Disability, Media, and Representations: Other Bodies 9781138603011, 9780429469244

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This exciting, timely and readable text brings together established and emerging scholars to seek connections and, as importantly, reveal tensions between media and disability studies. The centrality of the body as a subject and object of analysis means that this book will be of interest to readers from a myriad of disciplines across the human and social sciences, arts and humanities. (Professor Dan Goodley, iHuman, University of Sheffield)

Disability, Media, and Representations

Bringing together scholars from around the world to research the intersection between media and disability, this edited collection aims to offer an interdisciplinary exploration and critique of print, broadcast and online representations of physical and mental impairments. Drawing on a wide range of case studies addressing how people can be ‘othered’ in contemporary media, the chapters focus on analyses of hateful discourses about disability on Reddit, news coverage of disability and education, media access of individuals with disabilities, the logic of memes and brain tumour on Twitter, celebrity and Down Syndrome on Instagram, disability in TV drama, the metaphor of disability for the nation as well as an autoethnography of treatment of breast cancer. Providing a much-needed global perspective, Disability, Media, and Representations examines the relationship between self-representation and representations in either reinforcing or debunking myths around disability, and ways in which academic discourse can be differently articulated to study the relationship between media and disability. This book will be of interest to students and researchers of disability studies and media studies as well as activists and readers engaged in debates on diversity, inclusivity and the media. Jacob Johanssen is Senior Lecturer in Communications, St. Mary’s University (London, UK). His research interests include audience research, social media, media and the body, psychoanalysis and the media, affect theory, as well as digital culture. Diana Garrisi is Lecturer in Media and Communication, Xi’an JiaotongLiverpool University (Suzhou, China). Her research interests include journalism, body image and the media, rhetorical theory, cultural history and science communication.

Routledge Research in Disability and Media Studies Katie Ellis, Curtin University

Disability and Digital Television Cultures Katie Ellis Disability, Media, and Representations Other Bodies Edited by Jacob Johanssen and Diana Garrisi

For more information about this series, please visit: https://www.routledge. com/Routledge-Research-in-Disability-and-Media-Studies/book-series/ RRDMS

Disability, Media, and Representations Other Bodies

Edited by Jacob Johanssen and Diana Garrisi

First published 2020 by Routledge 52 Vanderbilt Avenue, New York, NY 10017 and by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2020 selection and editorial matter, Jacob Johanssen and Diana Garrisi; individual chapters, the contributors The right of Jacob Johanssen and Diana Garrisi 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. Library of Congress Cataloging-in-Publication Data A catalog record has been requested for this book ISBN: 978-1-138-60301-1 (hbk) ISBN: 978-0-429-46924-4 (ebk) Typeset in Sabon by codeMantra

Contents

List of Tables List of Contributors 1

Introduction

ix xi 1

D I A N A G A R R I S I A N D J AC O B J O H A N S S E N

2

‘The Stuff of Nightmares’: Representations of Disability on the Online Bulletin Board Reddit

19

L E A H B U RC H

3

Madeline Stuart as Disability Advocate and Brand: Exploring the Affective Economies of Social Media

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M A R I A B E E C H R I S T E N S E N - S T RY N Ø A N D C A M I L L A B RU U N E R I K S E N

4

Losing Someone Like Us: Memetic Logics and Coping with Brain Tumours on Social Media

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S A M I R A R AJ A B I

5

Inscribing Comedy in the Breast Cancer Narrative. Disease, Autoethnography and Black Humour

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R AC H E L V E L O DY

6

Knowing North Korea through Photographs of Abled/ Disabled Bodies in Western News

94

M ICKY LEE

7

Disabled Heroines: Representations of Female Disability in Japanese Television Dramas A N N E -LISE M I T HOU T

114

viii Contents 8

The Education of Children with Disabilities in South African Online News Reports

135

E L I Z A B E T H WA LT O N A N D J U D I T H M c K E N Z I E

9

Mass Media Use by Individuals with Disabilities in Germany Compared to the United Kingdom

156

I N G O B O S S E A N D A N N E G R E T H A AG E

Index

179

Tables

7.1 8.1 9.1 9.2

Typology of characters Analysed articles from 31 January 2013 to 31 January 2018 Personal use of media at least once a week (data in %) Media equipment of persons with disabilities depending on living conditions (in %)

119 141 164 165

Contributors

Ingo Bosse  ([email protected]) worked as research assistant and professor at several German Universities. Currently he is leading the Training Centre for Inclusion of the District Government. His main fields of work are inclusive education, digital media for participation and inclusion, the media use of people with disabilities and e-inclusion. Leah Burch  ([email protected]) is a PhD candidate in the School of Sociology and Social Policy at the University of Leeds and a member of the Centre for Culture and Disability Studies at Liverpool Hope University. Her PhD research is focused upon the understanding and experience of disabilist hate crime, particularly in relation to the ‘everyday lives’ of disabled people. This research project also hopes to raise awareness of the strategies of resistance developed by disabled people to manage these experiences, and consider different approaches to engaging public awareness with this topic. Her previous research includes an analysis of online disablist hate speech within the context of austerity, and a critical discourse analysis of special educational needs policy. These works have been published in peerreviewed journals, including Disability & Society, and The Journal of Education Policy. Camilla Bruun Eriksen  ([email protected]) is an assistant professor in the Department for the Study of Culture at the University of Southern Denmark working within the fields of cultural studies, feminist studies and critical disability studies. As part of the research project Medicine Man (2019–2021) her research pays special attention to masculinities, medicalization, ageing and popular culture, and she has written on the intersections of fatness, embodiment, health, gender and sexuality. Maria Bee Christensen-Strynø ([email protected]) is a postdoctoral researcher in the Department of Communication and Arts at Roskilde University working within the fields of critical disability studies, visual culture studies, media studies and dialogical/collaborative

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Contributors communication studies. Her research focuses on processes of (online and visual) mediation and representation, with a particular interest in the ways in which media shape ongoing becomings of disabled embodiment.

Diana Garrisi ([email protected]) is lecturer in media and communication at Xi’an Jiaotong-Liverpool University (Suzhou, China). Her research interests include journalism, body image and the media, rhetorical theory, cultural history and science communication. Annegret Haage ([email protected]) is a journalist; since 2013 she has been working as a research assistant at the Faculty of Rehabilitation Sciences, Department of Motor Development in Rehabilitation and Education. Her main fields of work are the potentials of digital media for participation and inclusion of people with disabilities, the media use of people with disabilities and inclusive media education. Micky Lee ([email protected]) is an associate professor of media studies at Suffolk University, Boston. She has published in the areas of feminist political economy; information, technologies, and finance. Her latest books are Bubbles and Machines: Gender, Information, and Financial Crises (University of Westminster Press) and Alphabet: The Becoming of Google (Routledge). Judith McKenzie ([email protected]) is an Associate Professor in the Division of Disability Studies in the Department of Health and Rehabilitation Sciences at the University of Cape Town. She is also the principal investigator for the Teacher Empowerment for Disability Inclusion (TEDI) project which develops and evaluates short courses and massive open online courses (MOOCs) for inclusive teacher education. Anne-Lise Mithout  ([email protected]) is an associate professor in Japanese studies at Paris-Diderot University. Her research focuses on the social treatment of disability and the lived experiences of people with disabilities in Japanese society. She investigates especially the fields of education, employment and the Disability Right movement, with a focus on gendered experiences. Jacob Johanssen ([email protected]) is a Senior Lecturer in Communications, St. Mary’s University (London, UK). His research interests include audience research, social media, media and the body, psychoanalysis and the media, affect theory, as well as digital culture. Samira Rajabi  ([email protected]), PhD, is the Director of Technology Influenced Pedagogy and an Instructor at the University

Contributors

xiii

of Colorado. Prior to that, Rajabi was a postdoctoral fellow at the Center for Advanced Research in Global Communication at the University of Pennsylvania’s Annenberg School of Communication in Philadelphia, Pennsylvania. Rajabi’s research focuses on trauma and digital media. Rachel Velody ([email protected]) was formerly a course leader on the Fashion Media degree programme, London College of Fashion. Her areas of expertise concern screen studies and fashioned identities. Awarded a 3-year doctoral stipend by the University of Bristol in 2018, Rachel currently explores the fashioning of the female detective in contemporary British television crime drama. Elizabeth Walton ([email protected]) is an Associate Professor in the School of Education at the University of Nottingham, UK. She is a member of the forum of the UNESCO chair in Teacher Education for Diversity and Development and a visiting Associate Professor at the Wits School of Education in Johannesburg, South Africa.

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Introduction Diana Garrisi and Jacob Johanssen

‘What can a body do?’, French philosopher Gilles Deleuze asked by quoting Baruch Spinoza, the original thinker who posed the question back in the seventeenth century (Deleuze 1990; Spinoza 2000). How is it made to do certain things, move in a direction, moved by other forces? How is it shown as doing? How is it shown what it can and cannot do? What spaces, virtual and material, is it allowed to occupy and in what ways? How do bodies feel and articulate feelings and emotions about themselves? How are they made to feel by others through digital means? Above all, how are bodies ‘othered,’ made to be and feel as other? Those questions and many more are at the heart of this edited volume. The contributors seek to analyse how bodies are presented as strange, shameful, wrong, impaired, wounded, scarred, disabled, lacking, different or ‘other’ in the media. This chapter introduces the edited collection by highlighting key themes, theoretical frameworks and methodological approaches pertaining to the intersection between Disability and Media Studies. The development of new media and the increased engagement with selfrepresentational practices have potentially multiplied the ways disability can be mediated, creating the basis for new research questions. This introduction provides an overview of the book’s themes and summaries of the different chapters. It historically situates the book’s chapters in relation to existing works exploring the question of how bodies are made to be and feel as ‘other’ in contemporary media. It explores how media inform ways to conceptualize the self and human relations. It ends by arguing that research on those topics needs to broaden its frameworks in order to move beyond an exclusive focus on the representational. The edited book aims to offer an interdisciplinary exploration and critique of media representations of physical and mental impairments. The fast-changing global contemporary media landscape can provide an ideal site to examine the media portrayal of diversity and evaluate whether this is informing new ways to conceptualise the self and human relations. This volume approaches the study of bodies and the media through the lenses of disability studies. Interdisciplinary in nature, disability

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studies draws on disciplines and theoretical frameworks such as philosophy, sociology, history, queer theory, body studies, affect theories and other approaches. In a sense, the field of disability studies came into existence as a result of a rejection on the part of many scholars regarding the mistreatment of disabled people in society. Many scholars who wrote foundational texts of disability studies wanted to ‘shift the focus from “what’s wrong with people with disabilities,” to “the social forces that determine people with disabilities’ chances in life”’ (Bogdan and Biklen 2013, 1). Disability studies scholars are still working on moving away from the perception of disabled people as subjects who suffer from medical conditions. Instead, disabled people are recognized as human beings who are situated within particular social and cultural structures, knowledge and policies that enable but also disable their subjectivities. Emerging from the disability rights movement which started in the United States in the 1960s, disability studies is both an academic field of inquiry and an area of political activity seeking to give disabled people a voice. When disability studies (from its inception to the present) challenges the univocality of medical or rehabilitative models, what is at work in such challenges is a counter-eugenic will to not eliminate but rather revalue that which is freakish, deformed, twisted, crippled, or in any way atypical McRuer (2012, 357, cited in Goodley 2014, 14) Many disability studies scholars have also shown how disabled individuals affectively experience the world differently than individuals who are able-bodied. As David T. Mitchell, Susan Antebi and Sharon L. Snyder put it: disability has ‘its own laws and potentialities of insight’ (2019, ix). Disability studies is, as Benjamin Fraser (2016, 2) defines it: a disciplinary formation whose sustained political force requires constant methodological innovation and political commitment if it is to respond to struggles that appear, morph and reappear in specific places and at specific times – always with specific human consequences. It is the dynamic qualities of disability studies, as an evolving and shifting field of enquiry, that this volume hopes to support. Disability studies is not the disciplinary home of the editors of this volume, but has particular significance to our background in media studies. Our own interdisciplinary interest is reflected by the authors of the chapters in this volume. Different backgrounds and approaches can contribute to debate and conversations between disability studies, media studies and other areas (Ellcessor and Kirkpatrick 2017). Media concepts and methods

Introduction 3 provide disability researchers with tools to analyse texts, technologies and cultures; disability theories emphasize the central meaning of disability and its broader social implications in media texts (Ellcessor and Kirkpatrick 2017, 16–17). The different ways in which we think about disability in real life as well as in the arts, media and entertainment can bring benefit and understanding not only to media and disability scholars but also to researchers working across the fields of education, social services, science, health and medicine (Hadley and McDonald 2019, 1). Media and disability studies, both characterized by political aspirations, can work in a mutually constitutive relationship (Ellis and Goggin 2015; Ellcessor and Kirkpatrick 2017). Taking a critical view on representations of bodies as a starting point, this volume seeks to discuss contemporary practices and discourses about bodies and their relationships with the media. Scrutinizing global media representations of disability may provide an opportunity for re-imagining and creating media that challenge the status quo and advance towards more liberating politics (Schatz and George 2018). The chapters in this volume frame bodies in terms of representation and representativeness from an intersectional perspective in order to explore how people can be ‘othered’ in contemporary media. To that end, the book includes chapters on hateful discourses about disability on social media as a means of disposing of the anxieties of non-disabled people in a time of financial instability; news coverage of disability in South Africa; media access of individuals with disabilities in Germany; an analysis of the memetic logics of brain tumour discussions on Twitter; celebrity and Down syndrome on Instagram; the representation of disability in Japanese drama; North Korea and the metaphor of disability for the nation and North Korean defectors; as well as an autoethnography of treatment of breast cancer. All authors critically discuss the relationship between self-representation and representations in either reinforcing or debunking myths around disability and othering. They also go beyond issues of representation by contextualizing it within the cultural, political and commercial aspects that media are situated in. Disability studies as a field has a strong institutional base in the United States and the United Kingdom. This is also reflected in many publications that often draw on examples from the English-speaking world. As a number of scholars have argued, disability is often the direct or indirect result of imperialism and colonialism (Ghai 2010; Puar 2017; Nguyen 2018). The epistemic whiteness of disability studies has been critiqued by a number of scholars (Snyder and Mitchell 2006; Barker and Murray 2010; Ghai 2010; Meekosha 2011; McRuer 2018; Nguyen 2018). As Fraser notes, ‘Anglophone publications, in my estimation, have shown far too little documented scholarly interest in disability in non-Anglophone contexts’ (Fraser 2016, 2). This book seeks to make a

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contribution to the ongoing efforts to de-Westernize disability studies in order to expand analyses and theoretical frameworks beyond the West. Such perspectives argue not only to shift the analytical focus to non-Western places, such as the global South, but also to draw on non-Western concepts and scholarship when it comes to theorizing disability itself (Nguyen 2018). Such positions, like Anglophone disability studies, place an emphasis on the context in which disability occurs. As Xuan Thuy Nguyen (2018, 8) illustrates: My experience is intersectional and contextual: my middle-class, ethnic majority, (dis)able-bodied social location was redefined with my immigration to Canada as a woman of color in academia, where my experience with inclusion and exclusion in transnational social and political spaces has reminded me to critically interrogate my intellectual positioning within disability studies, recognizing that it has largely emerged from the global North. In that sense, disability is situated between and across geographical, cultural and categorical contexts. Building on the existent literature, following Jasbir K. Puar (2017) and Dan Goodley (2014), we wish to broaden the analytic scope of disability as a category. This book aims to offer an interdisciplinary exploration and critique of global media representations of physical and mental impairments including discussions of the representational, the symbolic and discursive – but also going beyond such prisms and presenting and questioning the ways in which academic discourse can be differently articulated to research the intersection between disability and the media.

Media and Disability Studies: A Brief History In the Anglo-American world, interdisciplinary methodologies within the humanities and social sciences began to emerge in the 1990s. Colin Barnes (1992) wrote one of the first studies on the stereotypical depictions of disabled people in the media noting that the discrimination of people with disability went hand in hand with heterosexism, racism and sexism, to name a few. The same year Guy Cumberbatch and Negrine Ralph (1992) presented the results of a comparative quantitative study measuring the frequency within which people with disabilities appeared on television in the United Kingdom and United States. The scrutiny of stereotypes in the representation of disability continued with Perspectives of Disability in Broadcasting (BSC 1995) published by the Broadcasting Standards Service in coincidence of the UK Disability Discrimination Act 1995. It was clear that addressing questions of disability representations in the media could be turned into political action. This focus fosters the

Introduction 5 debate of social participation and inclusivity on equal basis, and has the potential to popularize the notion of tolerance between each other in society. But it was, and still is, a long way to go, for misleading assumptions about people with disabilities are deep seated within our culture and endlessly replicated through the media (Barnes 1992). For example, Ann Pointon and Chris Davies (1997) pointed to a connection between the use of repetitive narrative tropes in framing disability in film and television and the lack of access to employment and training in the arts for people with disabilities who, with their presence, could influence the programmes’ content and make it more representative. More recently, it has been noted that social media platforms may increase employment and communication opportunities for people with disabilities, yet parts of the platforms often remain inaccessible from a technical point of view (Ellis and Kent 2011, 2017). This can be seen on Twitter, for example, where long threads are sometimes copied over to more accessible formats so that they can be accessed with a screen reader application. Facilitating access to information is fundamental in enabling citizens to take part in civil society (Feintuck and Varney 2006). The liberating potentials of digital media platforms that were often highlighted by scholars in the early 2000s were not only too idealistic, but they were also largely modelled on able-bodied individuals rather than on the diversity of whole populations. Gerard Goggin and Cristopher Newell (2003) explored technology as a site in which disability is constructed and questioned in relation to whether the new values reflected in digital media were inclusive of people with disabilities. Goggin and Newell framed the rights of people with disabilities within a global perspective, an approach which would become, at both academic and institutional level, a recurrent way to address disability-related issues. The Convention on the Rights of Persons with Disabilities, adopted in 2006, was then seen as a major shift in the way disability had been dealt with at international level; this international treaty was viewed as an instrument to address major cultural changes in the world’s perception of people with disabilities (Un.org 2006). In the process of negotiating the terms of the treaty, people with disabilities from all around the world had gathered together and for the first time ‘had a platform and a target for joint advocacy’ (Bell 2014). As Katie Ellis and Mike Kent (2011, 2) pointed out, technological advancement does not occur in an ideological vacuum: ‘the web 2.0 has been developed in and by the same social world that routinely disables people with disability.’ The inaccessibility of the offline world has been duplicated online, especially in social networking sites (Ellis and Kent 2017). As such, values, desires and ideals of marginalized groups are underrepresented and under expressed, as biases privileging dominant cultural groups are embedded in the organization and management of media (Alper 2017). More recently, Katie Ellis (2019),

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proceeding from a media and cultural studies approach, examined the way people with disabilities access and watch digital TV. Taking Australia as a case study, Ellis’s book offers an opportunity for an exploration of the ‘role of the state and legislation to advance critical disability analysis of television’ (ibid.) Anna Hickey-Moody and Vicki Crowley (2012), by studying disability through the lenses of affect theories, observe that media can be a form of cultural pedagogy capable of provoking, confronting and redefining knowledge and practice. According to the authors, affect, intended as an expression of the embodied manifestation of learning, can chart the micro-political relations preliminary to social change (ibid.). Eliza Varney (2013) adopted a comparative approach to explore regulatory frameworks for information and communication technologies in four different contexts: Canada, European Union, the United Kingdom and the United States. Her work takes an advocacy stance suggesting that policy makers have to design measures capable of narrowing the divide between people who can effectively have access to information and those who cannot in times of fast technological developments (Dobransky and Hargittai 2006; Varney 2013). The failure to addressing this gap would result in consequence contrary to democratic principles (Feintuck 2003; Varney 2013), and values of civic engagement and cultural inclusions (Ellcessor 2016).

Othering Bodies The practice of ‘othering’ is not restricted to disability. The idea of the Other is central to various forms of prejudice and exclusion (YoungBruehl 1996; Garland-Thompson 1997). It also figures as a social mechanism in the construction of identities, groups and borders in society. On a basic level, identity formation is dependent on how individuals perceive themselves in relation to others and how difference and similarity are used and experienced by people to construct identities. Identity formation and group belonging, and the self-other dynamics that go with them, are thus not inherently negative or problematic. Human beings make use of symbolic categories and discourses that operate through self-other distinctions and thereby always mobilize exclusions and boundaries (Giddens 1991). However, particular categories and practices can be used to exclude, attack or annihilate others. As Simone de Beauvoir (1974, xixi–x) wrote in The Second Sex: Otherness is a fundamental category of human thought. Thus it is that no group ever sets itself up as One without at once setting up the Other against itself. While having roots in a variety of discourses and theoretical frameworks, the specific concept of ‘othering’ was first developed by the postcolonial

Introduction 7 thinker and theorist Gayatri Chakravorty Spivak (1985). In her archival analysis of the colonialist relations, Spivak argues that othering works as a practice of subordination where the other is made aware of who holds the power. Othering, as a form of prejudice, is linked to power and functions as a mechanism through which certain groups or individuals seek to cement their power at the expense of others. As the various contributions to this volume re-confirm, othering can occur specifically in relation to categories like class, gender, sexual orientation, ethnicity and disability. Othering often occurs in a combination of those categories which are mobilized for ideological purposes. For instance, this occurs when someone who is blind and from the lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) community is othered because of their sexual orientation and disability. While this volume puts disabilities and bodily differences centre stage in relation to othering, it is important to highlight that disability should not be seen in isolation or as being part of a sort of hierarchy of categories. In that sense, othering often marks the consequences of the processes of racism, sexism or ableism. These processes are amplified through the media today.

Disability, Representation and the Media Representation in the media is an enduring sphere of strenuous efforts and meaning (Alexander et al. 2015). The advent of digital media has underlined the importance of the visual and our curiosity in representations of the body to form opinions about ourselves and others. Media portrayals of bodies can affect our lives because media are one of the primary agents of socialization (Moore and Kosut 2010). Stereotypical representations in the media can strengthen stigmatizing views of disability impacting on one’s perception of the self and one’s relation with others in a society (Worrell 2018). A critical analysis of representations of disability is therefore important as a means of change (Bolt 2014). The bodies that we encounter in newspapers, on television and in our social media feeds are often made to appear perfect in order to conform to racialized, ableist and heteronormative ideals of what it means to be beautiful and normal in contemporary capitalist societies. Disability studies scholar Dan Goodley (2014, 4) writes: Our obsessions with our own bodies and biology, fuelled by institutional, expert, scientific discourse and the fascinations of popular culture trains our thoughts on to our individual selves, our minds and our bodies to check how we match up to a normative model of humanity. The digital media landscape is posing new challenges to the study of body representation. The Internet and social media, in particular, have led to an increased representation and engagement with the body

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through practices such as selfies, webcamming, blogging, vlogging and other forms of engagement. While digital media may contribute to the self-empowerment of excluded and silenced bodies, they may equally open up spaces of discrimination, threats, hatred, trolling and silencing online. It is perhaps not surprising that overall the portrayal of disabilities in different media is still problematic. Paul Darke called it ‘clichéd, stereotyped and archetypical’ (2003, 100). While mainstream representations of bodies in popular culture do not stop ‘people with disabilities’ from gaining ‘pleasure from popular culture’ (Ellis 2015, 6), more needs to be done to represent their full lived experiences instead of being anchored in positive or negative stereotypes (Ellis 2015). In their focus upon literary representation, David Mitchell and Sharon Snyder (2000) argue that disability can become an essential part of narratives. It is a ‘narrative prosthesis,’ an essential component in order to drive the plot in a film forward, for example. They have argued that ‘disability pervades literary narrative, first, as a stock feature of characterization and, second, as an opportunistic metaphorical device’ (Mitchell and Snyder 2000, 222). This does not mean, however, that such usages of disability as a stylistic device should always be regarded as negative. On the contrary, disability can serve to disrupt established ideals of normalcy and beauty for example. However, this happens all too rarely (Ellis 2015). Some forms of representations align with the idea of the ‘supercrip’ which, even though positive, portray people with disabilities as superhuman who everyone should be inspired by (Clogston 1990; Zhang and Haller 2013). Many chapters in this volume implicitly discuss the relationship between ableism and disability. When non-disabled individuals talk about disabilities, such discourses (and ways of representation) are often ableist, because they imagine what it might be like to be disabled (Titchkosky 2016). Representation is essentially an epistemological notion; it is always derivative from a priori knowledge and by its own nature is liable to refinement and falsification; it shows ‘how’ rather than ‘what’ we know (Daston 2014). As such, Jeffrey Preston (2016) argued that media representations of disability are not about disabled people but about the fears and anxieties of disablement, as imagined by non-disabled people. Preston says: ‘They do not present us with the lived experience of disability but rather are the story of the normate, an anxious subject revolted by their own vulnerability to the point that they hide from it’ (2016, 142). This imagination has been exacerbated within the current climate of financial instability. Now widely documented, the 2008 global financial crisis and subsequent benefit cuts to welfare policies have had a substantial impact upon disabled people in the West (Goodley and Runswick-Cole 2015). Austerity – government measures to reduce spending and deficit – has been characterized as a focus on efficiency and pragmatism in order to

Introduction 9 overcome the economic climate after the 2008 financial crisis. These developments are significant in two ways: they targeted people on social benefits in particular (disabled people among them), and they are implicitly and explicitly echoed in neoliberal media discourses about self-responsibility, self-care and empowerment of individuals (Jensen 2013). In addition, Clare Barker and Stuart Murray, co-editors of The Cambridge Companion to Literature and Disability (2017), note the importance of reflecting on representation and disability in the media, in fiction, television, film, political discourse and public policy: ‘In a time when the logic of austerity demands endless efficiency, and with Brexit threatening to reshape everything from local economies to human rights legislation’ (The Guardian 13 January 2018, 13). Elizabeth Ellcessor and Bill Kirkpatrick (2017) have argued that media studies and disability studies should be combined and move beyond textual or content analyses of representations of disability by taking aspects of production and consumption as well as ideologies and categories related to disability into account (such as gender, sexuality, class or ethnicity). Such a focus should include e.g. how disabled people use and produce media and how media industries, as well as content and technologies, can be inherently disabling (Ellcessor and Kirkpatrick 2017; see also Ellis and Goggin 2015; Ellcessor 2016). This volume similarly follows a broadening of disability beyond the textual or audio-visual, by focusing on disability in relation to practices, categories, geographical contexts and bodily abilities as well as representations.

Broadening the Concepts of Disability and Representation While this volume uses issues around ‘representation’ as a starting point, the representational is also questioned and problematized by the authors. While representation may be a longstanding topic within media and disability studies, this volume aims to go beyond the symbolic or cultural interpretations of particular representational practices. Disability has often been tackled from binary dimensions such as medical model/social model; old media/new media; theory/practice; ability/disability. A number of scholars have started to break down such binaries (McRuer 2006; Campbell 2009; Goodley 2014). Such perspectives have been ushered in particularly by new materialism(s) and object oriented ontology. New materialism(s) and object oriented ontology have been instrumental in reconfiguring and redefining the relationship between, broadly speaking, subjects and objects. As part of a wider ‘nonhuman turn’ (Grusin 2015), questions of the agentic ability of things, objects and matter are foregrounded by thinkers such as Jane Bennett, Rosi Braidotti, Bruno Latour, Karen Barad and many others. The rational, reflexive human subject as an individual who has taken precedence above other forms

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in scholarship is critiqued and decentred by such thinkers. This is done in order to open up perspectives which specifically include disciplines beyond the humanities and social sciences such as biology, neuroscience and other branches of knowledge. Lisa Blackman (2019) notes that such a shift ‘relates to the identification of common ontologies emerging across the sciences and humanities, which emphasize the complex, processual, indeterminate, contingent, non-linear, relational nature of phenomena constantly open to effects from contiguous processes.’ (Blackman 2019, xviii). Such perspectives have also been recently taken up in disability studies (Goodley 2014; Puar 2017; Mitchell, Antebi and Snyder 2019). In her book The Right to Maim (2017), Jasbir K. Puar broadens disability to encompass more than the traditional sense of the term. Coupling ‘disability’ with debility and capacities for undoing and unmaking bodies, Puar focuses on the biopolitics of making and unmaking bodies through forms of capacitation. Across the world, bodies are subject to violent biopolitical forces and marked along racial, sexual, religious and physical/psychological abilities. Biopolitics, for her, designates a ‘capacitation machine’ (xviii) that refers to processes of situating bodies in a transitory state between being and becoming. Violent mechanisms, such as war, torture and oppression, are thus specifically designed to debilitate bodies, rather than straight forwardly disabling them. Puar is adamant that the concept of disability needs to be brought out of the white (and often male) conceptual home of disability studies in order to be opened up to intersectional analyses. For Puar, bodies that are not disabled in the traditional sense, such as black bodies subject to police brutality in the United States, need to be included in thoughts about and analyses of othered bodies. Such bodies are all, perhaps to varying degrees, ‘sustained in a perpetual state of debilitation’ (ibid., xiv). In focusing on debility, a processual prism is sharpened that renders disability fundamental to, but also not enough in, contributing to the understanding of violence today. ‘Disability is not a fixed state or attribute but exists in relation to assemblages of capacity and debility, modulated across historical time, geopolitical space, institutional mandates, and discursive regimes’ (ibid., xiv). Treating disability as a dynamic, Puar’s goal is to think through how disability works as a biopolitical mechanism through which individuals and entire populations are at greater risk of becoming disabled than others. Disability marks bodies, or parts of bodies, which are either at risk of becoming (marginalized bodies of ethnic minorities for example) or always already marked by being of less or no potential. ‘[S]ome are living the disability that does not get codified or recognized as such, not only as a true site of insufficiency but as a mark or remainder or reminder of that which is already constituted as insufficient’ (ibid., 12), as Puar notes. For her, drawing on Foucault, the body is ‘an ability-machine’ (ibid., 14) subsumed under regimes of capital. Such formulations open up disability towards affect studies – which

Introduction 11 has been adopted by scholars in disability studies (Hickey-Moody and Crowley 2010; Goodley, Liddiard and Runswick-Cole 2018; Reddington 2019) – a field where bodies are seen as sites of becoming and potential, ruptured along non-human entities. The question for Puar, which is also of central relevance for this edited volume, is subsequently not what disability is, but what it does. What it does to bodies, as well as what bodies do to themselves and others. This emphasis and shifting from disability as a fixed term towards ability, potential, capacity, as well as rupture, undoing and debility opens up new alliances and assemblages in order to consider how bodies are subjected to physical and symbolic violence today. This does not mean that more positive and emancipatory perspectives on disability are closed off by such a position (Barnes 2016). Disabilities studies scholar Dan Goodley has also put forward a conceptualization of disability which specifically takes account of abilities rather than focusing on disability. What he terms ‘dis/ability’ (Goodley 2014) represents an effort to argue for the mutuality and constitutiveness of disability and ability. Goodley notes that in recent years, disability studies has moved towards critical disability studies by embracing frameworks and ideas from other disciplines. There has also been a move towards ableist studies (Campbell 2009, 2012; Wolbring 2007, 2012) where scholars analyse how ableist practices and discourses are perpetrated by individuals who are able-bodied. ‘Ableism is the system from which forms of disablism, hetero/sexism and racism emanate and has in mind a “species-typical” human being’ (2014, 22), as Goodley notes. As a particular form of othering, ableism constructs a hierarchy of bodies based on arbitrary (albeit ideologically rationalized) characteristics that favour certain bodies over others. Ableism creates a dichotomy of ‘normal – other’ within which we all become entangled and caught up within. As Goodley suggests, ‘Everyone across the dis/ability divide is caught up in the processes and fantasies of ableism. We – the non/disabled, wo/ man, black/white, gay/straight, poor/rich – are all knotted up in the process of ableism’ (ibid., 26, italics in original). Goodley argues that the notion of dis/ability must be intersectional and incorporate materialist, psychoanalytic, poststructural and postconventionalist perspectives (ibid., 52–66). Such a notion draws on humanities scholarship from a variety of disciplines in grasping how abilities and disabilities are connected and mutually related (see also Goodley et al. 2019 for a recently repeated appeal for disability studies to open itself up). ‘Disability asks of ability: Is that all you’ve got? Are you really that superficial in what you consider to be worthy of merit?’ (ibid., 156). In that sense, dis/ability needs to account for, or perhaps acknowledge, how bodies are mis/ represented in general today and this particularly applies to the media. This edited volume is sympathetic towards such perspectives by discussing disability in its broadest sense. Rather than arguing for post- or

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non-representational approaches to disability and the media, the representational and its non-representational surroundings should both be considered when it comes to disability, othering and the media.

Chapter Summaries The volume opens with the chapter ‘The Stuff of Nightmares’: Representations of Disability on the Online Bulletin Board Reddit by Leah Burch who explains how collective anxieties of non-disabled people, projected onto disabled people, create and perpetuate harmful representations online. The chapter focuses on the extent to which the American social media platform Reddit spreads and reinforces discriminatory attitudes towards disability. Euthanasia and eugenics are justified by users on Reddit in light of economic crises and austerity that have led to welfare cuts. Disabled people are framed as being a burden on the welfare state and set up against neoliberal ideas of self-sufficiency and economic productivity. Discourses of exclusion portraying people with disabilities as an economic burden misleadingly emphasize disability as an unworthy and unwanted state of being. Burch sheds light on the extent to which the category of the human is often defined according to criteria of economic productivity in the context of public online forums. Maria Bee Christensen-Strynø and Camilla Bruun Eriksen continue the discussion regarding online communication and disability by exploring the convergence between commodification and campaigning on social media. The chapter Madeline Stuart as Disability Advocate and Brand: Exploring the Affective Economies of Social Media explains how American disability advocate Madeline Stuart reframed her Down syndrome within a story of weight loss, sport and fitness. The focus on fitness pushes Down syndrome to the margins and enables Stuart to present herself as someone who can take control of her body by losing weight. The two authors of the chapter, drawing on Sara Ahmed’s notion of affective economies (Ahmed 2004, 2010), argue that Stuart’s case of online self-commodification exemplifies ways in which a disability identity can be transformed into a valuable personal brand and asset, by aligning it with mainstream narratives of ideal body images, such as slimness. In this way, disability acquires emotional currency which is filled with meaning and (surplus) value through affective circulation on social media. Such forms of representation nonetheless enable agency and power which challenge traditional ableist narratives, as they have been researched by Burch in this volume, for example. Re-definition of identity through interactive spaces is also the focus of Samira Rajabi’s chapter Losing Someone Like Us: Memetic Logics and Coping with Brain Tumours on Social Media. In this chapter, Rajabi considers discussions in social media communities on Twitter about brain tumour and the right to die. Taking as a case study the story of Brittany

Introduction 13 Maynard, an American woman with terminal brain cancer who decided to end her life, Rajabi explains the way the memetic logics of the Internet, based on virality, offer opportunities to simultaneously create, destroy and re-create meanings surrounding suffering. Bringing together work on trauma and disability studies with scholarship on digital technologies, Rajabi reads Twitter as a digital channel for micro-political gestures capable of underlying the fragile nature of our assumptions about what it means to live and to die with brain tumour and challenge the idea that ‘anything aside from a cure constitutes a personal failure.’ She broadens the notion of the meme, which is more commonly associated with jokes, light-heartedness, or ridicule, by arguing that it constitutes a sense of playfulness through which individuals can share lived experiences and subvert discourses of othering such as disability, sickness and victimization. With her autobiographical account of breast cancer Inscribing Comedy in the Breast Cancer Narrative. Disease, Autoethnography and Black Humour, Rachel Velody challenges academic literary conventions and questions the validity of the signifier of ‘objectivity’ to mediate the notion of disability. Using comedic autoethnography, Velody takes us through a journey of discovery of not only what it means but also what it feels to live with breast cancer. Through a range of lexical, syntactic and semantic possibilities Velody shows the fallacies surrounding cancer and debunks the myth of disability as an out of ordinary experience. In putting her experiences into words, Velody aims to affect the reader in visceral terms. Ultimately, her chapter leaves us with the question of whether both media and academia are drawing on the full range of expressive possibilities to write or visually represent disability. The next two chapters place their geographical focus on Asia. Micky Lee’s Knowing North Korea through Photographs of Abled/Disabled Bodies in Western News evokes disability in order to analyse the visual and textual presentation of North Korean defectors and male and female soldiers. Lee examines how images of the body serve as sites where different meanings are laid out and contested. Images of North Korean bodies may provide a platform used by the government to reinforce its ideology and by the Western press to contradict it and provide documentary evidence for its failure. The body, particularly when it is wounded, malnourished or otherwise ‘different,’ becomes emblematic of the country’s wellbeing and political economic relations. In official representations, for example military parades, the body comes to figure as embodying the regime as powerful and healthy, whereas disabled bodies are stigmatized and seen as weak. The bodies, then, come to stand in for the nation that is seen as both disabling of its citizens and disabled because of its political economic system. In Lee’s chapter disability serves an epistemological function as it becomes the lens through which to gain knowledge about a country whose sources of information are heavily monitored by a system of censorship.

14 Diana Garrisi and Jacob Johanssen Anne-Lise Mithout’s chapter Disabled Heroines: Representations of Female Disability in Japanese Television Dramas explores ideas of inclusion and social participation in four contemporary Japanese dramas focusing on the representation of female characters with disability. The author shows that contemporary fictional TV portrayals increasingly depict women with disabilities as involved in sexual and romantic relationships breaking taboos surrounding disabled people’s sexuality and reproduction. While such forms of representation may challenge traditional taboos around disability in Japan, they are nonetheless ambivalent, as Mithout argues. For instance, some of the narratives still emphasize a disabled community that is segregated from the rest of society (e.g. through special schools or workshops), rather than advocating a fully inclusive society. The female protagonists are also portrayed by well-known actresses, who are shown as young and cute rather than ordinary in order to attract audiences. Mithout argues that in these shows disability is used as a symbol of the female condition in Japan, the social obstacles faced by women in general and the rules that the society still imposes upon them. With the chapter The Education of Children with Disabilities in South African Online News Reports by Elizabeth Walton and Judith McKenzie, we move on to journalism in South Africa and its role in addressing the provision of education for children with disabilities. While the news reports pick up on the government’s failure in providing inclusive education for children with disabilities, they also reinforce existing stereotypes about disabilities. The chapter lingers on some of the common paradoxes of journalistic exposé: the press gives publicity to the failures of the government but, at the same time, through representative tropes, reinforces stereotypes that are often at the basis of the systemic neglect of people with disabilities. Walton and McKenzie argue that the articles present a simplistic, medicalized approach that portrays the children in terms of individual tragedy. Through discourse analysis, it is shown that such portrayals evoke shock and pity in audiences by portraying children as deficient and helpless. The two authors find in the ahistoricity of the news articles a significant cause for misinformation, as the news portrayals fail to take into account the country’s apartheid past and its legacy on contemporary government decisions regarding education for people with disabilities. Ingo Bosse and Annegret Haage carry on the discussion about media, disability and human rights by exploring questions of access to media. In Mass Media Use by Individuals with Disabilities in Germany Compared to the United Kingdom, the two authors conduct a comparative analysis between their originally produced research in Germany with Ofcom’s report on individuals with disabilities’ access to media in the United Kingdom (Ofcom 2015). While there may be specific regulations and goals in both countries with regard to enabling access to different media, satisfactory levels of access are unachieved. Bosse and Haage’s

Introduction 15 mixed methods study features expert interviews, quantitative surveys and qualitative focus group discussions. Individuals with visual, hearing, mobility and learning impairments were recruited for the research project. In conjunction with the British study, the authors show that barriers in media access are still significant and this is in stark contrast with the wealth of possibilities that today technologies could potentially offer to facilitate inclusivity.

References Ahmed, Sara. 2004. The Cultural Politics of Emotion. Edinburg: Edinburgh University Press. Ahmed, Sara. 2010. The Promise of Happiness. Ann Arbor, MI: Duke University Press. Alexander, Jenny et al. 2015. “Media, Margins and Popular Culture.” In Media, Margins and Popular Culture, edited by Einar Thorsen, Heather Savigny, Jenny Alexander, and Daniel Jackson. Basingstoke: Palgrave Macmillan. Alper, Meryl. 2017. Giving Voice: Mobile Communication, Disability, and Inequality. Cambridge, MA: The MIT Press. Barker, Clare and Murray, Stuart. 2010. “Disabling Postcolonialism: Global Disability Cultures and Democratic Criticism.” Journal of Literary & Cultural Disability Studies, 4 (3): 219–236. Barker, Clare and Murray, Stuart. 2017. The Cambridge Companion to Literature and Disability. Cambridge: Cambridge University Press. Barnes, Colin. 1992. Disabling Imagery & the Media: An Exploration of the Principles for Media Representations of Disabled People. Halifax: British Council of Organisations of Disabled People and Ryburn Publishing. Barnes, Elizabeth. 2016. The Minority Body. A Theory of Disability. Oxford: Oxford University Press. Bell, Beverly. 2014. The Global Disability Rights Movement: Winning Power, Participation, and Access. Huffington Post, 5 October. Available at: www. huffpost.com/entry/the-global-disability-rig_b_5651235 Blackman, Lisa. 2019. Haunted Data: Affect, Transmedia, Weird Science. London: Bloomsbury. Bogdan, Robert and Biklen, Douglas. 2013. “Handicapism.” In Foundations of Disability Studies, edited by M. Wappett and K. Arndt, 1–16. Basingstoke: Palgrave Macmillan. Bolt, David. 2014. “Introduction.” In Changing Social Attitudes Toward Disability: Perspectives from Historical, Cultural, and Educational Studies edited by David Bolt, 1–11. d London: Routledge. Broadcasting Standards Council (BSC). 1995. Perspectives of Disability in Broadcasting, BSC Working Paper no. 11. London: London: Broadcasting Standards Council. Campbell, Fiona Kumari. 2009. Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan. Campbell, Fiona Kumari. 2012. “Stalking Ableism: Using Disability to expose ‘abled’ Narcissism.” In Disability and Social Theory: New Developments and Directions, edited by Dan Goodley, Bill Hughes, and Lennard Davis, 212–230. Basingstoke: Palgrave Macmillan.

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Clogston, John S. 1990. Disability Coverage in Sixteen Newspapers. Louisville, KY: Advocado Press. Cumberbatch, Guy and Negrine, Ralph. 1992. Images of Disability on Television. London: Routledge. Darke, Paul A. 2003. “The Changing Face of Representations of Disability in the Media.” In Disabling Barriers, Enabling Environments, edited by John Swain, Sally French, Colin Barnes, and Carol Thomas. London: Sage. Daston, Lorraine. 2014. “Beyond Representation.” In Representation in Scientific Practice Revisited, edited by Catelijne Coopmans, Janet Vertesi, Michael Lynch, and Steve Woolgar, 319–322. Cambridge, MA: The MIT Press. de Beauvoir, Simone. 1974. The Second Sex. New York: Vintage Books. Deleuze, Gilles. 1990. Expressionism in Philosophy: Spinoza. New York: Zone Books Dobransky, K. and Hargittai, E. 2006. “The Disability Divide in Internet Access and Use.” Information, Communication and Society, 9 (3): 314–334. Ellcessor, Elizabeth. 2016. Restricted Access: Media, Disability, and the Politics of Participation. New York: New York University Press. Ellcessor, Elizabeth and Kirkpatrick, Bill, eds. 2017. “Introduction.” In Disability Media Studies, 1–28. New York: New York University Press. Ellis, Katie. 2015. Disability and Popular Culture. Focusing Passion, Creating Community and Expressing Defiance. Farnham: Ashgate. Ellis, Katie. 2019. Disability and Digital Television Cultures: Representation, Access, and Reception. London: Routledge. Ellis, Katie and Goggin, Gerard. 2015. Disability and the Media. Basingstoke: Palgrave. Ellis, Katie and Kent, Mike. 2011. Disability and New Media. London: Routledge. Ellis, Katie and Kent, Mike, eds. 2017. Disability and Social Media: Global Perspectives. London: Routledge.Feintuck, M. 2003. “Walking the HighWire: The UK’s Draft Communications Bill.” European Public Law, 9 (1): 105–124. Feintuck, M. and Varney, M. 2006. Media Regulation, Public Interest and the Law, 2nd Edition. Edinburgh: Edinburgh University Press. Fraser, Benjamin, ed. 2016. Cultures of Representation: Disability in World Cinema Contexts. New York: Columbia University Press. Garland-Thompson, Rosemarie. 1997. Extraordinary Bodies: Figuring Physical Disability in American Literature and Culture. New York: Columbia University Press. Ghai, Anita. 2010. “The Psychology of Disabled People.” In Psychology in India (Vol. 3), edited by Girishwar Misra, 107–184. New Delhi: Pearson. Giddens, Anthony. 1991. Modernity and Self-identity: Self and Society in the Late Modern Age. Stanford, CA: Stanford University Press. Goggin, Gerard and Newell, Christopher. 2003. Digital Disability. The Social Construction of Disability in New Media. Lanham, MD: Rowman & Littlefield Goodley, Dan. 2014. Dis/ability Studies: Theorising Disablism and Ableism. London: Routledge. Goodley, Dan, Lawthom, Rebecca, Liddiard, Kirsty, and Runswick-Cole, Katherine. 2019. “Provocations for critical Disability Studies.” Disability & Society, 34 (6): 972–997.

Introduction 17 Goodley, Dan, Liddiard, Kirsty and Runswick-Cole, Katherine. 2018. “Feeling Disability: Theories of Affect and Critical Disability Studies.” Disability & Society, 33 (2): 197–217. Goodley, Dan and Runswick-Cole, Katherine. 2015. “‘Big Society? Disabled People with the Label of Learning Disabilities and the Queer(y)Ing of civil Society.” Scandinavian Journal of Disability Research, 17 (1): 1–13. Grusin, R. 2015. The Nonhuman Turn. Minneapolis: University of Minnesota Press. Hadley, Bree and McDonald, Donna. 2018. “Introduction.” In The Routledge Handbook of Disability Arts, Culture, and Media, edited by Bree Hadley and Donna McDonald, 1–18. London: Routledge. Hickey-Moody, Anna and Crowley, Vicki. 2010. “Disability Matters: Pedagogy, Media and Affect.” Discourse: Studies in the Cultural Politics of Education, 31 (4): 399–409. Hickey-Moody, Anna and Crowley, Vicki. 2012. Disability Matters: Pedagogy, Media and Affect. London: Routledge. Jensen, Tracey. 2013. “Austerity Parenting.” Soundings, 55: 61–71. McRuer, Robert. 2006. “We were Never Identified: Feminism, Queer Theory, and a Disabled World.” Radical History Review, 94 (Winter): 148–154. McRuer, Robert. 2018. Crip Times: Disability, Globalization, and Resistance. New York: New York University Press. Meekosha, Helen. 2011. “Decolonising Disability: Thinking and Acting Globally.” Disability & Society, 26 (6): 667–682. Mitchell, David T., Antebi, Susan and Snyder, Sharon L. eds. 2019. The Matter of Disability: Materiality, Biopolitics, Crip Affect. Ann Arbor, MI: The University of Michigan Press. Mitchell, David T. and Snyder, Sharon L. 2000. Narrative Prosthesis. Disability and the Dependencies of Discourse. Ann Arbor, MI: The University of Michigan Press. Moore, Lisa Jean and Kosut, Mary. 2010. The Body Reader: Essential Social and Cultural Readings. New York: New York University Press. Nguyen, Xuan Thuy. 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. Ofcom. 2015. Disabled Consumers’ Use of Communications Services. A Consumer Experience Report. www.ofcom.org.uk/research-and-data/accessibilityresearch/disabled-consumers-ownership-comms-services [Accessed 13 May 2018]. Pointon, Ann and Davies, Chris. 1997. Framed: Interrogating Disability in the Media. London: British Film Institute. Preston, Jeffrey. 2016. The Fantasy of Disability. Images of Loss in Popular Culture. London: Routledge. Puar, Jasbir K. 2017. The Right to Maim: Debility, Capacity, Disability. Durham: Duke University Press. Reddington, Sarah. 2019. “Affective Value and the Significance of Understanding Disabled Youth’s Intensification of Affects.” Canadian Journal of Disability Studies, 8 (3): 1–17. Schatz, JL and George, Amber. 2018. The Image of Disability. Essays on Media Representations. Jefferson, North Carolina: McFarland & Company, Inc., Publishers.

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Snyder, Sharon L. and Mitchell, David T. 2006. Cultural Locations of Disability. Chicago: The University of Chicago Press. Spinoza, Baruch. 2000. Ethics. Oxford: Oxford University Press. Spivak, Gayatri Chakravorty. 1985. “The Rani of Sirmur: An Essay in reading the Archives.” History and Theory, 24 (3): 247–272. Titchkosky, Tanya. 2016. “To Pee or Not to Pee.” in Rethinking Disability: World Perspectives in Culture and Society, edited by Patrick Devlieger, Steven Brown, Beatriz Miranda-Galarza and Megan Strickfaden, 331–349. Leuven, Belgium: Garant Publishing. Un.org. 2006. General Assembly Adopts Groundbreaking Convention, Optional Protocol on Rights of Persons with Disabilities. 13 December 2006. Available at: www.un.org/press/en/2006/ga10554.doc.htm Varney, Elizabeth. 2013. Disability and Information Technology. Cambridge: Cambridge University Press. Wolbring, Gregor. 2007 “New and emerging Sciences and Technologies, Ableism, Transhumanism and Religion, Faith, Theology and Churches.” Madang; International Journal of Contextual Theology in East Asia, 7: 79–112. Wolbring, Gregor. 2012 “Expanding Ableism: Taking Down the Ghettoization of Impact of Disability Studies Scholars.” Societies, 2 (3): 75–83. Worrell, Tracy R. 2018. Disability in the Media: Examining Stigma and Identity. Lanham: Lexington Books. Young-Bruehl, Elisabeth. 1996. The Anatomy of Prejudice. Cambridge, MA: Harvard University Press. Zhang, Lingling and Haller, Beth. 2013. “Consuming Image: How Mass Media Impact the Identity of People with Disabilities.” Communication Quarterly, 61 (3): 319–334.

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‘The Stuff of Nightmares’ Representations of Disability on the Online Bulletin Board Reddit Leah Burch

Introduction Attitudes towards disability are shaped by long-standing normative assumptions about the human body and mind and the problematization of those who deviate from them. During the eighteenth century, the privilege of pathological anatomy constituted the ‘suzerainty of the gaze’ (Foucault 1989, p. 2) during which the professional gaze came to ‘exercise its right of origin over truth’ (Foucault 1989, 2) about the body. Thus, disability moved from the ‘philosopher’s cabinets of curiosities’ to ‘the medical man’s dissection table’ (Garland-Thompson 1997, 57). Moving into the nineteenth-century era of Freak Shows, the bodies of disabled people were presented to the paying public to demonstrate the extremities of the human body (Garland-Thompson 1997). Such practices sought to confirm to the ‘normative’ figure, what they were not. Simultaneously, the development of Adolphe Quetelet’s l’homme moyen and Francis Galton’s ‘normal distribution’ curve in the nineteenth century contributed to a worldwide eugenic movement aiming to genetically enhance the human race (Davis 2013; Hubbard 2013). This movement adopted a ‘curative mode that privileged the full repair of defective organs or cells, and stigmatized patients who were unable to return to economically rational social roles’ (Borsay 2005, 1). Subject to increasing medicalization, disabled people were conceptualized as bodies in need of treatment (Sullivan 1991). Medicalized narratives continue to dominate current stories of disability, and have justified the routine exclusion, abuse and murder of disabled people (Quarmby 2011). Deficit-focused language continues to position disabled people outside of the boundaries of the human (Ralph et al. 2016). Constructed and mediated in the media domain, cultural representations reinforce stereotypes and assumptions about disability within the social domain. These representations serve to medicalize, patronize, criminalize and dehumanize disabled people, thus demonstrating the role of media in reproducing certain stereotypes surrounding disability (Barnes 1992). Such stereotypes sustain traditional assumptions of disabled people as unfortunate, tragic and costly (Emens 2013)

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and ultimately define individual perceptions of disability that are drawn upon when encountering, and categorizing, new information (Cameron 2014). The projection of personal and social anxieties onto disabled people is not a recent practice, but one rooted in the very fabric of social encounters. Disability, perceived by non-disabled people as ‘the sight of damage’ or ‘something gone wrong,’ has traditionally evoked fear, avoidance and hostility (Sinason 1992). In this sense, discrimination is not only a question of individual prejudice, but is rooted in society (Barnes 1992). It is, therefore, important to expose the platforms and technologies that disseminate these attitudes and continue to influence wider social attitudes towards disability. Recent work (Garthwaite 2011; Briant et al. 2013; Burch 2018) has sought to explore media representations of disability within the context of welfare. Such work demonstrates how long-standing tropes of disability as pitiable, a burden, and incapable, are being reproduced within the rhetoric of financial instability and dependency. Indeed, online media representations of disability reflect the current socio-economic climate which has been accompanied by a plethora of politically charged, anti-welfare discourses presented as ‘common-sense’ (Jensen & Tyler 2015). The dissemination of such narratives in social media is suggested to be one means of many ‘fundamental agents in the development and normalisation of disablist discourses, and to the creation of an inherently negative meta-narrative that renders disability as an unnecessary and burdensome cost’ (Burch 2018, 406). To this point, discriminating and disablist comments presented in media outlets are representative of personal anxieties and threats, charged by their wider social and political context. The growth of the World Wide Web has revolutionized the way in which we communicate across the globe. The offer of immediate, global and anonymous interaction has transformed how we gather and distribute information on an international scale (Buchstein 1997; Rheingold 2000; Yates 2001; Natilene Bowker & Tuffin 2002; Banks 2010; Fenton 2012). Researching forms of online communication provide an insight to the dissemination of traditional assumptions and norms in online media platforms. Such research grapples with questions surrounding the right to free speech, against the risk of harm for those who become the subjects of oppressive expressions. This chapter offers a snapshot of such processes, exploring and theorizing the ways in which the online bulletin board, Reddit, has enabled disabling conversations to emerge. The first part of this chapter outlines the literary backdrop of the research by drawing upon the concepts of disablism and ableism. I  outline David Hevey’s (1991) ‘dustbins for disavowal’ as a theoretical framework for exploring how representations of disabled people generate metanarratives of disability (Bolt 2014) that are constructed for and by

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non-disabled people. Next, I consider the relationship between disability and media, including the risks and possibilities this presents. Following this, I discuss research findings and, in particular, pay attention to the ways in which assumptions concerning quality of life and financial instability have been detrimental to the emergence of conversations surrounding euthanasia, prenatal testing, abortion and sterilization. Theoretical Framework: Disablism, Ableism and ‘dustbins for disavowal’ Disabling attitudes and stereotypes contribute to the construction of disability as an individual problem (Beckett & Buckner 2012). Disability, from this understanding, is not defined in terms of individual deficit but as ‘a social problem caused by social processes’ (Priestley 2003, 13). Fundamentally, the constitution of disability as a social construct, rather than individual problem, focuses on wider influences and relationships that exist in the social, cultural and political spheres. To quote Davis (2013, 1), ‘the problem is not the person with disabilities; the problem is the way that normalcy is constructed to create the “problem” of the disabled person.’ Disability, then, is a construct that has been sculpted by disabling values and practices throughout history. Disablism, from this perspective, describes the processes, systems and structures that are disablist, and contributes to the production of ‘disability.’ These processes problematize deviance from socially accepted standards (Bolt 2015) and are operationalized through the use of discriminatory, oppressive and/or abusive behaviours. Although not a concept you will find in the dictionary (Miller et al. 2004), disablism is present in a myriad of forms and expressions, and is a mundane intrusion to the lives of many disabled people (Madriaga 2007). Levin (2013), for example, explains how a culture of ‘banter’ has normalized disablist attitudes to the extent that disablist hate is often unacknowledged and unchallenged (Burch 2018). Similarly, Bolt (2016) contends that disablism is a common feature of humour, to which disablist language is employed in casual and indirect ways, as a means of marking particular characters out as deviant. In these works, disablism reaffirms a binary opposition to which disability is constructed as the inferior Other. Whether attitudinal or structural, disablism creates the problems of disability by imposing barriers on people with impairments, simultaneously driving up the processes of ableism. Disabling attitudes are a prevailing feature of our culture, and continue to position disability on the peripheries of society. Such positioning relies not simply on the problematization of difference, but on the ableist processes and assumptions that bolster the superiority of the so-called ‘normal’ figure. The concept of ableism describes ‘a system of dividing practices’ that seeks to differentiate and rank individuals

22 Leah Burch (Campbell  2017, 287). It refers to the systems and tools of measurement that have been established as means of marking out and enforcing distance between those considered to be ‘normal’ and ‘abnormal.’ This pervasive marking of minds and bodies provides an infrastructure for the constitution of what Campbell (2008, 2009, 2012) terms ‘ableist relations.’ Co-relationally and constitutively produced, ableist relations rely upon the fallacies of normalcy to sketch ontological boundaries of the human (Campbell 2009). Ableist relations reinforce the supremacy of ‘ableness’ against the flawed existence of the ‘Other’ figure (Hughes 2007). In the current socio-economic climate, ableism has provided ‘an ecosystem for the nourishment of ableism’ (Goodley et al. 2014, 981), aligning perceptions of humanness with the ability to flourish under strict work conditions. Often unconscious, the internalization of ableism aims to protect oneself from the anxieties and fears of the modern world, and drive up one’s sense of superiority as a ‘hard-working taxpayer’ (Hughes 2015). As explained by Bolt (2015), ableism is so pervasive and taken for granted that people aspire to the ideal subject position of the ‘hard-working taxpayer,’ gradually and unconsciously. Disablism reinforces this process and results in a plethora of disablist practices underpinning our social make-up. Disability, caught within these relational processes, becomes a scapegoat for the anxieties, insecurities and instabilities that arise in the pursuit to adhere to corporeal standards of ableism within the context of financial instability. These anxieties, as it will be discussed, revolve around notions of dependency, death and vulnerability. Disablism arises through a ‘negative and aversive reaction to the presence of disability’ and represents ‘fear for the precariousness of one’s own being and the vulnerabilities of our ephemeral flesh’ (Hughes 2012, 69). Within this process, disability is socially constructed in terms of the characteristics and fears that transgress ableist standards. In doing so, such bodies become spectacles of otherness, while those unmarked remain sheltered under the pretence of normalcy (Garland-Thompson 1997). Disabled people are used as containers for the unwanted, projected feelings of the dominant groups (Watermeyer & Swartz 2016). In the words of Hevey (1991), disabled people become ‘dustbins for disavowal,’ occupants of the difficult aspects of human existence, and the vulnerabilities that we naturally possess (Shakespeare 1997). Disability comes to be as an ‘other’ in the making of the self within a particular social context. That is, identities are crafted within specific social institutions and cultural formations, creating both the ‘self’ and the ‘other’ (Richards 1989). In this sense, narratives that reduce disability to such vulnerabilities reveal much more about the social and personal anxieties of the narrator than disabled people (McRuer 2006). Disablism, in other words, validates one’s own fascination with, and internalization of, ableism, gaining prevalence during periods of financial instability.

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Disability and the Media The World Wide Web has and continues to revolutionize and transform the social world. Indeed, the internet has created new potential for communication (Yates 2001) and is considered to be a powerful and dynamic amplifier of messages, values and ideas (Daniels 2008). As a tool, the internet can be manipulated to serve a myriad of purposes, reaching a diverse and ever-changing audience. For some writers, online platforms allow users to exist outside the conventions of the offline world (Bowker & Tuffin 2007). Online communication can therefore be liberating, allowing users to temporarily detach from their offline identity. In this way, the internet presents the opportunity for users to build their own identity, rather than the one constructed by the offline world (Bowker & Tuffin 2002; Huffaker & Calvert 2005). Indeed, it has allowed vibrant disability communities to emerge, establishing support networks (Williamson et al. 2001; Guo et al. 2005; Stamou et al. 2016) and opportunities for resistance and support. Recent examples of this include the use of Twitter hashtags, #justaboutcoping and #worldwithoutdowns, which aimed to turn ‘so-called truths inside out, and reveal their fabricated existence within an ableist imagination’ (Burch 2017, 1088). Additionally, an ongoing project funded by the Economic and Social Research Council (ESRC) ‘Living life to the fullest’ has used the flexibility and accessibility of online communication and social media as a means of collaboratively planning and conducting a research project with little face-to-face communication (Living Life to the Fullest 2018). In these cases, the internet offered flexibility and community, with affirmative consequences. The same facilities, however, of immediacy, anonymity and global reach allow for the dissemination of harmful messages. The transformation of communication has made the internet an ideal tool for the widespread expression of hate (Banks 2010). That is, the dissemination of hateful and/or oppressive attitudes is able to re-emerge in new ways on the internet (Cornwell & Orbe 1999), reaching audiences far beyond the parameters of the physical world (Duffy 2003; Slagle 2009). Online communication allows disablist attitudes to be shared and reinforced by providing a site for the disposal of the anxieties and fears of ableism through narrative representations of disability. Such representation relies upon cultural assumptions to fill in the missing details (GarlandThompson 1997) often reflecting much broader stereotypes of disability, which have been constructed and reconstructed through the narratives of powerful members of society (Cameron 2014). These narratives, it is contended, endorse the hegemony of ableism, and represent a culturally created metanarrative of disability as the ‘Other.’ A metanarrative is thus formed, predicated upon the characteristics and traits that cultural representations denote (Bolt 2014).

24 Leah Burch This Research This chapter draws upon findings from a small-scale research project that aimed to explore the expression of disablist hate on the online bulletin board, Reddit (Burch 2018). This project drew upon the context of shrinking financial support and vitriolic media representations of welfare, under austerity-measures. Thus, search terms included those related to financial instability and disability, for example ‘scrounger,’ ‘welfare,’ ‘cheat,’ ‘benefit claimant,’ ‘disabled’ and ‘disability.’ While these search terms did return some more positive discussions surrounding disability and the impacts of welfare reform, many comments remained to be underpinned by disablist attitudes presenting, for example, pity and infantilization. Many threads did also offer deep and thoughtful conversations surrounding disabled family members and personal experiences, demonstrating the potential for establishing strong support networks on Reddit. The original scope of the project, however, meant that these discussions were not subject to further analysis. With over 330 million users (Smith 2019) from approximately 215 countries (Reddit 2015a), Reddit offers international and cultural diversity. In addition, Reddit is heralded as a supporter of free speech and encourages its users to utilize the tools of anonymity. Specifically, the anonymity afforded by Reddit allows for ‘provocative, personal, and often-revealing aspects of a person’s life’ to be posted on online platforms with tangible connections back to that person’s life (Gullota et al. 2014). Thus, it is suggested that ‘the anonymity of the internet usually brings out the worst in people’ (Reddit 2014b) because ‘it is just easier to bitch about it on the internet’ (Reddit 2015b). So-called ‘throwaway accounts’ enable users to post comments under ‘temporary technical identities’ (Leavitt 2015) disassociated from their offline self. Demonstrated in previous work, the ability to post from these anonymous accounts is recognized widely by users, and often heralded as a unique and liberating feature of Reddit. Indeed, in response to a slight shake-up of content policy on Reddit, many users protested, posting comments such as ‘surely, edit, a pioneer of free speech will provide us an outlet for our angst’ (Reddit 2015b). Along with a number of other social media sites, Reddit has attempted to manage the content posted on their sites. Despite openly providing ‘a lot of leeway’ regarding content, Reddit’s content policy prohibits the expression of content that ‘encourages or incites violence’ or ‘threatens, harasses, or bullies’ (Reddit 2018). Thus, there are some regulatory measures that have been implemented as a means of reducing the presence of hateful content on Reddit (Reddit 2015c). For example, individual moderators of specific Reddit threads have the responsibility to temporarily ban users from posting content. More recently, five threads were removed from the site due to harassment. While these developments show improvement, the management of online platforms is a thorny issue.

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Findings ‘The stuff of nightmares’: Fear of Disability from the Non-disabled Imaginary According to Titchkosky (2016), when non-disabled people imagine the prospect of disability, they do so through the words and assumptions of ableism. From this imaginary, disability is positioned within a narrative of dependency, struggle and unhappiness. Imagined by one user: ‘I  wouldn’t want that life, so it is hard to think these guys are truly happy’ (Reddit 2014a) while another questions their very existence: ‘but how do you feel about being disabled? I mean, I would rather be dead honestly’ (Reddit 2012). Revealing a sense of authorship over the lives of disabled people, these comments demonstrate the fear towards disability when imagined by non-disabled people. What is more, they present a sense of distance felt between the orator and disabled people, between the ‘I’ and the ‘you.’ Doing so, disability is positioned as something distinct from the nondisabled imaginary and, thus, at a safe distance. Comments that construct divisions between the lives of disabled and non-disabled people maintain the safety of imagining, rather than living disability. Evident in assumptions surrounding quality of life, disability is imagined as ‘the stuff of nightmares’ and ‘a fate worse than death’ (Reddit 2012). For another user, disabled children are suggested to have been ‘stricken by the misfortune to live the rest of life as an imbecile trying to fumble [their] way towards the grave’ (Reddit 2012). These comments assume a pitiful and tormented existence (Overboe 2009), that is incomprehensible for the non-disabled imaginary. Put bluntly, ‘there are things worse than death. Rotting away, deprived of your beautiful physical and mental abilities’ (Reddit 2012). To rot suggests a story of deterioration and decay, and again makes a nod to the prospect of ‘fumbling’ towards the grave. Such an existence, as imagined through the values and assumptions of ableism, presents ‘the disavowal of the presence of death and mortality’ (Hevey 1991, 13). Thus, the lives of disabled people are positioned to occupy a liminal space of not quite living, ‘declassified but not yet reclassified’ (Murphy et al. 1988, 237). Disability occupies a murky existence between life and death outside of the imaginations of non-disabled people. The non-disabled imaginary often assumes that disability is a life lacking happiness and purpose. According to Wong (2000), the most common attitude felt towards death is fear, and in particular, the fear no longer being in existence. The fears of non-disabled people relating to both death and disability create a metanarrative of disability as a life not worth living. ‘Scrupulously described, interpreted, and displayed,’ the bodies, minds and behaviours of disabled people function as ‘icons upon which people charge their anxieties, convictions, and fantasies’

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(Garland-Thompson 1997, 56). Conceptualized as a ‘terrible, unending tragedy,’ disability becomes a future to avoid (Kafer 2013) or one that is too painful to confront (Sinason 1992). Such narratives are disabling in the stories that they tell, as well as the discussions that they evoke, providing fertile grounds for simplistic conversations around abortion and sterilization. Conversations surrounding abortion, prenatal testing and sterilization are often shaped by the assumption that disabled children are a ‘burden,’ who will ‘destroy the lives of the parents’ and bring ‘suffering’ to their family (Reddit 2014a). While a debate on prenatal testing, abortion and the right to ‘choose’ is out of scope for this chapter, it is necessary to note how negative imaginaries of disability shape these discussions. Specifically, where debate centres on tragedy ‘a future with disability is a future no-one wants, and the figure of the disabled person, especially the foetus or child, becomes the symbol of this undesired future’ (Kafer 2013, 3; see also Burch 2017). Such debates mirror those disablist attitudes presented on Reddit that support sterilization as a means of necessary precaution to preventing the misery and tragedy of disability. One user notes, ‘I’d prefer abortion, it’s much more humane than how I’d ever treat a defective child’ (Reddit 2012) while another proposes that ‘abortion or giving the  kid to a clinic would be so much more humane for both the kid and the parents’ (Reddit 2014c). Such comments, in addition to supporting the appropriateness of prenatal screening and abortion, similarly advocate for the use of disabled people within research. Among others, one user asserts that ‘severe mentally handicapped babies… should be used for research or killed’ (Reddit 2013b). Such comments diminish the value of disabled lives and present an uneasy reminder of the past, whereby the sterilization of those deemed to be ‘mentally defective’ was considered crucial for society (Hubbard 2013). In the United States, these ideas translated to the widespread adoption of sterilization laws, and resulted in an estimated 200,000 women being sterilized between 1930 and 1970 (Saxton 2013). While many of us would hope that conversations of forced sterilization are locked securely in the past, there was substantial support on Reddit. Justified by assumptions of ability and intelligence, users argued that disabled people did not understand enough about sex to reproduce, and that they were also unable to look after a child (Reddit, 2011) Thus, claims that ‘people like this should not be allowed to procreate’ (Reddit 2011) proposes forced sterilization as the most appropriate solution. Here disability is presented as something that must be managed through the actions of non-disabled people, coated within the justification of moral necessity and logic. Management of d isability thus takes the form of particularly damaging conversations concerning abortion and reproductive rights and again relates to perceived quality of life.

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The imagination of disability through the assumptions and values of ableism reinforces stories of inability and tragedy. Thus, the question of life itself is brought into discussion, with many users suggesting death as a more humane and moral response to disability. One user asked, ‘can we just pull the plug on coma patients and euthanize the severely retarded?’ (Reddit 2014a). Casually articulated, this comment proposes the use of mercy killing and euthanasia as obvious alternatives to living life as a disabled person. The support for euthanasia was widespread, with users noting that society would be in a much better situation, both financially and genetically, if eugenics was socially acceptable. Euthanasia is presented as a ‘swift and painless’ death (Reddit 2012) and an alternative to a ‘creature that will never fully develop’ (Reddit 2012). These comments render the lives of disabled people unbearable, consumed by pain and misfortune and, therefore, ‘absolutely pointless’ (Burleigh 1994). Such a story proposes death as an appropriate and humane solution to managing disability. Within this narrative, disabled people are made subject to a process of “(human) waste disposal” to which “unfit, invalid or unviable human relations [are] born with the mark of impending wastage” (Bauman 2004). Marked in this way, disabled people are presented as an infringement to the economic and genetic advancement of society. (Burch 2018, 403) Further analysis suggests that there are alternative justifications for death, predicated not simply upon assumptions of quality of life, but means of economic gain. Disabled people are perceived as ‘a colossal waste of energy and resources’ (Reddit 2013c). Here, the lives of disabled people are subject to cost-benefit analysis that is interrogated through the values of ableism and the logic of a ‘cultural political economy of welfare disgust’ (Jensen & Tyler 2015, 478). This cost-evaluation is evident in comments stating that ‘letting them die off saves resources’ (Reddit 2013c) and disabled people are ‘causing extreme harm to our economy as a whole’ (Reddit 2011). In recent years, welfare support has become a symbolic of deviance and deficit in the context of a shrinking welfare spending budget. Within this context, ‘the neoliberal, hard-working taxpayer’ is portrayed as the victim of financial inequality while disabled people and others receiving welfare support are painted as cheats, scroungers and skivers (Garthwaite 2011; Hughes 2015). Indeed, such representations constitute a metanarrative of disability within which disabled people are ‘objectified [and] framed in a narrative that bolsters the normate subject position’ (Bolt 2014, 9). With employability an increasingly important requirement of the body (Lakes 2011), feelings of inequality and resentment underpin much

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of the discussion surrounding disability and welfare support. Questions such as ‘why should society take care of all those who can’t take care of themselves?’ (Reddit 2014b) and ‘it’s not like that retarded baby will help society, right?’ (Reddit 2013c) reduce the value and purpose of the human life to one of financial stability and productivity. Within this narrow narrative, it is proposed that ‘the severely mentally disabled do not contribute to society’ (Reddit 2013b) and that, therefore, ‘they serve no purpose to society’ (Reddit 2014a). Demonstrating a process of ‘making invisible the very humanity of the victim’ (Bauman 1989), such comments reinforce the homogenization of particular groups as a threat to the social order, and their exclusion from the category of the human. Exclusion from the category of the human on the basis of economic contribution magnifies a metanarrative of disability that is formulated upon those unwanted characteristics of ableism. With economic productivity and ‘independency’ taking on particularly charged meanings within current notions of citizenship, disabled people become something of a nightmare in need of disposal and management.

Conclusion Throughout this chapter, I have explored some of the ways that disablist attitudes are distributed and reinforced on the online media platform, Reddit. While I am not suggesting that media platforms will always reinforce disablist attitudes towards disability, or that these are the only stories of disability that exist on such sites, social media provide a possible space that can be manipulated to share and reinforce disabling narratives. Indeed, the affordance of anonymous and disposable online identities allows for the safe distribution of demeaning and derogatory messages with other users (Gullota et al. 2014). While these stories exist on the online world, they are representative of narratives of disability that have long-standing prominence in the offline world. In this way, online media present an opportunity for these narratives to gain further momentum and should not be approached lightly due to their seemingly online existence. Drawing upon the context of austerity, particular representational narratives of disability have been shown to perpetuate harmful attitudes towards disability. These attitudes position disability as defective, dependent and a drain to society. Anxieties of one’s own financial positioning, perpetuated by media representations of disability, provide the undergirding logic that maintains the denigrating expulsions towards ‘national abjects’ (Jensen & Tyler 2015). Presented in the words of (Fritsch 2015, 48), disability is given meaning through the neoliberal hegemonic social imagination that defines disabled people as unworthy, inadequate, and

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dependent, while naturalising disability as excessive, contaminated, indicative of helplessness, pitiable, deviant, tragic, and inferior. These disablist attitudes have disabling consequences; by reinforcing a metanarrative of disability as an unworthy and unwanted state of being, such narratives justify the perception that disability is in need of treatment, cure or avoidance. Indeed, the disablist attitudes present on Reddit pave the way for the continued support of disabling systems and practices aiming to manage disability. Continued support, for example, for euthanasia, prenatal testing and abortion, and forced sterilization reinforce problematic quality of life assumptions and reject the variety of possibilities of living, being and giving as a person with impairments. The negative attitudes towards disability presented within these narratives become the defining features of disabled people (Garland-Thompson 1997) and proof of carefully constructed boundaries between ‘us’ and ‘them.’ Indeed, such narratives bolster the normate subject position by reducing the story of disability to one of misfortune. Through the generation and preservation of narratives of disability, such as those explored within this chapter, it is possible for non-disabled people to deny their own human fragilities by casting them aside as characteristics confined to disability (Garland-Thompson 1997; Watermeyer & Swartz 2016). Disability becomes ‘necessary for the reiteration of “truth” of the “real/ essential” human self who is endowed with masculinist attributes of certainty, mastery and autonomy’ (Campbell 1999, 58). Disablism not only problematizes difference but also operates alongside ableism to shape and reinforce normative assumptions about the mind and body. As Garland-Thompson describes: ‘the meanings attributed to extraordinary bodies reside not in inherent physical flaws, but in social relationships in which one group is legitimised…by systematically imposing the role of cultural or corporeal inferiority on others’ (1997, 7) The disablist comments on Reddit presented in this chapter feed into this ongoing process of subjugation and legitimation by reinforcing a metanarrative of disability that resembles the characteristics and vulnerabilities feared by non-disabled people. What is more, they contribute to the normalization of discrimination and hate towards disabled people. While supporters of free speech might suggest that ‘opinions in and of themselves are not harmful’ (Bruce 2001, xviii), everyday expressions of prejudice can very quickly develop into a culture that tolerates discrimination (Nemes 2002) and perpetuates power inequalities within society (Slagle 2009). In support of growing scholarship surrounding disablist hate (Quarmby 2011; EHRC 2012; Sherry 2012; Levin 2013; Roulstone & Mason-Bish 2013), the findings of this project suggest that we need to take ‘casual’ or ‘aversive’ disablism (Deal 2007) more seriously and situate devaluing, denigrating and disempowering discourses of disability under the label of ‘hate speech.’

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References Banks, J., 2010. Regulating hate speech online. International Review of Law, Computers & Technology, 24(3), pp. 233–239. Barnes, C., 1992. Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People. Halifax. Ryburn Publishing. Bauman, Z., 1989. Modernity and the Holocaust. Cambridge: Polity Press. Bauman, Z., 2004. Wasted Lives: Modernity and Its Outcasts. Cambridge: Polity Press. Beckett, A. & Buckner, L., 2012. Promoting positive attitudes towards disabled people: definition of, rationale and prospects for anti-disablist education. British Journal of Sociology of Education, 33(6), pp. 873–891. Bolt, D., 2015. Not forgetting happiness: the tripartite model of disability and its application in literary criticism. Disability & Society, 30(7), pp. 1102–1117. Bolt, D., 2016. Pretending to be a normal human being: peep show, sitcom, and the momentary invocation of disability and the momentary invocation of disability. Disability & Society, 31(6), pp. 745–757. Bolt, D., 2014. The Metanarrative of Disability: A Re-Reading of TwentiethCentury Anglophone Writing. Ann Arbor: The University of Michigan Press. Borsay, A., 2005. Disability and Social Policy in Britain Since 1750. Basingstoke: Palgrave Macmillan. Bowker, N. & Tuffin, K., 2002. Disability discourses for online identities. Disability & Society, 17(3), pp. 327–344. Bowker, N. & Tuffin, K., 2007. Understanding positive subjectivities made possible online for disabled people. New Zealand Journal of Psychology, 36(2), pp. 63–71. Briant, E., Watson, N. & Philo, G., 2013. Reporting disability in the age of austerity: the changing face of media representation of disability and disabled people in the United Kingdom and the creation of new ‘folk devils’. Disability & Society, 28(6), pp. 874–889. Bruce, T., 2001. The New Thought Police. New York: T. R. Press. Buchstein, H., 1997. Bytes that bite: the internet and deliberative democracy. Constellations, 4(2), pp. 248–263. Burch, L., 2017. A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping. Disability and Society, 32(7), pp. 1085–1089. Burch, L., 2018. ‘You are a parasite on the productive classes’: online disablist hate speech in austere times. Disability and Society, 33(3), pp. 392–415. Burleigh, M., 1994. Death and Deliverance, Cambridge: Cambridge University Press. Cameron, C., ed., 2014. Disability Studies: A Student’s Guide. London: Sage Publications. Campbell, F., 2009. Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan. Campbell, F., 2017. Queer anti-sociality and disability unbecoming: an ableist relations project? In O. Sircar & D. Jain, eds. New Intimacies/Old Desires: Law, Culture and Queer Politics in Neoliberal Times. New Delhi: Zubaan, pp. 280–316.

‘The Stuff of Nightmares’

31

Campbell, F., 1999. “Refreshingly disabled”: interrogations into the corporeality of “disabilised” bodies. Australian Feminist Law Journal, 12(1), pp. 57–80. Campbell, F., 2008. Refusing able(ness): a preliminary conversation about ableism. Journal of Media and Culture, 11(3), pp. 1–9. Campbell, F., 2012. Stalking ableism: using disability to expose “abled” narcissism. In D. Goodley, B. Hughes, & L. Davis, eds. Disability and Social Theory: New Developments and Directions. Basingstoke: Palgrave Macmillan, pp. 212–231. Cornwell, N. & Orbe, M., 1999. Critical perspectives on hate speech: the centrality of “dialogic listening.” International Journal of Listening, 13(1), pp. 75–96. Daniels, J., 2008. Civil rights, and hate speech in the digital era. In A. Everett, ed. Learning Race and Ethnicity: Youth and Digital Media. Cambridge: The MIT Press, pp. 129–154. Davis, L., 2013. Introduction: normality, power, and culture. In L. Davis, ed. The Disability Studies Reader. New York: Routledge, pp. 1–16. Deal, M., 2007. Aversive disablism: subtle prejudice toward disabled people. Disability & Society, 22(1), pp. 93–107. Duffy, M., 2003. Web of hate: a fantasy theme analysis of the rhetorical vision of hate groups online. Journal of Communication Inquiry, 27(3), pp. 291–312. EHRC, 2012. Out in the Open: Tackling Disability-Related Harassment, a Manifesto for Change. Equality and Human Rights Commission. London. Emens, E., 2013. Disabling attitudes: U.S. disability law and the ADA amendments act. In L. Davis, ed. The Disability Studies Reader. New York: Routledge, pp. 42–60. Fenton, N., 2012. The internet and social networking. In J. Curran, N. Fenton, & D. Freedman, eds. Misunderstanding the Internet. London: Routledge. Foucault, M., 1989. The Birth of the Clinic. London: Routledge. Fritsch, K., 2015. Desiring disability differently: neoliberalism, heterotopic imagination and intra-corporeal reconfigurations. Foucault Studies, 19(1), pp. 43–66. Garland-Thompson, R., 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press. Garthwaite, K., 2011. ‘The language of shirkers and scroungers?’ Talking about illness, disability and coalition welfare reform. Disability & Society, 12(2), pp. 369–372. Goodley, D., Lawthom, R. & Runswick-Cole, K., 2014. Dis/Ability and austerity: beyond work and slow death. Disability & Society, 29(6), pp. 980–984. Gullota, R., Odom, W., Faste, H. & Forlizzi, J., 2014. Legacy in the age of the internet: reflections on how interactive systems shape how we are remembered. In DIS’ 14 Proceedings of the 2014 conference on Designing Interactive Systems, June 2014. New York. Guo, B., Bricout, J. & Huang, J., 2005. A common open space or a digital divide? A social model perspective on the online disability community in China. Disability & Society, 20(1), pp. 49–66. Hevey, D., 1991. From self-love to the picket line: strategies for change in disability representation. In S. Leeds, ed. Transcripts of a Disability Arts and Culture Seminar, November 20th 1991. London: Shape Publications.

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Hubbard, R., 2013. Abortion and disability: who should and should not inhabit the world? In L. Davis, ed. The Disability Studies Reader. New York: Routledge, pp. 74–86. Huffaker, D. & Calvert, S., 2005. Gender, identity and language use in teenage blogs. Journal of Computer-Mediated Communication, 10(2) [online]. Available from < https://onlinelibrary.wiley.com/doi/full/10.1111/j.1083-6101.2005. tb00238.x> Accessed 06.01.2019. doi:10.1111/j.1083-6101.2005.tb00238.x Hughes, B., 2007. Being disabled: towards a critical social ontology for disability studies. Disability & Society, 22(7), pp. 673–684. Hughes, B., 2015. Disabled people as counterfeit citizens: the politics of resentment past and present. Disability & Society, 30(7), pp. 991–1004. Hughes, B., 2012. Fear, pity and disgust: emotions and the non-disabled imaginary. In N. Watson, A. Roulstone, & C. Thomas, eds. Routledge Handbook of Disability Studies. Abingdon: Routledge, pp. 67–77. Jensen, T. & Tyler, I., 2015. “Benefit broods”: the cultural and political crafting of anti-welfare commonsense. Critical Social Policy, 35(4), pp. 470–491. Kafer, A., 2013. Feminist, Queer, Crip. Indiana: Indiana University Press. Lakes, R., 2011. Work-ready testing: education and employability in neoliberal times. Journal for Critical Education Policy Studies, 9(1), pp. 317–340. Leavitt, A., 2015. “This is a throwaway account”: temporary technical identities and perceptions of anonymity in a massive online community. In 2015 Conference on Computer Supported Cooperative Work (CSCW’15). Vancouver. Levin, J., 2013. Disablist violence in the US: unacknowledged hate crime. In A. Roulstone & H. Mason-Bish, eds. Disability, Hate Crime, and Violence. Abingdon: Routledge, pp. 95–105. Living Life to the Fullest, 2018. The co-researcher collective. Living Life to the Fullest. [online] Available from < https://livinglifetothefullest.org/the-coresearcher-collective/> Accessed 06.01.2020. Madriaga, M., 2007. Enduring disablism: students with dyslexia and their pathways into UK higher education and beyond. Disability & Society, 22(4), pp. 399–412. McRuer, R., 2006. Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Miller, P., Parker, S. & Gillinson, S., 2004. Disablism: How to Tackle the Last Prejudice. London: Demos. Murphy, R., Scheer, J., Murphy, Y. & Msck, R., 1988. Physical disability and social liminality: a study in the rituals of adversity. Social Science & Medicine, 26(2), pp. 235–242. Nemes, I., 2002. Regulating hate speech in cyberspace: issues of desirability and efficacy. Information & Communications Technology Law, 11(3), pp. 193–220. Overboe, J., 2009. Affirming an impersonal life: a different register for disability studies. Journal of Literary & Cultural Disability Studies, 3(3), pp. 241–256. Priestley, M., 2003. Disability: A Life Course Approach. Cambridge: Polity Press. Quarmby, K., 2011. Scapegoat: Why We are Failing Disabled People. London: Portobello Books. Ralph, S., Capewell, C. & Bonnet, E., 2016. Disability hate crime: persecuted for difference. Journal of Special Education, 43(3), pp. 215–232.

‘The Stuff of Nightmares’

33

Reddit, 2015a. About Reddit. Reddit. [online] Available from < https://www. redditinc.com/> Accessed 06.01.2020. Reddit, 2015b. Being Fat is Not a Disability. Reddit. [online] Available from Accessed 06.01.2020. Reddit, 2014a. CMV: Aborting a Fetus that has a Severe Disability Shouldn’t be Looked Down Apon. Reddit. [online] Available from < https://www. reddit.com/r/changemyview/comments/2dg4c1/cmv_aborting_a_fetus_that_ has_a_severe_disability/> Accessed 06.01.2020. Reddit, 2018. Content Policy. Reddit. [online] Available from < https://www. redditinc.com/policies/content-policy> Accessed 06.01.2020. Reddit, 2011. Friend is Scamming $850 a Month by (Falsely) Claiming He Has a Disability. Reddit. [online] Available from < https://www.reddit. com/r/AskReddit/comments/g0hd1/friend_is_scamming_850_a_month_by_ falsely/> Accessed 06.01.2020. Reddit, 2012. Get Out the Throw-Aways: Dear Parents of Disabled Children, Do You Regret Having Your Child(ren) or Are You Happier with them in Your Life? Reddit. [online] Available from < https://www.reddit.com/r/ AskReddit/comments/sl93q/get_out_the_throwaways_dear_parents_of_ disabled/> Accessed 06.01.2020. Reddit, 2014b. How Does R/Libertarian Feel about Disability Welfare? Reddit. [online] Available from < https://www.reddit.com/r/Libertarian/ comments/2bape7/how_does_rlibertarian_feel_about_disability/> Accessed 06.01.2020. Reddit, 2013b. I Believe that Children with Severe Mental Handicaps Should be Killed at Birth. CMV. Reddit. [online] Available from < https://www.reddit. com/r/changemyview/comments/1dpfgl/i_believe_that_children_with_ severe_mental/> Accessed 06.01.2020. Reddit, 2014c. I Don’t See the Joy in Raising a Mental Handicapped Child CMV. Reddit. [online] Available from < https://www.reddit.com/r/changemyview/ c o m m e n t s / 2 0 b c 4 h / i _ d o n t _ s e e _ t h e _ j o y_ i n _ r a i s i n g _ a _ m e n t a l / > Accessed 06.01.2020. Reddit, 2013c. If the Human Race Left Natural Selection Do Its Work and Let Those with Disabilities/Illnesses/Injuries Pass Away Without Trying to Revive Them, Where Would We Be Now? Reddit. [online] Available from Accessed 06.01.2020. Reddit, 2015c. Removing Harassing Subreddits. Reddit. [online] Available from Accessed 06.01,2020. Rheingold, H., 2000. The Virtual Community. Cambridge: The MIT Press. Richards, B., 1989. Introduction. In B. Richards, ed. Crises of the Self: Further Essays on Psychoanalysis and Politics. London: Free Association Books, pp. 1–27. Roulstone, A. & Mason-Bish, H., 2013. Introduction: disability, hate crime and violence. In A. Roulstone & H. Mason-Bish, eds. Disability, Hate Crime and Violence. Abingdon: Routledge, pp. 1–9. Saxton, M., 2013. Disability rights and selective abortion. In L. Davis, ed. The Disability Studies Reader. New York: Routledge, pp. 87–100.

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Shakespeare, T., 1997. Cultural representation of disabled people: dustbins for disavowal? In L. Barton & M. Oliver, eds. Disability Studies: Past Present and Future. Leeds: Leeds University Press, pp. 217–233. Sherry, M., 2012. Disability Hate Crimes: Does Anyone Really Hate Disabled People? Abingdon: Routledge. Sinason, V., 1992. Mental Handicap and the Human Condition: New Approaches from the Tavistock. London: Free Association Books. Slagle, M., 2009. An ethical exploration of free expression and the problem of hate speech. Journal of Mass Media Ethics, 24(4), pp. 238–250. Smith, C. (2019) 80 Amazing Reddit Statistics and Facts (2019) By the Numbers. Digital Marketing Ramblings. [online] 6th September, 2019. Available from < https://expandedramblings.com/index.php/reddit-stats/> Accessed 06.01.2020. Stamou, A.G., Alevriadou, A. & Soufla, F., 2016. Representations of disability from the perspective of people with disabilities and their families: a critical discourse analysis of disability groups on Facebook. Scandinavian Journal of Disability Research, 18(1), pp. 1–16. Sullivan, M., 1991. From personal tragedy to social oppression: the medical model and social theories of disability. New Zealand Journal of Industrial Relations, 16(1), pp. 255–272. Titchkosky, T., 2016. “Imagine disability… now imagine trouble”: working on the edges of imaginal politics. Conference Paper presented at Theorsing Normalcy and the Mundane: Precarious Positions July 2016. Manchester Metropolitan University. Watermeyer, B. & Swartz, L., 2016. Disablism, identity and self: discrimination as a traumatic assault on subjectivity. Journal of Community and Applied Social Psychology. Williamson, K., Wright, S., Schauder, D. & Bow, A., 2001. The internet for the blind and visually impaired. Journal of Computer-Mediated Communication, 7(1). [online] Available from < https://onlinelibrary.wiley.com/doi/ full/10.1111/j.1083-6101.2001.tb00135.x> Accessed 06.01.2020. Wong, P., 2000. Meaning of life and meaning of death in succesful aging. Death Attitudes and the Older Adult. Yates, S., 2001. Researching internet interaction: sociolinguistics and corpus analysis. In M. Wetherell, S. Taylor, & S. Yates, eds. Discourse as Date: A Guide for Analysis. Milton Keynes: The Open University, pp. 93–147.

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Madeline Stuart as Disability Advocate and Brand Exploring the Affective Economies of Social Media Maria Bee Christensen-Strynø and Camilla Bruun Eriksen

Madeline Stuart is a 23-year-old fashion model from Australia who lives with Down syndrome. Since the spring of 2015 she has gained extensive visibility and attention on social media by documenting and promoting her achievements in the international fashion industry. She became a social media phenomenon after her mother created a public Facebook profile with photographs of her, and ever since she has travelled around the world to attend fashion industry shows and events. For instance, she became the second person with Down syndrome who appeared on a New York Fashion Week runway in September 2015 (only surpassed by the American actress Jamie Brewer who modelled during this prominent semi-annual fashion event earlier the same year). Currently Stuart has more than 650,000 followers on her public Facebook profile and 195,000 on Instagram (retrieved January 2019). From early on, after the first pictures of Stuart went viral, her online presence was characterized by a high level of activity distributed across a number of social media platforms including Facebook, Instagram and Twitter, supplemented by a standalone website and a (now deactivated) blog. Her consistent and massive presence has been marked by an explicit advocacy for disability visibility and inclusion, which is perspicuously stated in her Facebook profile description that says: ‘I am a model, I  hope through modelling I can change society’s view on people with disabilities, exposure is creating awareness, acceptance and inclusion’ (Facebook 2018). At the same time, gaining visibility and attention has led to an increased professionalization and celebrification of Stuart’s self-presentation in which she has taken on a number of versatile and distinctive roles and identities as supermodel, advocate, dancer, role model, actor and philanthropist (Madelinestuartmodel 2018). Recently, she has added fashion designer and webshop owner to the list by launching her own clothing label 21 Reasons Why, which through its direct reference to

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the ‘extra’ chromosome that is often assigned as a defining (biomedical) marker of being a carrier of Down syndrome reflects and highlights the co-presence and intermingling of commercial interests and Stuart’s self-identification as a disability advocate. In this chapter, we explore the dynamics and tensions relating to the co-existence of Stuart’s self-commodification and disability advocacy. We look into the ways in which Stuart manages and negotiates her different roles and identities through transformative processes of celebrification (Jerslev 2014, 2016) on social media defined by a set of specific strategies such as (subcultural) micro-celebrity (Abidin 2016; Marwick 2013; Raun 2018; Senft 2008, 2013) and Instafame (Marwick 2015). Our analysis is thus situated broadly within a cultural studies approach to disability with a critical orientation towards cultural representation (Garland-Thomson 1997, 2009; Snyder & Mitchell 2000; Waldschmidt et al. 2017) through which our particular analytical focus is the selfrepresentation exercised by Stuart on social media. Inspired by Sara Ahmed (2010, 2014 [2004]), we understand the Stuart case through a conceptual framework of affective economies, which is operationalized for the purpose of thinking about disability as a form of emotional currency, and which through circulation and exchange acquires surplus value. In this framework, disability, then, is explored in itself as an empty sign to which meaning and value attach themselves through their continuous circulation. This is effectively demonstrated by paying analytical attention to Stuart’s framing of the common cultural trope of weight loss as a significant transformative process, which, we argue, performs as a gateway to legitimizing and branding Down syndrome and disability as a particular capitalizable identity. We conclude the chapter with a discussion of the accumulation of value and capitalization of Stuart’s social media practice and her career as a model.

Madeline’s Story: ‘The World’s Most Famous Model with Down Syndrome’ Stuart’s story of becoming a model is told on her personal website as Madeline’s Story. The ‘plot’ in this unfolds as a familiar tale of genesis, in which a completely unknown person achieves success, fame and wealth on the background of their online accomplishments. The narrative development in this type of story builds upon well-known meritocratic principles such as talent, ambition and willpower (Littler 2018), which have been widely promoted and institutionalized in contemporary popular cultural entertainment genres such as reality and makeover TV shows (Weber 2009). In other words, Stuart is framed through positions that are culturally recognizable to many people, but with ‘a twist,’ since

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she is not just an unknown young woman who wishes to become a fashion model, she also lives with Down syndrome. In Madeline’s Story we are told that: [a]s with many people with Down syndrome, Madeline struggled with her weight for a long time, and in early 2015 she decided to get healthy and chase after her dreams […]. She lost over 20 kg, and is now changing society’s perception of people with disabilities, one photo shoot at the time. (Madelinestuartmodel 2018) It is highlighted that she has been labelled ‘the world’s most famous model with Down syndrome’ in the media, and that she has been featured and headlined in numerous international media stories, as well as that she has been travelling around the world since her first appearances on social media. First of all, Madeline’s Story illustrates important developments and trends of contemporary digital media practices in relation to disability, in which online and social media can be seen as creating opportunities for a new disabled workforce to enter the scene of mainstream media (Ellis 2016). It is noticeable that not only has the internet gained more recognition as an alternative site of disability representation, but online spaces are also becoming an area in which a growing number of people who self-identify as disabled disclose and frame their personal experiences of disability as proficient skillsets (ibid., 91–92). This points to an important development in which disability shifts away from traditional locations of media representation and sociality as an always tragic and pitiful figure (cf. Garland-Thomson 1997; Liddiard 2014; McRuer 2006; Preston 2016). Thus, on social media the conventional predetermination of disability as a devalued form of identity and embodiment seems to become more ambiguous and is now being challenged by entrepreneurial (and activist) voices from an emergent globalized disability community (Ellis & Goggin 2015; Trevisan 2017). In the light of an increasingly precarious job market (Beer 2013, 102) and the information-saturated global media economy’s applauding of the ability to attract attention (Fairchild 2007, 359), this shift might not be all that surprising. As expressed by disability and media scholar Katie Ellis: ‘In an era of self as product and constant networking for the next job, disability has become an asset’ (2016, 93). This is a statement that points towards the growing possibilities of professionalizing and branding disability in new ways, and which is also particularly pertinent in relation to Stuart’s presence on social media as her professional self becomes openly entangled with contemporary notions of celebrated and celebrified selfhood.

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The Logics of Celebrification: (Subcultural) Micro-celebrity and Instafame Celebrity strategies, and celebrification as a performative practice of doing celebrity (Jerslev 2014), have progressively become a rich area of study in social media research, in which the conceptualization of micro-celebrity has come to denote a way of naming the orchestrations of characteristic approaches and practices of self-representation (Abidin 2016; Jerslev 2016; Marwick 2013, 2015; Raun 2018; Senft 2008, 2013). According to social media scholar Alice Marwick (2013, 2015), individual private users of social media benefit from the use of microcelebrity strategies in order to increase their online popularity. Marwick explains how micro-celebrity, in comparison to traditional notions of celebrity, clearly constitutes itself as a performative practice, as something people do instead of as an ascribed value of identity (2015, 140). As a supplementary specification and variation of micro-celebrity, Marwick (2015) has also introduced the concept of Instafame, which directly relates to attaining celebrity status on the social media platform Instagram, but also contrasts some of the central conceptual characteristics of micro-celebrity. Whereas the practice of micro-celebrity is conditioned through an explicit readiness and familiarity that presupposes personal availability, understood as a dedicated willingness to engage in direct and sometimes intimate exchanges with fans and followers (Marwick 2013, 118), an instafamous position puts emphasis on more conventional hierarchies of celebrity status, in which success is obtained through the capability of visually imitating traditional mainstream celebrity culture. In this sense, as Marwick asserts, celebrity is re-inscribed with traditional iconographies such as glamour, luxury and wealth (2015, 139). These positions of celebrification are both of relevance in relation to Stuart. Although she carries out and performs an identity of a considerate and attentive micro-celebrity who acknowledges and appreciates her followers, at the same time she also manages to maintain a clear distance to her fans, which is most evident in her use of Instagram. Contrasting the more varied mix of images and information she shares on Facebook or Twitter, Stuart’s profile on Instagram is exclusively centred on images of herself, most of which are related to successful moments in her career as a model. The importance of visual self-control is intensified on Instagram due to the affordances of the platform, which privilege the aestheticized and stylistic image post rather than explanatory captions or comments (Marwick 2015, 143). This is reflected in Stuart’s use of the platform and thus makes her Instagram profile an exemplary site of exploration. Consequently, we frame Stuart within a discourse of celebrification on social media that mixes strategies of micro-celebrity and Instafame. However, as this framing takes place primarily within the subculture of

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disability media representation, in which Stuart’s minority status constitutes a key component in the branding of her as a celebrity, and which also permeates her whole presence on social media, it is of relevance to add yet another specification to the logics of celebrification. This is the concept of subcultural micro-celebrity, which was introduced by Tobias Raun (2018) in connection with a study of the developments in trans-vlogging on YouTube. According to Raun this specific appendix to micro-celebrity clarifies and puts emphasis on an important form of political identity that occurs in between positions of (activist) minority cultural selfpresentation and self-commercializing micro-celebrity strategies. Subcultural micro-celebrity corresponds well with Stuart’s explicit claims for a minority political position of disability (or different ability, as she prefers to call it) through positioning herself as a unique and marketable brand. This is particularly apparent in social media posts exhibiting her alliances and engagements with specific Down syndrome and disability organizations and communities. One example of this is a photograph of Stuart posing in a T-shirt with the print: ‘I ♥ HOMIES WITH EXTRA CHROMIES,’ which is supplemented by an image caption with a personal endorsement of a small shirt-making business that promotes and raises awareness on Down syndrome (Instagram 2017).1 The framing of Stuart, through the logics of celebrification, draws out some of the immediate characteristics of how disability is being reframed on social media. In the following section we introduce the concept of affective economies, which constitutes a framework that can help us grasp and conceptualize the complex signification and circulation of disability within Stuart’s social media self-representation.

Affective Economies and Disability Borrowing from the Marxian critique of the logic of capital Ahmed (2014) claims that affect too is a form of capital (11). Just as is the case with money: ‘[…] affect does not reside positively in the sign or commodity, but is produced as an effect of its circulation’ (ibid., 45). In this way Ahmed is suggesting that emotions do not (and cannot) reside inside someone: ‘[…] meaning that “the subject” is simply one nodal point in the economy, rather than its origin and destination’ (ibid., 46). 2 Instead feelings are to be found between bodies, signs and objects as they move through ‘sticky’ associations creating what Ahmed calls the ‘rippling’ effect of emotions (ibid., 45). In this way the distribution of signs or objects across a social as well as psychic field converts into affect: ‘Signs increase in affective value as an effect of the movement between signs: the more signs circulate, the more affective they become’ (ibid.). The concept ‘affective economies,’ then, is a tool for Ahmed to dismantle the circuits of affective value and the construction of social norms.

40 Maria Bee Christensen-Strynø and Camilla Bruun Eriksen However, emotions not only stick – they slide too. Focusing on hate, Ahmed explains how emotions get ‘stuck’ to a social figure (i.e. the asylum seeker) by sliding both sideways between other signs, constructing a relation of resemblance between signs, bodies and figures, as well as backwards, and thereby: ‘[…] reopening past associations, which allow some bodies to be read as being the cause of “our hate”’ (ibid., 54). In this way Ahmed’s theorization of affective economies becomes especially useful when trying to identify or simply ‘follow’ an almost never straight line between signs, bodies, feelings, images and (affective) narratives. Also, worth noticing – as does Nirmala Erevelles (2014) in ‘Becoming Disabled’: ‘Ahmed’s argument enables affective relations between assemblages that do not have to claim humanist notions of subjectivity’ (230). In other words, Ahmed’s definition of affect allows us to follow the very complex ways a social body, e.g. the disabled body, is interrelated with (and made possible through its proximity to) not only other bodies but also signs, objects and communities – as it underlines and makes clear, how affect helps structure some bodies as more fragile and vulnerable than others. It is of relevance to point out that an analytical approach to disability through affect also extends into important themes of agency. Through the mapping of affective signs the disabled body reveals itself as a site of micro-political negotiations of social identity. As agency travels along the construction of social identities, some of which are considered more or less agentive than others, it becomes evident that reading disability through affect is also a review of the ability to gain agency (Hickey-Moody & Crowley 2010). Furthermore, when understanding affect as a system of economic valuation, agency not only can be viewed as a valuable by-product of inhabiting specific social identities but also becomes negotiable and obtainable through the continuous circulation of affective signs that, as Ahmed suggests, ‘slide’ and ‘stick’ – in this case to a body clearly marked with disability in the form of Down syndrome. An example of this is a post made by Stuart in which she is posing in a Diesel-shirt with the word ‘abort’ written across her chest under the headline: ‘The more hate you wear, the less you care’ supplemented by the hashtag ‘#DieselHateCouture’ (Instagram 2018a). In collaboration with Diesel, Stuart states that she wants to make her followers aware that hate is often associated with Down syndrome: ‘Hate starts at a very early age with Down Syndrome, but it is the worst sort of hate, it is the hate that comes across in an accepted way for most of society.’ Stuart goes on to explain that expectant parents are most often recommended to terminate a pregnancy in an effort ‘[…] to eradicate Down syndrome’ (ibid.) if detected. As pointed out by Stuart, hate and Down syndrome are closely connected, or in Ahmed’s vocabulary: hate ‘sticks’ to bodies marked by the ‘sign’ Down syndrome, a hate, Stuart in a later post explains, she is no stranger to. In this post a screenshot shows a personal message sent to Stuart by an 11-year-old child wishing her dead (Instagram 2018b). However, towards the end of the first-mentioned Diesel-post, Stuart also

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declares that it is, in fact, this particular hate connected to Down syndrome that has given her ‘[…] the strength to show my worth and prove to the world I am here and I am worthy’ (Instagram 2018a). Also generally using hashtags such as #inclusion, #diversity and #timesarechanging, Stuart takes part in a negotiation of the affective signs associated with Down syndrome by pointing out that the hate, which through metonymic slides between signs like ‘abortion,’ ‘eradication’ and ‘death,’ gets distributed to and across her own body. This shows that Stuart attempts to take part in a conversation about diversity and inclusion, which can be read as an effort to convert hate into positive-connoted actions such as finding ‘the strength’ to show her ‘worth.’ With Ahmed’s relational model of the sociality of emotions in mind, disability can be seen in itself as an empty sign to which meaning and value attach themselves through their continuous circulation, contact and juxtaposition with other signs. However, the circulation of signs is not the sum of one’s own choosing and several disability scholars have analysed how visible signs of disability are inscribed in what we in Ahmed’s terminology could call emotional economies of fear, disgust, pity, etc. An example of this is the way in which the disabled figure in popular cultural representations almost always falls short of mainstream perceptions of what constitutes a ‘real and ‘whole’ body, and therefore becomes a sign of shame and unhappiness (Clare 1999; Garland-Thomson 1997; McRuer 2006). Thus, when Stuart enters the self-representational scene of social media, her visible markers of Down syndrome and disability are already enrolled in a ‘failed’ economy, so to speak. As some disability scholars have pointed out, both negative and positive representations of disability have contributed to a number of dominant stereotypes, figures and narratives, such as the overcompensating supercrip (e.g. para-athletes portrayed as particularly and extraordinarily skilled in spite of their disability, which is also a trope that could very well appear on a list of Down syndrome stereotypes (see Ellis 2015; Garland-Thomson 1997; Snyder & Mitchell 2000). But, as is discussed later in this chapter, disability in Stuart’s social media practice is being revaluated as it attaches itself to and travels through various signs (such as luxury goods and exclusive events) and narratives (of both celebrification and weight loss). Paying special attention to the main trajectories that help Stuart renegotiate and convert disability from a devalued position of embodiment within a failed economy of disability into a valuable currency of celebrated selfhood we will now turn to the grand narrative of weight loss.

Revaluating Disability through Weight Loss As we have briefly touched upon when introducing Stuart’s selfrepresentational practice on social media, the narrative of transition and transformation through weight loss is given substantial attention in

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Madeline’s Story (Madelinestuartmodel 2018). This storyline is further projected in Stuart’s social media posts, especially on Instagram where Stuart regularly uploads pictures from the gym, and of her performing sports activities, which are also often supplemented by body positive hashtags such as #nolimits, #womenshealth and #diversity (Instagram 2018c). In the following analysis of Stuart’s self-representation of weight loss, we focus on her images from Instagram. It is thus of relevance to note that social media imagery may differ from printed photography in a number of ways. Particularly pertinent in this connection, visual culture theorists have stressed that the dynamic circulation of screen-based digital images changes our visual perception in ways that are much more dependent on the understanding of flows and streams than on seeing pictures on social media as isolated media texts and single images (Hand 2017; Rubenstein & Sluis 2008). While we do single out specific images from Stuart’s Instagram profile as analytical examples, we also recognize that these are part of social media practices that are highly dynamic and intertextual. In Stuart’s case this means that the narrative of weight loss is deeply intertwined with the constant streams of pictures uploaded to Instagram. This intertextuality not only creates links to the continuous framing of herself on her own profile as an instafamous and subcultural micro-celebrity, but it also explicitly positions her in extension of other weight loss, sports and fitness-related imagery on Instagram and other social media, as well as in the broader cultural imagination and representation of ‘becoming fit’ and ‘losing weight.’ Stuart emphasizes that her decision to lose weight was partly a consequence of living with Down syndrome (giving her a low metabolism). Because she wanted to avoid illness and bad health in the future, Stuart says she made a choice to become ‘fit’: ‘It has never been about being Skinny, it has always been about my health. The career that followed was just a bonus’ (Instagram 2018c). However, the narrative of weight loss does more than position Stuart as a body positive activist. As an already culturally acceptable position of bodily transformation, which is the case in popular makeover TV shows (Weber 2009), weight loss helps make Stuart more broadly recognizable as a regular person. As fat scholars have pointed out, this happens because weight loss is a common cultural trope so heavily impregnated with positive value that it is seldom questioned, but almost always celebrated and encouraged (Bacon 2010; Basham et al. 2006; Bordo 2003; Miller 1999). When Stuart repeatedly aligns herself with the positive affective value of weight loss, she is also creating an immediate gateway allowing herself to operate within conventional scripts of bodily normativity. Correspondingly, the visual depictions of Stuart are imbued with familiar tropes of makeover logics such as before-and-after pictures and flattering images of the after-body (Weber 2009). Fatness – much like disability – can be

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thought of as stigmatized state of embodiment to which almost only negative affect sticks. However, unlike disability, fatness is most often viewed as a temporary ‘condition’ within the control of the individual (Harjunen 2009; Maor 2013). Similar to the stigma of addiction fatness is also commonly perceived as an undesirable and changeable bodily state that reflects bad decision-making and ultimately a lack of personal control (Murray 2008). On the one hand, several fat scholars have also underlined that since the fat body is never culturally allowed to occupy the after-position, the before-and-after narrative produces the fat body as unstable, liminal and an incomplete subject always in the process of ‘becoming’ thin (Kendrick 2008; Kent 2001; Levy-Navarro 2009). On the other hand, thinness is celebrated and attributed a long list of positive qualities – or as Ahmed would probably argue: the slide between weight loss and thinness allows the skinny body to be read as a ‘success’ associated with ‘happiness,’ ‘willpower,’ ‘the future’ and ‘agency’ opposite the fat body ‘stuck’ in the past in the form of a sad before-picture. This is also the case with Stuart. In many of the gym pictures, which represent the after-body, Stuart is depicted while exercising or posing with fitness equipment in ways that are appealingly staged. In one image she is portrayed in a confident frontal pose, one hip protruding, gazing directly into the camera, while nonchalantly lifting a dumbbell. She is in full makeup, her hair insouciantly brushed back, and she is wearing tights and a sports bra, ‘casually’ showing off her fit and slender body (Instagram 2018d). In contrast, the before pictures of Stuart show her in rather unflattering ways and thus seem to be chosen in accordance with the underlying and highly naturalized logic of before-and-after imagery. In Stuart’s case, it is implied that her before-body is less attractive than her after-body because she carries more body weight. However, it could also be argued that the before-pictures appear to be less appealing primarily as a question of photographic modes of expression and aesthetics. In two before shots that are juxtaposed in an image montage together with two after-body images (one of which is the one mentioned earlier), Stuart is depicted in non-posing and somewhat trivial situations, one in an outdoor sports arena, and one in a meadow next to a tree. She is wearing ill-fitting clothes, and she doesn’t seem to be aware of the camera (Instagram 2018e). Compared to the after-body images from the gym, the before-pictures are bad quality, low resolution photos, less arranged and stylized, all of which make Stuart’s appearance rather awkward and a bit goofy. The before-body that is not identifiable as the body of a supermodel because it is not slim is also not recognizable as a body made available for the gaze of an audience: it doesn’t know how to pose for the camera, or how to dress in order to present itself professionally, which stands in sharp contrast to Stuart’s celebrified and glossy after-body, a body that is fit and slim, but also polished and well-groomed.

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In addition to a large number of photographs of training and sporting activities, Stuart has also made it a practice to post statements with motivation advice for a healthy life: ‘Forget Skinny, I am training to be a Fit BAD ASS’ (Instagram 2018c). This creates a narrative allowing Stuart to distance herself from an affective framing of the disabled body as fragile and vulnerable by orienting herself towards signs of selfdetermination and strength, which ultimately verify Stuart’s positioning of herself through individualized neoliberal logics of intention and willpower.

Becoming a Fit Body, Becoming a Valuable Brand Stuart’s weight loss story, like so many others,’ not only helps underline an idealized notion of the controlled and disciplined body but also works as a stabilization of (bodily) identity. By constantly stressing her own dedication to living a healthy life and being in good shape Stuart manages to push back on the stereotypical narratives about Down syndrome, and about (intellectual) disability more generally, which is conventionally placed in devalued non-agentive positions (Ellis & Goggin 2015; Goodley et al. 2012) and as conditions of illness and sickness in need for cure (Clare 2017; Siebers 2008). Stuart’s weight loss narrative thus becomes a way of taking control of the body, showing her followers that ‘even’ a body visibly marked by disability – through decisiveness and the will to modulate and transform itself from fat to slim – can be controlled and ‘tamed.’ ‘Too much’ body weight, in turn, becomes a kind of substitute for disability, in the traditional sense of a ‘failed body,’ which (in a makeover logic) legitimizes a necessary bodily transition through which the body undergoes transformation from ‘otherness’ to ‘normalcy.’ First, this happens through Stuart’s choice of making fatness her most central ‘identity crisis’ almost erasing disability in the process. In other words, fatness becomes a substitute for Down syndrome and its pre-assigned role as ‘problematic embodiment.’ Second, this seems to create renewed space for Down syndrome and disability, as (unavoidable) markers of identity, to circulate affect and hereby to be presented in a positive sense as ‘unique’ and desirable characteristics. Instead of framing disability as a problematic fundamental condition, Down syndrome comes to amplify Stuart’s narrative of bodily willpower. The weight loss narrative thus ends up almost safeguarding disability, making Stuart appear as a person who has experienced positive bodily change and therefore has become an authority on the matter. In addition, it is thus worth noticing that Stuart’s critical negotiation of disability identity goes through and is conditioned by other identity borne constructions of bodily normality like that of slimness. Therefore, Stuart’s ability to lose weight is an important part of turning disability into a marketable and valuable product. As positive affects, such as happiness and joy, circulate and manifest themselves on

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her Instagram profile in the form of inspirational captions, big smiles and glamorous work-out pictures, Stuart is able to distance herself from a failed affective economy of disability by downplaying the importance of disability and instead orienting herself towards another bodily ideal: the slim body. In her rewriting of an affective economy of disability, Stuart gains positive value through making connections and ‘sticking’ to already established and validated (healthy) paths, signs (of willpower) and (happy) objects associated with weight loss. In this sense Stuart’s becoming-fit-body is qualified as the object of future happiness and successfulness without touching upon and reinforcing disability as a trope of sickness and unhappiness that would be better off being eradicated, which is otherwise ever so often the case with disability, a narrative Stuart is very well-aware and sceptical of. On yet another stylish image of herself, here posing in the style of a sophisticated philanthropist, she writes: ‘I have down syndrome, it is a genetic condition. It is not a sickness and it does not make me useless or irrelevant’ (Instagram 2018f). Another caption next to the image goes on to state: I hear so many people refer to Down Syndrome as a sickness, I hope with time people understand it is not a sickness as I am not sick and also stop referring to it as a disability and start realising we all have different abilities. (ibid.) By virtue of her subcultural micro-celebrity status, Stuart is able to position herself and to mobilize her authority as a disability and Down syndrome advocate, which translates into a subtle recoding and rewriting of disability (hence: ‘[…] we all have different abilities’). Stuart’s after-body still contains visible signs of disability, which are not as such aimed at being eliminated, but are nonetheless still present in the context of a fashion industry permeated by idealizations of able-bodied models with tall, skinny, symmetrical bodies and faces. Stuart’s ability to subsist within these logics is conditioned by the transgression of the accepted norms of beauty and body standards in the fashion industry and is legitimized by her affective rewriting of Down syndrome. In other words, Down syndrome and disability are, in this context, reiterated as a characteristic ‘out of the ordinary,’ but in a revaluated form. At one and the same time it is what sets Stuart apart from the conventional fashion models, but it is also that which allows her to succeed in the world of fashion. In this sense, Stuart’s ‘upgraded’ version of a healthy Down syndrome body and identity comes to inhabit an unapologetic and distinguished position of well-earned authentic extraordinariness. Unlike the figure of the supercrip who gains positive recognition in spite of a disability, Stuart manages to claim agency and position herself as someone unique and authentic because of Down syndrome.

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Consistent with research into contemporary strategies of branding, Stuart capitalizes on her ‘uniqueness’ as a form of authenticity, and as a flexible and entrepreneurial self, which exists in constant tension with expectations about coherency and predictability (Gershon 2016). Interestingly, this tension allows for Stuart to manage to advocate for Down syndrome and to turn her disability status into a commodity and a brand, in which the bridging of commercialized ascriptions of value and disability is neatly aligned. One could, in fact, say that disability identity becomes the qualifying criterion for an effective branding. Once in control of her body, in the sense that Stuart now embodies a long line of normative female beauty ideals and has rid herself of fat stigma, the return to disability seems safer, perhaps even advantageous. Instead of a sign of ‘sickness’ or ‘lack,’ disability is allowed to inhabit the position as that ‘something extra,’ which gives Stuart edge and makes her stand out: ‘My extra chromosome makes me extra supermodel’ as an image caption reads (Instagram 2018g).

Closing Remarks: The Capitalization of Disability In our pairing of Stuart’s celebrified self-commercializing strategies with Ahmed’s concepts into an affective economy of disability, we have through the narrative of weight loss on Stuart’s Instagram profile sought to highlight how it is possible to turn Down syndrome and disability identity into a valuable personal brand. Stuart’s gain (as well as our analytical focus) is not primarily concentrated on monetary capital, but rather is occupied with the vindication of disability identity as a form of social and emotional capital. However, at the same time, it is not possible to separate Stuart’s social media practice entirely from questions about monetary value. As the creator of a highly distinct and capitalizable brand of Down syndrome and disability, Stuart is given the possibility to exchange her accumulated positive value into goods in the form of advertisement, sponsorships, travels and a luxury lifestyle. The confluence of commodification and disability advocacy on social media makes up a new and relatively unexplored field of tension in both disability and media studies. Even without a large number of precedent cases or comparable positions, what becomes clear through our analysis of the Stuart case is the emergence of new forms of disability representations, in which minority identity and status may become valuable assets in the creation of effective branding strategies. However, disability as a category of capitalization is not something that is entirely new. Hence, Stuart’s self-commercialization does not exist in a vacuum. Historically there have been remarkable instances of ways in which disability has been capitalized and monetized and several disability studies scholars have scrutinized the ways in which disability has been explicitly exploited for economic gain (Bogdon 1988; Clare 1999; Garland-Thomson

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1996, 1997). The dime and freak shows of the nineteenth century are historical examples of how entrepreneurs and showmen made money from the bag of ‘extraordinary bodies.’ The financial exploitation didn’t end with the freak show however: The extraordinary body shifted from its earlier visible, public position as strange, awful, and lurid spectacle to its later, private position as sick, hidden, and shameful, producing finally the fully medicalized freak who after 1940 was removed from the stage platform to the teaching hospital amphitheatre, the medical text, and the special institution. (Garland-Thomson 1997, 78) It may have started with priests, entrepreneurs and agents, desperate or greedy families, philosophers and doctors showing off and profiting from the ‘enfreakment’ of the disabled body (Garland-Thomson 1997, 57), but it didn’t end with them. Today’s growing self-help literature in the genre of body improvement and talk shows and television programmes exhibiting extraordinary bodies are contemporary examples of how individual entrepreneurs, large businesses and industries profit from people’s desire, not only to live up to normative scripts of embodiment but also to earn recognition, and possibly fame and fortune. In the meantime, what seems to be different on social media from both earlier and present times’ exploitative cashing in on disabled subjects as curiosities and freaks is the reasoning that self-branding practices that are carried out by individual people, such as Stuart’s, are often perceived as being detached from exploitative arrangements. Online and social media still thrive on their early image of being democratic outlets for creative fulfilment and peer-production: ‘free from corporate and government constraints’ (van Dijck 2013, 15). However, as internet celebrities and influencers (Abidin 2018) have made their way into the scenes of social media, it also becomes more obvious that commercial value must be considered an inevitable component in everyday media practices. The wider issues that arise from our analysis of Stuart’s celebrified self-representation on social media thus show that the entanglements of commercialized platform logics and identity politics demand us to refine our analytical apparatuses in order to understand the ways in which different forms of capital circulate and manifest. By activating an analytical framework of affective economies we have introduced a productive lens through which it is possible to map out the important mechanisms of disability self-representation and advocacy on social media as processes of affective revaluation. Thus by paying analytical attention to the performative nature and circulation of affects on social media platforms, concepts such as celebrification and Instafame become visible and recognizable as scripted doings while disabled embodiment in similar ways emerges as ongoing processes of becoming rather than inherent identities.

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Acknowledgement Parts of the analysis in this chapter built on research conducted for a PhD project financed by The Danish Council for Independent Research and Roskilde University (2015–2018). A special thank you to Tobias Raun, who was originally supposed to co-author this chapter, for contributing with invaluable insights in the initial stages of thinking and writing.

Notes 1

2

It is important to note that not all ‘extra chromies’ fall within disability. While an additional chromosome among males within medical discourse has been labelled ‘Klinefelter syndrome’ or simply ‘47XXY,’ its status as disability is contested. While some 47XXY may want to celebrate their additional chromosome through political fashion, such as the T-shirt promoted by Stuart on Instagram, others may actively be fighting this positioning. Like Ahmed we don’t distinguish between feelings, affect and emotions. For a more elaborate clarification see Ahmed (2010, 230).

References Abidin, C. 2016. “‘Aren’t These Just Young, Rich Women Doing Vain Things Online?’: Influencer Selfies as Subversive Frivolity.” Social Media + Society: 1–17. DOI: 10.1177/2056305116641342 Abidin, C. 2018. Internet Celebrity: Understanding Fame Online. Bingley: Emerald Publishing. Ahmed, S. 2014 [2004]. The Cultural Politics of Emotion. Edinburg: Edinburgh University Press. Ahmed, S. 2010. The Promise of Happiness. London: Duke University Press. Bacon, L. 2010. Health at Every Size: The Surprising Truth about Your Weight. Dallas: BenBella Books. Basham, P., G. Gori and J. Luik. 2006. Diet Nation: Exposing the Obesity Crusade. London: Social Affairs Unit. Beer, D. 2013. Popular Culture and New Media. The Politics of Circulation. London: Palgrave Macmillan. Bogdon, R. 1988. Freak Show: Presenting Human Oddities for Fun and Profit. Chicago: University of Chicago Press. Bordo, S. 2003. Unbearable Weight: Feminism, Western Culture, and the Body. Berkeley: University of California Press. Clare, E. 1999. Exile and Pride: Disability, Queerness, and Liberation. New York: South End Press. Clare, E. 2017. Brilliant Imperfection. Durham: Duke University Press. Ellis, K. 2015. Disability and Popular Culture. Focusing Passion, Creating Community and Expressing Defiance. Farnham: Ashgate. Ellis, K. 2016. Disability Media Work. Opportunities and Obstacles. London: Palgrave Macmillan. Ellis, K. and G. Goggin. 2015. Disability & the Media. London: Palgrave Macmillan.

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Erevelles, N. 2014. “Becoming Disabled: Towards the Political Anatomy of the Body.” In Disability, Human Rights and the Limits of Humanitarianism, edited by M. Gill & C.J. Schlund-Vials, 219–233. Farnham: Ashgate. Facebook. 2018. Available at: www.facebook.com/pg/madelinesmodelling/ about/?ref=page_internal (accessed 8 May 2018). Fairchild, C. 2007. “Building the Authentic Celebrity: The ‘Idol’ Phenomenon in the Attention Economy.” Popular Music and Society, 30(3): 355–375. Garland-Thomson, R., ed. 1996. Freakery: Cultural Spectacles of the Extraordinary Body. New York: NYU Press. Garland-Thomson, R. 1997. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press. Garland-Thomson, R. 2009. Staring: How We Look. Oxford & New York: Oxford University Press. Gershon, I. 2016. “‘I’m not a Businessman, I’m a Business, Man’. Typing the Neoliberal Self into a Branded Existence.” Hau: Journal of Ethnographic Theory, 6(3): 223–246. Goodley, D., B. Hughes and L. Davis, eds. 2012. Disability and Social Theory. Hampshire: Palgrave Macmillan. Hand, M. 2017. “Visuality in Social Media: Researching Images, Circulations and Practices.” In The SAGE Handbook of Social Media Research Methods, edited by L. Sloan & A. Quan-Haase, 217–231. London: Sage. Harjunen, H. 2009. “Women and Fat: Approaches to the Social Study of Fatness.” PhD dissertation, University of Jyväskylä. Hickey-Moody, A. & V. Crowley. 2010. “Disability Matters: Pedagogy, Media and Affect.” Discourse: Studies in the Cultural Politics of Education, 31(4): 399–409. Instagram. 2 June, 2017. Available at: www.instagram.com/p/BU1QETNBvco/? hl=da&taken-by=madelinesmodelling (accessed 8 May 2018). Instagram. 15 October, 2018a. Available at: www.instagram.com/p/Bo9q87mA vQs/ (accessed 17 January 2019). Instagram. 29 October, 2018b. Available at: www.instagram.com/p/Br_AxA An215/ (accessed 17 January 2019). Instagram. 5 February, 2018c. Available at: www.instagram.com/p/Bey77b_ B7K-/?hl=da&taken-by=madelinesmodelling_ (accessed 17 January 2019). Instagram. 3 February, 2018d. Available at: www.instagram.com/p/BeucewYhN MD/?hl=da&taken-by=madelinesmodelling_ (accessed 17 January 2019). Instagram. 4 February, 2018e. Available at: www.instagram.com/p/BewSHvjhG 17/?hl=da&taken-by=madelinesmodelling_ (accessed 17 January 2019). Instagram. 16 April, 2018f. Available at: www.instagram.com/p/BholaN7hsgP/? hl=da&taken-by=madelinesmodelling_ (accessed 17 January 2019). Instagram. 22 March, 2018g. Available at: www.instagram.com/p/BgnuigzgSq 2/?hl=da&taken-by=madelinesmodelling_ (accessed 17 January 2019). Jerslev, A. 2014. “Celebrification, Authenticity, Gossip. The Celebrity Humanitarian.” Nordicom Review, 35 Special Issue: 171–186. Jerslev, A. 2016. “In the Time of the Microcelebrity: Celebrification and the YouTuber Zoella.” International Journal of Communication, 10: 5233–5251. Kendrick, R. 2008. “We Can Change the Face of this Future.” Australian Feminist Studies 23: 389–400.

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Kent, L. 2001. “Fighting Abjection: Representing Fat Women.” In Bodies Out of Bound Fatness and Transgression, edited by J.E. Braziel & K. LeBesco, 130–150. Berkeley: University of California Press. Levy-Navarro, E. 2009. “Fattening Queer History: Where Does Fat History Go from Here?” In The Fat Studies reader, edited by E.D. Rothblum & S. Solovay, 15–24. New York: New York University Press. Liddiard, K. 2014. “Liking for Like’s Sake – The Commodification of Disability on Facebook.” Journal of Developmental Disabilities, 20(3): 94–101. Littler, J. 2018. Against Meritocracy. London: Routledge. Madelinestuartmodel. 2018. Available at: www.madelinestuartmodel.com/ madelines-story/ (accessed 17 January 2019). Maor, M. 2013. “Stories that Matter: Subverting the Before-and-After WeightLoss Narrative.” Social Semiotics, 24(1): 88–105. Marwick, A. 2013. Status Update: Celebrity, Publicity and Branding in the Social Media Age. New Haven: Yale University Press. Marwick, A. 2015. “Instafame: Luxury Selfies in the Attention Economy.” Public Culture, 27(1): 137–160. McRuer, R. 2006: Crip Theory: Cultural Signs of Queerness and Disability. New York: New York University Press. Miller, W. C. 1999. “How Effective are Traditional Dietary and Exercise Interventions for Weight Loss?” Medicine and Science in Sports and Exercise, 31(8): 1129–1134. Murray, S. 2008. “Normative Imperatives vs Pathological Bodies: Constructing the ‘Fat’ Woman.” Australian Feminist Studies, 23(56): 213–224. Preston, J. 2016. The Fantasy of Disability: Images of Loss in Popular Culture. London: Routledge. Raun, T. 2018. “Capitalizing Intimacy: New Subcultural Forms of Micro-Celebrity Strategies and Affective Labour on YouTube.” Convergence: The International Journal of Research into New Media Technologies, 24(1): 99–113. Rubenstein, D. & K. Sluis. 2008. “A Life More Photographic.” Photographies, 1(1): 9–28. Senft, T. 2008. Camgirls, Celebrity and Community in the Age of Social Networks. New York: Peter Lang. Senft, T. 2013. “Microcelebrity and the Branded Self.” In A Companion to New Media Dynamics, edited by J. Hartley, J. Burgess & A. Bruns, 346–354. Chichester: Wiley-Blackwell. Siebers, T. 2008. Disability Theory. The University of Michigan Press. Snyder, S. & D. Mitchell. 2000. Narrative Prosthesis. Disability and the Dependencies of Discourse. The University of Michigan Press. Trevisan, F. 2017. Disability Rights Advocacy Online. Voice, Empowerment and Global Connectivity. New York: Routledge. van Dijck, J. 2013. The Culture of Connectivity: A Critical History of Social Media. Oxford: Oxford University Press. Waldschmidt, A., H. Berressem & M. Ingwersen. 2017. Culture – Theory – Disability. Encounters between Disability Studies and Cultural Studies. Bielefeld: Transcript Verlag. Weber, B. 2009. Makeover TV. Selfhood, Citizenship, and Celebrity. Durham: Duke University Press.

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Losing Someone Like Us Memetic Logics and Coping with Brain Tumours on Social Media Samira Rajabi “Healthy people can become sick people in the blink of an eye. #BTSM” (HYHUTriangle 2017)

Introduction Brittany Maynard was dying when I first encountered her. As an active member of a monthly digital community formed on Twitter dedicated to wrestling with the complex experience of a brain tumour diagnosis, I was not surprised when I was sent a YouTube video of Maynard. I hesitantly pushed play, knowing the vicarious suffering of what I was about to see would be viscerally confronting. I was speechless as I watched Maynard’s swollen face, likely a by-product of her cancer treatment, look directly at me through my phone screen. At just 29 years old, Brittany Maynard was facing the end of her life and in this video, she passionately made the case that she should be granted some agency in the process of dying from a glioblastoma – an aggressive and often deadly brain tumour. Sponsored by the US non-profit organization Compassion & Choices which aims to improve patient rights at the end of their life, Maynard uses this video to explain her decision to end her life. Looking past the camera and thus looking past me, in a soft voice she says, ‘The thoughts that go through your mind when you find out you have so little time is everything you need to say to the people you love’ (CompassionChoices 2014). I knew the Brain Tumor Social Media (#btsm) Twitter community understood what Maynard meant when she said this. Originally posted on 6 October 2014, the video captured the national imaginary and it was mediated and re-mediated over and over again. I knew the significance the video held for my immediate digital community, but I was not prepared to witness its national resonance and the way memetic logics enabled the story to proliferate and take on new life. In my various social media feeds, I saw still frames of the video remixed to reflect various sides of the arguments in the ‘death with dignity’ debates. Beyond the debates, empathetic sufferers who’d lost loved ones to a multitude of

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cancers offered condolences and prayers. For different audiences Maynard embodied different things, for some the travesty of cancer, for others the right to ‘play God,’ and for others still, a sobering look at their own mortality. In her virality, given the controversy surrounding the legality of her decision to die, Maynard had become a meme – her image, her likeness, her words were all recycled, remixed and reshared to create new meaning. Later that month, while buying my groceries, I saw a familiar face staring at me from a People magazine. I walked closer to find that Maynard, like many other memetic figures before her, had emerged from social media and into mainstream press. A photograph of her staring directly into the lens of the camera was captioned in big white letters, ‘My Decision to Die.’ On 2 November 2017, a day after Maynard opted to take the prescription drugs that would end her life, Liz Salmi, one of the creators of the community tweeting under the hashtag #btsm, during a monthly Brain Tumor Social Media (#btsm) Chat posted the following question: ‘Did anyone feel like Brittany was being exploited for the ‘death w[ith]/ dignity’ legislative cause?’ (TheLizArmy 2014). Responses to the prompt varied but captured a certain ambivalence on the part of the community of brain tumour patients. Notably, even while she did not mention the content of the YouTube videos of Maynard, Salmi re-mediated them, imbuing them with new meaning, layering the meaning they convey with ideas of exploitation, inscribing on Maynard’s image discussions of power, ability, and choice. In remediating Maynard’s story and layering it with new meanings using the hashtags and imagery associated with the Brain Tumor Social Media Tweet chats, Salmi memed Maynard making her a vehicle through which meaning was made for those individuals whose health, ability and meaning making schema had been undone by the trauma of a brain tumour. There is a space between experience and the representation of experience. Popular culture, from news, television dramas and films to digital and social media, is full of representations of illness. The people who participate in the #btsm community on Twitter attempt to fill this space between their experiences and the way the experience of illness is frequently represented back to them on mediated platforms. This chapter bridges disability studies and media studies together through the lens of memetic logics to explore the disabling helplessness of traumatized communities and the way platform affordances and hashtags are mobilized by loosely formed digital communities to make sense of moments of suffering. These digital communities engage with their representations by making and remaking ways of knowing their sick bodies or the sick bodies of their loved ones. Consequently, the communities they organically create straddle the boundaries between medical and social, they are both emotionally and rationally inflected, and they are, above all, spaces for suffering bodies who go online to

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negotiate meaning after traumatic events, to represent themselves, using the unique affordances of digital platforms. In this chapter I trace the way Brittany Maynard’s story, benefitting from platform affordances and memetic logics, proliferated, spread, was mediated and shared in the Brain Tumor Social Media Community on Twitter. In so doing, I look at how Maynard’s story, and digital media more broadly, allows for the mediation and re-mediation of content around trauma and disability in ways that are productive in reconstituting broken meaning making schema or in remaking new schema with which to guide one’s life – and those new mediations might resist normative frameworks of how sick bodies are allowed to exist.

Bridging the Literature: From Trauma and Media to Disability Studies Trauma dismantles meaning making schema (Janoff-Bulman 1989, 121). Meaning making schema are those schemas that govern day to day experience and inform how individuals inhabit their social worlds (Janoff-Bulman 1989, 115). A variety of assumptions make up meaning making schema; these assumptions that are stored in memory and often go unquestioned are cultural, social and political. Traumatic experiences break these schema and function to dislodge assumptions of the way the world works. In this way, traumas demean the status quo individuals and groups build in their lives and force those who suffer from them to make new meanings or remake their previous meanings in ways that allow their new embodied experiences to make sense in the story of their lives. The rapid proliferation of digital media, especially social media, has opened spaces through which to negotiate meaning, particularly for sufferers of trauma who may feel misrepresented, erased or disenfranchised in mainstream popular culture and in legacy media formats. Meaning making in spaces like this offers crucial coping mechanisms for traumatized bodies enabling them to make an ‘intervention’ in their distress and place that distress in a framework that enables them to live a positive life, even as that life co-exists with the turmoil of their trauma (Lee 2008, 782). In digital media, on social media sites like Twitter, hashtags are used to bridge connections across disparate groups. As users inhabit certain digital, social spaces for long enough they become familiar with hashtags that loosely form communities of interest. This chapter examines three hashtags on Twitter that unify communities that are brought together based on a shared experience of suffering – those suffering with or caring for patients who have brain tumours. The hashtags #btsm (Brain Tumor Social Media), #braintumorthursday and #BrittanyMaynard bring disparate people together based on a shared experience. I argue in this chapter that these hashtags, and the accordant media artefacts

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they circulate, function based on memetic logics, or what Milner (2016) identifies as the qualities of reappropriation, multimodality, resonance, spread and collectivism. These logics, as the processes that allow digital media to memetically spread into culture, offer a playfulness which enables meaning production for traumatized subjects. Milner (2016) alongside Willett, Robinson, and Marsh (2009) notes that play, just like memetics, doesn’t indicate frivolity or light-heartedness. Rather, playfulness indicates the ability to engage creativity to collectively intertwine ideas, concepts, media artefacts and use them in the negotiation of and performance of identity and creation of a hybridized culture (Milner 2016, 2; Willett, Robinson, and Marsh 2009, 64). Digital platform affordances enable often Othered bodies to engage representations of their bodies differently. In this way, the hashtags and the narratives of suffering people flag using the hashtags become inextricably linked, producing new articulations of what it is to be sick, and what it is to be sick online. This analysis explores first how Brittany Maynard engaged in digital advocacy for the right to die using digital affordances, followed by an analysis as to how those impacted by brain tumours, specifically Twitter users with brain tumours or who had close family or friends with brain tumours, mediated their own suffering through her story using the hashtag #BrittanyMaynard. Maynard was a 29-year-old woman with a glioblastoma, a cancerous, and often lethal, brain tumour. Her influence online came from her partnership with Compassion & Choices, where she advocated for medical aid in dying, and opted to exercise her right as a patient to ‘die with dignity’ as her condition worsened (CompassionChoices 2014). Maynard’s case was heavily mediated, and her name and advocacy thrust both medical aid in dying debates and brain tumours into the national spotlight in the United States. Thus, in 2014, the hashtags #btsm and #braintumorthursday overlapped with the story of Maynard and many members of these communities opted to mediate their own traumas through the narrative laid out via YouTube, social media and in popular press about Maynard’s end of life decision.1 This case, my access to this case, and the way it was mediated offer scholars of disability, trauma and media an opportunity to discover how individuals contending with their own mortality engage their own bodies in digital space, particularly as they relate to broader discussions in mainstream media about what it means to be sick, and what kind of sick bodies should live and which should die. To understand how these hashtags function using memetic logics to facilitate meaning making online, I trace a variety of literature that relates to trauma and disability studies and bring it in conversation with literature around the playful, as-if environments afforded to people through the capabilities of technological platforms. Trauma, here, is taken to be disabling – an assertion I explore more fully in the next section. Given this assertion, I examine how the language of feminist

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disability studies is useful for analysing illness and trauma, specifically when looking at social media sites of meaning making. In looking at testimony of trauma in social media, these theories allow us to ask if users are subverting or normalizing notions of disability, victimization and sickness with the meanings they mediate, re-mediate and proliferate through these hashtags. Janoff-Bulman (1989) notes that traumatic experiences are, in part, those life events that lead to ‘anxiety, confusion, helplessness, and depression’ (113). In addition, Herman (1997) notes that traumatic experiences violate the social contract and create psychological distress (1, 7). Terminal illnesses betray the contract bodies make with their social worlds in that they bring forward the visceral and confronting reality of death in ways that Western society seldom prepares people for. Traumatized people are made to suffer because of what they have experienced, a suffering that forces a feeling of disconnection from their own bodies, social environments and the present (Herman 1997, 35). Trauma caused by illness interrupts the body’s ‘insistence on meaning’ that is experienced not just through medical facts but the way the body socially and physically experiences and feels illness (Kirmayer 1992, 325). Illness is both medically and socially traumatic because of the way it challenges the frameworks people have used to guide their body through life. The assumptions and frameworks that tend to guide life before trauma dismantles it generally have to do with avoidance of the ‘tragedy of life’; in other words people live their lives according to assumptions that death and dying are far away from them and that mortality is a primarily medical, not social, experience (Gawande 2014, 7). Traumatic experience, particularly illness, breaks our engagement with our world. ‘In sickness we confront the inchoate. Bodily suffering distorts the landscape of thought, rendering our previous constructions incoherent and incomplete’ (Kirmayer 1992, 329). Trauma and illness function socially like disability, as trauma forces people’s lives into discourses that ‘contain and fix dis/abled bodies’ (Chen cited in McRuer 2018, 22). In scholarship, trauma must be taken as disabling in the ways it shatters constructed notions of normal. Traumatized subjects, as disabled subjects, see through problematic constructions of ‘normal’ because of their social location. These subjects are forced to make meaning around their embodied experience in order to navigate their physical body in the world, to carve out space for their bodies to exist in a society that largely erases and hides disabled and sick bodies. These meanings may be subversive, speaking back to power structures, or they may inadvertently reinsert the trauma survivors into systems of power (Edkins 2003, 9). Indeed, prominent medical discourses of recovery and therapy attempt to fix trauma sufferers in ways that force them back into normative frameworks (Edkins 2003, 9). Rothe (2011) articulates the way popular trauma culture has become a media spectacle, erases

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the socio-political context and reduces them to a body in pain (5). Subjects online, however, are able to narrate their suffering in ways that enables them to remember and experience collectively, thus repositioning themselves and their suffering within the larger socio-political context (Alexander 2004, 8; Rothe 2011, 158) Disability studies need to be applied to trauma for several reasons. Trauma, at its core, causes the suffering subject to become disabled, both physically and socially. Though these disabilities may be invisible on the body, not all sickness can be seen, the ramifications of them cause the suffering body to be dislodged from social worlds. To understand the way digital sufferers negotiate their embodied suffering in a disembodied online space, trauma and its accordant meaning making need to be separated from medical discourses and seen as multiple, complex and situated in what McRuer (2018) calls a ‘global crip imagination’ (24). Refusing medicalization of trauma means that trauma needs to be understood from the level of social signification. This gesture, adapted from Linton’s disability studies, reframes trauma as ‘a designation having primarily social and political significance’ (Linton 1998, 2). Edkins (2003) argues that ‘in contemporary culture victimhood offers sympathy and pity in return for the surrender of any political voice’ (9). Those who go online to negotiate trauma, however, use the affordances of digital platforms to recuperate that voice through practices of producing meaning. These gestures are micro-political tactics that are invested in situating the disabled body as ‘not a discrete object but rather a set of social relations’ (Davis 1995, 11). Trauma is always embodied, illness is always embodied and disability is always embodied. Even when the location of suffering is not isolated to the physical body, suffering is lived, felt and experienced through the body. In an embodied politics of trauma, trauma must be considered disabling. I concretely situate this research within feminist disability studies because of its investment in resisting narratives of Othered bodies, such as disabled or female bodies, as lacking. Pain and suffering, because of their visceral nature, are unshareable, destroying language as they destroy meaning making schema (Scarry 1985, 5). Feminist disability studies divorce disability from its social construction as a ‘natural state of corporeal inferiority’ and instead identify and contest the way discourses of disability socially mark certain bodies, ‘legitimating an unequal distribution of resources, status, and power’ (Garland-Thomson 2002, 5). Moreover, an attention to embodied suffering represented by agentic users in media allows research to ‘move from mere discursive intervention to deep interrogation of the material constraints that give rise to the oppressive binaries of self/other, normal/abnormal, able/disabled, us/they,’ to which I would add sick/well and traumatized/untraumatized (Erevelles 2011, 119). Feminist media studies offer a bridge between feminist disability studies and meaning making practices through digital media as a

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response to trauma. Feminist media studies recognize the substantial role of mediation in the way ‘relations of power are made and re-made’ (McRobbie 2004, 262). Durham (2011) argues that ‘power differentials translate to an inability to make oneself heard’ (54). These power differentials are mediated, digital media platforms that afford users an opportunity to play with the constructedness of socially constituted identities in ways that produce new meanings, build on existing meanings and possibly transgress boundaries of what it means to materially live in a disabled body. The playful, as-if space of the digital world lets people imagine new discursive possibilities for their offline, material existence. Social networks, such as Twitter, are used ‘as a way of performing and perhaps playing with’ identity (Willett, Robinson, and Marsh 2009, 64). The space produced in digital space is a third space, between purely online space and offline space, one in which ‘the meaning of cultural objects is negotiated and in which dominant discourses can be contested’ (Willett, Robinson, and Marsh 2009, 64). Much like Bhabha’s (1994) third space this in-between space manifested in online engagement with social media is a space where new ‘strategies of self-hood’ emerge, overlap with, and displace previous ways of knowing and domains of cultural difference (2). McRuer (2010) urges disability studies to be capacious in analysis of disability, such that disability studies would be ‘an epistemological field that makes it possible to know about or intervene in any political or cultural issue’ (164). Exploring illness narratives online as trauma and bridging the language of trauma studies, disability studies, feminism and media studies allow for an analysis that questions the categories of ability and disability. In so doing this scholarship accounts for what McRuer (2010), borrowing from Puar, terms the ‘the uneven biopolitical incorporation’ of bodies, targeting some for life and others for death (171). In taking up McRuer’s call that disability studies recognize the relationship between the disabled subject, their survival and the state enables this work to ask questions about ‘the risks that always attend our most urgent projects’ and to recognize that the affirmative identities expressed in digital communities, even while generative, in part reinforce state systems of control. To attend to these questions, I turn to Balkin (2004), who notes that in looking at digital speech, such as testimonies in social media, it is important to ‘focus on salience’ and recognize what about the human condition technology foregrounds, emphasizes or problematizes (2–3). For traumatized bodies, social media offer a way to re-enter society through the creation of meaning, even as that meaning might be situated in systems of domination. Social media offer a paradigm shift in the way meaning has been mediated, re-mediated, proliferated and changed over time. The boundary between ‘the original and a copy’ has been blurred (Piekot 2012, 192). Digital mediations in social media tend to build upon one another; hashtags start with one user and proliferate, the intended meaning

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shifting with each user who uses the hashtag. This form of spreading and replication follows a mimetic logic of ‘polyvocal public participation’ (Milner 2016, 111). According to Milner (2016) memetic media function based on several logics such as resonance, spread and collectivism that go beyond just the use of a hashtag to categorize and share information. I argue, hashtags become memetic when users reappropriate them to weave their personal narrative into the larger conversation, offering meanings that form ‘aggregate texts, collectively created, circulated, and transformed by countless cultural participants’ (Milner 2016, 2). Milner (2016) is also careful to note that memetics are not just about the memes themselves, but the grammar of the social processes that enable them to proliferate. Here, hashtags around brain tumours, and the testimonies they flag, are the media artefacts that proliferate, making meanings that, in the data set, enable transformative reappropriation of meaning, just by entering possibly resistive narratives into cultural circulation with dominant discourses. Though not all the possible uses of hashtags foster expressions of resistive discourse that undoes marginalizing ways of knowing, memetic logics offer that possibility to users – a possibility that Twitter users in the #btsm community latch onto. Like the memetic, originally derived from Dawkins evolutionary biology that used the term meme to capture the ‘natural human spreading, replication, and modification of ideas and culture’ (Chen 2012, 7), public participation, like that surveyed in this chapter, follows a logic of ‘reappropriation, collectivism, and spread’ (Milner 2016, 111). I argue here that much of what is shared online follows this memetic logic, in which the meaning of even a hashtag is based on its previous instantiations. Knobel and Lankshear (2007) challenge us to recognize memes as including such things as ‘popular tunes, catchphrases, clothing fashions, architectural styles, ways of doing things, icons, jingles, and the like’ in the way they reorient audiences and producers of mediated content towards cultural information (199). Much of what is shared in social media is replicated and transformed as it is shared because of the unique location, sensibilities, attitudes, identities and networks of the sharers. Just as discourse is polyphonic, the production of discourse in digital space is ‘created by a multiplicity of unfinished texts overlapping’ (Milner 2016, 111). These texts are more than hashtags that serve to organize and connect, rather the layered meanings produced in the proliferation and re-vamping of ideas that create hybrid texts that are uniquely understood by particular communities. Returning to Milner (2016), he notes: ‘media texts become memetic when they connect with enough participants to inspire iteration after iteration from a fixed premise’ (29). As such, hashtags can become memetic, but do not necessarily achieve this status. With each tweet that accompanies a hashtag the meaning of that hashtag morphs, shifts and goes through a process of becoming what it is. Like internet memes, hashtags and their accompanying content are

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‘dislocated’ in time and space, and are defined based on who is seeing it, in the moment in which it is seen. When considering trauma, the dislocation of the media artefact becomes even more important. Trauma itself is a trans-temporal, transspatial experience that divests the suffering subject from time and space as they had come to understand it, partitioning memory from chronology (Bennett 2005; Cvetkovich 2003; Edkins 2003). To remember and articulate trauma is never to articulate it as it actually happened, rather it is to ‘seize hold of a memory as it flashes up at a moment of danger’ (Fassin and Rechtman 2009, 16). Given the visceral way trauma dislocates itself, meaning making through simple affordances, such as hashtags online, offers the trauma sufferer a space through which to negotiate this disjuncture between social worlds, the legibility of their new body and the way they materially inhabit space. Jackson (1983) tells us that ‘Culture has thus served as a token to demarcate, separate, exclude and deny’ (328), determining that which is natural and that which is allowed to exist. Digital sufferers use digital meaning making to redraw these boundaries that subjugate their bodies, diminishing the purported organic order of what is natural and normal and carving out space through digital engagement. The following section explores the way #btsm, #braintumorthursday and #BrittanyMaynard attempt to mediate suffering and make meaning, exploring what normative and resistive gestures each hashtag makes and the subsequent material effects of mediating illness, disability and trauma online.

Meme-ing and Re-mediating for Tactical Meaning Making Methods This data set is comprised of YouTube videos and tweets collected from 2014 to 2018 of the hashtags #btsm (Brain Tumor Social Media), #braintumorthursday and #BrittanyMaynard. These tweets were collected using targeted searches via Twitter’s integrated search function. This purposive sample looked for tweets that were posted by either patients or caretakers in the brain tumour community, particularly as they related to Brittany Maynard. Approximately six YouTube videos were analysed, and 110 tweets were collected from all of the hashtags combined and they were examined in depth using Rose’s (2011) discourse analysis that focuses on the site of the image, site of production and site of reception. Many of these tweets included links to images, blog posts and articles in which case those items were included as a part of the data set as well. In addition, to add an audience component to the study, I use mixed methods, rounding out the textual analysis using a group interview. I interviewed three active Twitter users in the #btsm community, Charlie

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Blotner and Liz Salmi, the creators of the #btsm and its monthly tweet chats, as well as Adam Hayden, a brain tumour patient and activist for brain tumour awareness and healthcare legislation. 2 I interviewed all three people at the same time via Skype to determine if the findings of the discourse analysis were consistent with their intent in producing the digital media artefacts that were studied for this chapter. The purpose of approaching this research with both a discourse analysis and interviews is to determine how intent in posting is captured in the outcome of their posts – the subsequent conversations, community and thus the discourse they contribute to. The interview helps the reader determine why these participants opted to negotiate their suffering in and through the #btsm Tweet chats, as well as why and how they engaged the very publicly mediated narrative of Brittany Maynard.

Making Space for Suffering It is meaning that invests one’s life with purpose (Lee 2008, 779). Traumatic diagnoses of tumours, cancers, or the like force an ‘existential plight’ through confronting individuals and their families with the ‘inevitability of death’ (Lee 2008, 780). This existential plight is one in which meanings that have guided routines of everyday life no longer serve their function in the face of death. The people faced with this plight must make new meanings to survive. Though meaning is ‘vague and boundless’ in nature, it is useful in allowing bodies with even the most profound suffering to strive towards goals, imbuing their lives with purpose and offering a new schema and ordering of life’s meanings through which they can build routines and live a life that provides satisfaction, happiness and productivity (Emmons 2005, 734). What this process looks like in practice is highly dependent on context but, as the following pages will demonstrate, many patients and caregivers, disabled by illness and traumatized by their diagnoses, use digital affordances to make meaning in social media spaces. Particularly poignant are those who shared ‘tumor types’ with Maynard, who spoke directly to her, collapsing their experience into hers while expressing grief, fear and sadness, or still others contemplating a similar decision between treatment and death. Brittany Maynard’s Story, as Told by Digital and Social Media I started this chapter with the viscerally confronting experience I had, as a brain tumour sufferer, watching a woman not much different from me, grappling with a tumour that would have dire consequences for her body. The video, which details Maynard’s plans as to where and how she would die, who would be with her, and who she was and what the brain tumour had done to change her world, serves as a simultaneous

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expression of agency for a disabled body while also working as an advocative tool situated within a medical system that functions through a neoliberal logic – the video was a promotional piece meant to mobilize activism in favour of death with dignity laws (CompassionChoices 2014). This is clearest when the final black screen appears, and in white lettering the video reads, ‘At present, only five US states allow terminally ill patients the right to die with dignity. A movement is underway to expand access, so that no American has to endure prolonged pain and suffering’ (CompassionChoices 2014). This video has over 12 million views (CompassionChoices 2014). Rose (2011) positions three important sites for discourse analysis of visual media artefacts. The site of the image, in this case, is Brittany Maynard’s likeness, positioned within a widely contested political and personal decision about the progression of her illness and her desire and right to choose how to live or die. The site of production of her image complicates the discursive work these YouTube videos do, in that the images were produced specifically for Compassion & Choices advocacy campaign. While the YouTube videos featuring Maynard purportedly do the work of narrating her complicated testimony of trauma and resistive navigation of her diagnosis, they fundamentally serve to produce highly political ideas around the right to live and die – or as termed in the videos, ‘death with dignity’ (CompassionChoices 2014). The YouTube portrayals of Maynard become increasingly complicated when it comes to the site of reception, as the fluid spaces in which audiences engaged them displayed that such emotionally charged content could not be read without an interrogation of, and perhaps conflation of, the self. Often, brain tumour patients, caregivers and others invested in the debates around the right to death with dignity commented on Maynard’s videos through an engagement with their own experiences, thus making a meme of Maynard by inextricably tying their stories together online. Once users had begun to engage in comments about Maynard’s choice the image and its production became discursively fixed to their reception on various social media platforms. Affective mediation enables suffering bodies engaged in digital activism to do work that functions both in their favour and to their detriment. Maynard’s unequivocal attention to dying bodies forefronts them in a way that representations of illness rarely do while still reinforcing normative ways of understanding illness. In de-medicalizing the discourse of trauma through testimony and seeing trauma as a social condition in which non-normate, or in this case, dying bodies are often erased in society, social constructions around what constitutes a valuable life become more apparent. The meaning perpetuated in this video is one that advocates for a cure and an overcoming of one’s circumstances. Maynard’s narrative in the video described as well as in many others produced by mourners and the organization Compassion & Choices

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after her death conveys that to live in any valuable sense, a body must be healthy. I am not arguing here in favour or in opposition to end of life rights. In parallel I am not advocating a person should choose to live in pain either. Instead, what I am arguing is that social constructions of representation and perception that place sick bodies in categories of diseased and defective marginalize those bodies for them to be cured. While patients struggling with debilitating tumours may indeed seek treatment and cures, for many there is no cure. For those patients, the received narratives that admonish their suffering bodies who cannot appropriately ‘fight’ against their disease, function to erase trauma sufferers who simply want to accept the circumstances of their illness, and thus, their disability. Further, the data set highlighted that many within the community agitate for attention to palliative care to dismantle this notion that anything aside from a cure constitutes a personal failure. Siebers (2001) argues that society privileges ‘performativity over corporeality, favouring pleasure to pain, and describing social success in terms of intellectual achievement, bodily adaptability, and active political participation’ (740). Following Siebers’ (2001) lead, I argue that mediations of trauma, while requiring advances in medicine for practical, material reasons, also require advances in social justice, as well as representation, perception and identity politics. Turning to the data, it was apparent that there was a deep ambivalence that ran through the #btsm community when it came to the subject of Maynard’s death. When asked by Salmi, the leader of the group, if the community felt Maynard was exploited, others responded trying to ascertain the felt reality of navigating their own journeys through her narrative. Charlie Blotner, co-creator of the group, in response to Salmi’s question tweeted, ‘@TheLizArmy @BTSMchat How does that make you feel? Or still undecided on the feels? #btsm’ (CBlotner_ 2014). Salmi, after noting that she had the same original diagnosis as Maynard, replied that she was ‘still undecided on the feels. #getsmeinthefeels’ (TheLizArmy 2014). Other Tweeters noted their ambivalence differently, adding a layer of complication to the narrative that forced the conversation into a discussion of health coverage: ‘@TheLizArmy I understand Brittany’s decision, not sure I agree. Financially smart, if you don’t have insurance. #LifeIsAlwaysBetter #BTSM’ (Barr 2015). Many tweets, featured in the ‘tweet chat’ that asked about Maynard, articulated the uncertainty inherent in a decision to die from the perspectives of medical certainty in diagnosis, of religion and ability to go to Heaven, and ethical perspectives that entered meta conversations of the ethics of discussing and judging Maynard’s choice. In these tweets Maynard is no longer the subject in question; she is peripheral to both brain tumours and larger discussions of what it means to be sick in the current cultural, social, medical moment where mediation of illness and experience of illness often collapse into each other. Though much of

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the tweets do not focus on Maynard herself, throughout this chapter I will demonstrate that her narrative is essential to the memetic remediation and meaning making in that it is her collective resonance that enables these communities to connect. In other words, when Maynard became a flashpoint for the #btsm community, her story was layered into the other stories that were shared. Thus, as each user went on to share their own stories in the tweets, Maynard’s story was blurred, covered over, reframed, even erased from view at times, through its entry into the multiplicity of meanings the memetic logics enable. Maynard’s story exists alongside and within the stories that came after it, its resonance built into the intertextual weaving of collectively created content (Milner 2016, 26). The tweets in question are a form of re-mediation of the Maynard’s narrative. The original media artefact that caused Maynard’s story to spread was a video produced by Compassion & Choices, an organization that advocates for end of life rights. These tweets, while not directly referencing that media artefact specifically, function to play with the original messaging and meaning of the video and thus of Maynard’s story. These tweets do not simply reproduce Maynard’s narrative; they reproduce and shift it, distancing Maynard and bringing forth a deep seeded ambivalence about death, cancer and the constant pressures to conform to various received narratives of illness. In adding their perspectives these Twitter users produce new meaning around Maynard’s narration of her brain tumour. This works in part because these users are located in a particular media space at a particular media time. Just as trauma dislocates the suffering body from its place and time, so too do these tweets dislocate Maynard’s narrative, complicating it, nuancing it, adding to its circulation and shifting the discourse around it. Aside from the tweets that were part of the tweet chat held by #btsm on the evening of Maynard’s death, the larger data set found that the brain tumour community online shared several posts during this time that vacillated from patient testimonies, caregiver testimonies, expressions of compassion towards all those with brain tumours, as well as frank medical discussions with experts. The range of breadth of these tweets highlights that while users come together to discuss brain tumours, their discussions are varied, nuanced and constantly evolving as the hashtags are replicated and proliferated. Milner (2016), for example, argues that hashtags, even while they don’t make memes, are memetic in the way logics such as resonance and reappropriation enable them to be used by a variety of people for a variety of end goals, while still remaining a cultural touchstone for the sub-culture in question (1). From posts that share blogs about their family members’ illnesses to others that argue for and against various treatment options, the brain tumour community online is diverse and varied, yet it comes together without a sense that there is a right answer. The hashtags #btsm, #braintumorthursday and

64 Samira Rajabi even #BrittanyMaynard circulate in ways that give users licence to use those hashtags to ping a community while revealing or making meaning about something about themselves. For example, when one user uses #braintumorthursday to share a blog post about her mom’s ‘fight’ with cancer and nuance it from Brittany Maynard’s journey, she re-mediates Brittany’s story through her own lens. In so doing she makes it so the hashtags #braintumorthursday and #BrittanyMaynard stand for not just Maynard, but enable them to serve her narratives around what kind of suffering and engagement with cancer should be understandable in this digital community space (Rachel 2014). This reappropriation is still resonant to other users of the hashtags in question because it re-mediates Maynard’s story and uses it as a vessel through which to make @KickBrainTumors mothers’ suffering legible. Users show care with each other in the ways they offer support and there is an overarching veneer of positivity in the posts, such as this one that reads, ‘Differentiation #BrainTumorThursday,’ and is accompanied by a meme that reads, ‘We are all different and that’s beautiful’ over multi-coloured finger prints (Now 2017). Another post, for example, shares a hand-drawn image of a dragon wearing a grey ribbon for brain cancer awareness and breathing fire onto ‘brain cancer’ in order to end it (Fdn 2017). These tweets highlight the way digital space is a third space where users attempt to make room for the meaning, narratives and advocacy that they need to make sense of their traumatic experience. Building from Bhabha’s (1994) theory of third spaces, media scholars Hoover and Echchaibi (2012) examine what they term ‘digital third space,’ paying attention to how this space allows for rapid, simple and easy-to-access platforms through which to displace old ideas with new mediations. These re-mediations can be as simple as re- captioning an image or sharing it to a different network. In this space, people have access to a host of political and social communication across physical boundaries. The playfulness of the digital space encourages negotiative mediation that transcends time and is ever changeable, never fixed. The liminality of digital spaces and platforms allows for playful social interactions and negotiations of discourses and identities (Hoover and Echchaibi 2012; Willett, Robinson, and Marsh 2009). Important and resistive meanings made for and by contingent bodies are created and perpetuated because of the playfulness of the space. Brittany Maynard is just one flashpoint in the conversations that brain tumour sufferers engage in on digital platforms. For many, every day is an opportunity for mundane resistance and to carve out space for unruly, dysfunctional bodies with brain tumours to exist. @Hope4GreyMatter, for example, celebrated International Women’s Day and #BrainTumorThursday with a cartoon image that depicted many women of various shapes, sizes, races and abilities (as evidenced by the woman on the end flexing her muscles from a wheelchair) and

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read, ‘We are all Wonder Women!’ (Hope4GreyMatter(s) 2018). By tweeting this post, this user carves out space for Othered bodies to exist and enters into the discourse around illness, a new meaning, one that escapes the strict confines of sick and well and allows a range of bodies and abilities to exist and thrive. Beyond Maynard: One Story as a Way to See the Possibility for Resistive Action from a Community During the time after Maynard’s death digital users from bloggers to brain tumour sufferers weighed in on the politics and ethics of the death with dignity debate. While those posts are important, this chapter looks more towards meaning making as a form of dealing with a trauma. When I interviewed Salmi, Blotner and Hayden, I was struck by the rather matter-of-fact way they each discussed their diagnoses. I attribute this move to the personalized but community-based meanings they have made around their various diagnoses. While they are each in different moments of their brain tumour journeys, they all work towards patient quality of life and advocacy rights, arguably using advocacy for those suffering from traumas like theirs as a way through their disabilities. In other words, they made a new meaning making schema to build the routines and representations of their lives around, centring on patient advocacy and the needs of subjects with disabilities. Hayden, for example, discusses how natural it felt to him to be posting his life on social media and he articulated that his illness was just like any other part of his life, but he was looking for a digital space that fit what he was experiencing, not the image of cancer that is often perpetuated (Blotner, Salmi, and Hayworth 2018). Blotner also came to the community on accident. Blotner described posting questions as “second nature” to him, and Salmi and Blotner found one another when she responded to a nervous presurgical tweet where Blotner wanted to know the difference between a PET scan and an MRI (Blotner, Salmi, and Hayworth 2018). Salmi, Hayden and Blotner moderate the monthly #BTSM chats and each of them spoke about the monthly chats as a space through which people can democratically share their patient experiences. Hayden even refers to a philosopher working on the phenomenology of illness to make his point; he says, her thesis is that in western medicine especially, we tend toward reductionism and I think that is how it is in a lot of the sciences… What Carel says is that a lot of the problem with illness is that it is framed through a reductionism. That we put a medical lens on everything and takes away the experience of the illness, which is the phenomenology of illness. (Blotner, Salmi, and Hayworth 2018)

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Hayden urges medicine to have a patient-centred approach, with patient voices being a central component of understanding of illness. As the conversation continued and we discussed the trauma of illness and medical erasures of experience, Salmi recalled one Twitter user suggesting the #btsm community read a book about ‘post-traumatic growth’ and she wondered to herself if she was experiencing anything akin to post-traumatic stress disorder (PTSD), but noted she instead felt she was experiencing acceptance and curiosity more than anything. She also noted that this curiosity is what enabled her to face outward towards her community. While Hayden sees his tumour as separate from the case of Maynard, specifically because he was pre-diagnosis at the time, Salmi and Blotner discuss what was striking about Maynard and the mediations about her. Beyond all three of the interviewees noting that they support people’s right to choose whether they live or die, particularly in this case because of the severity of death a brain tumour can cause, they discussed their reactions in the context of the community. In the following excerpt, Blotner talks about how Maynard’s foresight about the difficulty of death caused by a glioblastoma catalyzed public support for her cause but also impacted the digital community. Blotner: I was surprised to see that she had any foresight because I do not think a lot of GBM patients have foresight or realize how shitty of a death it can be with the seizures and all of that. I was surprised how very articulately she was able to discuss all of those things in the videos that were created. I think that really strengthened the public support around her because she could talk about how shitty of a death it was going to be. I had never really seen or heard anyone talk about dying from GBM in that detail before, like they were really prepared for it. That made me think of who is on her care team that prepped her for that in terms of “Hey, this is what it is going to be like.” (Blotner, Salmi, and Hayworth 2018) Blotner goes on to discuss the way Maynard’s case gave social workers and brain tumour patients a reference point through which to discuss issues such as palliative care, thus shifting representation of brain tumours from a normative notion of curing to a more realistic evaluation of possibilities given a difficult diagnosis. Salmi also engaged with Maynard’s story deeply on a personal level, both online and in her day to day life as a brain tumour patient. At the time Salmi worked as an advocate for ‘advanced caring, palliative care and on end-of-life care’ (Blotner, Salmi, and Hayworth 2018). She said, ‘It was with me every single day, as patients, we have our professional life and then we have our health care lives and maybe an online life version

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of that’ (Blotner, Salmi, and Hayworth 2018). She notes however that in her job, she had to shed her patient title, she wasn’t ‘out in that community,’ so she experienced that people would talk very freely around her. Salmi’s engagement with her traumatic experience highlights why it was so important for her to claim digital space through which to articulate meaning around her illness while having to pass as well in her offline community. While she seemed grateful that she got people’s unvarnished opinions on Maynard’s choice in the spaces where she performed wellness, she expressed that she needed the online space to craft a response to the messages she was receiving offline. Salmi says, …the part of it that irked me a bit and why I decided to blog about it was because my friends who knew I had a brain tumor would ask me “What do you think?” I think a lot of people were like, “Brain cancer! The worst of them all.” And it is, it is not good. As somebody who responds to things with a lot of resilience maybe, I was like: I know many people that have brain cancer who do amazing things and are involved in a lot of stuff and have so much life to live before they eventually die. (Blotner, Salmi, and Hayworth 2018) Salmi found it problematic that while Maynard’s narrative was at the heart of the community’s discussions around life, death, palliative care and living with brain tumours, Maynard herself was not present for these discussions beyond her initial YouTube videos that were produced through Compassion & Choices. Salmi goes on: I never once heard anything about Brittany hanging out or befriending some of her brain tumor buddies and finding out about what that experience is like. Maybe she met other people with brain cancers, but as somebody who is part of BTSM community and the young adult stupid cancer community, she was 29 when she was diagnosed, and her initial diagnosis was a grade 2 astrocytoma. I was the same the same stage and same diagnosis. Ten months later, it [her tumor] grew and became glioblastoma. Six months later, mine grew back and I had to have another surgery, but the pathology did not change. I identified so much with her story…There were just so many similarities. What if she’d met other people and got to see life after glioblastoma? I believe that she eventually decided to take these life-ending medications before things got too wild and crazy but all of us are dealing with deficiencies one way or the other depending on where our tumors are located. I think it is important for people to meet others like them and make that part of the decision-making process. (Blotner, Salmi, and Hayworth 2018)

68 Samira Rajabi This exchange highlights the importance of the community in nuancing the way patients see themselves and their diagnosis. Throughout my conversation with Blotner, Salmi and Hayworth they each identified the way the community allowed them to be in a space of shared experience, making the experience less something that needed to be fixed and instead recognizing it as another facet to life. Hayworth articulated his engagement with the #BTSM community, for example, as ‘lifting up the experience’ of suffering from a brain tumour from a phenomenological perspective. He noted that this digital space was one of ‘empathetic witnessing,’ referring to his engagement with the work of American psychiatrist and professor of medical anthropology Arthur Kleinman, and the notion that doctors ought to sit with patients to make meaning from the chaos (Blotner, Salmi, and Hayworth 2018). Rather than just doctors and patients going through illness together, all three #BTSM participants identified their online engagement as a space through which caregivers, patients and medical professionals could navigate the chasm of senselessness thrust upon them by their newfound change in abilities. Trauma dismantles the social contract that bodies have with the world; for Salmi, Blotner and Hayworth this space was remade through their engagement with one another online and with the broader community of suffering subjects. In part, this remaking also remakes Maynard’s story for the community as well. Maynard becomes a symbol for this community; the #btsm community can evoke her as a symbol to signify their own experiences and the legibility granted to them through engagement with her decision to die. As Maynard’s story is re-tweeted it is re-mediated. In the remaking of Maynard’s story with every sharing of it, digital users are inflecting her story with their own and in so doing changing what she stands for. The same happens each time social media users impacted by brain tumours inflect the community hashtags #braintumorthursday and #btsm with narratives of their own suffering bodies. Each re-mediation, through memetic logics of spread, replication, resonance and collectivism, shifts the meaning of what Maynard’s original narrative of her situation stands for (Milner 2016), just as each tweet that uses #btsm or #braintumorthursday pushes the boundaries of who is a part of the collectivity that this hashtag and its accordant meaning making strategies are resonant with. Though we have YouTube videos of Maynard speaking, it is hard to know what she was intending, aside from the very overt advocacy for death with dignity laws. The re-mediations of her, however, stake a political claim in the way they allow or disallow certain attitudes about bodies to exist. For example, one tweet that was shared on Twitter linked to a blog post titled ‘Dear Brittany: Why we don’t have to be so afraid of dying and suffering that we choose suicide’ (Voskamp 2014). The blog, situated in a self-described Christian sensibility, disparages Maynard’s decision. Regardless of the problematic nature of this post,

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it is still evidence of the multitude of ways hashtags are used memetically to enable foreclosures and possibilities around discursive meaning for disabled bodies. Others re-mediated Maynard’s story in order to make meaning around their own illness, like one user whose tweet read ‘I want to die like Brittany Maynard,’ and yet another who noted that Maynard’s choice allowed others to ‘choose dignity’ (Jennifer 2018; USAMedImaging 2015). Each variation on her story, linked through hashtags and layered into hybrid texts through memetic logics, creates a resonant, collection of ideas that circulate and spread online – and these circulations push discursive boundaries differently in various communities. The posts that circulated around Maynard fulfilled Milner’s (2016) five categories of memes in that they were reappropriative, resonant, collective, multimodal and spreadable (Milner 2016, 26). Through creating new meanings for suffering bodies, these moments serve as micro-political gestures in the everyday life and can be ways for marginalized, sick bodies that are so often relegated to the outside of society and forced into medicalized discourses, to make meaning that allows for the legibility of their experiences. That meaning is often progressive, but often, like the example from Voskamp, reinforces a culture of fixing in which illness without cure is an unacceptable outcome. The majority of the social media artefacts collected, regardless of the stance they take in relation to Maynard, highlight the way the digital space enables a discursive negotiation around the boundaries of disabled, sick bodies. Most users, especially those in the brain tumour community, invoke Maynard to discuss their own narrative of health as they situate their identity as a patient or caregiver in the broader community. One #btsm community member tweeted, ‘Brittany’s decision was hers. Everyone judging should direct their energies 2 stopping brain cancer so no one else has to make it. #btsm’ (Novemberdawn 2014b). She then replies to her own tweet noting, ‘I should’ve said “stop brain tumors.” “I have an incurable benign brain tumor & attempted what Brittany did and failed. #btsm”’ (Novemberdawn 2014a). Smith uses Maynard to articulate her own suffering, in so doing she re-creates Maynard’s story in the context of her own, forcing it to signify something bigger than the legislative battle for choice in death, instead making Maynard’s name also stand for a negotiation of life in a suffering body and imbuing it with her own testimony.

Conclusions I will never forget the feeling I got in the pit of my stomach when I watched Brittany Maynard tell me why she was choosing to die. She was clear, she didn’t want to die, but she wasn’t going to die the death of what had always been represented to her as a cancer patient. I will also

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never forget what I did next: go online, log into Twitter and type ‘#btsm’ into the search bar. My own illness had already rattled my world and in my head I was already painting Maynard’s story onto my own. With every stroke of the brush of my story and Maynard’s story on the same canvas they began to meld into each other. When I saw the results of my search I saw that I wasn’t alone. It is in the stories that were told alongside mine that my story became a collective one. It both belonged to me and belonged to the #btsm community. Moreover, my story became situated in a broader discourse, one in which I railed against the diagnosis of a brain tumour and one in which I watched others make similar political gestures to be seen in their disabled, suffering bodies. What is at stake in calling these tweets and other digital gestures meaning making as a direct response to trauma? Further, do these tweets and gestures resist the discourses of medicalized illness that relegate the suffering body to the outskirts of social space? Though many of these users may not articulate trauma as a reason they came together, with the unifying factor of the community being some degree of interaction and engagement with brain tumours, the trauma of chronic illness, cancer or brain tumours is always present. In this way, disability, as a way of knowing the body and setting boundaries on the body, is also ever present. The videos produced by Compassion & Choices about Brittany Maynard, while attempting to perpetuate a non-normative way of looking at disease, do so by enforcing notions of overcoming. In arguing that Maynard should be able to end her life because it is no longer of value to her, the short films enforce the notion that if a disease cannot be overcome in a way that restores some semblance of normalcy, that body is no longer of value. Alternatively, these videos can be seen as resistive media artefacts, particularly when positioned against mainstream medical discourse that focuses more on life than death. For Maynard, perhaps overcoming was a process found in death. While this still fits into a narrative of disability needing to be triumphed over, this notion of overcoming shifts what we understand as the means through which this is done. She overcomes in death, in deciding her fate as opposed to letting her disabling illness decide it. In advocating for a change in the culture of fixing that narratives of illness and disability are so frequently steeped in, Maynard pushed the boundary of what it means to overcome. Her name, as a memetic process through the way it was deployed as a hashtag, further enabled a renegotiation of the ambivalent engagement with life and death when faced with terminal illness. Other tweets such as the widely shared article about a young woman’s mother who had the same condition as Maynard perform a different type of overcoming. The tweets that shared this article were like this example ‘My Mom Has the Same Brain Cancer Diagnosis as  Brittany Maynard, She’sFighting2Live http://shar.es/10N1H3 via @ sharethis #BrainTumorThursday’ (Rachel 2014). Tweets like this one

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also perpetuate ideas of overcoming but ones that articulate overcoming as defeating of a disease, vanquishing it or winning a fight against it. Messages that position cancer sufferers in the midst of a battle complicate the relationship between life and death, offering new space to recognize what it is to live, what it is to live a life of value, but also positioning the suffering body as one that requires fixing. Maynard’s story was one of many that stood out as a flashpoint, bringing the suffering of one woman forward, as the marker of many suffering bodies. Ultimately these communities that diffusely form around the shared experiences of suffering from brain tumours enable a sort of performative meaning making that is not always available to people in their of fline worlds. Brain tumour patients and caregivers are thrust into spaces of meaninglessness and these communities allow them spaces through which to use hashtags to feel a sense of connection, while also being able to be loosely connected enough to allow for the ambivalence of a broken meaning making schema to play out. Users like Salmi, who must perform wellness offline, while mediating illness online, find important connections through digital affordances. What for some is overtly felt and categorized as trauma, for others can be characterized as resilience; thus the normative discourses around illness become slippery and open to change. This change is made possible by agentic users placing their important lived experiences in conversation through memetic processes afforded to them by hashtags. This chapter has examined the way a loosely formed, digital community responded to the cultural flashpoint Brittany Maynard’s suffering provided, in order to begin a discussion about what resistive media use looks like for disabled, traumatized bodies. While many of the mediations of illness found online perpetuate narratives of illness, many of them do serve to at least create the possibility for new meanings. As this chapter has demonstrated, the digital community, in putting patients in contact with one another, enables patients to decide how to position themselves, their bodies and their stories in their broader world.

Notes 1 Brittany Maynard is not the only person to have had a terminal illness to be mediated in digital media but her case was an interesting flashpoint for the patient-led #BTSM (Brain Tumor Social Media) community. As a participant observer in this community I had the unique positioning to explore this case and determine what it offers to scholars interested in examining representations and interactions around bodies with a disability on social media. Accordingly, the hashtags selected for this research focus on the hashtags used by members of the #BTSM community, most notably, #BTSM, the hashtag that organizes the group and forms the group identity. 2 All of the participants in the interview were aware that their real names would be used in this chapter. As their advocacy is in the public sphere and publicly available, they were not concerned with privacy in this regard.

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Samira Rajabi I opted to conduct the interviews at once in order that my contact in the BTSM community, Charlie Blotner, could facilitate introductions between me and my interlocutors. In performing the interviews at once, I was able to build a rapport with all three interview subjects to get at the goals of the community as they were expressed by its founding members.

References Alexander, J. C. 2004. Cultural Trauma and Collective Identity, University of California Pr. Balkin, Jack M. 2004. “Digital Speech and Democratic Culture: A Theory of Freedom of Expression for the Information Society.” New York University Law Review 79:1. Barr, C. W. 2015. “@TheLizArmy I understand Brittany’s decision, not sure I agree. Financially smart, if you don’t have insurance. #LifeIsAlwaysBetter #BTSM.” Edited by @RCRedskins: https://twitter.com/RCRedskins/ status/580792570332209153 [Twitter Post]. Bennett, Jill. 2005. Empathic Vision: Affect, Trauma, and Contemporary Art. Stanford, CA: Stanford University Press. Bhabha, Homi K. 1994. The Location of Culture. New York: Psychology Press. Blotner, Charlie, Liz Salmi, and Adam Hayworth. 2018. Edited by Samira Rajabi. CBlotner_. 2014. “@TheLizArmy @BTSMchat How does that make you feel? Or still undecided on the feels? #btsm” [Twitter post]. https://twitter.com/ CBlotner_/status/529114024537894912. Chen, Carl. 2012. “The Creation and Meaning of Internet Memes in 4chan: Popular Internet Culture in the Age of Online Digital Reproduction.” Habitus 3 (1):6–19. CompassionChoices. 2014. The Brittany Maynard Story edited by YouTube [YouTube]. Cvetkovich, Ann. 2003. An Archive of Feelings: Trauma, Sexuality, and Lesbian Public Cultures. Durham, NC: Duke University Press. Davis, Lennard J. 1995. Enforcing Normalcy: Disability, Deafness, and the Body. New York: Verso. Durham, Meenakshi Gigi. 2011. “Body matters: Resuscitating the corporeal in a new media environment.” Feminist Media Studies 11 (1):53–60. Edkins, Jenny. 2003. Trauma and the Memory of Politics. Cambridge, MA: Cambridge University Press. Emmons, Robert A. 2005. “Striving for the Sacred: Personal Goals, Life Meaning, and Religion.” Journal of Social Issues 61 (4):731–745. Erevelles, Nirmala. 2011. “The Color of Violence.” In Feminist disability studies, edited by Kim Q Hall. Bloomington: Indiana University Press. Fassin, Didier, and Richard Rechtman. 2009. The Empire of Trauma: An Inquiry into the Condition of Victimhood. Princeton, NJ: Princeton University Press. Fdn, Dragon Master. 2017. “Let’s make 2017 the year we put an end to #cancer #Braintumorthursday #endcancer #fightcancerwithdragons.” Edited by @ DragonMasterFdn [Twitter post]. Garland-Thomson, Rosemarie. 2002. “Integrating Disability, Transforming Feminist Theory.” NWSA Journal 14 (3):1–32.

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Gawande, Atul. 2014. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books. Herman, Judith Lewis. 1997. Trauma and Recovery. Vol. 551. New York: Basic books. Hope4GreyMatter(s). 2018. “It’s #BrainTumorThursday annnnnndddddd #InternationalWomansDay2018 #Becausesheisawoman #IWD2019 #Internationalwomansday #wonderwoman.” Edited by @hope4greymatter [Twitter post]. Hoover, S. and Echchaibi, N. 2012. The “third spaces” of digital religion. University of Colorado Boulder: The Center for Media, Religion, and Culture. HYHUTriangle. 2017. “Healthy people can become sick people in the blink of an eye #btsm.” [Twitter post]. https://twitter.com/HYHUTriangle/ status/936035949091450881. Jackson, Michael. 1983. “Knowledge of the Body.” Man 18 (2): 327–345. Janoff-Bulman, Ronnie. 1989. “Assumptive Worlds and the Stress of Traumatic Events: Applications of the Schema Construct.” Social Cognition 7 (2):113–136. Jennifer. 2018. “I want to die like Brittany Maynard.” Edited by @AFewGoodJens [Twitter post]. Kirmayer, Laurence J. 1992. “The Body’s Insistence on Meaning: Metaphor as Presentation and Representation in Illness Experience.” Medical Anthropology Quarterly 6 (4):323–346. Knobel, Michele, and Colin Lankshear. 2007. “Online Memes, Affinities, and Cultural Production.” A New Literacies Sampler 29: 199–227. Lee, Virginia. 2008. “The Existential Plight of Cancer: Meaning Making as a Concrete Approach to the Intangible Search for Meaning.” Supportive Care in Cancer 16 (7):779–785. Linton, Simi. 1998. Claiming Disability: Knowledge and identity. New York: New York University Press. McRobbie, Angela. 2004. “Post-feminism and Popular Culture.” Feminist Media Studies 4 (3):255–264. McRuer, Robert. 2010. “Disability Nationalism in Crip Times.” Journal of Literary & Cultural Disability Studies 4 (2):163–178. McRuer, Robert. 2018. Crip Times: Disability, Globalization, and Resistance. New York: New York University Press. Milner, Ryan M. 2016. The World Made Meme: Public Conversations and Participatory Media. Cambridge, MA: MIT Press. Novemberdawn. 2014a. “I should’ve said ‘stop brain tumors.’ I have an incurable benign brain tumor & attempted what Brittany did and failed. #btsm” [Twitter post]. https://twitter.com/novemberdawn/status/ 529123005688217600&src=typd. Novemberdawn. 2014b. “T2: Brittany’s decision was hers. Everyone judging should direct their energies 2 stopping brain cancer so no one else has to make it. #btsm” [Twitter post]. https://twitter.com/novemberdawn/status/ 529117441654554624. Now, Cure Cancer. 2017. “Differentiation #BrainTumorThursday.” Edited by @ CancerCureNow [Twitter post]. Piekot, Tomasz. 2012. “Pictorial Representation of Idioms in Internet Humour.” Estonia and Poland: Creativity and Tradition in Cultural Communication 1:187–203.

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Rachel, I Live Now. 2014. “My mom has the same brain cancer diagnosis as Brittany Maynard, She’s Fighting2Live.” Edited by @KickBrainTumors [Twitter post]. Rothe, A. (2011). Popular Trauma Culture: Selling the Pain of Others in the Mass Media. Rutgers University Press. Rose, G. 2011. Visual Methodologies: An Introduction to Researching with Visual Materials. London: Sage Publications Limited. Scarry, Elaine. 1985. The Body in Pain: The Making and Unmaking of the World. New York: Oxford University Press. Siebers, Tobin. 2001. “Disability in Theory: From Social Constructionism to the New Realism of the Body.” American Literary History 13 (4):737–754. TheLizArmy. 2014. [Twitter post]. https://twitter.com/CBlotner_/status/ 529114346287136769. USAMedImaging. 2015. “Brittany Maynard Brought Much-Needed Attention to Brain Cancer and Choosing Dignity.” Edited by @USAMedImaging [Twitter post]. Voskamp, Ann. 2014. “Dear Brittany: Why We Don’t Have To Be So Afraid of Dying & Suffering that We Choose Suicide.” Ann Voskamp, October 10, 2014. Willett, Rebekah, Muriel Robinson, and Jackie Marsh. 2009. Play, Creativity and Digital Cultures. Vol. 17. New York: Routledge.

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Inscribing Comedy in the Breast Cancer Narrative. Disease, Autoethnography and Black Humour Rachel Velody

Introduction: Personal Mess and Abject Mirth Throughout intensive medical interventions for breast cancer between 2011 and 2016 I didn’t write about my encounter. I was, nonetheless, a permeable membrane, absorbing, archiving, reflecting. In this chapter, I use autoethnography to shape a sensory performance-experience concerning my corrupted left breast, the impacts of diagnosis and treatment, including mastectomy and chemical treatment, together with the effects of reconstructive surgery. This personal voyage, itself a memento mori, challenges societal rejections of ‘dis-ease,’ illness and finitude, ‘exorcising’ the disease whilst paying homage. For illness is part of who I am. Carolyn Ellis (2004) advocates for academics to produce intimate ethnographies, ‘stories with raw and naked emotion that investigate life’s messiness, including twists of fate and chance’ (Bochner and Ellis 2016, 10). This reflexive, instinctual approach to literary exposition overlaps with Cixous’ philosophy of feminist linguistics (Cixous et al. 1976). Her ‘ecriture feminine’ privileges ‘non-linear’ (Jacobus and Barreca 1999, 23), ‘cyclical’ (Humm 1991, 21) narrative, a location in which female identity becomes ‘Alien’ (ibid.), permitting a process of separation from, and rapprochement with, the self. I filter Ellis’ expressive ‘chaos’ and Cixous’ dynamic of estrangementreconciliation, through an aesthetics of black comedy memoir. The horror of diagnosis, prognosis and medical intervention is fashioned as primal experience, and whilst the abject is sometimes expressed sombrely, it is also crafted through absurdity, comedy and ‘gags’: via dialect, abbreviations, acronyms, exclamations and obscenities, together with the idiosyncratic tonality of rhythm and timbre. Academic referencing and medical terminology is kept to a minimum, to encourage a visceral reader experience. And, as sickness is uniquely traumatic, reflecting, typing, speaking, shouting, laughing, crying, cursing, approving and discarding my scribbles, seeking feedback, exemplify therapeutic acts of experiencing-whilst-chronicling ‘abject mirth.’ I begin.

76 Rachel Velody A Brown Envelope Buried within the porch detritus of garden pots, walking boots, cardboard recycling, and mud: A brown envelope. I peel it off the floor. South West National Health Service (NHS) is extending mammograms to women of ‘a certain age.’ A shade over 47 I can be a beneficiary of this thrilling prize. Tempting. But I’d miss an ‘education learning and teaching event,’ a throng of presentations verifying our Uni’s pole-position in Higher Education, and thereby incur a hefty X next to my name. And yet. The left breast is behaving curiously, spilling out over my balcony bra. I view this ill-disciplined flesh as a temporary irritant, a continuation of my bloody menstrual her-story and anticipate, with pleasure, the IUD coil, an intrauterine device being fitted shortly. Snug in the womb it should eradicate a host of medical conditions I’ve had since first I fought a tampon. Soaking bedsheets and clothing with blood, agonizing stomach cramps, obnoxious mood swings, epilepsy, depression, consigned to the past. ‘It’s dangerous’ mother pleads. ‘Mum, I no longer care. It’s quality of life, not quantity.’ Oh, will that comment come back to bite me in the arse. I forego the school ‘drill’ and nip down to Chesham’s council car park where the NHS mammogram mobile unit is unceremoniously plonked. There, I let them crush my breast tissue between two plates, which hurts like hell. But: Good decision. A fortnight passes, another communiqué: I’ve been ‘recalled.’ Unaccountably nervous, I ring Aunty Jan whilst scurrying through central London to college. ‘Ninety-nine out of a hundred recalls are fine’ she declares, a point confirmed in the letter. Another fortnight drifts by, I saunter into Wycombe Hospital’s shiny Breast clinic to collect those negative results on my way to work, on my own. Bad decision. The radiographer wants to do further mammograms ‘Now’ as my piccies taken in the nomadic knocker truck have ‘little white specks of calcium, can you see there on the negatives what we’re a bit concerned about Rachel?’ First name terms, that’s suspicious. I peer at talcum powder scattered liberally through the obscenely enlarged breast tissue in the mammogram. Why haven’t they invented colour yet? And which one are we looking at? ‘That’s calcium.’ she states. So? In the corridor a female nurse is chatting with a consultant, sporadically turning to smile at me. Do we know each other? Lovely warm countenance, impressive uniform, is that shade cerulean blue? An adorable nametag. The kind that, when bored-yet-anxious, makes you ruminate: ‘How do they etch the lettering? Attention to detail, I like that’.

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I squint at the badge. ‘M.A.C. Nope can’t quite make out that second bit. Ends with an N? Hmmmmm. Got it. MACMILLAN!’ I lean back with a self-satisfied glow. Then the penny drops. OH. It’s not her name, it’s a logo. She’s a Macmillan Nurse, part of the ‘special’ cadre supporting cancer patients,

a spectral portent

of death.

My respiration rapidly increases, fortunately, a delicious drug known as ‘denial’ is on standby and ingested post-haste my b.p.m. slows. Gratified I’m not about to expire on the white glossy tiling I beam triumphantly at Macmillan, for she is nothing more than an erroneous apparition who will shortly vanish into the ether. The speed between the tests increases, the consultant opting for an ultrasound. She slathers my left chest in ice cold gel and pushes a tiny contraption back and forth across my flesh. As I turn to a block of ice, we gaze together at a monitor where my breast appears, an animated line drawing across a black screen. ‘Could you take a seat?’ The 20-minute ‘results collection’ morphs into an hour, as the consultant decodes the X-rated cartoon. I focus on the important stuff, making it to ‘Pret’ for a coffee and a buttery croissant before arriving late to work, I’m starving. ‘Rachel.’ First name terms again, ominous. Oh God, it’s M. (Macmillan), smiling saccharine-sweet: ‘We’re going to do an aspiration. That way we can get a biopsy and see things that the mammogram and the ultrasound can’t necessarily find.’ Find? Find what? I have a train to catch, I’m going to be exceedingly late. I’m hungry. Yet, illustrating trust and folly in equal measure, I comply – eagerly. Lying on my back, knees raised, toes touching, I smile, joke and giggle with M., who admires my red brogues, as the consultant takes an obscenely long, wide needle, and plunges it deep into the tissue of my left breast. The shock, the pain, cause me to yell: ‘Ahhhh!!!!’ ‘Fuck that hurts. Shit. Fuck!’ This is all wrong I have to get the train. She rams the needle in again, all 15 inches:

“FUCKKKKKKKK-CCCC” Shaking, disorientated, unable to buckle my shoes, M.is suddenly transformed from her previous status as the Angel of Death into my New Best Friend, helping me to regain my balance, to do up my footwear and the final indignity, to provide a shoulder to lean on as I shuffle and sway out of the diagnostic space. The tempo speeds up again: suddenly I’m in the consultant’s confined office. Without considering the consequences, I’m effecting my ‘academic interrogation’ technique, demanding clarification – although

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it doesn’t quite come across that way: ‘D-Do Ah-I – I- have- cancer-I c-can- cope-I’m- not- going- to- break- down-I just need to know?’ She tells me, ‘informally,’ it’s almost certainly Breast Cancer, it’s aggressive, (is any tumour polite?), and I should see the consultants (note plural), at Wycombe asap. Following the ‘be careful what you ask for’ one-to-one, I stumble down the corridor with M. jovially comforting me with the news that she will be present every step of the way, ‘whatever happens’ and so we hug before I begin to process that ‘whatever happens’ is a reference to my funeral. Still, she doesn’t need to worry about my state of mind: I’m ecstatic! This is fantastic news! I don’t have to go to work today. Or perhaps for the rest of my life. (I might even lose some weight). Oscillating, or rather careering, between shock, denial and detachment, I lock myself in the loo, which, unluckily, faces directly onto the waiting room. Suddenly I’m weeping, albeit discreetly, aware of my proximity to the ashen-faced women in the corridor, doubtless hopeful they aren’t another of the one in 100 lotto winners. Compartmentalization next kicks in, essential for NHS staff who must hand out this rubbish news, and for the patient. Which may explain why, adrenalin surging, I jump on the Wycombe to London train. I’m off to college. Half-way to Marylebone station I ring my twin sister who answers, though it’s only 3 a.m. in the States, interrupting my incoherent sketch of the clinic’s tests and diagnosis: ‘Rachel. Get off the Train Now and Go Home.’ But my brother and his partner are already haring, by motorbike, to rendezvous with me at the British Museum. So, I head into its vast atrium. And on a stone bench, fall fast asleep, slap bang in front of The Elgin Marbles. Work signs me off for a few days. Then weeks And months. Here’s why. In Limbo: Diagnosis Continues My partner Martin and I sit in the consultant’s room in Wycombe Hospital. M. materialises. I shrug my shoulders, accepting her presence as evidence of paranormal forces. The oncologist and surgeon confirm that the cancer is Grade three DCIS (Ductal carcinoma In Situ) HER-2 positive, aka human epidermal growth factor receptor 2. HER-positive? As in ‘woman friendly’? If DCIS is supposed to be non-invasive, if ‘in situ’

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means in one place, why are there carcinomas everywhere? How can the disease have spread from the left breast to the lymph nodes under the armpit? And anyway, what the heck is a lymph node? Metastasis? My brain slowly deconstructs the term, slotting it into the rest of the surgeon’s sentence: ‘dispersal to other parts of the body.’ Instantaneously I envisage the through line: Cancer ⟶ Spread ⟶ Incurable ⟶ Hospice Death (presumably down the road at Stoke Mandeville hospital’s Florence Nightingale ‘chapel of rest’). But I’m well. The best chance? I interject ‘Hang on!’ and, to the assembled room of consultants, Martin and M., I make a desperate bid to curtail this fast-developing melodrama: ‘I mean – this isn’t going to kill me.’ Amid the reverberating silence a half-asphyxiated, incredulous squeak emerges from my larynx: ‘Is it?’

FUUUUUUUCCKKKKKKKKK KKKKKKKKKKKKKKKKKKK AGHHHHHH!!! The glasshouse of ‘morbidity happens to other people’ is in smithereens as I am transported into the passenger seat of a Mercedes SLK, (convertible), driven by the Grim Reaper. Shrieking maniacally, careering full throttle down the Autobahn, ignoring the federal speed limit and accelerating into ‘sport mode’ we are being catapulted towards the precipice of a mountain peak, where a towering billboard is alternately flashing deepest crimson and darkest noir, a calligraphy dripping with, entrails?

! ‘Achtung! !!Terminal Velocity!! 100,000-foot drop & then some’. Before I lose all inhibition and scream the place down this phantasmagoria evaporates, for I am etching diagnosis, treatment and termination as events happening to someone else. Fashioning what I believe is an optimistic countenance, unaware I’m wearing the contorted grimace of the ‘Joker,’ I nod like a puppet, while the team discusses the fine features of disease and ‘best options.’ The squad will utilize a targeted intravenous (IV) chemotherapy, one that seeks out and destroys oestrogen, (cross

80 Rachel Velody fingers). ‘Therapy,’ with its connotations of a health spa, strikes me as a wildly inappropriate phrase but I must focus. There follows further discussion about my form of breast cancer, apparently, ‘calcification’ or excessive oestrogen, essentially an exploding Catherine wheel of carcinomas in my breast. The surgeon elucidates another key aspect of my judicial sentence, ‘radical mastectomy.’ The expression passes through his lips, a lethal vapour subtly infecting the room. I’m still smiling, perhaps too widely, and nodding, certainly too quickly, for it’s a fascinating monologue concerning a medical procedure that I might otherwise be watching on catch-up TV. Then there’s a spot of deep heat treatment via radiotherapy to vaporize remaining cancer cells. Assuming my body is amenable, I win a bonus prize, biological therapy, in the form of an HER-2 specific monoclonal antibody drug called Herceptin, also to be given via IV, in a bid to encourage my immune system to actively attack potential cancer cells. I then finish my Champneys’s retreat by taking Tamoxifen for five years to prevent oestrogen developing in my body. Have I got all that? The single connection I make from the torrent of information is that had the IUD been fitted, as it was due to be, 14 days ago, I would actually be sitting here with a silent but deadly IED in my uterus, dispersing oestrogen along a pelvic highway sign-posted ‘cancer next exit’. Otherwise I digest little, including the links between breast, malignancy and surgery. Until the close of the tête-à-tête, at which point the surgeon returns to the minutiae of mastectomy and I am faced with the stark, incontrovertible fact that my Left Breast will be removed, completely. In about 15 working days. My best pal Paula and I are driving around Whipsnade Zoo admiring the Grevy’s Zebras when a call comes through from M. to let me know that the operation is being halted. I grab P’s arm and holler ‘No Mastectomy!’ I’m euphoric. For about five seconds. Which is the time it takes her to scribble a note with one hand whilst smoking a fag with the other: ‘They’re Staging You.’ ‘Are you Staging me?’ ‘That’s right Rachel, we are.’ I ask P. what staging means, as I often do whenever there is something important about which I haven’t a clue. It transpires that it is futile to remove the breast from a woman whose tumours have metastasized. With cancer multiplying and mutating in the lymph nodes, my ranking in the Premier League Championship is already impressively high. And if the disease has migrated into the bloodstream and onwards to ‘other places’? It’s Championship Finals, it’s Penalty Shootout, it’s Scoring the Winner, cue Mexican Wave,

iiiiiiiiit’ss…

DEATH.

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So, the good news is I get to keep my ‘rack,’ the bad news is I need to start planning my funeral. Note: ‘no flowers, diseased carcass to be dissected and distributed for the benefit of low-flying Kites’ (local birds of prey). It’s a comfort that the remnants of my cadaver scattered over the Chiltern hills will, coining Mary Poppins, ‘feeeeeeddd the birrrrrrrrds’ and contribute to the vicinity’s rural tag line: ‘area of outstanding natural beauty.’ P. continues puffing away, so I filch a fag and from then, for several years, intermittently sin with a ciggy, a health ‘no-no’ about which I persistently fib to the medical squad. It’s all in the past Mum, honest. The staging conundrum necessitates a retinue of tests and I teeter on the cusp of institutionalization, negotiating grim tedium and mounting anxiety. And from this point my battered Freelander becomes protective shell and private bio-hazard, as I adopt the guise of urban D.J., tracks blasted at a mercilessly high volume, wearing the necessary sartorial accessory, dark shades. In this alternate universe I cruise in my black hearse between different sites and diagnostics. To the phlebotomist for blood tests, for x-rays and ultrasounds, all to identify indicators of metastasis in the liver, lungs and bones. And a biopsy to see if they can definitively locate the variant, the mutation of cancer germinating in the breast tissue which they think is HER-2. There continues a niggle about my liver, ‘probably a benign cyst.’ Despite all tests, including a ‘hold-my-bladder-in-agony-UH-OH!!-I-think-I’ve-wet-myself’ ultrasounds are ‘inconclusive.’ An MRI, magnetic resonance imaging, will M. remarks soothingly, be definitive. This doesn’t comfort me. At. All. I stomp through the Hospital car park, slam shut the door of my Humvee, MAX the volume on Elvis Costello’s ‘Pump it Up,’ and REV the engine, HARD. The car reverberating to the booming bass, I stick two fingers up at M., wherever she is. It’s Good to be Gobby. But that attitude doesn’t always work. Days later, apprehensively waiting to enter the MRI suite, I find myself, as one does, mysteriously seated at a roulette table. A familiarly cackling skeletal figure, dressed as a croupier, tosses gambling chips at me: goodness those fingernails are filthy. With grimy digit and thumb, s/he spins the wheel. I Gasp. For numbers are replaced with letters, which, as the table whirls ever faster, merge…on-the-Black-Stage-Threeeee-Survivallllmayyy-beeeeeon-the-Red-Stage-Four-Allllbetttssarrreofff! Which may explain the uncontrolled sobbing as a ‘contrast medium’ is injected and weaves through my body like a cold coil. The tell-tale dye will allow the radiographers to scrutinize whether and to what extent the cancer is in the liver, in the liver, in the liver, they think it’s in the liver. I am next incarcerated inside a glossy white tubular casket with the nameplate ‘claustrophobia,’ an intercom for company on my trip into Hades. ‘Rachel. If you feel uncomfortable or want us to stop. Just press

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this button.’ I feel uncomfortable and I’d like you to stop. ‘We’re going to start, you need to stay absolutely still, ok?’ It’s not ok, there’s zero wiggle room and you’re seeking evidence of my untimely demise. Lights flash, a noise not unlike HAL, bellows in my ears, then through my entire body: WAH! -WAH! -WAH! ‘Good Rachel. Next scan starting in a few seconds, ok?’ It would be. Except for those fast-flickering fairy lights and HAL ratcheting out a series of military commands: A-A-A-A-A-A-A-A-A! / A-A-A-A-A-A-A-A-A! / A-A-A-A-A-A-A-A-A! Can’t any of you hear this? ‘Anddd the next scan is startinggggg… nowwww. Breeeeeathe in. Aaaa-ndddd Holddd…’. Encased inside a psychotic A.I., I feel precursors to an epileptic attack. Hands clammy, heart-beat increasing, I ‘miss’ fragments of the temporal, it’s the flickers of electricity in my faulty brain. This is the state of petit-mal. Present-absent, present-absent I depress the remote. Nothing Click-click. No response. They are engrossed in images of my (diseased?) liver Heart racing, hands sweating, I press again. Zero I’m heading towards a condition impervious to ‘Immersive Mindfulness,’ Grand-mal seizure: There my body will repeatedly twitch and jerk, and I will lose consciousness, convulsing. Complemented by foaming at the mouth, chewing off a taster of tongue, gnawing away a lump of lip, potential incontinence, head and limbs thrashing against this – this tomb. Hellllllllllp meeeeee A lifetime, or rather ninety seconds later, I’m brought out intact, if mute. ‘Well done’ says the radiographer brightly. As the medical team is confident about a ‘negative’ outcome, however, my fears gradually dissipate. Consequently, I strut into the consultation the following month, with just a wide smile for company, which promptly falls away. They are discussing the contents of a folder, visibly upset. Liver. It is in the liver. Winded. Can’t breathe. A disembodied howl erupts. Then stops. Dead. Despite these ‘exit’ signs, the team sends me to the John Radcliffe Hospital in Oxford where an expensive PET machine (Positron Emission Tomography), scans the organ via a radioactive tracer. Another trip to the Underworld.

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Time speeds up and slows down when you’re waiting to find out if you get to live or die. Tickckcccccccccccccc Tockckccccccccccc Tickckccccccccccc Tockckcccccccccc TickkcccTockkccTickkccTockkccTickkccTockkcc Tick-Tock-Tick-Tock-Tick-Tock-Tick----Tock-Tick-Tock-Tick-Tock-

T I I I I I C C K C C C -T O O O C C C C C C K K-K-CCCCCCCCCCCC

-The Clock Stops. DEAD? We’re back at Wycombe… It’s Negative.

Positively-Great-Negative! As Cathi, another friend who smokes like a chimney, says: ‘It’s All Good.’ It is Good. It also means that Treatment starts. In Hell: Chemotherapy and More The essential factors ensuring that the barista embellishes my semiskimmed cappuccino with sprinkles of life are as follows: submissively imbibing all treatments; accessing the superb skill-set of the oncologists, surgeons and nurses – including the fantastic Macmillan team; being receptive to everything I’m given; and complete passivity. So, IV chemotherapy. It’s a doddle isn’t it? I turn up, they pop a needle in, I lose my hair temporarily, and receive a frothy coffee, replete with fairy dustings smacked through a stencil spelling out ♥ Life Expectancy Radically Extended ♥. Not exactly. I must tolerate a toxic drug regime over six months, composed of cycles beginning with a combination drug, FUCK-T, I mean FEC-T. At 47 FEC-T rapidly leaves me hairless: no hair on my toes, legs, pubis, stomach, underarms, face. Some women pay for this. The joke wears thin, literally, as strands, and then locks come away whenever I carelessly run my fingers through or brush what used to be a mane. Showering one day, viscous black seaweed is suddenly

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in my hands, and I am semi-bald. Following cycle two Martin shaves the remnants. The final humiliation? My gorgeous, fat, black eyebrows wither. Permanently. So treatment is erasing the visual tropes of my Russian-Polish, Ashkenazy Jewish ancestry, the intergenerational signifiers of her-story. Instead, with the visage of a pale egg, my new fashion statement, curated and FedExed by Sis, is a furry aviator hat, complete with ear flaps. My metamorphosis from woman to housebound, fractured femme is complete? How naïve. Because FEC-T also hurtles me into the menopause. On cycle one I have a period, by cycle two there is not a single drop of blood and I am divested of the ability to reproduce. No one suggests harvesting eggs prior to treatment. Chemically deleting the capacity to conceive creates a relentless wave of shock and grief, intensified by a subsequent, panic-stricken, google search which confirms that, in the UK adoption guidebook, I am now officially a pariah, a locus of contamination, on a par with Chernobyl. Any potential offers I make of unconditional love for a child trapped in a state institution will necessarily be cauterised by social services. So, I’m left with another life-long ‘disability’, no children. Instead I smile when I see kids, (but not too much, I wouldn’t want to look desperate), my stomach contracts, a physical yearning for a life I will never have. Sometimes I cry. Still. There’s SEX: erotic, carnal, unfettered by the sound of tiny feet, yes? Guess what? My libido, losing altitude in the early stages of chemo, now plunges into the Atlantic, a biological manifestation of the drugs, together with more than a modicum of self-loathing as my body and my future inexorably shifts into the liminal. And FEC-T neatly illustrates the risks of an ever-weakening immune system. Following each cycle of therapy in the chemo ward, the fittingly named ‘Sunrise Unit’ (smile, there’s free tea, sarnies and choccy biscuits, just look away while the woman in the next cubicle is puking up her guts), my white blood cells will lower. With my immune system open to acute infection, I’ll be jettisoned into a galaxy of illness far, far away, to the planet Neutropenia, located in the star system ‘It’s not looking good.’ Touching down I will, to limit the chance of infection from mere mortals, be whisked away by M. to either (a) gradually get better or (b) undergo a blood transfusion. Failing that? R.I.P. So, having been stabbed by the nurses in the chemo clinic with FUCKIT-ALL, to (hopefully) terminate cancer, I go home and shoot-up an ampoule of heavyweight steroid, to protect the precious white cells surviving F-I-A aka Fear.

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That’s poison (to kill cancer) plus poison (to protect me from the ‘treatment’ that’s killing cancer): P1 × P 2 = P 3 + v0μ1T. I crawl into bed, waiting for the vicelike grip of P3 + v0μ1T, a pattern that becomes blandly familiar as I take on the character of a Dickensian consumptive who’s caught the flu: shaking, sweating, itching, retching, coughing, joints and muscles groaning, concluding with me rising, phoenix-like, from my clammy sickbed. This Victorian novella is replayed every 21 days, each time I have chemo. What I fail to comprehend, as my hair vanishes, as I am robbed – within 42 days – of my procreative capacity, as the ‘change of life’ takes me oh so gently by the throat: daily flushing, night sweats, the heart galloping furiously fast, insomnia the new normal, is that I have a virtually obliterated immune system. Swallowing all those medical prophylactics helps me to believe, following cycle two, that I am not only shielded from Neutropenia but that I’m ok. This ‘high’ is aided by the spectrum of prescription drugs I’m taking, and which run the gamut from A (antibiotics) to T (Tramadol). Tramadol is prescribed for the aches of chemo. But I am guzzling it to ‘relax.’ One? Three? Why not a nice round number, say four? More? Ooo, go on then. This medicinal excess allows me to ‘float’ in the night, an inviting alternative to staring fixedly at the ceiling, interminably alert, desperate for sleep, for peace. Later, in the cancer ‘trip of a lifetime,’ the Macmillan counsellor informs me Tramadol is addictive. Rubbish I snort, I don’t have an addictive personality. Then I consider reducing the dosage, a thought I quickly reject. It’s necessary pain medication, given that all other conventional and alternative remedies for menopausal misery (including ‘Black Cohosh Herbal Tea’) are bloody oestrogen-based, and oestrogen production is the whole reason I’m in

Tramadol gets a gold star for dampening the electric firecrackers in my worn-out head the epileptic attacks this mess. Plus,

Right? Ok?

They give me PEACE OF

!!!FUCKING MIND!!! I reluctantly surrender hoarded blister packs of opioids only when my doctor, speaking slowly and gently, as to a truculent child, points out that Tramadol is ‘contra-indicative’ with Epilim (a.k.a. sodium valproate), which explains the continuing insomnia and the deterioration of the epilepsy. At night, a blissed-out zombie, drifting on the edges of

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REM sleep, I am oblivious to the drug-induced nocturnal stimulation of my cerebral cortex. The cumulative effect of chemo carelessly extinguishing my white blood cells, as it locates and terminates carcinomas, together with the toxic range of drugs designed to combat FUCK-IT-FUCK-IT-FUCK-IT, is that my ability to fight infection nosedives. I am now susceptible to every known pathogen, a medicalized body simultaneously expelling cancer and a woman increasingly ill. A clue is my thinning veins. In the Sunrise Unit in December, for cycle three, the nurse must viciously pierce me all over my hands and wrists before eventually locating an artery that, begrudgingly, absorbs the c-killer. Full of assorted drugs and delusion, a few days later I make my way excitedly to the airport to collect Sis, who has taken unpaid leave, crossed continents and time zones, all to spend time with me. A day later I feel lethargic, then disoriented, then disinterested. I simply can’t be bothered. To help her and Martin put up the Christmas tree, to wrap Christmas presents, to talk. Then I soil myself. Correction: I crap myself. Cleaned up I collapse into bed and Sis, worried, sits on the mattress. ‘Please! Don’t!’ I beg, for even her small frame transfers unbearable weight, and my tissue, parodying fibromyalgia, screams. The worst thing about this sensory overload is that ‘I’ separate out from the ones I love. I turn my face to the wall. Having orbited Neutropenia throughout Christmas, I finally escape the death star, my capsule crash-landing back onto Earth and into what is now The New Year. We celebrate with a proper meal, before Sis leaves for the States. As Winter turns to Spring however, much of what I eat has a metallic aftertaste and sticks to the roof of my mouth, I gradually have problems swallowing. Despite being plied with pills and gels to seduce the palate into accepting food, and to suppress infections such as ulcers, dry throat and thrush, towards the latter stages of cycle four food appears rather like a dish of seafood left out in a warm kitchen, covered with a gelatinous glaze in which there surely floats contagion. Such mouth-watering images are frequent throughout the final cycles of chemo and this movement of the opera ends with a spectacularly abject aria in which I projectile vomit up the walls and over the kitchen floor a cordon-bleu meal of fried eggs and fruit salad. On FUCKITY-FUCK? Then Never Ever Drop Acid. Of the citrus variety. In Purgatory: Herceptin and Back to (Relative) Health Finishing chemo heralds the onslaught of further countermeasures. Tests confirm I am amenable to Herceptin, and I compliantly trundle back to the Sunrise Unit for afternoon tea plus drip line, pumping in

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the cunning biological agent inhibiting oestrogen-based pre- cancerous cells. In tandem, I mechanically attend regular echocardiogram appointments which check my heart tolerance to the drug, ensuring I don’t keel over outside ‘Sainsbury’s’ clutching the mid-week shop, which would be a pisser after surviving six months and counting of IV toxicity. Finally, I start Tamoxifen, a capsule to slay potential cancer cells, which I’m taking for five years, yes? The oncologist calmly leaf’s through a comfortingly enormous medical file, from which she withdraws a piece of paper, scratches out ‘five’ and scrawls ‘ten,’ at a stroke doubling the timeframe of this jagged little pill. As repository-orifice for every single drug within the Breast cancer handbook, my endurance to ‘therapy’ does, however, offer one uplifting proof for a spiritual sceptic, I must now be indestructible if not immortal. Duly energized, I make the long drive up to Leeds to see Aunty Jan and, from a collection of her strays, I adopt an obese, antisocial cat. Back home, I demand a puppy. Life-affirming and pragmatic decisions? Tick. Or simply, If I don’t get up, get out and interact I’ll shortly be dead anyway. I am moving on. Until, that is, the mastectomy. Back in Hell: The Mastectomy I surface from sedation to a ward nurse ordering me out of bed, deep vein thrombosis is a risk to the comatose. Sitting up, my medical gown touches the left chest and I sense an almost-void where my breast used to be. This and the armpit are attached by short tubes to two plastic containers slowly, continuously, filling with a yellowish-red liquid. Utilizing the hi-tech gizmo proffered by the nurse, i.e. a plastic bag, I lift these and drag myself to the bathroom, and, as the leads aren’t long enough to dump them on the floor, decant my Hermes tote, avec chic ‘flask des body fluids,’ into le sink. I open the gown, then gingerly peel away a section of stained plaster and gauze staring, fascinated and repulsed, at the bloodied, puckered, scarred layer of skin that formerly held my breast tissue. No nipple. Not the material of nightmares then, just unspeakably sad. Chemo, secondary drugs, this amputation, are silently eroding the core of my ‘self.’ Who, what, am I? It’s also hard to lift my left arm and yet, assuaged by sedatives, I leer at the maimed reflection: S’fine…constrictedfleshaxillaryclearanceexcav ationcancerouslymphnodesdecimated. Hugging said bottles of Lucozade I pitter-patter tipsily back to the beckoning ward bed. Once horizontal that woozy satisfaction dissipates, replaced by piercing surgical pains along the chest wall: together with the worst case of cystitis I have had for 20 years. I beg for drugs, but they can’t get another IV drip in, as my post-chemo veins are

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close-to-knackered. No morphine. ‘How about some more ibuprofen?’ suggests the nurse. I mewl plaintively, I don’t want sweeties, I want relief, my brother and niece are due to visit. ‘You know,’ says the nurse, ‘you don’t have to see them’ and despite feeling guilty I cannot face a conversation about my deathly body and force a rictus grin to create the illusion of post-op recovery, not with the increasing pain in my vagina, my chest, my arm. And the fact that I no longer recognize myself. So, I ‘cancel’ in favour of ‘selfish time,’ in the well-appointed women-only ward, where the food is surprisingly tasty. February moves into March, and Martin and I return to Wycombe, where the surgeon shares good news. Pathology reports confirm calcification and tumours within the severed breast tissue, and infected cells in the lymph nodes of flesh detached from the armpit. I’d have been dead within a few months had I opted to keep my hair, breast and reproductive capacity. But, treatment doesn’t yet guarantee survival, perhaps explaining why, instead of elation, I feel battered, emptied out and Alone. So very alone. And A little Afraid. Especially as there’s more to follow. Cancer genomes are devious recidivists, so the oncologist sends me to the John Radcliffe Hospital again, to meet LINAC a.k.a. Linear Accelerator. LINAC uses radiotherapy, targeting and exterminating free-floating ‘risqué’ cells. As I’m being called in my mobile vibrates, it’s the husband of a terminally ill friend I made at the Sunrise Unit, with the worst news: Gill has just died from breast cancer

Yet the LINAC team must prep me. Now. This requires lying completely still as the nurse marks my skin with felt tip. Which is difficult, spread-eagled, stark-naked, except for a glum pair of black cotton high legs, single-breasted, hairless, face and neck covered in tears and snot. ‘Shall we stop?’ asks the nurse gently. I think of Gill, the surreal conjunction of her death with my preparation for LINAC’s ‘high-energy’ radiation, a process purloining the syntax of 24-hour clubbing. ‘No!’ Sob-Gulp. ‘Do it!’ So that I can truly wail I select a track from their (impressive) playlist. We proceed with the markings as Editor’s ‘Spiders’ vibrates, then surges, through the cavernous room. I am parting from my friend in the only

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way possible, for the truth is that the death of someone I love, scarcely a few minutes ago, takes second place to the act of self-survival. There follow daily long, tedious and courtesy of a chronic attack of sciatica brought on by driving to multiple appointments but also through being otherwise sedentary for six months, excruciating journeys between Chesham and Oxford for radiotherapy. Trips that take the entire day. For 180 seconds of ‘hi-NRG’ zapping. Following the first week of cancer-cell execution I am myself annihilated. Grazing on my fist for a month to cope with compressed-nerve-agony does result in one fantastic reward, however: spinal anaesthetic, knocking the sciatica out of the proverbial ‘ball park.’ God, I love drugs. Then I wait to see if the side-effects of chemotherapy, mastectomy, radiotherapy, Herceptin plus Tamoxifen, not forgetting the glut of A to Zee of medicants, have destroyed cancer – or just me. The left arm swells with fluid, the embryonic stage of lymphoedema, for I no longer have nodes in the armpit necessary to filter bacteria. I schlep regularly to a clinic where they measure and contrast the circumference of my jellylike tissue against the right limb, massage away the liquid plus potential infection, and re-measure. Back home I rhythmically knead the flesh, reciting as I do the celebrated ode ‘mind-numbing , boredom beats further disfigurement and disability.’ Some weeks after the mastectomy, removing the chest plasters, I discern tissue, a protrusion to covet, a partial reprieve. But a consultant confirms this to be a lacuna, another invasion of lymphoedema, and this too requires the fluid to be carefully drained from the pocket of skin formerly known and loved as breast. I miss it. In Transit: Reconstruction and Recovery Prized throughout Buckinghamshire, my artificial mammary is complimented by nurses as reconstruction exemplifying ‘best practice,’ and followed frequently, in hushed tones, by tales of disastrous case-studies, ranging from tissue rejection to disfiguring microsurgery. My breast is re-built through a process known as DIEP-FLAP, which transfers muscle, tissue, blood vessels and skin from the lower abdomen to form a breast. The first and major stage of ‘renovation’ is performed in one 11-hour marathon-race-against-time, beginning with a Tummy Tuck and finishing with a Brand-New Breast being attached to the chest wall. ‘Tummy tuck,’ a fragrant expression, culled from a cosmetics industry seducing (mainly) women into processes of evisceration. Lying on a gurney, in the anteroom adjoining the operating theatre, images of mutilation sucker-punch, but serendipitously, the line between comprehension and inebriation blurs: general anaesthetic is hurtling through my veins.

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T.K.O. I lie inanimate, awaiting rebirth. As the operating team slice into my abdomen; cutting a swathe near vital organs such as bladder, uterus, liver, kidneys; heaving out blood, guts, muscle and fat; and carving from this matter my new breast. Not forgetting the navel which must be excavated and repositioned. My surgically levelled stomach is sutured before I bleed to death. I dream on, as the team rapidly yet deftly style an a la mode breast from my stomach viscera, pause to debate and dispute its aesthetic qualities, concur, ‘high-five,’ calibrate and finesse. They finish by transplanting this cultivated alien to my chest and, as living flesh requires continuous blood circulation, use microsurgery to painstakingly attach the slab to the torso, ensuring Every. Single. Blood Vessel. Is. Connected. All before tea-time. No wonder women, on being offered this plastic surgery, back out of the consultant’s room post-haste with a: ‘Thanks but no thanks, I’ll stay with a nice silicon prosthetic or failing that a piece of cotton wool I can insert in my M&S choice of two, no-silk, lace-free, black or beige, polyester “post-op” bra.’ Or maybe ‘nothing at all, ta.’ I, on the other hand, am determined to get my pound of flesh. Literally. I wake in the ICU in a state of confusion, in pain, and very hot. This is because it’s essential to keep the tissue heated for the first week, or it can be rejected by the ‘host(ess).’ When not ‘off my head’ on pain relief I’m desperate to escape the torment of my boiling, itching flesh. I am ‘crawl-along-the-corridor-walls-of-the-hospital-on-the-edge-ofhallucination-to-escape-pain’ ill, frantic to scratch at the wounds. Further, through bodily shock brought on by the op. ‘the menopause’ is belligerently climaxing: Heat + Flushing + Night Sweats = an experience I assume close to being spit roasted. Eventually, I escape the set of 12 Monkeys and return home to relax and recuperate. Or I would if I could turn on my front – that’s banned with my new breast – or on my side – ‘a-a, not with the risk of lymphoedema’  – my back? Out! Remember your L5S1 disc removal? Transcendental levitation? Giving up on respite I stagger to the bathroom mirror to admire my hard-won ‘reality make-over’ physique. An anatomy not only tumour-free, (for now), but as per ‘ye olde worlde fairy-tale,’ rejuvenated with the physical attributes of someone considerably younger and fitter: my stomach flat-ish; my torso symmetrical; my breasts shapely, pert, and likely to stay that way apparently. All’s well that ends well then…

OH…MY…GAAAARRRDDDDD I’m confronted by a hideous life form, one verifying my plasticsurgeon is Frankenstein. Head erratically pasted with hair clumps, face bereft of

Inscribing Comedy in the Breast Cancer Narrative eyelashes and eyebrows, countenance deathly pale. Stomach -

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Huh?

is

my Stomach? Where That ‘post-feminist-enemy-of-woman’ – fat, has been expunged,

‘abdomen,’

bulldozed. Yet, this location, previously known as isn’t polished or planed, for it carries, along its entirety, an

IMMENSE red tear, with massive, bloodied, serrated stitches. My belly button appears to be off-piste.

And the beauteously ‘buff’ breast? A ghastly malformed mound of flaps and scars

, its three-tone palette of yellow, red and white, complemented by – I don’t believe this – a

clear error. Somewhere during that restoration project, the blade slipped, resulting in a slash from cleavage to midpoint. 11 hours in surgery… Post-operative PTSD… To get the appearance of an Erect Corpse? Too fatigued to shriek I pop another Tramadol. Or four. As time passes however, a mutual respect emerges between plastic surgeon and patient, forged through a shared obsessive compulsive disorder relating to the artistry of lift, proportion, cleavage. The new breastshape, plus erroneous laceration, is refined through: corrective augmentation; liposuction; more liposuction; a reduction on my right breast; finishing with sculpting the figurative cherry on the cake, a nipple. And, the period for refurbishment and refit? This includes (a) waiting to find out if I’m to ‘pop my clogs,’ nine-ish months, give or take a carcinoma, plus recovery from tissue damage, cheers LINAC; (b) inching through the surgical waiting list, nine-ish months; (c) ‘recuperation’ from the major operation, add six months; (d) ‘surgical refinements,’ factor in another seven; and (e) multiply by rabid determination to get the best NHS plastic surgeon. Add it all up, spoiler alert, it’s a Longggg Timmme. Now enhance: scars diminishing at an imperceptibly slow rate, intense, chronic pain in the breast, arm, stomach, agonizing exertion bending to retrieve interminable memos from Bucks NHS and their contents: ‘Time for your 6-monthly mammogram! No. not your falsie silly, your  “vintage,” right breast………..Oh-Bad-luck-we’ve- seen-calcium-

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deposits-weknowit’s-excruciating-but-can-we-repeat-the-breast-compactingexercise-because-we-think the tumours are back?’ Yes, three years of treatment and reconstruction. And after all that? Dead. Again. That’s A (Agony) + (D) discomfort F + (Fear) × (M10) monotony = A. Alienation. Alienation from the aesthetics of my innovative, extra-terrestrial object, and detachment from – well – me. And The Here and Now? ‘Scars’ says Paula. ‘are beautiful, they are the signs you’ve lived’ and I negotiate and reconcile with those wounds, the bodily symbols of medical incursion and restoration. Dressed, I am a voyeur of my body, admiring my breast as a moulding which contributes to symmetry. I enjoy the weight, warmth, the liquid movement of flesh, my flesh. Naked, a disjuncture-acceptance narrative repeats, for this surgical creation remains distinct from my aesthetically pure, malignant, former breast. I gaze at the reflection in the bathroom mirror and touch my wounds, scars which echo my bodily narration of treatment, disfigurement, survival, rehabilitation. I scratch suddenly, urgently, close to the cleavage, six years on the scar tissue still itches. I consider the contrasting tones of the breast, then confront the discoloured line that runs the length of the abdomen. Upwards now. My hair, once upon a myth ago, long, poker straight, and dark brown, has finally stopped growing back like a discarded fishing net. Irrevocably altered - patchy, frizzy, thin - and increasing at an infinitesimally slow pace, it has finally reached my shoulders. I now can boast tight curls, the provenance of which appears to be an antebellum Southern Belle. I intermittently consider a buzz cut. The thick dark eyebrows which once framed my eyes? Virtually zero, but here I do have a less drastic solution. A thick eyebrow pencil works a treat. Estrangement, for me then, is frequent, yet fleeting. I blink and disease and treatment are re-absorbed into my body, a body to which I return reconciled, recognising the truth that we are all in the process of ‘becoming,’ continuously re-inscribing the ‘self.’

Conclusion Comedic autoethnography enables me to shed a layer of protective skin and thereby mourn, corporeal mutilation, potential children lost, time vanished, debilitating physical and mental illness. But also, to acknowledge the processes of rehabilitation and renewal, for my alien body, broken and re-built, informs my present and future narratives. Moreover, abject laughter reveals that cancer is not singular to my disability narrative. Does ‘cancer’ outrank epilepsy? The deformity of degenerative arthritis? Hearing impairment? Depression and anxiety? Ageing?

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Through writing a comedy-fable about my mutating ‘self’, I recognise that disease is embedded within my DNA. A cycle to be repeated until I die. That disability is a part of all of us. Ecriture also helps me appreciate how very lucky I am. My journey through treatment reflects, irreverently, immense gratitude to the NHS. For what saved my life was access to brilliant medical interventions, but also to the expertise, kindness and compassion of staff. All free at the point of use. I calculate the amount of my life spent in treatment, to date, to be somewhere roughly between 12 and 15 percent. Would I do it again? I would. Life is Luminous. And just a little funny. For my dear family and friends, and for the remarkable women I met on my journey through, and lost to, cancer: Gill, Helen, Tina. Rachel Velody, 15 February 2019

References 12 Monkeys. 1995. Film. Directed by Terry Gilliam. USA: Universal Pictures Bochner, A. and Ellis, C. 2016. Evocative Autoethnography: Writing Lives and Telling Stories. London: Routledge. Cixous, H., Cohen, K. and Cohen, P. 1976. The laugh of the Medusa. Signs: Journal of Women in Culture and Society, 1(4), pp. 875–893. Ellis, C. 2004. The Ethnographic I: A Methodological Novel about Autoethnography. Walnut Creek, CA: Altamira Press. HAL, an acronym for Heuristically programmed ALgorithmic computer, is the sentient antagonist and serial killer from 2001: A Space Odyssey, 1968. Film. Directed by Stanley Kubrick. UK: Kubrick Productions. Humm, M. 1991. Border Traffic: Strategies of Contemporary Women Writers. Manchester University Press. Jacobus, L.A. and Barreca, R. eds. 1999. Hélène Cixous: Critical Impressions (Vol. 1). London: Taylor & Francis.

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Knowing North Korea through Photographs of Abled/Disabled Bodies in Western News Micky Lee

In an increasingly globalized world, North Korea remains one of the few countries where little information flows out of the borders. That information is mostly disseminated from the Korean Central News Agency, the nation’s official news agency, which uniformly glorifies the leaders’ achievements and the country’s well-being. The Internet is only available to a few hundred government officials (Baek 2016; Ko, Lee, and Jang 2009). Foreign visitors’ movement is restricted and heavily monitored. In addition, they are not allowed to talk to the locals and their cameras are examined upon leaving the country. Accordingly, the everyday life of North Koreans remains a mystery to the outside world (S. Kim 2013). In the absence of reliable sources, non-North Korean journalists who wish to know more about the country have to rely on personal accounts of North Korean defectors and photos taken in North Korea by foreign photojournalists. These accounts and photographs are often said to be the most reliable evidence to show the uncensored truth about North Korea (Shim and Nabers 2013). However, I argue in this chapter that journalistic images of North Koreans need to be critiqued because of three reasons: first, North Korean defectors who were willing to be photographed for the Western press do not represent all defectors who, in turn, do not represent all North Koreans. Those who were willing to be photographed are more likely to be activists who wish to unify the two Koreas or overthrow the North Korean regime. Second, photojournalists played an active role in constructing the portrayals of North Koreans. Even though the government restricts the photojournalists’ whereabouts, photojournalists could choose to frame the subjects and curate the images for publication or exhibition outside North Korea (Choi 2015). Photojournalists could also use framing and lighting to portray North Korean defectors in a way that elicits desired responses from the viewers. Third, the North Korean government fully understands the power of images, so it carefully chooses sites for visitors to sightsee and photograph. What foreign photojournalists are allowed to see and photograph in North Korea are already images approved by the government.

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To effect a critique of how photojournalistic images of North Koreans construct knowledge of North Korea for an English-speaking audience, this book chapter examines some abled and disabled North Korean bodies published in photography books and mainstream publications in English. The body is a contesting site from which the meanings of North Korea and its people are made. While the North Korean government selected only abled bodies to display in public events, Western journalists highlighted the disabilities – physical and mental – of the defectors. Disability entails medical, social and embodied dimensions. From a medical perspective, disability is a physical or mental impairment that prevents individuals from full engagement in social lives. From a social perspective, disability results from social institutions’ exclusion of certain types of bodies. From an embodiment perspective, disability is an experience shaped by an individual’s body, psyche as well as the environment (Haegele and Hodge 2016). In addition, the meanings of the North Korean bodies are never neutral in the Western press because their bodies are supposed to be owned by the government (Baek 2018). As such, their bodies are public property that testifies the leaders’ brutal treatment of the citizens (Choi 2015). President George W. Bush has called the country part of the axis of evil (Bush 2002) and President Trump has called the North Korean leader Kim Jong-un a madman (Phillip 2017). To prove that the North Korean government channels all the resources to build up nuclear weaponry at the expense of providing for the citizens, North Korean bodies are used in the Western press to prove the dire living conditions in the country; the body – its physique, wounds, scars and blemishes – is, then, emblematic of the country’s political economic relations. In this sense, the body of a North Korean is argued to be a synecdoche of the country’s well-being. In light of the above, the first set of questions asked in this book chapter concerns how some abled/disabled bodies of North Koreans serve as sites of contesting meanings of the political economy of North Korea: first, how are North Korean bodies believed to reveal the uncensored truth of North Korea? How are viewers supposed to gain knowledge about the country through looking at the bodies of North Koreans? Because both the North Korean government and Western journalists compete to attribute meanings to the North Korean bodies, how does the North Korean government use uniform, abled bodies of military members to show the country’s strengths? To contrast the perfect images curated by the North Korean government, how does the Western press use disabled bodies to dispel those images and what is the purpose of doing so? At another level, the North Korean bodies are not only seen as evidence of the brutal deeds of the North Korean government but are also embodiments of North Korea itself. In other words, the bodies not only

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document the hard lives experienced by North Koreans, but they are also reflect uncensored knowledge about North Korea. In this sense, looking at the North Korean bodies is less about an interest in the individuals, but the country where the bodies used to locate. The act of looking at the bodies exerts control not only at the individuals but also the country. This act of looking is also gendered because a disabled body is often seen as less masculine than an abled one (Loeser, Crowley, and Pini 2017). This act of looking has implications on international political economy such as deciding on sanctions or reducing humanitarian aids (Choi 2015). Given the earlier point, the second set of questions asked are: how are the bodies said to embody the country? What are the gender implications of understanding North Korea when the bodies shown are disabled? How can North Korea be controlled through the act of looking at North Koreans with disabled bodies? In the following, I will first provide background information about defectors and the disabled population in North Korea. Then I will review relevant literature on gender and disability, as well as gender expressions in North Korea.

Who Are North Korean Defectors? North Koreans are forbidden to leave the country. The only exceptions are senior government officials, business people and workers sent abroad to make foreign money. For those who are permitted to leave the country, they have to leave a family member behind to guarantee their return. Defecting is seen as a treason; if caught, defectors may be sent to labour camps; repeating offences may lead to execution. During the famine in the 1990s, North Koreans could leave for China to find food and return to the country because the border was more porous. At that time, defectors could apply for a travel permit or illegally cross the border on foot after paying a bribe to border patrol soldiers. When the economy recovered, the Supreme Leader and the Chairman of the Workers’ Party of Korea Kim Jong-un tightened up border crossings. Defectors needed to pay brokers (who were mostly North Korean defectors) a large sum in advance to be transported to Mongolia or South Asia where they would contact the South Korean Embassy who will fly them to South Korea. After the South Korea government verified that the defectors were not spies, they were given housing and education. However, defectors are not allowed to return to North Korea once they are in South Korea. There are currently 25,000 North Korean defectors living in South Korea (Epstein and Green 2013), but a small number went to United States or Canada as political refugees. Since 2002, more women than men defected (M. Kim 2013) and most defectors came from a lower class background. Women defect more

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likely due to economic reason than political motivation (S. Kim 2013). Despite the fact that women are more likely to defect than men, news sources of the stories collected for the analysis mostly came from male defectors. The disproportionate number of male North Korean defectors shows the gendered nature of the defectors’ discourse. In addition, in the collected news stories, male defectors are more likely to talk about their disabilities and appear in news photographs. As will be explained later, a male body with disabilities may elicit more desired response from the viewers than a female one with disabilities.

How Is It to Be Disabled in North Korea? The body is a contesting site where meanings of North Koreans are made. It is impossible to know how many North Koreans have disabilities and the experiences of those with disabilities because the North Korean government does not provide any statistics about it. Information about disabilities usually comes from North Korean defectors who construct the meaning of disability based on their experience in North Korea; this experience, in turn, is mediated by the Western press. Traditional Korean culture that is influenced by neo-Confucianism believes that a person with a disability reflects bad character (Kim 2017). During Japanese colonization, Koreans resisted the foreign rulers by using the ‘disabled body’ metaphor to describe its subordinate status because direct resistance was condemned. After the Korean War, the disabled body continued to be a metaphor to describe its colonial past while ‘cure’ reflects the country’s independence. South Korean politicians and scientists strove to ‘cure’ all disabilities because they believed a recovered body means independence. The bodies of South Koreans were then moulded to achieve capitalist growth and economic development. Further, the trust in medical cure reflects the country’s wish to conform the body to ethnic superiority, gender conformity and heteronormativity (Kim 2017). Cho (2018) stated that the North Korean government explicitly excluded the disabled populations from class hierarchy that determines allocations of housing, food and jobs. A large number of North Koreans may experience physical and mental disabilities because the economic crisis from 1994 to 1998 has stunted physical growth and brain development among children and adolescents who grew up during the great famine (Greenberg 2015). In addition, defectors shared that North Korea operates a large number of prison camps in which prisoners are physically and mentally tortured (Wee 2018). Defectors also revealed that there is an enormous stigma of being disabled in North Korea. For example, a defector with a physical disability once fled to China to beg for food but was caught by the Chinese police who returned him to North Korea. He was subsequently punished by the

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North Korean police for showing his disabled body in China, which was deemed to embarrass the country (Choe 2018). Parents chose to commit infanticide when the babies were born with visible deformation such as lacking genitals (Harrison 2017). The little evidence shows that social stigma and the state’s exclusion rendered the disabled bodies invisible in the country.

Current Literature on Masculinity and Disability, Gender Expression in North Korea I will review three categories of literature in this section: (1) masculinity, disability and the body; (2) images of North Korean defectors in South Korean media; and (3) gender expressions in North Korea. Current literature has not discussed how North Koreans with a disability are portrayed in the media. Masculinity, Disability and the Body Scholars agreed that the body is a contesting site to make meanings of disability and masculinity. Gerschick (2000) suggested that the abled bodied population assigns an appropriate femininity and masculinity to a person with a disabled body. For example, an older male amputee is considered to be more feminine than a younger one. However, the disabled body destabilizes gender meanings because the bodies, both abled and disabled, are unstable; they are ‘unfinished materialities that gain meaning through various forms of symbolic representation and material practice’ (Loeser, Crowley, and Pini 2017, xliii). The disabled body refuses to be symbolically neutral: as a trope of physicality, the abled population sees a disabled body as a body too much, too real and too corporeal (Samuels 2014). To Gerschick (2000), the body enacts gender. In some historical and religious contexts, gender norms were associated with bodily norms, and disability was associated with femininity (Samuels 2014; Serlin 2017). Medicine, laws, traditional expectations and social conventions use the disabled male body as a physical object and a psychic space to project bodily norms (Serlin 2017). Adding to these, Loeser, Crowley and Pini (2017, xxvi) believe that both disability and masculinity are expressions of embodied subjectivities. They rejected a medical perspective from which the body is essentialized into active or passive, male or female, abled or disabled. Instead they advocated for a post-essentialist perspective that allows ‘the disabled masculine subject to be heard as a materiality that is (re)constructed in and through changing historical, social and discursive condition’ (ibid.). This post-essentialist perspective acknowledges that the bodies and selves are unfinished; they evolve amid ‘competing truths that are productions over time, place, space, geography, and culture’ (xlvi).

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Some scholars pointed out that technologies are not external to the body; instead the body is an assemblage of the technological and the organic. For example, Parlati (2015) asserted that technologies extend the body’s surface and produce masculinity across surfaces of bodies. For example, prosthesis of athletes is not only a medical aid but also part of the body to show the resilience of the masculine athletes. Adding to this, Moser (2006) believed that medicine and technologies were involved in the interactive and interfering processes of making and unmaking differences such as disability, gender and class. She further showed that specific material practices and locations shape the realities of being disabled, and these realities are neither given nor fixed. Garland-Thomson (2002) related the history of photography with that of people with disabilities. Staring at the disabled body creates discomfort among the middle-class viewers, so photography permitted a socially acceptable form of staring. She suggested that different narrative rhetorics all mark the disabled bodies as being different. Sahn (2017) looked at another way through which staring at the disabled bodies becomes more socially acceptable. She noticed how wounded soldiers were portrayed in mainstream films and argued that a disabled body made the soldiers more vulnerable and less masculine; therefore friendship between male soldiers with physical disabilities can have a homoerotic undertone which is more readily accepted by the audience. Images of North Korean Defectors in the Media Scholars examined how North Korean defectors were portrayed in South Korean television, in particular how they can gain full citizenship through forming small families (Cho 2018). Talk shows that invited North Korean defectors as guests encouraged the audience to see North and South Koreans as ethnically identical, yet their backgrounds in different sociopolitical systems are marked as being different (Epstein and Green 2013). The bodies of women defectors have become objects of desire; they are believed to be purer than South Korean women’s (Epstein and Green 2013) but ones that have experienced hunger and poverty (Park 2016). To gain full citizenship, North Koreans have to mould their bodies to conform to gender expressions such as adopting the South Korean accent to show their ability to adapt and to exercise self-control (Park 2016). Just as the South Korean media see North Korean women as exotic objects, Western media also see Korean women in the same way. Novels about the Korean War portrayed Korean women as hypersexual prostitutes who are childlike and primitive (Piao 2017). They were seen to pose threats to Western society by endangering the domestic household and robbing the sexual propriety of Western females. Few studies looked at how North Korea was visually represented in international politics. Shim (2014) examined how photojournalistic images of poverty and satellite images of the country are detrimental to

100 Micky Lee foreign policies exerted from the West on North Korea. Along with Shim (2014), Shim and Nabers (2013) suggested that North Korean imageries are full of contradictions: on the one hand, pictures of military parades implied that the country is dangerous; on the other hand, pictures of poverty elicited sympathy from the Western viewers. Gender Expressions in North Korea Scholars agreed that gender expressions in North Korea follow socialist tenets, yet they deviate from the former Soviet Union and China by highlighting the importance of family in revolution. North Korean leaders were argued to have adopted the mother figure for nation-building (S. Kim 2010, 2014). The mother, who was seen to be selfless, became a revolutionary model because she tirelessly sacrifices for her children. This mother figure became a generic term for parents, which encompasses both male and female genders (Kim 2014; Ryang 2000). However, North Korea did not have a term for women (Ryang 2000): females are called youths, mothers or workers, but not women. North Korea’s state-designed feminism is patriarchal in nature. For example, Kim (2011) argued that the government centrally designed and monitored women’s fashion in the post-Korean War era. Women’s clothing was used to uphold ethnically marked national femininity. However, women’s fashion marked women as a difference because they had not entered the public sphere before liberalization. In contrast, men had always been in the public sphere, so they did not need to gain legitimacy through fashion. Lee (2009) suggested that women boxers were not described in a stereotypical or sexual way in the North Korean media. However, women athletes were said to be daughters of the leaders. Kang (2008) added that despite the guarantee of gender equality, women were expected to submit to their husbands. Their economic production outside the home was out of necessity rather than empowerment. Current literature will help understand how the bodies of North Koreans with disabilities may be seen as feminine, how North Koreans are portrayed in the media and how North Koreans understand the female gender. Current literature however has not analysed how the bodies of North Koreans are portrayed in the media and how the bodies serve as sites of contesting knowledge of North Korea.

Methods To examine the images of abled/disabled bodies of North Koreans taken by non-North Korean photojournalists for the Western audience, pictures of military parades and defectors were chosen. North Korean government permitted foreign journalists to photograph some public events such as military parades; hence the marching participants were

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considered to represent the nation to the outside world. In contrast, North Korean defectors are supposed to be free from the control of the North Korean government, so they are assumed to provide real evidence of the everyday lives in North Korea. Thirty-four parades pictures were collected. They came from photography books published in Germany, South Korea, the United States and the United Kingdom. The pictures were taken from the Korean War to 2018. The photographers’ nationalities are Belgian (Carl De Keyzer), German (Julia Leeb and Eva Munz) and Romanian (Adelin Petrisor). The five titles are: D.P.R. Grand Tour (De Keyzer 2018), The Ministry of Truth: Kim Jong-Il’s North Korea (Munz and Nikol 2007), North Korea: Anonymous Country (Leeb and Karasek 2014), North Korea Caught in Time: Images of War and Reconstruction (Springer 2010), and A Weekend in Pyongyang, North Korea (Petrisor 2016). Other than North Korea Caught in Time that collected historical pictures of the Korean War, the other four titles collected pictures of the ‘everyday lives’ in contemporary North Korea. Some of the pictures collected in the books are sold to news agencies that licence the pictures to news outlets. In this case, journalists re-inscribe meanings of the pictures because they may have little idea of the circumstance under which the pictures were taken. Other than D.P.R. Grand Tour, all photography books begin with an essay that discusses why the subject matter North Korea is important to be photographed. Leeb and Karasek (2014) aimed to put a face on the unknown people in North Korea; Kracht (2007) captured events staged by the government; Petrisor (2016) documented the 100th Anniversary of Kim Il-sung’s birth; Szalontai (2010) used declassified materials to understand the role of North Korean leaders in the Korean War. All essays collected in the books are critical of the North Korean government. Pictures of North Korean defectors came from publications aimed for an English-speaking audience. I used the key words ‘North Korea defectors’ to generate news articles by using Google Search (Google.com). A commercial search engine was used instead of a specialized database because I am more interested in knowing what articles will be generated for a general reader. It has to be acknowledged that my geographical location (United States) and preferred language (English) affected the search results. If I were to conduct the searches in another country with another preferred language, the search results would be different. After removing articles that have little context and irrelevant topics, 29 news articles from US outlets (ABC News, NBC News, New York Times, USA Today, Newsweek) were collected among which nine had pictures of defectors. The interviewed defectors talked about their daily lives in North Korea, how they left and settled in South Korea. No article was critical of the defectors. The pictures were taken by photojournalists working for newspapers and news agencies; some were supplied by activist groups. The pictures consisted of profile shots, snapshots of

102 Micky Lee the everyday life in South Korea and spot news photos. Not all defectors were said to have a disability; defectors who were said to have a disability may not visibly show it in the photographs. Twenty-five photos were collected and analysed from an aesthetic perspective; attention was paid to the use of framing, lighting, composition and mise-en-scène (setting, clothing, objects). The images were also analysed in the context of written texts (caption, article title and the body text).

Photos of the Soldiers In this section, the abled bodies of military members marching in parades are compared to the disabled bodies of defectors in order to show how the bodies serve as sites of contesting meanings of the political economy of North Korea. Photography authorizes looking which creates the disability as an absolute difference (Garland-Thomson 2002). This way of looking is also gendered because it is an act of domination: men take up the active role of looking while women accept to be looked at (Berger 1972). The body with a disability – regardless of the gender identified by the person – is made passive by being looked at. The abled bodies are staged by the North Korean government who is highly aware that these bodies are photographed for the Western audience. Accordingly, pictures of military parades are some rare images that the government distributes to the rest of the world via the state news agency. The government may be motivated by the desire to show the world a strong image of North Korea by displaying soldiers with not only abled but also identical bodies in synchronous movements. However, the staging of bodies is met with suspicion from photojournalists. For example, the essay in Kracht (2007) reads that North Korea is a gigantic installation, a staged show for both visitors and residents. Another one wrote: ‘the country has deluded itself with what can sometimes be a rather absurd self-image, so that the nearly infinite amount of deceptions and fables have ultimately become an accepted reality for the nation’s twenty-four million inhabitants’ (Karasek 2014, ii). These essays contextualize mass parades pictures which were captured to show the façade that the North Korean government put up for the world. Military parades and mass games that, respectively, took place in the Kim Il-sung Square and Rungrado May Day Stadium were two events to which foreign photojournalists were invited. Kim Il-sung Square constructed after the Korean War was designed for mass gatherings. Rungrado May Day Stadium, built in the mid-1980s, was branded as the largest stadium in the world. The massive sizes of both public places are meant to illustrate the country’s strength. Among all photography books, Petrisor (2016) devoted his book to documenting the parade preparation by showing the marches of different military branches. The use of very long shots and long shots as well as the wide depth of field

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emphasizes the mass of soldiers rather than the individuals. Even though some soldiers were framed in a medium shot and others had standalone roles, the posture of their body – rather than the facial feature or the expression – was the point of interest. For example, Petrisor (2016) framed a lone soldier – the parade opener – in a long shot in which he was positioned in the centre of the frame. The picture captured the posture of his body from the side: the arched right arm that holds the flag pole, the straight back and the lifted right leg were all highlighted against a blurry background. The face has little details because of low contrast lighting. Set against an overexposed background, the soldier was almost like a silhouette with little details that shaped him as an individual. He was portrayed as the prototype of a North Korean soldier instead of a North Korean who happens to be a soldier. The legs of the marching soldiers were the focus of many pictures. In Petrisor (2016), the uniformly raised legs of soldiers form a horizontal line that divides up the picture into halves. In some cases, only the hips and legs of the soldiers were shown. The spectacle of the parade derived from the lack of difference among the bodies; all soldiers look identical due to the height, body shape and the lack of facial expression. Contrary to the state’s desire to show the nation’s strength, visual fragmentation of the body may symbolize the government’s violence against the citizens’ bodies (Choi 2015). Leeb and Karasek (2014) stated that it was forbidden to take pictures of soldiers when they were not marching; yet they captured a moment when the soldiers were waiting for the parade to commence. The two dozen soldiers adopted different postures – some crouched, others stood with their arms folded in the back – and showed different bodily expressions – some yawned, some laughed and some listened to others talking. This ‘backstage’ picture de-emphasized the bodies and highlighted the individual differences; the showing of individuality is probably the reason why the North Korean government forbids photographers from taking ‘off stage’ pictures of soldiers. Gender, marked by uniform, is the only difference among the bodies in the military marching: some women soldiers wear skirts and their jackets highlight the bust. In Leeb and Karasek (2014, 120), the bare legs that extended to part of the thighs attracted the viewers’ attention. While socialism in China erases gender difference (Zhang 2016), the North Korean branch allows for gender difference. Women are expected to uphold ethnically marked national femininity (Kim 2011). In the case of China, the identical bodies in military parade implied the government’s demands for citizens fashioning and refashioning their bodies in order to meet the country’s goal (Zhang 2016). In the case of North Korea, the government sculpted and selected identical bodies to show uniformity among citizens while highlighting fixed gender difference through military uniform and body shape.

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I have so far explained how the North Korean government curates uniform, abled bodies of military members for the Western press to photograph. While the North Korean government may want to show the country’s strength, the essays that introduced the photography books asked the readers to see the abled, identical bodies as guises that conceal the truth of North Korea. By focusing on the mass and sometimes fragmented bodies, photographers refuse individuality among North Koreans and objectify them (Shim 2014).

Photos of the Defectors Another way to reveal the supposedly concealed truth is to photograph North Koreans who are not staged by the state. Defectors who live in South Korea and the United States were photographed to show bodies of the ‘real’ North Koreans who are no longer controlled by the government. However, photographs of defectors are not neutral presentation of the bodies because they were staged by the photographers who selected particular lighting, setting and framing. All these techniques ask the Western readers to understand the bodies as evidence of defectors’ history and life experience. The photographed bodies are also accompanied by captions and written texts in the news stories. As mentioned previously, not all defectors were said to have a disability and not all physical disabilities were shown in news photos. One defector with a visible disability is Ji Sung-ho whose left leg was amputated after an accident in North Korea. In a picture appeared in the US news network ABC (Reuters 2018), Ji was shown standing with a pair of wooden crutches. High contrast and hard lighting casted a pronounced shadow of the crutches on the floor while highlighting the texture of the unpolished wood on the crutches and the equally harsh texture of his face. Because the light was shone from Ji’s right hand side, the edge of the pant that covered the amputated leg blended into the shadow on the dark blue screen in the background. The use of lighting first drew viewers’ attention to the crutches, then his bare arms and weathered face, next his shoeless right leg, and finally the black t-shirt. The missing left leg was obvious, but the use of lighting did not give a clue where his left leg ends. Shadow was used to draw attention from the absence to the presence (i.e. from the missing leg to the rest of the body) even though its absence made Ji the news subject. Ji’s physical disability was not apparent in three other news photos. In a New York Times picture (Choe 2018) taken at President Trump’s State of the Union address, Ji was honoured by attendees. Wearing a pair of glasses and dressed in suit, Ji’s disability was only implied by him holding up the same pair of wooden crutches. He was probably wearing a prosthesis because of the balanced posture. The formal suit and the soft lighting on his face made him almost unidentifiable as the

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shoeless defector with a disability in the Reuters picture. The Reuters picture transported him back to North Korea where he was disabled and poor (as reflected from the bare feet and the harsh texture on the face), a victim under the North Korean government. In contrast, the New York Times picture cast him as a victor who defected the North Korean government. The same pair of wooden crutches symbolizes his triumph because he was almost rid of his disability and has regained his mobile independence. His freedom from the country was reflected from his freedom from disability; the prosthesis is therefore not a bodily aid, but part of his new independent self. A case of picturing an invisible disability was that of a defected soldier who was shot when crossing the demilitarized zone between North Korea and South Korea in November 2017. The highly dramatic event captured international attention, but what sparked fascination were the parasite worms inside the body, not the wounds on his body. A photo released by the United Nations Command through Reuters (Persio 2018) showed a motionless body on the ground slumping against a wall. The image from the surveillance camera was grainy, making it impossible to see the wounds and the bleeding. The wounded soldier was sent to surgery and the worms inside his body became the objects of curiosity for first the South Korean doctors, then the press. In a picture issued by Yonhap (a South Korean news agency that mainly supplies news domestically but also contracts with non-Korean news agencies and publishes in multiple languages), a doctor stood next to a headless mannequin pointed at a low-contrast, black and white picture on a screen on which an image of four parasite worms were enlarged. The news story said that the doctor found an ‘enormous number of parasites’ (Chandran 2017, para. 2), ‘some as long as 11 inches’ (Choe 2017, para. 2) inside the body. The mannequin was used to represent the soldier’s body on which two big red dots were pierced at the left shoulder and the right arm signifying the gun wounds. The North Korean body was not only made passive, but indeed became an object that could be manipulated for medical purpose and displayed for the public in the name of science. The disability was implied to be temporary because medical treatment in South Korea was advanced enough to undo the damages done by the North Korean government to the citizens. At the next level of interpretation, woes of North Korea (i.e. poverty, backwardness, hunger) could be eliminated through medical knowledge and technological means in the capitalistic south (Kim 2017). The foreign objects (i.e. the worms) that had caused the disability provided a case of curiosity to South Korean doctors who were quoted to have said they have only seen examples like these in school textbooks. Even though parasites could be found in any human body, they are believed to be indigenous to bodies of the Other. But the worms may also be seen as North Korea – an unknown, unseen foreign object to the

106 Micky Lee South Korean public. Yet, like Ji’s missing leg, the worms are not clearly shown; they are only grainy images. The worms are seen as concrete evidence of North Korean government’s brutality; yet the evidence is never clear enough. Because the abled bodies in military marching are seen as bodies controlled by the North Korean government, Western journalists challenge the meanings that the North Korean government wishes the viewers to make. Photojournalists point out the guise by presenting the ‘real’ bodies of North Koreans. Because the country cannot be seen or known without the North Korean government’s interference, defectors’ bodies serve as sites where the brutality of the government can be known. While the missing leg and the parasites testify the brutality, they are also obscured from views. This contradiction will be explored after an analysis of news discourse.

Contextualizing Photojournalistic Images in News Discourse The meanings viewers make of the images of defectors’ bodies have to be contextualized in the belief that the North Korean government owns the bodies of the citizens. A news story reported that North Korean citizens are indoctrinated to believe their bodies and labour belong to the state so ‘dying for the Kims was the most honourable sacrifice one could make’ (Park 2017, para. 2); ‘[prisoners] are told [that they] had been offered redemption through labor for their country. Instead, they chose to reject the generosity of the country’s government. After this they are simply executed’ (Ferson 2012, para. 9). Academic studies have also suggested that loyal citizens see themselves as mothers who selflessly sacrifice for fellow citizens and the country (Kim 2010, 2014; Ryang 2000). State ownership of the bodies implies it can control and manipulate the bodies. For the women soldiers, their bare legs are highlighted in photographs to show how the state can mould women’s bodies to reinforce national ethnicity for nation-building. In the Western press, the inability of the state to take care of its citizens is illustrated by the illnesses, diseases and deformation experienced by the defectors. The story of Ji Sung-ho, the defector with a prosthesis, was told to many journalists who spared no details of the grotesque circumstance under which he lost a leg. In order to search for food, Ji jumped between freight trains to steal coal to sell in the black market, he fainted and when he awoke, he was lying on the tracks, his left leg dangling by a tendon. He recalls trying to stanch [sic.] the gushing blood, before realizing that three of his fingers had also been sheared off when a train ran him over Fishman (2018, para. 26)

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Later he received no painkillers or blood transfusion during the surgery while ‘the surgeon sawed off bones’ (para. 27). Ji described the same scene in equally chilling details for the New York Times: ‘“I could feel my spine rattling as [the doctor] sawed off my bones” […] “I could hear blood dripping into a basin underneath. The doctor kept talking to me to keep me from passing out”’ (Choe 2018, para. 10). Ji was not the only defector who fully experienced the amputation procedure; another defector who later became a South Korean paralympian had his leg ‘amputated the area below his left knee without anaesthesia. [The defector] fainted because of the excruciating pain and lapsed in and out of consciousness for about a week’ (Kim 2018, para. 13). The lengthy description of how a body became disabled showed the harsh living condition and rudimentary medical care in North Korea. The graphic description of how a body became disabled sharply contrasts the sterile photos of defectors with physical disabilities. While news stories favour a grotesque description of the process of becoming disabled, the photos only gave hints at the disability. The news pictures lured the viewers to look at the defectors but the pictures refused to reveal the disabled bodies. This contradiction may need to be situated in a yet broader international political economic context by asking why North Korea needs to be known.

Contextualizing the News Discourse in International Political Economy So far I have shown in a visual analysis that the abled bodies in military parades are received with scepticisms from journalists who suggested that the parades are façade staged by the government. Another visual analysis of the disabled bodies of defectors in the Western press shows that disabilities are concealed in pictures even though the written texts vividly describe the process of becoming disabilities. To understand why such contradictions exist, the Western news discourse needs to be contextualized in US-North Korea international relations. North Korean leaders understand the power of images in establishing its international standing. Therefore, state-released pictures overwhelmingly show nuclear facilities and military parades that are deemed to show the nation’s strength. However, these hypermasculine militant images were ridiculed by Western leaders who questioned the rationality, sanity and even sexual potency of North Korean leaders. For example, George W. Bush categorized North Korea as part of the ‘axis of evil,’ announcing ‘North Korea is a regime arming with missiles and weapons of mass destruction, while starving its citizens’ (Bush 2002, para. 18). Further, Donald Trump called Kim Jong-un a ‘madman who doesn’t mind starving or killing his people’ (Phillip 2017, para. 3) as well as a ‘little rocket man.’

108 Micky Lee The earlier quotes further dismiss North Korean leaders’ political competency by implying they are not able to nourish the body of the citizens because they channelled resources to develop nuclear weapons. The ‘true’ North Korean bodies are then not believed to be the ones seen in parades, but ones that are hungry and starving. Shim (2014, 29) wrote that media images created an expectation for visitors to see starving people in the streets: ‘it is only when starving people in North Korea can be observed that life in the country can be said to be and feel real.’ In the news discourse, the starving body has also become the nation. For example, North Korea was described as a ‘hungry nation’ (Wee 2018, para. 38) and a ‘starving country’ (Greenberg 2015, para. 33). If the nation is starving because the citizens are believed to be hungry, then the nation is also disabled because some defectors are shown to have disabilities. North Korea is disabled because of its political economic system: South Korea sees a communist nation, as much as a colonized one, as disabled. If this is the case, the viewers are not only invited to search from the defectors’ bodies evidence that shows the brutality of the government but also asked to witness a starving and disabled country embodied by the North Korean bodies. When a body embodies a country, and when the body invites Western viewers to look, this acting of looking is gendered. First, essentialist thought sets up the binary oppositions between masculinity and femininity as well as the abled and disabled body while associating masculinity with an abled body (Loeser, Crowley, and Pini 2017). An abled body is seen to be the basis of autonomy and bodily agency, qualities that have traditionally been associated with adult males. This is the image that North Korea wishes to project to the world through the bodies of military members. A person with a disabled body – regardless of the gender identified by this person – is seen as less masculine and less an adult. This is the image the Western press wishes to show through the military members’ fragmented bodies and the defectors’ disabled bodies. When the news discourse likens North Korea to be a person with a disability, it denies the country’s full autonomy in making political economic decisions. As a result, the international community often condemns the government’s irrational decisions and tries to contain its madness by extending measures such as trade embargoes. For example, after North Korea’s first nuclear test in 2006, various UN sanctions banned the imports and exports of military supplies, crude oil and minerals hoping to starve off North Korea’s nuclear ambitions. However, Hastings (2016) argued that North Korea’s testing of nuclear power is nothing but a very rational political economic decision because it believes that nuclear testing and economic development could go hand in hand. He reasoned it by arguing that economic sanctions force North Koreans of all social classes to engage in licit and illicit trades, which result in vibrant informal economies that rescue the populations from starvation.

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The second way in which North Korea is gendered is through looking at defectors with a disabled body. This act of looking exerts domination on the person as well as the country that it embodies. As Sahn (2017) suggested, disability of adult males renders the body as an object of the gaze, effectively controlling the body through looking. Looking at females with a disabled body has less an effect of domination because as Berger (1972) argued, women are socialized to expect their bodies to be looked at and dominated. As suggested, women defectors are already objects of desire in South Korean media. Their bodies are already assumed to be more feminine because they are weaker and thinner (Epstein and Green 2013). Popular fictions about the Korean War also labelled Korean women bodies as primitive and childlike (Piao 2017). Disability on the female bodies does not make them more an object of gaze because being (North) Korean already made the body one.

Conclusion The little information flowing out from North Korea made the everyday life in this country a mystery. Photojournalistic images of military parades and defectors are assumed to be some of the most reliable accounts that tell the ‘truth’ of the country because of the common belief that photographs don’t lie. This book chapter rejects this assumption by looking at some abled/disabled bodies of North Koreans. It is argued that North Korean bodies serve as sites of contesting meanings between the North Korean government and Western journalists. The North Korean government is well aware of the power of images, so it staged military members of not only abled, but also identical, bodies to show strength of the country. However, Western journalists see those images as façade that conceals the truth of North Korea. Western journalists inscribe a different meaning of the bodies intended by the North Korean government by presenting the mass and highlighting certain body parts. By doing so, they deny individuality and fragment the bodies. Another way to reveal the truth concealed by the government is showing the disabled bodies of defectors. Because defectors are seen to be free from state control, their bodies are testimonials of the history and life experiences in the country. However, the use of lighting, framing, and camera angle create meanings of the disabled bodies: photojournalists can present a defector as a victim in one photo but a victor in another. Interestingly, even though disability made the defectors a subject of news value, their bodily defects are hidden from the viewers. The pictures lure the viewers to look but deny them a clear view at the same time. The images of the defectors’ bodies, when contextualized in the news discourse, further show that North Korean bodies became an embodiment of the country. Because the country is believed to be an unknown and unseen object, so the North Korean body offers an access to the

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country. In the news discourse, North Korea is often said to be a ‘hungry’ country because of its starving population. In the same way, the country is also a ‘disabled’ country because of the number of defectors with disabilities shown in the Western media. If North Korea is indeed seen as a disabled nation, then the international community can deny political economic autonomy to it, making the country a body/entity to be controlled. The paradox of photographing the North Korean bodies with a disability is that while the process of becoming disabled was vividly described in words, the bodily defects were seldom clearly shown. If the body is believed to be a reliable, if not the only, access to understand North Korea, then why do the photographs conceal the bodies? This contradiction may be explained by taking the ontology and the epistemology of North Korea into account. What if the ontology of North Korea is secondary to the epistemology between the viewers and the object of the gaze? In other words, it is possible that the more important question is not what North Korea is, but how North Korea can be known. In this book chapter, I have shown that photographing and looking at the bodies are two methods of knowing, and both methods exert domination from the photographer and the viewers on the subjects. In this vein, the bodies with disabilities may not be too different from other images that embody North Korea (such as young women, natural scenery) because the objects to be looked at are less important than the power gained through looking at them.

References Baek, Jieun. 2016. North Korea’s Hidden Revolution: How the Information Underground is Transforming a Closed Society. New Haven, CT: Yale University Press. Baek, Jieun. 2018. “When Your Body Belongs to the State.” Index on Censorship 47(4): 36–38. Berger, John. 1972. Ways of Seeing. London: Penguin. Bush, George W. 2002. “President Delivers State of the Union Address.” The Office of the Press Secretary, January 29. Accessed 26 April 2019. https:// georgewbush-whitehouse.archives.gov/news/releases/2002/01/2002012911.html Chandran, Nyshka. 2017. “Defector’s Condition Reveals North Korea’s Parasite Problem.” CNBC, November 16. Accessed 26 April 2019. www.cnbc. com/2017/11/16/body-of-north-korean-defector-full-of-parasites.html Cho, Eun Ah. 2018. “‘Becoming’ North Koreans: Negotiating Gender and Class in Representations of North Korean Migrants on South Korean Television.” Cross-Currents: East Asian History and Culture Review 27: 26–50. Choe, Sang-hun. 2017. “Surgery Reveals North Korean Defector is Riddled with Parasitic Worms.” New York Times, November 17. Accessed 26 April 2019. www.nytimes.com/2017/11/17/world/asia/north-korean-defector-parasiticwor m s . ht m l?mt r ref=w w w. go o g le . c om& g wh= E B 0 E D12 A0 E10A D 721719698B2E3DB2E2&gwt=pay

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Choe, Sang-hun. 2018. “North Korean Defector, Honored by Trump, has a Remarkable Escape Story.” New York Times, January 31. Accessed 26 April 2019. www.nytimes.com/2018/01/31/world/asia/north-korean-defector-trump.html Choi, Shine. 2015. Re-imagining North Korea in International Politics: Problems and Alternatives. Oxon: Routledge. De Keyzer, Carl. 2018. D.P.R. Grand Tour. Tielt: Lannoo. Epstein, Stephen, and Christopher Green. 2013. “Now on the Way to Meet Who? South Korean Television, North Korea Refugees, and the Dilemma of Representation.” The Asia-Pacific Journal 11(2): 1–14. Ferson, Paul. 2012. “North Korean Citizens Become More Globally Aware via Piracy.” Neowin, May 26. Accessed 26 April 2019. www.neowin.net/news/ north-korean-citizens-become-more-globally-aware-via-piracy Fishman, Margie. 2018. “3 North Korean Defectors Visit Delaware to Express Thanks.” US News and World Report, April 7. Accessed 26 April 2019. www.usnews.com/news/best-states/delaware/articles/2018-04-07/3-northkorean-defectors-visit-delaware-to-express-thanks Garland-Thomson, Rosemarie. 2002. “The Politics of Staring: Virtual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56–75. New York: MLA. Gerschick, Thomas J. 2000. “Toward a Theory of Disability and Gender.” Signs: Journal of Women in Culture and Society 25(4): 1263–1268. Greenberg, Andy. 2015. “The Plot to Free North Korea with Smuggled Episodes of ‘Friends’.” Wired.com, March 1. Accessed 26 April 2019. www. wired.com/2015/03/north-korea/ Haegele, Justin Anthony, and Samuel Hodge. 2016. “Disability Discourse: Overview and Critiques of the Medical and Social Models.” Quest 68(2): 193–206. Harrison, Bruce. 2017. “North Korean Defectors Say Nuclear Tests have Ravaged their Health.” NBC News, December 3. Accessed 26 April 2019. www. nbcnews.com/news/north-korea/north-korean-defectors-say-nuclear-testshave-ravaged-their-health-n824521 Hastings, Justin. 2016. A Most Enterprising Country: North Korea in the Global Economy. Ithaca, NY: Cornell University Press. Kang, Jin Woong. 2008. “The Patriarchal State and Women’s Status in Socialist North Korean.” Graduate Journal of Asia-Pacific Studies 6(2): 55–70. Karasek, Niko. 2014. “Foreword.” North Korean: Anonymous Country, i–vi. Kempen: teNunes. Kim, Eunjung. 2017. Curative Violence: Rehabilitating Disability, Gender, and Sexuality in Modern Korea. Durham, NC: Duke University Press. Kim, Mikyoung. 2013. “North Korean Refugees’ Nostalgia: The Border People’s Narratives.” Asian Politics and Policy 5(4): 523–542. Kim, Shinui. 2013. “Why are the Majority of North Korean Defectors Female?” NK News, July 31. Accessed 26 April 2019. www.nknews.org/2013/07/ why-are-the-majority-of-north-korean-defectors-women/ Kim, Suk-young. 2011. “Dressed to Kill: Women’s Fashion and Body Politics in North Korean Visual Media (1960s–1970s).” Positions 19(1): 159–191. Kim, Suzy. 2010. “Revolutionary Mothers: Women in the North Korean Revolution, 1945–1950.” Comparative Studies in Society and History 52(4): 742–767.

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Kim, Suzy. 2014. “Mothers and Maidens: Gendered Formation of Revolutionary Heroes in North Korea.” The Journal of Korean Studies 19(2): 247–289. Kim, Tong-Hyung. 2018. “North Korean Defector Hits Paralympic Ice for South Korea.” AP News, March 13. Accessed 26 April 2019. www.apnews. com/ec10c6b32974498d9964dc877de88bd2 Ko, Kyungmin, Heejin Lee, and Seungkwon Jang. 2009. “The Internet Dilemma and Control Policy: Political and Economic Implications of the Internet in North Korea.” The Korean Journal of Defense Analysis 21(3): 279–296. Kracht, Christian. 2007. “Introduction.” In The Ministry of Truth: Kim Jongil’s North Korea, 7–15. Los Angeles: Feral House. Lee, Jung Woo. 2009. “Red Feminism and Propaganda in Communist Media: Portrayals of Female Boxers in the North Korean Media.” International Review for the Sociology of Sport 44(2/3): 193–211. Leeb, Julia, and Niko Karasek Jr. 2014. North Korea: Anonymous Country. Kempen: teNeues. Loeser, Cassandra, Vicki Crowley, and Barbara Pini. 2017. “Introductory Essay.” In Disability and Masculinities: Corporeality, Pedagogy and the Critique of Otherness, edited by Cassandra Loeser, Vicki Crowley, and Barbara Pini, xxv–lxxiv. London: Palgrave. Moser, Ingunn. 2006. “Sociotechnical Practices and Difference: On the Interferences between Disability, Gender, and Class.” Science, Technology, and Human Value 31(5): 537–564. Munz, Eva, and Lukas Nikol. 2007. The Ministry of Truth: Kim Jong-Il’s North Korea. Los Angeles: Feral House. Park, Joowon. 2016. “The Gendered Contour of North Korean Migration: Sexualized Bodies and the Violence of Phenotypical Normalization in South Korea.” Asian Ethnicity 17(2): 214–227. Park, Yeonmi. 2017. “How the Black Market Helped Me, and Others, Escape North Korea.” Independent Institute, August 15. Accessed 26 April 2019. www.independent.org/newsroom/article.asp?id=9147 Parlati, Marilena. 2015. “Controversial Embodiment: Sport, Masculinity, Disability.” Other Modernities 14: 90–100. Persio, Sofai Lotto. 2018. “North Korean Defectors Killed Someone before He Escaped, Report Says.” Newsweek, January 23. Accessed 26 April 2019. www. newsweek.com/north-korea-defector-killed-person-escape-south-korea-787578 Petrisor, Adelin. 2016. A Weekend in Pyongyang, North Korea. Seoul: Hollyu. Phillip, Abby. 2017. “Trump Trades Insults with ‘Madman’ North Korean Leader Kim Jong Un.” The Washington Post, September 22. Accessed 26 April 2019. Retrieved from: www.washingtonpost.com/news/post-politics/ wp/2017/09/22/trump-warns-that-madman-north-korean-leader-kim-jongun-will-be-tested/?utm_term=.4b3e8f5fc15c. Piao, Yuming. 2017. “The Construction of Korean Female Images in the Korean War Novels from an Orientalist Perspective.” Comparative Literature 54(1): 195–210. Reuters. 2018. “They Escaped from North Korea: Personal Stories and Mementos of Defectors.” ABCNews, April 12. Accessed 26 April 2019. https:// abcnews.go.com/International/escaped-north-korea-personal-stories-mementosdefectors/story?id=54423385

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Ryang, Sonia. 2000. “Gender in Oblivion: Women in the Democratic People’s Republic of Korea (North Korea).” Journal of Asian and African Studies 35(3): 323–349. Sahn, Sarah F. 2017. “Between Friends: Disability, Masculinity, and Rehabilitation in The Best Year of Our Lives.” Journal of Literary and Cultural Disability Studies 11(1): 17–34. Samuels, Ellen. 2014. Fantasies of Identification: Disability, Gender, Race. New York: New York University Press. Serlin, David. 2017. “Introduction.” In Phallacies: Historical Intersections of Disability and Masculinity, edited by Kathleen M. Brian and James W. Trent, 1–20. New York: Oxford University Press. Shim, David. 2014. Visual Politics and North Korea: Seeing is Believing. New York: Routledge. Shim, David and Dirk Nabers. 2013. “Imaging North Korea: Exploring its Visual Representations in International Politics.” International Studies Perspectives 14: 289–306. Springer, Chris. 2010. North Korea Caught in Time: Images of War and Reconstruction. Berkshire: Garrett. Szalontai, Balázs. 2010. “Introductory Essay.” In North Korea Caught in Time: Images of War and Reconstruction, edited by Chris Springer, ix–xxvii. Berkshire: Garrett. Wee, Heesun. 2018. “How Millennials are Shaking North Korea’s Regime.” CNBC, November 12. Accessed 26 April 2019. www.cnbc.com/2014/11/12/ how-millennials-are-shaking-north-koreas-regime.html Zhang, Charlie Yi. 2016. “Queering the National Body of Contemporary China.” Frontiers 37(2): 1–26.

7

Disabled Heroines Representations of Female Disability in Japanese Television Dramas Anne-Lise Mithout

Television dramas have been an important part of Japanese popular culture since the 1960s. During the High-Growth Period (1955–1973), they were enjoyed primarily by a female audience, as the family model ‘male breadwinner / housewife’ was becoming the norm and men had no time to watch television (Sata and Hirahara 1991). Even though society has significantly evolved since then, today television dramas appeal more to women than men (NHK yoron chôsa bu 2018). This fact is clearly understood by producers who consciously design programs primarily intended for a female audience. Therefore, many dramas are centred on female characters and deal with issues that are supposed to appeal to women, such as romance, motherhood or the difficulties of worklife balance. They pertain to a sub-genre called ‘home dramas’ (hômu dorama), that is, dramas revolving around family issues. Since the 1990s, television dramas have been less centred on the idealized figure of the devoted housewife/mother (Gössmann 2000) and feature heroines facing diverse kinds of situations. For example, the heroines of NHK (Japan’s national broadcasting organization) morning dramas are able, through their own efforts, to transform a hostile environment. […] [The] burden which the heroine carries is that she has a dream, and the dream involves contributing to society not simply as a wife or mother, but in an ‘untraditional way’. The pursuit of the dream takes various forms, but essentially it involves a consideration of what it means for a female to enter a male world; and this involves reflecting on the meaning of marriage and family for a woman who has such a dream. The interest of the drama lies in whether and how she will manage to achieve her dream and, at the same time, [start] her own family: a family on her own terms, since it must accommodate her dream (Harvey 1998, 136). In spite of the high standardization of the genre regarding formal aspects, Japanese television dramas deal with a large variety of social issues, such as single-motherhood, teenage pregnancy or transgender

Disabled Heroines 115 identities, in addition to more traditional themes like family, work and love. Disability has long been one of these issues. However, until the 2000s, the representation of disability in Japanese popular culture (be it television or cinema) was either a tragic one, especially involving impossible love stories, or one based on the supercrip stereotype (the most famous being the blind swordsman Zatôichi1). In a paper on the gendered representations of disability in Japanese television dramas, Arran Stibbe (2004) noted that there were significantly more dramas portraying disabled women, highlighting a tendency to associate disability, powerlessness and femininity. Moreover, he found that disabled characters were strongly differentiated based on their gender. Disabled men were pictured as resolute and hard-working (gambaru) while disabled women appeared as passive and resigned (gaman suru): on both sides, disability was a factor reinforcing gender stereotypes. In the case of female characters, disability, added to the traditional depiction of women as self-sacrificing and enduring, was used to create an archetype: the persevering disabled women biting the bullet while facing various hurdles. Yet, during the past 15 years, the issue of disability has been brought to the fore in Japan. Along with the signature of the Convention on the Rights of Persons with Disabilities in 2007, disability policies have been substantially reformed in fields such as education, welfare or employment. ‘Inclusion’ (inkurûjon) and ‘social participation’ (shakai sanka) have become keywords of political action and have progressively become more familiar to public opinion. Social participation has been all the more emphasized that, in Japan, there was a historical tradition of home confinement for people with disabilities. Indeed, until 1945, special institutions taking care of disabled children were very rare and families had no alternative but to take care of them in the family home. Moreover, the social stigma associated to disability fuelled families’ reluctance to let disabled family members go outdoor, out of fear that they would be seen. After 1945, movements of families emerged to request support from the State and the creation of special institutions. Therefore, life in special institutions was socially perceived as a progress, as compared to home confinement, and independent living, even though promoted by disabled people’s associations, remained very rare in practice. Therefore, when the State started to promote ‘social participation’ in the 1980s (but more visibly in the 2000s), it especially meant more independent living (as opposed to life in special institutions), more access to employment and more access to public space in general. The Japanese Disability Rights Movement, formed by disabled people themselves and sometimes strongly conflicting with parents’ associations, has been defending disabled people’s rights to social participation since the 1970s, especially by promoting disabled people’s visibility and self-assertion.

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In the media, Paralympic sports has been raising more and more attention (especially in preparation for the 2020 Tokyo Olympic and Paralympic Games) and the TV show ‘Baribara’ (standing for ‘Barrier-free variety (show)’), broadcast on NHK since 2012, is aimed at promoting a more positive vision of disability and the move towards a barrier-free society. This chapter aims to investigate the representations of disabled women in recent Japanese television dramas and to assess the extent to which the ideas of inclusion and social participation have pervaded television fiction. What is the image of disabled women constructed by Japanese television dramas? Are they still anchored to the ‘biting-the-bullet’ archetype, or do they reflect a larger diversity of situations and characters participating to society in different ways? Television drama being an important part of Japanese contemporary popular culture, widely consumed in Japan and abroad, academic literature on Japanese (or Asian) television dramas is abundant. It has explored in depth gendered representations (Matsubara 1979), especially representations of women’s happiness and difficulties regarding love, family and work-life balance (Harvey 1998; Gössmann 2000; Freedman and Iwata-Weickgenannt 2011; Kim 2013; Poerwandari, De Thouars, and Hirano 2014). It has also tackled less mainstream issues such as the representation of non-normative sexualities (Min 2011) or postcolonial perspectives on gender and ethnicity in Asian dramas (Yang 2013). Yet the representation of people with disabilities has been overlooked by this literature, except for Stibbe’s (2004) paper, mentioned earlier. Conversely, research on the representations of people with disabilities in Japan has dealt with literature (Hanada 2002), movies (Ban 2015), media reporting on Paralympic games (Yamada and Ôno 2018) or the TV show ‘Baribara’ (Ban 2018), but not with television dramas. This chapter thus aims to fill this gap.

Research Data For this research, I have studied four television dramas, depicting a total of six female disabled characters: Ichi rittoru no namida (2005), Daisuki! (2008), Kokoro no ito (2010) and Dokuhime to watashi (2011). I have chosen these four shows because they are centred on a female disabled character and each of them represents a different category of disability (neurodegenerative illness, intellectual disability, deafness and motor impairment). I selected Ichi rittoru no namida because it is the most popular Japanese drama centred on a disabled female character: broadcast on an evening slot, it earned an average audience rate of 15.4% (while the average audience rate for television dramas in 2005 was 14.2%). 2 The book it was based on (Kitô 1986) was already a commercial success and has also been adapted into a manga (Kitô and KITA 2015). Its success

Disabled Heroines 117 has not been limited to Japan and it has been broadcast in many Asian countries and subtitled in other languages such as English, French and Arabic. Drawing on the success of the drama, the book has been translated in several languages too. I chose Daisuki! because it was written in collaboration with activist associations and is meant to provide a realistic vision of the daily life of people with intellectual disabilities. I included Kokoro no ito and Dokuhime to watashi even though their audience rates were lower, because their stories present some original elements, including the fact that they feature more than one important female character with a disability. The four shows were broadcast on national television. •

•

•

•

Ichi rittoru no namida (One Liter of Tears) (2005) is a TV drama in 11 episodes, directed by Murakami Shôsuke and Kinoshita Takao. It is based on the diary of a young girl diagnosed with a neurodegenerative disease at age 15. It was first broadcast on Fuji Television on Tuesday evening, 9 pm. It obtained a 15% audience rate. Daisuki! (I Love It!) (2008) is a TV drama in ten episodes written with the collaboration of activist associations, directed by Takemura Kentarô, Hori Hideki and Tsukahara Ayuko. It narrates the daily life of a young single mother with an intellectual disability. It is based on a manga by Aimoto Mizuho (published from 2005 to 2012) and was first broadcast on TBS on Thursday evening, 10 pm. Its average audience rate was 11%. Kokoro no ito (Thread of Our Hearts) (2010), directed by Higashiyama Mitsuhiro, is a 90-minute long telefilm depicting the relationship between a deaf girl and a young pianist living with his deaf single mother. It was first broadcast on NHK on a Friday evening, 9 pm. It obtained an 8% audience rate. Dokuhime to watashi (The Poison Princess and I) (2011) is a soap opera in 39 episodes, directed by Shimazaki Toshiki, Kaneko Yoshiichi and Sasaki Masayuki. It narrates the adventures of a young wheelchair-using writer and her female editor and includes another wheelchair-using female character, the writer’s childhood friend. It was first broadcast on Fuji Television on weekdays at 1:30 pm. It obtained on average a 4% audience rate.

This set of data involves fictional characters with various types of impairment (hearing, physical, intellectual). Yet, despite the apparent  differences between them, all these characters are confronted with fairly similar social situations, as would suggest the social model of disability (Shakespeare 2013). This theoretical model, indeed, defines disability not as a medical issue, but as a social one: the cause of disability does not lie in the person herself, but in the environment, and especially in the barriers that prevent people living with certain

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kinds of conditions to participate in social life. Therefore, rather than focusing on the specific situations experienced by people living with different categories of impairment, the social model aims to give a general theoretical framework that can apply to all ‘disabled’ people. Even though this model has been criticized (Shakespeare 2013), notably for overlooking the diversity of physical experiences lived by people with disabilities, it has laid the ground for new perspectives on disability. Based on this model, the notion of social participation has become a keyword of disability policies. The purpose of this chapter is to analyse the representations of disabled people’s social participation conveyed by these four shows. The concept of social participation has been widely used in the social sciences and policy making. In a literature review on definitions given in a broad range of disciplinary fields related to ageing, Levasseur et al. (2010) conclude that, in current literature, ‘social participation can be defined as a person’s involvement in activities that provide interaction with others in society or the community.’ Using the term ‘societal involvement,’ rather than ‘social participation,’ Badley (2008) defines it as the performance of socially or culturally recognized social roles such as work, leisure, parenting or community life. Moreover, Martin Ginis et al. (2017) highlight the fact that social participation does not amount to the level of performance of pre-defined social role; it must be conceptualized in terms of subjective experiences, taking into account the meanings and satisfaction that a person derives from participating. Based on these definitions, I have drawn a typology in order to compare the six characters featured in the above-mentioned dramas, using six criteria. Five of them concern social roles played by the characters, namely the roles of resident (in a specific living environment), worker, family member, lover and friend. In order to investigate each character’s performance of these roles, I have analysed the interactions with other characters involved in these activities: accommodation (where the character lives and with whom), occupation (what the character does for a living or in daily life), family relationships (what kind of relationships does the character have with members of her family), romantic relationships (to what extent and with whom is the character involved in romance) and friendships (does the character have friends and who are they). The sixth criterion, which aims to provide an overview of the character’s subjective experience of these roles, concerns the personality traits that the character displays throughout the drama. The results of this typology are summarized in Table 7.1. In the following sections, I will present the results of this comparison, first by investigating the depictions of disabled heroine’s sociability visible in these dramas, then by focusing on one specific aspect of social participation: involvement in romantic and sexual relationships (sometimes leading to motherhood).

Family relationships

- Very protective parents (sacrificial mother) - Brother - Partner’s sister - Daughter

Student/parttime job at a hair salon

At a fugu - At first in a factory sheltered workshop - Then at a bakery None except Life in a threeher son generation Akihito household:

Occupation

Miki Strong personality, assertive, loud voice, prone to laughter and anger - Own apartment - Flat sharing with her editor - Hawaii - Flat sharing again - At first writer - Then politician

The Poison Pr incess and I

Parents’ house (including with her husband)

Erika Self-effacing, then obnoxious, then quieter

- At first takes care of sick children - Then writer - Then a politician’s wife Mother and - Abandoned at birth be- - Parents (mother overprotective at first, then younger cause of her disability breaking up with the brother (both - Her mother turns out family) to be Erika’s father’s hearing) - Brother mistress, a writer depicted as careerfocused, selfish and obnoxious - In the last part of the show, 5-year-old son

Parents’ house

Own house

Parents’ house

Accommodation

Izumi Joyful and optimistic

Thread of Our Hear ts

Reiko Lives only for her son’s career

I Love It!

Character’s name Yuzu Joyful and Personality hard-working

Show

Table 7.1 Typolog y of characters

(Continued)

- Parents (both loving and protective) - Younger sister - Younger brother

Student

Parents’ house

Aya Optimistic, smiling, hardworking, friendly

One Liter of Tears

I Love It!

Daughter’s father (deceased)

- Friends at the sheltered workshop - Then another mother at daughter’s school

Romantic relationships

Friendships

Character’s name Yuzu

Show Izumi

None (some friendly interactions with her boss) - Music band - Friends from special school - Colleagues at the hair salon

Reiko’s son None since Akihito her divorce (which was directly related to her deafness)

Reiko

Thread of Our Hearts Erika

- At first in love with the man responsible for the accident that caused her disability - Then engaged to the editor’s ex-fiancé (who happened to be the brother of the man she loved at first) - Erika Miki (then breakup, - Her editor then lukewarm - Then women at the assoreconciliation) ciation where Erika’s mother works

- At first in love with her editor’s fiancé - Then Erika’s brother (father of her son)

Miki

The Poison Princess and I

- Classmates from ordinary high school - T hen classmates at special school

A mbiguous relationship with a male classmate from ordinar y high school

Aya

One Liter of Tears

Disabled Heroines 121

Sociable or Isolated: Typified Portraits The most striking feature that appears when comparing these four shows is the fact that two of them portray more than one female disabled character. This is hardly a coincidence since, in both of them, the whole narration is based on the contrast drawn between two disabled women. In The Poison Princess and I, the two wheelchair-using characters, who are best friends at first, are strongly typified. Miki is a very assertive (verging on rudeness) young woman presented in a positive light despite her apparent lack of manners, while Erika is portrayed as self-effacing at first, yet progressively becomes jealous and vengeful. Following the same pattern, Thread of Our Hearts is based on the opposition between Reiko, a deaf single mother whose only desire is to push her son Akihito to become a professional pianist, and Izumi, a deaf young girl who falls in love with Akihito. Both narrations rely on a strong polarization of characters, on a bright-versus-dark opposition, positive representations being associated with sociability, while negative representations are associated with isolation. Miki and Izumi live a life full of interactions with other people. They are extroverts and self-assertive. Comparing how these characters are introduced in both dramas offers a glimpse of their personalities. Miki makes her first appearance in the first episode of The Poison Princess and I. The beginning of the episode has been focusing on her yet-to-be editor, Komugi. Komugi has just been dumped by her boyfriend in a restaurant and is taking refuge in a wheelchair-accessible bathroom to cry. Miki is waiting to use the bathroom and, after some time, starts yelling and asks whether the bathroom is occupied by a disabled person. When Komugi finally goes out of the toilets, Miki says angrily: ‘So you really are a disabled person. Your disabilities are your face and your personality […] I have seen you earlier when that stupid man dumped you. The reason he dumped you must have been your face.’ The scene reveals that Miki can easily get angry at unknown people and is ready to speak up when she feels disrespected. This form of verbal assault against an unknown woman in tears shows that Miki has no mercy for people who infringe on disabled people’s rights (here, the right to use a wheelchair-accessible bathroom). In Thread of Our Hearts, Izumi is introduced in a somewhat similar manner. The hero Akihito, who studies to become a professional pianist, sees a music band playing on the street. He thinks that the keyboard player (Izumi) sounds terrible and mumbles ‘you suck.’ The young girl seems to perceive his comment and gives him a very angry look. A few days later, Akihito is waiting in line at the city hall when Izumi suddenly appears and puts her cellphone in front of his eyes. She has written on it ‘It was rude of you to say “you suck”’ and gives him an angry look before going away. Then he runs after her, understands that she is deaf

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(as someone in the administrative staff is talking to her in sign language) and tries to engage in a conversation with her in sign language. At some point he asks: ‘How come you can play music even though you can’t hear,’ she answers: ‘how come you think I can’t?’. Both scenes are strikingly similar: both Miki and Izumi engage in a conversation with an unknown person and want to make them apologize for having disrespected them because of their disability. They both assert themselves as people with disabilities who defend their rights, be it the right to use barrier-free toilets or to play music as they please. Yet, after being introduced as self-assertive, even aggressive, they are depicted as progressively softening: the following episodes of The Poison Princess and I revolve around Miki progressively becoming friends with Komugi, while Thread of Our Hearts shows Izumi and Akihito falling in love. In both cases, Miki and Izumi are outgoing and sociable characters: they do not hesitate to make the first move towards unknown people (including through verbal assault or bursts of anger when they feel disrespected). They have both disabled and non-disabled friends. Quite on the contrary, Erika and Reiko are depicted as shy, isolated and ashamed of their disabilities. Erika lives with her family, overprotected by her mother. As an occupation, she helps her mother who works in a nursing home for sick children, but she hardly goes out or does any activity of her own. She has no friend of her age, but Miki. Reiko is a mature woman living in her own house; yet she has no friends either: deafness means to her a complete inability to communicate with others, except for her son who can speak sign language and acts as an interpreter between her and the outside world. It is quite remarkable that, although she is said to have studied in a special school for the deaf, she has no deaf friend with whom she could speak sign language. In her case, deafness is depicted as a symbol of absolute loneliness. She is portrayed not only as the only deaf person in her surroundings, but also as avoiding contacts with other deaf people, thus refusing to embrace her own identity as a deaf person. Therefore, in both dramas, pairs of disabled characters seem to be constructed on a binary opposition: ‘positive character, extrovert and sociable’ versus ‘negative character, introvert and isolated.’ In this sense, the idea of social participation is present in the narratives: in each drama, one character can be said to be participating to society (as an individual involved in various types of relationships with different people), while the other is depicted as isolated (and suffering from loneliness). Social participation, in the form of interactions and relationships, is thus presented as the best form of life experience for disabled people, leading to happiness while isolation leads to suffering. Showing representations of active, extrovert and socially involved

Disabled Heroines 123 people with disabilities, as opposed to characters experiencing disability as unhappiness and isolation, these two dramas seem to embody one of the mottos of the Japanese Disability Rights Movement, that is, to refute the widespread perception of disability as sorrow and loneliness (Yokozuka 2007). In the two dramas that feature only one disabled character (I Love It! and One Liter of Tears), the same positive pattern can be found. Heroines are sociable, liked by many and experience at the same time relationships with disabled and non-disabled friends. With disabled peers, they can share their experiences and difficulties. With nondisabled friends, they are able to participate in a wider range of social activities. The message that is conveyed through these six characters is therefore that isolation is the worse curse, while any difficulty can be overcome if tackled collectively. This depiction is consistent with the fact that, since the 1970s, the Japanese Disability Rights Movement has been criticizing the social norm viewing disability as an individual tragedy (Yokozuka 2007; Mithout 2020a). Activists have been arguing for an increased consideration of the social dimensions of disability (and so even before the introduction of the Western social model of disability) (Sugino 2007, 219–23). More precisely, they have been campaigning in two directions: first, in compliance with the Western social model, for an inclusive society, especially based on universal design, that would eliminate barriers to disabled people’s participation and second, for the recognition of disability as an individual particularity (kosei), an identity that can be proudly asserted,3 and for the need to promote a society based on mutual understanding and support (rather than medical rehabilitation of ‘deviant’ individuals). Therefore, the representations of disability shown in the four dramas appear to take this claim into account, through idealized depictions of characters who are not ashamed of their disability, lead fulfilling social lives and have happy interactions with both disabled and non-disabled people. These depictions are reinforced in two dramas by the contrast drawn between the heroine and another disabled character depicted as isolated and sad. Therefore, social participation, in the sense of involvement in various social roles and relations with others, is pervasive in the four dramas. The four heroines are presented as ideal disabled persons participating to society in various ways, especially through work (all of them have jobs) and friendships. The four shows depict at the same time the need for non-disabled people’s understanding and support and the importance of community links with disabled peers sharing the same difficulties. Even though positive characters are fitting relatively well in mainstream society (especially in ordinary workplaces), some narratives emphasize the importance of places such as special schools or sheltered workshops,

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to create a sense of belonging and identification to a community of peers. In this sense, these dramas depart from the promotion of an all-inclusive society where segregated spaces would disappear.

A New Social Role: Disabled Women as Lovers As mentioned in the introduction, romance is a recurrent theme in Japanese TV dramas; therefore, it should come as no surprise that disabled heroines, too, are portrayed as being (or having been) involved in romantic relationships. However, the depiction of disabled women as lovers is in fact a new theme on Japanese TV. Indeed, in Japan (as in many other countries), disability has long been associated with asexuality, be it for men (Yokosuka 1999) or for women (Asaka 1993; Mithout 2018). Women face a double de-sexualization, as women and as disabled persons. Indeed, women (disabled or not) are perceived as a mirror for male desire and not as actively desiring beings. Contemporary Japanese erotic culture is filled with representations of women as young, innocent, vulnerable, irresponsible (Giard 2006, 12). Women in general tend to be considered as sexual objects, not as sexual subjects. Yet, in the case of disabled women, even passive sexualization hardly occurs. First, because women with disabilities do not fit into the model of the ideal wife, that is, a woman that would be able to carry out house chores, and are therefore not perceived as potential partners for a heteronormative relationship (Asaka 1993, 180). Second, because women who do not meet mainstream beauty criteria do not fit into the model of the ideal lover. Even though a fetishism attached to disability can exist, and even though disabled girls, embodying the ideal of the vulnerable woman, can be sexualized as super-passive objects, the reality experienced by most disabled women is one where sexuality is tabooed (Asaka 1993; Mithout 2018). Therefore, until recently, TV shows featuring female disabled characters tended to portray them either as non-sexual beings or as experiencing an impossible love for a handsome non-disabled young man. Love stories involving a female character with a disability had every chance of being tragic, as disability appeared as an unsurmountable obstacle to romantic and sexual fulfilment. In striking contrast to this image, the four TV shows studied here all present characters who have romantic and sexual relationships, either with disabled or non-disabled men. The only story that clearly pertains to the tragic style is Reiko’s, in Thread of Our Hearts: 20 years before the beginning of the plot, she was briefly married to a man (who became her son’s father), but he eventually left her to marry a hearing woman (with his family’s strong approbation). After the tragic end of this affair, Reiko never had a relationship again. In her own words, she became ‘a coward’ regarding love. Yet, this story is said to have happened in a

Disabled Heroines 125 distant past, and Izumi, the deaf young girl, strongly opposes this way of thinking. In a confrontation scene, Reiko and Izumi fight over Izumi’s ability to make Reiko’s son happy, Reiko revealing that she has fully internalized the prejudice stating that a deaf woman is not able to make a hearing young man happy. The scene takes place at a restaurant and both characters talk in sign language. (Reiko) – Now, the most important thing for him is piano. He’s trying to make it in a world that neither you nor I can touch. (Izumi) – A world that we cannot touch? (Reiko) – We cannot hear the sound of his piano. (Izumi) – I heard it! Only you can’t hear it. Only you coward can’t hear it.4 Indeed, scenes involving Izumi and Reiko’s son Akihito show them having fun, sharing thoughts and emotions, and even enjoying the rhythm of music together. Their relationship, based on mutual understanding, is nothing like a tragedy. The confrontation between Izumi and Reiko aims to show that Reiko’s story should not happen anymore, in a world where disabled people are free to make their own choices, even when not fitting with mainstream criteria. While Reiko has internalized prejudices against a disabled women’s ability to live fulfilling romantic relationships, Izumi embodies a message of hope by championing the idea that disabled and non-disabled people can communicate, connect with each other and share love and emotions. Signs of a tragic pattern can be seen in One Liter of Tears too. As Aya’s disease progresses, her relationship with a male classmate becomes progressively hopeless. However, it is noteworthy that, in the book the show is based on, there was no mention of any romantic feeling whatsoever. It was in fact highly paradoxical that the book’s postface, written by one of Aya’s doctors, revealed that she had fallen in love with a young intern working at her hospital, while the diary, which was supposed to reveal her heart and secrets, completely omits this dimension. This leads to the hypothesis that her manuscript text has been edited, possibly to comply with the normative model of the asexual disabled young girl (M ithout 2020b). Yet, in the drama adaptation, a male character has been created so that the fictional Aya lives a form of love story, even though they are never shown kissing or explicitly confessing their feelings. Aya’s disease is an obstacle to their love, but only to the extent that the perspective of her early death makes it impossible for them to imagine a future together. Before they learn about its lethal character, they flirt and go out on dates, so that her being in a wheelchair is not presented per se as a problem for their relationship. Quite on the opposite, he is devoted to supporting her and demonstrates a persistent commitment to her. But on episode 11, Aya’s father comes to him and says ‘I am very grateful for what you have done for all this time. So, from now on, live your own life, the best you can.’ He is therefore suggesting

126 Anne-Lise Mithout that there is no future in the boy and Aya’s relationship, and that the boy should think about himself first, instead of wasting his energy in caring for a disabled girl with a lethal disease. Yet the boy chooses to continue seeing Aya. This scene shows that, for him, neither Aya’s disease nor her family’s opposition to their relationship is sufficient reason for breaking up with her. Therefore, Aya is shown as inspiring him with absolute love and devotion, thus as a suitable partner in his eyes, even though her own parents disagree with this view. In this sense, the same pattern as in Thread of Our Hearts can be found: the younger generation feels free to love who they are attracted to, regardless of disability, whereas the parent generation is opposed to such unions and argues that a disabled girl cannot bring happiness to a disabled young man. Even though One Liter of Tears ends tragically (due to Aya’s death), these two dramas aim to send an optimistic message concerning the possibility for disabled people to get involved in romantic relationships. While Thread of Our Hearts and One Liter of Tears present teenagers’ perspectives on romance and elide sexual issues, The Poison Princess and I and I Love It! deal with adult heroines and explicitly tackle sexuality. In The Poison Princess and I, Miki receives overtures from Erika’s brother, whom she eventually falls for. Their first sexual intercourse is an important element of the plot: the scene takes place at the end of episode 25. Erika’s brother Jun has confessed his love for her several times, but she has always laughed at his declarations and acted as if they were jokes. The scene takes place in Miki’s room, where they talk about Erika. They alternatively discuss seriously and make jokes. At some point, Jun says: (Jun) – I will protect Erika. But I will look after you too. I could make a living as a guitarist and provide for you, right? (laughter) (Miki, laughing) – You idiot! Don’t say stupid things like this! […] (Jun, in a serious voice) – I’m serious. (Miki, embarrassed) – Is that so? Thank you. […] (Laughter) You’re an idiot, really. (she slaps his head softly, they laugh) (Jun) – Well, I should go now. (Miki) – Are you in a hurry? […] (Jun) – Not really, but…since we are alone here, it is embarrassing… (Miki) – It is embarrassing?…It is ok if we do it… […] If you are sincere, I’m ok to do it. I love you. Even before…But if I had more self-confidence…With this body…But can you take me in your arms? (Then they are shown in bed, kissing) This scene reveals that Miki has, in fact, been in love with Jun for a long time, but has refused to believe his declarations, out of fear that he was not sincere. She is suddenly shown as vulnerable, in contrast with her usual self-assertive personality. The reason why she was protecting herself is that she was not sure that the man she loved could really love her back in spite of her disabled body. Yet, Jun’s love is sincere, and he

Disabled Heroines 127 loves her for who she is. This scene, though sounding rather cliché, is original in the sense that it explicitly shows a disabled heroine as having sexual desire for a non-disabled man and being desired back. Disability is thus no obstacle to love nor to sexuality. Yet, it appears clearly that, in this case, sex is strongly associated with love: Miki feels ready to have sex with Jun only to the extent that he has feelings for her. In that sense, she fits in the mainstream model of female sexuality, that is, strongly connecting sex and love. The same pattern can be observed in I  Love It!, where Yuzu explains that she and her partner had sex because they wanted to ‘create a family.’ In both cases, disabled women’s sexuality is shown as fitting in the heteronormative model that associates female sexual desire with the desire to be in a stable relationship and to start a family. Moreover, although these examples shed light on the increasing appearance of love stories involving disabled women in Japanese TV dramas, it is striking that, in all cases, disabled female characters are played by non-disabled actresses who fit into the Japanese ideal of ‘cuteness.’ Since the 1980s, ‘cute’ (kawaii) has become a major aspect of Japanese popular culture in a broad range of fields, be it food, clothes, handwriting or idols, a boom that can be related to a desire to escape the harshness of social realities (Madge 1998; Kinsella 2013). As shown by Riessland (1998, 149) in the case of advertising, ‘the power of cuteness is not only able to make the potentially dangerous appear less so, it also permits its user to overstep the limitations of social convention and to speak or write about that which is treated as taboo.’ In the case of the TV dramas studied here, embodying disability through cute young girls appears as a way to evacuate the uncanny dimension of disability (Stiker 2007) and to deal with a taboo, disabled women’s sexuality, within the boundaries of a highly codified cinematographic genre. Indeed, TV drama, as a genre, is built around the popularity of young female actresses such as Karina, the model and actress who plays Yuzu in I Love It!, or Sawajiri Erika, the actress and singer who plays Aya in One Liter of Tears. These actresses have played an essential role in the popularity of these dramas. Therefore, it appears that these dramas use the cuteness (and popularity) of actresses to introduce the issue of disability on TV, rather than try to provide a realistic representation of ordinary disabled women’s bodies.

Disabled Women as (Single) Mothers As a consequence of these love affairs, more than half of the characters studied here become mothers. This is all the more surprising that maternity for disabled women remains a form of taboo. Under the eugenic protection law (yûsei hogo hô) (1948), forced sterilizations of people with certain types of disabilities have been carried out for several decades. The law was gender-neutral, yet most victims turned out to be

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women, especially women with mental disabilities (Toshimitsu 2016). Even though most cases occurred in the 1960s and 1970s, the law was abolished only in 1996, after the situation had been exposed by activists in international organizations (Iida 2004). As research is digging further into this issue, it is revealed that, at the time when they had sterilizations surgery, a number of victims were not even aware of their reproductive capacity (Toshimitsu 2016). Indeed, education in special school often avoids discussions of reproductive and sexual issues, under the principle of ‘not waking up the sleeping child’ (Hattori 1989). Sex education in Japan in general is limited and information conveyed to children with disabilities remains scarce even today, which contributes to a low level of knowledge about sexual and reproductive issues among disabled people. Considering the taboo on disabled people’s reproduction, it is striking that three out of four TV shows studied here feature disabled heroines who have children. Reiko’s case, in Thread of Our Hearts, seems somehow specific to the extent that her pregnancy dates back to 20 years before the beginning of the plot. Therefore, the story revolves around her dealing with a grown-up son, not with child-rearing itself. Yet, during her confrontation with Izumi (quoted earlier) she explains that, after her partner broke up with her, ‘my husband and my stepmother tried many times to steal him from me. They said I could not raise a child because I was deaf. Therefore, I worked very hard. Because if I had shown any weakness, they would have taken him away from me. Her story is thus representative of the social stigma associated with disabled women’s motherhood and the social perception of their (in)ability to be good mothers. At the beginning of I Love It!, Yuzu is in a relationship with a young man from the sheltered workshop she works at. I Love It! is thus the only drama in our sample that features a relationship involving a disabled man. However, this relationship ends in the first episode, as he passes away after getting hit by a truck. At the end of episode 1, as Yuzu is brought to the hospital after fainting, her family discovers that she is pregnant. Their reactions make explicit that they had not believed the lovers capable of having sex (‘I never imagined they went this far’ says even the director of the sheltered workshop). This appears as a message directed to the viewer (who is supposed to share the same reaction), asserting the existence of intellectually disabled people’s sexuality, in opposition to widespread beliefs. Yuzu’s mother is very shocked and wants her daughter to have an abortion (fearing that Yuzu will not be able to take care of a child). The director of the sheltered workshop explains:

Disabled Heroines 129 ‘A lot of people like them marry and have children. […] Will you listen to Yuzu’s feelings?’. As Yuzu says ‘I will give birth,’ her mother progressively changes her mind, thus acknowledging her daughter’s right to make her own decision regarding motherhood. Then the whole story revolves about the difficulties Yuzu faces in raising her daughter as a single mother with an intellectual disability. Miki’s case, in The Poison Princess and I, is different, to the extent that her son’s father (Jun) is still alive and willing to see her, yet for an unclear reason she does not want him around for some time. Her reasons for shutting him out are unclear: it seems that she is not confident in their relationship and prefers to rely only on herself. But after another few twists, she finally decides to take him back as a partner and a father. In these dramas, motherhood with a disability is thus strongly associated with single motherhood, be it chosen or not. The three shows deal with the difficulties of raising a child as a disabled single mother. In Reiko’s case, single motherhood is another dimension that reinforces Reiko’s isolation. Yet, Yuzu’s and Miki’s cases present a more positive vision of single motherhood, to the extent that, no matter what difficulties they go through, they are always supported by their close ones. In fact, ‘close ones’ always means ‘other women,’ as male characters are little developed and always presented as absent, busy with their careers and inefficient regarding family matters. Yet, let us mention that the absence of male characters is not specific to drama dealing with disability. As mentioned in the introduction, TV drama is a genre that has boomed during the High-Growth Period, essentially thanks to an audience of housewives. The sub-genre of home drama, that is, dramas dealing with family and daily life issues (as opposed to other sub-genres such as detective stories or historical dramas), aims to reflect the audience’s concerns and realities, including having a husband who dedicates most of his time to his company. In that sense, dramas dealing with disability are no different from other home dramas: they take place in a prevailingly female world and emphasize women’s solidarity in solving daily life problems. But they show disability as a situation where the need for mutual support between women is even more crucial than usual. In I Love It!, Yuzu finds support especially from her mother, who is a paradigmatic sacrificial mother as can often be seen in Japanese home drama, which have often be said to be ‘mother-centered’ (Sata and Hirahara 1991, 117–22). The heroic grandmother always manages to solve whatever problem Yuzu falls into. Yuzu’s motherhood could have been depicted as a symbol of adulthood and emancipation. Motherhood in Japan being socially perceived as a key step in the transition to adulthood, the story could have shifted the focus from her being a daughter (a child) to her being a mother (an adult). Yet, on the contrary, it actually turns out that her pregnancy reinforces her dependency towards her own

130 Anne-Lise Mithout family, since the show constantly depicts her as relying on her mother’s support. In fact, the worse difficulty she faces throughout the story is not about child-rearing itself, but about dealing with her mother getting sick. The plot of the final two episodes revolves around this idea: Yuzu’s mother is at the hospital and she discusses with other characters whether they should let Yuzu know about her disease (which might be cancer). At first, they try to simply hide from Yuzu the fact that her mother is sick, so that she can go on with her daily life without worrying. But finally, Yuzu finds out about her mother’s sickness and becomes very upset and sad. Her mother makes her swear that, whatever happens, she will continue to go to work every day, because ‘for you (Yuzu), the most important thing is that you have become able to work.’ Several other female characters promise that they will take care of Yuzu. But in the end, the mother gets better and comes back home, to everyone’s relief. Yet, these scenes show that, in any case, support from her mother or a substitute mother is absolutely necessary for Yuzu. In The Poison Princess and I, Miki’s case is different, to the extent that she has no family (she is said to have been abandoned at birth because of her disability). She receives help mostly from another female character who takes the role of a substitute mother, her editor. Yet, in both dramas, the representation is the same: a disabled single mother cannot raise a child without support from other (non-disabled) women. Therefore, these three dramas tackle a subject little dealt with on Japanese TV, motherhood for women with disability, breaking the taboo surrounding disabled people’s sexuality and reproduction. However, in spite of the originality of the subject, they follow very classical patterns in home drama. They present family situations where male characters are underdeveloped, and in two cases the family is run by a typical ‘sacrificial mother’ character (while in the third one the heroine lives in fear of a distant mother-in-law). Disabled mothers are thus shown not as autonomous and emancipated characters, but rather as daughters relying on their own mothers (or mother substitutes)5 who are the true, though discrete, heroines (following the classical pattern of mother-centred dramas where the mother, whose efforts hardly receive any recognition, is trying her best to hold the family together). As discussed earlier, these dramas argue for the importance of mutual support: one should add that they are an ode to female solidarity, anchored in the perception of motherhood as an entirely female issue. Moreover, one can say that they aim to touch viewers by making them sympathize not only with the disabled character herself, but, maybe even more, with her mother. This is in fact a very classical perspective when discussing disability issues in Japan, since the voice of people with disabilities in the public sphere has long been represented by parents’ associations.6

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Conclusion The representations of female disability in these dramas are ambivalent. On the one hand, one can observe that female disabled characters are represented as participating to society in various ways. They have an occupation, a fulfilling social life and love affairs. Some of them even become mothers, which remains, in Japan, a social symbol of successful femininity. On the other hand, in spite of its apparent originality, the topic of disability is in fact treated in these shows in a very traditional way, meeting the classical codes of Japanese TV drama (absence of men, female solidarity against daily life difficulties, cute young girls, sacrificial housewives…). These dramas do show a positive image of disabled people’s social participation. Some of them even provide a realistic depiction of disabled women’s lives. In that sense, they can be said to inform the audience about disability and to convey positive messages concerning disabled people. However, as they fit perfectly into the strongly codified genre of TV drama, their main purpose appears to be something else than the normalization of disabled female characters. One can see in them a tendency to use disabled women as metaphors of the female condition in general, weighed by dilemmas and norms imposed by society. The depiction of disability is not that of an exceptional or unprecedented situation. Disability is rather presented as a factor accentuating other difficulties shared by many (disabled and non-disabled) women: work, work-life balance, relations with parents and in-laws, love, (single) motherhood… Belonging to a genre that is meant to echo women’s concerns, these dramas do not aim to promote a new vision of disability per se. They are rather using disability as a fictional tool symbolizing, as an extreme case, social constraints weighing on all women. Therefore, rather than representing disabled people’s social participation, these dramas represent social barriers faced by Japanese women.

Notes 1 Zatôichi is a fictional character in a 26 movie series produced by Daiei Film between 1962 and 1989, and a movie directed by Kitano Takeshi in 2003. The movies take place in the Edo period and Zatôichi is a blind itinerant masseur and a highly skilled swordsman. 2 All data on audience rates have been found on the database Audience Rating TV: https://artv.info/. 3 Worthy of notice is the fact that not only the deaf movement but also wheelchair-users have been using this argument. The association Aoi shiba no Kai, pioneer of the Japanese Disability Rights Movement, consisted of people with cerebral palsy and played a key role in advocating for the need for disabled people’s self-assertion, in a context of eugenic policies. 4 All the dialogues quoted in this paper have been translated by the author.

132 Anne-Lise Mithout 5 Or, on the contrary, as daughter-in-law fearing for their mother-in-law’s judgement, as in Reiko’s case. 6 This is the reason why a clash occurred in the 1970s when associations of disabled people themselves started to make their own voices heard and sometimes strongly opposed parents’ claims (Hori 2014).

References Asaka, Yûho. 1993. Iyashi no sekushî torippu [A therapeutical sexy trip]. Tokyo: Tarôjirôsha. Badley, Elizabeth M. 2008. “Enhancing the conceptual clarity of the activity and participation components of the International Classification of Functioning, Disability, and Health”. Social Science & Medicine 66 (11): 2335–45. Ban, Yukie. 2015. “Eiga ni okeru shôgai hyôzô: komyunikêshon no mondai to shite byôsha sareru shôgai [The representations of disability in movies: disability depicted as a communication issue]”. Nihon komyunikêhson kenkyû 43 (2): 109–24. Ban, Yukie. 2018. “Enjiru shintai / enjirareru shintai no kyokôsei: ‘Baribara’ ni okeru shôgaisha performance wo rei ni [The fictionality of playing/played bodies: the example of the disabled people’s performances in ‘Baribara’]”. Nihon komyunikêshon kenkyû (2): 151–67. Data base Audience Rating TV: https://artv.info/ Freedman, Alisa, and Kristina Iwata-Weickgenannt. 2011. “‘Count what you have now. Don’t count what you don’t have’: The Japanese Television Drama around 40 and the politics of women’s happiness”. Asian Studies Review 35 (3): 295–313. https://doi.org/10.1080/10357823.2011.602042. Giard, Agnès. 2006. L’imaginaire érotique au Japon. Paris: Albin Michel. Gössmann, Hilaria. 2000. “New role models for men and women?: Gender in Japanese TV dramas”. In Japan Pop!: Inside the world of Japanese popular culture, edited by Timothy Craig, 207–21. New York: East Gate. Hanada, Shunchô. 2002. Nihon bungaku ni okeru shôgaisha zô [The representations of disability in Japanese literature]. Tokyo: Akashi shoten. Harvey, Paul. 1998. “Nonchan’s dream: NHK morning serialized television novels”. In The worlds of Japanese popular culture: Gender, shifting boundaries and global cultures, edited by Dolorès Martinez, 133–51. Cambridge: Cambridge University Press. Hattori, Sachiko. 1989. Shôgaiji to sei : shishunki no jitsuzô [Disabled children and sex: a real image of puberty]. Tokyo: Nihon Bunkakagakusha. Hori, Tomohisa. 2014. Shōgaigaku no aidentiti – Nihon ni okeru shōgaisha undō no rekishi kara [The identity of disability studies – from the history of disabled people’s movements in Japan]. Tokyo: Seikatsu shoin. Iida, Keisuke. 2004. “Human Rights and sexual abuse: the impact of international Human Rights law on Japan”. Human Rights Quarterly, (26): 428–53. Kim, Jeongmee (ed.). 2013. Reading Asian television drama: Crossing borders and breaking boundaries. London: IB Tauris. Kinsella, Sharon. 2013. “Cuties in Japan”. In Women, media and consumption in Japan, edited by Lise Skov and Brian Moeran, 230–64. Abingdon: Routledge. Kitô, Aya. 1986. Ichi rittoru no namida [One liter of tears]. Tokyo: FA shuppan.

Disabled Heroines 133 Kitô, Aya, and KITA. 2015. Ichi rittoru no namida [One liter of tears]. Tokyo: Gentôsha komikkusu. Levasseur, Mélanie, Lucie Richard, Lise Gauvin, and Emilie Raymond. 2010. “Inventory and analysis of definitions of social participation found in the aging literature: Proposed taxonomy of social activities”. Social Science & Medicine 71 (12): 2141–49. https://doi.org/10.1016/j.socscimed.2010.09.041. Madge, Leila. 1998. “Capitalizing on ‘cuteness’: The aesthetics of social relations in a new postwar Japanese order”. Japanstudien 9 (1): 155–74. https:// doi.org/10.1080/09386491.1998.11827119. Martin Ginis, Kathleen A., M. Blair Evans, W. Ben Mortenson, and Luc Noreau. 2017. “Broadening the conceptualization of participation of persons with physical disabilities: A configurative review and recommendations”. Archives of Physical Medicine and Rehabilitation 98 (2): 395–402. https:// doi.org/10.1016/j.apmr.2016.04.017. Matsubara, Yasuko. 1979. Terebi dorama no joseigaku [Women’s studies of television drama]. Tokyo: Sôtakusha. Min, Yuen Shu. 2011. “Last Friends, beyond friends – articulating non-normative gender and sexuality on mainstream Japanese television”. Inter-Asia Cultural Studies 12 (3): 383–400. https://doi.org/10.1080/14649373.2011.578796. Mithout, Anne-Lise. 2018. “‘Récupérer le sexe qui m’a été volé’. La sexualité comme affirmation de soi chez Asaka Yûho [Reclaiming the sex I was robbed of : sexuality as self-assertion in Asaka Yûho’s writing]”. Genre, Sexualité & Société 19. [Online] http://journals.openedition.org/gss/4200. DOI: 10.4000/ gss.4200. Mithout, Anne-Lise. 2020a. “Aoi Shiba no Kai : un mouvement de personnes handicapées face à l’eugénisme [Aoi Shiba no Kai: a movement of disabled people against eugenics]”. Cipango 24 (forthcoming). Mithout, Anne-Lise. 2020b. “Narrating disability in contemporary Japan : One liter of tears?” In Proceedings of the conference “The Body in Asian Literatures in the 20th et 21st Centuries: Discourses, Representations, Intermediality”, edited by Gérard Siary, Toshio Takemoto, and Victor Vuilleumier. Paris: Institut des civilisations (forthcoming). NHK Yoron chôsa bu. 2018. Terebi rajio shichô no jôkyô [The current situation of television and radio audience ratings] Tokyo: NHK. https://www. nhk.or.jp/bunken/research/yoron/pdf/20180901_5.pdf. Poerwandari, Elizabeth Kristi, Tara De Thouars, and Keiko Hirano. 2014. “Gender construction in five Japanese serial dramas: Fantasy and the real lives of Japanese youth”. Asian Journal of Women’s Studies 20 (2): 97–132. https://doi.org/10.1080/12259276.2014.11666183. Riessland, Andreas. 1998. “Sweet spots: The use of cuteness in Japanese advertising”. Japanstudien 9 (1): 129–54. Sata, Masunori, and Hideo Hirahara. 1991. A history of Japanese television drama : modern Japan and the Japanese. Japan Association of Broadcasting Art. Tokyo: Kaibunsha. Shakespeare, Tom. 2013. “The social model of disability”. In The disability studies reader, edited by Lennard Davis, 214–21. London: Routledge. Stibbe, Arran. 2004. “Disability, gender and power in Japanese television drama”. Japan Forum 16 (1): 21–36. https://doi.org/10.1080/09555800320 00189311.

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Stiker, Henri-Jacques. 2007. “Pour une nouvelle théorie du handicap. La liminalité comme double [For a new theory of disability. Liminality as a double]”. Champ psychosomatique 45 (1): 7–23. https://doi.org/10.3917/cpsy.045.0007. Sugino, Akihiro. 2007. Shôgaigaku : riron keisei to shatei [Disability studies : theoretical shape and scope]. Tokyo: Tokyo University Press. Toshimitsu, Keiko. 2016. Sengo Nihon ni okeru josei shōgaisha e no kyōseiteki na funin shujutsu [Forced eugenic surgery on disabled women in postwar Japan]. Kyoto: Ritsumeikan University Press. Yamada, Kiyoshi, and Toshiaki Ôno. 2018. “Pararinpikku hôsô ni tai suru shintai shôgaisha no koe – Pyongchang Pararinpikku no hôsô ni kan suru Web chôsa yori [Disabled people’s voice on the diffusion of Paralympic Games – based on a web survey on Pyongchang Paralympic Games]. Hôsô Kenkyû to Chôsa 11: 58–82. Yang, Fang-Chih Irene. 2013. “Remediating Japanese dramas: Exploring the politics of gender, class, and ethnicity in Loser-Dog Queen in Taiwan”. The Journal of Popular Culture 46 (5): 1070–91. https://doi.org/10.1111/ jpcu.12067. Yokosuka, Shunji. 1999. “Dansei shôgaisha no sekushuariti [Disabled men’s sexuality]”. Rihabiritêshon 410: 32–34. Yokozuka, Kôichi. 2007. Haha yo! Korosu na! [Mum! Don’t kill me!]. Tokyo: Seikatsu shoin.

8

The Education of Children with Disabilities in South African Online News Reports Elizabeth Walton and Judith McKenzie

Introduction As we start to write this chapter, a group of South African people with disabilities and disability rights activists is making a submission to the United Nations (UN) Committee on the Rights of Persons with Disabilities in Geneva. The group is arguing that the South African Department of Basic Education (DBE) is not doing enough to secure the realization of the right to an inclusive education, as envisaged by the UN Convention on the Rights of People with Disabilities. South Africa signed this Convention and the Optional Protocol in 2007 and in so doing committed the country to recognizing the rights of persons with disabilities to education and ensuring ‘… an inclusive education system at all levels’ (UN 2006, 24 (1)). The group submission to the UN committee echoes the findings of a Human Rights Watch report that was published in 2015. Titled ‘Complicit in exclusion,’ the report presented evidence that 500,000 children with disabilities are not in school in South Africa. These children experience discrimination in attempts to enrol in schools and in accessing ‘reasonable accommodations’ within schools (Human Rights Watch 2015). This is despite South Africa’s commitment to an inclusive education system, envisaged in the 2001 White Paper Six on Special Needs Education (Department of Education (DoE) 2001). The press has been quick to report on the failure of the government to provide education for children with disabilities, and our concern in this chapter is to explore how online newspaper articles portray this issue. Drawing on analytical tools derived from a broad critical theory, we advance a resistant reading of articles published between 2013 and 2018. We argue that these articles rehearse negative stereotypes about children and young people with disabilities, co-opting them into the journalistic expose of individual tragedy neglected within an uncaring system, but without framing the issues in wider systemic failure and the socio-historical context of apartheid. This sets up a vicious cycle where children who have impairments are disabled by an environment of systemic neglect. To provide some context of the conditions that have created such a mix, we first discuss the history of educational provision for children with disabilities in South Africa.

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Education of Children with Disabilities in South Africa The apartheid government which came to power in South Africa in 1948 inherited legislation which related to ‘The education of the handicapped child’ (Republic of South Africa (RSA) 1948, section 1). This legislation laid the groundwork for a medicalized approach to separate special education for children with disabilities. Section One of The Act of 1948 defined the ‘handicapped child’ as one who deviates from the majority, making disability a deviant characteristic. The focus was on what the child cannot do (i.e. benefit from ‘normal’ instruction) and should not do (attend ‘ordinary’ classes because it would be harmful to ‘him’ or others). In the light of this, the 1948 Act made provision for ‘special schools and homes for the classes of handicapped children’ (RSA 1948, Section 2(1)), with the assumption that different types of ‘handicap’ demanded different schools. The government built on this 1948 Act with subsequent policies that secured special education for white children under the auspices of a separate special education department in conjunction with the four provincial education departments. Special education for children of other races was handled by the education departments set up for each race group and was not administered apart from regular education. Very few special schools were built by these departments, and most special schools that existed for black children with disabilities were established and maintained by charitable or missionary organizations. Specializing in teaching children with disabilities was not offered in the black universities (Skuy and Partington 1990) and remedial teaching only began to be offered to a limited extent in black schools in the early 1990s (Nkabinde 1993). The result of these apartheid era policies was that the democratically elected government of 1994 inherited an education system that was highly fragmented, and which carried the legacy of inequitable and racist policies. The results of these policies included a large percentage of children with disabilities out of school (in 2001 only 20% of all children with disabilities were in special schools (DoE 2001, 38)); inadequate specialist school and staff provision for the whole population; existing special schools clustered in former whites-only areas; and negative attitudes towards people with disabilities. To address these issues, the unified, non-racial Department of Education set up a commission to investigate and make recommendations about special needs and support in education. A major move in understanding support was the adoption of the concept of ‘barriers to learning’ which framed disability as one of the many barriers that children face in accessing quality education. While disability was represented as an element of diversity, the distinction between intrinsic barriers to learning (organic and within the child) and extrinsic such as poverty or an inflexible curriculum was maintained. The commission’s report recommended the integration of the special and

Education of Children with Disabilities 137 ordinary education system in a seamless educational support system, and in 2001, White Paper Six: Special Needs Education: Building an Inclusive Education and Training System was published. White Paper Six (DoE 2001) sets out a framework for South Africa’s education system to become inclusive. Built on constitutional values like the right to education and freedom from discrimination, the White Paper envisages an education system where difference is valued, participation is maximized and diverse learning needs are met through changed attitudes, behaviours and teaching methodologies. The binary distinction between psychosocial barriers on the one hand and organic barriers on the other was retained in considering these learning needs. Various strategies were to be implemented to achieve this vision of inclusive education, including improving special schools; converting some schools to become ‘full-service schools’ with the capacity to include children with moderate support needs; teacher education; and the development of support structures at various levels in the system. The strategy is predicated upon the two pillars of (a) screening, identification, assessment and support (DBE 2014) and (b) curriculum differentiation to enable an effective response to diverse learning needs (DBE 2011). The research literature shows that the years since 2001 have seen some progress towards more inclusive schooling (Walton 2011) but also significant evidence of the non-implementation of the policy. Reasons for this are given as inadequate expenditure and poor resourcing; negative attitudes towards difference; teachers’ sense of un(der)preparedness for inclusive classrooms; and an inflexible curriculum (Donohue and Bornman 2014). The implementation of policy has also demonstrated a complex practice around disability where it has become less visible as a distinct entity but rather as but one form of diversity to be dealt with through inclusive classroom practice. However, disability also becomes highly visible through elaborate assessment and placement practices that ultimately serve to place children with disabilities in segregated settings on the pretext of having high levels of support (McKenzie, Kelly and Shanda 2018). Despite these legislative and policy initiatives, the exclusion of children with disabilities from schooling has continued (Fleisch, Shindler and Perry 2012), and has become an issue of public interest, as evidenced by various newspaper articles. This is not unique to South Africa, and news articles on matters to do with disability have captured the attention of scholars.

Disability in the News Media both reflect and reproduce extant societal attitudes towards and ideas about disability (Phillips 2012). Media shape attitudes through topic selection, i.e. what the article is about, where the article is found, i.e. news articles or features like letters and reviews, and what terminology is used (Wilkinson and McGill 2009). It has been shown that

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media representations of people with disabilities are problematic (Zhang and Haller 2013), either because people with disabilities are invisibilized or because the media perpetuate stereotypes. Barnes (1992) notes common media stereotypes of disabled people as pitiable and pathetic, as a burden, as incapable of participating in community life and as victims of violence, amongst others. These stereotypes have been linked to a medicalized view of disability, where the focus is on people’s needs for medical support; to a social pathology model, which portrays people with disabilities as socially disadvantaged and in need of social support; and to a ‘supercrip’ model, which describes people with disabilities as superhuman, overcoming impossible odds (Clogston 1990 in Zhang and Haller 2013). Wood (2012) further notes that the media tend to focus on either the over or under achievement of people with disabilities, thereby obscuring their actual experience. This serves to distance people with disabilities from the consumers of media who come to perceive disability as a challenge to be overcome or succumbed to, rather than a complex social process. In South Africa, the ‘Ag shame’ category of stereotype has been identified (McDougall 2006). Named after a local idiom that signifies tragedy and pity, this stereotype captures ‘that disability is always pathetic, that disability is dependent. It’s presented as disabled people are very innocent, and very much deserving of one’s sympathy’ (McDougall 2006, 388). The ‘Ag shame’ stereotype has elements of the social pathology model, in that people with disabilities are cast as needing support because of their own helplessness.

A Critical Approach Our approach to the news articles is informed by analytical traditions that emanate from critical theory, which ‘insists on revealing power dynamics’ (Meekosha and Shuttleworth 2009, 59). These analytical traditions are critical disability studies and critical literacy. They have in common a ‘critical distancing from, and then oppositional reengagement with, the dominant culture’ (Brookfield 2005, 13). Critical disability studies, says Goodley (2013, 2017), engages with the corporeality of disability and with inter/transsectionality, acknowledging the matrices of power that dis/privilege various identity markers. It challenges ableism and the hegemony of normative notions of what it means to be human and resists the pathologization of difference. Critical disability studies opposes binary thinking and is concerned with the complex ‘relational, cultural and psychological implications of disability’ (Flynn 2017, 155). In this sense it represents an evolution and increasing complexity of the original formulation of the social model with its sharp divide between impairment and disability and its strong historical materialist foundation (Meekosha and Shuttleworth 2009). The emphasis on cultural, psychological and discursive elements of critical disability studies is not without its critics especially in its

Education of Children with Disabilities 139 application in the Global South. Grech (2017, 18), for example, expresses the view that: Abstract projects [critical disability studies] …. may constitute a gross offence to disabled people preoccupied with very material poverty and oppression, for whom decolonisation is about freedom of their land, labour, religion, knowledge and bodies, all of which are historically referential. We are acutely aware of this tension in our discursive analysis and keep the material consequences of years of apartheid and continuing poverty in our sights when engaging with the news articles. Critical literacy refers to the ‘use of the technologies of print and other media of communication to analyze, critique, and transform the norms, rule systems, and practices governing the social fields of everyday life’ (Luke 2012, 5). The central tenets of critical literacy have been taken up in analyses of verbal text, visual images and multimodal texts. These approaches all work with the assumption that ‘… all texts are positioned and positioning’ (Janks 2010, 61), and that this positioning has an effect on readers. Exposing these effects is the task of the critical reader. There is no ‘universal model’ (Luke 2012, 9) of critical literacy, or of the critical analysis of texts, but many approaches reflect in some way Fairclough’s (2001) Critical Discourse Analysis. This embeds texts within processes and possibilities of production and interpretation, which, in turn, are embedded in wider sociocultural practices (Fairclough 2001; Janks 2005). These three layers offer ‘stages’ of analysis, first in terms of the description of the text in which its properties (linguistic and visual features) are considered. The second stage is interpretation which refers to the interaction process between the participants (text producer and text analyst) and the text. Third is the explanation stage. The objective of this stage is, … to portray a discourse as part of a social process, as a social practice, showing how it is determined by social structures, and what reproductive effects discourses can cumulatively have on those structures, sustaining them or changing them Fairclough (2001, 135) Critical disability studies informs the interpretation and explanation of the texts we analyse, as we are particularly interested in how they work to position disability within the wider South African discourses about education and educational neglect. We are concerned to expose the ways in which particular, taken-for-granted ways of viewing the world are legitimated and habituated through the news articles. Some of these taken-for-granted views include disability being regarded as ‘something static, something beheld from afar, not complex, not shifting in meaning’ (Biklen 2000, 339). Related to this unwillingness to engage with

140 Elizabeth Walton and Judith McKenzie the complexity of disability is a simplistic notion that there are ‘two educational systems – one for disabled students and one for everyone else’ (Erevelles 2000, 25). In this chapter, we offer a resistant reading of selected news articles. The idea of resistant reading is aligned to Freebody and Luke’s (1990, 13) fourth role of the reader, the ‘text analyst.’ The other roles are as ‘code breaker’ (8), ‘text participant’ (9) and ‘text user’ (10). The text analyst is aware of how language and ideology work in the design of the text to position both the topic and the reader, and understands how this contributes to certain perspectives being built and reinforced. Resistant reading of media also echoes Stuart Hall’s notion of ‘resistant spectatorship’ (1973, in Tewell 2016). Resistant spectatorship understands but opposes the intended messages of texts and challenges the dominant beliefs that the texts encode. The reader or viewer is strongly agentic in this engagement with the text, and ‘reads a text against itself’ (Tewell 2016, 291). Janks (2010, 22) explains resistant reading as The interrogation of texts …[that] implies that readers recognise texts as selective versions of the world; they are not subjected to them and they can imagine how texts can be transformed to represent a different set of interests.

Methodology Our initial awareness of online news articles addressing the issue of the education of children with disabilities in South Africa came from our work in the field. Our concern about the ways in which the education of children with disabilities was presented led to this more systematic study. Based on the content of the articles we initially encountered, we conducted a Google search with the search terms ‘news,’ ‘disability,’ ‘special education needs,’ ‘education’ and ‘South Africa.’ We chose to limit the date of publication to the five years prior to 31 January 2018 to ensure that the analysis could be regarded as reasonably current and represents a time period in which inclusive education policy was well into the implementation stage. This search yielded 28 articles from online news sites. Due to the retrospective nature of the analysis, we limited the work to online news articles, acknowledging that there may be other articles in the print news which we could not easily access. We then further restricted the search to free-to-read articles that were published in English. We excluded items that were primarily multi-media, i.e. video rather than text report, so the analysis was not done across genres. On close reading of the content, further articles were excluded, based on whether they were, in fact, about schooling for children with disabilities. This process yielded 15 articles, which are presented in Table 8.1 together with available information on the publication. All links were

Education of Children with Disabilities 141 Table 8.1 A nalysed articles from 31 January 2013 to 31 January 2018 News platform

Articles by URL

No place for disabled children in KZN’s rural schools. Victoria John https://mg.co.za/article/2014-10-17-noplace-for-disabled-children-in-kzns-ruralschools Learners with disabilities need tech. Lloyd Gedye https://mg.co.za/article/2016-05-27-00learners-with-disabilities-need-tech Struggle continues for disabled children. Victoria John https://mg.co.za/article/2015-02-06struggle-continues-for-disabled-children Disabled pupils’ hostel of horror. Victoria John https://mg.co.za/article/2013-08-30disabled-pupils-hostel-of-horror Blind schooling in ‘shocking’ state. Tim Fish Hodgson & Silomo Khumalo https://mg.co.za/article/2015-06-11-blindschooling-in-shocking-state Schools deaf, blind to pupils’ needs. Victoria John https://mg.co.za/article/2015-11-23-schoolsdeaf-blind-to-pupils-needs Thousands of EC special needs pupils ‘being HeraldLIVE is the online presence of The set up for failure’ Ntombesizwe Botha. Herald, self-described as ‘the voice of Nelson Mandela Bay’ in the Eastern Cape www.heraldlive.co.za/news/2017/03/06/ thousands-ec-special-needs-pupils-setof South Africa. HeraldLIVE publishes failure/ ‘fresh news, insights, opinions, sport and entertainment reports all day long, seven days a week on a fully mobile responsive website’ Source: www.heraldlive.co.za/about-us/ SowetanLIVE says that it is, ‘SowetanLIVE, ‘I want to read, write,’ Bongekile Macupe www.sowetanlive.co.za/ the website of the Sowetan, the Englishnews/2015-02-21-i-want-to-read-write/ language South African daily newspaper that started in 1981 as a liberation struggle publication … The website carries content from the print edition of the Sowetan along with unique onlineonly content … general and political news; entertainment and celebrities; soccer and other sport … It is one of South Africa’s largest online news publications, with more than 1.5-million readers per month’ Source: www.sowetanlive.co.za/about-us/ Mail & Guardian Online Describes itself as ‘A pan-African daily online newspaper, published all day, all week, aimed at serious and not-so-serious readers’ The newspaper describes its readers as ‘Broad-based readership of South Africans and Africans who prefer their daily news to be indepth and insightful. Plus a large readership abroad of expats, would-be tourists, foreigners with a special interest in Africa and more. A generally argumentative bunch’ Source: https://mg.co.za/page/about-us

(Continued)

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News platform

Articles by URL

IOL Independent Media includes 20 of South Africa’s ‘most prominent newspapers.’ IOL (Independent Online) is ‘Independent’s digital offering, and brings millions of readers breaking news as events happen in the country and around the world. With a growing daily unique online audience, iol.co.za is one of the largest news and information websites in South Africa.’ Source: www.iol.co.za/about-iol

Special needs education learners achieved 906 bachelor passes. Noni Mokati www.iol.co.za/news/south-africa/gauteng/ special-needs-education-learnersachieved-906-bachelor-passes-12612143. 4 January 2018 Calls for more special needs schools in SA. Marvin Charles www.iol.co.za/capeargus/news/callsfor-more-special-needs-schoolsin-sa-10285985. 14 July 2017 9 600 special needs children on school waiting lists. ANA reporter www.iol.co.za/news/south-africa/9-600special-needs-children-on-school-waitinglists-7662646. 8 February 2017 Special needs schools lack support staff. Ishara Dhanook www.iol.co.za/thepost/special-needsschoolslack-support-staff-12304086. 3 December 2017 ‘My disabled child travels 70km to attend school.’ Benida Phillips www.iol.co.za/news/south-africa/northerncape/my-disabled-child-travels-70km-toattend-school-7510132. 26 January 2017 Special schools out of reach of poor. Jabulile S. Ngwenya www.iol.co.za/news/south-africa/westerncape/special-schools-out-of-reach-ofpoor-1949731. 23 November 2015 No room in schools for disabled kids. Charlotte Chipangura www.iol.co.za/lifestyle/family/parenting/ no-room-in-schools-for-disabledkids-1549502. 19 July 2013

accessed and confirmed live on 5 February 2018, and a printable version was downloaded for each article. This was done in acknowledgement of the instability of online content, and knowing that some platforms remove articles and archive them. The 15 articles formed the data set for this study, and the set was deemed broad enough to provide a range of media outlets across the years, while also allowing for an in-depth analysis of each article. The texts, as online news articles, are multimodal texts, which means that they incorporate ‘visual images, hypertext, and graphic design elements along with written text’ (Serafini 2011, 342). Analysing the texts required that attention was given to the constituent parts of the texts, while also attending to the ways in which these work together. Visuals,

Education of Children with Disabilities 143 for example, can support or subvert the message of the verbal text (Janks 2010). While acknowledging the significance of the visual components of the texts, we have, in the interest of focus and brevity in this chapter, excluded the visual image from our analysis. The analysis sought to answer the questions of what the articles said about children with disabilities and their education, and how this was conveyed. To establish what the articles said, we conducted a thematic analysis (McMillan and Schumacher 2010) on the articles. This involved a first level of coding of the content of the texts, finding patterns of repetition and then clustering the codes into categories. Through this process, we identified four major concerns regarding the education of children with disabilities which are repeated across the articles. These are access to schooling, quality of schooling, government responses and distinctions between the demands of different ‘types’ of disability. Then, using Fairclough’s (2001) notions of description and interpretation, we sought to identify the stylistic and other devices chosen by the article writers to convey their message and what the possible intent and effect of these choices are. We identified linguistic features of the texts and also focused on the headlines. These linguistic features included lexical choices, transitivity, voice, direct and indirect speech, mood, tense and modality (Janks 2010, 74–75). Within the constraints of this chapter, we present some of the ‘patterns of use’ (Janks 2010, 73) of linguistic features that can be found in a range of the texts. The final aspect of analysis is social analysis or explanation (Fairclough 2001). This reflects a resistant reading of these texts, focusing on the sociocultural and political positioning of the topic, and the reader. We are more than aware of the limitations of this study. It is small, context-bound and conducted by two people. There may be more articles online than those we used, and we recognize the role of search engine optimizers (SEOs) in determining what is found. We are also acutely aware that a discussion of the important aspects of the ‘institutional and economic’ structures of the newspapers and their ‘political relations’ (Fowler 2001, 90) is beyond the scope of this chapter. Despite this, we suggest that the media serve as an indicator of societies’ progress (or lack thereof) in realising the rights of people with disability and that there is continued value in critically engaging with the media’s construction of disability. In the section that follows, we outline what the online media reports about schooling for children and young people with disabilities in South Africa.

Disability and Schooling: What the Online News Media Reports A Similar Story The 15 newspaper articles analysed rehearse a similar story, with recurring elements. The first issue concerns children with disabilities’ formal

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access to schooling, and special schooling in particular. Here, the following are highlighted: • • •

•

There are numbers of children with disabilities not in school (in nine of the articles). There are inadequate special schools (in nine of the articles). There are various barriers to accessing the schools that exist, including cost for parents, distance to be travelled, inadequate boarding facilities and schools unable or unwilling to enrol children (in six of the articles). The second issue concerns the quality of schooling that children with disabilities experience, either in mainstream or special schools.

On this issue, the articles report: • • •

Special schools lack adequate staff, with extant staff having insufficient knowledge to teach children with disabilities (in ten of the articles). Special schools lack resources, including equipment, assistive devices and infrastructure (in five of the articles). Education in the mainstream does not meet the learning needs of children with disabilities (in four of the articles).

Third, the education department is seen as not fulfilling its mandate to ensure that children with disabilities realize their constitutional right to education (in nine of the articles) and has not adequately implemented the policy on inclusive education (in four of the articles). A fourth issue is the differentiation between disability that requires specialized teaching skills and technology (visual or hearing) and disability that requires care and relief of the burden on the family (intellectual and multiple). This is evident in varying degrees across the articles, with two having a clear focus on the specific technology and learning needs of blind learners. The message here is clear: children with disabilities constitute a problem on the basis of their impairment (Wood 2012). A simple binary between disabled and non-disabled is assumed (Goodley 2017) and disability corresponds with difficult-to-meet learning needs that are best addressed in segregated settings (Erevelles 2000). Disability as Individual Tragedy In delivering this content, the articles mostly reinforce the individual tragedy stereotype (‘Ag shame,’ in the South African idiom) about disability. In many cases this pity is directed towards the burden that the family faces rather than the needs of the child. This is achieved through telling individual stories, the use of numbers and lists, and headlines. These content and linguistic choices build patterns that convey three key messages about children and young people with disabilities and their schooling. These messages are that children and young people with

Education of Children with Disabilities 145 disabilities are deficient, pitiable and helpless; that ensuring the right to education for children with disabilities is an overwhelming problem; and that education for children with disabilities requires specialist provision in segregated settings. Before discussing these messages, we identify the content and linguistic choices made in the articles and their effect. Content and Linguistic Choices TELLING AN INDIVIDUAL STORY

The details and circumstances of individuals’ lives are told, ostensibly to make the story more personal, and to build readers’ empathy. Typically, the stories name caregivers, the child with a disability and details about their lives. In John (Mail & Guardian 2014), we read, Boniswa lives with his 30-year-old unemployed mother, Nonhlanhla Mthembu, and his retired grandmother in a house made of stones, mud and wooden poles… There are no books, toys or a TV, so Boniswa follows his mother around all day as she cooks and cleans. Later in the same article, the journalist reports sitting in another home … on the family’s brown suede lounge suite, but seven-year-old Neliswe can’t keep still. She has epileptic seizures about twice a year, despite being on medication. Her mother, Esther, says she is intellectually disabled because of the seizures. These accounts of people’s lives offer details that are peripheral to the story, like the nature and colour of their clothes and their furniture. The effect is to position the reader as a voyeur. The voyeur’s gaze remains contiguous with disability. From the freak shows of the past, to television documentaries about different bodies, to fiction that sensationalizes different behaviours and ways of being, disability is put on parade for audiences (Walton 2016). In the articles we examined, this voyeurism is compounded with ‘poverty porn’ – a genre (usually on television) that exhibits the hardships of people with limited incomes (Jensen 2014). The audience, in our case the reader, invades the privacy of the home and gazes at the subjects of the story. The gaze is unidirectional and consuming, and the distance created by the medium suspends the ‘don’t stare’ rule of etiquette that would operate in personal encounters. The quoted words of parents or caregivers add authenticity, and further personalize the stories. The parent of Bongani Bongolam in Chipangura (IOL 2015) is reported as saying, All the teachers at the crèches that I have taken him to always tell me not to bring him back saying he’s disruptive, hyperactive, doesn’t

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Elizabeth Walton and Judith McKenzie listen, doesn’t like to be helped or needs individual attention that they cannot afford as they have many other children to take care of.

The tale of schools rejecting children is repeated by parent Esther in John (Mail & Guardian 2014) who is quoted as saying, The ordinary school she is at said she isn’t allowed back next year because teachers complain that she is aggressive with the other children … She breaks all the things, windows … (Ellipsis dots in the original). This stylistic device gives voice to parents, but the quoted words will have been selected by the article writer. The critical reader must question why these quotes were selected, as it seems like they constitute graphic and forceful accounts of the deficits of the children. The intended effect is sympathy for parents whose children are not in school, but at the same time, builds the idea that children with disabilities are disruptive, and not really suited for ordinary schooling. They are out of control, ‘unruly bodies’ that will not be disciplined (Erevelles 2000, 33). The emphasis in these individual stories is on what children with disabilities cannot do. The individual story in John (Mail & Guardian 2013) is informed by the sister of a learner in a special school. The sister, Mbiza, is reported as saying that, ‘her deaf brother’s language skills are “very bad”. He can’t construct sentences. When he sends me text messages I can’t figure out what he’s saying.’ Another article by the same journalist (John, Mail & Guardian 2014) describes Boniswa, who is out of school, saying that, ‘He can’t read or write, and when I ask him to draw himself in the sand, he can’t do that either.’ Bongani, described by Chipangura (IOL 2015), is ‘still not potty-trained, can neither feed himself nor speak.’ Deficit is compounded with deviance, and children with disabilities are described as disruptive and even dangerous, almost subhuman. The special school described by John (Mail & Guardian 2013) is ‘… quiet, except for the occasional incoherent shout from a deaf pupil.’ The governing body chairperson of that school reports that ‘… a pupil allegedly raped another pupil’ adding that ‘It would not be the first time.’ This lack of sexual control reflects the stereotype of disabled people as sexually abnormal (Barnes 1992) and is echoed in the notion of people with disabilities being either promiscuous or asexual (McKenzie and Swartz 2011). NUMBERS AND LISTS

Charles (IOL 2017) and ANA reporter (IOL 2017) count the exact numbers of children who are on waiting lists for special schools, and report these in terms of each province. This suggests accurate reporting and

Education of Children with Disabilities 147 record keeping, and in the articles, it is designed to convey the scale and extent of the problem of inadequate schooling provision. Charles (IOL 2017) notes that the numbers provided by the Department of Education (in the region of 11,000 children) may be incorrect, as other sources give the number at 300,000 or beyond. Macupe (Sowetan Live 2015) offers a litany of the woes of children in a specific special school: The learners here have various disabilities, including cerebral palsy, spina bifida, muscular dystrophy, spinal muscular atrophy and in addition many children are epileptic. There are many children on medication including ARVs, epileptic medication and anti-psychotic drugs among others. The conditions of many of the children require special nursing care like care of pressure sores, bladder and bowel programmes for incontinent kids, monitoring the frequency of the epileptic fits and the routine treatment of the many minor ailments like scabies, flu, impetigo, ear infections and diarrhoea. This list constitutes over-lexicalization, which ‘… is the existence of an excess of quasi-synonymous terms for entities and ideas that are a particular preoccupation or problem in the culture’s discourse’ (Fowler 1991, 85). Over-lexicalization is typically used in news articles that focus on oppressed populations, and it gives a sense of excess or overabundance (Lean 2008). The list combines the medical terminology of diagnoses, with the colloquialisms of ‘kids’ and ‘fits,’ conveying disability in medical terms, and revealing an underlying disrespect. The list of ‘minor ailments’ is gratuitous, including ‘scabies’ and ‘diarrhoea’ which have particularly negative connotations. HEADLINES

Headlines in online news articles must attract readers and ‘lure’ (Kuiken et al. 2017, 1300) them in. For print publications, the main purpose of the headline is to offer some summary for the benefit of the reader browsing through a whole newspaper. The digital headline, by contrast, is ‘clickbait’ which is characterized by ‘Simplification, spectacularization, negativity, and provoking content’ (1303). The lexical choices made in devising the headlines for the analysed articles function as clickbait and reinforce the individual tragedy stereotype. Two of the articles refer to ‘special needs’ children, three refer to ‘special (needs) schools’ and five refer to children with disabilities, or disabled children (both terms would be acceptable in South Africa). Most headlines contain emotive words with negative connotations (e.g. ‘struggle’ (John, Mail & Guardian 2015), ‘hostel of horror’ (John, Mail & Guardian 2013), ‘shocking state’ (Fish Hodgson and Khumalo, Mail & Guardian 2015) and ‘failure’ (Botha, Herald Live 2017)) and signal lack or absence in some way

148 Elizabeth Walton and Judith McKenzie (e.g. ‘no place’ (John, Mail & Guardian 2014), ‘out of reach’ (Ngwenya, IOL 2015) and ‘lack support staff’ (Dhanook, IOL 2017)). Few verbs are used in the headlines, and those that do, use few material processes. This means there is little action suggested in the headlines, a state of being is presented. This is reinforced by the present tense, which gives a sense of truth and certainty (Janks 2010). The notion of disability as a static, intrinsic, organic state is presented rather than a dynamic state in interaction within the environment (Biklen 2000). The Message The articles position people with disabilities in particular ways and position the reader in relation to the subject. Taking headlines and written text into account, together the articles present the following messages. CHILDREN AND YOUNG PEOPLE WITH DISABILITIES ARE DEFICIENT, PITIABLE AND HELPLESS

The articles emphasize disability as deficit by focusing on what it is that children and young people with disabilities cannot do, and how their intellectual, physical and sensory skills are deficient in comparison to those of able children and young people. The articles reinforce ableist conceptions of disability as a devalued and negative state that does not conform to the compulsory norm of the perfect body that is fully human and deserving. A clear binary is created between those who are disabled or have special needs, and other children, which buttresses the assumption of the need for segregated educational provision. Critical disability studies leads us to ask about the ways in which these supposed binaries actually co-construct each other and far from being entirely separate entities, disability comes to define ability and vice versa (Campbell 2009). The existence of the children who do not belong in the regular school defines the regular school. The individual tragedy trope in the articles cast children with disabilities and their families as the passive victims of an uncaring education system and broader society. This is not to suggest that the system is not brutal and dehumanizing, but that the various people reported in the individual stories are seldom shown to be actors in their lives. The children and young people with disabilities do not speak for themselves in the articles; they are spoken about, or spoken for. The world is thus cast into two types of people: those who are weak, powerless and need help (the children with disabilities and their families); and those who (potentially) help them. As explained earlier, the vantage point of the powerful (reader/reporter) allows an invasive, even voyeuristic gaze on the details of people’s lives, including their impaired bodies, their

Education of Children with Disabilities 149 impoverished living conditions and their family arrangements. This, in turn, reinforces alterity as these poor children and people with disabilities are cast as very different from the presumed reader (able, schooled, literate and with internet access). ENSURING THE RIGHT TO EDUCATION FOR CHILDREN WITH DISABILITIES IS AN OVERWHELMING PROBLEM

The emphasis on the number of children with disabilities out of schools, the accounts of the extent and severity of impairments among children and young people, and the emphasis on barriers to access (transport, cost, etc.), positions the education of children and young people with disabilities as an insurmountable problem. While the reader may read these details with sympathy for the people affected, there is a sense in which the problem of a lack of educational access is so complex that it is beyond resolution. In 1993, Coleridge expressed concern about the effects of overestimating the incidence of disability. He commented, …the size of the problem is likely to appear so daunting for hardpressed governments and those planning services with slim resources that they may be reluctant even to embark on concerted action (108). We are not suggesting here that the news reports overestimate the extent of children and young people with disabilities who are out of school – in fact, they are probably underestimated. But we do maintain that the articles present the issue as such a ‘daunting’ problem that preserving the status quo seems a more expedient and efficient option. Furthermore, the wider context of poor educational outcomes of regular schools in South Africa ought to be considered. Spaull (2015, 34) notes that: ‘The poor quality of education that learners receive helps drive an intergenerational cycle of poverty where children inherit the social standing of their parents or caregivers, irrespective of their own abilities or effort.’ This context is not invoked in the discussion of education of children with disabilities as their impairment overshadows all other barriers that they might face and becomes the problem to address. However, children with disabilities face the same socio-economic barriers that children without disabilities face and would equally benefit from systemic interventions designed to address these barriers. EDUCATION FOR CHILDREN WITH DISABILITIES REQUIRES SPECIALIST PROVISION IN SEGREGATED SETTINGS

Most of the articles do not question the assumption of the need for more special school provision for children and young people with disabilities. While mention is made of inclusive education, it is generally described

150 Elizabeth Walton and Judith McKenzie as having failed. The solution to the compounded problem of children with disabilities not in school, the lack of places in special schools, and inadequate resourcing of special schools is not a call for the effective implementation of inclusive schooling, but for the expansion and strengthening of segregated special schooling. This is in spite of the Salamanca Statement’s assertion that developing and resourcing inclusive mainstream schools are more cost effective than building more special schools in a country’s endeavour to address educational provision for children with disabilities (UNESCO 1994). Walton (2016) writes elsewhere about how newspaper articles in South Africa position inclusive education as a challenge, with overwhelming barriers to its implementation. These 15 articles contribute to this negative public discourse. John (Mail & Guardian 2013) specifically includes a subheading ‘Integration policy falls flat’ and indicates its distance from inclusive education by putting the word ‘inclusive’ into scare quotes in the text. Taken together, the articles present children with disabilities as very different, very deficient and very deviant and so confirm in readers’ minds that separate special schooling is required. These articles shore up the stereotype of ‘The Disabled Person as Incapable of Participating Fully in Community Life’ (Barnes 1992, np). This stereotype is built around absence from valued community activities, in this case schooling, and fuels the idea that separate provision is the only option. Government Failure The analysed articles rehearse public frustration with inadequate government service delivery and contribute to the ‘extensive and voluminous’ media coverage of ‘maladministration or mismanagement of public resources’ (Malila 2017, 2). They follow a ‘formulaic pattern’ of reporting an event or situation (in this case, children or young people with disabilities or special schools), and then asking a government official to comment. Seven of the articles refer to actions that the government, through the education department, is taking to address schooling for children with disabilities. This includes information on mainstream schools that enrol children with disabilities (Macupe, Sowetan Live 2015), gathering data on numbers of children with disabilities who are out of school (John, Mail & Guardian 2015; Charles, IOL 2017) and responses to situations raised in the articles (John, Mail & Guardian 2017; Botha, Herald Live 2017). Some of the articles mention legal and Non-Government Organizations which have become involved in the quest to secure children’s right to education (John, Mail & Guardian 2013–2015; Gedye, Mail & Guardian 2016; Phillips, IOL 2017) and three articles (ANA reporter, IOL 2017; Charles, IOL 2017; Chipangura, IOL 2013) note that the official opposition party in parliament has taken up the issue.

Education of Children with Disabilities 151 We see at least two problems with the pattern of reporting on government failure exemplified by these articles. The first is that instances of maladministration are reported like any other newsworthy event, and so inability to deliver on policy becomes normalized (Malila 2017). The events are individualized, and not linked with wider structural failure. In this case the link to the general education systems is not made and children with disabilities are seen as an anomaly, rather than a sizeable proportion of children entitled to compulsory education. The problem with this, says Malila (2018, np), is ‘There’s little or no investigation of how this maladministration was allowed to occur and how it will be prevented from happening again.’ The result, she maintains, is a citizenry without the contextual knowledge needed to hold the government to account. The second problem is that the 15 analysed articles approach the issue of the lack of access to education for children and young people with disabilities as if it has no historical context, implying that the postapartheid government is solely responsible for the deplorable state of affairs described. In so doing, we argue that these articles contribute to the manufacture of amnesia, or what Steyn (2012) calls the ‘ignorance contract.’ Apartheid’s legacy cannot be underestimated in any accounts of the present failures of the post-apartheid government. This is no less evident in the provision of education for children and young people with disabilities. From education-specific legacies of special schools being set up in whites-only areas and specialist training only being available for white teachers, to the broader political challenges of ‘… balancing elements of social justice, the desire to be internationally competitive and the need for fiscal discipline’ (Spreen and Vally 2010, 140–141), the post-apartheid government is faced with a herculean task in securing both educational access and redress. By only describing the failures of the current regime to address the right to education for children with disabilities, the systemic injustices of apartheid are erased and blame is placed squarely on the current political dispensation. Readers can experience the intended shock and pity as they read the articles, without any inconvenient reminder of how apartheid engendered and shaped the current ‘challenges.’ It is here that we need to take up the challenge to critical disability studies made by Grech (2017) and Erevelles (2000) to move beyond the realm of the discursive into the material and structural conditions that maintain inequality across a range of marginalized identities.

A Resistant Reading In our resistant reading we reject the binaries between disabled/nondisabled, regular/special school, normal/abnormal and so on. The categories depend on each other for their existence and in the education

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context one must begin to ask what purpose special schools serve. The articles show an ambivalent telling of this with special schools often being seen as the only option but also not being represented as good places to go to. If we move away from the binaries and begin to understand how these supposed opposites actually co-construct and define each other (Campbell 2009), we might gain deeper insight into the problem of poor educational outcomes in South Africa and explore the possibilities of quality education for all children. The taken-for-granted adoption by the media of an ableist perspective that devalues disability must also be challenged (Wood 2012). Nuanced stories that move away from the under or overachieving tropes of disability make room for seeing potential as well as needs. Granting parents and their children with disabilities agency in addressing their challenges can build a different perception of families as resourceful and resilient. Foundational to this effort is moving away from an individual, medical, tragedy model that defines the person by their disability in a negative, oppressive way. Importantly, this is not about the denial of difference but the valuing and accommodation for difference in meaningful ways that enable access and participation in education (McKenzie et al. 2018).

Conclusion Representation matters. Because of this, many scholars have researched the ways in which disability is represented in the media. Our contribution is to use the tools of critical literacy and concepts from critical disability studies to expose ways in which the news media in South Africa represent the education of children with disabilities. This is important, because the news media both shape and reflect public opinion, and UNESCO (2018, 7) reminds us that ‘Communities with discriminatory beliefs and attitudes can prevent learners from accessing education opportunities.’ It seems that not much has changed since 2006 when McDougall reported on the representation of people with disabilities in the South African media. The same stereotypes can still be found in online news articles with individual tragedy (or ‘Ag shame’) prevailing as the dominant trope in reports about education. In this chapter, we have revealed the language and content choices in news articles that work together to position children and young adults with disabilities in this way, and have shown how readers are positioned in relation to these subjects. Instead of promoting affirming disability awareness and advocacy, and locating the experiences of children and young people with disabilities within a context of systemic discrimination and oppression, the articles evoke shock and pity, but ultimately achieve little more than an exercise in public handwringing. We would like to see news outlets challenged to explore the issue of the education of children with disabilities in ways that move away from understanding special and ordinary

Education of Children with Disabilities 153 schools as binary opposites. Instead, they should consider how and in what ways children with or without disabilities access a better quality education through addressing all barriers to learning. There also needs to be a concerted attempt to portray disability in a much more complex and nuanced way which allows individual agency, without resorting to stereotypes, to challenge ableist views of disability as deficit. Finally, we argue that these analyses cannot be ahistorical, and the roots of deprivation need to be understood from the country’s apartheid past.

References Barnes, Colin. 1992. Disabling imagery and the media: An Exploration of the Principles for Media Representations of Disabled People. Krumlin: The British Council of Organisations of Disabled People and Ryburn Publishing Limited. Accessed 03 January 2020 from https://disability-studies.leeds.ac.uk/ wp-content/uploads/sites/40/library/Barnes-disabling-imagery.pdf Biklen, D. 2000. “Constructing inclusion: Lessons from critical disability narratives.” International Journal of Inclusive Education 4: 337–353. Brookfield, Stephen. 2005. The power of crtical theory for adult learning and teaching. Maidenhead: Open University Press. Campbell, Fiona. 2009. Contours of ableism: The production of disability and abledness. Basingstoke: Palgrave. Coleridge, Peter. 1993. Disability, liberation, and development. Oxford: Oxfam. Department of Basic Education (DBE). 2011. Guidelines for responding to learner diversity in the classroom through curriculum and assessment policy statements. Pretoria: Department of Basic Education. Department of Basic Education (DBE). 2014. National strategy on screening, identification, assessment and support. Pretoria: Department of Basic Education. Department of Education (DoE). 2001. White paper six: Special needs education. Building an inclusive education and training system. Pretoria: Department of Education. Donohue, Dana and Juan Bornman. 2014. “The challenges of realising inclusive education in South Africa.” South African Journal of Education 34(2): 1–14. Erevelles, Nirmala. 2000. “Educating unruly bodies: Critical pedagogy, disability studies, and the politics of schooling.” Educational theory, 50(1): 25–47. Fairclough, Norman. 2001. Language and power. 2nd ed. Pearson: Harlow. Fleisch, Brahm, Jennifer Shindler, and Helen Perry. 2012. “Who is out of school? Evidence from the Statistics South Africa Community Survey.” International Journal of Educational Development 32(4): 529–536. doi: 10.1016/ j.ijedudev.2010.05.002. Flynn, Susan. 2017. “Engaging with materialism and material reality: Critical disability studies and economic recession.” Disability & Society 32(2): 143–159. doi: 10.1080/09687599.2017.1284650. Fowler, Roger. 1991. Language in the news: Discourse and ideology in the press. London: Routledge. Freebody, Peter and Allan Luke. 1990. “Literacies programs: Debates and demands in cultural context.” Prospect: An Australian Journal of TESOL 5(3): 7–16.

154 Elizabeth Walton and Judith McKenzie Goodley, Dan. 2013. “Dis/entangling critical disability studies.” Disability & Society 28(5): 631–644. doi: 10.1080/09687599.2012.717884. Goodley, Dan. 2017. Disability studies; An interdisciplinary introduction, 2nd ed. London: Sage. Grech, Sean. 2015. “Decolonising Eurocentric disability studies: why colonialism matters in the disability and global South debate.” Social Identities 21:1, 6–21. doi: 10.1080/13504630.2014.995347. Human Rights Watch. 2015. “Complicit in exclusion” South Africa’s failure to guarantee an inclusive education for children with disabilities. Accessed 1 May 2018 from www.hrw.org/report/2015/08/18/complicit-exclusion/ south-africas-failure-guarantee-inclusive-education-children. Janks, Hilary. 2005. “Language and the design of texts.” English Teaching: Practice and Critique 4(3): 97–100. Janks, Hilary. 2010. Literacy and power. New York: Routledge. Jensen, Tracey. 2014. “Welfare Commonsense, Poverty Porn and Doxosophy.” Sociological Research Online 19(3): 277–283. doi: 10.5153/sro.3441. Kuiken, Jeffrey, Anne Schuth, Martijn Spitters, and Maarten Marx. 2017. “Effective headlines of newspaper articles in a digital environment.” Digital Journalism 5(10): 1300–1314. doi: 10.1080/21670811.2017.1279978. Lean, Mei Li. 2008. “‘New kids on the block’: The discursive construction of two new premiers by the mass media.” Critical Approaches to Discourse Analysis across Disciplines 2(1): 59–75. Accessed 26 April 2018 from http:// cadaad.org/ejournal. Luke, Allan. 2012. “Critical literacy: Foundational notes.” Theory into Practice 51(1): 4–11. doi: 10.1080/00405841.2012.636324. Malila, Vanessa. 2017. Beyond watchdog journalism: Media and social accountability. Grahamstown: Public Service Accountability Monitor. Accessed 9 May 2018 from http://psam.org.za/wp-content/uploads/2016/11/ Role-of-media-in-Social-Accountability-Final.pdf. Malila, Vanessa. 2018. “South Africa’s print media is failing to empower citizens on corruption.” The Conversation, 2 May. Accessed 9 May 2018 from https://theconversation.com/south-africas-print-media-is-failing-to- empowercitizens-on-corruption-95315. McDougall, Kathleen. 2006. “Ag shame and superheroes: Stereotypes and the signification of disability.” In Disability and Society, edited by Brian Watermeyer, Leslie Swartz, Theresa Lorenzo, Marguerite Schneider and Mark Priestley, 387–400. Pretoria: HSRC Press. McKenzie, Judith, Jane Kelly and Nozwelo Shanda. 2018. Starting where we are: Situational Analysis of the Needs of Learners with Severe to Profound Sensory or Intellectual Impairments in South Africa. Disability Studies Division, Department of Health and Rehabilitation Sciences, University of Cape Town. Accessed 14 May 2019 from http://www.uct.ac.za/sites/default/files/image_tool/ images/147/disability/tedi/CA52_IQE%20book_web%20ready.pdf McKenzie, Judith, and Leslie Swartz. 2011. “The shaping of sexuality in children with disabilities: A Q methodological study. Sexuality and Disability, 29(4): 363–376. McMillan, James, and Sally Schumacher. 2010. Research in education: Evidence based enquiry. 7th ed. New Jersey: Pearson.

Education of Children with Disabilities 155 Meekosha, Helen, and Russell Shuttleworth. 2009. “What’s so ‘critical’ about critical disability studies?” Australian Journal of Human Rights 15(1): 47–75. doi: 10.1080/1323238X.2009.11910861. Nkabinde, Zandile. 1993. “The role of special education in a changing South Africa.” The Journal of Special Education 27(1): 107–114. Phillips, Sarah D. 2012. “Representations of disability in print news media in postsocialist Ukraine.” Disability & Society 27(4): 487–502. doi: 10.1080/09687599.2012.662826. Republic of South Africa (RSA). 1948. Act 9. Government Gazette 3960. Pretoria: Government Printers. Serafini, Frank. 2011. “Expanding perspectives for comprehending visual images in multimodal texts.” Journal of Adolescent & Adult Literacy 54(5): 342–350. doi: 10.1598/JAAL.54.5.4. Skuy, M., and Partington, H. 1990. “Special education in South Africa.” International Journal of Disability 37(2): 149–157. Spaull, Nic. 2015. “Schooling in South Africa: How low-quality education becomes a poverty trap”. South African Child Gauge, 12: 34–41. Spreen, Carol Anne, and Salim Vally. 2010. “Prospects and pitfalls: A review of post-apartheid education policy research and analysis in South Africa.” Comparative Education 46(4): 429–448. doi: 10.1080/03050068.2010.519478. Steyn, Melissa. 2012. “The ignorance contract: Recollections of apartheid childhoods and the construction of epistemologies of ignorance.” Identities 19(1): 8–25. doi: 10.1080/1070289X.2012.672840. Tewell, Eamon. 2016. “Toward the resistant reading of information: Google, resistant spectatorship, and critical information literacy.” Portal: Libraries and the Academy 16(2): 289–310. Accessed 16 February 2019 from https://muse.jhu.edu/ UNESCO. 1994. The Salamanca Statement and framework for action. Paris: UNESCO. UNESCO. 2018. Concept note for the 2020 Global education monitoring report on inclusion. Paris: UNESCO. Accessed 16 February 2019 from https:// unesdoc.unesco.org/ark:/48223/pf0000265329. United Nations. 2006. Convention on the rights of persons with disabilities and optional protocol. Accessed 1 May 2018 from www.un.org/disabilities/ documents/convention/convoptprot-e.pdf. Walton, Elizabeth. 2011. “Getting inclusion right in South Africa.” Intervention in School and Clinic 46(4): 240–245. doi: 10.1177/1053451210389033. Walton, Elizabeth. 2016. The language of inclusive education. Milton Park: Routledge. Wilkinson, Penny, and Peter McGill. 2009. “Representation of people with intellectual disabilities in a British Newspaper in 1983 and 2001.” Journal of Applied Research in Intellectual Disabilities 22(1): 65–76. doi: 10.1111/ j.1468–3148.2008.00453.x. Wood, L. 2012. A Critical analysis: Overview of the media. Disability planet. Accessed 19 December 2018 from www.disabilityplanet.co.uk/criticalanalysis.html. Zhang, Lingling, and Beth Haller. 2013. “Consuming image: How mass media impact the identity of people with disabilities.” Communication Quarterly 61(3): 319–334. doi: 10.1080/01463373.2013.776988.

9

Mass Media Use by Individuals with Disabilities in Germany Compared to the United Kingdom Ingo Bosse and Annegret Haage

Introduction The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that every participating country has the political mandate to design public communication so that everyone can participate in a free and unrestricted way. The mandate encourages ‘the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities’ (UN 2006, 15). Furthermore, the UN-CRPD clearly states that a database should be maintained for recording the current participation rate of disabled individuals and that efforts be undertaken to identify related limitations and barriers to participation (UN 2006, 23). But so far when it comes to debates about rights in the digital age and about digital and cultural citizenship in general, the experiences and voices of individuals with disabilities are minimally considered (Alper and Goggin 2017, 2). This chapter presents the first national German study which surveyed individuals with disabilities directly with the aim to answer the following questions: what forms of mass media do disabled individuals use and why? What media do they have access to and what barriers do they face in this regard? The study ‘Mediennutzung von Menschen mit Behinderungen’ (MMB16) was published in 2016 (Bosse and Hasebrink 2016). From an international perspective the United Kingdom has the most developed and regulated market for audio description, subtitling and sign language which appear on both free-to-air and subscription television (Ellis and Kent 2015). This goes along with the development of a differentiated knowledge base on the use of media by individuals with disabilities relating to accessibility. In the United Kingdom, access service obligations exist for both public and private television broadcasters as well as for domestic and non-domestic channels. Under the Communications Act 2003, the UK media and communications regulator, the Office of Communications (Ofcom), has set specific targets for the provision of access services since then. The British Study ‘Disabled consumers’ use of communications services: A consumer experience report’ (Ofcom 2015) has been created on this basis. Individuals with hearing,

Media Use by Individuals with Disabilities 157 visual, mobility or multiple impairments or learning disabilities were part of this nationwide quantitative British study. The survey includes questions on access to and use of communications services and devices, and the levels of limitations felt due to disability. The methodology allows for comparison between disabled and non-disabled individuals as well as across the different groups of individuals with disabilities. As it is in line with our own research, we use the 2015 Ofcom study as the main reference for the German MMB16 Study. The media systems of both countries are similar with a strong public broadcast, but the legislation differs regarding the accessibility of the media. Regarding the division of the target groups and the classification of media types, both studies are comparable. At the same time, there are some differences in the methodology that we will discuss in the methodology section.

Political and Legal Framework This section considers the political and legal framework for the accessibility of media in Germany and the United Kingdom with a focus on television and the internet. Like most European countries, Germany has a dual broadcasting system that consists of private and public broadcasters. In the federal system, the regulation of broadcasters is a matter of the federal states (‘Länder’). It is enshrined in the German ‘Rundfunkstaatsvertrag,’ an interstate broadcasting treaty. In this treaty, public and private broadcasters are called upon to increase their commitment to ensuring the accessibility of their programmes ‘within the limits of their technical and financial means’ (RStV, vom 20. Staatsvertrag 2017, 9). Since 2013, individuals with disabilities are fundamentally involved in the financing of public service broadcasting, although an exemption is typically offered to those on low incomes (Bosse 2016). At the time, the public service broadcasters agreed to improve the accessibility of their services. These agreements do not, however, apply in the same way for the private sector. Indeed, private broadcasters’ development of accessible services lags far behind that of the public service broadcasters and is essentially limited to subtitling a part of its programmes (Holsten and Hein 2017). Within the concluding observations of the initial report about the implementation of the UN-CRPD in Germany, the Committee on the Rights of Persons with Disabilities criticized the German government: The Committee is concerned about the lack of binding obligations for private entities, particularly private media and websites, to avoid creating new barriers and to eliminate existing barriers relating to accessibility and about the inadequate implementation of regulations governing accessibility and universal design. Committee on the Rights of Persons with Disabilities (2015, 4.)

158 Ingo Bosse and Annegret Haage The Committee further requested ‘public and private broadcasting bodies to evaluate their work comprehensively regarding the implementation of the right to accessibility, especially with respect to the use of sign language’ (Committee on the Rights of Persons with Disabilities 2015, 4). In contrast, in the United Kingdom, the legal conditions for public and private broadcasting companies are significantly consonant with the guidelines of the UN-CRPD. There are quotas for subtitling, audio description and sign language, which apply not only for public service channels but also for cable and satellite broadcasting channels. In their first year of operation, non-public service channels are required to meet the following targets: 10% subtitling, 2% audio description and 1% signing. Over time these targets increase to 80% subtitling, 10% audio description and 5% signing. The BBC channels are obliged to meet an annual target of 100% subtitles, 10% audio description and 5% signing (Ofcom 2015a, 2). Despite the greater attention paid to the accessibility of information in the United Kingdom, in the year 2016, there was still a disproportionately high proportion of individuals with disabilities that never use the internet and those who do continue to face barriers. For example, the websites of the public sector are still partly inaccessible (Equality and Human Rights Commission et al. 2017, 21). Besides the National States, the European Union (EU) sets the political framework. The 2010 EU Audiovisual Media Services Directive stipulates that [t]he right of persons with disabilities and of the elderly to participate and be integrated in the social and cultural life of the Union is inextricably linked to the provision of accessible audiovisual media services. The means to achieve accessibility should include, but need not be limited to, sign language, subtitling, audio-description and easily understandable menu navigation. European Union (2010, 95/6) In November 2018, the European Commission adopted the revised version of the Audiovisual Media Services Directive that bounds the private economy legally to more accessibility. The member states have to implement these regulations into national law until the end of 2020. This directive ought to be seen in the context of two other EU guidelines: the EU Accessibility Act, which focuses on private companies, and the European guideline 2016/2102, which relates to the accessibility of websites and mobile devices of public bodies. In Germany, these guidelines were incorporated into national law by the year 2018, but websites of broadcasters were explicitly excluded. In Germany the Web Content Accessibility Guidelines 2.0 (WCAG 2.0) as international standard for web accessibility is implemented into

Media Use by Individuals with Disabilities 159 national law via an annex of the ‘Equal Opportunities for People with Disabilities Act’ (Behindertengleichstellungsgesetz 2006). But this law is just binding for federal authorities. In the United Kingdom the WCAG 2.0 is the standard for public sector bodies (compliance level AA). By the EU Directive on the accessibility of public sector websites and mobile applications, all homepages and apps have to become accessible at least by June 2021. Until yet there was no monitoring or sanctioning in Germany; this changed with the EU Directive and may promote the pace of the process to make more websites and mobile applications accessible.

Current International Research Findings When considering the current state of research on media usage by individuals with disabilities, it is first noted that there are various research interests and research approaches. It is necessary to consider if the focus is set on the supply side or the demand side and who has funded the study (e.g. the EU). While recognizing the other international research results (e.g. Alper and Goggin 2017, Ellcessor 2016, Ellis and Kent 2015), the focus shall be consciously set on Germany and the United Kingdom and if relevant, on the EU. The last European-wide study was carried out in 2013 with a focus on e-accessibility in the World Wide Web, telecommunications (telecoms) and television (Cederbom et al. 2013, 7). Regarding the accessibility of television content, the authors stressed, on the one hand, the progress made across the member states in the extent of accessibility due to the EU’s audio-visual media services directive, and on the other, that there remains much room for improvement of television accessibility across Europe as a whole as well as significant variation across member states (Kubitschke et al. 2013, 9). In 2016, the European Broadcasting Union presented comparative data on accessible media offered by 36 channels in 24 countries. The study reveals that broadcasters tend to focus on providing subtitling, audio subtitling, audio description and signed programmes (European Broadcasting Union 2016). In Germany, public broadcasters fund the most relevant representative studies on media usage. None of these large scale studies about media use amongst the German population contain any specific data about media usage by individuals with disabilities. To date, the largest survey on media usage by persons with disabilities in Germany that directly asked about users’ perspectives (Berger et al. 2010) dates from the year 2010 and deals with the usage of Web 2.0 offerings (n=671). The results show the heterogeneity of individuals with disabilities. The type of impairment affects to some extent which information and communication needs are satisfied through various internet applications. The findings of Berger et al. reveal that usage intensity, the way media are used and the motive for usage largely depend on the type

160 Ingo Bosse and Annegret Haage of impairment and living conditions. The study by Berger et al. indicates that individuals with intellectual disabilities are especially threatened with or affected by digital exclusion (Berger et al. 2010). Data from a smaller qualitative German study about internet use by individuals with intellectual disabilities confirm these results: the risks of exclusion are most prevalent when financial resources are lacking or the living environment is characterized by social care (Freese and Mayerle 2015, 7). The British study ‘Disabled consumers’ use of communications services: A consumer experience report’ (Ofcom 2015) uses a methodological approach that includes both individuals with and without disabilities. Ofcom publishes a ‘quantitative analysis comparing household ownership/access to and use of communications services among consumers with different types of impairment or disability’ (Ofcom 2015, 4). The study worked with data from the monthly British Population Survey 2014. The survey reached 4,004 adults over the age of 15 via face-to-face interviews. Individuals with hearing, visual, mobility, learning or multiple impairments were part of the national sample. The methodology allows for comparison between disabled and non-disabled individuals as well as across the different groups of individuals with disabilities. A main difference is that the British study is representative of individuals who live in a private household. For the German MMB16 study, users who live in residential facilities were asked as well.

Media Use by Individuals with Disabilities in Germany The German MMB16 study is oriented on the basic criteria for a lifestyle of good quality as designated by Article 3 of the UN-CRPD (Wacker 2016). These criteria refer to (1) the access of individuals with disabilities to relevant infrastructures, communication and information; (2) selfdetermined and autonomous design of media use; and (3) the freedom to make decisions themselves. The study, financed by the media authorities and the German welfare organization ‘Aktion Mensch,’ concentrates on the mass media formats of television, radio, daily newspapers and the internet, with special focus on audio-visual media. In so doing, entry as well as accessibility barriers were of special interest, along with an evaluation of the quality of already existing barrier-free television services such as subtitles and audio description. Barriers may be located in the condition of media services themselves, such as in missing subtitles or audio description, or as a result of factors relating to social context (e.g. the form of housing or the potentially limited opportunities to make independent decisions about media use). Therefore, contextual factors, which refer to the specific living conditions and to the media available, have been considered in this study (Adrian et al. 2017). Due to this background the international classification of functioning, disability and health (ICF) of the World Health Organization (WHO

Media Use by Individuals with Disabilities 161 2001) forms an essential point for the study. Here, the understanding is that disability is dependent on situations involving the interaction of bodily functions and structures within environmental and personal factors. Thus, possibilities for activities and participation are always situation dependent (WHO 2001). According to the WHO, a disability is both relational and relative. An impairment has different effects depending on the situation. ‘Media cultures take for granted an able bodied user position. (…) This can interfere in all kind of life activities, from online shopping to social networking. (…) Technological barriers function to exclude certain bodies from full participation’ (Ellcessor 2016, 118, 130). Although the ICF is widely recognized, the definition is not in use for official statistics about disabled individuals in Germany. The most commonly used statistic of severely disabled individuals ‘Schwerbehindertenstatistik’ includes just a part of the target group (2015: 7.6 million individuals, Statistisches Bundesamt, 2016). In Germany there is no legal obligation for official recognition of a disability. It appears that certain individuals are systematically discounted due to these regulations (Institut für Höhere Studien 2012, Schröttle und Hornberg 2011).

Research Design A mixed methods approach was chosen that utilizes the following qualitative and quantitative formats: 1

2

Expert interviews: Interviews were conducted when developing the questionnaire, focusing on the different types of impairments and the respective requirements for the design of survey methods and the accessibility of media. Sixteen experts, with and without impairments, were interviewed. We defined experts as persons with special knowledge related to their professions (e.g. as scientists). Due to the fact that the relation to profession might be problematic (e.g. NGOs) if the disposability of knowledge has not been reflected we interviewed 16 experts, with and without impairments, who have special technical knowledge, process-related knowledge and interpretativeevaluative knowledge (Littig 2011). The experts were scientists with and without disabilities and activists of organizations of persons with disabilities: expert interviews were conducted with 13 experts for the four subgroups and three experts for the media usage of individuals with impairments in general. Quantitative surveys: The disproportional quota sample (n=610) consists of individuals from the age of 14 living across Germany and use at least one medium occasionally. We differentiated between four subgroups: physical-motor impairments, hearing impairments, visual impairments and learning difficulties. Within each subgroup, a sample was created showing a variance in the context factors

162 Ingo Bosse and Annegret Haage relevant for media use (Haage and Bosse 2017, 421). For the quantitative survey, a disproportionate representation within certain characteristics including age, gender, formal education, region, kind of impairment, occurrence of the impairment and living conditions, employment situation was chosen to have a balanced sample. Other factors differed depending on the subgroup: •

• •

•

visual impairment (n=154): quota for blindness and partially sighted, time of occurrence of the impairment (birth, childhood/ youth, adulthood) hearing impairment (n=161): quota for hard of hearing, deafened and deaf physical and motor impairments (n=148): quota for time of occurrence of the impairment (see earlier point), type of residence (private households or residential homes), variance regarding employment (regular labour market, special labour market such as sheltered workshops and economically inactive) learning difficulties (n=147): quota for reading skills, type of residence (see earlier point) and variance regarding employment (see earlier point)

The participants were recruited by the interviewers based on the agreed quotas. The study aims to represent as realistic a regional distribution as possible with regard to the German federal states with a varying media landscape. The variations within age, gender and formal education were met for all four subgroups, as well as the specific quotas. The sample is not representative of the population with disabilities in Germany. The disproportional composition of the sample with quotas for subgroups and certain characteristics within the groups ensure that all relevant groups of impairment are represented in the sample to make conclusions about their media usage and barriers and avoid a bias within the data collection right from the start. Each computer-assisted personal interview was conducted face-to-face by 101 previously specially trained interviewers of the research institute IPSOS in June and July 2016 and if needed, with the use of additional tools like videos in sign language or an easy-to-read format, according to respective needs. Topics covered by the questionnaire: • • • •

Subjective perception of impairment Media use in general TV use in particular Specific TV-related barriers and support

Media Use by Individuals with Disabilities 163 The majority of questions were derived from the study ‘Mass Communication’ by the German public broadcasters ARD/ZDF (Engel and Breunig 2015) to allow comparisons with the media usage of the general population. 3

Group discussions: Four focus group discussions dealt with barriers and accessibility related to German television. The group discussions focused aspects of accessibility that are difficult to grasp with a standardized survey. In addition, the aim was to make sure that all relevant aspects of accessibility in television were addressed. Therefore the aspects of accessible content were discussed, not the technical aspects of accessible TV. Because there are no special accessibility features for the other subgroups, the group discussions were solely conducted with participants with sensual impairments: • blind and visually impaired individuals • hard of hearing, deaf or deafened individuals, who communicate in spoken language (with speech-to-text interpretation) • deaf or deafened individuals, who communicate in sign language. The discussion was moderated by a deaf scientist. • individuals with hearing and visual impairments, including deafblind individuals. The discussion was conducted in spoken language with speech-to-text interpretation.

Results The following results offer a descriptive presentation of mass media use by individuals with disabilities, their needs as well as their gained gratifications, and the barriers they are confronted with. The numbers are shown as breakdowns by the four subgroups.

Media Use in General The results show that television is the most commonly used daily media. In all subgroups the proportion of individuals who watch television at least once per week is significantly larger in comparison with the general population, with exception of younger individuals with visual and with hearing impairments. Only 4% of the total sample indicated that they never watch television and these participants were usually blind and/ or deaf. With regard to internet usage there are age-related differences. That is, internet usage and the age of the interviewee tend to be closely connected; however, usage is also linked to the type of impairment. A greater number of individuals with visual, hearing or motor impairments use the internet than do individuals with intellectual impairments. The internet is mainly used to conduct online searches and to exchange views and discussion with others in online communities. This pattern

82 88 60 71

65 90 45 77

81 94 57 52

91 82 42 80

14–49 (n = 66)

Subgroup ‘Seeing’

92 88 52 48

50+ (n = 88) 18 86 71 95

14–49 (n = 79)

Subgroup ‘Hearing’

a Data from the longitudinal study of mass communication (Engel and Breunig 2015, 319)

Radio TV Newspapers Internet

14–49 (n = 294)

14+ (n = 4300)

50+ (n = 316)

Total Sample

MC 2015a

Table 9.1 Personal use of media at least once a week (data in %)

65 94 90 61

50+ (n = 82) 85 99 40 81

14–49 (n = 73)

Subgroup ‘Moving’

88 97 67 52

50+ (n = 75)

74 93 24 51

14–49 (n = 76)

79 99 15 45

50+ (n = 71)

Subgroup ‘Learning’

164 Ingo Bosse and Annegret Haage

Media Use by Individuals with Disabilities 165 of usage applies mostly to the age group 14–49 (69%). Notably, 53% of respondents over 50 years of age also use online communities, instant messaging or email for exchanging views and discussion with others. Another remarkable result concerning media ownership is the low number of smartphone owners. In Germany, 61% of respondents aged 14–49 and 30% of those over 50 have a smartphone in their household. Individuals with learning difficulties are the least likely to have access to a smartphone. Respondents aged 14–49 and who have an impairment tend to own a smartphone for internet usage, whereas those aged 50 and older tend to use a stationary computer rather than a smartphone. Striking is the significant lower share of individuals with visual impairments and learning difficulties who read newspapers. The vast majority of German newspapers don’t have accessible content in the internet for blind people and no information in easy-to-read. In Germany newspapers play an important role especially in providing information at local level (Krupp 2016, 96).

Social Context of the Respondents As previously stated, we assumed that the social context, especially the employment status and living conditions, in addition to the impairment, influence media use. The possibility to use devices differs between the subgroups and depends on the living conditions. These findings are especially relevant for individuals with physical impairments and for individuals with learning difficulties. Within the other subgroups there are hardly no respondents that live in residential homes. Radio, computer and mobile devices are much more common in private households. The biggest difference can be stated for smartphones and tablets. The findings indicate that access to media and communication devices is lower among people with impairments in residential homes than Table 9.2 Media equipment of individuals with disabilities depending on living conditions (in %)

TV Radio Computer/laptop Smartphone Tablet

SG ‘Physical impairments’

SG ‘Learning’

Private household

Institution

Private household

Institution

97 89 68 49 22

100 86 67 37 6

95 80 51 41 19

98 74 46 30 3

Question: Which kind of media are available in your household? Assessment by the interviewer: Respondent lives in…

166 Ingo Bosse and Annegret Haage among the general population in Germany. There are fewer devices with access to the internet. The relationship between media ownership and type of residence is most significant for individuals with learning difficulties. Only half have a desktop computer in the household, while one third own a smartphone and one in ten own a tablet. Individuals with learning difficulties living in private households are slightly more likely to have access to digital media (Haage and Bosse 2017, 427). Welfare organizations should pay closer attention to digital participation. The data show a third social factor that has a strong influence on the media use: the age of the interviewees. Age correlates with access to mobile devices. Almost double the number of respondents with impairments who were younger than 50 have access to smartphones than respondents aged 50+: 27% of the younger respondents own tablets in the household and 9% of the older respondents. Age also influences media usage, and this finding is supported by more general media usage studies.1 Due to social context factors such as age, low income or unfavourable living conditions users often have little or no access to the latest technology.

Comparing German and British Data: Media Use in General For the comparison of the German results with that of the British results of the Ofcom study the abbreviation MMB16 is used for our German study. Ofcom found that in the United Kingdom, the usage of communication devices and services in the home was generally lower among consumers with a disability than among those without (Ofcom 2015, 9). Exceptions were landline telephones and free-to-air TV. The largest gap between disabled and non-disabled consumers appears for internet access (65%–88%, respectively) (Ofcom 2015, 9). The German survey shows that television is the most commonly used daily media for individuals with disabilities. The proportion of individuals with disabilities who watch TV at least once a week is significantly larger than the general population. Only 4% of the total sample indicated that they never watch TV. These people were usually blind and/or deaf. Internet usage and the age of the interviewee tend to be closely connected; however, usage is also linked to type of impairment. More individuals with visual, hearing or motor impairments use the internet than do individuals with intellectual impairments (Bosse and Hasebrink 2016, 45f.). The Ofcom study states that, ‘Disabled consumers were more likely than non-disabled consumers to have access to a free-to-air TV service, and less likely to have pay TV in their homes’ (Ofcom 2015, 11). These data are not easily comparable with the German results as the German study does not distinguish between pay TV and free-to-air TV due to the low relevance of pay TV in Germany.

Media Use by Individuals with Disabilities 167 In the United Kingdom, Ofcom found that ‘The Internet was the only service where levels of personal use across each disability group were similar to access levels, suggesting that all those with access personally used the Internet’ (Ofcom 2015, 45). Individuals with intellectual impairments were the least likely to indicate use of the internet. In accordance with the German results, the British results show that communication and information are the most popular reasons why both disabled and non-disabled consumers use the internet (Ofcom 2015, 10). Remarkable for both countries is the low number of smartphone owners. In the United Kingdom, the number of people who have access to a smartphone in their home has increased since 2012, but disabled consumers overall continued to have lower levels of access to these devices than did non-disabled consumers (41% and 66%, respectively). Reflecting their younger profile, consumers with a learning disability were the most likely to have access to a smartphone (57%), albeit still significantly lower than that of non-disabled consumers (Ofcom 2015, 10). Both studies show that individuals with disabilities are still less equipped for digital media relative to the overall population.

Comparison of Limitations in Access and Usage for the Subgroups The results show that there are additional specific accessibility and usability restrictions in the use of mass media by impaired individuals. Because the concrete requirements for accessibility and support are related to the specific needs of the subgroups, they are presented by subgroups with a focus on television and the internet. Seeing When watching TV, an obstacle for the German ‘Seeing’ subgroup is the absence of audio description and independent control of the devices. Needs tend to differ depending on the severity of the eyesight damage. Most individuals in this group would benefit from enhanced audio description and better speech intelligibility. A priority for this subgroup is to increase the number of options that offer audio description. For 25% of the group, independently controlling the TV is a problem. In comparison with the other subgroups, this is the highest figure. There is a strong desire for more time to enter multi-digit channel numbers as well as voice output for the menu navigation (Bosse and Hasebrink 2016, 73f.). An increasing problem is non-verbal information in videos, like stock prices on belt conveyors. Other forms of media present challenges in terms of access. For example, 88 participants of this subgroup stated that they never read the newspaper. The experts surveyed think that one reason for this might be that digital daily newspaper subscriptions are often not

168 Ingo Bosse and Annegret Haage accessible and tape libraries mainly focus on monthly or weekly news. The percentage of those who never use the internet is also high (30%). This percentage is even higher amongst blind respondents (43%). Internet usage is strongly correlated with the occurrence of an impairment. Half of those with an acquired impairment remain offline. However, only 10% of those who are blind or have a visual impairment since birth are offline (Bosse and Hasebrink 2016). Due to the multi-modality of the internet, the barriers vary widely, and in order to be able to cope, a technical understanding is needed. Key barriers tend to be screen readers, which are often not up-to-date with current technical development and the growing importance of moving images (Bosse and Hasebrink 2016, 65). The participants of the group discussion with visual impairments appreciated the standards for audio description, developed by public service broadcasters together with self-advocacy organizations. Speech intelligibility was also major issue. It is said that protagonists who mumble and speak unclearly are the main problem. With regard to internet usage, the German and British results are quite similar. In the United Kingdom, the older age profile of visually impaired people (33% are 65 or older) explains some of the difference in levels of access. This also partly explains the lower levels of access to computing devices (PCs/laptops and tablets) among this subgroup and the stated impact of their disability in limiting use of such devices (Ofcom 2015, 95). In Germany, people of a younger age (14–49) tend to use the internet more often. The large majority (80%) of the German participants in this age group go online several times a week, whereas just 48% of those participants over the age of 50 do the same. For both Germany and the United Kingdom, we can say that visually impaired individuals are significantly less likely than non-disabled people to have smartphone access. In contrast to the German results, the Ofcom study does not contain splits by visual impairment type (Ofcom 2015, 95). The British visual impaired respondents face less barriers than the German respondents using TV: 14% of the British sample, but nearly one third of the German sample said they feel their disability limits the use of TV (Bosse and Hasebrink 2016, 73, Ofcom 2015, 51). Hearing The most extensively used media for the ‘hearing’ subgroup in Germany is ranked as follows, from greatest to least use: TV; newspaper; internet; radio. For this group, accessible TV includes speech intelligibility, improved sound quality, subtitles and sign language, which is indispensable. Needs differ depending on the severity of the hearing impairment. While those who are not able to hear sound whatsoever depend on

Media Use by Individuals with Disabilities 169 subtitles and/or sign language, individuals who are hard of hearing use a combination of different strategies. In the German study, the subgroup ‘hearing’ uses the internet most. Ninety-two per cent of deaf respondents and 90% of deafened respondents stated that they use the internet daily/ several times a week. In comparison, only 59% of respondents who are hard of hearing stated that they use the internet as often. The great importance of the information and communication function of the internet as well as the range of specialized offerings was stressed by experts as the reason (Bosse and Hasebrink 2016). During the group discussion in sign language, the impact of a lack of freedom to choose was criticized: ‘If someone likes to watch TV while ironing, one can choose. But I get what is just offered, and cannot choose. This is bothering me and it is not accessible’ (group discussion in sign language). Through the group discussion, it became obvious that criticism regarding the quality of subtitles is common, especially for live shows. Participation is not limited to information, education or science; the participants of the group discussion demand equal access also to entertainment programmes and advertising. On television I‘m still missing subtitles of TV shows like “wife swop”, “farmer wants a wife” and other crazy shows. We can‘t watch this kind of shows. My parents for example are often asking: Did you see that, she is absolutely nuts and I can‘t keep up, and can‘t have a say (Group discussion in sign language) The results of the three group discussion with participants of different kinds of hearing impairments show overall a strong desire for equal participation in linear television, meaning it is insufficient to offer media that is accessible only through the internet. Poor sound quality and difficulties related to speech comprehension and device operation are problems experienced by all subgroups. It would be hugely beneficial if background noise could be lowered or made more distinct from speech. Of those individuals who have problems watching a television programme, most want better speech intelligibility, followed by more easily understandable language. Overall, the possibility to easily discover accessible services is of utmost importance for the participants of all group discussions. It is not easy for participants to obtain an overview of which services are accessible and in which ways. The German data on TV usage among hearing-impaired individuals are not easily comparable with the UK data, as pay TV reaches far more consumers in Great Britain. It is still interesting to have a brief look at the British situation.

170 Ingo Bosse and Annegret Haage Consumers with hearing impairments were more likely than nondisabled consumers to have a free-to-air TV service, and less likely to have pay TV. Around half (48%) had access to a pay TV service in the home, lower than the proportion of non-disabled consumers (55%). In contrast, access to a free-to-air TV service was higher for this group (61%) than for non-disabled consumers (50%), with levels decreasing for non-disabled consumers since 2012 (Ofcom 2015, 73) Comparing the data on internet usage and within the Ofcom studies 2012 and 2015 shows that there has been no change in internet access for hearing-impaired consumers since 2012. For the average British individual, it rose by 5%. For hearing-impaired consumers, 69% had access to the internet at home or elsewhere, which is lower than the proportion of non-disabled consumers (88%) (Ofcom 2015, 73). The Ofcom study and the MMB16 study both make no mention of any specific barriers for this subgroup. However, the Ofcom study suggests that the growing importance of moving images creates a barrier if they do not have subtitles. Much more German respondents have problems watching TV because of barriers compared with British ones (49% MMB16; 11% Ofcom Study 2015). Moving The German research shows that in this subgroup, barriers that arise while watching TV are often related to difficulties associated with operating the device. Nearly two thirds of the interviewees do not usually need help watching TV. Twenty-four per cent said that they need help operating the TV or for the description of content. Of those respondents who do have problems watching a TV programme, most want better speech intelligibility, followed by more easily understandable language. Every sixth individual within this subgroup experiences difficulties operating a TV at least some of the time. The vast majority think that tangible and enlarged keys on the remote control and more time to enter a multi-digit channel number would be helpful. Roughly one half of the participants find an application and voice output helpful for operating a TV (Bosse and Hasebrink 2016, 96f). The German data regarding TV usage of mobility impaired individuals are not easily comparable with the situation in the United Kingdom because, as noted earlier, pay TV reaches far more consumers in Great Britain. The British results show that: Mobility impaired consumers were more likely than non-disabled consumers to have a free-to-air TV service, and less likely to have a pay TV service. Around two-fifths (43%) had access to a pay TV

Media Use by Individuals with Disabilities 171 (satellite/cable) service in the home, lower than for non-disabled consumers (55%). In contrast, access to a free-to-air (Freeview/ Freesat) TV service was higher for this group (60%) than for non-disabled consumers (50%), with levels decreasing for non-disabled consumers since 2012 (Ofcom 2015, 53) Sixty per cent of the British and 66% of the German interviewees with mobility impairment regularly use the internet (Ofcom 2015, 52). When compared with the general population of both countries, the internet access rate is lower. While in Germany 71% of the average population use the internet regularly (Engel and Breunig 2015, 319), in the United Kingdom 88% use it regularly (Ofcom 2015, 52). Learning Nearly all German respondents from this subgroup regularly watch TV (96% said they watch TV at least several times a week). All other media are used less regularly than it is in the other subgroups and when compared to the general population. Only a fifth regularly read the newspaper (at least two to three times a week) and less than a half use the internet on a regular basis. In no other subgroup is the freedom of choice more limited. One third state that they cannot always choose what they watch or when they watch TV. The data change depending on housing type, literacy and age. Interviewees with intellectual impairments primarily use easy speech/read for support (41%). In addition, they make use of personal support for the description of contents or to operate devices. Those who live in a facility use easy to read more often (29% in private households and 49% in facilities). This may be because facilities draw their attention to special offerings in easy to read. The German experts surveyed argue that the target groups are not often aware of offerings in easy to read and that there could be a lack of information or self-motivation. Interviewees who can read stated that they use more easy to read than others who lack reading literacy (8% point difference). The Ofcom study highlights some of the similarities and differences between German and British media consumers with intellectual impairments. In the United Kingdom, individuals with intellectual impairments access the internet 15% less than those without an impairment (73% versus 88%). UK disabled consumer access to connected devices in general is lower than in Germany, but there were similar levels of access when the device is a tablet, which could be explained by the stated impact of the disability. Three out of ten British consumers with intellectual impairments said their disability limited their use of communication services and devices, with the most difficulties being encountered when using a tablet (Ofcom 2015, 135).

172 Ingo Bosse and Annegret Haage The British and German data both show that respondents tend to have more difficulty accessing mobile, web-enabled devices for various reasons. However, what stands out is that British respondents of the subgroup ‘learning’ have better access to mobile, web-enabled devices than do the German respondents of the same subgroup. They are also less concerned by exclusion, which may result from the method that was used when determining their subgroup, as respondents were asked whether they consider themselves to have learning difficulties. Another explanation could be that, for the United Kingdom, only people living in private households were interviewed. However, even if in the German study only people living in private households with intellectual impairments were considered (n=50), the data would still differ from the British Data (Ofcom 2015).

Discussion and Conclusion Due to the fact that we could present with the MMB16 study for the first time, comprehensive data of the mass media usage and related accessibility restriction for Germany, it is possible to compare and discuss these results with similar studies such as the British Ofcom (2015) research. Regarding the division of the target groups and the classification of media types, our German study is comparable to the British one. Since the internet and the television domains are very complex and dynamic fields, the national developments are not completely comparable. Both studies reveal that barriers are not only located in the media but also influenced by the social context: for individuals with disabilities, access to media is often a barrier, especially if there is a connection between impairment and the user’s economic situation. Several studies referring to the digital disability divide confirm that socioeconomic barriers prevent people with disabilities from purchasing, accessing and using (Dobransky and Hargittai 2016, Macdonald and Clayton 2013). The main explanation for the differences in the accessibility and usability of mass media in countries like Germany and the United Kingdom results from the different political frameworks and the different level of awareness of the broadcasting stations about accessibility and usability of mass media and diversity in mass media. It can be assumed that the political framework and the level of awareness are closely linked to each other. The UK is committed to providing access to broadcasting services for disabled people and to ensuring that the services offered are of a consistently high standard. A disproportionate system currently exists in the UK, so that the accessibility rate increases Ellis and Kent (2015, 4)

Media Use by Individuals with Disabilities 173 Whereas in countries like the United Kingdom or the United States there are binding obligations for both public and private broadcasters to increase the accessibility rate in a fixed staged model, in Germany there are no such requirements. The German way is laborious: one counts on voluntary engagement, inter alia, following pressure from selfadvocacy associations. Most progress is being made through the inclusion of individuals with disabilities into the financing of public service broadcasters – without setting fixed quotas. Since then, the percentage of subtitling and audio description amongst public service broadcasters has sharply increased. The subtitling quota of the public broadcaster ARD increased from 34% in 2009 to 99% in 2018 per day, and the quota of audio-description from 19% in 2012 to 54% during prime time (ARD 2018). The second public broadcaster ZDF has a quota of 100% for the prime time since 2013. Several live-programmes are offered with German sign language since 2018. The quota for audio description was 11.9% for the whole programme in 2017 (ZDF 2017). The news is broadcast once per day with sign language by both broadcasters and there is one monthly signed magazine offered by the ARD. Recently, the number of online television programmes with sign language, especially for children, has increased, but there are currently less than ten (Bosse 2016). Private broadcasting companies like the RTL Group have extended their accessible services. Since 2018, the group offers ten hours per day with captions, with at least four during prime time (Mediengruppe RTL 2017). Programmes with audio description or sign language, however, remain an exception. Our German study MMB16 confirms the ‘hierarchy of content’ that prioritize information for people with disabilities, ‘while “entertainment” is often framed as a luxury’ and ‘reserved for the alreadyadvantaged’ (Ellcessor 2016, 129, 132). Even if the data concerning the use of media by disabled individuals have made clear that linear television is still of great importance, we can expect that television via the internet will gradually gain importance within this population group. The fact that the younger respondents have a significantly more intensive use of the internet than older respondents supports this conclusion. There is an urgent need to get to know more about the media use of children with disabilities. Due to financial and methodological reasons, respondents younger than 14 were not part of the German sample. Also from an international perspective, there is little attention ‘when it comes to children with disabilities and their use of media for digital and cultural citizenship’ (Alper and Goggin 2017, 2). In countries such as the United Kingdom and Australia, television content via the internet is already clearly more developed (Ellis and Kent 2015). Thus, online versus broadcast television accessibility will be

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a future field of research because the respondents of the German MMB16 study stated a clear wish for accessibility features for linear TV not just via media libraries. Therefore it is of interest how these offers will be accepted. The growing media convergence is mainly related to the internet and television. Since the development of hybrid television, both media cannot be clearly separated. Ongoing technical developments can lead to more solutions that support accessibility, but technology can create new disabilities as well, especially if they are developed from an able-bodied position (Ellcessor 2016, 124). Solutions for individuals with learning difficulties often offer contents that don’t stay at the original, e.g. via a translation into easy to read. The decision for the content doesn’t remain at the user. The project ‘easy reading’ by the EU develops a solution for websites. With a browser plug-in the user can decide by him/herself which kind of alteration is needed and will be possible to switch back to the original content (www.easyreading.eu). The question ‘Who is creating content?’ is one that is still less discussed so far. The digitalization extends the possibilities in a participatory culture or ‘disability culture online’ as Dobransky/Hargittai put it (Dobransky and Hargittai 2016, 20). Initiatives like the German ‘leidmedien.de’ show the potential of the internet to foster engaged, active digital citizens (Ellcessor 2016, 159) according to the motto ‘nothing about us, without us.’ One demand in the current discussion about inclusive media education in Germany is to foster the diversity in the editorial offices (Bosse et al. 2018) to change relations of power and to create content not just from an able-bodied position. In accordance with the UN-CRPD (UN 2006), awareness should be raised that promotes knowledge around the cross-sectoral issue of inclusive media. In 2018 awareness of the need to design inclusive and accessible media increased in countries like the United Kingdom and Germany as the presented studies show here. But there is still a need to increase the amount of empirical data about the different aspects that have an impact on participation. Internationally comparative data are a promising future area. A broader understanding can be achieved through an interdisciplinary perspective, as is underlying the ‘Routledge research in disability and media studies series’: Disability upends universalism, requiring new, robust means of studying a mediated world in which media’s access, use, and meaning occur in diverse context and infinite variations. (Ellcessor 2016, 155) If the legal obligations for public broadcasters and especially for the private media economy are not changed, Germany will most likely be placed with countries that lack ‘binding obligations for private entities,

Media Use by Individuals with Disabilities 175 particularly private media and websites’ (Committee on the Rights of Persons with Disabilities 2015, 4). Hence, it can be expected that there will remain barriers located in the condition of media services themselves as well as in social context factors, although there never existed so many possibilities to overcome them.

Note 1 ARD/ZDF long-term study of mass communication (Engel 2015), ARDZDF Online Study (Eimeren and Frees 2013), studies of children’s and adolescents’ media usage (KIM and JIM studies) (Medienpädagogischer Forschungsverbund Südwest 2016, 2017).

References Adrian, Sebastian, Hölig, Sascha, Hasebrink, Uwe, Bosse, Ingo, and Haage, Anne. 2017. Mediennutzung von Menschen mit Beeinträchtigungen. Medienbezogene Handlungen, Barrieren und Erwartungen einer heterogenen Zielgruppe. In: Media Perspektiven, Heft 3, 145–156. Alper, Meryl and Goggin, Gerard. 2017. Digital technology and rights in the lives of children with disabilities. In: New Media & Society. Issue 5, 1–15. ARD. 2018, Barrierefreie Angebote der ARD. Teilhabe für Menschen mit Behinderung am Programmangebot. www.ard.de/home/die-ard/fakten/ Barrierefreie_ Angebote_der_ARD/4036078/index.html [Accessed 18 December 2018]. Berger, Andrea, Caspers, Tomas, Croll, Jutta, Hofmann, Jörg, Kubicek, Herbert, Peter, Ulrike, Diana Ruth-Janneck, and Trump, Thilo. 2010. Web 2.0/ Barrierefrei: Eine Studie zur Nutzung von Web 2.0 Anwendungen durch Menschen mit Behinderung. Bonn. www.digitale-chancen.de/transfer/ downloads/MD967.pdf [Accessed 18 May 2018]. Bosse, Ingo. 2016. Teilhabe in einer digitalen Gesellschaft – Wie Medien Inklusionsprozesse befördern können. In: Bundeszentrale für politische Bildung. Onlinedossier Medienpolitik, www.bpb.de/gesellschaft/medien/ medienpolitik/172759/medien-und-inklusion [Accessed 13 May 2018]. Bosse, Ingo and Hasebrink, Uwe. 2016. Mediennutzung von Menschen mit Behinderungen. Forschungsbericht. Hrsg. von Aktion Mensch and Die Medienanstalten. www.kme.tu-dortmund.de/cms/de/Aktuelles/aeltere-Meldungen/ Studie-Mediennutzung-von-Menschen-mit-Behinderung-_ M M B16 _ / Studie-Mediennutzung_Langfassung_final.pdf [Accessed 29 January 2019]. Bosse, Ingo, Haage, Anne, Kamin, Anna-Maria, and Schluchter, Jan-René. 2018. Medienbildung für alle: Medienbildung inklusiv gestalten. Positionspapier der GMK Fachgruppe inklusive Medienbildung. www.gmk-net. de/2018/09/20/medienbildung-fuer-alle-medienbildung-inklusiv-gestalten/ [Accessed 27 October 2018]. Cederbom, Andreas; Cullen, Kevin; Dolphin, Ciaran; Kubitschke, Lutz and Laurin, Susanna. 2013. Study on Assessing and Promoting e-Accessibility. Final report. Luxembourg: Publications Office of the European Union. Dobransky, Kerry and Hargittai, Eszter. 2016. Unrealized potential. Exploring the digital disability divide. Poetics 58, 18–28.

176 Ingo Bosse and Annegret Haage Eimeren, Birgt van and Frees, Beate. 2013. Rasanter Anstieg des InternetkonsumsOnliner fast drei Stunden täglich im Netz. Media-Perspektiven 7–8, 358–371. www.ard-zdf-onlinestudie.de/fileadmin/Onlinestudie/PDF/Eimeren_Frees.pdf [Accessed 13 May 2018]. Ellcessor, Elizabeth. 2016. Restricted Access. Media, Disability, and the Politics of Participation. New York: NYU Press. Ellis, Katie and Kent, Mike. 2015. Accessible television: The new frontier in disability media studies brings together industry innovation, government legislation and online activism. First Monday 20(9), 7 September 2015. http:// journals.uic.edu/ojs/index.php/fm/rt/printerFriendly/6170/4905 [Accessed 13 May 2018]. Engel, Bernhard. 2015. Massenkommunikation 2015 – Vorüberlegungen und Methode. Media-Perspektiven 7–8, 342–351. www.ard-werbung.de/mediaperspektiven/publikationen/fachzeitschrift/2015/artikel/massenkommunikation2015-vorueberlegungen-und-methode/ [Accessed 13 May 2018]. Engel, Bernhard and Breuning, Christian. 2015. Massenkommunikation 2015: Mediennutzung im Intermediavergleich. Ergebnisse der ARD/ZDFLangzeitstudie. Media Perspektiven 7–8, 310–322. www.ard-werbung.de/ fileadmin/user_upload/media-perspektiven/pdf/2015/07082015_Engel_ Breunig.pdf pdf [Accessed 13 May 2018]. Equality and Human Rights Commission, Equality Commission for Northern Ireland, Northern Ireland Human Rights Commission, Scottish Human Rights Commission. 2017. Disability rights in the UK. UK Independent Mechanism. Submission to inform the CRPD. List of Issues on the UK. www.equalityhumanrights.com/sites/default/files/united_kingdom_main_ submission_to_crpd_uk_loi_-_ukim13march.pdf [Accessed 13 May 2018]. European Broadcasting Union (Ed.), Rossignol-Farjon, A., and Cimino, F. 2016. Access Services Pan European Survey 2016. Geneva: European Broadcasting Union. www.ebu.ch/publications/access-services-pan-european-survey-2016 [Accessed 13 May 2018]. European Union 2010. Audiovisual Media Services Directive. https://eur-lex. europa.eu / legal- content / EN/ T X T/ PDF/?uri= CELE X:32010L0 013& from=EN [Accessed 18 May 2018]. Freese, Benjamin and Mayerle, Michael. 2015. Digitale Teilhabe als Teil einer barrierefreien (E-)Partizipationskultur am Beispiel des PIKSL-Labors. In Barrierefreie Partizipation. Entwicklungen, Herausforderungen und Lösungsansätze auf dem Weg zu einer neuen Kultur der Beteiligung, edited by Miriam Düber, Albrecht Rohrmann and Marcus Windisch. Weinheim: Beltz Juventa, 382–395. Haage, Anne and Bosse, Ingo. 2017. Media use of persons with disabilities. In: Antona, Margherita and Constantine Stephanidis (Eds.): Universal Access in Human-Computer Interaction. Human and Technological Environments, 11th International Conference, UAHCI 2017, Held as Part of HCI International 2017, Vancouver, BC, Canada, July 9–14, 2017, Proceedings, Part III, 419–435. Holsten, Cornelia and Hein, Dörte. 2017. Barrierefreiheit im privaten Fernsehen. Die Ergebnisse des vierten Monitorings. In: die medienanstalten (Hg.): Contentbericht 2016. Forschung – Fakten – Trends. Berlin: Vistas, 173–181.

Media Use by Individuals with Disabilities 177 Institut für Höhere Studien. 2012. Beeinträchtigt studieren: Datenerhebung zur Situation Studierender mit Behinderung und chronischer Krankheit 2011. (Deutsches Studentenwerk, Hrsg.). Berlin: Bundesministerium für Bildung und Forschung. Krupp, Manfred. 2016. Massenkommunikation IX. Eine Langzeitstudie zur Mediennutzung und Medienbewertung 1964–2015. Schriftenreihe MediaPerspektiven, volume 22 Nomos: Baden-Baden. Littig, Beate. 2011. Interviews, expert. In B. Badie, D. Berg-Schlosser and L. Morlino (Eds.), The International Encyclopedia of Political Science, volume 5. London/Thousand Oaks/New Delhi: Sage, 1343–1346. Macdonald, Stephen J. and Clayton, John. 2013. Back to the future, disability and the digital divide. Disability & Society 28, 702–718. Mediengruppe RTL. 2017. Mediengruppe RTL Deutschland baut barrierefreies Angebot aus – “Alles was zählt” künftig mit Untertiteln verfügbar. www. mediengruppe-rtl.de/pressemitteilung/Mediengruppe-RTL- Deutschlandbaut-barrierefreies-Angebot-aus/ [Accessed 13 May 2018]. Medienpädagogischer Forschungsverbund Südwest (2016, 2017) Ofcom. 2015. Disabled Consumers’ Use of Communications Services. A Consumer Experience Report. www.ofcom.org.uk/research-and-data/accessibilityresearch/disabled-consumers-ownership-comms-services [Accessed 13 May 2018]. Ofcom. 2015a. Television Access Services Report 2015. London. www.ofcom. org.uk/__data/assets/pdf_file/0029/71669/access-report-2015.pdf [Accessed 13 May 2018]. RStV, vom 20. Staatsvertrag 1 September 2017. Staatsvertrag für Rundfunk  und Telemedien. www.die-medienanstalten.de/fileadmin/user_upload/ Rechtsgrundlagen/Gesetze_Staatsvertraege/Rundfunkstaatsvertrag_RStV. pdf [Accessed 13 May 2018]. Schröttle, Monika and Hornberg, Claudia. 2011. Vorstudie zur Neukonzeption des Behindertenberichtes: Endbericht. Bielefeld, Bochum, Frankfurt. United Nations. 2006. Conventions on the Rights of Persons with Disabilities. New York. Wacker, Elisabeth. 2016. Beeinträchtigung- Behinderung- Teilhabe für alle. Neue Berichterstattung der Bundesregierung zur Teilhabe im Licht der Behindertenrechtskonvention der Vereinten Nationen. In: Bundesgesundheitsblatt Gesundheitsforschung - Gesundheitsschutz 59 (9), 093–1102. World Health Organization. 2001. International Classification of Functioning. Disability and Health. Geneva: World Health Organization. ZDF. 2017. Barrierefreie Angebote im ZDF. www.zdf.de/barrierefreiheit-im-zdf/ barrierefreiheit-im-zdf-102.html [Accessed 18 December 2018].

Index

Note: Bold page numbers refer to tables and page numbers followed by “n” denote endnotes abject mirth 75–93 ableism 8, 11, 20–2, 23; and Reddit 25–7, 29 abortion 26, 29, 41 access services 156–9 affective economies 36, 39–41, 47 ‘Ag shame’ 138, 144–5 age 166, 168 agency 40 Ahmed, Sara 12, 36, 39–40, 41 amputation 87, 98, 104–5, 106–7 anonymity 24 Antebi, Susan 2 anxieties 20, 22 apartheid 136, 151 audio description 156, 158, 167, 168, 173 austerity 8–9, 12, 24 Australia 6 autoethnography 75–93 Barad, Karen 9 Barker, Clare: The Cambridge Companion to Literature and Disability 9 Barnes, Colin 4 Bennett, Jane 9 biopolitics 10 black comedy 75–93 Blackman, Lisa 10 Blotner, Charlie 59–60, 62, 65, 66, 68 bodies 1, 3, 6–7, 10–11; and affective 39–40; and digital media representation 7–8; and ideal image 12; and illness 55–6, 57; and North Korea 13, 95–6, 97–9, 102–7, 108–10; see also weight loss

Braidotti, Rosi 9 brain tumours 3, 12–13, 51–3, 54, 59–71 #braintumorthursday 53–4, 59–60, 63–4, 68 branding 12, 35–6, 44–6 breast cancer 3, 13, 75–93 Brewer, Jamie 35 Britain see United Kingdom #BrittanyMaynard 53–4, 59–60, 63–4 broadcasting 156–8, 159, 165–75 #btsm community 51, 52, 53–4, 59–60, 62–4, 65–8, 69–70 Bush, George W. 95, 107 cancer see brain tumours; breast cancer celebrity 3, 36, 37–9, 47 chemotherapy 83–6 children 14, 26; and South Africa 135–7, 140, 141–2, 142–53 chromosomes 36, 39, 46, 48n1 colonialism 6–7 commodification 12, 35–6, 46–7 communications 5, 156–60, 166 Compassion & Choices 51, 54, 61–2, 63, 70 Convention on the Rights of Persons with Disabilities (CRPD) 5, 115, 156, 157–8 critical disability studies 138–40 Crowley, Vicki 6 Cumberbatch, Guy 4 cuteness 127 Darke, Paul 8 Davies, Chris 5

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De Beauvoir, Simone: The Second Sex 6 deafness 121–3, 124–5, 146 death 25–7, 41, 55; and right to 54, 61–2, 66, 68–9, 70 debility 10 defectors 94, 95, 96–8, 108, 109–10; and disability 104–5, 106–7; and images 99–100, 101–2 deficiency 146, 148–9 Deleuze, Gilles 1 digital media see Internet; social media Disability Discrimination Act (1995) 4 disability studies 1–6, 9–11, 56, 138–40 disablism 20–2 discrimination 20, 29 Down syndrome 3, 12, 35–9, 40–7 ‘dustbins for disavowal’ 20–2 easy reading 174 economics 12, 20, 27–9; and affective 36, 39–41, 47; and North Korea 96–7, 108 education 14; and South Africa 135–7, 140, 141–2, 142–53 Ellcessor, Elizabeth 9 Ellis, Carolyn 75 Ellis, Katie 5–6, 37 emotions 39–40, 41; see also anxieties employment 5, 27–8 eradication 41 Erevelles, Nirmala: ‘Becoming Disabled’ 40 eugenics 12, 19, 127–8 European Union (EU) 158–9 euthanasia 12, 27, 29 exploitation 46–7 Facebook 35, 38 fatness 42–3 fear see anxieties femininity 98, 100 feminism 54–5, 56–7, 100 financial crisis 8–9 fitness 42, 43, 44–6 Fraser, Benjamin 2 freak shows 19, 47 free speech 24, 29 Galton, Francis 19 gender 96–7, 98–9, 100, 102, 103, 108–9; and Japanese dramas 114–15, 116

Germany 3, 14–15, 156, 157–63, 164, 165–75 Goggin, Gerard 5 Goodley, Dan 4, 7, 11 ‘hard-working taxpayer’ 22, 27 hashtags 53–4, 57–9, 63–5, 68–9 hate 20, 23, 24, 29, 40–1 Hayden, Adam 60, 65–6, 68 headlines 147–8 hearing impairment 161–3, 168–70; see also deafness Hevey, David 20–2 Hickey-Moody, Anna 6 @Hope4GreyMatter 64–5 humour 20, 75–93 I Love It! (Daisuki!) (TV show) 116, 117, 119–20, 123–4, 126–7, 128–30 illness 55–6, 57; see also brain tumours; breast cancer inequality 27–8 Instafame 36, 38 Instagram 3, 35, 38, 42 intellectual disability see learning difficulties international classification of functioning disability and health (ICF) 160–1 internet 7–8, 23, 163, 165–6; and accessibility 158–60, 166–7, 168, 170, 171–2, 173–4 interviews 161–3 Japan 3, 14, 114–18, 119–20, 121–31 Japanese Disability Rights Movement 115, 123, 131n3 Ji Sung-ho 104–5, 106–7 journalism see news coverage; photojournalism Kent, Mike 5 Kim Jong-un 96, 107 Kirkpatrick, Bill 9 Kitô (book) 116–17 Kleinman, Arthur 68 Korean War 97, 99, 100, 101, 102, 109 Latour, Bruno 9 learning difficulties 160, 161–2, 166, 171–2, 174 life 25–7 love 124–7

Index Madeline’s Story (website) 36–7, 42 Marwick, Alice 38 masculinity 98–9 mass games 102 mass media 156–63, 164, 165–75 mastectomy 87–9 Maynard, Brittany 12–13, 51–3, 54, 60–5, 66–71 meaning making 53, 54–5, 56–7, 59–60, 62–3 media 1–3, 4–6, 23; and mass 14–15, 156–63, 164, 165–75; and representation 7–9; and stereotypes 19–20; see also news coverage; photojournalism; social media; television medicine 19, 65–6, 98–9 memetic logics 12–13, 51–4, 58–9, 69 men 96–7, 98–9, 100, 102–6 micro-celebrity 38–9 military parades 13, 100–1, 102–4, 106, 107 Mitchell, David T. 2, 8 mobility impairment 161–2, 170–1 modelling 35–7 monetization 46–7 motherhood 127–30 Murray, Stuart: The Cambridge Companion to Literature and Disability 9 Newell, Cristopher 5 news coverage 3, 14, 106–7; and South Africa 137–8, 140, 141–2, 142–53 newspapers 165, 167–8, 171 North Korea 3, 13, 94–110 Office of Communications (Ofcom) 14, 156–7, 166–7, 171–2 One Liter of Tears (Ichi rittoru no namida) (TV show) 116–17, 119–20, 123–4, 125–6 online communication see internet; social media othering 2, 3, 6–7, 54; and ableism 22; and trauma 56 Paralympics 116 Perspectives of Disability in Broadcasting 4 photojournalism 94–5, 99–107, 109–10 playfulness 13, 54, 57, 64 Pointon, Ann 5

181

The Poison Princess and I (Dokuhime to watashi) (TV show) 116, 117, 119–20, 121–4, 126–7, 129, 130 politics 96, 99–100, 107–8, 150–1, 172–3 prenatal testing 26, 29 Preston, Jeffrey 8 Puar, Jasbir K. 4; The Right to Maim 10, 11 Quetelet, Adolphe: l’homme moyen 19 race 10, 136 Ralph, Negrine 4 Raun, Tobias 39 Reddit 12, 20, 24–9 representation 7–12, 20–1, 152 resistant reading 140, 151–2 right to die 54, 61–2, 66, 68–9, 70 romance 124–7 Salmi, Liz 52, 60, 62, 65–8, 71 schemas 53 sexuality 124–5, 126–7, 128–9, 130, 146 sign language 158, 169, 173 signs 39–40, 41 smartphones 165, 166, 167 Snyder, Sharon L. 2, 8 social identity 40 social media 3, 5, 7–8, 55–7; see also Reddit; Stuart, Madeline; Twitter social participation 5, 14, 115, 117–18, 122–4, 131 soldiers 102–6 South Africa 3, 14, 135–8, 140, 141–2, 142–53 South Korea 96, 97, 99, 105, 108 Spinoza, Baruch 1 Spivak, Gayatri Chakravorty 7 starvation 108 stereotypes 4, 7, 19–20, 41; and South Africa 138, 144–5, 146, 152 sterilization 26, 127–8 Stibbe, Arran 115, 116 stigma 43, 97–8, 115, 128 Stuart, Madeline 12, 35–9, 40–7 subtitles 158, 169, 173 supercrips 8, 41, 45, 115, 138 technology 5–6 television 4, 5, 6; and accessibility 156, 157–8, 159, 166–7, 168–71, 173–4; and Germany 163; and

182

Index

Japanese dramas 14, 114–18, 119–20, 121–31; and North Korea 99 thinness 43 Thread of Our Hearts (Kokoro no ito) (TV show) 116, 117, 119–20, 121–5, 126, 128 tragedy 144–5, 148–9 trauma 52–7, 59, 65–6, 68, 70, 71 Trump, Donald 95, 104, 107 Twitter 3, 5, 35, 38; and brain tumours 12–13, 51–3, 62–3, 65–71; and hashtags 23, 53–4, 57–9, 63–5 United Kingdom (UK) 14–15, 156–7, 160, 166–75 United Nations (UN) 135, 156 United States of America (USA) 26, 104–5, 107

Varney, Eliza 6 visual impairment 161–3, 165, 167–8 voyeurism 145 weight loss 12, 36, 41–6 welfare 8–9, 12, 20, 24, 27–8 wheelchair-users 121–3, 125–6 women 96–7, 99, 100, 103, 109; and Japanese dramas 114–15, 116, 124–31 World Health Organization (WHO) 160–1 YouTube 51–2, 61 Zatôichi 115, 131n1