 242–245; triple threat 70 disability discourse: IMM 192, 196–198; Indonesian Muslim Student Movement (PMII) 200–202; Islam and 190–191; KAMMI 192–196; Muslim Student Association (HMI) 198–200; Muslim student organisations, Malang 191–193; overview 189–190; quantitative descriptive data 190 disabled people: asylum system in Germany 219–220; asylum system in United Kingdom 220–221; initiatives in Germany 222–223; initiatives in United Kingdom 224–225; segregation of refugees 228 Disabled Persons’ Organisations (DPOs) 242, 259 disabled Romani people, Germany: disabling anti-Romani racism 89–90; future aspects 94–95; historical context 88–89; marginalisation 89–90; notion of indigeneity 94; overview 86–88; pluriversality 92–93; postcolonial perspectives on antiRomani racism 91–92 DisAbled Women’s Network of Canada (DAWN Canada) 256, 260–262 Doherty, E. 78 Dolmage, J. 208, 209 Downing, R. 74 Dramé, M. L. 38 Dubrow, J. K. 261 Duong, N. 245, 247 Dussel, E. 53 Dyson, S. 122 dystopian Australia 79 Easton Community Centre 220 Edwards, B. H. 56, 58

287

Emery, D. 213 Enyeribe, K. 112 epistemic labour 27, 42, 44 epistemic violence 3, 26, 27, 32, 35, 87, 89, 93, 94, 102, 123, 270, 271, 274, 281 epistemological decolonisation 32 Equality Act 128 Erevelles, N. 4 Eurocentric knowledge production 92–93 European Disability Forum 227 European sexology 73 Eze, M. O. 102 Family Planning Australia 76 Fanon, F. 35 Federal Republic of Germany 89 Feminist, Queer, Crip 43 feminist solidarity 146 Ferree, M. M. 227 fieldnotes in Dong Son 235–237 Firdaus, F. 195 Fitrianita, T. 6 Fitts, M. S. 138 Floyd, G. 26, 37, 120 flyer distributed: Brisbane, QLD 83; Sunshine Coast, QLD 85; Sydney, NSW, & Adelaide, SA 84 Forman, J. 190 Foucault, M. 45, 89 Frazer, R. 77 Freud, S. 73, 76 Gbadegesin, S. 105, 108 General Equal Treatment Act 125 Germany, disabled Romani people: disabling anti-Romani racism 89–90; future aspects 94–95; historical context 88–89; marginalisation 89–90; notion of indigeneity 94; overview 86–88; pluriversality 92–93; postcolonial perspectives on antiRomani racism 91–92 Ghai, A. 208 Gilroy, J. 70, 71 Gilroy, P. 208 Glenn, E. N. 139 Goodell, W. 29 Goodley, D. 166 Gorman, R. 43 Grand’Maison, V. 5–6 great replacement conspiracy theory 77

288

Index

great replacement theory 78 Grech, S. 13, 51, 101, 166, 208, 234 Grosfoguel, R. 131 Gunes, C. 158 Gyekye, K. 16, 17, 21, 102, 103, 106, 109 Ha, K.-N. 273 Hall, S. 56, 58, 209 Hammonds, E. 32 Hamner, H. H. 31 Hande, M. J. 44 Hankivsky, O. 253, 256 Hansen, P. 77 Hardi, B. 169n1 Hardt, M. 41 Harriet Tubman Collective 42 Hartmann, C. 176 Hasnain, R. 189 Hatab, T. A. 190 Hennerbichler, F. 157 Hiawatha Asylum 31 Hidayat, R. 197 homonationalism 43 Howard, J. 76 Hutson, C. 90 Ichsan, M. 191 Idowu, E. B. 106 Igbo, A. 112 Ilinca, C. 261 Imafidon, E. 5, 101, 105, 111, 113, 115 Immigration Act 31, 211 Immigration and Asylum Act 224 Immigration Restriction Act 72, 75 Indian Act 252 Indonesian Islamic Student Movement (PMII) 193 Indonesian Muslim Student Movement (PMII) 200–202 inter-imperialism 51, 52–53, 55–58, 61 International Monetary Fund 28 intersectional disability and gender analysis framework (iDGA) 256–258 intersectionality: African traditions 111–114; coloniality and 2–4; COVID-19 policy research 256; critical policy analysis 253–255; data and 261–265; disability 258–261; overview 252–253; policy data collection 263; transformative policy change 265 intersectionality theory 252, 254

Islamic teachings 191 Iyer, S. 213 Jaffee, L. 146 John, K. 146 Johnson, K. 156 Jordan-Zachery, J. S. 253 Kafer, A. 43, 147 Kanner, L. 174 Kasser, S. 101 Kaul, K. 38 Kaur, M. 226, 227 Kawkab, I. 169n1 Kelly, C. 44 Kim, J. B. 42 King, D. 158 Ko nifunninu 106 Kurdistan-Iraq: ableism 160–161; Battle of Chaldiran 158; disability studies 159–160; extended family interdependence 162–164; gendered ableism 167–169; government and charity 165–167; historical context 156–158; identity and community 164–165; interviews 159; Kurdish clan system 158; Kurdish identity 157; overview 156; tribalism 158 Kurtiş, T. 123 Lane, D. 79 LatCrit theory 53 Lee, B. 211 Levac, L. 255 Link, B. G. 145 Live Work Well Research Centre 256 Louw, D. J. 114 Lovern, L. 87 Lytle, R. 101 Mahmood, M. 169n1 Mahmood, R. 169n1 Majeed, M. 169n1 Makinde, M. A. 105, 110 Maldonado-Torres, N. 54, 59, 131 Manuel, T. 254 Marshall, T. H. 209 Mayblin, L. 205, 208, 209, 211, 212 Mbembe, A. 34, 38, 89, 207, 225 Mbiti, J. 102–104 McRuer, R. 38, 44, 147 medical aid in dying (MAiD) 148, 149

Index

289

medical assistance in dying (MAiD) 148, 264 Meekosha, H. 2, 12, 33, 208, 270 Mehrota, N. 162 Menjívar, C. 55, 57 Menkiti, I. 103, 105 Metz, T. 115 Mignolo, W. 53, 92, 131, 238, 239, 270 migration and disability studies: anxious engagements 207–208; borders, bordering and citizenship 209–212; colonial engagements 207–208; colonialism 208–209; intersectionality and decolonisation 212–213; ‘Missing Migrants’ project records 207; overview 205; people on the move 206–207; post/colonial subject 212–213 Miles, M. 189 Minister’s Disability Advisory Committee 256 Mitchell, D. T. 59, 208 Mobley, I. A. 42, 43 Moderate communitarianism 103 Mohanty, C. T. 32 Moore, L. 42 Moraga, C. L. 53 Morquio syndrome 100 Muhammadiyah Student Association (IMM) 192, 196–198 Murray-García, J. 275, 276, 278 Muslim Student Association (HMI) 198–200 Mustafa, R. 169n1 Mysorekar, S. 273

Oliver, M. 176, 221 Olodumare (God of Heaven) 106 Onazi, O. 4 ‘One Australia’ policy 76 Oscar Wilde’s trial 74 O’Sullivan, S. 70 Our Journey (film) 247 Oyeshile, O. A. 105 Özog
lu, H. 157

Nahdlatul Ulama (NU) 193 Naomi, S. S. 6 National Front of Indonesian Muslim Students (KAMMI) 192–196 National Socialist Network 79 Ndlovu-Gatsheni, S. 12 necropolitics 34–36, 130–132 Negri, A. 41 neoliberal ableism 41 neurodevelopmental disorders 173 Nguyen, X. T. 7, 208 non-governmental organisations (NGOs) 60, 200, 241 notion of indigeneity 86, 94

race suicide 75 Racial Hygiene Association (RHA) 76 racialised and gendered ableism: becoming disabled/becoming black 29–30; deliberations on intersectionality 27; disability and colonial subjectivities 32–34; intoxication psychosis 30; national borders 45; necropolitics 34–36; overview 26–27; pathologisation and epistemic erasure 37–43; politics of invisibility within coloniality 27–29; racism, sexism, and ableism, postcolonial moment 36–37; reproductive (in)justice, ableism, and the politics of citizenship 31–32; settler colonialism, madness and

Obiakor, E. E. 112 Oladipo, O. 106

Pacific Island Labourers Act 75 Padilla, A. 4, 239 participatory research: academic and community partners 269; alternative methodological approach 274–275; coloniality of power 270; community partners and stakeholders 271; cultural humility 275–278; decolonising research methodologies 272; discourses in health and social care 272–274; epistemic violence 271; ‘hard-to-reach’ groups 269; knowledge production 269; methodological and ethical implications 278–280; postcolonial processes 270; unintended effects 281 Pearce, E. 211 personal protective equipment (PPE) 260 Phelan, J. C. 145 Piepzna-Samarasinha, L. L. 147 Ploetz, A. 73 Puar, J. 43, 142, 239–240 Quijano, A. 131, 270 Qur’an 190, 198, 199

290

Index

reproductive (in)justice 30–31; vibrant disability justice movements 43 racism and sexism 26 Radcliffe, S. A. 93 Ramose, M. B. 104 Razack, S. H. 140 Rennie, D. 78 Rettova, A. 104 Richards, P. 77 Rights and Protection of Persons with Disability Act 175 The Right to Maim: Debility, Capacity and Disability 239 Robel, Y. 91 Roosevelt, T. 75 Rose, M. L. 6 Rose, R. 6 Rousseau, J. 76 Said, E. W. 273 Salem, S. 123, 227 Salzman, P. C. 158 Schalk, S. 42, 46n1 self-determination and futurity 146 Serlin, D. 169 Shahminan, N. 189 Shaikh, L. C. 189 Shanawani, H. 189 Shaw, S. 224 Shildrick, T. 145 Shragge, E. 60 sickle cell disorders (SCD) 127–130 Simpson, L. 239 Skleparis, D. 210 Smith, L. T. 93 Snyder, S. L. 59, 208 so-called Australia 68–76, 78 Soldatić, K. 5–6, 13, 72, 73, 87, 156, 208 Soleiman, K. 158 Soule, J. 31 Spagnuolo, N. 144 Spillers, H. 29, 30 Spivak, G.-C. 225, 270, 273, 274 Staples, J. 162 Statistics Canada 261, 262 Stienstra, D. 32 stigma 143–146 Stuit, H. 18 Sub-Saharan African communitarian philosophy 102–111

Sullivan, C. 75 Swartz, L. 166, 234, 235 Tahir, K. 169n1 Talabani, J. 158 Tarrant, B. 78 TDKRA documentary film 248, 248 Tervalon, M. 275, 276, 278 testimonios 53 Thohari, S. 6, 191 Titchkosky, T. 43 transformative justice and decolonisation 146–149 Transforming Disability Knowledge, Research, and Activism (TDKRA) 235 trans-Latinidades, disability and decoloniality: bidirectional fugitive knowledge inertia 61; central American disabled trans-Latinidades 57–60; counter-narrative power of LatDisCrit 53–54; Dussel’s transmodernities 53–54; ethno-racial pattern of homogeneity 59; interimperialism 55–57; LatDisCrit and inter-imperialism as race-based decolonial disability justice 52–53; LatDisCrit, Trans-Latinidades and Global South decolonialities 54–55; liberatory decolonial intersectionality 60 Truth and Reconciliation Commission 103 Tuck, E. 45 Tutu, D. 102–103, 115 Tyler, I. 145 Ubuntu: broad sense of community 115, 116; communitarian framework 105; disabled people 114, 115; Mbiti’s assertion 104; philosophy of 104 Ucca Arawindha 6 UN Convention on the Rights of Persons with Disabilities (UNCRPD) 19, 120, 125, 161, 207, 210, 219–220, 222, 225–226, 228, 229, 250 United Nations Declaration of Human Rights 76 Valdivia, A. 60 Vallega, A. A. 53 Van Bruineseen, M. 157, 158

Index

291

Van der Merwe, W. L. 114, 115 Veracini, L. 78 Vergès, F. 142 Virdee, S. 124 von Krafft-Ebing, R. 73 von Unger, H. 7 Vulnerable Persons Resettlement Scheme 224

Wiebe, S. M. 255 Wilde, O. 74 Wilson, D. 39 Winters, J. R. 59 Wiredu, K. 107, 112 Wolfe, P. 69 World Bank 28 World Health Organization 156

Walsh, C. E. 238, 239 Washington, H. 38 Wechuli, Y. 5 White Australia Policy 75, 76

Yang, W. 45 Yeo, R. 7 Yoruba thought system 105, 106, 108 Young, R. J. C. 54