The Routledge Companion to Disability and Media 1138884588, 9781138884588

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THE ROUTLEDGE COMPANION TO DISABILITY AND MEDIA

An authoritative and indispensable guide to disability and media, this thoughtfully curated collection features varied and provocative contributions from distinguished scholars globally, alongside next-generation research leaders. Disability and media has emerged as a dynamic and exciting area of contemporary culture and social life. Media—especially digital technology—play a vital role in disability transformations, with widespread implications for global societies and how we understand communications. This book addresses this development, from representation and audience through technologies, innovations and challenges of the field. Through the varied and global perspectives of leading researchers, writers and practitioners, including many authors with lived experience of disability, it covers a wide range of traditional, emergent and future media forms and formats. International in scope and orientation, The Routledge Companion to Disability and Media offers students and scholars alike a comprehensive survey of the intersections between disability studies and media studies. Katie Ellis is Associate Professor in Internet Studies and Director of the Centre for Culture and Technology at Curtin University (Australia). She has worked with people with disabilities in government, academia and the community. She has authored and edited 15 books and numerous articles on the topic, including two award-winning papers on digital access and social inclusion. Gerard Goggin is Wee Kim Wee Chair in Communication Studies at Nanyang Technological University (Singapore). He is also Professor of Media and Communications at the University of Sydney. With Christopher Newell, he authored the highly influential Digital Disability (2003) and Disability in Australia (2005; winner of the Australian Human Rights Commission Arts Nonfiction Award). Other key books include Normality and Disability: Intersections Among Norms, Laws and Culture (2018; with Linda Steele and Jess Cadwallader) and Listening to Disability: Voices of Democracy (2020; with Cate Thill and Rosemary Kayess). Beth Haller is the author of Representing Disability in an Ableist World: Essays on Mass Media (2010) and the editor of Byline of Hope: Collected Newspaper and Magazine Writing of Helen Keller (2015). She has been researching news and entertainment media images of disability since 1991. She is currently Professor of Mass Communication at Towson University in Maryland (USA), where she also teaches in the University’s Applied Adult Disability Studies minor. She is an adjunct disability studies professor at City University of New York and York University (Canada). Rosemary Curtis is a researcher with over 40 years experience specializing in the screen industries. Following ten years in the library at the Australian Film, TV and Radio School, Rosemary managed the research unit at the Australian Film Commission and Screen Australia from 1990 to 2009. In 2000 Rosemary was awarded the Australian Communications Research Forum award for Outstanding Contribution to Research in an area of Communications.

THE ROUTLEDGE COMPANION TO DISABILITY AND MEDIA

Edited by Katie Ellis, Gerard Goggin, Beth Haller and Rosemary Curtis

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 Taylor & Francis The right of Katie Ellis, Gerard Goggin, Beth Haller and Rosemary Curtis 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 for this title has been requested ISBN: 978-1-138-88458-8 (hbk) ISBN: 978-1-315-71600-8 (ebk) Typeset in Bembo by Swales & Willis, Exeter, Devon, UK

We dedicate this volume to those striving to ensure the involvement of people with disabilities in all aspects of the media—from inception to consumption.

CONTENTS

List of Figures List of Tables Acknowledgments Notes on Contributors Foreword by Faye Ginsburg

xi xiii xiv xv xxii

Introduction: Disability and Media—An Emergent Field Katie Ellis, Gerard Goggin, Beth Haller and Rosemary Curtis

1

PART I

Imagining and Representing Disability

11

1 Disability Imaginaries in the News Tanya Titchkosky

13

2 What’s It All Worth? The Political Economy of Disability Representation in Indian Media Nookaraju Bendukurthi and Usha Raman

23

3 Decolonizing the Dynamics of Media Power and Media Representation Between 1830 and 1930: Australian Indigenous Peoples with Disability John Gilroy, Jo Ragen and Helen Meekosha

35

4 Featuring Disabled Women in Advertisements: The Commodification of Diversity? Ella Houston

50

vii

Contents

9

5 Still Playing It Safe: A Comparative Analysis of Disability Narratives in The Sessions, Breathing Lessons and “On Seeing A Sex Surrogate” Jonathan Bartholomy

59

6 Mental Distress, Romance and Gender in Contemporary Films: Greenberg and Silver Linings Playbook Alison Wilde

67

7 Still Julianne: Projecting Dementia on the Silvering Screen Sally Chivers

78

8 Authentic Disability Representation on US Television Past and Present Beth Haller

88

The Spectacularization of Disability Sport: Brazilian and Australian Newspaper Photographs of 2012 London Paralympic Athletes Tatiane Hilgemberg, Katie Ellis and Madison Magladry

101

10 George R. R. Martin and the Two Dwarfs Mia Harrison

113

11 Embodying Metaphors: Disability Tropes in Political Cartoons Beth Haller

122

12 Resisting Erasure: Reading (Dis)Ability and Race in Speculative Media Sami Schalk

137

PART II

Audience, Participation and Making Media

147

13 Producerly Disability Popular Culture: The Collision of Critical and Receptive Attitudes Katie Ellis

149

14 The Bodies of Film Club: Disability, Identity and Empowerment Fiona Whittington-Walsh, with Kya Bezanson, Christian Burton, Jaci MacKendrick, Katie Miller, Emma Sawatzky and Colton Turner

158

15 Disability Narratives in the News Media: A Spotlight on Africa Olusola Ogundola

169

16 Disabled Media Creators in Afghanistan, China and Somalia Patricia Chadwick

177

17 Youth with Disabilities in Africa: Bridging the Disability Divide Kimberly O’Haver

189

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Contents

18 Engaging Accessibility Issues Through Mobile Videos in Montréal Laurence Parent

199

19 Pages of Life: Using a Telenovela to Promote the Inclusion of Students with Disabilities in Brazil Patricia Almeida

209

20 How Do You Write That in Sign Language? A Graphic Signed Novel as a Source of Epistemological Reflection on Writing Véro Leduc

220

PART III

Media Technologies of Disability

231

21 GimpGirl: Insider Perspectives on Technology and the Lives of Disabled Women Jennifer Cole and Jason Nolan

233

22 Digital Media Accessibility: An Evolving Infrastructure of Possibility Elizabeth Ellcessor

243

23 Making the Web More Interactive and Accessible for Blind People Jonathan Lazar and Brian Wentz

252

24 Social Media and Disability: It’s Complicated Mike Kent

264

25 When Face-to-Face Is Screen-to-Screen: Reconsidering Mobile Media as Communication Augmentations and Alternatives Meryl Alper

275

26 Mobile Phones and Visual Impairment in South Africa: Experiences from a Small Town Lorenzo Dalvit

285

27 Video on Demand: Is This Australia’s New Disability Digital Divide? Wayne Hawkins 28 Individuals with Physical Impairments as Life Hackers? Analyzing Online Content to Interrogate Dis/Ability and Design Jerry Robinson 29 Interdependence in Collaboration with Robots Eleanor Sandry

ix

295

306

316

Contents

PART IV

Innovations, Challenges and Future Terrains of Transformation

327

30 Dropping the Disability Beat: Why Specialized Reporting Doesn’t Solve Disability (Mis)representation Chelsea Temple Jones

329

31 Advertising Disability and the Diversity Directive Josh Loebner

341

32 Disability Advocacy in BBC’s Ouch and ABC’s Ramp Up Shawn Burns

356

33 Representing Difference: Disability, Digital Storytelling and Public Pedagogy Carla Rice and Eliza Chandler

367

34 Needs Must: Digital Innovations in Disability Rights Advocacy Filippo Trevisan

377

35 Disability Media Work Katie Ellis and Melissa Merchant

387

36 Books and People with Print Disabilities: Public Value and the International Disability Human Rights Agenda David Adair and Paul Harpur

400

Index

411

x

FIGURES

Cover © Alan Constable, courtesy of the artist and Arts Project Australia, Melbourne 3.1 Cartoon depicting a slave trader luring buyers to his “niggers for hire” stand, Bulletin 6, no. 6 (April 30, 1881). 9.1 Breakdown of number of articles by newspaper (Brazil). 9.2 Proportion of photographs by photographic angle and athletes’ gender (Brazilian newspapers). 9.3 Breakdown of number of articles by newspaper (Australia). 9.4 Proportion of photographs by photographic angle and athletes’ gender (Australian newspapers). 11.1 Thomas Nast cartoon of Abraham Lincoln and his cabinet titled “Schoolmaster Lincoln and His Boys,” published in the Southern Illustrated News, January 31, 1863. 11.2 Thomas Nast cartoon of Uncle Sam titled “Dr. Arthur’s Prescriptions,” published in Harper’s Weekly, December 16, 1882. 11.3 Jay N. “Ding” Darling cartoon of President Woodrow Wilson and Uncle Sam titled “So Many People Are Asking, It Would Be Interesting to Know,” published in Des Moines Register, March 4, 1917. 11.4 Pat Oliphant cartoon featuring President Bill Clinton and Secretary of State Warren Christopher. 11.5 Cartoon about US foreign policy under Secretary of State John Kerry from June 2, 2015. 18.1 Screenshot from Cripping the Landscape 1: Québec City, directed by Laurence Parent (Québec: m.i.a media production, 2013), showing that when the camera is attached to the wheelchair’s footrest structure the view is significantly lower than the user’s eye level. 18.2 Screenshot from Cripping the Landscape 1: Québec City, directed by Laurence Parent (Québec: m.i.a media production, 2013), shows a pedestrian crossing button out of reach to a wheelchair user. A written caption on the image reads “Danger: Inaccessible pedestrian crossing button.” 25.1 Jane and Stephen try to communicate with a spelling board. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014). xi

37 104 105 106 107 127 128 129 130 131

202

203 279

Figures

25.2 Stephen looks longingly at Elaine through the spelling board. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014). 25.3 Stephen tells Jane that she will not be accompanying him overseas using his mobile AAC system. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014).

xii

280 280

TABLES

3.1 Terms describing disability searched in the newspapers database, 1830–1939 3.2 Terms describing Australian Indigenous peoples searched in the newspapers database, 1830–1939 3.3 Number of relevant newspaper articles per decade, 1830s–1930s 9.1 Type of visible disability portrayed (Brazilian newspapers) 9.2 Type of visible disability portrayed (Australian newspapers) 11.1 Categories of representations of disabilities/bodily impairments in political cartoons 28.1 Data corpus 28.2 Deductive codes from types of innovation/innovatory use frameworks

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39 40 41 106 107 125 308 309

ACKN OW LEDGM E N TS

Katie wishes to thank her funding source the Australian Research Council Discovery Early Career Researcher Award (DE130101712). Gerard also wishes to thank the Australian Research Council for his Future Fellowship award (FT130100097) that supported his research and work on this Companion. It has been our pleasure to once again work with the talented and consummate publishing professionals at Routledge. Special thanks to Erica Wetter for her commissioning of the project and thoughtful feedback and great support throughout, also to Mia Moran and Emma Sherriff for all their help in bringing this volume to completion. We are also very grateful to Kelly Derrick for her meticulous copy-editing of the manuscript.

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N O T E S ON CO N T R I B U T O R S

David Adair teaches in the School of Humanities, Languages and Social Science at Griffith University. His publications include: “‘Genuine Mutual Benefits’: A Public Value Account of Arts Community Engagement Programs as Core Business” (2014); Who Profits from the Arts? Taking the Measure of Culture (2007) with Kay Ferres; and “Cultural Indicators: Assessing the State of the Arts in Australia” (2010) with Ferres and Ronda Jones. He also co-authored Vital Signs: Cultural Indicators for Australia (2010), the indicator discussion paper for the Australian Federal Government’s Creative Australia: National Cultural Policy (2013). Patricia Almeida is the creator, co-founder and coordinator of the Global Alliance for Disability in

Media and Entertainment (GADIM). A former journalist in Brazil, she is a member of the board of Down Syndrome International, member of the International Disability Alliance, co-founder of Movimento Down in Brazil, founder of Inclusive – Inclusion and Citizenship and coordinator of MetaSocial Institute, which works with media in Brazil to promote the rights of persons with disabilities. Meryl Alper (PhD, University of Southern California; B.S., Northwestern University) is Assistant

Professor of Communication Studies at Northeastern University. Her work focuses on the social and cultural implications of communication technologies, with a focus on disability and digital media, children and families’ media use and mobile communication. Dr. Alper is the author of Digital Youth with Disabilities (2014) and Giving Voice: Mobile Communication, Disability, and Inequality (2017). Jonathan Bartholomy is currently an independent scholar originally from Toledo, Ohio. He received his MA in American Culture Studies from Bowling Green State University (2010) and his MS in Disability and Human Development from the University of Illinois at Chicago (2016). His main interests include examining issues of disability representation and how people with disabilities experience film. He served as a program committee member of the Chicago ReelAbilities Film Festival in 2015, 2017 and 2019. Nookaraju Bendukurthi is Assistant Professor at the Department of Convergent Journalism, School of Media Studies, Central University of Kashmir. He obtained his Masters and PhD in Communication from the University of Hyderabad. He teaches communication theories and models, media research, communication and culture and advertising. His research interests are disability representation in

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Notes on Contributors

media, media and marginality, frame analysis and visual ethnography. His doctoral thesis titled “Disability Construction in an Ableist Media World: Framing Difference, Facilitating Inclusion” explores the issues of representation, inclusion and production in Indian news media. Shawn Burns is a journalism lecturer and PhD candidate at the University of Wollongong, NSW,

Australia. He researches the representation of people with disability in news media, newsroom practice and pedagogy. He is a former news journalist, news director and political media adviser. Shawn received a National Office for Learning and Teaching (OLT) Citation for Outstanding Contributions to Student Learning (2013) and a University of Wollongong Outstanding Contribution to Teaching and Learning award (2011). Patricia Chadwick is a communications specialist and web developer with Internews, an international media development non-profit. She has a long-time interest in media representations and inclusion of people with disabilities. In 1995, she co-founded, with her late husband and disability activist Stephen Dias, the Disability Social History Project, a website that archives disability culture, media and history. Patricia has a master’s degree in Radio and TV from San Francisco State University. Eliza Chandler is Assistant Professor in the School of Disability Studies at Ryerson University and, previous to this role, was the artistic director of Tangled Art + Disability, a disability arts organization in Toronto, Canada. Chandler’s research brings together disability arts, disability studies and activism, including her co-directorship of Bodies in Translation: Activist Art, Technology, and Access to Life. Chandler is also a practicing curator. Sally Chivers is Professor of English Literature and Gender and Women’s Studies at Trent University. Along with critical articles and book chapters about aging, disability, care and culture, she is the author of From Old Woman to Older Women: Contemporary Culture and Women’s Narratives (2003) and The Silvering Screen: Old Age and Disability in Cinema (2011), as well as co-editor of The Problem Body: Projecting Disability on Film (2010) and Care Home Stories: Aging, Disability and Long-Term Residential Care (2017). Jennifer Cole is a founding member and director of the GimpGirl Community. Jennifer is a research associate in the Experiential Design and Gaming Environments (EDGE) Lab at Ryerson University. She has also worked with state and local governments to create policy recommendations around women with disabilities and sexual health. She is an invited speaker and author on topics such as disability, social media, technology and sexuality. Rosemary Curtis is a researcher with over 40 years experience specializing in the screen industries. Following ten years at the library at the Australian Film, TV and Radio School, Rosemary managed the research unit at the Australian Film Commission and Screen Australia from 1990 to 2009. In 2000 Rosemary was awarded the Australian Communications Research Forum Award for Outstanding Contribution to Research in an Area of Communications. Lorenzo Dalvit is Head of ICT Education at Rhodes University in Grahamstown, South Africa

and Visiting Professor in the ICT4G Unit at Fondazione Bruno Kessler in Trento in Italy. He recently concluded a four-year secondment to the Rhodes School of Journalism and Media Studies as the MTN Chair of Media and Mobile Communication. He also worked on externally funded positions in the African Language Studies Section and in the Computer Science Department at Rhodes. xvi

Notes on Contributors

His areas of academic interest include digital communication theory and education, mobile and ICT for development, access and power in the African Information Society with a particular focus on issues of education, language, disability, rurality and gender. Elizabeth Ellcessor is Assistant Professor in Media Studies at the University of Virginia. Her research focuses on media access, disability and digital technologies and she is the author of Restricted Access: Media, Disability, and the Politics of Participation (2016). She is also, with Bill Kirkpatrick, editor of Disability Media Studies (2017). Katie Ellis is Associate Professor in Internet Studies and Director of the Centre for Culture and Technology at Curtin University (Australia). She has worked with people with disabilities in government, academia and the community. She has authored and edited 15 books and numerous articles on the topic, including two award-winning papers on digital access and social inclusion. John Gilroy is a Koori man from the Yuin Nation and is a doctor of sociology in Indigenous health, specializing in disability studies. John has worked in disability and ageing research and community development with Aboriginal and Torres Strait Islander communities, government and non-government stakeholders for over ten years. John is passionate about Aboriginal community owned and driven research as a means to influence policy. Since completing his PhD in 2013, John has been involved in a range of projects with Aboriginal and Torres Strait Islander peoples with disabilities, their families and communities. Gerard Goggin is Wee Kim Wee Chair in Communication Studies at Nanyang Technological University (Singapore). He is also Professor of Media and Communications at the University of Sydney. With Christopher Newell, he authored the highly influential Digital Disability (2003) and Disability in Australia (2005; winner of the Australian Human Rights Commission Arts Nonfiction Award). Other key books include Normality & Disability: Intersections Among Norms, Laws and Culture (2018; with Linda Steele and Jess Cadwallader) and Listening to Disability: Voices of Democracy (2020; with Cate Thill and Rosemary Kayess). Beth Haller is the author of Representing Disability in an Ableist World: Essays on Mass Media (2010)

and editor of Byline of Hope: Collected Newspaper and Magazine Writing of Helen Keller (2015). She has been researching news and entertainment media images of disability since 1991. She is currently Professor of Mass Communication at Towson University in Maryland (USA), where she also teaches in the University’s Applied Adult Disability Studies minor. She is an adjunct disability studies professor at City University of New York and York University (Canada). Paul Harpur is a senior lecturer with the TC Beirne School of Law at the University of Queens-

land, Australia; an international distinguished fellow with the Burton Blatt Institute, Syracuse University, New York; and a Fulbright Fellow, with the 2019 Fulbright Futures Scholarship (visiting Harvard University and Syracuse University). He has published a leading monograph with Cambridge University Press, 45 refereed journal articles and 8 book chapters. In addition to being a full-time academic and part-time special advisor on employment laws with a national industrial relations law firm, Paul is a former Paralympian. Mia Harrison is a PhD candidate in the Gender and Cultural Studies department at the University

of Sydney. Her thesis connects representations of the zombie body in contemporary popular media to notions of non-normative bodies in Western culture. Her research interests include critical disability studies, body culture studies and pop culture analysis. xvii

Notes on Contributors Wayne Hawkins is a doctoral candidate at Sydney University, undertaking a Critical Disability

Studies (CDS) analysis of Australian communications policy post Australia’s 2008 ratification of the United Nations Convention on the Rights of Persons with Disabilities. Wayne is also Director of Inclusion with the Australian Communications Consumer Action network (ACCAN) where he leads the organization’s work in the area of disability access to telecommunications, broadband and broadcast services. Tatiane Hilgemberg is Assistant Professor in Communication and a researcher at Roraima Federal

University, Brazil. She received her doctorate in Communication from the State University of Rio de Janeiro. She started to do research in the field of Paralympic Games and media in her early years as an undergraduate student, a subject that she continued to study during her Masters in Communication Science at Porto University as well as for her PhD. Her research interests include critical disability studies and sports, stereotypes and the media and minorities and the media. Ella Houston is a lecturer in disability and education, in the faculty of education, at Liverpool

Hope University. Ella holds a Health Research PhD from Lancaster University. Her thesis examines the representation of disabled women in Anglo-American advertising from a feminist disability studies perspective and analyzes the extent to which cultural stereotypes perpetuated in advertisements may impact on individual levels of subjective well-being. Chelsea Temple Jones teaches various disability studies and journalism courses in Toronto through Ryerson University, University of Toronto and Humber College. She holds an MA in Disability Studies from York University, where her research focused on the “backstories” of media-makers working on disability-related journalism. A radio journalist by training, Jones’ feature writing has appeared in the UC Observer, Ms. and Abilities magazine. She holds a PhD in Communication and Culture from Ryerson and York University. Mike Kent is Head of Department and a senior lecturer at the Internet Studies Department at

Curtin University. Mike’s primary research and writing focus is on people with disabilities and their use of, and access to, information technology, the Internet and online social networks. His other main area of research interest is in higher education and particularly online education. Jonathan Lazar is a professor in the College of Information Studies at the University of Mary-

land. Dr. Lazar is a faculty member in the UMD Human–Computer Interaction Lab (HCIL) and serves as Associate Director of the UMD Trace Research & Development Center, the oldest research center on technology and disability in the United States. He has authored or edited 12 books, including the well-known Research Methods in Human–Computer Interaction (2017), published over 140 articles and has been granted two US patents for his work on accessible webbased security features for blind users. Véro Leduc is an artist, engaged scholar and Professor in Communication Studies at the University of Quebec in Montreal. The first Deaf university professor in Quebec, Véro teaches in the program of cultural action. Member of numerous research teams, her projects and practices are anchored in research creation as well as critical, feminist, queer, intersectional, crip and Deaf perspectives. Véro’s current research focuses on Deaf and disability arts practices in Canada, Deaf music and cultural accessibility and citizenship.

xviii

Notes on Contributors Josh Loebner serves as Director of Strategy at Designsensory. He is earning his PhD from Clemson University focusing on advertising and disability and is an adjunct faculty at various universities. He authors the blog advertisinganddisability.com (http://advertisinganddisability.com). He is an inductee in the American Advertising Federation—Knoxville Advertising Hall of Fame and was awarded the American Advertising Federation Robert McCabe National Silver Medal in 2018. He is partially blind and visually impaired and he always clearly sees the best in everyone. Madison Magladry is a PhD candidate in the school of Media, Creative Arts and Social Inquiry at Curtin University in Perth, Western Australia. Her thesis examines the field of women’s fitness culture, with an emphasis on new media and postfeminism. Helen Meekosha is Honorary Associate Professor in the School of Social Sciences at the University of New South Wales (UNSW), Sydney, Australia. Her work in Critical Disability Studies has broken new ground in setting disability in a context of neoliberalism and globalization, in particular arguing the case for an examination of global North/South relations that affect the incidence and production of disability. Melissa Merchant is Lecturer and Early Career Researcher in the School of Arts at Murdoch Uni-

versity in Western Australia. In collaboration with Katie Ellis, her research has focused on disability and the media. In addition to this, Melissa’s research has also looked at Early Modern drama, Shakespeare and Restoration adaptations and more recently popular culture and media representations. Jason Nolan is autistic and has worked with the GimpGirl community for over a decade. He is Asso-

ciate Professor in Early Childhood Studies at Ryerson University, where he directs the Responsive Ecologies Lab and the EDGE Lab. His research focuses on user-initiated design and the creation of custom adaptations for disabled individuals. In 2014, he established Diseñando Para El Futuro, a nongovernmental organization in Cochabamba, Bolivia, which creates adaptations for disabled children. Kimberly O’Haver is a program officer with an international philanthropic institution based in the United States. In addition to working on issues of disability rights, she is passionate about youth activism and empowerment. Raised by an occupational therapist, she stumbled into the field of disability rights activism while living in Russia. She has previously written about how journalists and the print media report on the UN Convention on the Rights of Persons with Disabilities. Olusola Ogundola is the Executive Director of Project Restoration International (PRI), a disability rights organization he founded in 2009. He received his bachelor’s degree in Library and Information Studies (BLIS) from the University of Ibadan, Nigeria and then proceeded to Syracuse University, USA, for a master’s degree in Media Studies. His research interest centers on media and diversity issues. He is an alumnus of the International Fellowship Program (IFP). Laurence Parent is a PhD candidate in Humanities at Concordia University. She holds an MA in Critical Disability Studies from York University and a BA in Political Science from Université du Québec à Montréal. She lives in Montréal and is passionate about disability activism, disability history and mobility. Over the past decade she has been actively involved in a number of disability rights organizations. Jo Ragen is a Senior Research Associate with the Faculty of Human Services at Macquarie Uni-

versity, an Associate with the Centre for Disability Research and Policy and a PhD candidate at xix

Notes on Contributors

Sydney University. Her research interests include participation in everyday life for diverse populations, human rights and disability studies. Usha Raman is Professor of Communication at the Department of Communication, Sarojini Naidu School Arts & Communication, University of Hyderabad. Her teaching and research interests span the areas of narrative journalism, science and health communication, cultural studies of science and digital culture. Usha Raman conceived and supervised the doctoral study “Disability Construction in an Ableist Media World,” conducted by Nookaraju Bendukurthi. Carla Rice is Professor and Canada Research Chair at the University of Guelph, specializing in embodiment studies and in creative research methodologies. In 2012, she founded Re•Vision: The Centre for Art and Social Justice as an arts-informed research hub with a mandate to foster inclusive communities, social well-being, equity and justice. She has received awards for advocacy, research and mentorship and has published on embodied difference, non-normative cultures and practices of accessibility and inclusion. Jerry Robinson received his PhD in Information Science from the Syracuse University iSchool in May 2018. His dissertation research explored the life hacking-enabled daily life practices of individuals with disabilities and their implications for the accessible design community. Jerry’s work examined various aspects of his study participants’ self-driven efforts to make daily life practices more accessible. Their life hacking activities contradicted ableist and deficit model mindsets, which factor into practice entanglements both in reified form as professionally designed accessibility products and through professional design, funding and maintenance practices. Eleanor Sandry is a lecturer and researcher in Internet Studies at Curtin University. Her research

is focused on developing an ethical and pragmatic recognition of, and respect for, otherness and difference in communication. She is particularly interested in exploring the communicative and collaborative possibilities of human interactions with robots. Sami Schalk is Assistant Professor of Gender and Women’s Studies at University of Wisconsin–

Madison. Her research focuses on the representation of disability, race and gender in contemporary American literature and culture, especially African American literature and women’s literature. Sami’s work has appeared in Disability Studies Quarterly, Journal of Modern Literature, Journal of Literary and Cultural Disability Studies, Journal of Popular Culture and elsewhere. Her first book, Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction was published in March 2018. Tanya Titchkosky, Professor, OISE, University of Toronto, is author of Disability, Self, and Society

(2003), as well as Reading and Writing Disability Differently (2007) and The Question of Access: Disability, Space, Meaning (2011). Tanya holds that whatever else disability is, it is tied up with the human imagination—interpretive relations—and needs to be studied as such. Her work is aided by a SSHRC grant of Canada, “Reimaging the Appearance and Disappearance of Disability in the Academy.” Filippo Trevisan is Assistant Professor in the School of Communication and Deputy Director of

the Institute on Disability and Public Policy at the American University in Washington, DC. His research focuses primarily on online advocacy, activism and political communication. He has studied how disability rights advocates use new media technologies for over a decade and is the xx

Notes on Contributors

author of Disability Rights Advocacy Online: Voice, Empowerment and Global Connectivity (2016). He blogs at www.filippotrevisan.net and his Twitter handle is: @filippotrevisan. Brian Wentz, Associate Professor in Management Information Systems, is frequently involved

with applied research that focuses on the implications that web accessibility and usability can have on business, education, employment, public policy and societal inclusion. For more than 13 years, he has been involved in a variety of projects related to web accessibility and usability for people with disabilities. Dr. Wentz has published over 25 refereed articles in journals, books and conference proceedings. In 2013, he received the 2013 Honorary Service Award from the Pennsylvania Council of the Blind and he is currently a research advisor to a non-profit (My Blind Spot) located in New York City. Fiona Whittington-Walsh, PhD, is Chair of the Department of Sociology at Kwantlen Polytechnic

University (KPU) in Langley, British Columbia. She is also President, Board of Directors, of Inclusion BC, a non-profit organization that advocates for and with families and individuals with intellectual and developmental disabilities. Her main area of research and writing involves examining disability, gender and the media. She is currently principal researcher for the Including All Citizens Project (IACP), a pilot project where five students with intellectual disabilities are enrolled in university courses for credit and on par with their peers. There are no curriculum adaptations just transformative teaching that teaches to a wide range of learners using the principles of universal design for learning. Alison Wilde is a senior lecturer at Leeds Beckett University and a board member and reviewer for Disability Arts Online. Alison has written mainly on topics of screen media, disability, gender and audiences, in addition to researching and publishing on disability and education, parenting, social and health care. She is currently completing her first book on comedy, film and disability.

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FOREWORD TO THE ROUTLEDGE COMPANION TO DISABILITY AND MEDIA (OR: A COMPANION ON THE RAMP LESS TRAVELED) Faye Ginsburg DAVID KRISER PROFESSOR OF ANTHROPOLOGY, NEW YORK UNIVERSITY DIRECTOR, NYU CENTER FOR MEDIA, CULTURE AND HISTORY CO-DIRECTOR, NYU CENTER FOR DISABILITY STUDIES

The Routledge Companion to Disability and Media could not come at a more propitious moment. As this extraordinary compendium of 36 timely chapters makes clear, the experience of disability is intersecting with a broad reach of media practices that are burgeoning across the globe, demanding the kind of scholarly and activist attention that is richly evident in this groundbreaking volume. A companion, as we know, is a counterpart with whom one spends a lot of time, a welcome escort on a journey through territory that might be either familiar or novel. This ambitious landmark collection certainly lives up to the title of companion, escorting readers on an illuminating expedition. The works gathered together here concern circumstances encountered in diverse locations, addressing sensory, cognitive and physical disability as these bodyminds1 intersect with questions of representation, agency, authenticity/appropriate casting, access to media and the possibilities and foreclosures presented by new technologies. Most of the robust writing in disability and media studies has come from the Anglophone worlds where these fields first took shape. The inclusion of work from more than 12 countries—including a number of pieces from the toooften neglected global South as well as First Nations—is a welcome expansion and a reminder of the privileges that First Worlders too often take for granted. Additionally, the variety of media/ practices encompassed in this collection ensures that this book will be widely used across many disciplines and attract diverse readers. Indeed, I can’t think of an existing work in disability/ media studies that speaks to such a broad spectrum of media worlds. The media forms addressed here include: advertising books/print media digital storytelling digital/social media feature films graphic novels newspapers/journalism photojournalism xxii

Foreword to the Routledge Companion to Disability and Media

political cartoons robots speculative media sports reporting telephony television (including genres such as telenovelas, sitcoms, dramatic series, documentaries) video on demand The wide-ranging writings that the editors have gathered open up new and exciting horizons that build on important earlier work in what Elizabeth Ellcessor and Bill Kirkpatrick dubbed in their 2017 volume, Disability Media Studies.2 Indeed, the three editors—Gerard Goggin, Katie Ellis and Beth Haller—are well-known for creating the intellectual frameworks for scholarship on disability and media on which this collection builds. Their contributions include important foundational works that have framed the field: Gerard Goggin and Chris Newell’s Digital Disability: The Social Construction of Disability in New Media (2003); Beth Haller’s Representing Disability in an Ableist World: Essays on Mass Media (2010); Katie Ellis and Mike Kent’s Disability and New Media (2013); Katie Ellis and Gerard Goggin’s Disability and the Media (2015); and Katie Ellis and Mike Kent’s 2016 edited volume Disability and Social Media: Global Perspectives.3 Underscoring the significance of the emergent interdisciplinary field of disability and media, American media scholars Ellcessor and Kirkpatrick’s aforementioned edited collection Disability Media Studies (2017), along with Ellcessor’s Restricted Access: Media, Disability and the Politics of Participation (2016),4 are further testimony to the fact that neither disability or media studies are complete without consideration of the other field. Should anyone question the value of interdisciplinarity, a few hours perusing different chapters in this newest contribution to the field will yield convincing evidence of the liveliness of cross-pollination, not only across academic approaches, but also with respectful inclusion of the voices of activists and policymakers. It’s exciting to see how rapidly disability media studies has expanded from the first important interventions by groundbreaking scholars who directed our attention to issues of textual representation. For example, the 2001 book, Narrative Prosthesis by David Mitchell and Sharon Snyder, is among the key works frequently cited by many of this collection’s authors.5 There, Mitchell and Snyder powerfully demonstrate how disabled characters in literature and film have too frequently served as narrative prostheses, the neologism they use to describe how these figures become metaphors for either evil or for tragic loss, rather than as fully developed and complex characters living in the real world. While this approach is, alas, still with us, as several writers in the current collection remind us, the field has also moved along in terms of: what is getting produced and by whom; the rich portrayals of disabled characters (whether in fiction or documentary) including increasing appropriate/authentic casting; who has access to media viewing; and who is authoring texts or directing cameras. Recent films such as Me Before You (2016)6 serve as reminders not only of the tenacity of narrative prosthetics in the cinematic imaginary, but also of the persistence of the too-long-standing tradition of having disabled characters played by normate actors (or what Tobin Siebers dubbed “disability drag”),7 long considered Oscar-bait, but heavily critiqued by many in this volume and beyond. As activist, scholar and performer Lawrence Carter-Long wrote in his 2019 manifesto on disability and film for the journal Film Quarterly: Once upon a time, disability was just a diagnosis. That’s all you got. Something to be fixed, cured, cut out, or gotten rid of. Through time, the definition has evolved to mean much more. Nearly three decades after the passage of the Americans with Disabilities Act, ask anyone with a disability who politically, culturally, or artistically embraces the rebellious act of being disabled what the word means to her or him, and you’ll most xxiii

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likely hear back words like “community,” “constituency, and identity.” No handkerchief necessary. No heroism required. By any definition, that’s progress. But if we are to expand deeper meaning beyond the flock, these changes must be reflected in the movies we make, the films we watch, how we watch those movies, and perhaps most importantly, who gets to make them.8 Yet that older problematic approach is increasingly disrupted by exciting new works across the televisual, cinematic and online mediascape that are by, for and about those with disabilities and their allies. It seems that an embrace of the well-known disability rights slogan “Nothing About Us Without Us” (or “Nothing Without Us,” as Lawrence Carter-Long has rephrased it) is slowly but surely penetrating the disability media world. Beyond the representational arena, the work in this volume addresses both very contemporary as well as long-standing concerns regarding the need for more inclusive technologies of mediation. Many of the articles in this volume fulfill the call generated by media scholars Jonathan Sterne and Mara Mills in their afterword to the aforementioned Disability Media Studies.9 Entitled “Dismediation: Three Proposals, Six Tactics,” they offer a mild polemic emphasizing the need for broadening our approaches to media in relation to disability by theorizing media change and technical design from a disability studies perspective, suggesting that we use the neologism dismediation to capture this perspective. As they write: Dismediation centers disability and refuses universal models of media and communication. It begins from a presumption of communicative and medial difference and variety rather than seeing media as either the tools to repair a damaged or diminished condition of human communication or themselves the cause of a fall from prior perfection … dismediation appropriates media technologies and takes some measure of impairment to be a given, rather than an incontrovertible obstacle or a revolution.10 Without using the language of dismediation, the editors and many of the writers in this Companion are answering the call issued by Mills and Sterne. Their research attends to the intersection of disability and media both on-screen and off-screen conditions that “crip the media” through the affordances that enable those with sensory impairments access to print, television, film and other popular forms: these include (but are not limited to) closed captioning for d/Deaf audiences, audio description for those with low vision or who are blind, accommodations increasingly mandated by law in some locations, while embraced by disabled artists as an incitement to creativity. As an anthropologist trained in one of the few disciplines not represented in this volume, I feel compelled to conclude with a few very recent examples drawn from the last month that offer a lively, ethnographic sense of the transforming place of media in a variety of growing disability media worlds.11 •

In April, as part of an offsite screening at NYU for the Reelabilities Film Festival12 that I have worked on since its inception over a decade ago, we showed the riveting Australian documentary Gurrumul, about the blind Indigenous musician of the film’s title whose traditional life as well as success on the world stage shape the arc of the film’s narrative.13 Despite the fact that the film had a well-crafted audio description track and that we had excellent headphones, as well as a state of the art theatre, we could not get the technology to work to provide the additional track for blind audience members. As so often happens in settings where accommodations fail on more than one occasion, we improvised, setting aside a section of the theater, where people with limited vision who needed support could sit with sighted companions who quietly provided a whispered live audio description track. xxiv

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•

In the last class of my doctoral seminar last week, several students mentioned watching the season finale and last episode of Speechless, (discussed by Beth Haller in this volume) in which the central character JJ, who has cerebral palsy (played by the actor Micah Fowler who has cerebral palsy), graduates from high school.14 He is selected to be the graduation speaker, communicating (as is his typical mode) with his laser pointer headgear to indicate words, on a board attached to his wheelchair, while his family steps up to read these aloud for him when his support person chokes up. JJ advises his classmates to “be unrealistic.” The final scene reveals him starting college at NYU, a plot twist that provoked discussion in the class. As it turned out, this last episode of this trailblazing show was followed by the disappointing announcement of its cancellation, a blow for fans of this thoroughly cripped sitcom. However, a new Netflix series, Special, hit the news cycle the same month, publicized as an unconventional comedy headlining Ryan O’Connell, a young gay TV writer and actor with cerebral palsy playing himself, launched first by eight 20-minute online episodes.15 Special received widespread and positive press coverage. In one of his many interviews, O’Connell reminded his interlocutor of the potential size of the audience of viewers who identify as disabled: [The show] changes the conversation surrounding those with disabilities and provides much-needed visibility for the estimated 61 million Americans who identify as having a disability … You have a totally untapped demo[graphic] that is starving for stories like theirs, and we’re gonna ignore it? That doesn’t make sense. For so long, we’ve been ignored. I really hope that stops.16

•

•

In May, I went to the opening of a brilliant gallery exhibit entitled Crip Imponderabilia,17 curated by a terrific NYU MA student, Bojana Coklyat, an artist with low vision. The show was based on her thesis entitled “Beyond the Limits of Ocular-Centric Art Experience: Centering Disability in the Gallery.” The space filled with remarkable works by disabled artists addressing questions raised by their diverse experiences of disability. Additionally, each piece was hung at wheelchair height and many had tactile elements as well as a motion-activated sensor that provided a verbal description of the art for anyone who walked by; a creative alttext walk-through of the show was produced by artist/contributor Shannon Finnegan. Bojana greeted visitors to the show dressed as her longstanding alter ego, Princess Leia from Star Wars, accessorizing the white costume and distinctive Princess Leia wig with her white cane. Coklyat used her presence as this character from “a galaxy far, far away” to good effect. She repurposed this heroic moxie-filled female rebel from popular media to remind us that a resistant, creative, alternative crip imaginary is indeed possible, demonstrating how a hacking aesthetic and assistive media can make that inclusive universe an actuality, at least briefly. A few days later, at what American television calls “the upfronts,” when major networks announce their anticipated projects for the fall season, a new comedy, Everything’s Gonna Be Okay, got attention as a new show in development, featuring a teen with autism who’s (finally!) played by an actress on the spectrum, Kayla Cromer. Kayla’s comments on a panel promoting the show make the essential point that resonates throughout this very welcome volume. Honestly, people with a difference, we’re fully capable of portraying our own type and we deserve that right. With so many changes in the industry right now, why not now? Just give us our chance. Include us. We can do this.18

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This Companion to Disability and the Media is a scholarly response to her call to action, taking us on “the ramp less traveled”19 by reframing many of the taken-for-granted parameters of daily life, as thinking through the lens of disability media worlds so often does.

Notes 1 Sami Schalk, Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction (Durham, NC: Duke University Press, 2018). 2 Elizabeth Ellcessor and Bill Kirkpatrick, eds., Disability Media Studies (New York: New York University Press, 2017). 3 Gerard Goggin and Chris Newell, Digital Disability: The Social Construction of Disability in New Media, Critical Media Studies (Lanham, MD: Rowman & Littlefield, 2003); Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010); Katie Ellis and Gerard Goggin, Disability and the Media (Basingstoke, UK: Palgrave Macmillan, 2015); Katie Ellis and Mike Kent, Disability and New Media (London: Routledge, 2013); Katie Ellis and Mike Kent, eds., Disability and Social Media: Global Perspectives (London: Routledge, 2016). 4 Elizabeth Ellcessor, Restricted Access: Media, Disability and the Politics of Participation (New York: New York University Press, 2016). 5 David Mitchell and Sharon Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2001). 6 Me Before You, directed by Thea Sharrock (London/Los Angeles, CA: Warner Brothers, 2016), motion picture. 7 Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008: 114–116). 8 Lawrence Carter-Long, “A Manifesto: Where Have You Gone, Stephen Dwoskin? On Disability Film,” Film Quarterly 72, no. 3 (Spring 2019): 26–29. 9 Mara Mills and Jonathan Sterne, “Afterword II: Dismediation—Three Proposals, Six Tactics,” in Disability Media Studies, ed. Elizabeth Ellcessor and Bill Kirkpatrick (New York: New York University Press, 2017), 365–378. 10 Mills and Sterne, “Afterword II: Dismediation,” 366. 11 See Faye Ginsburg, “Disability in a Digital Age,” in Digital Anthropology, ed. Heather Horst and Daniel Miller (London: Berg, 2012), 101–126; Faye Ginsburg and Rayna Rapp, “Disability Worlds,” Annual Review of Anthropology 42 (2013): 53–68. 12 ReelAbilities Film Festival: New York, accessed May 24, 2019, https://reelabilities.org/newyork/about/ #about. 13 Gurrumul, directed by Paul Damien Williams (Richmond, Vic: Madman Films, 2018), documentary, www. madmanfilms.com.au/gurrumul. 14 “U-n-r–Unrealistic,” Speechless, Season 3, Episode 22, directed by Bill Purple, aired April 22 (US: ABC, 2019), television series episode, https://abc.go.com/shows/speechless. 15 Naveen Kumar, “Ryan O’Connell Is Revolutionizing Queer, Disabled Representation on TV,” them, April 11, 2019, www.them.us/story/ryan-oconnell-special-interview 16 Ryan O’Connell quoted in Ilana Kaplan, “Ryan O’Connell Is Netflix’s Most Special New Star,” GQ, April 15, 2019, www.gq.com/story/ryan-oconnell-is-netflixs-most-special-new-star 17 Crip Imponderabilia, accessed May 24, 2019, http://cripimponderabilia.com. 18 Kayla Cromer quoted in Shaun Heasley, “Actress with Autism Starring in New TV Show,” Disability Scoop, May 17, 2019, www.disabilityscoop.com/2019/05/17/actress-autism-starring-tv-show/26641 19 “The Ramp Less Traveled” (conference event, Getting Real ’18, Los Angeles, CA, September 27, 2018), https://sites.grenadine.co/sites/documentary/en/gettingreal18/schedule/387/The+Ramp+Less+Traveled.

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INTRODUCTION Disability and Media—An Emergent Field Katie Ellis, Gerard Goggin, Beth Haller and Rosemary Curtis

Introduction The intersection of disability and mass media is resonating as a crucial topic in the modern world, against the backdrop of a vast expansion of research and publications on disability across many scholarly disciplines. Media, of course, is key to this overdue emergence of disability as central to academic research. Media and communication directly affect the lives of the approximately 15–20 percent of the world’s population who live with disability.1 In particular, the media help shape a range of economic, political, social, cultural, technological and attitudinal issues related to disability, something recognized internationally via the United Nations in the early 1990s: The media can influence values and attitudes … Generating awareness of the lives, experiences, talents and contributions of disabled persons in an integrated setting is important for providing disabled persons with highly visible role models and for changing negative stereotyping of disabled persons by the media where this happens.2 Subsequently, such international sentiments have been bolstered by the 2006 UN Convention on the Rights of Persons with Disabilities (CRPD), which provides a human rights framework and the potential of international law for encouraging deeper understanding and reforms of information, communication and media to underpin social participation, equality and justice for people with disabilities. A number of international organizations now recognize the key role of media in influencing the place of people with disability in the modern world. For example, the International Labour Organization has a media guide that reflects that: How women and men with disabilities are portrayed and the frequency with which they appear in the media has enormous impact on how they are regarded in society … Portraying women and men with disabilities with dignity and respect in the media can help promote more inclusive and tolerant societies … and stimulate a climate of nondiscrimination and equal opportunity.3 Thus, all forms of media are at the heart of an overdue and incomplete revolution underway in disability and society. Many aspects of the worldwide disability experience occur in mass media, whether via representation of disability in television, film, news or social media, via a disability

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angle to participatory online cultures, crowd-sourcing or through the new attention paid to disability in media sport––to mention only a few of many areas. Disability in the media is now situated on a vibrant global stage, with much more access to media content and creation by citizens with disabilities worldwide. Extensive libraries of films/programs including fiction and nonfiction titles by and about people with disabilities can be accessed through subscription services such as Netflix, available in 190 countries; YouTube can be navigated in a total of 80 different languages (covering 95 percent of the Internet population). In addition to access to global content, video-making technology readily available in smartphones and lower-cost digital cameras allow people with disabilities to create and upload programs to YouTube or submit to the growing number of disability film festivals across the globe. What is evident is that how the media frames, circulates and enacts disability for news, entertainment and online audiences directly affects many of our central ideas and beliefs. In this sense, disability, like class, inequalities, race, sexuality, gender and other categories, potentially affects everyone.

Disability and Media in Research and Teaching The origin of work in disability and media stretches back some decades.4 As a research topic, it appears in different disciplines and forms from the 1970s onwards. In some parts of the world such as the United States and United Kingdom, the emergence of research and teaching on disability and media has been documented and useful signposts and discussions exist. Early research can be found in a variety of journals and disability rights publications, everything from policy studies journals to the emerging disability studies-focused journals. Two major disability studies journals were founded in the United States and United Kingdom in the 1980s—Disability, Handicap & Society in 1986 in the United Kingdom (now called Disability & Society) and the US-based Society for Disability Studies academic journal Disability Studies Quarterly in 1986. The Kentucky-based disability rights publisher Advocado Press published early research on disability in the US news media in 1990.5 A variety of disciplines created disability and media/communication streams. The Media and Disability Interest Group of the Association for Education in Journalism and Mass Communication (AEJMC) in the United States began in 1990 and had its first interest group sessions in 1993 (it was in discontinued in 2007 due to falling numbers of conference submissions).6 The US National Communication Association (NCA) started a Disability Issues Caucus in 1997, and it still exists today. In terms of the use of media and disability scholarship in university classrooms, a number of disability studies courses that include media have been developed in the United States and Canada. Syracuse University in the United States keeps track of disability studies programs in North America and lists 42 that have disability studies programs (majors, minors, graduate programs).7 Many of these programs now include courses focused on media and disability, either fully or partially. They range from “Understanding Disability through Mass Media” at Towson University (USA) to “Disability, Media and Madness” at Western University (Canada)8 to New York University’s course “Disability, Technology and Media.”9 British universities also offer several disability studies programs, such as the disability studies bachelor’s degree at the Sheffield Hallam University, where students are guided by scholar Rebecca Mallet, who researches disability in comedy and humor.10 The absence of the Internet and email meant little media and disability research was exchanged worldwide well into the 1990s (at least in the anglophone context). But some disability culture and media content did make it outside the United States in the 1990s through the David Mitchell and Sharon Snyder documentary, Vital Signs: Crip Culture Talks Back,11 because it went to film festivals internationally. The film features conversations with disability studies scholars, disabled performers and disability activists, which allowed audiences to engage with a discussion of disability as a political and social identity.12 2

Introduction

In the 2000s, disability and media work began to occur across various other scholarly and research traditions and groups, such as literature,13 cultural studies,14 performance studies,15 socio-legal studies, sociology, anthropology,16 Internet studies and many other areas. Digital technology has been an especially rich site of interdisciplinary work, crossing different fields and traditions, as well as articulating conversations and engagements across research and practice.17 In one sense, this kind of variety and breadth is entirely characteristic of disability research and conversations, and supports and extends interdisciplinary and integrative scholarly work. Consider, for instance, various exciting works that have extended the range and repertoire and horizons of disability and media research, such as: Rosemarie Garland-Thomson’s 1997 Extraordinary Bodies and 2009 Staring;18 the work of Mitchell and Snyder, especially the 2000 Narrative Prosthesis and 2006 Cultural Locations of Disability;19 various Petra Kuppers’ books including her 2015 Studying Disability Arts and Culture;20 Graham Pullin’s 2011 Design Meets Disability;21 Tanya Titchkosky’s 2011 The Question of Access;22 and, more recently, Bree Hadley and Donna McDonald’s 2019 Routledge Handbook of Disability Arts, Culture, and Media.23 In a positive turn, we observe that in the media and communications associations with which we are familiar, there is more frequent appearance of disability-conceived and related work, and often dedicated panels and streams. In intersectional approaches, across gender, sexuality, race, class and other areas, disability increasingly finds a productive, if often challenging, set of alliances and combinations. At a variety of levels, most academic disciplines now embrace disability studies in their scholarly activities and teaching. Exciting, cutting-edge research is being undertaken that stands to transform the field. Despite such developments, for many years the place of disability work has been unclear in media and communication studies and associated disciplines such as cultural studies, sociology, Internet, digital media and mobile media studies. Papers on disability and media have increasingly appeared, published across a wide range of journals in the field. However, we have often felt that our work and that of other scholars working on media and disability falls between two areas: stranded between, on the one hand, the central focus of disability studies journals (where reviewer expertise in media and communications can be difficult to find and tap into) and, on the other hand, media and communications journals (where similarly knowledge of disability among editors, reviewers and readers has tended to be uneven). In other ways also in media and communication studies the emergence of disability has been slow to arrive on the research as well as teaching agenda. However, disability and media research has emerged with considerable momentum and richness in the past few years, indeed accelerating as this Companion has been underway. Now we find books on disability and media regularly appearing, authored by emerging scholars of considerable talent, and established scholars have turned their attention to disability and media. All in all, we find hopeful signs that disability has finally “arrived” in the academic world and can now be accepted as an integral element of thinking about, and doing, media scholarship. In this context, we hope this Companion will be a useful guide to key areas in current and future research agendas, as well as showcasing a range of exciting international work in the field. Here this reference work can be read alongside key books that offer important perspectives on the field such as Beth Haller’s pioneering Representing Disability in an Ableist World: Essays on Mass Media (2010),24 Katie Ellis and Gerard Goggin’s Disability and the Media (2015),25 Elizabeth Ellcessor and Bill Kirkpatrick’s Disability Media Studies (2017)26 and Mike Kent and Katie Ellis’ four-volume major works compilation, the 2017 Disability and the Media.27 In addition, there are a wide range of other books and special issues of journals on aspects of disability and media that can provide specific itineraries, in-depth exploration and points of engagement and debate.28

User’s Guide to Disability and Media Companion We are pleased to present this Companion as a balance between distinguished, established and leading scholars, with the emerging, next-generation researchers. In disability and media studies 3

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especially, it is these emerging scholars who are often producing the cutting-edge and creative work, typically doing so in conditions of precarity and uncertainty in their careers and work and often with an uncertain sense of how their efforts will count or the impact their research will have. In addition, a key aspect of the Companion is the inclusion of contributions from writers and practitioners, who have invaluable expertise and perspective on disability and media. Much of the knowledge resides with those deeply engaged in making, producing and interpreting media across industry, community, policy, professional, amateur, user and other settings. Shaped by these ideas, and our own contexts, we were delighted to assemble a rich showcase of the state of the art in disability and media research and practice. Part I of this collection “Imagining and Representing Disability” addresses the discipline’s focus on representation across a variety of media forms including newspapers, advertising, television, film, magazine articles, political cartoons, literature and speculative media. Traversing Australian newspapers in the 1830s to traditional and digital media in Africa and India to contemporary US television programming and Hollywood drama, the chapters cover a wide range of both problematic and progressive disability representations. The first three chapters address the news. Beginning with Tanya Titchkosky’s exploration of the ways readers of news media are invited into a restricted imaginary of disability as an inherently difficult life via newspaper headlines and taglines. Nookaraju Bendukurthi and Usha Raman’s chapter extends the notion of disability as newsworthy with a political economy reading of disability in Indian news media as having use value that translates as exchange value in the market. In the following chapter, John Gilroy, Jo Ragen and Helen Meekosha employ Martin Nakata’s Indigenous standpoint theory and decolonizing frameworks to deconstruct and analyze representations of “disabled” Indigenous people in mainstream newspapers during the first 100 years of the Australian press from 1830. The focus shifts to advertising in Ella Houston’s chapter “Featuring Disabled Women in Advertisements: The Commodification of Diversity?” Drawing on the reactions from a small sample of women with mobility impairments, Houston analyzes the representations of women with impairments in UK and US advertisements from a feminist disability studies perspective. Following this Jonathan Bartholomy’s chapter offers a comparative analysis of different media imaginations of the key disability personality Mark O’Brien. The chapter examines the narratives about disability that are utilized in multiple media adaptations of O’Brien’s life: The Sessions, Breathing Lessons and “On Seeing a Sex Surrogate.” The next two chapters maintain the focus on disability in film while incorporating interdisciplinary perspectives. Alison Wilde synthesizes disability studies, mad studies and film studies to examine and compare the narrative and visual techniques used in Greenberg and Silver Linings Playbook, while Sally Chivers examines the intersection between aging and disability in recent cinematic depictions of dementia, with Still Alice (2014) as a central focus. Beth Haller then highlights authentic disability representation on US television as a social justice issue that pushes back against the aesthetic disqualification of disability. In the following chapter Tatiane Hilgemberg, Katie Ellis and Madison Magladry return the focus to the commercial potentials of disability representation in newspapers via a comparative analysis of representations of Paralympic athletes appearing in popular Australian and Brazilian newspapers during the 2012 Paralympic Games. The final three chapters in Part I explore literary and visual representations of disability in particular genre imaginings. Focusing on characters Tyrion and Penny, Mia Harrison’s chapter investigates how George R. R. Martin’s fantasy series A Song of Ice and Fire is representative of both the weaknesses of fantasy literature and its potential as a champion of strong disability representation. Following this, Beth Haller investigates the intersection of disability metaphors within US newspapers political cartoon practices via analysis of selected US political cartoons from the 4

Introduction

nineteenth century to 2015. Part I concludes with Sami Schalk’s chapter that argues for a consideration of the non-realist context of speculative media when interpreting these representations in regard to (dis)ability and race. Part II of the Companion, “Audience, Participation and Making Media,” focuses on the ways people with disability can intervene as media researchers, teachers, producers and audiences. This section begins with Katie Ellis’ investigation of social and cultural model approaches to disability in popular culture. Recognizing that these disciplines tend to approach the topic from a production perspective, Ellis foregrounds the role of consumption and critical engagement as a way to engage with the pleasures of popular culture. Extending the focus on consumption in the following chapter, Fiona Whittington-Walsh and her collaborators, Kya Bezanson, Christian Burton, Jaci MacKendrick, Katie Miller, Emma Sawatzky and Colton Turner, discuss the formation and activities of the Bodies of Film Club. This club, which comprises of a principal researcher, research assistant and five young adults who identify or have been identified with a developmental or intellectual disability, meet to analyze films with a disability theme by reflecting on their own lived experience, creating meaningful critical inquiry. The next three chapters focus on disability media in developing countries. Taking Africa as its case study, Olusola Ogundola’s chapter presents a comprehensive picture of what narratives shape disability stories when they make it onto the news agenda; why disability issues are being ignored; and how to make right the wrongs of several decades of “disability marginalization” in the news media. Patricia Chadwick’s chapter adds to these debates with a focus on Afghanistan, China and Somalia. These case studies reveal the ways people with disabilities produce media to change attitudes about disabled people, advance disability civil rights and affect government policy in these countries. Kimberly O’Haver’s chapter returns the focus to Africa with an exploration of the use of social media and digital technology by members of the African Youth with Disabilities Network (AYWDN). Following this, Laurence Parent draws on her own experiences and observations as a disabled filmmaker, graduate student and activist in Montréal, Canada to explore some of the possibilities offered by mobile videos for challenging ableism and share some reflections on the pitfalls. Patricia Almeida’s chapter then further investigates the potential for positive change via disability engagement in and with the media. The chapter explores how Pages of Life (Páginas da Vida), a Brazilian television telenovela (soap opera), used a plot about a child with Down syndrome to further the discussion of inclusion of children with disabilities in public education in Brazil. Véro Leduc’s chapter concludes Part II with an investigation of the production of It Fell on Deaf Ears, a graphic novel in Québec Sign Language. Reflecting on agency and digital media, Leduc asserts that the limits and uses of media technology must be pushed in order to foster the development of signed knowledge and Deaf becoming. Media and communications have taken on a heightened importance in social life, especially with the advent of Internet, mobile and digital media and communications. Work on disability has especially developed in relation to these facets of the field, perhaps also because of the unique and generative ways that disability works in relation to media and communication technology. These concerns are taken up in Part III, “Media Technologies of Disability.” Each of the nine chapters examines the notion that digital exclusion has significant social consequences for people with disability. Similarly that digital inclusion and accessibility has positive benefits. Jennifer Cole and Jason Nolan begin with an exploration of the genesis and maturation of the online community GimpGirl. The community that seeks to transcend the infantilizing oppression of medical and institutional models of disability has moved across many ICTs, from MOOs to Second Life, Blogs to Facebook, as the interest and needs of the community have grown and changed, charting paths for others to explore. 5

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The next chapter turns to the issue of web accessibility. Using policy documents, web archives and interviews, Elizabeth Ellcessor traces the processes of negotiation that characterized the development of WCAG 1.0, the US Section 508 standards, WCAG 2.0 and recent related updates to situate accessibility standards as an infrastructure of possibilities. Following this, Jonathan Lazar and Brian Wentz join calls that the Web be fully accessible and usable for people with disabilities. Their chapter provides a framework for understanding technology accessibility, the challenges that are experienced by blind individuals as they use the Web and an overview of the international laws and policies that intersect with this topic. Mike Kent then explores the complicated relationship between social media and disability. Social media has provided opportunities for participation, commerce and political activism, as well as exclusion and inaccessibility. Meryl Alper continues the focus on communication with an investigation of an augmentative and alternative communication system (AAC) as a form of mobile communications technologies. She calls for consideration of all mobile communication as existing along a spectrum between augmentations and alternatives to embodied oral speech. Lorenzo Dalvit furthers this argument via an investigation of mobile phone use by visually impaired people from different cultural, linguistic and socioeconomic backgrounds in Grahamstown, a small town in the Eastern Cape Province of South Africa. Dalvit finds that smartphones enable independent participation by disabled people as unobtrusive assistive devices and as popular symbols of social inclusion. Wayne Hawkins then brings together the focus on accessibility and the influence of government policy in an analysis of the video-on-demand “streaming wars” taking place in Australia. Hawkins illustrates the ways hard-won access features across terrestrial broadcast platforms are being lost with these disruptive broadband-enabled services. Continuing the focus on accessible design, Jerry Robinson identifies cultural, political, economic and other disabling factors embodied in accessible technology products and services that have been rectified through selfdirected life hacking activities. Finally, Eleanor Sandry’s chapter turns to the example of autonomous care robots and semi-autonomous assistive robots as technologies that have the potential to help support people with disabilities in their everyday lives. Sandry proposes an ethical approach, which acknowledges the importance of interdependence and relational autonomy, as well as flexible human–robot communication, relations and control as the key to realizing this potential. The final part of the book, “Innovations, Challenges and Future Terrains of Transformation,” revisits several key themes and media addressed throughout the collection and looks to future research directions. Many of the chapters situate their research as an understudied area of disability media analysis and offer frameworks for future analysis. Returning to the issue of news with which we started this Companion, Chelsea Temple Jones critically unpacks the taken-for-granted rationale that disability beats in journalism lead to positive, rights-based disability representation. Next, Josh Loebner addresses the inclusion of people with disabilities in advertising, offering a framework to bring disability inclusion into creative conversations and campaigns. Shawn Burns’ chapter uses the case study of the BBC’s Ouch and the ABC’s Ramp Up websites to explore the frail links between disability advocacy and mainstream media and the place of self-advocacy journalism in the changed media and journalism landscape. Following this, Carla Rice and Eliza Chandler interrogate how representation of disability informs understandings of disabled people through a reading of representations in and audience response to the social media account Humans of New York. Filippo Trevisan’s chapter discusses how Internet-based media have become central to disability rights advocacy in recent years and provides useful pointers for further reading and research on this important yet under-studied topic. Katie Ellis and Melissa Merchant refocus analysis to address the issue of employing people with disability in media-related industries. The chapter argues that entering the media industry is challenging for people with disability, largely as a result of existing prejudices to disability and the notion that the media sector is fast paced. The final 6

Introduction

chapter in the book, by David Adair and Paul Harpur, interrogates the way copyright law has supported a global publishing regime in a way that has delivered uneven levels of access to print materials. The chapter argues that innovations in public and non-profit sector strategic management can assist in a much-needed recalibration and build the required consensus.

Conclusion As mentioned, research in disability studies can be found in disciplines as diverse as literary studies, performance studies, sociology, social policy, education and social work. Disability often figures in interdisciplinary research and collaborations worldwide. Disability and media scholarship carries significant intellectual and cultural cachet, and capital disability has been attracting growing attention internationally29 and this volume joins that vibrant trajectory. As much as possible, we have aimed for the The Routledge Companion to Disability and Media to be international in its scope and orientation. We understand the barriers researchers and graduate students worldwide face when they are not nurtured and supported by their universities, national university and research innovation systems, or by international scholarly associations and research collaborations. The scholarly supports are many times inaccessible as well. Much of this amounts to, and is underpinned, by the geopolitics of research and knowledge––and the persistence of disabling relations of power among, within and transversally across countries. However, navigating differences in development of research, theory, university infrastructures and support for disability studies, research and engagement programs, we still found commonalities that solidify media and disability scholarship as its own sub-discipline within media studies. We believe the work presented here registers many key trajectories and illustrates the momentum for more international work on disability and media in the future. This volume is part of a larger story about this scholarship finally being taken seriously by researchers, educators and those with a stake and interest in the area and its implications. Ultimately, the future of the field, its intellectual adequacy, research rigor and relevance will build from a volume like this one. For disability and media research vitality to continue, we know from working with this group of dedicated writers and researchers that a genuinely international constitution of the field will be essential.

Notes 1 While dated, the most authoritative source providing an overview of international disability statistics remains the 2011 World Report on Disability published by the World Health Organization and the World Bank, www.who.int/disabilities/world_report/2011/report/en. For discussion of the issues involved in measuring, defining and comparing disability data see WHO and World Bank, World Report on Disability 2011, 21–53, www.who.int/disabilities/world_report/2011/report/en. 2 United Nations, Secretary-General, “Implementation of the World Programme of Action concerning Disabled Persons [A/49/435]: Part 2, Measures for the Medium Term” (United Nations, 1994–1995), 22.4, 22.7, www.un.org/development/desa/disabilities/implementation-of-the-world-programme-of-action-con cerning-disabled-persons-a49435-part-2.html. 3 International Labour Organization (ILO), Reporting on Disability: Guidelines for the Media (Geneva: ILO, 2015), www.ilo.org/skills/pubs/WCMS_127002/lang–en/index.htm. 4 Pioneering work on disability and media includes: Alan Gartner and Tom Joe, eds., Images of the Disabled, Disabling Images (New York: Praeger, 1987); Lauri E. Klobas, Disability Drama in Television and Film (Jefferson, NC: McFarland, 1988); Guy Cumberbatch and Ralph M. Negrine, Images of Disability on Television (London: Routledge, 1992); Jack A. Nelson, The Disabled, the Media, and the Information Age (Westport, CT: Greenwood Press, 1994); Martin Norden, The Cinema of Isolation: A History of Physical Disability in the Movies (New Brunswick, NJ: Rutgers University Press, 1994); the British Film Institute’s publication, Framed: Interrogating Disability in the Media, ed. Ann Pointon and Chris Davies (London: BFI, 1997); Paul Darke, “The Cinematic Construction of Physical Disability as Identified Through the Application of the

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5 6 7 8 9 10

11 12

13

14 15 16

17

18

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Social Model of Disability to Six Indicative Films Made Since 1970” (PhD thesis, University of Warwick, UK, 1999), www.outside-centre.com/darke/paulphd/content.htm; and Dawn Braithwaite and Teresa Thompson’s edited collection, Handbook of Communication and People with Disabilities: Research and Application (Hillsdale, NJ: Lawrence Erlbaum Associates, 2000). For more information, see https://en.wikipedia.org/wiki/John_Clogston. Email correspondence between Beth Haller and Jennifer McGill at AEJMC headquarters, March 11, 2019. Syracuse University, Disability Studies, “Academic Programs in Disability Studies,” accessed March 18, 2019, http://disabilitystudies.syr.edu/programs-list. King’s University College, Western University, “Disability Studies Courses Offered,” accessed March 20, 2019, www.kings.uwo.ca/academics/disability-studies/disability-studies-courses-offered. NYU Steinhardt | Media, Culture, and Communication, accessed March 20, 2019, “Disability, Technology and Media,” https://steinhardt.nyu.edu/mcc/undergraduate/courses/MCC_UE_1026. Sheffield Hallam University, “Disability Studies,” accessed March 20, 2019, www.shu.ac.uk/research/special isms/cultural-communication-and-computing-research-institute/what-we-do/projects/communicationmedia-and-culture/disability-studies-at-sheffield-hallam-university. Vital Signs: Crip Culture Talks Back, directed by David Mitchell and Sharon Snyder (New York: Fanlight Productions, 1995), http://icarusfilms.com/fn-vital. Sharon L. Snyder and David T. Mitchell, “‘How Do We Get All These Disabilities In Here?’ Disability Film Festivals and the Politics of Atypicality,” Revue Canadienne d’Études cinématographiques/Canadian Journal of Film Studies 17, no. 1 (2008): 11–29. See, for instance, the Modern Language Association (MLA) disability group, accessed March 20, 2019, www.mla.org/About-Us/Governance/Committees/Committee-Listings/Professional-Issues/Committee-onDisability-Issues-in-the-Profession. See, for instance, the excellent Journal of Literary & Cultural Disability Studies, established in 2007. Among other works noted elsewhere in this chapter, see Carrie Sandahl and Philip Auslander, eds., Bodies in Commotion: Disability and Performance (Ann Arbor: University of Michigan Press, 2005). In anthropology and media, see the important work by Faye Ginsburg including her “Disability in the Digital Age,” in Digital Anthropology, ed. Heather Horst and Daniel Miller (London: Berg), 101–126, and her paper with Rayna Rapp, “Disability Worlds,” Annual Review of Anthropology 42 (2013): 53–68. See also the work by Tom Boellstorff, especially on disability in the virtual world Second Life in papers such as “The Opportunity to Contribute: Disability and the Digital Entrepreneur,” Information, Communication & Society 22 (2019): 474–490; Tom Boellstorff, “The Ability of Place: Digital Topographies of the Virtual Human on Ethnographia Island,” Current Anthropology, forthcoming; Faye Ginsburg and Rayna Rapp, “Disability/Anthropology: Rethinking the Parameters of the Human,” Introduction to a Special Supplement, Current Anthropology, forthcoming. Among many studies of disability and technology, see Alan Roulstone’s pathbreaking Enabling Technology: Disabled People, Work, and New Technology (Buckingham, UK, and Philadelphia, PA: Open University Press, 1998), and his authoritative Disability and Technology: International and Interdisciplinary Perspectives (Houndmills, UK: Palgrave Macmillan, 2016); Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowan & Littlefield, 2003); Paul T. Jaeger, Disability and the Internet: Confronting a Digital Divide (Boulder, CO: Lynne Rienner, 2010); Katie Ellis and Mike Kent, Disability and New Media (London and New York: Routledge, 2011); Edward Steinfeld and Jordana Maisel, Universal Design: Creating Inclusive Environments (Hoboken, NJ: Wiley, 2012); Peter Blanck, eQuality: The Struggle for Web Accessibility by Persons with Cognitive Disabilities (Cambridge, UK: Cambridge University Press, 2014); Meryl Alper, Digital Youth with Disabilities (Cambridge, MA: MIT Press, 2014); Jonathan Lazar, Daniel F. Goldstein and Anne Taylor, Ensuring Digital Accessibility Through Process and Policy (Waltham, MA: Morgan Kaufmann, 2015); Elizabeth Ellcessor, Restricted Access: Media, Disability, and the Politics of Participation (New York: New York University Press, 2016); Meryl Alper, Giving Voice: Mobile Communication, Disability, and Inequality (Cambridge, MA: MIT Press, 2017); Jonathan Lazar and Michael Stein, eds., Disability, Human Rights, and Information Technology (Philadelphia: University of Pennsylvania Press, 2017); Paul Harpur, Discrimination, Copyright, and Equality: Opening Up the E-Book for the Print Disabled (Cambridge, UK: Cambridge University Press, 2017); Mara Mills, On the Phone: Deafness and Communication Engineering (Durham, NC: Duke University Press, 2019). By Rosemarie Garland-Thomson, see Freakery: Cultural Spectacles of the Extraordinary Body (New York: New York University Press, 1996), Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997) and Staring: How We Look (Oxford: Oxford University Press, 2009). See Sharon L. Snyder and David Mitchell, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2000), Cultural Locations of Disability (Chicago: University of

8

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20

21

22 23 24 25 26 27 28

29

Chicago Press, 2006) and their edited volume The Body and Physical Difference: Discourses of Disability (Ann Arbor: University of Michigan Press, 1997). As well as Studying Disability Arts and Culture (London: Palgrave Macmillan, 2015), other books by Petra Kuppers include Disability and Contemporary Performance: Bodies on Edge (New York: Routledge, 2003) and Disability Culture and Community Performance: Find a Strange and Twisted Shape (London: Palgrave Macmillan, 2011). Graham Pullin, Design Meets Disability (Cambridge, MA: MIT Press, 2011). Design is a fertile and hotly debated area of interdisciplinary and engaged work, with other key texts including: Jos Boys, Doing Design Differently: An Alternative Handbook on Architecture, Dis/ability, and Designing for Everyday Life (London and New York: Routledge, 2014); Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press, 2017). Tanya Titchkosky, The Question of Access: Disability, Space, Meaning (Toronto: University of Toronto Press, 2011). Bree Hadley and Donna McDonald, eds., Routledge Handbook of Disability Arts, Culture, and Media (London and New York: Routledge, 2019). Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). Katie Ellis and Gerard Goggin, Disability and the Media (London: Palgrave Macmillan, 2015). Elizabeth Ellcessor and Bill Kirkpatrick, eds., Disability Media Studies (New York: New York University Press, 2017). Katie Ellis and Mike Kent, eds., Disability and the Media, 4 vols. (London and New York: Routledge, 2017). The expanding area of disability and media publications includes: Sally Chivers and Nicole Markotić, eds., The Problem Body: Projecting Disability on Film (Columbus: Ohio State University Press, 2010); Sally Chivers, The Silvering Screen: Old Age and Disability in Cinema (Toronto, ON: University of Toronto Press, 2011); Lawrence C. Rubin, ed., Mental Illness in Popular Media: Essays on the Representation of Disorders (Jefferson, NC: McFarland, 2012); Angela M. Smith, Hideous Progeny: Disability, Eugenics, and Classic Horror Cinema (New York: Columbia University Press, 2012); Marja Mojk, ed., Different Bodies: Essays on Disability in Film and Television (Jefferson, NC: McFarland, 2014); Debbie Rodan, Katie Ellis and Pia Lebeck, Disability, Obesity, and Ageing: Popular Media Identifications (Farnharm, UK: Ashgate, 2014); Katie Ellis, Popular Culture and Disability: Focusing Passion, Creating Community, and Expressing Defiance (Farnham, UK: Ashgate, 2015); Daniel Jackson, Caroline E. M. Hodges, Mike Molesworth and Richard Scullion, eds., Reframing Disability? Media, (Dis)Empowerment, and Voice in the 2012 Paralympics (New York: Routledge, 2015); Katie Ellis, Disability Media Work: Opportunities and Obstacles (London: Palgrave Macmillan, 2016); Katie Ellis and Mike Kent, eds., Disability and Social Media: Global Perspectives (London and New York: Routledge, 2017); J. L. Schatz and Amber E. George, eds., The Image of Disability: Essays on Media Representations (Jefferson, NC: McFarland, 2018); Katie Ellis, Disability and Digital Television Cultures: Representation, Access, and Reception (New York: Routledge, 2019). Everyone will have their own sense of what counts as theory, especially disability theory. We would include works such as: Michael Oliver, Understanding Disability: From Theory to Practice (Houndmills, UK: Palgrave Macmillan, 1996); Mairian Corker and Tom Shakespeare, eds., Disability/Postmodernity: Embodying Disability Theory (London: Continuum, 2002); Robert McCruer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006); Tobin Sieber, Disability Theory (Ann Arbor: University of Michigan Press, 2009); Fiona Kumari Campbell, Contours of Ableism: The Production of Disability and Abledness (London: Palgrave Macmillan, 2009); Dianne Pothier and Richard Delvin, eds., Critical Disability Theory: Essays in Philosophy, Politics, Policy and Law (Vancouver and Toronto: UBC Press, 2006); Dan Goodley, Bill Hughes and Lennard Davis, eds., Disability and Social Theory (Houndmills, UK: Palgrave Macmillan, 2012); Teodor Mladenov, Critical Theory and Disability: A Phenomenological Approach (New York: Bloomsbury, 2014); Dan Goodley, Dis/ability Studies: Theorising Disablism and Ableism (New York: Routledge, 2014); Barbara Arneil and Nancy J. Hirschmann, eds., Disability and Political Theory (Cambridge, UK: Cambridge University Press, 2014); Elizabeth Barnes, The Minority Body: A Theory of Disability (Oxford: Oxford University Press, 2016); Ghosh Nandini, ed., Interrogating Disability in India: Theory and Practice (New Delhi: Springer, 2016); and Sarah Jacquette Ray and Jay Sibara, eds., Disability Studies and the Environmental Humanities: Towards an Eco-Crip Theory (Lincoln, NE: University of Nebraska Press, 2017).

9

PART I

Imagining and Representing Disability

1 DISABILITY IMAGINARIES IN THE NEWS Tanya Titchkosky

Introduction “Imagine disability; now imagine life with such a problem.” This trope, one that invites people to imagine disability as a problem, is an ordinary part of contemporary life. Making use of news articles and headlines that reproduce this trope, this chapter explores what it means to imagine disability in this way. Tracing how this disability imaginary is at work organizing how readers can expect disability and non-disability to fit together as newsworthy, the following pages will also explicate how “imagination” is best understood as a social phenomenon. While never totally alienated from the possibility of fantasy, imagination here refers to the interpretive character of perception as an “enworlded” phenomenon.1 Throughout, I will regard “imagination” as a complicated interpretive social action, potentially creative, but done always in relation to existing cultural conceptions and images; the products of imagination can be conceived as “imaginaries,” a kind of solidification of sense.2 I will show how “disability imaginaries” are enworlded as alienation incarnate—full of unexamined and unbendable assumptions regarding disability that nonetheless serve to support flights of fancy regarding normalcy. Treating imagination as that social activity that operates between engagement and alienation, between creativity and constraint, I aim to reveal what the invitation to imagine disability both “marks and mirrors.”3 By considering the grounds organizing the ordinary restrictive orders of perception, there arises the possibility of perceiving our lives with disability in new ways, perhaps breaking out of one way of finding disability newsworthy while breaking into others. Media representations of disability offers media producers and consumers an opportunity to reflect on the normative assumptions that ground these representations as well as a chance to perceive, know and do disability differently from how “society made us and believe us to be.”4 After revealing the contours of a disability imaginary common to Western news media, I end by exploring how to live with this imaginary in more vital ways. I do not, however, propose that a more realistic or normal imagery for disability be developed. As Eve Haque has shown, the “real” of media and its documented historical agents are full of imagined characters in need of explication.5 Exploring the limits of an alienated and, even, pathological imaginary is a way to open up the cultural assumptions behind this disability representation. Indeed, by exposing the social imaginaries at play in media accounts of disability, this chapter aims to encourage media producers to want to gain access to those social imaginaries informing even their most “realistic” accounts of disability so that they might produce more vibrant, expansive and complex

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representations of disability. To do so, however, requires that we first proceed with the assumption of life in disability and one way to do that is to regard media depictions of disability as a representational space that invites cultural critique. This chapter aims to reveal the products of imagination in new ways—representing a hybrid comingling of disability and non-disability reflective of the hope of an unexpected rupture of the ordinary in the social activity of media production and consumption.6

Imagine Disability; Now Imagine Life with This Problem Contemporary Western news media, invites readers, and not merely from time to time, to imagine disability. We read invitations such as imagine being deaf, blind, a wheelchair user; imagine feeling anxious, depressed or confused; imagine losing an arm, your memory or the ability to speak. This initial invitation serves to move the reader into another imaginative moment but one that can only read disability as the problem of normative disruption. Imagine disability while also imagining raising a child, going on a trip, going to work, preparing dinner or getting out of bed. Versions of this invitation are extraordinary enough to be narrated and to regularly appear within Western news media: Can you imagine changing a nappy with your TEETH? Disabled mother who can’t use her arms or legs reveals how she copes with two young children.7 Imagine getting through the day with no arms. That’s my life thanks to thalidomide.8 Can you imagine waking up every morning and doing what she did without being able to feel or move anything below your neck?9 Changing a diaper, washing dishes, getting through the day, are not the ordinary stuff of the news. Yet, such ordinary activities have suddenly and even dramatically become extraordinary and newsworthy. The reader, framed as non-disabled, is supposed to encounter disability as a problem that disrupts the flow of ordinary life and to find this interesting (even though it is easy and common to imagine that disability means only difficulty doing things). After all, these suppositions come into play and are at work in framing the request to “imagine disability as a problem, now imagine life as such.” Through this trope, readers are invited into a restricted imaginary—free to read disability, but only as a problem, a somewhat titillating disruption to the normal way of doing things. Ironically, restricted imaginaries have to restrict their own grounds of possibility (imagination) in order to operate. One way this is done is by imposing the fanciful belief in the singular view. But this is risky, for to imagine the singular meaning as allencompassing risks the opposite, that we imagine disability as more and other than we make it and believe it to be. Not only ordinary tasks such as washing dishes or changing diapers but also extraordinary ones, can be used to express a restricted imaginary. Readers are invited, for example, to imagine disability in the face of extraordinary feats, such as racing a car, running a marathon, skydiving, learning calculus, surviving in an inhospitable environment. Consider these examples: Imagine your life if you had a disability. How many things might you have to give up on? Walking? Sports? Now imagine you were a professional race car driver who suffered traumatic brain injuries. Medical professionals tell you, you will never recover, let alone drive again. Rick Bye must not have received the memo.10 14

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Calculus is never a picnic, but imagine if you couldn’t see the numbers on the board.11 Even for the fully able-bodied, the world can be a cruel and challenging place to navigate. In northwest Michigan, we know all too well about low wages, unemployment, underemployment and the zigzagging path to providing enough for yourself or your family. Imagine if, through no choice of your own, you were dealt an even harder card to play. For people with developmental disabilities in this region—and every other, for that matter —often times the impediment to independence and happiness is a lack of opportunity.12 Racing cars and doing calculus, like surviving in a cruel and challenging world, are extraordinary feats. Add disability and the extraordinary is made spectacular, moving unique skills from the register of the exceptional to that of the almost magical. Still, this transformation also includes framing the presumed reader as a non-disabled person who regards disability as a problem that disrupts the accomplishment of extraordinary feats. While it may be difficult to imagine driving a race car or learning calculus, it remains easy to imagine that to do these things while disabled would be difficult, if not impossible. Spectacular or ordinary, this trope posits disability as a condition that represents a lack of function; given this, things are difficult to do and given this, things will have to be done differently. This leads to what is perhaps the most perplexing matter of all—it hardly seems to be an imaginative act to call disability to mind as “difficulty doing things.” This disability imaginary is so ubiquitous that it seems to put the activity of imagination out of play. Indeed so ubiquitous is this imaginary, that it seems realistic and true. Nation states as well as the World Health Organization, for example, structure their surveys of disability with exactly the same conception: Do you or someone in your household have a physical condition or health condition … that reduces the amount or the kind of activity that this person can do?13 Activities are limited because of a long-term condition or health-related problem.14 A disability is an impairment that has a long-term, limiting effect on a person’s ability to carry out day-to-day activities.15 Any restriction or inability to perform an activity in the matter or within the range considered normal for a human being.16 Despite claims to using an updated and more social conception of disability—the International Classification of Functioning, Disability and Health—the World Report on Disability also makes use of the imaginary of difficulty doing things that results from a lack of function: According to the World Health Survey around 785 million (15.6 percent) persons 15 years and older live with a disability, while the Global Burden of Disease estimates a figure of around 975 million (19.4 percent) persons. Of these, the World Health Survey estimates that 110 million people (2.2 percent) have very significant difficulties in functioning.17 Given the ubiquity of this restrictive disability imaginary, along with the simultaneous naturalization of the notion that it is found in individuals who are understood to possess an inability to function in a way considered normal for a human being, how are we to make sense of this news 15

Tanya Titchkosky

media call to imagine disability? Perhaps, we can allow the lack of imagination involved in all this to disturb us a little while breaking into how disability figures in the social imaginary.

Disability and the Social Imaginary The cultural structuring of disability between the extraordinary and the ordinary has historically been given a detailed analysis by disability studies scholars.18 They have revealed a variety of dichotomies through which contemporary society gives shape to disability. Rosemarie GarlandThomson, for example, suggests that representations of disability can be understood through a four-part symbolic rhetoric making disability typically appear as the signifier of the wondrous, the sentimental, the exotic or the realistic.19 Other theorists, such as Ato Quayson,20 have suggested that disability is used to express nine categories of Othering, all the while producing what Michael Berube refers to as the “exceptional.”21 Disability as an exceptional category of persons has, as Beth Haller et al. show, typically served to represent medical power, heroic spirit, charity acts or human rights within the news media.22 Whether it is two, four, nine or more categories, these scholars remind us that within mainstream media, disability is encapsulated as a sign of something readily obvious insofar as it can be easily noticed and deployed to express a rather restricted set of meanings. The sheer expanse of human variation is made to take shape in a few limited forms readily called upon by the news media through the trope: “Imagine disability, now imagine life with this problem.” Regulating sameness and difference, this trope makes both appear more simple than they are. Sameness, then, is what the community has come to expect; while difference, wrapped in the shape of disability, is the unexpected—nonetheless caught within the singular meaning of the problem of lack of function and the need to do things differently. David Mitchell and Sharon Snyder tell us that the “ubiquitous presence of conventional disability narrative patterns tends to short-circuit public awareness about the social circumstances in which disability becomes enmeshed.”23 Like a stock character, disability appears in the news, capable of making the ordinary wondrous or the wondrous exotic, but the circumstances in which disability is enmeshed, namely, as an invitation to readers by the news media to imagine, typically remains beneath notice. Insofar as repetitive patterns of recognition short-circuit awareness, what might these patterns have done to imagination itself? Recall that the representation of disability as lack of function is deployed by nation states to produce rates of disability in their populations followed by programmatic regimes and other daily practices that also carry the same meaning, namely, that disability is lack of function resulting in difficulty. This version of disability relies on an alienated form of imagination since only difficulty and not the fullness of life is admitted into disability. As Rod Michalko reminds us, it is often the case that the only included version of disability is a conventional one and this conventional way of patterning the recognition of disability short-circuits any need not only for awareness but, more critically, for imagination.24 Instead, we encounter disability as a restricted set imaginary. Monitoring misconceptions of disability and their subsequent misrepresentations perpetuated by the news media is not, however, the only possible response.25 If “documenting damage” or “consciousness raising” are not alone sufficient to enact change,26 perhaps another option is to discern how this repetitive cultural practice of requesting people to “imagine disability, and now imagine life with such a problem” teaches us something about the “human imaginary” itself. The news media represents a cultural production tied to a normative order produced by the contemporary neoliberal capitalist societal structures. This means that the news media is a site for engaging the human imaginary and its use of disability, a site that might invite us to theorize imagination. To this end, let us turn back to the media’s request to imagine disability. 16

Disability Imaginaries in the News

Human Imaginary There are many theorists who draw out the social character of imagination and the production of human imaginaries.27 One explicit in his sociological sense of imagination, is Charles Taylor who says of the “modern social imaginary”: I am thinking rather of the ways in which people imagine their social existence, how they fit together with others, how things go on between them and their fellows, the expectations that are normally met, and the deeper normative notions and images that underlie these expectations.28 Taylor is suggesting that there is a kind of social function at the heart of the imaginative productive process—the play of social imaginaries reflects a version of existence where people, things, events are made to fit together; where things are thought to go on in integrated ways; ways that meet social expectations. Earlier, I suggested that the invitation to imagine disability requires a non-imaginative, that is, a rigidly structured and taken-for-granted way of bringing disability to mind. This is a bio-pathological version of disability—lack of function that leads to difficulty doing things considered normal for a human being—the bio-pathological remains not only unimaginative but also strictly and repetitively ordinary. Still, this might reflect what Taylor means by modern social imaginary since it reduces the life of disability to a question of function and cuts off any other possibilities while ordering how it is we think we fit together. Imagine disability materially inaugurates the reader’s expectation for an image of lack of function and functioning differently but, differently from what? Different from an imagined normalcy. Disability is made different from the norms and expectations that frame life as unconnected to difficulty pictured as normal life. Imagine disability can be read as actually an invitation to imagine normal life—its existence is imagined in contradistinction to a difficult life insofar as difficulty is continually symbolized by disability and vice versa. What requires a much more fanciful form of imagination is how disability and non-disability “fit together” in a social existence imagined as basically without disability. We are invited to imagine a normative order that is regarded as not difficult. Disability, in this sense, is a quantitative departure from non-difficulty; the more difficulty the more disability.29 Normalcy is “not difficult”—this is the imagined social existence, the mode by which things are meant to go on and through which people might fit together, and this is also how things are imagined for how they ought to be between people. But, what could be further from the truth! Not everything that is difficult is rooted in disability; not everything that is disability is rooted in difficulty. Still, the normative notion of existence as a smooth and easy relation between people might be the “deep” meaning behind the call to imagine disability. Placing all that can be imagined as difficult inside individuals with disabilities is reliant upon a taken-for-granted sense of everyday life as smooth, easy, trouble free, normal as it should be. Moreover, it is challenging to imagine disability as something other than difficultly in functioning and disability all but disappears if difficulty does. This invites us into the heart of a paradox—imagine disability—relies on a notion of disability based in an alienated form of imagination where the reader is asked to separate disability from one’s self, from one’s life, from existence.30 At the same time, imagine disability demands that we fit disability in as, and only as, the tumult of difficulty of doing things differently. Imagine disability and now imagine life with such a problem becomes an occasion to show the power of the normative fantasy that, at best, disability is the struggle to get back into the fold of doing things in an expected and smooth fashion. This struggle is conceived as detached from ordinary life lived by ordinary people since it is only individuals with impairments that need to do things in

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extraordinary ways and with great difficulty. The ironic non-imaginative notion of imagine disability launches the reader pell-mell into the imaginative moment—imagine that existence is not difficult but is instead smooth but if, and only if, one is normal enough to imagine and expect it to be so. These are the interpretive quandaries that come wrapped up in an invitation to imagine disability, quandaries that should make anyone involved in producing media depictions of disability want to uncover them further. Engaging this way of fitting disability and non-disability together is a new call on imagination. As Paul Gilroy puts it, “Our moral and political compass might profitably be reset by acts of imagination.”31 Imagine disability and non-disability reflecting the meaning of each other, now imagine what this means for the human imaginary with its life of normalcy.

Disability Imaginaries and Rethinking Normalcy Through his analysis of disability supports, Dan Goodley suggests that we can treat our practices with disability as “mirrors to” and “markers of” humanity.32 The folding of disability into a pathological imaginary becomes an invitation to gaze in the mirror and discern where the marks of humanity are made to (dis)appear, and to consider the confines of imagination that operate in a recognizably “human” way. Imagination is a term that can bring to mind the made up, the fanciful, the creative wanderings of individual psyches. However, the notion of imagination as an ephemeral individual creative wellspring needs to be conceived alongside the rather solid inescapable fact that imagination works through the already established words and deeds of culture, including its set imaginaries. Conceiving of imagination as a meeting point between the made and the really made up, as well as between alienation and engagement, permits us to encounter the invitation to imagine as an “enworlded phenomenon,”33 potentially tied to the disruption of the same or, even, to making something new. This enworlded sense of imagination brings together things, people and events with expectations of the normative order while also pulling things or people or events apart since we can imagine a different social existence. As a particular form of assemblage, the invitation to imagine disability both mirrors and marks the intersection of the already made and the really made up in the simultaneity of what is both repetitive and productive in the human imaginary. Given this, let us now return to the invitation to imagine: “Can you imagine waking up every morning and doing what she did without being able to feel or move anything below your neck?”34 The reader is asked to imagine something ordinary—waking up in the morning. But the reader is also invited to put this together with something extraordinary, namely, not being able to do things, to feel or move from the neck down. As we have already uncovered, the reader is invited to imagine waking up as lack of function causing difficulty. This serves to bring to mind the image that waking up and getting on with one’s day as disabled is filled with difficulty, which requires imagining that one should wake up to the day without a second thought. The reader is brought to this sense of normalcy by blocking the sense that getting on with one’s day always requires work, even while not disabled. Moreover, producing this image of disability required work: it required the work of re-presenting disability as such; to do whatever must be done in order to stay within the confines of this restricted social imaginary. The taken-for-granted nature of the work of everyday life can be left unnoticed by focusing on the obviousness of work only by those who are depicted as disabled. While the type of work is undoubtedly different between disabled and non-disabled people, readers have been delivered into the normative expectation to understand some people as if they alone embody difficulty since they mark a radically alienated form of existence. This difference, imagined pathologically, 18

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serves to alienate self from other, making difference into strangeness, while producing the sense that doing ordinary things is normally done without effort, without work. Imagine your life if you had a disability. How many things might you have to give up on? Walking? Sports? Now imagine you were a professional race car driver who suffered traumatic brain injuries. Medical professionals tell you, you will never recover, let alone drive again. Rick Bye must not have received the memo.35 With the pathological imaginary at play, disability becomes a lack of function where things are not only difficult, but impossible to do. Once disabled, you will need to give things up insofar as this “you” is a non-disabled you who walks and does sports; but not now, now that medical professionals say that you will not recover. “Now imagine …” something else: imagine what you are not, namely, disabled and a professional car racer (however, do so while not imagining that you are someone producing or consuming disability news). The disability imaginary is conceived as a parting of ways with the capacity to do things alongside the smooth ordinary flow of daily life that includes not only a lack of difficulty but also an abundance of possibility—walking, sports, racing cars and a capacity to imagine it all (while dis-attending to reading and/or producing the news). Normalcy conceived of as natural is made separate from disability conceived of as pathological and this separation is made prevalent and powerful through the underlying assumption that normalcy is possibility and is separate from disability since disability is imaged as nothing but limiting.36 Non-disability is normal, natural and full of possibility; whereas disability is pathological, not natural and full of limitation. Struggling back into the fold of normalcy requires the almost superhuman invocation of the human spirit (which need not read the memo). Even as this imaginary serves to aggrandize normal life it, nonetheless, can remind all people of the interpretive tensions that constitute existence, tensions that are kept alive even as a functional normalcy seems the be-all and the end-all of the modern era. Indeed, this particular “realist” notion of disability begins to seem key to the operation of normal everyday life. Is this tantamount to encountering disability as integral to the smooth workings of normalcy or, at least, as inviting the reader to imagine it as such? Even for the fully able-bodied, the world can be a cruel and challenging place to navigate. In northwest Michigan, we know all too well about low wages, unemployment, underemployment and the zigzagging path to providing enough for yourself or your family. Imagine if, through no choice of your own, you were dealt an even harder card to play. For people with developmental disabilities in this region—and every other, for that matter —often times the impediment to independence and happiness is a lack of opportunity.37 Fully non-disabled, also through no choice of one’s own, pursuing, perhaps even achieving independence and happiness despite a relative lack of opportunity—this is the imagined underside to the “imagine if you had a disability.” Along with being a fanciful version of life, it is fascinating that normal life seems to need disability, needs it to be really far out and alienated, as this helps to make fanciful versions of normal life less noticeable. Fitting disability and non-disability together via the invitation to “imagine” relies on a dividing line between the pathological and the normal and on the assumed normalcy of not thinking about the work needed to produce all that gets configured as normal—ease, resources, doing things. Still, the reader is asked to imagine and this risks the possibility of doing so in ways that fall outside of the confines of the news article’s restricted imaginary. Could not the production of news media benefit from playing a bigger role in bringing to attention the sorts of disability imaginaries it puts into circulation? If 19

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so, this would require focusing on the background order of normalcy against which disability is typically made to show up as unwanted difficulty.

Conclusion While disability imaginaries bring to awareness difficulty; they do not typically make us aware of the more fanciful relation to normal existence that lies behind the imagine disability invitation; nor do they expect that the reader begin by imagining what this disability imaginary potentiates. Normal existence, the one we are not expected to think about,38 typically remains unthought when we are asked to imagine disability. And yet, imagination remains. It is, after all, possible to imagine a version of the human that would permit readers to imagine disability as life itself; doing things, even difficult things, but still a life that is more and other than what we know and believe disability to be.39 Instead of conceiving of disability as just something that affects the living of life, it is possible to begin to imagine life in disability. My analysis would not have been possible without such an image. Imagining waking up and not moving, for example, could be waking up into the immediacy of interdependency, the immediacy of human relations and thus awaken an image of imagination that can acknowledge that disabled life is fully occupied by other people from the moment consciousness dawns. As such, disability is far more provocative than lack of function. This means too that disability experience might be exactly where it is possible to begin to activate an imagination that is not wholly generated by a pathological imaginary. That we can imagine life in disability, means that imagination is not simply a capacity to conjure images from nothing that currently exists into something that does; nor is it merely calling to mind images of what is no longer in front of us. Instead, imagination is a form of intimacy with the materiality of life since everything that appears does so in relation to existing meanings that can be worked with—lived—in unexpected ways. Just as Gerard Goggin has shown that there is no clear account of mobile web accessibility;40 there is no clear account of whether media producers are accessing their own conceptions of disability or not. There has been some research showing the manner in which disability is represented, but little work that demonstrates that media producers have taken an interpretive reflexive turn when it comes to disability.41 Until the act of interpretation as an inescapable aspect of media production is taken into account, that is, until media analysis moves behind its realistic and/or truthful accounts of disability in order to unpack the social imaginaries that have made these accounts possible, the complex political and social phenomenon that disability is will remain underrepresented and, perhaps, hidden in our reactions. Disability must be more than an inability to do things in a way considered normal by human beings. That imagination is an activity reflective of the constraints of convention and can yet enact a rupture of convention, means that imagination can be read as a relation to the world and destined for it. As pathological and alienating as disability imaginaries are, they can still be occasions where people might invite engagement with embodiment that potentiate courses of action in the world, that might do something other than reproduce more of the same. Imagine disability … could be a mutually co-constitutive form of engagement between disability and non-disability. In this, there is but a small hope. Yet, it is one that we could aim to imagine.

Notes 1 That imagination is enworlded is a basic assumption of critical work informed by phenomenology. See endnote 27 as well as 33 for resources to support this approach. 2 Cornelius Castoriadis, The Imaginary Institutions of Society (Cambridge, UK: Polity Press, 1987). See also, Jean-Paul Sartre, The Psychology of Imagination (New York: Citadel Press, 1966).

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Disability Imaginaries in the News 3 Dan Goodley, “Theorising Disability and the Human,” in Critical Readings in Interdisciplinary Disability Studies, ed. Linda Ware (Switzerland: Springer, forthcoming). 4 Henri-Jacques Stiker, A History of Disability (Ann Arbor: University of Michigan Press, 1997), 51. 5 Eve Haque, “In the Name of the National Multicultural Family: The Documentation of Honour Killings and the Pedagogy of Pain,” Topia: Canadian Journal of Cultural Studies 36, (Fall, 2016): 79–97. 6 Neither denying nor accepting the social model of disability, or any other model, the approach taken here suggests that made by culture, yet never at one with it, “disability” is a prime place to explore both the meaning of culture and any of its constructs. From this approach, any appearance of disability marks an occasion where we might “break into” the cultural commitments that have helped build the meaning of disability—in this case, break into those assumptions that make disability newsworthy. 7 Ruth Styles, “Can You Imagine Changing a Nappy with Your TEETH? Disabled Mother Who Can’t Use Her Arms or Legs Reveals How She Copes with Two Young Children,” Daily Mail, March 26, 2013, www.dailymail.co.uk/femail/article-2299358/Disabled-mother-use-arms-legs-reveals-copes-young-children. html#ixzz3Ysw0DpVO. 8 Susan Wagner-White, “Imagine Getting Through the Day With No Arms. That’s My Life Thanks to Thalidomide,” Huffington Post, February 26, 2015, www.huffingtonpost.ca/susan-wagnerwhite/thalidomideright-the-wrong_b_6754084.html. 9 San Grewal and Jackie Hong, “Star Reporter Barbara Turnbull Overcame Debilitating Injury to Carve out a Superlative Career,” Toronto Star, May 10, 2015, www.thestar.com/news/gta/2015/05/10/star-reporterbarbara-turnbull-overcame-debilitating-injury-to-carve-out-a-superlative-career.html. 10 Shane Elliott, “Disabled Drivers Conquer Mosport,” Autofocus, July 10, 2014, www.autofocus.ca/newsevents/features/disabled-drivers-conquer-mosport. 11 Lisa Esposito, “Young, Blind and Dealing With It,” U.S. News, November 13, 2015, http://health.usnews. com/health-news/patient-advice/articles/2015/11/13/young-blind-and-dealing-with-it. 12 Craig Currier, “Ceremony Draws Awareness to Key Issue,” Petoskey News-Review, October 28, 2015, www.petoskeynews.com/news/opinion/craig-currier-ceremony-draws-awareness-to-key-issue/arti cle_625cc974-0d39-5326-a73f-919560a0ab15.html. 13 Statistics Canada, Housing, Family and Social Statistics Division, A New Approach to Disability Data (Ottawa: Statistics Canada, 2002), www.publications.gc.ca/site/eng/238891/publication.html. For a fuller discussion of such surveys, see Tanya Titchkosky, “Totally a Problem: Government Survey Texts,” Reading and Writing Disability Differently (Toronto: University of Toronto Press, 2007), 45–78. 14 Statistics Canada, Social and Aboriginal Statistics Division, Canadian Survey on Disability 2012: Concepts and Methods Guide (Ottawa: Statistics Canada, 2014), 5, www.statcan.gc.ca/pub/89-654-x/89-654-x2014001eng.htm. 15 Statistics New Zealand, “Definitions,” New Zealand Disability Survey, June 17, 2014, www.stats.govt.nz/ browse_for_stats/health/disabilities/DisabilitySurvey_HOTP2013/Definitions.aspx. 16 World Health Assembly (WHO), International Classification of Impairments, Disabilities and Handicaps (ICIDH) (Geneva: World Health Organization, 1980), 28. 17 World Health Organization and World Bank, World Report on Disability: Summary (Geneva: WHO and the World Bank, 2011), 7–8. See any of the definitions of disability used to conduct disability surveys around the globe for this functional conception of disability at http://disabilitysurvey.checkdesign.de. 18 The literature that engages disability images is extensive and empirical analysis of these images is happening around the globe. For an extensive repository of this work, see Beth Haller, http://media-disability-bibliog raphy.blogspot.ca. See also, Katie Ellis and Gerard Goggin, Disability and the media (New York: Palgrave Macmillan, 2015); Lingling Zhang and Beth Haller, “Consuming Image: How Mass Media Impact the Identity of People With Disabilities,” Communication Quarterly 61, no. 3 (2013): 319–334; Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowman & Littlefield, 2003). 19 Rosemarie Garland-Thomson, Staring: How We Look (New York: Oxford University Press, 2009). 20 Ato Quayson, Aesthetic Nervousness: Disability and the Crisis of Representation (New York: Columbia University Press, 2007). 21 Michael Berube, “Representation,” in Keywords for Disability Studies, ed. Adams Rachel, Benjamin Reiss and David Serlin (New York: New York University Press, 2015), 154. 22 Beth Haller, Mihaela Dinca-Panaitescu, Marcia Rioux, Andrew Laing, Jessica Vostermans and Paula Hearn, “The Place of News Media Analysis within Canadian Disability Studies,” Canadian Journal of Disability Studies 1, no. 2 (2012): 43–74. 23 David Mitchell and Sharon Snyder, “Narrative,” in Keywords for Disability Studies, ed. Adams Rachel, Benjamin Reiss and David Serlin (New York: New York University Press, 2015), 108.

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24 Rod Michalko, The Difference that Disability Makes (Philadelphia: Temple University Press, 2002), 128. 25 Marcia H. Rioux, Paula C. Pinto and Gillian Parekh, Disability, Rights Monitoring, and Social Change: Building Power out of Evidence (Toronto: Canadian Scholars Press, 2015); for an analysis of the phenomenon of monitoring itself as it produces versions of disability see Tanya Titchkosky, “Monitoring Disability: The Question of the ‘Human’ in ‘Human Rights Projects,’” in Disability, Human Rights, and the Limits of Humanitarianism, ed. Cathy Schlund-Vials and Michael Gill (Burlington, VT: Ashgate Press, 2014), 119–136. For a recent collection that creatively works with mis-recognition, see Christine Kelly and Michael Orsini, Mobilizing Metaphor: Art, Culture, and Disability Activism in Canada (Vancouver: UBC Press, 2016). 26 For the limits of documentation in the enactment of social change, see Eve Tuck, “Suspending Damage: A Letter to Communities,” Harvard Educational Review 79, no. 3 (2009): 409–427, http://pages.ucsd.edu/ ~rfrank/class_web/ES-114A/Week%204/TuckHEdR79-3.pdf. 27 The following theorists, who address the concept of imagination as well as raise the question of the human imaginary, have influenced me greatly: Benedict Anderson, Hannah Arendt, Chiara Botticci, Cornelius Castoriadis, Franz Fanon, Paul Gilroy, Maurice Merleau-Ponty, Jean-Paul Sartre, Charles Taylor, Sylivia Wynter and Richard Zaner. 28 Charles Taylor, “Modern Social Imaginaries,” Public Culture 14, no. 1 (2002): 106. 29 Georges Canguilhem suggests that “enlightened” formulations of the pathological have followed “the thesis according to which pathological phenomena are identical to corresponding normal phenomena save for the quantitative variations”—that is, too much or too little of what is otherwise regarded as the normal state. The Normal and the Pathological (New York: Zone Books, [1966] 1991), 35. 30 This reflects Karl Marx’s delineation of “alienation” in the 1844 Manuscripts. 31 Paul Gilroy, Postcolonial Melancholia (New York: Columbia University Press, 2005), 53. 32 Goodley, “Theorizing Disability.” Thanks to Goodley (personal communication, May 19, 2016) for suggesting that perhaps imagination could disrupt the functionalist imaginal politics that typically surrounds disability. 33 Maurice Merleau-Ponty, Phenomenology of Perception (London: Routledge Classics, 1945), xxii; for imaginary as distinct from ideology, opinions or collective consciousness see Chris Gilleard and Paul Higgs. “The Fourth Age and the Concept of a ‘Social Imaginary’: A Theoretical Excursus,” Journal of Aging Studies 27 (2013): 368–376; see also Chiara Bottici, Imaginal Politics: Images Beyond Imagination and the Imaginary (New York: Columbia University Press, 2014). 34 Grewal and Hong, “Star Reporter Barbara Turnbull Overcame.” 35 Elliott, “Disabled Drivers Conquer Mosport.” 36 For a further exploration of limit supposedly alienated from possibility, see Tanya Titchkosky, “The Ends of the Body as Pedagogic Possibility,” in Review of Education, Pedagogy, and Cultural Studies, special issue “Health, Embodiment, and Visual Culture,” ed. Sarah Brophy and Janice Hladjk, 34, no. 3–4 (2012): 82–93. 37 Currier, “Ceremony Draws Awareness to Key Issue.” 38 “One of the most ‘abnormal’ things about being ‘normal’ is attending to its production.” Michalko, The Difference, 82. 39 Stiker, A History of Disability, 51. 40 Gerard Goggin, “Disability and Web Mobility,” First Monday 20, no. 9 (2015): 1–19, http://journals.uic. edu/ojs/index.php/fm/rt/printerFriendly/6171/4906. 41 I have discussed this elsewhere as the politics of wonder that requires a restless reflexive return to what we already say and do with disability. For an example, consider the final chapter of Tanya Titchkosky, The Question of Access (Toronto: University of Toronto Press, 2011).

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2 WHAT’S IT ALL WORTH? The Political Economy of Disability Representation in Indian Media Nookaraju Bendukurthi and Usha Raman

Introduction In 2011, the last available census in India found there were just under 27 million people with disabilities out of a population that totalled 1.2 billion at the time.1 The Indian media landscape is large and varied, with 869 television channels (386 news and current affairs and 483 are non-news and current affairs channels)2 and 114,820 registered publications (16,993 newspapers and 97,827 periodicals).3 In general, disability features in the Indian media only when a person with a disability has achieved something that overshadows or appears to overcome his/her impairment, suggesting that media disability occurs consistently within certain frames. With the awakening of the disability rights movement in India, disability activists have begun to question these stigmatizing frames but little academic research has explored this in the Indian context. This chapter addresses this question on two fronts, looking at the representation of disability in the Indian news media, while also exploring issues of inclusion of persons with disabilities within the news production process. We argue that while news media tend to frame disability in ways that have not moved beyond the medical model, continuing to use stigmatizing portrayals, there is also a discernible shift toward presenting persons with disabilities as potential contributors to the market economy—playing out the mainstream Indian media’s role in furthering a neoliberal agenda. On the other hand, through a series of interviews with Indian media professionals and consumers, we find that there is little awareness of regulatory provisions related to disability and employment, nor is there a readiness to include persons with disabilities in the process of production, thus exacerbating the marginalization of this group from mainstream news production.

Representation Matters Contemporary media are generally seen as an important locus of identity politics, with particular significance for socio-economically, culturally and politically marginalized groups. Media coverage has the potential to shape the perceptions and thereby the attitudes of the audiences towards disability.4 This chapter, in line with Marxian thought, focuses on how the intellectual/creative investments of Indian media blend with capitalist interests to represent disability. Considerable academic work over the years has focused on the nature and consequence of media representations, particularly of those outside what might be considered the “mainstream.”

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Stuart Hall, notably, refers to “representation” as the cumulative outcome of the signs and symbols that stand for some facet of “reality” such as objects, people, groups, places, events, social norms and cultural identities. These symbolic elements work within a dominant ideological framework and may be present in any medium, becoming indispensable—and often indiscernible —characteristics of social life that allow us to communicate and make sense of our surroundings.5 Gerbner6 contends that media representations play a major role in how audiences perceive the world, particularly that which lies outside their immediate experience. Extending this argument, Dyer7 notes that audiences’ attitudes too are shaped to a great extent by media representations. This suggests that the ideological power of media works over time to make representations seem “natural” or “normal.” Media scholars have argued that the media offer a selective8 and mediated9 construction of reality.10 Studies on disability representation in Western contexts have found that the media tends to present people with disabilities as passive and non-reactive11 reinforcing stigma12 and leading to a negative depiction of individuals with disabilities.13 This negative view of people with disabilities routinely appears both in broadcast and print news.14 People with disabilities are often presented as “defective” or as having a low social value.15 Different typologies have been suggested to categorize media representations of people with disabilities, which emphasize the overwhelmingly negative portrayal.16 Consequently, media scholars have called for the application of a variety of critical frameworks to uncover the ideological and social basis of media production processes, which lead to such portrayals.17 Situating itself within the larger scholarship on media representation and reception studies, this chapter uses the pioneering framework developed to study media representation of disability by John Clogston18 and Beth Haller19 to look at how disability is framed in the Indian print media. Based on a close reading of English and local language media texts, we argue that disability representation in Indian media is essentially a matter of scant and skewed coverage. Media representations of disability are important in (at least) two ways: (1) in terms of shaping ideas about and attitudes toward people with disabilities and (2) in affirming the participation of people with disabilities in the larger social space.

Uncovering Meaning in Disability News Production This chapter presents findings from research conducted between 2012 and 2013. To understand the politics associated with media coverage of disability in India, we draw upon two sets of material: news stories that were analyzed using frame analysis20 and in-depth interviews with news producers and consumers. Two major Indian newspapers The Hindu (English) and Eenadu (Telugu, the dominant language in the southern states of Andhra Pradesh and Telangana) were examined. A total of 205 disability-specific news articles that appeared in the main section of each paper during the year 2012 were selected for analysis. News frames were identified applying the approach proposed by Statham and Mynott,21 using specific keywords related to disability in English and Telugu: blind, cripple, deaf, defective, disabled, handicapped, impaired, mental, as well as contextually specific terms such as blind cricket and Paralympics. Additionally, to understand media’s perspectives on the inclusion of people with disabilities in the production process and to explore the perceptions and opinions of people with disabilities as media consumers, we conducted in-depth interviews with individuals from civil society, academia, lawyers and freelancers. Participants were recruited through a snowball technique and interviews were conducted through 2013. Participants were drawn primarily from two groups: media producers (n = 22) and media consumers (n = 8). The media producers included individuals who performed editorial 24

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(copydesk and reporting) and administrative functions. This group had both people with disabilities and able-bodied people. The media consumer group consisted of disability rights activists, academicians and legal professionals. In this group too, there were people with disabilities as well as able-bodied persons. Media producers were selected to reflect a range of experience, interests and seniority, while media consumers were selected based on their active engagement with media as freelancers or with issues related to disability. The interviews helped connect the issues of inclusion in the production process and the perception of consumers with the overarching theme of this chapter, i.e. disability representation in media. The interviews were inductively analyzed to arrive at the respondent’s understanding of and attitude toward inclusion.

Framing Disability in News Disability representation was analyzed in the selected news stories with reference to the rhetorical (verbal and visuals) and design techniques or frame elements,22 which are constituted by the headlines, body text, illustrations or photographs, captions and any other typographical or design features. Frames may be seen as ideological devices that constrain reading of information in specific ways. They represent specific assumptions, beliefs or viewpoints of media, in this case—we argue—an ableist perspective. In general, such analysis draws on four dominant frames that have been found to repeatedly occur in news stories: human interest, conflict, responsibility and economic consequence.23 Our analysis revealed that by and large, two of the four frames were used to construct stories related to disability: human interest and conflict. 1. Human interest frame: Stories told using this frame appear as “non-dystopian narratives” that work to counter negative beliefs about disability. These included stories about individuals who had achieved success in various fields despite their disability, for instance in an Eenadu story headlined “Chetule ootam, Kilimanjaro dasoham” (Using Only His Hands, He Climbed Kilimanjaro)24 and another one: “Chupulekunna Chukkani Aiyyadu” (Without Sight, He Led the Way).25 These stories encourage readers to see people with disabilities as possessing courage and strength, but do this by primarily focusing on the cause of their disability. This ends up framing people with disabilities as having ability to be productive achievers “despite” their impairments. 2. Conflict frame: Conflict has always been a primary journalistic value. In the case of disability stories, the conflict frame foregrounds the tension between the needs of people with disabilities and institutional/social structures that they live within. Stories that are told through this frame had to do with negligence and insensitivity resulting from the dominant political, social and economic systems that produce disability, for example the headline “Vaikalyam … veerika, sarkaruka?” (Disability … Is It in These People? Or Is It in the Government?);26 or in a story headlined “I Was Literally Thrown Down the Steps of the Aircraft, Says Disabled Woman,”27 about a wheelchair user who was rudely pushed on to the exit ramp as she left the plane. Repeated use of this frame relegates people with disabilities to a forever-dependent category, requiring assistance from society and the government. It also reinforces the idea that a life with disability is a continuous struggle. Our analysis, detailed in an earlier publication28 revealed that Indian newspapers favour the use of these two news frames to represent disability, and these produce certain meanings that constitute four analytical themes: goodwill building, persistence of medical model, economism and modern freak shows. These are briefly described below. 25

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(a) Goodwill building: Several news stories showcase achievements of persons with disabilities in order to generate awareness and empathy, and in the process, build goodwill toward this group of people. Specific language such as “seeking,” “looking for” or “waiting to receive …” seem to invoke a sense of charity,29 but in effect they shift the focus from disability to capability or the readiness of people with disabilities to be part of the workplace, e.g. when a photograph is captioned “SPECIAL TALENT” as part of the story titled “DifferentlyAbled Indeed!”30 (b) Economism: Articles grouped under this theme discussed disability as an economic category, particularly matters associated with benefits, welfare, financial aid, grants, budget allocations or salaries. This included stories such as “Decision on Increase in Pension Before March: Kiran”31 and “Vikalangulaku, Rs.1500 Pinchanu” (Rs.1500 Pension for the Disabled).32 These news stories reinforce a notion that people with disabilities/disability groups are a needy/dependent category requiring support from the government and society. Here, the media attempt to speak on behalf of people with disabilities, often using personal narratives and examples. They pose questions and identify systemic faults that cause financial strain to people with disabilities—in a sense advocating for a greater level of support from society. (c) Persistence of medical model: While the social sector, by and large, and the disability movement, in particular, has moved away from the medical model to embrace the biopsychosocial model of disability, our analysis found that the medical model is alive and well in media narratives. Many news stories present people with disabilities as subjects with “impairment” who need medical care or assistive technology, indicating the continued presence of the medical model of disability.33 For example, stories such as “Robo Cheyuta” (Robotic Hand Help)34 and “Andhatva nirodhaniki Tika” (A Vaccine to Prevent Blindness).35 These stories suggest that scientific developments can serve as life givers rather than need fulfillers for persons with disabilities, often implying that the person becomes whole only with such interventions. (d) Modern freak shows: Photographs, illustrations and design elements consciously exhibit the subjects of news—in this case disability—in specific ways to draw readers and viewers to the topic. This has the effect of creating what we call “modern freak shows.” For instance, photographs of two Paralympians, (“Rajata Girisha” (Silver Girisha)36 and “Oscar Pistorius Retains the 400m Title”),37 draw attention to their impairments while showing these disabled athletes in action. The camera focuses on the disability, while the visual editing highlights it further. In this way, media coverage of impairment recalls this almost forgotten vintage cultural form—freak shows—which were notorious between the seventeenth and nineteenth centuries in Europe and in the United States as a popular form of entertainment.38 Today’s mediated freak shows, however, occur within the pages of newspapers or on television screens, exhibiting for reader/viewer pleasure, the oddities of life—disability being one of them. The (largely able-bodied) audience, for its part, becomes complicit in consuming the framed oddity by the very act of buying/subscribing and then reading/viewing. While the freak show of the past might have been guided by the pre- and semi-industrial sociocultural conditions, today’s manifestation could be seen as influenced by the requirements of neoliberalism. Our analysis thus suggests that the modern freak shows are staged through media photographs and both extend the social practice of disability in a different, more distributed (and therefore more widely accessible) venue than did the freak shows of the past.

Political Economy An overarching theme that we discerned in the media coverage of disability—political economy— links it firmly to the values of the market. Looking at this from the Marxist viewpoint, where “all 26

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human relations are connected to economic relations,”39 we found that the social acceptance of disability in the Indian context is closely linked with presenting the abilities of people with disabilities and promoting their incorporation into the market. The concept of political economy is not new in media studies and there is general agreement among scholars in terms of how it operates in structuring media institutions.40 However, in this case, the term is used to refer to the way media organizations align their needs with the capitalist economy to fulfil their business objectives (both political and financial) by projecting the work abilities (reserve capacities) of people with disabilities. Across the stories analyzed in our research, two common themes had to do with (1) how people with disabilities achieve productivity/success despite their impairments and (2) how assistive technology could be deployed to turn them into a productive workforce. These narratives speak to Marx’s view of elderly and disabled people and their status in the capitalist world: “a reserve army of labour.”41 Our close examination of news presentation strategies (verbal and visual) was instrumental in understanding the nuanced means and ways by which newspapers present the struggles and achievements of persons with disabilities, leading to a stereotypical representation for audiences. The repeated use of frame elements serves to perform political and social functions, where economic value is always an undercurrent. At another level, the frame elements also raise the value of the story itself as a media commodity. Stories grouped under the goodwill-building theme showcased the abilities of people with disabilities through the use of specific vocabulary in news stories, such as “specially abled,” “specially gifted” and “differently abled.” By consciously replacing or modifying the word “disabled,” the media present disability within an ableist framework. This we believe is an important component of the political economy of disability representation, and points to what we call media construction of ableism, which “describes prejudicial attitudes and discriminatory behaviors toward persons with a disability.”42 In the stories grouped under the economism theme, there seems to be an inherent contradiction in the media’s views and coverage; on the one hand, (less commonly) people with disabilities are presented as a “dependent” group requiring the state’s support, while on the other hand, they are seen as a potential workforce for use by the market. Such framing, repeated over time, nudges one towards the sense that if people with disabilities become part of the productive work force, they can be released from dependency. The stories that suggest persistence of the medical model reinforce the idea that cutting-edge developments in the field of medicine, particularly the adoption of new inventions (“fixes”) and medical technologies, could make it possible for people with disabilities to join the workforce. These stories, in our analysis, work at two levels. News on assistive technological breakthroughs serves as publicity and generates demand for these products. At the second level, these stories suggest, along with the theme of economism, that people with disabilities “enhanced” by these “medical fixes” can become employable. Disability-specific news accompanied by photographs that were grouped under the modern freak shows theme present the body-geography of persons with disabilities. Such imagery taps into the anxiety of the able-bodied audience and draws attention to the disability, while simultaneously attempting to alleviate this anxiety by pointing to the “abilities” of this group to be active in ways demanded by and acceptable to (and that contribute to) a capitalist society. In summary, the media’s representation of disability serves to present people with disabilities as a category that deserves our goodwill, is economically dependent, requires a medical or technological fix and can be displayed for the consumption of a curious public in a modern form of the freak show. These categories of representation, when viewed through a political economy lens, allow us to see how the media perform a key role in converting narratives of disability that go beyond the popular dichotomous (able/disabled) understandings of society and reintroduce people with disabilities as a productive group who have a place in the contemporary market economy. 27

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From an understanding of media representation of disability, it is then important to consider the perceptions of media producers and media consumers about the presence of people with disabilities in media production—an aspect we now turn to.

The Idea of Inclusion Our interviews with media producers (editorial and administrative) provided insights into the media’s commitment and preparedness to accommodate persons with disabilities in the process of production, while interviews with media consumers (disability rights activists, legal professionals and academicians) revealed expectations and apprehensions of disability groups in intervening in the media production process. We also briefly interrogate the connection between media’s coverage on disability issues and their stance on inclusion. One would expect that the burgeoning Indian media industry would make room for the participation of diverse and hitherto marginalized groups, but even casual observation reveals that this is not so. A number of accounts illustrate that people with disabilities can compete and contribute to all aspects of social and economic life in India.43 This section of the chapter explores the existing realities and possibilities of inclusion of people with disabilities in the media industry through interviews with media professionals at various levels, as well as disability advocates who work in the areas of media and advocacy. In-depth interviews with 30 research participants (22 in the category of media producers and 8 media consumers) led to insights on perceptions of disability and inclusion and awareness about legal and regulatory aspects of disability. (a) Perceptions on disability: Most editorial professionals believed that disability should be dealt with in a spirit of kindness/generosity, reflecting the charity model of disability. Some media producers believed that people with disabilities were a source of inspiration to the largely ablebodied society. However, people with disabilities looked at bodily impairment as a matter of difference and desired to be perceived as self-ascertaining, in line with the social model of disability. Media employees with disabilities, as might be expected, did not wish to be called disabled or to be treated differently or given special consideration. (b) Perceptions on inclusion: Perceptions varied across the interview subjects based on their position. Those in editorial roles saw disability as a physical limitation/defect to the body, not to the mind, which should not hinder employment. However, interviewees who had field-level duties noted that “those who have difficulty with their movement (mobility) cannot compete in the field (media).”44 This suggested that they continue to see disability through a frame of “deficit.” Some media professionals noted that there does exist a bias against candidates with visible physical impairments. Referring to the business orientation of media organizations, an editorial decision maker noted that “nobody is running this (media) business with a service objective [for charity] and we do extend [consideration to] the disabled at the level possible.”45 Several media professionals emphasized that media jobs are ruthlessly competitive, which makes it difficult for people with disabilities.

Avenues of Inclusion Media consumers with disabilities reported that media needed to continuously explore ways to include people with disabilities. They suggested a special call to recruit people with disabilities, as is done with other forms of diversity hiring. A journalism school administrator said that disability should be included in the syllabi of media schools. Disabled media employees said their own persistence is what resulted in their achievements. Significantly, none of them talked about issues of accessibility. 28

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Inclusive Language Media consumers with disabilities in India point to the problematic nature of the word “disabled” for them. They say this word places them in a negative light and undermines their potential (use value). Civil society organizations in India have been demanding a shift to the use of people-first language, which they believe could, over time, shape public attitudes. However, Beth Haller notes that peoplefirst language is not a preferable choice in some countries, like the United Kingdom.46

Consequences of Inclusion News coverage of disability issues by people with disabilities is an important issue for some editorial staff, who noted that, if given the opportunity, people with disabilities would be able to contribute to these efforts. Other media professionals disagreed, saying that this would lead to ghettoization of disabled media professionals. One respondent noted that when a story is being done by an able-bodied reporter, he/she could approach a colleague with a disability to make sure the disability perspective was reflected accurately.

Rights, Jobs and Incentives Those with disability see their inclusion in the media from a rights-based perspective, because “work is, after all, a matter of human right.”47 On the other hand, a female disabled activist who works in a rural area said that employing people with disabilities in media is the “humane” thing to do, reflecting a charity mind-set. Another media respondent expressed skepticism about the inclusion of people with disabilities in media. In general, the media employees with disabilities’ concern was that despite being given the opportunity to work with media, material circumstances coupled with little institutional commitment continue to determine what the employees should/can and should not/cannot do. A practicing lawyer with a visual impairment representing the media consumer group said he sees employment of people with disabilities in media as a matter of fulfilling the organization’s social responsibility and as an attempt to receive government benefits, such as tax reductions. However, despite the presence of these incentives, as noted by one disability studies scholar, few media organizations invest in building their capacities by hiring employees with disabilities. A senior correspondent at a national daily suggested that there should be specific legislation coupled with strict enforcement of norms related to hiring individuals with disabilities for media jobs.

Absence of a Policy All the media workers interviewed said that the media industry does not have any specific recruitment policy for people with disabilities but hires them only out of a sense of social responsibility. On probing this issue further, two media professionals said that media might not be able to afford too many positions for people with disabilities and such a policy in the Indian context might further complicate the politics of identity-based representation in India, i.e. the Indian Constitution already mandates reservations in public education and employment for historically disadvantaged groups on the basis of caste and ethnicity.

Jobs for People with Disabilities A majority of participants suggested that people with disabilities would be best suited to deskbased jobs and said that the media industry would prefer disabled applicants only when there is

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a shortage of able-bodied manpower. This might be the case particularly with smaller, niche newspapers because, as a daily newspaper editor noted, the mainstream newspapers have more applicants than they have jobs to fill. The foremost concern among media consumers with disabilities was not so much inclusion of professionals with disabilities in the media production process, as the attitude of their able-bodied colleagues. They see the discrimination that disabled employees might face as a greater hurdle than any limitations imposed by infrastructure.

Inclusive Structures The presence of accessible infrastructure is instrumental to disability inclusion in media or indeed, any sector; it is also a sign of society’s acceptance of disability. Most of the participants from the editorial side noted the absence of such infrastructure. They did, however, point to facilities provided for those who acquired disability in the course of their work, citing examples of workspaces being made wheelchair accessible and elevators being provided. The respondents also pointed to instances where organizations had moved newly disabled employees into completely different roles to accommodate them without making any changes to the structure of the organization. Two of the media respondents said that the provision of accessible infrastructure would be contingent on the perceived value of such employees to the organization, i.e. if they felt the investment was worth it in professional terms, they would provide it. (c) Legal and regulatory aspects of disability: The interviews explored participants’ understanding of disability-inclusive policy and regulation and specifically their awareness of the “The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995” (PWD Act, 1995). The media industry participants in this study showed little awareness or understanding of the PWD Act of 1995, apart from a vague idea about a 3 percent reservation in the public sector for all kinds of jobs. One editorial member from a regional newspaper said that such an Act would be instrumental in creating a friendly work environment, and another felt that such a law would help ensure access to opportunities in education and employment. A few of the participants knew about the move to introduce the new Rights of the Persons with Disabilities Act 2016 (RPWD Act)48 and said this might force the media industry to rethink its policies. A senior correspondent at an English daily was optimistic about the presence of people with disabilities in media spaces, even if it was because of legal enforcement. Whereas, another media worker said that this would be a responsibility that organizations were not ready for. An administrator from the English-language newspaper stated that workplaces should follow clear stateissued guidelines. A senior editorial media worker said that laws could help media create an equal opportunity system, also noting that while no organization would explicitly refuse to comply with the PWD Act, in practice such policies remain utopian. Respondents from civil society organizations found fault with the implementation of the existing disability laws and stated that this would continue, even if there were explicit legal provisions related to inclusion. However, a lawyer from a disability consumer group emphasized that the focus should be more on creating awareness of the law. She noted that poor implementation was a result of the lack of ways to monitor compliance with the laws.

Ambivalence and Skepticism In summary, the interviews indicated a certain degree of ambivalence among media professionals with regard to inclusion as a practice, with most focusing on either the charity model or the legislative approach to support it. As might be expected, people with disabilities, both within the 30

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industry and those in the consumer group, believe that the media industry needs to be made accountable through legislation and awareness campaigns to adopt a rights-based approach to inclusion. The media producers’ responses reflected that the presence of people with disabilities in the media is a result of kindness or sympathy. The consumer group of people with disabilities, however, emphasize that charity and respect cannot go together and in such a model the actual beneficiary is the one who creates the opportunity. For media consumers with disabilities, inclusion is an ethical practice based on social acceptance; this contrasts with the view from media producers who look at it as a social responsibility. Further, disabled consumers see their inclusion as carrying the spirit of the global disability movement that emphasizes “nothing about us without us”49 and “pay us, do not play us.”50 The occasional presence of people with disabilities in media is most often an “organizational compromise” or an act of “generosity.” In the pain of their compromise and in the gain of generosity (benefits from the government to the organization that employs people with disabilities), media industries seem to be largely ignoring the use value of people with disabilities. The media’s competitive nature further marginalizes already marginalized people with disabilities, contributing towards a disabling work environment, in which (in the views of our participants) only able-bodied employees can effectively compete. Every media producer interviewed mentioned only a few job categories that were “suited” to people with disabilities. A wideranging choice of media-related jobs seems to be a distant dream for Indians with disabilities. None of the respondents indicated awareness of any media policy related to either covering disability issues or including people with disabilities. Media tend to introduce accommodations and access only when a media professional becomes disabled on the job. In some cases people with disabilities were recruited for media positions only when ablebodied people were not available for a particular job. This is what we call “proxy choice.” Faced with the relative invisibility of people with disabilities in their organization and the absence of an accessible environment, the media professionals interviewed took a defensive position, saying that such facilities would be provided when people with disabilities “proved their worth.” Consumers with disabilities expressed the need for media policies that would promote respect for them and allow them to achieve their potential. In their view, media inclusive policies could lead to a change in attitudes in which people with disabilities are seen for their potential and are not only proxy labor. However, media producers argued that inclusion of people with disabilities in media would place an economic burden on an already constrained sector. This reflects the reality that media are a part of the capitalist mode of production, governed by market logic.51 A majority of research participants wanted inclusion to be mandated by law. In their view, invoking a law might offer a solution to any number of issues such as mandatory recruitment, ensuring accessibility and promoting a culture of respect in media workplaces. They quote many instances from history where change has been made possible only through a legal mandate. The above analysis suggests that the current non-inclusive media practice and the attitudes of media professionals toward disability create the context for the resulting representation practices discussed earlier in this chapter. While media are to some extent proactive in representing persons with disability as a potential workforce, the irony is that the same media are reluctant to incorporate inclusive practices.

Conclusion In Marxian terms, the history of all marginalized groups (including people with disabilities) is the history of class struggle. Media, in modern times, offer an arena where these struggles play out. Our research suggests that people with disabilities are represented by the media in India as a sub31

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set of the existing working class that is awaiting to register as new labor. It is a potential work force whose abilities (use value) are being discovered by media and being presented to the world in such a way so as to integrate them into the system of production. Media as the moderator factor has been balancing its interest to promote the neoliberal economy and with its projection of people with disabilities as a form of labor in waiting. Our analysis of news representations of disability indicated that they were more geared towards fulfilling the economic/productive needs of the labor market than the social needs of people with disabilities. In other words, news articles on disability issues possess a greater degree of promotional value than news value. In this way, disability coverage works to take from rather than give back to the disability community of India. Our research reinforces the widely held belief among disability scholars that disability is a social construct, one that is supported and propagated by popular media. At best, the news media serve to create sympathy, fostering the idea of a paternalistic attitude towards people with disabilities and pushing for a cosmetic level of inclusion, without actually creating access. Policies and plans to bring people with disabilities into the media workforce remain at the level of theory, with little systemic or infrastructure change within the media of India.

Notes 1 Census of India 2011, Data on Disability (New Delhi: Office of the Registrar General and Census Commissioner, 2013), www.disabilityaffairs.gov.in/upload/uploadfiles/files/disabilityinindia2011data.pdf.; Government of India, Ministry of Statistics and Programme Implementation, Social Statistics Division, Disabled Persons in India Statistical Profile 2016 (New Delhi: MOSPI, 2017), http://enabled.in/wp/wpcontent/uploads/2017/08/Disabled_persons_in_India_2016.pdf. Note the prevalence of disability in India is possibly understated due to inconsistencies in the definition of disability used in the census in comparison to the definition of the World Health Organization. See Nandita Saikia, Jayanta Kumar Bora, Domantas Jasilionis and Vladimir M. Shkolnikov, “Disability Divides in India: Evidence from the 2011 Census,” PloS One 11, no. 8 (2016), https://journals.plos.org/plosone/article?id=10.1371/journal. pone.0159809. 2 Ministry of Information and Broadcasting (MIB)’s “Master List of Permitted Private Satellite TV Channels as at September 30, 2018,” accessed October 28, 2018, https://mib.gov.in/sites/default/files/Master %20List%20of%20Permitted%20Private%20%20statellite%20TV%20Channels%20as%20on%20% 2030.09.2018.pdf. 3 Registrar of Newspapers for India (RNI), “Press in India Highlights of 2018,” accessed October 28, 2018, http://rni.nic.in/all_page/press_india.aspx. 4 Paul Hunt, “Discrimination: Disabled People and the Media” (Leeds University, 1991), http://disabilitystudies.leeds.ac.uk/files/library/Barnes-Media.pdf; Beth Haller, News Coverage of Disability Issues: Final Report for the Center for an Accessible Society (San Diego, CA: Center for an Accessible Society, 1999), www. accessiblesociety.org/topics/coverage/0799haller.htm; Tom Shakespeare, “Art and Lies? Representations of Disability on Film,” in Disability Discourse, ed. Marion Corker and Sally French (Buckingham, UK: Open University Press, 1999), 164–172; Jenny Morris, “Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights,” Hypatia 16, no. 4 (2001): 1–16. 5 Stuart Hall, Jessica Evans and Sean Nixon, Representation: Cultural Representations and Signifying Practices (London: Sage/Open University, 1997). 6 George Gerbner, “Violence in Television Drama: Trends and Symbolic Functions,” in Media Content and Control: Television and Social Behavior, ed. George A. Comstock and Eli A. Rubinstein (Washington, DC: Government Printing Office, 1972), 28–187. 7 Richard Dyer, The Matter of Images: Essays on Representations (London: Routledge, 1993). 8 David McQueen, Television: A Media Student’s Guide (London: Arnold, 1998). 9 Richard Dyer, Heavenly Bodies: Film Stars and Society (London: Routledge, 1986). 10 Lawrence Grossberg, Ellen Wartella and D. Charles Whitney, Media Making: Mass Media in a Popular Culture (London: Sage, 1998). 11 Dawn O. Braithwaite, “Persons First: Exploring Different Perspectives on Communication with Persons with Disabilities,” in Communication and Disenfranchisement: Social Health Issues and Implications, ed. Eileen Berlin Ray (Hillsdale, NJ: Lawrence Erlbaum Associates, 1996), 449–464. 12 Mary Douglas, Purity and Danger (London: Routledge, [1966] 2001).

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Disability Representation in Indian Media 13 Robert Bogdan, Mary Alice Brown and Susan Bannerman Foster, “Be Honest But Not Cruel: Staff/Parent Communication on Neonatal Unit,” Human Organization 41 (1982): 6–16; Paul K. Longmore, “A Note on Language and the Social Identity of Disabled People,” American Behavioral Scientist 28, no. 3 (1985): 419–423; Irving K. Zola, “‘Depictions of Disability-Metaphor, Message, and Medium in the Media: A Research and Political Agenda,” Social Science Journal 22, no. 4 (1985): 5–17. 14 Anthony Enns and Christopher Smit, Screening Disability: Essays on Cinema and Disability (Lanham, MD: University Press of America, 2001); Ann Pointon and Chris Davies, eds., Framed: Interrogating Disability in the Media (London: British Film Institute, 1997). 15 Marilynn J. Phillips, “Damaged Goods: The Oral Narratives of the Experience of Disability in American Culture,” Social Science & Medicine 30 (1990): 849–885. 16 Richard A. Kurtz, “The Sociological Approach to Mental Retardation,” in Handicap in a Social World, ed. Ann Brechin, Penny Liddiard and John Swain (London: Hodder & Stoughton, 1981); Hunt, “Discrimination.” 17 Jack A. Nelson, The Disabled, the Media, and the Information Age (Westport, CT: Greenwood Press, 1994). 18 John Clogston, “Fifty Years of Disability Coverage in the New York Times,” News Computing Journal 8 (1993): 39–50. 19 Beth Haller, “Rethinking Models of Media Representation of Disability,” Disability Studies Quarterly 15, no. 2 (1995): 29–30, https://towson.academia.edu/BethHaller. 20 Erving Goffman, Frame Analysis: An Essay on the Organization of Experience (Boston: Northeastern University Press, 1974); Daniel A. Kahneman and Amos N. Tversky, “Prospect Theory: An Analysis of Decision Under Risk,” Econometrica 47, no. 2 (1979): 263–291; Frederick Fico and Eric Freedman, “Setting the News Story Agenda: Candidates and Commentators in News Coverage of a Governor’s Race,” Journalism & Mass Communication Quarterly 78 (2001): 437–449; Shanto Iyengar and Adam Simon, “News Coverage of the Gulf Crisis and Public Opinion: A Study of Agenda-Setting, Priming, and Framing,” Communication Research 20 (1993): 365–383; James F. Larson, Television’s Window on the World: International Affairs Coverage on the U.S. Networks (Norwood, NJ: Ablex, 1984); Pippa Norris, Montague Kern and Marion R. Just, Framing Terrorism the News Media, the Government and the Public (New York: Routledge, 2003); Zhongdang Pan and Gerald M. Kosicki, “Framing Analysis: An Approach to News Discourse,” Political Communication 10, no. 1 (1993): 55–75. 21 Paul Statham and Ed Mynott, “The Dilemma of Anti-Racist and Pro-Migrant Mobilisation in Britain: Visibility or Political Power?” (paper presented at the first ECPR conference, Turin, Italy, March 22–27, 2002), https://ecpr.eu/Events/PaperDetails.aspx?PaperID=14898&EventID=47. 22 Frame elements included headlines, kickers (small headlines over the main headlines), photographs, subheads (decks), boxes, graphics, border lines, leads (at the beginnings of news stories), punctuation, language (disability specific), cartoons, photo captions, selection of sources or affiliations/refers (text pointing to other items in the newspaper), selection of quotes/lifts (bits of the story text enlarged to display size), taglines (writer’s name, phone number or email), pull quotes (quotes that are blown up in size for emphasis) and jump lines (indicators for where the story continues on another page or column). 23 Holli A. Semetko and Patti M. Valkenburg, “Framing European Politics: A Content Analysis of Press and Television News,” Journal of Communication 50, no. 2 (2000): 93–109. 24 News Today, “Chetule ootam, Kilimanjaro dasoham” [Only with hands help, he could make Kilimanjaro hand up], Eenadu, June 26, 2012. 25 News Today, “Chepulekunna Chukkani Iyyadu” [Despite of no eye sight, could lead the way], Eenadu, March 9, 2012. 26 News Today, “Vikalayam. veerika? Sarkaruka!?” [Disabled. To these people? Or to the government!?], Eenadu, October 16, 2012. 27 Arthi Dhar, “I Was Literally Thrown Down the Steps of Aircraft, Says Disabled Woman,” The Hindu, February 24, 2012. 28 Nookaraju Bendukurthi and Usha Raman, “Framing Disability in the Indian News Media: A Political Economy Analysis of Representation,” Journal of Creative Communications 11, no. 2 (2016): 135–153. 29 Under this model people with disabilities are depicted as deserving pity. 30 A. D. Rangarajan, “Differently-Abled Indeed!” The Hindu, September 27, 2012, www.thehindu.com/ todays-paper/tp-national/differentlyabled-indeed/article3940538.ece. 31 Staff Reporter, “Decision on Increase in Pension Before March: Kiran,” The Hindu, December 4, 2012. 32 News Today, “Viakalgulaku Rs.1500 Pinchanu” [Rs.1500 pension for the disabled people], Eenadu, August 22, 2012. 33 People with disabilities are considered as patients under this model. 34 News Today, “Robo Cheyuta” [Robotic hand help], Eenadu, August 29, 2012.

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35 36 37 38 39 40

41 42 43 44 45 46

47 48 49 50 51

News Today, “Andatva nivaranaku teeka?” [Vaccination for prevention of blindness?], Eenadu, April 10, 2012. News Today, “Rajata Girisha (Silver Girisha),” Eenadu, September 5, 2012. The Hindu Sports, “Oscar Pistorius Retains the 400m Title,” The Hindu, September 9, 2012. Robert Bogdan, Freak Show: Presenting Human Oddity for Amusement and Profit (Chicago: University of Chicago Press, 1988). Karl Marx, Capital, vol. I (New Delhi: Left World, [1887] 2010). Vincent Mosco, The Political Economy of Communication (London: Sage, 1996); Denis McQuail, “Publication in a Free Society: The Problem of Accountability,” Comunicarao e Sociedade 7 (2005), 235–252: Robert W. McChesney, Ellen Meiksins Wood and John Bellamy Foster, eds., Capitalism and the Information Age: The Political Economy of the Global Communication Revolution (New York: Monthly Review Press, 1998); Edward S. Herman and Noam Chomsky, Manufacturing Consent: The Political Economy of the Mass Media (New York: Pantheon, [1988] 2002). Marx, Capital. Sandra J. Levi, “Ableism,” in Encyclopedia of Disability, ed. Gary L. Albrecht (Thousand Oaks, CA: Sage, 2006), 1–3. Sampadakeeyam, Vaartha Teja, (Hyderabad: NPDO Publishers, 2013). Interview with Telugu Newspaper Editor, January 31, 2013. Interview with Human Resource Manager, Telugu News Channel, November 19, 2013. Beth Haller, “Journalists Should Learn to Carefully Traverse a Variety of Disability Terminology,” National Center on Disability and Journalism, January 7, 2016, http://ncdj.org/2016/01/journalists-should-learn-to-care fully-traverse-a-variety-of-disability-terminology. Interview with an advocate and disability rights activist, February 17, 2013. Parliament of India, Rights of Persons with Disabilities Bill—2016, Passed by Parliament of India, December 16, 2016, http://pib.nic.in/newsite/PrintRelease.aspx?relid=155592. James I. Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkeley: University of California Press, 2000). Lennard Davis, End of Normal: Identity in Biocultural Era (Ann Arbor: University of Michigan Press, 2013). Celeste Condit, “Hegemony in Mass-Mediated Society: Concordance about Reproductive Technologies,” Critical Studies in Media Communication 11, no. 3 (1994): 205–223.

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3 DECOLONIZING THE DYNAMICS OF MEDIA POWER AND MEDIA REPRESENTATION BETWEEN 1830 AND 1930 Australian Indigenous Peoples with Disability John Gilroy, Jo Ragen and Helen Meekosha Introduction The newspaper industry is one of the oldest forms of news media in Australia. Many media studies scholars state that newspapers are an important source to understand how “our history can be accessed and interpreted.”1 Recent media studies involving Indigenous2 peoples3 and people with disability4 have shown that the news media provides a source of data for exploring how minority groups have been portrayed and treated within Australian popular culture since colonization. The news media and more recently social media play a vital social function in the dissemination of local and national information via radio, newspapers, magazine, television and more recently the Internet. News media provides information for local citizens, migrants and foreigners about issues pertaining to the economy, politics, fashion and local and national cultural identity.5 The centralized ownership of the news media enables the industry to maintain its stronghold and limitless reach, representing and influencing the public discourse on matters the media deem important. It is for this reason the news media is often described as essential for “collective identity formation” in nation states around the world.6 The links between colonization and disability among Indigenous populations have been well documented.7 Schofield and Gilroy8 define colonization as a process of coerced alienation of Indigenous peoples that serves the interests of the growing Western metropole. Scholars have long argued that the Western metropole, through its Eurocentric lens, defined and categorized the “cultural/racial other” (Indigenous/Aboriginal/native) was different and inferior to white European races.9 Decolonization, on the other hand, remains the “ongoing, radical resistance against colonialism that includes struggles for land, redress, self-determination, healing historical trauma, cultural continuance and reconciliation.”10 The World Health Organization reports there are around 370 million Indigenous peoples in at least 70 countries around the world.11 In Australia, Indigenous people represent over half a million people,12 around 3 percent of the nation’s population. When the British invasion of Australia occurred in 1788, the colonial elite explored and stole the lands and resources of Indigenous peoples. The British elite did not respect Indigenous peoples as humans or as custodians. The ensuing wars between the British elite and the Indigenous peoples persisted for over a century. Indigenous peoples 35

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were subject to kidnap, rape and murder in the name of European imperialism.13 In effect, Indigenous peoples are among the unhealthiest and most disadvantaged people in Australia.14 Australian Indigenous peoples with disability have received limited attention in disability studies and media studies. To the authors’ knowledge, there is no known research on how Indigenous peoples with disabilities were portrayed and treated in the colonial news media in any settler society. Taking a decolonizing approach to disability studies involves creating a space to understand the present situation of Indigenous people from the perspective of Indigenous people themselves. This approach involves a deconstruction of the embodiment of social, political, economic and cultural processes of colonization. Part of the process of a decolonizing inquiry is to critique Western constructs and conceptions of disability and ill health. By using Australia as a case study, this chapter aims to illustrate the representation of Indigenous people with a disability in the print mass media throughout the first hundred years of newspaper publications in Australia from the 1830s to 1930s. This period was chosen as it followed the colonial government’s relaxing censorship of the news media.15 This study is positioned within a decolonizing methodological framework, building upon the works undertaken by Gilroy16 and Gilroy, Donelly, Colmar and Parmenter.17 The research demonstrates how early media reporting played an important role in supporting colonial power structures such as the courts and policing, early welfare instructions and institution systems such as prisons. It also shows how the use of disability tropes in the print press supported discourses of Indigenous inferiority and backwardness.

Print News Media and Minority Groups Following the British invasion of Australia in 1788, many settlers migrated away from the city regions to set up large horticultural and agricultural outstations, becoming one of the primary industries for Australia’s growing colonial economy. The first newspaper, the Sydney Gazette and New South Wales Advertiser, was published in March 1803 to improve the distribution of government official information throughout the colonies and outstations. The Australian (not the current newspaper with that title), the Monitor and the Tasmanian and Port Dalrymple Advertiser were the first known published provincial newspapers in Australia.18 Australia’s longest published newspaper, the Sydney Morning Herald, was first published in 1831, becoming the first popular daily newspaper in Australia. The European elite brought cultural values of normative health and human functioning, directly connected to Western biomedicine and free-market capitalism. The eugenics movement, a Eurocentric set of beliefs, ideals and practices that aims to improve the genetic quality of the human population, was well advanced in Westernized countries between 1880s and the mid-twentieth century and overlapped the period under study in this chapter. In Australia, many institutions and asylums were established under law, such as the Queensland Benevolent Asylums Ward Act 1861 and “lunatic persons” became the responsibility of the prison system during the late 1800s. Yet many Indigenous peoples regard the Western biomedical approach to pathologically labeling and categorizing people by their perceived disabilities as part of an attempt to further alienate Indigenous peoples.19 Much research suggests that there exists no word in any Indigenous communities’ language equivalent to the English words “disability” or “impairment.”20 Media scholars have used framing theory to demonstrate how information about Indigenous people influences and frames public attitudes and places Indigenous people within a particular “field of meaning.” Marcia Langton’s21 essay on the representation of Australian Indigenous peoples argues that the news media was used as a tool to create an imagined community of a “white Australia” as normative, reflecting the hegemony of eugenics. For example, Figure 3.1 shows how one newspaper, the Bulletin, represented and supported the capture and trading of Indigenous peoples as free labor for the colonialists’ farms and homesteads. 36

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Figure 3.1 Cartoon depicting a slave trader luring buyers to his “niggers for hire” stand, Bulletin 6, no. 6 (April 30, 1881).

Indigenous peoples are often represented in the context of “civil disorder” to generate a moral panic about “race relations” in Australia. Many political and social issues, such as land rights, welfare policy, alcohol, crime and unemployment have been portrayed in a way that represents and treats Indigenous peoples as a social problem.22 Even though Indigenous people’s voices are included in some news stories, their views are often obscured or cordoned off by the views of white, middle-class professional peoples and organizations. Bullimore describes this issue well: As a result of this domination, interpretations and evaluations of news events are routinely embedded in the ideology of the white elite. When ethnic or minority voices are heard in the media—if they are heard at all—they are found to be less credible than elite speakers, such as police and government officials.23

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Likewise, Ellis and Goggin’s24 review of media research on disability in the news media shows that people with disability were portrayed as a social problem in similar ways to Indigenous people. Zhang and Haller25 observed that the negative representation of people with disability in the mass media contributes to their oppression by reinforcing existing, or creating new, stereotypes and stigmas associated with disability and impairment. Thus, disability stereotypes that medicalize, patronize and dehumanize people with disabilities perpetuated in the mass media aim to normalize hegemonic ideologies. These objectifying representations and depictions of people with disability contribute to their social isolation, thus reinforce the hegemonic values of ableism as normative.26

Critical Disability Studies at the Cultural Interface Relying on newspaper publications in the period in question inevitably limits our analysis to material written only by the white affluent classes. However, these publications in the hands of the powerful elite frame popular meanings about Indigenous peoples and are thus an important source of information. One of this chapter’s authors claims “disability studies’ differentiation between chronic illness, impairment and disability cannot usefully explain the contemporary lived experience of indigenous peoples.”27 Scholars28 have demonstrated that disability studies regularly assume universality in their middle-class colonialist standpoints, thus imposing normativity of white non-disabled bodies. By adopting Indigenous research and decolonizing methodologies we critically deconstruct how Indigenous people with disability were represented and treated at the cultural interface of Indigenous and non-Indigenous peoples and critically reflect the implications this had for Indigenous peoples with disabilities. The recent turn to critical disability studies seeks to be “self-aware of its own historicity” and “engage in dialogue among cultures” while undergoing a process of intellectual decolonization.29 This requires developing methodological frameworks that privilege Indigenous peoples and are developed either by or in cooperation with Indigenous peoples. An example of this paradigm shift is work by Gilroy30 that explores the applicability of Indigenous standpoint theory (IST) in disability studies. IST is not an “Indigenous” way of doing research. Rather it is a researcher’s positionality that prioritizes the personal experiences of Indigenous peoples in the research process.31 As Indigenous (author one) and non-Indigenous with disability (authors two and three) scholars, we position ourselves at the cultural interface as defined by Martin Nakata.32 In previous papers, Gilroy33 has demonstrated that critically exploring the cultural interface helps us understand why many problems experienced by Indigenous people with disability have persisted for many decades. The cultural interface is the domain where the trajectories of Indigenous and non-Indigenous people’s histories, cultures, ideologies and practices regarding disability and impairment intersect creating the social environments that impact on Indigenous people’s lives. The cultural interface is a metaphysical world where Indigenous and non-Indigenous peoples constantly interact and negotiate matters pertaining only to Indigenous people’s lives. Nakata states that, “for in this space there are so many interwoven, competing and conflicting discourses that distinguishing traditional from non-traditional in the day-to-day is difficult to sustain even if one were in a state of permanent reflection.”34

Indigenous People with Disability in the Colonial Press The National Library of Australia’s Trove digitized newspaper database was searched for Australian newspaper articles published between the 1830s and 1930s. This period was selected as it marks one century of the “freedom of the press” following the government lifting of press censorship in 1824.35 It was also the period when numerous newspapers were published on 38

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a weekly basis and witnessed Australia becoming a Federation of States under the British Commonwealth in 1901. Near the end of the nineteenth century there were 599 metropolitan daily and weekly, suburban and country newspapers and magazines published in Australia. Of these, 466 were published in country areas.36 Tables 3.1 and 3.2 show the key search words and their meanings used in the analysis. The articles selected used disability terms in relation to Indigenous peoples. The search terms were obtained from the literature and our lifelong experiential knowledge on disability and Aboriginal affairs. The meanings and synonyms of these terms were searched in a nineteenth-century English dictionary to ensure the meanings are the same in the research period. Given that there were no adequate Australian published dictionaries for that period, the Oxford dictionaries published in London were used for this study. Many of the articles obtained have used more than one of these search terms.

Table 3.1 Terms describing disability searched in the newspapers database, 1830–1939 Search term

Meaning

Asylum

An institution for receiving, maintaining and, so far as possible, ameliorating the condition of persons suffering from bodily defects, mental maladies or other misfortunes

Blind

No, or limited, sense of visual capabilities and sight

Cripple

One who creeps, halts or limps; one who is partially or wholly deprived of the use of one or more of his limbs; a lame person

Deaf

Lacking the sense of hearing; insensible to sounds

Deformed/ deformity

To mar the natural form or shape of; put out of shape; disfigure, as by malformation of a limb or some other part of the body

Dumb

Blind and deaf; the two words are connected. The origin sense being then “dull of perception”

Feeble

Lacking strength; lacking capacity for the forcible action or resistance; weak; specifically reduced to a state of weakness as by sickness or age

Handicap

To place at a disadvantage by the imposition of any embarrassment, impediment or disability

Imbecile

Mentally feeble; fatuous; having mental faculties undeveloped or greatly impaired

Impaired

To make worse; diminish in quantity, value, excellence strength or any other desirable quality; deteriorate, weaken, enfeeble as to impair the health or character

Infirm

Be infirm or sick; to weaken enfeeble; not sound in health; impaired in health or fatality

Insane

Unsound in the mind; unsound or deranged in the mind

Lame

Bruised or maimed; crippled or disabled by injury to or defect of a limb or limbs

Lunatic

Mad; moonstruck, insane; affect by lunacy; periodically insane, with lucid intervals; crazy

Mental

Belonging to or characteristic of the intellect; as the mental power or faculties

Mute

Dumb; incapable or utterance; not having the power of speech

Paralyse/ paralyze

To render helpless, useless or ineffective, as if by paralysis

Physical defect

A recognized defect of the physical body; diagnosed defect

Stupid

In a state of stupor; having the faculties deadened or dulled; stupefied, either permanently or temporarily; lacking ordinary activity of mind

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Table 3.2 Terms describing Australian Indigenous peoples searched in the newspapers database, 1830–1939 Search term

Meaning

Aboriginal

The first inhabitants; pertaining to Aborigines

Aboriginary An Aboriginal inhabitant Aborigine

The primitive inhabitants of a country; the people living in a country at the earliest period of which anything is known; the original fauna and flora of a given geographical area

Black

A member of one of the dark-colored races; a negro or other dark-skinned person

Blackfellow A black person; a negro; an Aboriginal inhabitant Blacky

A black person; a negro

Darky/ie

A human being with dark colored skin

Gin

An Australian native woman; an old woman generally

Indigenous

Born or originating in a particular place or country

Native

Of Indigenous origin or growth; not exotic or of foreign origin or production belonging by birth

Nigger

A native of the West Indies or one of the Australian Aborigines

Piccaninnies A baby; a child; especially, the child of a member of any negroid race

A total of 75 articles were obtained. Five articles were excluded as the term “native” was used to describe the birthplace of a European, such as “a native of London,” rather than an Indigenous person. Four articles were excluded due to the article text being unreadable. A total of 66 newspaper articles were included in this study. Table 3.3 shows the number of newspaper articles found for each decade from 1830. The largest number of matching articles were published in the 1880s and 1890s. The main theme identified from the analysis of the news articles examined focused on labeling and categorizing Indigenous peoples within a Eurocentric medical framework. The articles commonly used the following phrases to describe an ab-normal Indigenous person: • • • • • • • • • •

“Aboriginal cripple”37 “old lubra38 who was blind”39 “old black cripple”40 “the gin was a cripple”41 “imbecile Aboriginal”42 “partially imbecile Aboriginal native”43 “old blind native woman”44 “deaf and dumb Aboriginal”45 “The native was an old helpless inoffensive cripple”46 “blind bobby”47

There are five elements to this main theme presented under the headings below: disability a consequence of Indigenous inferiority; pathways to welfare; protection; criminalization; institutionalization.

1. Disability a Consequence of Indigenous Inferiority This first element framed the prevalence and incidence of impairment in Indigenous communities as a consequence of the Indigenous people’s “inferiority/inability” to prevent, or adapt to, the 40

Media Power and Representation 1830 –1930 Table 3.3 Number of relevant newspaper articles per decade, 1830s–1930s Decade

Number of articles

1830s

0

1840s

1

1850s

2

1860s

5

1870s

4

1880s

15

1890s

22

1900s

7

1910s

2

1920s

7

1930s

1

TOTAL

66

European invasion. Disability was discussed as a consequence of the frontier wars during the first century of European invasion.48 For example, one article49 stated that “one native who was humpbacked and a cripple for life, as a result of injuries, understood locally to have been inflicted some time ago by a white man by means of a tomahawk.” Some articles50 presented statistics on the prevalence of impairments in the local Indigenous communities. Similarly, an interview with John Alce about the implications of European invasion on Indigenous peoples made the following statement about the spread of diseases and represents Indigenous people’s approaches to impairment and disability as inferior and archaic: The ranks of the island natives, numbering between two and three hundred, have been decimated by a dire scourge, the effects of which are still visible on both old and young. Mr. Markey gives a harrowing description of some of the sufferers, who in their appalling ignorance are indifferent to the consequences of the disease. With these unfortunates, as well as seven blind men and twelve deaf and dumb children.51 A letter from a government minister52 published in 1889 reported that “new-born children are frequently killed by their mothers—of twins the female, or if one sex the weaker, also all the children who are feeble or cripples and many bastards.” Some articles mocked Indigenous traditional approaches to defining and responding to impairments. For example: A well-known figure in the streets of Palmerston for many years past—Cripple Jimmy, a Larrakeyah native—died suddenly … Jimmy’s sudden taking off will not tend to increase their confidence in the white man’s methods of healing. This is to be regretted, as the distrust entails much needless suffering. Had Jimmy chosen to see the doctor earlier, he might still have been alive, and as well as his deformity would ever permit him to be.53

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Some articles discussed the Indigenous cultural approaches to supporting Indigenous people that were experiencing the physical effects of illness and disease.54 For example, Leckie55 published a newspaper article titled “Black Magic,” which mocked and ridiculed Indigenous healers as inferior.

2. Pathways to Welfare Many articles used impairment to frame Indigenous people as dependents, unproductive and a resource burden on colonial farmsteads and outstations. While constructing Indigenous people as a resource burden, many articles reported on the allocation of “government rations” and “handouts” to Indigenous people with impairments as fulfilling their Christian duties.56 Some colonial farm-station managers published opinion pieces to voice their dissatisfaction of owners and managers of colonial outstations who provided compensation to Indigenous people with impairment in order to retain the services of Indigenous peoples as laborers.57 An outstation manager’s letter to the Editor linked the “slaughter” of Indigenous peoples to the allocation of welfare to Indigenous peoples with disabilities on their outstation farmstead: When they [Indigenous people] are on the station it is cheaper to feed them than to let them help themselves … this mob of cousins, aunts, blind uncles, etc., have to be looked after [by the station] so as to retain the services of two or three good ones [Indigenous people], of which there are still a few left in spite of the slaughter there has been lately.58 The authors of these articles connected the prevalence of impairments to their desires of capitalism to expand the global colonial empire within a Christian philosophy. Below is an example from a farm-station manager’s letter to the editor expressing his dissatisfaction on how the government is treating Indigenous peoples with disabilities: Frequently I observed old, decrepid [sic] natives and absolutely blind, of no possible use to the station—useless and only waiting for the grave to receive them—all kindly treated, well looked after, generously fed, and provided with rugs at the station’s cost. I will not say that there are not now and then instances of unnecessary hardship and gross cruelty inflicted on the natives by their “bosses,” just as there are instances of unreasoning cruelties inflicted in the various social strata of civilization.59 The settlers were described as being generous by fulfilling their “duties” of Christianity. In effect, the handouts given to Indigenous peoples were a means of pacifying the Indigenous peoples and making the settlers feel like they were fulfilling their duties. Thus the violence of colonization was immune to scrutiny both through the pathologization of Indigenous people and by the provision of minimal levels of welfare.60

3. Protection The articles represented the Indigenous peoples as tractable and in need of protection and position, the Europeans as their “protectors.” For example, in an article titled “the last of their race”61 the author discussed how Indigenous peoples were removed from their traditional lands and relocated to farms and out-stations. [T]he small remnant of the Aborigines of Van Diemen’s Land have been withdrawn from Flinders Island … They consist of 18 adult men, 22 adult women, 5 boys and 5 42

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girls … one is nearly blind, one is imbecile, that of the remaining five … two of them having been pretty regularly employed as boatmen, and one having for years done the duty of cowherd, with a steadiness which would have been praise-worthy in a man bred to labor. They have all lived about in civilized habits.62 The articles that discussed “protection” often represented the Europeans as the “saviors” of Indigenous people.63 Some articles referenced how Indigenous geographic displacement is impacting on Indigenous people’s livelihood. For example, an opinion article from 1898 similarly stated that: [T]he government … should protect them [Indigenous people] from suffering starvation through legislation. Game [wild fauna] is scarce in the district, many of the blacks are old and decrepit, some even blind … as their protector [government] should recommend that steps be taken to ameliorate their condition.64 Protection and welfare worked hand in hand. An opinion article in the Western Australian stated: Europeans who take a sympathizing interest in the race of human beings whose primitive habits and wretchedness we are bound, as their superior, to improve and ameliorate so far as we are able. It has been a mistake of longstanding on the part of the government—a mistake which I have long vainly endeavored to have removed—the neglect, socially speaking, of the feeble, the sick and the blind among our Aborigines.65

4. Criminalization of Indigeneity and Disability Indigenous people with disabilities who were involved in the criminal justice system featured strongly in the material collected. Some Indigenous people with disabilities66 who were involved in the criminal justice system were identified by their impairment, such as “deaf Johnny, an attempt to commit a capital offence”67 or “mad Tommy”68 or by both their impairment and indigeneity, such as “Aborigine declared insane.”69 For example, an article about a murder70 stated that “there was no sign of lameness or any other physical defect about [the accused].” An article titled “halfcaste Aborigine acquitted”71 reported that “the inspector general of the insane (Dr. Bently) said that Johnnie was sane on August 23 but must have been insane on the date of the murder.” Similarly, an article titled “Aborigine Declared Insane”72 stated that “Thomas Shaw, the half-caste Aborigine… has been classified as insane at the time of the tragedy.” Prisons were said to have an “invasion of Aborigines and lunatics.”73 Indigenous people with disability who were involved in the criminal justice system were also represented as dependent on handouts from settler communities. For example, a magistrate stated in an opinion piece74 that some Indigenous people with disability were committing crimes, such as theft, because of disadvantage. He gave the following account of a convicted Indigenous person: I was resident magistrate of Bunbury … I know the native, Banyan. He came to my house with other natives in 1858. He … was partially deformed. … he was brought here into court, and appeared helpless and decrepid [sic] … [and] began to draw rations as a sick native in 1859.75 Treatment reflected the use of the medical model of “impairment” in the criminal justice system. The type and severity of a person’s impairment were assessed and diagnosed under the European medical model of impairment and functioning. For example, a news report of a court hearing in 43

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1897 described “the case of an Aboriginal girl ‘Bluey’ … who has the appearance of an imbecile [who] was remanded for medical examination.”76 Similarly, a report of a convicted Indigenous person stated that “the jury returned a verdict of manslaughter, but stated that it believed that the accused was insane at the time he committed the deed.”77 Indigenous people with disability in the criminal justice system were discriminated against, humiliated and disrespected and they were neither treated as equal to an able-bodied Indigenous person or a European. An opinion piece mocked an Indigenous person with impairment who provided evidence in a criminal court hearing against a European suspected of property theft: Can it be possible that the South Australian Government accept the evidence of Aborigines in a court of justice! I notice in your police reports that a blackfellow gave evidence in a portmanteau stealing case, and (tell it not in Gath) that darkie was deaf and dumb! Why, he might point to a portmanteau and mean a saddle, or a pair of boots, or any other article made of leather.78 Another incident in a court setting demonstrated how an Indigenous person was not properly supported in providing evidence against a European who was suspected of selling alcohol to Indigenous people. The author of the article described this event as “funny”: One of the funniest things in the way of Police Court work was the attempt made on Monday last to convict an Aboriginal grog-seller on the “evidence” of a deaf and dumb black-fellow, who (to add to the singularity of the thing) had his peculiar signs and antics interpreted by a Chinaman. Mr. Knight stood it for a while, but when the ludicrous nature of the joke had been played out he advised the police to look round for testimony that was more reliable. A deaf and dumb blackfellow assisted by a Chinaman in an Australian police court is not often met with.79 The criminal justice system openly discriminated against Indigenous people with impairment due to cultural and language differences: “[T]he jury found the accused was unable to understand the proceedings owing to his ignorance of English. They also found him to be insane. He was committed to the lunatic asylum during the Governor’s pleasure.”80 The police and military institutions recruited many Indigenous people as police officers to maintain law and order within Indigenous communities. This process of divide and rule was also a means of controlling Indigenous resistance against the spread of European rule. A newspaper article from 1865 reported that “a black-fellow—a cripple—had left Mr Dutton’s station, and was shortly afterwards met by the black police … [and] was immediately shot dead.”81 Similarly, in 1875 an article described how an Indigenous person with impairment was framed for a crime: The case of Nabbagee Tom … a poor old cripple, who could hardly speak or hear, brought down from the North West because a smart native assistant, Jim Crow, had knocked an unintelligible confession out of him. Jim Crow and some white police, go out in a searching party. They see two blacks, and gallop them down.82

5. Institutionalization of Indigeneity and Impairment Analysis of the data suggested that the institutionalization of Indigenous peoples with disabilities was discussed in three ways. 44

Media Power and Representation 1830 –1930

First, the articles reported the advancements of the psychological sciences and the impact these “advances” had for Indigenous people. Indigenous peoples who were accused or convicted of a crime were assessed by a medical professional in psychological sciences. Indigenous people with impairment were imprisoned under the Insanity Act 1884 for people regarded as “insane.” Wallinjera an Aboriginal belonging to the Uranna tribe … inquiries showed that the accused was once in Woogaroo, and he was still subject to delusions. The judge then took evidence on the point as to accused’s sanity at the present moment, the principal witness being Dr Voss; and the jury, after fifteen minutes consideration, found him insane. The judge then directed the accused to be kept in strict custody in Rockhampton Gaol … until death with as provided for by the Insanity Act of 1884.83 Many Indigenous people with impairment were institutionalized in “destitute asylums” or “mental asylums.” Some articles reported on the number of “asylum inmates” by Indigeneity, age, sex and type of impairment.84 Second, segregating Indigenous peoples onto reserves, outstations or missions. This practice is linked to the power to “protect” (category 3 above) Indigenous people with impairment. Many organizations established to “protect” and represent Indigenous peoples, such as the Aborigines’ Friends’ Society, reported on the Indigenous “inmates” (age, sex, impairment, etc.) at some missions. Many journalists and writers85 of the time reported on their “travels” to Indigenous missions. For example, a letter to the editor86 stated that “these reserves should be under the control of specially qualified white protectors … [to enable Indigenous people to care for] the old, the lame or the blind.” Third, some Indigenous people who were diagnosed as either “deaf,” “dumb” or “blind” were placed in the Deaf and Dumb Institution or the Deaf and Dumb and Blind Institute.87 During the 1890s, these two institutions reported on their services and “inmates” in the print media. The Deaf and Dumb Institution88 would only accept Indigenous people if the Aborigines Protection Board would allocate funding.

The Future of Disability and the News Media The field of disability studies has until recently neglected the people with disability outside of the non-metropole. This chapter is a contribution to the project of decolonizing disability studies by critically analyzing the representations of Australian Indigenous peoples with disabilities in the colonial print media. This was achieved using Martin Nakata’s standpoint theory, the cultural interface and supports the new paradigm emerging from critical disability studies. Our analysis of the colonial newspapers has identified five main discourses in the representation of Indigenous people with disability within the theme of a Eurocentric medical framework: 1. 2. 3. 4. 5.

Disability a consequence of Indigenous inferiority. Pathways to welfare. Protection. Criminalization of Indigeneity and impairment. Institutionalization of Indigeneity and impairment.

The findings of this study have implications for disability and Indigenous media studies. Our findings show that the Australian media was used as a tool in the first 100 years of settlement to impose a white able-bodied normalcy and racial superiority in a colonized nation state. The print 45

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press acted to support white power structures and non-Indigenous occupation of Indigenous lands and resources. The study adds support to Gilroy and Donelly’s89 claim that disability research inherently serves the interests of the non-Aboriginal affluent classes by falsely justifying “whiteness” and “ability” as normative. Gilroy stated that: There are volumes of knowledge, a whole epistemological library in fact, on Indigenous people with a disability. This knowledge is not owned by Indigenous people, rather this library operates as a resource for non-Indigenous researchers and government decision makers to legitimate themselves as the controllers and bearers of the “truth” on disability.90 During the period under consideration, the media helped create and portray an imagined “superior being” (white/male/European/able-bodied) and a “non-superior being” (black/Indigenous/disabled/ impaired-bodied). This was done in two ways. First, the Indigenous peoples were “culturally othered” as the inferior human race when contrasted to predominantly European communities. As such, eugenic philosophies influenced both media and public policy that encouraged the institutionalization of impaired persons. Professionals (white middle classes, medically trained men) were positioned as experts to determine the inclusion or exclusion of “defectives” influencing the removal of “defectives” from society. Impairment and indigeneity counted as “defective” within this dominant hegemony. The findings have implications for future research in critical disability studies, media studies and colonial history. The findings support that we need to read disability differently,91 not only in texts but in the media. The findings supports Meekosha’s claim that “we cannot meaningfully separate the disabled subaltern from the colonized subaltern.”92 The articles authors represented in this study were focused on labeling and categorizing Indigenous peoples on the basis of their Indigeneity and impairments. This was done in the context of European “superiority.” The newspaper articles categorized, represented and treated the Indigenous and the disabledbodied as one embodied identity. As such, Indigenous peoples with impairments were “doubly labeled” within a white medicalized and racialized system that inscribed and normalized Indigeneity and functioning. The articles represented Indigeneity on the basis of radicalized stereotypical body features, such as skin color and the practice of “traditional” cultures and languages. This double labeling resulted in the criminalization and institutionalization of Indigenous people with a disability as a “social problem” to be addressed within taken-for-granted Western practices, thus reinforcing the normalcy of colonization.

Notes 1 Victor Isaacs and Rod Kirkpatrick, Two Hundred Years of Sydney Newspapers: A Short History (Richmond, NSW: Rural Press, 2003). 2 We use the term Indigenous in this chapter to include both Aboriginal and Torres Strait Islander peoples. 3 Melissa Sweet, Luke Pearson and Pat Dudgeon, “@IndigenousX: A Case Study of Community-Led Innovation in Digital Media,” Media International Australia 149, no.1 (2013): 104–111; Kerry McCallum, Lisa Waller and Michael Meadows, “Raising the Volume: Indigenous Voices in News Media and Policy,” Media International Australia 142, no.1 (2012): 101–111; Marcia Langton, Well I Heard It On the Radio and I Saw It On the Television (Sydney: Australian Film Commission, 1993). 4 Katie Ellis and Gerard Goggin, Disability and the Media (Basingstoke, UK: Palgrave Macmillan, 2015). 5 Ellis and Goggin, Disability and the Media. 6 Philip Smith and Tim Phillips, “Collective Belonging and Mass Media Consumption: Unraveling How Technological Medium and Cultural Genre Shape the National Imaginings of Australians,” Sociological Review 54, no. 4 (2006): 818–846. 7 John Gilroy, Jo Ragen and Helen Meekosha, “Conceptual Framework for Policy and Research Development with Indigenous Persons with Disability,” Journal of Australian Aboriginal Studies no. 2 (2013): 42–58; Helen Meekosha, “Decolonising Disability: Thinking and Acting Globally,” Disability & Society 26, no. 6

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8 9

10 11 12 13

14 15 16

17 18 19

20 21 22 23 24 25 26 27 28

29 30 31

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(2011): 667–682; David Hollinsworth, “Decolonizing Indigenous Disability in Australia,” Disability & Society 28 (2013): 601–615; Julie A. King, Mark Brough and Marie Knox, “Negotiating Disability and Colonisation: The Lived Experience of Indigenous Australians with a Disability,” Disability & Society 29 (2014): 738–750. Toni Schofield and John Gilroy, “Indigeniety and Health,” in A Sociological Approach to Health Determinants, ed. Toni Schofield (Cambridge, UK: Cambridge University Press, 2015), 99–122. Hollinsworth, “Decolonizing Indigenous Disability in Australia”; Linda Tuhiwai Smith, Decolonizing Methodologies: Research and Indigenous Peoples (London: Zed Books, 1999); Edward Said, Orientalism (London: Penguin, 1995); Shaun Grech and Karen Soldatic, “Decolonising Eurocentric Disability Studies: Why Colonialism Matters in the Disability and Global South Debate,” Social Identities 21, no. 1 (2015): 6–21. Cameron Greensmith, “Pathologizing Indigeneity in the Caledonia ‘Crisis,’” Canadian Journal of Disability Studies 1, no. 2 (2012): 14–42. Ethel Alderete, The Health of Indigenous People (Geneva: World Health Organization, 1999); United Nations, State of the World’s Indigenous Peoples (New York: United Nations, 2009). Australian Institute of Health and Welfare, The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander People: An Overview (Canberra: Australian Institute of Health and Welfare, 2011). Richard Broome, Aboriginal Australians: A History Since 1788, 4th ed. (Crows Nest, NSW: Allen & Unwin, 2010); Henry Reynolds, Dispossession: Black Australians and White Invaders, Australian experience (Sydney: Allen & Unwin, 1989). Australian Institute of Health and Welfare, The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander People. Isaacs and Kirkpatrick, Two Hundred Years of Sydney Newspapers; Rhonda Jolly, Media Ownership and Regulation: A Chronology Part One: From Print to Radio Days and Television Nights (Canberra: Parliamentary Library, 2016), 2. John Gilroy, “The Theory of the Cultural Interface and Indigenous People with Disabilities in New South Wales,” Balayi: Culture, Law and Colonialism 10 (2009): 44–59; John Gilroy, “The Participation of Aboriginal Persons with Disability in Disability Services in New South Wales, Australia” (PhD thesis, University of Sydney, 2012). Gilroy et al., “Conceptual Framework for Policy and Research Development.” Isaacs and Kirkpatrick, Two Hundred Years of Sydney Newspapers. Gilroy et al., “Conceptual Framework for Policy and Research Development”; Gilroy, “The Theory of the Cultural Interface”; Neil Thomson and Chris Snow, Disability and Handicap Among Aborigines of the Taree Area of New South Wales (Canberra: Australian Government Publishing Service, 1994); Lindsay Gething. “A Case Study of Australian Indigenous People with Disabilities,” Australian Disability Review no. 2 (1995): 77–87. Hollinsworth, “Decolonizing Indigenous Disability in Australia”; Grech and Soldatic, “Decolonising Eurocentric Disability Studies.” Langton, Well I Heard It On the Radio. Howard Sercombe, “The Face of the Criminal Is Aboriginal,” Journal of Australian Studies 19, no. 43 (1995): 76–94. Kim Bullimore, “Media Dreaming: Representations of Aboriginality in Modern Australian Media,” Asia Pacific Media Educator 6 (1999): 72–81. Ellis and Goggin, Disability and the Media. Lingling Zhang and Beth Haller, “Consuming Image: How Mass Media Impact the Identity of People with Disabilities,” Communication Quarterly 61, no. 3 (2013): 319–334. Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). Meekosha, Decolonising Disability. Gilroy et al., “Conceptual Framework for Policy and Research Development”; Grech and Soldatic. “Decolonising Eurocentric Disability Studies”; Meekosha, “Decolonising Disability”; Karen Soldatic, “Postcolonial Reproductions: Disability, Indigeneity and the Formation of the White Masculine Settler State of Australia,” Social Identities 21, no.1 (2015): 53–68. Helen Meekosha and Russell Shuttleworth, “What’s So ‘Critical’ About Critical Disability Studies?” Australian Journal of Human Rights 15, no. 1 (2009): 47–76. Gilroy, “The Theory of the Cultural Interface”; Gilroy, “The Participation of Aboriginal Persons.” Ngahiiti Faulkner and John Gilroy, “Encountering Narratives and Narrating Encounters: Comparing and Contrasting Kaupapa Maori and Indigenous Standpoint Theories” (paper presented at the International Indigenous Development Research Conference Auckland, NZ, November 25–28, 2014). Martin Nakata, “The Cultural Interface: An Exploration of the Intersection of Western Knowledge Systems and Torres Strait Islander Positions and Experiences” (PhD thesis, James Cook University, 1997); Martin

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33

34 35

36 37 38 39 40 41 42 43 44 45 46 47 48 49 50

51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66

67 68 69 70 71

Nakata, “Indigenous Knowledge and the Cultural Interface: Underlying Issues at the Intersection of Knowledge and Information Systems,” IFLA Journal 28, no. 5–6 (2002): 281–291. Gilroy, “The Theory of the Cultural Interface”; Gilroy, “The Participation of Aboriginal Persons”; John Gilroy, “History of Aboriginal People with Disability in NSW: How Are Aboriginal People with Disability Positioned and Represented in the NSW Disability Services Sector?” Interaction: Special Edition on Aboriginal People with Disability 24, no. 1 (2010): 6–29. Nakata, “Indigenous Knowledge and the Cultural Interface.” Willa McDonald, “Precursor to the Profile: The Character Sketches in Colonial Australia,” in Profile Pieces: Journalism and the “Human Interest” Bias, ed. Sue Joseph and Richard Lance Keeble (New York: Taylor & Francis, 2015), 47. Henry Mayer, The Press in Australia (Melbourne: Lansdowne Press, 1964), 10, quoted in Jolly, Media Ownership and Regulation, 5. “Collision on the Western Railway,” Empire, September 30, 1868, 3; “The Courier,” Brisbane Courier, September 25, 1868, 2. Lubra means “Aboriginal woman.” “Smallpox Among the Aborigines,” Maitland Mercury and Hunter River General Advertiser, September 23, 1882, 2. “District News,” Maitland Mercury and Hunter River General Advertiser, October 17, 1882, 7. “News and Notes,” West Australian, August 2, 1898, 4. “Sifting, Local and Otherwise,” Northern Territory Times and Gazette, August 28, 1891, 3. “News and Notes,” West Australian, August 14, 1897, 5. “Dark Deeds in a Sunny Land,” West Australian Sunday Times, February 12, 1899, 1. “The Federal Land Tax Review,” Northern Territory Times and Gazette, May 26, 1911, 2. “News and Notes,” West Australian, June 3, 1892, 4. “Western Mail—Christmas Number,” West Australian, November 28, 1898, 2. “Dark Deeds in a Sunny Land”; “Albany Quarter Session,” West Australian, June 25, 1880, 3. “The Forrest River Mission—Return of Mr T. Ormerod, an Interview,” West Australian, February 11, 1899, 10. “The Advertiser,” South Australian Advertiser, February 17, 1860, 2; “The Aborigines Question and Leprosy,” Northern Territory Times and Gazette, March 16, 1900, 2; “News and Notes,” Northern Territory Times and Gazette, August 24, 1900, 3; “Religious News,” South Australian Register, July 1, 1889, 3. “Return of John Alce,” Northern Territory Times and Gazette, January 6, 1923, 5. “Religious News.” “News and Notes,” Northern Territory Times and Gazette, February 12, 1904, 3. “News and Notes,” West Australian, July 18, 1889, 2; “Died Under Choloroform,” Northern Territory Times and Gazette, February 12, 1904, 2. G. Leckie, “Black Magic,” Argus, August 27, 1932, 7. “Our Natives,” West Australian, July 17, 1883, 2; “News and Notes,” Northern Territory Times and Gazette, May 25, 1889, 2. “A Day with North Queensland Blacks,” Brisbane Courier, June 6, 1891, 6. “Correspondence,” West Australian, December 13, 1892, 6. “The Native Question,” Western Mail, September 16, 1899, 67. Grech and Soldatic, “Decolonising Eurocentric Disability Studies.” “The Last of Their Race,” Perth Gazette and Independent Journal of Politics and News, January 29, 1848, 4. “The Last of Their Race.” “Cases for the Aborigines’ Protection Board,” West Australian, February 16, 1897, 6; “North Australia,” Brisbane Courier, September 18, 1926, 9. “Deplorable Condition of Aboriginals,” Warwick Argus, May 14, 1898, 5. “Correspondence,” West Australian, May 29, 1883, 3. “A Day with North Queensland Blacks,” Brisbane Courier, June 6, 1891, 6; “Inquest,” Northern Territory Times and Gazette, December 1, 1888, 3; “News and Notes,” Northern Territory Times and Gazette, July 24, 1903, 3; “Tuesday, July,” West Australian, July 10, 1883, 3; “Echuca,” The Age, December 13, 1924, 26. “The Brisbane Courier,” Brisbane Courier, May 12, 1885, 4; “Queensland News,” Brisbane Courier, May 7, 1885, 5. “Lubra’s Throat Cut,” Argus December 15, 1921, 11. “Aborigine Declared Insane,” Argus, May 31, 1926, 19. “Supreme Court,” West Australian, February 8, 1881, 3. “Murderer Insane—Half-Caste Aborigine Aquitted,” Argus, September 7, 1927, 27.

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Media Power and Representation 1830 –1930 72 73 74 75 76 77 78 79 80 81 82 83 84 85

86 87 88 89

90 91 92

“Aborigine Declared Insane.” “The Passing Show,” Argus, May 4, 1918, 5. “Supreme Court—Civil Sittings,” Perth Gazette and the West Australian Times, May 1, 1874, 3. “Supreme Court—Civil Sittings.” “In the City Police Court,” West Australian, August 10, 1897, 7. “Lubra’s Throat Cut,” Australasian, December 17, 1921, 45. “A New Arrival’s Jottings,” Northern Territory Times and Gazette, February 8, 1879, 2. “Local Court—Truro,” Kapunda Herald, February 9, 1892, 3. “Intercolonial Telegrams,” West Australian, March 3, 1893, 6. “Legislative Assembly,” Brisbane Courier, August 5, 1865, 5. “The Western Australian Times,” Western Australian Times, October 12, 1875, 2. “Rockhampton Supreme Court,” Queensland Times, Ipswich and General Advertiser, April 25, 1895, 3. “The Advertiser,” South Australian Advertiser, January 31, 1859, 2; “The Sketcher: Notes of a Short Stay at Woogaroo,” in Queenslander, August 3, 1872, 8. “Queensland Aboriginals,” Brisbane Courier, June 18, 1895, 2; “The Aborigines’ Friends’ Society,” South Australian Weekly Chronicle, August 14, 1858, 3; “The Aborigines Mission,” Maitland Mercury and Hunter River General Advertiser, August 8, 1882, 4; “An Enthusiastic Missionary,” Northern Territory Times and Gazette, September 20, 1901, 3. “Queensland Aboriginals,” Brisbane Courier, June 18, 1895, 2. “Deaf Dumb and Blind Institution,” Brisbane Courier, May 28, 1864, 4; June 25, 1896, 3; January 30, 1896, 2; January 30, 1896, 2; April 7, 1898, 7. “News and Notes,” West Australian, September 17, 1897, 4. John Gilroy and Michelle Donelly, “Australian Indigenous People with Disability: Ethics and Standpoint Theory,” in Disability in the Global South: The Critical Handbook, ed. Shaun Grech and Karen Soldatic (Cham, Switzerland: Springer, 2016), 545. Gilroy, “The Participation of Aboriginal Persons,” 116. Tanya Titchkosky, Reading and Writing Disability Differently: The Textured Life of Embodiment (Buffalo: University of Toronto Press, 2007). Gilroy et al., “Conceptual Framework for Policy and Research Development.”

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4 FEATURING DISABLED WOMEN IN ADVERTISEMENTS The Commodification of Diversity? Ella Houston

Introduction Traditional analyses of mass media and advertising are frequently perceived as distinct areas of inquiry; the media is typically perceived in terms of communication influence, whereas advertising is commonly linked to consumerist patterns.1 However, thinking about the media and advertising as inextricably linked practices can aid deeper understanding of both fields. Forms of media, for example, newspapers and television, can be seen as targeting a particular type of consumer, for example, “middle England or America.” Therefore, the discourses they carry are deliberately designed to appeal to the presumed characteristics, political concerns and interests of a particular social group.2 Disability studies scholar, David Bolt, suggests that advertisers are increasingly drawn to using disability imagery and models with visible impairments in fashion, beauty and lifestyle campaigns due to the emotional currency traditionally attached to disability in television, film and literature. Considering that disability was almost wholly confined to charity advertisements before the late twentieth century, the growing representation of disability in advertising may be seen as reflective of growth in disability policy, for example, the Americans with Disabilities Act (1990) and the Disability Discrimination Act (1995). However, Bolt suggests that disability representation in advertising is not without problems; advertisers frequently support medical model notions of disability, thus perpetuating the misunderstanding that disabled people are seeking to be “cured” and are unhappy with their impaired bodies.3 In her research on the representation of disabled women in advertising (specifically Dove’s “Campaign for Real Beauty” in 2004), Sarah Heiss adopts a feminist disability studies approach to explain the oppressive ways that advertisers commonly portray gender and disability. For Heiss, representations of disabled women in advertising dominantly pertain to normative beauty and body image standards.4 Writing about the sociocultural violation of the female and impaired body, Helen Meekosha suggests that disabled women’s bodies are constantly required to legitimize their place in society and culture; stereotypical narratives, such as, “overcoming adversity” and “superhuman strength” are attached to disabled women in order to promote commodities and increase attraction towards a brand.5 The role of advertising in constructing sociocultural attitudes and perceptions of disabled women cannot be underestimated. In his foundational writing on disability and advertising, 50

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Harlan Hahn suggests that “acceptable” bodily aesthetics are majorly constructed by the pervasive presence of advertising in society. Hahn proposes that the continued subordination of disabled people in society is partly the result of advertising discourses and imagery. Advertising both supports and constructs sociocultural feelings, anxieties and beliefs towards certain identity groups; moreover, advertising imagery helps to sustain certain beauty standards that are applicable to only a very small portion of society.6 In her research on disability representation in advertising, Beth Haller contends that people with impairments are increasingly more likely to be included in advertisements; however, traditional and oppressive stereotypes attached to disabled people continue to pervade representations.7 Furthermore, Haller and Ralph report that UK advertisers have been less willing to progress the trend of greater disability representation, despite the understanding that the use of disability imagery in advertising positively affects consumerism and the overall brand image.8 My suggestion is that the voices of disabled women must be included in the developing debate surrounding disability representation in advertising. Researchers have richly contributed to the literature surrounding disability imagery, discourses and inclusion in advertising.9 I propose that including the reactions of disabled women to portrayals of disability and gender representation in advertising will further develop embodied knowledge of this phenomenon. Furthermore, by exploring how advertising portrayals of disabled women compare and contrast to the lived realities of women with impairments, critical analysis of the extent to which the makers of ads promote realistic and responsible representations is facilitated. In this chapter, I will first offer an outline of how feminist disability studies theory may be applied to representations of disability and gender in advertising. I will then offer my own interpretations of a selection of advertisements (produced in the United Kingdom or United States, post 2000) featuring disabled women and focus on the responses I collected via semi-structured interviews with five women who self-identified as having mobility impairments: Helen, Joanna, Louise, Mary-Jane and Penelope (pseudonyms are used). The data shown in this chapter was gathered for the purposes of my PhD research—focusing on the representation of disabled women in Anglo-American advertising and the extent to which cultural stereotypes may impact on individual levels of subjective well-being.

Disability, Gender and Advertising: Taking a Feminist Disability Studies Approach Feminist disability studies knowledge and theory is founded on the understanding that the disabled and female body is marginalized within society.10 Specifically, oppression is experienced by disabled women as a direct result of their disability and gender identity.11 Strong correlations between the goals of feminist and disability studies are identified by Mary Boulton, namely a motivation to critically understand both disability and gender as social constructs and the aim to challenge specific inequalities that arise directly from disability and gender identity.12 Feminist theory has powerfully addressed the issue of “commodification” of the female body throughout the media; however, media portrayals of disabled women have been insufficiently addressed thus far. Understanding of the role that discourse plays in shaping reality and identity is a central feature of feminist disability studies; “gender” and “disability” identities are not understood as fixed, rather, they seen as borne out of cultural contexts. Disability studies scholar Tom Shakespeare pinpoints the culture of “othering” disabled people and women as a core foundation for societal stereotypes and oppressive attitudes.13 Indeed, medical and sexist discourses that suggest disabled women are naturally “inferior” to their non-disabled, male counterparts dominate disability and gender narratives in the media.14 51

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Rosemarie Garland-Thomson, a key figure in the field of feminist disability studies, adds to the debate by suggesting that feminist disability studies encompasses a strong commitment to cultural analysis: By probing the cultural meanings attributed to bodies that societies deem disabled, feminist disability studies does vast critical cultural work … it understands disability as a system of exclusions that stigmatizes human differences … it reveals discriminatory attitudes and practices directed at … [disabled] bodies … it frames disability as an effect of power relations.15 Bolt uses the term “normate reductionism” to articulate the process by which disabled people are reduced to a single “trait,” i.e. their impairment, through ableist assumptions and attitudes. For Bolt, a cultural approach to disability studies outlines the reduction of a complex person to their impairment or diagnostic label via a myriad of assumptions, myths, stereotypes and disability tropes. Leading on from this, Bolt suggests that the process of normate reductionism is influenced by the “normate’s” superior cultural position; non-disabled people may feel that they already know the stories and experiences of disabled people.16 It seems, then, that feminist disability studies progressively develop the work of cultural disability studies theorists. Cultural disability studies scholars Sharon Snyder and David Mitchell17 use the term “cultural locations of disability” to describe the oppressive spaces designated to disabled people in society. For Mitchell and Snyder,18 the impaired body is socially and culturally constructed as “deficient” and inherently anomalous. Therefore, the spaces dominantly occupied by disabled people in sociocultural contexts are marginalized. Through analysing UK and US advertisements containing representations of disabled women from a feminist disability studies perspective, I aim to argue that advertising is a key way through which the media “others” and creates stigmatized spaces for disabled women.

Advertisements Featuring Representations of Mobility Impairment Nordstrom, July 2014: Print Advertisement The July 2014 fashion catalogue issue of US fashion retailer Nordstrom featured fashion blogger Jillian Mercado. In her role as editorial director of “WeTheUrban” (a web-based article series on fashion, culture and design) and as a fashion blogger, Mercado is familiar with fashion circles and popular trends. She is in her mid-twenties and is represented by a modelling agency, having previously appeared in a fashion campaign for Diesel. Since she was 12 years old, Mercado has used a wheelchair. In the advertisement I will discuss, Mercado is shown sitting in her wheelchair. For featuring Jillian Mercado, a disabled model, in their advertising, Nordstrom received a substantial amount of positive press coverage, throughout both the United States and United Kingdom. In the United Kingdom, tabloid newspaper the Daily Mail included statements that identified the fashion company as a historical champion of disability inclusion, in both fashion campaigns and employment. Interestingly, the article also used a statement drawing attention to the “billion pound” potential of targeting disabled people in business marketing. While in US media outlets, Nordstrom was praised for being “aware of diversity” and leading the way for forward-thinking fashion companies. Internet forums also housed multiple threads about the advertisement, with one forum user declaring that Nordstrom should be celebrated for its “morals.” It should also be noted that Mercado is not the first visibly disabled model featured in Nordstrom’s advertising campaigns and catalogues; disabled models have been used by the company since the early 1990s. 52

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Mercado is positioned at the right side of the ad’s frame; it appears as if she is emerging from the right side as part of her wheelchair is outside of the frame. She is against an empty background and her shadow can be seen on the wall behind. Mercado is wearing a short, black leather jacket, a black skirt made out of a thin and patterned material and black chunky boots. Noticeably, Mercado has short, choppily cut purple hair. The wheelchair she is using is black, with grey wheels and is electronic. Her body faces the left side of the frame and her head is turned to directly face the observer. A medium shot is used in the advertisement—a technique commonly used for its ability to create a “safe” and non-intrusive distance from the model and reader.19 By using a medium shot, the audience is kept at a reasonable distance from Mercado, thus inhibiting the traditional close, voyeuristic images that are usually attached to disabled people in advertisements. Representations of disabled people in advertising have traditionally been restricted to charity campaigns, which favour close, personal shots, often showing signs of “sadness” on the disabled person’s face.20 Therefore, by presenting a disabled woman as composed and at a neutral distance from the reader, the traditional “pitiable” and “passive” representations of disability in charity advertising is rejected. When discussing this advertisement, in particular how Mercado is represented and what she may be doing in this scene, all of the disabled women I interviewed responded positively and brought attention to the natural confidence Mercado appears to hold: Mary-Jane: Okay, it’s a young woman in her perhaps early twenties wearing high-fashion clothes of a particular fashion. I don’t know what the fashion is but, yeah, I like it. And she’s sitting in what looks like quite a heavy-duty wheelchair. She is looking very happy and very natural … She looks much more relaxed and human than that woman there [pointing to Kenneth Cole’s advertisement featuring Amy Mullins]. Louise: She’s happy, she looks comfortable doing what she’s doing and I don’t think anyone would look at that image and have anything negative to say about it. I think you could say it’s showing that they’re trying to be positive about impairment. The advertisement seems to encompass a “slice-of-life” approach. Mercado is fashionably dressed and her outfit appears suited for a range of scenarios, for instance, going to a party, a trip to the cinema, going for a date or a shopping trip. The women with mobility impairments that I interviewed unanimously agreed that the relaxed and everyday aspect of the advertisement and Mercado’s appearance was something they could relate to: Helen:

She might be going to a party because she looks quite dressed up. Her hair is done, she has her makeup on … so the fact that she’s portrayed as a party-going, electronic wheelchair user is quite a big step forward … She looks a bit like a punk, rock star fan. So like that’s quite nice because leather jackets and purple-bluish dyed hair is usually associated with a subversive, rebellious subculture and wheelchair users are not usually perceived as rebellious. So it’s nice that that’s part of her identity and she might just be going to a rock concert, just like anyone else would … She’s not this calm, passive, young, innocent wheelchair user—she looks like a rock star [laughs]. That’s quite nice! Penelope: She looks like she knows she looks good and she’s confident. She’s trendy, but she’s not over-doing it. When I wear certain clothes, particularly my leather jacket, for some reason, I feel like that.

From a feminist disability studies perspective, a striking aspect of this advertisement is Mercado’s strong and confident way of staring back at the camera lens. Interpreting this action alongside Garland-Thomson’s “staring” theory21 suggests that this device effectively places Mercado as 53

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holding power and agency. In Heiss’ feminist disability studies analysis of Dove’s beauty campaign,22 she engages with “staring” theory to suggest that Dove encourages the reader to objectify the disabled women by staring at their near naked bodies. I would suggest that Mercado’s direct stare at the camera lens is a key, progressive feature of this advertisement. By doing this, the advertisement does more than simply integrate a disabled woman into their brand image. Instead, Mercado is portrayed as an “equal player”—she is aware of the audience stares and actively participates in the visual communication.

Channel 4, “Born Risky,” December 2014: Television Advertisement In December 2014, Channel 4, a UK television channel, ran a “Born Risky” brand campaign featuring an extended advertisement intended to promote disabled pop artist, Viktoria Modesta’s song, “Prototype.” Channel 4 was established as an Act of Parliament in 1982 and is obliged to fulfil various public obligations, including appealing to “the tastes and interests of a culturally diverse society.” Channel 4 also received a high volume of media coverage for its coverage of the 2012 Paralympics. However, many disabled activists and supporters of the disability studies community have criticized the way that Channel 4 represented athletes with impairments as “supercrips,” including a promotional advert named “Meet the Superhumans.” Myself and some of the disabled women I interviewed identified similar aspects of the “supercrip” stereotype in the “Born Risky” advertisement. Colin Barnes, a highly regarded disability studies scholar, uses the term “supercrip” to describe a dominant stereotype the media attaches to disabled people: [T]he disabled person is assigned super human almost magical abilities. Blind people are portrayed as visionaries with a sixth sense or extremely sensitive hearing. Alternatively, disabled individuals, especially children, are praised excessively for relatively ordinary achievements … by emphasising the extra-ordinary achievements of disabled individuals … the media implies that the experiences of “ordinary” people—disabled or otherwise—are unimportant and irrelevant.23 The advertisement begins with white text on a black screen, reading “forget what you know about disability.” Following this, Modesta, who uses a prosthetic limb, appears on screen, walking in a white room and wearing one black stiletto and a prosthetic limb that is black, shiny and pointed. In the first frame, only Modesta’s legs are shown and the sharp noise of the pointed prosthetic hitting the floor is heightened. Text then follows, reading “Channel 4 Presents a New Kind of Pop Artist.” One of the disabled women I interviewed expressed concern regarding the link between disability and risk: Penelope: [T]he idea of risk, to me … is really problematic. I don’t think it’s very empowering. Although … I get it … in terms of an individual, in a very individualistic kind of way. Some people are born to take risks [caption used in advertisement], kind of like, you’re embodying the risk. So I understand that—that could be empowering for individuals, but I don’t see that idea as an empowering idea. The representation of disabled people as “risky” may be interpreted as doing little to challenge the historical and oppressive “freak” discourse that is attached to people with impairments, explains Garland-Thomson.24 Attaching risk to the disabled body seems to support the “freak” stereotype by suggesting that the life of a person with impairments is ulterior to the “norm” and inherently inspires curiosity.25 It could be argued that Modesta is consistently portrayed as “risky” and rebellious within the advertisement. The clothes and accessories she wears, for example, a black mask that covers most of her face, a shiny, black, spiked prosthetic limb and stiff, pointed 54

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shoulder pads contribute to a subversive, almost aggressive, attitude. The disabled women I interviewed held varying reactions towards this: Mary-Jane: But this has been directed in a way, I think, to show how powerful disabled women can be … doing things that, perhaps, they thought they couldn’t do and probably society thought or didn’t expect them to do. While another participant expressed concern with the representative link between disability, gender and “rebellion”: Helen: I think she plays very much on being perceived as dominant and threatening, maybe because “Oh, society perceives my missing limb, my ‘defect’ as threatening so I will show them what really to fear, namely my power and my dominance and the fact that I don’t care” … And surely it’s associated with a certain aesthetic and it almost reminds me of, like, a BDSM, eroticization of the dominant. To each their own, if that’s her thing then fine— it’s wonderful to see her embrace that, but I don’t think it serves to create a dialogue and it doesn’t serve to empower disabled women who might not feel comfortable in that dominant role or who might not even be able to create that image of dominance because they require assistance or because they require different access than she does. In the beginning scenes of the ad, Modesta is depicted as sitting on a throne with people in red gowns bowing down to her. This is followed by scenes depicting a young girl watching a cartoon video of Modesta and then attempting to pull the leg off her doll, her mother enters the room and angrily turns off the television. Modesta’s legs are often solely shown and fill the ad’s frame. She wears an array of elaborate prosthetics, including one that lights up, one that is diamante encrusted and another that is surrounded by moths. It is interesting that this advertisement is not part of a fashion or beauty campaign, yet still promotes a consumerist and materialist culture through the use of glamorous and aesthetically rich accessories. An interpretation of the overuse of decadent and expensive clothes and props could draw links between the commodification of disability and gender in an ever-expanding consumerist culture. Penelope articulates this process further: “Advertising itself conforms things … commodifying the non-conformity … that’s what advertising does because it’s trying to sell something.” Modesta’s song “Prototype” that is the soundtrack to the advertisement features lines, such as, “Provocatively I deny your effort, I’m dedicated/Coz I’m not restricted by your method/I ain’t another project, just messing with your logic/I’m progressive, not aggressive,” and the chorus line: “I’m the pro … I’m the pro … I’m the prototype.” Alongside singing, Modesta is shown dancing and scenes of a sexual nature, for instance, at one point she appears naked on a bed kissing a man and woman who are also naked. This is the only scene where Modesta is shown without wearing a prosthesis. In following scenes, Modesta is presented as a kind of cultural icon that is feared by the state; she is interrogated by males who appear to represent soldiers or officials. The final scene depicts Modesta dancing against a red background in a manner that seems deliberately provocative, to the point of being intimidating as she is covering her face with a mask and repeatedly stabs her prosthesis against the floor. In the excerpt below, Joanna explains how the risky and glamorized portrayal makes her feel alienated from the advertisement’s narrative: Joanna: For me this [ad] had a negative impact on my subjectivity … The overriding message for me … was this is so desirable and I’m so different from what is desirable that for me, it was quite a negative message. And I can never be this person, in any way. So, this is what is “good disability” and I am what is “bad disability.” 55

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Kenneth Cole Fashion, Spring 2008: Print Advertisement The third advertisement is produced by Kenneth Cole (2008), a fashion designer and retailer based in the United States. Bearing the slogan “We All Walk in Different Shoes,” in large, black, handwritten-style writing, the advertisement’s purpose is seemingly to promote Cole’s latest fashion range, while promoting the idea that the company has a 25-year history of “non-uniform thinking” (this text is included in a smaller size, at the bottom right of the page). Aimee Mullins is featured in the advertisement, an image of her wearing professional, trendystyle clothes dominates the center of the frame. Mullins is wearing a black blazer and kneelength skirt with a bright red top. She is using prosthetic limbs, designed to resemble the same shade as her skin and wears her hair neatly tied back, with a flash of red lipstick. Mullins also appears to be wearing black, high-heeled shoes. A small caption towards the right hand side of Mullins reads, “Aimee Mullins, Paralympic Athlete, Actor, and President of the Women’s Sports Foundation.” The image of Mullins is shot from a slightly low angle, giving the impression that she is “looking down” at the reader. Her professional appearance suggests that the format of this advertisement is “slice of life”—Mullins could be ready to go to work, a meeting or a smart occasion. Advertisers commonly use a slice-of-life format to enhance the brand’s approachability factor, in other words, to create a friendly and natural image.26 Additionally, the makers of advertisements are consciously aware of the pressure to create an instant impact effect. Typically, readers will glance at print advertisements for one and a half seconds.27 In fashion advertisements, such as this one, it is important that the reader—a potential consumer—instantly feels a connection and is able to identify with the person and style shown in the advertisement.28 Advertisers tend to use well-known or famous figures in order to powerfully add to the “personality” of a brand, by using a face that readers feel they can “trust” or relate to.29 Mullins is a wellknown US Paralympic athlete, model and actor who has appeared in various “big-brand” campaigns, for example Alexander McQueen (a high fashion brand) and L’Oréal (a beauty and hair brand). In her writing on disability discourse and the media, Jan Grue comments that Aimee Mullins was frequently represented as a kind of “superhuman” in promotional material for the 2012 London Paralympics. Grue suggests that, especially during this period, Mullins developed an icon status and was used by the media as a symbol of the notion that disabled people have “no excuse” for not achieving transcendental feats, completely on their own.30 When discussing this advert, the disabled women that I interviewed found it difficult to identify with Mullins and the depiction of mobility impairment: Mary-Jane: I know loads of disabled women and I don’t know many disabled women at all who look like that. Helen: You have to look at it very closely to even realize she is wearing prosthetic legs… Yes, we all walk in different shoes, it’s true, but barriers aren’t put into everyone’s way. And it, again, like she’s walking in shoes, she isn’t using a wheelchair. Yes, she might look different but people might not sometimes notice that she is wearing prosthetics. I would say often she has the ability to appear as normal, or as without impairment. Louise: You know, she [Aimee Mullins] has probably got a very good self-well-being, happy and she’s out there “doing it” but that’s not necessarily depicting what a person in everyday life who doesn’t do that would be feeling, necessarily. Additionally, the use of “we” in the main tagline of the advertisement, “We All Walk in Different Shoes,” creates an assumed relationship between the content and the reader.

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Advertisers are keen to capitalize on the feeling of intimacy and familiarity that potential consumers can attach to brands, in order to sustain trust and maximize the probability that the person will remember the brand. However, by assuming that “we” all “walk,” the advertisers are seemingly supporting ableist discourses that fail to register the diverse ways that disabled women may choose to move around. Bolt uses the phrase “normative positivisms” to describe the act of reinforcing traditional standards of behaving, acting or appearing that are exclusionary to disabled people.31 I propose that in order to create progressive representations of disabled women, advertisers must focus on subverting ableist stereotypes and embracing the naturalness of bodily diversity, rather than reinforcing traditional and oppressive discourses.

Conclusion In this chapter, I have offered my own interpretations alongside the personal and insightful responses of disabled women to the representation of disability and gender in three advertisements. By fusing my own thoughts with the narratives and embodied experiences of disabled women, I have aimed to highlight cultural representation of disability and gender as a personal, social and political issue. The representation of disabled women in advertising has been outlined as a complex process that does not gather simplistic “yes”/“no” reactions or “good”/“bad” evaluations. A common theme running throughout the responses of disabled women to advertisements is critique of—to use Heiss’32 term—“naïve integration” of bodily diversity. Alongside my own analyses of ads, these reactions indicate that the bodies of disabled women are not yet included in advertising representations in a progressive way. I hope that this chapter has made a good case for the inclusion of the strength of subjective experiences, thoughts and views of disabled women in shaping and navigating cultural representations of disability and gender. If advertising is to truly embrace the representation of disability and gender, it is my proposition that any portrayals should communicate more clearly the everyday and lived experiences of disabled women. I recommend future research in the field of disability and gender representation in advertising focus on the extent to which advertising narratives are comparative to the embodied realities of the individuals they purport to represent. Furthermore, it would be useful for the makers of ads to include a spectrum of input from disabled women, within the process of creating advertisements, in order to promote authentic inclusion of human diversity, as opposed to the commodification of diversity.

Notes 1 Elizabeth Hirschman and Craig Thompson, “Why Media Matter: Toward a Richer Understanding of Consumers’ Relationships with Advertising and Mass Media,” Journal of Advertising 26, no. 1 (1997): 43–60. 2 Sean Brierly, The Advertising Handbook (London: Routledge, 1995). 3 David Bolt, “An Advertising Aesthetic: Real Beauty and Visual Impairment,” British Journal of Visual Impairment 32, no. 1 (2014): 25–32. 4 Sarah Heiss, “Locating the Bodies of Women and Disability in Definitions of Beauty: An Analysis of Dove’s Campaign for Real Beauty,” Disability Studies Quarterly 31, no. 1 (2011), doi: http://dsq-sds.org/ article/view/1367/1497. 5 Helen Meekosha, “Body Battles: Bodies, Gender and Disability,” in The Disability Reader ed. Tom Shakespeare (London: Continuum, 1998), 163–181. 6 Harlan Hahn, “Advertising the Acceptably Employable Image,” in The Disability Studies Reader ed. Lennard Davis (London: Routledge, 1997), 172–187. 7 Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). 8 Beth Haller and Sue Ralph, “Profitability, Diversity, and Disability Images in Advertising in the United States and Great Britain,” Disability Studies Quarterly 21, no. 2 (2001), doi: doi.org/10.18061/dsq.v21i2.276;

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10 11 12 13 14 15 16 17 18 19 20 21 22 23 24

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Beth Haller and Sue Ralph, “Are Disability Images in Advertising Becoming Bold and Daring? An Analysis of Prominent Themes in US and UK Campaigns,” Disability Studies Quarterly 26, no. 3 (2006), doi: https://doi.org/10.18061/dsq.v26i3.716. Bolt, “An Advertising Aesthetic”; Haller, Representing Disability; Haller and Ralph, “Are Disability Images in Advertising”; Haller and Ralph, “Profitability, Diversity, and Disability Images”; Heiss, “Locating the Bodies of Women and Disability.” Kim Hall, “Reimagining Disability and Gender through Feminist Studies: An Introduction,” in Feminist Disability Studies, ed. Kim Hall (Bloomington: Indiana University Press, 2011), 1–11. Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” in Feminist Disability Studies (Bloomington: Indiana University Press, 2011), 13–48. Mary Boulton, “Feminism,” in Encyclopedia of Disability, ed. Gary L. Albrecht (Thousand Oaks, CA: Sage, 2006), 723–725. Tom Shakespeare, “Cultural Representation of Disabled People: Dustbins for Disavowal?” Disability & Society 9, no. 3 (1994): 283–299. Helen Meekosha and Leanne Dowse, “Distorting Images, Invisible Images: Gender, Disability, and the Media,” Media International Australia 84, no. 1 (1997): 91–101. Rosemarie Garland-Thomson, “Feminist Disability Studies,” Signs: Journal of Women in Culture & Society, (2005): 1557–1587. David Bolt, The Metanarrative of Blindness (Michigan: University of Michigan Press, 2014). David Mitchell and Sharon Snyder, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006). Sharon Snyder and David Mitchell, Narrative Prosthesis (Chicago: University of Chicago Press. 2000). Nick Lacey, Image and Representation: Key Concepts in Media Studies (London: Macmillan, 1998). Haller and Ralph, “Profitability, Diversity, and Disability Images.” Rosemarie Garland-Thomson, Staring: How We Look (Oxford: Oxford University Press, 2009). Heiss, “Locating the Bodies of Women and Disability.” Colin Barnes, Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People (Halifax, UK: Ryburn, 1992). Rosemarie Garland-Thomson, “Introduction: From Wonder to Error—A Genealogy of Freak Discourse in Modernity,” in Freakery: Cultural Spectacles of the Extraordinary Body ed. Rosemarie Garland-Thomson (New York: New York University Press, 1996), 1–19. Robert Bogdan, “The Social Construction of Freaks,” in Freakery: Cultural Spectacles of the Extraordinary Body ed. Rosemarie Garland-Thomson (New York: New York University Press, 1996), 23–37. Lacey, Image and Representation. Sean Brierly, The Advertising Handbook (London: Routledge, 1995). Manuel Kauffmann, Semiotic Analysis of Fashion Advertisements (Marburg, Germany: University of Marburg, 2006). Jagdish Agrawal and Wagner A. Kamakura, “The Economic Worth of Celebrity Endorsers: An Event Study Analysis,” Journal of Marketing 59, no. 3 (1995): 56–62. Jan Grue, Disability and Discourse Analysis (Farnham, UK: Ashgate, 2015). David Bolt, “Not Forgetting Happiness: The Tripartite Model of Disability and Its Application in Literary Criticism,” Disability & Society 30, no. 7 (2015): 1103–1117. Heiss, “Locating the Bodies of Women and Disability.”

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5 STILL PLAYING IT SAFE A Comparative Analysis of Disability Narratives in The Sessions, Breathing Lessons and “On Seeing a Sex Surrogate” Jonathan Bartholomy Introduction Mark O’Brien contracted polio as a 6-year-old and went on to become a poet, journalist and disability advocate. The subject of two films, he is an important personality in the area of disability media. His life has been presented in many different ways through different mediums, with each text reflecting a different discourse about disability. O’Brien may be best known in some circles as a disabled writer who hired a sex surrogate and who served as the main subject in Jessica Yu’s Academy Award-winning documentary film Breathing Lessons: The Life and Work of Mark O’Brien.1 O’Brien’s own essay “On Seeing A Sex Surrogate”2 offers his perspective on wanting to be loved and his experience with his sex surrogate Cheryl Cohen-Greene. Most recently, this relationship was explored in Ben Lewin’s The Sessions.3 This film offers a type of “first glimpse” into O’Brien’s life for many people, as it has garnered more mainstream attention towards O’Brien than anything before its release. This chapter is a comparative piece about the narrative film, documentary film and essay, examining the narratives about disability that are utilized in each. I argue that while these works give attention to disability experiences not often acknowledged, they still sustain hegemonic narratives about disability. The chapter examines instances in each work and how they “fall in line,” emphasizing common ideas connected to disability narratives. In this way, the chapter attempts to “crip” these pieces. Cripping refers to the act of revealing the overarching norms within a society that reinforce the dominance of the non-disabled perspective and its exclusionary practices. Furthermore, cripping “[exposes] the arbitrary delineation between normal and defective and the negative social ramifications of attempts to homogenize humanity.”4

The Sessions Lewin’s film first introduces Mark O’Brien through archival footage of a television news report as he graduates from college, indicating his polio and showing him traveling by gurney. A few different moments in the film explain the importance of the iron lung he uses, his dependence on it and the limited time he can be without it. The story begins in Berkeley, California in 1988. O’Brien (John Hawkes) is first being cared for by one of his personal care attendants Joan (Rusty Schwimmer), whom O’Brien despises because of her attitude toward him. After receiving the blessing from his local priest Father Brendan (William H. Macy) to fire Joan, O’Brien hires

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Amanda (Annika Marks). O’Brien is attracted to her and eventually expresses his affection for her and his desire to marry her, but his direct approach makes her uncomfortable and she quits. After he tells Father Brendan about the experience, Father Brendan asks him if he has ever seen a therapist. While interviewing Vera (Moon Bloodhound) for a potential personal care attendant position, he receives a call from Pacific News Service and agrees to do a series of articles about disabled people and their sex lives. After the interviews, he decides to go to a sex therapist to discuss his fantasy of having sexual intercourse with a woman and she refers him to sex surrogate Cheryl Cohen-Greene (Helen Hunt). After asking for and receiving a blessing from Father Brendan, O’Brien agrees to meet Cohen-Greene after she contacts him. For two of the therapy sessions, O’Brien and Cohen-Greene use the accessible home of Carmen (Jennifer Kumiyama), one of the disabled people whom O’Brien interviews for an article. During those first two sessions, Cohen-Greene learns about O’Brien’s past, dictating notes into a tape recorder and revealing more of his insecurities to the audience that relate to his parents, his religious upbringing and the death of his younger sister. With the first two sessions, O’Brien is unable to achieve full penetration, being stressed and prematurely ejaculating. With the third session, Carmen forgets about the appointment, so it has to take place in a motel room. At this session, he is finally able to achieve full penetration after talking with Cohen-Greene and seemingly forgiving himself for having polio. Before the session ends, O’Brien learns about Cohen-Greene’s interest towards sex, her husband and her upcoming conversion to Judaism. They also agree that for the next session, they will work on him helping her achieve an orgasm. Despite her concern that O’Brien sees her as an all-encompassing female, Cohen-Greene agrees to meet him at a restaurant for a cup of coffee. O’Brien writes a poem that expresses his affection for her and mails it to her, but her husband retrieves the mail, reads the letter and throws it away. While this causes an argument between Cohen-Greene and her husband, they eventually make peace and she retrieves the letter and reads it later that night. After this, O’Brien recalls to Father Brendan (through flashbacks) his unexpected reacquaintance with Amanda and his disappointment that she is not “in love” with him. He also remembers the fourth (and final) session. While it was successful in terms of his objective, they both decide that it should be the last, knowing that their relationship will not continue despite their feelings for each other. Before Cohen-Greene drives away in her car, Vera hands her the envelope with the poem O’Brien enclosed, soliciting an emotional response. O’Brien confides with Father Brendan about whether or not his interaction with Cohen-Greene achieved anything. Sometime later, the power goes out in O’Brien’s apartment while he is in the iron lung, causing its pump to stop. While he is able to contact one of his personal care attendants, the next scene shows him being rushed to a hospital on a gurney while being given oxygen. On the day that he is to leave the hospital, he meets Susan Fernbach (Robin Weigert), socializing with her and informing her that he is not a virgin before being transported home. He later tells Father Brendan about their developing relationship. The final sequences in the film involve the funeral service for O’Brien, with Father Brendan eulogizing him and Fernbach reading the poem that he wrote Cohen-Greene. With The Sessions, a complex view of disability seems to appear, offering alternatives to some commonplace notions about disability from past films. In terms of Martin F. Norden’s historicizing of the ways that physically disabled characters are portrayed in film, The Sessions attempts to place itself somewhere in the third historical era (1970s to the present), where disability is handled “in more of an incidental way, in which rehabilitation issues often take a back seat to other concerns such as fighting for social justice, sexually expressing oneself, and simply getting on with day to day life.”5 The film focuses on sex and disability in a frank way that deviates from mainstream films. With this film being based on O’Brien’s piece, “On Seeing a Sex Surrogate,” viewers are spared from uses of sex and disability in film that are associated with mental illness 60

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and violence (as in the case of Fatal Attraction6) or the use of a prostitute (as in the case of Forrest Gump7). In place of these often perpetuated ideas, the viewer of this film is treated to an adaptation of O’Brien’s perspective, using his own words. As the film progresses through his relationship with Cohen-Greene, the audience can see O’Brien’s fears, successes and failures in the experience, going along with him as he tries to have sexual intercourse. Connected to this point, the film also presents O’Brien as a person with a disability who eventually becomes comfortable with his own sexuality and finds an intimate female partner in Fernbach, distancing him from other characters with disabilities across a range of films who appear to be asexual (as in the case of The Elephant Man8 and Gattaca9). The direct manner in how the film deals with these issues of sex and disability alert viewers to the idea that people with disabilities can be sexually active. At first glance, the factor of disability in The Sessions may certainly come off as a secondary issue to sex, with O’Brien’s disability affecting his interaction with the environment and others, but not being an overtly primary issue of the film. The largest obstacle that the film presents O’Brien facing in achieving his goal of sexual intercourse is himself. Interestingly, it seems that the film has O’Brien half seriously connecting this failure to what he perceives to be a curse brought on by God. After accidentally ejaculating on Cohen-Greene during the second appointment, the film cuts to a scene in a church where O’Brien is telling Father Brendan about his experience. O’Brien says, “I felt cursed. That the whole enterprise was cursed. It seemed like a totally just punishment. God wasn’t actually denying my sexuality. He was just pointing out to me how useless it was.”10 Even though this may relate to more ancient narratives about how disability is associated with a “punishment for evil” or religious transgression (at least for O’Brien, who shows a great deal of apprehension towards sex, given his religious background), the focus remains on O’Brien himself.11 A few minutes later, there is a cut to a scene where Cohen-Greene is recording verbal notes about O’Brien into a tape recorder while sitting at a table in her yard, offering her own analysis of him and giving the viewer more details about how he views himself, saying, I believe the root to his anxiety is his parents and his religion. He believes he doesn’t deserve sex. He believes he’s responsible for his little sister’s death at the age of seven because his mother was too busy looking after him.12 Such an understanding of O’Brien seems to place him at odds with himself, illustrating his guilt surrounding his disability as the main cause for his inability to have sexual intercourse with her. During a later scene when O’Brien and Cohen-Greene have to move their sessions to a hotel room, O’Brien still cannot perform successfully as they lay in bed. After he reminisces about his sister and how his parents chose not to put him in a nursing home and took care of him, she asks him to close his eyes and picture himself as a 6-year-old boy. She eventually asks him if he can picture himself as an adult watching the same 6-year-old boy. She asks him, “And are you mad at him? Do you blame him for getting polio? Was it his fault?”13 The final shot of this pivotal scene consists of a close-up of O’Brien’s face as he looks back to her and then off into space as she leaves the bed to go to the bathroom. At this point, O’Brien has been confronted about the guilt he has pertaining to his disability. Considering this development, one can make a case that this played a part in his acceptance of himself as a person with a disability, allowing him to achieve full penetration with Cohen-Greene a few minutes later in the film. Perhaps even more importantly, he is able to shift his focus beyond himself, using a subsequent session to have Cohen-Greene experience an orgasm while having intercourse with him and eventually finding a stable partner in Fernbach. The narrative presented by this film connects to what Paul Longmore describes as “stories of achievement and success, of heroic overcoming,” where “disability is primarily a problem of the 61

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emotional coping, of personal acceptance.”14 As a Hollywood drama/biography, the film is already constructed toward this kind of story. The film focuses on a character trying to achieve particular goals despite setbacks, adhering to the expectations of mainstream audiences. Factors such as “emotional choices, courage, and character of the individual” are meant to determine how someone living with a disability succeeds or fails.15 These stories perpetuate the idea that “with the proper attitude one can cope with and conquer any situation” and that “[nothing] can defeat us; only we can defeat ourselves.”16 The beginning of the film actually illustrates how these types of stories are told, with archival footage of a TV news reporter introducing O’Brien to the viewer and saying, He had polio when he was six years old. The disease left his body crippled, but his mind remained sharp and alert. And since he wanted to be a writer, Mark O’Brien entered Cal to major in English and learn his trade.17 At the very end of the report, the reporter concludes “Mark O’Brien teaches us that courage and perseverance overcome obstacles.”18 O’Brien is already being situated as an individual who succeeded in the past by facing his disability with courage by not limiting himself and continuing to go to school. His experience with disability is framed negatively, having “crippling” effects on him. Still, the “courage and perseverance” he shows are meant to reflect his ability to overcome his disability. The rest of the film shows a similar type of story, echoing Longmore’s points. The viewer sees how O’Brien must overcome his guilt about having polio in order to have sexual intercourse, connecting to the idea that his disability relates to his emotional coping skills. The impression is given that O’Brien must decide how he feels about himself and how his disability affects his life. While O’Brien may not overcome his physical impairment, he is able to overcome what Longmore calls “the emotional consequences of such impairments.”19 By taking this step, his story becomes one that is associated with success through perseverance, once again moving beyond his disability to move forward with his life and eventually find happiness through his relationship with Fernbach. Telling this story with this type of lens narrows a viewer’s understanding of O’Brien, simplifying him and the story within the confines of a hegemonic disability narrative.

Breathing Lessons: The Life and Work of Mark O’Brien Yu’s film covers O’Brien’s life from his childhood to the mid-1990s. O’Brien serves as narrator through his own words from the interview for the documentary. He first tells the viewer of the difficulties he has as a result of polio and explains how the iron lung works. He recounts his experience getting polio as a young child and his parents’ decision to take him home instead of putting him in a nursing home. After remembering the realization of his difference from others as a young boy and reminiscing about his late sister, the film jumps ahead to when his family moves to Sacramento and he lived in Fairmont Hospital for two years before attending the University of California, Berkeley. He recalls the responsibilities at Berkeley transforming his life, the experience of graduation and the disappointment of having to leave graduate school due to illness. At this point, he talks about focusing more energy on writing articles and poetry. O’Brien also talks about his living arrangements and the importance of independent living as opposed to living in a nursing home. Touching on how people tend to think of disability in a negative way, he advocates for people to think of disability as a social problem, understanding that simple hard work does not solve the problem. Bringing up his desire to write about physician-assisted suicide, he stresses the importance of the issue for disabled people. After talking about his relationships with other people through letters, he remembers his experience with a sex surrogate and the 62

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subsequent depression after more serious relationships did not materialize. After this, the sudden death of his mother comes into focus and he talks about the efforts of his parents to care for him. The last few scenes in the film have him covering his inability to understand the workings of the universe, his spirituality and his relationship with actress Elizabeth DuVall. In order to provide context for the viewer beyond O’Brien’s words, Yu primarily uses family and period photographs, past video footage and her own footage to correspond with what O’Brien is referring to at a particular moment. During the section of the film where he speaks about his experience as a student at the University of California, Berkeley, the film employs photographs of him in the classroom and around campus, along with video of him navigating through the area and rolling across the stage in his gurney to receive his diploma. When he talks about living in his own apartment, there are shots of him in this setting, engaging with personal care attendants. Yu uses O’Brien’s own written work to transition to another topic or set of related topics, having intertitles indicate a particular piece of work as O’Brien starts to recite it. For instance, after O’Brien finishes talking about the positives of independent living, there is an intertitle indicating that he is reading from his poem “Stir.” The poem deals with his desire to leave his apartment and explore the environment outside. Many of the subsequent shots show him traveling with a personal care attendant in Berkeley. There are a few moments in this film that appear to reflect what Carrie Sandahl and David Mitchell refer to as the activist subgenre of disability documentary films, “[exploring] the social and political dimensions of disabled people’s lives and [advocating], explicitly or implicitly, for systemic liberatory change.”20 For instance, O’Brien talks about the importance of independent living. He tells the viewer, When [disabled people] say we want to be independent, that doesn’t mean we just want to do everything for ourselves. Independence has to do with the locus of power being within us. If we get the money to hire people, then we can hire who we want to wash us, lift us, spend our days with.21 O’Brien also compares living in his own apartment to the cost of staying at a nursing home, saying, When I was in the Fairmont [Hospital], it cost about USD 5,000 a month. Here in Berkeley, it comes to USD 1,800 a month. Taxpayers save a lot of money through independent living. We just need the power to control our own lives the way anybody else does.22 This connects to the social and economic issues that disabled people face in trying to live their lives and make their own decisions. Another example of this approach comes into focus when O’Brien talks about hiring Cohen-Greene as a sex surrogate. He recalls the beginning of the experience, saying, I hired a sex surrogate in ’87, ’86. I forget when. I just felt very crazy. I was angry at all women for not falling in love with me ’cause I’d fall in love with several attendants and they, they all said it was a business relationship.23 There is also a point in the documentary where he remembers his disappointment in how the sessions did not necessarily change his life as he had hoped, saying,

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They tell us to think of ourselves as sexual and beautiful but it doesn’t do any good unless someone else sees us as sexual and beautiful. You just can’t demand love. You have to be lovable. I’m still trying to figure out how to do that.24 Both of these moments regarding relationships and love reflect the notion that disabled people are not seen as sexual and beautiful, relating back to society’s attitudinal barriers and how they need to be addressed. Still, Yu’s film can primarily be classified within the inspirational disability documentary subgenre, focusing on “the trials and tribulations of life as a disabled person” and “the ability of the individual to overcome impairments” and “the tragic inability to do so.”25 As a documentary about one person, the film is structured to tell his story and what he accomplished over time. Considering the subject matter, filmgoers expect this approach. The film shows O’Brien’s success in navigating through school and responsibilities, earning his degree. It also notes how his declining health limited his own experiences. Discussing his health, he reflects on how it impacts his mind-set, saying, “Berkeley taught me I could do anything. I could transcend the limitations of my body. Then my body said, ‘Oh no, you don’t. You got kidney stones. You got post-polio, you’re gonna stay in bed.’”26 Aspects of O’Brien’s life are dealt with in a sentimental fashion. By “[evoking] easy emotions of sympathy, pity, tragedy, or triumph,” the film connects to the practice of “[portraying] disability as an individual phenomenon that is divorced from the wider struggles of disability civil rights agendas and often neglect the degree to which class status provides an enabling context for their accomplishments.”27 This connects to Lewin’s approach of how to portray O’Brien in his own film. In Yu’s film, viewer’s attention is focused squarely on O’Brien and his words. While politically charged topics come into momentary focus, the film moves on without diving beyond his perspective.

“On Seeing a Sex Surrogate” O’Brien’s piece mainly covers his decision to hire a sex surrogate, his time with Cheryl CohenGreene and his thoughts after the experience. In the beginning, O’Brien recounts his fears regarding his sexuality, worrying about the disapproval of his parents and of God. At the same time, he stresses his desire to be loved. He touches on the process of finding the right therapist to talk to about hiring a sex surrogate (and the efforts to find an accessible way to locations) and seeking advice from people about his decision. After setting up the first meeting with CohenGreene, O’Brien recalls finding an accessible location through a disabled acquaintance, fearing rejection and waiting nervously for her arrival. With the first meeting, he describes their interactions and his emotions, feeling triumphant about such an experience. With the second meeting, O’Brien finds himself climaxing early twice and panicking about intercourse before reading a Shakespearean poem to Cohen-Greene. He worries about his perceived inability to have intercourse with a woman. For the third meeting, he finds another accessible location through another disabled acquaintance and is transferred with the help of an assistant. After climaxing too early again, he is able to have an orgasm inside of her for a second and tells her that he wants to work on her having an orgasm the next time. After this, Cohen-Greene shows O’Brien his own body through the help of a large mirror, which helps him accept his own body. Even with this development, he continues to worry about having intercourse with a woman. Between this meeting and the next, he visits a former attendant named Tracy. While they remain friendly, he reveals to the reader how sad he is that she was not sexually attracted to him. For his next meeting with Cohen-Greene, they are both able to have orgasms. After discussing buying a futon, O’Brien decides that this would be their last meeting. Looking back on this entire experience, he recalls his optimism but feels that nothing has changed, reflecting on culture, society and his next move. 64

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There are parts of this piece that momentarily reflect what G. Thomas Couser calls a “rhetoric of emancipation” within the scope of disability life writing, which encompasses recognizing the “value and rights of people with disabilities” while also viewing disability as being negatively constructed by the larger culture.28 Couser refers to this approach as “counterhegemonic” as a disability narrative in comparison to other commonplace narratives that have been used over the years.29 In an interaction with Cohen-Greene during a session, O’Brien comes to the realization that “sex is a part of ordinary living, not an activity reserved for gods, goddesses, and rock stars.”30 Soon after, he is elated when CohenGreene affirmatively answers that she feels he “[deserves] to be loved sexually.”31 While this may not connect directly to fighting for the rights of disabled people, the segment reflects a moment where O’Brien realizes a sense of acceptance and self-worth, along with the understanding he can participate in an activity that he thought was denied to him. Another instance where one can argue that this piece touches on a rhetoric of emancipation is when O’Brien is able to interact with other disabled people in the community to find a place for the sessions. Although this comes off as something small, it shows the level of connection to the disability community and going beyond the individual. Even with the inclusion of this perspective, O’Brien’s essay is much more connected to rhetorical patterns of disability life writing that reinforce long-held ideas about disability. One that feels less present but very important is the “triumph over adversity,” where “a successful individual takes pride in, and invites the reader’s admiration for, a recounting of his or her overcoming of the obstacles posed by an impairment.”32 While O’Brien is telling a story about his own personal experience, including what he is able to accomplish is also important. Readers are able to focus on what happens to him, waiting for the piece to reach this particular point. This is evident after O’Brien’s first meeting with CohenGreene, as he asks his attendant Dixie about her first sexual experience. After she answers, O’Brien writes that he felt “admitted to something from which [he] had always felt excluded: the world of adults.”33 This “overcoming” aspect continues through his last meeting with Cohen-Greene, as O’Brien writes that he feels “exultant,” after they both achieve orgasms.34 There is also a sense of a continuing achievement of admittance into the world of adults, being comfortable with another person in such an intimate way. In The Sessions, the “overcomer” aspect arises through similar developments. Yu shows this approach with a wider lens, including segments on his education. O’Brien’s piece shows him achieving a level of self-exploration and accomplishment through the sessions. The more prominent pattern in this piece is what Couser labels “gothic rhetoric,” where “disability is characterized as a literally dreadful condition, to be shunned or avoided,” bringing a sense of “revulsion” or “pity” towards the individual.35 With O’Brien, the sense of revulsion towards his condition comes into focus a number of times, even with his triumphant moments. For instance, on the first day he is supposed to meet with Cohen-Greene, he wonders if “[she would take] one look at [him]—disabled, skinny, and deformed—and change her mind,”36 disgusted with the sight of him. It feels as though he internalizes this perspective. When he is disappointed that Tracy is not attracted to him, he writes, “Who could blame her? I was seldom attracted to disabled women. Many young, healthy, good-looking men had been drawn to Tracy, who was in a position to pick and choose.”37 Again, he sees his disability as a negative factor and prioritizes healthy bodies over his own. Both the use of triumphing over adversity and the gothic rhetoric place attention on the individual point of view. They overshadow any wider social or cultural perspective.

Conclusion Lewin’s The Sessions, Yu’s Breathing Lessons: The Life and Work of Mark O’Brien and O’Brien’s “On Seeing a Sex Surrogate” all have aspects that go against hegemonic disability narratives. Lewin approaches disability in a very frank manner. Both Yu and O’Brien include moments that touch on wider disability issues, suggesting a sense of community or political involvement. However, all three contain some level of an inspirational “overcomer” narrative that is given much more 65

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attention. Furthermore, O’Brien’s piece goes in a separate direction with the gothic rhetoric in disability life writing, still utilizing ideas from the past. By examining these texts, one can see how cultural notions about disability have persisted, with particular ideas pervading through different mediums and even suggesting a level of internalization for some disabled people.

Notes 1 Breathing Lessons: The Life and Work of Mark O’Brien, directed by Jessica Yu (1996; Brooklyn, NY: Fanlight Productions, 2009), DVD. 2 Mark O’Brien, “On Seeing a Sex Surrogate,” Sun Magazine, May 1990, http://thesunmagazine.org/issues/ 174/on_seeing_a_sex_surrogate. 3 The Sessions, directed by Ben Lewin (2012; Beverley Hills, CA: 20th Century Fox Home Entertainment, 2013), Blu-ray. 4 Carrie Sandahl, “Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance,” GLQ 9, no. 1–2 (2003): 37. 5 Martin F. Norden, The Cinema of Isolation: A History of Physical Disabilities in the Movies (New Brunswick, NJ: Rutgers University Press, 1994), 317. 6 Fatal Attraction, directed by Adrian Lyne (1987; Hollywood, CA: Paramount Home Video, 2002), DVD. 7 Forrest Gump, directed by Robert Zemeckis (1994; Hollywood, CA: Paramount Home Video, 2006), DVD. 8 The Elephant Man, directed by David Lynch (1980; Hollywood, CA: Paramount Home Video, 2001), DVD. 9 Gattaca, directed by Andrew Niccol (1997; Culver City, CA: Sony Pictures Home Entertainment, 2008), Blu-ray. 10 The Sessions, Lewin. 11 Norden, Cinema of Isolation, 7. Norden quotes examples of the Bible’s many passages linking disability and disease with religious transgression sourced from Nancy Weinberg and Carol Sebian, “The Bible and Disability,” Rehabilitation Counseling Bulletin 23, no. 4 (1980): 273. 12 The Sessions, Lewin. 13 The Sessions, Lewin. 14 Paul K. Longmore, “Screening Stereotypes: Images of Disabled People in Television and Motion Pictures,” in Why I Burned My Book and Other Essays on Disability (Philadelphia, PA: Temple University Press, 2003), 139. 15 Longmore, “Screening Stereotypes,” 139. 16 Longmore, “Screening Stereotypes,” 139. 17 The Sessions, Lewin. 18 The Sessions, Lewin. 19 Longmore, “Screening Stereotypes,” 139. 20 Carrie Sandahl and David Mitchell, “Documentary Film,” in The Encyclopedia of Disability, ed. Gary Albrecht (Thousand Oaks, CA: Sage, 2006), 516. 21 Breathing Lessons, Yu. 22 Breathing Lessons, Yu. 23 Breathing Lessons, Yu. 24 Breathing Lessons, Yu. 25 Sandahl and Mitchell, “Documentary Film,” 516. 26 Breathing Lessons, Yu. 27 Sandahl and Mitchell, “Documentary Film,” 516. 28 G. Thomas Couser, Signifying Bodies: Disability in Contemporary Life Writing (Ann Arbor: University of Michigan Press, 2009), 47. 29 Couser, Signifying Bodies, 42. 30 O’Brien, “On Seeing.” 31 O’Brien, “On Seeing.” 32 Couser, Signifying Bodies, 33. 33 O’Brien, “On Seeing.” 34 O’Brien, “On Seeing.” 35 Couser, Signifying Bodies, 34. 36 O’Brien, “On Seeing.” 37 O’Brien, “On Seeing.”

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6 MENTAL DISTRESS, ROMANCE AND GENDER IN CONTEMPORARY FILMS Greenberg and Silver Linings Playbook Alison Wilde

This chapter will analyze two recent films that have mental health concerns at the heart of their narratives. The first is Greenberg,1 directed by Noah Baumbach in 2010, and the second is Silver Linings Playbook,2 directed by David O. Russell in 2012. Both have very similar storylines, but I will argue that they generate very different discourses on normality, mental health and mental distress. Using an approach informed by disability studies, mad studies and film studies, I will show how mental distress in two ostensibly similar films is embedded within very different models of disablement, one that focuses on individual deficit and responsibility, and the other from a view that reminds us of the social context and catalysts for mental illness.3 This comparison will show avenues for further exploration, going beyond conventional criticisms of mental health portrayals that tend to be reduced to matters of violence, common clichés and whether a character is seen to be morally good rather than bad.4 These criticisms are common to campaigns that focus on the cultural prevalence of one-dimensional, pathological images of mental illness, serving to perpetuate discrimination towards, and fear of, people with mental health difficulties.5 However, according to Harper, there is a propensity to “focus on a rather undifferentiated notion of ‘violence to others’ as the sole criterion against which media images are judged.”6 It is unsurprising that a corollary of such approaches is the perceived need for characters who are likeable; “likeability” can be seen as the key criterion in “acceptance of” portrayals of disabled people by all audiences, and these are often associated with positive virtues in campaigns for better representations of all types.7 These qualities are actually quite loosely defined, finding their antithesis in “bad” traits such as cruelty, most obviously in depictions of people as murderers, violent characters or victims. Conversely, likeable characters tend to be seen as good at “creating emotional connections through the use of universally shared qualities.”8 As Harper suggests, this is likely to lead to overly simplistic analyses of cinematic and other media representations, potentially restricting the range of roles for characters experiencing mental distress and illness. Indeed, Sancho demonstrated how the virtues of likeable characters seem to be wrought from a combination of human weaknesses, comprised of recognizable traits that many of us are likely to identify with, and everyday dilemmas that resonate with viewers’ own experiences. Further, there is evidence to show that audiences tend to be put off by overtly political or moralizing messages in popular media, perhaps most evident when a character returns to 67

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“niceness” after a period of moral or mental decline, perhaps most likely to be seen as “smashing you over the head with a message.”9 These two films were chosen for their contextual similarity and because they both have unpleasant male characters with mental health difficulties as central protagonists. Stereotypes of mental health tend to be very gendered,10 with women often portrayed as over-sexualized and men as incompetent/violent in relationships.11 Both films also provide the opportunity to explore the intersections of mental illness with romance; this could be seen as a crucial area of representation, as romantic love can be seen as a key signifier of normality within films,12 driving many narratives, across numerous genres. Indeed, madness can be used as a narrative device to support wider macro-narratives of “normality” in romance-based genres, most obviously perhaps in the moral trajectories of characters within Fatal Attraction, directed by Adrian Lyne in 1987.13 Given its ubiquity14 one might argue that (usually monogamous) romance is perhaps seen as a central point of almost universal interest, perhaps reflecting a presumed appeal to everyone in the eyes of the producers15 (more so when—as in these two films—these stories are set within family settings). In Paddy Scannell’s terms these features would perhaps render romantic genres as a for-anyone-as-someone structure.16 This is a mode of communicative address purported to be “for me and for everyone.” Scannell identified several modes of address within communicative structures. Following Heidegger,17 he defines a for-anyone-as-someone product as something that is deemed to be “useful and usable to anyone,” anytime and anywhere, being standard, uniform and repeatable,18 ostensibly providing a universal service. Conversely a for-someone structure is a product that is defined as “really only useful to and useable by the person for whom it is made.”19 This is a communicative structure that Scannell identified, at the time of his writing, as being found in items such as home videos or photographs,20 perhaps now only attributable to those photographs and videos or writing we choose not to share. However, the pervasiveness of the for-anyone-as-someone structure can even be discerned within recent mainstream films that go beyond more traditional formats of heterosexual, and cisgender, monogamy. There is the doomed relationship in the romance-based drama The Danish Girl,21 where Einer and Gerda, the two main characters who are newly married and deeply in love, subsequently separate after Einar’s gender transition to become Lily. Similarly, there is the impossibility of a permanent coupling, which cannot be compromised with the career aspirations of Sebastian (a musician) and Mia (a writer and actress), the romantic protagonists in the romantic musical La La Land.22 Despite the thwarted love stories central to each of these films, both succeeded in drawing quite diverse large audiences,23 centered, as they were, around romance. Indeed many romance genres have been based on an acknowledgment of “confluent love”24 since the 1980s, with affection seen as more provisional, being based on mutual satisfaction, intimacy and emotion in the short term, rather than duty and long-term interdependence. This can be seen for example in the depictions of desire and narratives showing the impossibilities of love dominating “nervous romances” (e.g. Woody Allen films25). It is clearly in commercial filmmakers’ interests to make films that have the anyone-as-someone structures as they are deemed to have a “double character,” which is “always, at one and the same time, for me and for anyone.” Scannell says that this position expresses a we-ness articulating the human sociable life mediating between the impersonal (the they-world) and the personal (the my-world).26 Despite the (arguable) genre transgressions of The Danish Girl and La La Land, for example, this appeal to a mediation between the “they-world” and the “my-world,” understood by most (if not all) is crucial to our understandings as part of a collective audience. Thus, as popular cultural products, media that have this structure can be an “inexhaustible topical resource,”27 contributing to shared understandings (of what it is to be human). Indeed, one might argue that recent challenges to conventional norms are premised on the idea that the film industry as a whole is about appealing to anyone-as-someone as a white, heterosexual, non-disabled, 68

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cisgendered person. This can be seen in challenges made to the “whiteness” of the Oscars28 and can also be seen in criticisms of The Danish Girl as a film that sanitizes it subject matter in favor of stereotyped images of female sexuality and the denial of lesbian identities.29 However, many disability studies contributors’ work on cultural representation suggest that disability is seen as an exception to the norm by media producers, who position disabled characters and themes outside the my- and they-worlds. This tends to promote fixed and less negotiable understandings of what it is to be disabled, creating an otherness that serves to shape counter- or dis-identifications with disabled people (including those designated as “mad”) throughout the media (see endnotes 4 and 7, for example). The dividing line between independent film and mainstream films is sometimes difficult to discern and this is true for both of these films. Neither film chosen for my exploration of mental distress could be considered as an “art film,” which might be defined as niche, as being positioned for a more specific someone. As studio films, both can be seen as media that are accessible to all, being distributed in mainstream venues, despite their comparatively low budgets.30 However, although it can be considered a mainstream film,31 Greenberg has been categorized as a “smart film” by writers such as Perkins and Sconce.32 This arguably positions it as a niche medium, as a style characterized by irony and “affective force,” through a “strategy of ironic disengagement,”33 “critiquing bourgeois taste and culture.”34 As a film that has also been seen as an independent film,35 taking the smart film approach with “edgy content” and a “minimalist aesthetic,”36 Greenberg also avoided the presentation of simple answers to questions of what it is “to be human” and refused the unambiguous narrative closure favored by those using classic narrative structures,37 aimed at gaining large audiences.38 As a smart film that did not buy into the certainties of classic narratives, Greenberg risked its capacity (or ability) to attract larger audiences and box office receipts, despite using well-known stars such as Ben Stiller and Rhys Ifans (and especially as it featured Greta Gerwig, an actress associated with mumblecore films39). I will return to this topic at the end of the chapter. If it is true that romantic dramas, romantic comedy and so on are “useful and usable to anyone,”40 then both of these films provide an ideal vehicle to examine the contemporary portrayal of mental health and mental distress, based on personal stories that most of us would recognize. They focus on the immediate challenges the protagonists face after leaving psychiatric care. This ostensibly places their experience at the center of concern and provides good opportunities to challenge the normality genre,41 i.e. where madness is used primarily as a narrative prosthetic to revalidate ideas of (neurotypical) normality found in broader storylines. Further, the choice to place both these men in emerging relationships, and a wider nexus of social and family expectations, allows for the exploration of more complex issues, enabling audiences to establish engagement with a number of characters in ways that help us to negotiate relational understandings of actions and decisions. This should also allow a corrective to the individualistic way in which we discuss stories of mental health,42 which tend to perpetuate ideas of people with mental health problems as set apart.43 I will compare their relative merits as mainstream and smart films both of which are classified as “comedy, drama, romance” on IMDB.44 My aim is to show how the tone and style of such similar stories, and the ways in which they approach “normality” and disablement, through narrative structure and other cinematic techniques can lead to very different interpretations of the “problem of mental illness.”

Greenberg The title is the surname of the leading character, Roger Greenberg, played by Ben Stiller, a 40year-old man who has just left institutional care. He is not likeable, and there are few signs that he has the capacity for romance throughout the film. Ian Parker45 described Greenberg’s 69

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character as a “sour, haunted man—an asshole” and suggested that his character might be so offputting, or the film so dull, that one cinema had posted a sign saying “we must limit refunds to an hour past the start time.” Contrary to our expectations that mental illness will be used to create dramatic storylines while marginalizing the experiences of the character experiencing mental distress,46 and despite a distinct lack of drama, the film allows us stark and revealing reflections on Greenberg’s life. It gives us a reminder of the aching emptiness of life when the structures we construct to give us a sense of meaning are removed. Greenberg uses the lack of structure and meaning in his life to dis-identify with people and social conventions, often appearing to wear this as a badge of pride. Greenberg’s major personality traits are misanthropy, a lack of “normal aspirations” and little motivation to work or to climb social hierarchies. He also insists that he is making choices to opt out of conventional roles, as opposed to being a “loser,” “doing nothing deliberately.” He also seems to see himself as a critic of contemporary culture and cultural norms, a position he might believe to be enhanced by his outsider status. His unconventional attitude to relationships would commonly be regarded as unacceptable to many, especially as he is seen to act primarily out of immediate self-interest, blowing “hot and cold” in his attraction for Florence, his brother’s assistant (played by Greta Gerwig). To briefly outline the story, following a discharge from rehabilitation (the details of which are never disclosed), Greenberg is invited to stay temporarily in his brother’s Los Angeles family home, caring for their dog, Mahler, while they are on holiday. He had moved away to New York many years before so is now something of an outsider in the community. Despite his stated commitment to doing nothing, he is faced with a range of life issues, including unresolved matters from his past, which he attempts to resolve in a defensive but ambivalent manner. A long-running backstory—perhaps a key element of Greenberg’s life trajectory—is his attempt to reconnect with old friends, former band members. While one of these is still bitter that Greenberg had declined a potentially lucrative recording contract for the band many years earlier, Ivan, the other former member, is shown to make great efforts to repair their friendship. The film tells us little about Greenberg’s mental health. Most of what we learn about him is through his own articulation of himself and his interactions with others. Throughout the film Greenberg is faced with concerns about romantic relationships, his impending status as a middleaged man and his unwanted responsibility for an ailing dog. His negotiations with his own fluctuating desires and the expectations for him to conform to social pressures (driving a car, finding a job, a partner and a home) add to his edgy defensiveness, conspiring to exaggerate his selfdestructive and insensitive behavior. So, he risks his budding relationship with Florence by attempting to connect with a former girlfriend and refuses to engage directly with Ivan’s efforts to resolve the dispute that came between them. This film takes a risk to the extent that is likely that we will dislike Greenberg, and he probably reminds us of people we have met and criticized for their failure to “sort themselves out”; he may even remind us of ourselves and the haunting experience of loneliness or regret we may feel in low periods of our lives. It is also a slow and meandering film with no clear sense of direction. The awkwardness of his life and personality is matched by that of Florence, especially in the clumsy attempts they make to forge some kind of a relationship. His attempts to make new connections with his old friend, Ivan, are equally fraught, as they struggle to resolve old grievances and misunderstandings while creating new ones. We are not lulled into any sense that Greenberg is on a “journey of recovery.” Further, the audience is often encouraged to see the effects that he can have on those who love him; many of the close-ups in the film are of Florence. As closeup shots can be seen to express affect,47 and to show emotional change, these shots are often focused on her emotional reactions to Greenberg’s abrasive moments, but notably (before she 70

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even meets him) there is a close-up shot of her driving her car in the second scene, where she asks, “Are you going to let me in? Are you?” setting the tone for the rest of the film. Overall, close-ups in the film tend to be used sparingly, as they are in most smart films, serving to isolate characters, creating a “sense of disengagement,”48 emphasizing character and dialogue; it is unsurprising then that where they occur they are usually limited to Florence and Greenberg, allowing us to observe their emotions and their changing affective positions towards each other. Sancho suggests we often like characters because we can relate to many aspects of their characters of situations, one of which may be our frustrations with or enmity towards others. Against a one-dimensional stereotype we can also see that he has concerns for other people; this is exemplified in his prioritizing of Florence’s care when she has to get to the hospital for an abortion (from her previous sexual partner—perhaps the most unromantic of scenarios). While suggesting a deep ambivalence in his attitudes towards social approval, and his need for acceptance and belonging, such moments of tension often act as a critique of normative codes of conduct especially in following prescribed cinematic trajectories of romantic love, e.g. those featuring epiphanies and declarations of undying love. However, contrary to possible expectations, there is little direct comedy and even less romance, defying most conventions of these genres. The film avoids high drama, instead lightly drawing the divisions between characters and refusing to make harsh distinctions between right and wrong, between normal and weird. Rather, universal problems of social belonging and dis/connection were outlined, showing how simple it can be to appeal to human similarities, rather than sensationalized stories and/or portrayals of exceptionality.

Towards an Uncertain Ending After he and Florence first have sex he criticizes her for always returning to him. Given her acceptance of such behavior it would be simple to portray Florence as having mental health issues, or as the “victim” of an “abusive” man. Whether we resort to blame of him or her it would also be easy to portray her in terms of her flaws, as she is clearly depicted as the object of his dis/affections, and is presented as a person who lacks a strong sense of self. Her tendency to be quite passive, awkward and generous could play very easily to conventional stereotypes of femininities that are aligned with victimhood or self-abnegation, rather than the more empowered neoliberal versions of femininity typical of post-feminist forms of agency.49 However, despite his heartless dismissal of her, she cannot be fitted easily into female stereotypes, especially of victimhood or mental illness. Her portrayal is more multidimensional and perhaps associated more with virtues such as strength, resilience and understanding. We see the vulnerabilities and strengths of both characters over the course of this film and other vacillations that add to their fluctuating, and ambivalent, decision on whether they should get together. Perhaps the only conventional trope of romance genres used here is that boy loses girl after a disagreement although, unlike most romances, this is all of their own making, having the impact of demystifying romantic love in favor of a focus on self-agency and responsibility. Other common romance themes are not really there. The hero, if there is one, is more likely to be read as Florence for her stoicism. The core smart film trait of miscommunication and “emotional dysfunction”50 is heightened through the “throwback naturalism” of cinematographer Harry Savides, including a 1970s style lack of resolution, to “evoke a feeling.”51 An often banal and stark mise en scène utilizing long takes and long shots creates distance and highlights the isolation of the characters. The film resists a happy ending and we are left to make our own minds up about where they are heading; Greenberg finally tells Florence that “he was in the hospital” (for rehabilitation) but that it’s not what defines him and she says, “I understand.” So, the film begins and ends with 71

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references to Greenberg’s mental health, with no further development or detail and no resolution of problems and barriers he may have encountered.

Silver Linings Playbook Silver Linings Playbook (henceforth SLP) seems, at first glance, to have a very strong resemblance to Greenberg. Again, we see the central male protagonist Pat (Bradley Cooper), released from a psychiatric hospital. And again, he meets the woman, Tiffany Maxwell (Jennifer Lawrence) who challenges him and effects changes in his life soon after his return to his parents’ home (a condition of his release). In both cases, the story is a slow preamble to their eventual romantic relationship, with much resistance from the male lead along the way. This time his condition is named as bipolar. Pat is situated within the demands and worries of his family, consisting of a gentle and quite submissive mother, domineering father and comparatively successful brother. In this and a few other senses, there are resemblances to smart film—particularly in the tendency to use the family as the foundation and in emphasizing emotional and familial “dysfunctions.” Pat’s world consists of a lot of anger, including violent scenes with his father (Robert de Niro) at home, volatility and an obsessive desire to win his former wife, Nikki’s (Brea Bee), love back. We are advised that the violence shown to her extra-marital lover (when Pat finds them in the shower), and his continuing harassment of her, were the real reasons behind his confinement to psychiatric treatment, agreed as part of a plea bargain. After attending a dinner at his friend’s house where he meets Tiffany for the first time, he begins a relationship characterized by ambivalence and rejections of Tiffany’s advances. These serve to underline that Pat has delusional and obsessive beliefs about his former relationship, but a dark form of comedy is used to demonstrate his misogynistic views towards women. In a scene where he and Tiffany meet in a café, he outlines Tiffany’s previous “promiscuous excesses” as a “worse” form of madness than his own. This is done when they have dinner together (where he orders cereal to signify that this is not a date). Simultaneously, he also has some dependence on a tenuous allegiance being built with Tiffany, based on their mutually shared feelings of difference from their friends and families. Pat sees that Tiffany may help him to get a letter to his estranged wife, but when asking for her help and loyalty he also makes it clear that he disavows his embryonic relationship with her. He compounds his misogynistic views of her by making the terms of this very clear—saying that he wouldn’t like his wife to think that he would even envisage a relationship with someone who was capable of such sexual transgressions. This is a pivotal moment in Tiffany’s character development where she loses her temper and challenges the assumptions he makes about women and madness as unacceptable and misogynistic. In the breakfast scene where he is enlisting her help, she finally loses her temper. Unlike Greenberg, Pat’s character does little to go beyond the violent obsessive avenger stereotype52 common to depictions of men experiencing mental illness and, although the audience may well identify with his experiences of lost love, it would be understandable that violence and stalking behaviors will mitigate against his likeability, especially after his lack of compassion and cynical efforts to exploit Tiffany’s affection. As an audience for romantic comedy drama, the preferred, and perhaps most generous, reading at this point is perhaps to invest our emotions in hoping that he gets therapeutic relationships with his family and friends.

Towards a Happy Ending Contrary to this quite explicit gendering of madness, reversed and exposed to some degree, Tiffany and Pat bond around their experiences of outsider status and need for medication. Other than her apparent sexual deviance (and subsequent reformation) Tiffany is shown to have no 72

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other (obvious) symptoms of madness, and seems to be used in a therapeutic manner to aid Pat’s recovery. Significantly, we can see signs of his rehabilitation that continue to play on this gendering of madness and relationships of care and intimacy. Pat later defends Tiffany’s virtue and, invoking her previous “sex addiction,” suggests she needs protection when other males make advances, implying that he is the person who needs to “fix the wing” of a “girl like this.” Pat’s initial anger was attributed, in part, to his refusal to take his medication—despite considerable pressure exerted by his parents and therapist alike. He gives in and his life begins to improve, about halfway through the film, when he begins dance lessons, as part of a deal made with Tiffany. Pat becomes calmer and more considerate as the film proceeds, achieved with the aid of medication, a desire to redeem himself in the eyes of his former wife and perhaps also due to his regular dance practice. Other resolutions towards the end of the film include making peace with his father—who is clearly portrayed as a major cause of Pat’s problems—as an obsessive, and delusional, if comic and mellowed gambler (an “exploding man” in Pat’s words). This closure of father/son narrative is quite typical of commonly used Oedipal trajectories, an oft- (or over-) used dramatic device in films and other forms of storytelling.53 In both his and his father’s case the women who come to rescue them appear to be the “silver lining,” as essential female forces upon which their future mental stability depends. Overall, this film borrows heavily from cultural stereotypes of madness that are over-reliant on oversexualized, or passive, enabling women and aggressive men for the creation of drama and the eventual resolution of conflicts. In Pat’s case, the improved outcomes are achieved by a transformation of vulnerability, neediness and bigoted views on women, into more a conservative form of protective masculinity,54 with the aid of compliance with medical authority. Any underlying causes for his behavior remain untouched, and examination of the internal experiences of bipolar disorder are ignored—it is clearly a case of moving him from the wrong to the right form of behavior, a process that involves rapprochement with his romantic fate and mutual respect between him and his father. Just when we think it’s all over there is a declaration of love, which most of the audience have probably been hoping for, amid a suddenly deserted street, replete with the semiotic schmaltz of Christmas lights. This culminates in a kiss, with sustained, fast-arc shots (perhaps suggesting wholeness), followed by a panning out. The final scene begins with an establishing shot of his parents’ house and shots of domestic artefacts within their home. The final scene of the film confirms how much this story of mental illness is based on heteronormative ideals, as in the end the whole family effect a conventional, happy normality after resolution (of the film’s narrative). Starting with a long shot of the family home and a voice-over by Pat, where he tells us that “the world can break your heart” but that he is very grateful for the help of his loved ones (perhaps suggesting the importance of social contexts, but firmly placed within the individualistic ties of family duties and obligations), the camera moves on to explore their home. First there are close-up shots of the family members’ personal artefacts; in this case, the close-up camera shots perhaps denote affective shifts in Pat’s perspective, to a much deeper appreciation of his family’s values. After that the viewer is provided with a cameo epilogue of a family experiencing peace, happiness and continuity at home; father and son and their friends engaged in low-level gambling, mother cooking and giving advice and Tiffany moving over to sit on Pat’s knee while his mother and friend look on lovingly. Here, the family’s movements are shown in mid-length shots, allowing us to observe their interactions within the home as if we were there, illuminating the growing intimacy and tenderness between them. This is, in the end, a story of redemption, of rehabilitation effected by medication, of heteronormativity and the love of a “good woman.” A tale of the need for normality and the recuperative powers of love—whatever they are. 73

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Conclusion The leading women in both films are perhaps more likely to be seen as “just like us”55 (if we regard ourselves as complex beings with multiple and conflicting needs and desires), especially as we see more of their struggles and strengths with which we may be able to identify. In Greenberg’s case, he isn’t very likeable but it is likely that audiences will feel his pain and anxieties, producing a strong emotional verisimilitude, whereas the main focus on Pat’s likeability seems centered around his conformity and journey, as a man, from wrong to right. If judged on box office figures it is the rehabilitation journey of SLP, with a clear delineation of cause and effect, which is welcomed by most film viewers.56 Perhaps this is the defining feature of romantic comedy dramas and commercially successful films, and an important point of difference in the episodic (rather than act-based) structures of art films and smart cinema.57 This seems to have significance for representations of mental health, for characters of all genders.58 Earlier in the chapter I suggested that narratives that follow the for-anyone-as-someone structure are likely to be useful and usable to everyone. Analysis of the two films has suggested that this may not be the case. SLP is, in the end, a story of redemption, of rehabilitation effected by medication and the love of a good woman, which seems to offer fewer viewing positions for men and even less to those who feel stigmatized through the imposition of mental health labels and therapeutic answers. This is likely to strengthen identifications with non-disabled stereotypes of ableist normality and neurotypicality. Conversely, Greenberg seems to be a story that highlights non-categorical forms of human frailty and vulnerability, ostensibly appealing to us all. Yet, it is Greenberg that attracts the niche audience, common to smart films.59 In terms of “the drama of communication”60 Greenberg is an outstandingly polyphonic text that (as Florence might say) lets us all in and makes Greenberg the subject of his own story alongside the dissenting voices of others, whereas analysis of SLP shows how the “speech genre” used is a comparatively monologic one. Where Pat is at the center of the drama, he is made an object rather than subject of his own story. Tiffany, having completed her own journey of madness is the primary narrative agent, alongside the supports of therapeutic “silver linings” discourse, medication and the centering of the heteronormative family as a core of mental health. Conversely, like most smart films,61 Greenberg places the individuals and the family at the center of concerns, but does so in ways that implicitly offer a wider cultural critique. Greenberg shows us how compelling stories featuring mental distress can be, and how they can help us to think in terms of similarity rather than pathological forms of difference, placed as it is in symbolic opposition to conventional Hollywood films. Perhaps a key dimension of these films, for offering new understandings of mental illness, is in their challenge to the “action image,”62 particularly in the ways they “cast doubt” over the permanence and possibility of change.”63 However, the comparative success of SLP may tell us something about the power of marketing, and the limited audience for smart films, but, perhaps most of all, of the resistance (beyond smart directors) of the film industry and society to view mental health in terms of shared human vulnerabilities.

Notes 1 Greenberg, directed by Noah Baumbach (New York: Focus Features, 2010). 2 Silver Linings Playbook, directed by David O. Russell (New York: The Weinstein Company, 2012). 3 I draw from all three areas of study. I am using a disability studies approach that borrows from a variety of strands within critical/disability studies as a whole, seen essentially as an interdisciplinary field that conceptualizes disability as disablement, a form of oppression that emanates from society. I am using mad studies in a similar way, as a newly emerging area of study related to disability studies that emphasizes the voices of those labeled mad; see Gillis’ explanation, for example: Alex Gillis, “The Rise of Mad Studies,” University

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4

5 6 7

8 9 10 11

12

13 14 15 16 17 18 19 20

21 22 23

24 25

26 27 28

29

30

Affairs, accessed May 31, 2017, www.universityaffairs.ca/features/feature-article/mad-studies. I use elements from the vast area of film studies; following an approach commonly taken when fusing film with disability, I focus primarily on narrative and visual analysis, but also on relevant aspects of genre. Peter Byrne, Screening Madness: A Century of Negative Movie Stereotypes of Mental Illness (London: Time to Change, 2009), www.time-to-change.org.uk/sites/default/files/film-report-screening-madness-time-tochange.pdf. Stephen Harper, “Understanding Mental Distress in Film and Media: A New Agenda?” Perspectives in Public Health 128, no. 4 (2008): 170–174. Harper, “Understanding Mental Distress in Film and Media,” 170. Jane Sancho, Disabling Prejudice: Attitudes Towards Disability and Its Portrayal on Television (London: British Broadcasting Corporation, Broadcasting Standards Commission and the Independent Television Commission, 2003), www.bbc.co.uk/guidelines/editorialguidelines/assets/research/disabling_prejudice.pdf. Sancho, Disabling Prejudice, 10. Jeffrey Gavin, “Television Teen Drama and HIV/AIDS: The Role of Genre in Audience Understandings of Safe Sex,” Continuum 15, no. 1 (2001): 85. See Norden’s Analysis of the Obsessive Avenger Stereotype, in Martin F. Norden, The Cinema of Isolation: A History of Physical Disabilities in the Movies (New Brunswick, NJ: Rutgers University Press, 1994). Richard J. Bischoff and Annette Debolt Reiter, “The Role of Gender in the Presentation of Mental Health Clinicians in the Movies: Implications for Clinical practice,” Psychotherapy: Theory, Research, Practice, Training 36, no. 2 (1999): 180–189. Jessica Robyn Cadwallader, “Like a Horse and Carriage: (Non-) Normativity in Hollywood Romance,” M/C Journal: A Journal of Media and Culture 15, no. 6 (2012), http://journal.media-culture.org. au/index.php/mcjournal/article/viewArticle/583. Fatal Attraction, directed by Adrian Lyne (Hollywood, CA: Paramount Pictures, 1987). Kathrina Glitre, “Genre, Cycles and Critical Traditions,” in Hollywood Romantic Comedy (Manchester, UK: Manchester University Press, 2006), 9–40. See writers such as Tamar Jeffers McDonald, Romantic Comedy: Boy Meets Girl Meets Genre (London: Wallflower, 2006). Paddy Scannell, “For Anyone-as-Someone-Structures,” Media, Culture and Society 22 (2000): 5. Martin Heidegger, Being and Time (Oxford: Blackwell, 1962). Scannell, “For Anyone-as-Someone-Structures,” 6. Scannell, “For Anyone-as-Someone-Structures,” 7. Scannell’s distinction no longer holds true in the same way it did, with processes of disintermediation reshaping hierarchies of production and consumption, and new understandings of what is to be shared, but this concept still offers a valuable way of analyzing popular culture. The Danish Girl, directed by Tom Hooper (New York: Focus Features, 2015). La La Land, directed by Damien Chazelle (Santa Monica, CA; Summit Entertainment, 2016). As at September 2017, The Danish Girl had grossed USD 64.2 million worldwide (more than four times the USD 15 million cost of making the film) and La La Land had grossed USD 445.6 million (nearly 15 times more than the film’s production budget of USD 30 million). Production budgets sourced from IMDB; Box-office sourced from Box Office Mojo (as at September 6, 2017). Anthony Giddens, The Transformation of Intimacy: Sexuality Love and Eroticism in Modern Society (Stanford, CA: Stanford University Press, 1992). These themes are explored by Deborah Chambers in Representing the Family (London: Sage, 2001), 135. Chambers draws on the work of Stephen Neale. “The Big Romance or Something Wild? Romantic Comedy Today,” Screen 33, no. 3 (1992): 284–299. Scannell, “For Anyone-as-Someone-Structures,” 9. Scannell, “For Anyone-as-Someone-Structures,”19. This can be seen in articles such as David Cox “#OscarsSoWhite: Who Is Really to Blame for the Oscars’ Lack of Diversity?” Guardian, February 16, 2016, www.theguardian.com/film/2016/feb/25/oscarssowhiteright-and-wrong-academy-awards-audience. For example, Kate Taylor conceptualizes The Danish Girl thus: “An Inoffensive Drama on a Transgender Woman’s Experience in the 1920s,” in Globe and Mail, December 11, 2015, www.theglobeandmail.com/ arts/film/film-reviews/the-danish-girl-an-inoffensive-drama-on-a-transgender-womans-experiences-in-the1920s/article27688773. Greenberg’s production budget was USD 25 million, accessed May 21, 2017, http://powergrid.thewrap. com/project/greenberg. SLP had a smaller budget of USD 21 million, accessed May 31, 2017, www.boxof ficemojo.com/movies/?page=main&id=silverliningsplaybook.htm.

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Alison Wilde 31 Maria San Fillipo, “A Cinema of Recession; Micro-Budgeting, Micro-Drama, and the Mumblecore Movement,” Cineaction 85 (2011), www.cineaction.ca/wp-content/uploads/2014/04/issue85sample1.pdf. 32 Claire Perkins, American Smart Cinema (Edinburgh: Edinburgh University Press, 2012); Jeffrey Sconce. “Irony, Nihilism and the New American ‘Smart’ Film,’” Screen 43, no. 4 (2002): 349–369. 33 Perkins, American Smart Cinema, 5. 34 Perkins, American Smart Cinema, 6. 35 Greenberg has been nominated for awards such as the Film Independent Spirit Awards in 2011, accessed September 9, 2017, www.imdb.com/title/tt1234654/awards. 36 Alisa Perren, “Sex, Lies and Marketing: Miramax and the Development of the ‘Quality Indie’ Blockbuster,” Communication Faculty Publications 1 (Atlanta, GA: Georgia State University, 2001), http://scho larworks.gsu.edu/communication_facpub/1. 37 Annette Kuhn, Women’s Pictures: Feminism and Cinema (London: Verso, 1994). 38 Kristin Thompson, Storytelling in the New Hollywood (London: Harvard University Press, 1999). 39 Maria San Fillipo, “A Cinema of Recession; Micro-Budgeting, Micro-Drama, and the ‘Mumblecore’ Movement,” Cineaction 85 (2011), www.cineaction.ca/wp-content/uploads/2014/04/issue85sample1.pdf. 40 Scannell, “For Anyone-as-Someone-Structures,” 9. 41 Proposed in the work of disability studies scholars such as Paul Darke, “Understanding Cinematic Representations of Disability,” in The Disability Reader: Social Science Perspectives, ed. Tom Shakespeare (London: Cassell, 1998); and David Mitchell and Sharon Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan, 2000). 42 For example, Juliet Foster, “Unification and Representation: A Study of the Social Representations of Mental Illness,” Papers on Social Representations, 10 (2001): 3.1–3.18. 43 See, for example, J. L. Roelandt, A. Caria, L. Defromont, A. Vandeborre and N. Daumerie, “Representations of Insanity, Mental Illness and Depression in General Population in France,” L’Encéphale 36, no. 3 (2010), 7–13. 44 Greenberg, accessed May 24, 2016, www.imdb.com/title/tt1234654; Silver Linings Playbook, accessed May 24, 2016, www.imdb.com/title/tt1045658. 45 Ian Parker, “Happiness: Noah Baumbach’s New Wave,” New Yorker, April 29, 2013, www.newyorker. com/magazine/2013/04/29/happiness-4. 46 See Darke, Mitchell and Snyder, Narrative Prosthesis. 47 Gilles Deleuze, trans. Hugh Tomlinson and Barbara Habberjam, Cinema 1: The Movement Image (Minneapolis: University of Minnesota Press, 1986). 48 Perkins, American Smart Cinema, 95. 49 Joanne Baker, “Claiming Volition and Evading Victimhood: Post-Feminist Obligations for Young Women,” Feminism & Psychology 20, no. 2 (2010): 186–204. 50 Sconce, “Irony, Nihilism.” 51 David Schwartz, “That 70’s Look—The Throwback Naturalism of Cinematographer Harris Savides,” Moving Image Source Co-Presented with Reverse-Shot (Museum of the Moving Image, March 26, 2010), www. movingimagesource.us/articles/that-70s-look-20100326. 52 Norden, The Cinema of Isolation. 53 Alison Wilde, “Disabling Masculinity: The Isolation of a Captive Audience,” Disability and Society 19, no. 4 (2004): 355–370. 54 Wilde, “Disabling Masculinity.” 55 This is a concept used by Jane Sancho, Disabling Prejudice to show affinities with media characters seen to be similar to ourselves and to have universal qualities. 56 The box office figures for SLP and Greenberg contrast sharply. As at May 2016, SLP had grossed USD 132 million in the United States and USD 104 million in other territories, accessed May 20, 2016, www. boxofficemojo.com/movies/?id=silverliningsplaybook.htm; Greenberg only made USD 4.2 million in the United States and USD 2 million in other territories, accessed May 20, 2016, www.boxofficemojo.com/ movies/?id=greenberg.htm. 57 Sconce, “Irony, Nihilism,” following David Bordwell, Narration in the Fiction Film (Madison, WI: University of Wisconsin Press, 1995). 58 The consideration of cis and trans women and men and those identifying as other genders is beyond the scope of this chapter. However, recent films featuring trans characters often have storylines where their trans identities are portrayed as a barrier to romantic relationships—this includes more mainstream fare, e.g. The Danish Girl (Tom Hooper, New York: Focus Features, 2015) and independent films such as Tangerine (Sean S. Baker, Los Angeles, CA, Magnolia Pictures, 2015). 59 Perkins, American Smart Cinema; Sconce, “Irony, Nihilism.”

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60 Martin Flanagan, Bakhtin and the Movies: New Ways of Understanding Hollywood Film (Basingstoke, UK: Palgrave Macmillan, 2009). 61 Perkins, American Smart Cinema; Sconce, “Irony, Nihilism.” 62 Deleuze, Cinema 1. 63 Laura Henderson, “American Smart Cinema by Claire Perkins,” Book Review, Senses of Cinema 69, December (2013), http://sensesofcinema.com/2013/book-reviews/american-smart-cinema-by-claire-perkins.

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7 STILL JULIANNE Projecting Dementia on the Silvering Screen Sally Chivers

Julianne Moore won 22 Best Actress awards for playing Alice Howland, a linguistics professor diagnosed with early-onset Alzheimer’s disease, in Still Alice.1 She also won the Courage in Acting Award from the Women Film Critics Circle and, astonishingly, was nominated in the category of Actress Defying Age and Ageism by the Alliance of Women Film Journalists. This is astonishing for a number of reasons, but among them is the decided ageism Moore conveys even when describing the role. For example, she began her Oscar acceptance speech by joking, “I read an article that said winning an Oscar could lead to living five years longer. If that’s true, I’d really like to thank the academy because my husband is younger than me.”2 In this coy quip, Moore ignores the statistic that women’s life expectancy in the United States is almost five years longer than men’s.3 The Academy rewards her for so poignantly portraying a character with a disease popularly associated with aging poorly. She uses that moment to signal quite clearly that she is still relatively young, as Jay Dolmage cleverly puts it in a Waterloo Region Record article on March 13, 2015, “reminding us that she is not ‘Still Alice’ at all.”4 Alice Howland may be ill but Moore portrays her Oscar success as a victory over aging in the form of increased longevity—the opposite of Howland’s fate. Moore plays a character depicted as having early-onset Alzheimer’s disease, thereby prematurely afflicted with the disease that has also become the quintessential symbol of failing to age well. That her performance receives this level of acclaim, and particularly the Oscar nod, differentiates the movie from a general trend of depicting dementia onscreen. While Still Alice does follow patterns of dementia depiction, it also fits very well within a tradition of mainstream cinema depictions of disability. As such, the film invites an analysis of the relationship between cinema portraying disability and that portraying late life. The thorny intersection between disability and old age may at first glance seem commonsensical—older adults and people with disabilities face similar prejudices and disadvantages. Sometimes they have collective needs, in terms of curb cuts, priority seating, large print. As Leni Marshall has argued, people with disabilities and seniors advocates ought to collectively agitate for a world more suited to their embodiments.5 However, assuming that older adults and people with disabilities automatically go together is also nonsensical. Disabled people are by no means necessarily old. The disability community can be as ageist as any other youth-dominated social group. Older adults can be impressively ableist. And growing old with a disability can be extremely different from growing old in a temporarily able body. Indeed, the popular conflation of disability with old age compels disability activists and scholars to assert, sometimes too vehemently, that disabled people are by no means necessarily old. Seniors advocates and age studies 78

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scholars similarly make intricate claims that old people ought not to be dismissed since they are not necessarily disabled, implying (presumably unintentionally) that people with disabilities might deserve different treatment and that a worthy old age is one free of disability. The potential for a negative conflation of old age with disability results in the avoidance of more helpful elements of combining the two categories conceptually, so that the tools of disability studies and the disability movement are rarely used well in the consideration of and actions for older adults. Because disability studies articulates the mechanisms, insidiousness and shortcomings of ableism, it offers a useful set of ways—especially the idea that disability is central to the human condition—to think about the relationship between old age and disability in cinema. And the portrayal of dementia in mainstream cinema exemplifies the intricacies of the relationship between aging and disability, particularly the labyrinthine relationship between ableism and ageism. Some cinematic portraits of aging conceal their ableism behind assertions of ongoing vigor akin to claims of the anti-aging industry. Films such as The Bucket List6 and The Best Exotic Marigold Hotel,7 for example, argue for the ongoing achievements of worthy seniors who try hard enough, make the right decisions or have enough money that put pressure on older adults who either cannot or do not want to continue to pretend to be young.

The Dementia Plot More prominently, the (unnecessary) horror brought to the fore by a portrait of dementia promotes the ableism behind broader cultural fears about population aging. Since the turn of the twenty-first century, the number of films that feature old age prominently has increased. In tandem, films featuring characters with dementia, especially but not only Alzheimer’s disease, has increased. Heightened awareness of the passing of time was induced by the turn of the millennium, which brought a wave of nostalgia. This consciousness enhanced the focus on commemoration that came with 9/11. Panic arose in response to the so-called silver tsunami, ageist and unfounded fears that a veritable wave of needy seniors will drown the younger population waiting on the shore.8 These cultural emotions work together to set up dementia as a sort of bogeyman. Characters with dementia are depicted as not only old but also as having an illness that typically comes later in life and that threatens the one thing older adults continue to be valued for, their representation of the past. They thus offer a vehicle to convey the horror of aging stripped of its potential value. The characters are also a sign of disability past its supposed due date.9 When people respond vehemently to memory loss on-screen, they are noticing the ways in which acquired disabilities scare them. Thus, when Peter Bradshaw asks in his Guardian review on June 30, 2011, “who will do the drab, menial work of … looking after Nader’s poor, incapable father?”10 in reference to A Separation11 and when William Arnold in his Seattle PostIntelligencer review on June 24, 2004 refers to “old age and the fragility of the human body” as “love’s biggest obstacle”12 in reference to The Notebook,13 they situate dementia as burdening younger generations and impeding the better parts of life. The impetus that invites fear, pity and disgust about aging is related to the impetus of ableism. Still Alice’s Alice Howland, because she has early-onset Alzheimer’s, becomes horrifically (supposedly) old prematurely: she presents a character who is not at all old going through the experience mass culture projects as the worst way to grow old, requiring care and impeding romance. Thus the film amplifies the combination of ableism and ageism to an extent that would be humorous if the film was not so well received, being hailed as both convincing and moving. Through characters who are experiencing age-related memory loss, cinema exaggerates everything the contemporary populace is taught to fear about growing old, not only disability, but also loss of self, loss of function, loss of home. A character with dementia might be depicted urinating in a public flowerpot (like Martin in A Song for Martin14) or smearing feces 79

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on the wall (like Lennie in The Savages15). She might run away or just become dangerously lost (like the central character in Iris16 and Fiona in Away from Her17). The person with dementia care needs will be portrayed as straining domestic arrangements to their breaking point (like Irene in Still Mine;18 Nader’s father in A Separation; Emilio in Arrugas19). Images of the patient’s brain will likely be shown to family members to explain that there is no hope for cure and that it is time to begin what is too often depicted as a long goodbye (as occurs in Iris, Still Alice, The Savages, A Song for Martin). While these films—notably not all or even mainly Hollywood films—fit into mainstream cinema’s pattern of portraying disability as something to pity and fear, they play up the ways in which dementia is something that could strike anyone. Dementia comes to symbolize what audience members are assumed to fear about growing old, exaggerated in the form of a loss of physical, mental and social control. While dementia is within the potential experience of most people in the audience, either individually or among their immediate social networks, it is often narrated as a horrifying moral lesson to remind people to age conscientiously, cautioning them to follow public health recommendations such as eating well, exercising moderately and doing Sudoku puzzles, as though responsibility for disease rests on the individual. Of course as part of dementia, bodily functions can be aggressively unruly, people do forget where they are, it is incredibly difficult to figure out the best way to arrange care and doctors do present convincing brain images to people who have dementia and, more often, to their families. However, people with dementia also have varied rates of disease progression, they have loving relationships, they can develop new forms of expression, including through art and they are capable of incredible emotional engagement. There are many other ways to tell the story of dementia and to paint a cultural picture of population aging. But, similar to the trajectory of derogatory depictions of disability in mainstream cinema, a dominant dementia plot emerges that emphasizes, and even exaggerates, some elements of what might be a genuine experience of such illnesses and diminishes or even ignores others. Thus arises a dementia plot, similar to the nineteenth-century marriage plot, wherein the characters court care, and looming disaster, rather than each other. Still Alice fits eerily well into the dementia plot pattern, despite Alice’s (and Moore’s) relative youth, which the film also goes out of its way to emphasize. The film begins with the celebration of her birthday, and opening lines have her husband point out that she is 50 years old, but looks 40, presumably meant to be both exposition and a compliment. Alice’s relative youth and extreme beauty heighten the tragedy of Alice’s quick diagnosis. Her extreme intelligence, marked by the fact that she is a linguistics professor at Columbia, further accentuates the calamity. How much more tragic, then, are the difficulties she begins to have with her mind and, especially, with language. The scene wherein Alice receives her diagnosis distinguishes itself from the typical scenes in dementia movies because Alice is present during the explanation of an image of her brain and converses with her doctor about its implications. While dementia movies frequently depict family members arguing with a doctor to assert their own knowledge of their loved one, Alice’s husband wields in-depth medical knowledge in the disbelieving dispute with the doctor delivering what is treated as a death sentence by the movie. Still Alice uses Alice and her husband’s intelligence, their intense awareness of the significance of her disease, to delve even further into the exaggerated tragedy of illness.

Still Alice and Disability Devices Still Alice takes the dementia plot further by being at least doubly eugenic in its supposedly moving, apparently realistic depiction of a woman prematurely struggling with an Alzheimer’s diagnosis and then increasing symptoms of the disease. Through questioning, Alice and her 80

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husband rapidly learn that she has an extremely rare genetic form of Alzheimer’s disease. To continue to heighten the drama, Alice’s daughter tests positive for the gene while she is undergoing fertility treatments, so she has a 100 percent chance (according to the script) of developing the same disease as Alice and her embryos might be tainted by the threat of senility. What should have been the happy news of Anna’s daughter’s pregnancy becomes a harbinger of familial doom, but there is some hope for the future since there is also an embryonic test available “to make sure the baby’ll be okay” (and they apparently are). The only other thing left to save is Alice’s husband’s (Alec Baldwin’s) career, which will require some difficult care decisions, another hallmark of the dementia plot. However Alice, soon after her diagnosis, tries to circumvent the eventual need of around-the-clock care by creating a video message to the ill Alice she fears she will become. She horrifyingly counsels her later self on where to find pills that newly diagnosed Alice stashes away, so that ill Alice can commit suicide. Ill Alice almost manages, but she drops the pills and then, tragically or luckily depending on the viewer’s perspective, forgets what she was trying to do. The eugenic overtones that haunt disability history seep into Still Alice. The backdrop of disability film and the lens of disability theory allow an alternative perspective on how Moore’s performance of Alice does more to reinforce ageism than to challenge it, even when compared with a deeply ageist pattern of representing dementia. In emphasizing during her acceptance speech that she is “still Julianne” rather than the prematurely dementing middle-aged professor she plays in the film, Moore draws attention to how her many awards victories fit into a long-standing pattern, noted by many disability studies scholars: That is, an able-bodied actor portraying a disabled character offers a quick route to the Oscar podium. As Dolmage succinctly notes, “Hollywood loves movies about disability. But neither Hollywood nor the Academy Awards seem to really like disabled people.” As many disability scholars point out, Hollywood revels, rather, in the apparent alchemy produced by hyper-able, exaggeratedly perfect actors playing disabled imperfect characters in a way that shores up the assumed normative strength of audience members via collective pity and fear.20 Charles A. Riley II explains the phenomenon with flare: “The Academy adores feel-good stories starring major names willing, briefly, to forgo their customary leaps from burning buildings or steamy bedroom exploits to jerk tears from devoted fans with a sanitized impression of some poor sod with a disability.”21 Notable examples fit into patterns of disability representation mentioned by Martin Norden in his Cinema of Isolation: such as tragic cripples, idiot savants, heartwarming figures of fun. The other type Norden mentions, the disabled avenger, though highly prevalent in mainstream plots, does not seem to merit Oscar nominations.22 Instead those go to actors such as Jon Voight for playing wounded veteran Luke Martin in Coming Home;23 Christopher Walken for Nick Chebotarevich, a veteran with PTSD, in The Deer Hunter;24 Dustin Hoffman for playing the autistic savant Raymond Babbitt in Rain Man;25 Daniel Day Lewis for his supposedly inspirational performance of Christy Brown, a man with cerebral palsy, in My Left Foot;26 Al Pacino for playing the grumpy, blind misogynist Frank Slade in Scent of a Woman;27 Holly Hunter for playing the ironically mute Ada McGrath in The Piano;28 Tom Hanks for enlivening the endearing cognitively disabled title character in Forrest Gump;29 Geoffrey Rush for playing artistic genius David Helfgott gone vaguely mad in Shine;30 Jack Nicholson for playing the obsessive-compulsive Melvin Udall, cured by a pill, in As Good as it Gets;31 Russell Crowe for playing the schizophrenic genius John Nash in A Beautiful Mind;32 Jamie Foxx for portraying the blind musician in Ray;33 Hilary Swank for portraying the paraplegic with a death wish Maggie Smith in Million Dollar Baby;34 Colin Firth conquering King George VI’s stammer in The King’s Speech;35 Meryl Streep for the eccentric yet strong Margaret Thatcher in The Iron Lady;36 Eddy Redmayne for playing the famous physicist with amyotrophic lateral sclerosis (ALS), Stephen Hawking, in The Theory of Everything;37 and, of course, Julianne Moore for Still Alice. Many of these celebrated actors, though renowned 81

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for their long successful careers, found their sole Oscar success when they played a character with a mental or physical disability, fitting into a role designed to evoke pity and/or fear. The popularity of this cinematic phenomenon of what some have come to call cripface or cripdrag, an able-bodied person faking disability, reveals a set of assumptions about what it means to be disabled and what disability brings to art.38 As Frances Ryan points out in an article in the Guardian on January 13, 2015, as with blackface minstrelsy, characters in these movies “use prosthetics or props to alter their appearance in order to look like someone from a minority group.”39 In doing so, they engage in a form of mimickry for humor, pity, horror or some combination. Cripface is not adopted to portray the everyday life of disabled characters; nor is it used to convey a character who just happens to have a disability that the plot does not focus on. But because mainstream cinema’s interest in disability is largely exploitative—characters have disabilities in order to forward a melodramatic plot or shore up the strength of apparently non-disabled characters—these are virtually the only disabled characters in cinema. Hence, these characterizations continue to make it unlikely that disabled actors will acquire significant work in Hollywood. And these casting choices allow for disturbing before and after shots, so that Maggie Smith in Million Dollar Baby, for example, appears in her full athletic able-bodied glory and then in her suicidal bed-ridden disabled shame, as the film conveys it. Even more disturbing, the casting of able-bodied actors allows for fantasy sequences in which a disabled character dreams of being non-disabled, which is then filmed to enhance the actor’s fully bodied glory, such as when Gong-Ju (played by Moon So-Ri) floats into a dance sequence in Oasis,40 for example, or when Artie Abrams (played by Kevin McHale) gets out of his wheelchair to dance in the television show Glee.41 Such fantasies are further perpetuated at the award ceremonies, which feature the able-bodied actors climbing the steps to Oscar stage to accept acclaim for their appropriation, as though disability is a magical adornment. As s. e. smith pointed out in xojane on February 4, 2015, disability representation becomes about how talented—and brave—the actors are to take on such difficult roles so far from their supposedly perfect selves and how meaningful a statement the directors and producers intend to make.42

Defying Age Promotes Ageism: Awards and Older Actresses Whereas for a younger actor taking on a part that requires faking a disability can accelerate the path to the Oscar podium, for an older actress outright disability, particularly associated with cognitive function, is not as celebrated a role. Older actresses face quite a predicament throughout the film and television industry. The mainstream press has started to pick up stories wherein prominent older, and fairly young, actresses deride the lack of meaningful roles for women of any age as well as the diminishment of roles for women as they age. Despite these enormous challenges facing actresses seeking on-screen work as they age past 40, who are more likely to play the mother than the love interest of a male actor the same age as them, the Academy savors those women who manage to get parts and are willing to brave the harsh criticism of their changing appearance, who appear to age gracefully or perhaps just refuse to go away. But unlike for actors and actresses under 60, for older actresses, feigning disability is not the short route to the podium. Having the grace to require some assistance but not being entirely dependent on care merits the Oscar for notable older actresses who win their first academy award for roles when they acquiesce to play, or even exaggerate, a character who is over 60. Examples include: Geraldine Page (aged 60) for Trip to Bountiful,43 after seven prior nominations; Jessica Tandy (aged 80) for Driving Miss Daisy,44 her second nomination; Helen Mirren (aged 61) for The Queen,45 after two prior nominations; and Judi Dench (aged 63) for Shakespeare in Love,46 her second of now seven nominations. These are all relatively demure parts: roles that feature women facing their aging with a determination to gain one final small victory, both modestly 82

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defying and yet accepting the changes that come with their age. The characters they play are portrayed as having their wits about them to the extent, even, that they outwit those around them, while still requiring their help. None appear to “lose” their physical or mental grip. Except Streep playing Thatcher, roles that demand a woman over 60 play a character with dementia do not receive the acclaim that more placid late-life roles nor more youthful disability fakery invite. Thus, though Moore is recognized for daring to play an Alzheimer’s patient at age 53, there is no award for Judi Dench at 67 playing a disheveled but endearing Iris Murdoch in Iris or Julie Christie at 66 for playing as elegant a nursing home resident imaginable in Away from Her. Instead, in those films, younger actresses are brought in to play the younger versions of their characters. Thus the seeming miracle cure offered by means of cripface performances, as described above, is unavailable to an actress playing her age. Judi Dench and Julie Christie may be able to demonstrate their cogent minds to their adoring publics, demonstrating that they are not the characters they played, but they can never again be as young as their counterparts, Kate Winslett and Stacey LaBerge, who play their characters in their youth. Nominee Moore lost out to Tilda Swinton for the 2011 EDA Award for the Actress Defying Age and Ageism. In her early sixties, Swinton’s most recent role was 84-year-old Madame D in The Grand Budapest Hotel.47 To play the part, she was “aged up” by prosthetic silicone rubber to simulate wrinkled flesh, complete with liver spots and lipstick applied “like an old lady,” as described by Katey Rich in Vanity Fair on February 13, 2015.48 Known for what Chelsea White describes in a Daily Mail article on October 18, 2013 as “age-defying looks,”49 Swinton received great acclaim for her bravery and for what critics consider a rare moment when she casts aside a usually androgynous appearance. While the role is titillating because it offers a rare glimpse at a sexualized older woman, the casting choice does much, perhaps, to defy age, but little to defy ageism. Instead, it functions as a type of granny drag akin to cripface. This role could have gone to a working actress over 80, such as Betty White, Ellen Burstyn, Shirley MacLaine, Angela Lansbury or Olympia Dukakis; alternately, Wes Anderson could have pursued his radical cinema by casting an actress in her seventies, such as Maggie Smith, Judi Dench or Jane Fonda. But the point in casting Tilda Swinton appears to have been to contrast her impressively youthful off-screen appearance with her faked extreme age. It is highly important that she is still androgynous, ever-youthful Tilda. Perhaps Swinton’s ability to remain youthful and androgynous while playing an octogenarian allows her to edge out Moore for the Defying Age Award, but defiance of age is no defiance of ageism. Further, though Moore, in Still Alice, plays a character close to her age, the portrayal of early-onset Alzheimer’s disease as an accelerated form of aging fits into a pattern of aging up. While increasingly but only slightly unkempt hair and somewhat sloppier clothes are the only real accouterments of disability or old age in the film, portraying Moore soaked in urine because she cannot find the bathroom in her own summer home has a similar effect to Swinton’s prosthetic make-up. So, although Moore lost out for the award for Defying Age and Ageism, we can assume that both actresses were nominated for their continued beauty and grace rather than for an anti-ageist perspective since neither brought that to the screen.

Still Julianne: Disability Experience and Still Alice While casting an actor with dementia in the title role would have risked another form of exploitation or of being considered that way, there are many ways that people with dementia could have been fully involved in the conceptualization of the film and Moore’s preparation for the role. As it was, to prepare for her award-winning performance of Alice, Moore conducted research into lived experiences of the character she was to play. According to an article by Bob Strauss in the Daily News on January 15, 2015, she reportedly interviewed three women who had been diagnosed with early-onset Alzheimer’s.50 And importantly, coverage emphasizes the 83

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relative youth of these patients (in their forties and fifties). As with Alice in the film, their youth enhances the tragedy of their decline since they are too young to be always already disabled, as old people are so often considered to be. Moore also went through the dementia diagnostic testing process herself, which is both impressive in what it reveals about her attention to detail and disturbing in terms of the resources expended that might have been used diagnosing someone experiencing memory loss. She also took the step of immersing herself in support groups and visited a care home. This all sounds like a promising reflection of Moore’s desire to get her depiction of a character with early-onset dementia right, except as Riley explains of mainstream disability cinema, it fits into a general pattern of playing up instead of representing disability: “The big star spends a few days, maybe a whole week, chatting up patients and doctors in addition to reviewing medical footage of tics and spasms, drooling and wobbling to be practiced before the mirror.”51 While this is akin to what Moore claims she did, in search of an authentic representation, as s. e. smith points out, “The goal [of ‘playing disability’] isn’t an authentic depiction of an incredibly rare disease, but to showcase an actor’s skills.”52 In addition to the interviews, Strauss claims that Moore also watched “every documentary film [she] could on Alzheimer’s” to gain perspective on the disease she was about to portray on screen.53 She doesn’t name the films, but it is safe to assume she would have found films such as Alive Inside,54 You’re Looking at Me Like I Live Here and I Don’t55 and The Forgetting.56 While not reliant on showcasing actors’ skills, these documentaries perpetuate many of the same worrying views on dementia as fictional exaggerations. The films tend to offer heavily edited views of tragic narratives of loss of self that emphasize the heroic people who help them, be they doctors, family members or volunteers. To pick one example, Alive Inside documents the process by which social worker Dan Cohen decides to obtain iPods for people with dementia who are transformed by the memories and emotions evoked by listening to music chosen for them. While the film shows some incredibly moving encounters between workers or family members or volunteers and people with dementia, it focuses its narrative on Cohen’s mission to circulate iPods and set up a program based on individual playlists. And the film implies that a valuable self lies dormant within a useless shell of a person with dementia, rather than that a self with dementia has its own inherent value. Thus, the film perpetuates the stereotypical damaging view of people with Alzheimer’s as the living dead. While, of course, any documentary production is a carefully crafted “creative treatment of actuality,”57 these productions present themselves as though they are full accounts of the experience of an illness. Collectively they create a normative perspective on how people should feel about and treat dementia.

Conclusion Admiring coverage of Moore’s attempts at authenticity usually also references the recent ALS diagnosis of the film’s co-writer and co-director, Richard Glatzer. The typical stories emphasize the almost uncanny difference between ALS and Alzheimer’s in dramatically ableist terms: “one ravages the body and spares the mind, the other largely does the opposite,” opines Cara Buckley in a New York Times article on November 26, 2014.58 But such stories also tend to draw on Glatzer’s illness as lending credibility to the film’s adaptation of a novel about Alzheimer’s. This lumping together of illnesses illuminates the troubling assumptions behind cinema’s investment in disability and aging. But it also raises important questions about authenticity in performance. On the one hand, it is offensive to assume that an experience of ALS would automatically result in the understanding of Alzheimer’s. On the other hand, the argument that disabled characters should be played by actors who understand and embody their realities lends some weight to the idea that a writer and director experiencing a recent surprising diagnosis with a degenerative illness might better understand what the character Alice is portrayed as experiencing. It is possible 84

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that Glatzer’s experiential perspective, though tangential, offered Still Alice the impetus it needed to offer a rare view of the perspective of the person with Alzheimer’s. While Moore’s performance hams up disability tropes and perpetuates the dementia plot, it does bring a refreshing vantage largely missing from other notable dementia films, such as Away from Her and Iris. This raises intriguing questions about how Judi Dench’s recent experiences with macular degeneration, to the extent that she now does not travel alone, might change how she played the title character of Iris, especially its portrayal of (inter)dependency. It also raises questions about whether cripface can be partially mitigated if a character with a disability is played by an actor with another disability. For Still Alice, the ability to consider at least part of the experience from the patient’s perspective is perhaps what makes the film so compelling, so moving and so convincing to many. That said, there is little evidence that Glatzer’s diagnosis adds insight to the ageism so common in dementia narratives, and especially in Still Alice. In an interview with Buckley, Glatzer’s husband, co-writer and co-director, Wash Westmoreland explains their ongoing efforts to keep Glatzer “as active as he can” be, and relating that to Still Alice saying, “This is what the film was about: a never-lay-down-and-give-in attitude.”59 This type of coverage of Glatzer, even of his sad death not long after Moore’s Oscar success, does more to perpetuate worrying supercrip models, wherein there is little room for a person to be discouraged by the coming of an illness that will utterly transform his or her bodymind. It fits with the active aging idea of growing old criticized within age studies because it is, like the supercrip, oppressively normative. Further, this mediation of Glatzer’s illness matches the general Hollywood script: a cripple must inspire or die. Disability scholars who challenge normativity and age studies scholars who articulate the damage caused by the pressures of active aging help us to understand the ways in which Moore is recalcitrantly “still Julianne,” a preternaturally active and youthful middle-aged woman. Following the lead of disability studies to situate aging as central to the human condition would transform our understanding of an experience such as Alice’s. Instead, the celebration of Julianne Moore’s performance of Alice, similar to the celebration of Redmayne’s performance of Stephen Hawking, does little to advance the politics of disability in Hollywood. While it appears at first blush to be a victory for older women, it is at best a tiny advance. Perhaps the role of Alice is more complex and meaningful than most available to an actress of Moore’s age, even of her caliber. But that is only next to a discouraging backdrop of vapid roles. And that complexity and meaning comes at the expense of a disability representation that could have challenged views of both aging and disability.

Notes 1 Still Alice, directed by Richard Glatzer and Wash Westmoreland (2014; Culver City, CA: Sony Pictures Classics, 2015), DVD. 2 Julianne Moore, “Onstage Speech Transcript: Actress in a Leading Role” (speech, February 22, 2015, Hollywood), www.oscars.org/press/onstage-speech-transcript-actress-leading-role. 3 “North America: United States—Life Expectancy at Birth,” last modified July 11, 2016, The World Factbook, Central Intelligence Agency, www.cia.gov/library/publications/the-world-factbook/geos/us.html. 4 Jay Dolmage, “Hollywood Mustn’t Shut Out Disabled,” The Record, March 13, 2015, www.therecord. com/opinion-story/5473748-hollywood-mustn-t-shut-out-disabled. 5 Leni Marshall, “Ageility Studies,” in Alive and Kicking at All Ages: Cultural Constructions of Health and Life Course Identity, ed. Ulla Kriebernegg, Roberta Maierhofer and Barbara Ratzenböck (Bielefeld, Germany: Verlag, 2014), 21–39. 6 The Bucket List, directed by Rob Reiner (2007; Burbank, CA: Warner Bros Pictures, 2008), DVD. 7 The Best Exotic Marigold Hotel, directed by John Madden (2011; Beverly Hills, CA: 20th Century Fox, 2012), DVD. 8 For more on the problem with the metaphor of the Silver or Grey Tsunami, see Andrea Charise. “‘Let the Reader Think of the Burden’: Old Age and the Crisis of Capacity,” Occasion: Interdisciplinary Studies in the

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9 10 11 12

13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39

40 41

Humanities 4, no. 31.5 (2012): 1–16, http://arcade.stanford.edu/sites/default/files/article_pdfs/OCCA SION_v04_Charise_053112_0.pdf. For more about the recent wave of cinema about older adults and the patterns within it, see Sally Chivers, The Silvering Screen: Old Age and Disability in Cinema (Toronto: University of Toronto Press, 2011). Peter Bradshaw, “Separation—Review,” Guardian, June 30, 2011, www.theguardian.com/film/2011/jun/ 30/a-separation-review. A Separation, directed by Asghar Farhadi (2011; Culver City, CA: Sony Pictures Classics, 2012), DVD. William Arnold, “Touching Notebook Overcomes Flaws to Satisfy Romance Fans in Need of a Good Cry,” Seatlle Post-Intelligencer, June 24, 2004, www.seattlepi.com/ae/movies/article/Touching-Notebook-over comes-flaws-to-satisfy-1147928.php. The Notebook, directed by Nick Cassavetes (2004; Burbank, CA: New Line Home Entertainment, 2005), DVD. A Song for Martin, directed by Bille August (2001; Century City, CA: First Look Studios, 2001), DVD. The Savages, directed by Tamara Jenkins (2007; Beverly Hills, CA: 20th Century Fox, 2008), DVD. Iris, directed by Richard Eyre (2001; Burbank, CA: Miramax Home Entertainment, 2002), DVD. Away from Her, directed by Sarah Polley (2006; Santa Monica, CA: Lionsgate, 2007), DVD. Still Mine, directed by Michael McGowan (2012; Beverly Hills, CA: 20th Century Fox Home Entertainment, 2014), DVD. Arrugas, directed by Ignacio Ferreras (2011; Barcelona: Cameo Media, 2012), DVD. Sally Chivers and Nicole Markotic, The Problem Body: Projecting Disability on Film (Columbus: Ohio State University Press, 2010), 5–8. Charles A. Riley II, Disability and the Media: Prescriptions for Change (Hanover and London: University Press of New England, 2005), 70. Martin Norden, The Cinema of Isolation: A History of Physical Disability in the Movies (New Brunswick, NJ: Rutgers University Press, 1994). Coming Home, directed by Hal Ashby (1978; Culver City, CA: MGM/UA Home Video, 2002), DVD. The Deer Hunter, directed by Michael Cimino (1979; Universal City, CA: Universal Home Video, 1997), DVD. Rain Man, directed by Barry Levinson (1988; Santa Monica, CA: MGM Home Entertainment, 2004), DVD. My Left Foot: The Story of Christy Brown, directed by Jim Sheridan (1989; New York: Miramax, 2005), DVD. Scent of a Woman, directed by Martin Brest (1992; Universal City, CA: Universal Home Video, 1998), DVD. The Piano, directed by Jane Campion (1993; Santa Monica, CA: Artisan Home Entertainment, 1999), DVD. Forrest Gump, directed by Robert Zemeckis (1994; Hollywood, CA: Paramount, 2001), DVD. Shine, directed by Scott Hicks (1996; New York: New Line Home Video, 1997), DVD. As Good as It Gets, directed by James L. Brooks (1997; Culver City, CA: Columbia TriStar Home Video, 1998), DVD. A Beautiful Mind, directed by Ron Howard (2001; Universal City, CA: Universal Studios Canada, 2002), DVD. Ray, directed by Taylor Hackford (2004; Universal City, CA: Universal, 2005), DVD. Million Dollar Baby, directed by Clint Eastwood (2004; Burbank, CA: Warner Home Video), DVD. The King’s Speech, directed by Tom Hooper (2010; Beverly Hills, CA: Anchor Bay Entertainment, 2011), DVD. The Iron Lady, directed by Phyllida Lloyd (2011; Beverly Hills, CA: Anchor Bay Entertainment, 2012), DVD. The Theory of Everything, directed by James March (2014; Universal Studios, CA: Universal Studios Home Entertainment, 2015), DVD. Dominick Evans, “#FilmDis Discusses: What Is Cripface and Why Is Discussing It Important,” accessed May 31, 2017, https://storify.com/dominickevans/filmdis-discusses-what-is-cripface-and-why-is-dis. Frances Ryan, “We Wouldn’t Accept Actors Blacking Up, So Why Applaud ‘Cripping Up’?” Guardian, January 13, 2015, www.theguardian.com/commentisfree/2015/jan/13/eddie-redmayne-golden-globe-ste phen-hawking-disabled-actors-characters. Oasis, directed by Lee Chang Dong (2002; Rome: Elleu Multimedia, 2009), DVD. Glee, Episode #9 “Wheels” first broadcast November 11, 2009 by Fox, directed by Paris Barclay and written by Ryan Murphy, TV.

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Still Julianne 42 s. e. smith, “Why Is Hollywood Still Stubbornly Casting Nondisabled Actors in Disabled Roles?” xoJane, February 4, 2015, www.xojane.com/issues/cake-still-alice-cripface-oscars. 43 The Trip to Bountiful, directed by Peterborough Masterson (1985; Santa Monica, CA: MGM Home Entertainment, 2005), DVD. 44 Driving Miss Daisy, directed by Alfred Uhry (1989; Burbank, CA: Warner Home Video, 2003), DVD. 45 The Queen, directed by Stephen Frears (2006; Burbank, CA: Miramax Home Entertainment, 2007), DVD. 46 Shakespeare in Love, directed by John Madden (1998; Burbank, CA: Miramax Home Entertainment, 1998), DVD. 47 The Grand Budapest Hotel, directed by Wes Anderson (2014; Beverly Hills, CA: 20th Century Fox, 2014), DVD. 48 Katey Rich, “How to Turn Tilda Swinton into an Old Lady, with Enough Liver Spots to Make Wes Anderson Happy,” Vanity Fair, February 13, 2015, www.vanityfair.com/hollywood/2015/02/grand-buda pest-hotel-makeup-oscar. 49 Chelsea White, “My, How You Have Aged! Tilda Swinton Is Unrecognisable After Getting Grey Hair and Wrinkles for Highly Anticipated The Grand Budapest Hotel,” Daily Mail, October 18, 2013, www.daily mail.co.uk/tvshowbiz/article-2465470/Tilda-Swinton-unrecognisable-gaining-40-years-highly-anticipatedThe-Grand-Budapest-Hotel.html. 50 Bob Strauss, “Julianne Moore Did Extensive Prep for Emotional Alzheimer’s Drama Still Alice,” Daily News, August 28, 2017, www.dailynews.com/2015/01/15/julianne-moore-did-extensive-prep-for-emo tional-alzheimers-drama-still-alice. 51 Riley, “Disability,” 70. 52 s. e. smith, “Why Is Hollywood Still Stubbornly Casting Nondisabled Actors in Disabled Roles?” Daily Dot, December 11, 2015, www.dailydot.com/via/still-alice-cake-oscars-nondisabled-actors. 53 Strauss, “Julianne Moore Did Extensive Prep.” 54 Alive Inside: A Story of Music and Memory, directed by Michael Rossato-Bennett (2014; Orange, CA: City Drive Films, 2014), DVD. 55 You’re Looking at Me like I Live Here and I Don’t, directed by Scott Kirschenbaum (2012; Molalla, OR: Peripheral Productions, 2012), DVD. 56 The Forgetting: A Portrait of Alzheimer’s, directed by Elizabeth Arledge (2004; Burbank, CA: PBS Home Video distributed by Warner Home Video, 2005), DVD. 57 John Grierson, “The Documentary Producer,” Cinema Quarterly 2, no. 1 (1932): 8. 58 Cara Buckley, “Yearning to Make the Connection,” New York Times, November, 26, 2014, www.nytimes. com/2014/11/30/movies/the-makers-of-still-alice-have-their-own-story-of-illness.html. 59 Buckley, “Yearning to Make the Connection.”

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8 AUTHENTIC DISABILITY REPRESENTATION ON US TELEVISION PAST AND PRESENT Beth Haller

Authentic representation of disability on US television has been occurring off and on since the 1970s, primarily as guest starring roles in series. Rightfully, concern in recent years has focused on the lack of disabled characters on television. The US LGBTQ organization GLAAD’s 2018 report found that, “The amount of regular primetime broadcast characters counted who have a disability has slightly increased [from 2017] to 2.1 percent, but that number still vastly under-represents the actualities of Americans with disabilities.”1 Clearly, this is important research, and multiple studies have confirmed it.2 However, this chapter focuses on the importance of actual disabled people appearing on television, not only their inclusion as characters often played by non-disabled actors. This chapter defines authenticity as a performer who openly discusses their physical, mental or cognitive disability, whether visible or invisible. This chapter argues that the exclusion of these authentic disabled performers is a social justice issue,3 and when a non-disabled actor performs disability, it is a form of aesthetic disqualification, as disability studies scholar Tobin Siebers theorized.4 Disabled arts blogger Scott Jordan-Harris explains that disabled people have “the same right to self-representation onscreen that we demand for members of other groups who struggle for social equality.”5 Viewers are outraged by the misrepresentation of race in TV and film, but “when we see disability being exploited onscreen, we are conditioned to applaud.” Although writing about art and photography primarily, Tobin Siebers argues that aesthetic disqualification is a political process that foments minority oppression. “Disqualification is produced by naturalizing inferiority as the justification for unequal treatment, violence and oppression,” he writes in Disability Aesthetics.6 The US entertainment industry’s ongoing failure to hire disabled performers, thereby perpetuating inauthentic representation, is a form of aesthetic disqualification and disability oppression, this chapter argues. Jordan-Harris explains the paradox from the many years of performances of non-disabled actors,7 many of whom garner prestigious awards for “playing disabled”8 (known as “cripping up”9 by disability activists). He writes: The insurmountable irony of the focus on whether able-bodied actors are “convincing” in disabled roles is that, if we were truly concerned with convincing performances, no able-bodied actor would ever have been cast as a disabled character. When a hearing actress is cast to play a deaf woman, the majority of her performance is devoted to 88

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asking herself a stream of questions about deaf life in an effort to pass as a deaf person. When Marlee Matlin is cast as a deaf woman, those questions do not need to be asked. No viewer needs to be convinced Marlee Matlin is deaf. Her performance is automatically authentic.10 Self-representation from disabled performers has been around since the early days of cinema when disabled circus performers starred in Tod Browning’s 1932 film Freaks. Film historian/ cartoonist Edward Ross writes that it is a “film that confronts images of disability head-on, featuring a cast of people with disabilities who worked as ‘sideshow freaks,’” and Freaks creates “the most complex depiction of disability ever committed to film.”11 Disability studies scholar Rachel Adams believes the film created a new framing of disability for audiences: “Rather than using the camera to further degrade the disabled actor, as some negative reviews suggested, Freaks proves that film may be instrumental in creating great tolerance to various kinds of difference.”12 The authentic disability representation that began in Freaks has finally found more solid footing on US television, as reality TV created an expectation of actual disabled people being hired. The turning point that resulted in more starring roles for disabled people in scripted television and reality TV came in 2006, when a reality show about little people drew significant audiences for the TLC cable channel.13 Little People, Big World (LPBW) documented the lives of Matt and Amy Roloff, a couple with dwarfism who live on a small farm in Oregon. They have four children, one of whom is also a dwarf. TLC called LPBW “the most comprehensive television documentary ever about the lives of little people.”14 Research about mass media audience members with disabilities in 2013 found that people with disabilities surveyed considered LPBW to be empowering.15 The show was not without its critics. The author of Little People: Learning to See the World Through My Daughter’s Eyes16 and the father of an LP daughter, voiced his concern: “Every little person is intimately familiar with the supremely unpleasant experience of being the subject of scrutiny. Little People, Big World lets viewers satisfy the need to stare: It’s voyeurism without the fear of being caught.”17 But even with problematic aspects in the TLC reality series, this chapter argues that shows like Little People, Big World and disabled actors in guest starring roles from the 1970s on ushered in the more prevalent current scripted and unscripted television series featuring disabled people as the stars. The disabled performers on these shows harken back to what Edward Ross explains was the power of Freaks: “The film seeks our identification and emotional engagement” with disabled people.18 In modern terms, these authentic performances on US television similarly influence audiences to have a better understanding of the disability community, because actual disabled people have visibility and power in this televised public sphere.

Research About the Impact of TV Stars with Disabilities In the 1980s, several scholars evaluated authentic disability representation on television when disabled actors appeared on television, looking at their impact on audiences. Blind actor Tom Sullivan guest starred on a number of TV shows from the 1970s through the 1990s, and researchers Tim Elliott and Keith Byrd studied the audience response to Sullivan’s non-stereotypical presentation of blindness in the hit show Mork and Mindy (1978–1982). In addition to viewing the episode, the researchers discussed misconceptions and stereotypes about blindness with participants. Elliott and Byrd found that the viewing and discussion of stereotypes created a non-threatening environment for participants, allowing them to shift their misconceptions and to accept accurate information about disability.19

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Research in the 1990s about the first TV show to feature an actor with Down syndrome in a starring role, Life Goes On (1989–1993), had similar findings. An experimental study in 1999 looked at both a documentary with an independent person with Down syndrome and the Corky character with Down syndrome from Life Goes On. The research participants saw active, socially engaged people with Down syndrome and that helped counter negative stereotypes of people with disabilities. Most importantly, the participants began to see people with Down syndrome as having equal status in society.20 This research illustrated several decades ago that media representations of disability have the power to change audience beliefs about disability. So why did authentic disability representation on TV gain a better foothold in the 2000s and beyond? This chapter argues that these authentic television representations allowed more information about disability issues to make it into the public sphere in several ways: TV production teams became more aware of disability rights issues because of better news coverage and put that knowledge into plotlines; disabled actors shifted from guest starring roles to principal character roles; and reality TV’s birth as a popular genre gave actual disabled people power and visibility within television.

Disability Issues in the News Influencing TV Content TV writers do not write in a vacuum. They may be writing for a hit 1970s show about a medical unit during the Korean war, M*A*S*H (1972–1983), but before they head off to the writers’ room at a TV studio in Los Angeles, they might see news stories in their morning newspaper about the 1977 disability rights protests at the San Francisco office of the US Department of Health, Education and Welfare.21 Decades of mass media research has confirmed how the news media put topics into the minds of readers, for example, agenda-setting theory.22 News media coverage of disability issues reminds everyone, including TV writers and showrunners, that people with disabilities exist. In addition, once disability is in the mix for a plotline, other personal connections to disability emerge. In the case of the TV show M*A*S*H, the blind actor Tom Sullivan appeared in an episode in 1976, the late actor William Christopher, who played Father Mulcahy, had an autistic son23 and actor Gary Burghoff, who played Radar, has a disabled left hand from birth.24 Newer dramas on American television openly base their plots on stories from the news and therefore some disability-related storylines emerge. Law & Order and its progeny, Law and Order: SVU, have both promoted the series with a tagline that says the shows are “ripped from the headlines.”25 Both shows have addressed disability storylines, but one of particular note was a Law and Order: SVU episode about the 2007 Ashley X case, in which the parents of a 6-year-old disabled girl had doctors stunt her growth so she would stay small.26 The January 22, 2008 episode, called “Inconceivable,” focused on the theft of frozen embryos from a fertility clinic. The detectives talk to everyone who had an embryo in the stolen tank, which leads them to parents who mirror the Ashley X case and case who had e who had embryos undergoing genetic testing. The scene involving genetic testing features the short-statured actor, Meredith Eaton.27 The Law & Order: SVU episode illustrated that the writers of that episode had understanding of the disability issues involved in the Ashley X case. The dialogue shows police detective Olivia Benson vocalizing the disability rights perspective in the Ashley X case and LP actor Eaton speaks for people with physical differences who select to have children who look like them.28 Clearly, the writers and production team for the show read US news media coverage of the Ashley X case, as well as making a commitment to authentic casting by hiring a guest star who is a little person. Authentic representations of the deaf community started to emerge on US television when the ABC Family show Switched at Birth began in 2011. It was the first US TV show to include multiple main characters who are deaf, played by previously unknown deaf actors, as well as 90

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established deaf actors such as Academy Award-winner Marlee Matlin.29 The show focused on two teenage girls and their families who find out their daughters were accidently switched in the hospital nursery on the day they were born. One of the girls is deaf: Daphne, played by Katie LeClerc, who does not identify as deaf but has Ménière’s disease that causes intermittent deafness.30 Issues of race and class emerge in the show as well. Daphne was raised in the working-class Latino community, and Bay, the other switched teen, has been raised in a wealthy white family.31 This show, too, clearly had a production team influenced by news about the deaf community when it featured an all-ASL episode in 2013 that focused on the closing of deaf schools in America and on the anniversary of the 1988 Deaf President Now protest, which closed Gallaudet, a university for deaf people in Washington, DC, until a deaf president was appointed.32 Switched at Birth creator Lizzy Weiss explained that it was actually the ABC Family network33 that “suggested making one of the kids disabled.”34 Weiss was familiar with American Sign Language because she had attended a “classical theatre of the deaf” course in college. She said, “I had in the back of my head a little bit of background at least about how beautiful the language was. So I said, ‘What if one of the girls is deaf?’” The network thought it was wonderful idea, so she began researching the deaf community, including spending time at a deaf high school in Los Angeles called Marlton, on which she modeled the Switched at Birth school, Carlton.35 Weiss says of the school visit experience: I learned so much that day and spoke to dozens of deaf teenagers about their lives and their experiences. And so, this is, of course, in the middle of writing the pilot, and I said to the network, you know, deaf kids wouldn’t voice orally. We would have to have those scenes only in ASL, and no sound and they said, “Great. Let’s do it.” And frankly, we just kind of grew and grew from there.36 To accommodate the narrative structure of a TV drama, Weiss said it became clear from the beginning that the show would need to use simcomm (simultaneous communication) for the hearing or deaf characters who were signing so they could speak and sign at the same time. She knew this wasn’t the norm for two actual people speaking in ASL, but the production team worried about having a show that was heavily captioned, which might lose the hearing teen audience who would have to pay attention to the screen to read during captioned scenes. However, the show became popular very fast—it was the highest-rated premiere ever on the ABC Family network with 3.3 million viewers.37 This gave the production team more freedom to be innovative so that by season three, the audience was so comfortable with captions, that the show featured less simcomm and more all-captioned scenes. The hearing writers for the show made a commitment to authenticity for the show by taking sign language classes and spending time at a deaf school. In addition, the production had both an ASL master and deaf consultant on set at all times. A kind of multicultural collaboration arose on the set as deaf performers who speak using sign and hearing writers who use verbal communication crafted stories that tried to respect multiple perspectives. Switched at Birth writer Joy Gregory gave the example of how a script note she received from deaf actor Sean Berdy, the Emmett character, educated her about a scene focused on his character’s speech therapy. At the beginning of the series, Emmett only speaks in sign language and never vocalizes, but after he falls in love with the hearing character, Bay, he becomes interested in trying to use his voice for her. Gregory said she wrote the episode about his speech therapy and wanted it to begin with an opening shot “of a close-up of his ear and of the hearing aid being put in.”38 Berdy emailed her saying, “I hope you understand this is very sensitive to the deaf community. Please don’t do this so close up.” The production’s deaf consultant told her, “It’s a symbol of oppression to some members of 91

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the deaf community, and it’s like you’re featuring it too much.” Gregory changed the scene and says she is thankful Berdy gave her that note.39 In the series, the complexities of deaf–hearing communication played out when the biological hearing family of the Daphne character does not make much of an effort to learn sign language. In that episode, Daphne confronts her biological family members about their reliance on her lipreading instead of really learning ASL. “I speak really well so sometimes hearing people forget or don’t really understand that I am [points to her ears and says] nothing. So I need you to speak slower, look at me when you talk and be patient,” Daphne says. Katherine, the mother, apologizes for the group.40 The writers for the show also said they tried to avoid presenting lipreading as a perfect communication method. “We don’t want it to be the deaf super power where you can just read lips from a mile away,” explained Switched at Birth writer Chad Fiveash.41 Fiveash said they even left lipreading problems in episodes to be more realistic. He gave an example from episode six, season three, where Daphne says, “I don’t think I caught that” about someone speaking to her. “I feel like it makes our show that much more real, while reminding people that it’s not a superpower, you really have to be facing this person. You really have to [have] respect,” Fiveash explained.42 Switched at Birth’s commitment to authenticity was clear throughout its run. Switched at Birth often added new characters, exploring multiple identities, wheelchair users and children with Down syndrome. In season three, a wheelchair-using character joined the show. The character, Campbell, was played by RJ Mitte, who is an actor with cerebral palsy (although he does not use a wheelchair in his off-screen life). A disability advocate in Wisconsin posted her joy about Switched at Birth focusing on the Daphne character getting an education about physical disabilities through the new character, when as someone disabled by an accident, he tells her he wants to walk again. She explains to him why she does not long to be hearing again: “Hearing people don’t often understand, but being deaf is part of who I am. I wouldn’t change it.”43 The disability advocate’s Facebook post explains the significance of this exchange on Switched at Birth: Thank you, Switched at Birth, for yet again understanding the nuances of identity for people with disabilities. And now for delving into cross-disability issues. … AMAZING, thoughtful discussion. Probably over simplifying the issue, but I was impressed that they tackled it at all since it’s TV. And to be clear, Campbell’s injuries seem to prevent him from participating in wheelchair sports. Oh how I love this show.44 The deaf community honored Switched at Birth for its authenticity. The National Association of Deaf (NAD) gave creator/showrunner Lizzy Weiss its Series Breakthrough Award in 2014, which is awarded to media creators and performers who “help increase awareness of the importance of authentic inclusion of the deaf and hard of hearing community.”45

Disabled Actors Shift from Guest Starring Roles to Principal Character Roles Disabled actors working in the 1970s, 1980s and 1990s who were able to get recurring roles or star as main characters on TV shows reinforced for producers that a disabled actor could carry a show. Deaf actor Linda Bove appeared on Sesame Street from 1972 to 2002,46 which is the longest recurring role in TV history for a deaf or disabled person. Actor Geri Jewell, an actor with cerebral palsy who was on Facts of Life from 1980 to 1984, became the first person with a disability to have a recurring role on primetime TV.47

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Most importantly, when Chris Burke starred in Life Goes On (1989–1993), he proved that an actor with Down syndrome could carry a prime-time television show. The show was a family drama focused on not just Chris Burke’s Corky character with Down syndrome, but on his two sisters and his parents. The starting plot of the series centered on the Corky character being mainstreamed at a regular high school where his younger sister attended. Life Goes On tried to make sure the show presented realism about Down syndrome beyond hiring an actor with the disability. The pilot was screened for high school students with Down syndrome who were being mainstreamed to get their feedback. The production had technical assistance from the Los Angeles Down Syndrome Parents Group. The National Down Syndrome Society embraced the show.48 The creator of the show, Michael Braverman, said they used actor Chris Burke to gauge what the Corky character could do in reality. “In terms of Corky, we ask, ‘Could Chris do this?’ and we’d translate that to Corky’s character,” Braverman said. Chris Burke is also the person who helped get the series onto television. Development executives from Warner Brothers saw a failed TV pilot starring Burke and asked Braverman to write a show for him. It became a family drama because Burke’s disability meant there was a limit to how many lines he could learn, so a family drama gave the show five main characters instead of one.49 The show’s music composer, Craig Safan, who had created the music for Cheers, actively sought the composer job for Life Goes On because his son has Down syndrome. He helped check the authenticity of the show from the production side. Mr. Safan believes that the series realistically portrays what it is like to have a child with Down syndrome. He recalled in 1989 how, just hours after the birth of his son six years ago, the doctor in the hospital advised him to institutionalize his child even before his wife learned that her infant had Down syndrome. A similar experience was recounted, in a flashback of Corky’s birth. “There’s still a great amount of misinformation from the medical community,” Mr. Safan says. The whole subject of Down’s and disability in children is something our generation did not know about. We did not believe it was in our future. Reality may be stretched on this series, but the question is, at the end of a show, do you feel something about a family having a disabled kid? Have you come to some emotional thing inside yourself about Down’s syndrome?50 The show’s authenticity using an actor with Down syndrome reportedly influenced a friend of one of the show’s writers to decide not to terminate her pregnancy after a diagnosis of Down syndrome because of the positive portrayal of a young man with Down syndrome on the show.51 This chapter argues that the authenticity from actors like Linda Bove, Geri Jewell and Chris Burke connects directly to the many disabled actors who became principal characters on US scripted TV shows from 2004 on. As mentioned, multiple deaf actors were cast in Switched at Birth (Sean Berdy, Ryan Lane, Marlee Matlin as main characters and other deaf actors as deaf school student characters52) and several actors with Down syndrome have become stars or recurring characters on shows such as Secret Life of the American Teenager (Luke Zimmerman played a main character’s brother 2008–2013), Glee (Lauren Potter played a mean cheerleader 2009–2015) and American Horror Story (Jamie Brewer was a main character in several seasons 2011–present). RJ Mitte, an actor with cerebral palsy, played the disabled son character in the critically acclaimed series Breaking Bad (2008–2013), which heightened the drama of the immoral main character Walter White. A longtime friendship with someone with cerebral palsy convinced Vince Gilligan, creator of Breaking Bad, to only cast a disabled actor in the son’s role.53 93

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Actor Micah Fowler, a wheelchair-using actor with cerebral palsy, broke into network television by starring as teenage JJ in the ABC prime-time comedy Speechless in 2016. The series is a comedy about life when a nonverbal disabled person is part of the family. Fowler, who is not nonverbal but uses a wheelchair, plays the oldest son who uses a laser pointer with a letter board with his attendant or a family member voicing his words. Speechless creator Scott Silveri grew up in this family; he has an older brother who is nonverbal and uses a wheelchair.54 Silveri made a commitment to authentic casting from the beginning. Speaking in 2016 Silveri explained: It was important to me that we cast someone with a disability because first of all; just for the reality of the show, we didn’t want to be faking it. And to do a show about inclusion and to get it wrong so fast … I didn’t want to mess it up in the most obvious way. Because the show has found a home on the network, I am hoping that experience will be replicated, because people are seeing that these stories are stories that can find an audience.55 Even as a person with a disabled family member, Silveri did not rely on his personal experience with disability, he hired consultant Eva Sweeney, a California woman with cerebral palsy who uses a laser pointer with a letter board and an attendant who voices for her. In fact, when Silveri met her, he scrapped the idea of the JJ character using a computer speech device. Silveri has said that adding the attendant character (played by the African American actor Cedric Yarbrough) allowed for storylines that are more diverse by having a non-family member introduce perspectives from outside the family.56 Silveri says Sweeney’s role as a consultant on the show has given it many disability specific plotlines. “It was really helpful asking Eva what kind of things she’d like to see on the show, but also what kinds of things she didn’t want to see,” Silveri says. “She was the one who turned me on to inspiration porn,” the concept of relegating a person with a disability into a source of inspiration simply by virtue of their existence. “This show brought that to the masses; I’d be lying if I said I was even aware of that a year ago.”57 Sweeney visited the Speechless writers’ room and answered questions about her life, especially in high school, and her communication method. She says the writers had good questions that indicated they could write an authentic disabled character. She also read many of the scripts for the first season and nixed ideas like having JJ learn to walk. In terms of disability, Sweeney said, “Don’t tell stories about him overcoming it; tell stories about him living with it.”58 In 2017, the show added even more authenticity checks by hiring disabled comedian and YouTube sensation Zach Anner, who has cerebral palsy and uses a wheelchair, as a writer on the show.59 Anner says he tries to make the disabled character an honest portrayal. Often, characters with disabilities are either inspiring or they are an object of pity to make other characters look better. And I feel like with what Speechless is doing, we’re finally getting characters with disabilities who are complicated, they’re funny, sometimes they can be jerks. And it’s just great to see finally characters with disabilities that have depth and nuance, because that’s been one of my biggest goals is to teach people that sometimes people with disabilities and cerebral palsy can be a-holes. And I feel like I’ve done a really good job of proving that to people.60 Speechless has the potential to lead to more disabled actors being hired in the next few decades, with less “cripping up” (a non-disabled actor playing disabled) on TV. As American disabled 94

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actor and comedian Maysoon Zayid has said about “cripping up,” “If a person in a wheelchair can’t play Beyoncé, Beyoncé can’t play a person in a wheelchair.”61 Zayid now has a development deal with the ABC broadcast network to turn her life story as a disabled Palestinian American into a sitcom called Can Can.62 Speechless promotes inclusion on many levels as Lawrence Carter-Long, formerly of the US National Council on Disability, says, “Speechless matters because inclusivity on TV promotes inclusivity in life.”63 In addition, it is not just physical disabilities that are being represented by disabled actors on current US television. Many actors are more open about their mental health diagnoses, learning disabilities or chronic illnesses and one show in particular has woven that into the innovative musical comedy series, Crazy Ex-Girlfriend (2015–present). Creator/star Rachel Bloom has talked about her anxiety and depression diagnosis and how she brings those life experiences into the show.64 People with mental health diagnoses, as well as the psychologist community have praised the show. Another of Crazy Ex-Girlfriend’s major strengths comes through: compassion. “The majority of shows and movies that deal with themes of mental illness usually portray the mentally ill person as an antagonist; a ‘psycho’ that deserves to be locked up, punished, or even killed for their erratic, dangerous behavior,” psychologist Carmen Harra, Ph.D., tells SELF. But the first two seasons are spent building up compassion for Rebecca as a complex character with some very obvious “quirks.”65 The character authenticity shines through when actors who know how someone with an invisible or physical disability exists in the world play the role.

Disabled People and the Birth of Reality TV Finally, although complaints about reality TV abound, these shows put actual people with disabilities into the public sphere, where they are in front of the cameras to show audiences their lives. In addition, when their shows became hits, disabled people were given jobs as producers so they had more control of the reality shows that featured them. One of the first versions of the modern American reality show, The Real World on MTV in 1992, featured an actual person with an HIV/AIDS diagnosis, Pedro Zamora. President Bill Clinton credited Zamora with helping lessen the fear people had of those with HIV/AIDS. President Clinton, noting that one in four new HIV infections is among people under 20, said in a statement from the White House: “Pedro was particularly instrumental in reaching out to his own generation, where AIDS is striking hard. Through his work with MTV, he taught young people that ‘the real world’ includes AIDS and that each of us has the responsibility to protect ourselves and our loved ones.”66 From the beginning, many reality TV shows included people with invisible disabilities or physical differences. The Amazing Race (2001–present), for example, has featured people on the autism spectrum,67 little people, deaf people and an amputee.68 As mentioned, Little People, Big World (LPBW) began on the TLC network in 2006 and chronicled the lives of the Roloff family in Oregon; Amy Roloff said in 2010 that when they were approached about doing the show, they saw it as a good way to educate the public about dwarfism. “Nothing had depicted dwarfism in an everyday way,” she said.69 LPBW ushered in a number of other reality shows about little people. The success of the show led to more than just reality shows about little people. LPBW’s producer also created Push Girls 95

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for the Sundance channel, a 2012–2013 reality show about four Los Angeles women who are wheelchair users.70 These reality shows had good ratings and proved to TV executives that TV audiences are interested in lives of people with disabilities, whether they have a connection to disability or not. These reality shows are the ancestor of the hugely successful, Emmy-Award winning reality show Born This Way on A&E (2015–present), which features adults with Down syndrome gaining independence and navigating friendships, employment and romantic relationships. During its first season, it increased its ratings by 85 percent, which was the highest rating increase in A&E’s history.71 Born This Way executive producer Jonathan Murray said in 2016 that television is no longer a vast wasteland but a place for enlightenment for audiences on many aspects of life, including disabled people’s lives. “For too long, people with disabilities, including Down syndrome, have been placed on the sidelines of life and the margins of primetime.”72 Murray, who helped create reality TV in America and was a producer on MTV’s The Real World, says Born This Way is more real and authentic than others, and the production team could not use the typical reality show “tricks” to create drama. Murray told Deadline in 2016: We sort of knew we had something very genuine and very authentic … had to go back to that and trusting the emotion of the scene and that the emotional connection viewers would have with the seven adults would carry through to commercial, and that’s very different.73 The focus of the show is on what adults with Down syndrome can do, not what they cannot do. Viewers with Down syndrome reported that Born This Way’s cast seem like people who could be their friends. However, the show has been critiqued in a way that echoed the criticism of Life Goes On—that the people with Down syndrome featured are quite articulate, independent and talented, whereas in real life, some people with Down syndrome are nonverbal and may need a caregiver or other support throughout their lives.74 However, based on producer Jon Murray’s comments, it still appears that Born This Way may be one of the most authentic reality shows on television. The adults with Down syndrome are just living their lives in front of the camera. Their stories give visibility to Down syndrome in the public sphere, thereby giving audiences insight into these adults’ experiences that will demolish incorrect information about people with intellectual disabilities.

Conclusion This chapter illustrates the ways authentic disability representation advanced into the public sphere of US television through better news coverage of disability rights and subsequent TV plotlines, through disabled actors gaining visibility in principal character roles, through the personal connections producers, directors and writers began to have with people with disabilities that informed their creative decisions and through reality TV giving actual disabled people production power within that genre. Authentic disability representation pushes back against the aesthetic disqualification that Tobin Siebers theorizes produces oppression of disabled people in the arts. Authentic representation taking a more prominent place on television is an affront to the false belief that “disability is a personal misfortune or tragedy that puts people at risk of a nonquality existence.”75 With disabled performers presenting their lived experiences as part of television narratives, audiences can begin to understand disability discrimination as a social justice issue, in which discriminatory attitudes and societal barriers cause problems for disabled people rather than their impairments. 96

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British arts blogger Scott Jordan-Harris confirms that authentic disability representation is a rights issue, and he worries when non-disabled actors take their jobs, disabled performers might be blocked from employment in the entertainment industry completely. He writes: Indeed, if we are okay with disabled roles being played by able-bodied actors, we are okay with disabled actors being prevented from acting at all. Able-bodied actors can play able-bodied roles. Disabled actors cannot. If disabled actors cannot play disabled roles, they cannot play any roles at all—and they are excluded from film altogether.76 Authentic disability representations on US television have implications globally now that many more of its programs are available worldwide with subscription video-on-demand services (SVOD) like Netflix.77 In addition, the United States and the United Kingdom export the most television series (factual, fiction and entertainment) programming internationally.78 Data shows that even in this era of original streaming content, streaming viewers are watching series that previously appeared on broadcast TV 80 percent of the time.79 “The leading SVOD services rely heavily on licensed series such as This Is Us, The Blacklist and South Park. Current broadcast series along with classics such as Seinfeld and Breaking Bad drive engagement, retain viewers and entice new subscribers,” according to a 2018 study from 7Park Data. Interestingly, Breaking Bad, which featured disabled actor RJ Mitte, is considered classic TV in the 7Data report.80 US television writer Allen Rucker, who is a wheelchair user, has big hopes for streaming TV programs to provide more authentic disability-related content because technology now allows America’s disabled directors, actors and writers to create their own content that they can put online themselves. Rucker observes: For the first 50 years of its existence, TV was akin to a monastic order, rigidly controlled by network and studio clerics. Now it’s much more like the very earliest days of Hollywood—if you have a good idea, a little talent, a cool camera, endless perseverance and a boatload of chutzpah, you can take a shot. And if you have a disability, I just named a half-dozen venues where you can get your wheels wet. Or, along with the rest of America, you can just sit back and watch a whole new world of disability TV materialize on your video device of choice.81 In 2018 he listed off streaming shows that hired disabled actors like YouTube Red’s Step Up: High Water, which has an amputee dancer on the show, Eric Graise; One Day at a Time on Netflix with a recurring character played by wheelchair user Santina Muha; and The Close on the Sundance channel with deaf showrunners/stars Shoshannah Stern and Josh Feldman.82 Existing television series franchises are populating their casts with more disabled or deaf actors as well. AMC’s Fear The Walking Dead added wheelchair-using actor Daryl “Chill” Mitchell in August 2018,83 and deaf theater actor Lauren Ridloff joined The Walking Dead’s ninth season in November 2018.84 Disability representations on television and film are not always perfect, but casting disabled actors and hiring disabled writers, consultants and production team members can help guide these productions into a more authentic space. The US news media is also beginning to better understand the issue of the entertainment industry hiring disabled performers, as evidenced by the controversy in July 2018 of Dwayne “The Rock” Johnson playing an amputee in the film Skyscraper. The Washington Post covered the topic thoroughly, citing an open letter written by a double amputee actor Katy Sullivan, who asked Johnson never to play a disabled person again.85 While also discussing film actor Scarlett Johannson stepping away from playing a transgender man, Sullivan summed up the true importance of authentic disability representation: 97

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The outcry is about inclusion. TRUE inclusion. This is also the truth for performers with disabilities being sidelined so that able-bodied actors can “play at” what it’s like to live life with a disability. What we lose in that is the genuine, authentic perspective.86

Notes 1 GLAAD, “Where We Are on TV 2018–2019,” October 25, 2018, http://glaad.org/files/WWAT/ WWAT_GLAAD_2018-2019.pdf. 2 Danny Woodburn and Kristina Kopić, The Ruderman White Paper on Employment of Actors with Disabilities in Television (Ruderman Family Foundation, July 2016), www.rudermanfoundation.org/wp-content/uploads/ 2016/07/TV-White-Paper_final.final_.pdf; GLAAD has included an assessment of disabled characters since 2012. 3 Scott Jordan-Harris, “Able-Bodied Actors and Disability Drag: Why Disabled Roles Are Only for Disabled Performers,” RogerEbert.com, March 7, 2014, www.rogerebert.com/balder-and-dash/disabled-roles-dis abled-performers. 4 Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press, 2010). 5 Jordan-Harris, “Able-Bodied Actors and Disability Drag.” 6 Siebers, Disability Aesthetics, 24. 7 Jordan-Harris, “Able-Bodied Actors and Disability Drag.” 8 Justin Wm. Moyer, “Welcome, Eddie Redmayne: Since ‘Rain Man,’ Majority of Best Actor Oscar Winners Played Sick or Disabled,” Washington Post, February 23, 2015, www.washingtonpost.com/news/morn ing-mix/wp/2015/02/23/since-rain-man-majority-of-best-actor-winners-played-sick-or-disabled/? utm_term=.8aa64d3b2dbc. 9 Sara Novic, “When It Comes to Depicting Disability, Hollywood Keeps ‘Cripping Up,’” CNN, May 25, 2018, www.cnn.com/2018/03/01/opinions/hollywood-disability-new-normal-opinion-novic/index.html. 10 Jordan-Harris, “Able-Bodied Actors and Disability Drag.” 11 Edward Ross, Filmish: A Graphic Journey Through Film (London: SelfMadeHero, 2015), 44–48. 12 Rachel Adams, Sideshow USA: Freaks and the American Cultural Imagination (Chicago: University of Chicago Press, 2001), 68. 13 Anthony Crupi, “TLC Gives Little People 2nd Run,” Mediaweek, April 24, 2006. 14 Felecia R. Lee, “Documenting a Family That Comes in Two Sizes,” New York Times, March 2, 2006, E1. 15 Beth Haller and Lingling Zhang, “Stigma or Empowerment? What Do Disabled People Say About Their Representation in News and Entertainment Media?” Review of Disability Studies 9, no. 4 (2014). 16 Dan Kennedy, Little People: Learning to See the World Through My Daughter’s Eyes (Emmaus, PA: Rodale, 2003). 17 Dan Kennedy, “Will Little People, Big World Change Our Perception of Dwarfs?” Slate, March 4, 2006, www.slate.com/id/2138626/. 18 Ross, Filmish, p. 47. 19 Tim R. Elliott and E. Keith Byrd, “Video Depictions of Blindness and Attitudes Toward Disability,” Journal of Rehabilitation 50, no. 1 (1984): 49–52, 71. 20 Heather Hall and Patricia Minnes, “Attitudes Toward Persons with Down Syndrome: The Impact of Television,” Journal of Developmental and Physical Disabilities 11, no. 1 (1999): 61–76. 21 Andrew Grim, “Sitting-In for Disability Rights: The Section 504 Protests of the 1970s,” Smithsonian O Say Can You See? Blog, July 8, 2015, http://americanhistory.si.edu/blog/sitting-disability-rights-sec tion-504-protests-1970s. 22 Everett M. Rogers, James W. Dearing and Dorine Bregman, “The Anatomy of Agenda Setting Research,” Journal of Communication 43, no. 2 (1993): 68–84. 23 Doris Bacon, “M*A*S*H’s William Christopher and Wife Barbara Find Love and Pain with an Autistic Son,” People Weekly, November 13, 1989, https://people.com/archive/mashs-william-christopher-andwife-barbara-find-love-and-pain-with-an-autistic-son-vol-32-no-20/. 24 Wikipedia, “Gary Burghoff,” accessed June 14, 2018, https://en.wikipedia.org/wiki/Gary_Burghoff. 25 Abby Rogers, “15 True Stories That Inspired Your Favorite Law & Order Episodes,” Business Insider, March 21, 2012, www.businessinsider.com/real-crimes-that-inspired-law-and-order-episodes-2012–3. 26 Elizabeth Cohen, “Disability Community Decries ‘Ashley Treatment,’” CNN, January 12, 2007, www. cnn.com/2007/HEALTH/01/11/ashley.outcry.

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Disability Representation on US Television 27 Beth Haller, “Law & Order: SVU Tackles Ashley X Case/Genetic Testing,” Media dis&dat blog, January 31, 2008, https://media-dis-n-dat.blogspot.com/2008/01/law-order-svu-tackles-ashley-x.html. 28 Haller, “Law & Order.” 29 Jace Lacob, “‘Switched at Birth’: ABC Family’s Groundbreaking Deaf/Hearing Drama,” Daily Beast, February 14, 2012, www.thedailybeast.com/articles/2012/02/14/switched-at-birth-abc-family-s-groundbreak ing-deaf-hearing-drama.html. 30 Robin Hilmantel, “Why Katie Leclerc Says Her Intermittent Hearing Loss Is a ‘Huge Blessing,’” Women’s Health Magazine, February 3, 2014, www.womenshealthmag.com/health/menieres-disease. 31 ABC Family, “Switched at Birth: About the Show,” abcfamily.go.com, accessed September 12, 2011, http://abcfamily.go.com/shows/switched-at-birth/about-the-show. 32 Beth Haller, “Switched at Birth: A Game Changer for All Audiences,” M/C Journal 20, no. 3 (2017), http://journal.media-culture.org.au/index.php/mcjournal/article/view/1266. 33 The ABC Family network was renamed Freeform in January 2016. 34 Academy of Television Arts & Sciences, “Talking Diversity: ABC Family’s Switched at Birth,” Webcast, February 2012, www.emmys.com/content/webcast-talking-diversity-abc-familys-switched-birth. 35 Academy of Television Arts & Sciences, “Talking Diversity.” 36 Academy of Television Arts & Sciences, “Talking Diversity.” 37 Chuck Barney, “‘Switched at Birth’ Another Winner for ABC Family,” Mercury News, June 28, 2011, www.mercurynews.com/tv/ci_18369762. 38 Joy Gregory, interview with writer, January 17, 2014. 39 Joy Gregory, interview. 40 Lizzy Weiss, “American Gothic,” Switched at Birth, June 13, 2011, television episode. 41 Chad Fiveash, interview with writer, January 17, 2014. 42 Chad Fiveash, interview. 43 Katie Ramos, “Disability Thank You Notes,” Facebook page, May 1, 2014, [closed group – citation permission granted June 12, 2014 through Facebook direct message], www.facebook.com/groups/ 400402133364010. 44 Ramos, “Disability Thank You Notes.” 45 National Association of the Deaf, “First NAD Breakthrough Awards Gala,” NAD, March 9, 2014, http:// nad.org/news/2014/3/first-nad-breakthrough-awards-gala. 46 Muppet Wiki, Linda, accessed June 12, 2018, http://muppet.wikia.com/wiki/Linda. 47 Barbara Fletcher, “How ‘The Facts of Life Broke One of TV’s Most Taboo Topics,” OZY, May 30, 2014, www.ozy.com/performance/how-the-facts-of-life-broke-one-of-tvs-most-taboo-topics/31418. 48 Joy Horowitz, “‘Life Goes On’ Stretches Reality, Within Reason,” New York Times, October 22, 1989, www.nytimes.com/1989/10/22/arts/television-life-goes-on-stretches-reality-within-reason.html. 49 Horowitz, “Life Goes On.” 50 Horowitz, “Life Goes On.” 51 Horowitz, “Life Goes On.” 52 Switched at Birth Wiki, “Deaf Actors,” accessed December 1, 2018, http://switchedatbirth.wikia.com/ wiki/Category:Deaf. 53 Josh Gajewski, “For Once, His Disability Was an Advantage,” Los Angeles Times, March 2, 2008, http:// articles.latimes.com/2008/mar/02/entertainment/ca-mitte2. 54 Lisa Rosen, “Less Is More: Speechless fulfills a Special Need By Showing People with Disabilities as People,” Written By (April/May, 2017). 55 Beth Haller, “Lights! Camera! Access! 2.0 Works to Move Young Disabled People Toward Media Careers,” Media dis&dat blog, December 19, 2016, http://media-dis-n-dat.blogspot.com/2016/12/lightscamera-access-20-works-to-move.html. 56 Rosen, “Less Is More,” 28–29. 57 Rosen, “Less Is More,” 28. 58 Rosen, “Less Is More,” 30. 59 Monica Bushman, “‘Speechless’ Writer Zach Anner: People with Disabilities Can Be Anything, Even Jerks,” The Frame, September 26, 2017, www.scpr.org/programs/the-frame/2017/09/26/59353/speechlesswriter-zach-anner-says-people-with-disa. 60 Bushman, “Speechless.” 61 Novic, “When It Comes to Depicting Disability.” 62 Cara Buckley, “Don’t Feel Bad, She Likes New Jersey,” New York Times, October 30, 2018, C1, C6. 63 Lawrence Carter-Long, “How ABC’s Speechless Is Changing Attitudes About Disability,” Upworthy, October 3, 2016, www.upworthy.com/how-abcs-speechless-is-changing-attitudes-about-disability.

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Beth Haller 64 Emily Mahaney, “How Crazy Ex-Girlfriend’s Rachel Bloom Survived the Worst Depression of Her Life,” Glamour, October 19, 2016, www.glamour.com/story/how-crazy-ex-girlfriend-rachel-bloom-surviveddepression. 65 Claire Gillespie, “‘Crazy Ex-Girlfriend’ Succeeds in Portraying Mental Illness Where So Many Other TV Shows Have Failed,” SELF, February 15, 2018, www.self.com/story/crazy-ex-girlfriend-portrayingmental-illness. 66 Mireya Navarro, “Life of 22 Years Ends, But Not Before Many Heard Message on AIDS,” New York Times, November 12, 1994, www.nytimes.com/1994/11/12/us/life-of-22-years-ends-but-not-beforemany-heard-message-on-aids.html. 67 Michelle Diament, “Asperger’s Debuts on The Amazing Race,” Disability Scoop, September 21, 2009, www.disabilityscoop.com/2009/09/21/the-amazing-race/5453. 68 The Amazing Race Wiki, “Disabled Teams,” 2016, accessed June 12, 2018, http://amazingrace.wikia. com/wiki/Category:Disabled_teams. 69 Chet Cooper, “The Big World of Amy Roloff,” Ability Magazine (April/May 2010), www.abilitymagazine. com/amy-roloff.html. 70 Megan Angelo, “They Are Pretty, Normal, and in Wheelchairs,” New York Times, June 1, 2012, www. nytimes.com/2012/06/03/arts/television/push-girls-on-sundance-looks-at-disabled-women.html. 71 Lisa de Moraes, “Born This Way Celebrates Emmy Win with Third-Season Pickup from A&E,” Deadline, September 26, 2016, http://deadline.com/2016/09/born-this-way-celebrates-emmy-win-third-seasonpickup-1201819392. 72 De Moraes, “Born This Way.” 73 De Moraes, “Born This Way.” 74 Victoria Vila, “Down Syndrome on TV: Conversations About ‘Born This Way,’” Thoroughly Modern Messy blog, January 12, 2016, https://modernmessy.wordpress.com/2016/01/12/born-this-way. 75 Siebers, Disability Aesthetics, 25. 76 Jordan-Harris, “Able-Bodied Actors and Disability Drag.” 77 Harsh Chauhan, “Netflix Is Getting Serious About the Massive Opportunity,” Motley Fool, December 5, 2018, www.fool.com/investing/2018/12/05/netflix-getting-serious-about-massive-opportunity.aspx. 78 Based on new television series (factual, fiction and entertainment) launched in 2017 in the 48 territories studied for NoTa, which monitors new programmes on TV and online platforms. The United Kingdom and the United States were the leading exporters, with over 500 programmes each. Mediametrie, “One Television Year in the World: Between Safe Bets and Innovative Content Trends, TV Has Kept Its Appeal and Is Taking Advantage of New Uses,” Eurodata Worldwide, April 9, 2018, www.mediametrie.com/euro datatv/communiques/one-television-year-in-the-world-between-safe-bets-and-innovative-content-trendstv-has-kept-its-appeal-and-is-taking-advantage-of-new-usages.php?id=1854. 79 7Park Data, “Licensed Content in the Streaming Age,” April 2018, http://info.7parkdata.com/whitepaper? utm_referrer=https%3A%2F%2Fblog.7parkdata.com%2Fdownload-media-white-paper%2F. 80 Arya Roshanian, “‘Breaking Bad’ Actor RJ Mitte: We Need More Disabled People Working in TV,” Variety, August 25, 2016, https://variety.com/2016/tv/news/breaking-bad-rj-mitte-disabled-actors-tv-televi sion-1201844774. 81 Allen Rucker, “Disability Media: The Coming Sea Change,” New Mobility, May 1, 2018, www.newmobi lity.com/2018/05/disability-media-the-coming-sea-change. 82 Rucker, “Disability Media.” 83 Daryl “Chill” Mitchell, “Talking Dead (Fear) Daryl ‘Chill’ Mitchell (Wendell) on His Character Using a Wheelchair,” August 27, 2018, YouTube video, www.youtube.com/watch?v=jdTf4Cgvpmw. 84 Dino-Ray Ramos, “‘The Walking Dead’ Sets Lauren Ridloff as Show’s First Deaf Character,” Deadline, July 16, 2018, https://deadline.com/2018/07/the-walking-dead-lauren-ridloff-deaf-amc-1202427452. 85 Travis M. Andrews, “How Scarlett Johansson and Dwayne Johnson Represent Hollywood’s Uneven Strides Toward Inclusivity,” Washington Post, July 22, 2018, www.washingtonpost.com/lifestyle/style/howscarlett-johansson-and-dwayne-johnson-represent-hollywoods-uneven-strides-toward-inclusivity/2018/07/ 22/22b56658-8dd8-11e8-bcd5-9d911c784c38_story.html?utm_term=.866b9027bcaf. 86 Katy Sullivan, “Paralympian Actress Katy Sullivan Chides Dwayne Johnson For Playing Amputee in ‘Skyscraper,’” Deadline, July 16, 2018, https://deadline.com/2018/07/paralympian-chides-dwayne-johnsonamputee-skyscraper-casting-katy-sullivan-disabilities-1202427187.

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9 THE SPECTACULARIZATION OF DISABILITY SPORT Brazilian and Australian Newspaper Photographs of 2012 London Paralympic Athletes Tatiane Hilgemberg, Katie Ellis and Madison Magladry

Introduction Media coverage of sport has undergone a process of “spectacularization” over the last 20 years. This is true also of the Paralympic Games, one of the largest international disability sporting and media events. We define spectacularization as the process by which sport is not just a game to be played by individuals or groups, but something to be sold to spectators. This process has therefore seen the adoption of a more visual language in the media. Newspaper photographs offer a particularly compelling example of this. Beth Haller argues newspaper photographs of people with disability are significant because people with disability are an oppressed group subject to limited media representations.1 She posits that studying print photographs offer a way to “understand the media’s role in constructing disability as different.”2 Newspaper photographs offer valuable information, especially in the sport section as a way to attract and appeal to readers. As Haller explains, they are the hook that draws the audience into a story.3 As a result of this spectacularization, the Paralympics have become an important media event in recent years. The Paralympic Games have been the subject of numerous research works in the field of sport and disability studies. Most scholarly work has been preoccupied with politics of representation or with locating gaps in coverage of the athletes and their achievements, especially when compared to the mainstream ubiquity of Olympic coverage. More recently, as the amount of coverage increases, this field of scholarship has expanded to include intersectional analysis of how gender and nationality affect representation in the Paralympics.4 This chapter aims to contribute to this discussion, with a particular focus on the continued use of newspaper analysis as a prominent methodology among these studies. To return to Haller, newspaper photographs have been recognized as more progressive than other media representations of disability.5 The chapter aims to situate Australian and Brazilian newspaper coverage of the 2012 London Paralympics among existing analysis of the Games (2012 and earlier), emphasizing how the coverage constructs and addresses an audience of disability sport. The aim of this research is to analyze how these images of disabled athletes are portrayed in the media —the quantity of photographs depicted, their representation of gender, common photographic angles employed and the visibility and type of disability depicted. 101

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Prior Research: A Story of Disparity Research that examines how disability is represented in media coverage of the Paralympics can be roughly drawn into three themes—the disparity regarding the “correct” portrayal of visible and invisible disabilities; a lack of coverage or a disparity between the coverage of the Paralympics as a disabled sporting arena and the Olympics or other able-bodied sporting events; and how the variety of the coverage depends on other issues such as gender or nationality. These three themes share a common thread—they all address the idea of what constitutes “empowerment” or “progressiveness” among people with a disability, specifically in terms of media portrayal. There was noted to be a marked difference in the way athletes with visible disabilities and those with invisible disabilities were portrayed. In an analysis of British newspaper coverage of the 2000 Sydney Paralympic Games, Nigel Thomas and Andrew Smith found that in cases of athletes with visible disabilities—for example having an amputation or being in a wheelchair— the image was cropped or the impairment was otherwise obscured from view.6 When combined with medicalized descriptions of disability and a tendency to compare an athlete with a disability to an able-bodied athlete, these images were seen as reinforcing a societal preoccupation with able-bodiedness and “appeared to deny the featured athlete’s identity as a person with a disability.”7 Christoph Bertling and Thomas Schierl concur with these findings, stating that “pictures are very rarely used in newspaper coverage of the Paralympics.”8 They found that when pictures were included, they often obscured the impairment and interpreted this as an attempt to emulate the aesthetic value and “entertainment” of able-bodied sports media. Indeed, they found that journalists in general “expressed a certain aversion towards pictures emphasising disability.”9 Danielle Peers, herself a former Paralympian, offers some insight as to why this is the case. For Peers, the visibility of disability “acts as a kind of caveat, lowering expectations of the athlete’s abilities and recentering their disability-based (as opposed to athlete-based) identities,”10 and argues that this framework contributes to “the construction and affirmation of Paralympians as passive, disabled and marginal.”11 The difference in coverage of disabled versus able-bodied sport was also a common theme in the literature. For example, Thomas and Smith analyzed images and articles of Paralympians from the 2000 Games and located these images in relation to how Olympians were portrayed. Their analysis suggested that representation of Paralympians tended to compare them to able-bodied athletes, often concealing physical impairments in photographs. Although this may be construed as an effort to de-emphasize disability, Thomas and Smith argued that this kind of representation reinforced the naturalized link between able-bodiedness and athletic ability.12 Peers’ research also considered the difference in coverage between Paralympians and able-bodied Olympians, via a textual analysis of two texts concerned with the larger historical context of the Paralympics. She concluded this context often overemphasizes the roles of volunteers and other able-bodied organizers.13 Emphasis on able-bodiedness in coverage of the Paralympics suggests that (in)visibility of an impairment is not inherently “empowering” nor progressive (nor disempowering nor stereotypical, conversely) but must be situated within a broader context of how the athlete, the Games and disability are constructed and understood. Indeed, both themes—visibility and disparity with able-bodied sports—reflect Karen DePauw’s perspective of sport as a site of cultural resistance and that marginality in sport should be viewed as “socially constructed,” “a dynamic process” and “in the context of power relations and resistance rather than assimilation.”14 Minimal coverage of the Paralympics compared to other able-bodied sports—particularly prior to the 2012 London games—is similarly complex in the context of acceptance of disability in sport media. Anne Golden found that American journalists who covered the Olympics perceived a lack of audience interest for the Paralympics, as well as logistical issues and a perception of the Paralympics as lesser to the Olympics.15 Toni Bruce addresses a similar preconception that

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disability sport is viewed “in similar terms to women’s sport: as different, secondary and lesser.”16 It could therefore be argued that an increase in the amount of news articles that discuss the Paralympics might assist with changing this perception. However, P. David Howe proposes that the type of coverage that the Paralympic Games receives remains relatively static because it is tightly controlled by the International Paralympic Committee, “perpetuating the myth that Paralympic sport is of greater purity” through charitable, patronizing modes of portrayal.17 Howe argues that the underlying contexts of the Games are obscured from media representation in favor of celebratory, disability-focused rhetoric about the Games and the athletes. More recent work concerning the Paralympics and disability sport examines the relationship between representation of disability alongside nationality and gender. DePauw’s model of marginality in sport addresses sexuality, masculinity and able-bodiedness, noting that the likelihood of being marginalized in the media increases when the subject occupies more than one of these positions.18 As an example, Thomas and Smith identify a “double impairment” in women with disabilities, where what little coverage Paralympian athletes are given is dominated by the male athletes, rendering the female athletes less visible.19 Nationality also becomes a factor in the marginalization or stereotyping of Paralympic athletes. In a study comparing the coverage of a nation’s own Paralympic athletes with those of other countries, Bruce found that the closer that the athletes are perceived to being like “us,” the more likely they are to receive in-depth coverage marked by nuance and complexity … the closer to “them,” the more likely they are to receive limited attention that narrowly stereotypes or exoticizes them within dominant discourses related to perceived differences.20 Returning to the common thread throughout the literature assessing how media portrayal can empower or disempower, with the decreasing degrees of visibility and representation of Paralympic athletes outlined above, we ask what does this mean for the status of non-athletes with disabilities, everyday people with disabilities? David E. J. Purdue and P. David Howe question the idea that the Paralympics can “give” empowerment at all to people with disabilities who are not participants in elite sport.21 That is, if even elite Paralympic athletes struggle to gain acknowledgment beyond a restrictive set of stereotypes, what does this mean for those unable to participate? In their study, which featured interviews with Paralympic athletes and other stakeholders, Purdue and Howe ultimately found that “only those directly involved in Paralympic sport, the athletes, have the ability to use the Paralympic Games for their own empowerment.”22 This is due in part to the way the athletes are constructed as “supercrips”—“what they [non-athletes with disabilities] should be able to achieve, if only they tried hard enough.”23 This type of rhetoric may alienate those with disabilities who do not have access to the platform of elite sport and may therefore reinforce stereotypes about living with disability while giving the impression that the Paralympics represent the pinnacle of empowerment. In summary, based on the literature reviewed, the Paralympics offers a culturally significant representation of disability. Yet the media tends to consistently represent Paralympians and, by extension, disabled people, in two ways—as “more able” (for example by obscuring impairment), or as a tragic inspiration in contrast to an able-bodied mindset (the supercrip). Further, other issues in addition to disability—such as gender or nationality—have also been seen to reflect greatly on how the media represents Paralympians. Returning to the focus of this chapter, the coverage of the 2012 Paralympic Games in Brazilian and Australian newspapers, we predicted that representations of Paralympians during the 2012 Games would remain constant with those of previous years despite a more commercial focus; however, we discovered this drive to attract an audience for future Paralympic Games resulted in a different type of representation. 103

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Method A content analysis of the representation of the 2012 London Paralympic Games by four Brazilian and four Australian newspapers with wide circulation was conducted. The sample included articles published throughout the duration of the Games (August 28—September 10, 2012), including the day before the opening ceremony and the day after the closing ceremony. The Brazilian sample was conducted from four Brazilian broadsheet daily newspapers—O Globo, Folha de S. Paulo, Estado de Minas and Zero Hora. The Australian sample included the Australian, West Australian, Courier Mail and Sydney Morning Herald. Editorials, letters and opinion articles were not included; we analyzed only news, interviews and photos that reflected the newspapers’ institutional values rather than the opinion of an individual. In addition, only those articles that focused on Paralympic athletes were analyzed. Our coding methodology followed several steps. First, each photo was identified with a number. From the photographs, we identified the portrayed athletes with their name and gender. We analyzed the photographic angles used according to the following categories: “whole body,” “waist up,” “knee up,” “close” (face only) and “detail” (when the focus is on a detail of the image or a specific part of the athlete’s body). The visibility of the disability was coded as either “visible” (not concealed due to the angle of the photograph and identifiable), “invisible” (which includes images of athletes where an otherwise visible disability is concealed due to the angle of the photograph, and also invisible disabilities such as intellectual disabilities) or “both,” where multiple athletes are pictured. Type of disability was coded in the case of visible disability.

Results Brazil In the four Brazilian newspapers analyzed we found 106 articles and 86 photographs that met the inclusion criteria. Only 28 of these articles did not include photos, meaning 78 (73.6 percent) of the articles contained at least one image of a Paralympian (Figure 9.1).

50 45 40 35 30

Number of articles

25 20

Number of articles with

15

pictures

10 5 0 Folha de S. Paulo

O Globo

Zero Hora

Estado de Minas

Figure 9.1 Breakdown of number of articles by newspaper (Brazil).

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We also found a difference in the amount of coverage between male and female athletes. The male athletes were portrayed in 75 (87.2 percent) of the photographs, while females were represented in 11 (12.8 percent). It could simplistically be argued that women won fewer medals than men and were therefore represented less; however, statistics show that female athletes were responsible for 25 percent of all Brazilian medals. We also analyzed how the athletes’ bodies were framed and concluded that more than 40 percent of photographs presented the entire body and in more than 60 percent the disability was visible. The representation of both male and female athletes follows this pattern. In other words in 72.7 percent of photographs that portrayed women the disability was visible, and the same occurred in 62.7 percent of the images that represented men. This data was further broken down into photographic angle used (Figure 9.2). These findings contrast with those of Schantz and Gilbert, who reported that French and German newspapers’ coverage of the 1996 Games tended to frame athletes from the waist up—44 percent of the images framed the athletes from the waist up or just their faces—and hide their disabilities.24 We also noted that the most commonly portrayed disabilities were the physical ones—mostly amputees, wheelchair users and visually impaired athletes (Table 9.1).

Australia Collectively, our sample set from the four Australian newspapers analyzed consisted of 103 articles and 123 photographs. Of the 103 articles, 26 articles did not feature a photograph of an athlete, meaning that 77 (74.7 percent) of the articles did feature at least one photograph (Figure 9.3). These statistics are notably similar to those of our Brazilian results, with the exception of the much higher number of photographs (123 in the Australian sample compared to 86 in the Brazilian sample), due mostly to the large number of photographs present in the Courier Mail. The difference in representation between male and female athletes was pronounced, but the gap was not as significant as found in the Brazilian results. The 123 photographs showed 135 athletes: 90 (66.6 percent) were male and 45 (33.3 percent) were female.

100%

80%

60%

Male Female

40%

Total

20%

0% Whole body

Waist up

Knee up

Close

Detail

Figure 9.2 Proportion of photographs by photographic angle and athletes’ gender (Brazilian newspapers).

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Table 9.1 Type of visible disability portrayed (Brazilian newspapers) Type

Quantity

Percentage

Amputee

36

63.2

Visual disability

15

26.3

6

10.5

Wheelchair

The disparity between visible and invisible disabilities was less significant than that observed in the Brazilian results, with 48.5 percent of images displaying a visible disability and 51.5 percent not showing a disability. This relative evenness is reflected in the male athletes, but the photographs of female athletes present a larger gap, with 30.6 percent of images showing a visible disability and 69.4 percent not showing a disability. Further analysis of the way the athletes were framed found prevalence in the representation of the whole body, accounting for 49 percent of the total images of athletes. However, this trend was not consistent between men and women. Photographs of women presented the athlete waist up in 36 percent of photographs, compared to men who were featured waist up in 17 percent of the images (Figure 9.4). There were two prominent types of visible disability portrayed in the Australian newspapers— amputees and wheelchair users (Table 9.2). Pictures of amputees constituted 70.5 percent of photos of athletes with visible disabilities; visual impairment accounted for 2 percent; wheelchair users for 23.5 percent, and crutch or leg brace users were represented at 4 percent. This is different to the Brazilian results where the main two types were amputees and visually impaired athletes. This may be in part because of the success of Brazilian Paralympians Daniel Dias, who is an amputee, and Terezinha Guilhermina, an athlete with a visual impairment. Our observation of wheelchair users was also higher than those exhibited in the Brazilian results. This could be because of a high number of images of Kurt Fearnley, a successful Australian wheelchair racer, as well as a number of images of wheelchair rugby and basketball teams.

40 35 30 25 Number of articles

20 15

Number of articles with

10

pictures

5 0 Australian

West Australian

Courier Mail

Sydney Morning Herald

Figure 9.3 Breakdown of number of articles by newspaper (Australia).

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The Spectacularization of Disability Sport 100%

80%

60%

Male Female

40%

Total

20%

0% Whole Body

Waist Up

Knee Up

Close

Detail

Figure 9.4 Proportion of photographs by photographic angle and athletes’ gender (Australian newspapers).

Discussion There are many aspects to consider when analyzing this data. The four main themes outlined above are considered here in detail—gender representation, the ways in which photographs are commonly framed (photographic angle used), the visibility of disability and the type of disability most commonly depicted in sport by the media. As Beth Haller observed, despite there being limited studies addressing the significance of news photography of people with disabilities, images have “unspoken cognitive implications,”25 whereby people with disabilities can be cast “as passive and dependent, as an equal, or as a superhero.”26 Sport is considered to be a powerful institution that reproduces the patriarchal order and reinforces masculinity.27 In the last 30 years, studies from all over the world have compared media coverage of male and female athletes in international competitions in sports newspapers and in the sports pages of daily newspapers. These studies conclude that news and photographs portraying female athletes and sports were fewer in number and quality than their male counterparts.28 For example, in a study of articles published in the United States, the United Kingdom, Canada and Australia between 1984 and 2000, Crossman, Vincent and Speed found that professional female tennis players were portrayed in one-third of photographs compared with the coverage dedicated to their male peers.29 They also found that women involved in feminized

Table 9.2 Type of visible disability portrayed (Australian newspapers) Type

Quantity

Amputee

36

Percentage 70.6

Crutches or leg brace

2

3.9

Visual disability

1

2.0

12

23.5

Wheelchair

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sports, such as gymnastics, swimming and skating, received more media attention than those athletes that were engaged in masculinized sports such as soccer, basketball, softball or hockey. Press coverage of the Olympics also points to the prevalent male focus coverage. Pereira, Pontes and Ribeiro30 analyzed the photographic coverage of the 2012 Olympic Games in two Brazilian newspapers, and concluded that 68 percent portrayed men and 32 percent women. Crossman et al. analyzed journal articles that discussed this issue, published in the United States, United Kingdom, Canada and Australia between 1984 and 2000, finding that female athletes were portrayed in one-third of the photographs, compared with the coverage dedicated to male athletes. Continuing this gender-bias argument, yet focusing on how photographs of athletes are commonly depicted in newspaper imagery, while the entire body of athletes without disability are typically framed, several authors claim that images of female athletes with disability are closely framed, depicting only the athlete’s face and obscuring her impaired body. Duncan and Sayaovong denote a sexual prudence dimension to this, as areas such as genital areas, hips, breasts and legs are excluded.31 Previous studies have also discovered a tendency in the media to de-eroticize athletes with disabilities’ bodies.32 This difference in the portrayal of Paralympic athletes along gender lines and in the way these photographs are framed was also apparent in our study of the literature. We hypothesize that a reason for this could be that the newspapers wanted to focus more on sporting performance rather than on body image. It could further be argued that this positive coverage could indicate a desire to overcome common criticisms about sexualizing or erotizing the female sporting body; however, we also have to take into account that people with disability are generally portrayed as asexual beings,33 which could be a more realistic approach to explaining our results. Nevertheless, our study revealed that only 9 percent of the photographs in Brazilian newspapers and around 20 percent in Australian newspapers framed just the athlete’s face, which is in contrast to these previous studies. In further analyzing the difference between genders from a framing perspective, Lee found that in more than half of the photographs covering the 2012 Paralympic Games—images sourced from five international newspapers—the whole body of the male athletes was presented (54.9 percent), yet this number dropped to around a third (38.5 percent) when women were the focus.34 Both our Brazilian and Australian data on the same Games reflect this pattern—depiction of the athlete’s whole body was apparent in around half of the photographs portraying males, yet in around a third of the images portraying females. Considering the issue of how visible an athlete’s disability is in the media, a study conducted by Schantz and Gilbert about the French and German newspaper coverage of the 1996 Games showed that the press tend to hide Paralympic athletes’ disabilities.35 Buysse and Borcherding, who analyzed 12 newspapers from five countries during the 2008 Beijing Paralympic Games, reached the same conclusion—the athlete’s disability was invisible in 61 percent of the cases.36 Athanasios Pappous, Anne Marcellini and Eric de Léséleuc. analyzed the photographic coverage of the 2000 Sydney to the 2008 Beijing Games in five European countries—their data outlines that in Sydney the majority of the published photographs (82 percent) indicated that the athlete had a disability,37 whereas by Beijing this number had dropped to 42 percent. Bertling found similar results in the German press, claiming that the majority of photographs tended to hide athletes’ disabilities through shadow techniques or similar artifices.38 Lee’s study, which analyzed the 2012 Paralympic Games’ coverage in five countries, showed that there was a slightly increased tendency to show the athlete’s disability (50.5 percent visible).39 The same results were found by Ayvazoglu who analyzed the Turkish sports newspaper Fanatik.40 In our study the disability was visible and identifiable in the majority, 64 percent, of the Brazilian photographs. However, the same results were not found in Australia, where disability was invisible in 51 percent of the photographs. The interrelationship between cultural values and the spectacularization of sport could explain our results. First, cultural values influence the way that 108

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body and disability are seen by society and portrayed by the media. Different cultures give different meanings to the body, for example a scar can be seen as a deformity by some Western cultures, whereas it is a symbol of maturity to the Papua New Guinea Kaningara tribe.41 Second, it can be argued that as sport becomes increasingly merchandized, marketing is increasing and the need to “sell” the Games is growing—this is in spite of the perceived difficulties of marketing the image of a disabled athlete, an image that goes against the usual ideal athletic body conveyed by the media. Brazil was the host of the 2016 Paralympic Games, therefore it was important during the 2012 Games for Brazilian newspapers to raise awareness about the Paralympic Games and athletes more extensively in preparation for their upcoming (marketing) event. This is part of the process of spectacularization, in which the media consolidates the sport as a product to be sold. With regards to the type of visible disability portrayed, our study showed that the newspapers depicted amputees more often than other visible disabilities (63.2 percent in Brazil and 70.5 percent in Australia), followed by athletes with visual impairment (26.3 percent in Brazil and 2 percent in Australia), athletes in a wheelchair (10.5 percent in Brazil and 23.5 percent in Australia) and athletes with crutches or a leg brace (2 percent in Australia). This list of visible disabilities is also reflected in the literature—in Shell and Duncan’s study, 40 percent of the athletes portrayed on CBS during the 1996 Games coverage were in wheelchairs, 32 percent were amputees and 20 percent had a visual impairment.42 While not in the same sporting arena, yet still valid, when Haller analyzed 12 major American newspapers and magazines between 1990 and 1993, she came to the conclusion that more than 50 percent of the 171 published photographs portrayed people in wheelchairs.43 Hardin and Hardin call this type of ranking by disability constructed by the media the “disability hierarchy,” where men in wheelchairs are in the top because they are the closest to an “ideal” athlete with disability.44 DePauw agrees, arguing that this happens because the wheelchair can be seen as a substitute to the lower limbs, while the athlete’s upper body offers an “acceptable” and “apparently normal” physique.45 Schantz and Gilbert also concur, and suggest that the visual image of this particular group is so strong that it allows the subject to be labelled as having a disability without exposing the audience to anything “confronting.”46 Another complementary study was conducted by Raab and Janda who analyzed the portrayal of the 2008 Beijing Paralympic Games by German public television.47 They found that athletes in wheelchairs were portrayed in 18 percent of the analyzed material, followed by amputees and visually impaired athletes. They also claim that athletes in wheelchairs or amputees are, in general, the most common in the media as they do not cause so much aversion despite their visible disability. Considering all of these factors, our data suggested that there were more similarities than differences in the 2012 Paralympic Games photograph coverage between the two countries. There were several limitations of the study. First, the analysis focused on photographic images and did not conduct an in-depth analysis of the written content of the articles. Such analysis of the interrelationship between image and article text will yield more comprehensive results regarding the social and cultural construction of disabled athletes in the media and is an important area of future research. Second, our study focused on newspapers. Although this helped to show changing patterns of representation and continued this prominent methodology focus of prior disability media studies, other forms of media are proving significant in changing the image of disability sport. For example, the roles of television and social media have been recognized as vital to the spectacularization of the Paralympics and future research could broaden the scope to include digital media, fandom and celebrity.

Conclusion This chapter reports findings of a content analysis of photographs of Paralympic athletes appearing in popular Australian and Brazilian newspapers during the 2012 Paralympic Games. 109

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The research focused on how these images of disabled athletes were portrayed in the media— the amount of photographs depicted, their representation of gender, the ways in which images were commonly framed (the photographic angle used), the visibility of disability and the type of disability shown. In general, both the Brazilian and Australian media published a large number of photographs; this was in opposition to findings in other studies, which claimed that there is iconography poverty regarding Paralympic Games coverage.48 Regarding gender representation, the newspapers from both countries focused more on male than female athletes; the Brazilian press had a slightly more masculine coverage than the Australian press. With regards to the way in which the photographs were framed, our results show that almost half of the images we analyzed from both countries represented the athlete’s whole body, or at least from their waist up. As outlined above, this data does not corroborate prior research. This is a significant finding. Often the media will be seen to attempt to “neutralize” the disabled body, making it either “disappear” or appear as non-disabled as possible in case they make audiences feel uncomfortable. This is particularly the case with disabled athletes. Bertling and Schierl, explaining the lack of images associated with Paralympic athletes in newspaper coverage, write that “pictures attract attention; they demand emotional involvement”49 and reiterate that audiences do not want to have such involvement with disability. This, alongside commercial media’s long-standing argument that the Paralympics’ complicated ranking system has alienated audiences,50 has resulted in Paralympic athletes not receiving the same level of media coverage as their Olympic counterparts. There was a marked difference between the coverage from the two countries with regards to the visibility of disability. In Brazil, in the majority of photographs presented during the period of the Games, the disability was visible and identifiable, an unusual outcome in a media that usually demands the depiction of perfect bodies. Indeed, this finding is in opposition to the majority of research about media representation of Paralympic sports and, in some sense, to the data from Australia in which 51 percent of the photographs did not display athletes’ disabilities. The type of disability shown also varied slightly between the countries. In Brazil the most visible disability in the photographs were amputees, followed by visually impaired athletes and athletes in wheelchair. In Australia the data showed that amputees, athletes in wheelchairs, followed visually impaired athletes and those with crutches or leg brace were the more frequently displayed disabilities. Returning to our theme of spectacularization, we noted that this seemed to have an impact on how the media in the respective countries approached the coverage of the 2012 Games. The 2016 Paralympic Games were to be held in Brazil and there was therefore a greater incentive for the Brazilian media to prepare their domestic audience for this significant sporting event—the more progressive representations could be seen to be part of a spectacularization in preparation for this. Increasing audience identification with any group turns the unfamiliar (disability) into the familiar51 and, in this case sell tickets to the Paralympic Games. Australian newspapers did not have the same commercial interests—their home-grown Paralympics were over long ago. However, the concept of spectacularized and merchandized sport for people with disabilities is still in its infancy, and disabled sports continues to be marginalized. Indeed, previous studies of newspaper representations of Paralympians have emphasized that such marginalization—alongside traditional negative and stereotypical portrayals of this group, including the common discourse of tragedy and/or inspiration while at the same time obscuring images of impairments—has also had consequences for a broader representation of disability. As the conventions of Paralympic coverage becomes more aligned with journalistic norms, it is important to produce updated accounts of how newspapers position their audiences to understand both the Games and disability in general. 110

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Notes 1 Beth Haller, “Camera Angle and Media Representations of People with Disabilities” (paper presented to the Media and Disability Interest Group, Association for Education in Journalism and Mass Communication Annual Meeting, Washington, DC, August 1995), 2. 2 Haller, “Camera Angle and Media Representations,” 2. 3 Haller, “Camera Angle and Media Representations,” 1. 4 Nigel Thomas and Andrew Smith, “Preoccupied with Able-Bodiedness? An Analysis of the British Media Coverage of the 2000 Paralympics Games,” Adapted Physical Activity Quarterly 20 (2003): 166–181; Toni Bruce, “Us and Them: The Influence of Discourses of Nationalism on Media Coverage of the Paralympics,” Disability & Society 29, no. 9 (2014): 1446–1459. 5 Haller, “Camera Angle and Media Representations,” 15. 6 Thomas and Smith, “Preoccupied with Able-Bodiedness?” 166. 7 Thomas and Smith, “Preoccupied with Able-Bodiedness?” 173. 8 Christoph Bertling and Thomas Schierl, “Disabled Sport and Its Relation to Contemporary Cultures of Presence and Aesthetics,” Sport in History 28, no. 1 (2008): 43. 9 Bertling and Schierl, “Disabled Sport and Its Relation to Contemporary Cultures,” 47. 10 Danielle Peers, “(Dis)Empowering Paralympic Histories: Absent Athletes and Disabling Discourses,” Disability & Society 24, no. 5 (2009): 655. 11 Peers, “(Dis)Empowering Paralympic Histories,” 654. 12 Thomas and Smith, “Preoccupied with Able-Bodiedness?” 13 Peers, “(Dis)Empowering Paralympic Histories,” 653–665. 14 Karen DePauw, “The (In)Visibility of Disability: Cultural Contexts and ‘Sporting Bodies,’” Quest 49, no. 4 (1997): 421. 15 Anne Golden, “An Analysis of the Dissimilar Coverage of the 2002 Olympics and Paralympics: Frenzied Pack Journalism Versus the Empty Press Room,” Disability Studies Quarterly 23, no. 3/4 (2003), www.dsq-sds.org/ article/view/437/614. 16 Bruce, “Us and Them,” 1446. 17 P. David Howe, “From Inside the Newsroom: Paralympic Media and the ‘Production’ of Elite Disability,” International Review for the Sociology of Sport 43, no. 2 (2008): 136. 18 DePauw, “The (In)Visibility of Disability,” 416–430. 19 Thomas and Smith, “Preoccupied with Able-Bodiedness?” 169. 20 Bruce, “Us and Them,” 1455. 21 David E. J. Purdue and P. David Howe, “Empower, Inspire, Achieve: (Dis)Empowerment and the Paralympic Games,” Disability & Society 27, no. 7 (2012): 903–916. 22 Purdue and Howe, “Empower, Inspire, Achieve,” 915. 23 Ronald Berger, “Disability and the Dedicated Wheelchair Athlete: Beyond the ‘Supercrip’ Critique,” Journal of Contemporary Ethnography 37, no. 6 (2008): 648. 24 Otto J. Schantz and Keith Gilbert, “An Ideal Misconstrued: Newspaper Coverage of the Atlanta Paralympic Games in France and Germany,” Sociology of Sport Journal 18 (2001): 82. 25 Haller, “Camera Angle and Media Representations.” 26 Haller, “Camera Angle and Media Representations,” 2. 27 Susan Tyler Eastman and Andrew C. Billings, “Sportscasting and Sports Reporting: The Power of Gender Bias,” Journal of Sports and Social Issues 24, no. 2 (2000): 192–213; Jennifer Hargreaves, Sporting Females: Critical Issues in the History and Sociology of Women’s Sports (London: Routledge, 1994). 28 Jo Ann M. Buysse and Bria Borcherding, “Framing Gender and Disability: A Cross-Cultural Analysis of Photographs from the 2008 Paralympic Games,” International Journal of Sports Communication 3 (2010): 308–321; Jane Crossman, Jon Vincent and Harriet Speed, “The Times They Are a-Changin: Gender Comparisons in Three National Newspapers of the 2004 Wimbledon Championships,” International Review for the Sociology of Sport 42, no. 1 (2007): 27–41; Margaret C. Duncan and Amoun Sayaovong, “Photographic Images and Gender in Sports Illustrated for Kids,” Play and Culture 3 (1990): 91–116; Thomas Horky and Jörg-Uwe Nieland, International Sports Press Survey 2011: Quantity and Quality of Sports Reporting (Norderstedt: BOD, 2013). 29 Crossman, Vincent and Speed, “The Times They Are A-Changin.” 30 Erik Giuseppe Barbosa Pereira, Vanessa Silva Pontes and Carlos Henrique de Vasconcellos Ribeiro, “Jogos Olímpicos de Londres 2012: Brasileiros e Brasileiras em foco” [Olympic Games London 2012: male and female Brazilian in focus], Revista de Educação Física/UEM 25, no. 2 (2014): 257–271. 31 Duncan and Sayaovong, “Photographic Images and Gender in Sports Illustrated for Kids.”

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Tatiane Hilgemberg et al. 32 R. C. Lachal, “La Représentation Des Personnes Handicapées Dans Les Médias: De L’Objet Au Sujet” [The representation of people with disability in the media: from object to subject], Revue Prévenir 39 (2000): 97–105; Schantz and Gilbert, “An Ideal Misconstrued.” 33 Tom Shakespeare, Kath Gillespie-Sells and Dominic Davies, The Sexual Politics of Disability (London: Cassel, 1996); Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York and London: New York University Press, 2006). 34 Myung Lee, “Images of Athletes with Disabilities: An Analysis of Photographs from the 2012 Paralympic Games” (PhD diss., Alabama University, Alabama, ProQuest Dissertations Publishing, 2013), 68. 35 Schantz and Gilbert, “An Ideal Misconstrued.” 36 Buysse and Borcherding, “Framing Gender and Disability.” 37 Athanasios (Sakis) Pappous, Anne Marcellini and Eric de Léséleuc, “Contested Issues in Research on the Media Coverage of Female Paralympic Athletes,” Sport in Society: Cultures, Commerce, Media, Politics 14, no. 9 (2011): 1182–1191. 38 Christoph Bertling, “Disability Sports in the German Media,” in Heroes or Zeroes? The Media’s Perceptions of Paralympic Sport, ed. Otto J. Schantz and Keith Gilbert (Champaign, IL: Commonground, 2012), 55–64. 39 Lee, “Images of Athletes with Disabilities,” 74. 40 Nalan R. Ayvazoglu, “Gender Parity in Media Coverage of Athletes with Disabilities in Turkey,” Journal of International Women’s Studies 16, no. 3 (2015): 220–236. 41 Sally French and John Swain, “Whose Tragedy? Towards a Personal Non-Tragedy View of Disability,” in Disabling Barriers: Enabling Environments, 2nd ed., ed. John Swain, Sally French, Colin Barnes and Carol Thomas (London: Sage, 2004), 34–40. 42 Lea Ann “Beez” Shell and Margaret C. Duncan, “Content Analysis of CBS’s Coverage of the 1996 Paralympic Games,” Adapted Physical Activity Quarterly 16 (1999): 27–47. 43 Beth Haller, “If They Limp, They Lead? News Representations and the Hierarchy of Disability Images,” in Handbook of Communication and People with Disabilities: Research and Application ed. Dawn O. Braithwaite and Teresa L. Thompson (Mahwah, NJ: Routledge, 2000), 273–287. 44 Brent Hardin and Marie Hardin, “Conformity and Conflict: Wheelchair Athletes Discuss Sport Media,” Adapted Physical Activity Quarterly 20, no. 3 (2003): 246–259. 45 DePauw, “The (In)Visibility of Disability.” 46 Schantz and Gilbert, “An Ideal Misconstrued.” 47 N. Raab and S. Janda, “Coverage of the Beijing Paralympic Games on German Television,” in Heroes or Zeroes? The Media’s Perceptions of Paralympic Sport, ed. Otto J. Schantz and Keith Gilbert (Champaign, IL: Commonground, 2012), 85–94. 48 Schantz and Gilbert, “An Ideal Misconstrued”; Eric Léséleuc, “A Way Forward: Researching International Perspectives on Media and the Paralympics,” in Heroes or Zeroes? The Media’s Perceptions of Paralympic Sport, ed. Otto J. Schantz and Keith Gilbert (Champaign, IL: Commonground, 2012). 49 Bertling and Schierl, “Disabled Sport and Its Relation to Contemporary Cultures,” 39–50. 50 Katie Ellis, Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance (New York: Routledge, 2016), 119–138. 51 Serge Moscovici, Representações Sociais: investigações em psicologia [Social representations: explorations in social psychology], trans. Pedrinho A. Guareschi (Petrópolis, Rio de Janeiro: Vozes, 2011).

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10 GEORGE R. R. MARTIN AND THE TWO DWARFS Mia Harrison

Introduction In 2011, George R. R. Martin’s television series Game of Thrones was released to wide critical acclaim. The TV program and the literary series it is based upon (called A Song of Ice and Fire) have regularly been praised as notable examples of disability representation in pop culture—a significant acknowledgment considering how frequently the subject of disability is misrepresented or entirely absent in popular media. When characters with disabilities do find their way onto the page or screen, they are regularly portrayed as something to fear, laugh at or pity.1 Disability in media is overwhelmingly defined by society’s negative perception of it, and when allowed to present this perception unchallenged, writers (intentionally or otherwise) encourage audiences to maintain these harmful values. It is important to investigate prevailing depictions of disability in pop culture in order to separate nuanced and constructive (or deconstructive) disability representation from the plethora of stereotypes audiences are regularly faced with. Critical disability studies allows audiences to understand textual representations of disability by critiquing the cultural construct of the ideal body. Crucial to critical disability studies is the sociopolitical analysis of disability. The social model of disability recognizes that society caters to a particular type of body and famously makes a distinction between what is considered an impairment of the mind or body, and the social barriers erected by a society that deems impairments to be undesirable.2 Thus, disability should not be thought of as an inherent state, but rather the product of a society that fails to accommodate bodies that do not meet an assumed level of normativity.3 Though the social model encourages important critical enquiry into the validity of “impairment” as an inherent state, Mitchell and Snyder posit a cultural analysis of disability that may be more useful when investigating the role of fictional media in both presenting extant cultural values, and establishing structures for future social paradigms. The cultural model of disability recognizes the relationship between “disability” as a product of discrimination and the environmental and cultural obstacles that people with disabilities necessarily face.4 Characters with disabilities rarely occupy a significant role in literature and media, and when critics study these characters, they often interpret them metaphorically, failing to account for the political discourses that guide these representations.5 The cultural model critiques narrative efforts to portray the problem of social disablement while still exploring the experience of living with a disability. An example of this can be seen in the riding saddle designed by Martin’s Tyrion Lannister, a protagonist with

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dwarfism, and how it empowers a boy who is emasculated after losing his ability to ride with a regular saddle. Stories such as this recognize the practical difficulty of physical disability, while situating it within the wider social problems of ableism and patriarchy. Narratives that fail to recognize such a relationship often present characters who occupy a generic Otherness, without the nuance of personality or personal history.6 Imaginative fiction in particular has the unique ability to explore sociopolitical issues in ways that disrupt hegemonic narratives without presenting an obvious threat to audiences’ ideologies. The fantasy genre can be defined by its use of magical or supernatural devices, characters and worlds, and its ability to present the “real world in disguise” encourages audiences to imaginatively engage with narratives in order to understand the social structures and rules textually presented, using their own lived experiences as a guide.7 Game of Thrones and A Song of Ice and Fire are interesting case studies because while they offer problematic representations of disability, they also present examples of how imaginative fiction can live up to the potential of the genre. Of his (literally) thousands of characters, Martin is renowned for presenting more characters with disabilities than other fantasy series of such popularity.8 In addition to his critically acclaimed character, Tyrion Lannister, Martin provides audiences with a boy who is paralyzed, a scholar who is blind, a soldier who loses a hand, a man with a learning disability, among many others. Despite this, both the show and books still fall victim to the use of simplistic disability tropes and the sheer length and detail of the series provides plenty of opportunities for more problematic examples of disability representation. As an adaptation, Game of Thrones shifts the form of the original story from literature to television media and thus makes some necessary (author-approved) changes to plot and character. Though Linda Hutcheon claims in her work, A Theory of Adaptation, that the dramatization of the novel requires a distillation of size and complexity, I argue that this is not the case with Game of Thrones.9 Indeed many characters arguably gain complexity, and though some elements are taken out of the story, new ones are also added. This is made possible primarily by the length of time given (the series enters its seventh season of ten hour-long episodes in 2017) and the limited censorship imposed by its network, HBO. It is therefore interesting to note which characters do not make the cut. Tyrion Lannister, one of the shows most beloved characters and a man with dwarfism, is an excellent (though we will see imperfect) example of complex disability representation in pop culture. Absent entirely from the show is Penny, another character with dwarfism who is a woman. Together, these characters represent much of what the wide spectrum of disability representation has to offer. This comparison also serves to highlight a key failing of many popular fantasy stories —a notable lack of intersectional disability representation. This chapter is not interested in medium specificity and the conventions unique to different methods of storytelling. Given the popularity of A Song of Ice and Fire (both before and since the creation of Game of Thrones), it is useful to study this source material to understand why Tyrion is such a strong character and Penny comparatively less so. To explore both the potential of the fantasy genre, and some of its weaknesses, this chapter therefore focuses on these two most prominent dwarfs of Martin’s A Song of Ice and Fire.10

The Function of Disability in Narrative Fiction Disability has two primary functions in fiction: as a standard form of characterization and as a metaphorical device.11 In both of these cases, physical disability and behavioral differences function as simple visual cues to distinguish a character or concept, without necessarily producing a complex subject. The disabled body might stand as a narrative emblem of the physical limitations of the “normal” body, or as a reminder to the audience of the fragility of their situation, 114

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but it rarely acknowledges the impossibility of the ideal body—that normality functions within the social and historical limitations of its time and location. The ideal body is enabled by the minoritization of difference, where the concerns of those who are “different” are claimed as limited to a specific group and not impacting the wider community. When “difference” is legitimized as a valid concept, and not simply the product of a socially maintained notion of normalcy, certain humans and qualities are categorized as “normal,” encouraging the social degradation of individuals who possess other qualities. This social categorization is known as “stigmatization,” and crucially, it is the dominant group in society that has the power to define which differences are inherently inferior.12 Most stigmatized characters are denied the right to actively impact the perception society has of them.13 Resistance culture in fiction allows characters with disabilities to reject the dominant paradigms that would mark them as less valuable, giving them the power to create their own autonomy.14 In resistance culture, authors create an empowering identity by rejecting hegemonic discourse and encouraging “freakery” as a natural part of the human experience, rather than something that separates a character from the rest of humanity.15 Freakery is not an inherent trait of an individual; rather, it is the celebration or exploitation of an individual’s bodily difference, framed by a set of cultural expectations.16 This is especially powerful in fantasy narratives, where freakery is employed frequently by the genre as a spectacle of Otherness. By rejecting the conventional usage within the genre, and instead integrating freakery into the politics of the narrative, fantasy writers have the ability to invite the audience and the “freak” to stand side by side, gazing in upon the social constructions that produce stigmatization. Over the last few decades, scholars have begun to acknowledge the subversive power of fictional depictions of disability.17 Transgressive reappropriation recognizes how rejecting a euphemistic lexicon and reclaiming derogatory descriptions can force audiences to face their own ignorance and cultural violence. Though bodies viscerally described as “twisted” or “mutilated” encourage the audience’s fascination with physical difference, this does not mean representation of such characters is necessarily exploitative. Martin’s Tyrion Lannister is one such example of this; though Martin often confronts readers with details descriptions of Tyrion’s body, these are always framed by the personal experiences and prejudices of the various characters voicing them. Conversely, A Song of Ice and Fire also presents its readers with a motley collection of “freaks” for the reader to enjoy at a simpler level. These minor characters are distinct from Tyrion, as their difference is not coded as “disability,” but instead using a fantasy lexicon, establishing them as a viable source of entertainment. By saying someone is a type of person rather than having a particular quality, they are established as fundamentally different, creating a greater social distance between the “normal” viewer and the stigmatized subject.18 Fantasy writers might thus be forgiven this use of “coding,” as such social categorization can be excused as a convention of the genre.19 The freak has the dual role of reassuring the audience of their normality, and standing as a symbol of freedom from culturally enforced homogeneity, allowing the audience to identify with subjects from a safe distance.20 One way that Martin integrates this fascination of the freak into A Song of Ice and Fire is through the use of canonical mythology and folklore, evident in lines such as, “He says that it is good luck to rub the head of a dwarf.”21 These mythologies are generally exaggerated to highlight the absurdity of such beliefs, as demonstrated in Tyrion’s retort: “Tell him that it is even better luck to suck on a dwarf’s cock.” The functional use of disability in fiction is a key component of “narrative prosthesis,” a phrase used to describe the historical exploitation of the disabled body as a source of cultural resistance or representational power in fictional narratives.22 Narrative prosthesis allows us to explore the contrast between the way society seeks to minimize and hide disability, while literature exploits the visibility of physical disability as a literary device. The purpose of this is not to condemn fictional narratives, but 115

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rather to acknowledge the complex relationship between stories and reality, and understand the ability of fiction to impact the experiences of people with disabilities.

Tyrion Lannister The reader is first introduced to Tyrion Lannister through the eyes of Jon Snow, a point-of-view character in A Song of Ice and Fire: Tyrion Lannister, the youngest of Lord Tywin’s brood and by far the ugliest. All that the gods had given Cersei and Jaime, they had denied Tyrion. He was a dwarf, half his brother’s height, struggling to keep pace on stunted legs. His head was too large for his body, with a brute’s squashed-in face beneath a swollen shelf of brow. One green eye and one black one peered out from under a lank fall of hair so blond it seemed white.23 Martin’s description of Tyrion demonstrates how affective depictions of freakery can be used subversively. The word “dwarf” is generally associated with classic fantasy representations such as the seven companions of Snow White or the characters of a Tolkien novel.24 Martin confronts this expectation by reminding his audience that Tyrion is not another species—he is as human as his brother and sister. Where Cersei and Jaime are tall and beautiful, Tyrion is short and ugly. Unlike his siblings, Tyrion waddles and struggles to keep up with the party due to his “stunted legs.” Martin’s dwarfs cannot be considered quaint and inherently “different” creatures, as most other dwarfs in the fantasy genre are; they are human beings, and thus will always be compared to the “normal” humans who surround them. The dwarf is typically a supporting character, animated and interesting, but only in its peculiarities and never valuable beyond fitting its narrowly defined role in the narrative. In the tradition of popular literature, we would expect Tyrion to remain within the personal narratives of other characters, always being peered in on by other characters, but never given the opportunity to voice his own opinions.25 Tyrion, however, quickly unravels this expectation. He is witty and entirely aware of his position in society. Shortly after his introduction in the story he quips, “Dwarfs don’t have to be tactful. Generations of capering fools in motley have won me the right to dress badly and say any damn thing that comes into my head.”26 Tyrion’s self-deprecating humor takes the power out of the insults of other characters, and his witty observations quickly mark him as one of the most perceptive characters in the series. In his own words, he has a “realistic grasp of [his] own strengths and weaknesses,” and so focuses his energy on improving his knowledge of the world he lives in.27 Tyrion’s comments demonstrate that he understands the potential of transgressive reappropriation, and that his jokes should not be considered offhanded remarks. Rather, they are a considered and targeted commentary on the way he is treated by society. Tyrion is an imperfect character, and in many ways it is his flaws that endear him to audiences as a realistic and complex human being. He reflects early in the series how he becomes “uncomfortably aware of his deformities and shortcomings” whenever his father looks at him, displaying the first signs of a long-borne conflict that eventually escalates to patricide.28 The relationship between father and son is bitter and painful. It is not until A Storm of Swords that Tyrion (after being falsely accused of murdering the King) is finally able to articulate to his father the unfairness of the way he has been treated: “I am guilty of a more monstrous crime … I was born. I lived. I am guilty of being a dwarf, I confess it … I have been on trial for being a dwarf my entire life.”29 Tyrion attempts to force his father and the rest of the court to admit their prejudices and the part they play in his trial, but is met with laughter and contempt. Though his father claims he is 116

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not on trial for being a dwarf, the reader understands this as false; Tyrion’s trial elucidates the collective prejudices of the society he lives in, where presenting the freak as a straw man is more valuable than real justice. In addition to the difficult relationship with his father, Tyrion’s encounters with women are also deeply impacted by his experiences of navigating a prejudiced society as a dwarf. Prostitution is frequently used as a substitute for romantic relationships, yet even this is fraught with political awkwardness, as demonstrated in A Game of Thrones when he requests the services of a prostitute: “Be certain that you tell her who I am, and warn her of what I am.” Jyck had not always troubled to do that. There was a look the girls got in their eyes sometimes when they first beheld the lordling they’d been hired to pleasure … a look that Tyrion Lannister did not ever care to see again.30 Though Tyrion generally appears to be comfortable with who he is, the reality of stigmatization still has the ability to hurt him, especially when sex is involved. Prostitution constitutes a form of escapism for Tyrion, where he is able to play the role of a man unburdened by the social stigma of being a dwarf. These encounters allow Tyrion to put aside his sarcastic and confronting commentary, and instead construct a situation where he can (temporarily) pretend the hegemonic values of normalcy do not affect him.31 Yet even within his performative interactions with prostitution, Tyrion does not imagine that he is not a dwarf—instead he simply pretends that his corporeal difference does not matter. Tyrion embraces the subversive nickname the prostitute Shae gives him, delighting in being called her “giant of Lannister.” His ability to accept himself and reject the cultural scripts assigned to him, even during interactions that are inherently constructed and playful, suggests that at his core, Tyrion does not wish he was not a dwarf; rather, he wishes that his society accepted his body as normal. This distinction is at the heart of what sets Tyrion apart from so many popular depictions of disability. Tyrion rejects the idea that disability is a problem, and instead reminds audiences that he is simply a man whom society has refused to accommodate. With Tyrion Lannister, Martin does what few other notable fantasy authors do: he creates a complex, relatable and strong yet flawed character with a disability. Tyrion is completely unlike the dwarfs of Snow White or The Hobbit—in fact, he is widely regarded as the best-written character of the series. Tyrion constitutes the “politicized prodigy,” a character able to claim his own identity, distinct from the colonized body of the freak show.32 He rejects the romanticization of disability, and resists the perilous temptation of viewing disability and pain as “more real” than the able body.33 Tyrion’s identity incorporates the lived experiences of having a disability in the culture he belongs to, but is not limited to such a definition and so is transgressive without escaping the reality of prejudice. In this way, Tyrion stands out as a character uninhibited by the strict disability tropes of the fantasy genre.

Penny In contrast, Penny’s primary role in the series is to provide a foil for Tyrion. First introduced as a court entertainer, Penny is immediately established as a source of embarrassment for Tyrion, due to the foolish and sometimes grotesque ways she presents herself. While as dwarfs, both characters face similar social and political obstacles, Penny’s attitude and social situation are distinctly different to Tyrion’s: where Tyrion resists cultural assumptions of his value in society, Penny literally performs her role with keen attention to the expectations of those around her. When she pleads, “We have to make them like us. If we give them a show, it will help them forget,” she explicitly vocalizes her perceived role in society.34 While today the court-jester dwarf is 117

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seemingly unique to fantasy literature, contemporary society continues to accept this caricature as a reality. The “dwarf” is first introduced to children through stories, and thus becomes the first point of reference for most people when they meet a person with dwarfism.35 Though readers are positioned to pity Penny’s interpretation of her value, and consequently admire Tyrion for transgressing such an expectation, in reality, Penny is demonstrating how perceptive she is of the way disability narratives dictate her role in society. Her eagerness to conform to her expected role might seem undignified, but it allows her to safely navigate a prejudiced and often violent society. Though Penny is superficially presented as a character with agency, her function in A Song of Ice and Fire suggests otherwise. She argues with Tyrion that to make others laugh, even through degrading actions (such as simulating crude sex acts with her brother), is “noble” and “honorable.”36 This position is problematic in that it assumes that removing an individual from the category of “victim” provides them with the freedom to consent to exploitation, degradation and oppression. Consent theory assumes that the relationship between an individual and society is by choice, which ignores conditions of birth and circumstance as major contributing factors to social power.37 Additionally, lack of coercion is not enough to claim an individual’s consent; that individual must also have access to a range of meaningful choices that they have the sufficient mental capacity to evaluate, and they must be given time and space to make their choice. Penny consistently makes choices that are dictated by her fear of, and desire to please “big people.” Even her (self-assigned) name betrays the impact of cultural prejudices: “pennies” and “groats” (the name of her brother) are the smallest and least valuable coins in A Song of Ice and Fire, displaying Penny’s incredibly low perception of her own self-worth. Penny’s attitudes should not be considered as isolated or purely literary; Goffman recounts a similar perspective in Stigma: I once knew a dwarf who was a very pathetic example of this, indeed. She was very small, about four feet tall, and she was extremely well educated. In front of people, however, she was very careful not to be anything other than “the dwarf” … Only when she was among friends, she could throw away her cap and bells and dare to be the woman she really was: intelligent, sad, and very lonely.38 This anecdote presents a complicated perspective on “passing,” an idea that is usually used in disability politics to describe a person who is able to hide their disability and pass as “normal.” In Penny’s case, as well as the example given by Goffman, passing instead requires the subject to exaggerate the aspects of their disability that society understands and behave in a manner that will be accepted within the narrowly defined role they have been allowed.39 A sense of identity beyond their disability is not permitted, nor is self-pride. Ableist discourses encourage people with disabilities to act only as they are expected to act—disabled, inferior and helpless. This serves only to protect the insecurities and suspicions of those around them who consider themselves to be “normal.” Though Martin has been praised by many for the complexity of characters such as Tyrion, the multitude of minor characters who fall within disability stereotypes suggests that audiences continue to be comforted by characters who do not stray too far from the familiar roles prescribed by society. This, perhaps, explains why characters with disabilities are so regularly limited to stereotypical depictions in popular culture.

Intersectional Disability Politics In addition to Martin’s arguable exclusivity when it comes to complex disability representation, A Song of Ice and Fire is also significantly lacking in intersectional disability representation. To explore intersectionality in disability politics, it is useful to apply the framework of “feminist 118

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disability studies,” a critical structure that broadens inquiry into how the many systems associated with disability and feminism operate together to grant power and privilege to the established dominant paradigm.40 Feminist disability theory is able to challenge the current understanding of human diversity, multiculturalism and body politics, to go beyond the explicit disability tropes of fantasy literature and address the intersection of disability with gender, race, sexuality, class, culture and wealth. The interplay of various political identities, and how they construct and contradict each other, must be considered before the experiences of people living under multiple systems of oppression can be adequately represented. Fictional women with disabilities can be seen as a barometer for current attitudes towards women with disabilities in society, which makes Penny a crucial subject for analysis, as the only named female character in A Song of Ice and Fire who is considered to be disabled.41 Beyond her submissive behavior towards her brother and father, she is generally presented as genderless. She successfully disguises herself as a male to attract less attention, but even when she is clearly female, she is not treated like any of the other female characters in the series (where even the “ugly” women are sexually objectified). Penny’s virginity is not a conscious choice, but rather a consequence of the stigma attached to her body and her personal belief that no “big person” could be sexually attracted to her. Though Martin has created many female characters who transgress traditional feminine roles, Penny is not one of them.42 Gender and sexuality are denied to her, just as they are regularly denied to people with disabilities by writers and society. Thus Penny exemplifies the social myth that women with disabilities are neither feminine nor sexual. Though the strength of fantasy comes from its ability to interpret and reflect the real world, the imaginative nature of the genre also allows room for exploration of what is possible when it comes to intersectional representation. Martin as a writer has the agency to present Penny as a desirable and sexual being with dwarfism, but sexuality is offered only to Tyrion, who, though impacted by cultural prejudice, is allowed the opportunity to pursue his sexual desires. Indeed Tyrion, were he not a dwarf, would be the veritable poster child for privilege—he is a white, heterosexual, cisgendered male, favored with wealth, education and political power. Though the presentation of a highly successful character with a disability is undoubtedly positive, readers of A Song of Ice and Fire are provided with few stories of individuals with disabilities who also experience discrimination based on factors such as gender, poverty or ethnicity. This may, perhaps, allow for a more optimistic portrayal of disability, but it means that readers who are objects of intersectional discrimination are lacking representation among the thousands of named characters in the series. Intersectionality is a challenging issue for writers to address, as the diversity of experiences can be compounded in its subjects, but it is a reality that many readers face. By compartmentalizing discrimination, Martin submits to the dominant ableist narratives of society: he treats instances of discrimination as isolated events, and does not connect these narratives to a larger story. While his treatment of dwarfs or women is portrayed as part of a larger culture of systemized oppression, Martin never links the two. He similarly never explores how other forms of discrimination (such as racial or homophobic bigotry) impact individuals with disabilities who are already targets of oppression.

Conclusion Though the level of attention A Song of Ice and Fire affords disability marks it as a relevant subject for critical analysis, the praise attracted by the series shows that the fantasy genre still has far to go in achieving adequate disability representation. Martin’s frequent use of disability tropes demonstrates the comfort of the genre in relying on simplistic motifs and tried plot devices in place of detailed character development. Though Martin has succeeding in creating a number of well-developed characters beyond these tropes, many fantasy texts do not make this effort and there is still a great deal of work to be done in investigating how more fantasy writers treat narrative disability, when 119

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they address the topic at all. A more universalizing view of disability is necessary, where issues concerning a particular difference are understood as important for a wide range of identities. Exploring intersectional discrimination is one way that writers can draw together multiple narratives to expose the underlying prejudices of a society. The imaginative nature of the fantasy genre offers the flexibility to allow for alternate narratives; in a world featuring dragons and magic, there is surely room for a woman with dwarfism who expresses her gender identity and sexuality uninhabited or disabled characters who transgress their culturally assigned roles without the privileges of race, wealth, class and education. It is also interesting to note that while Tyrion has been lauded almost universally as an interesting and complex character, Penny’s exclusion from the television adaption means she has been largely forgotten. The question must therefore be asked: Is Penny ignored because of the weaknesses of her character, or are the stories of characters like Penny simply less important to audiences? Though it can be argued that Penny’s flaws would have made for a potentially harmful television inclusion, many of the other characters have been rewritten for Game of Thrones in ways that greatly strengthen them.43 Popular fantasy has the capacity to provide complex and constructive intersectional disability representation; if it manages to achieves this, it will better reflect the real and diverse lives of people with disabilities.

Notes 1 Heather Stuart, “Media Portrayal of Mental Illness and Its Treatments: What Effect Does It Have on People with Mental Illness?” CNS Drugs 20, no. 2 (2006): 99–106. 2 s. e. smith, “To Go Where No Ism Has Gone Before: Disability at the Final Frontier,” in Shattering Ableist Narratives, WisCon Chronicles, Vol. 7, ed. JoSelle Vanderhooft (Seattle, WA: Aqueduct Press, 2013), 83–95; Stef Maruch, “Panel Musings: Body Acceptance—From All Sides,” in Shattering Ableist Narratives, WisCon Chronicles, Vol. 7, ed. JoSelle Vanderhooft (Seattle, WA: Aqueduct Press, 2013), 189–194. 3 Lennard Davis, “Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century,” in The Disability Studies Reader, ed. Lennard Davis (New York: Routledge, 1997), 9–10. 4 David Mitchell and Sharon Snyder, Cultural Locations of Disability (Chicago: University of Chicago Press, 2010), 5–12. 5 Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), 9–10. 6 For more on disability stereotypes in literature, see Garland-Thomson, Extraordinary Bodies; David Mitchell and Sharon Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Michigan: University of Michigan Press, 2000); Barbara Baskin and Karen Harris, Notes from a Different Drummer: A Guide to Juvenile Literature Portraying the Handicapped (New York: R. R. Bowker, 1977); Emiliano C. Ayala, “‘Poor Little Things’ and ‘Brave Little Souls’: The Portrayal of Individuals with Disabilities in Children’s Literature,” Literacy Research and Instruction 39, no. 1 (2010): 103–117. 7 Maria Nikolajeva, Reading for Learning: Cognitive Approaches to Children’s Literature (Amsterdam: John Benjamins, 2014), 44. 8 Pascal Massie and Lauryn Mayer, “Bringing Elsewhere Home: A Song of Ice and Fire’s Ethics of Disability,” in Studies in Medievalism, ed. Karl Fugelso (Cambridge: D. S. Brewer, 2014), 45–59. 9 Linda Hutcheon with Siobhan O’Flynn, A Theory of Adaptation, 2nd ed. (New York: Routledge, 2013), 36. 10 This chapter looks at the first five books of George R. R. Martin’s A Song of Ice and Fire series published by Harper Voyager, London: A Game of Thrones (1996); A Clash of Kings (1998); A Storm of Swords Part 1: Steel and Snow (2000); A Storm of Swords Part 2: Blood and Gold (2000); A Feast for Crows (2005); and A Dance with Dragons (2011). 11 Mitchell and Snyder, Narrative Prosthesis, 4–6. 12 Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (London: Penguin, 1963), 66. 13 s. e. smith, “Defining Disability in a World that Fears Disability,” in Shattering Ableist Narratives, WisCon Chronicles, Vol. 7, ed. JoSelle Vanderhooft (Seattle, WA: Aqueduct Press, 2013). 14 Garland-Thomson, Extraordinary Bodies, 123.

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15 Garland-Thomson, Extraordinary Bodies, 133. 16 Robert Bogdon, “The Social Construction of Freaks,” in Freakery: Cultural Spectacles of the Extraordinary Body, ed. Rosemarie Garland-Thomson (New York: New York University Press, 1996), 24. 17 Mitchell and Snyder, Narrative Prosthesis, 35. 18 There is opportunity for further research into the distinction between difference marked as “disability” and fantastical difference in the fantasy genre. Fantasy coding may be theorized as a form of stigmatization used to distance fantasy narratives from disability discourses, or as a conscious resistance against the euphemistic language accepted in modern society, thus establishing the fantasy setting as distinct from a contemporary setting. For further reading on the shift to “people-first” language in contexts other than the fantasy genre, see Helena Halmari, “Political Correctness, Euphemism, and Language Change: The Case of ‘People First,’” Journal of Pragmatics 43, no. 3 (2011): 828–840. 19 Martin’s lexicon regarding disability is consistent with the language of the fantasy genre, where terms such as “dwarf” or “imp” are socially acceptable (though generally not welcomed by those to whom they are directed) within the context of the fictional society. 20 Loni Reynolds, ‘“The Mad Ones’ and the ‘Geeks’: Cognitive and Physical Disability in the Writing of Jack Kerouac and Allen Ginsberg,” Journal of Literary and Cultural Disability Studies 9, no. 2 (2015): 155–156. 21 Martin, A Dance with Dragons, 331. 22 Mitchell and Snyder, Narrative Prosthesis, 49. 23 Martin, A Game of Thrones, 48. 24 Leslie Fiedler, Freaks: Myths & Images of the Secret Self (New York: Touchstone, 1978), 43. 25 Davis, “Constructing Normalcy,” 21. 26 Martin, A Game of Thrones, 53. 27 Martin, A Game of Thrones, 118. 28 Martin, A Game of Thrones, 590. 29 Martin, A Storm of Swords 2: Blood and Gold, 389. 30 Martin, A Game of Thrones, 655. 31 For further analysis of Tyrion’s sexuality, see Charles Lambert, “A Tender Spot in My Heart: Disability in A Song of Ice and Fire,” Critical Quarterly 57, no. 1 (2015): 20–33; and Massie and Mayer, “Bringing Elsewhere Home.” 32 Garland-Thomson, Extraordinary Bodies, 131. 33 Tobin Siebers, “Disability in Theory: From Social Constructionism to the New Realism of the Body,” American Literary History 13, no. 4 (2001): 749. 34 Martin, A Dance with Dragons, 616. 35 Fiedler, Freaks, 39. 36 Martin, A Dance with Dragons, 512. 37 David Gerber, “The ‘Careers’ of People Exhibited in Freak Shows: The Problems of Volition and Valorization,” in Freakery: Cultural Spectacles of the Extraordinary Body, ed. Rosemarie Garland-Thomson (New York: New York University Press, 1996), 38–40. 38 Goffman, Stigma, 134. 39 Tobin Siebers, “Disability as Masquerade,” Literature and Medicine 23, no. 1 (2004): 2–4. 40 Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” National Women’s Studies Association Journal 14, no. 3 (2002): 4. 41 For further reading on the relationship between women with disabilities in fiction and society, see Deborah Kent, “Disabled Women: Portraits in Fiction and Drama,” in Images of the Disabled, Disabling Images, ed. Alan Gartner and Tom Joe (New York: Praeger, 1987), 47–63. 42 Notable examples include Arya and Brienne. 43 For example, Daenerys, Sansa and Yara (named Asha in the books) are all arguably stronger female characters in the television adaptation.

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11 EMBODYING METAPHORS Disability Tropes in Political Cartoons Beth Haller

For centuries, metaphors about disability have been embedded in language. Common linguistic metaphors such as “to be blind to” or “crippled by fear” not only express ideas, they shape them and thus they have shaped cultural attitudes toward disability. These phrases create a kind of shorthand for negative, stigmatizing concepts: terms like “turning a deaf ear” for someone not listening, “lame duck” for one without power and “blind” to describe someone who refuses to face facts. These disability tropes can also be found in numerous visual communication contexts such as the ubiquitous images in political cartoons that one might find looking at a newspaper or surfing the Web. This chapter investigates selected cartoon images in the US media from the nineteenth century to 2015 as a way to investigate the intersection of disability metaphors within news media political cartoon practices.1 Political cartoons throughout US newspaper history are an excellent source of disability imagery because many focus on exaggeration and satire to convey messages in broad themes.2 Cartoonists translate linguistic metaphors into visual and symbolic ones.3 This analysis of cartoons investigates only those with metaphorical imagery, which has long framed disability with “negative” connotations.4 Disability studies scholars David Mitchell and Sharon Snyder explain that historically “the analysis of the negative images helped to support the idea that disability was socially produced. Identifying common characterizations that reinforced audiences’ sense of alienation and distance from disability began an important process of scholarly attempts to rehabilitate public beliefs.”5 British disability studies scholar Colin Barnes says the media’s “disabling stereotypes … are fundamental to the discrimination and exploitation which disabled people encounter daily, and contribute significantly to their systematic exclusion from mainstream community life.”6 Related to the concept of narrative prosthesis developed by Mitchell and Snyder, disability becomes the representational “crutch” that props up the humor in many political cartoons created by nondisabled people.7 As visual communication scholar Paul Lester says, “When the media engage in stereotyping, misleading representations about diverse cultural groups are confirmed … and in this visually stimulated, alarmingly cautious world, imagination is more often shaped by mediated, rather than direct images.”8 These metaphors have cultural implications because they tell us about how our society views disability. “We understand metaphors because we share experiences, and we come to experience the world in a certain way as a result of how we metaphorize it,” says Canadian disability rhetoric scholar Jay Dolmage.9

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The concern from the disability community is about the ableist cultural attitudes imbedded in these metaphors. Media narratives that ignore, devalue or misrepresent disability issues reflect the ableism of society through those narratives.10 Media content, like a political cartoon, is powerfully shaped by dominant societal beliefs about disability. When these dominant beliefs ignore or represent disabled people with stereotypes, this creates a framework of “ableism.”11 The ableism within media content presents people with disabilities as inferior to able-bodied people, as “defective” or as having a worthless status.12 Ableism creates a societal meta-narrative in which “society perceives disabled persons to be damaged, defective, and less socially marketable than non-disabled persons,”13 and this ableism plays out in something as ubiquitous as a political cartoon. Through a critical examination of cartoon images (more than 700 cartoons with disability imagery have been collected and analyzed14 using Asa Berger’s media analysis technique15), this chapter delineates a better understanding of the use of disability metaphors in political cartoons, which contribute to the cultural framing of disability.

Cartoons as Cultural Communication Communication scholar and former cartoonist Randall P. Harrison explains the complexity of the cartoon as communication: The cartoon is seen as educator and editorialist, as seller and seducer. It’s seen as a purveyor of culture, or a perverter of culture; as art or literature or both or neither. The cartoon can educate or irritate, tickle or tease, inform or reform. But underlying the many viewpoints about the cartoon is single proposition: The cartoon is communication.16 This chapter asserts that as a form of communication, cartoons fit with communication theorist James Carey’s ritual model of communication. Carey put forth the theory that communication functions within two models in culture: the transmission model, in which information moves in a linear fashion from a source to an audience, and the ritual model, which is directed, “not toward the extension of messages in space but toward the maintenance of society in time; not the act of imparting information but the representation of shared beliefs.”17 Readers use newspapers as an affirmation of a “reality” that is constructed by the narratives about the world in the news. Reading news within the ritual view of communication means nothing new is learned but a specific view of the world is presented and confirmed for the reader.18 Because these readers are familiar with the metaphors and symbols about their culture, they have the visual literacy needed19 to fit within Carey’s ritual model of communication. Political cartoon reading is a good example of the ritual model.20 The intent of a cartoon is not to convey new information; on the contrary, it relies on a reader’s understanding of the topic or president/government official21 being satirized and of general cultural metaphors such as those about disability, such as “crippled by taxes” or “blind to injustice,” and so on. Looking at them as opinion pieces in the news media, readers know to read political cartoons as satire. Within the ritual view of communication, these cartoons also project and confirm the social order within the cultural world. They frame and reinforce a specific view of the world. However, in political cartoons, these frames are exaggerated and twisted to comment on societal issues. As cartoonist David Horsey has noted, political cartoonists deliberately hold up a kind of “funhouse mirror” to the world: They depict a distorted, exaggerated, often grotesque view of “reality,” and to symbolize that “grotesqueness” or “societal dysfunction,” they often use disability imagery.22 Cartoonists rely on audience members’ understanding of cultural metaphors and symbols. Their visual style makes a unique contribution to analyzing and critiquing social issues because of those symbols and metaphors.23 Political cartoons can tell us much about societal views of 123

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groups such as women, people of color or political candidates through the metaphors and representations they use.24 Often these cartoons about societal groups are stigmatizing and these tropes may be even more damaging because humorous content can be more unforgettable25 and persuasive.26 Political cartoons “are important avenues of cultural communication that may simultaneously reflect, reinforce, and create influential narratives about the characters they satirize.”27 In like fashion, stereotypes and metaphors about disability have been used in literature and images for centuries “with the deformity of the body associated with the deformity of spirit,” as media and disability scholar Jack Nelson points out.28 In the case of disability representation through metaphors in political cartoons specifically, stigmatizing tropes can promote negative ideas about people who have a physical or mental impairment.29 As disability studies scholar Rosemarie Garland-Thomson says, “All representations have social and political consequences.”30

Analysis of Tropes about Disability in Political Cartoons With hundreds of cartoons to select from, this chapter had to narrow the cartoons to evaluate, focusing on what Edwards calls embodied metaphors about people in the cartoons.31 Therefore, the cartoons analyzed are about disability or bodily impairments in the cartoons, rather than actual people with disabilities. (Other projects looking at political cartoons have evaluated representations of disabled veterans and news about them.)32 Interestingly, even a disabled leader like President Franklin D. Roosevelt, who was a wheelchair user, was not depicted with a disability. In fact, he appeared in some cartoons as the healthy “doctor” trying to heal an America “disabled” by the Great Depression. The cartoons in our study contain disability tropes in many forms. Table 11.1 shows the categories of representations of disabilities and bodily impairments found within them. Many cartoons use medical or adaptive equipment to signal disability or bodily injury, such as wheelchairs, scooters, canes, crutches, walkers, hospital beds or gurneys, intravenous tubes (IVs), oxygen tanks, slings, medications, salves or bandages. Blindness has been used metaphorically since Biblical times. Mass communication scholar Lee Wilkens says, “Stereotypes of the blind are among the most evocative in contemporary culture,” ranging from being a fool to being punished for sins to being magical.33 The political cartoons included a whole category of blindness tropes: being guided or guiding others, eye patches, dark glasses, blindfolds, canes tapping, guide dogs and even blind fictional characters such as Mr. Magoo and the three blind mice. Ageist metaphors sometimes intersect with disability with characters wearing stereotypes of age: “Granny glasses” or a lap blanket while sitting in a wheelchair. Other indicators of age in the cartoon characters are a hunched-over body or wrinkles. In some cartoons, the disability is labeled through the words used such as “convalescent,” “la grippe,” “incurable ward,” “people’s rest home,” “hire the handicapped program,” “appropriationally challenged” or “neoconvalescent home.” A straitjacket often represented mental illness or “insanity,” but other cartoons used pictures of tree nuts or put someone into what appeared to be a psychiatric ward isolation room. Finally, many cartoons use indicators of a bodily impairment to create the metaphor: Achilles heel, amputation of limbs, broken legs or arms, a hook for a hand, a knee injury, a prosthetic leg (ranging from a wooden peg leg in the twentieth century to a modern prosthetic in the twentyfirst century) and wounds on the body such as bullet holes. This analysis selected political cartoons from five different US political eras to illustrate how the cartoons deploy the disability tropes. For example, a cartoon created in 1863 by the famed nineteenth-century cartoonist Thomas Nast,34 known as the Father of the American political cartoon,35 depicts President Lincoln and his cabinet (Figure 11.1). The cartoon shows Lincoln as a teacher sitting on a stool before a writing desk and in front of him stand four members of his 124

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Table 11.1 Categories of representations of disabilities/bodily impairments in political cartoons Bodily impairment •

Achilles heel

•

Amputation of limbs

•

Black eyes

•

Broken legs/arms

•

Hook for a hand

•

Hunched over body (usually to indicate age)

•

Knee injury

•

Obesity

•

Old age

•

Wrinkles

•

Wounds, bullet holes, etc.

Labeling •

“Appropriationally challenged”

•

“Convalescent”

•

Frankenstein monster

•

Grim reaper

•

“Hire the handicapped program”

•

“Incurable ward”

•

“La grippe”

•

“Neoconvalescent home”

•

“People’s rest home”

Medical equipment/supplies •

Bandages/band aids/slings/casts

•

Canes for mobility

•

Crutches

•

Doctor character ministering to others

•

Granny glasses

•

Hospital gurney

•

Lying in hospital bed

•

Oxygen tank

•

Medications/pills

•

IV bags, hanging blood bags

•

Salve being administered

•

Scooter for mobility

•

Prosthetic leg (typically a wooden peg leg in the twentieth century; modern prosthetic in the twentyfirst century)

•

Walker (usually to indicate old age)

•

Wheelchair (sometimes used to indicate old age) (Continued )

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Table 11.1 (Cont). Mental illness •

Blind people being guided or guiding others

•

Blindfold

•

Canes tapping to indicate blindness

•

Dark glasses to indicate blindness

•

Eye patch

•

Guide dog for blind person

•

Mental illness as stand-in for “evil” (Dr. Strangelove)

•

Mr. Magoo

•

Nuts to represent mental illness

•

Psychiatric hospital isolation ward

•

Straitjacket

•

Three blind mice

•

Visual impairment

•

White cane to indicate blindness

cabinet, all with bandages, eye patches and canes—two have their arms in slings, two have canes, two have head bandages and two have eye patches.36 In the background is a school-type setting with two large windows and other students at desks, one who has a dunce cap on. Lincoln is holding a ruler, menacingly pointing it at the four disabled and injured men. This cartoon uses the impaired men as a metaphor to represent Lincoln’s incompetent and ineffectual cabinet. Lincoln is shown as a formidable teacher who resonates as the strongest person in the cartoon, and he is larger and exudes power over the four men with bodily impairments. The second cartoon analyzed, also created by Thomas Nast, uses a typical personification of America, the Uncle Sam character. The cartoon shows Uncle Sam with his arm in a sling, a broken leg, eye patch and a crutch propped against the chaise longue he sits on37 (Figure 11.2). A bowl with a spoon in it sits behind Uncle Sam with writing on it that reads “the world’s mixture in U.S.” The cartoon illustrates a frequent disability metaphor about America to indicate it is weak and ineffectual. Nast was an early illustrator of Uncle Sam and is the artist who gave him his trademark goatee. (The term “Uncle Sam” originated during the War of 1812.38) Another famous cartoonist who depicted Uncle Sam as disabled was J.N. “Ding” Darling, who was a cartoonist for more than 30 years with cartoons covering World War I, the Great Depression and World War II.39 A black and white cartoon from March 4, 1917 depicts Uncle Sam standing before President Woodrow Wilson who sits at a desk in an office40 (Figure 11.3). Uncle Sam has a crutch under his left arm, a cane in his right hand, his head and left foot are in bandages, his right pant leg is pinned up revealing that he has no right leg and there are six bullet holes in various parts of his body. Two more bullets enter through the window behind him and fly past his head. A dialog box connected to Uncle Sam contains the text: “How long do you think it will be before we get into the war?” A sign tacked to the side of the desk reads “Armed Peace.” A bomb with a lit fuse labeled “plot” rests on the floor near Uncle Sam’s foot. The title of the cartoon is “So many people are asking, it would be interesting to know.” The metaphor of the cartoon is that America was becoming even more “disabled” by NOT entering World War 1.

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Figure 11.1 Thomas Nast cartoon of Abraham Lincoln and his cabinet titled “Schoolmaster Lincoln and His Boys,” published in the Southern Illustrated News, January 31, 1863.

Depicting a character in the cartoon as blind is a way many cartoonists signal incompetence. In a 1993 cartoon, Pat Oliphant depicts President Bill Clinton as a blind man to critique his foreign policy in the Balkans41 (Figure 11.4). The Clinton character is sitting on a park bench dressed in a suit; he wears dark glasses and in his right hand holds a mobility cane used by blind people. In his left hand, he holds the harness to a guide dog, which has the face of his first-term Secretary of State, Warren Christopher, who served 1993 to 1997; he also wears dark glasses to indicate blindness. Clinton says, “Is this the bus to foreign policy, Christopher?” Christopher responds, “Yes sir, I believe it is.” The trees in the park are dark; the leaves are blowing and a sign outside the park says it closes at dark. It is implied that they think they are at a bus stop but are in fact in a closed park in the dark, but don’t know that because they are blind. The Oliphant commentary duck says, “Next stop Bossniah.” The cartoon is clearly using a blindness metaphor to indicate Clinton and Christopher’s ignorance about what to do about unrest in Bosnia. In a simple cartoon from 2006, cartoonist Clay Bennett invokes the metaphor of mental illness when commenting on Iran’s President Mahmoud Ahmadinejad. Using photographic techniques, it depicts a variety of nut types, cashews, almonds, Brazil nuts, pecans and in the midst of these nuts is the head of Ahmadinejad. The cartoon is labeled, “Mixed nuts.”42 It may seem harmless to call a despised dictator “nuts,” but having a disabling mental illness is very different from being a cruel leader with hateful ideas. The National Alliance of the Mentally Ill (NAMI) actively fights against the stigma created by inaccurate media representations of mental illness. NAMI materials explain that mental illness is a biological brain condition that is treatable; the individual or family members did nothing to “cause” a mental illness. A NAMI chapter in Pennsylvania says, “Stigma is a cluster of negative attitudes and beliefs that motivate the public to fear, reject,

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Figure 11.2 Thomas Nast cartoon of Uncle Sam titled “Dr. Arthur’s Prescriptions,” published in Harper’s Weekly, December 16, 1882.

avoid and discriminate against people with mental illness. It is a barrier to treatment and prevents many people from seeking help that is available.”43 NAMI’s national office has an anti-stigma initiative that calls on its members to “protest prejudice and stereotypes in the media.”44 Finally, in Gary Varvel’s 2015 cartoon, “John Kerry’s broken leg,”45 the broken leg is used as both reality and metaphor (Figure 11.5). Secretary of State Kerry broke his leg in a cycling accident in France in late May 2015, but news media coverage of it focused on the upcoming June 30, 2015 deadline the United States faced in trying to reach nuclear accord with Iran.46 Depicting Kerry’s broken leg in the cartoon as foreign policy illustrates the metaphor of a broken part of a body as a stand-in for what the cartoonist is saying is a broken and ineffective foreign policy coming from Kerry and ultimately the United States. The consistent use of disability metaphors, as illustrated in this chapter from the Presidency of Abraham Lincoln to the Presidency of Barack Obama, exemplifies what cartoon historian Roger Fischer had said is the need for cartoonists to establish recognizable visual symbols that audiences can easily grasp.47 As Hess and Northridge explain: Cartoonists’ “use of juxtaposition of pictures and words, 128

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Figure 11.3 Jay N. “Ding” Darling cartoon of President Woodrow Wilson and Uncle Sam titled “So Many People Are Asking, It Would Be Interesting to Know,” published in Des Moines Register, March 4, 1917. Source: Courtesy of the Jay N. “Ding” Darling Wildlife Society.

caricatures and symbols, remains largely unchanged” from the nineteenth century to the present day.48 The problem arises when these cartoon symbols are feeding stigmatizing tropes about disability.

The Power of Disability Metaphors This chapter argues that political cartoons using disability tropes contribute to cultural representations of disability. These images, like in the Carey ritual view of cultural communication, have helped reinforce and confirm a particular view of disability throughout history and that continues today. This is significant because as disability studies scholars Paul Longmore and Lauri Umansky have said: “Unraveling the underlying meanings of disability’s ubiquity as an organizing concept or symbolic structure promises to become as much a goal of disability history in the future as charting the specific pasts of people with disabilities.”49 Most importantly, negative disability metaphors become infused into the culture and may have real consequences in the lives of actual people with disabilities. Garland-Thomson explains that “because disability is so strongly stigmatized and is countered by so few mitigating narratives, the literary traffic in metaphors often misrepresents or flattens the experience real people have of their own or others’ disabilities.”50 British disabled photographer, writer and activist David Hevey calls this “the tragedy principle” and says it connects impairment on the body with social failure.

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Figure 11.4 Pat Oliphant cartoon featuring President Bill Clinton and Secretary of State Warren Christopher. Source: Oliphant © 1993 Andrews McMeel Syndication. Reprinted with permission. All rights reserved.

Where impairment enters, the character is proven to be socially dead. Whether in television, theatre, cinema, fine art or charity advertising, the tragedy principle uses the impairment as a metaphor and a symbol for a socially unacceptable person and it is this tragedy principle which is the bone-cage surrounding historical and current disability representation.51 Canadian communication scholar Marilyn Dahl explains that cartoons are also significant transmitters of “prejudicial and discriminatory language and images of evil cripples.”52 As psycholinguists George Lakoff and Mark Johnson have theorized in Metaphors We Live By,53 these cultural tropes help define the conceptual system of a contemporary society’s members. Disability studies scholar Carrie Sandahl adds, “metaphors are not innocuous artistic flourishes, then, but powerful discursive structures that can misrepresent, define, and confine people with disabilities and as such are the focus of much disability activism.”54 For example, some disability groups have actively lobbied against the stigmatizing disability tropes in media, as well as misrepresentative supposedly “realistic” portrayals. The National Federation of the Blind, for example, fought Disney over its animated movie about Mr. Magoo, as “a bumbling, stumbling, idiotic character who makes supposedly humorous mistakes because of his inability to see … The misunderstandings of blindness caused by the Magoo character have bedeviled the lives of thousands of blind people.”55 Cartoonists still use Mr. Magoo as a stand-in for the concept of blindness equated with stupidity. As illustrated in this chapter’s analysis of political cartoons, tropes of physical or mental impairment usually signal something negative, which is often pointed out in the disability studies literature but rarely in the mass communication literature. Kenny Fries, a disabled writer who edited Staring Back: The Disability Experience from the Inside Out, says, “Disability becomes a stand-in, a metaphor, for the social outcast, who is marginalized, misunderstood.”56 British inclusion and diversity professors Sheila Riddell and Nick Watson, citing Michael Oliver, agree with Fries’ assessment: In art and literature, disabled people were presented as either superheroes, villains or tragic individuals, but never as ordinary people trying to carve out meaningful lives, like everybody else. The remedy for this cultural oppression was for disabled people to challenge these ideologies, forging new identities which challenged outworn stereotypes.57

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Figure 11.5 Cartoon about US foreign policy under Secretary of State John Kerry from June 2, 2015. Source: Gary Varvel, “John Kerry’s Broken Leg,” Indianapolis Star, June 2, 2015. By permission of Gary Varvel and Creators Syndicate, Inc.

This problem of stigmatizing disability metaphors in media has not gone away, but in recent years, people with disabilities have taken to the Internet to call out this continuing problem. As Kali, who has Ehlers-Danlos syndrome—a connective-tissue disorder that affects joints, skin and blood vessels—and blogs at Brilliant Mind Broken Body, says, “I am not your metaphor.” She writes: “I really hate the use of disability-based metaphors … I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.”58 She explains that she is not useless and works at a legal center for those living in poverty and does disability advocacy. “When you use disability metaphors, you hurt those of us who actually have disabilities,” she says. “I am NOT your metaphor. Find a new one.”59 Political cartoonists might argue that they mean no harm and are just using disability as a humor device, not focusing on real people with disabilities. However, a non-disabled cartoonist using disability to signal humor is connecting to cultural tropes that mock people with bodily impairments. Humor scholars say that humor represents an incongruity, or that humor arises from something unusual or out of place.60 These political cartoonists are using what they perceive as the “abnormality” or “oddness” of disability to invoke the incongruity that deploys the humor in a cartoon. Throughout history, disabled people have been mocked and been the objects of humor, whether as court jesters or as bumbling characters in cartoons. “Most of us have experienced negative forms of humor where we have been laughed at rather than laughed with,” explains British disability activist Bruce Baum.61 He calls this a kind of destructive humor that hurts disabled people. Destructive humor sets disability apart by using a physical difference as a device to get a laugh. Many people with disabilities worry about these destructive disability metaphors in humor. Blogger Miss Mary Max explains it is because of their connection to larger cultural representations that are often negative: The issue with metaphor—from my perspective—has less to do with the fact that we appropriate an identity/experience other than our own for the sake of art—and more to

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do with the fact that we generally appropriate that experience based on its representation in a dominant narrative.62 In addition, audiences mostly believe these dominant narratives to be true as Miss Mary Max further explains: Activists and advocates generally get irked because myths blur into realities. Myths have power, often more power than facts. Unfortunately, representations are rarely read—by audiences—as representations. They’re read—largely—as realities or (at best) as fictions based on true stories.63 Disabled blogger Kali reiterates how problematic these disability tropes are and mentions blindness metaphors specifically: We use sight metaphors to a ridiculous extent in our lexicon. And through all of these, we imply that people who are blind or nearsighted are incapable of planning, unable to comprehend the information available, so naive as to misunderstand the motives of others, and similar issues that have NOTHING to do with sight!64

Conclusion It is understood that these disability tropes in cartoons are not going away, but it is crucial for visual communication scholars to critique how the images perpetuate problematic cultural representations of disability. In so many political cartoons, disability is used as an exaggeration of perceived incompetence as a way to comment on society. Blogger Miss Mary Max says changing how these metaphors are used becomes an ethical issue. “Looking at how we can use metaphor ethically to challenge (rather than reaffirm problematic representations) begins to bring artistic expression back into the realm of social justice,” she says.65 Disability studies scholars Jay Dolmage and Rosemarie Garland-Thomson argue that too often those who culturally define disability are those without disabilities. However, one group that has begun to push back against these disability tropes in cartoons are cartoonists with disabilities. For example, the humor from the late quadriplegic cartoonist John Callahan grew from his individual cartoons in print media to books and cartoon TV shows like Quads and Pelswick.66 Callahan’s humor merges sick jokes and disability themes, coupling them with the powerful message of being drawn by an artist with a disability. According to British disability language scholar Jenny Corbett, “This exploration of bad taste in disability imagery could be seen as the antidote to tragic imagery, mocking and teasing, instead of displaying misery.”67 In a rhetorical analysis of Callahan’s gag cartoons, communication scholars Kara Shultz and Darla Germeroth found that his work challenges and then rejects the stereotypes about disabled people: Callahan uses humor as satire to attack ableist attitudes toward persons with disabilities. His gag cartoons provide a force of resistance by taking the stereotypes against persons with disabilities to a ridiculous extreme and poking fun at the attitudes of those who cling to their status of able-bodiedness.68 Shultz and Germeroth say that Callahan’s cartoons react against stigmatizing and ableist cultural representations of people with disabilities. 132

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Other disabled cartoonists have also taken control of “sick humor.” Sharon Wachsler, a cartoonist with chronic fatigue syndrome and multiple chemical sensitivity, wrote on her Sick Humor website: “As I was confronted with the daily frustrations, indignities, and peculiarities of life with chronic illness, I started drawing cartoons that depicted my experiences—transforming my anger into comedy.”69 Many disabled cartoonists believe in the authenticity of their message, so they do not particularly care if readers hate their work. Additionally, humor has long been a way for many groups to confront oppression. A number of ethnic and social groups have used humor as a way to protest against those who would put them down. Humor scholar D. C. Simmons says protest humor is an established method among oppressed groups.70 In cartoons about the medical profession, disability cartoonist Scott Chambers attacks an ableist majority group by pointing out how little the helping and health professions understand the disability experience. The disability rights publication Mouth regularly ran his cartoons. One of his cartoons shows a doctor at a psychiatric hospital extracting a patient’s brain, saying, “You won’t need this anymore!” Chambers mocks the views of some mental health professionals who believe they always know best, even when it hurts the patient.71 Many disabled cartoonists are practicing “constructive humor.” British disability advocate Bruce Baum says, “It is humor arising from their experiences as disabled people that teach the audiences about their lives.”72 Disabled people, who are creating disability culture in whatever form is accessible to them, are often turning disability metaphors on their heads. The late American performer, poet and playwright, Lynn Manning, who was blind, says metaphors are what writers use in their craft, but he stays away from any disability metaphors, letting “the story be about the grander aspect of the human condition, and let[ting] the disabled character be a forreal human being, for a change.”73 The late spoken-word poet and performer Cheryl Marie Wade, who was a wheelchair user, said she actively pushed back against disability metaphors: “We have to make our [disabled] characters so compelling and their emotional journeys so rich and full, that we demolish some of those metaphors, and those kind of simplistic and narrow views of what it means.”74 These disabled cartoonists, writers, performers and media makers are creating narratives to counter the cultural metaphors that they view as ableist, and in the process, they are constructing disability culture. Because being born with or acquiring a physical difference means the disabled person will experience the world in a unique way, many disabled people come together to create disability culture through activist work, organizational membership or art creation. Steve Brown, co-founder of Disability Culture Institute, explained that disability culture is “to exclaim pride in the condition of disability.”75 They do their work in an embrace of the disability rights movement, which has long fought against ableism in society. Media representations, like political cartoons, have long been a target because the disability community argues that these stigmatizing tropes lead to the further oppression of disabled people.

Notes 1 This chapter is dedicated to the late Arthur Shapiro, an education professor at Kean University in New Jersey, USA, and author of Everybody Belongs: Changing Negative Attitudes Toward Classmates with Disabilities, who originally collected the cartoons used in this chapter. Because the cartoons are not searchable by the metaphors used, Art did the hard work of finding hundreds of political cartoons that used disability metaphors. I am indebted to him for the large cartoon collection he created. 2 Randall P. Harrison, The Cartoon: Communication to the Quick (Beverly Hills, CA: Sage, 1981). 3 Robert A. Fischer, “Political Cartoon Symbols and the Divergence of Popular and Traditional Cultures in the United States,” in Dominant Symbols in Popular Culture, ed. Ray B. Browne, Marshall W. Fishwick and Kevin O. Browne (Bowling Green, OH: Bowling Green State University Popular Press, 1990), 181–208.

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Beth Haller 4 Jamie C. MacDougall, “Disability Metaphors Explained: The Senses vs. the Brain,” Accessibility News, January 7, 2008, www.accessibilitynews.ca/acnews/press/all_articles.php?all=141. 5 David Mitchell and Sharon Snyder, “Representation and Its Discontents: The Uneasy Home of Disability in Literature and Film,” in Handbook of Disability Studies, ed. Gary Albrecht, Kate Seelman and Michael Bury (Thousand Oaks, CA: Sage, 2001), 199. 6 Colin Barnes, Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People (Krumlin, UK: British Council of Organisations of Disabled People and Ryburn Publishing, 1992), 19, www.leeds.ac.uk/disability-studies/archiveuk/Barnes/disabling%20imagery.pdf. 7 Mitchell and Snyder, “Representation and Its Discontents.” 8 Paul Lester, ed., Images That Injure (Westport, CT: Praeger, 1996), xi. 9 Jay Dolmage, “Between the Valley and the Field. Metaphor and Disability,” Prose Studies 27 (2005): 111. 10 Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). 11 Sami Schalk, “Metaphorically Speaking: Ableist Metaphors in Feminist Writing,” Disability Studies Quarterly 33, no. 4 (2013), http://dsq-sds.org/article/view/3874/3410; Lennard Davis, “J’accuse! Cultural Imperialism—Ableist Style,” Social Alternatives 18 (1999): 36–41; Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998). 12 Joy Weeber, “What Could I Know of Racism?” Journal of Counseling & Development 77 (1999): 21. 13 Marilynn J. Phillips, “Damaged Goods: The Oral Narratives of the Experience of Disability in American Culture,” Social Science & Medicine 30 (1990): 850. 14 The cartoons were collected by the late Arthur Shapiro, an education professor at Kean University in New Jersey, USA. He began collecting editorial cartoons in the 1970s, first by gathering Best Editorial Cartoons of the Year books annually and scanning any cartoons that used disability imagery and later, with the advent of the Internet, finding databases of cartoonists’ works from the nineteenth and twentieth centuries. 15 Asa A. Berger, Media Research Techniques (Thousand Oaks, CA: Sage, 1998). 16 Harrison, The Cartoon, 31. 17 James Carey, Communication as Culture (New York: Routledge, 1992), 18. 18 Carey, Communication as Culture, 20. 19 Paul Messaris, Visual “Literacy”: Image, Mind and Reality (Boulder, CO: Westview Press, 1994). 20 Rachel Palmer, “What’s in a Cartoon? Circulation, Satire, and Cuban-American Identity” (paper presented at the American Journalism Historians Association—AEJMC History Division joint conference, New York, March 20, 2008). 21 J. C. Baumgartner, “Editorial Cartoons 2.0: The Effects of Digital Political Satire on Presidential Candidate Evaluations,” Presidential Studies Quarterly 38 (2008): 735–758. 22 Debra Hernandez, “Cartoonists Confront Political Correctness,” Editor & Publisher 127, no. 32 (August 6, 1994): 14–15. 23 See Alleen Pace Nilsen and Don L. F. Nilsen, “Political Cartoons: Zeitgeists and the Creation and Recycling of Satirical Symbols,” in Laughing Matters, Humor and American Politics in the Media Age, ed. Jody Baumgartner and Jonathan S. Morris (New York: Routledge, 2008), 68; Linus Abraham, “Effectiveness of Cartoons as a Uniquely Visual Medium for Orienting Social Issues,” Journalism & Communication Monographs 11, no. 2 (2009): 117–165; Janis L. Edwards, “Running in the Shadows in Campaign 2000, Candidate Metaphors in Editorial Cartoons,” American Behavioral Scientist 44 (2001): 2142; Patricia Gilmartin and Stanley D. Brunn, “The Representation of Women in Political Cartoons of the 1995 World Conference on Women,” Women’s Studies International Forum 21 (1998): 536. 24 See Alleen Pace Nilsen, “Sexism in the Media: Word and Image” (paper presented at the National Council of Teachers of English, November 25, 1977), 9; Eileen L. Zurbriggen and Aurora M. Sherman, “Race and Gender in the 2008 U.S. Election: A Content Analysis of Editorial Cartoons,” Analyses of Social Issues and Public Policy 10, no. 1 (2010): 223–247; Janis L. Edwards and C. A. McDonald, “Reading Hillary and Sarah: Contradictions of Feminism and Representation in 2008 Campaign Political Cartoons,” American Behavioral Scientist 54, no. 3 (2010): 313–329; Charlotte Templin, “Hillary Clinton as Threat to Gender Norms: Cartoon Images of the First Lady,” Journal of Communication Inquiry 23 (1999): 20–36; Center for Integration and Improvement of Journalism, “Images: A Photo or Cartoon Can Be as Bad a Thousand Words,” Newswatch (San Francisco, CA: CIIJ, 1994), 10. 25 Stephen R. Schmidt, “Effects of Humor on Sentence Memory,” Journal of Experimental Psychology: Learning, Memory, and Cognition 20 (1994): 953–967. 26 Yong Zhang, “Responses to Humorous Advertising: The Moderating Effect of Need for Cognition,” Journal of Advertising 25 (1996): 15–32. 27 Zurbriggen and Sherman, “Race and Gender in the 2008 U.S. Election.”

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Embodying Metaphors 28 Jack Nelson, “The Invisible Cultural Group: Images of Disability,” in Images That Injure, ed. Paul Lester (Westport, CT: Praeger, 1996), 120. 29 Beth A. Ferri and David J. Connor, Reading Resistance: Discourses of Exclusion in Desegregation & Inclusion Debates (New York: Peter Lang, 2006). 30 Rosemarie Garland-Thomson, “The Politics of Staring: Visual Rhetoricso Disability in Popular Photography,” in Disability Studies: Enabling the Humanities, ed. Sharon Snyder, Brenda Brueggemann and Rosemarie Garland-Thomson (New York: Modern Language Association of America, 2002), 75. 31 Edwards, “Running in the Shadows.” 32 Beth Haller, “Soldiers & Symbols: Images of Disabled Veterans in U.S. Political Cartoons” (paper presented at the fourth International Disability Studies Conference, Lancaster University, UK, September 3, 2008). 33 Lee Wilkens, “The Blind in the Media: A Vision of Stereotypes in Action,” in Images That Injure, ed. Paul M. Lester (Westport, CT: Praeger, 1996), 128–129. 34 Morton Keller, The Art and Politics of Thomas Nast (London: Oxford University Press, 1968). 35 “The Historic Elephant and Donkey,” New York Times, August 2, 1908, http://query.nytimes.com/mem/ archive-free/pdf?_r=1&res=9D07EFDB113EE033A25751C0A96E9C946997D6CF&oref=slogin. 36 Thomas Nast, “Schoolmaster Lincoln and His Boys,” Southern Illustrated News, January 31, 1863, www.abra hamlincolncartoons.info/SubPages/CartoonLarge.php?UniqueID=299. 37 Thomas Nast, “Dr. Arthur’s Prescriptions,” Harper’s Weekly, December 16, 1882, https://thomasnastcar toons.com/2014/02/11/dr-arthurs-prescriptions. 38 “The Historic Elephant and Donkey.” 39 David L. Lendt, Ding: The Life of Jay Norwood Darling (New York: Maecenas Press, 2000). 40 J. N. “Ding” Darling, “So Many People Are Asking, It Would Be Interesting to Know,” Des Moines Register, March 4, 1917, http://digital.lib.uiowa.edu/cdm/singleitem/collection/ding/id/550/rec/10. 41 Pat Oliphant, “Is This the Bus to Foreign Policy, Christopher?” Andrews McMeel Syndication, October 21, 1993, www.gocomics.com/patoliphant/1993/10/21. 42 Clay Bennett, “Iran’s Ahmadinejad—Mixed Nuts!” Christian Science Monitor (2006), www.strangepolitics. com/content/item/131203.html. 43 National Alliance of the Mentally Ill, Southwestern Pennsylvania, “Fight Stigma,” accessed July 13, 2011, www.namiswpa.org/content/fight_stigma.php. 44 National Alliance of the Mentally Ill, National Office, “Fight Stigma: Become a Stigma Buster,” accessed July 13, 2011, www.nami.org/template.cfm?section=fight_stigma. 45 Gary Varvel, “John Kerry’s Broken Leg,” Indianapolis Star, June 2, 2015, http://editorialcartoonists.com/ cartoon/display.cfm/142273/. 46 Terry Atlas and David Lerman, “Kerry’s Broken Leg Complicates Iran Talks as Deadline Looms,” Bloomberg News, May 31, 2015, www.bloomberg.com/news/articles/2015–05-31/kerry-suffers-leg-injury-in-bicycleaccident-in-france. 47 Roger Fischer, Them Damned Pictures: Explorations in American Political Cartoon Art (Bloomington, IN: Archon Books, 1996). 48 Stephen Hess and Sandy Northop, American Political Cartoons: The Evolution of a National Identity, 1754 –2010 (New Brunswick, NJ: Transaction Publishers, 2011), 13. 49 Paul Longmore and Lauri Umansky, The New Disability History: American Perspectives (New York: New York University Press, 2001), 18–19. 50 Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), 10. 51 David Hevey, “From Self-Love to the Picket Line: Strategies for Change in Disability Representation,” Disability, Handicap & Society 8, no. 4 (1993): 423–429. 52 Marilyn Dahl, “The Role of the Media in Promoting Images of Disability—Disability as Metaphor: The Evil Crip,” Canadian Journal of Communication 18, no. 1 (1993): 1. 53 George Lakoff and Mark Johnson, Metaphors We Live By (Chicago: University of Chicago Press, 1980). 54 Carrie Sandahl, “Ahhhh Freak Out! Metaphors of Disability and Femaleness in Performance,” Theater Topics 9, no. 1, (March 1999): 14. 55 Marc Maurer, “Of Mr. Magoo, Disney, and the National Federation of the Blind,” NFB website, 1998, https://nfb.org/Images/nfb/Publications/bm/bm98/bm980202.htm. 56 Kenny Fries, “Introduction,” to Staring back: The Disability Experience in America from the Inside Out, ed. Kenny Fries (New York: Penguin, 1997), 6. 57 Michael Oliver, The Politics of Disablement (Basingstoke, UK: Palgrave Macmillan and St Martin’s Press, 1990), cited in Disability, Culture, Identity, ed. Sheila Riddell and Nick Watson (London: Routledge, 2003), 3.

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Beth Haller 58 Kali, “I Am Not Your Metaphor,” Brilliant Mind Broken Body blog, October 17, 2010, http://brilliantmind brokenbody.wordpress.com/2010/10/17/i-am-not-your-metaphor. 59 Kali, “I Am Not Your Metaphor.” 60 John Morreall, Taking Laughter Seriously (Albany, NY: SUNY Press, 1983). 61 Bruce Baum, “Humor and Disability,” The Bridge 8, no. 4 (1998): 3. 62 Miss Mary Max, “Disability as Metaphor,” Blog post, July 17, 2010, http://missmarymax.wordpress.com/ 2010/07/17/disability-as-metaphor/. 63 Miss Mary Max, “Disability as Metaphor.” 64 Kali, “I Am Not Your Metaphor.” 65 Miss Mary Max, “Disability as Metaphor.” 66 John Callahan, Will the Real John Callahan Please Stand Up? (New York: William Morrow, 1998); John Callahan, Don’t Worry, He Won’t Get Far on Foot (New York: Vintage Books, 1990). 67 Jenny Corbett, Bad-Mouthing: The Language of Special Needs (London: Falmer Press, 1996), 53. 68 Kara Shultz and Darla Germeroth, “Should We Laugh or Should We Cry? John Callahan’s Humor as a Tool to Change Societal Attitudes Toward Disability,” Howard Journal of Communications 9 (1998): 242. 69 Sharon Wachsler, “Sick Humor Postcards,” accessed June 10, 2002, www.sickhumorpostcards.com. 70 Donald C. Simmons, “Protest Humor! Folklorist Reaction to Prejudice,” American Journal of Psychiatry (1963): 567–570. 71 Scott Chambers, “The Joy of Mental Hygiene Cartoon,” Mouth (March 2001): 36–37. 72 Baum, “Humor and Disability,” 4. 73 Kathleen Tolan, “We Are Not A Metaphor,” American Theatre 18, no. 4 (April 2001): 20. 74 Tolan, “We Are Not A Metaphor,” 20. 75 Steve Brown, Investigating a Culture of Disability: Final Teport (Las Cruces, NM: Institute on Disability Culture, 1994), 10.

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12 RESISTING ERASURE Reading (Dis)Ability and Race in Speculative Media Sami Schalk

In recent years there has been a dramatic increase in representations of marginalized people in speculative media, an umbrella term for non-realist media including science fiction, fantasy, magical realism, alternative histories, ghost stories and horror. Historically, however, it has not been easy to find representations of racialized and/or disabled people in the genre, especially prior to the feminist and civil rights movements. In part, this is due to the fact that speculative media is typically set in futuristic, alternative or ideal worlds where the concerns and limits of the realist human bodymind1 are considered no longer relevant. In reading race and (dis)ability in speculative media, therefore, there are two major issues of erasure to address: first, the erasure of race and (dis)ability as social vectors of power, particularly via the absence of racialized and disabled characters; and second, the erasure of race and (dis)ability as analytics in critical interpretations of speculative media. By resisting erasure, scholars, writers, readers and fans of speculative media can be able to better incorporate, explore and understand the multiple intersecting and overlapping ways race and (dis)ability appear in and impact the creation and critical reception of speculative media representations. I use the term (dis)ability in the above paragraph to reference the overarching social system of power and privilege that benefits some bodyminds considered to have all or most socially expected abilities (the able-bodied/minded, non-disabled, etc.), while marginalizing and oppressing other bodyminds considered to lack key socially expected abilities (the disabled, impaired, etc.). I use the term (dis)ability because unlike race, which references a number of socially constructed racial categories, both privileged and oppressed (white/Caucasian, black/African American, Latino/a, Asian, Native American/indigenous, etc.), disability without the parenthetical marker merely references disability and impairment. Since there is no English language umbrella term in regard to disability and ability that might serve as an equivalent for sociopolitical terms like race, gender, class or sexuality, which each include several privileged and marginalized group labels, I use (dis)ability when referencing the larger social system and I use disability or ability individually when referencing those specific parts of the (dis)ability system. Other disability studies scholars use disability/ability or dis/ability to a similar effect. When it comes to reading speculative media, it is particularly important to have language to discuss not just disability, but also ability (including hyperability or “powers”) since much speculative media represents humans or other sentient beings, such as aliens, vampires, mutants and superhumans, who are capable of feats considered impossible in the realist world. Furthermore, (dis)ability as a social system may be different in non-realist contexts where the hierarchies of 137

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bodyminds—that is, the expectation, valuation and treatment of abilities, appearances and behaviors—are not the same as what exists in contemporary realist cultures. For example, in the Harry Potter series fantasy books and films where wizards exist, would those without the ability to access and use magic be considered disabled? Certainly the series depicts, at the very least, prejudice against so-called “muggles” and those born to muggle families. In worlds where different abilities and beings exist, it is likely that different hierarchies and oppressions will also operate. It is therefore useful to have language to address the role of disability and ability within these new hierarchies even when disability and ability might have varied meanings in different speculative media settings. Many critical race scholars and, more recently, several disability studies scholars have critiqued speculative media for its failure to critically engage race and (dis)ability as part of its non-realist worlds.2 In particular, speculative media has a history of leaving out racialized and disabled characters under the assumption that in the future and in other non-realist worlds, such as utopias, the categories of race and (dis)ability as we know them no longer matter because racism and ableism do not exist.3 Robert Scholes and Eric S. Rabkin write that “because of their orientation toward the future, science fiction writers frequently assumed that America’s major problem in this area—black/white relations—would improve or even wither away.”4 A similar approach exists in speculative media regarding disability via the assumption that in future or alternative worlds, technology will advance to a point where disability can be either completely prevented at birth or always cured after its occurrence. By representing worlds where racism and ableism do not exist—because race and (dis)ability as social categories no longer exist—speculative media not only, as Mark Bould argues, “avoids confronting the structures of [these oppressions] … and its own complicity in them,” but also tends to exclude people of color, disabled people and disabled people of color as full, complex characters.5 This erasure approach to issues of power, privilege and oppression, De Witt Kilgore argues, “enshrines white [non-disabled, heterosexual] masculinity, unmarked or troubled by culture … as the norm to which all ‘difference’ must assimilate.”6 The lack of characters of color in speculative media has been a concern for several major fan websites including the Black Science Fiction Society (blacksciencefictionsociety.com) and Nerds or Color (thenerdsofcolor.org). While racial diversity is still lacking in many ways, there has been significant and notable change in the genre in the past 50 years—particularly in speculative fictional literature. The same cannot be said—or at least not to the same extent—for disability. While the speculative media fan site, Fangs for the Fantasy (www.fangsforthefantasy.com), does occasionally include critiques of the representation of disability in speculative media, particularly the appearance of supercrips,7 there are only a few speculative media fan and artist communities that seem to regularly include disability as part of their vision of diversity, most notably WisCon, the annual feminist science fiction convention, which featured disability as the central topic in volume 7 of their WisCon Chronicles.8 Collectively, while characters of color are more likely to appear in speculative media than disabled characters, neither group is adequately—by which I mean on par with population statistics—represented, particularly in protagonist roles. These characters, when they do appear, are more likely to show up in fiction than in any other medium, though the recent films Mad Max: Fury Road and Fantastic Four and the Netflix television series Daredevil are important exceptions to this trend. Award-winning speculative fiction writer, Nalo Hopkinson, who represents a range of genders, sexualities, races, ethnicities, classes and disabilities in her work, writes that generally speculative film and television media “is some 30 years behind what’s happening in the literature; it’s still hung up on glorifying paramilitary regimes, whereas the range of political analysis in the written genre is much more varied.”9 Several scholars have also discussed the ways in which, in addition to the erasure of explicit representations of people of color and disabled people, ideas regarding race and (dis)ability are often abstracted into well-known speculative media tropes such as aliens (particularly alien 138

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invasions), robots, cyborgs, technologically enhanced or altered human bodies and disease epidemics.10 Critical race and disability studies scholars have argued that the erasure of race and (dis)ability in speculative media in terms of the lacuna of racialized and disabled characters is replicated in critical interpretations of texts when scholars and fans overlook the racial and abilitycentric overtones of these tropes. For example, Isiah Lavender argues that we can read cyborgs, robots and posthumans as “new racial forms” due to their treatment in non-realist worlds as servants or even slaves to humans, such as in David Brin’s Kiln People.11 Similarly, Katie Ellis writes that, “Both disability studies and science fiction are concerned with physical difference, body modification, environmental adaptation, medical research and notions of technological transcendence.”12 Critics are more likely overall, however, to note discourses of race in a representation than discourses of (dis)ability. For example, many viewers and critics read James Cameron’s Avatar as a clear representation of indigenous/non-white people being colonized by the technologically advanced Americans, but few discussed the role of (dis)ability in the text beyond simply mentioning the disability status of the main character.13 In his 2009 “thumbs-up” review of the film—a time when the United States was still engaged in the “War on Terror” in Iraq—Roger Ebert notes how the American ex-military characters attack Pandora and its inhabitants even though they pose no threat to the Americans beyond living on land prime for resource excavation. Ebert suggests that viewers “are free to find this an allegory about contemporary politics. Cameron obviously does.”14 Ebert does not, however, discuss disability beyond noting that the central character, Jake Sully, is a white, male, veteran with paraplegia who is, in part, motivated by the desire to get access to the funds for an expensive surgery to “fix” his legs. What most critics do not discuss is how the majority of the film represents Jake in his avatar’s hyper-able body, not his disabled, human one. At the end of the film, Jake attempts to leave his human body entirely and become permanently one with his avatar—an attempt that is assumed to be successful, though the result is not depicted. In a review of the film for the Disability Studies Quarterly, Sara Palmer argues that Avatar is about compulsory able-bodiedness—that drive toward increased ability at all costs due to our cultural inability to imagine the positive aspects of living with a disability.15 In this one example alone, it’s possible to understand how both race and (dis)ability can be central concerns in a speculative media representation in indirect or at least less explicit ways than just having a racial minority or disabled protagonist. The scholarly work to reveal how concerns with race and (dis)ability thematically permeate speculative media also demonstrates the importance of reading bodyminds within the context of their speculative fictional worlds. In speculative media, race and (dis)ability may not have the same meanings and markers as they do in realist contexts. The term defamiliarization refers to the way that non-realist media takes concepts from the realist world, such as disability, blackness or womanhood and adjusts them slightly in order to urge audience members to think more critically about these categories. Defamiliarization emerges in part from science fiction scholar Dark Suvin’s term “cognitive estrangement” that refers to the ways in which science fiction estranges or distances readers from their knowledge and assumptions about what constitutes reality in order to move them to question those very assumptions.16 As Nalco Hopkinson puts it, speculative media can “warp the mirror, and thus impel the reader to view differently things that they’ve taken for granted.”17 As a result of defamiliarization, audience members and scholars of speculative media must consider how to identify systems of race and (dis)ability in non-realist worlds—including who is privileged within these defamiliarized systems and who is oppressed. Is Mr. Spock a racial minority on Star Trek because he is mixed-species (human-Vulcan) even though Lieutenant Commander Geordie La Forge is racialized as a black man in ways we recognize in contemporary culture? Do we consider La Forge to be disabled because he is blind (a contemporary realist 139

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disability) or do we consider him non-disabled since his blindness does not limit him physically or socially due to technological devices (initially VISOR in the television series and first film, then prosthetic implants in the later films) that actually allow him to see and see better than the average human? Is Marvel Comic’s the Thing disabled due to his radiation exposure that resulted in superhuman strength and size, but an unusual, stigmatized appearance?18 Are the X-Men racial minorities, people with disabilities or something else entirely? Reading (dis)ability and race in speculative media requires understanding these categories as socially constructed and therefore mutable. That is, in order to fully understand the ways in which concerns with (dis)ability and race get expressed in speculative media, readers, viewers and critics must be willing to look for expressions and methods of oppression and marginalization not immediately recognizable as racism and ableism in contemporary realist terms. In addition to the problems with the erasure of (dis)ability and race in speculative media through lack of disabled and racialized characters and overlooking how (dis)ability and race can be defamiliarized into seemingly unrelated concerns, when it comes to interpretation of speculative media, there is also the danger of additional erasure through the conflation of race and (dis) ability in the analysis of representations. Due to speculative media’s defamiliarization of social categories, there are times in which it is possible to interpret a representation as being about race and/or (dis)ability. I emphasize and/or here because although I argue that it is important to read these defamiliarized representations as about both (dis)ability and race (or about both ableism and racism) as well as the relationship between these terms, more often than not, scholars interpret these speculative media representations as being about only one or the other. For example, Andrew Niccol’s Gattaca is a speculative film set in a near-future world in which genetic testing determines what jobs certain humans are permitted to perform and where genetic engineering gives people a lifetime of advantages, social and otherwise. Race and science fiction scholar Isiah Lavender insists that in a society that “discriminates against genetic makeup in contrast to race or gender. Genoism stands for racism.”19 Disability studies scholar Helen Meekosha, however, argues that Gattaca “could be seen as a film which confronts disability more directly [than other futuristic science fiction films]—through the theme again of genetic engineering.”20 Both scholars insist that the film’s representation of discrimination based upon genetics is representative of racism or ableism in contemporary society. Neither offers the possibility that the representation of genetic testing and engineering in this speculative fiction future is inextricably connected to concerns of both race and (dis)ability. Considering the history of eugenics in Western cultures, it is possible to read the selection of particular genetic traits deemed desirable (positive eugenics) and the elimination of other genetic traits deemed undesirable (negative eugenics) in Gattaca as being deeply embedded in a legacy of medicalized hierarchies of bodyminds based upon perceived racial and (dis)ability divisions— among others. Flexible eugenic categories such as “feeblemindedness” were commonly used as rationale for the sterilization of certain individuals, however, feeblemindedness in particular was a label typically indicative of a failure to perform proper racial, gender, class and sexuality behaviors.21 This failure to perform to these racial, gender, class and sexuality expectations of the period was then deemed a medical pathology—or impairment—of the bodymind. Concerns with genetics, therefore, have never been just about race or just about (dis)ability, but an imbrication of both terms and more. Lavender and Meekosha’s readings of Gattaca, therefore, are indicative examples of the tendency toward an either/or move in critical analysis of speculative media in which a text is either primarily (if not exclusively) about (dis)ability or race. This type of either/or reading often results in the conflation of race and (dis)ability, typically prioritizing one at the expense of another. This issue is similar to discussions in disability, race, gender and sexuality studies about the problems with oppression analogies in which, for example, sexism is compared to racism or ableism compared to 140

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homophobia. These comparisons, while often an attempt to create connections between different marginalized groups, often end up both collapsing important material differences between various forms of oppression and erasing the experiences of those who experience multiple kinds of intersecting oppressions, such as women of color and disabled queer people.22 While critical race and disability studies scholars have worked to draw attention to how issues of race and (dis)ability, of racism and ableism, play out in speculative media, there is more work to be done. There is a need to develop ways of reading non-explicit representations as related to both (dis)ability and race, due to the mutual constitution of these terms, rather than arguing for the priority of one over the other in a text. Defamiliarization of realist concepts and categories in speculative media means that a text can draw upon aspects of multiple recognizable social categories, concepts and histories and combine them into a single representation. As a result, speculative media figures such as aliens, robots and vampires as well as speculative media tropes such as time/space travel, body modifications and magic/superhuman powers can allude to multiple social systems of privilege and oppression at once without being directly or exclusively about any single category, issue or concern. For example, earlier I posed the question: Are the X-Men racial minorities, people with disabilities or something else entirely? Several scholars have made arguments about the ways in which we can read the X-Men in their various comic, television and film manifestations as symbols for different contemporary minority identity groups. To demonstrate my point about the importance of reading both race and (dis)ability as interrelated concepts in speculative media, I will provide a more extended engagement with the X-Men example here. The X-Men are a group of genetically altered/advanced humans who have a variety of extraordinary differences in ability and occasionally appearance as well. The most well-known of these figures include the protagonist leader Professor Xavier, who is telepathic, and the antagonist leader Magneto, who controls magnetic fields. Professor Xavier’s X-Men, including Storm, Wolverine, Cyclops, Jean Gray, Rogue and others, team up against Magneto’s Brotherhood of Evil Mutants who seek to overpower, if not destroy humankind—before humankind destroys them. The battles between these two groups—literally and ideologically—represent the center of much of the X-Men series across its multiple media iterations. Scholars have read the X-Men franchise in a variety of ways. Lawrence Baron reads the X-Men as symbolic of Jewish ethnic identity in America, while Matthew Diebler interprets the characters as representative of racial minority identity politics more broadly.23 Michael J. Lecker, however, insists on reading the X-Men as symbolic of queer youth, while Ramona Ilea interprets the series as a representation of disability and disability rights politics.24 Is one of these interpretations more correct than the others? When reading the textual evidence for each of these analyses together, it is clear that each interpretation for one marginalized group is also applicable to other groups in various ways. In regard to ethnicity, the origin story of Magneto clearly locates him as a survivor of the Holocaust and this experience undergirds Magneto’s distrust of humans, particularly the attempt to have all mutants registered with the government.25 The representation of registering and monitoring the activities of a minority population in the X-Men series—and the potential impact of such surveillance—gestures toward not only the Holocaust, but also McCarthyism and the FBI’s tracking of the leaders of civil rights, radical and other oppositional groups in the United States and abroad. In regard to race, scholars have read the differing approaches of Professor X and Magneto as analogous to the non-violent, accommodation/assimilationist approaches of Dr. Martin Luther King, Jr. and the Southern Christian Leadership Conference versus the (sometimes) violent, militant, separatist approaches of Malcom X, the Nation of Islam and the Black Panthers.26 However, while this comparison is apt, it is not limited to race or blackness. The differences in potential approaches for gaining civil rights in terms of conservative, liberal or radical tactics have been an issue for nearly all marginalized groups including feminists, lesbian, bisexual, gay and queer groups and people with disabilities. 141

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In his queer reading of the series, Lecker suggests that the X-Men can be read as representative of queer youth because, similar to sexuality minorities, the mutants are born with their difference (mirroring the rhetoric of sexuality not being a choice), typically into non-mutant families who do not understand, are frightened by or reject their children’s differences, which tend to emerge around puberty.27 This familial reaction often causes self-hatred or isolation in mutants before they find connection and inspiration in non-biological mutant communities with adult mutants, which Lecker compares to the internalized queerphobia of queer youth who seek queer adult role models outside of their typically heterosexual families and communities of origin.28 Even P. Andrew Miller, who suggests overall that the X-Men’s mutants “can be seen as metaphors for any number of minority or marginalized groups,” writes that a “homosexual reading … seems the best fit to the mutant metaphor”29 [emphasis added]. The evidence for this reading, however, can also apply to other marginalized groups. People with disabilities often come from primarily non-disabled families and communities and this can also lead to isolation, attempts to hide or downplay difference, internalized ableism and the need for non-biological adult role models. A similar argument might also be made for transracial adoptees or mixed-race children raised in racially homogenous—especially white—communities. Finally, Ilea argues that the disagreement among mutants about the desirability of a cure can be read as a metaphor for debates about medical approaches to treating and/or “curing” disabilities. In the X-Men series this dispute is represented as particularly dividing mutants with more desirable or controllable powers, who can pass in appearance as human and who generally reject a cure, from mutants with less useful or controllable powers, who cannot pass in appearance as human and who generally welcome a cure. While Ilea does make a brief reference to passing as a concern in African American and sexual minority communities, she nonetheless insists upon the particularity of disability in interpreting this X-Men plotline. Lecker, however, claims that this reference to passing is indicative of the queerness of the series.30 Yet again, despite the strong connection to disability in this part of the X-Men series, the idea of a cure or treatment is also historically and contemporarily pertinent for sexual and gender minorities —such as lesbian, gay and transgendered people—and for racial and ethnic minorities and women who have a history of being medically pathologized in the name of oppression and discrimination.31 As Richard Reynolds suggests then, the X-Men might be read as “a parable of the alienation of any minority.”32 While each of these discussed readings is interesting and important, I’d like to suggest that their overlap allows for another interpretation to emerge. In addition to being symbolic of discrimination more broadly, the evidence discussed above regarding specifically how mutants are marked and marginalized in the X-Men series also demonstrates the consistency of methods of oppression and Othering across different time periods and marginalized groups. The fact that, despite the de-familiarization of the categories of race, ethnicity, sexuality and (dis)ability through the representations of mutants, we can recognize so many contemporary and historically oppressed groups in a single—albeit long-lasting, complex and medium-crossing—non-realist world seems far more interesting in regard to the possibilities of speculative media than any attempt to definitively state what group the X-Men primarily or exclusively represent. By reading the X-Men series more broadly as symbolic of the relationship between oppressions and the mutual constitution of marginalized identity categories, we can begin to understand how speculative media generally can provide insights into the nuanced relationship of race and (dis)ability (as well as the relationship of these social systems to gender, sexuality and class) by forcing us outside of our realist, normative expectations of these categories. Tracing the relationship between (dis) ability and race (and other social systems) within the defamiliarized representations of speculative media resists the erasure of these categories that has typically occurred in much speculative media representations and speculative media scholarship. 142

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Conclusion Speculative media is a broad umbrella category that includes any non-realist representation such as science fiction, fantasy, magical realism, ghost stories, horror, futuristic tales and alternative histories. By removing the reader or viewer from reality, speculative media allows us to imagine infinite possibilities—both desirable and frightening ones—in order to comment upon, challenge or critique contemporary realist concerns. Marie Jakober writes that speculative media can “make us think, make us question, make us wonder what is, and what is not, changeable” in our world.33 Historically, speculative media has tended to erase (dis)ability and race through the lack of racial minority and disabled characters. Scholarship on speculative media has often reinforced this erasure by taking the representations of “color-blind” and disability-free worlds at face value rather than interrogating how certain speculative media figures and tropes, such as aliens, disease outbreaks and mutants, are often symbolic of discourses and histories of race and (dis)ability. Furthermore, critical race and disability studies scholars have also perpetuated the erasure of the role of (dis)ability and race in speculative media by conflating these categories in order to claim the primacy of one over the other rather than arguing for an understanding of these terms as mutually constitutive. It is important to note that there has been a slow, yet significant shift in both speculative media representations and the scholarship on these texts, though more in regard to race than (dis)ability. There are an increasing number of writers from marginalized groups producing new speculative media and many of these individuals have created the similarly increased number of disabled and racial minority characters in speculative literature, film and television, including occasionally disabled racial minority characters such as Lauren Olamina in Octavia E. Butler’s Parable of the Sower and Parable of the Talents and Cameron Hicks and Rachel Pirzad in the short-lived Syfy series Alphas.34 Recent anthologies, such as Octavia’s Brood and Accessing the Future are further examples of the increased presence of disabled people, people of color and disabled people of color in speculative fiction in particular.35 Additionally, there is a growing body of scholarship on race in speculative media, including key collections such as Marleen S. Barr’s Afro-Future Females: Black Writers Chart Science Fiction’s Newest New-Wave Trajectory and Sandra Jackson and Julie E. Moody-Freeman’s The Black Imagination: Science Fiction, Futurism and the Speculative as well as several notable monographs.36 In contrast, the scholarship on (dis)ability in speculative media is only just emerging, such as in Kathryn Allan’s anthology Disability in Science Fiction: Representations of Technology as Cure and Angela Smith’s monograph Hideous Progeny: Disability, Eugenics, and Classic Horror Cinema.37 More work in these areas needs to be done, particularly in regard to the fantasy and magical realism sub-genres since the vast majority of work on race and (dis)ability in speculative media has focused on science fiction and futuristic representations. Continued conversations between scholars of (dis)ability, race and speculative media will allow us to understand the role of these social systems in the genre as well as highlight the work of authors, writers and directors who are attempting to better incorporate and engage race and (dis) ability. Many have written about the ways in which speculative media allows for imagining alternative worlds and how this very imagining is particularly important for those who have been marginalized and oppressed historically and contemporarily, as groups and as individuals. In response to the question, “What good is science fiction to Black people?” Octavia E. Butler responds with illuminating questions of her own: What good is any literature to Black people? What good is science fiction’s thinking about the present, the future and the past? What good is its tendency to warn or to consider alternative ways of thinking and doing? What good is its examination of

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the possible effects of science and technology, or social organization and political direction?38 Her questions, I believe, apply broadly. As a genre that typically considers itself progressive and subversive, speculative media is ripe for interesting, thought-provoking representations of (dis) ability and race that resist the ableist and racist norms of contemporary culture. However, the producers of these alternate worlds are still steeped in the many social systems of oppression currently operating in this world. As a result, representations that conform to oppressive norms in some fashion are nearly inescapable even when, as discussed above, human figures don’t appear in a representation at all. Discourses of race, (dis)ability and other social systems can be abstracted into a variety of speculative media figures and tropes. By continuing to identify and discuss how these systems play out in speculative media, therefore, scholars and readers, audience members and fans can better chart the role of (dis)ability and race in this genre, resisting erasure and moving toward a deeper understanding of the mutually constitutive and stubborn role of racism and ableism in our world(s) and imaginations.

Notes 1 I use this term after Margaret Price who writes that bodymind should be considered a materialist feminist disability studies concept that refers to “the imbrication (not just the combination) of the entities usually called ‘body’ and ‘mind.’” See Margaret Price. “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (2015): 270. 2 Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008), 7; Ria Cheyne. “‘She Was Born a Thing’: Disability, the Cyborg and the Posthuman in Anne McCaffrey’s the Ship Who Sang,” Journal of Modern Literature 36, no. 3 (2013): 148; Samuel R. Delany, “Racism and Science Fiction,” New York Review of Science Fiction, no. 120 (1998), www.nyrsf.com/racism-and-science-fiction-. html; Sharon DeGraw, The Subject of Race in American Science Fiction, Literary Criticism and Cultural Theory (New York: Routledge, 2007); De Witt Douglas Kilgore, Astrofuturism: Science, Race, and Visions of Utopia in Space (Philadelphia: University of Pennsylvania Press, 2003); Johnson Cheu, “De-GeneErates, Replicants and Other Aliens: (Re)Defining Disability in Futuristic Film,” in Disability/Postmodernity: Embodying Disability Theory, ed. Mairian Corker and Tom Shakespeare (London: Continuum, 2002): 198–212. 3 As Nickianne Moody notes, cyberpunk texts are an important exception to this statement because cyberpunk often features disabled characters and concerns with changes in expectations of ability. Nickianne Moody, “Untapped Potential: The Representation of Disability/Special Ability in the Cyberpunk Workforce,” Convergence: The International Journal of Research into New Media Technologies 3, no. 3 (1997): 90–105. 4 Robert Scholes and Eric S. Rabkin, Science Fiction: History, Science, Vision (New York: Oxford University Press, 1977), 188. 5 Mark Bould, “The Ships Landed Long Ago: Afrofuturism and Black Sf,” Science Fiction Studies 34, no. 2 (2007): 180. 6 Kilgore, Astrofuturism, 231. 7 “Supercrip” is a term for representations of supposedly exceptional people with disabilities who are often lauded simply because their achievements exceed cultural expectations for people with disabilities. See Sami Schalk, “Reevaluating the Supercrip,” Journal of Literary & Cultural Disability Studies 10, no. 1 (2016): 71–86. 8 JoSelle Vanderhooft, ed. Shattering Ableist Narratives, WisCon Chronicles, vol. 7 (Seattle, WA: Aqueduct Press, 2013). 9 Hopkinson quoted in Nancy Batty, “‘Caught by a … Genre’: An Interview with Nalo Hopkinson,” ARIEL: A Review of International English Literature 33, no. 1 (2002): 193. 10 Isiah Lavender, Race in American Science Fiction (Bloomington: Indiana University Press, 2011); Michael Bérubé, “Disability and Narrative,” PMLA 120, no. 2 (2005): 568–569; Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 20. 11 Lavender, Race in American Science Fiction, 17; David Brin, Kiln People, 1st ed. (New York: Tor, 2002).

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12 Katie Ellis, Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance, Cultural Politics of Media and Popular Culture (Burlington, VT: Ashgate, 2015), 64. See also, Cheyne, “She Was Born a Thing”; Kafer, Feminist, Queer, Crip, 103–128. 13 For other critical discussions of disability in Avatar, see Ellis, Disability and Popular Culture, 71–77; Dana Fore, “The Tracks of Sully’s Tears: Disability in James Cameron’s Avatar,” Jump Cut: A Review of Contemporary Media, no. 53 (2011), www.ejumpcut.org/archive/jc53.2011/foreAvatar. 14 Roger Ebert, “Avatar” (2009), www.rogerebert.com/reviews/avatar-2009. 15 Sara Palmer, “Old, New, Borrowed and Blue: Compulsory Able-Bodiedness and Whiteness in Avatar,” Disability Studies Quarterly 31, no. 1 (2011), http://dsq-sds.org/article/view/1353/1473. 16 Darko Suvin, Metamorphoses of Science Fiction: On the Poetics and History of a Literary Genre (New Haven, CT: Yale University Press, 1979), 3–15; See also Perry Nodelman, “The Cognitive Estrangement of Darko Suvin,” Children’s Literature Association Quarterly 5, no. 4 (1981): 24–27. 17 Dianne D. Glave, “An Interview with Nalo Hopkinson,” Callaloo 26, no. 1 (2003): 149. 18 José Alaniz, “Supercrip: Disability and the Silver Age Superhero,” International Journal of Comic Art 6, no. 2 (2004): 87–96. 19 Lavender, Race in American Science Fiction, 128. 20 Helen Meekosha, “Superchicks, Clones, Cyborgs, and Cripples: Cinema and Messages of Bodily Transformations,” Social Alternatives 18, no. 1 (1999): 27. 21 Wendy Kline, Building a Better Race: Gender, Sexuality, and Eugenics from the Turn of the Century to the Baby Boom (Berkeley: University of California Press, 2001); Anna Stubblefield, “‘Beyond the Pale’: Tainted Whiteness, Cognitive Disability, and Eugenic Sterilization,” Hypatia 22, no. 2 (2007): 162–181. 22 Angela Y. Davis, Women, Race & Class (New York: Vintage Books, 1983), 33; Ellen Samuels, “My Body, My Closet: Invisible Disability and the Limits of Coming-out Discourse,” GLQ 9, no. 1–2 (2003): 233–255. 23 Lawrence Baron, “X-Men as J Men: The Jewish Subtext of a Comic Book Movie,” Shofar 1 (2003): 44–52; Matthew Diebler, “‘I’m Not One of Them Anymore’: Marvel’s X-Men and the Loss of Minority (Racial) Identity,” International Journal of Comic Art 8, no. 2 (2006): 406–413. 24 Michael J. Lecker, “‘Why Can’t I Be Just Like Everyone Else?’: A Queer Reading of the X-Men,” International Journal of Comic Art 9, no. 1 (2007): 679–687; Ramona Ilea, “The Mutant Cure of Social Change: Debating Disability,” in X-Men and Philosophy: Astonishing Insight and Uncanny Argument in the Mutant X-Verse, ed. Rebecca Housel and J. Jeremy Wisnewski (New York: John Wiley & Sons, 2009): 170–183. 25 Baron, “X-Men as J Men,” 46, 50. 26 John M. Trushell, “American Dreams of Mutants: The X-Men—‘Pulp’ Fiction, Science Fiction, and Superheroes,” Journal of Popular Culture 38, no. 1 (2004): 154; Baron, “X-Men as J Men,” 48; P. Andrew Miller, “Mutants, Metaphor, and Marginalism: What X-Actly Do the X-Men Stand For?” Journal of the Fantastic in the Arts 13, no. 3 (2003): 284. 27 Lecker, “Why Can’t I Be Just Like Everyone Else?” 681–682. 28 Lecker, “Why Can’t I Be Just Like Everyone Else?” 682–684. 29 Miller, “Mutants, Metaphor, and Marginalism” 283, 285; emphasis added. 30 Lecker, “Why Can’t I Be Just Like Everyone Else?” 685. 31 Douglas Baynton, “Disability and the Justification of Inequality in American History,” in The New Disability History: American Perspectives, ed. Paul Longmore and Lauri Umansky (New York: New York University Press, 2001) 33–57. 32 Richard Reynolds, Super Heroes: A Modern Mythology, Batsford Cultural Studies (London: B. T. Batsford, 1992), 79. 33 Marie Jakober, “The Continuum of Meaning: A Reflection on Speculative Fiction and Society,” in The Influence of Imagination: Essays on Science Fiction and Fantasy as Agents of Social Change, ed. Lee Easton and Randy Schroeder (Jefferson, NC: McFarland & Company, 2008), 30. 34 Octavia E. Butler, Parable of the Sower (New York: Grand Central Publishing, 2007); Octavia E. Butler, Parable of the Talents (New York: Warner Books, 2000); Zak Penn and Michael Karnow, Alphas (Syfy, 2011–2012). 35 Walidah Imarisha and Adrienne Marie Brown, eds., Octavia’s Brood (Oakland, CA: AK Press, 2015); Djibril Al-Ayad and Kathryn Allan, eds., Accessing the Future (Futurefire.net Publishing, 2015). 36 Marleen S. Barr, Afro-Future Females: Black Writers Chart Science Fiction’s Newest New-Wave Trajectory (Columbus: Ohio State University Press, 2008); Sandra Jackson and Julie E. Moody-Freeman, The Black Imagination, Science Fiction, Futurism and the Speculative, Black Studies & Critical Thinking (New York: Peter Lang, 2011); Lavender, Race in American Science Fiction; André M. Carrington, Speculative Blackness:

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The Future of Race in Science Fiction (Minneapolis: University of Minnesota Press, 2016); Kilgore, Astrofuturism. 37 Kathryn Allan, Disability in Science Fiction: Representations of Technology as Cure (New York: Palgrave Macmillan, 2013); Angela M. Smith, Hideous Progeny: Disability, Eugenics, and Classic Horror Cinema, Film and Culture (New York: Columbia University Press, 2011). 38 Octavia E. Butler, Bloodchild and Other Stories, 2nd ed. (New York: Seven Stories Press, 2005), 134–135.

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PART II

Audience, Participation and Making Media

13 PRODUCERLY DISABILITY POPULAR CULTURE The Collision of Critical and Receptive Attitudes Katie Ellis

In January 2016, Danish toy giant Lego announced it was releasing a minifigure who used a wheelchair.1 Nine months earlier in April 2015, UK journalist, mother and person with a disability Rebecca Atkinson launched the #Toylikeme online community in the United Kingdom. Atkinson believed increasing disability representation in the toy box was an important initiative toward the full inclusion of people with disability in society: Thanks to the Disability Discrimination Act, disabled children can no longer be refused entry to toy shops, schools or soft play centres on the grounds of their wheelchair being a fire hazard or bothersome to other children. In terms of ramps, lifts and buildings constructed with equality in mind, the country has never been more accessible. But what about the rights of disabled children to be positively represented in the cultural sphere? To see their lives and experiences reflected in the media they consume?2 The group simultaneously targeted the major toy manufacturers Mattel, Playmobil and Lego while creating their own disabled toys and featuring them in the #toylikeme Facebook photo album. As #toylikeme gained momentum a number of toy manufacturers including Playmobil, Makies and Lottie Dolls pledged to create disabled toy lines. However Lego refused to officially respond. While their eventual disabled minifig announcement was widely celebrated by #toylikeme, it was not the first time in the online community’s short existence that Lego had dabbled with disability imagery. Lego had earlier released a new character named TURG as part of their Mixel range in June 2015. Described as “part frog, part chicken, part back-of-the-bus window-licker.”3 TURG was poorly received by #toylikeme and the broader disability community because in their view TURG was an ableist representation that perpetuated problematic descriptions of disability. The phrase “back-of-the-bus window-licker” has derogatory connotations and has historically been used to describe people with intellectual disabilities. Behind retard and spastic, it was voted the third most offensive disability-related word in a 2003 poll of people with disability by British disability website Ouch.4 Lego subsequently issued an apology explaining it was not their “intention at all” to offend. They removed the window-licker reference from TURG’s description and promised to “[look] at our processes to make sure this does not happen again.”5 149

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The following month they released a Duplo Community People set that included an elderly man being pushed in a grey wheelchair by a younger character. #toylikeme campaigners described the “grandfather-” style wheelchair figure as another disability-related blunder on par with the windowlicker gaffe.6 Meanwhile, members of the group were creating their own disabled Duplo and Lego figures, including wheelchair basketball players and Duplo characters with hearing aids and cochlear implants. A wheelchair Skate Park was submitted to Lego’s Community ideas and BrickQueen and BrickTitan created a YouTube tutorial about how to create a wheelchair Lego using existing minifig pieces.7 While these were the first Legos explicitly described as “disabled,” Lego has for a long time included representations of disability. A number of minifigures could be described as amputees including Cyborg, Darth Vader, Aitruvirus and Captain Redbeard.8 My primary goal in this chapter is offer a theory of disability and popular culture and illustrate the centrality of disability and popular culture to disability studies. Disability is a popular image in popular culture. It is an image that has been negatively appropriated by producers of popular culture and it is equally an image and experience people with disability have sought to reclaim through a passionate engagement with popular culture. Popular culture is an important site of disability politics. In their editor’s introduction to a special issue on disability and popular culture for the Review of Disability Studies, Holly Manaseri and Raphael Raphael propose the increasing media attention toward disability images and the experience of disability shows disability is both a “source of popular attention” and that disability itself is “created in the popular” through the social meanings attached to these representations.9 However, within disability studies the focus on popular culture has centered on subjective accounts of good and bad representations. Throughout this chapter I argue the discipline must move beyond this binary opposition because popular culture is used in different ways by different people. There are frequently changing instances of incorporation and resistance between a disability-inclusive culture and one that could be described as ableist. Often this tension occurs within the same text. Throughout the chapter I explore the ways different models of disability have embraced, omitted or rejected theoretical approaches to popular culture. As a discipline, disability studies has privileged the resistive potential of disability arts but neglected to discuss the progressive potential of disability popular culture. However, as I argue, these cultural forms do in some instances have the same goal. Popular culture is communicated via the media, they have become increasingly intertwined as the media embraces digital platforms. I begin this chapter with definitions of culture and popular culture. Following an overview of different theoretical approaches to popular culture I explore the ways different disciplinary models of disability take up or reject these debates. After a brief consideration of disability arts as a subversive cultural strategy, I introduce a producerly model of disability as a way to approach disability and popular culture. I first introduced this framework in my 2015 book Disability and Popular Culture.10 Producerly insights appear in both the social and cultural models of disability, for example Michael Oliver’s call for a cultural anthropology of disability and Sharon Snyder and David Mitchell’s observations that a space exists between a dominant disabling cultural image of disability as tragedy and a politicized disability subculture.11 While both the social and cultural model focus on the production of popular culture, increasingly people with disability are engaging in popular culture in ways that warrant a more in-depth consideration of the ways this group consumes popular culture.

Defining Culture and Popular Culture In his seminal book Understanding Popular Culture, John Fiske argues that “popular culture is made by the people.”12 Approaches to popular culture draw on several key ideas—ordinary people, tradition, taste, commercialization, the media and an opposition between popular and elite culture. As 150

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discussed in this book, the media help shape a range of economic, political, social, cultural, technological and attitudinal issues related to disability. Popular culture as a key feature of the media include film, television, magazines, advertising, sport, fashion, music, toys, social and participatory media and so much more. For Fiske, popular culture can invite both passive consumption and critical reception. Popular culture is uniquely positioned to invite a producerly interpretation—whereby (preferred) meanings reinforcing the dominant ideology are offered yet these are revealed to be ideologically vulnerable. Popular culture is a key site through which we learn about disability, and a reflection of how we as a society value disability. It is a site of tension as it becomes a site of both incorporation of dominant ableist culture and resistance towards that. In this way, popular culture is progressive rather than radical. The image of disability in popular culture has changed as our values about people with disability change. Yet within disability studies, popular culture is often presented as problematic. For example, in Disability Studies: An Interdisciplinary Introduction, Dan Goodley argues disability is often used as “a metaphor for sinister, evil, ungodly, lacking, brave, fragmented and unviable.”13 These negative associations with disability reflected and reinforced in popular texts, reflect “deep-seated cultural conflicts.”14 Goodley does not make a distinction between culture and popular culture here, indeed it would seem most cultural images of disability draw on problematic social attitudes which in turn further disable people. It is as likely an opera or great work of literature would present disability as sinister, evil, ungodly, lacking, brave, fragmented and unviable as it would be for a soap opera or comic book. However, whereas culture has a good reputation, popular culture has a bad reputation. It is often regarded as inferior, bad for us, morally corruptible and so influential that it could radically alter our behavior in detrimental ways. Culture is associated with intellectual thought and rational changes in behavior while popular culture is associated with emotions. In consideration of the ways popular culture is problematized against elite culture, Paul Bowman suggests that “popular culture was regarded not only as inferior but also as being a problem, and not only a problem but actually a field of degeneration, something culturally dangerous.”15 Max Horkheimer and Theodor Ardorno famously argued in the 1940s that popular culture creates cultural dupes who become slaves to consumption.16 Despite a number of commentators debating the elite verses popular, or indeed middlebrow and other varieties of culture divide, the dominance of this opposition continues. This is especially apparent in disability studies’ privileging of disability arts over popular culture. The view of popular culture as inferior, dangerous and evidence of cultural decline does not fit with the enthusiastic position of #toylikeme who argue disability must be included in popular culture. This group even went as far as to make their own toys, a practice that harks back to folk culture as culture of the common people. Their dis-abled toys operate as a form of culture jamming by taking mass-produced products and altering them to make a subversive statement. However, unlike other forms of culture jamming, the intention was not a critique of capitalist consumer massproduced culture but rather to encourage capitalist culture to recognize people with disability as part of the consumer market. This community sought to mark out and claim their differences through popular culture and recognized the transgressive potential of engaging with mass-produced products. #toylikeme follows a tradition that sees popular culture as a vehicle for critique, as a reflection of social change and something active audiences use to create new meanings. In their selfdescribed “manifesto” on the study of popular culture, Hop on Pop: The Politics and Pleasures of Popular Culture, Henry Jenkins, Tara McPherson and Jane Shattuc foreground the agency of the audience in making meaning and engaging passionately with popular culture and describe it as a site of both politics and pleasure.17 Yet the image of disability in popular culture has been consistently criticized for perpetuating damaging stereotypes of disability. However, these critiques focus on production, not consumption of popular culture. 151

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Popular Culture and the Social Model of Disability As other chapters in this volume outline, the social model of disability is premised on the distinction between disability and impairment and society’s role in the exclusion of people with disability. British social model disability theorists took a radical approach and drew on Marxist principles to argue disability is created in capitalist societies. Expectations around work conditions, living conditions and the institutionalization of people with disability combine to create a dominant view of disability “as an individual, medical problem and personal tragedy.”18 Vic Finkelstein identified shifting attitudes toward disability that could be directly attributed to changing working conditions from agrarian society to the industrial revolution, to a third stage characterized by enabling technological change—the Information Age.19 The early social modelists were largely concerned with how the economic system worked to create disability. The importance of culture to this system was recognized early on when Michael Oliver pointed towards cultural images of disability and impairment as a key determining factor of social disablement. Oliver identified a number of commonly occurring media and cultural images of disability that he believed presented people with disability as either “more than or less than human.”20 The more-than-human approach characterized disabled people as superheroes overcoming insurmountable odds while the less-than-human approach emphasized the tragedy associated with disability and presented disabled people as pathetic victims. Rarely, Oliver observed, were disabled people portrayed as “ordinary people doing ordinary things.”21 Representing people with disability as either more than or less than human significantly intensifies the social disablement of this group by offering a limited yet culturally ubiquitous image of disability. Disabling images of impairment were increasingly recognized in a number of media forms and social modelists began suggesting “more appropriate images.”22 As the social model gained momentum, concerns arose regarding its refusal to include all impairments under its brief. Critiques around the lack of consideration of impairment was also recognized as a serious flaw in the theory. Carol Thomas proposed a framework of impairment effects to acknowledge the ways impairment impacts on the lives of people with disability23 and Liz Crow suggested a “social model of impairment” in recognition that “fatigue, depression and chronic illness are constant facts of life for many of us.”24 For Crow, the lack of attention to impairment precluded important topics such as prenatal testing from social model analysis. Finally, Tom Shakespeare identified a lack of attention to culture and the cultural processes and representations through which disability is created and sustained as the social model’s fundamental flaw.25 In response to some of these criticisms, the cultural model of disability emerged in the late 1990s/early 2000s in the United States.

Popular Culture in the Cultural Model of Disability Influenced by the UK social model of disability, cultural studies disciplines, identity politics and civil rights movements, the cultural model claims a key difference to the social model in that it does not present disability as entirely created by social forces. Snyder and Mitchell identify a number of “cultural dislocations” of disability such as charity systems, institutions and asylums, academic disciplines, sheltered workshops and medical documentaries, which they argue have been set out on behalf of people with disability.26 These locations exist as spaces where people with disability are deposited against their will and further go against the well-being of this group. As Snyder and Mitchell explain, a cultural dislocation refers to “the degree to which disability results in a person’s active disenfranchisement from levels of participation and experience afforded to most other citizens.”27 Dislocations limit the freedoms of people with disability. This dislocation is evident in a number of popular culture media representations of, and sometimes purporting to be for, people with disability.28

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Significantly, the cultural model takes a different approach to the concept of impairment. Whereas the social model like the medical model presents disability (albeit differently defined) as a problem to be eradicated, the cultural model theorizes impairment as a politicized identity and opportunity for self-reflection. Snyder and Mitchell argue that whereas the social model overlooked the opportunity to theorize the intersection between disability and impairment, the cultural model recognizes impairment as both human variation and a socially mediated difference. In addition, the cultural model overtly recognizes the ways impairment can offer insight. Snyder and Mitchell observe a distance exists between the dominant cultural perception of disability as tragedy and the politicized disability subculture. I argue popular culture covers this distance through producerly models of disability. Before going on to explain the producerly model of disability it is important to first consider the role and function of the politicized disability subculture to which both the social and cultural models refer and its role in cultural production and shifting perceptions about disability.

Disability Arts as Disability Culture A number of disability theorists from both the social and cultural models of disability foreground the importance of the disability arts movement in fostering social change via cultural expression. Oliver argues disability arts could reverse inadequate and inauthentic mass media images of disability.29 However, for Oliver, artists must remain mindful of the influence of non-disabled medical professionals focused on art as therapy rather than communication practice. Disability arts functions by offering representations of disability that make their audiences feel uncomfortable about social disablement, as opposed to the reassuring more- or less-than-human imagery of the mainstream media.30 Disability culture communicated via British disability arts movements is an oppositional site through which “mainstream representations of people with impairments—as victims of personal tragedy—are held to the light and revealed as hegemonic constructions within a disabling society.”31 Snyder and Mitchell identify arts and culture as an opportunity for disability studies to “reinvigorate its activist potential.”32 Performance art in particular offers a way to expose the entrapment of the dominating cultural dislocations. Tobin Siebers posits that art offers a critical resource for understanding what it means to be human and foregrounds the importance of a number of disabled artists who, through challenging imagery disrupt conventional notions of the healthy body.33 Popular culture emerges from the complex interaction between mass culture, elite culture, avantgarde arts, prevailing social values and commercial interests. For example, US toy company Mattel released Share a Smile Becky, colloquially known as “wheelchair barbie” in 1996. While the doll was initially criticized by disability advocates for medicalizing and commercializing disability,34 it has now become an icon of disability identification with adults reflecting on the importance of this doll in terms of embracing a disability identity, of being exposed to a representation of disability in their formative years.35 However, despite Mattel’s claims that Becky signalled a new era of inclusion and diversity,36 Becky did not fit into the Barbie dreamhouse. Becky was discontinued arguably because it was too difficult to retrofit accessibility within the established Barbie world. Significantly, this issue continues to be discussed, a 2017 article addressing the discontinuation of Becky quoted disability blogger Karin Hitselberger as explaining that Becky illustrated an uncomfortable truth—“A lot of the ways we think about disabilities, we talk about ‘fixing disability,’ instead of focusing on ‘fixing society.’”37 This representation and debate regarding disability inclusion are an example of producerly popular culture. 153

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Disability and Producerly Popular Culture I propose a theory of producerly disability to argue people’s reception of popular culture exists in the gaps between dominant cultural constructions of disability as tragedy and the politicized disability subculture of disability arts. Indeed, criticisms of Becky back in the 1990s were cited as evidence of a growing disability advocacy movement unwilling to accept charity as their primary means of support and social inclusion.38 Fiske’s concept of the producerly text is useful to the analysis of disability and popular culture. The producerly text is an extension of Barthes’ readerly and writerly texts. The producerly text simultaneously functions as a complex interaction between fixed meanings and resistance towards these.39 The producerly text is the point at which critical and receptive attitudes collide. In addition to children’s toys, a producerly focus on disability popular culture invites a discussion about a number of important topics such as beauty, sexuality and the media. Just as #toylikeme initiated an energetic discussion among people with disability and their allies and eventually the mainstream media about the importance of disability representation in popular culture and specifically toys, when reality TV personality Kylie Jenner posed as a dominatrix/sex doll in several positions including in a wheelchair for Interview Magazine she received widespread criticism from both disability activists and the mainstream media. While the media were critical of Jenner’s use of the wheelchair as a “fashion accessory,”40 Hitselberger called for the conversation to go beyond Kylie Jenner and “whether it is okay for able-bodied people to use mobility aids and disability as edgy props to shock people.” As Hitselberger explained, we needed to talk about Jenner’s photoshoot because “real disabled people are still largely missing in media representation, especially media representation around beauty and sexuality.”41 While Jenner appeared edgy, sexy and cool in her photoshoot, in real life women with disabilities are treated as powerless, childlike, asexual and incapable of participating in decisions that affect their lives. The conversation Hitselberger called for took place as bloggers and people on Twitter began pointing out the ways they have been told their disability makes them unattractive or impossible to love.42 Or the ways people never look them in the eyes.43 The discussion reveals many people with disability believe asexuality has been forced upon them. Several women with disability offered their own “more authentic” recreations of the Jenner photo, posing in latex in their wheelchairs. The initial photoshoot is an example of a media and popular culture incorporation of disability into dominant ableist ideologies that exclude people with disability from media imagery and perpetuate beliefs that position disability outside of beauty and sexuality. However, the widespread conversation across social media, including on mainstream media online articles and Twitter, Facebook and Instagram are a clear example of resistance. A similar conversation took place 30 years earlier when Ellen Stohl wrote to Hugh Hefner asking him to feature her in a Playboy photoshoot. Stohl, who had sustained a spinal cord injury, believed women with disabilities were denied a sexual identity and believed photos in Playboy could go some way in reversing that. However, the eventual images tended to obscure rather than celebrate Stohl’s disability. Nevertheless, the idea that a disabled woman could be depicted through discourses of beauty and sexuality were debated among Playboy staff (as reported in the news press), academics, advocates and people with disability via dedicated disability publications including the Disability Rag.44 Popular culture reflects what society values at a particular moment in time. Changing social positions, values and concerns are reflected in popular culture therefore making it a progressive representation. Despite arguments to the contrary, images of disability in popular culture have changed across time. To return to the example of disability toys with which I began this chapter, the availability and popularity of disability toys can be directly attributed to moments of social change. For example, during the 1970s, as disabled Vietnam veterans were returning from war,

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several amputee action figures became popular on the American toy market including GI Joe’s Mike Power Atomic Man, Ideal Toy’s J.J Armes and the Six Million Dollar Man transmedia toy offering. Similarly, in the 1990s as the Americans with Disabilities Act was enacted, Mattel released both Share a Smile Becky and American Sign Language Teacher Barbies. More recently, the Monster High toy collection depicts diversity in education via characters exhibiting traits associated with autism (Ghoulia Yelps) and a wheelchair-using mermaid (Finnegan Wake). While it is true these toys are mass produced, and are therefore an example of commercialization, people with disability have highlighted the importance of these toys in marking out and claiming their differences.45 However, as other chapters in this volume illustrate, for people with disability, popular culture remains a key site of their dislocation. Representations on television, for example, reinforce problematic disability tropes that continue to present disability as more or less than human and similarly reflect the historical shortcomings of the period in which they were produced. Yet increasingly, as other chapters in this volume have also argued, people with disability are increasingly turning to online discussion forums and social media to debate and discuss the problems with disability in popular culture.46 An important example of this occurred in 2016 when the film adaptation of JoJo Moyes’ bestselling book Me Before You was released. The disability community immediately and effectively launched a coordinated global protest against the book’s (and now film’s) disabling messages.

Conclusion Disability is surprisingly popular and has dominated popular culture in both stereotypical and subversive ways. Throughout this chapter I have explored the way key theorists in the social and cultural models of disability have approached the topic of popular culture as a subset of the media and culture. While both disciplines have made important contributions to this area, each group has approached the topic from a production perspective neglecting to consider the role of consumption and critical engagement. Both the social and cultural models as well as the disability arts movement reject the notion that disability is exclusively a tragedy or an individual’s medical problem. However, neither model has fully engaged with the pleasures of popular culture. A key challenge in engaging with popular culture for populations who have historically been excluded from production and representation is acknowledging both the frustrations regarding these exclusions as well as the pleasures these populations derive from pop culture. People with disabilities are one such group whose existence has been subjugated and silenced within mass media and popular culture. This group has been excluded from the production of mass culture, both in terms of representation in the media and further employment and production opportunities. Yet there are clear moments of resistance in the way disability figures in popular culture. Although disability theorists have most often focused on the incorporation of disability under the dominant framework, some elements escape control and reveal that a struggle does exist for greater social inclusion. Popular culture is not radical, it will not incite radical social change but it will reflect social change that has already taken place. While Oliver as a key proponent of the social model of disability calls for an in-depth analysis and anthropology of cultural images of disability, Snyder and Mitchell as exemplary of the cultural model recommend interrogation of the space between the dominant disabling cultural images of disability as tragedy and a politicized disability subculture. The consumption of popular culture is the space Snyder and Mitchell refer to, while people with disability, via online discussion on blogs and social media, are increasingly offering the anthropology of disability representation in the media Oliver called for in Understanding Disability. Producerly disability recognizes the way popular culture both incorporates and resists ableist ideology and allows people to mark out and claim their differences. 155

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Notes 1 Ben Beaumont-Thomas, “Lego Unveils First Ever Minifigure in Wheelchair,” Guardian, January 27, 2016, www.theguardian.com/culture/2016/jan/27/lego-unveils-disabled-minifigure-promobricks-nuremberg-toy-fair. 2 Rebecca Atkinson, “Why Do You Never See a Lego Mini-Figure with a Disability?” Guardian,www.the guardian.com/commentisfree/2015/dec/22/lego-mini-figure-disability-toy-disabled-children. 3 NewsBeat, “Lego Apologises for ‘Window Licker’ Toy,” BBC, www.bbc.co.uk/newsbeat/article/33079474/ lego-apologises-for-window-licker-toy. 4 Ouch Team, “Worst Words Vote,” Ouch! www.bbc.co.uk/ouch/play/worst-words-vote.shtml. 5 NewsBeat, “Lego Apologises for ‘Window Licker’ Toy.” 6 Rebecca Atkinson, “Lego Duplo Rile Parents, Children’s Charities and #Toylikeme Campaigners with Release of Stereotype Wheelchair Figure,” news release, July 29, 2015. 7 See www.youtube.com/watch?v=lW_WZw9u5xQ. 8 Graham, “Disability and Lego: Five Minifigures with Disabilities,” January 28, 2016, http://allaboutbricks. blogspot.com.au/2016/01/disability-and-lego-five-minifigures.html. 9 Holly Manaseri and Raphael Raphael, “Popular Culture and Disability,” Review of Disability Studies: An International Journal 10, no. 1 & 2 (2014): 6–7. 10 Katie Ellis, Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance (London: Routledge, 2015). 11 See Mike Oliver, The Politics of Disablement (Basingstoke, UK: Macmillan Education, 1990); Sharon Snyder and David Mitchell, Cultural Locations of Disability (Chicago: University of Chicago Press, 2006). 12 John Fiske, Understanding Popular Culture (New York: Routledge, [1989], 2010), 19. 13 Dan Goodley, Disability Studies: An Interdisciplinary Introduction (Los Angeles, CA: Sage, 2011), 15. 14 Goodley, Disability Studies, 15. 15 Paul Bowman, Culture and the Media (London: Palgrave Macmillan, 2012), 14. 16 Max Horkheimer and Theodor W. Adorno, Dialectic of Enlightenment, trans. John Cumming (New York: Continuum, 1972). 17 Henry Jenkins, Tara McPherson and Jane Shattuc, Hop on Pop: The Politics and Pleasures of Popular Culture (Durham, NC and London: Duke University Press, 2002). 18 Oliver, The Politics of Disablement, 25. 19 Vic Finkelstein, “Attitudes and Disabled People: Issues for Discussion” (New York: World Rehabilitation Fund, 1980), https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/finkelstein-attitudes.pdf. 20 Oliver, The Politics of Disablement, 61. 21 Oliver, The Politics of Disablement, 61. 22 For a representative example see Colin Barnes, “Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People” (Krumlin, UK: British Council of Organisations of Disabled People and Ryburn Publishing, 1992), https://disability-studies.leeds.ac.uk/wp-content/ uploads/sites/40/library/Barnes-disabling-imagery.pdf. 23 Carol Thomas, Female Forms: Experiencing and Understanding Disability (Buckingham, PA: Open University Press, 1999). 24 Liz Crow, “Including All Our Lives: Renewing the Social Model of Disability,” in Encounters with Strangers: Feminism and Disability, ed. Jenny Morris (London: Women’s Press, 1996), 55–72. 25 Tom Shakespeare. “Cultural Representation of Disabled People: Dustbins for Disavowal?” Disability & Society 9, no. 3 (1994): 283–299. 26 Snyder and Mitchell, Cultural Locations of Disability. 27 Snyder and Mitchell, Cultural Locations of Disability, 4. 28 See for example, criticisms of The Mighty website. 29 Oliver, The Politics of Disablement. 30 David Hevey, “Controlling Interests,” in Framed: Interrogating Disability in the Media, ed. Ann Pointon and Chris Davies (London: British Film Institute, 1997), 209–213. 31 Colin Cameron, “Tragic But Brave or Just Crips with Chips? Songs and Their Lyrics in the Disability Arts Movement in Britain,” Popular Music 28, no. 3 (2009), 381. 32 Snyder and Mitchell, Cultural Locations of Disability, 199. 33 Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press, 2010). 34 Douglas Martin, “Disability Culture: Eager to Bite the Hands That Would Feed Them,” New York Times, June 1, 1997. 35 Sarah Ismail, “Toys with Disabilities and Why They Matter,” Disability Horizons: A 21st Century View of Disability, May 30, 2013, http://disabilityhorizons.com/2013/05/toys-with-disabilities-and-why-theymatter.

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Producerly Disability Popular Culture 36 Mattel, “Come Share a Smile with a New Friend! Share a Smile™ Becky® Is the Barbie® Doll’s Cool New Friend,” May 16, 1997, www.prnewswire.com/news-releases/come-share-a-smile-with-a-newfriend-share-a-smiletm-beckyr-is-the-barbier-dolls-cool-new-friend-75616682.html. 37 Julia Franz, “Becky, Barbie’s Friend Who Uses a Wheelchair, Was Discontinued. Here’s Why,” April 9, 2017, www.pri.org/stories/2017-04-09/becky-barbies-wheelchair-bound-friend-was-discontinued-heres-why. 38 Martin, “Disability Culture.” 39 See Fiske, Understanding Popular Culture, chapter 5. 40 Julie Gerstein, “Kylie Jenner’s Wheelchair Mag Cover Blasted by Disability Advocates,” BuzzFeed, December 3, 2015, www.buzzfeed.com/juliegerstein/kylie-jenners-wheelchair-photos-are-slammed-for-beingableis#.idL8rVYbj. 41 Karin Hitselberger, “Why We Need to Talk About Kylie Jenner,” Claiming Crip, December 2, 2015, http://claimingcrip.blogspot.com.au/2015/12/why-we-need-to-talk-about-kylie-jenner.html. 42 Ophelia Brown, “Dear Kylie Jenner, My Wheelchair Isn’t a Limitation—It’s My Wings,” MTV, December 2, 2015, www.mtv.com/news/2618237/dear-kylie-jenner-my-wheelchair-isnt-a-limitation-its-my-wings. 43 Rachel Lubitz, “Woman Recreates Kylie Jenner’s ‘Trendy’ Wheelchair Shoot to Make It More ‘Authentic,’” Style. Mic, December 4, 2015, http://mic.com/articles/129696/woman-recreates-kylie-jenners-trendy-wheelchair-shoot-to-make-it-more-authentic#.6q1AfrGX0. 44 See Chapter 3 Katie Ellis, Disability and Popular Culture: Focusing Passion, Creating Community and Expressing Defiance (Farnham, UK: Ashgate, 2015). 45 marjol3in1977, “Ghoulia Yelps Autistic? What Do You Think?” February 1, 2012, blog post, www.mon sterhighdolls.com/forum/topics/ghoulia-yelps-autistic-what-do-you-think. 46 Debbie Rodan, Katie Ellis and Pia Lebeck, Disability, Obesity and Ageing: Popular Media Identifications (Farnham, UK: Ashgate, 2014); Katie, “Twin Peaks: Manufacturing Quirkiness … and Danger,” Space Crip, July 23, 2012, https://spacecrip.wordpress.com/tag/twin-peaks; lauredhel, “Law Order: ‘Dignity,’ Worth, and the Medical Model of Disability,” FWD/Forward (Feminists with Disabilities) for a Way Forward, October 29, 2009, http://disabledfeminists.com/2009/10/29/law-order-dignity-worth-and-the-medical-model-of-disability.

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14 THE BODIES OF FILM CLUB Disability, Identity and Empowerment Fiona Whittington-Walsh, with Kya Bezanson, Christian Burton, Jaci MacKendrick, Katie Miller, Emma Sawatzky and Colton Turner

Introduction “Each of us is different; we may learn or look different, but that doesn’t make us less human.”1 Characters with disabilities in film have historically been represented using several stereotypes.2 These stereotypes contribute to how society understands disability and include the following: criminal; evil and violent; pitiful and dependent; childlike and asexual; extraordinarily talented; comic relief; moral metaphors; and “better-off-dead.”3 Disability scholars maintain that these images of disability have been historically constructed from an ableist, or a non-disabled point of view where disability is represented as not normal and therefore people with disabilities are seen as somehow less than human.4 People with disabilities are also rarely included in the production of films either behind or in front of the camera.5 As with all categories of disability, there has been scholarly interest in film representation of people with intellectual disabilities.6 However, to date, there has not been a study that has included people with intellectual disabilities in analyzing film representations even though intellectual disability is a “popular” story line. Despite not being included in existing research, there is a large body of research that maintains that people with intellectual disabilities need to be involved in the documentation of their own lives.7 Barnes8 maintains that research involving people with disabilities needs to empower people through the actual research process. But how can we measure this? The Bodies of Film Club is a collaborative, participatory study9 that focuses on critically analyzing how movies portray disability. The most important aspect to this project is the inclusion of people with disabilities in the film analysis. The club consists of five young adults, who identify as having an intellectual and/or developmental disability, plus the principal researcher, a sociologist, a critical disability activist and the project’s research assistant.10 Once a week the club meets and watches a film that is chosen by all members. The critical analysis emerges as the group discusses the film in relation to their everyday lives. Moving beyond the scope of just film analysis, the Bodies of Film Club has emerged as a space to discuss issues important to the club such as the discrimination and lack of opportunities they experience. The relationship building that has emerged out of this project between all club members has transcended traditional research methodologies and will hopefully influence the way in which research about people with disabilities and research on film is conducted.

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Creating Connections Fiona Whittington-Walsh is currently chair of the Department of Sociology at Kwantlen Polytechnic University (KPU) in British Columbia, Canada and teaches a wide range of sociology courses. KPU is a special purpose, publicly funded, undergraduate teaching university that serves the Metro Vancouver Region and is scattered across four campuses in different city centers. It serves close to 18,000 students and offers a wide variety of programming ranging from citations to bachelor degrees. Kya Bezanson, Christian Burton, Katie Miller, Emma Sawatzky and Colton Turner are all alumni from KPU’s Access Program for People with Disabilities (APPD) in Langley British Columbia. The APPD program is a segregated employment-focused certificate program that strives to eradicate the numerous barriers people with intellectual disabilities face in the labor force. The students are generally those who would not meet the academic requirements of the wider university and have a wide range of learning abilities.11 One of the central features of this project is to create an environment where everyone feels comfortable in being who they are, including introducing themselves to the readers of this chapter. Even though all club participants experienced bullying and negative judgments throughout their lives, they want to make sure that readers know who they are. This process was done over several in-person club meetings through face-to-face group discussions, one-on-one interviews, posters and social media messages. This is a very important aspect to the research methodology: making sure there is a connection between the club and the readers. Kya is 20 years old and she is the club’s creative leader. She often organizes activities and questions for the club and has provided numerous videos and songs for the group to connect to the film discussions. Kya is very supportive of everyone’s feelings and generally can connect those feelings to her own experiences. She has also taken a very active role in the writing and editing of this chapter. Twenty years ago, I was born into a crappy house. My parents had a disability … and they didn’t look after me, I almost died. I have fetal alcohol syndrome. If I didn’t have the negative experiences with my birth family, then I wouldn’t be in my family now … My [new] family is mixed of blood children and foster/adopted children … I don’t like to see people get hurt … So I don’t really care what happens to me just really just as long as someone else doesn’t get hurt.12 Christian is 21 years old and has an extensive knowledge of films, history and world politics. The first time Fiona met Christian, in March 2015, he came to her assistance when she was having difficulty getting a DVD to work during a guest lecture to his APPD class. In addition to being a technophile, Christian has an incredible sense of humor, full of witty, sarcastic comments. He is both the club’s technical expert and fact checker. My disability is something strange. From the way I am, I learn slowly at things like reading, writing, fine motor skills and so on. My learning that is normal but with some to little help is like science, math and etc. … I am very good with technology. Lots of people have said I couldn’t do stuff but I’ve showed them wrong.13 Jaci MacKendrick is a graduate of the with Fiona, most significantly her mass disability. Jaci has been involved in this a young mother whose daughter often

sociology program at KPU and took numerous courses media course, which examined media representations of project as a research assistant since June 2014. Jaci is also accompanies her to the film club, providing the film is

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child friendly! Jaci is the club’s note taker. She meticulously takes notes while participating in the group discussions. Exploring the outdoors and how other people see the world have always been essential to my life. The best and worst times of my life have been accompanied by learning through other people’s experiences and through connecting with nature. These are values I hope to instil in my daughter.14 Katie is 21 years old and has an incredible spiritual energy. She helps set the tone for the meetings and can cheer people up with her great sense of humor. She has an impressive collection of dolls and toys from the gaming world that she often brings to the meetings and shares with the group. Katie loves werewolves and feels a connection to them. Katie is the emotional centre of the club. In grade 1 my parents were told that there was something wrong with their girl—get her checked. Who would I be without my disability? I don’t want to die or anything, but sometimes … my disability is a curse. I want [you] to know who I really am and why I’m this way. Just like werewolves, who didn’t choose to have panic attacks with full moons, we didn’t chose to have disabilities. We are good people but [it sometimes] is hard for people to see that. I just want [people] to possibly see a little bit from my point of view and learn and be educated [about] what it was like to grow with disabilities … I just want to be an ordinary girl. My disability is part of me, so I am open about who/what I am and they can either accept me or go away.15 Emma is 20 years old and is one of the biggest movie fans. Her fandom is exemplified in the fact that she remembers entire dialogues from the movies that she has watched. This comes in very handy at club meetings and in writing down analysis. Emma is especially supportive of everyone in the club and is the club’s collective memory: In grade 2 I was diagnosed with ADHD for saying “no” and not cooperating with the teacher. At home no one ever treated me differently really but I felt different because my siblings had achieved their stuff without tutors or extra help. I also have DCD— developmental coordination disorder—which means I have poor eye–hand coordination … Sometimes I get really wild. I also really love writing short stories non-fiction and fiction.16 Colton is 20 years old and shared information about himself by making a poster consisting of a montage of pictures. He has recently started working at the local movie theater and is the mascot for KPU’s basketball team, the Kwantlen Eagles. Colton is the club’s researcher because he is very good at researching the actors who are in the movies the club watches. I like country music and rodeos. I like to travel and going to music festivals. I love the Vancouver Canucks [Hockey team] and really like their mascot, Fin. I like gaming and I love going to Anime Revolution, it’s a convention. This year I dressed up as Death the Kid from Soul Eater. I like tattoos. I have a Mickey Mouse tattoo on my right shoulder because I love Disney Land.17

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Methodology Developing relationships is central to conducting all research including research involving people with intellectual disabilities.18 This has been a key aspect to the Bodies of Film Club. Both Fiona and Jaci established rapport with the club prior to the start of the project. In March 2014, Fiona’s second-year mass media class got together with Teresa Morishita’s APPD class and watched the film, The Ringer.19 Jaci was in Fiona’s media course and both Katie and Colton were enrolled in Teresa’s class. From that experience, Jaci, Katie and Colton accompanied Fiona and Teresa to Nanaimo, British Columbia in June 2014 to make a presentation about The Ringer experience at the Inclusion BC20 annual conference. The following year, Fiona and Jaci attended Teresa Morishita’s new APPD class where they all watched the film, What’s Eating Gilbert Grape21 and discussed stereotypes and media representations of disability over a three-day period. Kya, Christian, Emma and Colton were part of that class. From both experiences, participants volunteered to be involved in the research and the Bodies of Film Club was created. When the film club gets together and watches films, they discuss and identify stereotypes. However, perhaps one of the most interesting aspects of this research is the fact that the stereotypes that are repeatedly shown in films are not necessarily viewed as negative by the club. The research methodology for the Bodies of Film Club strives to create an environment where everyone is understood as an expert in their own lives and therefore an expert in providing a critical analysis of films representing intellectual disability. Key aspects to the methodology includes: sharing lived experiences, note taking, group discussions, one-on-one interviews, social media messaging, creating posters, sharing other content and creating alternate endings. The club meets in the late afternoon for sessions that last between three and four hours. The club however, moves beyond the official meetings. For example, on October 21, 2015, the club went to the movie theater to see the celebratory re-release of the Back to the Future films. The club also dressed up for Hallowe’en and celebrated by watching The Nightmare Before Christmas.22 Since December 3, 2015, the club has been invited to speak at an annual film festival hosted by the Inclusion British Columbia Foundation and British Columbia Self Advocacy Foundation to celebrate the UN International Day of Persons with Disabilities. These experiences are what maintains relationship building and moves beyond traditional research methodology.

Group Discussions Key to the data collection is group discussions. After (and often during!) the films the club has unstructured discussions about the overall film and stereotypes. These discussions usually transform into discussions about other issues—this is because of the unstructured format. Fiona generally lets the discussions go where they go but eventually, and with Jaci’s assistance, leads the group back to discussions around the issues in the film. This unstructured format has allowed for the emergence of discussions whereby the club has talked openly about their lived experiences. This has been central to the overall project and for maintaining relationships and has facilitated an understanding of the life experiences of the club members. Kya, Christian, Katie, Emma and Colton are the experts and Fiona and Jaci are humbled listeners, eager to learn from them. Experiences with bullying, struggles with independence and problems with securing employment are examples of some of the issues that emerge out of these discussions. During one club meeting, instead of watching a film the club wanted to sit in a circle and talk about themselves and their lives. This was an important moment for the club; a moment that cemented the

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relationship building that has become so central to it. Led by the incredible honestly, trust and mutual support that has come to represent the club, each person talked candidly about their struggles and triumphs. After everyone had shared their stories, Kya turned to Fiona and asked what her story was and if she had a disability. Fiona shared her own story and explained about having a rare inherited skin disease that marks her as different and, as she had previously maintained, now creates a sense of pride for her, but still not without shame. This journey towards self-acceptance was not easy, but being embraced by women with physical disabilities and/or differences helped create that sense of pride for her.23 After some “hmmms” and a few glances at Fiona’s skin, the group reassured her (as she had done for them) that our “differences” are not really what challenges us. It’s the way the social world views disability and difference that causes our negative experiences. This is evident in what Emma says about her fear of people knowing she has a disability: “I don’t tell people when I meet them that I have a disability. You have to trust them. People are judgmental—they may judge you.”24 The group is very aware about how their reflections of their own experiences are important for understanding not only each other but also for analyzing the films. Fiona asked each of the club members what they liked about the club. Emma and Katie said the following: Emma: I like how we are not judgmental. We are very open …We are very comfortable and understanding—we are understanding each other.25 Katie: If we did this in a classroom, we wouldn’t be able to express our emotions on the subject. We are open to our ideas. Also, we all understand each other.26 Christian spoke about how when he was younger he was very social but due to a history of bullying in school he “became more isolated and just becoming shy.”27 When Fiona commented that he was really social in the club he responded with: “The club is really just bringing what I used to be back out.”28

Keeping Connected At the first club gathering, Fiona gave everyone their own notebooks in order for them to take notes during the films and during group discussions. The intent was to also encourage the recording of ideas when not in the club, similarly to what she does when performing her own data collection and writing. At the end of each meeting, Fiona takes Jaci’s notebook home to transcribe her notes along with her own. Everyone put their names on the cover and seemed to take gleeful ownership of them. Over time, the notebooks have become a source of pride for some of the members, while others do not write in them at all. Kya has been most prolific in her writing and keeps kidding that she will need a new notebook soon. Fiona has also taken Kya’s home on several occasions and transcribed her notes. The night the club watched I Am Sam,29 Colton was looking at his iPhone during most of the movie. Fiona assumed he was bored but was proven wrong. After the film Colton contributed to the group discussion and shared his own critical analysis. When it was time to go home, Fiona collected Jaci’s notebook. Colton then handed her his book and said he wanted her to take his home and read it too. When she got home she opened it up and realized that far from being bored with the movie, Colton had been on his phone researching Sean Penn, who portrayed the leading character. He had written down all the information he could find about him, personal and professional. This is one of the key ways that Colton experiences the films; he does research on them while watching them. 162

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Soon after the club first started to meet and once it was discovered that everyone had Facebook, Fiona started a private Facebook page for the club. This is a way to determine if the club is meeting and at what time. This is where the club discusses their food choices for the meeting. Everyone chips in and the club rotates between pizza and burger snacks. One week Colton posted a note to everyone that we should get A&W food because all the money was going to the MS society.30 Film suggestions are also posted as are other pieces of information. We also post photos and upload video interviews on the club page. After the September meeting where everyone shared their lived experiences, Jaci posted on the Facebook page: I wanted to thank everyone for the conversation yesterday. Even though many things shared were sad or frustrating, I think it was empowering for us to connect through similar and different experiences. ☺31 Kya responded with: I feel the same way plus we all got to connect on a personal level and I now know more about everyone and what their life through school was like.32 Christian posted the following: It’s like terror. I’m mostly scared of strangers now and I never was. I’m getting more shy than I ever was in the past … ☹ but that [meeting] helped me a lot.33 Fiona also stays connected with the club individually via Facebook messenger or via texting. Constant checking in with quick messages and even emojis is central to the maintenance of the relationship-building. Kya will often send Fiona a message on Facebook asking questions regarding the writing she is doing in her notebook. Christian invited Fiona to his Hallowe’en party, Emma let her know she had her wisdom teeth out and Colton informed her that he got his movie theater job via Facebook Messenger. The in-group discussions and Facebook postings have led to the sharing of other content. For example, the first film the group wanted to watch was Forrest Gump.34 Soon after we watched the film there was a news item circulating on social media about a man who was inspired by the film to run across the United States.35 Fiona posted the article on our Facebook page that generated a bit of interest and then followed up with a discussion at the next club meeting. Both Katie and Kya shared videos during club meetings. These videos were about bullying issues. As previously mentioned, the club’s rapport was built out of candid discussions regarding experiences with bullying. Katie shared the Ted Talk video by Lizzie Velasquez, a young woman born with a rare condition where she can’t gain weight. She was bullied online and called “The Ugliest Woman in the World.” Her Ted Talk is about how she defeated the bullies by not feeling shame for her appearance.36 Kya brought the music video for David Guetta’s Titanium for the club to watch, explaining that the video made her think about the bullying she and other people with disabilities have experienced.37

I Am Sam There is enormous value in exploring lived experiences as research methodology.38 Watching the film I Am Sam allowed for an amazing conversation to unfold not just about the film but about 163

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ourselves and the way disability is understood by those outside of our club including family members, teachers, peers and the general public. The film tells the story of a man39 with an intellectual disability, Sam Dawson (played by Sean Penn), and his struggle to keep custody of his 5-year-old daughter Lucy (Dakota Fanning). Much of the film focuses on the custody court hearings where Sam and his legal team attempt to calculate what love is to demonstrate Lucy’s need to remain with her father rather than live permanently with a foster family. The news media and audiences loved the film. Its worldwide total box-office gross reached US$97.8 million.40 In 2002, Sean Penn was nominated for the Academy Award for Best Actor in a leading role. Also in 2002 the film was awarded the Producers Guild of America’s inaugural Stanley Kramer Award, which recognizes films or individuals that “illuminate and raise public awareness of important social issues.”41 Academic sources were not as enthusiastic, citing the Hollywood happy ending as problematic as well as the persistent disability stereotypes, such as childlike, dependent, pitiful and asexual.42 The club responded positively to the film and recognized the important themes regarding parenting, employment and discrimination. Similarly, with Colton, Christian’s analysis focused on Sean Penn’s performance: Christian: I Am Sam was pretty good seeing how basically Sean Penn took the role and wowed everyone. Fiona: What did you like about his performance? Christian: His performance of that certain disability was spot on. Fiona: What disability do you think the film was portraying? Christian: I can totally get how he had a bit of autism … he didn’t know exactly how to react to certain things … he knows a lot of facts about the Beatles a lot like me. A lot of different things.43 Another important method for the project is to ask the club what they think happens after the film is over. At the end of I Am Sam, we don’t know what the final custody agreement is. We do not get to see a court hearing where perhaps Sam is awarded custody. We do not get to hear Lucy’s foster mother state out loud that Sam can offer Lucy something she cannot. We are left with the image of a happy, perhaps non-conventional family including Sam, Lucy, friends and the foster parents, all celebrating Lucy’s (and Sam’s) soccer match. I asked the club what they thought the custody result would be. Emma’s analysis was that Lucy would live with her foster parents in the week and live with Sam on the weekends. This way they could “see each other whenever they wanted.”44 In contrast, Colton said Sam would get custody of Lucy because he identifies that throughout the film Sam matures and develops skills he believes are needed in order to be a good parent. Colton said the following: “[H]e’s growing with her … because Sam grows and learns and he cares and raises Lucy. [He] breaks out of his routine [going to i-hop] for her and tries/does new different things.”45 Katie, Kya and Christian, on the other hand, agreed with some of the academic reviews that the happy ending was not realistic. Kya felt that “having that much support for Sam and Lucy in the system is unrealistic.”46 Katie maintained the following: “We want to live in a caring world but in reality, it isn’t that way. If that was real it wouldn’t end up happy.”47 The analysis of this film, and all the films we have watched,48 comes out of the club members’ own experiences. Kya and Katie said the following regarding this method: Kya:

We think about the movies and characters by putting ourselves in their shoes and also imagine what they would be like placed in the real world.49

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Katie: We reflect on how we think about the films. Our own experiences. If I was in their shoes what would I do?50 Keeping this in mind, the club was asked if they saw any similarities with their own experiences and those of the characters in the films we have watched. I would say mostly all of them I can relate to in my life … but the most recent one would be I Am Sam because so many people say we are like Sam. People say we can’t have relationships; we can’t look after kids; we can’t … ah … be off on our own, live on our own. Stuff like that. So I mostly relate to him.51 Christian: It’s kind of like Sam for me—because I was pretty much hated basically. I was bullied quite a lot [in all levels of school]. I have always had a bit of a problem with just being social. At a young age I used to be just like always wanting to have friends, always talked, always being social. And as the years went on after so much bullying I became more isolated and just becoming shy.52 Katie: I feel like it’s great to be who I am but sometimes I would rather close off to the world like ah Quasimodo.53 Ah he went out there. He exposed who he was. He was um … everyone liked him at first and then some people were judgmental. The crowd just joined in and it just brought back memories of school, how I opened myself up and then I was destroyed from the inside out.54 Emma: Ummm [pause] I would say probably Sam [pause] … because they don’t think he’s independent … So, I’m like Sam in that way. Like I’m independent but I’m trying to get more independent … like living on my own … when I’m out in public then I’m like independent but when it comes to … [pause] you know … like living on my own then they think I need the extra help.55 Colton: Ah I would probably say Jack Skeleton from The Nightmare Before Christmas [pause] how he well he’s the king of Hallowe’en but then he goes to Christmas Town and learns about Christmas. And he comes back to Hallowe’en town and starts kind of messing with Christmas and how sometimes he doesn’t understand the meaning of Christmas. Sometimes I feel like sometimes I don’t understand the meaning of some things.56

Kya:

At the beginning of this chapter the question was asked “What does empowerment look like and how do we measure it?” Just before submitting this chapter to the book editors, Fiona asked Kya to write something about herself, to be included as her introduction to the readers. What Kya wrote answers that question about empowerment from the club’s perspective: In the beginning Fiona asked us if we would watch movies and talk about how they portrayed people with disabilities … We only knew Fiona a little bit and we knew each other a little bit as well. As time went on the more we chatted the atmosphere changed with every question Fiona had to ask. We became close friends with each other. Thanks to Fiona our Bodies of Film Club is not entirely a club. [It’s] more of friends catching up, celebrating special events together. As we watch these movies about people with disabilities we start seeing each other grow and we start to learn more about ourselves and each other. Fiona has made this space into something wonderful; she fills us all with joy to teach people about who people with disabilities really are as people.57 What Kya wrote isn’t entirely just about Fiona, which is why it is perfect. It’s about us, the Bodies of Film Club, and how this club has created an opportunity for all of us to want to share 165

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our experiences while analyzing film portrayals of disability. The desire to both share one’s life experiences and to trust that the response will be non-judgmental is a perfect example of what empowerment looks like.

Acknowledgments Funding for this project was provided by internal research grants from Kwantlen Polytechnic University, Surrey British Columbia, Canada. The Bodies of Film Club would like to recognize and thank Teresa Morishita for her continual support of this project. Without her, the Bodies of Film Club would not exist.

Notes 1 Christian Burton, interview by Fiona Whittington-Walsh, November 4, 2015. 2 This chapter is a brief introduction to the Bodies of Film Club and presents both its members and methodology. A thorough discussion of the methodology and film analysis is beyond the scope of this chapter. This chapter is written with accessibility in mind, including plain language, paragraph length and endnoting references instead of in-text referencing. 3 Fiona Whittington-Walsh, “From Freaks to Savants: Disability and Hegemony from The Hunchback of Notre Dame (1939) to Sling Blade (1997),” Disability & Society 17, no. 6 (2002): 695–707; Paul K. Longmore, Why I Burned My Book and Other Essays on Disability (Philadelphia, PA: Temple University Press, 2003). 4 Michael Berubé, “The Cultural Representation of People with Disabilities Affects Us All,” Chronicle of Higher Education 43, no. 38 (1997): B4–B5; Paul Darke, “Understanding Cinematic Representations of Disability,” in The Disability Reader: Social Sciences Perspective, ed. Tom Shakespeare (London: Continuum, 1998), 181–200; Katie Ellis, Disabling Diversity: The Social Construction of Disability in 1990s Australian National Cinema (Saarbrücken, Germany: VDM Verlag, 2008); Whittington-Walsh, “From Freaks to Savants.” 5 Whittington-Walsh, “From Freaks to Savants”; Olivia Raynor and Katharine Hayward, The Employment of Performers with Disabilities in the Entertainment Industry (Los Angeles, CA: Screen Actors Guild, 2005); Stephen P. Safran, “The First Century of Disability Portrayal in Film: An Analysis of the Literature,” Journal of Special Education 31, no. 4 (1998): 467–479. 6 Patrick Devliegar, Tal Baz and Carlos Drazen, “Mental Retardation in American Film: A Semiotic Analysis,” Semiotica 129, no. 1/4 (2000): 1–28; Julie Stump, “Discriminatory Portrayals of the Mentally Disabled in Popular Films: Some Preliminary Thoughts,” Contemporary Justice Review 5, no. 2 (2002): 189–193; Kathleen LeBesco, “There’s Something About Disabled People: The Contradictions of Freakery in the Films of the Farrelly Brothers,” Disability Studies Quarterly 24, no. 4 (2004); Elizabeth England-Kennedy, “Media Representations of Attention Deficit Disorder: Portrayals of Cultural Skepticism in Popular Media,” Journal of Popular Culture 41, no. 1 (2008): 91–117; Stephanie Kirkpatrick, “The Disney-Fication of Disney: The Perpetuation of Hollywood Stereotypes of Disability in Disney’s Animated Films” (Master’s Thesis, University of Akron, Ohio, 2009). 7 Len Barton, “Developing an Emancipatory Research Agenda: Possibilities and Dilemmas,” in Articulating Difficulty: Research Voices in Inclusive Education, ed. Peter Clough and Len Barton (London, Sage, 1999), 29–39; Chris Kiernan, “Participation in Research by People with Learning Disabilities: Origins and Issues,” British Journal of Learning Disabilities 27, no. 2 (1999): 43–47; Jan Walmsley, “Inclusive Leaning Disability Research: The (Nondisabled) Researcher’s Role,” British Journal of Learning Disabilities 32 (2004): 65–71; Lou Townson, Sue Macauley, Elizabeth Harkness, Rohhss Chapman, Andy Docherty, John Dias, Malcolm Eardley and Niall McNulty, “We Are All in the Same Boat: Doing ‘People-Led Research,’” British Journal of Learning Disabilities 32 (2004): 72–76; Bryony Beresford, Rosemary Tozer, Parvaneh Rabiee and Patricia Sloper, “Developing an Approach to Involving Children with Autistic Spectrum Disorder in a Social Care Research Project,” British Journal of Learning Disabilities 32 (2004): 180–185; Simon Abell, Jackie Ashmore, Suzie Beart, Peter Brownley, Adam Butcher, Zara Clarke, Helen Combes, Errol Francis, Stefan Hayes, Ian Hemmingham et al., “Introducing Everyone in Research: The Burton Street Group,” British Journal of Learning Disabilities 35 (2007): 121–124; Irene Tuffrey-Wijne, Jane Bernal and Sheila Hollins, “Doing Research on People with Learning Disabilities, Cancer and Dying: Ethics, Possibilities and Pitfalls,” British Journal of Learning Disabilities 36 (2008): 185–190. 8 Colin Barnes, “What a Difference a Decade Makes: Reflections on Doing ‘Emancipatory’ Disability Research,” Disability & Society 18, no. 1 (2003): 3–17.

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9 The study’s research ethics were approved in June 2015. 10 Since first writing this chapter, the Bodies of Film Club has been joined by six new members, including sociology students at KPU. The inclusion of other members fulfills one of the goals of the project, which is to create a non-segregated space to watch and critically discuss films. 11 Fiona Whittington-Walsh is currently the lead researcher in an initiative at KPU, the Including All Citizens Project, where the five film club members are taking Faculty of Arts courses for credit on par with their peers. This project involves transforming critical pedagogy rather than offering adapted curriculum. The project has been supported by internal KPU grants as well as a large grant from the Vancouver Foundation. 12 Kya Bezanson, group discussion, September 23, 2015. 13 Christian Burton, group discussion, September 23, 2015. 14 Jaci MacKendrick, email message, October 8, 2018. 15 Katie Miller, group discussion, September 23, 2015. 16 Sawatsky, group discussion, September 23, 2015. 17 Colton Turner, group discussion, September 23, 2015. 18 See Kirsten Stalker. “Some Ethical and Methodological Issues in Research with People with Learning Difficulties,” Disability & Society 13 (1998): 5–19; Walmsley, “Inclusive Leaning Disability Research”; Lois Cameron and Joan Murphy, “Obtaining Consent to Participate in Research: The Issues Involved in Including People with a Range of Learning and Communicative Disabilities,” British Journal of Learning Disabilities 35 (2006): 113–120; Leanne Dowse, “‘It’s Like Being in a Zoo’: Researching with People with Intellectual Disabilities,” Journal of Research in Special Educational Needs 9, no. 3 (2009): 141–153. 19 The Ringer, directed by Barry W. Blaustein (Los Angeles, CA: Fox Searchlight, 2005). 20 Inclusion BC is a non-profit organization that advocates for the full inclusion of people with disabilities into all aspects of society. 21 What’s Eating Gilbert Grape, directed by Lasse Hallström (Los Angeles, CA: Paramount Pictures, 1993). 22 The Nightmare Before Christmas, directed by Henry Selick (Burbank, CA: Buena Vista Pictures, 1993). 23 See Fiona Whittington-Walsh. “The Broken Mirror: Young Women, Beauty, and Facial Difference,” Women’s Health and Urban Life 6, no. 2 (2006): 7–24. 24 Emma Sawatzky, group discussion, September 23, 2015. 25 Sawatzky, group discussion. 26 Sawatzky, group discussion. 27 Burton, interview. 28 Burton, interview. 29 I Am Sam, directed by Jessie Nelson (Burbank, CA: New Line Cinema, 2001). 30 Colton Turner, Facebook post, August 27, 2015. 31 Jaci MacKendrick, Facebook post, August 21, 2015. 32 Kya Bezanson, group discussion, September 10, 2015. 33 Burton, group discussion. 34 Forrest Gump, directed by Robert Zemeckis (Los Angeles, CA: Paramount Pictures, 1994). 35 Jay Grossman, “Real Life Forrest Gump Is Halfway Across U.S.,” Detroit Free Press, July 8, 2015, www. freep.com/story/news/2015/07/08/barclay-oudersluys-forrest-gump-running/29853201. 36 Lizzie Velasquez, “How Do You Define Yourself?” Ted Talk, TEDxAustinWomen, December 20, 2013, www.youtube.com/watch?v=c62Aqdlzvqk. 37 David Guetta, “Titanium,” EMI Music France, December 20, 2011, www.youtube.com/watch? v=JRfuAukYTKg. 38 See Thomas A. Schwandt, “Constructivist, Interpretivist Approaches to Human Enquiry,” in Handbook of Qualitative Research, ed. Norman K. Denzin and Yvonna S. Lincoln (Newbury Park, CA: Sage, 1994), 118–137; Marie Knox, Magdalena Mok and Trevor R. Parmenter, “Working with the Experts: Collaborative Research with People with Intellectual Disability,” Disability & Society 15, no. 1 (2000): 49–61; Lingling Zhang and Beth Haller, “Consuming Images: How Mass Media Impact the Identity of People with Disabilities,” Communication Quarterly 16, no. 3 (2013): 319–334. 39 It is significant that Sam is male; most single-parent families—with or without disabilities—are female. 40 “I Am Sam Worldwide Box-Office,” Box Office Mojo, accessed October 7, 2017, www.boxofficemojo. com/movies/?id=iamsam.htm. 41 “Producers Guild of America to Honor Sean Penn With 2011 Stanley Kramer Award, January 6, 2011,” accessed October 7, 2011, www.producersguild.org/news/news.asp?id=56039&hhSearchTerms=%22%22I +AM+SAM%22%22. 42 See Swati Varma, “Disability Through the Lens of the Movie I Am Sam, Hollywood production,” Psychology & Developing Societies 23, no. 2 (2011): 297–305; Jessie Nelson, “Reviews: I Am Sam,” British Medical

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43 44 45 46 47 48

49 50 51 52 53 54 55 56 57

Journal 324 (2002): 12223; DeShaunta Stewart, “The Art of Educating the Disabled,” Community College Week 15, no. 2 (2002): 4. Burton, interview. Sawatzky, group discussion. Turner, group discussion. Kya Bezanson, group discussion, September 23, 2015. Miller, group discussion. To date the club has watched: Back to the Future (1985); Back to the Future Part II (1989); Down Under Mystery Tour (2010); Forrest Gump (1992); Freaks (1932); Ghost Busters (1984); Harry Potter Series (2001–2011); The Hunchback of Notre Dame (1996); I Am Sam (1992); Inside/Out (2015); Man of Steel (2013); The Mighty (1998); Mozart and the Whale (2005); The Nightmare Before Christmas (1993); The Ringer (2005); Skull Island (2017); Superman (1976); What’s Eating Gilbert Grape (1993); The Wizard of Oz (1939). Bezanson, group discussion, September 23, 2015. Miller, group discussion. Bezanson, group discussion, September 23, 2015. Burton, interview. The Hunchback of Notre Dame, directed by Gary Trousdale and Kirk Wise (Burbank, CA: Walt Disney Pictures, 1996). Miller, group discussion. Emma Sawatzky, interview with Fiona Whittington-Walsh, November 4, 2015. Colton Turner, interview with Fiona Whittington-Walsh, November 4, 2015. Kya Bezanson, Facebook message, November 26, 2015.

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15 DISABILITY NARRATIVES IN THE NEWS MEDIA A Spotlight on Africa Olusola Ogundola

Introduction Africa, a developing continent, is home to a high number of disabled people with about one in ten Africans living with some form of disability.1 Disability is a prominent phenomenon here— you cannot hide it. This obvious manifestation notwithstanding, the news media in Africa are yet to find disability issues newsworthy enough, let alone devote a tangible amount of coverage to them. There is no doubting the fact they are symbolically annihilating issues about a significant number of people on the continent, and this calls for urgent concern. Whatever stories on disability exist in the news media in Africa, they are—more often than not—pejorative, stereotypically offensive and discriminatory. In filling the void created by this disturbing disinterest in disability, coupled with a dearth of scholarship on the subject matter, this chapter presents a comprehensive picture of what narratives shape disability stories when they make it onto the news agenda (cultural angle); why disability issues are being ignored (the economic equation); and how to make right the wrongs of several decades of “disability marginalization” in the news media (the civil rights agenda). The perspectives that follow throughout this chapter are my experiences navigating disability, media, culture and economics in Africa. This chapter dwells on the relationship the news media share with disability in Africa. In assessing that relationship however, it is imperative we have a sense of how African society views disability from a cultural perspective. We need to examine the underlying ideology that has influenced what the average media worker rolls out as content. We cannot wish this away with a wave of hand because, as Beth Haller has cautioned, media practitioners give to society what they assimilate from society.2 Shoemaker and Reese explicate further that “media content takes elements of culture, magnifies them, frames them and feeds them back to an audience.”3 Most of my experiences have been in Nigeria, Africa’s most populated nation. The population of Nigerians living with disabilities was estimated to be around 19 million in 2018.4 This is more than the entire population of some individual African countries and more than the entire population of some African countries put together. A glimpse at the African culture from a historic perspective could unearth how disability issues have fared in the claws of the news media over the years. Culture in this chapter is conceptualized as the totality of how different members of society exist or continue to exist within a defined space. The term “continue to exist,” in this context, isn’t limited to mere physical existence alone. In order to “continue to exist,” members of the dominant class within that

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defined space perpetually renegotiate the basis for their existence through hegemonic intricacies. Here is a caveat though: don’t presume, by the term “African culture,” that Africa is a homocultural society. Far from it! One culture varies from the other in several ways. Let me illustrate this better by narrating an experience during a visit to Cotonou, the capital city of Benin Republic, a neighboring West African country to Nigeria. This was on the occasion of a cohort building meeting for the 2010/2011 Ford Foundation International Fellowship Fellows-Elect. I had just been awarded this prestigious fellowship and we were billed to lodge at the Hotel Du Lac in Cotonou for the event. The trip coincided with my birthday, February 6. What better way to celebrate than go on this trip with folks having almost everything settled— food, hotel bills—at no expense of mine! I had relished every moment until late in the day. For dinner, I ordered any African food, hoping to get something familiar. My background in military barracks (my Dad served in the Nigerian Army) had exposed me to several ethnic groups in Nigeria, including their food. To cut a long story short, I almost went to bed without food that night because I couldn’t fathom what I was served. It wasn’t anything Nigerian! That is how diverse Africa can be. Diversity is prominent in Africa if one truly knows the continent inside out. This is obvious in its tradition, religion and language and, like these variables, disability is a diversity issue but it is yet to attain that status. Consider, for instance, the work of Chomba Muny (a lecturer of special education at Kenyatta University in Kenya), which exposes a variation of attitudes towards people with disabilities in Africa through an extensive review of literature on cross-cultural factors that impact disability perception from historic perspective. These varying attitudes could be condensed into two major themes of “tolerance” and “revulsion,” working to perpetuate the ideology of oppression. Perceptions that linked disability to “the supernatural” basically account for tolerance in some African communities. For instance, the Chagga people in East Africa believed that people with disabilities have powers to pacify evil spirits, therefore care was taken not to harm them; in Dahomey (now Benin Republic), people with physical challenges were conscripted into the local police, apparently to help unravel mysterious cases employing their presumed mystical prowess; some communities in Nigeria’s Benin City assumed that children with disabilities bring good luck because they were perceived as having supernatural protection; and the Ga people from the Accra region in Ghana held people with intellectual disabilities in awe because they were perceived as the reincarnation of some deities.5 On the other hand, perceptions that linked disability to “evil” account for revulsion in other African communities. The Ashanti people of Ghana precluded people with physical impairments from holding chieftaincy positions and promote eugenic practices by eliminating children with congenital and intellectual impairments; in Kenya and Zimbabwe, disability was perceived as a curse and shame on any family having a member with disability; and Nigeria and Africa in general have held beliefs that disability is a consequence of activities of witchcrafts, jujus and other evil forces.6 News reports of killings of people with albinism for ritual purposes in Tanzania have been rife in recent times. In the same vein, some African communities have had cultural practices where body parts of people with certain forms of disability are considered suitable for sacrificial and other ritual purposes. With these kinds of components, the ideology of oppression has remained the undercurrent force fuelling these cultural attitudes toward people with disabilities in Africa. It is from this same ideological perspective that journalists and other media workers produce content for audiences’ consumption. The danger with ideologies, as Kellner observes, is that they “make inequalities and subordination appear natural and just and thus induce consent to relations of domination.”7 African culture is replete with negative stereotypes of disability and its news media have reinforced them by encoding them through representation. 170

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Why the News Media Ignore Disability Stories I was appointed chairman of the Association for Comprehensive Empowerment of Nigerians with Disabilities (ASCEND), Oyo state chapter, in 2007. Our core objective in ASCEND is to ensure full participation of Nigerians with disabilities in all sphere of life—particularly in politics. As chairman of ASCEND in the state, I was expected to lead a delegation to join the national body in Nigeria’s federal capital territory—Abuja (led by the president, Mr. Cosmas I. B. Okoli) to mark the 2008 International Day for Persons with Disabilities. Among several options on the table to get our state government’s attention to sponsor our trip to Abuja, we opted for a protest action. Early enough, we had identified the media as a critical partner capable of purveying our agitation for an inclusive society across to the public. Without prior knowledge of news media practice, I had presumed rightly that “unusual events” sometimes make it onto the news agenda. This is because journalists include on their news agenda mainly stories that measure up to indicators of newsworthiness, including the “unusual” that tells “us that something is happening that is different from our day-to-day lives.”8 Shoemaker and Reese assert that “news selection criteria themselves may be said to be based on … the … unusual,”9 a view corroborated by Heider with his suggestion that television news thrives on conflict and visual spectacles.10 Consequently, we opted for a protest action to attract news media attention. In Nigeria, and I guess the same holds for most African countries, it is unusual to find people with disabilities employing public protest as a tool for driving home their demands to government. We adequately informed both the print and electronic news media in our domain of our protest plan and excitedly looked forward to a beam of television cameras and an array of press microphones to give our protest a global audience. Beside the Broadcasting Corporation of Oyo State (BCOS—the official mouthpiece of the state government), no news media organization graced the event when we eventually took our protest to the governor’s office. But for total calm while keeping tabs on the BCOS television programs for the rest of that day, I could have missed our protest when it snappily breezed through the airwaves that night. The BCOS did not deem our protest to be “breaking news” or even to include it in the major news headlines. I was left wondering if our protest did not meet the news selection criteria for “unusual events” or we simply did not fit the mold of activists in the eyes of the news media. Why the news media in Africa ignore disability stories is made plain in a second noteworthy experience. In readiness for the 2011 general elections in Nigeria, several organizations—government and non-government—were mobilizing and sensitizing marginalized groups on the need to get involved in the voters registration exercise being conducted by the Independent National Electoral Commission (INEC), the body saddled with the responsibility of managing elections in Nigeria. If politics is a game of numbers as it is often opined here, I perceived we could explore ways of utilizing our huge population of persons with disabilities to our advantage in the elections. We set out to organize a seminar in the city of Ibadan. Soon after the event, we embarked on a “house-to-house” campaign to encourage eligible persons with disabilities to register and obtain their temporary voters card (TVC). During this campaign, we observed that a lot of persons with disabilities within the Hausa community of Sabo Area in Ibadan would be excluded from the voters’ registration exercise largely because they lacked awareness of its importance. Consequently, we decided to make a courtesy visit to the traditional ruler as well as leaders of the various disability groups in the community. On this occasion, however, we succeeded in persuading some news media organizations to cover our event. To my chagrin, soon after we rounded off our visit, I was accosted by two reporters (obviously acting as spokespersons for the others) to either compensate them for their service (this is what is referred to as “brown envelope

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syndrome” in Africa) or lose the chance of getting coverage of our visit aired or published at all. “That is how it is done,” retorted one of the spokespersons at my seeming confusion. “So, how much money should we pay to all of you in order to air this event?” I asked in return, in an effort to appease them. Terje S. Skjerdal sheds more light on this syndrome as it is conceptualized in Africa: [I]t is safe to say that the following three characteristics are usually involved if we speak about the original “little” brown envelope: the practice occurs on the personal level, it has some degree of confidentiality, and it denotes an informal contract between the source and the reporter whereby both parties have certain obligations. These three characteristics are visualized through the image of a brown envelope containing cash physically handed over from a source to a reporter.11 As these two stories indicate, the lack of coverage of disability stories could be attributed to a number of factors, some obvious and others not so obvious. A key starting point, however, is the news media workers’ economy in Africa.

News Media Workers’ Economy in Africa News media practitioners in Africa operate within one of the most hazardous environments in the world. They operate in a system that places little or no value on the job they do, thereby endangering their lives and that of immediate family members. Journalists and their family members are often in harm’s way for the public service they perform in Africa. As precarious as the communication industry appears in Africa, it remains a robust site for intense business activities. “Commercial journalism” is an appropriate label to apply to some news media organizations in Africa. This category is skewed toward profit making, and therefore more likely to ignore disability stories that, for the most part, make it onto the news agenda based on the corporate social responsibility (CSR) obligations of news media organizations. The desire to make profit at any cost is the major objective of their news operations, and this profit-making orientation is inimical to the journalistic ethics of fairness and balanced reportage. The effect of this posture is that news coverage has become “commodified” and only a privileged few get to air their opinions. In terms of remuneration for news reporters in Africa, their take-home pay, which really never takes them home, is far less relative to what their colleagues in developed nations earn. Worse still, there are no job security and long-term retirement benefits like pensions, particularly for those in the private sector. The plethora of challenges confronting the average news media worker may have contributed to the development of what is today termed “brown envelope syndrome” in Africa. The import of this syndrome is that some news media reporters in Africa prefer to give coverage to events/issues of “worthy groups” with the financial wherewithal to oil their palms. Due to physical and social barriers, particularly in the area of education and employment, militating against people with disabilities in Africa, they appear too poor in the perception of the average news reporters to be categorized as a “worthy group.” This situation resonates with Haller’s position that the mainstream media have not considered people with disabilities a worthy group to discuss as yet.12 Consequently, as I found in a study on disability underrepresentation in Nigeria’s news media, disability issues/events sponsored by people with disabilities or their organizations have less chances of making it on the news agenda when compared with similar issues/ events sponsored by powerful non-disabled entities such as government or non-government organizations.13 In Africa, the news media prefer to depend on “others” (though regrettably not 172

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people with disabilities) as gatekeepers of disability experience. I will discuss such “others” in more detail below. This treatment of disability by the news media in Africa suggests “symbolic annihilation.” This concept, first introduced by George Gerbner, indicates a mere absence in representation.14 Gaye Tuchman, in her essay titled “The Symbolic Annihilation of Women by the Mass Media,” expanded the concept when she observed that “women are not important in American society, except perhaps within the home. And even within the home, men know best,”15 suggesting insignificance. The concept of symbolic annihilation of disability as applied by the news media in Africa can be summarized as follows: The concept of symbolic annihilation can be viewed from two angles: nonrepresentation and underrepresentation by the media. Non-representation occurs when the media ignore a people or group’s voice … Underrepresentation suggests some amount of coverage or presence in the media. However, in the case of disability news stories, opinions of others and not the self advocacy of people with disabilities, make up the little amount of coverage that underrepresentation suggests. In other words, instead of opinions of people with disabilities themselves, it is that of the “ableist,” which is replete with stereotypically offensive language that influences disability news stories.16 In effect, the news media in Africa have perceived people with disabilities as “infants” (dependents) who require others to think and decide on their behalf in spite of notable feats made in areas of education, sports and businesses by some Africans with disabilities. This is so in Africa because the cultural norms regarding disability are shaped by the ideology of oppression, and the disability rights movement is still in its nascent state.

Narratives that Shape Disability Stories in the News Media Both John Clogston and Beth Haller (pioneer media and disability scholars) have provided us with a spectrum through which we may locate news frames as an approach to disability media analysis. This ranges from non-representation to misrepresentation. In unpacking this parlous situation of people with disabilities in African new media, it is important to note that non-representation and underrepresentation of people with disabilities alone do not constitute marginalization—misrepresentation accounts for a huge part of the blame. Misrepresentation by the news media can be widespread, having capacity to percolate deep into audiences’ subconscious. With respect to disability, misrepresentation occurs when the news media feed distorted frames of disability to audiences, resulting in erroneous attitudes and actions toward people with disabilities. There has been a great deal of misinformation on issues around disability in Africa, and this has translated into marginalization of persons with disabilities, especially in public spaces where access to schools, workplaces and worship centers calls for concern. As underscored earlier in this chapter, cultural beliefs held about disability from historical times in Africa play a critical role in how society, including media workers, relate with people with disabilities. These beliefs have demonized disability to say the least, and persons with disabilities still suffer marginalization even in climes where they are no longer practiced. How much of these have changed over time is yet to be ascertained; however concerns are growing over how the news media reinforce them through representation. From such a perspective, it is clear where narratives that shape disability stories in the news media in Africa come from. It is certain that those narratives do not emanate from the disability community because the “disability rights movement” is still in its nascent stage. The concept of disability as a “minority rights” issue is still being overshadowed by the charity and medical paradigms that disparage the person. The social model that indicts society for the 173

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marginalization that persons with disabilities suffer is not even yet celebrated; otherwise there would have been a radical change in physical infrastructures to promote access. The disability culture domain remains an uncharted space urgently requiring a sense of identity to be shaped by disability activists and scholars. People with disabilities have been reticent in coming up with appropriate language for the news media in Africa to utilize in framing their experiences. Do news media reporters in Africa go out deliberately to denigrate the disability experience? I do not support the position that they do (arguments on this will be fully discussed in the next section). In my judgment, they are totally exonerated from any wrongdoing. They are simply reflecting what society has imposed on a community whose culture has remained obscured. Except people with disabilities in Africa assert themselves and chart a formidable and positive identity for their community, the news media will perpetually revert to cultural narratives about disability in Africa. An important finding in a content analysis of the framing of disabilities in Nigeria’s newspapers in my earlier research revealed that the media in Nigeria employ stereotypically offensive language when reporting disability stories. This, no doubt, has negative impact in how society relate with people with disabilities. People with disabilities in Nigeria are perpetually marginalized and discriminated against partly as a result of how the media have represented them to the society. Media frames that emphasize frailty, charity, disparity and derogatory labels leave room for stereotype, prejudice and stigma.17 As long as media content remains a reflection of culture, so will it remain a mockery for a marginalized class who attempt to reshape media content without first investigating and understanding the ideology fueling the unequal power relationship in culture.

Making Right the Wrongs of Several Decades of Disability Misrepresentation in the News Media in Africa Concerns over how the news media in Africa represent disability are growing. On my return to Nigeria from the United States in 2013—after a master’s degree in media studies from Syracuse University in New York—I set out to establish a disability and media research center (DMRC) as an arm of my disability rights organization—Project Restoration International (PRI). One of our early activities at DMRC was to engage management of news media organizations in Nigeria, through emails, on negative disability representation in news reports. Of note is the response from Ekiti State Broadcasting Service (ESBS) to our email, pointing to a laundry list of negative disability terms it had employed for the past six months. In an email message to the author on May 30, 2014, the general manager of the FM station advised: “We are in total agreement with your concern and will make a stronger effort to ensure a sensitive treatment across the board of issues affecting people with disabilities.” He further requested a list of situation-specific references to guide members of staff at ESBS in reporting disability. In a similar vein, my attention was drawn to a report on disability representation in Ghana’s news media. The report, according to Vibe Ghana, an online news site, revealed that the Disability Rights Fund (DRF—a US-based disability rights organization) and the Ghana Federation of the Disabled have collaborated to provide training to a section of Ghanaian journalists on a series of topics on disability to promote a positive disability representation in the news media.18 All of these are indicative of the fact that a new season is dawning—the era of positive disability representation in the news media in Africa is approaching.

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As indicated earlier, I am not of the opinion that news media reporters in Africa go out to deliberately frame disability stories in a negative light. What I have gathered from informal interviews of some journalists on the issue is that the subject of disability appears “murky” with no clear-cut authority to turn to for guidance. There are divergent opinions on the subject, all shaped by the ideology of oppression from a cultural standpoint. The last two decades have witnessed a proliferation of organizations—government and non-government (including faith-based groups)—championing the “disability cause.” These are the “others” gatekeeping the disability experience. A good number of them, with predominantly non-disabled facilitators, employ the charity model to sustain their welfare obligations to persons with disabilities. Others, who are not so altruistic, express their “love” of people with disabilities in ostentatious ways. Some utilize the medical/exorcism models in order to “cure disability,” in a bid to restore “wholeness” to the person with disability. These are the gatekeepers of the “disability experience” the news media in Africa turn to for guidance when reporting disability stories.

Conclusion There are a number of initiatives that would contribute to a better representation of disability in the news media in Africa. First, news coverage is a scarce commodity and understanding how to attract it is critical for improved and positive disability coverage. In other words, successfully selling disability stories to news media workers is a necessity if people with disabilities or their organizations are to improve coverage in the African context. Heider advised that in order to successfully sell a story one must be able to convince news workers that such stories are not only current but also newsworthy and that “professional public relations firms offer clients that expertise.”19 Because of the perception that people with disabilities or their organizations lack the financial wherewithal to reward news workers who indulge in the practice of “brown envelope syndrome,” employing the services of professional public relations firms will go a long way toward reversing this patronizing perception. First, this has capacity to give events/issues of people with disabilities the desired “newsworthy status” they require to make it onto the news agenda—it indicates people with disabilities are not outside the norm of media practice. Second, it can help improve their economic worth and status in the perception of news media practitioners in Africa—it truly costs something to get anything worthwhile. Third, engaging the services of professional public relations firms can help people with disabilities avoid being complicit in “brown envelope syndrome,” which has been widely condemned as not only corrupt but unprofessional in practice—their role as a mediator will ensure professionalism. Guidelines on portraying disability in the media no doubt are a great idea and often advanced as a tool of change. Caution, however, is the watchword to ensure media practitioners don’t misconstrue the idea as an attack on press freedom.20 One way to ensure this is to carry media practitioners along as the guidelines are developed. Good-enough media practitioners in Africa are beginning to own up to the fact that the disability terrain is a murky one. Taking them by the hand to traverse the disability experience is not a bad idea. A synergy between the press and disability organizations does not come naturally in Africa: people with disabilities and their organizations must be proactive to initiate, nurture and sustain it. That way, the news media in Africa get to be part of the development (for instance, of the guideline) process and come to adopt it as their own document. In the same vein, the news media can be a powerful tool for disability empowerment by first helping to self-define people with disabilities and also improving the audience’s perception, which could in turn impact legislation. On February 22, 2016, the DMRC arm of PRI organized a training workshop for over 150 journalists in Nigeria with a grant of $1,000 from the International Fellowship Program (IFP) 175

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Alumni Award of the Ford Foundation. The event was a collaborative effort between the DMRC and the Nigeria Union of Journalists (NUJ; Oyo State Chapter). A guideline for reporting disability was developed (adapted with permission) from the work of the National Center on Disability and Journalism at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University in the United States. The DMRC’s ultimate goal is to help the Nigerian Broadcasting Commission (NBC) and by extension other broadcasting regulatory commissions in Africa to gain deeper understanding of conditions of disability and adopt a guideline for writing or talking about disability.

Notes 1 Economic Commission for Africa, The Demographic Profile of African Countries (Addis Ababa, Ethiopia: Economic Commission for Africa, 2016), 15, www.uneca.org/sites/default/files/PublicationFiles/demographic_ profile_rev_april_25.pdf. 2 Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010), 43. 3 Pamela J. Shoemaker and Stephen D. Reese, Mediating the Message: Theories of Influences on Mass Media Content (New York: Longman, 1996), 60. 4 National Population Commission of Nigeria (NPC), “NPC Puts Nigeria’s Disabled Population at 19 Million,” October 6, 2018, www.vanguardngr.com/2018/10/npc-puts-nigerias-disabled-population-at19million. 5 Chomba W. Munyi, “Past and Present Perceptions Towards Disability: A Historic Perspective,” Disability Studies Quarterly 32, no. 2 (2012), http://dsq-sds.org/article/view/3197/3068. 6 Munyi, “Past and Present Perceptions Towards Disability.” 7 Douglas Kellner, “Cultural Studies, Multiculturalism, and Media Culture,” in Gender, Race, and Class in Media: A Critical Reader, ed. Gail Dines and Jean M. Humez (Thousand Oaks, CA: Sage, 2011), 9. 8 Pamela J. Shoemaker, “Hardwired for News: Using Biological and Cultural Evolution to Explain the Surveillance Function,” Journal of Communication 46, no. 3 (Summer 1996): 36. 9 Shoemaker and Reese, Mediating the Message, 225. 10 Don Heider, White News: Why Local News Programs Don’t Cover People of Color (Mahwah, NJ: Lawrence Erlbaum Associates, 2000), 48. 11 Terje S. Skjerdal, “Research on Brown Envelope Journalism in the African Media,” African Communication Research 3 (2010): 369, www.academia.edu/486564/Research_on_brown_envelope_journalism_in_the_African_media. 12 Haller, Representing Disability in an Ableist World, 119. 13 Olusola Ogundola, “Symbolic Annihilation of Disability in Nigeria’s News Media” (paper presented at the twenty-fifth annual conference of Society for Disability Studies, Denver, Colorado, June 20–23, 2012). 14 George Gerbner, “Violence in Television Drama: Trends and Symbolic Functions,” in Television and Social Behavior, ed. George Comstock and Eli Rubinstein (Washington, DC: US Government Printing Office, 1972), 44. 15 Gaye Tuchman, “Introduction: The Symbolic Annihilation of Women by the Mass Media,” in Hearth and Home: Images of Women in the Mass Media, ed. Gaye Tuchman, Arlene Daniels and James Benét (New York: Oxford University Press, 1978), 17. 16 Olusola Ogundola, “Framing Disability: A Content Analysis of Newspapers in Nigeria” (Master’s Thesis, Syracuse University, 2013), 85, 86, http://surface.syr.edu/cgi/viewcontent.cgi?article=1014&context=ms_thesis. 17 Ogundola, “Framing Disability,” 87. 18 “DRF Educates Ghanaian Journalists on Disability Reporting,” Vibe Ghana, accessed July 12, 2015, http:// vibeghana.com/2015/04/14/drf-educates-ghanaian-journalists-on-disability-reporting. 19 Heider, White News, 56–57. 20 Shawn Burns, “Commentary: Words Matter: Journalists, Educators, Media Guidelines and Representation of Disability,” Asia Pacific Media Educator no. 20 (2010): 281, http://ro.uow.edu.au/apme/vol1/iss20/28.

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16 DISABLED MEDIA CREATORS IN AFGHANISTAN, CHINA AND SOMALIA Patricia Chadwick

Introduction In countries with fewer resources, people with disabilities are often the most vulnerable and hardest hit in society. The author of this chapter has been researching media and disability issues for almost 30 years, including working with Internews, an international media development organization for almost two decades. The chapter examines case studies from three countries, Afghanistan, China and Somalia, where the author has knowledge of the efforts of people with disabilities who work with media to advance disability rights and reduce stigma. Due to decades of near constant conflict both Afghanistan and Somalia have high numbers of disabled people and in 2004 both were ranked in the top five countries in the world according to the World Health Organization (WHO).1 In Afghanistan, due to economics and ingrained prejudices, prospects for people with disabilities are not very bright. Many employers believe disabled people are incapable of being productive employees. Basic physical access is limited; 73 percent of persons with disabilities above 6 years of age do not receive any education.2 In 2017, the Afghanistan Embassy in the United States sponsored an Afghan disability rights conference and strategized ways to better educate the Afghani public about disability, as well as creating better employment opportunities for disabled people there. With attention to media, the conference report said that to address the issue of stigma about disability in Afghanistan, they should advocate for “tribal leaders to use inclusive and respective language in all areas of Afghanistan through media campaigns.”3 China’s 1990 Laws on the Protection of Persons with Disabilities offer strong civil rights protections for disabled people, guaranteeing employment, education, welfare and access, but in reality many Chinese disabled people are illiterate because of inaccessible education and struggle to find employment. Chinese PhD student Dai Wangyun, who studies body culture and medical culture, says that the Chinese media cover disabled people in China in one of two contrasted ways. First, there is the so-called “encouragement model,” which emphasizes people with disabilities “might be ‘broken in body, but strong in spirit’ and lauds exceptional individual efforts to achieve things despite their disabilities.”4 Second, there is “the hardship model, which depicts disabled people as physically frail victims of misfortune who need society’s help. This view imbues the culture around disabled people with a feeling of pity.”5 As Wangyun notes, the overarching issue is that “in both of these models, the vast majority of disabled people—commonplace individuals trying to live normal lives—are largely absent.6

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Digital technology in China provides one glimmer of hope for better access for Chinese disabled people. Goggin et al.’s 2018 research reports that China uses digital technology as a “lever”: “digital technology has already become a significant part of disability policy, as people with disabilities seek employment and entrepreneurial opportunities through harnessing the power of information and communication (ICT) in China’s growing digital economy.”7 According to a report published by Amnesty International in 2015, “More than two decades of conflict, inadequate health services and discrimination have left people with disabilities in Somalia at risk of forced marriage, violence, rape and repeated forced evictions.”8 Less than 1 percent of disabled children are enrolled in school there. The country is so poor and ravaged by war and poverty that attention only recently has turned to people with disabilities there. A British report by K4D research on disability in Somalia in 2018 did not mention media specifically but said, “lack of data on disability in Somalia has contributed to limited awareness of disability issues among policy makers, planners, community leaders, services providers and the general public,” and one could add the news media to this list.9 Grassroots efforts in these countries to alleviate discrimination include a nationwide radio program in Afghanistan focusing on disability issues, a radio station run by blind people in China and a disability rights non-governmental organization (NGO) in Somalia that is working with the media to try to improve the visibility of people with disabilities: •

•

•

Qahir-e-Qahraman (Qahir the Champion) was a radio program produced in Afghanistan by two disabled journalists. More than 300 shows were produced, which were distributed to 40 radio stations across the country. The program is credited with moving the ground-breaking People with Disabilities Law forward in 2010.10 One Plus One, a radio station in China, produces programs that discuss topics such as the legal rights of disabled people, new assistive technology and how blind people can improve their life skills. The producers think it is essential that disabled people have their own, independent voice. In Somalia, Mohamed Ali Farah heads a disability rights organization that is working with a radio station to train disabled radio engineers and producers. Farah has also received training in media relations to advocate for the rights of people with disabilities in the media.

This chapter will examine these efforts in disability media in Afghanistan, China and Somalia in terms of their resourcefulness and impact on the disabled population.

Afghanistan: Qahir-e-Qahraman Radio Program Amina Azimi was a young girl when she lost her right leg from a rocket-propelled grenade that landed near her home in Kabul. Her family took good care of her but did not want her to leave the house as they feared for her safety and Amina was frustrated by the inactivity. Eventually, her mother helped her return to school but the teachers would not let her play with the other children.11 In the community, people would say things like, “Death is better than being in this situation. When this happened to me and I became disabled, my hopes were almost gone by looking at myself and other people’s negative reactions,” Amina said in an interview. “I had to let my hopes go — I could not do what I had been planning to accomplish.”12 Amina’s reaction was not surprising considering the condition for people with disabilities in Afghanistan, one of the poorest countries in the world and difficult even for non-disabled people. There are an estimated 1.5 million people with disabilities in Afghanistan. The 2006 National Disability Survey in Afghanistan (NDSA) reported that, based on an estimated population of 178

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25 million people, there are more than 800,000 persons with severe disabilities in Afghanistan, of whom approximately 17 percent are war disabled.13 On average, one household in every five has a family member with a disability. Although Afghanistan has ratified the Convention on the Rights of People with Disabilities and has its own law —the Law on Rights and Privileges of Persons with Disabilities—in practice, people with disabilities are often discriminated against in education and employment, as well as socially. NDSA found that 53 percent of men with disabilities over the age of 15 years are unemployed, compared to 25 percent of non-disabled men. (The unemployment rate for women is very high — 94 percent of women without disability and 97 percent of women with disability.) The NDSA also found that almost 73 percent of persons with disabilities above 6 years of age did not receive any education versus 51 percent for people without disability.14 When Amina went to look for work, she was asked, “Why are you seeking work, when those who are without disabilities are jobless?”15 She finally did find a job working as a secretary for Nafeesa Sultani, a woman with a disability who focuses on disabled women’s issues, especially employment, and is now the representative in the Afghanistan Parliament for people with disabilities. In 2007, Amina started the Women with Disabilities Advocacy Committee, where she worked as peer counselor and provided counseling to hundreds of women and girls with disabilities, most of whom had remained hidden in their homes for years. In 2011, she created Empowering Women with Disabilities (EWD), which provides training to women and girls with disabilities and their families.16

Reaching Out to Others Through Radio In 2017, only 34.7 percent of the total adult population in Afghanistan and 53.6 percent of young people aged 15–24 could read and write.17 According to the Asia Foundation, while the Internet is one of the fastest-growing sources of news and information in Afghanistan, increasing from 3.3 percent of respondents in 2013 to 16.8 percent in 2018, close to two-thirds (62.9 percent) of Afghans report using radio as their main source of news and information, just behind television (68.7 percent).18 During her time working with Sultani, Amina became involved as a presenter for a radio program, Qahir-e-Qahraman (Qahir the Champion), on disability issues started by UNDP’s National Programme for Action on Disability and later supported by the UN Mine Action Center for Afghanistan and Internews, a US-based media development non-profit organization. “The main focus of all the programs was to inform the public that people with disabilities are not weak,” said Amina of Qahir-e-Qahraman. “They are active members of society and should be treated like everyone else. Disability is not weakness.”19 The program often featured disabled people who were working or had their own businesses to serve as role models for the disabled listeners. “We always received good feedback from the listeners,” said Amina. “I talked to one woman who said that before listening to the program, she didn’t know that the Ministry of Martyrs and Disabled existed. She was happy that there was a place she could go to get assistance.”20 Eventually, the program became part of Internews’ radio program production network Salam Watandar. Internews trained Amina in journalism skills and with two other disabled journalists, the team produced close to 300 weekly programs. The programs focused on news, drama and advice by and for people with disabilities and were produced and aired nationwide. “It is the voice of the disabled community,” senior producer Haji Nader told Internews in 2011. He had lost an arm in a rocket explosion 30 years ago while fighting the Soviets as a member of the Mujahedin. “We receive dozens of phone calls every week from people around the country thanking us for the information we give them.”21 179

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One caller, Majid from Ghazni province, lost both legs in a mine explosion two years before. For more than a year following surgery at a local hospital, Majid stayed inside his house in his village, sinking into depression. He rarely left his home during the first year after the accident because he was afraid people would mock him.22 Then he heard Qahir-I Qahraman on Radio Ghaznawian, one of more than 40 local stations that air Salam Watandar’s national programming. Over the following weeks, Majid listened to several more shows and learned about local disabled people learning new skills at a training and employment center set up by the Swedish Committee for Afghanistan. Majid visited the center and enrolled in a tailoring class. After completing the course, he took a job as an assistant tailor at a local tailoring shop. Soon he opened his own shop, earning 800 to 1000 Afghanis a day, the equivalent of USD 16 to USD 20, well above the national per capita income.23 “After I announced my personal mobile number on the show a couple of months ago, Majid immediately called to thank me and my colleagues for changing his life,” Haji Nader said.24 “Six years ago, the disabled community decided that we should be given a chance to tell our story. And that’s what we’ll keep doing,” Haji said in a 2011 interview with USA Today.25

Looking Ahead Unfortunately, funding for the radio program was cut.26 For a while, the journalists produced the show with their own time and expense but currently the program is no longer on the air. For her part, Amina would like to get back into journalism and to provide information for people with disabilities, especially those in rural areas: “I would like to go to far-away provinces to meet with disabled people who have been isolated to inform them of their rights and what services are available to them.”27 Today, she is waiting for the security situation to improve in Afghanistan and for funding to become available to produce more radio programming. Amina now works as the project manager for the Afghan Landmine Survivors’ Organization (ALSO), spending her time supporting disabled people who survived injury from remnants of conflict, such as landmines and cluster munitions.28 She continues to work with other women with disabilities both in Afghanistan and internationally, particularly in other Asian countries. As for her personal journey, Amina says, “Looking back I see a big difference. I’m happy and proud of all my accomplishments.”29

China: A Radio Station and Disability Rights Organization Founded and Operated by People with Disabilities China’s 1990 Laws on the Protection of Persons with Disabilities offer strong civil rights protections for disabled people, guaranteeing employment, education, welfare and access, but in reality much in Chinese society is still inaccessible. According to a 2013 report by Human Rights Watch, over 40 percent of disabled Chinese people are illiterate,30 compared with less than 5 percent of the general population.31 The latest figures for employment published by the China Disabled Persons’ Federation show a 67.5 percent employment rate for people with disabilities in 2014; 79.8 percent of those are in rural and agricultural employment.32 The lack of social services in many areas, the lack of enforcement of disability rights laws and the stigma still attached to being disabled mean that many families do not believe they can care for a disabled child. Since China has relaxed its one-child policy and implemented “baby refuges,” close to 90 percent of the children in institutional care are disabled, indicating that most abandoned children in China have a disability.33 In rural areas, children with disabilities are often excluded from schools and, according to the National Bureau of Statistics of the People’s Republic of China quoted in the Human Rights 180

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Watch report, 75 percent of China’s disabled population live in rural areas. This has resulted in a 43 percent illiteracy rate among people with disabilities in China. Some 28 percent of children with disabilities cannot access basic education.34 Disabled students who make it through high school have traditionally been barred from attending regular universities. The gaokao, China’s competitive national college entrance exam, was not made accessible to the blind until 2014.35 Still, even if a disabled student is able to pass the exam, they may be barred from attending university because of a “physical fitness test” that requires applicants be without impairments. Two news stories in 2014 dominated coverage of the gaokao issue, one about a blind man who successfully petitioned to take the exam in Braille but wasn’t able to pass it due to his poor Braille skills (he had asked to be provided with electronic access)36 and another about a physically disabled young woman who passed the exam but then was rejected based on her disability.37 Both stories generated a lot of debate online. Even with some negative reactions to the stories, disability rights advocates believed it was a positive step to get the issue out in the open. As in other countries, hosting the Paralympics seems to bring more visibility—and thus more media coverage—to disability. University of New South Wales professor Karen Fisher explained how the 2008 Paralympics in Beijing got Chinese citizens talking about disability in a positive way.38 More recently, some Chinese people complained when Chinese Paralympians received little mainstream media coverage of their accomplishments; people took to social media to praise Chinese Paralympians in 2016.39 “As far as the visual disability community is concerned, the debate about how to fight for the right to take the gaokao may soon be a thing of the past,” says Fu Gaoshan, editor-in-chief of Qishi Consulting, in a report — China Disability Observed 2014 (written in partnership with the UK NGO China Vision). Gaoshan wrote: But when it comes to the entire disability community, the rights debate has only just begun. Even if it’s only taking place with the disability community at the moment, this kind of discussion will inevitably take the debate about disabled people’s right and interests even further.40

One Plus One : The Voice of People with Disabilities Qishi Consulting is part of One Plus One, a unique organization that is trying to change the situation for people with disabilities through a combination of media projects, job-skills training, a hotline and leadership training for young disabled people.41 Their goals are to give voice to the concerns of disabled people in China, change social attitudes and promote the integration of disabled people into mainstream society. They are committed to establishing and developing local organizations for disabled people and to protecting the rights of people with disabilities throughout China. The Beijing-based NGO is one of the only disabled people’s organizations in China established and run entirely by people with disabilities. It was started in 2006 by two disabled people with IT backgrounds. In 2008, two of the staff became the first fully accredited disabled Chinese journalists in the history of the Olympics.42 Above all, they believe it is essential that disabled people have their own, independent voice. In 2013, One Plus One teamed with the Media Research Institute of the Chinese Academy of Social Sciences to issue the Observation Report on China Print Media of Disability Reports from 2008 to 2012. Studies showed that the themes of 1,468 reports from 2008 to 2012 were mostly focused on disabled people’s health or rehabilitation and the help they received from others. The voices of people with disabilities were rarely represented and there were very few reports on education, employment and the participation of disabled people in public life. Most of the news 181

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reports failed to introduce disability rights concepts, such as inclusive design or discrimination or reference any of China’s disability laws.43 As a result of the research, One Plus One produced the Reporters’ Handbook for Reporting Disability, which encourages media to look at disability from a human rights perspective and promotes more positive terminology, such as the use of 残障 (cán zhàng), which translates roughly to “disabled and obstructed,” rather than the more commonly used 残疾 (cán jí), which translates to “disabled and sick” or “deformed.” One Plus One had begun promoting the term cán zhàng in 2006 and noted that its use in news media increased from less than 1 percent to around 10 percent in 2013.44 Cai Cong publishes YouRen, One Plus One’s magazine, written by and for the disabled community.45 Cong is trying to change the media image of people with disabilities: In addition to environmental obstacles, an important aspect is the various misunderstandings and negative attitudes … On many occasions, disabled people are regarded as useless and in need of compassion. It is these kinds of thoughts that put me through all those experiences and confusion in my early years. Where do these thoughts come from? Do disabled people isolate themselves or are they isolated by the public’s attitude and actions? Whatever the origin, mass media is constantly deepening the old stereotype image of the disabled in public.46 Improving the situation for people with disabilities anywhere in the world involves a multipronged approach, which includes disabled people being educated about their human and legal rights, forming social movements, advocating for policy change at a governmental level and changing the attitudes of the non-disabled public. In all of these, news and information play a key role. One Plus One operates a radio station — Voice of the Blind — that broadcasts throughout all of China via China National Radio, reaching as many as 300 million listeners. They are particularly interested in reaching rural areas, where their program is usually the only source of information about disability issues. Mastering the skills of radio production has given members of the production team the confidence to express their views. The programs cover issues such as how to access education and employment, independent living skills and accessible technology. To help disabled people in poor, remote rural areas of China obtain essential information, One Plus One operates regular “Mobile Advice Clinics,” staffed by members of One Plus One together with experienced legal, health and personal counselors. Over the course of 15 clinics they have given direct counseling to over a thousand disabled people. This has enabled them to keep in touch with some of the poorest people in the community. Listeners often call into the station’s hotline, seeking additional information. Cai Cong noted that they often want to know if One Plus One knows of a cure for their disability. We try to re-direct them to look at living with a disability — how they might access services and live independently. We want them to know that they are not the problem — the problem is the physical and attitudinal barriers within society.47 One listener of Voices of the Blind lives in the rural area of Sichuan Province. He is totally blind and the radio is the only way for him to get information. When he heard that One Plus One opened a hotline for the blind, he asked his family to buy a mobile phone for him so that he could give them a call. Through the hotline, he learned how to get free screen-reader software. He went to the local Disabled People’s Federation to get computer training and a living allowance.48 As Cong explains: 182

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Later he heard on the radio that we were beginning to provide a service to make audio books for the blind. He sent us a book about how to feed pigs, as he felt pig farming could be an employment option for blind people in rural areas. He got the idea that blind people are valuable and should be active by listening to our programs.49 The people who staff the hotline all have disabilities and are trained on the center’s accessible phone and computer technology. One of the staffers, a young woman who was working there during her summer break from college, said that growing up, her parents were supportive of her becoming independent and choosing her own career path. Ultimately, however, she was only allowed to attend the Special Education College of Changchun University that trains the blind students solely for massage therapy jobs. When asked if she wants to be a masseuse, she laughed and said, “No! I hate massage.”50 The education issue affects the employment rate of people with disabilities, which has been estimated at 73 percent, with men more likely to be employed than women.51 Aside from directly affecting people’s independence and ability to support themselves, this also has wider implications. As the Human Rights Watch report notes: “China loses as much as [USD] 111.7 billion, or about three percent of its GDP, as a result of lost productivity stemming from excluding persons with disabilities from the workforce.”52 One Plus One addressed the issue of education and employment, as well as other issues such as women with disabilities and access to information, in its 2012 report, Implementation of the United Nations Convention on the Rights of Persons with Disabilities. (China ratified the convention in 2008 but has been slow in implementing its principles. The United States has signed but not ratified the convention.)53

Leadership Camps To prepare a new generation of activists, One Plus One holds leadership-training camps for young disabled people from all over China.54 The workshops include disability equality training, information about the Convention on the Rights of Persons with Disabilities and disability rights in other countries, how to tell a good story, how to make use of social media and how to influence traditional media. At the end of camp, everyone is assigned to tell a story in three minutes.55 One leader at a recent camp, who has cerebral palsy and speaks with some difficulty, described his experience speaking in front of a group for the first time: During the process, I was very humorous, very witty, everybody was laughing happily. I felt very good. I was forced to do it but this taught me, we need to learn to take one step forward. When you have your first step forward, there is a new and beautiful world. Before I had very low self-esteem, no self-confidence, dared not to talk especially in front of people. When I was forced to break through, the result was not bad.56 An important aspect of the camp is connecting people with different types of disabilities with each other — especially those who are isolated in their communities — to encourage them to support each other and work together to effect change.

Can You Hear Disabled People’s Voices? On a national level, in an effort to move the disability rights movement in China toward more visibility, diversity and inclusiveness, in November 2014 One Plus One launched China Voice of Disability Month. The goal was to give a big picture of disability rights, educate people about 183

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resources and attract the attention of the government and public to promote changes in attitudes.57 It was the first large-scale joint activity created by the disability community and provided coverage of a full range of disability issues, taking place in 31 cities in 22 provinces and including 57 partners and 87 events.58 The starting point was “Can you hear disabled people’s voices?” and the end point was “Yes, I can hear disabled people’s voices.” The initiative included a public discussion in Guangzhou on disability and sex, one of the few times this topic had been openly discussed. “When disability and sex are put together,” says Cai Cong, “it opens up something that penetrates deep into the heart of the problem faced by disabled people: the acceptance of one’s body and oneself.”59

Somalia: Working with the Media Emerging from two decades of civil war and lawlessness, Somalia’s people are struggling with poverty and continuing violence. Moreover, as in many societies, people with disabilities are the hardest hit. “More than two decades of conflict, inadequate health services and discrimination have left people with disabilities in Somalia at risk of forced marriage, violence, rape and repeated forced evictions,” according to a briefing published by Amnesty International in 2015.60 “People with disabilities, particularly women and children, are the most vulnerable and discriminated against people in Somalia,” says Mohamed Ali Farah, director and co-founder of Somali Disability Empowerment Network (SODEN). “For example, less than one percent of disabled children are enrolled in school here.”61 Mohamed speaks from direct experience. The 31-year-old contracted polio at the age of 3. His family, like many with disabled children in Somalia, did not send him to school. Through his own initiative, he started attending school at the age of 14 but, without a wheelchair, had to crawl through the streets to get there. The temperature in Somalia often reaches 95 degrees Fahrenheit and the ground was scorching. The difficult situation for disabled people in Somalia and Mohamed’s own struggle to get an education inspired him to start SODEN in 2011. His disability rights organization, based in Mogadishu, focuses on education for disabled children, as well as other issues: “Last year, I was able to convince five families to send their children to school.”62

Media and Disability Mohamed wants to use media to change negative social attitudes about disability and to reach more families with his message about education. However, getting access to media is difficult, as he notes, “In Somalia, you can’t use the mass media unless you bribe them and most disability organizations don’t have enough money to bribe the media.”63 Outside of disability issues, media in Somalia has its problems. The country was ranked 167 out of 180 countries on the 2017 World Press Freedom Index produced by Reporters Without Borders.64 According to InternetLiveStats, in 2016 only 1.7 percent of the population or approximately 192,775 Somalians are online (ranked 164th out of 201 countries).65 For people with disabilities, getting the information they need and getting their voices heard is compounded by problems of invisibility, representation and access. Accurate, comprehensive coverage of disability issues can help alleviate stigma and discrimination and increase understanding of the capabilities of disabled people, which can lead to increased employment and educational opportunities and the ability of disabled people to participate in and contribute to society. Increased awareness can also help decrease abuse — disabled women and children and people in institutions are particularly vulnerable.66

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Disabled people need access to accurate information (on health, education and employment) in accessible formats to become empowered, participate in society, make decisions about their lives and fight for their rights. Delivering the information people need entails a three-pronged approach: • • •

recruiting and training disabled journalists and media professionals, giving them the tools and technical assistance to make media production accessible; training all journalists how to cover disability issues in an accurate, non-stereotypical and non-stigmatizing way; making mass media accessible to people with all types of disabilities.

Working with NGOs In Somalia, the media development NGO Internews conducted workshops on media literacy with members of civil society organizations, one of which Mohamed attended. Before the workshop, Mohamed did not trust media professionals, nor did he see them as an integral part of his communication work: “I was suspicious towards journalists and felt they often twisted people’s words, covered stories only when bribed and were not interested in civil society issues.”67 Fatuma Abdulahi, a journalist who was Internews Country Director in Somalia, agreed that bribery is still one of the most problematic issues in Somali media. “Journalists have lost credibility in the eyes of civil society organizations, so connecting them constitutes a good first step to win back trust.”68 Mohamed is happy that he has been able to obtain skills that can help him break down traditional barriers between journalists and the disability community. He is hopeful that he can help media professionals begin to understand why it is important to cover disability issues more comprehensively and accurately: “I feel more confident about approaching the media now. I came to realize that journalists are not as I imagined.”69 Mohamed was immediately able to put his new skills into practice on the International Day of Persons with Disabilities, December 3, 2014, when he held a well-attended press conference. In 2016, he received a national award for his efforts advocating for people with disabilities and to make public places in Somalia accessible.70

Conclusion The overarching theme that emerges from these case studies from Afghanistan, China and Somalia is the need for people with disabilities to be intimately involved in the process and decisionmaking concerning media production, portrayal and access. Because people with disabilities are more likely to live in poverty and face discrimination worldwide,71 it is imperative that they be consulted about what they need to produce media, how they want to be portrayed and what they need to access news and information. This means that the agencies that are involved in international media development should be including people with disabilities as a regular part of their media programs, proportional to their representation in society (approximately 15 percent worldwide but higher in developing countries72) and not just “special” disability programs. This may require some additional outreach due to the lack of access to education for many people with disabilities. As a British government official who works in the area of international development said in 2014, “It’s a sad truth that in many developing countries people with disabilities simply don’t count. No data is collected on their disabilities nor their abilities, so it’s as if they just don’t 185

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exist.”73 In these developing societies, people with disabilities have often been shoved aside with the reasoning that limited resources should be spent on non-disabled people. However, governments need to recognize how inclusion of disabled people in mainstream society benefits all of society, rather than seeing them as a burden. Funding and developing media programs that focus on training people with disabilities and accurately representing their issues helps this inclusion process. Ensuring that people with disabilities have access to news and information in whatever format works for them will help them advocate for their needs and make informed decisions about their lives.

Notes 1 Based on “Years of Health Lost Due to Disability (YLD) per 100 Persons 2004.” World Health Organization, World Report on Disability (Geneva: WHO, 2011), 271–280. 2 Ahmad Masoud, “Most of 800,000 People with Disabilities in Afghanistan are Uneducated and Unemployed,” Rawa News, www.rawa.org/temp/runews/2013/02/06/most-of-800-000-people-with-dis abilities-in-afghanistan-are-uneducated-and-unemployed.html. 3 Afghan Disability Rights Conference, Final Report Afghan Disability Rights Conference: From Policy to Programming, May 23–24, 2017, Washington, DC, www.afghanembassy.us/contents/2017/05/documents/AfghanDisability-Rights-Conference-Report_final.pdf. 4 Dai Wangyun, “Invisible Millions: China’s Unnoticed Disabled People,” Sixth Tone (December 3, 2017), www.sixthtone.com/news/1001285/invisible-millions-chinas-unnoticed-disabled-people. 5 Wangyun, “Invisible Millions: China’s Unnoticed Disabled People.” 6 Wangyun, “Invisible Millions: China’s Unnoticed Disabled People.” 7 Gerard Goggin, Haiqing Yu, Karen R. Fisher and Bingqin Li, “Disability, Technology Innovation and Social Development in China and Australia,” Journal of Asian Public Policy (July, 2018): 2. 8 Amnesty International, Somalia: Prioritise Protection For People With Disabilities, March 12, 2015, www. amnesty.org/download/Documents/AFR5211662015ENGLISH.PDF. 9 Brigitte Rohwerder, “Disability in Somalia,” K4D Helpdesk Report (Brighton, UK: Institute of Development Studies, January 19, 2018), https://assets.publishing.service.gov.uk/media/5a744dbded915d0e8b f188ec/Disability_in_Somalia.pdf. 10 Carmen Gentile, “Afghanistan Radio Program Offers a Voice for the Disabled,” USA Today (August 4, 2011), https://usatoday30.usatoday.com/news/world/afghanistan/2011-08-03-Afghanistan-radio-programsdisabled_n.htm. 11 Amina Azimi, interview with Patricia Chadwick with translation by Ajmal Khan, February 2016. 12 Azimi, interview. 13 Government of Afghanistan, Afghanistan National Disability Action Plan, 2008–2011 ([Kabul]: Ministry of Labor, Social Affairs, Martyrs and Disabled, 2008), 4, www.apminebanconvention.org/fileadmin/APMBC/ IWP/SC_june08/Speeches-VA/SCVA-StatusImplem-3June08-Afghanistan-ActionPlan-en.pdf. 14 Government of Afghanistan, Afghanistan National Disability Action Plan, 4. 15 Zarghona Salehi, “Sadly, Rights on Paper Only for the Disabled,” Pajhwok Afghan News, May 25, 2014, www.pajhwok.com/en/2014/05/25/sadly-rights-paper-only-disabled. 16 Azimi, interview. 17 Central Statistics Organization (CSO), Afghanistan Living Conditions Survey 2016–2017: Highlights Report (Kabul: CSO, 2018), 2, http://cso.gov.af/Content/files/Surveys/ALCS/Final%20English%20ALCS% 20Highlight(1).pdf. 18 The Asia Foundation, Afghanistan in 2018: A Survey of the Afghan People (San Francisco, CA: Asia Foundation, 2018), 154, https://asiafoundation.org/publication/afghanistan-in-2018-a-survey-of-the-afghanpeople. 19 Azimi, interview. 20 Azimi, interview. 21 Internews Staff, “After Losing His Legs, an Afghan Man Finds Hope from a Unique Radio Program,” May 2011, www.internews.org/updates/after-losing-his-legs-afghan-man-finds-hope-unique-radioprogram. 22 Internews Staff, “After Losing His Legs.” 23 Internews Staff, “After Losing His Legs.” 24 Internews Staff, “After Losing His Legs.”

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Gentile, “Afghanistan Radio Program.” Amina Azimi, interview. Amina Azimi, interview. Amina Azimi, interview. Amina Azimi, interview. Human Rights Watch, “As Long as They Let Us Stay in Class”: Barriers to Education for Persons with Disabilities in China (New York: Human Rights Watch, July 2013), www.hrw.org/report/2013/07/15/longthey-let-us-stay-class/barriers-education-persons-disabilities-china. Adult and Youth Literacy: National, Regional and Global Trends, 1985–2015 (Montreal, Quebec: UNESCO Institute for Statistics, 2013), 43. China Disabled Persons’ Federation, “Statistical Communique on the Development of the Work on Persons with Disabilities in 2014,” March 23, 2016, www.cdpf.org.cn/english/Resources/statistics/201603/ t20160323_545438.shtml, quoted in “Inclusion of People with Disabilities in China,” International Labor Organistion and Irish Aid, April 11, 2016, www.ilo.org/wcmsp5/groups/public/—asia/—ro-bangkok/— ilo-beijing/documents/publication/wcms_469048.pdf. UNICEF, “Our Priorities: Children with Disabilities,” accessed December 10, 2018, www.unicef.cn/en/ child-protection/children-with-disabilities. Human Rights Watch, “As Long as They Let Us.” China Education Network, “Notice of the Ministry of Education on Doing a Good Job in the Enrollment of Regular Universities in 2014 [in Chinese], http://gaokao.eol.cn/kuai_xun_3075/20140328/ t20140328_1091870_2.shtml. Didi Kirsten Tatlow, “Support for Blind University Aspirant Turns Censure, New York Times June 10, 2014, http://sinosphere.blogs.nytimes.com/2014/06/10/support-for-blind-university-aspirant-turns-to-cen sure/?mtrref=undefined&gwh=13853CF7903D5CB767CF664048E1B297&gwt=pay. Nargiz Koshoibekova, “University Rejects Girl for Being Disabled,” The World of Chinese, August 6, 2014, www.theworldofchinese.com/2014/08/university-reject-girl-for-being-disabled. “Karen Fisher on China Disability Services,” CGNT America, March 26, 2018 (YouTube video), www. youtube.com/watch?v=zigd2-2_WSk. Clifford Coonan, “Paralympic Success Challenges China’s Attitude to Disability,” Irish Times, October 3, 2016, www.irishtimes.com/news/world/asia-pacific/paralympic-success-challenges-china-s-attitude-to-dis ability-1.2813993. Fu Gaoshan, Cai Cong and Liang Tukun, eds., China Disability Observed 2014 (Beijing: Qishi Consulting and Youren Magazine, 2015), 45. Gaoshan, Cong and Tukun, China Disability Observed, 2. Cai Cong (One Plus One partner; CEO of Youren Culture), interview with Patricia Chadwick, in person, Beijing, July 2015. One Plus One and the Media Research Institute of the Chinese Academy of Social Sciences, “Observation Report on China Print Media of Disability Reports from 2008 to 2012.” One Plus One, Reporters’ Handbook for Reporting Disability (Beijing: One Plus One, 2013). Youren Magazine, Chinese language online magazine for and by people with disabilities, accessed June 10, 2014, www.youren.org.cn. Cai Cong, “Enabling Disability in China—Cai Cong & Alessandra Aresu,” On the Level, June 10, 2014, Youtube, www.youtube.com/watch?v=U_TT58wTEmQ. Cai Cong (One Plus One partner; CEO of Youren Culture), interview with Patricia Chadwick, August 2015. Cong, interview August 2015. Cong, interview, August 2015. One Plus One staff member, interview with Patricia Chadwick, visit to One Plus One Radio Station, August 2015. Cuntong Wang and Min Li, “Gender Differences in Employment Among People With Disabilities in China,” Journal of Disability Policy Studies 29, no. 1 (2018): 12–21. Sebastian Buckup, The Price of Exclusion: The Economic Consequences of Excluding People with Disabilities from the World of Work (Geneva: International Labor Organization, 2006), 24, quoted in Human Rights Watch, As Long as They Let Us. United Nations Enable, “CRPD and Optional Protocol Signatures and Ratifications,” November 2017, www.un.org/disabilities/documents/maps/enablemap.jpg. One Plus One website, accessed September 1, 2015,www.yijiayi.org/en. One Plus One website.

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56 57 58 59 60 61 62 63 64 65 66

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One Plus One video on leadership camps (no longer available online), 2015. Cai Cong, interview by Patricia Chadwick, in person, Beijing, July 2015. Gaoshan, Cong and Tukun, China Disability Observed, 43. Gaoshan, Cong and Tukun, China Disability Observed, 28. Amnesty International, Somalia. Mohamed Ali Farah, interview with Patricia Chadwick, Skype, Somalia, March 2015. Farah, interview, March 2015. Farah, interview, March 2015. Reporters Without Borders, “2017 World Press Freedom Index,” April 26, 2017, https://rsf.org/en/2017world-press-freedom-index-tipping-point. InternetLiveStats, “Internet Users by Country July, 2016,” accessed May 1, 2016,www.internetlivestats. com/internet-users-by-country. Karen Hughes, Mark A Bellis, Lisa Jones, Sara Wood, Geoff Bates, Lindsay Eckley, Ellie McCoy, Christopher Mikton, Tom Shakespeare and Alana Officer, “Prevalence and Risk of Violence Against Adults with Disabilities: A Systematic Review and Meta-Analysis of Observational Studies,” Lancet 379, no. 9826 (2012): 1621–1629, www.who.int/disabilities/publications/violence_children_lancet.pdf. Mohamed Ali Farah, interview by Internews staff, in person, Somalia, January 2015. Fatuma Abdulahi, interview by Internews staff, in person, Somalia, January 2015. Farah, interview. Farah, interview. Sam Jones, “People with Disabilities ‘Simply Don’t Count’ in Many Developing Countries,” Guardian, October 23, 2014, www.theguardian.com/global-development/2014/oct/23/people-disabilities-dontcount-developing-countries-lynne-featherstone. The World Bank, “Disability Inclusion,” last modified September 26, 2018, www.worldbank.org/en/ topic/disability. Jones, “People with Disabilities ‘Simply Don’t Count.’”

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17 YOUTH WITH DISABILITIES IN AFRICA Bridging the Disability Divide Kimberly O’Haver

Introduction Across Africa, Internet penetration lags behind every other region on the globe, but that does not mean that digital activism is underdeveloped evenly across the continent.1 The converse is, in fact, true: Africa, especially northern and eastern Africa, is a hotbed for access to and use of social media and digital activism in ways that aid in creating tangible, long-lasting change. Among those with unprecedented access to such technology are young people in their late teens to mid-twenties, who are using the social media applications associated with mobile technology in novel and innovative ways. Perhaps most prominently in the 2011 revolutions in Tunisia and Egypt, young protesters harnessed Facebook, Twitter and simple text messaging on local mobilephone networks to rally broad support for protesting the excesses and abuses of ruling regimes and even “tweeting tyrants out” of power.2 Kenyans had laid the groundwork for this form of activism during the 2010 constitutional referendum when regular citizens and the news media used social media to share information and opinions and as a wellspring for real-time monitoring of election results.3 These events as well as those in Egypt and Tunisia have led media and communications scholars to research and write extensively about digital activism in both the sub-Saharan and North African contexts often with a focus on youth mobilization. The penetration of mobile phones by all social groups, but particularly youth, in Africa and the quick appropriation and adaptation of social media into the local contexts has been noted by scholars studying the lively digital cultures that have appeared on the continent even in those African countries with significant infrastructural, economic and political obstacles to access.4 According to Herman Wasserman at the University of Cape Town, recent studies of African digital media usage have shifted from a focus on the impact on development through the use of technology, to an analysis of the lived experiences of African media users, including their appropriation, domestication and adaptation of such technologies “to suit their economic, social, and political circumstances.”5 However, even as Linda Herrera and Rehab Sakr speak specifically about youth as “wired revolutionaries” in the Middle East and North Africa, who carry their digital media and activist experiences even to those who do not directly interact with virtual spaces,6 it is important to remember that digital media also has the ability to open new channels—online and offline—for intolerance and increased authoritarian control in illiberal and totalitarian regimes. Evgeny Morozov, a researcher studying the social implications of technology, reminds us that the Internet and its associated technologies can be as

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useful for dictators as for dissidents,7 and we should remember that youth can be susceptible to a varying array of diverse influences and experiences not necessarily in step with Western democratic aims across political, social and cultural spectra. Although the Internet, mobile technology and related social media applications may be harnessed in various ways—benevolent or not—they are now an integral part of modern global society. In this chapter, I am specifically interested in how these digital resources influence activism and inclusion in activist movements for youth with disabilities, as a marginalized population in the global South. Thanks to poorly functioning land lines across the continent, a lack of traditional communications infrastructure and business models that are inclusive of the poorest classes,8 mobile phones have become so ubiquitous that more people in Africa have access to digital mobile technology than have access to electricity or running water. Almost half of sub-Saharan Africa’s population, 44 percent or just under 444 million people, subscribed to mobile services by the end of 2017 and growth is predicted to continue, albeit at a slower rate, according to the GSMA, an organization representing the interests of mobile operators globally.9 The Internet in much of Africa has become almost synonymous with a mobile phone especially given the launch of new mobile broadband networks across the continent and the phenomena of low-cost smartphones becoming more readily available: the total number of smartphone connections in sub-Saharan Africa that stood at 250 million at the end of 2017, equivalent to a third of the total connections base, is predicted by the GSMA to double and reach two-thirds of total connections by 2025, equivalent to an installed base of around 690 million.10 Though these statistics appear impressive, Jonathan Donner, a researcher on ICT and development, notes in his writing that a static, numbers-only understanding of mobile Internet connectivity is elusive with shifts to new mobilities subject to local constraints on effective use.11 The reality of this scenario calls into question aspects of the universality of the definition of the digital divide, which states that there is a gap between people who can access and afford information communications technology (ICT). As explained by disability and media scholars Kerry Dobransky and Eszter Hargittai in 2006 in one of the first academic articles to discuss the digital divide through a disability lens, digital inequality exists where there are wide variations in socio-economic status and educational opportunities among populations with limited access to ICT.12 Race and disability also link to poverty in the traditional view of digital inequality, and a “disability divide” even appears as an explanation of the gap in ICT access specifically experienced by disabled people.13 A decade after their first exploration of the disability divide, Dobransky and Hargittai have taken this further in a 2016 article unpacking the notion of the intersectionality of disability when combined with other disadvantaged positions in society as multiplying exclusion.14 They note that there is little research affirming that access to ICT has improved the lives of persons with disabilities through everyday use despite a widespread perception of its potential to do so. Like Morozov, they treat gingerly the notion that access always leads to equality. In Africa, however, though a digital divide surely exists, the definition of the digital divide as well as the percentage and/or strata of the population affected may challenge the parameters of the phenomena as delineated by the scholarly community thus far since a greater percentage of the general population has access to digital technology via mobile phones.15 Similarly, youth across the continent are using social media and digital technology as drivers for advocating for systemic and cultural change. One subsection of young people—youth with disabilities —are using texting, Twitter, Facebook and Gmail accounts in innovative ways as instruments in a new generation of disability rights activism. To highlight the impressive social media and mobile technology campaigns being employed by some African youth against the continuation of discriminatory political and societal practices and lack of rights-based policies, this chapter tells the story of African youth with disabilities and their use of social media and mobile technology. I provide background about the young people who were members of the African Youth with Disability Network (AYWDN), but my 190

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focus is on two members who are young men with disabilities: the first, Seray, who is from West Africa and lives with a physical disability, and the second, Frank, who is from southern Africa and lives with a sensory disability. I start by describing the AYWDN and the diversity of experience and origin in terms of geography but also disability and then briefly look at the unique nature of ICT access in Africa and what it means for youth with disabilities. Next, I examine disability prevalence in Africa in relation to youth in general and the AYWDN members in particular. Finally, I share in more detail how Seray and Frank are using digital technology in their roles as activists while discussing both the benefits and limits of ICT in the context of disability activism in the broader African context.

Methodology To understand how the AYWDN members engage with social media and digital technology as a medium for activism, I sought volunteers among the members to speak to me in more depth via an announcement on Facebook Messenger. Of the approximately half-dozen members active on Facebook, three noted that they had taken on roles as activists either as a hobby or as part of their employment. I sent them identically structured email interviews. Two replied with in-depth answers, and these are the two most prominently featured here. The interview questions focused on updates on employment status, current engagement in disability rights activism, use of digital technology and social media for the promotion of disability rights at work or as independent activists and feedback on the usefulness of the AYWDN in helping them get where they are today. The interviews were also instrumental in reconnecting with the youth as we had had little dedicated contact beyond “likes” or brief comments on Facebook for at least two years. It is important to note that this is a small sampling and not an exhaustive representation of persons with disability across Africa. To accompany the interviews, I have engaged in a textual analysis of the online spaces curated by these young people to gauge activism especially since regular posts or contributions to social media may be shared not in the spirit of activism but as of general interest to that person. I have completed a literature review on several themes including the current state of ICT in Africa, especially the use of mobile technology; trends in activism in social media and citizen journalism; the digital divide and the disability divide; and finally, research, both in support of and contradicting the claim that the Internet has made the world more accessible to people with disabilities.

African Youth with Disabilities Network On two occasions in 2011, 40 young people representing 13 African nations gathered at a lodge outside Nairobi, Kenya, to share experiences from their lives about the realities of coming of age with a disability in their countries. During their second meeting in December that year, they decided to found the pan-continental African Youth with Disabilities Network (AYWDN) and establish a secretariat for the organization in Nairobi.16 They met again in Dakar, Senegal, July 2012, for training in using social media techniques as well as more formal processes such as writing press releases with person-first language and interviewing techniques, which put the person before the disability. I had worked with this group as a representative of the youth activism section at an international grant-making organization, which funded the AYWDN’s early convenings. Though the group has since become largely dormant as funding streams dried up due to changes in donor priorities, the shared experience provided an impulse for a handful of the participants to pursue further studies in disability rights, explore activism or to become more deeply engaged in the projects of the disabled persons organizations with which they already were connected. Though the AYWDN main office no longer functions as initially imagined, today country branches of the AYWDN operate and are especially active in Liberia and Sierra Leone in West 191

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Africa. The Sierra Leone office appears to be thriving and professionalizing as a non-governmental organization (NGO) working on projects both by and for youth with disabilities, while its counterpart in Liberia struggles with basic administrative functions. Seray from the AYWDN branch in Sierra Leone has become a published journalist with a focus on citizen journalism thanks to training on mobile technology and journalism from a UK-based organization.17 Citizen journalism, which is now accessible worldwide thanks largely to the high penetration of mobile phones globally as well as new social media networking applications, is when the general public engages in the creation and dissemination of information often bypassing traditional news media outlets. Courtney C. Radsch, a veteran journalist and researcher who has studied the impact of new media in Egypt’s revolution, offers a refined definition of citizen journalism in the digital age as “an alternative and activist form of newsgathering and reporting that leverages networks social media and functions outside but in relation to mainstream media institutions.”18 In this definition she references citizens’ journalistic activism as a potential “response to shortcomings in the professional journalistic field” driven by different objectives and ideals and reliant on alternative sources of legitimacy. This would be true in much of Africa where the majority of the mainstream media is manipulated by political and economic forces, which in turn preclude youth from traditional forms of participation.19 In southern Africa, Frank from Zambia has mounted high-profile advocacy campaigns through his position at the disabled persons organization, Zambia Deaf Youth and Women.20 AYWDN participants from Ethiopia, Kenya, Tunisia, Uganda, Zambia and Zimbabwe have gone on to successful careers with disabled persons organizations and make valuable contributions to the movement. Not represented among the alumni of the AYWDN active at disabled persons organizations and NGOs, however, are young women and male and female youth with intellectual and psychosocial disabilities. Though a handful of bright young women with physical disabilities and one young woman with an intellectual disability were among the original AYWDN participants, the young men largely are the only ones to have gone on to higher-profile careers in the disability rights and activism field. Two of the young women who stood out among the group have married and immigrated to the United States and Europe where they are engaged in other pursuits. Another young woman continues to work on youth topics at an NGO in Ghana, and though disability is recognized at her organization, it is not the focus. The young woman with an intellectual disability is active in a self-advocacy organization in her home country of Kenya and works as a domestic assistant doing childcare and household tasks. In looking at the evolution of the AYWDN, it appears that its members’ current positions replicate the global underrepresentation of women’s voices and voices of youth with mental disabilities at the policy debate and higher advocacy levels. This is not to say that the young women engaged in the AYWDN do not continue to contribute to the movement, but that their voices—as is the case globally—likely do not reach the highest echelons of power where decisions are made. This trend is alarming, as it suggests that even among the younger generation in Africa patriarchal norms persist. This is troubling, as the facts about persons with disabilities published by the United Nations explain that women report higher incidents of disability than men and note that women and girls with disabilities are more vulnerable to abuse and violence.21

ICT in Africa Though Internet penetration in Africa represents the largest single area behind the digital divide, telecommunications networks on the continent are also among the fastest growing globally. According to the International Telecommunication Union (ITU), only one in five people across Africa used the Internet in 2017 compared with two in five in the Asia-Pacific region and three in five in the Commonwealth of Independent States (CIS) region.22 Yet, mobile telephone 192

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services with Internet access across Africa are steadily growing, making Africa the one place in the world where the words “Internet” and “mobile” are nearly synonyms.23 According to a Digital in the Round blog post by Guido Ghedin in 2013, in some African countries such as Botswana, Malawi, Nigeria and Swaziland, the majority of Facebook users access it using a phone.24 Previously unaffordable, Internet-connected smartphones offer greater accessibility and GSMA predicts the number of unique mobile subscribers in sub-Saharan Africa will grow from 420 million in 2016 (a penetration rate of 43 percent), to “more than half a billion by 2020, by which time around half the population will subscribe to a mobile service.”25 Conversely, the ITU reported in 2017 that Africa was the only region where broadband penetration for mobile connectivity was below 30 percent.26 The ITU explains that this is likely due to fixed coverage costs being several times higher than in developed countries. As such, lowercost technologies associated with mobile phones such as simple text messages are more widely used than some of the data-plan crunching applications such as Twitter, Facebook and Tumblr.27 The business models of African mobile service providers cater to the poorest layers of the population, where persons with disability are often situated, with basic, low-priced phones and prepaid cards in small denominations. Though the context is consistently changing as technology and other factors evolve, the continued reliance of this model has allowed mobile usage to penetrate into the population at large independent of socio-economic status and most importantly independent of disability as long as one’s disability does not require an assistive device.28 Among the AYWDN members, nearly all had laptops and mobiles and were connected through social media to each other, friends and family and other interests. Most of those with sensory disabilities had assistive devices. I recognize this group may not have been representative of the larger population of persons with disabilities in Africa and elsewhere, since such tools are often either not readily available or prohibitively expensive especially if they do not accompany the emergence of new technologies and must be purchased as an afterthought.29 If the AYWDN members did not have a laptop or mobile device, the members made frequent use of the public computers at the meeting venues, showing a familiarity with the Internet and its applications. However, despite the high penetration among this group of Internet connectivity and online savvy for communications and entertainment, few had yet developed or shown deep interest in developing skills using the Internet and mobile phones as tools for cutting-edge disability rights activism.

Disability in the African Context and among AYWDN Members According to the World Health Organization and the United Nations, at least 81 million of the world’s nearly 1 billion people living with some form of disability live in Africa.30 However, these estimates may be conservative, as tools for collecting data on disability are still being standardized across multilateral actors, governments and/or NGOs.31 What is clear, however, is that disability prevalence is higher in developing countries where factors such as malnutrition and disease, environmental hazards and industrial accidents, inadequate access to preventive medicines such as vaccines and armed conflict and civil war are more widespread. Poverty and disability are closely linked across the continent. Most youth with disabilities are part of a vicious circle of exclusion from schools, exclusion from employment due to a lack of training and skills and a reliance on charity and begging for survival.32 All these factors combined lead to marginalization and isolation permeated with social stigma, which is often reinforced by cultural norms that explain disability as a curse for wrongs in a past life or other such punishment to the person or his/her family. Though I did not have detailed insight into the socio-economic status of the members of the AYWDN, it was clear that many (though not all) of these young people had benefited from 193

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better access to education, quality medical care and a higher standard of living than statistical reports suggest is the norm. It also was evident, however, that within the group there were variations in terms of level and quality of education attained as well as marked differences in socioeconomic status. Some members appeared to be from well-off families or had benefited from international charities such as Leonard Cheshire Disability. Others experienced poverty on a daily basis. One participant acquired his disability from a polio vaccine that had expired. Another acquired both a physical and psychosocial disability as a result of the civil war in Liberia, which also disrupted an entire generation’s ability to attend school regularly. One young woman from West Africa explained how her family lived in poverty with no resources to access the medical procedures she needed for the correction of a urogenital condition. One young man was a blind rapper with a fan base in Kenya and access to technology that made the Internet and musical industry software accessible. Another young man had been rejected by his father because he was born deaf, but has gone on to become part of a leading disabled youth activist group in Tunisia, which was invited to assist in writing legislation around the new Tunisian Constitution to advise on language that would prohibit discrimination against people, especially youth, with disabilities.

Seray and Frank: African Youth with Disabilities Defining Digital Activism The definition of activism, defined in the traditional sense by concrete actions such as campaigns, marches and protests, has changed dramatically with the advent of digital technology. The Arab Spring and the Occupy Movement are two recent examples of how changes in the media environments have affected society and traditional forms of activism. Mohamed Zayani, a media and politics scholar who has studied the digital aspects of the Arab uprisings, has emphasized that while the growth in public access and intense use of various forms of information and communications technologies are eroding state control over political (and civic, social and cultural) life, the real change is in the nature of engagement, i.e. how new ways of creating, consuming and acting on media-based information have reconfigured the relationship between citizen and state.33 The historically tried and tested bag of activists’ tools from various rights’ movements around the globe still is relevant, but over the last decade digital technology has proven to be instrumental for the rapid organization of protests, for capitalizing on fleeting moments in which action may prove most effective and for expressing dissent in new, virtual spaces.34 While technology may now be an indispensable part of activism, Zayani, among other scholars, has concluded that while digital activism is important, it is not alone sufficient to bring change. In examining the post-revolutionary dynamics in Tunisia, Zayani concluded that “the most effective and most enduring initiatives are those that combined online and offline activism.”35 It is within those spaces melding online and offline activism and their combinations in innovative ways that the notion of the digital divide is being challenged. In the case of Seray, the young man mentioned above from Sierra Leone, digital activism most recently has taken the form of citizen journalism. Seray first engaged in disability rights activism in 2009 though Leonard Cheshire Disability on a project using media advocacy and campaigns toward the ratification by Sierra Leone of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Thanks to work by Leonard Cheshire, Seray and many others, Sierra Leone ratified the Convention in 2010, though implementation remains challenging. The AYWDN, whose members were all required to have extensive knowledge of the UNCRPD, allowed Seray to gain new perspectives about disability rights across Africa, which varied from the situation he experienced in post-civil war Sierra Leone. He noted both experiences taught him that “right holders must take the lead in promoting their rights and bring change to their societies.”36 He then stopped searching for a job that someone else would grant him and focused on building the Sierra Leone chapter of AYWDN, creating his own job and jobs for other youth with disabilities. 194

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Seray’s foray into citizen journalism came as the result of attending a training course on media development hosted by On Our Radar, a small team of UK-based journalists, former development aid workers, software architects and digital storytellers, who work to bridge the digital divide by bringing affordable and effective ICT solutions, often in the form of innovative mobile-phone use, to marginalized groups. This gives the members of these groups the ability to engage with policy makers, journalists and the general public in innovative ways. On Our Radar trained a first group of citizen journalists ahead of Sierra Leone’s 2012 general elections with the aim of having them exercise their new skills reporting about the elections, especially from more far-flung polling stations, on issues the mainstream media tends to overlook such as accessible voting booths and procedures that accommodate people with physical and sensory disabilities. Seray had heard rumors that the National Electoral Commission (NEC) of Sierra Leone was planning to drop a tactile voting system, which would have allowed the nation’s blind and visually impaired voters the ability to vote independently without assistance for the first time.37 Armed with a simple mobile phone, Seray and other young activists visited several polling stations on election day, confirming that the tactile ballots, which had been funded by international donors, were missing. Using his citizen journalist training, Seray texted messages with critical details about the lack of tactile ballots to On Our Radar’s hub in London, where editors turned them into a blog post that was picked up by—among others—the European Union Observation Mission, which raised the issue in its official report on the Sierra Leone election.38 Seray and On Our Radar founder, Libby Powell, also co-wrote an article that appeared in the Guardian about NEC failures as a violation of Sierra Leone’s commitments as a UNCRPD signatory, which mandates that governments provide voting procedures, facilities and materials that are appropriate and accessible for all voters.39 Since Seray’s initial breakthrough as a citizen journalist, he has gone on to further bridge both the digital and disability divide by using his skills in an SMS project with the Enhancing the Interaction between Citizens and the State in Sierra Leone (ENCISS) Programme, an initiative of UKaid and the European Union with a focus on improving accountability and strengthening citizens’ voices, participation in decision-making and access to information. It is interesting to note that though he has a presence on Facebook, he rarely posts to his personal account and admits that he does not use Facebook or Twitter regularly at this point in time. However, most recently he has provided SMS coverage of the Ebola epidemic for On Our Radar, providing local, real-time knowledge of the crisis. Additionally, he has worked on a mobile app for a sensitization project on Ebola. In addition to showing that ICT and digital activism can be used to enhance civic empowerment, Seray’s contributions dispel much of the criticisms made about citizen journalism, such as that it lacks integrity and quality and provides a false sense of participation to the citizen reporters.40 Seray’s case supports Mick Temple’s suggestion in his 2013 piece on citizen journalism that “online citizen journalism adds to the plurality of information available in the public sphere” by providing the “opportunity for effective engagement with political issues by far more participants,” including but not limited to youth with disabilities.41 Seray himself also views his current trajectory as one in which he has control and that is not subject to outdated charity model dependency. About youth with disabilities, he says: “We now know we are the architects of our lives and can create what we want in life and society.”42 For Frank in Zambia, the path of digital activism has led him not to citizen journalism but to a leadership role in an organization focusing specifically on the rights of deaf and hard of hearing people. Frank, who is deaf, uses Facebook and email blasts to reinforce the traditional tools used by activists such as press conferences, letters to ministers and government offices, including the Electoral Commission of Zambia. As director of Zambia Deaf Youth and Women, a disabled persons organization in Zambia’s Copperbelt Province, Frank has garnered attention from officials working on elections and education policy. His focus has been on the inclusion of deaf persons 195

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in the 2016 Zambia presidential and general election, and he has sought to train deaf persons to provide voter education sessions and in sensitizing the electorate and other stakeholders to the needs of deaf persons to join in all electoral processes. He uses Facebook posts to stir up excitement around various issues such as frustration at the exclusion of deaf teachers at educational fora or enthusiasm among deaf youth at receiving a voter registration card. As a recipient of a scholarship to attend the year-long full-time Master of Laws (LLM) program in International and Comparative Disability Law and Policy affiliated with the Center for Disability Law and Policy at the National University of Ireland Galway, Frank has received more formal academic training on disability rights, law and policy than most of the youth who made up the AYWDN. This LLM program seeks to produce a first generation of scholars skilled in the growing field of disability law and policy with an opportunity to engage in a critical focus on issues of disability rights issues, such as legal capacity, independent living, access to justice and inclusive education. Frank’s formal LLM studies allowed him to channel his passion for disability activism in useful directions with the goal of working together with policy makers to bring about systemic change. For Frank, this appears mostly to be in the form of writing letters to officials and media outlets, which are sometimes then posted to or mentioned on Facebook. In addition to campaigning to make voting accessible for deaf persons, Frank has also been vigilant in informing the Zambia National Broadcasting Corporation by letter and by garnering newspaper coverage that they have infringed on deaf persons’ rights by not providing closed captioning or other such options in all newscasts and education programming as required by the federal disability act. Frank’s use of digital technology for activism appears to lag behind the methods used by Seray and On Our Radar, however, and may be more representative of the digital divide and in turn, the “disability divide.”43 His use of social media lacks the intricacy and targeted reach that could prove powerful in attracting attention of the larger public, but he also explained that low literacy rates, prohibitively costly Internet access and a lack of familiarity with social media are factors that have a significant effect on activists’ use of ICT for digital activism directed to domestic audiences.44 In addition, Zambia Deaf Youth and Women does not have its own Facebook group or Twitter handle. All information is posted on Frank’s personal account, which limits its impact since you have to scroll through personal and often incoherent posts from friends to get to the content about voters’ cards for deaf youth or disappointment with procedures of the Ministry of Education. More and targeted ICT and media literacy training as it applies to digital activism could be beneficial for Frank to move to the next level as an activist and to use tools at hand to bridge the disability divide.

Conclusion For young activists with disabilities, especially those with limitations to mobility, the Internet and social media have been hailed as tools for overcoming impediments or domination.45 The anonymity of the Internet and social media allow youth to escape isolation and stigma by not revealing their disabilities unless desired. For the AYWDN members who have become activists, however, their disabilities most likely strengthen their abilities to speak about discrimination and lend legitimacy to their digital activist goals promoting disability rights. Though some scholarship, such as that by Goggin and Newell,46 suggests that the digital divide serves to reinforce the unequal status of people with disabilities in society, African youth with disabilities, especially sensory disabilities and mobility impairments, may not face the same barriers to digital technology as youth in other parts of the globe. This can be attributed to the widespread penetration of low-cost mobile technology employed by savvy business schemes, which recognized a niche in the telephony market by which even people on the lower end of 196

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the socio-economic scale are able to afford mobile phones. The unique position of mobile-phone technology on the African Continent has allowed activists who may not usually have access to the platforms where activism might occur in both the traditional and digital sense. Given Africa’s unique situation regarding access to digital technology, especially mobile applications, the lack or underdevelopment of digital activism among youth with disabilities stems most likely not from a digital divide related to disability, but a low level of understanding and education on how these digital devices can be used as tools for activism. We have looked here at how digital activism has been a powerful instrument in Sierra Leone’s elections and in the Ebola crisis. We also have seen how it may have been used more professionally in Zambia to add value to older activism methods such as press conferences and open letters. As the disability rights movement evolves, the use of digital technology, which is unprecedentedly accessible to the vast majority of Africans, will be an essential prerequisite for the movement to embrace if it is to have lasting impact on the lives of the 81 million disabled people on the continent.

Notes 1 ITU, ICT Facts and Figures 2017 (Geneva: International Telecommunication Union, 2017), www.itu.int/ en/ITU-D/Statistics/Documents/facts/ICTFactsFigures2017.pdf. 2 Nate Anderson, “Tweeting Tyrants Out of Tunisia: Global Internet at Its Best,” Wired, January 14, 2011, www.wired.com/2011/01/tunisia. 3 Guido Ghedin, “Social Media in Africa: When Activism Drives the Trends,” Digital in the Round Blog, September 25, 2013, www.digitalintheround.com/social-medi-africa-activism. 4 Hayes Mabweazara, “Mainstreaming the Dynamics of African Digital Cultures, Practices and Citizen Engagement,” African Journalism Studies 36, no. 4 (2015): 1–11. 5 Herman Wasserman, “Foreword,” in Digital Activism in the Social Media Era: Critical Reflections on Emerging Trends in Sub-Saharan Africa, ed. Bruce Mutsvairo (London: Palgrave Macmillan, 2016), v. 6 Linda Herrera and Rehab Sakr, “Introduction: Wired and Revolutionary in the Middle East and North Africa,” in Wired Citizenship: Youth Learning and Activism in the Middle East, ed. Linda Herrera with Rehab Sakr (New York: Routledge, 2014), 3. 7 Evgeny Moroz, “Afterword to the Paperback Edition,” in The Net Delusion: The Dark Side of Internet Freedom (New York: PublicAffairs, 2011), 331. 8 “In much of sub-Saharan Africa, mobile phones are more common than access to electricity,” Economist, November 8, 2017, www.economist.com/graphic-detail/2017/11/08/in-much-of-sub-saharan-africamobile-phones-are-more-common-than-access-to-electricity. 9 GSMA, The Mobile Economy Africa 2018 (London: GSMA, 2018), 2, www.gsma.com/mobileeconomy/ africa. 10 GSMA, Mobile Economy Africa 2018, 11. 11 Jonathan Donner, After Access: Inclusion, Development, and a More Mobile Internet (Cambridge, MA: MIT Press, 2015), 53. 12 Kerry Dobransky and Eszter Hargittai, “The Disability Divide in Internet Access and Use,” Information, Communication & Society 9, no. 3 (2006): 313–334. 13 Dobransky and Hargittai, “The Disability Divide,” 314. 14 Kerry Dobransky and Eszter Hargittai, “Unrealized Potential: Exploring the Digital Disability Divide,” Poetics 58 (2016): 18–28. 15 Darren Waters, “Africa Waiting for Net Revolution,” BBC News, October 29, 2007, http://news.bbc.co. uk/2/hi/technology/7063682.stm. 16 Kimberly O’Haver, “Young People with Disabilities in Africa Challenge the Status Quo,” Open Society Foundations: Voices, December 5, 2011, www.opensocietyfoundations.org/voices/young-people-disabilitiesafrica-challenge-status-quo. 17 Sarah Marshall, “Citizen Journalists Report Sierra Leone Elections by SMS,” November 20, 2012, www. journalism.co.uk/news/citizen-journalists-report-sierra-leone-elections-by-sms-/s2/a551240. 18 Courtney C. Radsch, Cyberactivism and Citizen Journalism in Africa: Digital Dissidence and Political Change (New York: Palgrave Macmillan, 2016), 130. 19 Samuel C. Kamau, “Engaged Online: Social Media and Youth Civic Engagement in Kenya,” in Digital Activism in the Social Media Era, ed. Bruce Mutsvairo (London: Palgrave Macmillan, 2016), 118.

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Kimberly O’Haver 20 Frank Musukwa, “Fighting for Fairness in Africa,” Open Society Foundations Voices, July 24, 2012, www. opensocietyfoundations.org/voices/fighting-fairness-zambia. 21 United Nations, Department of Economic and Social Affairs, “Women and Girls with Disabilities,” accessed December 11, 2018, www.un.org/development/desa/disabilities/issues/women-and-girls-with-dis abilities.html. 22 ITU, “Key ICT Indicators for the ITU/BDT Regions (Totals and Penetration Rates),” ITU World Telecommunication/ICT Indicators database, 2017. 23 Guido Ghedin, “M-Pesa, MXIT, and Facebook Mobile: Welcome to the African Revolution,” Digital in the Round Blog, January 24, 2013, www.digitalintheround.com/mpesa-mxit-mobile-africa. 24 Ghedin, “M-Pesa, MXIT, and Facebook Mobile.” 25 GSMA, The Mobile Economy Africa 2017 (London: GSMA, 2017), 2. 26 ITU, “Key ICT Indicators for the ITU/BDT Regions.” 27 Libby Powell, telephone interview with author, July 27, 2015. 28 Waters, “Africa Waiting for Net Revolution.” 29 Beth Haller, “The Digital Divide: A View,” Feedback 42, no. 2 (2001): 25. 30 World Health Organization, “Disability and Health: Fact Sheet no. 352,” November, 2014, www.who.int/ mediacentre/factsheets/fs352/en. 31 World Health Organization, “Disability and Rehabilitation,” WHO Regional Office for Africa, accessed November 16, 2015, www.afro.who.int/en/clusters-a-programmes/dpc/mental-health-violence-and-injur ies/programme-components/disabilities-and-rehabilitation.html. 32 “Disability in Africa,” African Studies Centre Leiden, accessed November 12, 2015, www.ascleiden.nl/con tent/webdossiers/disability-africa. 33 Mohamed Zayani, Networked Publics and Digital Contention: The Politics of Everyday Life in Tunisia (New York: Oxford University Press, 2015). 34 Sujatha Subramanian, “From the Streets to the Web: Looking at Feminist Activism on Social Media,” Economic & Political Weekly 50, no. 17 (April 25, 2015): 71–78. 35 Zayani, Networked Publics and Digital Contention, 199. 36 Seray Bangura, email interview with author, July 21, 2015. 37 Seray Bangura and Libby Powell, “Sierra Leone Scraps Tactile Voting System for Elections,” Guardian, November 16, 2012, www.theguardian.com/global-development/2012/nov/16/sierra-leone-tactile-votingelections. 38 Powell, telephone interview. 39 Bangura and Powell, “Sierra Leone Scraps Tactile Voting System for Elections.” 40 Mick Temple, “Civic and Audience Empowerment: The Role of Citizen Journalism,” in The Media, Political Participation and Empowerment, ed. Richard Scullion, Roman Gerodimos, Daniel Jackson and Darren Lilleker (London: Routledge, 2013), 234. 41 Temple, “Civic and Audience Empowerment,” 242. 42 Bangura, email interview. 43 Dobransky and Hargittai, “The Disability Divide,” 314. 44 Frank Musukwa, email interview with the author, July 23, 2015. 45 Dobransky and Hargittai, “The Disability Divide,” 315. 46 Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowman & Littlefield, 2003).

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18 ENGAGING ACCESSIBILITY ISSUES THROUGH MOBILE VIDEOS IN MONTRÉAL Laurence Parent

Media scholars claim that the rise of mobile media has changed how they interact with the world around them and experience the everyday. Barbara Crow, Michael Longford and Kim Sawchuk argue that “wireless technology has modified both individual and public life, transforming our experiences of space, time, and place, while reshaping our day-to-day interactions.”1 Moreover, technologies that used to be reserved solely for professionals also became available to a wider public. Smartphones, which generally include powerful built-in cameras, are a good example. “Camera phones have emerged as ideal tools for capturing and sharing the visual traces of the everyday via social media,” argues Dean Keep.2 It became possible to make documentaries solely by using a mobile phone. However, this media revolution is more complicated for disabled people, as mobile media technologies are simultaneously empowering some disabled people and further marginalizing others. One of the problems that have been raised by activists and scholars is that people who use screen readers face inaccessible design. Furthermore, in Canada, the high costs of these technologies are a major obstacle for many disabled people. Canada is one of the members of the Organization for Economic Co-operation and Development, whose data plans are the most expensive.3 Since disabled Canadians are twice as likely to be in a low-income household than their non-disabled counterparts,4 they are less likely to own a smartphone. Despite these obstacles, mobile videos produced by disabled people are increasing. However, we know very little about the experiences of disabled filmmakers, let alone those working in languages other than English. The main focus of disability and media scholars has been on issues of disability representation in the media, mostly in English-speaking contexts.5 In the Western world, ableist media representations are still extremely present and fighting against them is routine to many disability activists. Considering the central role played by the media in the production of cultures, disability and media activists and scholars stress the importance of analyzing the media to understand how disability is defined and reproduced.6 Katie Ellis and Gerard Goggin write that “media not only matter, in their pervasiveness and power; they play an important role in the power relations and shaping of disability.”7 This chapter aims to contribute to the emerging disability and media scholarship on the work of disabled people making mobile videos. This chapter also offers important insights to anyone interested in the work of disabled media makers and activists outside the Anglophone worlds. My analysis is based on my own experiences and observations as a disabled filmmaker, graduate student and activist in Montréal, Canada. My methodological and filmmaking choices reverberate with one value shared by many disabled academics, activists and artists—our personal experience is a valuable site of knowledge production. I will 199

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explore some of the possibilities offered by mobile videos for challenging ableism and share some reflections on the pitfalls.

A New Weapon of Resistance in My Activist Toolkit I became actively involved in the Montréal disability rights movement in 2006, which was just before the proliferation of mobile media technologies. At that time, I had a flip phone that I could only use to make phone calls. Most of my activism consisted of attending meetings and sitting on various committees. In 2009, I co-founded the disability rights organization Regroupement des activistes pour l’inclusion au Québec (RAPLIQ) with three other disabled activists. Unlike other established disability organizations, we did not have any funding. Therefore, we relied on our own personal resources. For example, instead of having an office and working together in the same physical space, we worked from our respective homes and communicated by email. As we were fighting our first battles, the use of mobile and social media was on the rise. We noticed that the Québec disability rights movement had not made much use of these new technologies to bring disability issues to the attention of the public and the media. We decided to be active on that front. In the first year of RAPLIQ’s existence, I made a few videos, with the assistance of my filmmaker friend Joëlle Rouleau, about issues that RAPLIQ was working on. At the time, I needed Joëlle to make films for three main reasons: I did not own any filming equipment; that equipment was too heavy for me to carry alone; and I did not have her filmmaking skills. To shoot footage from my perspective, we tried to attach her camera to my wheelchair. However, the camera could not absorb the constant impact of the uneven sidewalks on my wheelchair. The footage was unsteady and shaky, and the risk of the camera falling from my wheelchair and breaking was too great. Furthermore, regulations prevented us from using our bulky equipment to film in spaces like the metro. It was clear that I needed to get a smaller device for shooting videos. When my flip phone contract came to an end in August 2011, I decided to get my first smartphone. A few weeks later, I was denied access to a bus due to a ramp malfunction. As soon as the driver told me I could not get on his bus, I started filming discreetly with my smartphone without drawing attention to the device. After all, I was not holding a camera but a phone. I asked the driver a few questions about the ramp and the procedure in the event of a malfunction, something that has been a recurrent problem since I started using buses in 2002. For the first time, I was able to capture a situation I had previously experienced hundreds of times. As the event was unfolding, I already knew I would post my video online to denounce the bus’ lack of access. It felt incredibly empowering. After the bus left, I embarked on a six-kilometer wheel to my home. On a quiet street that I had wheeled on thousands of times, I took out my phone again and resumed filming. I explained that the nights were starting to get cold in Montréal, making it harder to get around without proper accessible transportation. “It’s only September 15, and my fingers are frozen already. The inaccessibility of buses is also a real problem for the safety of those who are excluded from them,” I explained, my voice trembling because of the cold and the uneven ground.8 The image was shaky, but the message was, I believed, quite powerful. Once at home, I put into practice the skills I’d learned while working with my friend Joëlle. I edited the video, added music to evoke a sort of nostalgia and repetition, added text on a black background to explain the issue, partially captioned the video and uploaded it on RAPLIQ’s YouTube channel. I also posted it on my personal Facebook page. Without any sort of planning or assistance, I had just made my first short mobile video. To my knowledge, this video was the first visual piece of evidence made by a disabled person available online that documented the discrimination experienced by wheelchair users on city buses in Montréal. From that moment on, my smartphone became an essential weapon of resistance in my activist toolkit. 200

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My first mobile videos pretty much overlap with my first experiences speaking with the mainstream media. When RAPLIQ started organizing protests and publishing press releases on newswires, radio and television journalists began interviewing me on a regular basis. We quickly noticed that it was much easier to get media coverage in the Anglophone media than in the Francophone media. On the morning of September 29, 2011, I was with RAPLIQ in the metro, protesting the inaccessibility of the underground transit system. A fair number of journalists from Anglophone media sources showed up. I decided to make a short video with my smartphone to briefly explain what was going on, and I pointed out the lack of Francophone media coverage of our protest.9 I posted the video on YouTube and invited people to share it on social media. Journalists from Francophone media finally showed up to cover our direct action. However, it is difficult to know if my video had a direct impact on their presence that morning. Another problem we faced in terms of media coverage was that we did not have much control over what would be said and written about us. Through my interactions with journalists, I soon realized that many of them had a limited understanding of disability issues, and ableist language was the norm. For example, on numerous occasions, I was described as being “wheelchair-bound.”10 Furthermore, I felt like some of the reporters were awkward with me. Chances are I was the first disabled person they had ever interviewed. In addition, these journalists were often working on tight deadlines and did not have time to dig into the complexity of our stories. Making our own videos turned out to be a strategy to gain media coverage, share stories ignored by the media and produce more representative stories countering ableist discourses.

Cripping Mobile Filmmaking Despite the numerous advantages to shooting videos with my smartphone, there were some limitations. Filming in cold weather was difficult; my fingers would be numb after only a few minutes. The stability of the image was also an ongoing issue, as I was often in motion when filming. Wheeling on uneven sidewalks and streets made it almost impossible to shoot videos that did not feel like a rollercoaster for the viewers. I was also limited in terms of the length of the footage I could capture, because filming for long periods would drain my phone’s battery. It was also a problem when I needed to use my smartphone to find information online or make a phone call, which was likely to happen when encountering obstacles. I could not record and make a call at the same time, so I had to interrupt the recording process. In 2012, I bought a GoPro camera to address some of these issues. GoPro cameras are miniature high-definition cameras that can be mounted to a body part or a device. This extra portable video recording device was initially made for extreme-action videography.11 D. Andy Rice suggests that the “company seems unaware of—or actively hostile to—the political possibilities of using the technology to represent the everyday lives of persons with disabilities.”12 None of GoPro’s branded videos featured disabled people.13 Therefore, it is not surprising that I had difficulty finding GoPro accessories that matched my needs as a disabled filmmaker. The main challenge I faced was finding a way to mount the camera somewhere on my wheelchair. I first experimented with this technique on a trip to Toronto with my friend Joëlle. I recorded footage of our strolls in the city, which included riding the subway and the buses. The image stability was much better than it had been with my smartphone, and I could record up to 60 minutes of footage. The camera was attached on my footrest structure, which was significantly lower than my eye level (Figure 18.1). However, I was not able to attach the GoPro by myself, because it required too much physical strength to do so. I eventually decided to mount the camera on my wheelchair’s right handle, which is at shoulder level, to get a perspective that was closer to mine. This had the effect of including me in the camera frame. My right arm and shoulder occupied the left side of the frame, making me visible to the viewer. At first, I was not sure about this 201

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choice but I gave it a try. I made Cripping the Landscape 1: Québec City, my first mobile documentary shot entirely with my GoPro camera, without someone else’s technical assistance.14 It is a 13-minute video chronicling a 5-kilometre journey from Laval University to the Sainte-Foy train station in Québec City. As I wended my way to the train station, I exposed moments of danger. There was no accessible bus or accessible taxi. At some intersections, I was unable to reach the pedestrian crossing button (Figure 18.2). The number of obstacles was overwhelming. In turning the viewer’s gaze towards Québec City’s ableist landscape, I aimed to undermine the power structures that contribute to reinforcing the normalcy of these inaccessible public infrastructures. I chose the term “cripping” to indicate my position as a disabled filmmaker engaged in the uncovering of compulsory able-bodiedness in media representation and discourses about accessibility. According to organizers of the “Cripping” of Comic Con, the term “cripping” may be understood as a way for disability-identified people and their allies to assert control and social power, write Emily Hutcheon and Gregor Wolbring.15 Carrie Sandahl defines cripping as “spin[ning] mainstream representations or practices to reveal able-bodied assumptions and exclusionary effects.”16 By making my wheelchair an integral part of my creative practice, and including my disabled body in the camera frame and therefore exposing its interactions with the ableist landscape, I engaged with crip aesthetics.17 Many of my reflections about Cripping the Landscape 1: Québec City occurred after the completion of the film. Every time I showed my video at an event, I received many positive comments about my filmmaking approach, including the appearance of my body in the camera frame. These comments had two different effects on me. On one hand, I felt validated as a filmmaker. It seemed like I had found a promising aesthetic. On the other hand, I felt wary, because some people argued that my video enabled them to experience the world as I experience it. In fact, when I watch my video, I have a different experience. There is a gap between what I shoot and what I feel. My video is certainly not a disability simulation, a practice I oppose as an activist and as a researcher. Disability simulations are regularly used to raise awareness about accessibility. For example, non-disabled people could be invited to spend a day in a wheelchair to better understand what it means to be a wheelchair user. Late disability rights activist, comedian and journalist Stella Young argued that “disability simulation fails to capture the nuance and complexity of living in a disabled body. And it certainly fails to give a deep understanding of systemic discrimination and abuse faced by disabled people.”18 I suggest that there is a thin line between disability

Figure 18.1 Screenshot from Cripping the Landscape 1: Québec City, directed by Laurence Parent (Québec: m.i.a media production, 2013), showing that when the camera is attached to the wheelchair’s footrest structure the view is significantly lower than the user’s eye level.

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Figure 18.2 Screenshot from Cripping the Landscape 1: Québec City, directed by Laurence Parent (Québec: m.i.a media production, 2013), shows a pedestrian crossing button out of reach to a wheelchair user. A written caption on the image reads “Danger: Inaccessible pedestrian crossing button.”

simulations and new creative filmmaking styles developed by disabled filmmakers. D. Andy Rice shares the story of a group of students in his disability studies and urban planning class at the University of California in Los Angeles. For their video project, Tomas, one member of the group who walked with a crutch, wore a GoPro camera on his chest and filmed his commute to the university from his home. “By repurposing wearable recording systems marketed to extreme sports enthusiasts, my case study suggests that persons with physical disabilities can shoot footage of their everyday lives that compels viewers to imaginatively embody an approximation of their phenomenological experience” Rice writes.19 “In screening these shots in class as raw footage, we collectively experienced the striking sensation of moving at Tomas’s everyday pace,” he adds.20 Even if Rice makes it clear that the use of a wearable camera by one of his students was done not to elicit pity but to develop empathy, I cannot help but feel the risk of falling into a disability simulation trap. However, Rice makes an interesting point about the potential of raw footage shot by disabled people to subvert the dominant aesthetic in mobile videos. “Representing duration in living with a disability, in the context of a social media economy that valorizes speed, can be both a politics of resistance and a means for creating new forms of cinematic empathy,” he explains.21 The creative approach developed by Rice and his students can definitely be considered as an important contribution to crip aesthetics.

The Bumpy Road to Anti-Ableist Mobile Video Practices and Social Media Even though mobile video technologies undoubtedly open up new possibilities for disabled people, filmmakers and activists, they also raise important issues. Through my experience in Montréal, I have encountered or observed problematic practices that I will briefly explore here. Increasingly, mainstream media relies on video footage shot by ordinary people who happen to witness newsworthy events long before journalists arrive at the scene. Rabia Noor writes that “citizen journalism holds potential benefits as a source of news. It proves to be useful to bring to the fore the stories that are inaccessible to professional journalists.”22 Thanks to the wheeling interviews I conducted for my doctoral research, I have shot more than 30 hours of footage in the streets of Montréal. I have collected an important amount of visual material that documents the exclusion of numerous disabled people in the city. In September 2015, a journalist working for a mainstream newspaper contacted me about a story on the lack of accessibility at construction sites

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in Montréal. She already knew me because of my work as an activist. I talked to her about my doctoral project and the interviews I had been doing over the summer. She asked me if I had pictures of some of the obstacles. I happily went back through my footage and sent her numerous stills from my videos. We agreed that I would be given a photo credit if the photos were published. The following day, I noticed that two of my photos were on the front page of the newspaper, but I was not given credit for the images in either the paper itself or the online version.23 I contacted the journalist. She told me she would be able to make the change for the online version, but, due to legal reasons, they never credit people in the paper edition who are not employees of the newspaper. Even though I was thrilled that my work appeared in a mainstream newspaper, I felt uneasy about not receiving due credit. A similar situation happened when I spent a day with a television team; the crew wanted to shoot a short documentary about my everyday experiences in the city. As they were struggling with the legal restrictions on filming on public transit, I told them about my filmmaking approach and how I use the GoPro. They enthusiastically decided to use this approach and ended up not giving me any credit for it. Disability activists are still fighting to have their expertise and work valued. This is particularly true in the media industry where disability activists are still underrepresented.24 At the same time, they are also strategically producing mobile videos that increase their visibility in mainstream media—as I have done. For example, Katie Ellis, Gerard Goggin and Mike Kent explain how the UK disability activism movement used digital technologies—social media in particular—to advocate against the welfare and work reforms that affected disabled people.25 They argue that the availability of YouTube videos made by disabled people and their allies have contributed to bringing these issues into the mainstream media. For example, in a report on the impacts of budget cuts, as well as on police brutality against disabled people, a mainstream British television station used a video posted on YouTube that depicted the police assault on Jody McIntyre during a 2010 student protest against tuition fee hikes. I think it is important to point out what seems to be a major difference between a mobile video shot by a “citizen journalist” at a specific event and a mobile video that required work and research for the maker. As a disabled filmmaker and an emergent scholar, I face a two-fold issue: I want my work to be available to the widest possible public, but I also want the value of my work to be acknowledged. This raises important questions about ethics and labor. Disabled people’s creative approaches to filmmaking and media work are constantly at risk of being appropriated without credit by mainstream media. There is a danger in overlooking these issues as we—disabled activists, artists, scholars and allies—work tirelessly to get better media representation and access to media production. Getting mainstream media attention when making mobile videos is also a challenge for disability activists. Here I am particularly interested in the work produced by what Axel Bruns calls a “produser.” The term produser is a combination of “producer” and “user,” which describes the reality of many amateur digital media users who have become both consumers and producers of media content.26 Laurent Morissette, a disabled Montrealer who uses a motorized wheelchair, can be identified as a produser. He is also a board member of RAPLIQ and spokesperson for the organization. Since 2014, he has given numerous radio and television interviews to comment on disability issues mostly related to physical accessibility. Morissette regularly uses Twitter and Facebook to share his experiences of navigating Montréal’s public transit system. On August 31, 2017, he posted a six-minute video on his personal Facebook page and on the Facebook group Transport mésadapté. In the video, he speaks directly to Philippe Schnobb, president of the Société de transport de Montréal, and demands better service after being denied access to a bus due to a broken ramp.27 He shot the video while waiting for the next bus. Morissette faces the camera and seems to hold it with one hand. All we can see is his face and part of his upper body, since he holds his phone only a few inches away from him. 204

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On October 21, 2016, Mikael Theimer, a non-disabled man who works as a freelance photographer, posted a video on his Facebook page and the Transport mésadapté page.28 Theimer implores Philippe Schnobb to improve paratransit service for disabled people. In the video, Theimer is with his friend Michel Pépin, a disabled man who uses a motorized wheelchair and relies on paratransit to get around. Theimer explains that they had been waiting for Michel’s ride, only to be told that they had missed it. However, Theimer and Pépin had been waiting in the entrance of a building because it was cold and rainy outside. Like Morissette, Theimer faces the camera as he holds it in one of his hands. However, the distance between his body and the camera is greater than in Morissette’s video, and Theimer’s mobility allows him to change the camera’s angles as he speaks, stands up and walks between the exterior and the interior of the building. For most of the video, Pépin can be seen in the background while he waits inside the building. Towards the end of the video, Theimer asks Pépin for his thoughts regarding the situation. In turn, Pépin invites the president of the Société de transport de Montréal to act. His intervention is short. Overall, Morissette’s and Theimer’s stories have a lot in common. Where Morissette’s and Theimer’s videos set themselves apart the most is in terms of standpoints and number of views. Theimer embodies the figure of the young and healthy able-bodied white male, while Morissette’s disability is obvious. Theimer’s movements and speech match with bodily norms, while Morissette’s do not. Furthermore, because of his career as a well-known photographer in the city, it is certain that Theimer has more contacts in the media than Morissette. The video posted by Theimer got the attention of the Journal de Montréal, the largest-circulating newspaper in Québec.29 The fact that the newspaper article included a link to Theimer’s Facebook video certainly boosted the number of views. Morissette’s Facebook video got 335 views, while Theimer’s got 8,699. The difference is significant. The Journal de Montréal’s article also included a quote from Theimer, who was, after all, the person telling the story. Pépin’s presence was made secondary. Even though I believe Theimer genuinely tried to be a good ally to his disabled friend and the local disability community, his video fits with ableist representations of disabled people in the news, representations that are described and critiqued by disability activists and scholars. It is still common for media to privilege the voices of nondisabled people over those of disabled individuals to tell our stories.30 It is important to note that as of today, Morissette’s numerous videos documenting his experiences in public transit have not received any attention from the media, even though many of them are quite dramatic. For example, one video shows Morissette stranded in the harsh winter conditions of Montréal due to inaccessible buses. This brief comparison between Morissette’s and Theimer’s videos suggests that disabled people’s stories made and shared on social media by disabled produsers are less likely to be covered by mainstream media than videos about the very same issue made by non-disabled people. Obviously, it will require further research to better understand the prevalence of this inequality. Finally, as much as I believe in the power of mobile technologies and social media for disabled people to enact social change, I must acknowledge that my experience in the Montréal Francophone disability community suggests that mobile videos made by disabled French-speaking people are still scarce, even though a growing number of disabled French-speaking people now own smartphones. For example, on Transport mésadapté (Maladapted Transit), a Facebook group created in 2014 that has become a new space for disability activism in Québec, members prefer to share their stories about their experiences in the city’s public transit system in writing.31 Moreover, many disability rights organizations based in Québec are still resisting the emergence of digital disability activism. In the English-speaking world, many disability activists have shared videos about their lived experiences and organized campaigns on social media based in large part on the use of video. Even though these videos are mostly filmed in people’s homes, they are often recorded on mobile phones and they are mobile in their dissemination through cyberspace. 205

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In the United States, we can think about the #LiveOn campaign, which was developed by the Center for Disability Rights based in the state of New York.32 The campaign was a video series that aimed to prevent suicide among disabled people. Disabled people themselves were invited to record their stories with a smartphone and post them online to help their peers. In Canada, Project Value was created in the wake of the new Canadian bill legalizing assisted suicide.33 With their smartphone or other recording devices, disabled Canadians recorded stories explaining why their lives have value. Even though Canada is officially a bilingual country, all stories posted on this initiative’s Facebook page were in English.34 This imbalance can probably be explained by the fact that the call for videos was solely in English. This speaks to the existing divide between Anglophone and Francophone communities in Canada, as well as the greater access available to English-speaking disabled people to share their stories across large audiences, which include nonAnglophone people who are able to communicate in English—such as myself. Videos produced by Francophones do not travel as much. I experience this difference myself every time I share a video in French. I know that it will not be seen and shared by my English-speaking friends and colleagues who have no knowledge of my mother tongue. Of course, there is a potential for collaboration between Francophone communities in countries such as France, Belgium, Haiti and numerous African countries. However, these collaborations are in their infancy and cannot be compared with the existing flow of communication and knowledge sharing among disabled people in English-speaking communities.

Conclusion Katie Ellis and Gerard Goggin ask the question: “What is the potential of new digital technologies and cultures to establishing a more diverse, rich, and just media?”35 It is with this question in mind that I wrote this chapter. Like numerous disabled people around the world, the proliferation of mobile media has radically changed how I engage with disability activism and filmmaking.36 This question also influenced deeply my work as a researcher. In fact, for my doctoral project, I conducted wheeling interviews with 23 disabled people in New York City and Montréal. GoPro cameras were mounted on my wheelchair and on the participant’s wheelchair (if they had one). Since the interview component was central to my project, I also used two audio recorders to get better sound quality. The complexity of my filmmaking equipment forced me to address several technical issues and challenges along the way.37 Through trial and error, the participants and I figured out which devices and arrangements would best suit our needs and abilities. The filming became a shared responsibility with the participants. Together, we cripped methods and filmmaking. In this chapter, I shared some of my experiences with mobile video from my perspective as a Francophone disabled filmmaker, activist and graduate student living in Montréal, Canada. I explored some of the possibilities offered by mobile videos and social media to challenge ableism, as well as some of the pitfalls I encountered and observed along the way. As previously mentioned, to date, outside the Anglophone worlds, very little research has been conducted (or published) on disability and the media. Considering the relationship between media and culture, this gap is alarming and needs to be addressed. The Anglophone literature about disability and media is clear—obstacles preventing disabled people from engaging with filmmaking persist. The issue here is not so much about finding ways to accommodate disabled people but to support those who are engaged in cripping filmmaking and mobile media. The Disability Visibility Project (DVP)—founded by disabled activist and media maker Alice Wong, who is based in San Francisco—is a great example. DVP is an “online community dedicated to recording, amplifying and sharing disability stories and culture.”38 This kind of online community still does not exist in the Francophone world. In Canada, Accessible Media Inc. (AMI), a not-for-profit media 206

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organization producing accessible television content, aims to “establish and support a voice for Canadians with disabilities, representing their interests, concerns and values through accessible media, reflection and portrayal.”39 AMI-Télé, the French-language channel of AMI, was launched in 2014. Despite the channel’s commitment to covering disability issues and producing accessible content, all decision makers, such as directors and producers, are non-disabled. This is reflected in the content: many stories promote ableist representations of disability. A lot of work needs to be done in my community to uncover these power relations and to recognize disabled people as media makers. As disabled media makers are showing us through powerful projects such as the Disability Visibility Project, it is time to crip filmmaking and media making in general. En français aussi.

Acknowledgments I wish to acknowledge the financial support of the Fonds de recherche du Québec—Société et Culture in the preparation of this chapter.

Notes 1 Barbara Crow, Michael Longford and Kim Sawchuk, eds., The Wireless Spectrum: The Politics, Practices, and Poetics of Mobile Media (Toronto: University of Toronto Press, Scholarly Publishing Division, 2010), 3. 2 Dean Keep, “Artist with a Camera-Phone: A Decade of Mobile Photography,” in Mobile Media Making in an Age of Smartphones, ed. Marsha Berry and Max Schleser (New York: Palgrave Pivot, 2014), 23, https:// link.springer.com/chapter/10.1057/9781137469816_2. 3 Tristin Hopper, “Why Canadian Cell Phone Bills Are Among the Most Expensive on the Planet,” National Post, September 18, 2017, http://nationalpost.com/news/canada/why-canadian-cell-phone-bills-areamong-the-most-expensive-on-the-planet. 4 Statistics Canada, “Low Income Among Persons with a Disability in Canada,” August 11, 2017, www.stat can.gc.ca/pub/75-006-x/2017001/article/54854-eng.htm. 5 D. Andy Rice, “A Phenomenology of Media Making Experience: Disability Studies and Wearable Cameras,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 203–215. 6 Katie Ellis and Gerard Goggin, Disability and the Media (New York: Palgrave, 2015). 7 Ellis and Goggin, Disability and the Media, 14. 8 Laurence Parent, “Problème d’accès #88-Discrimination et Autobus de La STM 101,” YouTube (Montréal, 2011), www.youtube.com/watch?v=Sg_kl_yzu7E. 9 RAPLIQ, “Le RAPLIQ Est Pris Dans Le Métro de Montréal! Sortez-Nous de d’là … Avant 2085!,” YouTube (Montréal, 2011), www.youtube.com/watch?v=RlaMxk7uqgU. 10 CTV Montreal News, “Wheelchair Access a Problem in Montreal,” September 14, 2010, http://montreal. ctvnews.ca/wheelchair-access-a-problem-in-montreal-1.551919. 11 Laurence Parent, “The Wheeling Interview: Mobile Methods and Disability,” Mobilities 11, no. 4 (August 7, 2016): 521–532, https://doi.org/10.1080/17450101.2016.1211820. 12 Rice, “A Phenomenology of Media Making Experience,” 204. 13 Rice, “A Phenomenology of Media Making Experience,” 204. 14 Laurence Parent, “Cripping the Landscape 1: Québec City,” Vimeo (Québec: m.i.a media production, 2013), https://vimeo.com/73583668. 15 Emily Hutcheon and Gregor Wolbring, “‘Cripping’ Resilience: Contributions from Disability Studies to Resilience Theory,” M/C Journal 16, no. 5 (August 20, 2013), http://journal.media-culture.org.au/index. php/mcjournal/article/view/697. 16 Carrie Sandahl, “Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance,” GLQ 9, no. 1–2 (2003): 37. 17 Jenna Reid, “Cripping the Arts: It’s About Time,” Canadian Art, May 5, 2016, http://canadianart.ca/fea tures/cripping-arts-time. 18 Stella Young, “Disability Simulations Should Be Left in the 90s,” ABC News blog, September 25, 2014, www.abc.net.au/news/2014-09-25/young-disability-simulations-should-be-left-in-the-90s/5769148. 19 Rice, “A Phenomenology of Media Making Experience,” 205.

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Laurence Parent 20 Rice, “A Phenomenology of Media Making Experience,” 209. 21 Rice, “A Phenomenology of Media Making Experience,” 205. 22 Rabia Noor, “Citizen Journalism vs. Mainstream Journalism: A Study on Challenges Posed by Amateurs,” Athens Journal of Mass Media and Communications 3, no. 1 (January 1, 2017): 55. 23 Camille Gaior, “L’enfer Des Personnes à Mobilité Réduite,” Le Journal de Montréal, accessed October 18, 2017, www.journaldemontreal.com/2015/09/29/lenfer-des-personnes-a-mobilite-reduite. 24 Canada’s Centre for Digital and Media Literacy, “Concerns About Media Representation of Disability” Media Smarts, accessed October 26, 2017, http://mediasmarts.ca/digital-media-literacy/media-issues/diver sity-media/persons-disabilities/concerns-about-media-representation-disability. 25 Katie Ellis, Gerard Goggin and Mike Kent, “Disability’s Digital Frictions: Activism, Technology, and Politics,” Fibreculture Journal no. 26 (2015), http://twentysix.fibreculturejournal.org/fcj-188-disabilitys-digital-fric tions-activism-technology-and-politics. 26 Axel Bruns, Blogs, Wikipedia, Second Life, and Beyond: From Production to Produsage (New York: Peter Lang, 2008). 27 Laurent Morissette, Un Petit Message à Mon Ami Philippe Schnobb (Montréal, 2017), www.facebook.com/ laurent.morissette/posts/10155749803736979. 28 Mikael Theimer, Message à Philippe Schnobb (Montréal, 2016), www.facebook.com/mikaeltheimer/videos/ vb.655915289/10157560932880290/?type=2&theater. 29 Journal de Montréal, “Une Vidéo Dénonce l’incompétence de La STM En Matière de Transport Adapté,” Le Journal de Montréal, October 22, 2016, www.journaldemontreal.com/2016/10/23/une-video-denoncelincompetence-de-la-stm-en-matiere-de-transport-adapte. 30 Rooted in Rights, “The Rooted in Rights Blog Is a Year Old Today” (Seattle, 2017), www.facebook. com/rootedinrights/videos/1524873387601612. 31 Laurence Parent and Marie-Eve Veilleux, “Transport Mésadapté: Exploring Online Disability Activism in Montréal,” in Disability and Social Media, ed. Katie Ellis and Mike Kent (London: Routledge, 2016), www. tandfebooks.com/doi/book/10.4324/9781315577357. 32 The Live On Movement, accessed December 9, 2018, http://liveon.net. 33 Project Value, accessed December 9, 2018, www.facebook.com/projectmyvalue. 34 In Canada, as I write this chapter, French and English are the two official languages. Canadian deaf communities have advocated for a long time for the recognition of American Sign Language and langue des signes québécoise as official languages. Indigenous people are also fighting to have their languages declared official. 35 Ellis and Goggin, Disability and the Media, 15. 36 Sarah Ruiz-Grossman, “You Don’t Have To March To Be In The Resistance,” HuffPost Canada, May 25, 2017, www.huffingtonpost.com/entry/disability-activism-resistance-alice-wong_us_59270f76e4b061d8f8201e8f. 37 Parent, “The Wheeling Interview.” 38 Alice Wong, “The Disability Visibility Project—About,” Disability Visibility Project, June 3, 2014, https:// disabilityvisibilityproject.com/about. 39 Accessible Media Inc., “What We Do,” accessed October 22, 2017, www.ami.ca/what-we-do.

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19 PAGES OF LIFE Using a Telenovela to Promote the Inclusion of Students with Disabilities in Brazil Patricia Almeida

Telenovelas in Latin America, television soap operas with a “contained story arc that ends after a few seasons” airing every week day,1 are a significant part of Brazilian popular culture and this chapter explores how one telenovela, Pages of Life (Páginas da Vida),2 used a plot about a child with Down syndrome3 to further the discussion of inclusion of children with disabilities in education.4 This telenovela is one of the most popular Brazilian telenovelas, according to IMDb ratings,5 and also based on viewing ratings published by IBOPE.6 The storyline was a major hit in the telenovela genre with episodes featuring the child with Down syndrome, with the last chapter reaching an audience of 53 rating points according to IBOPE (76 percent of TV sets in use in Brazil tuned into the channel).7 Research conducted at BEMFAM family planning clinics in 2006 and 2007 found that 83.3 percent of women viewed the show at least twice per week.8 More importantly for this chapter, further research of 201 respondents who were affiliated with FUNLAR (the Brazilian national Down syndrome association) showed that the storyline led to 72.6 percent of those surveyed reporting that their knowledge of Down syndrome increased by watching Pages of Life.9 Telenovelas have a long history in Brazil. The first one went on air, live, in 1951, twice a week. In 1963, telenovelas started to be shown every weekday night.10 In the 1970s, when TV sets became more available to the general public, telenovelas became the most watched programs by all segments of gender and age groups in Brazil.11 A 2015 representative sample study of TV viewers in 11 Latin American countries reported that telenovelas continue to be popular and ranked at number one with audiences in Brazil, Panama, Uruguay and Paraguay.12 Because of this enormous popularity, telenovelas became powerful trendsetters, leading to new slang expressions, fashion accessories or favorite haircuts. The first product placement in a telenovela was in 1973, in Steel Horse (Cavalo de Aço),13 a telenovela on TV Globo, the Brazilian network with the highest viewership. The show strategically placed a bottle of cognac, with its label turned towards the camera, so that the audience could see the main character drinking that brand. This type of product placement allows viewers to interact with a product through their favorite telenovela character.14 Similarly, the topics featured in telenovela plots are discussed in casual conversations throughout Brazil: at the dinner table, on radio shows, at work, at school. Telenovelas began to be understood as an effective way to promote all kinds of messages to the general public. In 1994, Silvio de Abreu was the first writer to intentionally include a social issue in a telenovela plot in an attempt to educate the TV audience. His telenovela The Next Victim (A Próxima Vítima)15 presented audience members with issues involving homosexuality and racial discrimination. 209

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A soap opera is educational when it raises discussions about Brazilian society to a relatively uninformed public. It raises subjects that, despite being part of everyday life, are not understood or discussed. Everyone who watches, and even those who do not watch, are led to reflect about those issues. I think soaps are one step ahead of society.16 Using a telenovela to educate an audience about social issues in society is a form of social merchandising. Social merchandising is the intentional insertion of social issues and educational messages in soap opera plots and other TV programs. As a strategy for change in attitude and for the adoption of new behavior, social merchandising is one of the most effective tools, as it reaches the audience in an entertaining way, disseminating new attitudes and practice. Social themes are tackled as an integral part of the stories, associated to characters in an educational and positive way.17 After Silvio de Abreu wrote his telenovela script about racial diversity and the LGBT community in 1994, other TV writers began using their scripts to focus attention on topics such as how to do a self-examination to detect breast cancer and explaining what HIV is, for example. In addition, the inclusion of content about these educational topics reflected well on the TV channels, illustrating their commitment to being socially responsible.

Inclusive Education in Brazil Formal education for children with disabilities in Brazil started in 1854, with the creation of the Institute of Blind Boys and the Institute for the Deaf and Dumb, in 1857 in Rio de Janeiro.18 In 1874, children with intellectual disabilities were taught at the Juliano Moreira Hospital, in Salvador, Bahia, with other schools being created mostly in Rio de Janeiro and São Paulo, Brazil’s most populated cities. In 1949, about 40 schools in Brazil enrolled children with intellectual disabilities. By 1959 the number had increased to 190, 77 percent of them public schools.19 In 1973 the Ministry of Education created a center to manage special education in the country.20 In 1988, Brazil’s new Constitution established “mandatory fundamental education, including to those who did not have access to school at a proper age, and specialized education services to students with disabilities, preferably in the general school system.”21 Nevertheless, until the 1990s, children with disabilities were mostly educated in segregated schools and did not have contact with non-disabled peers.22 In 1994, Brazilian education authorities committed to using inclusive education practices as laid out in the Salamanca Statement on Principles, Policy and Practice in Special Needs Education and a Framework for Action, which had been adopted at the UNESCO Conference in Salamanca, Spain in the same year.23 For Brazil that meant shifting disabled students from special schools into regular schools. The Brazilian education system is composed of public and private schools, with 81.7 percent of students attending public and 18.3 percent attending private schools.24 The federal government regulates the system through the Ministry of Education, which provides funding and educational guidelines. Individual states and municipalities are responsible for implementing and enforcing these guidelines.25 With over 90 percent of students with disabilities attending regular schools in 2014, compared with 13 percent in 1998, the Brazilian education system is considered a model for inclusive education in Latin America.26 The results reflect the constant action of the social movement and an open Ministry of Education in the past two decades. Nevertheless, according to experts, the quality of education needs improvement and public and private schools still have a long way to go when it comes to physical accessibility, resource rooms, trained teachers and assistants to make them effective for students with special learning needs.27 Though mandatory,28 public preschools 210

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and kindergartens have few spaces and are reportedly not prepared to include children with disabilities. Families need reassurance alongside consistent and informed support by the state and their communities.29 Teaching students with special learning needs was identified as one of the areas of greatest need for development according to teachers in Brazil, as in almost all other countries evaluated by Talis, the OECD “Teaching and Learning International Survey” held in 34 countries in 2013.30 The largest Brazilian institution providing special education, the Association of Parents and Friends of the Exceptionals (APAE), offers services in more than 2,000 districts in the country, so the idea of transitioning students with disabilities from segregated schools to the regular classrooms faced much resistance from parents, teachers and groups like APAE. Created by parents of children with disabilities in 1954, APAE was inspired by Beatrice and George W. Bemis, members of the American diplomatic service, who moved to Rio de Janeiro with their daughter Caroline, who had Down syndrome. George Bemis who had served as vice president of the US National Association for Retarded Children (later renamed the Arc),31 and Beatrice Bemis became actively involved in founding APAE’s first school in Brazil. In 1954, the association had two classes with 20 children in total. By 1962, APAE chapters from 16 different cities in Brazil joined together to start a federation. With the absence of Brazilian states to provide education for students with disabilities, the federal government started to partly fund these charitable groups. In 2013, the APAE Federation reported assistance to more than 240,000 Brazilian students, most with intellectual and multiple disabilities, in more than 2,000 school districts.32 Since the adoption of Salamanca Declaration, APAEs have resisted the idea that students with disabilities can be educated in regular schools. They accused pro-inclusion activists of what they derided as “radical inclusion” or “forced inclusion” and organized protests to fight the extinction of special schools for children with disabilities.33

MetaSocial Institute34 In 1996, inclusive education in Brazil received a boost when two mothers of children with Down syndrome formed the MetaSocial Institute. Its focus is on inclusion and building strategies to change Brazil’s attitudes toward people with Down syndrome. Helena Werneck, an architect at the time, and Patricia Heiderich, a teacher, met by chance and found they had similar challenges: finding regular schools that would accept their daughters with Down syndrome and confronting the attitudes of the general public who looked at their daughters as if they were “aliens.” They felt that the best way to try to destigmatize the image of persons with Down syndrome would be through television, due to its reach to most of Brazilian society. Werneck saw a TV ad that inspired her to focus an awareness campaign on Down syndrome. The ad showed two closed eyes, and when the eyes opened, a text read: “There is life after death—Donate your cornea.” She loved the message of the cornea donation campaign and set out to find the creator of the ad, Nizan Guanaes, one of the top advertising executives in Brazil, and asked him to help with MetaSocial Institute’s planned campaign to change attitudes toward Down syndrome.35 Werneck and Heiderich met with Guanaes and convinced him to donate his time to produce a promotional ad that showed the capacity of persons with Down syndrome by featuring a man with Down syndrome playing the piano. Werneck and Heiderich were able to get this ad aired on prime time TV for free.36 With the success of that TV spot, a second promotional ad followed in 1998; it showed two boys in a carousel, one with Down syndrome, the other not. The text said: Carlos goes to school every day, his friend does not. Carlos goes to swimming lessons every day. His friend doesn’t. Carlos has piano lessons. His friend does not. Hey. This is 211

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Carlos [image of the boy with Down syndrome]. And this is his friend [the other boy]. He is a beggar. Thousands of kids in Brazil need your help. Individuals with Down syndrome only need your respect. Down. Prejudgment is the worst syndrome.37 This campaign won a Bronze Lion at the Cannes Advertising Festival in 1999, and the song “Fake Plastic Trees,” donated by Radiohead for the commercial, was so popular that it was rereleased with a sticker saying it was the song of the commercial.38 The MetaSocial Institute went on to work with the Brazilian media regarding the inclusion of persons with Down syndrome in a variety of program formats, from miniseries to entertainment programs to news stories. The advertising agency that created the MetaSocial ads always worked pro bono, but the Institute was treated as any other client—they explained to the agency what they liked and did not like. To fund the ads, the agency asked its business clients to donate one day of filming or towards other production costs. With a professionally created promotional ad in their hands, Werneck and Heiderich went to TV stations and asked them to air it for free. With the success of the general awareness campaign, MetaSocial started a campaign in 2002 to encourage employment of persons with Down syndrome. Called “Waitress,” the ad is set in a busy restaurant where a young woman with Down syndrome is working as a server, delivering trays of food to several customers. When she is off-screen, the crash of a tray being dropped is heard. The ad then cuts to one of the non-disabled servers picking up what he had dropped. The tagline says, “You have just committed a mistake yourself. They can do much more than you imagine.”39 In 2003, MetaSocial hired another ad agency, Giovanni FCB, to create a promotional ad around the theme, “It’s Normal to be Different.” In the ad, a 15-year-old girl with Down syndrome dances up and down the hall and in her bedroom, showing off many dance moves. At the end of the ad, it says, “It’s Normal to be Different.”40 The teenager in the ad was Paula, Werneck’s daughter, who became the “face” of the campaign for many years. “It is easier to ask your own daughter to do a shoot for free, for many hours or in the middle of the night,” Werneck said.41 In 2005, Werneck and Heiderich decided to expand the campaign to cover not only other disabilities, but also other differences. “It was time to open up the umbrella,” Heiderich recalls.42 The campaign was called “Differences”43 and featured people with tattoos, piercings, or out-of-the-ordinary hairdos and people who are bodybuilders, as well as a blind person with his guide dog, a wheelchair user and a teenage girl with Down syndrome.

Documentary: “From Grief to Struggle” Another media event that brought more attention to Down syndrome in Brazil was a 2005 documentary about persons with Down syndrome. The filmmaker Evaldo Mocarzel, who also has a daughter with Down syndrome, is a friend of Werneck. The documentary, called From Grief to Struggle,44 focused on the impact receiving the diagnosis of Down syndrome has on families, by highlighting the healing process for the family, the best ways to understand their child and the struggle to get their family member with Down syndrome included in society. The documentary, which received awards in a number of film festivals, featured Mocarzel’s daughter, Joana, who was 6 years old at the time. Werneck helped Mocarzel raise money to produce and promote the film. A copy of the documentary ended up in the hands of one of TV Globo’s main telenovela writers, Manoel Carlos, and he decided to explore the theme as a main plot in his telenovela, Pages of Life.45 The Pages of Life production auditioned 15 children with Down syndrome,46 and settled on 6-year-old Joana Mocarzel from the documentary to play the part of a child with Down 212

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syndrome. Joana was the first main character with a disability ever to appear in a telenovela in Brazil. Joana and her family, who lived in Sao Paulo, temporarily moved to Rio, where Pages of Life was shot. The family members said that they were willing to make the sacrifice of moving for Joana’s role because of the important visibility Down syndrome would receive by being depicted on a popular telenovela. TV Globo hired MetaSocial Institute co-founder Helena Werneck as an on-set coach for Joana. Werneck was always on set when Joana had to shoot a scene, which gave her significant access to the producers, directors, actors and writers, so she could emphasize the importance of the telenovela in changing the way the show’s audience thought about persons with disabilities.47

The Pages of Life Storyline about Down Syndrome The storyline of Pages of Life that included the child with Down syndrome focused on the character of Nanda, who at 18 years of age gets pregnant. Her rich boyfriend, Leo, also very young, asks her to have an abortion, but she refuses. He leaves her. Nanda’s mother, the antagonist Marta, becomes furious when she finds out Nanda is not only pregnant, but also expecting twins. When Nanda approaches delivery time, she has a terrible fight with her mother, leaves the house and is run over by a bus. In the hospital, Doctor Helena operates on Nanda and saves both infants, a boy and a girl, but the mother dies in the doctor’s arms. The doctor contacts Marta to tell her that her daughter has died. When Marta goes to the hospital, the doctor tells her that Nanda’s last wish was for the children to be named Francisco and Clara. Doctor Helena also tells Marta that Clara was born with Down syndrome. This scene was written very carefully, in consultation with Dr. Zan Mustacchi, a Brazilian expert on Down syndrome, and Doctor Helena delivers the news in the most careful way possible.48 The grandmother character Marta reacts terribly, and says that the child would be “retarded,” a burden and that she will not take a “defective child” home. Marta decides to take only the boy and give the girl up for adoption, without telling her family.49 Doctor Helena, who also had a daughter called Clara who died at 5 years of age with from meningitis, decides to adopt the infant with Down syndrome. Doctor Helena becomes a devoted and loving mother, and Clara grows up happy and healthy. Viewers see Clara’s progress and use of speech therapy, physiotherapy, etc. The show features Clara, aged 6 years, attending an inclusive preschool, and it is presented as an experience in which Helena has to learn to advocate for her daughter. When Helena discovers Clara is not participating or doing schoolwork because the preschool doesn’t believe she is capable, Helena becomes angry, saying that the teacher is discriminating against Clara and that she will file a complaint in the Public Ministry (responsible for the rights of persons with disabilities in Brazil).50 The NGO Escola de Gente (School of People) was a consultant for the parent– teacher meeting scene.51 Helena pulls Clara out of the preschool and begins to look for a genuinely inclusive placement. She visits many schools, and hears the same things parents with children with disabilities often hear—“we are not prepared,” “she won’t be happy here,” etc. Helena even goes to a segregated special education school, but that school director says that it would be better for Clara if she went to a regular school. Finally, Helena finds a regular preschool that accepts Clara. In the usual coincidental plots of telenovelas, it is the same school that Francisco, her twin brother, attends and the children become friends. That leads to Leo, the twins’ father, finding out that Clara is his daughter; he goes to court to ask for guardianship of Clara. Helena is devastated, but the judge decides that Clara should remain with Helena. The reunited twins become fast friends, and they and their parents become one big united family. 213

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Exploding Myths about Down Syndrome Disability advocates were pleased that many stereotypes and myths about Down syndrome were confronted by Pages of Life. Many in Brazil, as in other countries, believe incorrect information about the disability. 1. Older women have babies with Down syndrome—false. The probability of having a baby with Down syndrome rises after age 35, but more women who are younger than 35 have children with Down syndrome.52 2. It is not possible to have twins, one with Down syndrome and another without Down syndrome—false. Cases of fraternal twins or triplets in which one child has Down syndrome and others do not are common, because these twins do not share DNA like identical twins. The Clara and Francisco characters in Pages of Life are not unusual.53 3. Segregated special education schools are better for students with disabilities—false. Much research shows that children with disabilities learn better in mainstream environments, and inclusive schools are better for all students, disabled or not.54 4. Parents are sad to have a child with Down syndrome—false. The birth of a child with a disability is primarily about adjustment; most parents do find it difficult to hear that their children have Down syndrome at first. However, research shows that parents and siblings love their family members with Down syndrome, just like any other person in their family.55 In Pages of Life, Helena’s life becomes much happier after adopting Clara. Clara’s birth father, Leo, also shows his love for his daughter with Down syndrome, once he knows she exists. Although Brazilian society may have first viewed Clara as a “defective child,” her character becomes one of the most beloved in the telenovela.

The Influence of Pages of Life After its popularity in Brazil, Pages of Life was sold to many countries, including the United States, Canada, Chile, France, Mozambique, Venezuela, Italy, Israel, Cuba and Indonesia,56 which led to more conversations about inclusive education in the countries that aired it. Disability organizations and advocates of inclusive education suddenly had popular culture on their side when discussing the topic. This meant the news media in these countries began paying attention to the subject of disabled children attending mainstream schools, especially those with Down syndrome. After seeing the telenovela storyline, parents of children with disabilities learned about their children’s right to be included in regular schools and they started to demand it. Research in 2007 illustrated that the Down syndrome storyline was one of the important issues discussed in the telenovela. Respondents who watched the episodes about Clara reported school inclusion as one of the most memorable issues addressed by Pages of Life: “the family relationship was the most frequently observed issue, followed by social inclusion, inclusion in school and health issues.”57 Teachers, parents and other people involved in the pro-school inclusion movement all agree that there was a “before” and an “after” Pages of Life.58 Some argue that the show’s writers should have made it clearer that it was a violation of disability rights laws in Brazil to refuse to enroll a child with disability at a regular school, but the writers do have the last say on the storylines.59 However, according to the Ministry of Education school census, inclusion of students with disabilities in public schools in Brazil jumped from 13 percent of students with disabilities in 1998 to 93 percent in 2014,60 and specialists say Pages of Life played an active role in this substantial increase.61 It truly did change Brazil’s attitudes about people with Down syndrome and possibly many others with

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disabilities. Pages of Life also helped raise the morale and self-esteem of people with Down syndrome in Brazil, and they saw themselves reflected in even more aspects of popular culture when the first dolls with the characteristics of Down syndrome arrived in Brazilian stores in 2007.62 Pages of Life initiated a significant “social merchandising” trend in Brazil, and other characters with disabilities played by actors with and without disabilities were included in other telenovelas. In 2009, telenovela writer Manoel Carlos, who had introduced Down syndrome into Pages of Life, wrote for the telenovela Live Life (Viver a Vida), in which a character who is a fashion model becomes quadriplegic. These episodes raised discussions about accessibility in Brazil. At the end of every episode, a disabled Brazilian appeared in a video, discussing his or her life. The plot involving quadriplegia was based on the life story of disability activist and journalist Flavia Cintra, who worked as a consultant for the storyline.63 The disabled character, Luciana, a young woman, is the focus of happiness, not tragedy, in the telenovela. In the storyline, she gets married and has twins, mirroring the real-life Cintra, who also has twins. After Live Life went off the air, TV Globo hired Cintra, who became the first reporter with quadriplegia on Brazilian TV.64

Media Representations and Disability Rights At the same time a storyline about Down syndrome was airing on a Brazilian telenovela, the UN General Assembly was adopting the first human rights treaty of the third millennium, the Convention on the Rights of Persons with Disabilities (CRPD),65 an international human rights treaty to protect the rights and dignity of persons with disabilities that, according to the United Nations had been ratified by 172 countries by March 2017.66 Based on the Americans with Disabilities Act (ADA),67 the CRPD is considered by the Special Rapporteur on Disability, Hissa Al Thani, to be a progressive step,68 with its focus on fostering full participation of persons with disabilities in governments and the civil society.69 The CRPD acknowledges the important contributions of mass media in changing how societies view people with disabilities. Article 8 of the Convention says media can be used to raise awareness about the inclusion of persons with disabilities. The Article states that countries should take measures that include “encouraging all organs of the media to portray persons with disabilities in a manner consistent with the purpose of the present Convention.” Article 8 also recommends “promoting awareness-training programmes regarding persons with disabilities and the rights of persons with disabilities.”70 Research has also shown how crucial media are in educating a society about disability issues. In 2012, Haller noted that Western societies are “mass-mediated cultures, in which their citizens understand reality through personal experience and mass-media information,”71 so the presence of persons with disabilities in shows like Pages of Life, as well as films, news, advertisements and other forms of media, contribute to building awareness of disability rights for media consumers. But people with disabilities themselves must be part of these efforts to create awareness through mass media. Clearly, Pages of Life’s storyline about Clara, a girl with Down syndrome, had much more impact because she was played by a child with Down syndrome. At a UN event in 2016, the author of this chapter explained that persons with disabilities should be brought into media spaces as educators. Using a personal perspective, they can present information to media workers on the rights of persons with disabilities, on violations of their rights, on the pervasiveness of stereotypes and on the need for accessible media platforms. “The inclusion of persons with disabilities as communicators in both public and private media organizations would benefit the realization of their rights.”72 Efforts to include people with disabilities in all forms of media are finally happening worldwide, and many groups are monitoring these initiatives. For example, inclusive advertising, the incidental and inclusive representation of persons with disabilities in mass-reach advertising, has significant 215

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potential to accelerate change in social attitudes towards disability and accordingly the realization of human rights. Some organizations, such as Starting with Julius in Australia and Changing the Face of Beauty in the United States, are having success by actively approaching companies to suggest that they should include persons with disabilities in their advertising. A number of Australian companies contacted by Starting with Julius are now using both children and adults with disabilities in their advertising. Some major retailers, such as Target and Kmart, have increased representation of persons with disability in their core marketing campaigns and messages.73 In terms of monitoring television and film productions that have characters with disabilities, several non-profits in the United States have added that to their mission. For example, after a request from US disability advocates, the GLAAD organization that was annually reporting on LGBTQ characters on television, added disabled characters to its “Where Are We On TV” report in 2014.74 A more in-depth review in 2016, the “Ruderman White Paper on the Employment of Actors with Disabilities in Television,” with exclusive focus on disability, found that more than 95 percent of characters with disabilities are played by non-disabled actors on television. The report also raised the problem of ongoing employment discrimination against persons with disabilities in the US television industry.75 The University of Southern California’s Annenberg Inclusion Initiative added the disability category to its ongoing research into diversity in films, finding that characters with disabilities made up “only 2.4 percent of all speaking or named characters that were shown with a disability. Of the movies reviewed, 45 failed to depict even one speaking character with a disability.”76 Some projects are actively working to train people with disabilities to work in news, entertainment and advertising media. In Australia, the Attitude Foundation focuses on employment and training persons with disabilities to work in the media.77 In the United States, Los Angelesbased Down Syndrome in Arts and Media works as a casting liaison service for individuals with Down syndrome and other developmental disabilities like William’s syndrome, cerebral palsy and those on the autism spectrum.78 Over 31 years, from 1986 to 2017, the New York City-based Alliance for Inclusion in the Arts actively advocated for full diversity as a key to the vitality and dynamism of American theatre, film and television.79 It promoted authentic dialogue about race, culture and disability that embraced the complexity of underlying social and historical issues. In 2016, Lights! Camera! Access! 2.0 held mentoring and networking events for young people with disabilities interested in media careers in Washington, DC and New York City.80 All these efforts, including Pages of Life, illustrate that the more people with disabilities are represented in mass media, the more likely it is that other people with disabilities will be hired for media work in the future. As important is the fact that societal attitudes about disability are changed when more people with disabilities are seen in the media, and the awareness that builds can actually lead to a more inclusive society. The Pages of Life storyline resulted in its Brazilian viewers learning more about Down syndrome than they knew before.81 That means many Brazilians suddenly had the information they needed to make positive changes in society for people with Down syndrome and other disabilities.

Notes 1 PBS News Hour, “The Power of the Telenovela,” January 25, 2012, www.pbs.org/newshour/arts/thepower-of-the-telenovela. 2 Páginas da Vida, directed by Jayme Monjardim (Brazil: Globo, 2006). 3 The first actor with Down syndrome to star in a drama series is said to be Chris Burke, an actor with Down syndrome who starred in Life Goes On, a US prime-time televised family drama in 1989. Kristin McMurran, “For Chris Burke, the First Actor with Down Syndrome to Star on TV, Life Goes On in a Big Way,” People, October 16, 1989, http://people.com/archive/for-chris-burke-the-first-actor-withdown-syndrome-to-star-on-tv-life-goes-on-in-a-big-way-vol-32-no-16.

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4 In addition to Pages of Life, other instances of characters with Down syndrome in telenovelas in Brazil include: Marquinho in O Mapa da Mina (1993), Oswaldo and João in Coração de Estudante (2002) and Miguel in Vidas em Jogo (2012). Marina Dias De Faria and Leticia Moreira Casotti. “Characters with Disabilities in Brazilian Telenovelas: Almost Invisible Consumers,” Global Journal of Management and Business Research: E Marketing 14, no. 4 (2014): 11–12. 5 Tbell1826, “The 50 Most Popular Brazilian Telenovelas,” IMDb.com, September 22, 2011, www.imdb. com/list/ls003158716. 6 Patrick Bruha, “Most Popular Brazilian Telenovelas,” Brazil Business, March 2015, http://thebrazilbusiness. com/article/most-popular-brazilian-telenovelas. 7 “Último capítulo de ‘Páginas da Vida’ registra 53 pontos de audiência,” Folha de São Paulo, March 3, 2007, www1.folha.uol.com.br/folha/ilustrada/ult90u69016.shtml. 8 Population Media Center, Report to the Weeden Foundation on the Social Merchandising Project in Brazil to Incorporate Reproductive Health Issues into Prime-Time Programs of TV Globo April 2006–March 2007 (South Burlington, VT: Population Media Center, 2007), 7, www.populationmedia.org/wp-content/uploads/ 2007/10/brazilreportweeden.pdf. 9 Population Media Center, Report to the Weeden Foundation, 11. 10 Mauro Neves, “50 anos de televisão brasileira: cinco telenovelas que marcaram época,” Bulletin of the Faculty of Foreign Studies, Sophia University, no. 35 (2000), http://dept.sophia.ac.jp/fs/pdf/kiyo35/06.pdf. 11 Patrick Bruha, “Most Popular Brazilian Telenovelas,” Brazil Business, March 2015, http://thebrazilbusiness. com/article/most-popular-brazilian-telenovelas. 12 Renan Santos, “Estudo aponta que novela ainda é a atração preferida dos latinos na TV” [Study reveals that, to Latinos, telenovelas are still the favorite attraction on TV], TV Foco, October 14, 2015, http://otvfoco. com.br/estudo-aponta-que-novela-ainda-e-a-atracao-preferida-dos-latinos-na-tv. 13 Cavalo de Aço, directed by Walter Avancini, David Grimberg and Daniel Filho (Brazil: Globo, 1973). 14 J. B. Pinho, Comunicação em Marketing: princípios da comunicação mercadológica [Communication in marketing: product placing principles] (Campinas, SP: Papirus, 2008). 15 A Próxima Vítima, directed by Jorge Fernando (Brazil: Globo, 1995). 16 Maria Aparecida Baccega, “Novela é Cultura,” VEJA, Janeiro 24, 1996 http://bancopublicacoes.espm.br/ arquivos/novela_e_cultura.pdf, quoted in Patricia R. Piveta, Telenovela: um dos procedimentos Educativos da sociedade brasileira [Telenovela: one of the education procedures of Brazilian society] (Londrina: UEL, 1999). 17 Paulo C. Fulgencio, Glossário: Vade Mecum [Glossary: go with me], (Rio de Janeiro: Mauad, 2003). 18 Marcos J. S. Mazzotta, Educação especial no Brasil: história e políticas públicas [Special education in Brazil: history and public policy], (São Paulo: Cortez, 2011). 19 Olga M. P. R. Rodrigues, Marcos históricos, conceituais, legais e éticos da Educação Inclusiva [Historic, conceptual, legal and ethical milestones of inclusive education] (Bauru: MEC, 2010). 20 Vera L. M. F. Capellini and Olga M. P. R. Rodrigues, “Fundamentos históricos e legais da educação da pessoa com deficiência, transtorno global do desenvolvimento e altas habilidades/superdotação no Brasil” [Historical and legal foundations of the education of people with disabilities, developmental disorder and high skills/giftedness in Brazil] (Bauru: UNESP, 2014), https://acervodigital.unesp.br/bitstream/unesp/ 155261/1/unesp-nead_reei1_ee_d02_texto02.pdf. 21 Brazil Constitution, “Constituição da República Federativa do Brasil” [Constitution of the Federative Republic of Brazil] (Brasília, DF: Senado Federal/Secretaria Especial de Editoracão e Publicações, 1988). 22 “A radicalização do debate sobre inclusão escolar no Brasil” [The radicalization of the debate about inclusive education in Brazil] Revista Brasileira de Educação, [Education Brazilian magazine] 11, no. 33 (Sept./ Dec. 2006), www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-24782006000300002. 23 UNESCO, The Salamanca Statement and Framework for Action on Special Needs Education (Paris: UNESCO, 1994), www.unesco.org/education/pdf/SALAMA_E.PDF. 24 MEC/Inep/Deed, “School Census Data, 2014,” http://portal.mec.gov.br/index.php?option=com_doc man&view=download&alias=17044-dados-censo-2015-11-02-materia&Itemid=30192. 25 Amelia Meyer, “Brazil Education,” accessed March 01 2017, www.brazil.org.za/brazil-education.html. 26 “Dados do Censo Escolar indicam aumento de matrícula de alunos com deficiência” [School census data indicates a rise in students with disabilities enrollment], Portal Brasil, March 23, 2015, www.brasil.gov.br/ educacao/2015/03/dados-do-censo-escolar-indicam-aumento-de-matriculas-de-alunos-com-deficiencia. 27 Lucila Conceição Pereira, “Educação Inclusiva” [Inclusive education], InfoEscola, accessed March 1, 2017, www.infoescola.com/pedagogia/educacao-inclusiva. 28 Martinha Clarete Dutra dos Santos, “Marcos legais da educação infantil inclusiva” [Legal legislation of inclusive pre-schooling], Diversa, July 15, 2016, http://diversa.org.br/artigos/marcos-legais-da-educacaoinfantil-inclusiva.

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Patricia Almeida 29 “Challenging Connections: Zika and Disability in Brazil,” Global Disability Watch, April 19, 2016, http:// globaldisability.org/2016/04/19/challenging-practices-zika-disability-brazil. 30 OECD, A Teachers’ Guide to TALIS 2013: Teaching and Learning International Survey (Paris: OECD, 2014), 14, http://dx.doi.org/10.1787/9789264216075-en. 31 Oscar Hidalgos, “Education Pioneer George Bemis dies,” San Bernardino County Sun Obituary, October 7, 1994, www.newspapers.com/newspage/93153912. 32 “Um Pouco da História do Movimento das Apaes” [A brief story of the Apae Movement], APAE Brasil, accessed June 6, 2016, www.apaebrasil.org.br/arquivo/12468. 33 Alexandre Saconi, Filipe Albuquerque and Gustavo Heidrich, “Com mais de 240 mil deficientes atendidos, Apae teme extinção” [With more than 240,000 disabled clients, Apae fears extinction], R7 News, September 25, 2013, http://noticias.r7.com/educacao/noticias/com-mais-de-240-mil-deficientes-atendidos-apaeteme-extincao-20130925.html. 34 The section on MetaSocial is based on conversations between Patricia Almeida and Helena Werneck and Patricia Heiderich, October 4, 2005, March 21, 2010 and September 7, 2015. 35 Nizan Guanaes, Agency DM9, Organ Donation Campaign, “Existe vida após a morte” [There is life after death], 1995, YouTube video, 00:30, www.youtube.com/watch?v=CS_aoI_LTYE. 36 Nizan Guanaes, Agency DM9, “Pianist,” 1996, YouTube video, 00:27, www.youtube.com/watch? v=24SrDKFAvkc. 37 Nizan Guanaes, Agency DM9, “Carousel,” 1998, YouTube video, 01:36, www.youtube.com/watch? v=RxQFlmNZ_Vs. 38 Guanaes, “Carousel.” 39 Adilson Xavier, Agency Giovanni, “Waitress,” 2002, YouTube video, 00.46, www.youtube.com/watch? v=TqSOilEIxEc. 40 Adilson Xavier, Agency Giovanni, “Teenager,” 2003, YouTube video, 00.28, www.youtube.com/watch? v=Hfurp3SvuPY. 41 Helena Werneck, Interview with author, October 4, 2005. 42 Patricia Heiderich, Interview with author, March 21, 2010. 43 Adilson Xavier, Agency Giovanni, “Differences,” 2005, YouTube video, 00:45, www.youtube.com/ watch?v=NI68SVzfLhI. 44 Leonardo Mecchi, “Do Luto à Luta, de Evaldo Mocarzel” [“From Grief to Struggle,” directed by Evaldo Mocarzel], Revista Cinetica, accessed March 1, 2017, www.revistacinetica.com.br/lutoaluta.htm. 45 Helena Werneck, Interview with author, October 4, 2005. 46 Andrezza Capanema, Fabiola Reipert, “Portadora de síndrome de Down será estrela de ‘Páginas da Vida’” [Girl with Down syndrome will be “Pages of Life’s” protagonist], Folha de São Paulo, June 15, 2006, www1.folha.uol.com.br/folha/ilustrada/ult90u61420.shtml. 47 Claudia Dias, “Páginas da Vida terá uma atriz mirim como protagonista” [A child actress will be “Pages of Life” protagonist], O Fuxico, June 9, 2006, www.ofuxico.com.br/noticias-sobre-famosos/paginas-da-vidatera-uma-atriz-mirim-como-protagonista/2006/06/09-31104.html. 48 “Médico Brasileiro recebe prêmio da Down Syndrome International” [Brazilian doctor receives award from Down Syndrome International], Inclusive, 16 March 2013, www.inclusive.org.br/arquivos/24317. 49 “Páginas da Vida: Marta rejeita a neta com síndrome de Down” [“Pages of Life”: Marta rejects granddaughter with Down syndrome”], January 13, 2005, YouTube video, 08:07, www.youtube.com/watch? v=8v6yXik4DYI. 50 “Clara é discriminada por professora em reunião de pais” [Teacher discriminates Clara in parents’ meeting], December 30, 2009, YouTube video, 09:45, www.youtube.com/watch?v=OmB7I-rp5E4. 51 Atriz com síndrome de Down encanta em Páginas da vida [Actress with Down syndrome enthralls public on “Pages of Life”], Noticias Terra, September 1, 2006, 2017, http://noticias.terra.com.br/interna/0,, OI1117354-EI6813,00.html. 52 National Down Syndrome Society, “Myths & Truths,” 2012, www.ndss.org/Down-Syndrome/MythsTruths. 53 Sue Buckley, “How Often Are Children with DOWN Syndrome Twins?” Down Syndrome News and Update 3, no.1 (2003): 10. 54 Robert Jackson, “Inclusion or Segregation for Children with an Intellectual Impairment: What does the Research Say?” (Salisbury, Q: Queensland Parents for People with a Disability Inc., 2008), www.include. com.au/wp-content/uploads/2011/11/Inclusion_Seg.pdf. 55 Brian G. Skotko and Susan P. Levine, “Family Perspectives of Down Syndrome,” American Journal of Medical Genetics Part A 170, no. 4 (2016): 930–941. 56 Cilia Monteiro, Social Projects Division, TV Globo, email to author, February 14, 2012.

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57 Population Media Center, Report to the Weeden Foundation, 9. 58 “Dia Internacional da Síndrome de Down terá eventos em todo Brasil” [Events all over Brazil on World Down Syndrome Day], Rede Globo, March 16, 2013, http://redeglobo.globo.com/acao/noticia/2013/03/ dia-internacional-da-sindrome-de-down-tera-eventos-em-todo-brasil.html. 59 “Sobre a Meta 4 do Plano Nacional de Educação e um histórico da inclusão” [About Goal 4 in education national plan and history of school inclusion], Inclusive, November 11, 2013, www.inclusive.org.br/arquivos/ 25438. 60 “Dados do Censo Escolar.” 61 “Sobre a Meta 4 do Plano Nacional de Educação.” 62 “Primeira boneca fabricada com as características da síndrome de Down” [First manufactured doll with Down syndrome’s characteristics], Rank Brasil, June 13, 2012, www.rankbrasil.com.br/Recordes/Materias/ 06NZ/Primeira_Boneca_Fabricada_Com_Caracteristicas_Da_Sindrome_De_Down. 63 Carla Felicia, “Viver a vida’: Intérprete da nova amiga de Luciana é cadeirante” [“Live life” Luciana’s new friend is a real wheelchair user], Extra, March 1, 2010, http://extra.globo.com/tv-e-lazer/viver-vida-interpreteda-nova-amiga-de-luciana-cadeirante-378713.html. 64 Patricia Almeida, “A vida continua: Flávia Cintra é a nova repórter do Fantástico” [Life goes on: Flavia Cintra is the new Fantastico reporter], Inclusive, May 17, 2010, www.inclusive.org.br/arquivos/15368. 65 UN General Assembly, “Convention on the Rights of Persons with Disabilities: resolution/adopted by the General Assembly,” January 24, 2007, A/RES/61/106, www.un.org/disabilities/convention/convention full.shtml. 66 United Nations, “Convention on the Rights of Persons with Disabilities,” Treaty Series 2515 (December, 2006): 3, www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. 67 Americans with Disabilities Act of 1990, Public Law 101–336, 108th Congress, 2nd session, July 26, 1990, www.ada.gov/pubs/adastatute08.htm. 68 H. A. Thani, “Convention on the Rights of Persons with Disabilities: A Progressive Human Rights Instrument” (speech, presented at United Nations Human Rights Council, Geneva, September, 2006), www.un. org/esa/socdev/enable/srstathrc2006.html. 69 Oliver Lewis, “Why Should the United States Ratify the UN Convention on the Rights of Persons with Disabilities?” Oliver Talks, accessed June 20, 2016, www.mdac.info/en/olivertalks/2013/09/03/whyshould-united-states-ratify-un-convention-rights-persons-disabilities. 70 United Nations Convention on the Rights of Disabled Persons, Article 8, Awareness-raising, 2006, www. un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-8-aware ness-raising.html. 71 Beth Haller, Mihaela Dinca-Panaitescu, Marcia Rioux, Andrew Laing, Jessica Vostermans and Paula Hearn, “The Place of News Media Analysis within Canadian Disability Studies,” Canadian Journal of Disability Studies 1, no. 2 (2012): 47. 72 International Disability Alliance, “Media and Persons with Disabilities,” Side Event at the Social Forum, 2016, www.internationaldisabilityalliance.org/events/media-and-persons-disabilities. 73 Starting with Julius, “Ad Inclusion in Australia” (2017), www.startingwithjulius.org.au/ad-inclusion-inaustralia. 74 GLAAD, Where We Are on TV report 2014, (2014), www.glaad.org/whereweareontv14. 75 Danny Woodburn and Kristina Kopić, The Ruderman White Paper on Employment of Actors with Disabilities in Television (Ruderman Family Foundation, 2016), www.rudermanfoundation.org/wp-content/uploads/ 2016/07/TV-White-Paper_final.final_.pdf. 76 Stacy L. Smith, Marc Choueiti and Katherine Pieper, Inequality in 800 Popular Films: Examining Portrayals of Gender, Race/Ethnicity, LGBT, and Disability from 2007–2015, Media, Diversity and Social Change Initiative (Los Angeles, CA: USC Annenberg, 2016), http://annenberg.usc.edu/pages/~/media/MDSCI/Dr%20Stacy %20L%20Smith%20Inequality%20in%20800%20Films%20FINAL.ashx. 77 “Attitude Foundation to Up the Ante on Disability in Australia,” Attitude Foundation, December 1, 2015, www.attitude.org.au/attitude_foundation_to_up_the_ante_on_disability_in_australia. 78 Down Syndrome in Arts and Media, accessed August 24, 2019, www.facebook.com/pg/ActorswithDown Syndrome/about/?ref=page_internal. 79 Alliance for Inclusion in the Arts, archived website, accessed August 24, 2019,http://inclusioninthearts.org. 80 Beth Haller. “Lights! Camera! Access! 2.0 Works to Move Young Disabled People Toward Media Careers,” Media dis&dat blog, December 19, 2016, http://media-dis-n-dat.blogspot.com.br/2016/12/lights-cameraaccess-20-works-to-move.html. 81 Population Media Center, Report to the Weeden Foundation.

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20 HOW DO YOU WRITE THAT IN SIGN LANGUAGE? A Graphic Signed Novel as a Source of Epistemological Reflection on Writing Véro Leduc Alfred Metallic, who wrote and defended the first Indigenous-language thesis in Canada, reflected on the fundamental importance of his First Nations’ language, Mi’gmaw, in producing knowledge: “Our language, it’s how we maintain our relations and how we understand where we come from. It gives you access to your place in the world.”1 Reading his words, I realize once again the importance of language in building minoritized epistemologies.2 Maybe one day, I will submit a chapter in sign language and you would read me with a book-reader technology, watching a video of someone signing Quebec Sign Language or international signs, reading or listening to captions. For now, I’ll write with these words, the ones I write and you read, the ones that represent the oral languages of hearing people. This chapter presents reflections on videography as a way of writing sign languages through an exploration of ideas that emerged during the production of It Fell on Deaf Ears (C’est tombé dans l’oreille d’une Sourde),3 the first graphic signed novel in Quebec Sign Language (LSQ).4 Furthermore, the situation of videography at the core of this creation raises the importance of digital media for the creation of signed knowledge and cultural production. As a comic book lover, I decided to explore the comic medium through a research-creation project that was part of my doctoral studies. When I decided to produce a graphic novel5 in LSQ, however, I was unaware of the enormity of the task that lay before me. I discovered a number of comics about Deaf people and deafness but almost nothing in sign language, which led me to wonder about the presence, or rather the relative absence, of signed literature. Were there no signed books, no novels in sign language, no signed stories like the French ones I had devoured since childhood? This led to questions about writing itself, an act I had always taken for granted. Being able to read and write in a first language had always seemed self-evident. We write to think, contemplate and communicate. We read to discover, imagine new possibilities and connect with the world. Inasmuch as traditional writing requires paper, pen or computer as media, in the sense of medium and support, videography especially involves digital media. As I began to consider power relations from a new perspective, writing, it also opens reflection to power relations across media and technologies. Looking around me, I realized that although most hearing people have the opportunity to read and write in their first language, Deaf signers whose first language is signed do not share this privilege. Because culture is transmitted through language and vice versa, it seemed to me that the lack of signed literature, despite a very small number of signed articles and cultural production, contributed to placing Deaf people in 220

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a minoritized and subaltern position. From that moment on, creating a graphic novel in LSQ became an inspiring avenue toward greater agency.

A Graphic Novel in LSQ Produced with material from encounters with Deaf people and members of my hearing family, the graphic novel It Fell on Deaf Ears (C’est tombé dans l’oreille d’une Sourde) was part of my doctoral research-creation project.6 Protagonists of this documentary production each share anecdotes and reflections on different themes such as Deafhood, belonging, historicity, oppression, agency and intersectionality. With the affects and effects of living as Deaf as the main theme of my graphic signed novel, I sought to question what Deaf epistemological perspectives might look like, both technologically and politically. Using videography as a medium and as a form of writing capable of rendering sign languages and their linguistic components in three dimensions, the graphic novel takes the form of video chapters posted online.7 I chose video because the three-dimensionality of sign languages fits perfectly with the three-dimensionality of videographic writing. The three dimensions of sign languages disrupt traditional ideas of writing by forcing it to reveal its inability to capture certain movements. The linguistic modalities of sign languages involve several dimensions, including the configuration of fingers and hands, gestural movement, location of signs and non-manual expressions such as movement of the eyes, mouth, eyebrows, head and torso.8 Lines drawn on paper are insufficient to write sign languages in ways that render its complexity. It is certainly possible to represent the alphabet or fixed images that evoke a sign, but sign language is primarily a language in movement. Just as a second of film contains 24 images, the expression of a signed gesture often includes several positions. Although I had read all these comics—“the ninth art”9—I had never realized the extent to which they expressed hearing forms and cultures. In other words, many of the formal codes and structures used in comic books are based on the writing of oral languages of hearing people and are therefore incompatible with the three-dimensional, embodied linguistic modalities of sign languages. By deconstructing the codes of hearing comics—traditionally produced in paper format—I was able to perceive the limits of their forms and move towards other possibilities by producing a filmed graphic novel. For example, even when a character’s body is drawn very small within a larger scene, a panel in a hearing comic can easily represent the character’s talk because speech bubbles and font size can be adjusted to make the words legible. Two characters can have a conversation even if their bodies are not visible in the image because the reader still has access through speech bubbles alone. Sign languages, however, are embodied in the sense that they require bodies as sites of communication: if the body cannot be seen, neither can the message. Beyond the literary and aesthetic stylistic possibilities offered by comic books, sign-language writing raises a number of issues. For Derrida, “writing is the condition of the episteme.”10 If writing—an act through which language is inscribed on a medium—is capable of communicating, reflecting upon, debating, citing, remembering and translating knowledge, what kind of writing is needed for signed knowledge to exist? How is this possible when writing has more often than not been understood as a representation of oral languages, a proxy?11

The Many Ways of Writing Sign Languages With the fifteenth-century Cervera Manuscript being the oldest known movement-notation system, there are approximately 100 in all, including Labanotation. Unlike writing systems most commonly used in dance, sign-language writing systems include a linguistic component. Research on the topic most likely began with the work of Auguste Bébian12 in the early nineteenth 221

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century. In 1960, hearing linguist William Stokoe created a system of notation for American Sign Language (ASL) as part of a flurry of research through which he sought to create recognition for sign languages as complete languages in their own right. In 1966, hearing dancer Valerie Sutton created DanceWriting, a visual writing system for dance. In 1974, Sutton invented a system for writing sign language known as Sutton Sign Writing. In 2003, Deaf writer Robert Arnold Augustus designed a way to write American Sign Language called si5s.13 This last system was developed by two Deaf women artists Andrean Clark and Julia Dameron, as ASLWrite, a open-source writing system. Each of these writing systems, in their own way, make it possible to write certain sign languages. Although studies have been conducted on the relevance of an LSQ writing system,14 no such system is either consistently or widely used in Quebec. Committed to making my creation accessible to the largest possible number of Deaf LSQ signers, I turned to video, an almost natural medium for writing sign languages.15 In the early twentieth century, the advent of film finally made it possible to capture sign languages as they are: gestural and linguistic movement that photographs are incapable of rendering in their entirety.16 If the power of cinema is to “bring images to life”17 then, for Deaf people, its power also lies in the ability to represent and record their languages in movement.18 Between 1910 and 1920, thanks to an initiative by George Veditz, the National Association of the Deaf (NAD) produced 13 silent films on 35 mm stock in order to preserve and transmit American Sign Language, which had been increasingly threatened since the Milan Congress, an event I will discuss more in detail in the next section.

The Milan Congress and the Oppression of Sign Languages It is not only because sign languages are three-dimensional that classical writing may not be the best media for them. The history of writing sign languages, and subsequent media technologies appropriate for sign language, has also been significantly marked by oppression, as demonstrated in particular by an event, the International Congress on Education of the Deaf, often simply referred to as “the Milan Congress” of 1880. During the Congress, it was decided that sign languages should no longer be taught in schools because it was believed that what separated humans from animals was the ability to speak.19 For example, Dr. Johann Conrad Amman said of deaf people: “How dull are they in general! How little do they differ from animals.”20 According to Lewis J. Dudley, founder of the Clark Institute for the Deaf, an American boarding school for deaf students, deaf people were “human in shape, but only half human in attributes.”21 It follows, then, that the gathering’s first resolution stipulates that: The Congress, [c]onsidering the incontestable superiority of speech over signs in restoring the deaf-mute to society, and in giving him a more perfect knowledge of language, [d]eclares [t]hat the oral method should be preferred to that of signs for the education and instruction of the deaf and dumb.22 One of the first bilingual articles in French and LSQ published in Quebec summarized the scope of this event: Resolutions adopted after the congress recommended that sign languages be banned. The impact of the ban was felt throughout the West. Deaf and signing teachers were dismissed and corrective measures taken to prevent students from signing: tying students’ hands behind their backs and preventing older students from socializing with younger 222

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ones in order to stop them from transmitting the language are but two examples. It [the date of the Milan Congress] is a traumatic date.23 The Milan Congress sparked the rapid spread of oralism. Because this method focused on a variety of speech therapies to teach deaf people to speak, this is how students spent most of their time, much to the detriment of instruction in other disciplines.24 Still today, oralism is more highly valued than sign-language instruction in many countries. Comparing the events of 1880 to those of 1492 for First Nations Peoples,25 Deaf researcher Paddy Ladd asks, “What could a Deaf person, and a Deaf community become? What could we have been”26 if the Milan Congress (and its subsequent consequences) had never taken place? It was Ladd who, in 2003, invented the concept of Deafhood, which is particularly useful to deconstruct medical discourses concerning Deaf people. This concept, an efficient tool for deconstructing oppression, focuses on the many ways of living as Deaf persons and thinking about power relations between Deaf and hearing people while also problematizing the hearing privileges. By banning sign-language instruction, the Milan Congress significantly compromised the conditions of possibility of signed knowledge and, simultaneously, Deaf becoming. As the quotation that opens this chapter suggests, we use language to think about our future, where we belong and our relationships to the world. As sign languages require media technologies that are able to render their complexity, we may ask ourselves how they would have developed without the advent of oralism. The Internet has facilitated accessibility of media technology for sign-language communication and knowledge production. However, despite the breadth of knowledge on technology, the development of accessible technologies regarding sign languages is particularly slow, despite the variety of conventions to promote disability rights that have emerged in the wake of advocacy movements, particularly in Western countries.27 For example, there are abundant writing and translation technologies, but those for signrlanguage writing and translation are still at the prototype stage, despite being promising. When I think how Google’s translation module has greatly improved since its invention and, despite possible inaccuracies, how it offers a very useful baseline for translations between several oral languages, I strive for the advancement of such technologies for translation between different sign languages and between oral and sign languages.

Three-Dimensional Writing for a Three-Dimensional Language As I pursued my interest in sign-language writing forms, I sought media technologies capable of rendering their three-dimensionality. My discovery of the existence of avatar-based28 mechanical transcription systems was followed by the understanding that programming them is very complex, requiring that each sign made by a human be recorded with sensory capture devices. The work of Braam Jordaan, a Deaf South African artist who created a character called Sipho the Lion29 who signs, is particularly impressive in this regard. Although avatars are expressive in their way, their signs do not render the full range of human expressivity.30 Working directly with excerpts of encounters filmed with a video camera allowed me to use three-dimensional writing for a three-dimensional language without resorting to avatars. By trusting in the importance of autonomy within the creative and writing processes and by drawing on my experience as a video artist,31 video was an appropriate choice for writing LSQ, particularly because video software includes special effects that can contribute to making my work resonate with the codes used in comic books.32 Because I was accustomed to typographic writing, the transition to videographic writing became an exploration of previously unanticipated political and epistemological implications. 223

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Transforming the Writing Process The political and epistemological decision to create in both LSQ and French raised unexpected difficulties during the writing process, especially regarding media technologies. First, my relationship to the act of writing itself was transformed. The pens, pencils and notebooks I carried about to scribble fragments of ideas, reflections and sketches were traded in for an iPhone to record signed notes … until the device warned me of the battery’s imminent death or that I was low on memory. One day I ran out of memory while I was out hiking—mountaintops are one of my favourite places to write and draw—and, because I could not transfer the files to my computer, I had to watch my previous recordings to decide which ones to delete in order to make space for new ones. And then I saw myself. This body, my body. Although I sometimes used to flip through my notebook to review my notes before moving on, I now realized that typographic writing, no matter how personal, allows for a degree of distance between the words and the embodied subject. A text written in French can evoke ideas of absence and presence, and I was looking for these possibilities related to sign languages’ embodied modality. Second, the visibility of the writing subject raised a whole series of reflections concerning the codes of virtual presence and the perception of self. Although writing with a pen in a café is a common and generally private affair (people can see I’m writing, but not what I’m writing), using a technological tool to record a signed video often attracts attention. Furthermore, using video as a way to write sign language requires showing your face; writing in French does not. Although this may appear to be a small distinction, it generates a new set of relationships to the act of writing. For example, I can write the final version of a French journal article in my pyjamas, even if the article is for a prestigious publication. However, because producing the final version of a videographic text implies a particular relationship to the codes of image presentation, I attribute greater importance to my physical appearance than I normally would. The visibility of the writing subject required by the embodied modality of sign languages unsettled me in many ways. Third, videographic editing differs considerably from typographic editing. In the latter, corrections are easily made by deleting letters or words in an existing document; in the former, correcting an error often requires filming the entire scene over again. Without affecting the appearance of the final version, a typographic text can be freely modified by moving sections as often as desired. Changing the structure of a video, however, produces visible ruptures in the final cut, which creates a feeling of discontinuity not present in a similarly altered typographic text. Furthermore, the form of a typographic text does not reveal its temporality, while videographic text bears the marks of space, time and editing choices: whether or not the video was produced all at once or in several stages is revealed through haircuts, facial appearance, background, clothing and lighting, among other things. A single typographic text can be modified indefinitely, from draft to final version, without losing the appearance of homogeneity understood as professionalism. In contrast, because every modification to a videographic text requires filming, putting it all together can create an impression of a jumble of disorganized parts. Fourth, the type of files used in each of these writing forms influences production decisions and relationality to media technologies. Text processing software, like Word, creates files that can contain as many pages as desired and can easily be sent by email or saved on a USB key, making it possible to work easily in different locations. Video-processing files are considerably more difficult to move from one place to another due to their much larger size. Equipment like external hard drives is much more costly than USB keys. Internet video transfer rates are also significantly slower, which means either more uploading or increasing file mobility through more expensive strategies (server, storage services such as Dropbox or other tools that charge for bandwidth).

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These transformations and technical constraints related to the writing process stimulated reflection on many levels. Among other things, becoming aware of the embodied aspect of sign languages revealed by video mediality raised the question of situated perspectives.

Transforming Situated Perspectives Experiencing the embodied modality of sign languages provoked an epistemological rupture in my relationship to the materiality of writing, the body and subjective situations rendered by videography. Especially relevant to this discussion are ethical concerns raised by approaches in which knowledge is understood as situated, subjugated and silenced, such as those developed by Michel Foucault, Donna Haraway, Nikita Dhawan and others. Using video as a form of writing facilitated an exploration of relevant political and epistemological implications. I recall that, at a time when I was working specifically on anti-oppression approaches, I was concerned with the ethical and political significance of naming my whiteness in a text I was writing in French. I considered the importance of disclosure and of the different ways I could address this component in accordance with my situated viewpoint and asked myself simple-looking questions: Do I say it? What do I say? How do I say it? Signed writing occasioned an interesting discontinuity. Whether or not I wanted to address my racial identity, the embodied nature of sign language reveals both my body and its whiteness despite myself. Because I believe that the situated knowledge approach allows us not only to name the groups to which we belong but also to critically reflect on what it means to belong to them, this realization confirmed my desire to ask the people who were participating in the creation of my graphic novel not only about Deafhood or hearing experience, but also about belonging to other intersecting groups.33 Furthermore, recognizing the in/visibility of certain group memberships required critical reflection on these belongings. With Deaf people in particular, this opened up a space that allowed the graphic novel to address a variety of belongings, including race, disability and gender identity and sexual orientation,34 as well as their intersections with Deafhood.

The Graphic Novel, Agency and Digital Media Producing a graphic novel in the context of a research-creation project presented a unique opportunity to understand the affective and political importance of signed writing in particular and of signed digital media in general. Along with the majority of Deaf people involved in the project and those with whom I have discussed it, I am thrilled to have contributed to one of the first graphic novels produced entirely in sign language, and hence the first in LSQ. Although I sometimes experienced feelings of oppression when faced with inaccessible, poorly adapted, or non-existent writing, editing and translation technologies, the innovative use of digital media in my research-creation project also produced an undeniable experience of agency. Without a doubt, one of the strengths of the graphic signed novel It Fell on Deaf Ears (C’est tombé dans l’oreille d’une Sourde) is its ability to name oppression, identify systemic barriers, deconstruct prejudice and open avenues for further reflection in ways that reach Deaf, hard-of-hearing and hearing people. In the graphic novel, the vast and irreducible universes of Deafhood and Hearingness are addressed from different philosophical angles and through a variety of media, technologies and languages, each of which offers a different point of entry into the work. To give one example, using speech bubbles allows signers to “speak” for themselves. Of course subtitles can translate any type of content, but beyond that, the use of the phylactery has opened a reflection on the notion of voice. Insofar as voice is not considered sounds produced by the body but understood as media that facilitate “the expression of opinion, or, more broadly, the expression of a distinctive perspective on the world that needs to be acknowledged,”35 using speech bubbles 225

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clearly represents the act of “speaking up,” another expression suggesting the extent to which the language of social recognition is marked by phonocentrism. In the bilingual context of the graphic novel, Deaf people “speak up,” or more accurately, send a clear sign for us to listen. Indeed, the sense of agency created through the translation of signed communications and experienced by signers and family members interviewed for the project36 proved to be another rich avenue for reflection: although many people are critical of hearing, able-bodied people playing Deaf or disabled roles in traditional TV and film productions, my graphic novel presents an interesting reversal. As recounted somewhere else,37 I remember the actor Pierre-Olivier Beaulac’s amazement upon realizing that he was playing the role of a hearing person (in this case, my hearing brother, who does not sign). We had to shoot a scene where Pierre-Olivier has to re-do the scene of answering the phone several times because, as a Deaf person, he does not use the phone the same way as Philippe, my brother. Pierre-Olivier had a tendency to start talking before bringing the phone to his ear and to continue speaking as he put it back in his pocket. Even in the take we used, the phone is no longer near his head when he says, “I’ll call you back.” The strangeness of his interpretation of a hearing person, as a Deaf actor, seems to highlight why hearing actors and actresses playing Deaf roles is problematic. These experiences of agency were made possible by a transmedia approach to using digital media that provides a fertile ground for thinking about sign languages and mediality.

Episteme and LSQ: What Does the Future Hold? I realized at the beginning of my project that acts that I had taken for granted in French—speaking, communicating, reflecting, writing—were not available to me in LSQ in the same ways. At the time, I didn’t know how to produce a work of signed literature as creatively as I could in French. I was motivated to pursue this research-creation project by a kind of political, ethical and artistic imperative. I was carried by the creative desire to bring together writing and LSQ without preemptively establishing technical and technological limitations and by working with media technologies in curious, creative ways. The graphic novel was a pretext: if it exists in French, why shouldn’t it exist in LSQ? Deleuze and Guattari present writing as a site of becoming38 and Derrida understands it as a condition of the episteme.39 For me, writing in sign language is a necessary condition for Deaf becoming and knowledge. In this way, digital media contribute to the very conditions of possibility of signed epistemologies by embracing multiple sign-language modalities. The development of signed literatures is intimately linked to the possibilities of video editing and of translation between signed and oral languages. These subjects have been raised in a variety of scientific works of crucial importance. Indeed, editing software for sign languages40 and new, avatar-based, translation technologies already exist. However, when I surprise myself by thinking about what these technologies could look like in 2050, it seems that all we have today are a few tentative and prototypical first steps. Actual two-dimensional sign-language writing systems are certainly useful, but digital technologies and videographic writing allow us to imagine producing signed knowledge far beyond textual typographic writing. We must push the limits and uses of media technology in order to create even more opportunities to facilitate the development of signed knowledge and Deaf becoming.

Acknowledgments Translated from the French by Catriona LeBlanc. This text is inspired from my unpublished PhD dissertation. I would like to extend warm thanks to my PhD supervisor Line Grenier for the rich conversations throughout my doctoral research process (2011–2015); Émilie Boulet-Levesque, 226

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Daz Saunders, Pamela Witcher, Theara Yim, Hodan Youssouf, my family, Deaf actors and production team for their precious participation and collaboration to the research and to the graphic novel; Alexandre Baril for his constructive reading of the text; Gerard Goggin for funding the translation; the Fondation des Sourds du Québec (Foundation of the Deaf in Quebec) for a scholarship; and the Social Sciences and Humanities Research Council of Canada for the Vanier Scholarship that funded my doctoral studies and the dissemination of my research.

Notes 1 Alfred Metallic who defended the first Indigenous-language thesis in Canada quoted in Sandra McLean, “PhD Student Defends Thesis in Mi’Gmaw Language, a York First,” YFile, York University’s Daily News, November 24, 2010, http://yfile.news.yorku.ca/2010/11/24/phd-student-defends-thesis-in-migmaw-lan guage-a-york-first. Deaf academics are still emerging in Canada. Evan Hibbard was the first academic to produce a PhD in ASL and English, and I was the first to produce a PhD in LSQ and French. In 2018 there are six Deaf university professors in Canada, including me as the first in Québec. 2 Among others, the anthropologist Frank Bechter has insisted on the need of innovative translation and distribution strategies in order to foster Deaf perspectives. Interested readers can refer to Frank Bechter, “The Deaf Convert Culture and Its Lessons for Deaf Theory,” in Open Your Eyes: Deaf Studies Talking, ed. L. Bauman H-Dirksen (Minneapolis: University of Minnesota Press, 2008), 60–79. 3 Literally translated as “it fell into a deaf person’s ear,” the expression is a play on the French expression “Ce n’est pas tombé dans l’oreille d’un sourd” (“it did not fall into a deaf person’s ear”), which means “to be heard, to be taken in consideration.” The French expression also implicitly and pejoratively suggests that Deaf people do not understand and take nothing into consideration. This paradoxical evocation of the original French expression hence merits consideration from a Deaf perspective—that’s why it does indeed fall on Deaf ears. 4 Véro Leduc, C’est tombé dans l’oreille d’une Sourde, bilingual digital graphic novel in LSQ and French (Montréal: Distribution Le Vidéographe, 2016), https://vimeo.com/channels/bdlsq. 5 Mainly intended for an adult readership, graphic novels are usually longer comic books propitious for documentary and in-depth narratives as well as for realistic aesthetic. Interested readers can refer to David A. Bernonä, Wordless Books: The Original Graphic Novels (New York: Abrams, 2008). 6 Véro Leduc “C’est tombé dans l’oreille d’une Sourde: la sourditude par la bande dessignée” (PhD diss., Department of Communication Studies, Université de Montréal, 2015). 7 The integral graphic novel is composed of ten video chapters available online (https://vimeo.com/chan nels/bdlsq), each featuring an encounter with a Deaf person or a member of my hearing family. A short 16-minute film has been made for public distribution and festival screenings and is available online with English speech bubbles (https://vimeo.com/221637869). It was released at the Montreal International Documentary Festival (RIDM) in 2016 and won an award for the best experimental film at the Toronto International Deaf Film and Arts Festival (TIDFAF) in 2017. 8 The Research Group on LSQ and Deaf Bilingualism (Groupe de recherche sur la LSQ et le bilinguisme sourd à l’Université du Québec à Montréal) has created a chart of handshapes, included in the dissertation of Julie Chateauvert “Poétique du mouvement: ce que les langues des signes font à la littérature” (PhD diss., Université du Québec à Montréal, 2014), https://archipel.uqam.ca/7739/1/D2704.pdf. 9 The “ninth art” is an expression to designate comic books and graphic novels. Morris and Pierre Vanker, “Neuvième Art, musée de la bande dessinée,” Spirou no. 1392 (1964). 10 Jacques Derrida, De la grammatologie (Paris: Minuit, 1967): 43, original translation from French. 11 Notably, Ferdinand de Saussure considers writing “a system of representation of oral language.” See Derrida, De la grammatologie, 49. 12 Roch-Ambroise Auguste Bébian, Mimographie, ou Essai d’écriture mimique, propre à régulariser le langage des sourds-muets (Paris: Louis Colas, 1825). 13 In ASL, the sign for “to sign” can be divided and broken down into the handshapes “s,” “i,” “5” and “s” strung together, hence the name. Other sign-writing systems exists, including but not limited to HamNoSys, SignFont, ASLphabet and SignScript. 14 Louis-Félix Bergeron, “Pertinence d’un système d’écriture pour la langue des signes québécoise” (Master’s Thesis, Montréal: UQAM, 2004). 15 Patrice Dalle and Juliette Dalle, “Langues des signes, enseignement et nouvelles technologies,” La nouvelle revue de l’adaptation et de la scolarisation no. 64 (2013): 189–202.

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16 Jane Norman, Deaf Filmmakers: Take One! Opening Night, ASL video translated in English (Toronto: Deaf Culture Centre, 2008); John S. Schuchman, “The Silent Film Era: Silent Films, NAD Films, and the Deaf Community’s Response,” Sign Language Studies 4 (2004): 231. 17 Fernand Léger quoted in Tom Gunning “The Cinema of Attractions: Early Film, Its Spectator and the Avant-Garde,” Wide Angle 8 (1986): 3–4. 18 Christopher B. Krentz, “The Camera as Printing Press: How Film Has Influenced ASL Literature,” in Signing the Body Poetic: Essays on American Sign Language Literature, ed. H-Dirksen L. Bauman, Heidi M. Rose and Jennifer Nelson (Oakland: University of California Press, 2006), 51–70. 19 Although Deaf people are not mute (vocal chord function is not associated with organs used for hearing or language), their different way of speaking, refusal to do so and non-vocal dimensions of sign languages have traditionally been linked to muteness. Frequent association of deafness and muteness is a form of audism due to the suggestion that Deaf people cannot speak and have nothing to say. 20 J. C. Amman, A Dissertation on Speech (London: S. Low, Marston, Low and Searle, [1700] 1873), 2, quoted in H-Dirksen L. Bauman, “Audism: Exploring the Metaphysics of Oppression,” Journal of Deaf Studies and Deaf Education 9 (2004): 243. 21 Lewis J. Dudley quoted in Bauman, “Audism,” 243. 22 International Congress on the Deaf, Report of the Proceedings of the International Congress on the Education of the Deaf: held at Milan, September 6th–11th, 1880 (London: W. H. Allen, 1880), 4, https://gaislandora.wrlc. org/islandora/object/rarebooks:56 23 Pamela Witcher, Geneviève Deguire, Julie Chateauvert and Dominique Lemay, “La communauté sourde québécoise,” À bâbord! Revue sociale et politique no. 53 (2014): 5:53–6:19. Bilingual citation in LSQ and French, original translation from the French version. www.ababord.org/La-communaute-sourdequebecoise. 24 Katherine Jankowski, Deaf Empowerment: Emergence, Struggle and Rhetoric (Washington, DC: Gallaudet University Press, 1997), 9. 25 This date marks the arrival on the American continent by Christopher Columbus, that is to say the beginning of the colonization of Indigenous people and their lands. Despite their metaphoric power, reducing comparisons between colonialism and oralism or between racism and audism have been criticized with reason during discussions, such as at the Deaf Academics and Researchers Conference in Copenhaguen (2017), as as it erases specific oppression lived by Indigenous Deaf people and racialized Deaf people. I would like to thank particularly Rezenet Moges and Onudeah Nicolarakis for the critical reflections and shared discussions. 26 Paddy Ladd, Understanding Deaf Culture: In Search of Deafhood (Buffalo, Toronto, Sydney: Multilingual Matters, 2003), 3–4. 27 Gerard Goggin and Christopher Newell, “The Business of Digital Disability,” Information Society 23, no. 3 (2007): 159–168. 28 An avatar is an animated character. There are videos explaining the creation process for signing avatars, including: The Making of “The Forest”: An ASL Story (Washington, DC: Vcom3D, 2008) 1:44, www.you tube.com/watch?v=u1imqBc-RW8; and Automatic Sign Language (IBM UK and Ireland, 2012): 3:43, www.youtube.com/watch?v=bGWrqjElrPQ. 29 Sipho, directed by Braam Jordaan, Trailer (2011), www.braamjordaan.com, 1:24, www.youtube.com/ watch?v=32SS4SiWjvM. 30 J. R. Kennaway, J. R. W. Glauert and I. Zwitserlood, “Providing Signed Content on the Internet by Synthesized Animation,” ACM Transactions on Computer–Human Interaction 14, no. 3 (2007): article 15. 31 I generally use the medium of video to deconstruct specific social norms and make minoritized voices “heard.” The videos and compilations that I have produced “give voice” to disabled children, sex workers, people living with HIV, queer and trans people, Indigenous people, refugees and undocumented people. My habit of using phonocentric expressions such as “giving a voice” is what gave rise to the paradox of using such a phonocentric language in relation to Deaf issues, something I wanted to highlight in the graphic novel. 32 Animated characters, simplified features, exaggerated contrasts and the black and white aesthetic are a few examples. 33 Developed primarily by Afro-American feminists such as Kimberlé Crenshaw, the concept of intersectionality allows the study of how various social belongings interact in subjectively constitutive ways. 34 On this subject, refer to Véro Leduc, “Diversity: LGBTQI,” in The Deaf Studies Encyclopedia, ed. Genie Gertz and Patrick Boudreault (Los Angeles, CA: Sage, 2016), 315–319. 35 Nick Couldry, Why Voice Matters: Culture and Politics After Neoliberalism (Los Angeles, CA: Sage, 2010), 1.

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36 Because my family members do not sign, their comments were interpreted by Deaf people in the graphic novel. However, the text presented in speech bubbles reflects original French-language excerpts of original interviews. 37 Véro Leduc, “Est-ce vraiment une bande dessinée? Langues des signes, Déconstruction et Intermédialité,” Canadian Journal of Disability Studies 8, no. 1 (2019): 58–97. 38 Gilles Deleuze and Félix Guattari, Capitalisme et schizophrénie 2 (Paris: Minuit, 1980), 338. 39 Derrida, De la grammatologie, 43. 40 Annelies Braffort and Michel Filhol, “Constraint-Based Sign Language Processing,” in Constraints and Language, ed. Philippe Blache, Henning Christiansen, Verónica Dahl, Denys Duchier and Jørgen Villadsen (Newcastle: Cambridge Scholars Publishing, 2014), 191–218.

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PART III

Media Technologies of Disability

21 GIMPGIRL Insider Perspectives on Technology and the Lives of Disabled Women Jennifer Cole and Jason Nolan

There has been a great deal of inquiry into the impact of the Internet and information communication technologies (ICTs) on the lived experience of various groups and individuals, as well as how connections and community are formed and maintained. There is also an increasing body of research focusing on the online experiences of disabled people. However, this research is marred due to an embedded bias inherent in the academic framework. Even when researchers conduct studies in an inclusive manner,1 the research is often directed by non-disabled researchers and programs of research that arise from ableist standpoints.2 Some researchers have suggested that social media brings together disadvantaged groups due to the relative anonymity of online communication and lack of geographical constraints, and would allow groups to address larger societal imbalances.3 Other research highlights the Internet as a useful tool to educate individuals with disabilities on topics that they would not otherwise have access to,4 as a space for support groups for people with various types of disabilities5 and as an environment where perceived freedom of speech is a possibility for diverse populations.6 However, while these topics are important, much of this research focuses on the purported ability of the Internet to turn disabled individuals into a “competent normal subject,”7 rather than understanding that many disability activities and communities often redefine, rather than embrace, the normalizing imperative.8 The authors both have long-standing involvement with GimpGirl. Jennifer Cole is a founding member and director of the GimpGirl community and Dr. Jason Nolan has worked with GimpGirl for over 15 years. This history is largely a narrative written from Jennifer’s perspective as an administrator and member of a community that is almost completely built from within, so mentions of we/our/us in the text are in reference to all of the individuals that are involved in and build the community in general. This chapter explores the history of GimpGirl (gimpgirl.com) from 1998 to the present9 as an attempt to focus attention on inquiry into online disability communities by and from the perspective of disabled researchers, as well as to share our experience forming and maintaining a community of individuals who are brought together by their commonality as disabled women. This online community is unique in that it is run by and for disabled women. We initiated the community, set topics of communal interest, work together to ensure that the ideas behind universal accessibility are realized and have constructed an extraordinary environment in which women with diverse forms of disabilities come together to learn from each other and grow as individuals and within their offline lives. We have defined the parameters of governance, and 233

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collectively decide how to best keep the community spaces as safe as possible for all members. Members of GimpGirl are not recipients of a service by an external agency, but rather the creators of a shared environment that works for us, where we define expectations, goals and agendas.

The Beginning GimpGirl was formed in 1998 initially as a project of the Center for Breaking Away, a nonprofit organization that was formed by Jennifer Cole and Len Burns to support disabled youth in transition in California. Living with different disabilities themselves, Jennifer and Len had a strong interest in supporting others who were facing the same challenges of living independent lives. The GimpGirl sub-project was spearheaded by Jennifer, and was shaped by collaboration among young disabled women who were also interested in forming a community that understood their needs separate from the institutionalized, corporate services that may (or may not) have been available. Though the Center for Breaking Away eventually dissolved, GimpGirl endures 19 years later. GimpGirl was initiated as a forum to bring disparate disabled women together using the technology that was available at the time, and this has remained our focus. The founding members were teenagers who were very involved in communication technologies through work experiences and programs such as the University of Washington’s DO-IT program (www.washington.edu/doit), who all had an interest in forming a safe place online where women with disabilities could share their stories and be themselves without fear or judgment. GimpGirl fulfilled the need for disabled women to be able to offer each other peer support; something that was unavailable in most local settings at the time. The main domain that came to be used by the community (gimpgirl.com) had been registered in February 1998 as Jennifer’s personal domain, but was soon dedicated entirely to GimpGirl community activities. From this unanticipated beginning, GimpGirl was one of the first, and is certainly the most enduring, online community for disabled women. The lives of all founding members were enmeshed in various government systems, non-profit corporations and institutions that had an undeniably negative affect on their sense of self and lives as disabled women. While institutions provide necessary supports, such as medical care and funding for caregivers, they are rife with endless frustrations, marginalizations and Otherings, as well as visible and systemic forms of oppression from social services and medical institutions.10 In order to access the services that make life possible, women with disabilities must constantly survive uncaring bureaucracies and experience devastating struggles with self-advocacy and sacrifice, fully aware that the medical and social institutions require passive, somewhat infantilized and thankful clients to be serviced in order to validate their existence and their funding.11 For these women, constructing a “safe place” involved not only creating a place free of predators and ableist judgment, but also a place that was free of institutional bias and false preconceptions of disabled women, where we were free to be valued individuals among peers who understood at a very core level that the barriers we face are only a small piece of who we are as individuals. Though GimpGirl was originally part of a non-profit, and occasionally partnered with other non-profits and educational institutions for the health of the community, we were never comfortable with adopting an institutionalized structure of a non-profit or academic affiliate in the long term. Members felt a need to distance themselves from the institutional bias they felt would curtail their freedom to approach issues however they saw fit within these more traditional ableist structures. GimpGirl’s founding members brought with them different life experiences, goals, needs and interests that are still reflected in the diverse values of the community. Unlike communities and organizations that give the impression that they are universally accessible without follow-through, 234

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Jennifer and other members absolutely insist that all of the services that GimpGirl provides be accessible to all members. Not only was accessibility important from a personal perspective because of friendships and personal values, but many founding members had often been denied access to various disability organizations because they did not fit specific membership criteria (such as a certain medical diagnosis) or had multiple disabilities, which many institutions still struggle to support. It has always been critical to us that women feel welcome within GimpGirl spaces for who they are, regardless of any particularities of diagnosis or needs. The lives of disabled people are always dependent on technology of some form or another. As community mentor, and autistic, Professor Jason Nolan was recently quoted: “Some of us can live with the world ‘as is,’ but people with disabilities have to hack the world so that their needs are met.”12 In an article on disability and technology for Yahoo! Accessibility, in 2011, Jennifer similarly characterized people with disabilities as the original Cyborgs.13 Activities that ablebodied individuals take for granted, such as walking, communicating, eating, dressing and even breathing, often require technological supports for people with disabilities. The founding members of GimpGirl were active users of much of the Internet technology available in the late 1990s, and integrated their shared understanding of ICTs into our founding ideas of how to help disabled women connect with each other. Over time, the use of certain ICTs has waned. Over the past 19 years, emerging technologies have been evaluated and incorporated into GimpGirl’s practices in keeping with needs and interests of the community and the goal of inclusive community support. The basis for consideration of which technology might be adopted into the community was based on an assessment of how it increased access to a significant population of disabled women. Accordingly, rather than setting up shop and expecting members to come to us and use the technologies we chose to adopt, we went to where people were and adapted the technologies available to our shared and ever-changing needs. Before the adoption of any technology, however, a thorough evaluation of accessibility to all members was done, as well as a thorough consideration of the burden of maintenance on our volunteer admin team. Since 1998, as we adopted various synchronous and asynchronous technologies, moving through Internet relay chat (IRC), newsgroups, threaded discussion lists, listservs, blogs, Moodle, Second Life, back to blogs and on to Facebook, the goals, interests and needs of the women who made up the GimpGirl community have always come first.

History of ICT Use: A Tale of Many Platforms GimpGirl has never focused on one “ideal” technology, but rather mixed and matched a palette of ICTs to meet the needs of members and community leaders. Founding members started with a text-based collaborative virtual world called SerenityMOO,14 where much of the initial planning for the community took place. To supplement this use of a virtual environment, a website and several email listservs were created on servers that founding members had free access to through the Internet service provider that was operated by Jennifer and Len. The initial email lists were focused on themes such as transitioning to adulthood, art and culture and LGBT issues. Even though topics could be very graphic and emotional at times, a constant effort was made by both community leaders and individual members to create an environment where everyone felt accepted and even empowered.15 GimpGirl community leaders had to be constantly engaged in the flow of communication on every community outlet, and initially felt it was safest for everyone involved to moderate every message sent to each listserv. While this created a lot of busywork for community leaders, it was necessary to keep the focus on acceptance and progress. In 2003, GimpGirl opened a new community portal using the LiveJournal blogging platform in an effort to continue growing the community and reach out to individuals on technology that 235

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was being increasingly utilized by disabled women at the time. Shifting from a listserv to this more technologically sophisticated platform reduced the daily responsibilities of the moderators because of the moderation tools built into the LiveJournal environment. All email lists were transferred to LiveJournal, and, for a while, it became the community’s sole asynchronous portal. The next major ICT shift for the community happened in 2008, shortly before Lucy Macdonald joined Jennifer as an assistant director. GimpGirl opened a Facebook group and Twitter account to accompany the opening of a new location in Second Life. Second Life was a graphical version of text-based virtual environments, such as SerenityMOO where we had begun our activities. The idea of a shared synchronous virtual environment, where participants could construct spaces and even identities was appealing to us. A parcel of virtual “land” in Second Life was donated to the community by University of Colorado neurobiology Professor Mark Dubin to support outreach to the large disability population already using this platform.16 GimpGirl outgrew this original virtual space and the community eventually partnered with first the EDGE Lab at Ryerson University and later the Center for Research on Women with Disabilities (CROWD) at the Baylor College of Medicine to maintain a presence in Second Life.17 Partnering with private and educational institutions in this way allowed the community to explore the possibilities of immersive virtual environments, such as Second Life, for free, and ensure that we could be present in locations where women with disabilities were active. The possibilities that new ICTs afforded, and the desire to connect with disabled women where they were active, meant that we were open for any new challenge. Along with Second Life, Twitter and Facebook, a new version of the gimpgirl.com website was launched using the Moodle platform, something leaders were familiar with from outside projects. Despite aspirations to use the platform for classes aimed at informing the public on issues that are important to the community, we soon realized that this platform did not meet the community’s needs. As a volunteer organization, without funds to support a full-time website manager, we couldn’t sustain such a labor-intensive technology. After some research, GimpGirl transitioned to WordPress because of its ease of use and management. It was easier for community leaders to maintain, especially because its interface is more user-friendly to volunteers who were not as tech savvy. WordPress provided a fully accessible and inclusive front-end to the community, where information could be shared with the public on topics such as managing caregivers, balancing relationships and on community issues such as the horrific inaccessibility of emergency homeless shelters. Although it was not easy to create a website-specific forum such as we had on Moodle, WordPress provided community leaders with far more flexibility and tools for security. More importantly, it allowed for the creation of new services and better accessibility via pre-existing plug-ins in a way that was easier than on other platforms. Plug-ins to judge the “grade level” that articles were being written at, as well as other tools that helped guide the writing process, helped community leaders tailor content in a way that was accessible to a larger audience. Despite our initial enthusiasm for Second Life, we initially ran into a number of accessibility issues with adopting Second Life for any type of community activity without violating the tenant that all services must be accessible to all members. Because Second Life it is a virtual world with a sophisticated graphical interface, it is largely inaccessible to both people requiring screen readers and people who have difficulty with this type of interface from a visual perspective (because of balance and processing issues). Though there was an effort by IBM researchers to make an accessible, non-graphical interface to address these issues,18 the project never fully developed an interface that allowed for the same level of engagement in the virtual world due to technical constraints and lack of ongoing support. In an attempt to ameliorate problems faced by lowvision members, as well as those faced by individuals who did not have powerful enough computers or Internet connections to run Second Life, we adopted a tool developed by the operators at the Quickfox Network. The tool relayed text back and forth between a simple text-based 236

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Internet relay chat (IRC) channel and particular areas within Second Life, so that meetings could happen in real time between people on either platform. In time, activity in Second Life died out, and the live GimpGirl meetings were reduced to once a month on this platform. Community leaders, along with input from members, decided that the precious amount of volunteer energy was no longer well spent on weekly virtual meetings that had limited attendance. Eventually, the Facebook group took over both some of the more frequent synchronous communication of Second Life and the asynchronous role that LiveJournal and later WordPress had filled. The ubiquitous nature of Facebook is such that many people already use it to on a daily basis to communicate with strangers, colleagues, family and friends on every topic imaginable. With so many individuals already active, focusing on this platform allows community leaders to make the best use of limited energy resources. Twitter continues to be employed as a supplemental way to distribute important information and to highlight member’s articles and accomplishments. GimpGirl leaders and members will continue to evaluate technologies as they develop.

Language The language that surrounds disability is often fraught with tension and debate from many different angles. Many outsiders question the identity-first language19 of the name “GimpGirl” because it does not fit with professional norms or propriety. Some feel that disabled women should present a self-affirming inspirational image, while others expect a more passive and pitiable presence. GimpGirl takes more from the “in your face” ethos of the Riot Grrrl music movement and the feminist arts collective Guerrilla Girls,20 both active in the 1990s. The name was originally Jennifer’s playful and ironic nickname among her friends, but it was adopted because it represented the spirit of the community. The parent of a colleague touched on it perfectly when she noted, “At first, ‘GimpGirl’ seems rude but when I think more on the term, it is upfront and confident and takes away any sense of pity.” People within the community understood the value of adopting the subversive name and identify with it as a means of standing in solidarity against damaging societal norms and stereotypes.21 Using the name GimpGirl highlights the fact that we are not looking for pity, or even for people outside the community to understand us or our choices. We were looking for our own community with which to face challenges and share successes. The choice of name did cause some confusion in the process of conceptualizing and democratically constructing the community because the name is specifically related to physical disabilities, despite the community’s collective passion to be as cross-disability as possible. In the larger realm of disability organizations, it is relatively rare that a particular organization serves more than one type of disability. The GimpGirl Code of Conduct outlines our expectations for members of our community: All members are expected to work with facilitators and other members to create an inclusive, cross-disability accessible environment. No videos can be posted to any community space without closed captioning added. No pictures can be posted without a typed, plain text description attached. If someone needs time to type in synchronous, real-time chats, members are expected to respect that request.22 Because GimpGirl focuses on the central identities of being female and disabled, rather than on specific diagnoses, a new environment where diversity is prized had to be built from within us and our lived experience. Community managers, along with all active members, constantly work 237

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to set community rules, educate each other and find the commonalities that bring them together despite a very diverse range of life experiences. The development of co-constructed community rules is important to keep a cohesive message and environment across all utilized technologies.

Governance The governance structure of GimpGirl followed a trajectory that was unique for the time. Unlike many non-profits, especially in the disability world, GimpGirl was managed very democratically from inside the community in a completely voluntary manner. Finding financial streams has never been a focus. While the community has partnered with other organizations, GimpGirl has never received a grant or any money beyond occasional member donations to cover incidentals like office supplies and travel expenses to represent the community at educational and technical conferences.23 It is important to note that GimpGirl is an international organization with participation from most countries with significant English-speaking populations. But developing further into a global non-profit charitable organization could move GimpGirl away from its participatory and democratic roots. The majority of the technical and human resources used by the community take the form of “in kind” donations from personal friends and allies of the community, which allows community leader volunteer hours to be focused on actually providing services and support. While many organizations require income to provide services, this community dynamic does not require a percentage of human resources be dedicated to constantly finding income sources. None of the core “staff” members have ever been paid. In addition to a shared passion for seeing this type of community continue, any paid employment would severely impact the lifesustaining social services that many community leaders rely on. As disabled women who survive on disability pensions and supports, it is not a viable option to risk losing critical benefits through unreliable or minimally paid employment. For many community leaders, an income well above the average for any country would be required to compensate for lost benefits, which is not practical in this type of organization. We volunteer our time, at least in part, because there is no other option and the risks of employment far outweigh the potential benefits that a part-time job working for a non-profit might provide. As with many self-initiating online communities, the majority of the volunteers start as members who come to the position with their own set of barriers, such as limitations on energy and health struggles.24 While this can cause issues in the course of leading a community, it is primarily seen as a benefit within this circle of community leaders. If one of us is struggling with such a barrier, we simply need to inform the other administrators, who very much understand dealing with these issues and can step in and lend a hand. We see our individual drives for autonomy and independence as part of a shared inter-dependence where our strengths and weaknesses complement and inform our overall community. This communal, woman-centered approach is very different from the institutional parental and top-down form of engagement that our members grew up experiencing in hospitals, educational institutions and family settings. However, in this particular team, communication and flexibility is paramount to our success and longevity. The combination of cross-disability goals and the use of ICTs to co-create a safe, supportive environment was fairly radical for the time and has necessitated a great deal of creative management over the years. It is important to remember that the first disability studies program in the United States was founded in 1994 at Syracuse University,25 scarcely four years before GimpGirl opened shop. Community managers not only had to understand how to support and refer peers in crisis, we also had to understand how to use available technology in a responsible and safe manner.26 For founding members who were already very involved in the early Internet, it made sense that the available technology would facilitate all of their community goals, but as time went 238

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on it was sometimes difficult to find volunteers who understood how to integrate support of real human beings (that they often had no face-to-face contact with) and also how to keep those human beings safe while being vulnerable in a virtual world where predators and hatred are commonplace. To address safety needs, it was critical that new volunteers were trained in how to use available tools based on models we developed ourselves. Many of the pre-existing technologies used by the community have tools available to control access to various forums or virtual areas, as well as procedures to follow in case an individual managed to breach those controls. A community leader who understands how to use these tools was always available, particularly during live or high-profile events that might draw attention. In order to help with crowd control and safety, the community also worked together to write a code of conduct that served everyone’s needs and evolves if needed.27 Community leaders use this code of conduct to judge whether an individual is welcome within community spaces. Because of the inclusive nature of shared goals and responsibilities, there is always an opportunity for consensus building as to how to handle situations and as such GimpGirl has always thrived as a community. While management procedures shifted over time to accommodate the needs of the community, leaders have always tried to include members in the process of any decisions that would affect the overall community or the environment with which they have co-created. Larger decisions that may affect the balance of the community are often put out for member comment to foster ownership and agency in the community. Because it is a community that all participants create together, member effort and interaction are very important. The following example from the GimpGirl Facebook group where community leaders solicit member input on the ever-evolving creation of the virtual environment is typical of the kinds of questions that come up for discussion with community members: Trigger Warning. I have a question for everyone in regards to the management of GimpGirl. Like many people involved, I constantly see stories of the abuse that is so prevalent within this community. Historically, I have avoided flooding this group with links to those stories, because I figured it would do more harm to the environment that we have created. I think most of us know, either from personal experience or from being involved in the larger community, that abuses happen every day. Do you think it does good from a “reminder of why we fight” perspective to see these stories on a regular basis, or do you think it would change the environment of this group negatively?28 The responses to this inquiry indicated that the vast majority of members were well aware of the prevalence of abuse among disabled women, both from personal experience and also from their own advocacy work separate from their participation in GimpGirl, and they preferred to not be exposed to regular examples of these horrific acts. They agreed that such posts shared on a regular basis would affect the overall tenor of the community negatively, and also would trigger their own personal issues in a way that would make it difficult for them to continue to regularly engage in the community. The community managers facilitated the discussion thread on this topic to fully explore the perspective of all members, and ultimately respected the majority opinion. In addition to Facebook, and other technologies that are still active to various degrees, member feedback is solicited through the use of a copy of LimeSurvey, which is installed on private GimpGirl servers. Community managers set up surveys to gather feedback on topics such as management of synchronous support meetings that is posted at the end of meetings, and also to gather useful information that can be collated and publicly displayed for the benefit of all, such as personal experiences with the accessibility of gynecological services that may aid others in selecting a gynecologist that will meet their needs. Member feedback is a crucial part of the 239

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management of a community like GimpGirl, both because it is an environment that is created to meet the needs of all members and because the management team for smaller communities tends to be limited in scale, requiring the participation and “buy-in” of all members. Recognition of the efforts of members to create a welcoming cross-disability environment is crucial. Particularly since GimpGirl has always attempted to create a welcoming environment for such a diverse crowd of people, individuals need to know that their efforts mean something. This example was posted by Jennifer on Facebook: I’ve been thinking about something a lot the last couple days, and I just wanted to share it with everyone. I often find myself feeling proud and grateful for the things that we accomplish together as a community. The conversations we have and the way we stick by each other means everything to me. I am also deeply humbled and thrilled that we have built such a diverse community that includes active participants with every type of disability, and that we are able to learn from each other, find our commonalities, and grow as individuals. That is not always an easy thing to accomplish, and it requires the active participation, understanding and dedication of every single person involved. So, from the bottom of my heart, thank you!29 Governance of a community like GimpGirl absolutely requires, and is indeed a reflection of, the participants involved. Community tenets and practices must value the perspectives and diversity of members to fully include them in the governance process.

Access to Technology The history of the Internet has shown that even corporations with endless resources have difficulty enticing people to other technologies and platforms, and founding members understood this issue early on. We understood that it was a far shorter path to our community goals if we used preexisting technologies that were already being utilized by our target population. Since the founding members were part of the target population, we started with the tools that had brought us together in the first place: email listservs and the early text-based virtual world system of MOO. In time, we discovered that this use of both synchronous and non-synchronous ICTs allowed for a better accommodation of most, if not all, members’ needs. Many different people, with different adaptive technologies, needed to access the different ICTs used by the community. Some people felt more comfortable in a fast-paced, highly interactive virtual world environment, whereas others struggled to keep up with the pace and knowledge threshold required and felt much more comfortable using non-synchronous technologies where they could take time to compose messages. It was also important to the community to look at accessibility beyond the more obvious accommodations. When most people think about accessibility in an online environment, they think about closed captioning on videos and text descriptions to accompany pictures, but the concepts of universal accessibility that are important to the members of the community go beyond these simple accommodations. Not only are different virtual environments better suited to different individuals, there are barriers to even getting online for many people with disabilities due to financial and practical constraints within their lives. Even when that barrier has been overcome, there is a great deal of learning and individualized accommodation that must take place before an individual can even operate ICTs. While it is difficult for this type of community to address physical access to technology, a community spirit of co-mentorship had to be fostered in order to help fledgling members who are new to ICTs in general to access GimpGirl’s community outlets. 240

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Conclusion GimpGirl’s strengths are grounded not merely in the wisdom gleaned through many years of existence, but also in its radical approach that led to the inclusion of women with all manner of disabilities, who learn from each other in order to set community rules and progress together. GimpGirl’s history closely follows the development of Internet technologies because these technologies are the glue that holds all members together in a very real way. Not only do many members rely on technology to keep them connected to a progressive community that understands them, these technologies allow previously disparate disabled women to come together in a way that was not possible before in most real-life community contexts. GimpGirl collectively uses ICTs and social technologies to form a long-standing community that focuses on the lived experience of having a disability, rather than specific diagnoses, so that individuals learn from each other, stand by each other and realize that they all face very similar things that can be worked on together.

Acknowledgments The authors would like to thank Len Burns and Lucy Macdonald for their input and help with editing this chapter. This chapter is funded in part by grants from the Canadian Foundation for Innovation and the Ontario Ministry of Research and Innovation.

Notes 1 Jennifer Cole, Jason Nolan, Yukari Seko, Katherine Mancuso and Alejandra Ospina, “GimpGirl Grows Up: Women with Disabilities Rethinking, Redefining, and Reclaiming Community,” New Media & Society 13, no. 7 (2011): 1161–1179. 2 Fiona Kumari Campbell, “Exploring Internalized Ableism Using Critical Race Theory,” Disability & Society 23, no. 2 (2008): 151–162; Jason Nolan and Melanie McBride, “Embodied Semiosis: Autistic ‘Stimming’ as Sensory Praxis,” in The International Handbook of Semiotics, ed. Peter Trifonas (Berlin: Springer, 2015): 1069–1078. 3 Cole et al., “GimpGirl Grows Up.” 4 Stephanie Pendergrass, Margaret A. Nosek and J. David Holcomb, “Design and Evaluation of an Internet Site to Educate Women with Disabilities on Reproductive Health Care,” Sexuality and Disability 19, no. 1 (2001): 71–83. 5 J. Finn, “An Exploration of Helping Processes in an Online Self-Help Group Focusing on Issues of Disability,” Health and Social Work 24, no. 3 (1999): 220–231. 6 Natilene Bowker and Keith Tuffin, “Disability Discourses for Online Identities,” Disability and Society 17, no. 3 (2002): 327–344; Cole et al., “GimpGirl Grows Up.” 7 Ingunn Moser, “Disability and the Promises of Technology: Technology, Subjectivity and Embodiment Within an Order of the Normal,” Information, Communication and Society 9, no. 3 (2006): 383. 8 Nolan and McBride, “Embodied Semiosis.” 9 Online communities measure their success and impact within their community based on raw numbers of followers. Our numbers remain steady and our primary points of contact are our private Facebook group with over 800 members, Second Life with approximately 150 active members and our Twitter account with almost 9,000 followers. GimpGirl is well established within the disability community, but it has never been our goal to work to increase membership for its own sake, because we feel that it would negatively impact our ability to meaningfully engage with each other. As a support community, large numbers diminish opportunities for personal connections. We have always preferred to keep our member base small for this reason. Additionally, the administrative team that runs GimpGirl is made up of disabled women with limited resources and keeping our community small helps us prioritize those resources. 10 Ivan Illich, Deschooling Society (New York: Harper & Row, 1971); Nolan and McBride, “Embodied Semiosis”; Devva Kasnitz and Russell Shuttleworth, “Engaging Anthropology in Disability Studies,” in Semiotics and Disability: Interrogating Categories of Difference, ed. L. J. Rogers and B. B. Swadener (Albany, NY: SUNY Press, 2001), 19–42.

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11 Michael Foucault, Madness and Civilization (New York: Pantheon, 2009); Devva Kasnitz and Russell Shuttleworth. “Introduction: Anthropology and Disability Studies,” Disability Studies Quarterly 21, no. 3 (2001): 2–17. 12 Stephen Knight and Alex Mlynek, “Creating a World Where Every Child Is Free to Play,” Ryerson University Magazine Winter (2016): 13. 13 Jennifer Cole, “Original Cyborgs: Disability and Technology on Yahoo Accessibility,” accessed December 28, 2015, www.gimpgirl.com/2011/05/23/original-cyborgs-disability-and-technology-on-yahooaccessibility. 14 SerenityMOO, accessed December 28, 2015, www.washington.edu/doit/serenitymoo. 15 Cole et al., “GimpGirl Grows Up,” 1168. 16 Cole et al., “GimpGirl Grows Up,” 1170. 17 These spaces are structured as a small building with meeting rooms, informal gathering places and open spaces in a park-like setting where members gather for organized discussions, meeting and informal social events. 18 “IBM AbilityLab Virtual Worlds Accessible User Interface,” IBM.com, accessed February 1, 2016, www03.ibm.com/able/accessibility_research_projects/virtual_worlds_accessible_UI.html. 19 United Cerebral Palsy, “Tools for Reporters: Disability Etiquette,” accessed December 30, 2015, http:// ucp.org/media/tools-for-reporters. 20 Guerrilla Girls, “Frequently Asked Questions,” accessed February 4, 2016, www.guerrillagirls.com/inter view/faq.shtml. 21 Cole et al., “GimpGirl Grows Up,” 1167. 22 “Code of Conduct,” GimpGirl.com, accessed August 5, 2015, www.gimpgirl.com/about-us/code-ofconduct. 23 Jennifer Cole, “How GimpGirl Works,” GimpGirl.com, accessed September 2, 2015, www.gimpgirl.com/ 2014/01/27/how-gimpgirl-works. 24 Jason Nolan and Joel Weiss, “Learning Cyberspace: An Educational View of Virtual Community,” in Building Virtual Communities, ed. K. Ann Renninger and Wesley Shumar (Cambridge, UK: Cambridge University Press, 2002), 293–320. 25 Cecilia Capuzzi Simon, “Disability Studies: A New Normal,” New York Times, November 1, 2013, www. nytimes.com/2013/11/03/education/edlife/disability-studies-a-new-normal.html. 26 Cole et al., “GimpGirl Grows Up,” 1171. 27 “Code of Conduct.” 28 Jennifer Cole, private post on the GimpGirl Facebook group, posted May 31, 2015. 29 Jennifer Cole, private post on the GimpGirl Facebook group, posted April 20, 2015.

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22 DIGITAL MEDIA ACCESSIBILITY An Evolving Infrastructure of Possibility Elizabeth Ellcessor

Introduction Digital and networked media, such as the World Wide Web, initially offered the possibility of many-to-many communication, flexible forms of content presentation and new means of interacting with others. Yet the development of these technologies around an able-bodied norm, seen in the graphical user interface and the rise of audiovisual content, resulted in an online environment that excluded many people with disabilities. In the words of Gerard Goggin and Christopher Newell, digital media, “the very technologies that are supposed to provide the solution to disability,” can “actually build in disability.”1 This argument stems from a social model of disability, in which disability is understood not as an individual characteristic but as the result of an inhospitable social and physical environment.2 Much scholarship on disability access has considered how the social model is implicated in design practices; when tools, technologies, spaces and services are designed for an able-bodied normative body, they reproduce and exacerbate the inequalities of disability.3 To address these exclusions, advocates have argued for increased accessibility. Accessibility is a term used to describe redesigning or supplementing exclusory structures to increase disability access. In the case of digital media, exclusions can happen at the levels of hardware, software or content and various accessibility standards have been developed to render the web, and other digital media formats, usable by and inclusive of people with disabilities. Many of these standards stem from those developed for web content accessibility—the World Wide Web Consortium’s Web Content Accessibility Guidelines (WCAG) 1.0 (1999) and 2.0 (2008) and the US Section 508 standards (2001, newly released in 2017). I refer to both WCAG and Section 508 as “standards” because they are, in the words of sociologist Lawrence Busch, “means of partially ordering people and things so as to produce outcomes desired.”4 Standards organize and direct relationships between people, institutions and technologies. Furthermore, I follow architect Keller Easterling in understanding standards as a form of infrastructure, exerting power equal to or greater than traditional forms of governance and producing particular conditions of possibility and impossibility.5 Standards, however, are not neutral; they are sites of negotiation and power. As Busch argues, standards are always a site of contestation, precisely because they have important effects in the world.6 Furthermore, standards are performative, in that they do not take on meaning until they are enacted. In the case of accessibility, the dominant WCAG standards are a voluntary form of

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governance, meaning that they rely upon the choices and actions of individuals, nations and corporations to take effect. Therefore, the history of digital media accessibility is not simply a policy history, or a timeline of events, but an uneven process characterized by tensions regarding technical specificity and intended audience. Though my focus is primarily on accessibility in the US context, these concerns are only amplified in international accessibility efforts, which must also wrestle with the nuances of different scripts, languages and legal contexts. This chapter looks to the history of web accessibility as it has evolved from a short set of guidelines to a complex framework intended to both harmonize with international legal systems and professional needs, and to allow for variety in its application to a range of systems, audiences and content. Much of this analysis is made possible through analysis of primary texts, including the records of the Web Accessibility Initiative Guidelines Working Group, the text of US laws and announcements published in the Federal Register and draft guidelines and standards documents. I have also conducted over 40 interviews with developers, policy makers and users with disabilities regarding their understandings of and experiences of accessibility; these individuals were largely based in the United States, with a smaller number hailing from other Anglophone nations. Thus, again, this history is not simply a series of events; it is a polyvocal, contested and incomplete story in which particular themes and trends can be observed and contextualized in order to better understand the relationship between disability and digital media. Ultimately, I argue that as digital media accessibility has standardized, it has also become increasingly available, flexible and amenable to diverse interpretations and applications, making it increasingly prevalent and relevant to users with disabilities; increasingly, accessibility standards act as an infrastructure that enables a range of relations between technology, disability and individual experiences.

Early Standardization, Specificity and Audiences The origins of web accessibility standards in the United States might be traced to an April 1997 meeting at the White House, at which the World Wide Web Consortium (W3C, the international volunteer governing body of the web) launched its Web Accessibility Initiative (WAI), with the support of the US Government. Initial projects were to include developing protocols and data formats to make the Web itself more accessible, including adding video and captioning elements.7 This event kicked off a process of standardization that would lead to the development of the first W3C accessibility document, the Web Accessibility Guidelines (WCAG) 1.0, and the first set of legally enforceable standards, the Section 508 standards, which applied to US federal agencies and their contractors.8 In truth, of course, there was a longer history to computer accessibility and standardization. Elizabeth Petrick has traced the history of accessibility and the personal computer, arguing that “the development of accessible technologies intersected with a history of civil rights and the emergence of identity politics,”9 and that accessible personal computer technology was at once political, legal and social, with its potential for equality reliant upon the widespread incorporation of technological access measures. I have similarly traced the history of the Internet, disability rights legislation and accessibility as they intersected throughout the 1980s, including the passage of the 1986 Amendments to the Rehabilitation Act of 1973, which introduced Section 508 of Title V, the first legal requirement for accessibility of computer equipment for people with disabilities in the federal sphere.10 Even within the narrower context of the World Wide Web, standards development was underway well before 1997. The Trace Research and Development Center at the University of Wisconsin-Madison released its first set of guidelines, “Design of HTML (Mosaic) Pages to Increase Their Accessibility to Users with Disabilities Strategies for Today and Tomorrow,” in 1995; in subsequent years, along with testing its own practices, Trace 244

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collected and amalgamated accessibility documents that were being developed elsewhere, putting together a central set of best practices. When the W3C began formulating web accessibility standards, they took version 8.0 of the Trace Center’s “Unified Guidelines” as their starting point. Once the WAI working group took over guideline development, it discovered pervasive tensions regarding technical specificity and audience. First, specificity was a sticking point, as many stakeholders wanted the guidelines to be as pragmatic and technologically detailed as possible. This was understood to serve developers and policy makers, both audiences that would need detail in order to produce code and law. On the other hand, too much specificity risked making the guidelines inflexible and causing them to lag behind technological changes. The second tension surrounded the intended audience. As Gregg C. Vanderheiden, chair of the working group, recalled: There’s such a diverse audience. We actually have policy makers who want to make policy about [web accessibility], but won’t have a technical background … We have individuals with disabilities, who aren’t going to use [the guidelines document] but want to understand what it does or doesn’t do to help them. We have people who are creating web pages, and they want to know what is it that they have to do, and how on earth do you go about doing that?11 WCAG 1.0, released in 1999, attempted to handle its diverse audience and the need for specificity through the development of several different documents, including “frozen,” inflexible guidelines and “living” notes and techniques to update technical details. Nonetheless, WCAG 1.0 was criticized for being overly complex and too technologically specific in its recommendations—many of which were “out of date by the time it was published,” in the words of one W3C participant12—and impenetrable to a non-specialist audience.13 This critique was particularly damning because, as governance without the force of law, WCAG 1.0 relied upon the diffuse community of web developers, companies and individuals adopting these guidelines and implementing the practices laid out in the techniques document. In a very real sense, these standards could not act as infrastructure without implementation; impenetrable language and complex organization, plus quickly out-of-date technical specifics, hindered this process. The US federal government was also wrangling with accessibility standardization in the late 1990s, following a flurry of legal activity related to disability rights. The Americans with Disabilities Act (ADA) passed in 1990, enshrining equal rights protections, the Telecommunications Act of 1996 broadened requirements for closed captioning and introduced Section 255, which required manufacturers and service providers to make equipment and services accessible to people with disabilities whenever “readily achievable,”14 and the Rehabilitation Act was amended again in 1998. This version of Section 508 established that a variety of digital technologies, including “Web-based information and applications,” be accessible to federal employees and required that disabled employees and members of the public seeking federal services “have access to and use of information and data that is comparable to the access to and use of the information and data” by peers who do not have disabilities.15 This version of 508 tasked the Architectural and Transportation Barriers Compliance Board (often referred to as the Access Board), with writing policies and directives for enforcement. To do so, the Access Board assembled the Electronic and Information Technology Access Advisory Committee. In addition to government personnel, participants on the Advisory Committee included leaders in accessibility from academia, the W3C, industry organizations and technology corporations, as well as disability advocates. Section 508 standards developed with a focus on legal enforceability via specificity and a presumption of a limited government audience. In 245

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a context in which federal agencies would be liable to lawsuits for failure to comply, standards needed to be made as clear as possible both to implement and to interpret, while being written in regulatory language. In order to ensure enforceability, Access Board official Doug Wakefield recalled relying on existing laws regarding disability, accommodations and physical accessibility whenever possible.16 The need for legally enforceable clarity resulted in an emphasis on specificity, and an acknowledgment that standards could only address some forms of accessibility (and some forms of disability); cognitive impairments, in particular, were prohibitively difficult to address in specific and enforceable standards. Though Section 508 standards based many recommendations on the guidelines found in WCAG 1.0, they eliminated anything requiring subjective judgments, and rephrased many other guidelines into more prescriptive legal language. The need for legal enforceability led to a clearer conception of audience than was seen in WCAG 1.0. The primary audience would undoubtedly be those web developers and managers tasked with bringing government sites into compliance with Section 508. This audience was understood to be willing to comply and merely waiting for instructions.17 Yet, this audience would expand quickly, as state governments and institutions that received federal funding (particularly universities) adopted 508 standards. The original, limited audience addressed by the standards would eventually prove a challenge, as a broader audience looked to create accessible websites that complied with the law. The Section 508 standards were published in final form in the Federal Register on December 21, 2000, and enforcement of the standards began on June 21, 2001. This concluded the initial phase of web content accessibility standardization, in which questions of technological specificity and intended audience were largely unresolved, leading to confusion and slow implementation. As mentioned, WCAG 1.0 was quickly targeted for criticism; similarly, Section 508 was quickly found to be ineffective. Various studies indicated that awareness of accessibility practices and adherence to these standards remained low in the early twenty-first century, even on sites legally required to conform to 508.18 Future development of accessibility standards would take these lessons to heart, increasingly working in concert through harmonization efforts and allowing for a variety of implementations.

Harmonization and a Professional Context The second phase of digital media accessibility standardization followed quickly on the heels of the first. The working group that produced WCAG 1.0 took only a very brief break before beginning work on updated recommendations, culminating in the December 2008 release of WCAG 2.0. The long duration stemmed from fatigue, in-fighting and conflicting understandings of the group’s work and a bureaucratic process that prioritized the construction of a “full consensus” document.19 The difficulties of specificity and audience raised in the first phase reemerged, stronger than ever, in the context of Web 2.0, mobile computing and user-generated-content. Furthermore, seeing WCAG 1.0 taken up as the basis for Section 508—and a host of sinternational legal accessibility standards—indicated that even these voluntary guidelines needed to be aware of a broader context for application and enforcement. Section 508, itself, was also subject to revision in this phase, with efforts beginning with the convention of a new committee in 2006 and extending through the eventual release of new standards in 2017. This second phase of standards development was marked by an emphasis on “harmonization,” which was enabled by a growing professional context. “Harmonization” refers to processes by which accessibility standards and guidelines in various industrial, national and international contexts are brought into agreement in order to facilitate their adoption across borders and industries. In the case of web accessibility, harmonization was an attempt to avoid the problems of earlier standards; according to Shadi Abou-Zahra, of the W3C International Program Office, adopting 246

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regulatory measures piecemeal led to fragmentation and hindered implementation of accessibility.20 Harmonization was supported by a growing professionalization of accessibility. While accessible web development began as a niche, voluntary practice, adopted by a range of developers with varied experience, it grew into a professional specialization in the early twenty-first century. Consultants, boutique firms, advocacy groups, corporate divisions, training modules, textbooks and other indications of professionalism emerged, promoting adherence to existing standards. This, in turn, resulted in a larger, more informed and more receptive audience, engaged in both the formation and uptake of standards. WCAG 2.0 attempted to directly address the problems of specificity and audience through a totally new, principle-based structure. The core principles of WCAG 2.0 are that content should be perceivable (able to be read or understood), operable (usable via a range of interfaces), usable (a concept similar to usability or user-friendliness) and robust (transformable, unbreakable); together, these are referred to as the POUR principles. This structure connected accessibility to popular digital media concepts such as personalization, usability and flexibility, potentially increasing its perceived relevance in web development fields.21 The POUR structure also enabled principles to be separated from technological specifics, which reside in frequently updated supplemental documents. Thus, “techniques” or “how-tos” are updated in accordance with technological changes, new capabilities and changing needs, while the principles remain static and provide a high-level theoretical understanding of accessibility. For instance, alternate text, or alt text, is a textual description of an image that conveys the image’s content to a user who cannot see it. In WCAG 1.0, alternate text was covered in Checkpoint 1.1, which read, in part, “Provide a text equivalent for every non-text element,” and was followed by specific examples of implementation.22 In WCAG 2.0, alternate text was Guideline 1.1, housed under the Perceivable principle. It stated, “Provide text alternatives for any non-text content so that it can be changed into other forms people need, such as large print, braille, speech, symbols or simpler language.”23 The 1.0 checkpoint emphasized the desired action, while the 2.0 principle emphasized the desired result and referred readers to supplementary documents for explicit instructions. The second structure explained the motivation of the guideline, without technical or instructional specificity, enabling it to be adapted over time and contexts. Furthermore, the POUR principles were friendlier to a growing audience and broader context for standardization. A participant in the WCAG process recalled that “there was a good sense that if we had something that was good and solid, it would likely be adopted and become a best practice in the industry,” but that accommodating the range of voices at the table was one of the hardest parts.24 In 2005, the working group adopted a consensus-based decision-making process, ensuring that these diverse voices were recognized and addressed. By removing technical specifics and operating via a consensus procedure, WCAG 2.0 grew into a flexible structure for accessibility that was widely targeted for harmonization. WCAG 2.0 has exerted significant productive power within a range of legal and professional contexts, while also being taken as the basis for accessibility laws in numerous contexts. WCAG 2.0 AA conformance was adopted by the European Commission as the goal for all EUROPA sites created after January 2010 and is referenced in Mandate 376, which calls for harmonization of European IT accessibility standards. Additionally, the laws of Australia, Canada and New Zealand directly reference WCAG 2.0, and in 2013, WCAG 2.0 became an ISO International Standard, ISO/IEC 40,500, allowing its use in the policies of countries that only use ISO standards. The expansive use of WCAG 2.0 is also evident in the creation of a draft document dedicated to applying it to non-web technologies.25 The Section 508 Refresh has also aimed for this kind of harmonization. The 2008 report from the Telecommunications and Electronic and Information Technologies Advisory Committee (TEITAC) recommended harmonization with a number of ISO standards, as well as WCAG 2.0, as “harmonization with international standards and guidelines where appropriate may also 247

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benefit agencies, service providers, manufacturers, and people with disabilities.” One TEITAC participant recalled that “people were overwhelmingly supportive of our interest and attempts at harmonizing with the WCAG version 2.0 accessibility standards, because they’re already referenced around the world and a lot of people are already familiar with them.”26 The final rule, released by the Access Board in March 2015, makes harmonization explicit. Rather than rewriting WCAG 2.0 into enforceable standards, as in the previous Section 508 standards, the new standards refer directly to WCAG 2.0 and require its success criteria to be applied to web content as well as any online documents and software.27 Standards harmonization is also important for the growing professional context of accessibility. For many in the IT and web-related industries, including major industry players such as Google, IBM or Apple, harmonized accessibility standards represent a financial savings and a reduction of liability risk. As one industry representative explained, “we want to have a standard to comply with and not have fractured version[s] of that standard in different localities that we have to support.”28 Ultimately, many accessibility experts foresee a harmonization process in which corporations’ internal policies, or “frankenstandards,”29 are aligned with WCAG 2.0 and upcoming federal standards. Broad agreement on harmonized standards facilitates the development of accessibility as a professional field, ensuring a consensus about what it means to “do” accessibility. As a result, many who work in accessible computing and web development support harmonization as a means of defining their work and ensuring quality. Currently, the International Association of Accessibility Professionals (IAAP) is taking the lead in defining accessibility as a profession. The IAAP has 31 founding members, including major technology firms, large banking corporations, advocacy groups, accessibility consulting firms and assistive technology providers, and has developed educational resources, put together events and overseen the development of certification programs. Like WCAG 2.0, the IAAP is invested in consensus and harmonization; Andrew Kirkpatrick, Group Product Manager of Accessibility at Adobe, stated (prior to the IAAP’s launch) that it was “important for us to try and do it well and that means including people, listening to different ideas and trying to achieve a consensus about the best approach.”30 Here, as in the standards themselves, the second phase of accessibility standardization is marked by an investment in harmonizing diverse voices and forming a flexible, agreed-upon understanding of accessibility as concept, practice and vocation.

Variety and Digital Media Accessibility Given the ascendancy of harmonized standards, it would appear that web content accessibility is more unified than ever; paradoxically, this has also made it more varied in its applications. Mobile media and video games are just two arenas in which these effects can be felt, as principles are picked up and reapplied, creating an ecosystem in which digital media accessibility can expand beyond explicitly standardized contexts. “Mobile media” is a term used to refer to text messaging, operating systems, web browsers, “apps” (applications) and other tools and services available on cellular telephones and similar devices (iPods, tablets, e-readers, etc.). The W3C’s first attempts to create standards for mobile media drew explicitly on WCAG 1.0: the Mobile Web Best Practices (MWBP) were “in part derived from the Web Content Accessibility Guidelines.”31 The Mobile Web Application Best Practices, released by the W3C in 2010, notes that “new interaction methods are likely to emerge in the future, particularly in the fields of voice and assistive technology.”32 This indicates that the design and development of mobile applications and hardware was indebted to the field of assistive technology, and thus to the tradition of accessible computer and Internet development. Mobile media is also newly subject to the Twenty-First Century Communication and 248

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Video Accessibility Act (CVAA, 2010), which required smartphones and other advanced communication services to be compatible with hearing aids and to allow web access for visually impaired users, as part of requiring general accessibility to people with disabilities. The revisions to Section 508, and its harmonization with WCAG 2.0, occurred in concert with the process of developing standards for the enforcement of CVAA, the overhaul of standards for Section 255 of the Telecommunications Act of 1996 and the development of standards by the Department of Justice for the application of the ADA to the Internet.33 Released as a final rule in January 2017, compliance to the 508-related standards will be required beginning in 2018; 255 related standards are pending adoption by the Federal Communications Commission. A second case of the expansion of digital media accessibility is seen in video games. Not subject to any standards, video games nonetheless may offer accessibility features such as captioning, simplified or alternative input devices or voice-input, among others. One of the leading sources for information and advocacy related to game accessibility is the AbleGamers Foundation. It hosts an online community for gamers with disabilities, including a website, Twitter usage and regular accessibility reviews of major game releases. In 2012, AbleGamers launched the “Includification” project, a set of voluntary standards for accessible video game development that were produced with the participation of several major video game companies. Much like WCAG 2.0, it “does not explain the technical ways to design a video game. Instead, it explains the most important accessibility options that can be included into a video game and what each one of them means to the end-user,”34 focusing on principles rather than technical specifics. Though Includification incorporates elements of WCAG 2.0, it does not reference it directly, and is not part of a broader harmonization effort. However, this is a case in which regulation of accessibility in one arena has led to partial incorporation of those discourses in a different field. Mobile media and video games demonstrate a progression from limited web accessibility standards to a robust infrastructure for digital media accessibility. The principle-based structure of WCAG 2.0, efforts at wide-scale harmonization and a growing professional community enable the lessons and practices of web accessibility to be broadly applied in a variety of technological, institutional and social contexts. Furthermore, it appears that this growth increasingly recognizes people with disabilities as both users and producers of content, interested in information, communication and entertainment uses of digital media. Where earlier standards presumed a limited audience of developers producing digital media for an audience of people with disabilities, flexible standards for diverse audiences enable people with disabilities to become authorities on accessibility and act as producers. For instance, disabled blogger Glenda Watson Hyatt has translated the POUR framework into a set of materials that explicitly explain accessibility measures and practices to people using commercial blogging software.35 Similarly, users of the Tumblr site F*ck Yeah, Accessibility share tips and tricks to address the shortcomings of Tumblr’s code and make content more accessible to a wide audience, with many users with disabilities teaching one another about accessibility and its practices in an informal and interest-driven context. Users with disabilities blend consumption and production, creating new kinds of accessibility and enabling others to do the same.

Conclusion This chapter has offered a brief sketch of the history of digital media accessibility in the United States, and the ways in which tensions regarding specificity and audience have been addressed through harmonization and professionalization. As a result, these standards have become an infrastructure that is the basis for a variety of applications, reaching new forms of digital media accessibility and connecting with broader audiences, including users with disabilities. Digital media accessibility is many things to many people. It is access to a range of tools, 249

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services, information, interaction and entertainment via hardware and software. It is a professional practice and a legal standard. It is also a deeply personal experience, forged in the specific material, sociocultural and embodied contexts of individual users. As a kind of infrastructure, digital media accessibility standards are an “overt point of contact and access between us all,”36 producing particular, intersectional articulations of bodies, technologies and societies. As infrastructure, digital media accessibility creates possibilities for action and inaction, inclusion and exclusion; it mediates variable articulations of users, technologies, policies and activities. This understanding of accessibility works in concert with a relational conception of disability and access, in which these phenomena are neither located within the individual nor within society (as in the social model of disability), but are produced in their intersections. Disability studies scholar Alison Kafer proposes a “political-relational model” of disability;37 unlike the social model, which locates disability in a simplified social context, this model sees disability emerging from the interactions of embodied experiences of pain, social and physical barriers and experiences of inequality. Canadian disability scholar Tanya Titchkosky similarly argues that access is relational, emerging in the nexus of bodies, artifacts, social norms, ideologies and other rich contexts.38 Access is not a single state, but a complex and varied relationship. Accordingly, it seems that accessibility is a relational phenomenon, intervening in relations of access and ability in order to produce new relations and new possibilities. Increasingly, harmonized accessibility standards supported by professional practices and expanding into a variety of digital media contexts represent an infrastructure for digital media accessibility. Insofar as this infrastructure that allows for flexible relations between individuals, technologies and desired uses, it may provide the conditions of possibility for people with disabilities to enter into a range of desired, active and self-directed relationships with digital media. In doing so, digital media accessibility acts as a positive force for increasing digital media access and ameliorating the inequalities of disability.

Notes 1 Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media, Critical Media Studies (Lanham, MD: Rowman & Littlefield, 2003), 3. 2 Michael Oliver, Social Work with Disabled People, 1st ed. (Basingstoke, UK: Palgrave Macmillan, 1983). 3 Mara Mills, “Deafening: Noise and the Engineering Communication in the Telephone System,” Grey Room 43 (2011): 118–143; Ingunn Moser, “Disability and the Promises of Technology: Technology, Subjectivity and Embodiment within an Order of the Normal,” Information, Communication & Society 9, no. 3 (2006): 373–395; Graham Pullin, Design Meets Disability (Cambridge, MA: MIT Press, 2009). 4 Lawrence Busch, Standards: Recipes for Reality (Cambridge, MA: MIT Press, 2011), 13. 5 Keller Easterling, Extrastatecraft: The Power of Infrastructure Space (London: Verso, 2014). 6 Busch, Standards, 33. 7 “World Wide Web Consortium (W3C) Launches International Web Accessibility Initiative,” World Wide Web Consortium, April 7, 1997, www.w3.org/Press/WAI-Launch.html. 8 The Section 508 Standards are named in reference to Section 508 of the Rehabilitation Act of 1973, a US law that has been amended several times and that was a watershed moment in legally ensuring disability rights prior to the Americans with Disabilities Act (1990). 9 Elizabeth R. Petrick, Making Computers Accessible: Disability Rights and Digital Technology, 1st edition (Baltimore, MD: Johns Hopkins University Press, 2015), 3. 10 Elizabeth Ellcessor, “Bridging Disability Divides,” Information, Communication & Society 13, no. 3 (April 2010): 289–308. 11 Gregg C. Vanderheiden, interview by Elizabeth Ellcessor, December 10, 2008. 12 Participant 4, interview by Elizabeth Ellcessor, May 17, 2011. 13 Alison Adam and David Kreps, “Disability and Discourses of Web Accessibility,” Information, Communication & Society 12, no. 7 (October 2009): 1041–1058; Jonathan Lazar, Alfreda Dudley-Sponaugle and KishaDawn Greenidge, “Improving Web Accessibility: A Study of Webmaster Perceptions,” Computers in Human Behavior 20, no. 2 (March 2004): 269–288. 14 47 USC Sec. 255, 1996.

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15 29 USC Sec. 794d (a)(1)(A)(i) and (a)(1)(A)(ii), 1998. 16 Doug Wakefield, interview by Elizabeth Ellcessor, December 8, 2008. 17 Doug Wakefield, interview by Norman Coombs, December 21, 2000, transcript, http://easi.cc/media/ trans/tn508wld.htm. 18 Jim Ellison, “Assessing the Accessibility of Fifty United States Government Web Pages,” First Monday 9, no. 7 (2004), www.firstmonday.org/issues/issue9_7/ellison/index.html; Paul T. Jaeger, “User-Centered Policy Evaluations of Section 508 of the Rehabilitation Act: Evaluating E-Government Web Sites for Accessibility for Persons With Disabilities,” Journal of Disability Policy Studies 19, no. 1 (June 2008): 24–33; Jonathan Lazar and Kisha-Dawn Greenidge, “One Year Older, But Not Necessarily Wiser: An Evaluation of Homepage Accessibility Problems over Time,” Universal Access in the Information Society 4, no. 4 (2006): 285–291. 19 Elizabeth Ellcessor, Restricted Access: Media, Disability, and the Politics of Participation (New York: New York University Press, 2016); David Kreps and Mhorag Goff, “Code in Action: Closing the Black Box of WCAG 2.0, A Latourian Reading of Web Accessibility,” First Monday 20, no. 9 (September 10, 2015), http://firstmonday.org/ojs/index.php/fm/article/view/6166. 20 Shadi Abou-Zahra, interview by Elizabeth Ellcessor, April 15, 2013. 21 Elizabeth Ellcessor, “: Web Accessibility Myths as Negotiated Industrial Lore,” Critical Studies in Media Communication 31, no. 5 (May 2014): 1–16. 22 Wendy Chisholm, Gregg Vanderheiden and Ian Jacobs, “Web Content Accessibility Guidelines 1.0,” Interactions 8, no. 4 (July 2001): 35–54. 23 Ben Caldwell, Michael Cooper, Loretta Guarino Reid and Gregg Vanderheiden, eds., “Web Content Accessibility Guidelines (WCAG) 2.0,” World Wide Web Consortium, December 11, 2008, www.w3. org/TR/WCAG20. 24 Participant 4, interview. 25 Michael Cooper, Peter Korn, Andi Snow-Weaver and Gregg Vanderheiden, eds., “Guidance on Applying WCAG 2.0 to Non-Web Information and Communications Technologies (WCAG2ICT),” World Wide Web Consortium, September 5, 2013, www.w3c.org/TR/wcag2ict. 26 Participant 8, interview by Elizabeth Ellcessor, October 19, 2011. 27 Architectural and Transportation Barriers Compliance Board, “Proposed Information and Communication Technology (ICT) Standards and Guidelines,” Federal Register no. 80 FR 10,880 (February 27, 2015), https://federalregister.gov/a/E6-5761. 28 Participant 13, interview by Elizabeth Ellcessor, May 11, 2011. 29 Elle Waters, interview by Elizabeth Ellcessor, November 5, 2012. Waters is an accessibility expert who has worked in a variety of corporate and consulting contexts. 30 Andrew Kirkpatrick, interview by Elizabeth Ellcessor, March 1, 2013. 31 Jo Rabin and Charles McCathieNevile, “Mobile Web Best Practices 1.0,” World Wide Web Consortium, July 29, 2008, www.w3.org/TR/mobile-bp. 32 Adam Connors and Bryan Sullivan, eds., “Mobile Web Application Best Practices: W3C Recommendation,” World Wide Web Consortium, December 14, 2010, www.w3.org/TR/mwabp. 33 Architectural and Transportation Barriers Compliance Board, “Information and Communication Technology (ICT) Standards and Guidelines,” Federal Register, no 82 FR 5790 (January 18, 2017), www.federalregis ter.gov/documents/2017/01/18/2017-00395/information-and-communication-technology-ict-standardsand-guidelines. 34 Mark C. Barlet and Steve D. Spohn, Includification: A Practical Guide to Game Accessibility (Charles Town, WV: AbleGamers Foundation, 2012), 3. 35 Glenda Watson Hyatt, “Accessibility Checklist for Blog Posts,” Blog Accessibility, November 12, 2010, http://blogaccessibility.com/accessibility-checklist-for-blog-posts. 36 Easterling, Extrastatecraft, 11. 37 Alison Kafer, Feminist, Queer, Crip, 1st ed. (Bloomington: Indiana University Press, 2013). 38 Tanya Titchkosky, The Question of Access: Disability, Space, Meaning (Toronto: University of Toronto Press, 2011).

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23 MAKING THE WEB MORE INTERACTIVE AND ACCESSIBLE FOR BLIND PEOPLE Jonathan Lazar and Brian Wentz

Introduction It is estimated that 15 percent of the world population (over 1 billion people) have some form of disability.1 With regards to vision, 188.5 million people globally are estimated to have mild vision impairment, 216.6 million to have moderate to severe vision impairment, and 36 million people are estimated to be blind.2 Within the United States, the adult disability community numbers 61.4 million, with vision impairment representing approximately 4.6 percent of adults with disabilities.3 Accessibility refers to the technical ability required for an individual with a disability to access technology. Many researchers and users would also point out that truly equal access doesn’t only mean technical access, it also means equivalent ease of use (usability). So, a task that would take visual people 3 minutes to complete, shouldn’t take blind people 30 minutes to complete. Even if it is technically accessible, the access should also be equivalent. Many people with disabilities use assistive technologies (alternate forms of input and output), to access websites, applications, operating systems and other media, which must be built to be flexible enough to work with the various assistive technologies. Many of the accessibility improvements that increase access for blind users extend to other disabilities as well. However, the focus of this chapter is on accessibility for blind individuals. A majority of blind users utilize a screen reader to access the Web, which takes the content that appears on the computer screen, and provides computer-synthesized speech output, typically in a linear manner that is based on the HTML design of the website. Some blind users also utilize refreshable Braille, but since Braille literacy is low and refreshable Braille displays are expensive, this option is used less often than screen readers. Technical guidelines for accessibility (for example, the Web Content Accessibility Guidelines) are now well established, and there are a variety of informational resources on accessible design that are available to web developers, which clearly explain how to make websites accessible to people with disabilities. Screen readers (software that reads the visual content of a software interface or web page audibly to a user) are a primary type of assistive technology utilized by users who are blind or have low vision. However, a long-standing challenge and sometimes barrier to this same assistive technology is the financial cost involved with purchasing and maintaining the support or updates to

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that technology. For example, a blind user wishing to use one of the most common screenreader applications (JAWS) needed to invest approximately USD 900–1,100 in that technology on top of the purchase price of a laptop or desktop computer with which to use it. Apple changed the dynamics of this quandary with the introduction of its screen reader (VoiceOver) in 2005, which comes pre-installed on all Apple desktops, laptops, tablets and mobile devices, at no extra cost. Android mobile devices (4.3 and newer platform) have followed suit with an embedded screen reader as well (Talkback). Microsoft has partnered with Ai Squared to provide the Window-Eyes screen reader free of charge to users of its Office 2010 and newer software, however that requires a purchase of Microsoft Office. It has been hinted that the cost for JAWS to home users will drop, but there is not yet evidence of that. Other products, including the opensource, free NVDA screen reader from NV Access are now providing other no-cost options to blind users. However, screen readers are only useful if they interact with websites, software applications, operating systems and media that are designed to be accessible. A screen reader by itself is not useful without the digital content and apps that users want to access.

Background on Information Technology Accessibility Laws and regulatory standards that mandate technology accessibility for governments can vary significantly worldwide. However, the laws and regulatory standards across countries generally have one thing in common: the core technical standards. The core technical standard used across the world is the Web Content Accessibility Guidelines (WCAG) 2.0, which are published by the World Wide Web Consortium (W3C) as part of the Web Accessibility Initiative (WAI). The WCAG content areas (perceivable, operable, understandable and robust) each contain more detailed standards with three levels of compliance that are designed to provide an increased level of accessibility.4 Using a set of standards called WCAG2ICT, the WCAG standards can also be applied to non-web technologies, such as applications, operating systems, mobile devices and other media. While other technical standards exist from WAI for specific areas, for example for browsers (User Agent Accessibility Guidelines) and web developer tools (Authoring Tool Accessibility Guidelines), none are as widely used or accepted around the world as the WCAG.5 Statutory laws in countries around the world generally fall into one of two categories of coverage: either they require only that web and other digital content provided by the government be accessible, or they require that companies and other entities that are considered “public accommodations” make their digital content accessible as well. For instance, in the United States, Section 508 of the Rehabilitation Act of 1973 currently serves as the primary guideline for technology developed, procured, maintained or used by the US federal government, and it has been enforceable since 2001. It outlines the accessibility standards for government websites and technology, and the final rule was issued in January 2017 for the new version, based on the Web Content Accessibility Guidelines 2.0.6 For public accommodations (such as stores, hotels and movie theaters) that are covered under the Americans with Disabilities Act (ADA), the US Department of Justice (DOJ) has said for nearly 20 years that these entities must provide accessible websites for people with disabilities.7 Under the ADA employers must also provide “reasonable accommodation” to employees with disabilities, which includes access to computer systems and other technology.8 In 2010, the DOJ began a process to develop detailed regulatory requirements for websites of private companies that are considered public accommodations under the ADA and therefore must be accessible for people with disabilities, but as of December 26, 2017 the DOJ withdrew from the process saying they would evaluate whether “promulgating regulations about the accessibility of Web information and services is necessary and appropriate.”9 On September 25, 2018, in a letter responding to questions from Congress, the DOJ reiterated that the ADA requires the accessibility of 253

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websites of public accommodations. The DOJ letter also noted that this has been their consistent policy for over 20 years, and “the absence of a specific regulation does not serve as a basis for noncompliance with a statute’s requirements.”10 On January 15, 2019, the US Ninth Circuit Court of Appeals reversed a lower court ruling, establishing yet again that the Americans with Disabilities Act addresses websites of public accommodations, even in the absence of specific technical guidance or regulations on what interface accessibility standards to use.11 The TwentyFirst Century Communications and Video Accessibility Act of 2010 further attempts to legally require access to Internet communication devices and video for people with disabilities.12 In the United Kingdom, the Equality Act 2010 applies to both the public and private sector. It was enacted to strengthen the previous Disability Discrimination Act, and is proactive, in that an organization can no longer wait until a person with a disability attempts to use a service to comply with the law, but there must be a proactive attempt to determine in advance and on a regular basis what should be done to provide accessibility.13 For websites, the current law allows conformance to either WCAG 1.0 or WCAG 2.0. Other countries, such as Australia, also utilize the WCAG; there is a mandatory requirement that all Australian government websites must meet WCAG 2.0 level AA.14 It is important to note that in common law countries (including the United States, United Kingdom, Australia, Canada, New Zealand and others), court rulings establish judicial precedents that create enforceable law. So, in common law countries, cases such as the National Federation of the Blind v. Target (2006 in the United States), Maguire v. Sydney Organising Committee for the Olympic Games (2000 in Australia) and Jodhan v. Canada (2011 in Canada),15 impact the legal requirements for digital media accessibility. In civil law countries (also known as codified law), such as France, Germany and Italy, the case law is considered non-equivalent and non-binding compared to the statutory law and codification of law, so court cases in civil law countries have much less of an impact on legal requirements for digital accessibility. There are multiple initiatives around the world to improve accessibility to digital media. A well-known human rights treaty, the UN Convention on the Rights of Persons with Disabilities (CRPD), has two articles, 9 and 21, which relate specifically to digital accessibility. Article 9 specifies equal access to “information and communications technologies and systems” and Article 21 specifies both “providing information intended for the general public to persons with disabilities in accessible formats and technologies” and “encouraging the mass media, including providers of information through the Internet, to make their services accessible to persons with disabilities.”16 The CRPD has especially had an impact on the rights of children with disabilities.17 Within the developed world, initiatives such as the European Union Mandate 376 attempt to require technology procurements by governments in the European Union (EU) to be accessible,18 and individual countries in the EU have also enacted specific local legislation related to accessibility. Within the developing world, there are efforts, by both governments and disabled persons organizations (DPOs) to address digital accessibility during the formation of technological infrastructures, before inaccessible (and needless barriers) are put into place.19 These efforts have born some fruit, including the “Accessible India” campaign and progress in making banking and libraries more accessible for blind people in India.20

Areas of Web Media Where Inaccessibility Has an Exclusionary Impact People who are blind or low vision need to have a key set of media competencies.21 These include the ability to read braille and utilize assistive technologies, such as screen readers. However, having the appropriate media competencies isn’t enough to succeed in the use of information and communications technology. Websites, intranets, operating systems, media and applications need to be flexible enough to work properly with assistive technologies such as screen readers and refreshable 254

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braille displays. When web-based media is inaccessible for blind users, it can lead to multiple forms of exclusion and discrimination. These are real impacts, and we describe them in the context of commerce, employment, education, communication and entertainment.

Commerce Many commerce transactions are now facilitated through the Web. This includes all types of commerce, including sites where products are sold by businesses (typical e-commerce), products are sold from consumer to consumer (for example, eBay and Etsy), sharing and crowdsourcing sites (for example, Mechanical Turk and Craigslist) and other sites and apps that power businesses such as the apps for Uber and Lyft. When websites are inaccessible for blind users, it removes blind people from opportunities to participate in commerce. It also leads to fewer overall choices for products and services, and it can lead to fewer opportunities for economic self-sufficiency. Inaccessible websites often result in forms of pricing discrimination for blind users. When inaccessible e-commerce sites have “web-only” sales that are not available in the brick-andmortar stores, there is the potential for pricing discrimination. Transportation websites have been especially problematic. For instance, when airline websites are inaccessible, airlines may suggest that blind users instead call the airline call centers. However, airlines typically offer their lowest fares on their websites and may quote blind users higher fares over the phone, even when that is against the law. For instance, in a series of research studies, Lazar et al.22 documented that when websites are inaccessible, airlines often charge blind users higher prices, as much as a third of the time. For similar reasons, the US Department of Justice announced a legal settlement in May 2011 with Megabus, which previously was only offering their lowest one dollar fares on their inaccessible website, and was not offering those fares on the phone.23 Ironically, the legal and social rationale for accessible commerce transactions on the Web is not the only reason for promoting accessibility in this venue. Rich Donovan’s research estimates a global figure of 1.3 billion people with disabilities with USD 1.2 trillion in disposable income. This increases to USD 8 trillion when the USD 6.9 trillion of disposable income of their friends and family is included.24 A US-wide study using 2014 American Community Survey (ACS) data estimated: The total after-tax disposable income for working-age people with disabilities is about [USD] 490 billion which is similar to that of other significant market segments, such as African Americans ([USD] 501 billion) and Hispanics ([USD] 582 billion); discretionary income for working-age people with disabilities is about [USD] 21 billion, which is greater than that of the African-American and Hispanic market segments combined.25

Employment According to data from the United Nations, countries forego up to 7 percent of their GDP because of the exclusion of people with disabilities from the workforce.26 There is a high level of unemployment among people with disabilities, so the job hiring and application process is very important in terms of accessibility. The US employment rate for people without disabilities is approximately 65.7 percent, while it is approximately 18.7 percent for people with disabilities.27 The employment rates for people with disabilities in other countries are also low—for example, in the United Kingdom the rate is estimated at 33 percent28 and at about 38 percent in Canada.29 Inaccessible web media relates to unemployment in two ways: the hiring process and the actual employment. Most employers now post job advertisements and applications on the Web.30 Job postings may be on a company’s own website, and the application process may use a software platform, 255

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such as the one provided by Taleo. Other companies and organizations may simply utilize a well-known website, such as monster.com, or indeed.com, for managing the hiring process. It has been well documented that many online employment applications are inaccessible,31 and this leads to many potential problems. If a blind user cannot even apply for a job online due to an inaccessible job application, then it already separates out the blind person and employers may perceive them to be incapable, because they cannot even apply for the job without an accommodation. It is important to note that disability rights laws, such as the Americans with Disabilities Act in the United States, do not allow employers to ask about disability status during a job application process, so it is legally problematic that an inaccessible job application website can force blind individuals to reveal their blindness. Once people are hired and employed, inaccessible websites can pose another barrier in the employment itself. Imagine a situation where an employee is blind, and has been an employee for a long time, doing an excellent job. Then, a new software package is implemented and it is inaccessible, so the employee is no longer able to do their job and is either cut from their employment or assigned to a less desirable job. The disability clearly isn’t stopping the employee from doing their job—the software or application is stopping the employee. This isn’t a hypothetical example; this is an actual case from the US Federal Court System.32 Often, in employment of people with disabilities, the attention is placed on the hiring process, however, once employed, inaccessible websites and applications can be barriers to continued employment. The term “reasonable accommodation” is often used to determine what types of modifications are appropriate in workplace technology.33 However, the previous example shows that the accommodations are often not needed due to the disability, but are caused by the procurement and/or use of inaccessible technologies. Further, according to a survey of US employers, a high percentage (59 percent) of workplace accommodations cost nothing to make, while the rest have a typical cost of USD 500.34

Education Some of the barriers to employment are related to the application process, inaccessible technology or simply discrimination. However, educational preparation plays a significant role and it is known that 16.4 percent of people with disabilities aged 25 and older have a bachelor’s degree or higher, compared to 34.6 percent of people without disabilities.35 The domain of education is one that holds tremendous potential and promise for learners with disabilities; however, it has also frequently been at the forefront of conflict between access and discrimination. The use of online technology as a companion for face-to-face education, or a distance education venue of its own, provides the technical potential of more equitable educational opportunities than might be available in a traditional, face-to-face environment. The evolution of e-book and e-reader technology also presents a vital opportunity for faster, more flexible and more equitable access to textbooks and other learning resources. Again, however, both of these technologies that are inherently accessible have been awash in serial instances of exclusion for people with disabilities. Most of the research literature, case studies and legal enforcement related to IT accessibility in education, have occurred in the area of higher education. Very little has appeared in the area of primary and secondary (K–12) education. There has only been one legal case in the United States, addressing the issue of accessible IT in the K–12 environment, Nightingale vs. Seattle Public Schools. A blind parent of children in the Seattle Public Schools sued the school district because she was unable to access the resources to monitor her children’s progress. While the website was originally accessible, changes made to the website in 2012 rendered it inaccessible for her to access information about her children. The Seattle Public Schools entered into a consent decree in September 2015 before the case went to trial.36 While US federal laws often are clear about 256

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the requirements for accessible digital media in the K–12 environments, the state-level educational technology plans and accessibility statutes often are vague about the requirements for accessibility and how they should be met within the K–12 environment.37 The lack of progress in the area of primary and secondary education is surprising, given that children and young adults with disabilities are often the early adopters, utilizing technology earlier than many of their peers.38 In the United States, federal legislation requires that college and university programs and services must be accessible to qualified individuals, in particular when federal aid and financial resources are in any way used by the college or university. For example, Section 504 of the Rehabilitation Act of 1973 mandates inclusion for people with disabilities by institutions that receive federal funds. In addition, the Americans with Disabilities Act (ADA) of 1990 extends to public programs and services, regardless of whether or not these programs and services are federally funded. The friction between the use of emerging technology in education, and legislative policy and legal rulings that demand inclusion and accessibility, is technically unnecessary, however it is a current reality. The 2010 US Department of Justice settlement regarding the ADA and e-readers at Arizona State University highlighted this reality, noting that “it is a core priority of the Civil Rights Division to strengthen and expand the educational opportunities for individuals with disabilities.”39 A positive area of change has been that of the primary websites for universities, some of which have made significant strides in their accessibility over the past ten years40 and some that have been encouraged through litigation to make similar strides.41 This is, of course, an ongoing challenge, illustrated by the recent litigation filed against 50 universities in the United States.42 The challenge with universities and other educational institutions and providers is that a primary website is only one of a plethora of web-based resources that comprise the average educational experience, both face-to-face and during online learning/instruction. Third-party web-based resources, including learning management systems, textbook companion resources, virtual lab resources, scheduling systems, library resources and mobile apps, are all used in various aspects of education. Unfortunately, research continues to illustrate examples of these ancillary components being far from accessible for students with disabilities.43 Studies have further illustrated that the social media tools, which are often used for online courses to provide a missing aspect of context present in face-to-face courses, also have accessibility problems.44 Some of those resources, including a dominant learning management system provider (Blackboard), have made progress towards being accessible.45 A practical benefit from this technology, when accessible, is that online resources can increase inclusion for students who are unable to attend class as well as for students with other print impairments.46 Other universities have created inclusive or accessible technology initiatives across their campuses and highlight resources on their websites that are focused on accessibility or how to make course content accessible. Out of this discussion follows a separate issue from the technology itself—the design of courses within educational institutions. It has been documented that many online courses simply are not designed in an accessible manner, regardless of the technology.47 With the increasing use and participation in online education within educational institutions,48 there must be a renewed focus on ensuring that all aspects of learning are accessible, so that the increasing availability of educational degrees, training and learning opportunities are inclusive throughout the current and emerging educational arena. A renewed focus on inclusive design, government mandates regarding technology accessibility and emerging technology (such as WAI-ARIA discussed later), all hold the promise of a more inclusive future for education.

Communication and Social Media The usage of social networking websites such as Facebook, Twitter and LinkedIn holds ongoing importance in communication, collaboration and professional networking. Social networking 257

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applications can be used for communicating, collaborating and strengthening professional relationships. Even when not used for professional purposes, social networking is an important part of socialization. When social networking sites are inaccessible to blind users, this can cut them out of not only professional communication, but also social communication. More then 15 years ago, researchers such as Preece were documenting how people with chronic health issues and disabilities could turn to online communities, which were earlier forms of what we now refer to as social media.49 However, you can only turn to these social networks online if they are accessible. Previous research has documented problems with the accessibility of social networking sites. For instance, when a social media website had accessibility problems, the company suggested that screen-reader users who were blind, should instead utilize the mobile version of their site, which was more accessible, but had much more limited functionality.50 A 2013 survey documented high rates of social networking usage by blind users, potentially higher than the general population of users, with Facebook and Twitter being the most popular.51 While Twitter was once considered to be the most popular social networking service among blind users (due to its focus on text), as it is increasingly used primarily for images, it’s no longer as popular among blind users.52 It is essential that other common forms of communication (both in the workplace and for personal use) are accessible for people with disabilities. Social media plays a dominant role in personal and some workplace communication, however email has continued for decades to maintain a critical role for workplace communication and many other types of communication that require a more formal communications venue. There are certainly still personal computer software applications such as Microsoft Outlook that are used for email purposes, but most email users rely on mobile phone applications and web-based email solutions for their email communications purposes. It is estimated that traditional desktop email applications now only account for less than a quarter of all email usage, with email via mobile devices now accounting for more than half of all emails that are accessed.53 This trend should emphasize the importance of web-based and mobile email accessibility. Prior research indicates an ongoing need for email accessibility,54 and this is particularly essential given the rapid pace of updates and revisions on mobile apps and web-based applications.

Entertainment Often, entertainment is considered to be less important than the areas discussed earlier in this chapter, such as commerce, employment and education, which are keys to economic success and independence. However, to think that entertainment is less important for someone with a disability is wrong for at least two reasons (and probably many more). First, entertainment is often a core component of socialization. When people get together, they watch movies, play video games, use digital-based exercise applications (for example Wii tennis and bowling) and engage in these and other digital media-based activities. To not allow blind people to have access to these forms of entertainment is to exclude blind people from socialization activities. Furthermore, in later sections, we will discuss how many of these forms of entertainment can be accessible for blind people. Second, entertainment-style digital media is now often used in the areas of education and employment.55 Games, simulation and entertainment are used to teach basic skills in math and science, sometimes known as serious games.56 However, educational games have often been reported to have very low accessibility, especially for blind students.57 Digital simulations are utilized in the job application process, to determine skill level and for evaluation of potential job candidates. Once someone is employed, simulations and virtual reality can be utilized for training on specific skills. When someone is excluded from the ability to use digital media such as gaming and simulations, it really can have an impact on employment and education.

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There are many approaches to make entertainment and digital media accessible for blind users. Often, when people say that, “it can’t be done,” it is because they are not aware of the alreadyexisting solutions. For instance, in the area of gaming, there are many existing research studies, documenting how to make common video games accessible for blind users, including modified versions of well-known entertainment and games such as Guitar Hero, Rock Band, Wii Bowling and Dance Dance Revolution.58 More recently, Microsoft has promoted its new adaptive gaming controller, illustrating a growing awareness of the need to become inclusive in gaming design. Video games and similar digital entertainment can also be made accessible for blind users. In terms of movies, video description of movies and television can be helpful in ensuring equal access to digital media for blind users. The Federal Communications Commission provides a very basic definition of video description: “Video description is audio-narrated descriptions of a television program’s key visual elements. These descriptions are inserted into natural pauses in the program’s dialogue. Video description makes television programming more accessible to individuals who are blind or visually impaired.”59 Video description is a newer technological solution, in comparison to captioning for the Deaf and hard of hearing, which has existed for decades. However, both video description and captioning services are easily available from multiple companies. As an example of how captioning is well established, while video description is not yet as well established, in the United States, the legal requirements for video description are that television stations in major markets must have 50 hours per calendar quarter, of programming with video description.60 Compare those minimal requirements for video description, with requirements that nearly all programming from broadcast stations and cable operators must have captioning for the Deaf and hard of hearing.61 Unfortunately, the legal protections for video gaming are even more absent. In the only legal case in the United States examining whether people with disabilities have a legal right to video games,62 a court ruled that video games do not count as a public accommodation under the Americans with Disabilities Act.63

Emerging Technology That Could Have a Positive Impact HTML5 is the latest version of HTML ratified by the W3C (in 2014), and it has seen rapid adoption in the last few years. HTML5 attempts to bring better accessibility to the HTML markup language through improvements such as a more navigable and clear document structure and better form access. Inadequate form labeling and accessibility have long been a common challenge for users who are blind. Accessible video interaction without a third-party plug-in is one of the clear gains in accessibility as a result of HTML5.64 As a response to the type of dynamic web content and interface controls that are currently employed by many websites, the W3C through its Web Accessibility Initiative, released a new set of technical standards and attributes called WAI-ARIA (Web Accessibility Initiative—Accessible Rich Internet Applications). These standards work along with newer standards such as HTML5 to increase the accessibility of websites and applications through markup that applies specifically to assistive technologies such as screen readers. All modern browsers typically support the most common features of both HTML5 and WAI-ARIA. WAI-ARIA adds features such as landmark navigation, improved support for JavaScript and AJAX widgets, enhancements to web-based forms and access to “live regions.” One of the accessibility challenges presented by dynamic, “Web 2.0” content, is the type of content updates that are automatically received on web pages and web-based applications. Examples include email messages received while working on a page, stock updates received and emergency notifications received or updated. Live regions were included with WAI-ARIA to address dynamically updated technology for assistive technology.

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As desktop, laptop and mobile technologies have introduced new types of interaction and user interfaces, one of the most notable changes has been the transition to touch-based and gesturedriven computing. An obvious concern with this transition was the potential loss of significant accessibility gains on prior input devices, by moving towards a type of input that would traditionally be categorized as visual. While there have been some challenges that can probably be attributed to designers and manufacturers (for example, Amazon and Google), through early innovation from companies such as Apple, the touch-based computing era has not only improved in its own accessibility but also in the broader dimension of an accessible user experience that it has been able to now offer many users with disabilities. Most early mobile devices (smartphones) were not very accessible, particularly for those who are blind or low vision and the few accessible models were offered at considerable cost to the user. Advocacy and attention to more inclusive design have now resulted in a variety of mobile devices that can be used by those who are blind or low vision, at a much lower cost. For example, as noted previously, both Apple and Android mobile devices today have embedded screen-reader and accessibility features. Touch-based interfaces that work with a screen reader now allow those users to experience more than a simple linear dimension of interface content. This, combined with the significant strides that have been made in speech to text applications, creates a growing world of mobile technology that holds a promise of increasing accessibility.

Conclusion Digital media is in many ways representative of the ever-evolving social changes that impact our society. The increasing variety of digital forms of media provide new and fascinating opportunities for communication, work, education and recreation. Unfortunately, it is well documented that many of these exciting advances in media either exclude or provide limited access to individuals with disabilities, especially blind users. Sometimes many years go by before a media product begins to become accessible for people with disabilities. While it might be assumed that the nature of technology is to blame, many studies have illustrated that it is rarely the technology but rather the hasty design or poor implementation of that technology which creates this disparity. Product developments such as the embedded screen reader on newer mobile phones, highlight the underlying promise and potential that can easily exist through inclusive design and implementation.

Notes 1 World Health Organization (WHO), “Disability and Health,” January 16, 2018, www.who.int/mediacen tre/factsheets/fs352/en. 2 Rupert R. A. Bourne et al., “Magnitude, Temporal Trends, and Projections of the Global Prevalence of Blindness and Distance and Near Vision Impairment: A Systematic Review and Meta-Analysis,” Lancet Global Health 5, no. 9 (2017): e888, quoted in WHO, “Blindness and Vision Impairment: Fact Sheet,” October 11, 2018, www.who.int/en/news-room/fact-sheets/detail/blindness-and-visualimpairment 3 Catherine A. Okoro, NaTasha D. Hollis, Alissa C. Cyrus and Shannon Griffin-Blake, “Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults: United States, 2016,” Morbidity and Mortality Weekly Report (MMWR) 67, no. 32 (August 17, 2018): 882–887, www.cdc.gov/mmwr/ volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w#suggestedcitation. 4 Ben Caldwell, Michael Cooper, Loretta Guarino Reid and Gregg Vanderheiden, eds., “Web Content Accessibility Guidelines (WCAG) 2.0,” World Wide Web Consortium, December 11, 2008, www.w3. org/TR/WCAG20. 5 Jonathan Lazar, Daniel Goldstein and Anne Taylor, Ensuring Digital Accessibility Through Process and Policy (Amsterdam: Morgan Kaufmann/Elsevier, 2015), 81.

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Web Accessibility for Blind People 6 “Information and Communication Technology (ICT) Final Standards and Guidelines,” January 18, 2017, www.access-board.gov/guidelines-and-standards/communications-and-it/about-the-ict-refresh/final-rule. 7 Lazar et al., Ensuring Digital Accessibility, 64. 8 Jon R. Gunderson, “American with Disabilities Act (ADA): Human Computer Interaction for Persons with Disabilities,” in Conference Companion on Human Factors in Computing Systems (Boston, MA: ACM, 1994), 381–382. 9 Department of Justice, “Nondiscrimination on the Basis of Disability: Notice of Withdrawal of Four Previously Announced Rulemaking Actions,” Federal Register 82, no. 246 (December 26, 2017), www.gpo.gov/ fdsys/pkg/FR-2017-12-26/pdf/2017-27510.pdf. 10 Stephen E. Boyd to the Honourable Ted Budd, letter, September 25, 2018, www.adatitleiii.com/wp-con tent/uploads/sites/121/2018/10/DOJ-letter-to-congress.pdf. 11 For more information or to get the actual court ruling documents see “Big Win for Web Accessibility in Domino’s Pizza Case,” January 15, 2019, www.lflegal.com/2019/01/dominos-ninth-circuit/? fbclid=IwAR17trrSpmvvPNi16D8R331AWfG1oRE5bU7HQEm1zAJdmW01_bHHEaScSbc. 12 Federal Communications Commission, “Twenty-First Century Communications and Video Accessibility Act 2010,” www.fcc.gov/general/twenty-first-century-communications-and-video-accessibility-act-0. 13 UK Government, “Equality Act 2010,” accessed January 25, 2016, www.legislation.gov.uk/ukpga/2010/ 15/contents. 14 Australian Government, “Accessibility and Inclusivity,” GOV.AU Content Guide, October 10, 2018, https://guides.service.gov.au/content-guide/accessibility-inclusivity. 15 Lazar et al., Ensuring Digital Accessibility; Ravi Malhotra and Megan Rusciano, “Using Provincial Laws to Drive a National Agenda: Connecting Human Rights and Disability Rights Laws,” in Disability, Human Rights, and Information Technology, ed. Jonathan Lazar and Michael Ashley Stein (Philadelphia: University of Pennsylvania Press, 2017), 94–110. 16 United Nations, “Convention on the Rights of Persons with Disabilities,” December 13, 2006, www.un. org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-onthe-rights-of-persons-with-disabilities-2.html. 17 Meryl Alper and Gerard Goggin, “Digital Technology and Rights in the Lives of Children with Disabilities,” New Media & Society 19, no. 5 (2017): 726–740. 18 Lazar et al., Ensuring Digital Accessibility, 184. 19 Joyojeet Pal, “The Accessibility Infrastructure and the Global South,” in Disability, Human Rights, and Information Technology, ed. Jonathan Lazar and Michael Ashley Stein (Philadelphia: University of Pennsylvania Press, 2017): 244–262. 20 Sanjay Jain, “ICT Access, Disability Human Rights, and Social Inclusion in India,” in Disability, Human Rights, and Information Technology (Philadelphia: University of Pennsylvania Press, 2017): 263–278. 21 Meryl Alper, “Promoting Emerging New Media Literacies among Young Children with Blindness and Visual Impairments,” Digital Culture & Education 4, no. 3 (2012): 243–256; Monika Weigand, Johannes Zylka and Wolfgang Müller, “Media Competencies in the Context of Visually Impaired People,” in Worldwide Commonalities and Challenges in Information Literacy Research and Practice, ed. Serap Kurbanoğlu, Esther Grassian, Diane Mizrachi, Ralph Catts and Sonja Špiranec (Cham, Switzerland: Springer, 2013), 190–197). 22 Jonathan Lazar, Paul T. Jaeger, Anthony Adams, Anthony Angelozzi, John Manohar, James Marciniak, Justin Murphy, Pouria Norasteh, Charles Olsen, Evangelos Poneres et al., “Up in the Air: Are Airlines Following the New DOT Rules on Equal Pricing for People with Disabilities When Websites are Inaccessible?” Government Information Quarterly 27, no. 4 (2010): 329–336. 23 Lazar et al., Ensuring Digital Accessibility. 24 Rich Donovan, The Global Economics of Disability: 2016 Annual Report, May 1, 2016, www.rod-group. com/sites/default/files/2016%20Annual%20Report%20-%20The%20Global%20Economics%20of%20Disabil ity.pdf. 25 Michelle Yin, Dahlia Shaewitz, Cynthia Overton and Deeza-Mae Smith, A Hidden Market: The Purchasing Power of Working-Age Adults With Disabilities (Washington, DC: American Institutes for Research, 2018), 1, www.air.org/system/files/downloads/report/Hidden-Market-Spending-Power-of-People-with-DisabilitiesApril-2018.pdf. 26 Sebastian Buckup, The Price of Exclusion: The Economic Consequences of Excluding People with Disabilities from the World of Work, ILO Employment Sector Working Paper No. 43 (Geneva: ILO, 2009), quoted in United Nations Department of Economic and Social Affairs, Global Status Report on Disability and Development (New York: United Nations, 2015), 101.

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Jonathan Lazar and Brian Wentz 27 Bureau of Labor Statistics, “Persons with a Disability: Labor Force Characteristics—2017,” news release, June 21, 2018, www.bls.gov/news.release/pdf/disabl.pdf. 28 Ben Clements, Graeme Douglas and Sue Pavey, “Which Factors Affect the Chances of Paid Employment for Individuals with Visual Impairment in Britain?” Work 39, (2011): 22, quoted in Alex Saunders, “The Jobs That Blind and Partially Sighted People Do,” (London: RNIB, 2015), www.rnib.org.uk/knowledgeand-research-hub-research-reports-employment-research/jobs-blind-partially-sighted. 29 CNIB, “Many Canadians Blind to Talents and Abilities of Job Seekers with Vision Loss,” October 3, 2016, www.newswire.ca/news-releases/many-canadians-blind-to-talents-and-abilities-of-job-seekers-withvision-loss-595615421.html. 30 Susanne M. Bruyere, William Erickson and Sara VanLooy, “Information Technology and the Workplace: Implications for Persons with Disabilities,” Disability Studies Quarterly 25, no. 2 (2005), http://dsq-sds.org/ article/view/548/725; Phillip W. Braddy, Adam Meade and Christina M. Kroustalis, “Online Recruiting: The Effects of Organizational Familiarity, Website Usability, and Website Attractiveness on Viewers’ Impressions of Organizations,” Computers in Human Behavior 24, no. 6 (2008): 2992, 2993. 31 Jonathan Lazar, Abiodun Olalere and Brian Wentz, “Investigating the Accessibility and Usability of Job Application Web Sites for Blind Users,” Journal of Usability Studies 7, no. 2 (2012): 68–87. 32 Reyazuddin v. Montgomery Cnty., 789 F.3d 407 (4th Cir. Md. June 15, 2015). 33 Lazar et al., Ensuring Digital Accessibility. 34 Job Accommodation Network (JAN), Workplace Accommodations: Low Cost, High Impact (Morgantown, WV: US Department of Labor’s Office of Disability Employment Policy, 2018), 2, https://askjan.org/topics/ costs.cfm. 35 Bureau of Labor Statistics, “People with a Disability Less Likely to Have Completed a Bachelor’s Degree,” TED: The Economics Daily, July 20, 2015, www.bls.gov/opub/ted/2015/people-with-a-disability-lesslikely-to-have-completed-a-bachelors-degree.htm. 36 Nightingale v. Seattle School District, No. C14-1286 RAJ, (W.D. Wash., August 20, 2014). 37 Natalie L. Shaheen and Jonathan Lazar, “K-12 Technology Accessibility: The Message from State Governments,” Journal of Special Education Technology 33, no. 2 (June 2018): 83–97. 38 Alper, “Promoting Emerging New Media Literacies.” 39 US Department of Justice, “Justice Department Reaches Three Settlements Under the Americans with Disabilities Act Regarding the Use of Electronic Book Readers,” press release, January 13, 2010, www.justice. gov/opa/pr/justice-department-reaches-three-settlements-under-americans-disabilities-act-regarding-use. 40 Terrill Thompson, Sheryl Burgstahler and Dan Comden, “Research on Web Accessibility in Higher Education,” Journal of Information Technology and Disabilities 9, no. 2 (2003), http://itd.athenpro.org/volume9/ number2/thompson.html. 41 Marc Parry and Jeffrey Brainard, “Colleges Lock Out Blind Students Online,” Chronicle of Higher Education, December 12, 2010. 42 Lindsay McKenzie, “50 Colleges Hit with ADA Lawsuits,” Inside Higher Ed, December 10, 2018, www. insidehighered.com/news/2018/12/10/fifty-colleges-sued-barrage-ada-lawsuits-over-web-accessibility. 43 Shrirang Sahasrabudhe and Maurie Lockley, “Understanding Blind User’s Accessibility and Usability Problems in the Context of myITlab Simulated Environment,” Proceedings of the Americas Conference on Information Systems (AMCIS) (2014), https://aisel.aisnet.org/cgi/viewcontent.cgi? article=1242&context=amcis2014. 44 Brian Wentz and Jonathan Lazar, “Usability Evaluation of Email Applications by Blind Users,” Journal of Usability Studies 6, no. 2 (2011): 75–89. 45 “National Federation of the Blind Certifies Blackboard for Accessibility of Learning Platform,” Disabled World, August 12, 2010, www.disabled-world.com/disability/accessibility/blackboard-learning.php. 46 Catherine S. Fichten, Vittoria Ferraro, Jennison V. Asuncion, Caroline Chwojka, Maria Barile, Mai N. Nguyen, Ryan Klomp and Joan Wolforth, “Disabilities and e-Learning Problems and Solutions: An Exploratory Study,” Educational Technology & Society 12, no. 4 (2009): 241–256. 47 Jodi B. Roberts, Laura A. Crittenden and Jason C. Crittenden, “Students with Disabilities and Online Learning: A Cross-Institutional Study of Perceived Satisfaction with Accessibility Compliance and Services,” Internet and Higher Education 14, no. 4 (2011): 242–250. 48 Mike Kent, “Disability and eLearning: Opportunities and Barriers,” Disability Studies Quarterly 35, no. 1 (2015), http://dsq-sds.org/article/view/3815. 49 Jenny Preece, Online Communities: Designing Usability and Supporting Sociability (New York: Wiley & Sons, 2000). 50 Wentz and Lazar, “Usability Evaluation.”

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Web Accessibility for Blind People 51 Erin Brady, Yu Zhong, Meredith Ringel Morris and Jeffrey P. Bigham, “Investigating the Appropriateness of Social Network Question Asking as a Resource for Blind Users,” in Proceedings of the 2013 Conference on Computer Supported Cooperative Work (New York: ACM, 2013), 1225–1236. 52 Meredith Ringel Morris, Annuska Zolyomi, Catherine Yao, Sina Bahram, Jeffrey P. Bigham and Shaun K. Kane, “With Most of It Being Pictures Now, I Rarely Use It: Understanding Twitter’s Evolving Accessibility to Blind Users,” in Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (New York: ACM, 2016), 5506–5516. 53 Justine Jordan, “Top 10 Most Popular Email Clients of 2015,” litmus, December 15, 2015, https:// litmus.com/blog/top-10-most-popular-email-clients-of-2015? utm_campaign=top10_stats&utm_source=litmusblog&utm_medium=blog. 54 Wentz and Lazar, “Usability Evaluation.” 55 Lazar et al., Ensuring Digital Accessibility. 56 Javier Torrente, Manuel Freire, Pablo Moreno Ger and Baltasa Fernández-Manjón, “Evaluation of SemiAutomatically Generated Accessible Interfaces for Educational Games,” Computers & Education 83 (2015): 103–117. 57 Torrente et al., “Evaluation.” 58 Tony Morelli, John Foley and Eelke Folmer, “Vi-Bowling: A Tactile Spatial Exergame for Individuals with Visual Impairments,” in Proceedings of the 12th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2010), 179–186; Troy Allman, Rupinder K. Dhillon, Molly A. E. Landau and Sri H. Kurniawan, “Rock Vibe: Rock Band® Computer Games for People with No or Limited Vision,” in Proceedings of the 11th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2009), 51–58; Bei Yuan and Eekle Folmer, “Blind Hero: Enabling Guitar Hero for the Visually Impaired,” in Proceedings of the 10th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2008), 169–176; Daniel Miller, Aaron Parecki and Sarah A. Douglas, “Finger Dance: A Sound Game for Blind People,” in Proceedings of the 9th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2007), 253–254. 59 Federal Communications Commission, “Video Description,” July 16, 2018, www.fcc.gov/general/videodescription. 60 Federal Communications Commission, “Video Description.” 61 Federal Communications Commission, “Closed Captioning on Television,” April 11, 2018, www.fcc.gov/ node/23883. 62 Stern v. Sony Corp., 2010 US Dist. LEXIS 144, 042 (C.D. Cal. February 8, 2010). 63 Joyram Chakraborty, “How Does Inaccessible Gaming Lead to Social Exclusion?” in Disability, Human Rights, and Information Technology, ed. Jonathan Lazar and Michael Ashley Stein (Philadelphia: University of Pennsylvania Press, 2017), 212–223. 64 Lourdes Moreno, Paloma Martínez, Ana Iglesias and Maria Gonzalez, “HTML 5 Support for an Accessible User-Video-Interaction on the Web,” in Human-Computer Interaction: INTERACT 2011, ed. Pedro Campos, Nicholas Graham, Joaquim Jorge, Nuno Nunes, Philippe Palanque and Marco Winckler (Berlin: Springer, 2011), 535–539.

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24 SOCIAL MEDIA AND DISABILITY It’s Complicated Mike Kent

Introduction This chapter explores the relationship between social media and disability—as Facebook would say of the relationship “‘it’s complicated.” On the one hand, social media has provided many people with disabilities with an avenue for social interaction and participation, commerce and political activism that would be hard or even impossible without these platforms. However alongside this, they also have had the potential to place yet another layer of exclusion and disadvantage over people’s lives as a result of threats to their privacy and also, through a lack of accessibility, to exclude them from both those potential positive avenues and broader participation in society. This chapter starts by looking at how social media can be conceived, and considers its conspicuous place in modern media consumption. The chapter then turns to the affordances in the social media sphere that have been made for people with disabilities. These have enabled their increased participation in society, encouraged the emergence of new media disability activists and alternate avenues of expression. It then examines the potential downside of this greater flow of communication as people have less control of how they are portrayed through social media. It then briefly overviews the evolution of accessibility for mainstream social media—from MySpace through to Facebook, Twitter and YouTube. The enormous improvements made to accessibility in the current market-leading platforms, both in terms of their own accessibility and the ability of people to make their own user-generated content accessible, is considered alongside the continuing notable challenges in today’s evolving social media landscape. Finally, the chapter explores current trends in social media and the implications of these developments for people with disabilities. Social media can trace its origins back to the early bulletin board systems of the 1980s, and the first social media network that took the form of the way they are currently understood dates from 1987 when Sixdegrees.com was launched.1 However, it was not until the advent of MySpace in 2003 that these platforms became a significant feature of people’s Internet use—by 2007 MySpace had overtaken Google as the most visited site on the Internet.2 That same year Boyd and Ellison famously defined a social network: We define social network sites as web based services that allow individuals to (1) construct a public or semi-public profile within a bounded system, (2) articulate a list of other users with whom they share a connection, and (3) view and traverse their list of

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connections and those made by others within the system. The nature and nomenclature of these connections may vary from site to site.3 Since that time social media has spread beyond the boundaries of the World Wide Web on a fixed computer screen and has become more integrated into people’s daily lives through mobile devices and apps. Over the following decade the nature and understanding of these networks has also changed. In 2015 Bucher critiqued and updated the definition above, noting that: Social media are not so much about articulating or making an existing network visible. Rather, being social in the context of social media means creating connections within the boundaries of adaptive algorithmic architectures. Every click, share, like and post creates a connection, initiates a relation. The network dynamically grows, evolves, becomes. The network networks. The social in social media is not a fact but a doing.4 Social media consists of the active connections between the technology supporting the network, the users of the network and, in turn, their connections both within and across different platforms. Indeed, Papacharissi has observed that all media is social media in some way.5 Leaver further expanded on this, adding that “social media is never just about an individual, but also the way individuals are always already joined together as families, groups, communities and more.”6 Social media is a significant and growing area of communication. The low barriers to participation and ease of access that are a feature of today’s social media sites—as well as the ability to generate and share a wide variety of information and media types quickly and cheaply to large numbers of people—sets them apart from previous services and challenges traditional conceptions of mass media. In 2011, President Obama declared that access to social media occupied a place alongside core values such as freedom of speech and freedom of expression.7 In 2009 Graeme Innes, the Australian Disability and Race Discrimination Commissioner, speculated that, given the opportunities provided through social media for people to participate in society, in the future not having access to social media could be seen as a form of disability.8 Social media platforms also provide considerable opportunities for people with disabilities to participate in society through communication and exchange, social interaction, activism, leisure and commerce. As Ellis and Goggin observed in 2013, “Disability then has a lot to tell us about the what the social in social media means.”9 At its peak MySpace had 100 million users.10 However, this number does not begin to compare to the popular adoption of more recent platforms. A snapshot of these from early 2017 provides some context for this.11 Facebook, the network that took the number one place from MySpace in 2008 now has 1.871 billion users,12 or just over 25 percent of the world’s total population. Facebook still has overlapping characteristics with MySpace and is recognizable through Boyd and Ellison’s definition with users maintaining a profile page and friends or contacts list that they interact with. However, it has also adopted a number of other features of instant messaging, video and image sharing and live video that now seem to be more in line with Bucher’s critique. The similarly well-established network—at least in terms of social media history—Twitter is a microblogging site with users generating 140 character “tweets” to be read by their followers, and more recently also photos and videos, and has 117 million active users.13 The photo-sharing site Instagram, now a subsidiary of Facebook, has 600 million users.14 While these three might represent the more traditional type of social media, with users having a central profile and friends or followers that they interact with, the smartphone-based messaging service WhatsApp (also acquired by Facebook in 2014), has 1 billion users, and is more familiar to Bucher’s understanding of connections and relations. Challenging the dominance of these American-based networks, WeChat (Weixin in China), launched in 2010 and is a Chinese mobile 265

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phone-based social media platform based again around messaging that has 846 million users;15 the Chinese QQ network, also based around messaging, has 877 million users.16 While each of these networks has messaging services at its heart they also provide other associated content sharing, commercial and communications options within the different platforms.

Why Social Media Matters Social media increasingly overlaps with more traditional media and is an established part of popular culture. People utilize it through a “second screen” when consuming more traditional media and as a normalized part of media consumption.17 It challenges traditional top-down understandings of media creation and distribution, while also overlapping with them. It is hard to conceive of President Trump’s media presences without his use of Twitter to have his opinions reported, first to his 36 million followers, and then rebroadcast through traditional news media outlets to many more.18 In 2016, the Pew Research Centre found that more than 60 percent of people in the United States were accessing their news through social media.19 As well as media these networks form valuable channels of communications for personal interactions, and many other areas such as education20 and critical disaster communications.21 Social media is also important as a tool for people with disabilities enabling communications, exchange and activism.22 For people with disabilities social media provides the opportunity for what Dobranski and Hargittai observed as “the removal of their disability from the forefront of interaction.”23 While a person in a face-to-face context will often have no option but to disclose that they are a person with a disability, interaction through social media gives greater control over this disclosure.24 Many people with disabilities will also often face difficulties in navigating the analogue built environment due to inaccessible design.25 In this context social media provides another avenue of communications, interaction, commerce and participation in society. Unfortunately, like the analogue world, the digital environment can also be constructed in a way that is inaccessible to people with disabilities26 and as outlined below access to social media has often presented as a challenge to this part of the population.

Disability, Social Media and Activism As well as an avenue to greater participation in society, social media is also increasingly being used as a vehicle for activism regarding disability rights and access and awareness. Given the difficulties often experienced by people with disabilities in attending more traditional protests,27 there has been a rise in social media-hosted activism. This can take a number of different forms. At its most direct this can be seen in protests using social media to agitate to make the social media platforms more accessible for people with disabilities, such as Andrew McKay’s 2007 Facebook page, the “Official Petition for a More Accessible Facebook.”28 More broadly, social media is used to facilitate activism across a range of disability rights and disability technology issues, both by people with disabilities as well as their allies, human rights practitioners, civil society organizations and governments.29 It is used to help mobilize and organize more traditional protests,30 as well as amplify the impact of protests through direct dissemination through social media and to both influence and circumvent mainstream media coverage.31 It is also used as a forum to extend the reach of existing civil society organizations in different countries.32 It enables both the organization of physical protests, and also the ability for people, who due to their disability would find it difficult to attend a physical protest, to make their voices heard through associated social media activity.33

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Social media has been used to raise awareness of disability rights issues such as in the #107 Days campaign. This campaign mobilized people in the United Kingdom and around the world through Twitter and Facebook to raise awareness over the treatment of people with learning disabilities by the UK National Health Service following the death of a young man in their care after 107 days of admission to a short-term assessment and treatment unit. It also then served as a tool for people to share experiences and celebrate his life in the 107 days leading to the first anniversary of his death, bringing together more than 45,000 people through these networks.34 Social media is also used to build communities35 and create new forms of online activism such as Liz Crow’s Bedding Out performances that linked Twitter and social media to online audience interaction in her live performance that aimed to “bring to light the complexity of her lived experience as a disabled person”36 and extended the audience through both space and time by linking the physical performance to a Twitter hashtag that could be accessed remotel, and was active both before and after the formal event. Social media is also used to facilitate crowd sourcing of disability resources, either directly as finance—such as the funding collected by EasyChirp to update its accessible Twitter workaround37—or via such avenues as the WeChat Voice Donor program that is used to raise awareness of disability issues in China and also helps create accessible audiobooks by facilitating people’s ability to donate their own voice to the project.38 Yet, while social media can be lauded for its emancipatory possibilities, it is first and foremost a place of great commercial potential. Social media today is characterized by private companies operating to provide a seemingly “free” service that actually turns over high profit. The networks represent the often-repeated notion that on the Internet, if something is free, then you are the product. Your information attracts the advertising dollar and the more detailed the profile of a user and their online networks, the more valuable they are to sell. As a result, this can be a threat to people’s privacy and, for people with disability in particular, their control of the disclosure of their disability online. This balance of inclusion versus privacy is also “complicated.”

Social Media, Disclosure and Privacy While Dobranski and Hargittai noted the benefits of no longer having disability at the forefront of people’s interactions,39 the very sharing nature of social media means control of disclosure can be contested. Individuals have less control over how the network portrays them—that is, information can be inferred from social media that is not explicitly shared by an individual40 and the algorithms that Bucher41 describes can easily extend social media beyond an individual’s control or knowledge. For example, when the Facebook app is downloaded onto a person’s smartphone, the network accesses their device’s contact list, reporting back information such as their contacts’ phone numbers to enhance the information the network stores—taking this data about a third party without the knowledge or consent of the person it refers to. Similarly, since Facebook purchased the Onavo App in 2013, it now uses this security app to monitor users’ data use and the use of competing social media on people’s mobile devices.42 Less covertly, there is little control on many networks on comments and photos made by other people that can be linked back to an individual. Control over their social media presence is moved beyond an individual’s reach and onto a network of people and automation outside their control, making online communication a place where public and private spheres often collide.43 A recent example of this can be seen in the case of Carly Findlay who had her photo shared through Reddit without her knowledge or authorization after her image was found in a Google image search for an unrelated topic. The Reddit thread then quickly accumulated a collection of unfavorable comments about her appearance as a person with the skin condition ichthyosis. As she cautioned of the social media experience, “I hope others out there are strong enough like me to deal with it.”44 267

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The images of people with disabilities are often used, without their permission, to create what Stella Young termed “inspiration porn”45 where the images are used through social media to invoke pity or as symbols of heroism in overcoming adversity. These images are often used in a fraudulent way, without a person’s knowledge or consent, to raise money or create a viral image.46 They also objectify people with disabilities and undermine the genuine aspirations of people with disabilities to be able to better access society. As Craig Wallace observed: “If we want to portray things on social media we should be showcasing the restaurant toilets that are inaccessible, or the spaces that aren’t made well, we should be talking about the lack of support and employment opportunities.”47 These concerns around disclosure are further exacerbated through the way social media is increasingly accessed as a mash-up of different platforms. Social media overlaps on itself with different platforms imbedded within each other as a mashup of different services.48 Tweets link to YouTube videos that in turn are embedded in Facebook posts and blogs. As Findlay’s case illustrates, a picture or post shared on one network can find its way across interconnected social media networks. As well as creating problems for control over one’s own social media identity and reach, if any of these multiple platforms is inaccessible it affects access to the entire network. As a further complication to this mash-up of platforms, the economic imperative of each platform to try to capture individual users and their network for advertising revenue, can also lead to a loss of accessibility. For example, when Facebook started blocking the layer of YouTube videos that Google used to present their advertising when videos were hosted on their network, they also blocked the captioning services that may have accompanied those videos,49 thereby creating an unnecessary block to accessibility driven solely by commercial concerns. However, not all accessibility problems in accessing social media for people with disabilities are linked to commercial concerns. Often it seems decisions are made that deliberately exclude people with disabilities from social networks as consumers as accessibility to platforms is negotiated and renegotiated. Just getting access to social media is also “complicated.”

The Evolution of Social Media Accessibility The first of the large social media platforms with a significant global reach, MySpace, was notorious for both its initial lack of accessibility and its resistance to pressure to make changes to make it more accessible.50 As well as using the often inaccessible CAPTCHA authentication system for users to create an account,51 each user designed their own home page and no accessible templates were suggested or made available. This led to the majority of content on the network being inaccessible to screen readers and not meeting the W3C Web Content Accessibility Guidelines at the time (WCAG 1.0).52 Many homepages automatically played music and had many poorly organized links, both of which hindered screen-reader technologies, some also displayed with rapidly flashing backgrounds that were hazardous to people who suffered from migraines or seizures. Despite lobbying from the American Foundation for the Blind, the network remained inaccessible and was not prepared to even provide simple options such as the alternative of audio CAPTCHA authentication to help make the network more accessible to a wider part of the community. Similarly, when Facebook first launched it had a number of accessibility problems,53 again often focused around the CAPTCHA authorization protocols and access for people who use screen readers. Twitter also launched with notable accessibility problems including with its section headings, color contrasts, labels and form fields, keyboard navigation, text equivalent for images, language and validation processes.54 Dennis Lembree designed a work-around for Twitter to make it accessible called Easy Chirp, although this was disrupted in 2013 when Twitter upgraded its interface requiring this accessibility work-around to be redesigned.55 YouTube similarly was found to have notable accessibility problems scoring a 4 out of 22 on evaluations of its accessibility.56 268

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Facebook was overhauled for accessibility in 2009,57 in consultation with the American Foundation for the Blind, and in part as a reaction to the activism led by Andrew McKay’s petition,58 yet in 2011 when Dennis Boudreau tested the main social media platforms for accessibility for people with disabilities he observed that “they couldn’t do worse if they tried.”59 Social media, as with other technology, while offering liberating potential for people with disabilities also can serve to exclude people though lack of access, either through poorly designed interfaces or lack of access to technology.60 As Ellis and Goggin observed: “The decision to make a social networking site inaccessible is inherently political, not least because there are many more different options available digitally than there usually are in the offline world.”61 The following year in 2012, Hollier also observed that all the mainstream social media networks were inaccessible to some degree. However, he also noted that people with disabilities were good at finding workarounds to gain access.62 By 2017, Hollier found that the mainstream social networking sites of Twitter, Facebook and YouTube “have led by example to continually improve the issues and ultimately ensure that people with disabilities can use their service.”63 In addition to improvements in accessing social media sites for people with disabilities, steps have also been taken to make the mainly user-generated content provided through these networks more accessible. YouTube provided the option to caption videos in 2006 and, as a further option, has offered automatic captions since 2009. While these are not always accurate, they do provide an easy way for users to increase the range of accessibility of their posts. Since 2014, the YouDescribe network also allows for crowd-sourced audio descriptions to be added to YouTube video content to provide access for the blind and low-vision community.64 In 2016, Facebook began automatically providing descriptions of pictures on its network using automatic alternative text also to make them more accessible to users who are blind or with low vision. In the same year, it added automatic captioning to its videos to aid people who are deaf or with hearing impairments.65 In 2017 Facebook began captioning live broadcasts made through the network.66 While these initiatives are also driven by commercial imperatives—once a photo has a description, or spoken words can be analyzed as text, it becomes much easier to match them to advertising—they do, nonetheless, provide an increasingly more accessible social media environment for people with disabilities. As well as efforts to make existing content more accessible for people with disabilities, there have also been initiatives to facilitate people with disabilities generating their own content. In 2015, the World Wide Web Consortium (W3C) launched their updated Authoring Tool Accessibility Guidelines (ATAG 2.0). These provide “guidelines for designing web content authoring tools that are both more accessible to authors with disabilities and designed to enable, support, and promote the production of more accessible web content by all authors.”67 However, as new platforms develop and become popular in an evolving social media environment, so does the potential for inaccessible elements to once again exclude people with disabilities. As Alex Varley, the CEO of Media Access Australia, has observed, “Often as software and platforms develop they improve their features but lose their accessibility, and then the accessibility catches up again just before a new version is released.”68 For example, according to Media Access Australia, Twitter’s adaption to allow users to tweet images in 2011 “took accessibility backwards”69 as it excluded people relying on a screen reader. Similarly, relatively new social media platforms are not following their more established competitors’ example when it comes to accessibility—Snapchat’s app for the iPhone does not properly incorporate the voice-over feature on its operating system,70 excluding people who are blind or with low vision from an already very visually based medium.

Future Trends in Social Media In a still rapidly developing social media environment making predictions can always be fraught. There are however a number of developments and initiatives that loom in the near future. 269

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Social media has evolved over time to a point where all the mainstream, largely Americanbased social media platforms have—prodded by activists and disability accessibility legislation— become largely accessible for people with disabilities.71 There is also developing potential for the increasingly cloud-based nature of social media to enable future accessibility features through initiatives such as the Global Public Infrastructure Initiative (GPII) that would allow an individual’s preferred accessibility features to migrate seamlessly from device to device along with their social media accounts.72 Similarly, the increasing use of smartphones as hardware platforms builds a layer of accessibility provided through the phones’ operating systems into people’s social media access. The potential for social media to spread through the new developments in wearable technologies such as smartwatches, and potentially in the near future smartglasses, also allows for the potential to add tactile input and outputs from and to social media, and greater potential for digital visual analysis of the analogue environment, along with the concomitant threats to privacy and control. China has only been formally connected to the Internet since 1994 and many of the Westernbased social media networks are blocked by the Chinese government, yet as noted in the introduction, two of the largest social media sites are now based in China. These lead a vibrant and expanding Chinese-language focused social media ecology, based around the largest Internet user base in the world of over 700 million people.73 While there are notable examples of how social media is being used in this context to advance the rights of people with disabilities through Chinese non-government organizations through networks such as WeChat and the Twitter-like Weibo social media network,74 Chen, Bong and Li caution that the Chinese-language social media sphere has been little studied in terms of accessibility for people with disabilities.75 In their study of accessibility of the WeChat social media network, they found a number of problems with accessibility and a design focus on usability over accessibility.76 Ding and Giannoumis also cautioned of the relatively low level of awareness of accessibility issues among government, IT and social media companies in China.77 The continued rise of Chinese-based social media platforms and their expansion into Western markets creates additional potential challenges for accessibility as they operate outside the established Western (American) legislative and activist environment. Other developments beyond social media may also threaten current accessibility in this area. While YouDescribe provides opportunities to crowdsource audio description for YouTube videos, and both YouTube and Facebook are providing automatic captions, a recent victory by the copyright industry in Dutch courts to have any third-party captioning of video and TV content banned78 may threaten both automatic and crowdsourced accessibility initiatives.79

Conclusion Social media presents an expanding and evolving media space, with unstable relationships constantly being negotiated and renegotiated in line with Bucher’s insight that “the social in social media is not a fact but a doing.”80 In this context, the obstacles and benefits these networks present to people with disabilities is in a similar state of flux and negotiation. This chapter has provided an overview of social media as an evolving and growing media form and discussed its relationship to disability. Tim Berners-Lee described the Web as half social and half technical.81 This balance is even more present in the realm of social media, where one necessarily supports the other. It is both the way that the platforms are used by the network of users and the technical and design decisions made by the developers of social media platforms, both new and evolving, that determine the potential for participation of people with disabilities. These technical decisions are political decisions about who is included and who is considered a potential part of any social media network. This link between the

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social, technical and accessible, all alongside an evolving social media environment, continues to foster a relationship that is still in the “it’s complicated” category. This does not have to be the case. While the history of social media shows that accessibility for people with disabilities has largely had to be retrofitted to the current leading networks from an often inaccessible beginning, accessibility should be incorporated from the beginning of the process, so that new initiatives are born accessible and ready to be embraced by all users.82 As well as obvious universal design considerations to make user interfaces accessible, the advances in technologies such as automatic captioning and the increasing awareness, and deployment of, audio description has the potential to open up further opportunities for people with disabilities to actively participate in this increasingly important media sphere.

Notes 1 Sacide Güzin Mazman and Yasemin Koçak Usluel, “Modelling Educational Usage of Facebook,” Computers and Education 55, no. 2 (2010): 444–453, www.sciencedirect.com/science/article/pii/S0360131510000424? via%3Dihub. 2 Pete Cashmore, “MySpace, America’s Number One,” Mashable, July 11, 2006, http://mashable.com/2006/ 07/11/myspace-americas-number-one. 3 Danah M. Boyd and Nicole B. Ellison, “Social Network Sites: Definition, History and Scholarship,” Journal of Computer-Mediated Communication 13, no. 1 (2007): 210–230. 4 Taina Bucher. “Networking, or What the Social Means in Social Media,” Social Media + Society 1, no. 1 (2015): 1–2. 5 Zizi Papacharissi, “We Have Always Been Social,” Social Media + Society 1, no. 1 (2015): 1–2. 6 Tama Leaver, “Researching the Ends of Identity: Birth and Death on Social Media,” Social Media + Society 1, no. 1 (2010): 1–2. 7 Spencer Ackerman, “Egypt’s Internet Shutdown Can’t Stop Mass Protests,” Wired, January 28, 2011, www.wired.com/dangerroom/2011/01/egypts-internet-shutdown-cant-stop-mass-protests/#more-39575. 8 Graeme Innes, “Creating Welcoming School Communities” (paper presented at the More Than Gadgets Conference, Fremantle, Western Australia, August 2009). 9 Katie Ellis and Gerard Goggin, “Disability and Social Media,” in The Social Media Handbook, ed. Jeremy Hunsigner and Theresa M. Senft (New York: Routledge, 2013), 126–143. 10 Kevin Kelleher, “How Facebook Learned from MySpace’s Mistakes,” CNN Money, November 19, 2010, http://tech.fortune.cnn.com/2010/11/19/how-facebook-learned-from-myspaces-mistakes. 11 Robert Allen, “Top Social Network Sites by Numbers of Active Users 2017,” Smart Insights, February 23, 2017, www.smartinsights.com/social-media-marketing/social-media-strategy/new-global-social-mediaresearch/attachment/top-social-network-sites-by-number-of-active-users-2017. 12 Allen, “Top Social Network Sites by Numbers.” 13 Allen, “Top Social Network Sites by Numbers.” 14 Allen, “Top Social Network Sites by Numbers.” 15 Allen, “Top Social Network Sites by Numbers.” 16 Allen, “Top Social Network Sites by Numbers.” 17 Fabio Giglietto and Donatella Selva, “Second Screen and Participation: A Content Analysis on a Full Season Dataset of Tweets,” Journal of Communications 64, no. 2 (2014): 260–277. 18 Fortune, August 17, 2017, http://fortune.com/2017/08/17/trump-worth-to-twitter. 19 Jeffrey Gottfried and Elisa Shearer, News Use Across Social Media Platforms 2016 (Washington, DC: The Pew Centre 2016), www.journalism.org/2016/05/26/news-use-across-social-media-platforms-2016. 20 See, for example, Mike Kent and Tama Leaver, An Education in Facebook? Higher Education and the World’s Largest Social Network (New York: Routledge, 2014). 21 See, for example, DeeDee Bennett, Paul M. A. Baker and Helena Mitchel, “New Media and Accessible Emergency Communications: A United States-Based Meta Analysis,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 119–130; Mike Kent and Katie Ellis, “People with Disability and New Disaster Communications: Access and the Social Media Mash-up,” Disability and Society 30, no. 3 (2015): 419–431. 22 Katie Ellis and Gerard Goggin, Disability and the Media (New York: Palgrave Macmillan, 2015); Katie Ellis and Mike Kent, eds., Disability and Social Media: Global Perspectives (New York: Routledge, 2017).

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Mike Kent 23 Kerry Dobranski and Eszter Hargittai, “The Disability Divide in Internet and Use,” Information, Communication and Society 9, no. 3 (2006): 309–311. 24 As Ellis and Goggin note, while this is the case for many people with disabilities for people with some impairments, such as dyslexia, the reverse is also true, with what would normally be considered an invisible disability in face-to-face interactions being “outed” through the norms and practices of social media interaction. Ellis and Goggin, “Disability and Social Media,” 129. 25 Vic Finkelstein, “Disability and the Helper/Helped Relationship: A Historical Overview,” in Handicap in a Social World: A Reader, ed. Ann Brechin, Penny Liddiard and John Swain (London: Hodder & Stoughton, 1981); David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2000); Michael Oliver, Understanding Disability: From Theory to Practice (Basingstoke, UK: Palgrave Macmillan, 1996). 26 Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (New York: Rowman & Littlefield, 2003); Katie Ellis and Mike Kent, Disability and New Media (New York: Routledge, 2011). 27 Frances Ryan, “Social Media Means the Voices of the Disabled Can No Longer Be Ignored by Those in Power,” New Statesman, August 7, 2014, www.newstatesman.com/2014/07/social-media-means-voices-dis abled-can-no-longer-be-ignored-those-power. 28 Ellis and Goggin, Disability and the Media; Ellis and Kent, Disability and New Media; Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). 29 Katie Ellis, Gerard Goggin and Mike Kent, “Disability’s Digital Frictions: Activism, Technology, and Politics,” Fibreculture Journal: Entanglements—Activism and Technology 26 (2015): 7–30, http://twentysix.fibrecul turejournal.org/fcj-188-disabilitys-digital-frictions-activism-technology-and-politics. 30 Claire Preston, “Resisting Disability Benefits Cuts in a Digital Age” (paper presented at the Social Policy Association Conference, University of Lincoln, 4–6 July, 2011), www.social-policy.org.uk/lincoln2011/ Preston%20P6.pdf. 31 Ellis, Goggin and Kent, “Disability’s Digital Frictions.” 32 See, for example, Jian Xu, Mike Kent, Katie Ellis and He Zhang, “One Plus One: Online Community Radio for the Blind in China and Social Media,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 318–332. 33 Ryan, “Social Media Means the Voices of the Disabled Can No Longer Be Ignored.” 34 Sara Ryan and George Julian, “Personal Reflections on the #107 Days Campaign: Transformative, Subversive or Accidental?” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 25–40. 35 See Laurence Parent and Marie-Eve Veilleux, “Transport mésadapté: Exploring Online Disability Activism in Montréal,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 89–100; Magdalena Zdrodowska, “Social Media and Deaf Empowerment: The Polish Deaf Communities’ Online Fight for Representation,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 13–24. 36 Lucy Burke and Liz Crow, “Bedding Out: Activism and Twitter,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 57–74. 37 Dennis Lembree, “Easy Chirp 2: Contribute to an Inclusive Twittersphere,” Kickstarter, 2013, www.kickstar ter.com/projects/dlembree/easy-chirp-2-contribute-to-an-inclusive-twittersph. 38 Mike Kent, Katie Ellis, Joy Zhang and He Zhang, “WeChat and the Voice Donor Campaign: An Example of ‘Doing Good’ on Social Media,” in Chinese Social Media: Social, Cultural and Political Implications, ed. Mike Kent, Katie Ellis and Jian Xu (New York: Routledge, 2018). 39 Dobranski and Hargittai, “The Disability Divide.” 40 See Carter Jernigan and Behram F. T. Mistree, “Gaydar: Facebook Friendships Expose Sexual Orientation,” First Monday 14, no. 10 (2009), http://firstmonday.org/ojs/index.php/fm/article/view/2611. 41 Bucher, “Networking,” 1. 42 Jon Fingas, “Facebook Knew About Snap’s Struggles Months Before the Public,” Engadget, August 13, 2017, www.engadget.com/2017/08/13/facebook-knew-about-snap-struggles-through-app-tracking. 43 Mark Latonero and Irina Shklovski, “Emergency Management, Twitter, and Social Media Evangelism,” International Journal of Information Systems for Crisis Response and Management 3, no. 4 (2011): 1–16. 44 Matt Young, “Carly Findlay Suffers Skin Condition, Wins Internet After Copping Abuse on Internet Site Reddet,” News.com.au, December 20, 2013, www.news.com.au/technology/online/carly-findlay-suffersskin-condition-wins-internet-after-copping-abuse-on-internet-site-reddit/news-story/ 062a7d78b197eacebfa2d38fef2bd041.

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Social Media and Disability 45 Stella Young, “We’re Not Here For Your Inspiration,” The Drum, July 3, 2012, www.abc.net.au/news/ 2012-07-03/young-inspiration-porn/4107006. 46 Beth Haller and Jeffrey Preston, “Confirming Normalcy: ‘Inspiration Porn’ and the Construct of the Disabled Subject,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 41–56. 47 Jill Stark, “Disability Advocates Demand an End to ‘Slacktivism’ and ‘Inspiration Porn,’” Sydney Morning Herald, January 10, 2016, www.smh.com.au/national/disability-advocates-demand-an-end-to-slacktivismand-inspiration-porn-20160109-gm2dw9.html. 48 Kent and Ellis, “People with Disability and New Disaster Communications.” 49 Scott Hollier, Sociability: Social Media for People with a Disability (Ultimo, NSW: Media Access Australia, 2012), http://mediaaccess.org.au/online-media/social-media. 50 Martin Cahill and Scott Hollier, Social Media Accessibility Review (version 1.0), (Ultimo, NSW: Media Access Australia, 2009), http://mediaaccess.org.au/sites/default/files/files/Social%20Media%20Accessibility% 20Review%20v1_0.pdf; Ellis and Kent Disability and New Media. 51 CAPTCHA is the acronym for “Completely Automated Public Turing Test to Tell Computers and Humans Apart.” It consists of the visually garbled text that people are asked to interpret before accessing a network or website. The system is designed to thwart attempts by computers to interpret the text with obvious implications for those who rely on screen-reading technology as well as people who have other perceptual or cognitive impairments. See, for example, AbilityNet Web Accessibility Team, Social networking websites, State of the eNation Reports (London: AbilityNet, 2008), www.abilitynet.org.uk/sites/abilitynet.org.uk/files/2008Social NetworkingSites_3.pdf; Alan Foley and Rick Voithofer, “Social Networking Technology, NetGen Learners, and Emerging Technology: Democratic Claims and the Mythology of Equality” (paper presented at the American Educational Research Association (AERA) National Conference, New York, 2008). 52 W3C, “Web Content Accessibility Guidelines 1.0,” W3C Recommendation, May 5, 1999, www.w3.org/ TR/WCAG10. 53 AbilityNet, “State of the eNation.” 54 Dennis Boudreau, “Social Media Accessibility: Where Are We Today?” (paper presented at a11ybos 2011, Boston, September 17, 2011), www.denisboudreau.org/presentations/2011/a11yCampTO/#1. 55 Katie Ellis and Mike Kent, “Community Accessibility: Tweeters Take Responsibility an Accessible Web 2.0,” Fast Capitalism 7, no. 1 (2010), www.uta.edu/huma/agger/fastcapitalism/7_1/elliskent7_1.html. 56 Boudreau, “Social Media Accessibility”; Hollier, “Sociability.” 57 C. R. Augusto, “Making Facebook Accessible for Everyone,” Facebook Blog, April 7, 2009, https://blog. facebook.com/blog.php?post=71852922130. 58 Ellis and Goggin, “Disability and Social Media,” 137. 59 Boudreau, “Social Media Accessibility.” 60 Susannah Fox, Americans Living with Disability and Their Technology Profile (Washington, DC: Pew Internet and American Life Project, 2011). 61 Ellis and Goggin, “Disability and Social Media,” 137. 62 Hollier, “Sociability.” 63 Scott Hollier, “The Growing Importance of Accessible Social Media,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (New York: Routledge, 2017), 77–88. 64 Berenice Freedome, “Berkley Scientist Designs Tools for the Visually Impaired,” KALW Radio, http:// kalw.org/post/berkeley-scientist-designs-tools-visually-impaired#stream/0. 65 Josh Constine, “Facebook Add Automatic Subtitling for Page Videos,” Techcrunch, January 4, 2017, https:// techcrunch.com/2017/01/04/facebook-video-captions. 66 Supratik Lahiri and Jeffrey Wieland, “Making Facebook More Accessible with Closed Captions,” Facebook Newsroom, June 6, 2017, https://newsroom.fb.com/news/2017/06/making-facebook-live-more-accessiblewith-closed-captions. 67 W3C, “Authoring Tool Accessibility Guidelines (ATAG) 2.0,” 2015, www.w3.org/TR/ATAG20. 68 Media Access Australia, “Ten Years of Accessibility on Twitter,” 2016, https://mediaaccess.org.au/latest_ news/news/ten-years-of-accessibility-on-twitter. 69 Media Access Australia, “Ten Years of Accessibility on Twitter.” 70 Sarah Hocking, “Make Snapchat Accessible,” Blind Intuition, September 13, 2016, www.blindintuition. com/make-snapchat-accessible. 71 Hollier, “The Growing Importance,” 86. 72 Hollier, “The Growing Importance”; Raising the Floor, GPII—How It Will Work, 2014, http://gpii.net/ content/how-gpii-will-work.

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73 Mike Kent, Katie Ellis and Jian Xu, eds., Chinese Social Media: Social, Cultural and Political Implications (New York: Routledge, 2018). 74 Xu et al., “One Plus One;” Kent et al., “WeChat.” 75 Weiqin Chen, Way Kiat Bong and Nan Li, “The Accessibility of Chinese Social Media Applications: A Heuristic Evaluation of the WeChat app,” in Chinese Social Media: Social, Cultural and Political Implications, ed. Mike Kent, Katie Ellis and Jian Xu (New York: Routledge, 2018). 76 Chen et al., “The Accessibility of Chinese Social Media.” 77 Yao Ding and G. Anthony Giannoumis, “Accessibility in China: a Peep at a Leopard Through a Tube,” in Chinese Social Media: Social, Cultural and Political Implications, ed. Mike Kent, Katie Ellis and Jian Xu (New York: Routledge, 2018). 78 Sebastian Anthony, “Fan-Made Subtitles for TV Shows and Movies Are Illegal, Court Rules,” Arstechnica UK, 21 April, 2017, https://arstechnica.co.uk/tech-policy/2017/04/fan-made-subtitles-for-tv-shows-andmovies-are-illegal. 79 Scott Hollier, Katie Ellis and Mike Kent, “User Generated Captions: From Hackers, to the Disability Digerati, to Fansubbers,” M/C Journal 20, no. 3 (2017), http://journal.media-culture.org.au/index.php/ mcjournal/article/view/1259. 80 Bucher, “Networking,” 1. 81 Tim Berners-Lee, “Net Neutrality and Internet Freedom” (paper presented at the 22nd International World Wide Web Conference, Rio de Janeiro, 13–17 May, 2013), http://www.2013.org/program/netneutrality-and-internet-freedom. 82 Brian Wentz, Paul T. Jaeger and Jonathan Lazar, “Retrofitting Accessibility: The Legal Inequality of Afterthe-Fact Online Access For Persons with Disabilities in the United States,” First Monday 16, no. 11 (2011), http://firstmonday.org/article/view/3666/3077; Ellis and Kent, Disability and New Media; Ellis and Kent, Disability and Social Media, 4.

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25 WHEN FACE-TO-FACE IS SCREEN-TO-SCREEN Reconsidering Mobile Media as Communication Augmentations and Alternatives Meryl Alper

Introduction The fear that mobile technologies impair face-to-face human communication is a core anxiety of modernity.1 Long before their capacity for Internet connectivity, portable media such as newspapers, music players and even kaleidoscopes were blamed for dulling an individual’s sense of presence and attention to environmental cues2—or, as the idiom goes, “nose in a book, head in the clouds.” At present, concerns abound that the overuse of smartphones limits the ability to make eye contact and develop empathy for others. Contemporary apprehensions about mobile communication, and its impact on intimacy and compassion, are not limited to lay experts either. MIT professor Sherry Turkle (whom the New York Times calls “a kind of conscience for the tech world”3) implores her readers to repair their relationships by “reclaiming conversation” from the overpowering grasp of their graspable technologies.4 While there are certainly very real dangers to the pervasiveness of networked mobile communication devices (such as distracted driving while texting and intrusive location-based personal data collection), claims of mobile media’s direct and negative effects on meaningful human connection have not gone unchallenged. Scholars of interpersonal communication and social interaction have repeatedly demonstrated through qualitative and quantitative research that “digital dualism”5—a dichotomy between devalued technological “chatter” and valued human “conversation”—misrepresents the complex bonds that individuals negotiate through and with new media.6 What has been less subject to scrutiny, though, is the way in which “moral panics”7 about mobile media and the demise of conversation privilege oral communication as fundamental to the human experience. For example, writing about the seductive qualities of “machines with voices” (such as Apple’s Siri), Turkle explains that, During our evolution, the only speech we heard was the speech of other humans. Now, with the development of sophisticated artificial speech, we are the first humans asked to distinguish human from non-human speech. Neurologically, we are not set up to do this job.8

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Turkle’s biological argument about the inherent inferiority of technology-based voices is predicated less on a body of empirical research (which actually indicates the contrary)9 and more on a personal belief that there is some universal form of talking and listening that all bodies easily and naturally do. The implicit corollary—that oral communication is independent from technology and learned technique as to be “reclaimed” from it—is similarly open for debate. Anthropologist Joshua Reno argues that “the very idea of language ‘acquisition’ implies that speech is something owned, a property that we comfortably possess, rather than a skill that most, but not all, are equipped for, which requires practice and may involve lifelong struggle.”10 The “unnaturalness” of mediated communication is inherently subjective and dynamic. It is a quality dependent not only on the content and context of human conversation,11 but also on the bodily and cognitive capabilities, at any given moment, of those in dialogue with one another. I reject the idea that mobile communication and authentic human conversation are antithetical, and turn instead to the work of disability studies, which invites us to rethink normative assumptions about embodiment and cognition.12 Critical intersections of disability studies, feminist theory and science and technology studies provide frameworks for understanding how communication technologies constitute and articulate the conversing subject.13 Disability can be an asset to communication theory and an organizing principle for communication studies, intersecting with how queer theory, feminist theory and critical race theory have all strengthened existing formulations about how certain forms of personhood are valued and devalued within sociotechnical systems.14 In this chapter, I highlight the experiences of one group of mobile media users: disabled individuals who are unable to or who have significant difficulty talking and who supplement their capacity for speech through tools and strategies known as augmentative and alternative communication (AAC).15 Individuals with complex communication needs—due to developmental disabilities (e.g. autism), acquired disabilities (e.g. resulting from a stroke) or degenerative disabilities (e.g. amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease)—use AAC systems to augment or provide alternatives to oral speech as a primary (and socially privileged) form of human communication. Though some individuals with significant speech impairments rely more centrally on an array of mobile media and an assemblage of human and non-human resources to “talk,” I suggest subverting the normative structures used to classify human dependency on communication technology in order to better account for the disabled experience as a human one. I argue that all mobile communication technologies in some way augment or serve as an alternative to conversation-asembodied oral speech. I thus propose a theory of mobile communication that situates such usage along a spectrum of communication augmentations and alternatives. This spectrum is wide enough to encompass the sending and receiving of texts with a mobile phone, as well as famed physicist and AAC user Stephen Hawking’s delivery of a typed presentation through a tablet computer mounted to his power wheelchair. Both examples bypass the bodily production of oral speech. I begin by providing an overview of how AAC functions as communication technology in order to highlight how conversation acts expressed through mobile media are inherently distributed across bodies, objects, environments and practices. Next, I advance a theory of mobile media as communication augmentations and alternatives through a contextual analysis of the Oscar-nominated 2014 film, The Theory of Everything.16 The movie chronicles the life of the aforementioned Hawking and is based on the memoir of his ex-wife, Jane Hawking.17 Contextual analysis here allows for consideration of the film within society at large,18 and specifically, societal moral panics around mobile media. The Theory of Everything is the highest profile mass media depiction of AAC to date, and offers multiple entry points for general audiences to understand the discursive construction of disability, ability and mobile communication technologies. 276

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I conclude by suggesting new research approaches in the social study of technology that are opened up by the reframing of mobile media through a theory, not of everything, but of communication augmentations and alternatives.

Defining Augmentative and Alternative Communication “Augmentation” and “alternative” are not fixed categories, and their distinctions are not always clear-cut. Everyone, including those with significant speech impairments, uses a variety of communication forms over a given day. We all pull from a repertoire of methods and a range of tools to fit particular communicative opportunities, which leads to being more or less understood by others. From the clinical perspective of communication sciences and disorders, which focuses on diagnosis and treatment of speech impairments, there are two basic types of AAC systems— unaided and aided.19 This distinction is similar to but different from those made in communication studies between unmediated, mediated and computer-mediated communication. Unaided AAC systems rely exclusively on one’s body to a convey message to another person, and are sometimes referred to as “no-tech” AAC.20 This includes non-spoken language such as smiling or frowning, non-lexical sounds such as laughs or groans and sign language. Aided AAC systems differ from unaided ones because they require the use of tools or equipment beyond one’s body in order to convey messages. This includes digital and non-digital physical objects, as well as other people who physically help to facilitate communication. Aided AAC systems vary in their level of technological complexity.21 “Low-tech” systems are cheap in cost, simple in design and do not require a power source. Examples include pencil and paper, picture- and/or symbol-based communication cards and books, and alphabet boards. Battery-powered “mid-tech” devices can electronically store a few pre-recorded messages. “Hightech” computers permit users to type words or select symbols from a dynamic screen with changing options and convey messages through digitized and/or synthesized speech output. High-tech AAC systems include apps combined with off-the-shelf smartphones and tablets that mimic more complex (and more expensive) speech-generating technologies. Aided AAC systems, such as mobile technologies, are not necessarily digital or computerized, but anything that extends human function for communication. There are two potential ways to select messages within an aided AAC system: direct and indirect selection.22 With indirect selection, there are a number of intermediate steps to go through before the user can select and convey their intended message. One indirect selection technique is a process known as scanning. In scanning, a finite set of possible items (e.g. letters, words) are presented sequentially at an even pace, one at a time. This scanning process can be facilitated by a computer or by another person. Both means present items linearly or cyclically until one is chosen. The speed of the scan can also be increased or decreased. In computerassisted scanning, when the scan stops on the intended message, the user activates an electronic switch to select it and convey the message to others through visual or auditory output from the machine. In partner-assisted scanning, a face-to-face communication partner identifies each item in the set of messages by naming or pointing to it, and waits a length of time for the user to signal via a sound or a movement the item they wish to communicate. In direct selection, there are no such intermediate steps. The individual specifically indicates their desired message without going through additional channels. There are a number of direct selection access methods, or ways for a user to interact with the technology. The choice of access method depends largely on the possible limb movement and motor control of the user. An individual might use their body or a tool attached to their body to access the interface. For example, one might point to a touch screen using their hand (with fingers or knuckles) or foot (with toes). That touching or pointing might also be achieved through a capacitive stylus attached to a long 277

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stick held by the mouth or attached to a hat or headband. Someone with quadriplegia might instead use their mouth to send signals to a communication device using air pressure by inhaling or exhaling though a straw known as a “sip and puff.” Switches mounted on eyeglasses can also detect smaller movements of the cheek and head, which is how Hawking manipulated his hightech AAC system.23 The above overview of AAC systems, message selection techniques and access methods allows us to map a spectrum of communication augmentations and alternatives relative to embodied oral speech. All mobile communication technologies take time, effort, trial, error and practice to master. What makes AAC systems distinct is not that they are used by people with temporary or permanent communication disabilities, but that they generally take more time, repeated effort, waves of trial and error and consistent practice in order to use seamlessly in the speaking world. Effective communication through any mobile device is not only dependent on a user’s own skills and abilities, but also on their conversation partners, who shape the context of communication through a given sociotechnical system.

Developing Communication Theory Through The Theory Of Everything The film The Theory of Everything illustrates how the authenticity of communication, the meaningfulness of conversation and the intimacy of relationships cannot be reduced to the presence or absence of mobile media. AAC systems in the film complicate neat distinctions between face-toface, mediated and computer-mediated communication. While the film presents a highly dramatized version of reality, and Stephen Hawking is certainly not demographically representative of all AAC users (to say nothing of the general populace), the portrayal of Hawking’s use of different aided AAC systems in the years following his ALS diagnosis nonetheless provides useful material for theory building. The film weaves less a professional tale about how Hawking developed his scientific ideas, and more a personal one about the unraveling of a marriage. The first appearance of AAC in the film occurs shortly after Hawking’s emergency tracheotomy following complications from pneumonia. His wife, Jane, comes to visit him in his hospital’s day room, though it is unclear to the viewer how long it has been since the surgery and what kind of communication Stephen and Jane have had since he lost the remainder of his oral speech. His emergency occurred while Jane was on a camping trip with their children and a family friend (and part-time caretaker of Stephen) whom Jane had developed romantic feelings for over the years. Jane enters the room carrying a clear plastic eye-gaze communication board about the size of a cafeteria tray with two small handles and a cutout in the middle (Figure 25.1). Six large circular stickers, each a different color, are affixed to the corners, top and bottom of the board. Within each section designated by the circular stickers are letter stickers, 26 in all for the alphabet. There are also two areas for the words “YES” and “NO.” The letters within each section are color coded in the same clockwise order that the large circular stickers appear on the board—green, yellow, blue, red, black, pink. Jane and Stephen make a first attempt at partner-assisted scanning. She sits down across from him, the board backlit by the light from the windows, and says, This is a Spelling Board. First, you tell me what letter you want by blinking when I say the color of the group that contains that letter. Once I know the group, you can choose the character inside that group by blinking again when I go through the colors of each letter in that group. Apparently. Okay? Let’s just try.24

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Figure 25.1 Jane and Stephen try to communicate with a spelling board. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014).

Instead of “reclaiming conversation” from technology, Jane tries to use mobile media to recover communication partly lost due to Stephen’s disease, and partly due to her budding relationship with another man. This attempt is to no avail, however. The slightly melodramatic stage direction from the film’s shooting script reads, “As Jane’s eyes fill with tears … Stephen just keeps looking at her … then tries to speak. His mouth moves … but nothing—nothing ever again!— will ever come out!”25 While these efforts at using the spelling board fail, a great deal is still communicated non-verbally between the estranged husband and wife, through Jane’s welling eyes and Stephen’s tearful gaze. Over the course of the movie, aided AAC, mobile media and partner-assisted scanning start to symbolize a wall between Stephen and Jane. The technologies and techniques become metaphors for diminishing intimacy between the two, and growing intimacy between Stephen and his nurse, Elaine Mason. Immediately following the hospital scene, Stephen has returned to his home, where Jane escorts Elaine upstairs to meet him for the first time. Immediately, Stephen and Elaine have an easy rapport in using the spelling board together (Figure 25.2). In fact, they quickly put the board aside, each having memorized the correspondence between letters and colors. With the physical technology removed, the technique remains; without the board between them, Elaine leans in closer and Stephen grins wider. Jane grows uncomfortable with Elaine’s increasingly central role in her husband’s communication system and in his life. If she wants to talk with Stephen, Jane must go through a woman whom she considers a rival for his attention and affection. When Stephen upgrades to a state-ofthe-art, computer-assisted scanning AAC system with synthetic speech output, Jane and Elaine’s differing opinions on the American accent of the synthetic voice reflect this tension. Elaine is supportive of the accent, while Jane inquires with the engineer outfitting the machine if it can be changed. Stephen sits between them, physically and symbolically. Ultimately, Stephen uses his mobile AAC system to tell Jane that he has decided that Elaine will be accompanying him on an upcoming trip to America instead of her (Figure 25.3). He uses his switch interface to type out the words on his personal computer, and then pauses a few seconds before converting them to synthetic speech output so that Jane can hear them from across the room. This declaration splits their relationship in half, and marks time into before and after the utterance. Jane tells Stephen tearfully, “I have loved you. I did my best.” Not only have Jane and Stephen been unsuccessful communication partners through mobile technology, but it also facilitates their uncoupling as partners in marriage.

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Figure 25.2 Stephen looks longingly at Elaine through the spelling board. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014).

Figure 25.3 Stephen tells Jane that she will not be accompanying him overseas using his mobile AAC system. Screenshot from The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014).

Clear divisions between face-to-face and mediated communication easily blur upon a close reading of how Stephen and Jane fight, and concurrently, how Stephen and Elaine flirt. Stephen speaks through his AAC systems in ways that are simultaneously face-to-face (in terms of being copresent with another person), board-to-face (conversing with another through partner-assisted scanning) and screen-to-face (using his high-tech AAC device to converse with an individual who does not communicate with an AAC device). He does not speak with another AAC user in the movie, but if he had, that would add a dimension of screen-to-screen communication. Screen-based mobile media do not get in the way of Stephen and Jane’s relationship, nor is his inability to produce embodied oral speech the cause of their divorce. Rather, the film rhetorically employs various forms of AAC—the spelling board, the synthetic voice and the wheelchair-mounted computer—to tell a story about two people simply no longer being on the same page.

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Communication Augmentations and Alternatives Tracing human connection and disconnection in The Theory of Everything reveals a great deal about the multimodal use of communication technologies. It demonstrates the value of recentering mobile communication theory in response to, rather than in spite of, augmentative and alternative communication systems. Those with complex communication needs can only be considered “exceptional” or “outliers” in their use of mobile technologies relative to the ability to produce embodied oral speech. There are three tenets of a mobile media-ascommunication augmentations and alternatives perspective that The Theory of Everything is particularly adept at illustrating. First, the film shows that distinguishing AAC from mobile media, and AAC users from mobile users, is a matter of degree rather than difference. Second, it highlights the somewhat paradoxical role of oral speech within communication systems that purport to supplement or replace talking. Third, the movie draws attention to the limitations of digital dualism, particularly oft-repeated tropes about impaired eye contact and diminished empathy due to mobile media.

Degree and Difference While Hawking relies on a complex arrangement of electronic and non-electronic forms of media to enable his social participation, the International Society for Augmentative and Alternative Communication (ISAAC) emphasizes the universality of augmentative and alternative communication for all people, not just those with impaired speech. ISAAC explains that “whenever something constrains the effectiveness of our spoken language we will use an augmentative form. Therefore the use of AAC is a question of degree rather than difference” [emphasis added].26 Any number of factors can constrain a person’s ability to communicate solely through spoken language. ISAAC provides the example of a person trying to communicate with a friend getting a drink at the other end of a long, loud and darkly lit bar.27 One might wave their hand (as a form of unaided AAC) to get their friend’s attention. Texting (as a form of aided AAC) would be a more efficient and accurate communication form for conveying one’s drink order to the friend than whispering or yelling it across the bar. Whatever one’s chosen methods of communication augmentations and alternatives, they vary based on current abilities, environmental factors, the individual or group with whom one is communicating and the social norms of one’s culture. Individuals with and without communication disabilities also similarly supplant or supplement traditional “talk” by using popular forms of social media and mediated forms of “chat” (e.g. Google Chat, Snapchat). Autistic blogger Sara Luterman contends that: Social media and smartphones are just a form of augmentative and alternative communication (AAC). Clicking the “like” button on Facebook is no different than clicking the “like” button on a speech generation device. The different [sic] is how many people can hear what you have to say.28 Recent revisions to Medicare coverage for AAC devices in the United States reflect this growing awareness that social media are networked forms of AAC. Policy changes in July 2015 have led to medical insurance coverage of high-tech AAC systems that primarily function as speechgenerating devices but can also serve as networked mobile communication technologies.29 A theory of mobile media as communication augmentations and alternatives incorporates an emphasis on degree over difference not only in terms of media users, but also platforms.

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Paradox of Oral Speech Technological systems that augment or provide alternatives to oral speech do not function entirely outside of spoken language systems. Mobile users receive messages through their phones or ask Siri for directions, which shapes the face-to-face conversations they are having. While technologies provide Stephen with opportunities for connection and conversation, they also directly and indirectly augment Jane and Elaine’s own communication. The two use the spelling board to talk with Stephen; used in tandem with their embodied oral speech, the board directly augments their communication too. Jane and Elaine are also indirectly implicated in communication with the device (for example, what sentence Stephen chooses to type next), and thus socially construct reality through communicative acts with Stephen. AAC systems augment and serve as alternatives to embodied oral speech, but human and machine voices are still drawn upon as resources in various ways.

Digital Dualism The role of eye contact in The Theory of Everything also complicates normative models and individualist assumptions concerning conversation, empathy and mobile communication. Instead of mobile media being a distraction from meaningful eye contact, alphabet boards (as a kind of mobile media) operate in concert with eye contact and gaze. Together, Elaine and Stephen create shared meanings and use partner-assisted communication as a kind of predictive text. For example, after Stephen selects the letter “B” from the spelling board, Elaine understands that he would like to drink builder’s tea (tea with milk and sugar). Rather than using machine learning (e.g. autocomplete in word processing software), this kind of message prediction entails human learning. Instead of typed input, an algorithm and computer memory, partner-assisted scanning involves head and eye movement (e.g. looking, blinking); the partner building trust by remembering the user’s tastes, preferences and frequently used language; and the cultural and social context of the communicative act. Eye contact is an integral rather than extrinsic part of Hawking’s mobile communication. It should also be noted that screen-based communication can be an important alternative and augmentation to face-to-face communication for individuals with various disabilities. The moral privileging of looking someone in the eye compared to looking at a screen ignores the needs of those with sensory processing issues for whom direct eye contact can be overstimulating. Autistic adults and children also report valuing the opportunity to find those with shared experiences and common interests online without stigmatization or bullying.30 The opportunity to expand modes of response through mobile media is something that those with and without disabilities often enjoy as an augmentation or alternative to face-to-face communication.

Conclusion This chapter has tackled the relatively understudied convergence of disability, mobile media and interpersonal communication. Through a contextual analysis of the acclaimed Stephen Hawking biopic The Theory of Everything, I have illustrated how AAC technologies are mobile communication tools, with their capacity for mobility and communication shifting dramatically within the past few decades. When we consider AAC systems as such, I argue that this allows us to reorient our understanding of human expression through mobile devices as existing along a spectrum between communication augmentations and communication alternatives to embodied oral speech. Why then, we might ask, is it more socially stigmatizing for a disabled person to use a stick mounted on their head to press keys on a keyboard hands-free and less stigmatizing for a non-disabled person to employ a selfie stick to take a photograph without directly touching the phone’s button? Both exist along a spectrum of communication augmentations and alternatives.

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New theoretical concepts such as communication augmentations and alternatives are needed in media and communication studies in order to describe the complex relationship between technology, sociality and embodiment in contemporary sociotechnical systems. Multimodal augmentative and alternative communication systems disrupt the notion that computer-mediated communication and face-to-face communication are entirely distinct. Communication scholars might take up the question of how augmentations and alternatives to embodied oral speech are imagined as affordances in computer–human interaction, particularly in light of current development in pervasive computing and “smart” innovations.31 What social, material and affective factors, for example, shape how a child perceives the authenticity of their conversations with Hello Barbie, Mattel’s foray into artificially intelligent talking dolls?32 Communication augmentations and alternatives offer mobile communication technology scholars a framework for studying the gaps between the spoken and unspoken, the rational and emotional, the strategic and affective. In Reclaiming Conversation, Turkle writes that “we are being silenced by our technologies—in a way, ‘cured of talking’”;33 in turn, she offers “a talking cure.”34 Such talk of cures though incorporate illness and communication impairment only as a metaphor and is reductive of the human experience. It is not that Turkle and others who extol the virtues of face-to-face communication are ableist, but they are reproducing a false hierarchy. As Luterman explains, “People who oppose the use of screens aren’t trying to silence disabled people. The problem is that they aren’t thinking about us at all.”35 Future empirical work on mobile technology, mediated communication and interpersonal relationships must move conversation about disability from the abstract to the concrete, to truly be in conversation with disabled individuals themselves. It is important not only to study media artifacts about disability and technology but also engage openly with those with communication disabilities themselves.36 This includes how they come to understand the role of technology in their lives, the conditions under which this relationship varies, and how it changes over time. Reorienting mobile media research and turning towards critical disability studies requires more humane and expansive approaches to the study of mediated human conversation, and communication theories that better account for the lived experiences of individuals with complex communication needs.

Notes 1 John Durham Peters, Speaking Into the Air: A History of the Idea of Communication (Chicago: University of Chicago Press, 1999); Ian Hutchby, Conversation and Technology: From the Telephone to the Internet (Cambridge, UK: Polity, 2001). 2 Paul du Gay, Stuart Hall, Linda Janes, Hugh McKay, Keith Negus and Anders Koed Madsen, Doing Cultural Studies: The Story of the Sony Walkman, 2nd ed. (Thousand Oaks, CA: Sage, 2013); Jason Farman, “The Forgotten Kaleidoscope Craze in Victorian England,” Atlas Obscura, November 9, 2015, www.atlas obscura.com/articles/the-forgotten-kaleidoscope-craze-in-victorian-england. 3 Jonathan Franzen, “Left to Our Own Devices,” International New York Times, October 3, 2015, 22. 4 Sherry Turkle, Reclaiming Conversation: The Power of Talk in a Digital Age (New York: Penguin Press, 2015). 5 Nathan Jurgenson, “Digital Dualism versus Augmented Reality,” Cyborgology, February 24, 2011, http:// thesocietypages.org/cyborgology/2011/02/24/digital-dualism-versus-augmented-reality. 6 Nancy Baym, Personal Connections in the Digital Age, 2nd ed. (Cambridge, MA: Polity, 2015). 7 Stanley Cohen, Folk Devils and Moral Panics (London, UK: MacGibbon & Kee, 1972). 8 Turkle, Reclaiming Conversation, 342. 9 Clifford Nass and Scott Brave, Wired for Speech: How Voice Activates and Advances the Human-Computer Relationship (Cambridge, MA: MIT Press, 2005). 10 Joshua Reno, “Technically Speaking: On Equipping and Evaluating ‘Unnatural’ Language Learners,” American Anthropologist 114 (2012): 407. 11 James Carey, “A Cultural Approach to Communication,” in Communication as Culture: Essays on Media and Society (New York: Routledge, 1989): 13–36.

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12 Tobin Siebers, Disability Theory (Ann Arbor: University of Michigan Press, 2008). 13 Hélène Mialet, Hawking Incorporated: Stephen Hawking and the Anthropology of the Knowing Subject (Chicago: University of Chicago Press, 2012); Mara Mills, “Media and Prosthesis: The Vocoder, the Artificial Larynx, and the History of Signal Processing,” Qui Parle: Critical Humanities and Social Sciences 21 (2012): 107–149; Ingunn Moser and John Law, “‘Making Voices’: New Media Technologies, Disabilities, and Articulation,” in Digital Media Revisited: Theoretical and Conceptual Innovations in Digital Domains, ed. Gunnar Liestol, Andrew Morrison and Terje Rasmussen (Cambridge, MA: MIT Press, 2003), 491–520. 14 Meryl Alper, Katie Ellis and Gerard Goggin, “Reimagining the Good Life with Disability: Communication, New Technology, and Humane Connections,” in Communication and the “Good Life,” International Communication Association Theme Book Series, Vol. 2, ed. Helen Hua Wang (New York: Peter Lang, 2015): 197–212. 15 David Beukelman and Pat Mirenda, Augmentative and Alternative Communication: Supporting Children and Adults with Complex Communication Needs, 4th ed. (Baltimore, MD: Brookes Publishing, 2013). 16 Anthony McCarten, The Theory of Everything, directed by James Marsh (London, UK: Working Title Films, 2014), DVD. 17 Jane Hawking, Travelling to Infinity: My Life with Stephen (Surrey, UK: Alma Books, 2007). 18 Barbara Klinger, “Film History Terminable and Interminable: Recovering the Past in Reception Studies,” Screen 38 (1997): 107–128. 19 Bronwyn Hemsley, Kaely Bastock and Paul Andres, ISAAC Glossary of Terms and Definitions for AAC (Toronto, ON: International Society for Augmentative and Alternative Communication, 2010), https://isaa caustralia.files.wordpress.com/2013/03/isaac-glossary-of-terms-and-definitions-for-aac-revised-18-03-2013.pdf. 20 Hemsley et al., ISAAC Glossary. 21 Beukelman and Mirenda, Augmentative and Alternative Communication. 22 Beukelman and Mirenda, Augmentative and Alternative Communication. 23 Stephen Hawking, “The Computer,” accessed April 4, 2016,www.hawking.org.uk/the-computer.html. 24 Anthony McCarten, The Theory of Everything, Shooting script, November 2013: 73, http://focusguilds2014. com/workspace/media/the-theory-of-everything-screenplay.pdf. 25 McCarten, The Theory of Everything. 26 “Communication Methods” (Toronto, ON: International Society for Augmentative and Alternative Communication), accessed May 8, 2017, www.isaac-online.org/english/what-is-aac/what-is-communication/ communication-methods. 27 “Communication Methods.” 28 Sara Luterman, “Screen Backlash Is a Disability Issue,” NOS Magazine, October 2, 2015, http://nosmag. org/screen-backlash-is-a-disability-issue. 29 Subash Duggirala, “Speech Generating Devices” (Washington, DC: Centers for Medicare and Medicaid Coverage, 2014), www.cms.gov/medicare-coverage-database/details/medicare-coverage-document-details. aspx?MCDId=26. 30 Kathryn Ringland, Christine T. Wolf, Lynn Dombrowski and Gillian R. Hayes, “Making ‘Safe’: Community-Centered Practices in a Virtual World Dedicated to Children with Autism” (paper presented at the 18th ACM Conference on Computer-Supported Cooperative Work and Social Computing, Vancouver, BC, Canada, March 14–18, 2015); Steve Silberman, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (New York: Random House, 2015). 31 Peter Nagy and Gina Neff, “Imagined Affordance: Reconstructing a Keyword for Communication Theory,” Social Media + Society 1 (2015). 32 James Vlahos, “Barbie Wants to Get to Know Your Child,” New York Times Magazine, September 16, 2015, www.nytimes.com/2015/09/20/magazine/barbie-wants-to-get-to-know-your-child.html. 33 Turkle, Reclaiming Conversation, 9. 34 Turkle, Reclaiming Conversation, 9. 35 Luterman, “Screen Backlash Is a Disability Issue.” 36 Meryl Alper and Beth Haller, “Social Media Use and Mediated Sociality Among Individuals with Communication Disabilities in the Digital Age,” in Disability and Social Media: Global Perspectives, ed. Katie Ellis and Mike Kent (Farnham, UK: Ashgate, 2016): 133–145; Jessica Caron and Janice Light, “Social Media Has Opened a World of ‘Open Communication’: Experiences of Adults with Cerebral Palsy Who Use Augmentative and Alternative Communication and Social Media,” Augmentative and Alternative Communication 32, no. 1 (2016): 25–40.

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26 MOBILE PHONES AND VISUAL IMPAIRMENT IN SOUTH AFRICA Experiences from a Small Town Lorenzo Dalvit

The relationship between technological development and social change has been explored in depth and across many different domains. Innovation, understood in a broad sense, captures how technology contributes to determine what is possible and is in turn appropriated and shaped by users.1 As an example, mobile phones, which are designed with sighted people in mind,2 pose particular challenges to visually impaired users due to their small on-screen keyboards,3 tiny text, etc.4 However, mobile technology is increasingly part of the lives of disabled people5 and can improve the life of users with hearing, motory and visual impairments.6 The ubiquity of mobile devices introduces power dynamics along the lines of inclusion/exclusion, agency/acceptance and dependence/independence. In South Africa, there are more active SIM cards than people and smartphone penetration is estimated to be at about 34 percent.7 Mobile penetration, however, is not uniform across the South African population. The cost of mobile communication (and data in particular) is very high in South Africa.8 This is problematic as the Internet experience of members of marginalized communities is mobile-first, mobilecentric and often mobile-only.9 As noted by Goldstuck, members of marginalized communities might not even be aware of the full capabilities of their devices and, once they have access to broadband, could take up to five years to become full online participants.10 This process is particularly taxing for visually impaired users who have to undergo a steep learning curve and rely on family and friends for assistance.11

Disability in South Africa Under Apartheid,12 disabled people were systematically discriminated against.13 The Bill of Rights (1996) explicitly condemns discrimination on the basis, inter alia, of gender, race, language and disability.14 The National Policy on Disability emphasizes the importance of a holistic approach to promote the independence of people living with disability.15 Disabled people receive a monthly grant of approximately ZAR 1,420 (AUD 135).16 The Department of Social Development’s policy recognizes the need to provide mobility devices such as wheelchairs, white canes, etc. but no mention is made of mobile phones. The first periodic country report to the United Nations on the implementation of the Convention on the Rights of Persons with Disabilities in 285

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South Africa notes that, “Despite positive trends in participation rates and access to services, the intended outcomes for the majority of persons with disabilities in South Africa have not been achieved … especially regarding education and employment.”17 A number of special needs schools exist to cater for various types of disability. For example, Athlone School for the Blind in Bellville near Cape Town attracts students from the rest of the country and sub-Saharan Africa. This means that visually impaired people, especially those living in small towns and rural areas, have to move away from their family in order to receive an education. South Africa was ranked 119 on the 2015 Human Development Index and is characterized by social inequalities, high crime rates and linguistic as well as cultural diversity (for example, 11 languages are recognized as official and only a relatively small portion of the population is fluent in English).18 Approximately 7.5 percent of the South African population is classified as disabled and visual impairment is the most prevalent reason according to the data gathered by Statistics South Africa.19 Disabled people are over-represented among females, non-whites and the poor. The attention of the public is drawn to disability on September 2 each year for Casual Day. Everybody is encouraged to dress casual and buy stickers to support non-profit organizations (NPOs) working with disabled people.20 In the press, the main publication dedicated to covering disability issues is the Thisability newspaper. The newspaper strives to provide information on disabilities as well as giving a voice to people living with disabilities and their caregivers.21 On TV, a short documentary series titled Against All Odds features people (many of whom are disabled) who achieve success by overcoming their limitations. Such representation of disabled people as heroes or victims has often been criticized in the critical disabilities studies literature.22 The prominent case of runner Oscar Pistorius provides insights into the complexity of representations of disability in the media and in popular culture, from the role of “supercrip” to his downfall.23 Another story that achieved global resonance is that of Thamsanqa Jantjie, who faked signlanguage interpreting at the memorial service for former president Nelson Mandela.24 Popular outrage ensued at his disrespect for the deaf community, while Jantjie’s own history of mental illness, which led him to faking his qualifications as a sign-language interpreter and to hallucinating on stage, was overlooked. Disabled people rarely feature as prominent voices in the media, with notable exceptions such as TV presenter Rhulani Baloyi of the program Shift. Accessibility in traditional media is limited. Open captions are provided for local TV programs but only in English, even though the programs are broadcast in multiple languages. Only deaf viewers who are sufficiently fluent in English benefit from this. A sign-language version of the news exists on public broadcaster SABC 1. No provision is made for blind TV viewers and audio descriptions of videos are not provided either by the public broadcaster or by commercial satellite TV. For the portion of the population who have access to the Internet, daily news in English and Afrikaans as well as accessible videos through YouTube and Netflix (via subscription) are available. A disability divide runs alongside a digital and linguistic one. The concept of digital inequalities captures the two-way relationship between unequal access to information and communications technology (ICT) and social exclusion and can be critically applied to emphasize the centrality of individual experiences and contextual experiences.25 International research suggests that even if demographic variables (for example, socio-economic status, age, ethnicity, level of education, etc.) are taken into account, digital inequalities in terms of technical access as well as skills, autonomy of use and purpose of online activities exist between different categories of disabled people and with the rest of the population.26 As an example, visually impaired people appear to face particular challenges accessing the Internet due to the general practice of implementing accessibility features as an afterthought and not as part of Web design. Decreasing prices are bringing entry-level smartphones within the reach of an increasing number of South Africans. 286

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Besides issues of cost, disabled people face epistemological challenges to access due to generally low levels of literacy, English proficiency and general awareness of the potential of technology to address visual impairment. Text-to-speech (TTS)27 for African languages is still in its infancy and is not at the disposal of the general public for major platforms, leaving many visually impaired people who are not proficient in either English or Afrikaans stranded. These are also the two main languages used in a set of email address lists maintained by the Council for Scientific and Industrial Research (CSIR) under the heading National Accessibility Portal.28 Separate lists cater for different disabilities (deaf, blind, deaf-blind, motory, etc.) but only the one for visually impaired people seems to be active and in fact generates a lot of traffic. Discussions often relate to context-specific issues such as the accessibility of mobile apps for different South African banks as well as general topics including jokes and entertainment. The names on the email address list for blind people suggest that users are mainly white and possibly colored.29 While affluent visually impaired people have the necessary resources and sociocultural capital to tap into this form of support, members of marginalized communities—particularly in small towns and rural areas— have to rely on personal networks and local organizations.

Being Visually Impaired in a Small South African Town Grahamstown is a small town in the Eastern Cape Province of South Africa. Although it is the only town in the country where the main sector of economic activity is education (being home to several prestigious boarding schools) visually impaired inhabitants have to move somewhere else to study. In other respects, Grahamstown can be considered a microcosm of South Africa. While the historically white center, where most economic activity takes place, is becoming increasingly multi-racial, most Africans and coloreds still live in townships.30 The Grahamstown context poses specific challenges. The electricity, water and road infrastructure is poorly maintained, leading to frequent blackouts (beyond scheduled outages due to a nation-wide electricity crisis). There is frequent flooding of streets due to burst pipes as well as water outages, potholes and road works that are not always well signaled. The cultural, linguistic and socio-economic differences present in Grahamstown influence the experience of visually impaired people. The rest of this chapter presents and discusses a set of qualitative studies into the experiences of visually impaired users of mobile phones from either one of three different spheres: 1. Town: Grahamstown hosts the National Library for the Blind (NLB). This prestigious institution relies on specialized recorders and shipping of audio books via mail to blind and visually impaired people all over the country. It also works on the transcription of books into Braille31 and offers courses to volunteers. The NLB is located in the center of town, which was previously reserved for white people. Although institutionalized segregation is long gone, people who would have previously been classified as “blacks” still associate this space with white privilege and feel intimidated by it. The NLB has access to a pool of approximately 50 visually impaired Grahamstown residents, many of whom are elderly people. Despite repeated contacts, it was difficult to engage them as research participants. 2. Township: Until recently, the Grahamstown Area Distress Relief Association (GADRA) managed, inter alia, a space where visually impaired people from the township could meet, use a dedicated computer lab, learn Braille, etc. This proved to be an excellent place to contact potential research participants. Unfortunately GADRA shut down in 2015 due to financial constraints. 3. Campus: Rhodes University is a small (6,500 students) campus institution. It is historically white and relatively affluent. It is the largest employer in Grahamstown. The disability policy 287

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is under review at the time of writing and a disability task team has recently been upgraded to a permanent committee of the Academic Senate. Visually impaired staff and students are supported through different mechanisms. The small size of the university lends itself to the provision of ad hoc assistance based on individual initiative and personal commitment. Stringent rules for the protection of privacy make it difficult to contact visually impaired staff and students through official university channels and records. Some participants were included through personal contact. In 2014 an exploratory investigation focused on the instrumental uses of mobile-phone technology.32 A focus group was conducted with ten visually impaired individuals contacted through GADRA. Starting from a scenarios approach, understandings of mobile phone uses were categorized into four themes: inter-personal communication; contacting authorities during an emergency; giving receiving direction; and accessing services. All participants felt they could not leave the house without their mobile phone. The main reasons were the need for ubiquitous communication as well as access to some services (for example, “call GADRA to find out about programs offered”; GADRA logistics (for example, “give directions to people/drivers”) and security (for example, “call authorities during an emergency”). The issue of security posed the main challenge in using a mobile phone in public places. Visually impaired people felt that their disability made them easy targets for would-be criminals. In 2015, a study involving ten semi-structured interviews with visually impaired people from different socio-economic backgrounds highlighted significant differences.33 It aimed at answering three questions about mobile-phone innovation: 1. How visually impaired people cope with technological innovation: The arrival on the market of phones with a touch screen introduced a number of significant challenges for visually impaired users.34 Even those respondents who could afford new smartphones tried to hold on to older devices with physical keypads and QWERTY keyboards.35 After a steep learning curve, those with smartphones learned to use them with the help of a screen reader. One of the participants noted that navigating a touch screen requires spatial ability, which introduces a distinction between those blind since birth and those who lost their sight later in life. 2. How visually impaired people use their mobile phone to overcome their physical impairment: Participants use a screen reader to access news websites such as news24.com and to read eBooks using apps such as 3MT eBook reader, iBooks, etc. With regard to the latter, the use of certain formats and digital rights management (DRM) protection hinders full access. Participants who use smartphones often use navigation apps such as GPS maps like TomTom and pointFinder, Google Maps and iMaps. These services are not always available or accurate due to local limitations (for example, when trying to use public transport) or limited accuracy of satellite coordinates. Participants are active on social media and are familiar with websites and mailing lists specifically dealing with issues affecting visually impaired people, such as the ones on the National Accessibility Portal mentioned above. 3. How visually impaired people renegotiate dependence/independence through the use of technology: For users of feature phones and smartphones alike, mobile devices allow visually impaired people to keep in contact with friends and family and to ask for assistance if needed. The enhanced security deriving from this was often cited as this is a particular concern in South Africa.36 All respondents recognized being completely dependent on their mobile phone. More advanced models with screen readers increased independence by making it possible to check and manage bank accounts, private messages and other sensitive information, at least when in a private space. To discover new features and services, those with lower socio-economic status relied on friends, family and other visually impaired people while more affluent 288

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participants sought information online.As part of their Master’s course in digital media, students in the School of Journalism and Media Studies at Rhodes University collected a series of narratives of how Grahamstown residents use their phones. This confirmed some common trends, for example, a concern for high levels of crime, poor maintenance of roads that made them difficult to navigate with a white cane and the high costs associated with mobile communication. They also highlighted the profoundly different experiences of people in town, compared to those in the township and those on campus. One participant representing each group has been selected and his or her experience is discussed below.

The Town Experience Paula is a white woman in her early forties and works at the National Library for the Blind as a Braille consultant. She has been visually impaired since birth but with some residual vision. She is relatively independent thanks to the assistance of her guide dog. She recently moved from a home not far from the center to an even more central location, literally one street away from her workplace. Paula claims to be a technology enthusiast and notes that the combination of mobile TTS technology and Braille is “a powerhouse.” She owns an iPad and an iPhone 5s and has computers at home and work. She is relatively knowledgeable about mobile phones and is enthusiastic about the iOS in-built accessibility features. In her opinion, other phones require the purchase of additional screen-reading software at a cost of between ZAR 2,000 to ZAR 3,000 (AUD 190 to AUD 284). She is on contract and chose her current phone based on positive reviews and suggestions by other visually impaired people. Her previous phone was a Nokia N71 with a QWERTY keyboard that she liked very much. She resisted the transition to a touchscreen phone but was forced to upgrade when her old phone was stolen. She was initially intimidated by the touch screen as she was afraid of making mistakes she would not be able to undo. She relies on her husband for encouragement to discover features and for help in downloading and running apps that are not accessible to the visually impaired. Paula uses her phone mainly to contact people. As an example, she calls the local pharmacy to order prescriptions for her sick husband, then goes to fetch them. She also records notes and reminders using voice recording. This is much more practical than Braille as her phone is always with her and readily at hand. She listens to books and audio books as well as music, which are present wherever she is. One of the most interesting uses of her phone is taking pictures, for which she relies on her residual vision. During the arts festival that takes place every year in Grahamstown, she displayed and managed to sell some of her photos. She noted the personal nature of mobile phones and claimed she would be lost without it. She travels a lot for work, she cited the example of being at the airport in nearby Port Elizabeth and needing a phone to call the shuttle but also to locate the contact person to fetch her as she would not be able to identify landmarks or explain her position.

The Township Experience Francis is a black man in his mid-fifties and his main source of income is a government grant. He became totally blind at the age of ten due to unknown causes. After being forced to leave the mainstream school system he studied at various schools for the blind in Cape Town and Johannesburg and qualified as a switchboard operator. He came back to Grahamstown, where he was born, to “plough back” his knowledge and until recently he volunteered as a braille trainer at GADRA. He lives in the township and commutes regularly to town for shopping and to the GADRA premises. 289

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He claims to use his phone “like everybody else.” He owns a low-end mobile device with physical buttons as well as a touch screen. He specifically chose this phone because of its screenreading capabilities. He uses it mainly to make and receive calls. When receiving a call, the phone reads out the name of the caller. Like many black people, Francis uses public transport and notes the challenge of hearing the caller’s name in a noisy and crowded minivan (termed a taxi in South Africa). A second challenge is understanding SMS or other text written in his mother tongue (isiXhosa, which is widely spoken in Grahamstown) when read out with the English TTS voice. Initially this forced him to rely on a sighted friend for reading messages, which infringed on his privacy. Despite a common perception that African cultures are communitarian and gregarious, control of private information especially regarding money is perceived as very important. He subsequently devised an ingenious (albeit time-consuming) strategy to get around this problem, i.e. moving with the arrows and getting the TTS to spell letter by letter. He is present on social media but faced a particular problem with WhatsApp, as the TTS did not work. Thanks to the assistance of a partially sighted friend, he learned to copy and paste messages into an accessible application where he could get the system to read them. Francis would feel lost without his phone and said he feels very uncomfortable when he does not have it. In fact he keeps constant check of the battery level for fear of running out. The cost of mobile devices and communication is a major problem for underprivileged blind people like him. He feels that, despite their material conditions, blind people want to have modern and popular phones like everybody else. Considering their role as mobility devices, Francis wishes the government would subsidize phones for disabled people. Institutions such as Rhodes University could contribute to the development and dissemination of TTS technology in African languages and of mobile literacy skills.

The Campus Experience Leonard is a 40-year-old foreigner who spent most of his adult life in Grahamstown. He experienced Rhodes University as a student and now as a lecturer. He conducts research into access to ICT for members of marginalized communities (including disabled people) and serves on the Disability Committee. Since the age of 12 he progressively lost his sight and has now limited vision left. He has always been interested in technology, learning programming at an early age and now researching and teaching around mobile technology and social change. As his sight deteriorated accessibility features such as screen readers and optical character recognition improved, making it possible for him to complete his studies within the mainstream system. He lives off-campus and depends completely on digital technology to continue working and on his wife and students for mobility, as he is still in the process of acquiring a guide dog and learning to use a white cane. After some experiences with Android phones and tablets, he now uses almost exclusively iOS devices. Once he borrowed his daughter’s low-end Android device and the lack of responsiveness of the touch screen made the screen reader unusable. Being bilingual, he finds the possibility of switching between the voices in English and Italian (his mother tongue) with just one gesture in iOS particularly useful. Until recently he used an iPad in combination with a Bluetooth keyboard as his main productivity device, relying on a computer only to edit and comment on long text documents and to create presentations. As his sight deteriorated, his iPhone replaced the iPad as the main device to read books and academic articles. Typing with an accessible on-screen keyboard is clumsy and time consuming. As somebody working in the ICT field, he is worried this might impact negatively on the way he is perceived by colleagues and students. He had experience watching movies with video descriptions on YouTube and negotiating familiar places with apps such as a navigator and an app converting images into sounds before. He overcomes issues of privacy and disturbing other people with the TTS voice by using a Bluetooth headset. He 290

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would not use his phone for navigation when walking in town for fear of being victimized. A few years ago he was attacked by two young people who demanded his phone. When he replied, as was the case at that time, that he did not own one and reversed his pockets to prove it, the thieves were so surprised they just let him go. Leonard relies on his phone extensively to coordinate lifts and liaise with his accompanying person (often even within the same venue, for example, during functions). He discovers new features by trial and error through web searches. Leonard depends on his phone for work, leisure, logistics and safety. As a staff member, the university accommodated his condition in many ways, including the use of accessible technology. He is a reference point for the Rhodes community in matters relating to technology and visual impairment and affected staff and students often turn to him for advice. A blind student once asked him to mediate the use of scholarship funds to purchase an accessible mobile phone. Colleagues with blind relatives seek advice on which device to buy and how to make it accessible. These contacts and his personal experience of empowerment and dependency through technology informed his academic work on the social impact of technology.

Reflections and Discussion This chapter provides some context and summarizes the findings of several research projects I coordinated, supervised or undertook relating to mobile-phone use by visually impaired people in Grahamstown. I included my own experience as the last account and, for consistency’s sake, used a pseudonym and referred to myself as Leonard. I was not involved in data collection as my personal relationship with some of the participants would have introduced a bias. I regard this methodological choice as justifiable due to the small-town character of this particular setting. My reflections as lead investigator as well as participant are discussed in this section. The use of smartphones goes beyond the normalization of cultural practices such as reading the news, posting on social networks, etc. They enable independent participation by disabled people as unobtrusive assistive devices and as popular symbols of social inclusion. Through their interaction with mobile technology, visually impaired people in Grahamstown are either empowered or disempowered with respect to autonomy, privacy, security and social participation. While promoting independence in some domains (particularly in private spaces), mobile phones create new patterns of dependence on the device itself as well as on friends and family to operate the device. This in turn raises privacy concerns, which in a town where “everybody knows everybody” are particularly important. High levels of crime are a common concern in South Africa. Being visually impaired makes a mobile-phone user an easy target. In Grahamstown, phone theft, often associated with some measure or threat of violence, is quite common. Not surprisingly, a key finding of the research is that the extent to which visually impaired people in Grahamstown have access to mobile phones and are empowered by this new technology depends on their socio-economic background. As part of the persistent legacy of apartheid, this is inextricably linked to ethnic identity, place of residence, home language, level and quality of education, etc. This is exemplified by the comparison between Leonard’s easy switch to the Italian voice of the iPhone screen reader and the spelling work-around when Francis has to cope with isiXhosa text.37 The case of phone theft provides another example. While contract subscribers like Paula are covered by insurance and can just take out a new phone, and so can risk using a new phone in public, for many township dwellers the phone is their most valuable possession and replacing it amounts to half their monthly income. Regardless of their socio-economic background, this chapter shows how mobile phones possess instrumental as well as symbolic value for all participants. The importance of the mobile phone for social inclusion cannot be overestimated as it allows one to access information and social media. A phone with a screen reader is however a marker of disability. Participants devised 291

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strategies to cope with this (for example, by using a Bluetooth headset) as well as other limitations (for example, spelling letter by letter when reading text in an African language).

Conclusions and Recommendations Progress in mobile-related technologies promises to respond to specific challenges of the South African context. For example, human language technology (HLT) and particularly TTS voices in African languages are already available and should be made widely accessible to speakers of such languages. Improvements in location-based services (LBS) through increased GPS accuracy, crowdsourcing of points of interest and dedicated applications could greatly improve navigation and mediate the relationship between blind and visually impaired people and their immediate surroundings. Converged solutions to deliver audio descriptions of TV broadcasts via mobile phone could also be explored. Access to DRM-protected material for visually impaired people is a global issue and people in developing countries like South Africa are particularly affected. The experiences discussed in this chapter suggest that mobile phones should be recognized as assistive devices for visually impaired people. The Department of Social Development could contribute to subsidizing the purchase of smartphones and data by individuals from a low socioeconomic background. The Department of Basic Education could explore the provision of mobile devices to blind and visually impaired students who wish to attend mainstream schools in their hometown, as an alternative to the specialized boarding school model. NPOs focusing on disability could provide education on how to use accessibility features and how to choose a mobile device. Spaces and scenarios for mobile-phone use (for example, in relation to crime) emerged as interesting topics for future research. Besides the obvious differences in socio-economic status, ethnicity and culture that characterize South African society, personal histories and progression of one’s condition are also worthy of investigation in relation to mobile use and the acquisition of mobile literacy. Innovations, work-arounds and other forms of domestication should be documented and widely shared as they highlight the resourcefulness of blind users without entrenching the hero/victim paradigm.

Acknowledgments The work discussed here was undertaken with the support of the MTN Chair of Media and Mobile Communication at Rhodes University and of the HSD programme of the National Research Foundation. I would also like to thank the National Library for the Blind and GADRA Advice for their support. Special thanks to all the participants as well as the following students in the School of Journalism and Media Studies at Rhodes University: Sally Kumwenda, Chitalu Mwanakatwe, Mfundiso Miya, Tatenda Chatikobo, Francis Kapiri, Melida Pinda, Emmanuel Salamao and Eze Ogemdi Uchenna.

Notes 1 Leah A. Lievrouw and Sonia Livingstone, eds., Handbook of New Media: Social Shaping and Consequences of ICTs (London: Sage, 2002). 2 Rana Yousef, Omar Adwan and Murad Abu-Leil, “An Enhanced Mobile Phone Dialler Application for Blind and Visually Impaired People,” International Journal of Engineering & Technology 2, no. 4 (2013): 270. 3 Shaun K. Kane, Jeffrey P. Bigham and Jacob O. Wobbrock, “Slide Rule: Making Mobile Touch Screens Accessible to Blind People Using Multi-Touch Interaction Techniques,” in Proceedings of the 10th Onternational ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2008), 73–80.

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Mobile Phones and Visual Impairment 4 Melissa Dawe, “Understanding Mobile Phone Requirements for Young Adults with Cognitive Disabilities,” in Proceedings of the 9th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2007), 179–186. 5 Julio Abascal and Antón Civit, “Mobile Communication for People with Disabilities and Older People: New Opportunities for Autonomous Life,” in Information Society for All: Proceedings of the 6th ERCIM Workshop, ed. P. L. Emiliany and C. Stephanidis (Firenze: Consiglio Nazionale delle Ricerche, 2000), 255–268; Sylvia Söderström and Borgunn Ytterhus, “The Use and Non-Use of Assistive Technologies From the World of Information and Communication Technology by Visually Impaired Young People: A Walk on the Tightrope of Peer Inclusion,” Disability & Society 25, no. 3 (2010): 303–315; Juan P. Rey-López et al., “Sedentary Patterns and Media Availability in European Adolescents: The HELENA Study,” Preventive medicine 51, no. 1 (2010): 50–55. 6 Shaun K. Kane, Chandrika Jayant, Jacob O. Wobbrock and Richard E. Ladner, “Freedom to Roam: A Study of Mobile Device Adoption and Accessibility for People with Visual and Motor Disabilities,” in Proceedings of the 11th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2009), 115–122. 7 Pew Research Center, Cell Phones in Africa: Communication Lifeline (Washington, DC: Pew Research Center, 2015), www.pewglobal.org/2015/04/15/cell-phones-in-africa-communication-lifeline. 8 My Broadband, “How Expensive South Africa’s Mobile Data Prices Really Are — #DataMustFall,” Mybroadband, accessed July 30, 2017, https://mybroadband.co.za/news/cellular/181122-how-expensivesouth-africas-mobile-data-prices-really-are-datamustfall.html. 9 Jonathan Donner, “Shrinking Fourth World? Mobiles, Development, and Inclusion,” in Handbook of Mobile Communication Studies, ed. James E. Katz (Cambridge, MA: MIT Press, 2008), 29–42. 10 Arthur Goldstuck, Internet Access in South Africa 2010: A Comprehensive Study of the Internet Access Market in South Africa (Johannesburg: World Wide Worx, 2010). 11 Kane et al.,“Freedom to Roam.” 12 Apartheid is an Afrikaans word used to define a system of racial segregation in South Africa enforced through legislation by the National Party (NP) from 1948–1994. 13 Crain Soudien and Jean Baxen, “Disability and Schooling in South Africa,” in Disability and Social Change: A South African Agenda, ed. Brian Watermeyer, Leslie Swartz, Theresa Lorenzo, Marguerite Schneider and Mark Priestleyet (Cape Town: HSRC Press, 2006), 149–163. 14 The Bill of Rights of the Constitution of the Republic of South Africa, 1996, Government Gazette, Number 17678, 7–20. 15 Department of Social Development, Policy on Disability (Pretoria: DSD, 1997), www.dsd.gov.za/index2. php?option=com_docman&task=doc_view&gid=29&Itemid=39. 16 At August 2, 2017, the South African Rand (ZAR) was at 10.55 to 1 Australian Dollar (AUD). 17 Department of Social Development, Draft First Periodic Country Report on the United Nations Convention on the Rights of Persons With Disabilities, Government Gazette, no. 38802 (Pretoria: DSD, 2015). 18 United Nations Development Programme, “Human Development Reports,” accessed August 2, 2017, http://hdr.undp.org/en/composite/trends. 19 Statistics South Africa, Census 2011: Profile of Persons with Disabilities in South Africa, Report no. 03–01-59 (Pretoria: Statistics South Africa, 2014). 20 Casual Day for Persons with Disabilities, accessed August 2, 2017, www.casualday.co.za. 21 Thisability, accessed August 2, 2017, www.thisability.co.za. 22 Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowman & Littlefield, 2003). 23 Katie Ellis and Gerard Goggin, “Disability, Global Popular Media, and Injustice in the Notorious Trial of Oscar Pistorius,” in Disability Media Studies, ed. Elizabeth Ellcessor and Bill Kirkpatrick (New York: New York University Press, 2017), 197–221. 24 eNews Channel Africa, “Mandela Memorial Interpreter ‘Was Hallucinating,’” December 12, 2013, www. enca.com/south-africa/mandela-memorial-interpreter-was-hallucinating. 25 Gerard Goggin, “Disability and Digital Inequalities: Rethinking Digital Divides with Disability Theory,” in Theorizing Digital Divides, ed. Massimo Ragnedda and Glenn W. Muschert (New York: Routledge, 2017), 63–74. 26 Kerry Dobransky and Eszter Hargittai, “The Disability Divide in Internet Access and Use,” Information, Communication & Society 9, no. 3 (2006): 313–334. 27 Text-to-speech (TTS) is a form of synthesis that coverts text into spoken voice output. 28 Louis Coetzee, N. Govender and Ilse Viviers, “The National Accessibility Portal: An Accessible Information Sharing Portal for the South African Disability Sector,” in Proceedings of the 2007 International CrossDisciplinary Conference on Web Accessibility (W4A) (New York: ACM, 2007), 44–53.

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Lorenzo Dalvit 29 In South Africa “colored” is a name given to a person of an ethnic group comprised primarily of persons of mixed race. 30 A township is a suburb in South Africa of predominantly black occupation that was officially designated for black occupation under the apartheid legislation. 31 Braille is a form of written language for blind people, in which characters are represented by patterns of raised dots that are felt with the fingertips. 32 Abascal and Civit, “Mobile Communication.” 33 Sally Kumwenda, “Mobile Phone Usage by Visually Impaired Persons” (Honours thesis, Schools of Journalism and Media Studies, Rhodes University, South Africa, 2014). 34 João Oliveira, Tiago Guerreiro, Hugo Nicolau, Joaquim Jorge and Daniel Gonçalves, “Blind People and Mobile Touch-Based Text-Entry: Acknowledging the Need for Different Flavors,” in ASSETS ‘11: The Proceedings of the 13th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2011), 179–186. 35 Ravi Kuber, Amanda Hastings, Matthew Tretter and Dónal Fitzpatrick, “Determining the Accessibility of Mobile Screen Readers for Blind Users,” in Proceedings of IASTED Conference on Human Computer Interaction, Baltimore, USA (2012), 182–189. 36 Abascal and Civit, “Mobile Communication.” 37 IsiXhosa is one of the official languages of South Africa and is a member of the Bantu/Nguni family of languages. The language, which consists of click consonants, is spoken by about 7.9 million people mainly in South Africa and also in Botswana and Lesotho.

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27 VIDEO ON DEMAND Is This Australia’s New Disability Digital Divide? Wayne Hawkins

Introduction When we talk of digital disruption we think of innovative start-ups, capitalizing on opportunities provided by digital networks, challenging and disrupting traditional business models. Clayton Christensen coined the phrase “disruptive innovation” in 1995 to explain his theory of how innovative products or services attract underserved segments of a market as an entry point.1 Adopting Christensen’s definition of “disruptive innovation” in the context of media and communications, we see an explosion of innovative start-up companies challenging the status quo. Music, publishing, news, television and film industries are all being disrupted by innovation made possible by the growing ubiquity of high-capacity broadband. Broadband as a disruptive technology has created both threats and opportunities in media and communications for businesses, consumers and policy makers alike. While the economics and changing industry structures have been widely examined and theorized across business, research and political sectors, there has been little investigation into the social implications of this disruption, in particular the implications for people with disability. Audiovisual content delivered over broadband is challenging traditional broadcast television, with its capacity to deliver time-shifted programming and video-on-demand (VOD) services. In evaluating these new services from the perspective of critical disability studies we see that progress in disability access and inclusion is also being disrupted. Consumers with disability and their advocacy organizations now need to develop innovative models of resistance in order to push for the inclusion of access services if they are to benefit from these new digital services. No longer willing to wait for legislative or regulatory safety nets, disability activists are harnessing online social media channels to create agency and disseminate calls-to-action as new ways to challenge the embodiment of ableist norms in these new disruptive services.2 Questions about digital accessibility and inclusion are often routinely answered from an assumption that digital technologies, such as broadband-delivered services, are enablers for people with disability, somehow inherently ameliorating the barriers of anolog platforms. However, as with most technology innovations, digital technology only becomes accessible when inclusive design and usability factor in the design process.3 Similarly, access services are necessary if audiovisual content is to be accessible and usable. Access services—captioning, audio description, signlanguage interpretation and clean audio tracks—provide many consumers with disability,

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primarily consumers with sensory impairments, greater access to information, social participation and community inclusion. Audiovisual content with no textual display of the dialogue excludes people who are Deaf or hearing impaired from knowing what is being said. Similarly, when following the context of a program or film is dependent on knowing what is happening on-screen, people who are blind or vision impaired are unable to follow the program without audio description. On-screen sign language interpretation allows people whose first language is sign language to understand what is being said and a digital clean audio track, eliminating background sounds, allows people who are hard of hearing to follow the dialogue. The hard-won adoption of access services provided across traditional television for people with disability, largely guaranteed under social policy, broadcast legislation and the acknowledgment of access to communications as a human right, are by and large being lost in the transition to anytime, anywhere, any device audiovisual media delivered over broadband. These access services need to be embedded into online services if people with disability are to enjoy the benefits of choice and control afforded by VOD’s anytime, anywhere, any device. Despite the widespread international adoption of the Convention on the Rights of Persons with Disability (CRPD)—160 signatories as of May 2017—public policy has struggled to keep pace with these rapidly evolving online services.4 Thereby allowing for a recreation of the market failure of traditional broadcast television in terms of universal access; failing to uphold the social contract of access and inclusion for people with disability enshrined in national and international human rights instruments. While broadcast regulators such as the US Federal Communications Commission (FCC) and the UK’s Office of Communications (Ofcom) have a long history of implementing and monitoring television captioning for viewers who are Deaf or hearing impaired, the move to provide access services over Internet Protocol television (IPTV) and VOD services has been slow and fractured.5 It wasn’t until the implementation of the US Twenty-First-Century Communications and Video Accessibility Act in 2010 that the FCC had the congressional mandate to begin requiring captioning across different delivery platforms.6 In the UK it has been an ongoing “wait and see” approach with the regulator collecting annual reporting on the levels of access services being provided in an absence of any regulatory requirements.7 Interestingly, Australia, one of the first nations to sign and ratify the CRPD has, as of August 2017, adopted no other regulatory oversight of VOD services other than its recent implementation of a general services tax (GST)—colloquially known as the “Netflix tax.”8

VOD Down Under This chapter evaluates Australia’s burgeoning VOD market, and argues that this technology constitutes a disruption for consumers with a disability. Whereas digital terrestrial television in Australia is directed by the Broadcasting Services Act 1992 (amended in 2012) to provide limited access services for people with disability—specifically closed captions—this disruptive VOD market is as yet unregulated in terms of accessibility.9 Consequently, there is a paucity of access services in place to make these “anytime, anywhere, any device” services accessible for Australians with sensory impairments. Australia’s first online catch-up television service was the Australian Broadcasting Corporation’s iview, introduced in 2008. Since then all free-to-air broadcasters have introduced stand-alone online catch-up services.10 In addition, in 2014, Australia’s free-to-air broadcasters introduced Freeview Plus, an online streaming platform offering both broadcast and catch-up programming. In addition to these catch-up services, by mid-2015 a number of new subscription VOD services had been introduced into the Australian market—Netflix Australia, Stan and Presto (Presto ceased operations in early 2017)—along with an increasing number of Telcos and Internet service providers (ISPS) offering online VOD services such as Fetch TV, as part of their triple-play bundles.11 296

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Prior to the introduction of these new VOD services, widely referred to as the “streaming wars” of 2015, there were limited offerings in the Australian subscription VOD market.12 For example, TiVO, a forerunner to streaming services, while successful in the United States had a short-lived Australian lifespan during the late 2000s.13 It was Quickflix who introduced Australia’s first streaming subscription service in 2011 after several years of offering an online DVD rental service. This was followed, in 2013, with “EZYFlix,” the streaming subscription service that grew out of “EZYDVD,” another online DVD rental service. It is this growing plethora of new and emerging online audiovisual services that is disrupting the traditional television and movie market, changing the way consumers engage with audiovisual media. Providing consumers with unprecedented flexibility and greater control over when and how they consume audiovisual content. No longer are consumers constrained by television consoles or cinema screening schedules when wanting to view television or movies.14 This chapter investigates how the current VOD market ostensibly denies this increased flexibility and control for Australian VOD consumers with disability. First, by adopting a critical disability theory approach, the chapter examines how these VOD services create a new interpretation of digital divide in Australia, expanding on the traditional binary concept of the digital divide—that of connected or not connected. Furthermore, the chapter expands the concept of a “second level” digital divide proposing that there is another manifestation of digital divide. In this case a digital divide is created when information delivered over digital networks is inaccessible to people with sensory impairments; adopting the term “disability digital divide” to explain what it means to be denied access to the information that digital networks can deliver constitutes a critical part of the chapter’s focus. Second, the chapter examines the role public policy has played in exacerbating this disability digital divide. It illuminates how Australia’s neoliberal public policy approach in media and communications has prioritized ableist norms over inclusive social policies. Further, the chapter asserts that social resistance to these ableist norms will continue to be necessary for Australians with disability if they are to gain access to and benefit from these VOD services, suggesting that the principles of access and inclusion enshrined in the CRPD are the enablers necessary to underpin this resistance. The chapter concludes by examining how other jurisdictions are making progress in providing greater access to online audiovisual media for their citizens with disability. Embedded in this examination are possible approaches for a productive and inclusive way forward for stakeholders, people with disability, broadcasters, service providers and government. To bridge this socially constructed disability digital divide, created by inaccessible VOD services, this chapter offers a critical summary of and suggestions for amendments in practice and some hope for more inclusive options in future planning.

Viewing VOD Through a Critical Disability Theory Lens The convergence of media in which traditional platforms of television and cinema are being delivered as “anywhere, anytime, any device” consumables over broadband, creates new tensions between digital technologies and disability access and inclusion.15 Interrogating this tension from a critical disability approach provides a valuable framework to explore the pressures between constructs of disability and equality.16 Critical disability theory, as with other interpretations of Horkheimer’s critical theory of society—feminist theory, critical race theory, queer theory—challenges hegemonic social narratives.17 Through incorporation of disability and critical theory as one of this chapter’s theoretical foundations it is possible to investigate and illuminate how the social construction of disability in Australia has influenced public policy, specifically the digital convergence of new media policy.18 The chapter asserts that it is 297

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the inherent design of audiovisual content and delivery services embedded within the ableist public policy framework in which VOD is situated that creates barriers to access for people with a range of impairments. In Australia disabled persons organizations (DPOs) have lobbied for many years to overcome the ableist norms that have dominated our disability discourse. Changing the disability discourse from that of an historical perception of disability as an aberration needing to be hidden from public view and addressed through charitable and welfare protection19 to the current social model of disability in which it is understood to be societal barriers—both physical and attitudinal—which disable people with impairment.20 This change in the positioning of disability has not been universal, while there are a number of positive changes in how Australia views people with disability there continues to be a dichotomy between public discourse and public policy. For example, Australia was one of the first countries to adopt the CRPD in 2008, and in 2010 adopted a whole-ofgovernment national disability strategy to guide the implementation of the CRPD. Furthermore, in July 2013 Australia launched the National Disability Insurance Scheme, with the goal of ensuring all Australians who have or acquire a profound or severe disability, before the age of 65, have access to the supports they need to live an “ordinary” life.21 In stark contrast to these forwardthinking initiatives, successive governments have failed to address the media and communications market failure, unwilling to implement the legislative safety-net mandating access services on these new broadband-enabled content services.

Digital Divide The long-held conception of the “digital divide” in Australia has primarily been that of the tension between those people who can connect to digital networks and those who cannot—the haves and have-nots—thereby focusing the discussion on issues of network availability, affordability and accessibility. Moreover, the policy focus on bridging this digital divide has been on promoting growing the network infrastructure, expanding out into areas that have previously not had available networks; addressing affordability of connection to the network; and promoting assistive products for people who for reasons of disability cannot use traditional telephony network services.22 Since the 2009 introduction of Australia’s National Broadband Network roll-out there has been an ongoing policy presumption that this national network will ameliorate the digital divide—providing broadband availability to all people in Australia. This broadband availability, however, will only be the first step in connecting all Australians. Providing broadband access to all premises will not ameliorate those digital divides created through issues of affordability, digital literacy and competency, nor will it bridge the digital divide created by inaccessible digital content. For many low-income Australians there are barriers of affordability making digital connectivity difficult or sometimes impossible.23 Exacerbating these low-income issues for people with disability is the acknowledged higher cost of living with disability, the high-cost of assistive technology and the ongoing cost of high-capacity bandwidth needed to be able to participate fully over digital networks. Recent statistics indicate that only 53 percent of Australians with disability are in employment and only one in two of those employed are in full-time employment.24 Australian government statistics on social welfare benefits report that less than 10 percent of people in receipt of a disability support pension have additional sources of income.25 A 2010 Organization for Economic Co-Operation and Development (OECD) report indicated that almost one in two Australians with disability are living in poverty; this is more than twice the number of Australians without disability.26 These factors of low levels of employment, high levels of poverty and the higher cost of living with disability mean that for many Australians with disability digital engagement is unaffordable.

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Digital competency also plays a significant role in Australia’s disability digital divide. The Australian Digital Inclusion Index reports that digital literacy plays a significant role in digital inclusion.27 The Index also indicates that older Australians have higher levels of digital exclusion. Given the age-related incidence of sensory impairments—vision loss and hearing loss—digital exclusion is higher for these groups. For example, Vision Australia’s research estimates that 70 percent of people who are blind or have low vision are aged 65 and over, and predicts a significant increase to this figure in the coming decades. Additionally, Vision Australia research indicates that more than 65 percent of their clients do not use the Internet.28 When we look at national research we see that people with the lowest level of digital inclusion are those people with low incomes, people over the age of 65 and those people with disability.29 Examining the barriers created by inaccessible VOD highlights a more nuanced understanding of the digital divide—expanding on the binary notion of connected or not connected, creating a necessity to reimagine the concept of the digital divide to include not only the barriers to connectivity but also the barriers to the information and content that is delivered over the network.30 Specifically with regard to VOD, it is access to the audiovisual content delivered over online platforms that creates a digital divide when that content is not accessible. The compounding nature of multiple barriers for people with disability exemplifies the critical need to include access features in all VOD content.

Video on Demand Australia has been undergoing a roll-out of a National Broadband Network (NBN) since 2011. The NBN promises to provide high-speed, high-capacity broadband to every household in Australia by 2020. Additionally, Australia’s growing footprint of 4G mobile broadband offers previously unavailable opportunities for streaming high-quality audiovisual media. These high-capacity, all digital networks are providing the opportunity for this explosion of VOD. Australian consumers have developed an appetite for viewing this online content; content viewed over a range of devices—computers, Internet-enabled television, mobile devices such as tablets and smartphones. While research indicates that broadcast television remains the primary viewing model for most Australians,31 it is inevitable that this will change with the expansion of online viewing platforms and flexible consumption models. Australians with disability expect to be able to take advantage of these new delivery models and the anytime, anywhere flexibility they provide.

Catch-Up Television The transformation in the delivery of television programming and other audiovisual content over broadband has occurred at a speed that public policy has been unable to keep pace with. As such, this explosion of new services with their convergence of media and increased delivery models has perpetuated the dichotomy of new technology for consumers with disability: technology as enabler on the one hand or barrier on the other.32 Given that there is no public policy requirement for VOD content to include access services for Australian viewers with disability, it is not surprising that free-to-air broadcasters have been slow to provide any access services on their catch-up platforms.33 The national broadcast service, the Australian Broadcast Corporation, offers the highest percentage of closed captioning on its catch-up content. However in 2017 the ABC catch-up “iview” service was only providing captioning on programming that had aired on the network’s main terrestrial channel with captions; select programming on its additional digital terrestrial channels—specifically ABC original and commissioned programming. The ABC’s iview service is also the only Australian catch-up service to have provided audio description. This was during a 15-month government-funded audio description trial that concluded in July 2016. While other networks provide catch-up services, the amount of captioning 299

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varies between broadcasters, leaving consumers who rely on captions with no certainty about which programs will be captioned. Aside from this smorgasbord of captions, there are no other access services —audio description, Auslan Sign Language or clean audio tracks—on any of the free-to-air catch-up services.

Subscription Services Mirroring the online catch-up television environment, subscription VOD services available in Australia provide very little in the way of access services for viewers with disability.34 Of the increasing number of subscription services only Netflix offers 100 percent of captioned content and a limited amount of audio-described content. New market entrants such as Stan, introduced into the Australian market in April 2015, provide limited captioned content and no audio-described content despite many of the television programs and films in their catalogue having both caption and audiodescription digital files available from the content developers. Quickflix, Australia’s first streaming VOD service, provides captions on content where caption files are available from the content suppliers, but has no audio description on any of its streaming content. This paucity of access services on Australian online video content exacerbates the disability digital divide. With the growing amount of inaccessible VOD content available in Australia, consumers with disability are being left behind when it comes to social inclusion and participation. This barrier to information through new media is reinforcing hegemonic ableist norms at a time when recent Australian disability discourse has been one of inclusion and participation.

Policy Discourse Good public policy involves balancing a number of important interests. For communications and disability these issues include policy and regulations that encourage a robust and competitive industry, as well as address issues of inclusive access and also underpin broader social policy goals and objectives.35 Australia has adopted a number of human rights instruments, both domestic and international—Disability Discrimination Act (1992), CRPD (2008), National Disability Strategy (2011)—intended to provide equitable access and inclusion along with anti-discrimination protections for people with disability. Implicit in these instruments is an expectation that public policy will be inclusive of the needs of people with disability and when the private sector fails to include people with disability these instruments will be the safety net to ensure that all Australians have full and equal participation in all aspects of Australian life. This chapter’s evaluation of the transformation of Australia’s broadcast and media marketplace and the public policies designed to regulate this market indicate that these human rights mechanisms and their supporting public policy protections are falling short. Assuming that the market will address all consumer needs in broadcasting has been the promise of industry and successive federal governments. While industry self-regulation policy proponents argue that public interest is best served by a robust and competitive marketplace, there is much evidence that the competitive broadcasting market has failed to deliver for many Australians living with disability. It took over a decade of advocacy and campaigning by DPOs and disability advocates before traditional broadcasters were required, in 2014, to provide 100 percent closed-captioned programming on their primary free-to-air channels between the hours of 6 am and midnight.36 In as much as these new online television catch-up services do not include 100 percent captioning, audio description or sign-language interpretation, free-to-air television broadcasters have recreated the same barriers that have plagued terrestrial television services— excluding consumers with sensory impairment. While the national broadcaster recently concluded—in July 2016—a 15-month audio-description trial on its online catch-up service, the 300

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amount of described content was limited to 14 hours per week, less than 10 percent of the available content on the service. While this trial was considered as a positive initiative by the Australian blindness sector and consumer organizations—noting that the majority of Australians who are blind or vision impaired were unable to participate given their lack of broadband connectivity—history again tells us that this trial may go the way of the 2013 three-month trial that the same broadcaster delivered on its primary terrestrial television channel. This initial trial was enthusiastically adopted by blind and vision-impaired viewers, however since the conclusion of the trial there has been no implementation by the broadcaster or any other broadcaster in Australia to implement a permanent audio-description service. Neither has there been any commitment from successive governments to mandate this essential access feature on any of the free-to-air broadcast networks. Audio description on television is available in many comparable jurisdictions, for example in the United Kingdom television broadcasters are mandated to provide a minimum of 10 percent of their programming with audio description. The UK regulator, Ofcom, reports that many of the networks are exceeding these mandated quotas and providing in excess of 20 percent of their programming with audio description.37 In fact, Australia is the only Englishspeaking country in the OECD that has no audio description on free-to-air television—in addition to the United Kingdom, Canada, Ireland, New Zealand and the United States all have some level of audio-described content on free-to-air broadcast television.38 While Australian broadcasters argue “technical” difficulties prevent them from providing audio description, it is apparent from these international examples that the problem is not “technical” but a lack of willingness from both the industry and government to implement this access feature in Australia. In the same way that it took many years for Australian public policy to address this inequity on traditional broadcast television, there is little expectation that public policy will address this new disability digital divide in a timely manner. In fact, it appears that the window of opportunity for disability as a public policy agenda priority in the telecommunications sector may well have come and gone. After a number of media reviews and inquiries including the Australian Government’s 2010 review of media convergence and multiple inquiries into electronic access to media for people with disability, there is still no public policy plan to implement further access services across audiovisual media. As can be seen in reviewing the history of resistance by people with disability to gain access services on broadcast television in Australia, the same ableist norms and hegemonic dominance inherent in Australia’s communications market are now being recreated with this new media of VOD. With only one of the free-to-air broadcasters providing a significant proportion of closed captions on their online catch-up services, we see the reintroduction of the market failure in providing equal access for people with disability. The formation of an audio-description working group, announced by the minister for communications and the arts in April 2017, was seen as a possible bright spot on the policy agenda. The working group was made up of representatives from broadcasting and streaming industries, audio-description service providers and consumer groups to “examine options for increasing the availability of audio description services in Australia.” However the final report,39 released in May 2018, was met with disappointment by leading audio-description advocates at the lack of “commitment from the Government to introduce a permanent audio description service on Australian television within a specified timeframe.”40

Conclusion Australia has long been a nation of early adopters of new technologies. This is clearly evident in our rapidly growing consumption of online catch-up television and VOD services. However, as this chapter has shown, this increased anytime, anywhere, any device consumption of VOD is 301

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not possible for all Australians. Many people with disability are being left out of this rapidly expanding digital market, creating a new disability digital divide in Australia. While other comparable countries are adopting inclusive policies and initiatives to address this disability digital divide for their citizens, Australia remains stalled in taking tangible action to bridge this growing disability digital divide. The US Twenty-First-Century Communications and Video Accessibility Act (CVAA), enacted in 2010, includes provision requiring that audiovisual content broadcast with captions must provide captions when delivered over other platforms such as catch-up television or VOD services. The CVAA additionally requires major broadcasters to provide progressively greater quotas of audio-described content on broadcast television. In the United Kingdom, the communications regulator Ofcom requires that television broadcasters provide captions, audio description and sign-language services. The provision of these services is required to increase over time. Recent Ofcom reports indicate that while broadcasters are currently mandated to provide at least 10 percent of content with audio description, many broadcasters are voluntarily exceeding these quotas.41 For example, the BBC is providing in excess of 20 percent of programming with audio description. Additionally, Ofcom regulates the VOD industry in the United Kingdom, and while there are currently no legislative requirements for VOD providers to provide access services, Ofcom is monitoring annual levels of access services being provided and working to encourage providers to increase accessibility of their services over time. These international initiatives have roll-on benefits for Australian VOD consumers. With the increased globalization of delivery services, content produced overseas with access services has the potential to benefit Australian consumers with disability. For example, the introduction of Netflix in the Australian VOD market in 2015 has provided Australians who rely on captions access to Netflix’s entire Australian catalogue and provided Australians who rely on audio description access to audio-described Netflix content. Much of Netflix’s accessibility is a result of disability advocacy in the United States. Netflix is required to provide captioning on its content as a result of an Americans with Disabilities Act court case initiated by the National Association of the Deaf.42 Similarly, audio-described Netflix content is largely due to advocacy pressure bought against the provider by the Accessible Netflix Project.43 These international initiatives outline opportunities for Australian stakeholders to work to bridge this growing disability digital divide created by inaccessible audiovisual content. While the dichotomy of new digital technologies as potential enablers or potential barriers for people with disability is broadly acknowledged in critical disability studies, communications and media studies,44 this chapter has shown that VOD as a disruptive technology, while having the capacity to provide access services—thereby enabling and empowering people with sensory impairment—is in fact a disempowering development for many Australians with disability. It appears that the lessons of the past have not been learned by industry or policy makers, with new VOD technologies recreating the familiar barriers to access and inclusion of traditional television. While Australian disability public policy is talking the talk of inclusion it is not walking the walk to make this new media accessible for all Australians. Disability organizations and disability advocates are again being called upon to challenge the ableist hegemony of communications and media policy. Grassroots activism underpinned by the human rights principles of equal access and inclusion—embodying the emancipatory nature of critical disability theory—may well be the best pathway to resolving this impasse in Australia in the same way as grassroots activism in the United States has increased Netflix access for people who are Deaf and people who are blind or vision impaired.

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Notes 1 J. L. Bower and C. M. Christensen, “Disruptive Technologies: Catching the Wave,” Harvard Business Review 73, no. 1 (January–February, 1995): 43–53. 2 The Accessible Digital Project, “Advocates Taking Steps to Ensure Digital Media Accessibility,” accessed November 23, 2018, https://netflixproject.wordpress.com. 3 Alan Roulstone, Disability and Technology: An Interdisciplinary and International Approach (London: Palgrave Macmillan, 2016). 4 United Nations, “Convention on the Rights of Persons with Disabilities,” accessed May, 2017, www.un. org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html. 5 US Federal Communications Commission, “Closed Captioning Rules,” last modified April 11, 2018, www.fcc.gov/consumers/guides/closed-captioning-television; Ofcom, “Ofcom’s Code on Television Access Services,” January 30, 2017, www.ofcom.org.uk/tv-radio-and-on-demand/broadcast-codes/tvaccess-services. 6 US Federal Communications Commission, “Consumer Guide: Twenty-First-Century Communications and Video Accessibility Act (CVAA),” October 27, 2016, www.fcc.gov/consumers/guides/21st-centurycommunications-and-video-accessibility-act-cvaa. 7 Ofcom, “Accessibility of On-Demand Programme Services,” April 6, 2017, www.ofcom.org.uk/consultationsand-statements/category-1/on-demand-accessibility. 8 Kali Sanyal, “Applying GST to Digital Products and Services Imported by Consumers,” in Budget Review 2015–16 (Canberra: Parliamentary Library, 2015), 159–160, www.aph.gov.au/About_Parliament/Parliamen tary_Departments/Parliamentary_Library/pubs/rp/BudgetReview201516/Digital. 9 Katie Ellis, “Television’s Transition to the Internet: Disability Accessibility And Broadband-Based TV in Australia,” Media International Australia 153, no. 1 (2014): 53–63; Media Access Australia, Access on Demand: Captioning and Audio Description on VOD Services (Ultimo, NSW: MAA, 2015). 10 Ellis, “Television’s Transition to the internet”; Media Access Australia, “Access on Demand.” 11 Robert Morsillo and Trevor Barr, “Innovation or Disruption? The National Broadband Network Comes to Australian TV,” International Journal of Digital Television 4, no. 3 (2013): 239–260. 12 Harry Tucker, “Netflix Leads the Streaming Wars, Followed by Foxtel’s Presto,” news.com.au, June 24, 2015, www.news.com.au/technology/home-entertainment/tv/netflix-leads-the-streaming-wars-followedby-foxtels-presto/news-story/7adf45dcd7d9486ff47ec5ea5951287f. 13 James Meese, Rowan Wilken, Bjorn Nansen and Michael Arnold, “Entering the Graveyard Shift: Disassembling the Australian TiVo,” Television & New Media 16, no. 2 (2015): 165–179. 14 Rhiannon Bury and Li Johnson, “Is It Live or Is It Time Shifted, Streamed or Downloaded? Watching Television in the Era of Multiple Screens,” New Media & Society 17, no. 4 (2015): 592–610; Evelien D’heer and Cédric Courtois, “The Changing Dynamics of Television Consumption in the Multimedia Living Room,” Convergence 22, no. 1 (2016): 3–17. 15 Katie Ellis and Mike Kent, Disability and New Media (New York: Routledge, 2011); Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowman & Littlefield, 2003). 16 Diane Devlin and Richard Pothier, eds., Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law (Vancouver: UBC Press, 2006); Dan Goodley. “Towards Socially Just Pedagogies: Deleuzoguattarian Critical Disability Studies,” International Journal of Inclusive Education 11, no. 3 (2007): 317–334. 17 David L. Hosking, “Critical Disability Theory” (paper presented at the 4th Biennial Disability Studies Conference at Lancaster University, UK, September 2–4, 2008). 18 Ellis and Kent, Disability and New Media; Goggin and Newell, Digital Disability; Gerard Goggin and Christopher Newell, “The Business of Digital Disability,” Information Society 23, no. 3 (2007): 159–168. 19 Michael J. Bourk, Universal Service? Telecommunications Policy in Australia and People with Disabilities, ed. Tom Worthington (Belconnen: Tomw Communications, 2000); Scott Hollier, “The Disability Divide: a Study into the Impact of Computing and Internet-Related Technologies on People Who Are Blind or VisionImpaired” (PhD Thesis, Curtin University of Technology, Perth, Australia, 2006), https://espace.curtin. edu.au/handle/20.500.11937/214. 20 Hollier, “The Disability Divide.” 21 National Disability Insurance Scheme (NDIS), The New Way to an Ordinary Life, Annual report 2015–16 (Canberra: National Disability Insurance Agency, 2016), https://annualreport.ndis.gov.au/section-1-gettingndis-ready/the-new-way-to-an-ordinary-life. 22 Gerard Goggin and Christopher Newell, “An End to Disabling Policies? Towards Enlightened Universal Service,” Information Society 16 (2000): 127–134; Rachel Lloyd, Jock Given and Otto Hellwig, “The Digital

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Divide: Some Explanations,” Agenda 7, no. 4 (2000): 345–358; Tanya Notley and Marcus Foth, “Extending Australia’s Digital Divide Policy: An Examination of the Value of Social Inclusion and Social Capital Policy Frameworks,” Australian Social Policy 7 (Canberra: Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, 2008). Sarah Wise, Trying to Connect: Telecommunications Access and Affordability Among People Experiencing Financial Hardship (Anglicare Victoria and ACCAN, 2013), https://accan.org.au/Telecommunications%20access% 20and%20affordability%20among%20people%20experiencing%20financial%20hardship.pdf. Australian Human Rights Commission (AHRC), “Willing to Work Factsheet: Australians with Disability” (April 2016), www.humanrights.gov.au/our-work/disability-rights/publications/willing-work-nationalinquiry-employment-discrimination#factsheets. Department of Social Services, “DSS Payment Demographic Data March 2017,” last modified June 25, 2018, www.data.gov.au/nl/dataset/dss-payment-demographic-data/resource/adbe8196-5669-4f33-b01a65b04ad41b55?inner_span=True. OECD, “Sickness, Disability and Work: Breaking the Barriers: Australia, 2010,” November 24, 2010, www.oecd.org/australia/46497207.pdf. Julian Thomas, Jo Barraket, Chris Wilson, Scott Ewing, Trent MacDonald, Julie Tucker and Ellie Rennie, Measuring Australia’s Digital Divide: The Australian Digital Inclusion Index 2017 (Melbourne: RMIT University for Telstra, 2017), https://digitalinclusionindex.org.au. Vision Australia, Report on the Trial of Audio Description on ABC iview (Vision Australia, January 2017), 8. Thomas et al., Measuring Australia’s Digital Divide; Australian Communications and Media Authority, “Australians Embrace a Digital Life,” March 27, 2015, www.acma.gov.au/theACMA/engage-blogs/engageblogs/researchacma/Australians-embrace-a-digital-life. Manuel Castells, The Internet Galaxy: Reflections on the Internet, Business and Society (Oxford: Oxford University Press, 2001); Eszter Hargittai, “The Digital Divide and What to Do About It,” in New Economy Handbook, ed. D. C. Jones (San Diego, CA: Academic Press, 2003), 822–841; Paul T. Jaeger, “Telecommunications Policy and Individuals with Disabilities: Issues of Accessibility and Social Inclusion in the Policy and Research Agenda,” Telecommunications Policy 30, no. 2 (2006): 112–124. Roy Morgan Single Source, “1 in 7 Australians Now Watch No Commercial TV, Nearly Half of All Broadcasting Reaches People 50+, and Those with SVOD Watch 30 Minutes Less a Day,” February 1, 2016, www.roymorgan.com/findings/6646-decline-and-change-commercial-television-viewing-audiencesdecember-2015-201601290251. Goggin and Newell, Digital Disability. Media Access Australia, “Access on Demand.” Katie Ellis, Mike Kent, Kathryn Locke and Melissa Merchant, Accessing Subscription Video on Demand: A Study of Disability and Streaming Television in Australia (Sydney: Australian Communications Consumer Action Network, 2016). Bourk, Universal Service?; Jaeger, “Telecommunications Policy and Individuals.” Parliament of Australia, Broadcasting Services Amendment (Improved Access to Television Services) Act 2012, No. 83, 2012, www.legislation.gov.au/Details/C2012A00083. Ofcom, Television Access Services: Review of the Code and Guidance (London: Ofcom, 2006), www.ofcom.org. uk/__data/assets/pdf_file/0016/42442/access.pdf. Vision 2020 Australia, “There’s No Broadcast Reform ‘Breakthrough’ Without Audio Description,” Media release, August 18, 2017, www.vision2020australia.org.au/media/2017-08-18/theres-no-broadcast-reformbreakthrough-without-audio-description. Department of Communications and the Arts, “Audio Description Working Group—Final Report” (Canberra: DCA, 2017). Blind Citizens Australia, “Fifield Snubs People Who Are Blind or Vision-Impaired,” Media release, May 23, 2018, www.bca.org.au/adontv; Vision 2020, “Australians Missing Out on Audio Description,” Media release, May 28, 2018, www.vision2020australia.org.au/news/2018-05-28/australians-missing-outon-audio-description; Vision Australia, “Government Continues to Fail the Blindness and Low Vision Community,” media release, May 25, 2018, www.visionaustralia.org/community/news/25-05-2018/audiodescription-working-group-report. Ofcom, Television Access Services Report 2016 (London: Ofcom, 2017), www.ofcom.org.uk/research-anddata/multi-sector-research/accessibility-research/tv-access-2016. Netflix, Inc., “Netflix and National Association of the Deaf (NAD) Reach Historic Agreement to Provide 100% Closed Captions in On-Demand Streaming Content Within Two Years,” October 10, 2012, https:// media.netflix.com/en/press-releases/netflix-and-national-association-of-the-deaf-nad-reach-historic-agreementto-provide-100-closed-captions-in-on-demand-streaming-content-within-two-years-migration-1.

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Video on Demand 43 The Accessible Digital Project, “Advocates Taking Steps.” 44 Ellis, “Television’s Transition to the Internet;” Ellis and Kent, Disability and New Media; Goggin and Newell, Digital Disability; Gerard Goggin and Christopher Newell, Disability in Australia: Exposing a Social Apartheid (Sydney: UNSW Press, 2005); Chris Mikul, Captioning on Video on Demand Services: It’s Time for Australia to Catch Up (Ultimo, NSW: Media Access Australia, 2015); Robert Morsillo, “One Down, Two to Go: Public Policy in Service of an Available, Affordable and Accessible National Broadband Network for People with Disability,” Telecommunications Journal of Australia 61, no. 2 (2011): 28.1–28.13.

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28 INDIVIDUALS WITH PHYSICAL IMPAIRMENTS AS LIFE HACKERS? Analyzing Online Content to Interrogate Dis/Ability and Design Jerry Robinson

Most dictionaries define the word hack in the following ways: (1) to modify a computer program or electronic device in a skillful or clever way; (2) to break into a network, computer, file, etc. usually with malicious intent. Over the past two decades, we have witnessed the expanded use of the terms hack and hacker beyond its dictionary definition. Some human–computer interaction (HCI) and computer-supported cooperative work (CSCW) scholars, for instance, associate hacking with do-it-yourself, “maker culture,” and end-user innovation activities.1 Expanded use of the term hack is most evident in the phenomenon of life hacking. In 2004, Danny O’Brien coined this term to describe the unique ways programmers used technology to maximize productivity, increase efficiency and manage information overload.2 Now people commonly use this colloquialism in the context of just about any daily life practice imaginable. Googling the term life hack will yield millions of tips, tricks and shortcuts people leverage for a wide range of activities including cooking, cleaning, exercising, do-it-yourself automobile repair and health maintenance. This contribution explores the life-hacking activities of individuals with disabilities. O’Brien’s definition suggests life hacks can allow people to deal with the obstacles they encounter in a specific context through their skilled use of artifacts and environmental affordances. As it relates to this study, an affordance represents a possible action available to someone who is in a specific environment.3 This conceptualization is particularly useful when talking about life hacking, which essentially represents the identification, creation or exploitation of unique and highly contextualized courses of action. As inhabitants of a material world that can be inaccessible to them, individuals who live with physical impairments sometimes must choose between two options: wait for someone to address disabling circumstances or find alternative ways to do the things they want and need to do in life.4 Existing online content suggests that life hacking represents that alternative way for many individuals with disabilities. There are two growing streams of research that explore the life-hacking-related activities of people with physical impairments. One discusses the potential benefits and current barriers associated with individuals with disabilities making and hacking assistive technology using emerging rapid prototyping tools such as 3D printers.5 A second stream identifies several “in-the-wild”

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human–mobile device interaction techniques captured in existing YouTube video content or diary logs.6 Although in-the-wild interactions point to the life-hacking capabilities of individuals with disabilities, few studies pay significant attention to these self-directed efforts. This chapter adds to current discourses about “do-it-yourself assistive technology,” hacking, design and disability by examining online user-generated content about the life-hacking activities of individuals with disabilities.

Life Hacking: The Confluence of Disability, Technology and Daily Living The 2004 Assistive Technology Act Amendments define assistive technology as “any piece of equipment or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of a [person] with a disability.”7 This definition masks the reality that technology designed to be assistive can constrain an end user in his or her daily life.8 Scholars adopting both feminist hacking and science and technology studies (STS) lenses are beginning to theorize about hacking, technology and the body from a sociotechnical perspective.9 They use Haraway’s metaphor of the cyborg to interrogate contentions between normative constructions of gender, race or dis/ability and materiality, the gendered, racialized, dis/abled body and personhood.10 They frame hacking as an interrogation of the human/non-human, male/female and dis/abled dichotomies commonly embedded in technology and sociotechnical systems. Their work highlights the value of postcolonial perspectives that question power, authority, legitimacy, participation and intelligibility in top-down design approaches common in the assistive technology (AT)/durable medical equipment (DME) industries where designers possess significantly more wealth, economic strength and political influence than end users.11 Disability and technology are interrelated highly political constructs as evidenced by different disability models. The medical model not only equates disability with incapability, deficiency and dependency but also frames individuals who have them as aberrations from the norm of ablebodiedness.12 Its underlying assumption is that people with disabilities cannot take responsibility for their well-being. This assumption contributes to the continued prevalence of ableism, or abnormal/normal constructions of people with/without disabilities, respectively, that undergird practices, values, relationships, social interactions and self-perceptions.13 Ableism and medical model assumptions similarly serve as the foundation for corporate discourses commonly associated with accessible technology professional communities. Corporate discourses esteem scientific knowledge, professionalization and formal training over the views and perspectives of consumers.14 Individuals and institutions operating under corporate discourse assumptions frame disability as something to be professionally managed. Attempts to normalize individuals with disabilities and implicit assumptions made about them by able-bodied “experts” create the perception that people in these industries have little to no regard for the social, economic and other barriers many who live with physical impairments face in their everyday lives.15 The bedrock of the social model, on the other hand, is the idea that people who have impairments encounter disability because they live in an ableist and often inaccessible world.16 The social model acknowledges that social, political and other factors disable individuals with impairments and suggests the people whom medical and corporate discourses esteem often have a vested interest in controlling the disability narrative. It is within the context of a person’s everyday life that both technology use and life hacking are situated. The body, artifacts and various non-technological realities collectively constitute lived reality along with impairment. As a contextualized design-like consumption activity, life hacking represents direct intervention into the confluence of factors that create contentions in the everyday lives of individuals with disabilities. Both the social shaping of technology and 307

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affordance theory are STS frameworks that serve as useful lenses to unpack these activities. Products and related services are “socially shaped” in the sense that both mirror the current milieu as well as the imperatives of the people who make them.17 In the context of accessible design, this means the shared logics, perspectives and goals that guide mostly able-bodied designers may not always align with the wants and needs of disabled end users. The content individuals with disabilities post online about their life-hacking activities offer some insights into the everyday impact of design artifacts. Affordance theory, on the other hand, points to the diverse ways individuals with impairments respond to imposed disability. Rather than isolating technology from its use context, Gibson’s conceptualization of affordances makes contextually situated use in consumers’ natural environment the central focus.18 An affordance approach looks at life hacking in its proper material, social and cultural context and yields experientially grounded insights into the embodied capabilities and perspectives of individuals with disabilities.

Methodology and Data Sources The analysis described in this chapter used data posted on a blog, online forum and content website (Table 28.1). These platforms allow people to produce and consume user-generated content as editors, members, contributors or lurkers. The blog is co-managed by a woman who uses both crutches and a wheelchair. She identifies with the open-source community and is an advocate of “DIY hacking” by and for individuals with disabilities. She uses the blog to share personal DIY hacks as well as those of other people with disabilities. The content website contains several “tips and tricks” submitted by or on behalf of individuals with spinal cord injuries (SCIs). Two occupational therapists from Sweden maintain this site. People with SCIs develop most of the hacks featured on the website either independently or with assistance. The online forum is a space where individuals with mobility impairments asynchronously discuss products, technology issues, disability and everyday life concerns. Forum members have different physical disabilities that most often affect mobility, dexterity or both and many use DME such as electric or manual wheelchairs. The forum contains discussion threads dedicated exclusively to life hacking as well as unrelated threads on unrelated topics with embedded life-hacking content. The analysis omits all names and identifying information to preserve the anonymity of online contributors. Data from each site was content analyzed and coded using both inductive and deductive methods. Four constructs from Haddon’s Types of Innovation and Vincent and Haddon’s Innovative ICT use frameworks19 guided the initial round of deductive coding. The grounding for

Table 28.1 Data corpus

Sampling method Date range # of posts/threads Range # of entries (incl. comments) Average entry length

DIY blog

Mobility forum

SCI website

All content

All threads/with related content

10% of posts from 17 activity categories

July 2011–July 2013

April 2005–July 2014

114

106

1–11

2–58

1–6

4–5 full paragraphs

2–3 full paragraphs

2–3 short paragraphs

May 2008– June 2013 30

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Table 28.2 Deductive codes from types of innovation/innovatory use frameworks Category

Definition

Redesign Design Novel use

Re-designing/improving existing ICTs/applications Designing/developing new ICTs/applications Discovering new uses for ICTs

both frameworks is consumer/user creativity as exemplified in the innovative ways people appropriate and use information and communication technologies (ICTs).20 This focus is the core of a domestication research stream that examines how consumers not only appropriate technology and objects but also make them acceptable and familiar within the context of their everyday environment.21 Both frameworks categorize some of the innovative ways end users may relate to and interact with ICTs specifically, and capture how they appropriate and innovate using artifacts designed by someone else.22 I used three framework constructs that easily extrapolated consumer creativity with non-ICT artifacts. Given current popular use of the term life hack, the frameworks’ orientation towards the innovative activities of everyday consumers and the transcendence of framework constructs, it seemed appropriate to leverage them for this study (Table 28.2). After the deductive coding phase, I refined the construct names and definitions using coded examples, so they fit the DME, assistive technology and other accessibility-related artifacts implicated in the data. Next, I inductively derived additional categories for life hacks that did not fit into the refined ones. This process led to the life-hacking categories and definitions defined in the next section.

What Activities Constitute Life Hacking by Individuals with Impairments? Online content contained seven distinct types of life hacks, which fell into two categories. Objectcentered life hacks include innovations, modifications, bricolage and maintenance/repair activities. Activity-oriented life hacks include tactical, reappropriation and barter-reuse-share activities.

Object-Centered Life Hacks Object-centered life hacks always result in something tangible a person can leverage in his or her daily life activities. They require productive physical activities and one or more “raw materials.” Someone with a physical impairment uses the outcome to engage in an activity. That person’s in situ engagement in the underlying daily life activity, life-hacking effort or both inform design and development.

Modification I need it dark at night to be able to see well in the dark, my scooter got a piece of duct tape, that I made a flap with, to cover the LEDs, the [wheelchair’s] LED indicators are SO bright at night, that the glare of the brightness, would blind me.23 Modification life hacks are alterations to an existing object resulting in reconfigured or customized artifacts with greater accessibility, usability or usefulness than the original. Some of the words used to describe modification life-hacking activities included install, add, replace, attach and alter. 309

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A modification life hack alters an object to make it fit someone’s physical capabilities, needs and preferences. For instance, two forum contributors took wheelchair seat cushions designed to prevent pressure sores and in the words of one of them, “shaved the center contour to make transfers easier.” Online contributors modified a broad range of objects including computer hardware, motorized wheelchairs and wheelchair accessories, ceiling lifts and physical spaces. A member of the forum who had dexterity limitations described how he modified his credit card: I don’t have much pinch strength so I drilled a small 1/32 hole at the edge of my credit card and used fishing line to make a loop that I hook a finger into. I use that for the card insert at gasoline pumps.24 The blog co-editor kept making unintentional zoom and pinch gestures while using the trackpad on her new MacBook and resolved this dilemma as follows: “I took a DVD case, regular scissors, a pen and a piece of paper and scotch tape. In less than five minutes, I had a new trackpad ‘mouse button cover.’” One SCI website entry described how someone with limited dexterity attached a key ring to an oven door using a cable tie and leveraged it as an alternative interface to close the door.

Innovation I have installed a pair of individual forearm crutch holders on the back of my chair, using 2" schedule 40 plastic pipe and some stainless U bolts. It took about 20 or so minutes and less than 5 USD in parts. So very handy!!!25 Innovation life hacks are newly created artifacts that either did not exist previously or did not exist in their current form and function. Like other types of life hacks, innovations require an attribute rarely accorded to individuals with disabilities: ingenuity. In addition to the forearm crutch carry-holders made by the forum member quoted above, the blog co-editor said she “DIY hack[ed] bicycle crutch holders made from PVC pipe.” Individual needs, wants and capabilities inspire innovation life hacks. In the case of the forearm crutch carry-holders, both online contributors needed a way to manage walking aids while utilizing alternative forms of mobility. The blog co-editor linked this life hack to a capability the typical bike manufacturer might not foresee: “I can ride a bike, I just can’t walk too well.” Other innovations included a mouth stick someone made from wooden dowels, electrical tape and a finger cot that a guest blogger used to type on a keyboard. A forum member designed 3D-printable electric wheelchair joystick swingaway mounts, and an SCI website entry described how a person with dexterity challenges developed a “homemade handle made of Cernit clay that can be attached to objects such as telephone receiver, remote control or mobile phone.”

Bricolage A small specially designed assistive device for persons without active hand function, which makes it possible to take a bottle out of the cooler and to transport it … The “beer retriever” is a small Plexiglas plate with a section cut out for the bottleneck. A plastic ring sits on the plate through which the user inserts a finger when he wants to grasp the bottle.26 A bricolage life hack is a concatenation of two or more disparate objects that results in something more useful and usable than the individual items. Bricolage life-hack outcomes allowed contributors 310

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to leverage the affordances of the supplanted objects, environment or both. Online contributors described their bricolage activities using verbs such as make, glue, attach, design, sew and wrap. One entry on the SCI website described a set of typing tools consisting of rubber bands wrapped around the eraser ends of two pencils. The blog co-editor made “crutch pockets” from “thin cardboard videotape boxes [she] covered in tape [and] anchored firmly to the crossbar and the sides of the crutches, so they don’t flop around like some cloth and Velcro pockets [she has] seen.”

Maintenance/repair Sometimes [wheel] bearings that are heavily rusted can be removed by heating the bearing seat with a torch, but you REALLY have to know your stuff before you try that.27 Maintenance/repair life hacks are do-it-yourself (DIY) efforts to fix, maintain or repair accessibility products. Common maintenance/repair activities include replacing, adjusting, cleaning, (re)programming, overhauling, troubleshooting and diagnosing equipment issues. Maintenance/repair life hacks were most common on the online forum that afforded asynchronous communication and collaboration. Multiple contributors had different ways of addressing an issue. For instance, various contributors shared different ways to charge electric wheelchair batteries, repair or replace joystick knobs and clean their wheelchairs. Additionally, forum members regularly shared advice and distributed technical information about DME either in response to questions from others or for informative purposes.

Activity-Centered Life Hacks Unlike object-centered life hacks that involve doing something to or with a product before using it, activity-centered life hacks are synonymous with doing an activity itself, albeit in a unique, personalized and goal-oriented way. An action-oriented life hack does not exist in visible form until someone enacts it. Therefore, the affordances that person leverages depend on factors such as his or her physical capability, situational awareness and the immediate availability and usefulness of objects.

Tactical I bought a new sling, and the quick release buckle was beyond my hand strength, so I put one chopstick in each side and squeezed. It popped right open.28 Tactical life hacks are individualized ways of interacting with the objects needed to complete a task. They are human-to-artifact and artifact-to-artifact interactions that are unique to an individual with a physical impairment. Tactical life hacks often look like individualized artifactenabled task-completion methods. For instance, one forum contributor said, “I’m very dependent on [my wheelchair’s] front casters to pull my feet up onto to give me [body] re-positioning leverage.” A tactical life hack is both object-enabled and goal-oriented and may accompany perseverance, resourcefulness and social innovativeness. They can arise out of convenience, necessity or both and often result from someone’s opportunistic utilization of objects he or she can access and leverage using the physical capabilities he or she possesses.

Reappropriation The sliding bath bench works great except for the twist needed. Using a standing lift, the caretaker put me on the end of the bench, but I need to twist. Now I noticed they do sell these with swivel seats, but the darn swivel seat precludes access to body parts 311

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that the cut-out provides. So, to solve the twist issue, I bought a 24 USD, 15-inch TV and planter-type Lazy Susan that works great as a twist gadget on the end of the sliding bath bench with cabinet liner to preclude slipping.29 A reappropriation life hack is the utilization of objects originally designed for use in one context in a different one. Reappropriations entail repurposing objects for someone’s individual needs and purposes. Sometimes the novelty in a reappropriation is blatant, such as the Lazy Susan example above. Others are somewhat subtle, such as this one posted on the SCI website: “A hanging scale/spring balance is suspended between the ceiling lift and sling and is used as a scale [for someone with quadriplegia].” An individual with a physical impairment derives needed or desired benefit from products via reappropriation life hacks.

Barter-Reuse-Share I have an H frame Bounder [electric wheelchair] that’s sitting idle in my garage for five years now, it ran fine, batteries just went dead when I got another chair. I’d like to sell it. Group 27 batteries, tilt, belt drive.30 Barter-reuse-share life hacks are (often) unregulated consumer-to-consumer or consumer-tobusiness transactions conducted to acquire, sell or share used DME or parts and accessories. As a member of the open-source software community, the blog co-editor regularly talked about the need for an open-source mind-set within the disability community when it comes to collaborating on projects and sharing DIY inventions. A thread on the forum serves as a record of one member’s efforts to sell his old electric wheelchair to another member. Several forum contributors said they bought and sold used accessibility equipment online via eBay, Craigslist or offline at local thrift stores. Others purchased used electric wheelchair parts and accessories either direct from non-OEM suppliers or off websites like eBay and Craigslist.

Reflections and Discussion Several online contributors framed their activities as ways to cope with difficult economic realities or alternatives to dealing with insurance companies, parts manufacturers or DME professionals. For instance, one forum contributor stated that DIY fabricating and installing electric wheelchair parts was a necessity for individuals with disabilities like him who “live on fixed incomes.” One forum contributor engaged in barter-reuse-share and maintenance/repair life hacks to maintain his old uninsured electric wheelchair since he could not afford a new one out of pocket and suspected his doctors and insurance provider would not pay for a new one. He framed his barter-reuse-share life hacks as alternatives to “l[ying] in bed and wait[ing] for people who really don’t care” to address his mobility needs. For these and other contributors, life hacking coincided with taking control and making things happen instead of relying on professionals to do it for them. Online life-hacking content posted by and about individuals with disabilities in many ways embodies social model thinking. It allows people with disabilities to share details about themselves and their daily lives from their unique vantage point. This content also serves as a record of the capability, creativity and agency individuals with disabilities exhibit in various daily life contexts. Life-hacking originality and sophistication varied depending on the person, his or her capabilities and the situation warranting the life hack. Nevertheless, contributors across these spectrums commonly linked skill, ability and agency to their life-hacking efforts. For instance, the blog co-editor and several forum contributors used the term “do-it-yourself” in conjunction 312

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with their maintenance and repair life hacks. The blog co-editor fittingly referred to her attempts and desire to repair and adapt her wheelchair as “want[ing] root on [her] own accessibility.” A forum contributor referred to himself and others who can rebuild, remanufacture, and adapt their chairs according to their needs and wants as do-it-yourselfers. Maintenance/repair, innovation and other life-hacking activities captured online challenge medical and corporate model assertions that view disability as something to be managed by a third party and people with disabilities as individuals who do not possess agency or the ability to address issues for themselves. It also points to the value of the experiential knowledge individuals with disabilities gain as they live with impairment and encounter both non-technology-related consumption issues and the downstream effects of ableist accessible design-related practices.

Conclusions and Implications DiSalvo describes critical making as actively “materializing the politics of design,” where end users determine function, form, practice and values for themselves through their design-like activities.31 This engaged political work leads to the development of products that position the desires, perspectives and commitments of individuals with disabilities ahead of those of ablebodied researchers and designers. The overall import of the online content suggests that accessible technology products, professionals and policies disabled people more than their physical impairments. Interestingly, some contributors admitted to performing maintenance/repair life hacks forbidden by warranty and service agreements to circumvent DME policies and procedures, or both. Maintenance and repair life hacks often represented reactions against products that failed to meet consumers’ real needs and service providers who did not consider their perspectives. Some forum members engaged in barter-reuse-share life-hacking activities to obviate the need to pay full price for expensive equipment or deal with the red tape they felt insurance providers imposed on individuals with disabilities. Others did so to reduce their dependence on costly, slow or lowquality DME maintenance and repair services or expensive DME parts. Several online contributors expressed outright disdain for DME professionals, who according to one forum contributor, “want to retire [from] their first job or take advantage of folks like us, who are the least able to support them.” Another forum contributor referred to DME professionals as individuals who “don’t have a clue … don’t listen, or don’t give a damn.” Overall, online content suggests that economic policies and professional practices circumscribe the use of technology and sometimes exacerbate effects of impairment. Medical and corporate discourses are deficit based and frame technologies and services as impairment fixes. Life hacking, however, uncovers many nonimpairment and non-technological factors that create barriers and opportunities for individuals with impairments that are hard to discover via traditional design research methods. Life hacking favors the same kind of political work described by DiSalvo. Individuals with impairments both challenge traditional disability narratives and empower themselves to live self-determined lives free from undue influence from predominantly non-disabled people via their life hacking and related online activities. Two tenets of DIY as it relates to social movements are taking responsibility for what happens instead of relying on others and determining the rules for what is acceptable beyond the gaze of powerful entities seeking to make those determinations for everyone.32Online platforms containing life-hacking content posted by and about individuals with physical impairments seems to point to an informal DIY-enabled social movement. These individuals shared their ways of addressing challenges and exploiting opportunities using their ability to find, create and leverage affordances that complement their physical capabilities. Each person’s ability to life hack, insights about the material world and criticisms of the way non-technological forces limited them in their daily lives constituted his or her efforts. Collectively, contributors used online platforms to 313

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disseminate and find contextualized yet translatable knowledge about design and life with a disability. Accessible design communities considering postcolonial approaches or wanting to understand end users and their complex sociotechnical environments would be wise to pay attention to the growing amount of this online content and seek to productively engage the individuals behind it.

Notes 1 Susann Wagenknecht and Matthias Korn, “Hacking as Transgressive Infrastructuring: Mobile Phone Networks and the German Chaos Computer Club,” in Proceedings of the 19th ACM Conference on ComputerSupported Cooperative Work & Social Computing, CSCW ’16 (New York: ACM, 2016), 1104–1117; Morgan G. Ames, Jeffrey Bardzell, Shaowen Bardzell, Silvia Lindtner, David A. Mellis and Daniela K. Rosner, “Making Cultures: Empowerment, Participation, and Democracy—Or Not?” in CHI ’14 Extended Abstracts on Human Factors in Computing Systems, CHI EA ’14 (New York: ACM, 2014), 1087–1092; Stacey Kuznetsov and Eric Paulos, “Rise of the Expert Amateur: DIY Projects, Communities, and Cultures,” Proceedings of the 6th Nordic Conference on Human-Computer Interaction: Extending Boundaries (Reykjavik: ACM, 2010), 295–304. 2 Tracey Potts, “Life Hacking and Everyday Rhythm,” in Geographies of Rhythm: Nature, Place, Mobilities, and Bodies, ed. Tim Edensor (Burlington, VT: Ashgate, 2010), 33. 3 Brian P. Bloomfield, Yvonne Latham and Theo Vurdubakis, “Bodies, Technologies and Action Possibilities: When Is an Affordance?” Sociology 44, no. 3 (2010): 415–433. 4 Alan Roulstone, Disability and Technology: An Interdisciplinary and International Approach (London: Palgrave Macmillan, 2016). 5 Jonathan Hook, Sanne Verbaan, Peter Wright and Patrick Olivier, “Exploring the Design of Technologies and Services That Support Do-It-Yourself Assistive Technology Practice,” in Proceedings of DE2013: The Fourth Annual Digital Economy All Hands Conference (Salford, UK: n.p., 2013); Amy Hurst and Shaun Kane, “Making ‘Making’ Accessible,” Proceedings of the 12th International Conference on Interaction Design and Children (New York: ACM, 2013); Amy Hurst and Jasmine Tobias, “Empowering Individuals with Do-It-Yourself Assistive Technology,” Proceedings of the 13th International ACM SIGACCESS Conference on Computers and Accessibility (New York: ACM, 2011); Jonathan Hook, Sanne Verbaan, Abigail Durrant, Patrick Olivier and Peter Wright, “A Study of the Challenges Related to DIY Assistive Technology in the Context of Children with Disabilities,” in Proceedings of the 2014 Conference on Designing Interactive Systems, DIS ’14 (New York: ACM, 2014), 597–606; Ben Leduc-Mills, Jaymes Dec and John Schimmel, “Evaluating Accessibility in Fabrication Tools for Children,” in Proceedings of the 12th International Conference on Interaction Design and Children (New York: ACM, 2013), 617–620. 6 Lisa Anthony, YooJin Kim and Leah Findlater, “Analyzing User-Generated YouTube Videos to Understand Touchscreen Use by People with Motor Impairments,” in Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, CHI ’13 (New York: ACM, 2013), 1223–1232; Shaun K. Kane, Chandrika Jayant, Jacob O. Wobbrock and Richard E. Ladner, “Freedom to Roam: A Study of Mobile Device Adoption and Accessibility for People with Visual and Motor Disabilities,” in Proceedings of the 11th International ACM SIGACCESS Conference on Computers and Accessibility, (New York: ACM, 2009), 115–122. 7 Sandra Alper and Sahoby Raharinirina, “Assistive Technology for Individuals with Disabilities: A Review and Synthesis of the Literature,” Journal of Special Education Technology 21, no. 2 (2006): 47–64. 8 Roulstone, Disability and Technology. 9 Laura Forlano, “Hacking the Feminist Disabled Body,” Journal of Peer Production 8 (2016), http://peerpro duction.net/issues/issue-8-feminism-and-unhacking/peer-reviewed-papers/hacking-the-feminist-disabledbody; Laura Forlano and Katrina Jungnickel, “Hacking Binaries/Hacking Hybrids: Understanding the Black/White Binary as a Socio-Technical Practice,” Ada: A Journal of Gender, New Media, and Technology 6 (2015) http://adanewmedia.org/2015/01/issue6-forlano-jungnickel; Lauren M. Britton and Bryan Semaan, “Manifesting the Cyborg Through Techno-Body Modification: From Human-Computer Interaction to Integration,” in Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems, CHI ’17 (New York: ACM, 2017), 2499–2510. 10 Britton and Semaan, “Manifesting the Cyborg”; Forlano, “Hacking the Feminist Disabled Body”; Forlano and Jungnickel, “Hacking Binaries/Hacking Hybrids.” 11 Lilly Irani, Janet Vertesi, Paul Dourish, Kavita Philip and Rebecca E. Grinter, “Postcolonial Computing: A Lens on Design and Development,” in Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, CHI ’10 (New York: ACM, 2010), 1311–1320.

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12 Gillian Fulcher, Disabling Policies? A Comparative Approach to Education, Policy, and Disability, Disability, Handicap, and Life Chances (New York: Falmer Press, 1989); Gerard Goggin and Christopher Newell, Digital Disability: The Social Construction of Disability in New Media (Lanham, MD: Rowman & Littlefield, 2003). 13 Gregor Wolbring, “The Politics of Ableism,” Development 51, no. 2 (June 1, 2008): 252–258. 14 Goggin and Newell, Digital Disability. 15 Goggin and Newell, Digital Disability; Roulstone, Disability and Technology. 16 Gerard Goggin, “Disability and the Ethics of Listening,” Continuum 23, no. 4 (August 1, 2009): 489–502. 17 Wiebe E. Bijker and John Law, eds., “General Introduction,” in Shaping Technology/Building Society: Studies in Sociotechnical Change (Cambridge, MA: MIT Press, 1994), 1–14; Roulstone, Disability and Technology. 18 Roulstone, Disability and Technology. 19 Leslie Haddon, “The Innovatory Use of ICTs,” in Everyday Innovators: Researching the Role of Users in Shaping ICTs, ed. Leslie Haddon, Enid Mante, Bartolomeo Sapio, Kari-Hans Kommonen, Leopoldina Fortunati and Annevi Kant, Computer Supported Cooperative Work, vol. 32 (Dordrecht: Springer, 2005), 54–66. 20 Haddon, “The Innovatory Use of ICTs.” 21 Roger Silverstone and Leslie Haddon, “Design and the Domestication of Information and Communication Technologies: Technical Change and Everyday Life,” in Communication by Design: The Politics of Information and Communication Technologies, ed. Robin Mansell and Roger Silverstone (Oxford: Oxford University Press, 1996), 44–74. 22 Haddon, “The Innovatory Use of ICTs.” 23 Forum contributor. 24 Forum contributor. 25 Forum contributor. 26 SCI website entry. 27 Forum contributor. 28 Forum contributor. 29 Forum contributor. 30 Forum contributor. 31 Carl DiSalvo, “Critical Making as Materializing the Politics of Design,” Information Society 30, no. 2 (March 1, 2014): 96–105. 32 Matt Ratto and Megan Boler, DIY Citizenship: Critical Making and Social Media, 1st ed. (Cambridge, MA: MIT Press, 2014).

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29 INTERDEPENDENCE IN COLLABORATION WITH ROBOTS Eleanor Sandry

Introduction In his final speech to the Australian National Press Club the outgoing disability discrimination commissioner, Graeme Innes, noted that people with disabilities “would be lifters, if there were not barriers in society which cause [them] to be leaners.”1 The terms lifter (people who provide monetary, emotional or physical support) and leaner (those who need that support) were introduced into Australian politics in 1942 by Robert Menzies,2 and revived in 2014 by Treasurer Joe Hockey in his budget speech, which positioned lifters as workers who pay taxes and leaners as those who rely upon government benefits.3 In responding to Hockey, and others in the incumbent Australian government, Innes rejected this oversimplification of people’s lives emphasizing instead the importance of “providing people with disability with choice and control,” thereby giving them opportunities to move from being leaners to becoming lifters.4 This chapter considers how robots can support people with disabilities in ways that can facilitate this move, while also examining some of the ethical and practical issues that arise when robots are positioned as assistive or, in some cases, even as caregivers. All members of society are likely to be leaners from time to time, increasingly so as they age. It is therefore unsurprising that a number of the robots described below have been designed with elderly people in mind. This also means that research into these developments is centered on considerations of older people’s lives and needs. By broadening the discussion to engage with perspectives from disability studies, this chapter examines a wider variety of perspectives on communication, independence, autonomy and control over one’s living circumstances at any age. Many different forms of technological device are now described as robots. This term appears in marketing information, technology and mainstream media reports, whether the machines under discussion are autonomous, semi-autonomous or rely upon the continuous direction of a human operator. This chapter concentrates on analyzing devices designed to help people that operate, at least some of the time, autonomously or semi-autonomously alongside those people in a physical environment. It therefore sets aside discussions about physically instantiated machines wholly under the wired or wireless control of a person at all times, as well as software assistants, such as Apple’s Siri, Google Now and Amazon’s Alexa.

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Autonomous Assistive Robots and Robot Carers No longer confined to science fiction, robots are increasingly becoming a part of many people’s everyday lives. While the robots most commonly found in people’s homes may still be toys, their more functional counterparts, such as robotic floor, pool and gutter cleaners, are rising in popularity around the world. Robotic floor cleaners are still relatively expensive when compared with other vacuum cleaners or the humble floor mop, but they promise to save people from the drudgery of domestic labor or the expense of employing a person to clean the house. For nondisabled people, these robots are convenient tools that take over a hated task leaving more time for leisure. In contrast, for people with disabilities who find cleaning difficult (or impossible) to do themselves, these robots offer a valuable opportunity to take more personal control over their living spaces. Robotic floor cleaners could in fact easily be classified as assistive technologies; however, this terminology is more often used to refer to machines designed specifically to help people with disabilities of all ages, including elderly people where the aging process has resulted in some level of physical or mental impairment. The most complex and expensive assistance robots are large machines that navigate physical environments entirely on their own, such as the Carebot (Gecko Systems) and the Care-o-bot (Fraunhofer).5 Both of these robots are still being trialled and used for research, and it is somewhat difficult to ascertain how commercially viable they might be in the future. The Carebot is designed to offer non-physical assistance, such as positional monitoring and fall detection. It can call for help if required and remind people to do things. In contrast, the robotic arm or arms on the Care-o-bot (versions 3 and 4) suggest the potential for these robots to help people with physical tasks around the home in the future. When combined with a smart home environment and body sensors, other research, such as the Mobiserv Project (now completed), demonstrates how care robots can be used to monitor people at a more detailed level, keeping records of vital signs, as well as drinking, eating and movement patterns.6 Robots can be programmed to use this information, combined with speech and screen interfaces, to suggest when people should take medication, fluids, food or exercise, based on guidelines set by human carers. Screens on robots also enable mobile teleconferencing, allowing people to make and answer video calls wherever they are in their homes. The development of robots designed to communicate with humans, such as the care robots discussed above, can be analyzed in many ways. From a cybernetic theory perspective, the robot can be thought of as a medium, since it is a “technology that translates perception, makes interpretations, and performs expressions.”7 An alternative perspective positions robots alongside television and computers as forms of mediated life that people easily equate with real-life experiences. For example, “media equation” theory suggests that, whatever their form, robots will be interpreted by people in “fundamentally social and natural” ways.8 Videos showing people communicating with care robots indicate that they do interpret the robots as social communicators, although they may not be as polite to the robot as they would be to another person. In most cases though, a care robot is not only interpreted by people as a communicator in its own right, but also recognized as a medium through which they can communicate with other people using a video interface. The Care-o-bot uses voice and gestural communication channels alongside a touch-screen interface, while the Mobiserv Project robot just used voice and a touch screen. In contrast, the CareBot has a voice interface, but its screen appears mainly directed towards enabling video calls with family members, carers and doctors. Promotional videos for the Care-o-bot and CareBot show both the robots relying on voice recognition and production to communicate with people much of the time. While the programming of spoken communication interfaces is improving rapidly (as seen in software robots such as Siri), it is still a challenging task that may slow the

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introduction of these robots into real-world (as opposed to trial) contexts, with considerable difficulties in recognizing local accents, speech styles and multiple languages. It should also be noted that, to operate well for people with impairments that affect their ability to hear and/or speak, these autonomous robots will need to support a wider range of communication channels, as is seen in the semi-autonomous assistive robotic devices discussed in the next section. In addition to the challenges of supporting flexible human–robot communication, a focus on making these robots fully autonomous and the problems of enabling robust real-world movement, dexterity, perception and precision identification of objects, complicates their deployment into everyday spaces, as opposed to specially constructed robot-friendly environments. In spite of these difficulties, and the likely to be high commercial cost of these robots, the Mobiserv Project website suggests that robots capable of monitoring people and providing personal assistance are designed “to offer home care for (semi-) independent living with a focus on health, nutrition, well-being, and safety.”9 This raises the question of what (semi-)independence might mean to both carers and those for whom they care. It also raises ethical issues in relation to positioning robots as replacements for human carers, a move that some researchers argue might well reduce people’s access to meaningful human social contact involving face-to-face conversation and physical touch.10 While these sorts of robot have the potential to increase people’s self-reliance, in both cognitive and physical terms, the high level of monitoring and recording of information they perform and the need to report this information to human carers, also lead to questions about how this might impact upon the privacy and rights of the person living with the robot,11 issues that may cause particular concern for people with disabilities, disability-rights activists and researchers. People’s privacy worries are likely to become more pressing when these types of autonomous care robots are deployed in real-world situations in people’s private homes as well as in hospitals and other care environments.

Semi-Autonomous Assistive Robots More readily available examples of assistive robots are semi-autonomous wheelchairs and robotic manipulators that can attach to wheelchairs or fixed furniture. Some of these robots are very specialized, for example My Spoon (SECOM) and the Mealtime Partner (Assistive Innovations), are both specifically designed to allow people with restricted mobility of their arms and hands to feed themselves.12 In other cases, assistive robots are based on broadening the usefulness of existing nonautonomous electric wheelchairs and manipulator arms. These robots are designed to enable people to use such machines, even when controlling the whole movement, or a precision part of the movement, is not possible. Examples of assistive robots of this sort this are the SafePath Wheelchair (being developed by Gecko Systems), the iARM robot (Exact Dynamics) and the JACO robotic arm (Kinova).13 As was the case for stand-alone care robots, these machines increase people’s ability to do tasks for themselves with the help of technology, but they are less likely to be regarded as replacements for human carers, being more clearly positioned as semi-autonomous assistants. These more specialized robots form part of an assistance network for people, with a focus on enabling them to fulfil their own physical needs. Factors that are important with this type of robot relate to the precise way in which the robot is designed to work with people, the level of control the person retains and the smooth integration of user direction and robot response, whatever interface (joystick, keypad, voice, screen, button, foot switch, sip-and-puff, etc.) is used to communicate the user’s needs. While communication with these robots might be thought of as following a simple command–response structure, with specific interface commands triggering specific robot actions, as discussed later, the capability of this type of assistive device may only be fully realized if a more flexible and complex communicative relation is reached, which enables a robot to take partial responsibility for completing tasks in a collaborative interaction with the person. 318

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The use of semi-autonomous robots to provide physical and cognitive assistance has the potential to make it easier for people often positioned as leaners, such as elderly people and people with disabilities, to become recognized as lifters in more situations (to use Innes’ terminology). However, these robots nonetheless raise similar issues to the autonomous robots discussed above in relation to the ethics of care that involves machines instead of people and perceptions of control within interactions involving humans and robots. In addition, although their primary aim is not to monitor people, even these robots have the potential to collect information that could be shared with others. Some of this information, resulting from the use of global positioning systems or cameras, might be essential for the successful operation of the robot; for example, it might be needed for navigation or to enable the semi-autonomous movement of a manipulator being used to locate and pick up a specific item. However, if the information is stored, the user of the robot may well want to retain control over any decision to share this information with others. A number of scholars have considered the ethical and information access questions that might arise alongside the increased use of care and assistive robots, mainly in relation to support for elderly people.14 Some of their ideas can be extended to consider the possible impact on people with disabilities as well, but these questions also deserve careful consideration from the perspectives offered by disability studies, which may pinpoint different focal concerns. A key question asked by disability studies scholars, is what it means to live independently, retaining a level of autonomy in light of a recognized need for assistance that might involve calling upon other people, animals and/or machines for help.

Independence, Autonomy and Care Robots The idea of what independence constitutes for people with disabilities, and therefore also elderly people who develop cognitive or physical impairments as they age, depends on one’s personal perspective, training and experience. Solveig Reindal, for example, notes that care professionals and the disabled people for whom they care define dependence and independence differently from one another. She suggests that this may in part be due to the way in which disability itself is understood by these groups.15 In particular, care professionals tend to measure independence against a person’s ability to care for themselves without the help of others, a judgement that may be reliant on adopting the medical model of disability. The medical model has been strongly criticized in disability studies scholarship,16 but continues to shape policy around, and therapy for, people with disabilities in many countries. As might be expected, the model concentrates its attention on disabilities as “inherently pathological conditions that can be objectively diagnosed, treated, and in some cases ameliorated.”17 Disability within this framework is defined as the problem of an individual subject, and the goal of rehabilitation is to maximize the “functional independence and self-sufficiency” of people with disabilities.18 From this perspective the development of assistive technologies, including robotic technologies, should focus on allowing a person with disabilities to live within the world as independently and as safely as possible. In this context, independence is most often defined in relation to avoiding the need to ask for human help. Unlike many care professionals, people with disabilities are more likely to recognize independence as stemming from having the ability to gain assistance, whenever and however they might require it, in order to live their lives as they wish. This sense of independence is reliant on “a mind process that is not contingent on having a normal body,” and is strongly related to retaining a sense of personal autonomy in one’s life.19 As Reindal argues, whether one understands independence as stemming from self-reliance or from having the autonomy to ask for and to receive assistance whenever necessary, both perspectives “individualize independence” by reinforcing a “modernist view of 319

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the subject,”20 a view that is also central to the medical model of disability. When a robot is recognized as a carer or as assistive, people’s reliance on the machine, because it is not another person, does not detract from judgements about the level of independence a care receiver attains and may also enhance that person’s sense of their own personal autonomy. The use of autonomous care robots, such as the Carebot or Care-o-bot, can be framed as removing people’s everyday reliance on other humans for assistance, but they may nonetheless undermine people’s independence by sharing stored information—on issues such as falls, forgotten medication or less than ideal eating and drinking patterns—with family members or remote human caregivers. In addition, the use of robots might reduce opportunities for care receivers to reinforce their autonomy by asking for, and receiving, human assistance when that is what they would prefer. As Bohlen and Karppi note, robots have the potential to change health care by redefining “not only the dependencies between machines and people but also the concept of care” itself.21 More broadly, the use of the Internet for self-diagnosis, as well as the introduction of “medical ‘expert’ systems” and care robots, might mean that care receivers “miss the expertise and skills of the physician who would examine them and rely on their visual and tactile, embodied understanding, their knowhow” to provide assistance.22 The idea that expert knowledge can be formalized, and that a record of electronic monitoring can hold all relevant information about a person, overlooks the value of a human carer’s “personal, practical, and tacit knowledge.”23 A related concern, is the loss of a “deep sense” of care, through a “focus on the mechanical delivery” of medication, information or advice,24 alongside the “utilitarian” touch of a robot that lifts or bathes a person, completing the task with skill but lacking the “affective touch” of a human caregiver and level of emotional communication that involves.25 Parviainen and Pirhonen argue that “robots can take care” of people, “but they can’t care about them.”26 In spite of these concerns, the designers of more complex autonomous care robots discuss the ways their robots can engage socially with the people for whom they care, while some research suggests that “older adults expect a robot to be more like an assistant or an appliance rather than a friend.”27 Nevertheless, it seems that in general, while the importance of communication in the form of information that can be collected, transmitted and stored digitally and without human intervention is clearly recognized, the value of embodied, experiential understandings, cultural nuance and affective contact between caregivers and receivers is more easily overlooked. It is therefore good to note that care robots can be positioned not as replacements for human caregivers, but rather as caregiving assistants. By completing “the hard physical work” such robots enable human carers to focus on “embodied social interactions” with those for whom they care.28 When deployed in this way, robots become part of a “care triangle,” supported by “human–robot–human interaction” with different roles for “caregiver, care receiver and robot.”29 This perspective introduces the idea that care and assistive robots have the potential to make care receivers “feel that they have more relational autonomy in care practices” as part of a triangle of interaction within which affective communication and touch remain an essential element.30 Importantly, “relational approaches to autonomy grant that individuals’ actions are inevitably linked to the affordances of the agent’s environment.”31 Thus the idea of “relational autonomy” goes beyond individual autonomy to embrace the importance of “care, interdependence, and mutual support,”32 key aspects of the social model of disability.

Interdependence, Partnership and Collaboration with Robots as Agents In contrast with the medical model, the social model moves away from situating disability within the individual, to argue that disability is the effect of “discriminatory social practice, social reactions or ignorance.”33 At times, the focus on social factors seems to imply that “all restrictions of activity experienced by people with impairment are caused by social barriers.”34 More often 320

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though, researchers who adopt the social model, in particular those that mobilize critical and feminist perspectives, continue to recognize the impact of individual impairments, while arguing that the ways cultural and societal norms discriminate against bodies and minds that are not those of the ideal human raise important issues.35 For example, Rosemarie Garland-Thomson argues that the interaction between bodies and their environment, societal situation and specific interactional context results in “varying degrees of disability or able-bodiedness, or extra-ordinariness.”36 This perspective acknowledges not only the difficulties that people with disabilities may experience living in a world often designed with non-disabled bodies in mind, but also the potential they have to highlight new and extra-ordinary ways to live in that world. In some cases this may well involve engaging with technology in unusual and inventive ways. Although researchers employing social models of disability, including more critical or feminist articulations of these theories, do discuss ideas of independence, Reindal suggests that the stress they place on the embodied and embedded subject makes them particularly compatible with a concept of “interdependence,” within which “independence is partnership.”37 The conception of partnership is reiterated by Donna Goodwin, who explains that interdependence “can be seen in relationships that lead to a mutual acceptance and respect as diverse people come together in a synergistic way to create environmental and attitudinal supports to foster full participation in preferred activities.”38 Adopting the concept of interdependence therefore highlights the underlying links between people with disabilities, the help they request and receive from others and their sense of autonomy. It also opens up ways to consider human interactions with assistive robots as more than tool use, acknowledging the semi-autonomous or autonomous nature of these machines as people collaborate with them to complete everyday tasks. In contrast with the larger care robots, semi-autonomous assistive robots such as robotic arms are rarely seen as undermining the position of care receivers, or reducing their access to human social contact. Instead, individualized ideas of independence and autonomy tend to drive the assumption that wherever possible the person should be in full control of the robot. Unfortunately, positioning a robot as a tool in this way makes it difficult to accept the idea that collaborating with a robot, such that it can contribute a level of control for its actions, might make the task easier to complete. Research relating to the development of robotic electric wheelchairs and manipulator arms has found that the “users of assistive devices overwhelmingly prefer to cede only a minimum amount of control authority to the machine.”39 It is nonetheless important to recognize the need to make these assistive machines easier for people with even a “severe motor impairment” to control.40 This can be achieved by transferring “some of the control burden … from the user to the machine,” so that these machines become better classified as robots that are “able to accomplish tasks autonomously, in some capacity.”41 Alongside this, it is vital that the person using the robot can exert the level of control that they want, or are able, to retain through a variety of communication interfaces with the machine. Brenna Argall describes a “control spectrum” for robots, from “full manual control” to “fully automated control,” the latter made possible by developing autonomous robots.42 Between these two extremes exists “a continuum of shared control paradigms, that blend—whether by fusion or arbitration—the inputs from manual control and automated controllers.”43 Ideally designers, and the users of these robots, want to locate the “sweet spot,” “where sharing control makes the system more capable than it is at either of the continuum extremes.”44 Alongside this, it is vital to achieve a situation “that is both effective at accomplishing tasks and accepted by the human user.”45 This involves creating assistive robots “that make the human more able … but still ultimately in control through shared control paradigms that leverage machine learning to be customizable to and teachable by the user.”46 In practice, Argall has found that managing the flexible allocation of control involves creating an assistive robot that alters its level of trust in the 321

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human operator based on past experience and the level of “agreement between user and automated controller commands.”47 From this perspective, the interaction between human and assistive robot does not position the robot as a tool, but rather as an agent, albeit one whose actions are carried out under the overarching control of a human. It seems likely that retaining a sense of control over the robot reduces the potential of feeling wholly dependent on the machine, which might well undermine the sense of independence and autonomy that such a machine is designed to give to its user. In some situations, it might be necessary for a robot to increase its autonomy; an action that would allow a robotic wheelchair to follow a person or create a convoy with other wheelchairs, follow a sidewalk or wall or renegotiate a previously followed path (or reverse that path to return home).48 However, in general, robotic wheelchairs and manipulator arms will work more effectively when their human user is able to exert control over some aspects of the movement, thus sharing the burden of control back to the user.49 The balance point of control between robot and user may depend on the environment as well as the task at hand, but can also be altered according to the energy level of the user, to increase robot autonomy as the person becomes fatigued. The idea of balancing control to maximize the usefulness of the machine emphasizes the way in which human and robot are interdependent and must work together flexibly to get things done. While it might seem radical to suggest that assistance robots should be regarded as a kind of agent with which people can collaborate, there is evidence that, when this perspective is taken, humans gain more from their interactions with autonomous or semi-autonomous machines by combining their abilities with those of the machine in flexible and adaptive ways. A consideration of the details of human interactions with robotic floor cleaners provides a simple example of the importance of this type of collaboration. While these robots are broadly autonomous, as already noted above, they nonetheless require regular assistance from humans. The robot may sometimes request this help directly, for example through the use of light or sound indicators showing the dust container is full. However, on other occasions the needs of these robots are interpreted by their owners from less direct signals, for example through the noise they make when stuck beneath a piece of furniture.50 Without the assistance of a person, these robots are unable to complete the task they are designed to undertake with any great success. In general, people who treat floor-cleaning robots as tools are more likely to become disillusioned with them, relegating them to the cupboard, while people who work with the robot, tidying and preparing spaces for its presence are not only happier with its operation, but also have cleaner houses.51 A more precise consideration of the way in which regarding robots as agents may promote better teamwork with them is provided by Guy Hoffman’s research with AUR, the robotic lighting assistant.52 Hoffman’s work investigated the effect of creating a robotic lamp that could learn alongside a human. AUR could operate in two modes. In the first, the robot simply responded to the human’s movement and vocal instructions. In the second, AUR learnt the task for itself, allowing it to anticipate the human’s instructions as they completed a repetitive task together over a series of iterations. Hoffman found that when AUR anticipated commands, showing indecision through its movement if it was misdirected, people responded to the robot as an agent. In this mode, the human–robot team worked together flexibly, completing the set task more quickly and accurately.53 The results of Hoffman’s work, which brings together a robot and a human to work on a task that requires both their abilities to complete, extends Argall’s idea of the “sweet spot.”54 In addition, the implementation of this robot goes some way to fulfil Mark Coeckelbergh’s insistence that people’s perceptions of robotic technologies should involve recognizing their worth as assistants (in AUR’s case a lighting assistant), as opposed to replacements, for humans.55 It is therefore important to acknowledge that, in spite of its lamp-like appearance, people who experienced AUR’s ability to learn, anticipation of commands and attempts to correct misdirection thought 322

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of AUR as a teammate that would be let down by any errors they made.56 It is possible to argue that people’s anthropomorphic response to robots with which they interact is unavoidable, something that might be expected given the human propensity to name cars, computers and other non-robotic technologies.57 However, it is also likely that “when interpreting non-humanoid robots, peoples’ anthropomorphic and zoomorphic responses are tempered by the clarity with which they are also understood as machines.”58 This suggests that assistive non-humanoid robots have the potential to be recognized not as agents that can replace humans, but rather as a new type of non-human agent with which people can collaborate at least some of the time. The interactions between humans and assistive robots described above would seem to move beyond tool use, to encompass collaborative work that involves humans and machines that are recognized as active agents, able to sense and respond to changes in their environment intelligently. The idea of positioning robotic technologies as agents can be linked with theoretical streams such as object-oriented ontology and actor-network theory;59 however, these frameworks tend to flatten ontological distinctions between people and technologies, to regard them as equivalent in their agency and ability to experience the world. In relation to care robots and assistive technologies, it is particularly important to recognize that people generally do not understand these robots as equivalent to humans; rather, people’s experience of the agency of robots and the potential to collaborate with them, emerges through processes of communication and interaction. Not only can human caregivers be involved in these processes, but also overarching control of the use of the technologies remains with people (in some cases those receiving and in some cases those providing care).

Leaning and Lifting with Robots in the Future There is little doubt that leaning on technology as an assistive tool is perceived by most people as being very different from leaning on another person. It is already possible to argue that many people, with disabilities or non-disabled, are increasingly reliant on technology in their day-today lives. This is particularly evident with devices such as smartphones and tablets. Whether people’s reliance on such technology amounts to an undesirable level of dependence is a source of argument in scholarly research and the popular media.60 From a disability studies perspective, the moral panic around screen use as detrimental to face-to-face human communication skills and social relations is particularly unhelpful, given the importance of such technologies for people with disabilities, in some cases enabling their everyday communication.61 On a less contentious level, the mainstream acceptance of technology into people’s homes, including robots such as floor cleaners, not only makes the use of such technology less remarkable (and therefore more generally accepted), but also has the potential to make this technology more functional and affordable. These positive effects have already been seen with the mainstreaming of voice-to-text and text-to-voice technology on computers and smartphones, and a similar trend has supported the rapid development of autonomous robotic floor cleaners. Of course, in comparison with small household appliances, autonomous care robots are larger, more complicated, considerably more expensive and may operate in ways that raise fears about human safety and privacy. In general, the development of such robots is driven by concerns relating to the aging populations of many societies, including the United States, Europe and Japan, expected to increase care needs with fewer and fewer young people to work in that capacity.62 In spite of this perception of future demand, while there are many examples of assistive robots in development, relatively few have become commercially available.63 This may be why the Care-o-bot, and commercially available robots such as REEM (PAL robotics) and Pepper (Aldebaran), are marketed as having the potential to offer assistance more generally, not only in relation to care, but also in service roles in hotels, 323

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restaurants and shops.64 By broadening the possible uses for these robots the manufacturers likely hope to engage a wider market, with more sales to finance the development programs needed to tackle the difficulties associated with attaining safe autonomy, perceptual skills, dexterity and flexible human–robot communication. For the more specialized task-specific semi-autonomous robots, such as the robotic arms discussed above, commercial development and public availability is more evident. The manufacturers have demonstrated their safety and efficacy for a range of people with disabilities who communicate using a variety of channels. Unfortunately, while cheap in comparison with autonomous care robots such as the Care-o-bot and CareBot, the price of semi-autonomous assistive robots, alongside the difficulties of accessing government funds to help mitigate this cost, makes it hard for people with disabilities to procure them. However, it is possible that 3D printing technology has the potential to reduce build costs for these assistive robots in the future, as has been the case with the robotic prostheses created by Open Bionics.65 To realize the potential of care and assistive robots, it is vital that people with disabilities, both young and old, are involved from the early stages of their design and development. This will help to ensure that robotic technologies are created in ways that respect people’s choices not only about care provision itself, but also relating to the privacy of information collected to guide that care. Inclusive design and development practices will also be important in creating robots that people with disabilities can communicate with, and in some cases through, using a wide variety of interfaces. Alongside this, it will also be helpful to set aside independence as the ultimate goal for human–robot care interactions; to embrace instead the idea of relational autonomy and the interdependence that state recognizes. This is because moving beyond individualistic conceptions of independence and autonomy has the potential to alter how assistance robots are perceived, by destabilizing the assumption that people must maintain a sense of control over the robot at all times, when it might instead work better by undertaking a semi-autonomous engagement of its own with the task at hand. With a goal of interdependence in mind, it is easier for people to accept robots not just as simple tools, but rather as collaborative agents. When relations with assistance robots are framed in this way, there is potential for both the person with a disability, and the robot, to switch roles between being a lifter and being a leaner, in a relation of interdependence that aims to produce the most effective way to complete a task, given its nature, environmental factors and the ability of person and robot at any given time. Recognizing the value of human–robot collaborations, within which human and robot help each other to complete a task, makes it possible to reach a higher level of joint ability through flexible and cooperative interaction than either human or robot could achieve alone. This move acknowledges the way in which all people, not just people with disabilities, live in a state of interdependence, lifting and leaning alongside one another, animals and technologies that are likely to include increasing numbers of assistive robots in the future.

Notes 1 Graeme Innes, “I Have Never Accepted the Concept of ‘Lifters’ and ‘Leaners,’” Guardian, February 7, 2014, www.theguardian.com/commentisfree/2014/jul/02/graeme-innes-i-have-never-accepted-the-concept-of-lift ers-and-leaners. 2 Robert Menzies, “The Forgotten People,” Speech, May 22, 1942. www.liberals.net/theforgottenpeople. htm. 3 Joe Hockey, “We Are a Nation of Lifters, Not Leaners,” Australian Financial Review, May 14, 2014, www. afr.com/news/policy/tax/joe-hockey-we-are-a-nation-of-lifters-not-leaners-20140513-ituma. 4 Graeme Innes, “I Have Never Accepted the Concept of ‘Lifters’ and ‘Leaners.’” 5 For more information about Carebot (Gecko Systems) see www.geckosystems.com/markets/CareBot.php; and for more about the Care-o-bot (Fraunhofer) see www.care-o-bot-4.de.

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6 See the Mobiserv website for more information, accessed April 8, 2017, www.mobiserv.info. 7 Chris Chesher, “Mining Robotics and Media Change,” M/C Journal 16, no. 2 (2013), http://journal. media-culture.org.au/index.php/mcjournal/article/view/626. 8 Byron Reeves and Clifford Ivar Nass, The Media Equation: How People Treat Computers, Television, and New Media Like Real People and Places (Stanford, CA: CSLI Publications; New York: Cambridge University Press, 1996), 5. 9 www.mobiserv.info. 10 Amanda Sharkey and Noel Sharkey, “Granny and the Robots: Ethical Issues in Robot Care for the Elderly,” Ethics and Information Technology 14, no. 1 (March 2012): 27–40; Jaana Parviainen and Jari Pirhonen, “Vulnerable Bodies in Human-Robot Interactions: Embodiment as Ethical Issue in Robot Care for the Elderly,” Transformations 29 (2017): 104–115. 11 Sharkey and Sharkey, “Granny and the Robots.” 12 For more information about My Spoon (SECOM) see www.secom.co.jp/english/myspoon; and for the Mealtime Partner see (Assistive Innovations) http://assistive-innovations.com/en/eatingdevices/mtp. 13 For more information about the SafePath Wheelchair (being developed by Gecko Systems) see www.geck osystems.com/markets/wheelchair.php; the iARM (Exact Dynamics) see www.exactdynamics.nl/site/? page=iarm; and JACO (Kinova) see www.kinovarobotics.com/service-robotics/products/robot-arms. 14 Sharkey and Sharkey, “Granny and the Robots;” Robert Sparrow and Linda Sparrow, “In the Hands of Machines? The Future of Aged Care,” Minds and Machines 16, no. 2 (2006): 141–161. 15 Solveig Magnus Reindal, “Independence, Dependence, Interdependence: Some Reflections on the Subject and Personal Autonomy,” Disability & Society 14, no. 3 (1999): 353–367. 16 Meryl Alper, Digital Youth with Disabilities, The John D. and Catherine T. MacArthur Foundation Reports on Digital Media and Learning (Cambridge, MA: MIT Press, 2014); Donna L. Goodwin. “Self-Regulated Dependency: Ethical Reflections on Interdependence and Help in Adapted Physical Activity,” Sport, Ethics and Philosophy 2, no. 2 (2008): 172–184. 17 Susan Gabel and Susan Peters, “Presage of a Paradigm Shift? Beyond the Social Model of Disability Toward Resistance Theories of Disability,” Disability & Society 19 (2004): 587, quoted in Goodwin, “SelfRegulated Dependency,” 174. 18 Goodwin, “Self-Regulated Dependency,” 174. 19 Reindal, “Independence, Dependence, Interdependence,” 354. 20 Reindal, “Independence, Dependence, Interdependence,” 365, 364. 21 Marc Böhlen and Tero Karppi, “The Making of Robot Care,” Transformations 29 (2017): 2. 22 Mark Coeckelbergh. “E-Care as Craftsmanship: Virtuous Work, Skilled Engagement, and Information Technology in Health Care,” Medicine, Health Care and Philosophy 16, no. 4 (November 2013): 814. 23 Coeckelbergh, “E-Care as Craftsmanship.” 24 Böhlen and Karppi, “The Making of Robot Care,” 15. 25 Erika Kerruish, “Affective Touch in Social Robots,” Transformations 29 (2017): 116–135. 26 Parviainen and Pirhonen, “Vulnerable Bodies in Human-Robot Interactions,” 104. 27 Cory-Ann Smarr, Tracy L. Mitzner, Jenay M. Beer, Akanksha Prakash, Tiffany L. Chen, Charles C. Kemp and Wendy A. Rogers, “Domestic Robots for Older Adults: Attitudes, Preferences, and Potential,” International Journal of Social Robotics 6, no. 2 (April 2014): 244. 28 Parviainen and Pirhonen, “Vulnerable Bodies in Human-Robot Interactions,” 111. 29 Parviainen and Pirhonen, “Vulnerable Bodies in Human-Robot Interactions,” 111. 30 Parviainen and Pirhonen, “Vulnerable Bodies in Human-Robot Interactions,” 112. 31 Parviainen and Pirhonen, “Vulnerable Bodies in Human-Robot Interactions,” 112. 32 John Christman, “Relational Autonomy, Liberal Individualism, and the Social Construction of Selves,” Philosophical Studies 117 (2004): 143. 33 Goodwin, “Self-Regulated Dependency,” 175. 34 Carol Thomas, “Disability Theory: Key Ideas, Issues and Thinkers,” in Disability Studies Today, ed. Colin Barnes, Mike Oliver and Len Barton (Cambridge, UK: Polity, 2002), 43, quoted in Helen Meekosha, “Communicating the Social: Discourses of Disability and Difference,” Australian Journal of Communication 30, no. 3 (2003): 63. 35 Alper, Digital Youth with Disabilities. 36 Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1996), 7, quoted in Alper, Digital Youth with Disabilities, 7. 37 Reindal, “Independence, Dependence, Interdependence,” 365. 38 Goodwin, “Self-Regulated Dependency,” 178.

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Eleanor Sandry 39 Brenna D. Argall, “Turning Assistive Machines into Assistive Robots,” Quantum Sensing and Nanophotonic Devices XII (January 15, 2015), 93701Y1, ed. Manijeh Razeghi, Eric Tournié and Gail J. Brown, doi:10.1117/12.2085352. 40 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 41 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 42 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 43 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 44 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 45 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 46 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 47 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y4. 48 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y3. 49 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y5. 50 Eleanor Sandry, Robots and Communication, Palgrave Pivot (New York: Palgrave Macmillan, 2015). 51 Sandry, Robots and Communication. 52 Guy Hoffman, “Ensemble: Fluency and Embodiment for Robots Acting with Humans” (PhD, Massachusetts Institute of Technology, 2007). 53 Hoffman, “Ensemble,” and further analyzed in Sandry, Robots and Communication. 54 Argall, “Turning Assistive Machines into Assistive Robots,” 93701Y1. 55 Mark Coeckelbergh, “Artificial Agents, Good Care, and Modernity,” Theoretical Medicine and Bioethics 36, no. 4 (August 2015): 265–77. 56 Hoffman, “Ensemble.” 57 Sandry, Robots and Communication. 58 Sandry, Robots and Communication, 96. 59 Graham Harman, Tool-Being: Heidegger and the Metaphyics of Objects (Chicago: Open Court, 2002); Bruno Latour, Reassembling the Social: An Introduction to Actor-Network-Theory (Oxford: Oxford University Press, 2005), http://dss-edit.com/plu/Latour_Reassembling.pdf. 60 Sherry Turkle, Reclaiming Conversation: The Power of Talk in a Digital Age (New York: Penguin Press, 2015), concentrates on the negative impacts of screen use in the main, whereas Jenny Davis provides a more positive take, see “Our Devices Are Not Turning Us into Unfeeling Robots,” The Kernel, November 15, 2015, http://kernel mag.dailydot.com/issue-sections/staff-editorials/14961/sherry-turkle-reclaiming-conversation-technologyempathy. 61 Sara Luterman critiques Turkle’s arguments in relation to autism, “Screen Backlash Is a Disability Issue,” NOS Magazine, October 2, 2015, http://nosmag.org/screen-backlash-is-a-disability-issue. 62 Sharkey and Sharkey, “Granny and the Robots”; Smarr et al., “Domestic Robots for Older Adults.” 63 Sandra Bedaf, Gert Jan Gelderblom and Luc de Witte, “Overview and Categorization of Robots Supporting Independent Living of Elderly People: What Activities Do They Support and How Far Have They Developed,” Assistive Technology 27, no. 2 (2015): 88–100; Hideyuki Tanaka, Masahiro Yoshikawa, Eimei Oyama, Yujin Wakita and Yoshio Matsumoto, “Development of Assistive Robots Using International Classification of Functioning, Disability, and Health: Concept, Applications, and Issues,” Journal of Robotics 2013 (2013): 1–12. 64 For more information about REEM (PAL robotics) see http://pal-robotics.com/en/products/reem; and about Pepper (Aldebaran) see www.aldebaran.com/en/cool-robots/pepper/find-out-more-about-pepper. 65 For more information on Open Bionics see www.openbionics.com.

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PART IV

Innovations, Challenges and Future Terrains of Transformation

30 DROPPING THE DISABILITY BEAT Why Specialized Reporting Doesn’t Solve Disability (Mis)representation Chelsea Temple Jones

I’m sitting in a downtown Toronto coffee shop and the journalism student across the table hits “record” on her phone’s voice-recorder app. I chip away at my nail polish, and then remind myself not to do that. Journalism students are trained to pay attention for details like anxious ticks, and this one is smartly scribbling down observations before I even speak. “So, did you ever think of adopting a disability beat?” she asks, pen at the ready. She knows I am a journalist, and that most of my stories have strong leanings toward community-based disability politics. “It’s not as simple as that,” I try to explain. “You can’t just snap your fingers and assign yourself a disability beat. It doesn’t work that way.” We’re here to talk about intersections between journalism and disability advocacy, specifically as they pertain to a class I teach at Ryerson University called Writing for Disability Activism. As the instructor I am constantly thinking through a pedagogical puzzle built from both pieces of journalistic practice and critical disability theory. I’m interested in how disability is represented— and, in some opinions, misrepresented—in contemporary Canadian journalism. There is a wellestablished gap between journalists and disabled people,1 and the literature suggests that disability advocates feel under- and misrepresented in journalism.2 Meanwhile, journalists attempting to cover disability-related stories feel cut off from sources who might speak in the stories with the added punch of disability activism. As a (currently) non-disabled journalist, ally and disability studies researcher I’ve always felt too easily connected to medical “experts” but disconnected from folks who could give a non-mainstream read of disability experiences and current events such as disabled people, disability activists and academics.3 In the past, before social media webbed together conversations between those of us with the literacy and technical skills to participate in them, misrepresentation of people with disabilities in mainstream North American news media was met with relatively few solutions. Some researchers suggested journalism students should receive more diversity education, which would include disability as a topic.4 Others called on disabled journalists to carry the fight toward accurate disability representation in the newsroom on the premise that without such workplace activism, low levels of employment of disabled people in newsrooms would affect journalists’ attitudes toward disabled folks and translate into skewed representation.5 And others have suggested another remedy still: a disability beat.6 Calling for a disability beat means calling for news agencies to assign one reporter to build connections with disability communities and specialize in disability-related 329

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coverage. The problem is that in a cultural landscape where both journalism and disability are evolving concepts in scope and meaning, disability beats are not a catchall solution for changes facing both fields. “You can’t just decide to pick up a disability beat and expect a publication to think it’s a great idea,” I say, hesitating. I think of my colleague Helen Henderson, the first person to hold a long-term disability beat for a major Canadian newspaper. The original proposal for this book chapter was written when Henderson was alive, and called for a reflective back-and-forth about the labor of upholding a disability beat for the Toronto Star, Canada’s most widely read newspaper. Henderson, who had multiple sclerosis, didn’t just cover the disability beat because she wanted to; being employed by a major newspaper for decades and patiently waiting put Henderson en route to such specialized reporting. A few years before Henderson died in 2015, she and I had a similar conversation in her warm apartment tucked into the grey Toronto skyline. We agreed that developing a beat entails the privilege of an entry point into the politics of journalism. “You might develop an expertise in a certain area, or you might know that disability can almost always be included in a story because disability is part of every facet of life,” I try to explain, “but writing about disability full time, or writing a disability beat, calls for more than that.” My decade-long experience writing disability-related feature stories at a rate of a handful per year pales in comparison with Henderson’s 17 years of weekly disability-based writing. Though her work is often overlooked in scholarship on the topic, Henderson answered critics’ calls to bridge the gap between journalism and disability, writing columns that taught readers what disability-based journalism can look like.7 And as I try, now, to speak to the communication gap between journalism and disability, I am left in a ghostly conversation with Henderson’s broad and optimistic “sitpoint.”8 At my disposal are email snippets, transcribed interviews, notes from personal conversations, memories and scribblings from her various exchanges with students whenever she rolled into a classroom as a guest speaker. This method of collecting scraps and echoing memories is both journalistic work and archival work, but runs into the risks and politics of disability misrepresentation.9 My own relationship with the prospect of a disability beat is a tired one. Experience suggests to me that the fantasy of the disability beat works as follows: Someone, or maybe a group, decides they deserve more or better media attention because they read “the media”—broadly speaking—as negatively representing their issues. (The first problem with this reading is the assumption that it is a journalist’s role to tell stories accurately within a complex media framework but also in alignment with the group’s preferences.) The group might then follow the literature’s guidance and pitch aggressively to journalists, and sometimes their pitches are heard if folks agree to talk on record. When the group finally connects with a journalist who seems interested in their cause, they latch on to her and eventually suggest she adopt a disability beat. In my case, this recollection ends with the journalist balking at the suggestion and wondering how to gently explain a disability beat that may not effectively create accurate and ongoing reportage.

Working Through Newsroom Norms Early in her career as a Toronto Star journalist, Henderson was assigned a Valentine’s Day feature story about two disabled people in love. The editor spat out a question with an angle that rang of the derogatory “overcoming” narrative:10 “How could two people so tragic find love?” Henderson sensed the communication gap between journalists and disability advocates early on the job. In 1971, fresh out of university and carrying a master’s degree in English Literature, the young reporter was the first woman hired as a business journalist for the Star when she was 330

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asked to cover the “Resources” beat, which meant tromping around the Arctic writing about oil and mining. A few years later she was diagnosed with multiple sclerosis. The idea for a disability beat began brewing as her job shifted into the “Life” section, and she became increasingly aware of the ways in which her unfolding disability was surfacing in the newsroom. Henderson wrote a proposal for a disability beat, knowing that this beat could add valuable knowledge to our local understanding of disability. It was rejected. Instead, she was told to write a weekly, unpaid disability column in her spare time. So she wrote, knowing that she had to earn a beat rather than demand it. Traditional beat journalism grew from the demand of 24-hour news cycles. These cycles echo modernist demands for progress and circulate a constant flow of stories on a regular basis in an era where journalists hit the ground, knocking on doors and making cold calls in order to insert themselves into their communities.11 Imagine the journalist’s job: The day opens with a story meeting somewhere amid a newsroom webbed with desks. At the center of the web is the senior editor. He—and later she—assigns a story or agrees to an idea and the journalist is out the door.12 When the reporter returns, the story leaves their hands and travels through various newsroom channels, hitting the copy-editor’s desk and being slapped with a headline before reaching a newspaper page. These fixed norms and practices in North American print newsrooms have been documented often in past journalism research.13 David Ryfe reminds us of the “virtuous” economics of journalism that propelled such scenes: Reporters wrote stories that attracted large audiences. Their news organizations translated these audiences (through advertising dollars) into revenue … More revenue allowed organizations to hire more reporters, who produced more stories that attracted larger audiences, and so on … Journalism succeeded so well because it meshed neatly with key strands of modern society, with everything from the temporal rhythm of the eight-hour workday to urbanization, to the increasingly bureaucratized, professionalized, and consumerist world that came into being.14 It was here—somewhere between morning coffee and story meetings—that news values percolated and became newsroom norms. News values are the “innumerable shared values and beliefs” editors sense audiences want to experience; things audiences “get” and want to learn about (at times without much explanation).15 Researcher Murray Dick points out that journalists have traditionally relied on “official” bureaucratic organizations to “pad the boundaries” of their beats: city council (the municipal politics beat), police (the crime beat), hospitals (health beats) and churches (religion beats).16 The routines of these organizations, including events tied to them and “expert” spokespeople they put forward, help journalists draw up routines and agendas to fit the daily news cycle and the news values it espouses.17 (Arguably, the routinized nature of beat reporting also led to journalists’ over-reliance on particular “expert” sources available, such as public relations professionals or other tightly managed spokespeople.) Progressing somewhere in this scene was Henderson, floating through the crowded sidewalks of downtown Toronto looking for love-stuck disabled folks and knowing full well that disability should not be written up as tragedy or what would later be dubbed “inspiration porn.”18 Still, she did not want to miss out on an opportunity to strengthen her case for a disability beat she’d been pitching for years now—no matter how cringeworthy the task. In 2010 I interviewed five journalists with various connections to disability.19 Henderson was among them. As part of my master’s research in critical disability studies, I wanted an updated understanding of how disability is understood in mainstream news production. Until then, and until now for that matter, the most accurate and comprehensive published Canadian account of 331

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journalists’ perceptions of disability was a 1988 government-authored investigation.20 When I asked this handful of journalists whether journalism reflects public opinion or shapes it (a question that nods to a circular debate in the field of media studies), every participant answered, “both.” Then, in separate interviews, each overrode any suggestion that disabled journalists understand the world differently than non-disabled journalists. And, because journalism is not necessarily advocacy work, they pointed out that no individual can fully understand the broad category that is “disability” and therefore anyone should be able to take up the topic—as a beat or as a one-off story. In reflecting on their experiences working in a 2010 media landscape, most participants took the stance that journalists with disabilities must uphold the task of representing disability in the newsroom, despite the risks of tokenization. “I have the slow kind of MS,” Henderson told me in that interview, “so I started out walking and then I had a cane and a brace on my leg. And then eventually I did have an electric scooter. So my evolution as a disabled person and as a journalist … was slow,” 21 with the Star following her lead in learning about accessibility and accommodation. Although Henderson was not the only reporter with a disability in the Star’s newsroom, her push for a disability beat left her playing a dual role: She was a disabled reporter who covered disability. Her specialization worked to her advantage when she was assigned particularly prestigious stories, such as an opportunity to interview the then-lieutenant governor of Ontario and disability advocate, David Onley.22 Henderson believed she “earned” that assignment after years of developing a disability-based portfolio. What’s more, even for disabled journalists who didn’t want be disability advocates, doing so sometimes seemed like the only way to get disability issues into print. One interviewee, a Toronto-based editor who wished to be unnamed, pointed out that journalists don’t make things happen; they report on things that happen—therefore advocating for disability in the newsroom came with implications of conflicts of interest or bias. “I’m not so much interested in changing perceptions,” he said. “Because that’s not my job … as a journalist my job is this: inform people, engage them, add to their knowledge, and always, always, always, above everything, give a new perspective.”23 Henderson, however, might have taken a different view could she reflect on her job today. Even though journalism is not necessarily advocacy work, disability beat journalism played an important role in adding a layer of disability knowledge to public consciousness in Canada, specifically through her work. After all, Henderson took her time with stories like that Valentine’s Day story in the early days of her disability beat; she began nosing around and learned that the two “tragic” characters at the heart of her editor’s assignment hated one another before Cupid struck. So, recognizing the broad nature of news values and refusing to typecast disabled people as tragic, Henderson rounded up four more couples and re-shaped the angle to write an alternative audience-pleaser about unlikely lovers.24 Her stories, often investigative in nature and sometimes written as feature stories, eventually evolved into a weekly opinion-based column.

#Redirecting: New Disability Journalism Though beats have been important to journalism and disability representation in the past, contemporary storytelling has rendered them largely obsolete. Seven years after my interviews, the call for a disability beat is a call to fit into a mode of journalism that may reflect past news values and expectations. The motion of advocating for a mainstream disability beat overlooks “alternative” or “dissident” media that takes up disability differently using perspectives that interrogate the politics of its own representation.25

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In her book, Representing Disability in an Ableist World: Essays on Mass Media, Beth Haller describes a content analysis that samples “alternative” disability media—magazines, newspapers and newsletters—produced in the United States in the 1990s following an increased availability of personal computers and small-scale desktop publishing. Haller mentions Ragged Edge, The Arc and the Dove and A&U among others.26 A few parallel degrees north, Canadians could add to this roster magazines such as Abilities27 and Phoenix Rising,28 to say nothing of the late 1990s radio show cum television program Moving On,29 which brought an independent living focus to the Canadian Broadcasting Corporation (CBC), the country’s national broadcaster. Haller points out that the utility of these kinds of productions was their communication to audiences about local, accessible community events. This information breaks from traditional journalistic news values of objectivity and non-bias and instead speaks to a sensibility specific to “dissident” media, wherein content was designed not only to reflect community but also to support it. More recently, media produced by and for disabled folks has tapped Canadian public consciousness. The Deliciously Disabled podcast had a swelling audience until it was dismantled in 2016,30 and community activists like those behind Toronto’s annual Disability Pride March have a strong presence on social media, with #CanadiansWithDisabilitiesAct being one advocacy tool of choice for some disability rights advocates. Canadians are now launching their stories through social media, rather than waiting for (beat) journalists to find them. For instance, in July 2016 disability advocates Tim Rose and Natalie Rose lit up Facebook and Twitter with their descriptions of discrimination tagged with #wheelchairsarentluggage after Tim’s standard-size wheelchair was checked as an oversized bag on an Air Canada flight.31 Evidently the hashtag caught the attention of former journalist and now disability advocate Ing Wong-Ward, who responded with a message that was shared 25 times at the time of writing: “What @TimDRose experienced is part of a larger, deeper, systemic issue for travelers w/#disabilities. #wheelchairsarentluggage.”32 Rose’s story was picked up by the Globe and Mail33 and other major Canadian news outlets shortly afterward. On August 11, 2016, Rose was interviewed on a CBC Toronto morning show, which had picked up on that and another hashtag tied to Rose’s story: #AODAfail (in reference to the Accessibility for Ontarians with Disabilities Act).34 Importantly, stories that disability advocates create are not held tightly within national borders. Over the course of drafting this article, I was pointed toward Disability Twitter, a wide online community of disability advocates.35 When disability communities make media they push forward a reminder that disabled people make up a “multi-community community” so diverse it is perhaps impossible to capture its essence in a single news beat.36 Indeed, social media has done what a disability beat never could: People can tell their stories on their own terms, opening themselves up both to the possibilities and vulnerabilities of first- and second-hand representation as they cast their stories toward broad audiences.

Shape-Shifting Through Writing Though social media allows advocates to redirect the script, both journalism and disability are at work in a Canadian cultural context, where physician-assisted suicide, euthanasia, reproductive interventions and other difficult conversation are often the news of the day. And here I am, faceto-face with a soon-to-be reporter, scraping away at my nail polish and wondering what she is thinking, and what she’ll want to discuss next, as she nods along. I could ask, but I don’t. I recall my own experience as a cub reporter: I’d chew on one story possibility for a few minutes before another would emerge; the myth that journalists go into their stories with an angle is an inflated one—I was taught that you never really know your story until you exhaust your sources. Social media is increasingly influential, but getting a phone call from a journalist interested in your experience isn’t an obsolete occurrence. Therefore disability advocates are still tasked with 333

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the responsibility of communicating with news creators, those people who do their jobs well when they uphold values of fairness and accuracy as they grant access to stories we might otherwise miss. Journalists are daily tasked with having to rely on others to develop a level of knowledge on any given topic—disability included—and advocates play a role in informing journalists. Yet, some disability advocates still nervously avoid talking to journalists or making their perspectives public.37 Knowing how to communicate with journalists is essential for those who wish to engage in formal media channels, which is why I work with Toronto-based writer David Hayes to teach my students how to pitch. News pitches are brief oral or written outlines of a story. “A journalist may describe the story basics in a minute or two, or write up a few lines to several hundred words to the editor or producer,” freelance writer Rob Wipond explains in the book Mad Matters.38 Under my watch, students write well-researched, page-long proposals that, at minimum, outline a clear and reasonable focus with identifiable (on-the-record) characters. In 2013 Henderson spoke to the class about pitching, reiterating a point she made in my interview with her three years earlier: Anonymity is rarely an option as it puts a journalist’s credibility at stake. Even with her vested interest in making disability causes public, Henderson explained that a request for anonymity would usually just result in a search for someone else or a throw-away story that couldn’t be published: Sometimes people are afraid to go on the record to say that they will allow their name to be associated with, and to be quoted. They’re afraid of the exposé. Or afraid of retaliation … For the most part my policy is either you go on record or I can’t do the story. In very rare occasions would I ever hide somebody’s identity.39 And in some ways, this is the first and foremost lesson of pitching: If you want to tell a story, you must be willing to use your voice and tell it. As scholars in the emerging field of mad studies have pointed out, the risks of personal storytelling are many in neoliberal contexts, where personal stories can be co-opted under ableist/mental health agendas that still rely on old notions of disability as a problem in search of a solution.40 Yet, if we choose to push our stories forward and counter-frame stereotypical disability myths we have lived with for too long—overcoming, kill or cure, disability as object of pity/charity, disability drift, disability hierarchy and others that have been well documented by disability studies scholars41—we have to do so in a way that is understandable in journalism. And, just as there is risk in telling stories, there is risk in keeping silent. Canadian journalists with an interest in disability know rejecting media requests can cause problems. One particularly unsettling example arises in journalists’ reflections on the 1993 onward coverage of the killing of Tracy Latimer, a 12-year-old with cerebral palsy. Her father, Robert, admitted to poisoning Tracy with carbon monoxide on October 24, 1993 in rural Saskatchewan.42 The court case unfolded at a distance from the Toronto journalists I interviewed, who, in their writing, struggled to understand the seemingly shifting moral compass of their audiences who, around the same time, were also grappling with unsettling calls for physician-assisted suicide out of British Columbia by Sue Rodriguez43 and her supporters. Ing Wong-Ward, who was working as a radio producer at CBC at the time, spoke about her experience watching the Latimer case unfold and attempting to find an angle that would humanize Tracy—if only someone could (or would) speak to Tracy’s experience: We will never know the whole story of what happened in [the Latimer] family, aside from what is on record as fact … And we’ll never know Tracy’s side of the story and that, to me, is disturbing … Now whose responsibility is that? When somebody’s dead, is it the [responsibility of] disability organizations? Well, if they’re going to do that, 334

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how do they frame their conversations with the larger public? And these are questions not for me to answer because I am a journalist, even though I am a disabled person. Those are for them to answer, and for them to figure out.44 In an era where euthanasia and “mercy killing” were already making headlines, journalists and audiences were left trying to piece together and frame an accurate account of Tracy Latimer’s death. Framing is a way of building a story and can be loosely described by the view that news stories must be told in a way that is relatable and understandable to a broad audience.45 But as Ruth Enns wrote in her book responding to Tracy’s murder, “By the time many had recovered from their shock enough to organize a forceful protest, the story had already been framed in a way that connected [Robert] Latimer with euthanasia, and euthanasia with disability.”46 As activist writers, we frame our stories cautiously, wary of stereotypical framing John Clogston47 and Beth Haller48 have noticed in media coverage: supercrip models that emphasize overcoming, social pathology models that rely on medicine as authority on disability topics and the consumer model that considered disabled people a marketable consumer base, among others. These models cater to news producers who curate media material for the public and whose minds, in Wipond’s words, “are filled with shared beliefs … most of them are misinformed, deeply prejudicial beliefs.”49 Journalists, however, may resist such beliefs. Clogston’s 1990s research on journalistic attitudes, which, although dated, suggests journalists’ attitudes toward disability are more progressive than their final news stories. Their stories are transformed by institutional barriers, such as editorial control and style guides.50 Yet, as Haller explains, journalists experience triangular pulls that influence framing as they are caught between reporting, working in the interests of disabled people and working for the corporations that employ them.51 Two decades later, the journalists I interviewed placed responsibility on both themselves and advocacy groups in their call for better disability-related news coverage. For some, the communication gap between journalists and disability advocates is exemplified by journalists’ attempts to work with disability allies rather than for them. Some of my 2010 interviewees argued that disabled people need to agitate for the stories they want covered, saying it is the disability community’s responsibility to unearth these stories for the public. “You can’t complain about the media not caring about your issues if you’re not going to meet them halfway,” explained Wong-Ward.52 Wong-Ward now works for the Center for Independent Living Toronto and is part of the social media-circulated media video collection called “Project Value,” which on Facebook describes itself as “a collection of disabled Canadians sharing why disabled lives have value.”53 Her #ProjectValue work demonstrates the shape-shifting of journalists and advocates as our possibilities for story production widen, and other people have posted videos of their own. The video stories reframe in humanizing ways disability as desirable and valuable, offering counter-narratives to stories that frame disability as tragic and fatalistic as right-to-die legislation is challenged in Canada. And here, in a non-stagnant media landscape, it is perhaps possible to imagine a media context where the battle for disability-related stories is tamed and where authorship remains in the hands of disabled people who are in conversation in the “hyper-democratic” sphere of online content creation.54 Yet, what this leaves us with are two visions of what journalism and disability can do without a disability beat: The first is that anyone can work with disabled people and tell stories. The other is that disabled people can tell their own stories. Both of these outcomes can complement one another, blending insider and outsider positionings as good journalism ought to do, and making room for increasingly sophisticated stories. For me, the outcome of this blending is that I no longer feel much desire to plant my byline on disabilityrelated stories written on behalf of under- or mis-represented groups. Though, at times, this task is unavoidable. For example, I once spent several weeks suggesting to an editor that yes, it is possible 335

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to interview a person who does not speak verbally and still count her as a reliable and viable source. And years of practice convincing editors that people carrying intellectual disability labels are reliable sources on their own prepared me for similar conversations with my university’s Research Ethics Board when I undertook my 2015 doctoral research. There are still people who are not in positions to reclaim their stories because they are not believed to have lives worth narrating, but perhaps these are the people upon whom storytellers should be focused. After all, disability advocates have long been reminding the news media, “nothing about us without us.” For me, this writing is tangled in the complexities of allyship, and the work of teaching future news creators about disability. When I am tasked with stories about disabled people I am keenly aware of my own positioning and capable of making and defending a decision to decline such stories in favor of people who will more accurately represent themselves. I can also teach students, many of whom can claim ownership over such stories, strategies for tapping into an increasingly accepting media landscape and claim their own stakes. My role as a journalist, an ally and educator is never settled.

Blurring the Beat: Emergent Disability Journalism For Henderson, it took two years of asking, and being told “maybe later,” before her editors recast her disability column-writing work into a full-time, paid beat for the Star in the 1980s. One of her first features, published in 1991, told the story of a blind woman who “dropped off the edge of the world and fell to her death on the tracks of Lawrence West subway station,” and the disability activists who sprung to action advocating for safer, more accessible transit in Toronto.55 Among other interventions, this advocacy work led to stop announcements, request-stop buttons and uniform-length subway trains we encounter on Toronto’s subway system today. Then she expanded the column’s scope, adding illness, madness and aging to the mix. She made it her job to make sure disability stories didn’t disappear. I once asked Henderson how she thought her stories influenced the public, and she said the answer was difficult to gauge. “Sometimes you feel as though [the stories you write] just go out into the ether and nothing happens,” she said. “I hope that it’s a chipping away process.”56 Perhaps Henderson’s “chipping” was the building up of something more nuanced than a disability beat—a new form of disability journalism with advocacy at its core. Though echoes of the beat still exist, it is no longer the driving force of disability-related media. Increasingly online news sites seem to have room for disability-related sections—virtual beats. The Huffington Post’s “Disability” section brought in stories from its other sections (home, sports, business, etc.) as early as 2010.57 Major broadcasters like the BBC put out disabilityrelated podcasts, such as Ouch! and its accompanying blog.58 And while smaller broadcasters host the Disability Matters Radio Show,59 Disability Radio World Wide,60 blogs such as The Body Is Not an Apology61 have put out job calls for writers with vested interest and life experience with disability. Plus, writing about disability knowledgably is easier than ever before. With style guides available from the National Center on Journalism and Disability,62 older guides that contain little information on how to cover disability in ways that might be in-line with disability community values are collecting dust. As Haller, who archives a long list of such disability-based content on her blog Media dis&dat, explains, “the disability beat that never really took off in traditional print journalism has morphed into having a place in a variety of ways on the Internet.”63 When we think of news production, our images of a room full of buzzing desks stocked with a hierarchy of reporters and editors becomes increasingly inaccurate. Online news rules, and new values and practices are being forged in realms of digital journalism. Ryfe argues that “the pushing and pulling” between professionalism, the economy and the state—the stuff propelling traditional news cycle—is much weaker than ever before and this weakness compromises the 336

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cohesiveness of the field as its boundaries become increasingly blurred.64 This blurring can be a relief for writers penning disability-related stories, whether stories about themselves or others: Whereas once disability advocates needed journalism to carry their stories forward, we are entering a different era of knowledge and information production where journalism appears to be losing its boundaries and thus making room for ad hoc writing. The tension here lies somewhere between the suggestion that disability beats have run their course, and the acknowledgment that particular disability beats, such as Henderson’s, have served both disability communities and the nature of mainstream media production.

Disappearances and Backstories: Making Something Our Own The student-journalist sent me an email the day after our meeting. “To be honest,” she wrote, “[the story] probably won’t run; my editor was just scrambling for something last night.”65 That’s how it goes sometimes: stories disappear. The communication gap between journalists and disability advocates remains open—neither journalists nor advocacy organizations are obligated to perform in constructive ways that complement each other’s ambitions. With the combination of journalistic limitations and advocacy hesitation at work, it almost seems fitting that disability-based stories tend to be easily dropped. Right now journalistic news values do not operate on crip time,66 nor is crip politics willing to succumb to the demand of a modernist news cycle or a journalistic ethic that suggests things about disability can be written—and written well—without disabled people penning the content. So disability stories, and the question of making a disability beat, gets dropped. However, the stories that don’t disappear can be trophies. Henderson has explained that journalists must “carry the fight” for reasonable disability representation into each newsroom. I often wonder what she would have said if she’d been writing with me now. I would suggest to her that public storytelling has a new, active setting: online, weaving in and out of newsrooms and very often in the hands of disabled people and advocates who engage in grassroots journalism.67 I don’t know if Henderson would agree. I do know Henderson valued a good backstory. And there’s space here for me to try, as I might, to share one: In December 2007, Henderson had the first line of her story (the lead) changed by an editor. He said he thought he was making things better. “It was about someone who was deaf and blind at Christmas,” she recalled.68 The editor inserted a sentence about how disabled people can finally “enjoy” Christmas. “It was just appalling. It was unbelievable. I think of that as being my own challenge, my own fault. And I kicked up a real stink about that, but the way to handle it is to not let it happen.”69 And here, in this changing journalistic terrain, Henderson’s advice to shepherd and protect stories is still relevant as the activist work of telling stories and continuing to care for them as they publicly circulate is work that calls for great care. Henderson continued writing her disability beat after retiring in 2008, freelancing from home and losing some control over her writing. Though she was effectively answering critics’ calls for a disability beat, she was rarely acknowledged. She never knew from one week to the next when her column would be cancelled. However, with the newsroom at a distance, the disability community shifted closer. People began counting on her to take up issues (like the provincial legislation now in motion to make Ontario accessible called the Accessibility for Ontarians with Disabilities Act—“it has no teeth,” she told a class of disability studies students in 2013). She waited. She wrote. The last of her columns appeared online in 2012. In 2014 Henderson spoke to another group of students. One asked where she found her ideas. “I come up with very few ideas,” she responded softly and slowly, in her patient way. “It’s the community that does all the work and I react to them. A lot of my job is persuading the gatekeepers.”70 This persuasive type of advocacy, she said, means having patience. It means 337

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accepting that you will not always satisfy your audience, whether they are editors or advocates—“it cuts both ways,” she cautioned. It means understanding the limitations and possibilities of storytelling and, as Henderson taught us, patiently making something our own.

Notes 1 Patrick Boyer, House of Commons, Standing Committee on Status of Disabled Persons, No News Is Bad News: First Report of the Standing Committee on the Status of Disabled Persons (Ottawa, ON: Queen’s Printer for Canada, 1988). 2 Chelsea Temple Jones, “‘Why This Story Over a Hundred Others of the Day?’ Five Journalists’ Backstories About Writing Disability in Toronto,” Disability & Society 29, no. 8 (2014): 1206–1220. 3 Beth Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, IN: Advocado Press, 2010). 4 Shawn Burns, “Diversity and Journalism Pedagogy,” Journalism & Mass Communication Educator 71, no. 2 (2015): 220–230. 5 Canadian Radio-Television and Telecommunication Commission (CRTC), Broadcasting Public Notice CRTC 2006–77: Commission’s Response to the Canadian Association of Broadcasters’ Final Report on the Presence, Portrayal and Participation of Persons with Disabilities in Television Programming (Ottawa: CRTC, 2006), www. crtc.gc.ca/eng/archive/2006/pb2006-77.htm. 6 Joseph Shapiro, “Disability Policy and the Media: A Stealth Civil Rights Movement Bypasses the Press and Defies Conventional Wisdom,” Policy Studies Journal 22, no. 1 (1994): 123. 7 Many of Henderson’s columns are archived on the Star’s website: www.thestar.com/authors.henderson_helen. html. 8 Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” NWSA Journal 14, no. 3 (2002): 21. 9 Richard Harvey Brown and Beth Davis-Brown, “The Making of Memory: The Politics of Archives, Libraries and Museums in the Construction of National Consciousness,” History of the Human Sciences 11, no. 4 (1998): 17–32. 10 Simi Linton, Claiming Disability: Knowledge and Identity (New York: University Press, 2012), 19. 11 Murray Dick, “The Re-Birth of the ‘Beat’: A hyperlocal Online Newsgathering Model,” Journalism Practice 6, no. 5–6 (2012): 754–765. 12 Chelsea Temple Jones, “Pitching the Backstory: Five Accounts of Journalism and Disability from Toronto, Canada” (Major Research Paper, York University Critical Disability Studies Program, 2010). 13 See Gaye Tuchman, Making News (New York: Free Press, 1978); David Manning White, “The ‘Gate Keeper’: A Case Study in the Selection of News,” Journalism Quarterly 27 (383–390); Bernard Roshco, Newsmaking (Chicago: University of Chicago Press, 1975); John Hartley, Understanding News (New York: Pantheon, 1988); Herbert Gans, Deciding What’s News: A Study of CBS Evening News, NBC Nightly News, Newsweek and Time (New York: Vintage, 1980). 14 David Ryfe, Can Journalism Survive? An Inside Look at American Newsrooms (Cambridge, UK: Polity Press, 2012), 138. 15 Rob Wipond, “Pitching Mad: News Media and the Psychiatric Survivor Perspective,” in Mad Matters: A Critical Reader in Canadian Mad Studies, ed. Brenda A. LeFrançois, Robert Menzies and Geoffrey Reaume (Toronto: Canadian Scholars’ Press, 2013), 256. 16 Dick, “The Re-Birth of the ‘Beat.’” 17 Jackie Harrison, News (London: Routledge, 2006), 141, quoted in Dick, “The Re-Birth of the ‘Beat,’” 755. 18 Stella Young, “Stella Young: I’m Not Your Inspiration, Thank You Very Much,” YouTube video, June 9, 2014, www.youtube.com/watch?v=8K9Gg164Bsw. 19 Jones, “Pitching the Backstory.” 20 Boyer, No News Is Bad News. 21 Helen Henderson, interview transcript, unpublished, 2010. 22 Helen Henderson, “Breaking Down Barriers to People with Disabilities; It’s a Commitment of New Lieutenant-Governor, David Onley,” Spectator, September 4, 2007. 23 Jones, “Why This Story,” 1207. 24 Helen Henderson, “Lighting up Christmas,” Toronto Star, December 22, 2007, www.thestar.com/life/ 2007/12/22/lighting_up_christmas.html. 25 Haller, Representing Disability in an Ableist World, 115.

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26 See Ragged Edge Online for archival and current articles, accessed January 27, 2017, www.raggededgemaga zine.com; See Beth Haller’s chapter, “Disability Media Tell Their Own Stories,” in Haller, Representing Disability in an Ableist World, 115–136. 27 Canadian Abilities Foundation, “Abilities: Inspiration, Information and Opportunity for Canadians with Disabilities,” accessed January 27, 2017, http://abilities.ca/about-us/. 28 See the Psychiatric Survivor Archives of Toronto to access Phoenix Rising, accessed January 27, 2017, www.psychiatricsurvivorarchives.com/phoenix.html. 29 “Moving On,” CBC Program Guide, accessed January 27, 2017, www.cbc.ca/programguide/program/ moving_on. 30 Originally launched in February 2015 as a weekly podcast called Disability After Dark, the podcast is digitally available under the name Deliciously Disabled. See Deliciously Disabled, Facebook, accessed May 15, 2017, www.facebook.com/deliciouslydisabled/posts/616821025142346; Andrew Scrivner, “2017 Kick-Ass Activist: Andrew Gurza,” This, January 17, 2017, https://this.org/2017/01/17/2017-kick-ass-activist-andrewgurza/. 31 Prescilla Hwang, “Man Grounded by Air Canada Says Option to Take Apart Wheelchair Is to ‘Take Apart Your Legs,’” CBC News, August 11, 2016, www.cbc.ca/news/canada/toronto/programs/metromorning/ disability-rights-social-1.3716795. 32 Ing Wong-Ward, Twitter post, August 2, 2016, 6:56 am, https://twitter.com/ingwongward/status/ 760474318543421440 33 Nicole Thompson, “Toronto Man Says Air Canada Barred Him From Flight Due to Wheelchair Size,” Globe and Mail, August 2, 2016, www.theglobeandmail.com/news/toronto/toronto-man-says-air-canadabarred-him-from-flight-due-to-wheelchair-size/article31223797. 34 Jill Dempsey, “Grounded by Air Canada,” audio, CBC News, Toronto, August 11, 2016, www.cbc.ca/ news/canada/toronto/programs/metromorning/grounded-by-air-canada-1.3716409. 35 Liz Jackson, “The World’s Largest Minority Is Speaking Out. This Is What They Have to Say,” Upworthy, February 11, 2016, www.upworthy.com/the-worlds-largest-minority-is-speaking-out-this-is-what-theyhave-to-say. 36 Haller, Representing Disability in an Ableist World, 118. 37 Boyer, No News Is Bad News. 38 Wipond, “Pitching Mad,” 255. 39 Jones, “Pitching the Backstory,” 61. 40 Lucy Costa, Jijian Voronka, Danielle Landry, Jenna Reid, Becky McFarlane, David Reville and Kathryn Church, “Recovering Our Stories: A Small Act of Resistance,” Studies in Social Justice 6, no. 1 (2012): 85–101. 41 Jay Dolmage, “Interchapter: An Archive and Anatomy of Disability Myths,” in Disability Rhetoric (New York: Syracuse University Press, 2014), 31. 42 “‘Compassionate Homicide’: The Law and Robert Latimer,” CBC News, December 6, 2010, www.cbc. ca/news/canada/compassionate-homicide-the-law-and-robert-latimer-1.972561. 43 The Canadian Encyclopedia, “Assisted Suicide in Canada: The Rodriguez Case (1993),” www.thecanadia nencyclopedia.ca/en/article/rodriguez-case-1993/. 44 Jones, “Pitching the Backstory,” 59. 45 Robert Entman, “Framing: Toward Clarification of a Fractured Paradigm,” Journal of Communication 43, no. 4 (1993): 51–58; Dennis Davis and Kurt Kent, “Framing Theory and Research: Exploring the Implications for the Practice of Journalism” (paper submitted for presentation to the Journalism Studies Interest Group, Conference of the International Communication Association, Dresden, Germany, 2006). 46 Ruth Enns, A Voice Unheard: The Latimer Case and People with Disabilities (Halifax, UK: Fernwood, 1999), 48. 47 John Clogston, Reporters’ Attitudes Toward and Newspaper Coverage of Persons with Disabilities, unpublished doctoral dissertation (East Lansing: Michigan State University, 1991). 48 Beth Haller, “If They Limp, They Lead? News Representations and the Hierarchy of Disability Images,” in Handbook of Communication and People with Disabilities: Research and Application, ed. Dawn O. Braithwaite and Teresa L. Thompson (Mahwah, NJ: Lawrence Erlbaum Associates, 2000), 273–287. 49 Wipond, “Pitching Mad,” 256. 50 Clogston, Reporters’ Attitudes Toward and Newspaper Coverage of Persons with Disabilities. 51 Haller, “If They Limp,” 273. 52 Jones, “Pitching the Backstory,” 56. 53 Project Value’s Facebook page, accessed January 26, 2017, www.facebook.com/projectmyvalue. 54 Jes Sachse, presentation to Writing for Disability Activism Course, Ryerson University, Toronto, October 5, 2015.

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55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70

Helen Henderson, “Blind on the Subway,” Toronto Star, February 8, 1991, ProQuest Central (436354179). Jones, “Pitching the Backstory,” 42. Huffington Post, #Disability, accessed October 6, 2015, www.huffingtonpost.com/news/disability. BBC, Ouch: Disability Talk, accessed January 26, 2017, www.bbc.co.uk/programmes/p02r6yqw. “Disability Matters,” Voice America, accessed January 26, 2017, www.voiceamerica.com/show/1315/disabilitymatters. “Disability Radio World Wide with Jean Parker,” Radio for Peace International, accessed January 26, 2017, www.rfpi.org/disabilityradio. “The Body Is Not An Apology Is HIRING!” The Body Is Not An Apology, accessed January 26, 2017, http://thebodyisnotanapology.tumblr.com/post/98925771590/the-body-is-not-an-apology-is-hiring National Center on Disability and Journalism, Disability Language Style Guide, August, 2012, http://ncdj. org/style-guide. Beth Haller, email message to author, August 21, 2015. Ryfe, Can Journalism Survive, 138. Emily Craig-Evans, email message to author, September 15, 2015. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 20. Jones, “Pitching the Backstory,” 35. Jones, “Why This Story,” 1210. Jones, “Why This Story,” 1210. Helen Henderson, in discussion with student, Writing for Disability Activism Course, Ryerson University, Toronto, November 19, 2014.

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31 ADVERTISING DISABILITY AND THE DIVERSITY DIRECTIVE Josh Loebner

Introduction Inclusion of people with disabilities in advertising and the surrounding discussion and discourse has, until recently, predominantly been marginal and minimal at best. Media coverage and visibility of the subject, however, is now on the rise, in part due to internationally recognized brands choosing to include people with disabilities in their advertising and placing those ads during preeminent live broadcast events on a global scale,1 including the World Cup, the Olympics, Academy Awards and Super Bowl. The Future 100 annual trend report, published by ad agency J. Walter Thompson, noted advertising and disability as trend 39, stating, “there has been little representation of disabled people in either television or advertising. That is now changing.”2 This chapter aims to provide an engaging assessment of both empowering and stigmatizing representations of people with disabilities in advertising. It addresses a series of important questions and topics while sharing insights for academicians and advertisers centering on prior, current and future portrayal and inclusion of people with disabilities in advertising. Subjects covered include how advertising often elevates the ordinary to the extraordinary and the connection and association of disability, ableism and “inspiration porn” to the advertising industry. Also discussed are emerging shifts in parameters of recognition of people with disabilities as a relevant and influential minority among national-level advertising professional organizations, and the buying power this minority has connected to brand loyalty and brand engagement on digital platforms. The chapter concludes with the methods and best practices advertisers, ad agencies, industry influencers and the media can utilize to bring inclusion of people with disabilities into creative conversations and campaign executions. Before moving into discourse centered on advertising and disability to further establish context, it is important to consider what advertising is from a system and symbolic perspective. The American Marketing Association defines advertising from a systems and process standpoint as: The placement of announcements and persuasive messages in time or space purchased in any of the mass media by business firms, nonprofit organizations, government agencies, and individuals who seek to inform and/or persuade members of a particular target market or audience about their products, services, organizations, or ideas.3

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Media historian James Carey observed that advertising is part of a symbolic process whereby reality is produced, maintained, repaired and transformed.4 The transformation of the industry for greater inclusion needs to focus on both the systems and symbols within advertising. Proliferation of smartphones, media access anytime anywhere and always connected consumers, among other trends, have expanded not only the delivery, engagement and consumption of advertising but also its definition. Once considered a monologue, or one-way communication process, advertising can now, in part, be defined much more as an evolving dialogue with consumer-generated content, viral marketing and instantaneous feedback through social media. Campaign goals move beyond product sales to include social media likes, comments, shares and other online and offline conversations that drive engagement. To remain relevant, be an ongoing part of conversations and stay top-of-mind among consumers, many advertisers not typically associated with cause marketing or corporate citizenship are adding layers to brand messaging; they go beyond product features and benefits to narratives that support broader social movements and establish affiliation with or reinterpretation of cultural norms.5

The Shifting Nature of Advertising, Inspiration and Identity Rather than single out and objectify people with disability, advertisers have an opportunity to be inclusive within storylines to convey realistic portrayals. That said, the advertising industry is synonymous with inspiration and sensationalism, elevating mundane moments of people’s daily lives into epic narratives. Advertisers and ad agencies weave compelling storylines into products as ubiquitous as drinking water; with some bottled water brands positioned and priced as rarified luxuries. Often a 30-second TV commercial’s cinematic messaging goes beyond the focus of the product or service itself to the people featured in the ads. Cavalcades of athletes, celebrities and other spokespeople aren’t just product endorsers but seen by the viewer as larger-than-life and superhuman. Whether a make-believe persona or real human, from Mr. Clean® advertising his brand of floor polish, the Brawny® Man and his paper towels, or Taylor Swift promoting Diet Coke®, the stories of people and products in advertising are intertwined as an inspiration for consumers’ intent to purchase, to buy into not only the brand but also into a larger story of belief and belonging. People with disabilities fit within this belief and belonging—and in more inclusive advertising.6 Because advertising plays a significant role within our culture, it drives not only brand purchases and affinity, but also the construct of self as an individual and place in society.7 Portrayals of societal perfection, however misaligned, proliferate within the ad industry and cultivate an ableist view while significantly hindering flow of dialogue, interpretation and understanding of greater diversity and inclusion. The inclusion of disability in advertising is imperative to better educate, interpret and accept people with disabilities as a viable part of our capitalistic economy, community and culture. As an industry that exists to communicate with consumers of all backgrounds and walks of life, the advertising industry stands to benefit more than most by cultivating a highly diverse and inclusive environment that reflects the changing demographics around us.8

Economic Impact For many corporate advertisers, data mitigates risks and drives marketing decisions. While quantitative and qualitative information is readily available on purchase habits of minorities and customer segments, including African Americans, Hispanics, women and millennials, little data is available on people with disability as a market segment. Without data, then, US marketing teams within corporations may consider inclusion of this group a greater risk compared to inclusion of others. Yet according to Rich Donovan, CEO of the Return on Disability Group: 342

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Including friends and family in the people with disabilities population takes us from roughly 19 percent of the total U.S. population to more than 55 percent and as a brand you could make a decision to not look at the 19 percent of people with disabilities marketplace, but to ignore the inclusion of family and friends would be foolish. This isn’t a niche—it’s a blockbuster. Companies seeking new ways to create value for stakeholders have a strong interest in attracting the spending of this increasingly powerful cohort.9 Thus minimal visibility of people with disabilities in advertising belies the large purchasing power, brand loyalty and lifetime customer value of this market segment.

Lack of Disability Visibility in Ads and in Agencies While the definition of advertising is evolving rapidly, the dynamic inclusion of disability and diversity representation as a whole in the ad industry has been slow to progress and can, in some ways, be tied to anachronistic perceptions that linger from more than a century ago. The late nineteenth century saw innumerable achievements from the rise of the industrial revolution to the birth of capitalism and the beginnings of the advertising industry, but these promises of progress towards a better tomorrow actualized and further solidified the derision of minorities including people with disabilities into a figurative and literal caste system wherein identification within a marginalized group was tantamount to being an untouchable. During the nineteenth and twentieth centuries, several major US cities enacted so-called “ugly laws” banning people deemed “diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person” from public spaces.10 Surprisingly many cities not only still had these laws on the books until the mid-1970s, but also upheld them. While these ugly laws are no longer legally binding or align in any way with modern jurisprudence, the ableist worldview that initially gave rise to civic leaders enacting them and society codifying a dominant ableist viewpoint has, with few exceptions, maintained a continuum of second-class citizenry of people with disabilities that is ingrained in our culture. Big-budget photo and video productions are meticulously managed, down to minute details with storyboards, scripts, staff, handlers and stylists for everything from actors’ hair, makeup and clothing, to food styling, animal handlers and staging the shoot location to ensure every shot is crafted, curated and perfected. For decades that perfection of every aspect of brand storytelling extended to the hegemonic selection of talent in the ads elevating disproportionately whomever the advertiser deemed appropriate to portray their brand’s target audience. This meant, more often than not, actors and celebrity endorsers were white men and women and rarely included people of color, LGBTQ, people with disabilities or other minorities in lead roles within the ads. The cultural memory of ugly laws continues to persist into the twenty-first century with the ongoing lack of inclusion of people with disabilities in the media and advertising. In 2016, advertising industry trade publication Campaign posited the question of inclusion with this headline “The Invisibles: Why Are Portrayals of Disability So Rare in Advertising?”11 Among many other points, the author of the article states, “The key, as with other diversity issues, is seeing people as individuals and without labels.” The Ad Council, a private, non-profit organization, inspires ongoing dialogue, engagement and action around significant public issues, creating a measurable difference in society.12 The Ad Council’s Love Has No Labels campaign champions greater inclusion with goals of mitigating conscious and unconscious bias and embracing diversity with the mantra to put aside labels in the name of love. The campaign, launched on Valentine’s Day in 2015, incorporated a video13 that utilized technology to portray people behind a screen while showing their 343

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skeletons in certain interactivity or poses wherein the audience would have a certain viewpoint about who those people were, to then reveal a diverse group, such as two young friends, one with a disability the other without, potentially different from the audience’s initial perceptions based on unconscious bias. The Gay and Lesbian Alliance Against Defamation (GLAAD) produces an annual analysis of the overall diversity of prime-time scripted series regulars on broadcast and cable networks, with streaming media included for the first time in the 2016–2017 report. For the seventh year in a row, GLAAD’s Where We Are on TV report conducted a count of regular prime-time characters depicted as people with disabilities. While the 2017 American Community Survey conducted by the US Census Bureau reported 13.3 percent of US non-institutionalized citizens are living with an apparent disability, the 2018–2019 GLAAD report found that of all series regulars on prime-time broadcast programming, only 2.1 percent (18 characters) were people with disabilities.14 While minimal, this percentage and number of series regulars with disabilities more than doubled the 2015–2016 GLAAD report’s result of 0.9 percent, or eight characters. Networks and producers must pay close attention to diversity when creating new series, and that includes people with disabilities. Increasing these numbers should be just as important to advertisers who are paying for airtime during those prime-time shows. Seth Adam, director of Communications at GLAAD, notes: What’s clear is that equality is now important to a company’s bottom line, and it’s important that’s reflected in its marketing to consumers. Tracking the quantity and quality of people with disabilities in the media would be a great way to start having impactful conversations with networks, and then making that data public will help keep them accountable and move the needle.15 As recently as 2006, the New York City Commission on Human Rights found that larger ad agencies in New York City had minimal increases of hiring among minorities, particularly African Americans, which had not changed significantly since the 1960s, when the Commission held hearings on the same issue.16 The commission launched an investigation into diversity recruitment and hiring practices of 16 of the largest agencies, including Arnold, Euro RSCG, Saatchi & Saatchi, Grey Direct and Grey Interactive, Y&R, Ogilvy & Mather, Kaplan, Draft, FCB, Gotham, BBDO, DDB, Merkley & Partners and PHD.17 At the time of the commission’s investigations, editorial coverage included the Advertising Age article, “Still So White; Still No One Really Wants to Discuss It,” which shared that the wide spectrum of reasons agency executives cite for the low number of black employees in the advertising business range from nepotism, institutional racism, inertia and clients’ indifference to the issue.18 More generally, challenges with diversity hiring still exist within the industry. Insights from an American Association of Advertising Agencies, or 4A’s, survey conducted in June 2016 show that once hired, diversity challenges remain prevalent. When asked how the ad industry is doing when it comes to hiring diverse professionals, nearly half of respondents said the industry is terrible (20 percent) or not great (29 percent) and a quarter of respondents said it is mediocre. Approximately half of respondents said they believe agency culture is still discriminatory, but that the discrimination is not as overt as it used to be. For employees with disabilities 17 percent of those surveyed agree the industry is terrible at providing equal opportunities to people with disabilities (compared to white males), 29 percent felt it’s not great and 28 percent said it’s mediocre.19 In relation to these insights, Nancy Hill, former president and chief executive officer of the 4A’s stated: 344

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The ad industry must do more to hire diverse professionals who will create work that reflects our diverse consumer base; there is a very real appetite for that work. We’ve made some progress, but we have a lot more to do to make agencies a place where anyone can thrive, and everyone is represented.20 According to the US Bureau of Labor Statistics, of the 559,000 people employed in advertising, public relations and related services in 2017, almost half (49.2 percent) are women, 5.8 percent are black or African American, 7.4 percent are Asian and 8.9 percent are Hispanic.21 People with disability were not tracked.

An Industry Moving from Discrimination Towards Diversity and Inclusion Strides are being made among advertisers, ad agencies, professional organizations, consulting firms and advocates to individually and collectively move the industry towards greater inclusion. Gina Grillo, president and CEO of the Advertising Club of New York explained in an Advertising Age article: In advertising, building a staff with varied perspectives and knowledge about cultural nuances is crucial. Without it, there’s no way to communicate authentically in an ever more globalized business environment or in an America that grows more diverse by the day.22 Professional workshops, panel discussions, seminars, career fairs, internships, employee training, think tanks and consultation initiatives among educators, industry organizations, advertisers, HR staff, ad agency creative teams and others are building a foundation for progress. One of the leaders within this group who is spurring change and spearheading dialogue is Tari Hartman Squire, founder of EIN SOF Communications, a full-service marketing firm specializing in disabilityinclusive diversity and public policy. Squire and the EIN SOF Communications team consult and partner with major advertisers, including AT&T, Bank of America, HP, Macy’s, Mattel, Microsoft, Starbucks, Toys “R” Us, Walgreens, Mondelez and advertising agencies and professional organizations, including Droga5, BBDO, the American Association of Advertising Agencies and the Association of National Advertisers among others.23 Squire explained in 2015 that “media has the power to shatter stereotypes or reinforce images, and I wanted to work directly with the media to create more realistic images.”24 Championing inclusion of people with disabilities in the media since the late 1970s, Squire won the Visionary Award for 25 years of collaborative leadership as founding executive director of Media Access and for launching the Screen Actors Guild performers with disabilities committee. Squire’s advocacy initiatives expanded in 2015, when EIN SOF Communications in partnership with the Loreen Arbus Foundation committed to launch Lights! Camera! Access! 2.0 (LCA2.0) to address underrepresentation of people with disabilities in media through events that bring together advertising, media and entertainment professionals to provide mentoring opportunities for high school and college students with disabilities.25 In 2017 LCA2.0 events were held in major markets across the country including New York and Los Angeles and at the highest levels of government, including an event in Washington, DC facilitated by the White House. While these events foundationally create guidance and insights for youth, these gatherings of seasoned media executives, academicians and consultants further foster bonds, add networking opportunities and build camaraderie and recognition among the professionals that attend. Among advertising and marketing professional organizations, the US Association of National Advertisers (ANA) took the lead in recognizing inclusion of people with disabilities. In 2014, the 345

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ANA introduced the Multicultural Excellence Award in the People with Disabilities category, the first award of its kind in the industry, honoring outstanding work in the disability sector. Breakout sessions and a presentation on the main stage centering on advertisers and disability added value for the conference attendees not only to participate in recognition and awards but also to educate and empower advertisers as advocates. Janine Martella, former director of committees and conferences for the ANA, said, “The ads show that these people are part of family and friends of all abilities and within a larger multicultural community.”26 The 2016 Multicultural Excellence Award recipients recognizing people with disabilities included the following brands, campaigns and agencies: • • •

Duracell (Berkshire Hathaway) “Stay Connected,” Anomaly;27 Walt Disney World “Unforgettable Happens Here—The Mansfield Family,” Disney’s Yellow Shoes (in-house); and28 Autism Speaks “The World of Autism,” BBDO New York.29

These winners recognize that best practices on portrayals and inclusion of people with disability isn’t as simple as hiring actors with disabilities. Two advertising campaigns from Australia show, for better and worse, the opportunities and pitfalls of diversity and disability inclusion. What was touted as one of the of the most diversity-friendly commercials to date, to promote enjoying lamb on Australia Day, was in fact one of the worst examples of progressive inclusion in media. With so much diversity, how could this commercial, the ad agency creative team and ultimately the client miss the mark so completely when it comes to inclusion best practices? Simply put, people were props. The campaign with the hashtag #unitedwelamb was to show how lamb could bring everyone together on Australia Day. The client, Meat and Livestock Australia, shared “What’s the best thing about diversity? Everything! So let’s all unite with the meat that doesn’t discriminate, lamb.”30 While the supposedly light-hearted commercial brought together dozens of Australians with varied physical looks and abilities and from diverse races, religions and cultures, the execution came across as stereotypical and hackneyed. In some ways we can applaud the fact that more advertising is inclusive of people with disabilities. But this newfound visibility without informed and educated planning and portrayals could potentially be more damaging than no inclusion at all. By continuing and even adding to misconceptions and misrepresentation, or simply not telling as rich a story, ads can create more barriers. Some brands are making a difference, though. Australian retailer Target took a more grounded approach with a commitment to diversity, inclusion and representation of people with disabilities in advertising. Robyn Lambird, a 19-year-old, who has cerebral palsy and is an advocate for people living with disability, is featured in Target Australia’s activewear catalogue. At the time of the campaign, she was believed to be among the first adults with a visible disability to star in an advertising campaign for a major Australian retailer.31

Commercials and Controversy: Inspiration Porn At the intersection of disability narratives, inspiration and advertising, there is a crossroads where differing interpretations arise centering on topics of realistic portrayals and inspiration porn. The late writer and disability advocate Stella Young put inspiration porn on the international stage through her 2014 TED talk, saying that everyday activities and daily lives by people with disabilities should not be aggrandized or glorified and that doing such could be considered inspiration porn.32 From an ableism perspective, inspiration porn is the interpretation that when a person who is able-bodied interacts with a person with a disability whether directly or via engagement 346

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through media, the person who is able-bodied feels better about themselves, has a higher perceived self-worth and considers the individual with a disability pitiful and less than themselves. When a person who is able-bodied uses phrases such as “you are so inspiring” directed towards individuals with disabilities, the usage of the word inspiration is often empty, without any attributed action to do something based on the inspiration other than the able-bodied individual gaining perceived empowerment. In an Australian Broadcasting Corporation blog article Young observed, But using these images as feel-good tools, as “inspiration,” is based on an assumption that the people in them have terrible lives, and that it takes some extra kind of pluck or courage to live them. For many of us, that is just not true.33

Supercrips, Paralympics and the Super Bowl At one end of the spectrum of the portrayal of people with disabilities in the media is that of the “supercrip,” a person with disabilities who “overcomes” some obstacle to become what could be perceived as superhuman.34 More often than not, when people with disabilities are included in commercials centered around sporting events, the person with disabilities in the advertising is an elite athlete, one of only a few to achieve certain sporting goals, typically unattainable by the majority of both able and disabled people; therein presenting an unachievable narrative that inhibits true-to-life narratives and interactions. On the grand stage of the Super Bowl, every aspect of advertising is heightened, from the multimillion-dollar production budgets to the cost of the airtime, to the TV commercial storylines and the people in the ads, including those with disabilities. One disability-inclusive commercial during the 2015 Super Bowl XLIX was the Toyota Camry ad featuring doubleleg-below-the-knee amputee Amy Purdy accomplishing a number of athletic achievements.35 Does this Toyota ad cast a positive or negative light on physical disability? Some could argue that the ad is a continuation of media’s portrayal of people with disabilities within the supercrip stereotype, which may be emotionally engaging to non-disabled audiences but also glorify an unattainable reality for many of those with the same or similar disabilities. What if the Paralympics competitions expanded into awarding medals for each country’s best inclusion of people with disabilities in advertising? Britain would be leagues ahead of the United States and here’s why. Nike’s Unlimited Will36 featuring Kyle Maynard, the first quadruple amputee to climb Mount Kilimanjaro without prosthetics, was one of the most remembered commercials, but there were some challenges with the creative execution. The spot opens with Maynard climbing a snowy mountain peak as the voice-over says, “Here is a man, working hard, pushing his limits.” He then asks Maynard if he has “got this,” with the mountaineer replying in the affirmative, then the voice-over is taken aback when the camera pans out to reveal that Maynard is making the climb without arms and legs. The voice-over says, “You don’t have legs either!?” and Maynard replies “Oh really? I must have left them at home.” Seeing Kyle climb is inspirational, but is it the right kind of inspiration or the best inclusion? What if Kyle was another minority; a woman, person of color or an individual in the LGBTQ community and the voice-over, instead of saying “you don’t have arms” said, in a shocked tone, “you’re black and you’re on a mountain?” This portrayal, to an extent, presents an oversimplified and one-dimensional representation of a person with a disability, or any other minority. This also presents the person with a disability as a supercrip, a format that does not easily resonate beyond the ad execution into the real world. Inclusion also does not work to its fullest when only the minority, in this case, a person with a disability, is the primary focus. This is where British candy brand Maltesers® truly won the day, by being inclusive, in everyday situations in a campaign that brought humor and unprecedented international press coverage 347

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to the rarely discussed topic of advertising and disability. The campaign featured three different commercials: • • •

New Boyfriend—When a romantic moment is interrupted by a spasm, our heroine takes it in her stride … Maltesers believes that life is better when we don’t take things too seriously.37 Dance Floor—When wedding celebrations end in disaster, at least one guest manages to look on the light side … Maltesers believes that life is better when we don’t take things too seriously.38 Theo’s Dog—Theo’s dog is in the doghouse … at least until tomorrow! Maltesers believes that life is better when we don’t take things too seriously.39

Adweek’s Tim Nudd, commented, The spots are very well done, and manage the difficult trick of helping to normalize disability, through funny and relatable anecdotes, without taking away from the very real challenges that disabled people face. That light-hearted approach should help viewers think about disability in a more open way.40 Cat Collins, strategy partner at AMV BBDO noted, Rather than creating distance by putting disabled people on a pedestal, we believed we could achieve more by showing disabled people simply as … people. For Maltesers, that meant seeking out the hilarious stories from their lives that they look on the light side of, just as the characters in the rest of our campaign do. It meant using a powerful weapon to break down discomfort, division and prejudice—a good laugh.41

Realistic Portrayals and Inclusion Becoming the Norm in Advertising “Nothing About Us Without Us” is a rally cry championed by people with disabilities, which references the fact that any interpretation, inclusion, historical documentation or other narrative of people with disabilities should, as a central tenet, welcome and include people with disabilities in the formation of that messaging. The slogan’s power derives from its location of the source of many types of disability oppression and its simultaneous opposition to such oppression in the context of control and voice.42 For advertising to truly shift towards realistic portrayals and greater inclusion of people with disabilities, it is integral for people with disabilities to be a part of every phase of creative and campaign development. Apple recognizes the positive power of technology tied to accessibility and continues to advance momentum not only within their devices and operating systems featuring advanced functionality for people with disabilities, but also in conveying that message to a broader audience. To help introduce new accessibility features incorporated on all Apple devices in 2016, the company collaborated on a commercial43 that didn’t just include people with disabilities, but embodied the “Nothing About Us Without Us” mantra by utilizing the post-production and editing talents of Sady Paulson, a Final Cut Pro expert, who by the way, is non-verbal with cerebral palsy. At the end of the commercial it is revealed that Paulson was the editor of the ad, and therein brought to the forefront consideration of shifting perceptions of people with disabilities. Mondelez International, maker of Honey Maid graham crackers, has added layers into their brand messaging that go beyond consumer packaged goods’ features and benefits to show how the brand fits into inclusive families. The advertiser partnered with ad agency Droga5 to develop 348

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the “This Is Wholesome” campaign, which, over the course of the commercials, featured a mixed-race family, same-sex family and, in July 2015, introduced a spot with a disabled aunt and her niece making a snack. With no spotlight or significant focus on the person with disability, the narrative quietly conveys the normalcy of the reality of a family made up of people of differing abilities. Gary Osifchin, portfolio lead for biscuits at Mondelēz International, said that: The “This Is Wholesome” campaign [was] launched in March 2014 and has been committed to featuring a cross-section of the American family. From a same-sex couple and single dad, to a mixed-race military family, a blended and an immigrant family, the sweet moments between a disabled aunt and her niece are just another example of Honey Maid’s commitment to feature real American families and the wholesome connections they share.44 Stephanie Woodward, the woman who portrayed the aunt is a disability rights lawyer and activist who is currently director of advocacy at the Center for Disability Rights, signed on for the project, Honey Maid says, “because she—and many in the disabled community—want real disabled people featured on TV and in the media, not actors playing disabled people.”45 The Honey Maid commercial46 was innovative not only in the narrative and overall message, but also in the use of assistive technologies. It was one of the first TV spots to include audio description on the 15-second TV version, which describes what’s happening on-screen for blind and low-vision audiences, along with standard closed captioning. Honey Maid’s campaign continued to include diversity and people with disability with the commercial Husband47 about a veteran returning home. Creative Director Devon Hong explained, “What was important to us was that there was a change in the family, where a situation needed to be accepted. It was a natural fit to go down the road of looking for an injured veteran.”48

Watershed Moment with Consumer-Generated Media Advertising not only reflects, but shapes cultural norms, and it has been argued that mass media and advertising are drivers of cultural hegemony.49 For many decades those top-down messages were highly curated and crafted from the advertisers and ad agencies, but social media is allowing everyone to participate in larger ways to continue creating and extending brand messaging through consumer-generated content. Douglas Atkin, partner and chief strategy officer at advertising agency Merkley + Partners, explained: The consumer is looking to brands to give a sense of fulfillment that society and religions used to offer. They want brands to take stands on things. Brands have values. Brands have points of view. Brands have personalities. Brands are whole societies in which they participate. If you don’t have those things, then you’re likely to fail, or at least not to be as profitable as you could be.50 In the summer of 2014 an online movement rapidly swept across the world with such force that presidents and prime ministers, sports stars, Hollywood celebrities, journalists and millions of others took part in a simple, yet compelling, process of pouring ice water on themselves. This was the ALS Ice Bucket Challenge that according to the ALS Association “became the largest global social media phenomenon to date.”51 Participation involved pouring ice water on oneself, filming it within 24 hours of receiving an invitation or donating USD 100 toward ALS (amyotrophic lateral sclerosis) research. While the ice bucket challenge was not initially developed by the 349

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ALS Association’s marketing team, as the campaign took hold and more people focused their donations towards the ALS Association, the organization guided efforts to continue momentum.52 The challenge went beyond a viral video shared online to more than 17 million people uploading their videos to Facebook, which were watched by 440 million people and shared a total of 10 billion times. These challenges translated into international media coverage and USD 115 million donated in an eight-week period in 2014.53 It is now an annual event to raise awareness and funds to find treatments and a cure for ALS. Barbara J. Newhouse, president and CEO of the ALS Association said, Words cannot express how incredibly grateful we are to the tens of thousands of people who have donated to support the fight against ALS. The money and the awareness generated through this effort are truly game-changers in the fight against this disease.54 So successful was the campaign that the ALS Ice Bucket Challenge won two gold Lions in Cannes’ Branded Content and Entertainment category in 2015 and the coveted Grand Prix for Good, one of the highest honors within the global advertising industry.55 With so many dollars donated, exposure garnered and awareness gained, the ALS Ice Bucket Challenge appeared to be the perfect example of what to emulate. While marketers and advertisers concede that there is no magic formula for creating a viral social media sensation like this, many have tried to replicate similar interactive challenges with the goal of generating worldwide attention and action. So far, none have been as successful, including efforts of the ALS Association themselves. Some in the disability community have also criticized the ALS Ice Bucket Challenge, believing that it oversimplified the disease, treatment and donations. Melissa Lovitz, a writer with a pain syndrome, said in reference to a similar social media challenge using ice water and trying to connect it to complex regional pain syndrome that, “I don’t need anyone to experience my pain to empathize with me.”56 Also, the many more millions of dollars and attention gained for the ALS Association through the Ice Bucket Challenge means millions of dollars less and lower visibility for other deserving non-profits. Defined as fundraising cannibalism,57 people are limited in how much they are willing to donate, and if someone donates money to the ALS Association, he or she will likely donate less to other charities. Among other criticisms, the challenge encouraged participants to use large amounts of water during a major drought across much of the United States. While the Ice Bucket Challenge did raise millions of dollars, it also raised questions about hashtag activism58 and increased slacktivism, a portmanteau of the words slack and activism. Daily Telegraph journalist Willard Foxton described the challenge as “a middle-class wet T-shirt contest for armchair clicktivists.”59 A simple click of the “like” button on social media and sharing the action with online friends and followers presents an immediate gratification towards perceived accomplishment and philanthropic engagement. Ultimately, though, similarly themed online challenges may be a detriment to more educated, ongoing care and commitment to a cause.

Social Media’s Rising Chorus of Disabled Voices Recognizing the significant impact of social media on propelling awareness and action for major efforts such as the ALS Ice Bucket Challenge, there have been increasing examples of people with disabilities sharing their stories and connections to brands, advertisers and media in general, including film series and podcasts. Manicured communication from advertisers, however well crafted, now has a sounding board online and in social media wherein brand activations and social activists collide and come together, to share in conversations about advertising, media and the advancements of people with disabilities and challenges still to overcome.

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Examples of the people and groups that combine to create just a small part of a much larger chorus of voices surrounding media, advertising and disability show a variety of approaches. Rooted In Rights is an advocacy group based in Washington State that produces videos and social media campaigns exclusively on disability rights issues.60 The Accessible Stall podcast series, produced and hosted by Kyle Khachadurian and Emily Ladau, is described by the hosts as two people trying to untangle the giant web of disability.61 Film director, activist and speaker Dominick Evans hosts #FilmDis, a weekly discussion held on Twitter that explores film, television and other aspects of media through a disability perspective.62 The blog Advertising & Disability, founded by Josh Loebner, looks at, with a critical lens, current portrayals and inclusion of people with disabilities in advertising.63 Lawrence Carter-Long, director of communications for the Disability Rights Education and Defense Fund can be found on all manner of social media and traditional media enthusiastically and emphatically advocating towards greater media inclusion for people with disabilities. His #SayTheWord campaign brought light to the fact that the word disabled is still misunderstood, and often maligned.

Embracing Disability Inclusion in Online Experiences Today, advertising goes well beyond TV commercials and print ads into the digital world of immersive online experiences, in-app advertising, campaign landing pages, pre-roll videos, digital display ads and so many other interactive engagements where best practices for disability inclusion needs to be considered. A study by IBM Research in 2013 showed 95 percent of the pages of 1,000 popular websites had known accessibility problems for people with disabilities.64 Todd Bankofier, CEO of accessibility software company AudioEye, contends, Even the most well meaning brand leaders and site designers have too narrow a view of what constitutes disability … It’s not just people who are blind, deaf, or use wheelchairs: people with autism, PTSD, visual impairment, epilepsy, dyslexia or colorblindness all have different needs for digital access.65 There are dozens upon dozens of accessibility consultants building and rebuilding online platforms to meet accessibility guidelines, and while it’s good that these consultants are optimizing websites to be more inclusive through universal design to meet web-content accessibility guidelines, it’s challenging that we need to have consultants in the first place and that more advertising agencies and interactive firms aren’t training their teams to build with universal design in mind from the ground up on web development. SapientNitro’s Associate Creative Director, Philip Golub noted, Your clients have more users with disabilities than you probably realize, and those disabled users have great purchasing power. Accessibility does not limit innovativeness or interactivity, but not planning for Accessibility can have a very limiting effect on profitability. With proper planning and a little forethought, your projects, your clients, and their users can all reap the benefits of Accessibility.66

Conclusion While only a handful of ads inclusive of people with disabilities are discussed in this chapter, numerous other print ads and TV commercials exist and can be found through general online searches and dedicated databases. In many ways, people with disabilities are gaining visibility 351

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within advertising, but there is still a large need for advocacy, education and guidance. Academicians, advertisers, organizations both within the ad industry and the disability community, journalists and individuals’ collective voices on social media can all play a part. Many in the disability community want to be seen within, and representing the disability minority group, owning unashamedly every aspect of who they are—“Nothing About Us Without Us.” Ad campaigns should welcome and incorporate these differences rather than try and fit the disabled minority into the standards of society’s ableist hegemony. When people with disabilities are included in advertising there is a creative pendulum where, at one extreme, portrayals convey pity, support ableist discrimination and show that people with disabilities are less than considerations of normalcy. At the other extreme, people with disabilities are portrayed as superhuman, disingenuous or misguided inspiration that individuals with disabilities may not desire. At the center of the creative pendulum of disability, advertisers have an opportunity to be inclusive within storylines that convey realistic portrayals, expand meaning and engender persuasion in a powerful and positive way. At the college and university level, where students are gaining foundational knowledge and academicians are guiding future professionals, diversity and inclusion needs to be incorporated into courses within advertising and communications programs. Greater inclusion of people with disabilities in ad agencies and among advertisers starts with better-targeted recruiting efforts for people with disabilities. In creative and administrative staff positions people with disabilities will not only be able to be internal champions for greater inclusion, but also to add their voices to best practices in portrayals of people with disabilities in the advertising. Advertisers and agencies pay close attention to brand sentiment and conversations within social media channels. Now, more than ever, people with disabilities have significant opportunities to utilize social media and online platforms to rally, engage and activate decision makers at agencies and among brands and foster conversations about advertising and disability. Creative directors, copywriters, producers and other industry decision makers need to be advocates for hiring agency staff and working with actors with disabilities to portray people with disabilities, but their inclusion and portrayals in advertising shouldn’t be about typecasting or tied to using them as props. Yes there are potential risks and pitfalls to including people with disabilities, but the same is true with diversity and inclusion of any minority, and on the other end of the spectrum there are major rewards and benefits. For creative directors and directors of marketing there is an opportunity to be creative, but also to be informed and to take an approach to inclusion that isn’t just for one ad or to meet a diversity quota, but as part of a long-term campaign plan, where the creative planning process is proactive in reaching out to people and organizations in the disability community to ensure messaging is on target. For those making decisions that tie back to bottom-line profitability, recognizing that the inclusion of people with disabilities in market research will not only elucidate how the largest minority group in American relates to a brand, but also how a brand can better relate to them. This requires being open and understanding that people with disabilities are part of the customer mix—buying products, using services, being brand loyal and impacting the bottom line for the better. The advertising industry has made significant strides in championing and hiring people of color, LGBTQ and women minorities. Now is the time for advertising agency leadership to recognize the value people with disabilities bring to campaign development, creative narratives and customer conversions.

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Notes 1 Allen Rucker, “Is Adland Really Changing?” New Mobility 27, no. 271 (April 2016): 26–31. 2 Innovation Group, “The Future 100: Trends and Change in 2017,” JWT Intelligence, December 1, 2016, www.jwtintelligence.com/2016/12/future-100-trends-change-2017. 3 American Marketing Association, “Dictionary: Definition of Advertising,” accessed November 20, 2015, www.ama.org/resources/Pages/Dictionary.aspx. 4 James W. Carey, Communication as Culture (New York: Routledge, 1989), 23, quoted in Richard Campbell, Christopher R. Martin and Bettina Fabos, Media & Culture: Mass Communication in a Digital Age (Boston: Bedford/St. Martins, Macmillan Learning, 2017). 5 Arnold Weimerskirch, “The Evolution of Corporate Citizenship in the U.S. Continues,” Star Tribune, April 24, 2015, www.startribune.com/the-evolution-of-corporate-citizenship-in-the-u-s-continues/ 301288931. 6 Geoffry Lantos, “Advertising: Looking Glass or Molder of the Masses?” Journal of Public Policy & Marketing 6, no. 1 (1987): 104–128. 7 Richard Elliot, “Existential Consumption and Irrational Desire,” European Journal of Marketing 31, no. 3/4 (March–April 1997): 285–296. 8 Gina Grillo, “The Advertising Industry Needs Diverse Leadership to Thrive,” Advertising Age, April 23, 2015, http://adage.com/article/agency-viewpoint/advertising-industry-diverse-leadership-thrive/297998. 9 Quoted in Josh Loebner, “Shifting Perceptions and Shaping the PWD Story Around Profitability,” Advertising & Disability, March 24, 2015, http://advertisinganddisability.com/2015/03/24/shifting-perceptions-shap ing-the-pwd-story-around-profitability. 10 Susan M. Schweik, The Ugly Laws: Disability in Public (New York: New York University Press, 2009). 11 Kate Magee, “The Invisibles: Why Are Portrayals of Disability So Rare in Advertising?” Campaign, September, 2016, www.campaignlive.co.uk/article/invisibles-why-portrayals-disability-so-rare-advertising/ 1407945. 12 Ad Council, “About Us,” accessed September 12, 2017, www.adcouncil.org/About-Us. 13 Love Has No Labels/Diversity & Inclusion, produced by the Ad Council, March 3, 2015, video, www.you tube.com/watch?v=PnDgZuGIhHs. 14 GLAAD, Where Are We On TV Report 2018–2019 ([Los Angeles, CA]: GLAAD Media Institute, 2018), http://glaad.org/files/WWAT/WWAT_GLAAD_2018-2019.pdf. 15 Seth Adam, quoted in Josh Loebner, “Leading the Conversation. Shaping the Media Narrative. Changing the Culture. That’s GLAAD at Work,” Advertising & Disability, February 11, 2015, http://advertisinganddi sability.com/2015/02/11/leading-the-conversation-shaping-the-media-narrative-changing-the-culture-thatsglaad-at-work. 16 New York Commission on Human Rights, “Top Ad Agencies Sign Historic Diversity Agreements with CCHR,” CCHR Newsletter (2006), www.nyc.gov/html/records/pdf/govpub/6638newsletter_2006.pdf. 17 New York City Commission on Human Rights, 2006 Annual Report (New York: New York City Commission on Human Rights, 2006), accessed November 20, 2015, www1.nyc.gov/assets/cchr/downloads/ pdf/annual06.pdf. 18 Lisa Sanders, “Still So White; Still No One Really Wants To Discuss It,” Advertising Age 75, no. 25 (June 2006), https://adage.com/article/news/advertising-industry-white-discuss/109977. 19 “4A’s Survey: 74 Percent Believe Ad Agencies Are Mediocre or Worse at Hiring Diverse Professionals,” American Association of Advertising Agencies, September 27, 2016, www.aaaa.org/4as-survey-74-percentbelieve-ad-agencies-mediocre-worse-hiring-diverse-professionals. 20 “4A’s Survey: 74 Percent Believe Ad Agencies Are Mediocre.” 21 Bureau of Labor Statistics, “Employed Persons by Detailed Industry, Sex, Race, and Hispanic or Latino ethnicity 2017,” accessed November 10, 2018, www.bls.gov/cps/cpsaat18.htm. 22 Gina Grillo, “The Advertising Industry Needs Diverse Leadership to Thrive.” 23 EIN SOF Communications, “Success Stories,” accessed April 4, 2016, http://einsofcommunications.com/ success_stories. 24 Tari Hartman Squire, telephone interview with author, November 22, 2015. 25 EIN SOF Communications, “Lights! Camera! Access! 2.0,” accessed December 27, 2018, https://einsofcom munications.com/lights-camera-access-2-0. 26 Janine Martella quoted in Josh Loebner, “Disability on the Main Stage for the Association of National Advertisers’ Multicultural Marketing & Diversity Conference,” Advertising & Disability, October 11, 2015, http://advertisinganddisability.com/2015/10/20/disability-on-the-main-stage-for-the-association-ofnational-advertisers-multicultural-marketing-diversity-conference.

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Josh Loebner 27 OfficialDuracellUK, “Duracell—Stay Connected with Hearing Aid Batteries,” YouTube, December 20, 2016, www.youtube.com/watch?v=d0i8JOUXiBc. 28 DisneyParks, “Unforgettable Stories—The Mansfield Family | Walt Disney World,” YouTube, March 1, 2016, www.youtube.com/watch?v=StLmmsJGNQ8. 29 AutismSpeaksVids, “The World of Autism PSA—Autism Speaks,” YouTube, November 5, 2015, www. youtube.com/watch?v=0idZghw97dc. 30 “What’s the Best Thing About Diversity? Everything!—You Never Lamb Alone,” YouTube, September 1, 2016, www.youtube.com/watch?v=11hU3mftkig. 31 Steve Butler, “Wheelchair Athlete Robyn Lambird in Target Modelling Campaign,” West Australian, September 14, 2016, https://thewest.com.au/news/australia/wa-wheelchair-athletes-fashion-ad-first-in-newtarget-campaign-ng-ya-118142?r=1#page1. 32 Stella Young, “I’m Not Your Inspiration, Thank You Very Much,” TEDxSydney, April 2014, www.ted. com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en. 33 Stella Young, “We’re Not Here For Your Inspiration,” Ramp Up, July 2, 2012, www.abc.net.au/rampup/ articles/2012/07/02/3537035.htm. 34 Joanne Bauman, “How Changing Ads in Health and Fitness Can Change Attitudes,” National Center on Health, Physical Activity and Disability, November 2002, www.nchpad.org/210/1393/ How~Changing~Ads~in~Health~and~Fitness~Can~Change~Attitudes. 35 “Amy Purdy One Bold Choice Leads to Another,” YouTube, posted by Wall Street Journal, January 26, 2015, www.youtube.com/watch?v=GNOzKxJTCoo. 36 “Nike—Unlimited Will,” YouTube, accessed December 27, 2018, www.youtube.com/watch? v=EVzaFyhN8hU. 37 “NEW Maltesers Ad—New Boyfriend,” YouTube, September 7, 2016www.youtube.com/watch? v=YgUqmKQ9Lrg. 38 “NEW Maltesers Ad—Dance Floor,” YouTube, September 7, 2016, www.youtube.com/watch?v=UB8– PFAJDE. 39 “NEW Maltesers Ad—Theo’s Dog,” YouTube, September 7, 2016, www.youtube.com/watch? v=lYIEAIogarI. 40 Tim Nudd, “A British Candy Brand Will Air This Funny Ad Entirely in Sign Language With No Subtitles,” Adweek, September 6, 2016, www.adweek.com/creativity/british-candy-brand-will-air-funny-adentirely-sign-language-no-subtitles-173288/. 41 Channel 4, “Mars Chocolate UK Celebrates Diversity in New Ad for Maltesers,” accessed September 24, 2017, www.channel4.com/info/press/news/mars-chocolate-uk-celebrates-diversity-in-new-ad-formaltesers. 42 James I. Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkeley: University of California Press, 2000). 43 Apple—Accessibility—Sady, October 27, 2016, www.youtube.com/watch?v=XB4cjbYywqg. 44 Tim Nudd, “Honey Maid’s Latest Wholesome Family Features a Disabled Aunt and Her Niece,” Adweek, July 24, 2015, www.adweek.com/adfreak/honey-maids-latest-wholesome-family-features-disabled-auntand-her-niece-166102. 45 Nudd, “Honey Maid’s Latest Wholesome Family.” 46 “Honey Maid: How To Make Apple & Cheddar Melts,” YouTube, posted by Honey Maid, July 24, 2015, www.youtube.com/watch?v=d4TncEFoI3Q. 47 “Honey Maid—Husband,” Vimeo, September 12, 2017, https://vimeo.com/212636018. 48 I-Hsien Sherwood, “How Amputees Became the Disabled Darlings of Madison Avenue,” Campaign, September 9, 2016, www.campaignlive.co.uk/article/amputees-became-disabled-darlings-madison-avenue/1408234. 49 David R. Croteau and William D. Hoynes, Media/Society: Industries, Images & Audiences, 3rd ed. (Thousand Oaks, CA: Sage, 2003). 50 Quoted in PBS, “Frontline: The Persuaders,” interview, February 2, 2004, www.pbs.org/wgbh/pages/ frontline/shows/persuaders/interviews/atkin.html. 51 ALS Association, “Ice Bucket Challenge—FAQ,” accessed December 27, 2018, www.alsa.org/about-us/ ice-bucket-challenge-faq.html? 52 Josh Levin, “Who Invented The Ice Bucket Challenge?” Slate, August 22, 2014, www.slate.com/articles/ technology/technology/2014/08/who_invented_the_ice_bucket_challenge_a_slate_investigation.html. 53 ALS Association, “Ice Bucket Challenge,” accessed December 27, 2018, www.alsa.org/fight-als/icebucket-challenge.html. 54 ALS Association, “Ice Bucket Donations Surpass $10 Million to The ALS Association,” August 16, 2014, www.alsa.org/news/archive/ice-bucket-donations-surpass.html.

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Advertising Disability 55 David Griner, “Ice Bucket Challenge Wins 2 Gold Lions in Branded Content and Cannes’ Top Honor for Nonprofits,” Adweek, June 27, 2015, www.adweek.com/news/advertising-branding/ice-bucket-challengewins-2-gold-lions-branded-content-cannes-165615. 56 Melissa Lovitz, “4 Reasons I Don’t Want This New Ice Bucket Challenge To Go Viral,” The Mighty, March 4, 2016, https://themighty.com/2016/03/4-reasons-i-dont-want-this-new-ice-bucket-challenge-togo-viral. 57 William MacAskill, “The Cold Hard Truth About The Ice Bucket Challenge,” Quartz, August 14, 2014, http://qz.com/249649/the-cold-hard-truth-about-the-ice-bucket-challenge/#/h/9574734. 58 Arielle A Pardes, “Dumping a Bucket of Icewater On Your Head Does Not Make You a Philanthropist,” Vice, August 13, 2014, www.vice.com/read/dumping-a-bucket-of-ice-on-your-head-does-not-make-youa-philanthropist-813. 59 Lucy Townsend, “How Much Has The Ice Bucket Challenge Achieved?” BBC News, September 2, 2014, www.bbc.com/news/magazine-29013707. 60 Rooted In Rights, accessed August 15, 2017, www.rootedinrights.org/about. 61 Apple iTunes, The Accessible Stall, podcast, accessed August 15, 2017, https://itunes.apple.com/us/podcast/ the-accessible-stall/id1105184406?mt=2. 62 Dominick Evans, “#FilmDis,” The Crip Crusader, accessed August 15, 2017, www.dominickevans.com/filmdis/. 63 Advertising & Disability, accessed September 24, 2017, https://advertisinganddisability.com. 64 Vagner Figueredo de Santana and Rogério Abreu de Paula, “Web Accessibility Snapshot: An Effort to Reveal Coding Guidelines Conformance,” in W4A ‘13 Proceedings of the 10th International CrossDisciplinary Conference on Web Accessibility, Article No. 2, Rio de Janeiro, Brazil, May 13–15, 2013 (New York: ACM, 2013). 65 Zoë Beery, “Accessible Website Design for Users with Disabilities Lags Far Behind Demand,” Campaign US, September 18, 2017, www.campaignlive.com/article/accessible-website-design-users-disabilities-lagsfar-behind-demand/1444790#Eo3tms2CTsIex1pW.99. 66 Phillip Golub, “Accessibility Is Not a Feature: How to Incorporate Accessibility in Your Project Methodology,” accessed September 23, 2017, www.sapient.com/content/dam/sapientnitro/assets/white-papers/ 1156.pdf.

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32 DISABILITY ADVOCACY IN BBC’S OUCH AND ABC’S RAMP UP Shawn Burns

It was an unexpected, if not unfamiliar, scene that greeted the Australian Broadcasting Corporation (ABC) staff at their Melbourne, Australia, offices on a cold Monday, June 30, 2014. About 20 people with disability, many using wheelchairs and their supporters were gathered at the main entrance to the Southbank headquarters to protest the axing of the disability website Ramp Up.1 The protesters brandished placards to literally spell out their purpose. The signs urged: “Save Ramp Up,” “Ramp Up Is Our Voice,” “Disability, Discussion, Debate. Don’t Ditch Ramp Up,” and “Ramp Up Is Our Voice, It’s A Right Not A Choice.” A chant filled the air: “Hey, hey, ho, ho, Ramp Up should not go.” Police were called when protester and “Save Ramp Up” coordinator Dr. George Taleporos refused to leave the foyer of the ABC building.2 Some of the protesters and supporters mused online and at the protest line that they could be arrested and taken to lock-up, until they realized the police wagons were probably not wheelchair accessible and an actual arrest could come down to a question of disability access. The protest was devised to draw attention to the demise of what Ramp Up proponents, this author included, claimed was the loss of an important vehicle for people with disability to tell their stories, raise their issues and have their opinions heard.3 People with disabilities, disability activists and allies have had and continue to have, a strained relationship with the Australian news media. For the most part, this fraught relationship emanates from the way disability is represented in the mainstream. Much has been written about the way people with disability are represented in the media, including news publications and broadcasts4 and how media representation affects the way people perceive disability.5 Despite this work, and the many media guidelines developed and distributed over the years from places like the United States, Australia and the International Labour Organization,6 mainstream media still often present disability within the traditional frames of tragedy and hero.7 As Canadian disability studies scholar Chelsea Temple Jones contends: “Journalistic representations of people with disabilities are continuously stereotypical.”8 The remedy for this problem, the supporters of Ramp Up and other publications of its type would contend, is advocacy journalism, or, what could be termed for the disability community “self-advocacy” journalism.9 This chapter explores the relationship between disability and advocacy journalism through the case studies of ABC Ramp Up and the groundbreaking BBC Ouch blog in the United Kingdom. First, it looks briefly at the history of advocacy journalism and considers the relationship of disability and the media through the lens of journalism created to highlight disability issues and the opinions of people with disability. 356

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Disability and Advocacy Journalism Advocacy journalism has been tracked from the early nineteenth century—when it was variously known as muckraking,10 dissident press,11 radical journalism, critical journalism or activist journalism.12 Kessler documents in US history, for example, that many outsider groups like Black Americans, feminists, American Indians or socialists, who were denied access to the mainstream, began their own media outlets.13 Jensen described advocacy journalism as “the use of journalism techniques to promote a specific political or social cause.”14 By highlighting “the use of journalism techniques” and considering Wyatt and Badger’s focus on “persuasion,”15 it could be argued advocacy journalism is present when “journalism techniques” are used to influence public policy, raise community awareness and/or advance a particular position. Advocacy journalism relies on openness, transparency and declaration of position and, by definition, it contrasts with the oft-stated aspiration of journalistic objectivity. It wears subjectivity as a badge of honor, but does so scaffolded by dual positions of “gatekeeper”16 and member of the Fourth Estate. It could be argued that advocacy journalism stands strongest in the Fourth Estate in its goal to “act on behalf of the people and report on and give voice to those in political, corporate, economic and social power.”17 Canadian journalist Sue Careless contends advocacy journalism “openly speaks for or pleads on behalf of another, giving the other a face and a voice.”18 It is the capacity of advocacy journalism to give voice to “the other” that makes it a powerful companion to disability in the media. Advocacy journalism, in a disability context, has struggled to gain a foothold in the mainstream media. While there are journalists who have worked on the “disability beat” or covered disability in their stories, they mostly are reticent to describe themselves as advocacy journalists and instead present as journalists who cover stories about disability when there is “relevance.”19 There are, however, examples of opinion columns in the mainstream media dedicated to disability issues. Journalist Helen Henderson worked for the Toronto Star for almost four decades. She was a section editor and disabilities columnist. Henderson was diagnosed with multiple sclerosis in the 1970s and over the years used a cane and a wheelchair. She was a staunch advocate for people with disability in her column and her life. In one of her last columns for the Toronto Star, Henderson reflected on the case of 12-year-old Tracy Latimer, killed by her father Robert Latimer in Canada in 1993. Tracy had quadriplegic cerebral palsy, and Robert Latimer claimed it was a “mercy killing.” He was found guilty of second-degree murder, but almost avoided a mandatory jail sentence of 25 years when Justice Ted Noble granted a constitutional exemption and declared it “compassionate homicide.”20 The ruling was subsequently overturned on appeal and he was sentenced to a minimum of 25 years, with no chance of parole before 10 years. Helen Henderson tackled the issue of “mercy killing,” “euthanasia” and the value put on lives of people with disability in her column published on the eve of Robert Latimer being released on day parole in March 2008: I have no doubt Robert Latimer loved his daughter. I have no doubt that, like the parents of any severely disabled child, he sometimes felt very alone. I also have no doubt that Tracy Latimer is a victim twice over—once of murder and once of the injustice served by a society that can’t see beyond the surface of disabilities and won’t invest the resources that families need to nourish children who don’t communicate or move or process information like the majority.21 Jones22 interviewed Henderson as part of her work exploring the backstories of five journalists writing about disability in Toronto. The five journalists, who all identified as having disability,

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did not see disability as a dominant factor in their work, Henderson included, and assessed newsworthiness of stories that featured disability in the same way as another story. While Henderson produced a weekly column dedicated to disability, she remained committed to the use of journalistic technique: “A publishable story must make a difference and be able to ‘stop people in their tracks.’”23 While advocacy journalism about disability has struggled to find a place within the mainstream media, it has a track record in niche, community and service-provider publications. The Disability Rag was published in print in the United States for 16 years from 1980 and became the Ragged Edge online in 1997;24 ABILITY Magazine in the United States says it provides “new insights into our individual levels of ability.”25 Nationally distributed Link Magazine in Australia features “opinions and perspectives directly from people with disability.”26 Abilities, published by the Canadian Abilities Foundation, claims to offer “inspiration, information and opportunity for all Canadians with disabilities.”27 While these publications have niche audiences, impact is potentially limited. It could be argued, in many cases, publications of this kind are preaching to the converted. Likewise, the advocacy of long-standing disability-focused blogs, like Bad Cripple28 from US anthropology instructor and disability activist William Peace, provide powerful insight into disability and the multiplicity of issues faced by people with disability but, it could be argued, it is only when these issues and examples of advocacy journalism are ventilated in mainstream media that the “other” is truly given “a face and a voice.”29 Advocacy journalism, like all journalism, relies on audience and funding. Without an audience, there is no consumption and redistribution of content, and without funding there is no capacity to produce content for distribution, consumption and potential redistribution. The road to sustainable journalism publications in the digital age is littered with the remains of mastheads that believed there was an audience prepared to pay for content. Disability and advocacy journalism face the same dilemma. This chapter will now explore two cases where disability and advocacy journalism have been showcased in the mainstream, and, in doing so, the media have given more voice to the disability community. Ramp Up and Ouch identify as online publications (and podcasts in the case of Ouch) about disability, for people with disability and by people with disability. As discussed earlier, advocacy journalism is about “the use of journalism techniques to promote a specific political or social cause.”30 Ouch and Ramp Up are examples of “self-advocacy” journalism—journalism about disability by people with disability. Significantly, the issue of long-term sustainability is present in the case studies. In Australia, Ramp Up, despite being part of a federally funded broadcaster, could not be financially sustained and, in the United Kingdom, Ouch—also part of a publicly funded broadcaster—was pared back and had significant elements incorporated into the general news operations, as a kind of disability beat space on the BBC website.31 The Ouch and Ramp Up experiences provide insight into innovative practices in a disability and advocacy journalism context and, importantly, provide people with disability a conduit through which their perspectives can be heard and their stories told to a much wider consumer base. However, the online publications’ sustainability issues serve to underline broader media realities facing those who would seek to expand public discourse around disability beyond the niche audience.

Background BBC Ouch is a well-established online entity, and ABC’s Ramp Up was a comparatively shortlived Australian-based disability site. As discussed, both publications are embedded within the digital platforms of their respective publicly funded national broadcaster. It is important to acknowledge both operate or, in Ramp Up’s case, operated, in the public space—funded by the public purse. The BBC and ABC are governed by charters that include commitments to serve the needs of all audiences, and both have editorial policies that address how disability and 358

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diversity should be covered—most specifically in regard to stereotypes and discrimination. Impartiality and diversity of perspectives are also addressed. The ABC aims to present, over time, content that addresses a broad range of subjects from a diversity of perspectives reflecting a diversity of experiences, presented in a diversity of ways from a diversity of sources, including content created by ABC staff, generated by audiences and commissioned or acquired from external content-makers. Impartiality does not require that every perspective receives equal time, nor that every facet of every argument is presented.32 Despite the public funding, both ABC and the BBC are independent statutory bodies that operate editorially at arms-length from government.

Ouch33 In 2002, the BBC did something that was impressive in purpose and positive in its delivery—it established Ouch Blog. Ouch provided disabled people the opportunity of self-representation and opened a portal for disability-focused advocacy journalism. In doing so, disability in the media was moved into the mainstream, albeit through a disability-dedicated page on the BBC site. Ouch broke new ground by being an online location for people with disability to produce and publish journalism and opinion pieces about disability issues. Among the written and pictorial contributions, it became the home of the Ouch Disability Talk Show, and provided a firstperson perspective of disability. Ouch says it “goes beyond the headlines of disability news, and also lifts the lid on the little details about being disabled that are not widely talked about.”34 The aspiration of the advocacy journalism and impact of self-representation was observed by Thoreau: “It produces a disability-centred, experience-based, active, and positive picture of disabled people.”35 BBC Ouch provided broad coverage of stories about disability that would otherwise remain the domain of niche publications within the disability sector or blogosphere. It is a portal for a variety of opinions and styles. A notable entry on the blog’s message board in its early days focused on the impact of two characters in the comedy series Little Britain, Lou and Andy. Andy used a wheelchair and Lou was his “carer.” The Ouch post reported the characters were being blamed for the increase in wheelchair thefts from hospitals: “People parody the Andy and Lou sketch and send pictures of themselves dressed up.”36 In a more traditional journalistic report from 2012, Emma Tracey explored the development of “talking” cash machines, observing: “Accessibility of machines, or lack of, has a significant impact on how blind and visually impaired people get their money.”37 The Ouch Talk Show podcast was launched in 2006, and is the mainstay of the site. It is now serves as the primary source of much Ouch content. With a variety of hosts over the years, it has addressed issues ranging from sex and relationships—the 100th episode broadcast in September 2013 asked: “How does a young man go about losing his virginity when his arms and legs don’t work?”—to Pokémon Go and access for disabled gamers.38 In 2010, there were concerns the BBC would close Ouch as part of “major changes” to BBC Online.39 At the time of the review, Ouch was one of 400 “top-level directories” to be reviewed and held to account against three key questions: “does it meet our public purpose; does it fit one of the BBC’s five editorial priorities; how does it perform in terms of reach, quality, impact and value for money?”40 At the time, BBC director general Mark Thompson declared the broadcaster was “putting quality first” and its “five clear priorities” would be:

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The best journalism; inspiring knowledge, music and culture; ambitious UK drama and comedy; outstanding children’s content; and events that bring communities and the nation together. We will focus on the areas which most clearly build public value and which are most at risk of being ignored or under-invested in by commercial players.41 In the context of the longevity of Ouch, Thompson’s reference to areas that are at “most risk of being ignored or under-invested in by commercial players” is notable. With this statement, he was drawing a line between the priorities of the taxpayer-funded BBC and those of its commercial contemporaries. Thompson, it could be argued, was committing to prioritize areas like disability, one that is at “risk of being ignored” in the media landscape. As it turned out, the BBC did not close Ouch, but it did shut down its popular “message boards” in 2011,42 and archived ten years of blog material (which is still accessible). Much focus then turned to the Ouch Blog, only for it to be phased out and content moved to the BBC Ouch programmes page in March 2016. The loss of the message boards caused most angst. It was seen by its users as a mechanism for direct participation—an open and accessible means of raising and discussing disability-related issues. The message boards element of the Ouch Blog was broken into sections—Ouch Talk, Disability Q&A, Ouch Café and See Hear Talk. Each board had a particular focus, and at the time of archiving, boasted almost half a million “replies.” The Ouch Talk message board had 299,168 replies alone over almost a decade.43 In 2005, Macias, Lewis and Smith explored healthrelated message boards and chat rooms on the web. While the paper had a medical context, its observations could help explain the apparent popularity of the Ouch message boards. Although these boards have a strong emotional and support component, they are being used more often for advice and information, particularly for medical and drug information … These boards are being utilized as a word-of-mouth communication device that was never available before. Before the Internet, it would have been difficult for people to form such an extensive support group because of geographic barriers as well as the embarrassment of talking about certain illnesses (e.g., infertility, IBS, etc.). The anonymity of the Internet appears to be providing an important forum.44 It could be argued, the decision to abandon the message boards appeared to be a sign of the digital media times more than an attempt to silence voices. As Virginia Heffernan observed in the New York Times: “Message boards were key components of Web 1.0—the Web before broadband, online video, social networking, advanced traffic analysis and the drive to monetize transformed it.”45 The Ouch Blog, which has been archived, can be traced back to its earliest contributions in 2002,46 and there is social media operating under the Ouch banner, including a Facebook page, Twitter handle and Instagram account. However, a search for BBC Ouch and BBC Ouch in Facebook groups yielded no results. This is interesting, as it either indicates there is a replacement for the Ouch message boards operating under a different title, or there has been no official replacement for the message boards established. There are multiple posts on the Ouch Facebook page (which has more than 21,000 Likes), but nothing that seems to have filled the void of the message boards. Ouch has moved its primary focus away from written pieces. Whereas in 2013 it had a mix of content, written, video and audio (with a focus on the Disability Talk podcast), written content is now dominated by summaries of topics and interviews featured on Disability Talk rather than stand-alone items. It acknowledges as much in its auto-email replies, which include responses to frequently asked questions, one being: “What happened to the Ouch! website? Ouch! has entered 360

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a new stage of its development and is now centred around our monthly disability talk show and frequently updated blog.”47 Ouch is embedded within the broader digital platform of the BBC. Therefore, it is publicly funded (under its license fee structure)—as opposed to community funded—and is held to the same level of accountability and transparency dictated by the BBC Royal Charter and Agreement under the BBC Trust.48 Significantly, Ouch includes a list of other BBC online pages featuring and/or dedicated to disability. This is important in the context of disability-focused advocacy journalism. While the avenues for direct community contribution to the disability discussion may have been lessened through the loss of the message boards, there is arguably greater potential for journalists in the mainstream to focus on disability issues through alternate BBC digital pages, including the “Disability Sport” page49 and “See Hear” (“a magazine for the deaf community highlighting issues affecting the community”50). Ouch continues to provide a mechanism by which disability issues can be discussed and disability-focused journalism published as part of mainstream content of the national broadcaster. To this extent, Thoreau is correct in the observation that Ouch aimed to deliver a non-precious representation of disability that recorded life for people with disability in a way that bridges the gap … between the way people with disability are represented in the media and the way they want to be represented in the media.51 However the longevity, reach and, therefore, impact of disability and advocacy journalism in this context is cushioned with the still welcoming, yet somewhat more relaxed, embrace of the BBC. Questions of sustainability have clearly been asked and answered at the BBC and changes implemented. Ouch continues to exist, albeit in a pared back form. The same cannot be said for its Australian contemporary, Ramp Up. Questions of sustainability were asked and answered far more dramatically in the Australian case.

Ramp Ups And Downs Progressive representations of disability and the media in Australia are far from regular dance partners. There is the occasional dalliance but, to a large extent, the pairing is rarely observed. News publications in Australia continue to embrace traditional media models of disability,52 with stereotypical depictions of people with disability as heroes or tragedies still the unstated rule.53 However, there was a notable exception that sought to achieve change and to do as Ouch did in the United Kingdom. On International Day of People with Disability, December 2, 2010, the late journalist, comedian and disability activist Stella Young announced the arrival of the Ramp Up website in Australia. Young was co-editor of the site and declared it to be “dedicated to all things disability. It’s a place to share our stories, our truths, our resources—to ramp up the conversation about disability in Australia.”54 Ramp Up was part of the Australian Broadcasting Corporation’s (ABC) online platform, and had been seed-funded by a contract with the Australian Government’s Department of Social Services. The longer-term plan was for it to be included as an ongoing part of the ABC and for it to be funded from its overall budget. Over three and a half years, the site published more than 500 articles, with the vast majority produced by people with disability. The publication included news and opinion pieces and tackled issues that varied from the National Disability Insurance Scheme55 and fair pay and work conditions for people with disability56 to disability in film57 and even Lady Gaga’s wheelchair props: “I can’t see that performing from a wheelchair while dressed as a mermaid makes any more comment on disability than arriving at the Grammys in an egg makes on chickens,” Stella Young wrote for Ramp Up in 2011.58 361

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Through advocacy journalism and self-representative practice, Ramp Up showed people with disability as part of the fabric of Australian society, rather than objects of pity and charity and/or heroes for simply doing what everyone else does. It provided them the opportunity to move from the sidelines of critical conversations and into the centre of debate. Discussion about the murder of people with disability under the guise of mercy killings was an example of the crucial disability topics addressed. The unlawful killing of one human being at the hands of another is universally acknowledged as the worst possible crime of which we are capable. To imagine culpability as somehow eased by the victim’s disability is untenable. Murder is murder; rape is rape; violence is violence. All are a product of power wielded for its own sake—no further explanation or excuses should be allowed.59 Ramp Up’s content illustrated what the World Health Organization (WHO) and the World Bank’s World Report on Disability identified as necessary to improve social participation of people with disability: shining a light on significant disability issues. That the report found the disability community still faces “negative imagery and language, stereotypes and stigma,”60 and media initiatives like Ramp Up fit with what WHO and the World Bank said needed to happen, by “raising awareness and challenging negative attitudes” and in so doing, was taking “steps towards creating more accessible environments for persons with disabilities.”61 But that initiative fell apart in May 2014 when the Australian Federal Government announced funding cuts to the ABC, saying that the Ramp Up contract would not be renewed. ABC managing director Mark Scott decided to cease publication of Ramp Up and maintain the site as an archive of previously published material. Scott described Ramp Up as “a positive,” according to New Matilda, and alluded to the large number of ABC website blogs as the potential contributory reasons behind the closure. One of the issues that we are asking from the organisation as a whole is whether we have too many standalone websites and whether, in the interests of efficiency and audience service but also the drive to bigger numbers, we need fewer websites which have richer levels of information in them.62 Ramp Up was officially shut down on June 30, 2014. Its editor, Stella Young, was retained by the ABC to continue to produce disability-related content for its multiple platforms. Young, in confirming the ABC decision to cease publication, acknowledged its accomplishments as an online publication of “self-advocacy” journalism: We’ve also had the honour of publishing great work from many talented, emerging writers with disability. We have seen a significant shift in coverage of disability issues in the media and a move towards more critical thinking within the movement. We’re proud to have been a part of that journey.63

Save ABC Ramp Up The decision not to renew the Ramp Up contract drew together a coalition of people with disability, activists and allies—this author included.64 The “Save ABC Ramp Campaign” was borne out of belief that the website’s closure would again silence people with disability. The campaign raised questions about the need for issues and/or community-specific sites within a national broadcaster’s digital footprint and, more broadly, advocacy journalism as a means of greater, fairer and more accurate representation of people with disabilities and the issues and events that are important to them. 362

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“Save ABC Ramp Up” centered on the need of people with disability to have a say in the disability agenda and their representation in the discourse. Taleporos said: “The Ramp Up site is on the national broadcaster page, and it means that we have exposure to policy makers, it can influence the way people think and understand social issues that people with disabilities face every day.”65 Freelance journalist, Ramp Up contributor and Save ABC Ramp Up campaigner El Gibbs said people with disability had lost a place to tell their stories, in their own words. Ramp Up offered a chance to examine in detail, disability policy developments. For example, I was commissioned to write a long feature reflecting on the first year of the NDIS (National Disability Insurance Scheme). I interviewed people in the trial sites, peak bodies and read reams of Senate committee transcripts, then pulled it all together. I doubt any other media outlet would have given me the space (and the cash!) to do this kind of work.66 The demise of Ramp Up showed clearly what is lost when the advocacy journalism of people with disability is silenced, and the Save Ramp Up campaign shows how deeply connected the Australian disability community felt about this silencing.

Conclusion This chapter has explored disability and advocacy journalism, which is a kind of “self-advocacy” journalism for the disability community. The activities of Ouch and Ramp Up have provided insight into the capacity that mainstream disability-focused media has to tell the stories from the disability community. This chapter also highlights the vexed position the news media find themselves in when faced with financial limitations. While there is recognition that people with disability continue to be inaccurately represented in mainstream media, the Ramp Up and, in part, the Ouch experiences, have shown efforts to improve the quantity and quality of media coverage can be diminished, if not quashed, by the withdrawal of funding and/or realignment of editorial approaches and priorities. As was shown through the exploration of the Save ABC Ramp Up campaign, there remains a belief within the Australian disability community that there needs to be dedicated space within mainstream media for the discussion of disability issues and disability-focused advocacy journalism. The inclusion of such work in mainstream media news sites will potentially broaden the audience, and counter the perception that disability is a niche issue. As Goggin and Ellis contend: “Armed with an understanding of disability in news, we can better understand, decipher, and confront stereotypes, myths and images of disability.”67 However, a conundrum exists when the call for dedicating space to disability-focused journalism, as exemplified by Ouch and Ramp Up, is weighed against the desire of people with disability to be fully included in society. Full inclusion, it could be argued, would render disability indistinguishable within the broader digital news media landscape. Disability-focused advocacy journalism would simply be a part of the greater tapestry of coverage of diverse communities by the news media. To a degree, this is the aspiration from the BBC by embedding Ouch within its general news operations. By presenting disability-focused content in a digital media environment and moving outside traditional representations of disability, Ouch and Ramp Up have taken significant steps toward imbedding better disability coverage into the major news channels in the United Kingdom and Australia, but full inclusion means disability-focused journalists must move disability away from niche news and features and into the mainstream of coverage. The digital media environment provides opportunities for disability to be discussed as readily as any other sociopolitical issue, 363

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with many perspectives coming directly from people with disability themselves (but many times with no pay for them, however68). If disability-focused advocacy journalism can claim and maintain position within the mainstream, the need for issue-specific digital space and significantly, issue-specific funding, is lessened—if not eliminated. There are examples of issues perceived as niche topics that have been taken from the rare coverage into the mainstream news. It has, for example, been argued that climate change was once relegated to infrequent science stories, whereas now it is front-page news due to its framing and representation as a crucial issue globally and locally.69 In conclusion, the imperative for disability-focused advocacy journalists is to recognize their capacity to influence, to foster change and to produce fairer and more accurate representation of disability within mainstream media. Journalists can broaden the discourse and reframe disability as part of routine news coverage, rather than a rarely covered niche issue. Ouch and Ramp Up describe themselves as places for people with disability, by people with disability, but the great leap forward will be achieved when disability is not considered out-of-the-ordinary subject matter but can claim a place within the mainstream news media conversation with progressive, rather than traditionally stigmatizing, representations. If this does happen, the protesters who gathered on that cold winter morning in Melbourne, Australia, in 2014 to save Ramp Up, may not have done so in vain.

Notes 1 “Disability Activists Join Forces To Replace ABC-Axed Ramp Up,” New Matilda, August 19, 2014, https://newmatilda.com/2014/08/19/disability-activists-join-forces-replace-abc-axed-ramp. 2 “Disabled Man Asked To Leave Melbourne ABC During Ramp Up Protest,” Australian Broadcasting Corporation, June 30, 2014, www.abc.net.au/news/2014-06-30/disabled-man-asked-to-leave-melbourne-abcafter-ramp-up-protest/5560228. 3 Shawn Burns, “Ramp Up’s Shut-Down Robs Us of a Needed Voice on Disability Issues,” The Conversation, June 30, 2014, http://theconversation.com/ramp-ups-shut-down-robs-us-of-a-needed-voice-on-disabilityissues-28602. 4 John Clogston, Disability Coverage in 16 Newspapers (Louisville, KY: Avocado Press, 1994); Beth Haller, “Disability and Mass Communication,” Spectra 45, no. 4 (April 2009): 7–11; Tom Shakespeare. “Cultural Representation of Disability: Dustbins for Disavowal?” Disability & Society 9, no. 3 (1994): 283–299. 5 Joseph Shapiro, No Pity: People with Disability Forging a New Civil Rights Movement (New York: Three Rivers Press, 1993); Otto Wahl and J. Yontatan Lefkowits, “Impact of a Television Film on Attitudes Towards Mental Illness,” American Journal of Community Psychology 17, no. 4 (1989): 521–528. 6 National Center on Disability and Journalism, Disability Language Style Guide, revised October 3, 2018, https://ncdj.org/style-guide; People with Disability Australia, “Guide to Reporting Disability,” March 6, 2017, www.pwd.org.au/library/guide-to-reporting-disability.html; International Labour Organization, Reporting on Disability: Guidelines for the Media, 2nd ed. (Geneva: ILO, 2015), www.ilo.org/wcmsp5/ groups/public/—ed_emp/—ifp_skills/documents/publication/wcms_127002.pdf. 7 Shawn Burns and Beth Haller, “The Politics of Representing Disability: Exploring News Coverage of the Americans with Disabilities Act and the National Disability Insurance Scheme,” Asia Pacific Media Educator 25, no. 2 (2015): 262–277. 8 Chelsea Temple Jones, “‘Why This Story Over a Hundred Others of the Day?’ Five Journalists’ Backstories About Writing Disability in Toronto,” Disability & Society 29, no. 8 (2014): 1206–1220. 9 Shawn Burns, “Advocacy Is Not a Dirty Word in Journalism,” Media Shift, October 16, 2014, http://media shift.org/2014/10/advocacy-is-not-a-dirty-word-in-journalism. 10 Fred J. Cook, The Muckrakers: Crusading Journalists Who Changed America (Garden City, NY: Doubleday, 1972). 11 Lauren Kessler, The Dissident Press: Alternative Journalism In American History (Beverly Hills, CA: Sage, 1984). 12 Robert Jensen, “Advocacy Journalism,” in The International Encyclopedia of Communication, ed. Wolfgang Donsbach (Hoboken, NJ: Blackwell, 2008). Blackwell Reference Online, www.communicationencyclopedia.com/ subscriber/tocnode.html?id=g9781405131995_chunk_g97814051319956_ss29-1.

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13 Kessler, The Dissident Press. 14 Jensen, “Advocacy Journalism.” 15 Robert Wyatt and David Badger, “A New Typology for Journalism and Mass Communication Writing,” Journalism Educator 48, no. 1 (1993): 3–11. 16 Kurt Lewin, “Frontiers in Group Dynamics II: Channels of Group Life: Social Planning and Action Research,” Human Relations 1 (1947): 143–153; David Manning White, “The ‘Gatekeeper’: A Case Study in the Selection of News,” in People, Society, and Mass Communication, ed. L. A. Dexter and D. M. White (New York: Free Press, 1964), 160–172. 17 Julianne Schultz, Reviving the Fourth Estate: Democracy, Accountability and the Media (Cambridge, UK: Cambridge University Press, 1998), 1. 18 Sue Careless, “Advocacy Journalism: Every News Outlet Has Its Bias. So What Is the Difference Between the Alternative and the Mainstream Press?” The Interim, May 15, 2000, www.theinterim.com/issues/societyculture/advocacy-journalism. 19 Jones, “Why This Story,” 1217. 20 “‘Compassionate Homicide’: The Law and Robert Latimer,” CBC News, December 6, 2010, www.cbc. ca/news/canada/compassionate-homicide-the-law-and-robert-latimer-1.972561. 21 Helen Henderson, “Smiling Girl Loved Music: The Tracey We Never Knew,” thestar.com, March 8, 2008, www.thestar.com/life/2008/03/08/smiling_girl_loved_music_the_tracy_we_never_knew.html. 22 Jones, “Why This Story,” 1217. 23 Jones, “Why This Story,” 1217. 24 “A Little History About This Website,” Ragged Edge Online, January 17, 2007, www.raggededgemagazine. com/departments/ragland/003044.html. 25 “Editorial,” Ability Magazine, accessed February 18, 2016, http://abilitymagazine.com/editorial.html. 26 “Link Is Australia’s Leading National Cross-Disability Magazine,” Link Disability Magazine, accessed February 18, 2016, http://linkonline.com.au/about. 27 “About Us,” Abilities, Canadian Abilities Foundation, accessed February 16, 2016, http://abilities.ca/about-us. 28 William Peace, “A New Beginning,” Bad Cripple, September 11, 2007, http://badcripple.blogspot.com.au/ 2007/09/new-beginning.html. 29 Careless, “Advocacy Journalism.” 30 Burns, “Advocacy Is Not a Dirty Word in Journalism.” 31 “Ouch: Disability Talk,” BBC, accessed February 16, 2016, www.bbc.co.uk/programmes/p02r6yqw/episodes/ downloads. 32 “ABC Editorial Policies,” Australian Broadcasting Corporation, accessed February 16, 2016, https://edpols. abc.net.au/policies/. 33 The exclamation mark was originally part of Ouch’s logo image (Ouch!) but is no longer attached to the word. It appears to have been dropped around 2014. 34 “Ouch: Disability Talk.” 35 Estelle Thoreau, “Ouch!: An Examination of the Self-Representation of Disabled People on the Internet,” Journal of Computer Mediated Communication 11, no. 2 (2006): 442–468. 36 “Guard Your Wheelchair From Heartless Comedy Thieves,” BBC Ouch, April 16, 2004, www.bbc.co.uk/ blogs/ouch/2004/04/guard_your_wheelchair_from_hea.html. 37 Emma Tracey, “Accessible Cash Machines, Soon Money Will Talk,” BBC Ouch, May 29, 2012, www. bbc.co.uk/blogs/ouch/2012/05/accessible_cash_machines_soon.html. 38 “Access all Pokemon,” Ouch: Disability Talk, July 15, 2016, www.bbc.co.uk/programmes/p041kl0p. 39 Mark Thompson, “Putting Quality First,” About BBC Blog, March 2, 2010, www.bbc.co.uk/blogs/about thebbc/2010/03/putting-quality-first.shtml. 40 Thompson, “Putting Quality First.” 41 Thompson, “Putting Quality First.” 42 Damon Rose, “Messageboard Closure,” BBC Ouch, June 10, 2011, www.bbc.co.uk/blogs/ouch/2011/06/ messageboard_closure.html. 43 “Discuss Disability Life Matters Big and Small in Our Debating Zone,” BBC Ouch, accessed July 16, 2016, www.bbc.co.uk/ouch/messageboards; “The BBC Is Closing Their Disability Forum,” Able Here, June, 2011, www.ablehere.com/forum/12-news/36111-the-bbc-is-closing-their-disability-forum.html. 44 Wendy Macias, Liza Stavchansky Lewis and Tenikka L. Smith, “Health-Related Message Boards/Chat Rooms on the Web: Discussion Content and Implications for Pharmaceutical Sponsorships,” Journal of Health Communication 10, no. 3 (2005): 221. 45 Virginia Heffernan, “The Old Internet Neighborhoods,” New York Times, July 10, 2011, http://opinionator. blogs.nytimes.com/2011/07/10/remembrance-of-message-boards-past/?_r=0.

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Shawn Burns 46 Damon Rose, “Goodbye—Ouch Is On The Move,” BBC Ouch, April 18, 2013, www.bbc.co.uk/blogs/ ouch. 47 British Broadcasting Corporation, BBC Ouch, personal correspondence, July 18, 2016. 48 British Broadcasting Corporation, Charter of Agreement, January 1, 2017, accessed March 4, 2017, www.bbc. co.uk/bbctrust/governance/regulatory_framework/charter_agreement.html. 49 Disability Sport, BBC Sport, accessed March 4, 2017, www.bbc.com/sport/disability-sport. 50 Two See Hear, BBC, accessed March 4, 2017, www.bbc.co.uk/programmes/b006m9cb. 51 Thoreau, “Ouch.” 52 John S. Clogston, “A Theoretical Framework for Studying Media Portrayal of Persons with Sisabilities” (paper presented at the Annual Meeting of the Association for the Education in Journalism and Mass Communication, Washington, DC, August, 1989). 53 Burns and Haller, “The Politics of Representing Disability.” 54 Stella Young, “Welcome to Ramp Up,” Ramp Up, December 2, 2010, www.abc.net.au/rampup/articles/ 2010/12/02/3082514.htm. 55 Stella Young, “The NDIS Should Be Referred to as an Investment, Not a Cost,” Ramp Up, December 18, 2013, www.abc.net.au/rampup/articles/2013/12/18/3914111.htm. 56 Carly Findlay, “Don’t Expect Me to Work For Free,” Ramp Up, October 6, 2014, www.abc.net.au/ rampup/articles/2014/06/10/4022534.htm. 57 Louise Pascale, “Disability and the Big Screen,” Ramp Up, September 5, 2014, www.abc.net.au/rampup/ articles/2014/05/09/3999923.htm. 58 Stella Young, “Going Gaga Over Wheels,” Ramp Up, July 15, 2011, www.abc.net.au/rampup/articles/ 2011/07/15/3270307.htm. 59 Craig Wallace and Samantha Connor, “Getting Away with Murder,” Ramp Up, June 18, 2014, www.abc. net.au/rampup/articles/2014/06/18/4027063.htm. 60 World Health Organization (WHO), World Report on Disability (Geneva: WHO and World Bank, 2011), 6, www.who.int/disabilities/world_report/2011/en. 61 WHO, World Report on Disability. 62 “Who Really Wound Down Ramp Up?” New Matilda, July 2, 2014, https://newmatilda.com/2014/07/ 02/who-really-wound-down-ramp. 63 Stella Young and Karen Palenzuela, “A Message From the Ramp Up Team,” Ramp Up, June 5, 2014, www.abc.net.au/rampup/articles/2014/06/05/4019585.htm. 64 Shawn Burns, “Save ABC Ramp Up,” Disability & Media Matters, June 23, 2014, http://disabilitymediamatters. me/2014/06/23/save-abc-ramp-up/. 65 Burns, “Save ABC Ramp Up.” 66 El Gibbs, personal communication, November 26, 2015. 67 Katie Ellis and Gerard Goggin, Disability and the Media (New York: Palgrave Macmillan, 2015), 57–58. 68 Findlay, “Don’t Expect Me to Work For Free.” 69 Matthew Nisbet, “Communicating Climate Change: Why Frames Matter for Public Engagement,” Environment Magazine 51, no. 2 (2009): 12–23.

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33 REPRESENTING DIFFERENCE Disability, Digital Storytelling and Public Pedagogy Carla Rice and Eliza Chandler

Of historical representations of disabled people, disability studies scholar Rosemarie GarlandThomson remarks, “[t]he history of disabled people in the Western world is in part the history of being on display, of being visually conspicuous while politically and socially erased.”1 The representational history of disabled people can be largely characterized as one of being put on display or hidden away. People living with disabilities have been, and continue to be, displayed in freak shows, medical journals, charity campaigns and as evil or pitiable tropes in novels and films.2 At the same time, bodies of difference have been hidden in institutions and generally removed from public space. When looking at the contemporary representation of disability in the media, we can easily see that the problem is not that disabled bodies are absent; representations of disability are pervasive. The problem, rather, is the way that bodies of difference are represented. If we consider such representations as contributing to a public pedagogy that helps to shape our collective understanding of disability, then putting forth representations of disability created by disabled people is a matter of political importance.3 This chapter will draw upon representations of disability created by disabled people and people with embodied differences as well as audience reactions to them in order to analyze the emancipatory potential of representations as “public pedagogies.”4 By “public pedagogy,” we follow Giroux to theorize the effects of pedagogy beyond the realm of schooling and refer to how symbolic and institutional forms of culture and power are mutually entangled in constructing diverse identities, modes of political agency, and the social world itself … [This allows us to] assess the political significance of understanding the broader educational force of culture in the new age of media technology, multimedia, and computerbased information and communication networks.5 We also follow up on Bourdieu’s desire for scholars to engage the public by enter[ing] into sustained and vigorous exchange with the outside world (especially with unions, grassroots organizations, and issue-oriented activist groups) instead of being content with waging the “political” battles, at once intimate and ultimate, and always a bit unreal, of the scholastic universe.6

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We attend to Giroux’s and Bourdieu’s urges to bring our critical analysis into the public realm and find this of particular value to our field because we recognize the cyclical relationship between how disability is represented, how these representations inform public understandings and how such understandings inform the ways that the public treats disabled people. If, for example, disability is represented as “a problem in need of a solution,”7 as it so often is in the media, then this infuses a public pedagogy that teaches the public to treat disabled people as living lives that are not worth living. This, in turn, affects how we, as disabled people, experience the social world. When disability is represented differently in media, as it is in the digital stories created by disabled people taken up in this chapter, this leads to the generation of a new public pedagogy of disability, which, in turn, affects how we, disabled and non-normatively embodied people, are treated. For the cyclical relationship between representation, public pedagogy and the treatment of disabled people, we attend to media representations of disability as a matter of political importance, one that is integral to disability rights and justice.

Why Media Matters One only needs to turn their attention to the proliferation of disability tropes throughout media culture8 to recognize that the ways that disability and mind/body difference are represented follow a few main tropes—pitiable, child-like, dangerous and criminal, to offer some examples— which are reflective of normative culture’s understandings of and expectations for us. When disabled bodies appear in normative culture, they also appear as out-of-the-ordinary, as abnormal. Out-of-the-ordinary bodies require explanations for why they are different; “what happened to you?” is a question asked of many disabled people. When any bodies appear to us, they do not first appear as disabled, then as gendered and then as racialized.9 Bodies appear as all of these things together. So, when we see a dragging foot, for example, we do not see that foot purely and simply as a foot out-of-order. We see that foot attached to a body—a raced, gendered, classed and aged body—and we see that body in a particular space and time. So, when we ask the inevitable question, “why is that foot dragging?” we make sense of this foot in the context of the body it is attached to. If this foot is attached to a fit-looking athlete, dressed in sports gear near an athletic center on a college campus, we might read the body it’s attached to within its immediate context and come up with “sports injury” as a way to explain that foot. But attached to other bodies, a dragging foot may be explained for through a different story … because disability is clarified differently in different bodies. Following Puar,10 we might think of these permutations of identifications/differences as assemblages that inhere in bodies in indivisible yet unstable ways. Approaching these intersections-as-assemblage enables us to theorize how the meanings and materialities of bodies shift in time and place even as they cannot be disaggregated or broken into discrete identity parts.11 When disability is understood as assemblage, analyzing representations becomes complicated. Consider this example: Humans of New York12 is a popular blog and Facebook page featuring street photography of people around the world by photographer Brandon Stanton. A typical blog post features a photograph framed by a quotation or a bit of the subject’s story. Underneath each post are thousands of comments about the photographs and stores by the blog’s audience members. We might consider this blog, affectionately known as HONY, as one of the most widely acclaimed digital archives of embodied differences; many disabled people and people with embodied differences appear on this blog. On September 22, 2013, the blog featured a photograph of a black wheel-chair-using man sitting in a park wearing a white hoodie, black pants and socked feet.13 The man is looking at the camera with a half-smile and his quotation under the photograph reads, “It went through my ribcage and stopped at my spine.”14

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There were thousands of comments beside this image and paying attention to these comments helps us think about the relationship between how disability is represented and how it is understood. When we see a body of difference, we may be tempted to seek an explanation for how this body became different, signaling that this is a body that appears to us as “out of the ordinary.” In order to generate this explanation, we draw upon multiple identity markers. In these moments of sense-making, disability becomes clarified—made sense of—through race, gender, class, geography, age, as well as any other markers of identity/context. Through our interpretation of these configurations of difference, we also participate in making the materialities of the subject presented before us.15 To think through how the difference of the man in this photograph was understood, we turn to comments under his photograph. To recite a few: “Another reason for why I am for gun control”; “Wonder why he was shot … sometimes there’s a reason you end up on the wrong side of the barrel”; and “I’m so so sorry. So much gun violence. Black men need jobs, somehow, somewhere. Got to be a way, would help reduce gun violence.” And finally, Too many assuming gun violence where this man was the “bad guy.” He coulda been a cop, security guard, vet. Coulda been a bullet, bayonet, shrapnel or freak construction accident. I’m glad we get to see an image of him, and he gets to speak briefly. These comments beg for an origin story as observations of disability often do. This man requires an explanation for why he is using a wheelchair, for this is not considered to be a normal state of affairs. Most of the speculative comments underneath this photograph reveal a sense-making of this man’s positioning cobbled together through intersections of racist and ableist assumptions; the comments do not speculate that this man was born with spina bifida, as they might if he were white. Instead, the speculations emerging within this exchange mobilize the racist trope of the “violent and dangerous black man” whose race, class and disability work together to frame him, like other poor disabled black men living in urban America, as a potential or actual criminal, a guilty non-victim of gun violence. This representation of a black, disabled man on the HONY website reveals that not all disabled people, or even all people using a similar mobility device, are interpolated and subsequently culturally understood and treated in similar ways. Representation, therefore, is political. Compare the reactions to the above photograph to the comments attached to a photograph of a white, similarly aged wheelchair user posted on December 25, 2014.16 This man is using a power-scooter, smiling and wearing a red holiday hat, and is on a subway platform. The quotation that accompanies this photograph reads, My mother and I lost our apartment when the landlord raised the rent. She went to live in my aunt’s attic in New Jersey, but there were too many stairs there, so I had to go to the homeless shelter. Most of the people at the shelter have addiction problems and mental issues. I’m living with people that I never thought I’d have to live with. The M35 is the only bus that goes to the shelter. Disabled people are supposed to get on first. But as soon as it gets to the stop, everyone rushes in until it’s full, and the bus driver is too intimidated to say anything. A lot of times it leaves without me.17 The comments under this photograph include: Get your mom and come to my house. Free rent! Still smiling.

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My sister and I walked by this beautiful soul in the subway station a few weeks ago. He was singing Christmas carols for passersby. We were in a hurry, but his singing voice was so amazing it stopped us right in our tracks. My sister and I turned around in the station so she could go get cash to put money in his paper bag. We talked about how beautiful his voice was for days after. Words don’t do justice. Stanton remarks that he tried to start a fundraising campaign for this man but he refused.18 These comments recall the familiar trope of the poor white disabled man as innocent victim, who courageously and optimistically presses on despite his unfortunate fall from conditions of respectability. Here we have two images of wheelchair-using men of similar ages in public spaces in New York City, one black and one white. The differences in the comments reveal that how disability is represented, understood and experienced is not the same from one person to the next. Here race clarifies disability.19 While one disabled man is understood as having a history of violence and potentially gang involvement, the other is read as “still smiling” and help is offered up in abundance. These representations reveal the significance of frame and make meaning of images of difference. They further show how the meanings made by followers might affect the material chances of both men: moralizing judgments reinforce one man’s unworthiness and vice, and inscribe his disability as penance; and empathic responses to the other mark him as essentially good (if unlucky), and hence, as redeemable despite the misfortune of disability. These street photographs were not directed by the disabled people they feature; instead they are framed by a decontextualized quote. And although they are profound within their own genre of street photography, the comments below these photographs demonstrate the stereotypes of difference that they mobilize: clarified by blackness, disability as assemblage is understood as a violent body to be feared, isolated and punished; clarified by whiteness, disability as assemblage is understood as a helpless body to be pitied, cared for and recuperated. To look at how disability is framed differently—agentively—in media representations created by disabled people born from a disability politic, we turn to the power of “disability art.”20 In this analysis, we pay particular attention to how disability arts give rise to new cultural and intersectional understandings of embodied difference. Taking heed of the forceful claim of the disability rights movement that disability rights are human rights, the disability arts and culture movement claims that “full and effective participation in society”21 requires more than barrier-free access to public space and buildings; we must also have full access and meaningful participation in arts and culture, both as producers and creators as well as audience members and participants. The disability arts and culture movement makes the representation of disabled people a political issue for how it asserts that in order for disabled people to be truly liberated, we must change the way society sees us.22 This is the work of the artist. In a culture that tells us in insidious and explicit ways that disabled people’s access to life and to futurity is debatable,23 how disability and disabled people are represented is hotly political. We argue that the power of disability arts, of which we consider the multimedia/digital stories discussed below to be a part, is twofold: disability produced by disabled and D/deaf people about the experience of disability and deafness creates new and multiplicitous representations of disability that challenge stereotypic understandings; and at the same time, the making of art by disabled people disrupts public pedagogies, which hold that disabled people are “problems in need of solution.”

The Re•Vision Centre for Art and Social Justice The Re•Vision Centre, located at the University of Guelph in Ontario, Canada, was established through funding from the Canada Research Chair Program, the Canadian Institutes for Health Research, the Social Sciences and Humanities Research Council of Canada and the Canadian 370

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Foundation for Innovation, in which we use arts-based research methods to dismantle stereotypical understandings of disability and difference that may create barriers to health care, education and other sectors in society.24 The mission of Re•Vision’s mobile multi-media lab is to explore ways that communities can use arts-informed research to advance social inclusion and justice.25 In broad strokes, we look at the values, power and efficacy of the arts to positively influence practitioners and decision makers in various sectors. To date, we have generated over 600 multimedia/digital stories. With respect to disability-justice work, we have held 20 storytelling workshops, led by disability-identified artists, in which people living with disability and embodied difference and health care providers (or educators, depending on the research project) create three- to four-minute videos aimed at changing how disability is understood and responded to in systems. In addition, the Re•Vision Centre has created a nine-woman theater production, written and co-devised by the actors themselves, which has been performed in a variety of health care and educational settings in Ontario. Rice founded the Re•Vision Centre with the intention of improving health care for disabled women and trans people, who have historically and routinely been subjected to some of the worst quality of health care. For example, many disabled women and trans people report experiencing systemic “invalidation” in health care systems, where providers take over decisions, discount, objectify and inflict unnecessary pain on people during encounters, ignoring and violating individuals’ “decision-making ability, knowledge about their bodies, humanity, and their right to remain free from harm.”26 Rice knew that stereotypic understandings of disability were one of the main causes of substandard health care; for example, the assumption that disabled people are asexual contributes to the inadequate sexual and reproductive health care that disabled women and trans people receive (or do not receive). This example shows how dominant pedagogies of disability affect how disabled people are treated and, thus, how disability rights and justice— access to health care—are enacted. There are many ways of correcting these misunderstandings in health care (and education) to create more effective services. One way, as identified by Rice and enacted in Re•Vision, is to have disabled women and trans people create representations—digital/multimedia stories—of their embodied experiences and then create curriculum centered on these stories to deliver to health care providers, educators and students. It is noteworthy that although originally Re•Vision was originally intended as a project that would mobilize arts-informed research to transform health care encounters, its multimedia storytelling, theater and other art-making workshops have come to fill a key gap in Ontario’s disability arts and culture movement as we have provided free, accessible arts training led by disability artists for disability artists.27 In these workshops, we follow the main principles of the disability arts and culture movement described above and approach the work generated as art rather than as strictly research outputs or knowledge mobilization tools. In these ways, Re•Vision has contributed to creating the conditions for developing a disability arts community and advancing a disability arts aesthetics.28 We have discussed how media representations of disability and difference, when generated by non-disabled people, risk producing flattened, un-nuanced understandings of disability that draw upon, and thus perpetuate, stereotypes. We now turn our attention to representations of disability created by disabled people that produce rich, nuanced and intersectional understandings of embodied difference by featuring and analyzing two digital/multimedia stories produced in Re•Vision workshops. We suggest that these and other Re•Vision funded art projects have contributed substantively to disability arts, which has become a fast-developing area of research as well as of practice and activism in the Anglo-Western world. The first film we explore, Reading Blind,29 created by disability-identified doctoral history student Sheyfali Saujani, opens with the words “the worst thing about being partially blind, is not being able to read anything I want, any time, anywhere,” simultaneously spoken by an electronic 371

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male voice and projected in text across a computer screen reader. In this moment, we, the audience, are initiated to “reading blind.” Soon, we are introduced to a childhood image of the filmmaker, announcing that she has always loved to read: “I ate books the way a greedy child devours candy.” Shifting to the present, we observe Saujani, wearing thick magnifying glasses, nose literally pressed into a book. She reveals, “for years I refused to accept my blindness; I kept trying to read the way I used to … but then my body rebelled.” She confides, “I couldn’t accept my disability when I thought it meant I couldn’t read.” But, then, turning to the use of electronic and audio books, we encounter images of a bedside, a table set for a meal, food simmering on a stove, unwashed dishes in the sink, Saujani sitting in a garden and riding and waiting for the streetcar. In each location, her voice-over tells us, she reads. “I like to read anytime, anywhere.” Pausing she adds with emphasis: “but I can’t read anything and everything.” Leading us through the expansive collection of the stacks of the University of Toronto Library, Saujani attempts to read, unsuccessfully, items from the collection through highly magnified glasses. She tells us that hundreds of millions of things don’t exist in accessible formats. She offers that now that technologies remove some of the barriers to print, it is possible for her to identify as blind. In the closing frames of the video, Saujani recounts a question she is often asked, “If there was a treatment for your disability would you fix it?” Staring straight at the camera with a broad defiant grin on her face Saujani answers: “I have a question for you: if you could remove barriers to access would you?” (Saujani’s emphasis) mobilizing a new public pedagogy about where the problem of disablement lies. Told in the present, while referencing a personal and political past, Saujani’s video invites a future whereby the embodied, shifting, impermanent experience of sight is decoupled from the act/cessibility and forms of reading. Her story reminds us of the temporality of the experience of embodied difference—that the nature of many impairments shift over time. However, literally and figuratively directing her gaze outward, Saujani provokes all of us to imagine accessibility as a collective desire rather than an individual accommodation. From this perspective, Saujani opens up to us about how, for her, accessibility and disability identity are intertwined. The second video, Shift,30 was created by artist, academic and co-author of this chapter, Eliza Chandler. In this narrative, Chandler describes the shifting temporalities she has experienced throughout her art practices, which correspond with her shifting in and out of identification with and in her disabled embodiment, though her impairment is always with her and easily read— through sight, sound and touch—on her body. As the film shows footage of Chandler, who is noticeably physically disabled, moving around a gallery, running, tripping up stairs, trying to untangle tangled string, attempting to roll film onto a spool layered on top of images of her weavings, sculptures and installations, it reveals the intimate contradiction that came with Chandler’s desire to hide her disability, which not only came through her embodied experience of making art, but in the art itself. In a sense, Chandler’s disabled embodiment led her into a cripped art practice, resulting in what might be categorized as a “crip aesthetic,” that is, art whose form was created by, and thus engenders, the difference that disability makes. At the close of the video, we see Chandler boldly appear in her performance art as she “finally decides to center her disability proudly.” In this clip, Chandler, dressed in a dress, a fur hat and high-heeled shoes, parades down a busy urban street. We see pedestrians (strangers to Chandler) asking her to stop and pose so that they can take photos of her. Here her disability does not give way to normalcy, rather it gives rise to a “soft rub,” to a final intimate contradiction that viewers of this video might also share. This is the rub that comes from the embodied stirrings that may surface from noticing an unapologetic difference in form. This unapologetic difference calls attention to the vulnerabilities and strengths that emerge from having intimate embodied experiences of being put on display. In multiple and pervasive ways, the lives of disabled people are socially represented as lives “not worth living.” Because the meaning made of disability is always connected to how we experience 372

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it, these renderings contribute to the way that we experience everyday life within a geography where the possibility of being ambushed by and through ableist encounters is likely. So it may be tempting, even understood as necessary to our survival, for disabled people to represent our lives as unwaveringly painless, enjoyable, productive and desirable—even when this is not how we experience our disabled lives.31 Representing disabled lives as anything other than unwaveringly prideful in a world in which disability is so pervasively represented as a life not worth living, a life that in so many ways is prevented from being lived, may be too risky. However, in her story, Chandler engages this risk and delivers a nuanced representation, which may lead to a nuanced understanding of disability. This is not a straightforward “overcoming” story in which Chandler’s shame for her disability is replaced by pride. As she says at the end of her video, “when [she] finally decided to center [her] disability [in her art] proudly, a very soft rub came.” The “rub” of continuing to possess a wavering relationship with her body, experiencing it, at times, as the source of social discomfort and alienation while also inhabiting her body with deep pride. Such a representation could only by authored by someone with embodied experience. Different than the understanding released by the photographs of disabled people on the HONY website, Saujani and Chandler’s stories release a complex representation of disability into the world and the public pedagogy of disability that they contribute to create new understandings.

Audience Reactions As we reflect back on our research project, it is clear that we accomplished what we set out to achieve; these multimedia/digital stories enact a public pedagogy of disability rooted in the alterity of disability community, arts and culture. Whenever we present this work to health care providers (and others), some, if not all, members of the audience are stirred by the stories. To date, we have screened these stories to health care provider and/or trainee audiences in over 20 hospitals, community health centers and universities across Northern and Southern Ontario (as well as in film festivals and other arts events for non-health care provider audiences). In some cases, we invite audience members to participate in post-screening interviews regarding their reflections on the stories and impacts on their practice moving forward. Through surveys and interviews, audience members report that, in viewing this work, they arrive at different understandings of disability and embodied difference. This includes increased awareness of their prior assumptions and biases and, for many, a profound shift in their understanding of bodies of difference and in their intentions to undertake their practice differently. Audience responses highlight the struggles of those in the so-called helping professions to articulate precisely how their perceptions shift so profoundly. Using language such as “moved,” “silenced,” unsettled,” “confused,” “vulnerable,” “responsible,” “defensive” and “hopeful,” many speak of being unable to put their changing perceptions and learnings into words. Perhaps they can’t put into words what is happening emotionally and intellectually because the effects, in part, are pre-discursive—that is, before or outside of language (such as affective, energetic and nonverbal communication between them as audience members and the bodies they witness on the screen). Some health care provider responders describe how through empathy for the other and interrogation of the self that the films provoke, they begin to reach a deeper understanding of themselves in relation in a way that does not assimilate the other into the self (which collapses differences) but rather opens possibilities for engagement with others who can only ever be partially known. For these audience members, learning from the videos occurs in the discovery of shared humanness and of real material differences. One audience member describes this discovery of difference as “a peek beneath the surface that’s exciting as there’s always something new.” Another writes: “I was deeply touched, made more aware, humbled, and more. I felt a tremendous sense of connection combined with a greater respect for both our similarities and differences.” 373

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For many audience members, the distillation and densification of experience that this genre asks of filmmakers emerges as particularly powerful.32 As one attendee notes: “Most meaningful was the strength of the self-narratives of the people involved, the moving and powerful nature of these truth-tellings through such artistic means and concise approaches.” In our accelerated, truncated and neo-liberalized world where many people are time-starved, this genre may enable an economy of expression through layering meanings via narrative, image and sound, resulting in an art form that can create/convey depth within a highly compressed timeframe. Another writes: “The films didn’t necessarily seem to be about disability but let you see/feel/experience disability from a particular point of view. The artists presented complex views of disability.” These audience members speak of the ways that the films enable them to begin to know disability in non-medical ways and, sometimes, to acknowledge their own vulnerabilities and embodied differences. For instance, some attendees respond with comments such as “I wonder what masks everyone is wearing to hide themselves”; “This opened my eyes to new perspectives about difference”; “These show a world of experiences outside of my own”; and “They remind me that we all have vulnerability and moments of need.” Another attendee remarks: “I learned that ‘disabled’ people can be tremendously intelligent, articulate, funny people. I am embarrassed to admit I learned that.” Writes another: The stories did something that represented disability in such a way that it was more than correct information, more than correct opinion. Some of the stories got far away from information and toward telling an open-ended story, and I enjoyed that a lot. Finally, many health provider audience members talk of rethinking disability and of making changes in practice that center on restoring and affirming people’s dignity and humanity in (rather than in spite of) difference. At the very least, attendees frequently report how the stories lead them to rethink disability in relation to their professional practice, commenting: “Have I been treating my disabled patients properly?” “These videos provoked thoughts about my actions on a day-to-day basis in my practice” and “Seeing the videos really helped to open my mind to these issues and made me aware of my own assumptions and it also made me think about genetic screening and selective terminations.” In terms of practice, some learners note that they now resolve to “collaborate with patient/client more in the care delivery process”; “advocate for everyone’s rights and inclusion”; “push back against professional/medical representation”; and “hone the activist in me to speak up more when physicians are not giving disabled patients the proper attention they deserve.” As one attendee summarizes: This presentation helped me to shift from framing the disability as a barrier to seeing that able-ism and a society with no access is the actual barrier. I hadn’t even been conscious of how my skewed my perception had been.

Conclusion Representations matter. They provide the occasion to both surface assumptive understandings of embodied difference and, when framed differently, to disrupt and shift understandings. The connection between representations and cultural understandings comes through in the relationship between image and audience responses in the HONY representations as well as in the digital/multimedia stories discussed. Although we can never be sure how representations will be taken up, and the kinds of understandings they will perpetuate, our comparative analysis throughout this chapter reveals that how (and from how) representations are produced and how they are framed matter as well. 374

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We believe that Re•Vision workshops and the videos that emanate from them disrupt such tropic representations of disability by opening up emergent alternatives for encountering, sensing and knowing difference. By enacting new public pedagogies of disability, these multimedia/digital stories offer audiences multiplicitous and emancipatory possibilities for living in/with differences. Significantly, artists who have participated in Re•Vision’s arts-based workshops—multimedia storytelling workshops and theater workshops with D/deaf and disabled people—report that these workshops have played an important role in their artistic development and in the development of Deaf and disability arts in Ontario.33 In addition, Re•Vision’s support of Deaf and disability arts through facilitating artistic training and artistic connections have led to other disability arts projects, including a multi-year, multi-site research program that we co-direct, Bodies in Translation, which aims to cultivate Deaf and disability arts, providing audiences greater access to such art, and studying the effects on social and cultural life. We are thinking further about how works of art by and about disabled people function as a form of public pedagogy in ushering in new understandings of disability. Our project demonstrates that giving audiences access to representations of disability that embrace complexity and diversity by speaking from embodied disability experience creates space not only for changing public pedagogies of disability but also our changing institutional cultures and professional practices. In this way, the infusion of nuanced and complex understandings into the cultural imagination and representational field may enable the development of new cultural narratives and institutional structures that are truly welcoming and inclusive of bodies of difference.

Notes 1 Rosemarie Garland-Thomson, “Feminist Disability Studies,” Signs: Journal of Women in Culture and Society 30, no. 2 (2005): 1557–1587. 2 Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 2017). 3 Carla Rice, Eliza Chandler, Kirsty Liddiard, Jen Rinaldi and Elisabeth Harrison, “Pedagogical Possibilities for Unruly Bodies,” Gender and Education 30, no. 5 (2018): 663–682; Carla Rice, Eliza Chandler, Jen Rinaldi, Nadine Changfoot, Kirsty Liddiard, Roxanne Mykitiuk and Ingrid Mündel, “Imagining Disability Futurities,” Hypatia 32, no. 2 (2017): 213–229; Carla Rice, Eliza Chandler and Nadine Changfoot, “Imagining Otherwise: The Ephemeral Spaces of Envisioning New Meanings,” in Mobilizing Metaphor: Art, Culture and Disability Activism in Canada, ed. Christine Kelly and Michael Orsini (Vancouver: UBC Press, 2016), 54–75; Carla Rice, Eliza Chandler, Elisabeth Harrison, Kirsty Liddiard and Manuela Ferrari, “Project Re•Vision: Disability at the Edges of Representation,” Disability & Society 30, no. 4 (2015): 513–527. 4 Henry A. Giroux, “Cultural Studies, Public Pedagogy, and the Responsibility of Intellectuals,” Communication and Critical/Cultural Studies 1, no. 1 (2004): 59–79. 5 Giroux, “Cultural Studies,” 59, 60. 6 Pierre Bourdieu, “For a Scholarship with Commitment,” Profession (2000): 44. 7 David T. Mitchell and Sharon L. Snyder, eds., The Body and Physical Difference: Discourses of Disability (Ann Arbor: University of Michigan Press, 1997), 47. 8 Beth A. Haller, Representing Disability in an Ableist World: Essays on Mass Media (Louisville, KY: Advocado Press, 2010). 9 Eliza Chandler, “Troubled Walking: Storying the In-Between,” Journal of Narrative Theory 47, no. 3 (2017): 317–336. 10 Jasbir K. Puar, “‘I Would Rather Be a Cyborg Than a Goddess’: Becoming-Intersectional in Assemblage Theory,” PhiloSOPHIA 2, no. 1 (2012): 49–66. 11 Carla Rice, Karleen Pendleton Jiménez, Elisabeth Harrison, Margaret Robinson, Jen Rinaldi, Andrea LaMarre and Jill Andrew, “Bodies at the Intersection: Reconfiguring Intersectionality Through Queer Women’s Complex Embodiments,” Signs: A Journal of Women in Culture and Society (forthcoming); Carla Rice, “The Spectacle of the Child Woman: Troubling Girls in/and the Science of Early Puberty,” Feminist Studies, 44, no. 3 (2018): 535–566; Nadine Changfoot and Carla Rice, “Aging with and into Disability: Futurities of New Materialisms,” in The Aging/Disability Nexus, ed. Katie Aubrecht, Christine Kelly and Carla Rice (Vancouver: UBC Press, forthcoming). 12 Brandon Stanton, Humans of New York, accessed December 2, 2015, www.humansofnewyork.com.

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Carla Rice and Eliza Chandler 13 Brandon Stanton, “It Went in Through My Ribcage and Stopped Against My Spine,” Humans of New York, September 22, 2013, www.humansofnewyork.com/post/62006587621/it-went-in-through-myribcage-and-stopped-against. 14 Stanton, “It Went in Through My Ribcage.” 15 Eliza Chandler and Carla Rice, “Alterity in/of Happiness: Reflecting on the Radical Possibilities of Unruly Bodies,” Health, Culture and Society 5, no. 1 (2013): 230–248; Carla Rice, Becoming Women: The Embodied Self in Image Culture (Toronto: University of Toronto Press, 2014). 16 Brandon Stanton, “My Mother and I Lost Our Apartment,” Humans of New York, December 25, 2014, www. facebook.com/humansofnewyork/photos/pb.102099916530784.2207520000.1455575685./843970802343688/? type=3&theater. 17 Stanton, “My Mother and I Lost Our Apartment.” 18 Stanton, “My Mother and I Lost Our Apartment.” 19 Chandler, “Troubled Walking,” 324–325. 20 Rose Jacobson and Geoff McMurchy, Focus on Disability and Deaf Arts in Canada (Ottawa: Canada Council for the Arts, 2010), https://canadacouncil.ca/research/research-library/2011/09/focus-on-disability-and-deaf-arts-in-canada. 21 United Nations, Convention on the Rights of Persons with Disabilities, December 13, 2006, www.un.org/disabil ities/convention/conventionfull.shtml. 22 Jihan Abbas, Kathryn Church, Catherine Frazee and Melanie Panitch, Lights … Camera … Attitude! Introducing Disability Arts and Culture (Toronto: Ryerson RBC Institute for Disability Studies Research and Education, 2004); Eliza Chandler, Nadine Changfoot, Carla Rice, Andrea LaMarre and Roxanne Mykitiuk, “Cultivating Disability Arts in Ontario,” Review of Education, Pedagogy, and Cultural Studies 40, no. 3 (2018): 249–264; Rachel Gorman, “Whose Disability Culture: Why We Need an Artist-Led Critical Disability Arts Network,” Fuse 34, no. 3 (2007): 46–51; Kirsty Johnston, “Building a Canadian Disability Arts Network: An Intercultural Approach,” Theatre Research in Canada/Recherches théâtrales au Canada 30, no. 1–2 (2009): 152–174. 23 Chandler and Rice, “Alterity in/of Happiness”; Rice et al., “Imagining Disability Futurities.” 24 For more information on Re•Vision’s methodology see Carla Rice and Ingrid Mündel, “Story-Making as Methodology: Disrupting Dominant Stories Through Multimedia Storytelling,” Canadian Review of Sociology/Revue canadienne de sociologie 55, no. 2 (2018): 211–231; Carla Rice and Ingrid Mündel, “Multimedia Storytelling Methodology: Notes on Access and Inclusion in Neoliberal Times,” Canadian Journal of Disability Studies 8, no. 1 (2019): 118–148. 25 Rice et al., “Project Re•Vision”; Katharine Viscardis, Carla Rice, Victoria Pileggi, Angela Underhill, Eliza Chandler, Nadine Changfoot, Phyllis Montgomery and Roxanne Mykitiuk, “Difference Within and Without: Health Care Providers’ Engagement with Disability Arts,” Qualitative Health Research (2018), doi: 10.49732318808252. 26 Dena Hassouneh-Phillips, Elizabeth McNeff, Laurie Powers and Mary Ann Curry, “Invalidation: A Central Process Underlying Maltreatment of Women with Disabilities,” Women & Health 41, no. 1 (2005): 33–50. 27 Chandler et al., “Cultivating Disability Arts in Ontario.” 28 Chandler et al., “Cultivating Disability Arts in Ontario.” 29 Reading Blind, directed by Sheyfali Saujani (Guelph, ON: Project Re•Vision, 2014), video. 30 Shift, directed by Eliza Chandler (Guelph, ON: Project Re•Vision, 2013), video, www.youtube.com/ watch?v=RBPFtYe5rRI. 31 Eliza Chandler, “Sidewalk Stories: The Troubling Task of Identification,” Disability Studies Quarterly 30, no. 3/4 (2010), http://dsq-sds.org/article/view/1293/1329; Chandler and Rice, “Alterity in/of Happiness. 32 Rice et al., “The Pedagogical Possibilities for Unruly Bodies.” 33 Chandler et al., “Cultivating Disability Arts in Ontario.”

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34 NEEDS MUST Digital Innovations in Disability Rights Advocacy Filippo Trevisan

Introduction Over the last two decades, new media technologies have transformed grassroots organizing and political advocacy. Established organizations have benefited from digital platforms for mobilizing both new and existing supporters quickly, as well as responding to citizen expectations for more interactive and meaningful ways to engage in advocacy initiatives.1 At the same time, new types of advocacy organizations have emerged that engage in an eclectic mix of online and in-person political action.2 More broadly, a number of platforms such as Change.org and Avaaz.org have been launched, which enable virtually anyone to channel their dissatisfaction with the status quo and desire for change into an e-petition or more sophisticated campaign. Although disability advocates started to use new media technologies relatively recently compared to other groups active in different policy areas, in very recent years e-advocacy has had a profound effect on the disability movement, particularly in the United Kingdom. Today, disability rights advocates use online platforms to campaign on a broad range of issues and put pressure on different stakeholders, including public decision makers, private enterprise, the news media and public opinion more generally. This very active landscape clashes sharply with previous assessments of the UK disability rights movement, which fewer than ten years ago was described as having lost its thrust and focused mainly on the “defensive engagement” of acquired rights.3 At the same time, despite some isolated exceptions,4 the study of digital disability activism is still very much in its infancy. How, then, did disability rights advocacy “go digital” and what are the implications of this transformation for its tactics and structure? This chapter tackles this question by reviewing some of the main trends that emerged in this area over the last decade, which include: (1) the importance of disruptive catalyst events as incentives for technological innovation; (2) changes to the structure of the disability movement and the emergence of a new generation of tech-savvy self-advocates; and (3) the evolution of social media tactics, in particular the use of personal stories in digital disability advocacy campaigns. A series of case studies is presented to illustrate these transformations. In line with the broader aim of this volume to serve as a reference work on disability and media, this chapter provides useful pointers for further reading and research on this important yet under-studied topic. The picture that emerges from the analysis presented here is one of a disability rights advocacy sector characterized by a renewed vitality and committed to reaching and engaging younger generations of disabled citizens through Internet-based media. 377

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Crisis as a Catalyst of Digital Disability Advocacy Research completed at the end of the noughties suggested that disability rights groups in the United Kingdom were unlikely candidates for a rapid digitalization. Instead, they constituted a notable exception in an advocacy landscape that was experimenting with various online tools and tactics. In particular, qualitative work carried out by the author with Scottish disability organizations between 2008 and 20095 showed that these groups had engaged with online platforms only in a very limited measure and were particularly wary of social media. Different types of organizations cited different reasons for their cautious approach. On the one hand, membership-led groups were concerned about access and accessibility issues, which in their eyes made new media technologies ineffective channels for engaging disabled people in advocacy work. On the other hand, larger charities feared losing control over their core messages by inviting usergenerated content, which in turn reflected a more widespread difficulty among professional nonprofit organizations engaged in e-advocacy to “recapture their voluntary spirit.”6 However, if we fast-forward to the present day, the situation appears to have changed radically as British disability rights organizations are very active online, including on social media. For example, in 2015 a UK-based grassroots group called #ToyLikeMe used Change.org to launch an online petition asking toymaker Playmobil to produce figures that better represent disabled people. In a short amount of time, over 50,000 people signed the e-petition. Eventually, Playmobil decided to consult with #ToyLikeMe and now plans to produce toys inspired by this campaign. More recently, disability self-advocates in the United States sought to raise awareness of disability issues and mobilize the disability community during the 2016 presidential election using the #CripTheVote hashtag on Twitter. Building on this experience, British activists launched their own version of the hashtag—#CripTheVoteUK—to bring attention to the issues faced by disabled people during the 2017 UK general election campaign. These are only a few of the many prominent examples of online disability activism that have emerged in very recent years. What, then, was at the root of this rapid but significant digital renaissance? Despite persisting access and accessibility issues that impact most harshly disabled people who are simultaneously part of other minorities and live in deprived communities,7 a growing number of disabled people have now earmarked part of their oftentimes-modest incomes to pay for an Internet connection. Recent research on the digital disability divide8 has shown that, controlling for basic demographics and socio-economic status, disabled Internet users are more likely than other users to engage in a range of online activities such as “sharing their own content and posting to blogs … that may in fact be aiding PWD [persons with disabilities] in managing and responding to a society that is not accessible to them” with potential to build “an alternative to the wider, ableist society.”9 Thus, many disabled users have come to consider an Internet connection to be a basic life necessity. This was captured effectively by a prominent disabled activist and blogger from the “Broken of Britain” network, who in a research interview with the author explained that: Five years ago … if you [as a disabled person] wanted to meet other disabled people you had to go to a day [care] centre, whereas with the Internet and social media we can reach out to each other in other ways … No-one [now] sees it [an Internet connection] as a luxury payment, it’s a lifeline, literally a lifeline.10 In light of this and given increasingly lower connection costs, particularly for mobile Internet,11 as well as recent advances in accessibility,12 the number of disabled Internet users has grown substantially in recent years. While collecting data on Internet use among disabled is challenging for a variety of reasons, including both contact methods13 and competing definitions of disability

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with which not all individuals who have impairments identify, the most recent available data for the United Kingdom indicates that a majority of disabled Britons describe themselves as regular Internet users.14 The diffusion of web technology among disabled people is likely to have contributed to the development of disability rights e-advocacy. Yet, the latter was far from an incremental process in the United Kingdom. In contrast, innovative e-advocacy efforts erupted suddenly and somewhat unexpectedly in Britain from 2010 onwards. In particular, 2010 was a watershed year that witnessed the launch of a myriad of online campaigns, all of which had the same objective: to stop a radical reform of the disability welfare system proposed by the newly elected Conservative–Liberal Democrat coalition government. The magnitude of the proposed welfare changes and the quick timetabling of the relevant legislative process challenged disability rights advocates and disabled people more generally to mount an effective opposition in very little time. The map of British disability advocacy emerged redesigned from this process and its tactics too were profoundly redefined, as is discussed in detail later in this chapter. At this point, it is helpful to clarify the role that the government’s plan for an overhaul of the welfare system had in this process. Sudden challenges to the status quo and traumatic events more generally have long been associated with an increase in public participation among people who otherwise are disengaged and disenfranchised.15 As Tarrow noted, “threats to interests, values, and, at times, survival that different groups and individuals experience” act as powerful calls to arms because “those with the most to lose … are most likely to engage in contention, since they face the greatest threat from inaction.”16 Given their role as amplifiers of sentiments and emotions, including anger, it has been argued that online media substantially accelerate this activation process.17 Yet, not every disruptive event has the same potential to trigger a swift and organized online reaction.18 For these reasons, it is useful to reflect on what made the UK welfare reform a prime candidate for inflaming the online disability community. First, the proposed welfare changes were poised to affect the everyday life of millions of disabled Britons. This meant that disabled Internet users, including those who had no interest or previous experience in public affairs, were able to discuss complex and technical policy changes through the lens of their own personal experience, lowering the threshold for participation in political discussion. Second, the UK welfare reform went significantly beyond being a mere cost-cutting exercise and involved instead a fundamental shift in the principles at the root of disability welfare provision.19 Thus, speaking at the height of the welfare reform controversy in 2011, British disability organizations unequivocally characterized the climate of emergency created by these policy proposals as a fundamental incentive to set aside their reservations about embracing online campaigning wholeheartedly. One important way in which established disability organizations sought to oppose the radical reform of disability welfare was by renewing their online action repertoire. For example, several organizations felt the need to go beyond email campaigns, which they considered to be ineffective. As a campaign officer from a large UK disability charity noted in a research interview at the time, members of the Westminster Parliament “feel like ignoring the template messages that go into their inbox … because there is an impression that people are doing this without really caring, which isn’t actually the case, but that’s how it is perceived.”20 To address email’s perceived lack of efficacy, British disability rights groups experimented with new platforms, including blending street rallies with social media advocacy. For example, supporters were invited to take part in online initiatives such as Twitter “storms” and virtual protest pages, which supplemented in-person events.21 “Disabled People Against Cuts” (DPAC) and the “Armchair Army (Virtual March 26 March 2011)” were two of the very first British advocacy networks that set up virtual protest pages on their website and Facebook group page respectively to provide people who were unable to join welfare reform protests in person due to illness, fatigue, transport problems, costs, difficulties with crowded places and other barriers with 379

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an alternative way to register their dissent. More recently, a similar initiative called the virtual “Disability March” (www.disabilitymarch.com) was organized in the United States to complement the Women’s March held in Washington, DC the day after the inauguration of Donald Trump as president. The Disability March enabled more than 3,000 disabled people from across the country to protest online. These and other similar online initiatives set up in recent years to resemble street protest as closely as possible, with contributors posting pictures of placards and geotagging their location, illustrate how new media technologies can contribute to the development of styles of collective action that are more accessible and better suited to the needs of disabled Internet users. In addition, the fact that virtual protest pages emerged in conjunction with acute political crises also corroborates the impression that these moments can act as powerful catalysts and incentives for digital innovation in the disability rights advocacy sector. In particular, the UK welfare reform forced British disability advocates to look for new solutions capable of mobilizing a large number of supporters quickly, which suggests that digital change in British disability advocacy was ignited by necessity. With that being said, it is important to note that the effects of this wave of innovation went beyond the introduction of new tactics, reaching deep into the structure of the UK disability movement. This triggered a process of evolution that is still ongoing and is discussed in detail in the next section.

Beyond Tactics: New Disability Rights Networks and Leaders Trailing both search engines and social networking platforms for evidence of digital mobilization against the UK welfare reform revealed that a range of established groups had launched specific online initiatives between the second half of 2010 and the beginning of 2011. In addition, new groups had formed and immediately took to the Internet to promote their campaigns and mobilize potential supporters, especially disabled Internet users. Some of these groups expanded their online presence and social media follower base substantially in the years since 2010 and continued to operate as this book went to print. While a detailed analysis of the most prominent of these initiatives is available in previous work by the author,22 it is useful to briefly reflect here on their structure, relationship with new media technologies and connections with past disability advocacy efforts (or lack thereof). Considering these factors, it is possible to identify at least three distinct types of disability groups that have engaged with e-advocacy in Britain from 2010 onwards. First, there are formal, established organizations, including both professionalized charities and self-advocacy organizations. Although some of these organizations launched their own individual anti-welfare reform campaigns, over 50 of them joined forces in a collaborative initiative called “The Hardest Hit.” This constituted the biggest joint effort among British disability organizations in over 20 years and a distinct web presence was developed for it. In addition, non-disabilityspecific charities also promoted anti-disability welfare reform initiatives online such as Citizens Advice’s “Make ESA [Employment and Support Allowance] Fit For Work” campaign. Second, there are “digitized activists.” That is, groups of self-advocates who were involved already in disability rights activism during the 1980s and 1990s. After meeting again at protest rallies in 2010, these activists set up a web presence to further their efforts, openly criticizing the initiatives set up by established disability organizations against the welfare reform. The most prominent of these groups is “Disabled People Against Cuts” (DPAC), which continued to blend traditional protest tactics with innovative uses of online media for digital dissent as this volume went to print. Third, there are “digital action networks.” These are online-only initiatives created by young disabled bloggers turned activists; given that the founders of these groups were geographically dispersed across the United Kingdom, Internet-based media played a pivotal role in enabling them to meet and collaborate. 380

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Overall, this suggests that online media have contributed to redesigning the ecology of disability advocacy in the United Kingdom. On the one hand, existing groups and experienced advocates have changed the ways in which they operate, building unusual alliances and experimenting with new and potentially controversial online tactics, as is discussed in detail in the next section. On the other hand, digital action networks have introduced an entirely new type of actor in the range of groups that represent disabled people and, for this reason, it is useful to discuss their genesis and structure in more detail. Two main elements separate digital action networks from the other types of disability rights groups outlined above. First, they are “digital native” structures, meaning that they originated entirely from connections established between founding members and organizers online and operate exclusively online without any physical headquarters or in-person meetings and demonstrations. The genesis of these online collectives mirrors a pattern also observed in online patient communities that rely extensively on crowd-sourced information shared by other users23 and favor digital native groups over established non-profit health organizations that have a higher entry threshold and often are seen as ineffective in representing their interests.24 By operating exclusively online and not requiring any sort of formal affiliation, British disability digital action networks such as the Broken of Britain in 2010–2011 and, more recently, the “Spartacus Network” and “Where’s the Benefit?” have managed to provide a genuine alternative for disabled Internet users compared to both established organizations and experienced self-advocates that continue to focus on more traditional tactics, including street protest. In particular, these digital action networks could target the large number of people within the disability community who were angry about disability policy proposals and disappointed with the response from formal advocacy organizations, but at the same time were also reluctant to engage in traditional, potentially confrontational street protests and looked for other ways to participate. A second element that distinguishes digital action networks is that they supported the emergence of a new and tech-savvy generation of disabled leaders. The founders of these networks are in their twenties and thirties, and typically had very little or no political experience prior to these campaigns. At the same time, however, many of them had blogged about their life and especially their experiences with the welfare system for several years before joining the networks listed above. Thus, they were able to leverage their familiarity with Internet-based media to acquire visibility, both online and on traditional news media, and devise innovative ways for other disabled Internet users to support their initiatives through blogs and social media, including Facebook and Twitter. Indeed, the founders of British disability digital action networks have not claimed to represent anyone but themselves. Yet, their centrality to the information flows in these groups pushed them into a position of de facto leadership. This mirrored some of the dynamics seen already in other grassroots networks that stemmed from online initiatives, including the Spanish Indignados and the Arab Spring activists.25 Furthermore, the popular personal blogs maintained by some of the founders of British disability digital action networks have enabled them to project a compelling “story of self” that is central to the development of leadership in emergent online advocacy groups.26 This new generation of leaders appeared conscious of the fact that expanding their efforts to include street protests may jeopardize their ability to control the movement they created and potentially lose relevance, as happened to the founders of the Facebook pages associated with the Egyptian revolution once this spilled into the streets.27 For example, the Broken of Britain acted quickly to correct a small group of supporters who had utilized its logo at a street rally in March 2011 without the founders’ permission.28 The development of this type of leadership addresses the lack of direction that has plagued other spontaneous online movements in the past,29 showing also that this young generation of tech-savvy disability self-advocates are aware of the importance of online “brand management.” 381

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However, relying on a small group of “self-appointed” leaders for decision-making also diminishes the resilience of this type of network, as was shown by the Broken of Britain’s relatively short active lifespan (October 2010–November 2011). Typically, digital disability action networks have followed an intermittent pattern, alternating between relatively short periods of extremely intense activity and weeks or even months of complete silence. This resonates with the tendency of digital activism to mobilize around specific issues and for time-limited periods instead of organizing for the long term. The experience of groups such as the Broken of Britain and Spartacus Network demonstrates that Internet-based media provide politically minded disabled users with opportunities to bypass existing advocacy groups, their leaders and traditional tactics. A new generation of disabled people has used new media technologies to put its stamp on disability rights advocacy in the United Kingdom. Disabled Internet users are afforded opportunities to represent themselves directly in the public arena, challenging the role of established advocacy organizations. Through this process, tech-savvy and motivated disabled people can also facilitate the involvement of others who traditionally are not interested in politics. One important way in which this has happened in recent years and an emerging trend in digital disability rights advocacy is by sharing personal stories on a variety of online platforms. This tactic and its implications are discussed in detail in the next section.

Digital Storytelling and Disability Advocacy Counter-Narratives The digitalization of disability rights advocacy has been underpinned by the development of a number of innovative tactics, many of which blend online and offline forms of action, from virtual marches to street protest. While a comprehensive review of these strategies is beyond the scope of this chapter, it is useful to reflect briefly on an increasingly popular trend among disability rights advocates, namely: the use of personal stories in online campaigns. Indeed, activists have long appreciated the persuasive power of storytelling for mobilizing supporters and influencing the public agenda.30 Thus, a growing number of advocacy groups and networks have used online platforms to “crowd-source” personal stories and generate coherent and compelling narratives capable of steering public opinion and influencing elected decision makers.31 While in countries like the United States disability advocates have long benefited from individual cases to advance their common causes through the use of litigation in court and testimony before legislative bodies,32 in the United Kingdom the incorporation of personal narratives in disability advocacy campaigns has been a source of controversy, pitting self-advocates against professionally run disability charities in the past.33 In particular, self-advocates have often worried that focusing too much on individual stories may detract from the collective nature of disabled people’s struggle and that traditional media could frame these narratives in ways that promote negative stereotypes of disability, including the idea of disablement as a “personal tragedy” rather than a social issue. Nevertheless, since early 2011 personal narratives have started to emerge organically as part of the user-generated content posted on the Facebook pages of some of the most prominent groups that campaigned against the UK welfare reform.34 Although formal disability organizations such as those involved in the Hardest Hit coalition invited their supporters to post personal stories on Facebook, many of these accounts also appeared spontaneously on the pages of digital action networks such as the Broken of Britain and even digitized activist groups such as DPAC. In the key period between February and May 2011, more than three-quarters of these stories were posted directly by disabled people and therefore represented the online “voices” of disabled Internet users.35 These opportunities for concerned disabled Internet users to tell their own stories go some way towards addressing the problematic tendency that some professionally run advocacy organizations historically have had to “speak for others” without appropriate consideration for 382

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the experience of their primary constituents.36 In addition, the content of these user-generated stories, which focused overwhelmingly on the welfare system and the projected changes to disability benefits, suggested that sharing personal experiences can provide a useful lens for disabled Internet users to collectively make sense of complex and technical policy changes. In light of this, it is reasonable to assume also that these stories had the potential to foster community building among people with similar experiences and who typically do not have opportunities to meet and exchange their opinions, particularly with regard to policy issues. Both existing and emergent advocacy groups quickly recognized that their supporters were eager to share their stories and put this desire to work to their advantage, particularly as a way to challenge representations of disability welfare claimants as “fraudsters” and “benefit cheats” that have become popular in British media outlets, especially tabloid newspapers37 that tend to ignore the perspective of disability benefit claimants.38 One of the first groups to use personal stories strategically was the Spartacus Network. Building on a previous “blog swarm” organized by its parent network—the Broken of Britain—in early 2011 and called “One Month Before Heartbreak,” the Spartacus Network invited supporters to post their stories to a dedicated blog (www. spartacus-stories.blogspot.com) and to tweet them using the hashtags #SpartacusStories and #MyDLA (short for “My Disability Living Allowance,” the main benefit affected by reform proposals). Having been launched just days after the release of this group’s own assessment of the submissions to the public consultation on DLA reform, which quickly became a top trending topic on Twitter in Britain,39 the #SpartacusStories initiative was a tactical success with very nearly 100 user-generated stories posted on the blog in less than 48 hours between 16 and 17 January 2012. The visibility achieved by these initiatives has since sparked the interest of other disability advocacy groups for using personal stories in online campaigns, including some that had criticized this tactic at the onset of the UK welfare reform. Most notably, DPAC’s digitized activists incorporated personal stories of disability in two important campaigns. First, DPAC included personal stories of disability in its Atos Games campaign, which was a series of protests timed to coincide with the 2012 Paralympic Games in London. This proved to be a successful strategy that generated a substantial increase in news coverage for DPAC’s activities. Crucially, more than half of the news items that covered these protests included at least one personal story of disability, suggesting that individual narratives are indeed powerful tools to attract the attention of the news media.40 Again in March 2013, DPAC used its blog to publicize a series of personal stories about people affected by the proposed closure of the Independent Living Fund (ILF), a benefit that supported independence for people with very complex needs and was terminated in 2015. In these stories, DPAC supporters used text, pictures and, in a few cases, YouTube videos to explain the positive impact that the ILF had on their lives and how these would be different without it.41 Although these stories were posted by DPAC’s Web administrator rather than directly by users/supporters, this campaign still represented a major shift in the online strategy of this group. Importantly, this campaign involved also a collaboration between DPAC, other disability and anti-welfare cuts groups such as Inclusion London and False Economy, as well as the Daily Mirror newspaper, which together produced a video with the stories of several disabled ILF recipients. Following these pioneering initiatives, more and more British disability organizations have started to experiment with personal stories in online campaigning in recent years. For example, Scope launched a “100 days, 100 stories” initiative on its website in the weeks leading up to the UK general election in May 2015 and again invited supporters to submit their stories during the 2017 general election campaign. As disability advocates appear to be learning from each other’s successes, as well as failures, their online repertoire remains in flux. The trend that has emerged around personal stories is likely to stir some controversy depending on who tells these stories, 383

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how they are framed and what kind of reactions they elicit in their target audiences, including public decision makers and the news media. That said, the use of personal storytelling online as “public narrative” to campaign on key policy issues42 can clearly foster a sense of commonality and mobilize the disability community into action. Polletta43 argued that stories told from a victim’s standpoint can convey a sense of agency and empowerment if they are narrated adequately. Social media platforms enable disability advocates to set up spaces where disabled Internet users can tell their own stories directly, presenting their experiences as “expert” views on disability in contrast with dominant narratives and media stereotypes.

Conclusion Despite embracing online campaigning later than other grassroots movements, British disability rights advocacy has undergone a rapid digitalization from 2010 onwards. The disability movement has emerged from this process not only revitalized, but also renewed in its structure and leadership. This fast-paced transformation was incentivized by crisis, in particular the welfare reform introduced between 2010 and 2012 by the then Conservative–Liberal Democrat coalition government. This state of emergency arguably ignited participatory change on a scale not seen elsewhere in disability e-advocacy. While there is much more to this transformation that could be covered in this chapter, two elements stand out as particularly innovative and potentially empowering, although their long-term sustainability and full implications for disabled citizens have yet to be determined. First, online platforms have enabled a new generation of tech-savvy and politically minded, if relatively inexperienced, disabled millennials to bypass established organizations, cultivate their own protest networks, mobilize supporters and gain credibility in the eyes of public decision makers and the news media. Although the disabled bloggers-cum-activists responsible for digital action networks such as the Broken of Britain and the Spartacus Network maintained an open and pragmatic approach to working with other groups, their “online-only” actions outflanked both household charities and experienced grassroots advocates such as those involved in DPAC. This proved that new media technologies, in particular social media platforms such Facebook, Twitter and YouTube, provide a valuable path to visibility, if not fully fledged leadership for young disabled people, making a significant contribution to the renewal of the disabled people’s movement. Second, storytelling on blogs and social media, including YouTube, has become a trending pattern in contemporary disability rights campaigning. The significance of this innovative tactic goes beyond its impact as a promotional strategy. Instead, storytelling has the potential to amplify the voices of ordinary disabled Internet users and place them at the center of a given advocacy effort while also providing a viable vehicle for community building through the process of sharing similar experiences. While disability-specific online portals such as the BBC’s Ouch have long been considered useful venues for promoting alternative representations of disability,44 the narratives discussed here were found outside “niche” spaces. This is important as it enables these stories to challenge dominant portrayals more effectively by reaching audiences that normally would not be exposed to this type of perspective on disability. Initiatives that bring together disability advocates and legacy media organizations, such as the DPAC–Daily Mirror collaboration mentioned above, constitute a crucial, if still rare, development in this area that may bring disabled people’s direct accounts into the mainstream in the longer term. In light of these considerations, one could be cautiously optimistic about the potential of Internet-based media to empower more disabled people in the future. However, as digital disability advocacy continues to evolve and expand, scholars and activists alike should consider whether this rapid digitalization could also be a source of further exclusion from the civic arena for the 384

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significant proportion of disabled citizens who still cannot use the Internet independently. Online-only campaigns and Internet-mediated leadership afford young disabled people opportunities to steer the disability debate in their direction. Yet, it also risks cutting out completely those who are disconnected, exacerbating their exclusion. Furthermore, representations of disability based on crowd-sourced stories collected through social media are likely to exclude the perspective of those who are not active on these platforms but at the same time may face even greater struggles than disabled people who are versed in Facebook, Twitter and Instagram. While legislators, technology developers and disability advocates continue to address broader access and accessibility issues, the leaders of new online disability rights initiatives should also think of ways to ensure that, in the interim, disabled people who do not use the Internet are put in a position to contribute in meaningful ways to current and future advocacy efforts.

Notes 1 Bruce Bimber, Andrew J. Flanagin and Cynthia Stohl, Collective Action in Organizations: Interaction and Engagement in an Era of Technological Change (Cambridge, UK: Cambridge University Press, 2012). 2 David Karpf, The MoveOn Effect: The Unexpected Transformation of American Political Advocacy (New York: Oxford University Press, 2012). 3 Angharad E. Beckett, Citizenship and Vulnerability: Disability and Issues of Social and Political Engagement (Basingstoke, UK: Palgrave Macmillan, 2006). 4 Katie Ellis, Gerard Goggin and Mike Kent, “Disability’s Digital Frictions: Activism, Technology, and Politics,” Fibreculture Journal 26, no. 26 (2015): 7–31. 5 Filippo Trevisan, “Scottish Disability Organizations and Online Media: A Path to Empowerment or ‘Business as Usual’?” Disability Studies Quarterly 34, no. 3 (2014), http://dsq-sds.org/article/view/3359/3648. 6 Lori A. Brainard and Patricia D. Siplon, “Toward Nonprofit Organization Reform in the Voluntary Spirit: Lessons From the Internet,” Nonprofit and Voluntary Sector Quarterly 33, no. 3 (2004): 435. 7 Stephen J. Macdonald and John Clayton, “Back to the Future, Disability and the Digital Divide,” Disability & Society 28, no. 5 (2013): 702–718. 8 Kerry Dobransky and Eszter Hargittai, “Unrealized Potential: Exploring the Digital Disability Divide,” Poetics 58 (2016): 18–28. 9 Dobransky and Hargittai, “Unrealized Potential,” 26. 10 Filippo Trevisan, Disability Rights Advocacy Online: Voice, Empowerment and Global Connectivity (New York: Routledge, 2016), 108. 11 International Telecommunication Union, Measuring the Information Society Report 2015 (Geneva: ITU, 2015). 12 Elizabeth Ellcessor, Restricted Access: Media, Disability, and the Politics of Participation (New York: New York University Press, 2016). 13 Monica Anderson and Andrew Perrin, “Disabled Americans Are Less Likely to Use Technology” (Washington, DC: Pew Research Center, 2017), www.pewresearch.org/fact-tank/2017/04/07/disabled-americansare-less-likely-to-use-technology. 14 William H. Dutton and Grant Blank, Cultures of the Internet: The Internet in Britain (Oxford: Oxford Internet Institute, 2013). 15 Laura Woliver, From Outrage to Action: The Politics of Grassroot Dissent (Urbana: University of Illinois Press, 1993). 16 Sidney G. Tarrow, Power in Movement: Social Movements and Contentious Politics (Cambridge, UK: Cambridge University Press, 1998), 86. 17 Zizi Papacharissi, “Affective Publics and Structures of Storytelling: Sentiment, Events and Mediality,” Information, Communication & Society 19, no. 3 (2015): 307–324. 18 W. Lance Bennett and Alexandra Segerberg, “The Logic of Connective Action: Digital Media and the Personalization of Contentious Politics,” Information, Communication & Society 15, no. 5 (2012): 739–768. 19 Peter Taylor-Gooby and Gerry Stoker, “The Coalition Programme: A New Vision for Britain or Politics as Usual?” The Political Quarterly 82, no. 1 (2011): 4–15. 20 Trevisan, Disability Rights Advocacy Online, 195. 21 Filippo Trevisan, “Disabled People, Digital Campaigns, and Contentious Politics: Upload Successful or Connection Failed?” in The Media, Political Participation, and Empowerment, ed. Richard Scullion, Roman Gerodimos, Daniel Jackson and Darren Lilleker (London: Routledge, 2013), 175–191.

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Filippo Trevisan 22 Trevisan, “Disabled People”; Trevisan, Disability Rights Advocacy Online. 23 Stefania Vicari and Franco Cappai, “Health Activism and the Logic of Connective Action: A Case Study of Rare Patient Disease Organizations,” Information, Communication and Society 19, no. 11 (2016): 1653–1671. 24 Lori A. Brainard and Patricia D. Siplon, “Cyberspace Challenges to Mainstream Non-Profit Health Organizations,” Administration and Society 34, no. 2 (2002): 141–175. 25 Paolo Gerbaudo, Tweet and the Streets: Social Media and Contemporary Activism (London: Pluto Press, 2012). 26 Ariadne Vromen, Digital Citizenship and Political Engagement: The Challenge from Online Campaigning and Advocacy Organizations (London: Palgrave Macmillan, 2016). 27 Thomas Poell, Rasha Abdulla, Bernhard Rieder, Robbert Woltering and Liesbeth Zack, “Protest Leadership in the Age of Social Media,” Information, Communication & Society 19, no. 7 (2016): 994–1014. 28 Trevisan, Disability Rights Advocacy Online, 166–167. 29 W. Lance Bennett, “Communicating Global Activism: Strengths and Vulnerabilities of Networked Politics,” Information, Communication & Society 6, no. 2 (2003): 143–168. 30 Francesca Polletta, It Was Like a Fever: Storytelling in Protest and Politics (Chicago: Chicago University Press, 2006). 31 Ariadne Vromen and William Coleman, “Online Campaigning Organizations and Storytelling Strategies: GetUp! in Australia,” Policy & Internet 5, no. 1 (2013): 76–100. 32 Doris Fleischer and Frieda Zames, Disability Rights Movement: From Charity to Confrontation, 2nd ed. (Philadelphia, PA: Temple University Press, 2011). 33 K. Doddington, R. S. P. Jones and B. Y. Miller, “Are Attitudes to People with Learning Disabilities Negatively Influenced by Charity Advertising?” Disability & Society 9, no. 2 (1994): 207–222. 34 Filippo Trevisan and Paul Reilly, “Ethical Dilemmas in Researching Sensitive Issues Online: Lessons From the Study of British Disability Dissent Networks,” Information, Communication & Society 17, no. 9 (2014): 1131–1146. 35 Trevisan, Disability Rights Advocacy Online. 36 Linda Alcoff, “The Problem of Speaking for Others,” Cultural Critique 20 (1991): 5–32. 37 Emma Briant, Nick Watson and Gregory Philo, “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, no. 6 (2013): 874–889. 38 Kayleigh Garthwaite, “The Language of Shirkers and Scroungers? Talking About Illness, Disability and Coalition Welfare Reform,” Disability and Society 26, no. 3 (2011): 369–372. 39 Patrick Butler, “How the Spartacus Welfare Cuts Campaign Went Viral,” Guardian, 17 January 2012, www.theguardian.com/society/2012/jan/17/disability-spartacus-welfare-cuts-campaign-viral. 40 Charlotte Pearson and Filippo Trevisan, “Disability Activism in the New Media Ecology: Campaigning Strategies in the Digital Era,” Disability & Society 30, no. 6 (2015): 924–940. 41 Filippo Trevisan, “Crowd-Sourced Advocacy: Promoting Disability Rights Through Online Storytelling,” Public Relations Inquiry 6, no. 2 (2017): 191–208. 42 Marshall Ganz, “Public Narrative, Collective Action, and Power,” in Accountability Through Public Opinion From Inertia to Public Action, ed. Sina Odugbemi and Taeku Lee (Washington, DC: World Bank, 2011), 273–289. 43 Polletta, It Was Like a Fever. 44 Estelle Thoreau, “Ouch!: An Examination of the Self-Representation of Disabled People on the Internet,” Journal of Computer-Mediated Communication 11, no. 2 (2006): 442–468.

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35 DISABILITY MEDIA WORK Katie Ellis and Melissa Merchant

Introduction This chapter addresses disability and the media from the perspective of people with disability working in the media. While there has been explicit academic and industry focus on improving representations of disability in the media, the topic of disabled media workers has not gained as much attention. People with disability experience higher rates of unemployment than the nondisabled population; this is particularly the case during times of economic hardship when employers are less willing to hire this group.1 During the recent US recession from 2007 to 2009, the number of disabled people in the workforce shrunk by more than 10 percent compared to a 2 percent reduction in the non-disabled workforce.2 The International Labour Organization reports that while people with disability make up 15 percent of the global population, 80 percent of whom are of working age, the right of people with disabilities to decent work is frequently denied.3 As of 2012 in the United States, “only 32.7 percent of working-age adults with disabilities were employed, compared with 73.6 percent of adults without disabilities.”4 In the United Kingdom, 46.3 percent of working-age disabled people were in employment in 2012, compared to 76.4 percent of working-age non-disabled people, this represents a 30.1 percentage point gap between non-disabled and disabled people, equalling more than 2 million people.5 In Australia, the 2012 labor force participation rates showed that 52.8 percent of persons with disability who were of a working age were employed, whereas 82.5 percent of persons without a disability who were working age were in employment.6 Employer fear regarding decreased productivity, increased supervision and prohibitive costs associated with accommodations are often cited as a main reason for the lower employment levels of people with disability.7 This fear is apparent in the UK creative media sector where only 5 percent of the workforce identified as having a disability in 2014 according to Creative Skillset. “This figure has remained constant since 2003 and is significantly lower than the 11 percent across the wider UK working population in 2014.”8 There have been attempts within the media and from people with disability to respond to this low figure, including the 2003 report Disabling Prejudice: Attitudes Towards Disability and its Portrayal on Television, which was undertaken by the British Broadcasting Corporation (BBC) in 2003; the report considers triggers for increased acceptance of depictions of persons with disability, one of which was “incidental inclusion—disabled people’s involvement in all levels of programming and production.”9 However, the focus of the report is predominantly on the representation of

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persons with disability within media texts, rather than persons with disability working in the media industry. This is also true for academic research in the field and as such, the issue remains under-represented in academic research. This chapter aims to address this shortfall, and covers two important areas of research in the context of people with disability working in the media: employers’ concerns when hiring people with disability; and disabled employees’ reservations, both when applying for positions and once employed. The chapter focuses on the employment of journalists and actors with disability in the media industry in the United Kingdom, United States and Australia. There is limited research in the field of participation in the media industry by persons with disabilities, what does exist largely comes from the United States, United Kingdom and Australia—although there is a small amount of research from Spain and Canada, which is addressed in the chapter.10 In response to anti-discrimination legislation introduced during the 1990s, governments and media institutions in these locations introduced initiatives to include people with disability in the media workforce such as quotas and commemorative films celebrating the introduction of disability discrimination legislation. More recently, cadetships have been made available to regional journalists with a disability by the Australian public broadcaster, the ABC.11 Similarly, in the United Kingdom, the BBC has introduced a number of quotas around the employment of people with disability.12 Within the academic literature, scholarship about media work focused on journalists with disability during the 1990s13 whereas interest in actors with disability dominates today, perhaps in response to actor-led initiatives emanating from the United Kingdom and United States. This research on media employment in the 1990s and today coincides with the passing of anti-discrimination legislation such as the Americans with Disability Act in the 1990s and more recently the twenty-fifth anniversary celebrations of these Acts as well as initiatives such as the United Nations Convention on the Rights of People with Disabilities 2006.

Background Finding accurate and up-to-date statistics for how many people with disability are currently working in the media, particularly how many are journalists, is difficult. In Australia, the Media, Entertainment and Arts Alliance (MEAA), the union representing creative professionals including journalists and actors, does not keep records of how many of their members report having disability and it appears no independent study has been conducted on the number of media workers with disability. In 2016, Screen Australia carried out a study on diversity on Australian television; however, while there are references to disabled media workers expressing a desire for authentic casting and for more positive depictions of persons with disability on Australian television, this research largely focused on representations of persons with disability in television programming, rather than participation in the industry by persons with disability.14 As mentioned above, in the United Kingdom, the Creative Media Workforce Survey reported that only 5 percent of the creative media workforce identify as having a disability.15 In the United States, the most recent figures located on newspaper employees with disabilities are from a 1992 study—the research showed that only 5.2 percent of major daily newspapers report employing at least one individual with a disability, which they say equals 133 people; of them, only 45 are reporters.16 Although this US research is now over 25 years old, it seems that breaking into the media business in Australia, the United Kingdom and the United States as a person with disability is still challenging today.

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Employers’ Concerns The notion of “employer fear” as the reason for the low employment figures of people with disability across all industries permeates the available literature. Lengnick-Hall, Gaunt and Kulkarni group employer concerns into three categories. First, employers are concerned about job qualifications or performance, citing concerns such as “people with disabilities will be less productive.” Second, employers fear increased costs associated with hiring people with disability, for example through necessary accommodations. Finally, concerns focus on the reactions of coworkers and customers.17 Employers also voice a concern that, once hired, they would be unable to terminate the contract of an employee with disability for poor performance.18 These concerns are reflected in other studies that have a specific focus on the employment of people with disabilities in the media. Research from Canada, Spain, the United Kingdom and Australia all report a common industry concern—that people with disability would not be able to be productive enough to contribute to the fast-paced media workforce.19 In addition, the research claims that employers who lack experience working with people with disability often overestimate the cost of accommodations20 and believe such an undertaking would cost the company more money in the long run.21 In reality, research in the United States conducted between 1992 and 1999 showed 71 percent of accommodations made cost less than USD 500, with 20 percent costing nothing at all and other studies report 51–54 percent of accommodations cost nothing.22 In addition, the British report Adjusting the Picture specifically addresses the issue of fear and the misconception that employing people with disabilities will result in an increased cost and workload for other staff. The report identifies some simple accommodations that can be made to increase the employment of people with disabilities in the media—as both behind the scenes and on-screen workers—such as arranging furniture in more accessible ways, allowing flexible working hours, providing assistive technology and ensuring buildings are accessible.23 These studies from different locations across the world reveal two important insights. First that people with disability may require accommodations to participate equally in the media and second that employers are concerned about how much these will cost.

Disabled Employees’ Concerns In addition to employer concerns, prospective employees with disability also face challenges. The first issue that is often reported is the decision as to whether or not they should “out” themselves as having disability when they apply for a position—the fear is that if they disclose their disability in an application, they will not be asked in for an interview. Studies show that journalists applying for positions in the media industry have the same concerns—journalism graduate Tamara Marshall says the she is not “confident enough” to mention that she wears a hearing aid on her CV, because she is afraid she will be discriminated against: “I always worry that I will never be perceived as someone who is as good as everyone else. I will always lack something, such as the same standards of professionalism and acceptance, within the workplace.”24 Research shows that Marshall’s fears are not misplaced—when potential employees disclose disability on their CVs they are less likely to be granted an interview.25 The fear is that employers may see them as too great a risk, both professionally and financially, and this is a common theme in discussions with journalists with disability: “Who wants to employ someone who will need expensive equipment provided, and who cannot 100 percent commit themselves to certain tasks like every ‘normal’ employee? My hearing impairment may be mild, but technically I am still disadvantaged.”26 Research with actors with disability also reflects the same need to alter the work environment, including simple accommodations such as “access to food; a nearby bathroom; large print scripts;

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having the director or production staff speak louder; assistance in walking long distances or climbing stairs or a place to sit while waiting.”27 However, actors with disability responding to a survey by the Screen Actors Guild (SAG) in 2005 showed people are either unwilling or afraid to ask for such accommodations.28 Although the SAG research and the aforementioned Adjusting the Picture report are now over a decade old, media interviews with actors with disability working in popular television today suggest things have not changed, despite the SAG’s ageing network— this will be discussed later in the chapter.29 It is, of course, illegal to discriminate against people with disability in all areas, including employment. In Australia, the Disability Discrimination Act states that it is unlawful for an employer to discriminate against a person on the grounds of disability unless “avoiding the discrimination would impose an unjustifiable hardship on the discriminator.”30 In the United Kingdom, a potential employer or recruiter can ask about disability: to determine if a candidate is capable of carrying out tasks that are essential to the work; to ascertain if an applicant is able to attend an interview; to work out if any reasonable adjustments are needed in any selection processes; to assist in monitoring; to increase the number of persons with disability they employ; or for national security checks.31 In the United States, the Americans with Disabilities Act (ADA) stipulates that employers are not permitted to ask questions about disability before a candidate is formally employed.32 However, for a person with a visible disability, it may not be possible to avoid a potential employer being aware of a disability and, as seen above, in spite of legislation against it, discrimination is therefore of concern in some hiring practices. For persons with invisible disabilities it is easier to choose not to disclose in the interview stage, indeed for some it may be an option not to disclose disability at all.33 In 2015, it was reported that that in the United States the most commonly cited conditions that led to complaints of discrimination against employers were invisible disabilities.34 While updated research on this issue in the context of the employment of people with disabilities in the media is not available, the media is increasingly paying attention to this issue with several articles addressing the topic being published in both the mainstream press and on user-generated blog sites in recent years. Indeed, many sources on the topic of disclosing disability during the hiring process, including interviews and blogs with employment experts, will first flag whether or not the disability is apparent, and therefore whether or not to disclose. For example, Hannah Morgan, a journalism graduate who uses a wheelchair, chooses to disclose this on her cover letters as any interviewer would see immediately that she has disability and “an interviewer’s initial reactions can also knock a candidate’s confidence.”35 Stephanie Anderson, writing on the Linkup Blog, adds to the debate: A physical disability that requires use of a wheelchair is obvious when you meet an employer, thus your wheelchair is disclosing for you … a cognitive disability, such as autism or PTSD, is often not apparent unless disclosed. Many disabilities, like sleep disorders and fibromyalgia, are hidden and therefore it’s your choice when and how you bring up the situation, if at all.36 Even after being hired, there are issues that journalists regularly face—these often surround concerns about tokenism, accessibility and ongoing prejudice. When Kay Maddox, a newspaper editor, had to take time off for major surgery relating to her spina bifida, she says that her employers only kept her on because she was “black, a woman, and disabled.”37 Indeed, a common theme that comes through multiple discussions with journalists who have a known and/or visible disability is that they have to work harder in order to overcome such accusations of tokenism or the prejudices evident in their colleagues and managers. Michelle Hackman, a journalist with vision impairment, writes that: 390

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Those who make it in the field are the standout go-getters who seek out work-arounds to lessen the burden of the disabilities on employers. They are the few willing to put extra effort into their stories in the hope that audiences will view their reporting as equal to that of non-disabled journalists. And they are the ones willing to tolerate relentless, if latent, prejudice from sources and editors alike who often have trouble squaring disability with competence.38 Another common issue raised by journalists with disabilities is that they feel limited in the types of issues they can report on. While some choose to be reporters who focus on disability issues, others have no interest in specializing in that field. In Chelsea Temple Jones’ examination of disabled journalists in Toronto, she writes of reporters who felt they were “tokenistic representatives of disability” who became the “go-to” adviser on disability.39 Yet some, like Barbara Turnbull, a journalist with the Toronto Star, does not see her role as such: I don’t think disability. And it’s not an area that I have traditionally been interested in covering … sometimes I feel like I am betraying the disabled population because I choose not to write many stories that have to do with disability. But I always felt living it was enough.40 An interesting example of how the mainstream media perceives journalists with a disability can be seen in the story of Serge Kovaleski, an American journalist with arthrogryposis, a disability that affects the joints. As with many journalists in the 1980s, his career began as an admin assistant at the Miami News where he was eventually given the opportunity to write for the paper.41 Kovaleski then moved on to the New York Daily News, the Washington Post and, since 2006, the New York Times. In 2009, Kovaleski was awarded the Pulitzer Prize for Breaking News Reporting as part of an investigative team. There was no suggestion of tokenism on behalf of the Prize board—Kovaleski’s stories did not have a disability focus, and his own disability was not seen to have played any role in his success as a well-respected, highly experienced journalist. Indeed, over his career, Kovaleski’s articles have included reports on the Oklahoma City bombings, the Eliot Spitzer prostitution scandal (the story that won him a Pulitzer), the Boston Marathon bombings, the Aurora Batman shooting and, most recently, the new Harper Lee novel (for which he won the New York Times’ Publisher’s Award for journalistic excellence in 2015).42 In summary, prior to late 2015, Serge Kovaleski was simply an investigative reporter who had worked for a number of US newspapers. That all changed when, as part of his presidential election campaign, Donald Trump used an article written by Kovaleski in the Washington Post following the attacks on the World Trade Center as evidence that “thousands and thousands of people were cheering as the building was coming down.”43 Kovaleski’s response to Trump was: “I certainly do not remember anyone saying that thousands or even hundreds of people were celebrating … that was not the case, as best as I can remember.”44 However, the issue here is not Trump’s misguided use of rhetoric, but rather his actions a few days later in a campaign rally in South Carolina on November 24, 2015, when Trump mimicked the reporter’s hand movements while saying, “Now this poor guy —you’ve got to see this guy, ‘Ah, I don’t know what I said! I don’t remember!’”45 When confronted about his ableist actions, Trump not only denied mocking Kovaleski, he denied ever meeting him, something that was subsequently proven false.46 On November 24, Trump was quoted as having stated in a Twitter post that Kovaleski should “stop using his disability to grandstand and get back to reporting.”47 It is worth noting here that Kovaleski has shown little evidence of such parades—his Wikipedia page, most of which is given over to the controversy,

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was only created on November 27, 2015.48 Indeed, he has remained out of the spotlight, preferring instead to focus on the subjects of the articles he writes. Within traditional media, there are some jobs that allow persons with disability to remain in the background. These “invisible” jobs mean that the public do not see a face or a body, and therefore the work can belong to anyone. This was the case with Serge Kovaleski—his interviewees may have known he had disability, but his readers did not. Yet, following Trump’s comments, Kovaleski was thrust into the spotlight. His “outing” caused an immediate public reaction, with people both inside and outside the media springing to his defence against Trump. Arguably, the incident was purely another example of the ways disability is used as a narrative prosthesis within culture49— Kovaleski was clearly constructed as the poor disabled man, subject to the taunts of someone with more physical and cultural power. He occupied a position of pity and disempowerment. However, while such portrayal of disability in the media has been a key focus of disability media studies for over 30 years–—including the rise in research into media accessibility in the last decade—–the representation of people with disability employed in the media remains an under-researched area. Kovaleski’s story is a good example of this—the media focus on his maligned misrepresentation was far greater than any previous spotlights on his journalist work.

Now Media: Web Series and Disability Acting Only three people with an obvious disability have ever won an Academy Award.50 A SAG study into disabled actors found that “no matter what the role, having a disability was not considered an advantage, even when auditioning to play a character with a disability.”51 Rather, these roles go to established actors who can attract a greater audience.52 Indeed, when Marlee Matlin, a Deaf actress, won an Oscar early in her career for Children of a Lesser God, a film in which she portrayed a character who was also D/deaf, critics referred to her as a “pity vote” and declared her career as DOA, “deaf on arrival.”53 The criticism arose because Matlin was a Deaf woman who was playing a D/deaf character, therefore she wasn’t really “acting.”54 Significantly, when non-disabled actors portray disabled characters in film, they are often awarded for their “efforts” with Oscars—between 1927 and 2012, portrayals of this genre accounted for 16 percent of the winners in both best actor and actress categories.55 Conversely, while there is a dearth of disabled actors in film, as other chapters in this volume illustrate, there has been an increased number of characters with disability appearing in popular television in recent years, however they are not necessarily portrayed by actors with disability. For example, the American independent media-monitoring group Gay and Lesbian Alliance against Defamation (GLAAD) report an increasing number of characters with disability appearing in prime time television over a five-year period from 2010 to 2015.56 They began collecting data on disability in 2010, and in 2015 this number started decreasing and fell to below 1 percent.57 Significantly, a number of these disabled actors have appeared in the most popular television programs such as Switched at Birth, Sons of Anarchy, Breaking Bad, Game of Thrones and American Horror Story—including characters such as R. J. Mitte’s Walt Junior in Breaking Bad, Peter Dinklage’s Tyrion Lannister in Game of Thrones and Marlee Matlin’s numerous offerings in programs as diverse as The West Wing, The L Word and Switched at Birth. However, these portrayals of a disabled character by a disabled actor are notable exceptions—just as with film, research shows it is rare for people with disability to be cast in television roles, even those portraying people with disability.58 The American-based Ruderman Foundation conducted research into how often people with disability were cast in televised roles portraying characters with disability. They found that only 5 percent of characters with disability were portrayed by actors with personal experience of disability. An earlier study conducted by SAG found that less than 0.5 percent of dialogue spoken on television is by a person with disability.59 392

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In parallel to this quantitative content analysis research, researchers have interviewed actors with disabilities to discover qualitative insights regarding the barriers they face to gaining employment. Just like the comments made by their journalist counterparts above, actors with disability claim a pervasive prejudice against them within the entertainment industry. For example, returning to the common issue of disability disclosure at application or interview, actors’ concerns regarding this were highlighted within a 2012 study conducted by Lori Breeden in the Los Angeles area. Some respondents feared disclosing their disability to the industry, believing the response would result in prejudice and less opportunities to audition for roles, even though, in contrast to this perception, research by SAG discussed earlier suggests accommodations required by most disabled actors are not costly or hard to deal with:60 I didn’t know whether I wanted to be included in their books [Media Access Office PWD roster featuring profiles and photos] that go out to the industry. Because all that did was alert all the people who didn’t know that they should be keeping me out of the door that they should be keeping me out of the door. So it was a tough call for me … People are afraid to hire us … it [upsets me], because they are afraid to hire us because they think we’re going to make a stink, because they think we’re going to be harder to deal with, and I don’t like that perception at all!61 Despite this, Breeden also discovered an increasing sense of community among actors with disabilities. The same respondent described being mentored by another disabled actor who encouraged her to use her disability as a strength: “Use it in your work, use it, use it, use it. Don’t hide it, don’t put it away for anyone else, use it, make it part of all your characters.” And I’m like, “Wow that’s weird!” And that’s hard too because … it is this thing that so many people are like, “Ooh, she has something wrong with her …” if I put it out there on display then I don’t know. But maybe that’s the way to go. Maybe to celebrate it.62 In response to this lack of available acting jobs yet a desire to “use” it, as Breeden’s respondent articulates above, many actors with disability have therefore turned to web series, most famously Teal Shearer, actor in and creator of My Gimpy Life. My Gimpy Life, which takes an irreverent look at disability and pokes fun at disability social constructions, initiated a genre of similarly themed disability-focused web series such as Very Special Episodes, Uplifting Dystrophy, Stare at Shannon and Don’t Shoot the Messenger.63 These series embrace a disability humor approach to social disablement and include such issues as inspiration porn, inaccessible public space, problematic online dating and prejudice towards disabled actors. The creators of each express a desire to use disability and represent it in a more authentic way to emphasize the importance of disability diversity in media. Shannon Devido, creator of Stare at Shannon, a web series aiming to dispel social perceptions about disability via disability comedy, comments that web series offer an important alternative to disability representation in the mainstream media and entertainment that tends to represent a “skewed image” of “what they think people with disabilities feel and how they act.”64 Part of the problem, Devido explains, is a lack of disability visibility in the media and everyday life—people aren’t sure how to react to people with disabilities, for example, is it okay to laugh? The potentially positive impacts of the web series’ comedic approach to disability representation are evident—the actress was recently cast in a role on the Hulu original program Difficult People, which did not call for someone with a disability: I play this crazy storyteller … I get on stage and Billy Eichner and Julie Klausner are making fun of me … Any actor with a disability has been pigeon-holed into playing 393

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a person with a disability and normally they’re sad and pathetic characters. In this, I get to play a funky role. She wears glasses, so my agent submitted me and I just kind of fit the acting style they were looking for. And it turned out I was the right person for the part, and that I think that specific role is so exciting to me because of that one fact [that it didn’t actually call for a wheelchair]. Very, very, very rarely do you ever hear a casting director make that call, and she did.65 The web series discussed so far take a somewhat light-hearted approach to make these cultural disability critiques, yet other disability web series cross into other genres such as science fiction. Britain Valenti’s science fiction web series Interrogation—set in a dystopian future where a team of ex-soldiers overthrow a totalitarian government—was created with disability diversity both behind the scenes and in acting roles. One of the rebels, Mikey, is portrayed by actor Scott Rosendall who describes his experiences as a working actor with disability as: everything from star treatment to being downright insulted. While it’s likely true there are more characters with disabilities portrayed on television and film today than ever before, the disparity between the percentage of disabled individuals in society and on screen is still glaring.66 However, while actors with disability report turning to web series out of desperation for work, it is not unusual for most actors—both disabled and non-disabled—to appear in a web series during the course of their career.67 Web series offer important opportunities for diversity because they focus on attracting smaller or niche audiences. They can be a means to show more diverse representations in the mainstream and/or, through high production values and wide distribution, an end in themselves. This has led to an increased number of web series being produced not only in the United States, but also internationally. Within Australia, the rise in the amount of material being produced is marked; a survey carried out by the Australian Bureau of Statistics showed 3,248 episodes in 2016, compared with 107 episodes in 2012.68 In recognition of the work being done through online content, the AACTA (Australian Academy of Cinema and Television Arts) Awards now include a category for online videos or series.69 Access to increasingly affordable digital technology has been seen as levelling “the playing field, allowing emerging talent to compete alongside bigger budget productions.”70 In the United Kingdom, web series are also becoming progressively more popular and are seen as a possible stepping-stone to success in other mediums. The advantage, argues Adam Manuel of the HuffPost UK, is that people who produce their own web series are also self-distributors who have the ability to transfer their own files; while this may not necessarily lead to massive profits or offers of jobs with the big industry players, it can help those in the business to build up influence.71 Web series offer a unique opportunity for unseen stories via “new industrial arrangements, including the diversification of talent on- and off-screen.”72 As Felicia Day, creator of The Guild, explains, web series offer a “place to tell stories and present characters that haven’t been seen; to cast actors in roles that would never get hired by a network.”73 Actors with disability, who describe never being hired, or even invited for auditions, are therefore finding opportunities for work and construct a disability narrative in this new medium.

The Effluent Citizen A final, important area in this discussion is the creation of impairment in media industries via unsafe work practices. Although outside the scope of this chapter, it is important to signal toward this emerging area of disability media research. As chapters throughout this volume illustrate, we 394

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consume media in different ways using new technologies that are rapidly superseded. To keep prices low for consumers, these technologies are typically manufactured in third world countries where workers are subject to poor and inhumane working conditions. In 2013 it was reported that Samsung factory workers in Brazil were given just 65 seconds to assemble a television set and 33 seconds to assemble a mobile phone.74 The disabling impacts of poor working conditions on workers’ mental health at Apple Foxconn manufacturing plants in China first came to light in 2010,75 yet in 2016 reports of excessive overtime and low pay continued.76 Jack Qui places this Apple Foxconn alliance at the center of what he describes as a new form of slavery, so called “iSlavery,” a system of alienation, domination and exploitation made possible by the first world’s addiction to digital technologies and capital accumulation.77 Qui makes links between the iSlaves of the twenty-first century toiling in Chinese factories and earlier systems of slavery such as the seventeenth-century transatlantic triangular trade system. The term iSlavery was first coined after several Apple Foxconn factory workers committed suicide in 2010. However, the disabling impacts of poor working conditions is not unique to Apple or China, Toby Miller also notes the impacts of our drive to upgrade digital products on factory workers in Mexico. These workers, described by Miller as “effluent citizens,” are also subject to dangerous working conditions that affect their physical and mental health. The effluent citizens, Miller explains, are “those working with and as the detritus of society.”78 Focusing on the impact of our consumption of media hardware on low-income workers in Mexico, Miller identifies a disturbing trend whereby both the manufacture and disposal ends of the production cycle create disability. First, these workers may acquire impairments working in factories to manufacture devices and hardware for the first world as outlined above.79 Once these devices are superseded and therefore discarded, a second industry of informal workers, again in Mexico, take these machines apart to recycle them. At various stages in this cycle these low paid and despised workers are subject to dangerous emissions that affect both their bodies and alter their fertility and DNA, thereby also affecting future generations.80 This is a critical area of future research that would benefit from disability media-focused analysis.

Conclusion Throughout this chapter we have sought to raise the topic of the employment of people with disability in media industries as a fertile area of future research. As a result of discriminatory attitudes and environments, people with disability experience higher rates of unemployment than their non-disabled counterparts. It has been shown that employers prefer not to hire people with disability, voicing concerns associated with productivity, cost (particularly regarding perceived accommodations) and interpersonal relationships. Employees with disability voice concerns over disclosure and fair representation. As a result, this population faces unique issues in relation to equal opportunities and employment. In terms of traditional media, it is evident that there has been little academic engagement with the issue of under-representation of persons with disability working within the industry. The stories being told are largely coming from newspaper articles and online blogs. However, through these stories it can be seen that there is a reflection of the broader concerns expressed by persons with disability in relation to working. Entering the media industry is particularly challenging, given the existing prejudices to disability and a perceived inability to keep up with the fast pace of the sector. There is a genuine fear of how disclosure of disability will impact on being hired, holding a position and being promoted. Some journalists have indicated that, at times, they feel they have been hired as the “token” person with disability, calling into question the validity of their work. However, even those who have been successful in their field, such as Serge Kovalseki, still have the potential to be subject to mockery and ableism based solely on disability. 395

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Notes 1 Philip R. de Jong, Sickness, Disability and Work: Breaking the Barriers—A Synthesis of Findings Across OECD Countries (Geneva: Blackwell, 2011). 2 Tom Harkin, “Disability Employment: Are We at the Tipping Point?” Huffington Post, July 16, 2012, www.huffingtonpost.com/sen-tom-harkin/disability-employment-are_b_1677380.html?ir=Australia. 3 “Disability and Work,” International Labour Organization, accessed August 24, 2017, www.ilo.org/global/ topics/disability-and-work/lang–en/index.htm. 4 Purvi Sevak, Andrew J. Houtenville, Debra L. Brucker and John O’Neill, “Individual Characteristics and the Disability Employment Gap,” Journal of Disability Policy Studies 26, no. 2 (2015): 80. 5 “Disability Facts and Figures,” Department for Work and Pensions, accessed October 19, 2017, www.gov. uk/government/publications/disability-facts-and-figures/disability-facts-and-figures. 6 “Disability and Labour Force Participation,” Australian Bureau of Statistics, accessed October 19, 2017, www.abs.gov.au/ausstats/[email protected]/mf/4433.0.55.006. 7 Bob Peck and Lynn Trew Kirkbride, “Why Businesses Don’t Employ People with Disabilities,” Journal of Vocational Rehabilitation 16, no. 2 (2001): 71–75; Olivia Raynor and Katharine Hayward, “Breaking into the Business: Experiences of Actors with Disabilities in the Entertainment Industry,” Journal of Research in Special Educational Needs 9, no. 1 (2009): 39–47. 8 Creative Skillset, The Creative Media Workforce Survey 2014 Summary Report (London: Creative Skillset, 2015), 4, https://creativeskillset.org/assets/0001/0465/Creative_Skillset_Creative_Media_Workforce_Sur vey_2014.pdf. 9 Jane Sancho, Disabling Prejudice: Attitudes Towards Disability and its Portrayal on Television (London: British Broadcasting Corporation, Broadcasting Standards Commission and the Independent Television Commission, 2003), 10, http://downloads.bbc.co.uk/guidelines/editorialguidelines/research/disabling-prejudice.pdf. 10 See for example Melissa Sgroi, “‘I Should at Least Be Given a Chance to Try’: The Experience of Media Workers with Disabilities in the United States During Postsecondary Education and Early Career,” Disability & Society 31, no. 1 (2016); Gerard Goggin and Christopher Newell, “Imagining Diversity: Disability/ Film,” (paper presented at the Australian and New Zealand Communication Association Conference Proceedings (ANZCA03) Brisbane, 2003); Katie Ellis, Disability Media Work: Opportunities and Obstacles (New York: Palgrave Macmillan, 2016). 11 ABC, “ABC News Cadet Journalists Program 2018,” ABC, accessed August 24, 2017,https://webcache. googleusercontent.com/search?q=cache:eerVWot38-kJ:https://secure.dc2.pageuppeople.com/apply/Trans ferRichTextFile.ashx%3FsData%3DFwg6i4Eli-CyzZT75HrhUs-O3jSqwP2Uzff7rSdL26T_8-fn13eKllrtXQ FOg3_4PQf9mJJqMmY%257E+&cd=6&hl=en&ct=clnk&gl=au&client=firefox-b. 12 Jane Martinson, “BBC News Launches £1m Drive to Recruit Disabled Journalists,” Guardian, May 4, 2016, www.theguardian.com/media/2016/may/04/bbc-news-disabled-journalists-james-harding-diversity. 13 See chapter 3 in Ellis, Disability Media Work. 14 Screen Australia, Seeing Ourselves: Reflections on Diversity in Australian TV Drama (Ultimo, NSW: Screen Australia, 2016), www.screenaustralia.gov.au/getmedia/157b05b4-255a-47b4-bd8b-9f715555fb44/TVDrama-Diversity.pdf. 15 Creative Skillset, The Creative Media Workforce Survey 2014. 16 Joseph Keefer and Michael Smith, “Newspaper Employment of Journalists with Disabilities,” Newspaper Research Journal 13 & 14, no. 4 & 1 (Fall 1992/Winter 1993): 43. 17 Mark L. Lengnick-Hall, Philip M. Gaunt and Mukta Kulkarni, “Overlooked and Underutilized: People with Disabilities Are an Untapped Human Resource,” Human Resource Management 47, no. 2 (2008): 259. 18 Peck and Kirkbride, “Why Businesses Don’t Employ People with Disabilities,” 73; Lengnick-Hall, Gaunt and Kulkarni, “Overlooked and Underutilized,” 258. 19 Richard Cavanagh, Lil Krstic and Nancy Steele, The Presence, Portrayal and Participation of Persons with Disabilities on Television Programming: A Research Report Presented to the Canadian Association of Broadcasters (Manotick, ON: Connectus, 2005), www.cab-acr.ca/english/research/05/sub_sep1605_research.htm; Robin Blake and Jenny Stevens, eds., Adjusting the Picture: A Producer’s Guide to Disability (London: Disability Rights Commission Employers’ Forum on Disability and Broadcasters’ Disability Network and the Independent Television Network, 2001), www.ofcom.org.uk/static/archive/itc/uploads/Adjusting_the_Picture. pdf; Fundación ONCE, “Increasing and Improving Portrayal of People with Disabilities in the Media,” (Madrid: Fundación ONCE, [2008]), www.media-diversity.org/en/index.php?option=com_content&vie w=article&id=1078percent3Aincreasing-and-improving-portrayal-of-people-with-disabilities-in-the-med ia&Itemid=57; Ellis, Disability Media Work. 20 Cavanagh et al., The Presence, Portrayal and Participation of Persons with Disabilities on Television Programming.

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Disability Media Work 21 Anne Marie Cooke and Neil H. Reisner, “The Last Minority,” American Journalism Review (December, 1991), http://ajrarchive.org/article.asp?id=1298. 22 Lengnick-Hall et al., “Overlooked and Underutilized,” 264. 23 Blake and Stevens, “Adjusting the Picture.” 24 McEachran, “The Challenges Facing Disabled Journalists Entering Employment.” 25 Mason Ameri et al., “The Disability Employment Puzzle: A Field Experiment on Employer Hiring Behavior,” NBER Working Paper No. 21,560 (2015): 2. 26 McEachran, “The Challenges Facing Disabled Journalists Entering Employment.” 27 Raynor and Hayward, “Breaking into the Business,” 44. 28 Raynor and Hayward, “Breaking into the Business,” 44. 29 Mark Hay, “Mat Fraser on the Future of Disability in the Media,” GOOD, February 2, 2016, www.good. is/articles/mat-fraser-american-horror-story-freakshow-disability-media-oneofus; Christina Steven, “Toronto Actors with Disabilities Kept out of Auditions Due to Lack of Accessibility,” Global News, December 2, 2015, http://globalnews.ca/news/2376648/toronto-actors-with-disabilities-kept-out-of-audi tions-due-to-lack-of-accessibility. 30 Disability Discrimination Act 1992 (Cth) (1992), www.austlii.edu.au/au/legis/cth/consol_act/dda1992264. 31 “Disability Rights,” Department for Work and Pensions, accessed August 18, 2017, www.gov.uk/rightsdisabled-person/employment. 32 Disability Rights Iowa, “Frequently Asked Question About Disability Disclosure Under the Americans with Disabilities Act (ADA),” accessed August 18, 2017, http://disabilityrightsiowa.org/wp-content/ uploads/2012/11/FAQ-About-Disability-Disclosure-under-the-ADA.pdf. 33 Rebecca Spirito Dalgin and James Bellini, “Invisible Disability in an Employment Interview: Impact on Employers’ Hiring Decisions and Views of Employability,” Rehabilitation Counselling Bulletin 52, no. 1 (2008): 7–8. 34 Naomi Gingold, “People with ‘Invisible Disabilities’ First for Understanding,” NPR Health, March 8, 2015, www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding. 35 McEachran, “The Challenges Facing Disabled Journalists Entering Employment.” 36 Stephanie Anderson, “Should You Disclose a Disability in a Job Interview?” Linkup Blog, April 1, 2015, http://blog.linkup.com/2015/04/01/should-you-disclose-a-disability-in-a-job-interview/#sthash. UnJCWGZj.dpbs. 37 Cooke and Reisner, “The Last Minority.” 38 Michelle Hackman, “Obstacles and Opportunities for Journalists with Disabilities,” Nieman Reports, March 30, 2016, http://niemanreports.org/articles/obstacles-and-opportunities-for-journalists-withdisabilities. 39 Chelsea Temple Jones, “‘Why This Story Over a Hundred Others of the Day?’ Five Journalists’ Backstories About Writing Disability in Toronto,” Disability and Society 29, no. 8 (2014), 1211; see also Ken Rains, “Educating Others, Never Really Ends,” in The Disabled, the Media and the Information Age, ed. Jack Nelson (Westport, CT: Greenwood Press, 1994). 40 Jones, “Why This Story.” 41 “Pulitzer Prize Winning Journalist Serge Kovaleski ‘79 Asks the Tough Questions,” Dwight School, March 18, 2016, www.dwight.edu/news/news-post-page/~post/pulitzer-prize-winning-journalist-sergekovaleski-79-asks-the-tough-questions-20160318. 42 “Pulitzer Prize Winning Journalist.” 43 Glenn Kessler, “Trump’s Outrageous Claim That ‘Thousands’ of New Jersey Muslims Celebrated the 9/11 Attacks,” Washington Post, November 22, 2015, www.washingtonpost.com/news/fact-checker/wp/2015/ 11/22/donald-trumps-outrageous-claim-that-thousands-of-new-jersey-muslims-celebrated-the-911-attacks/? utm_term=.25544fa84ef8. 44 Kessler, “Trump’s Outrageous Claim.” 45 DelReal, “Trump Denies Mocking Journalist Who Has Disability, Demands an Apology,” Washington Post, November 26, 2015, www.washingtonpost.com/politics/trump-denies-mocking-journalist-with-disability– and-demands-an-apology/2015/11/26/797e011c-9492-11e5-b5e4-279b4501e8a6_story.html? utm_term=.6b0f00b209e3. 46 Greg Sargent, “Another Witness Contradicts Donald Trump’s Claims About Disabled Reporter,” Washington Post, November 30, 2015, www.washingtonpost.com/blogs/plum-line/wp/2015/11/30/another-wit ness-contradicts-donald-trumps-claims-about-disabled-reporter. 47 Lauren Gambino, “Donald Trump Says New York Times Reporter Is ‘Grandstanding’ on Disability,” Guardian, November 27, 2015, www.theguardian.com/us-news/2015/nov/26/donald-trump-mock-new-yorktimes-reporter-disability.

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Katie Ellis and Melissa Merchant 48 “Serge F. Kovaleski: Revision History,” Wikipedia, accessed August 24, 2017, https://en.wikipedia.org/w/ index.php?title=Serge_F._Kovaleski&action=history. 49 See David Mitchell and Sharon Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2000). 50 Lucy Rodgers, “How to Win an Oscar,” BBC, February 27, 2012, www.bbc.com/news/entertainmentarts-16932374. 51 Raynor and Hayward, “Breaking into the Business,” 43. 52 Xaque Gruber, “Game of Silence’s Eileen Grubba Shines a Light on Actors with Disabilities,” HuffPost Accessibility, July 4, 2016, www.huffingtonpost.com/xaque-gruber/game-of-silences-eileen-g_b_9637490.html; Hay, “Mat Fraser on the Future of Disability in the Media.” 53 Lenore Sobota, “Marlee Matlin: Combine Courage with Dreams,” Pantagraph, March 25, 2015, www.panta graph.com/news/local/education/marlee-matlin-combine-courage-with-dreams/article_fe9b9913-7f575488-a9f8-a0a6d0c5c2e8.html. 54 David Fabry, “The ‘D’ Word: An Interview with Marlee Matlin,” July/August, 2008, www.howsyourhear ing.org/AudiologyToday/ATMarleeMatlin.html. 55 Rodgers, “How to Win an Oscar.” 56 Gay & Lesbian Alliance Against Defamation, Where We Are on TV Report: 2010–2011 Season September 2011, GLAAD, www.glaad.org/publications/tvreport10; GLAAD, Where We Are on TV 2011–2012, GLAAD, www.glaad.org/publications/whereweareontv11; GLAAD, Where We Are on TV 2012–2013, www.glaad.org/files/whereweareontv12.pdf; GLAAD, 2013 Where We Are on TV, www.glaad.org/files/ 2013WWATV.pdf; GLAAD, Where We Are on TV Report 2015–16, GLAAD, www.glaad.org/files/ GLAAD-2015-WWAT.pdf. 57 GLAAD, Where We Are on TV Report 2015–16, 5. 58 Lori Breeden, “Transformative Occupation in Practice: Changing Media Images and Lives of People with Disabilities,” Occupation, Participation and Health 32, no. 1 (2012); Danny Woodburn and Kristina Kopić, The Ruderman White Paper on Employment of Actors with Disabilities in Television, Ruderman Family Foundation, July 13, 2016, www.rudermanfoundation.org/wp-content/uploads/2016/07/TV-White-Paper_final. final_.pdf. 59 Olivia Raynor and Katharine Hayward, The Employment of Performers with Disabilities in the Entertainment Industry (Los Angeles, CA: National Arts and Disability Center, 2005). 60 Raynor and Hayward, “Breaking into the Business.” 61 Lori Breeden, “Transformative Occupation in Practice: Changing Media Images and Lives of People with Disabilities,” Occupation, Participation and Health 32, no. 1 (2012): S21. 62 Breeden, “Transformative Occupation in Practice,” S20. 63 Ellis, Disability Media Work. 64 David H. Schwartz and Chris Hadley, “Disabled Filmmakers Breathe New Life into Storytelling through Web Series,” Huffington Post, February 5, 2016, www.huffingtonpost.com/david-h-schwartz/disabled-film makers-breat_b_9815188.html. 65 Rachel Semigran, “Comedian Shannon Devido on Being an Actor with a Disability & Being Yelled at by Billy Eichner,” Bustle, February 3, 2015, www.bustle.com/articles/62017-comedian-shannon-devido-onbeing-an-actor-with-a-disability-being-yelled-at-by-billy. 66 Mike Ervin, “Web Series Creator’s Novel Concept: Putting Disabled Actors in PWD Roles,” Independence Today, accessed August 24, 2017, www.itodaynews.com/2014-issues/12–2014-issue50/04-pwd-actors.htm. 67 Sean Miller, “Spinning a Web Series,” Back Stage—National Edition 53, no. 30 (2012): 14–15. 68 Sue Swinburne and Richard Fabb, “How Web Series Are Shaking Up Australia’s Screen Industry,” The Conversation, June 30, 2017, https://theconversation.com/how-web-series-are-shaking-up-australias-screenindustry-79844. 69 AACTA, “7th AACTA Awards Entries: Online Video or Series,” AACTA, accessed August 27, 2017, www.aacta.org/the-awards/7th-aacta-awards-entries/online-video-or-series.aspx. 70 Swinburne and Fabb, “How Web Series Are Shaking Up Australia’s Screen Industry.” 71 Adam Manuel, “Why the Web Series Is Such a Powerful Medium for Indie Filmmakers,” HuffPost UK, June 16, 2017, www.huffingtonpost.co.uk/adam-manuel/why-the-web-series-is-suc_b_17121046.html. 72 Elizabeth Ellcessor, “Very Special Webisodes: Web Series, Disability, and Cultural Accessibility,” Flow Journal, March 23, 2015, www.flowjournal.org/2015/03/very-special-webisodes. 73 Felicia Day, “Web Series: Four Things to Ask Yourself Before Starting,” XOXO Felicia, May 14, 2009, http://feliciaday.com/blog/web-series-4-things-to-ask-yourself-before-starting. 74 Angelica Mari, “Samsung Is Sued Over Poor Working Conditions in Brazil,” ZDNet, August 16, 2013, www.zdnet.com/article/samsung-is-sued-over-poor-working-conditions-in-brazil.

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Disability Media Work 75 David Barboza, “After Suicides, Scrutiny of China’s Grim Factories,” New York Times, June 6, 2010, www. nytimes.com/2010/06/07/business/global/07suicide.html?pagewanted=all. 76 Ananya Bhattacharya, “Apple Is Under Fire for ‘Excessive Overtime’ and Illegal Working Conditions in Another Chinese Factory,” Quartz, August 26, 2016, https://qz.com/767087/apple-is-under-fire-for-exces sive-overtime-and-illegal-working-conditions-in-another-chinese-factory. 77 Jack Qui, Goodbye Islave: A Manifesto for Digital Abolition (Urbana, University of Illinois Press, 2017). 78 Toby Miller, “The Price of the Popular Media Is Paid by the Effluent Citizen,” in Disability Media Studies, ed. Elizabeth Ellcessor and Bill Kirkpatrick (New York: New York University Press, 2017). 79 Ellis, Disability Media Work, also identifies the importance of further investigation into this topic, citing evidence of workers acquiring impairments in Mexican factories manufacturing television sets. 80 Miller, “The Price of the Popular Media Is Paid by the Effluent Citizen.”

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36 BOOKS AND PEOPLE WITH PRINT DISABILITIES Public Value and the International Disability Human Rights Agenda David Adair and Paul Harpur Introduction The World Blind Union calls blind and partially sighted people’s lack of access to books and other printed materials in accessible formats a global “book famine.” In the richest countries, less than 10 percent of published materials are accessible, while in developing countries, the figure is less than 1 percent.1 Technology is helping, however legal barriers perpetuate the book famine.2 Governments have framed the problem as a matter of how to manage rival rights claims by copyright holders and those seeking access. They respond to access requests by authorizing a limited number of institutions to make copies of copyrighted materials available to individuals with disabilities, who may then use adaptive technologies to gain access to titles covered by the exception. This ad hoc “exceptions paradigm” is inconsistent, costly, inefficient and slow to respond to demand from people with print disabilities.3 The exceptions paradigm is rejected by contemporary disability activists, who perceive it as a mutable governmental strategy of dispute management, not a neutral and rational recognition of limits set by technology, economics or even impairment.4 Rejecting individualistic definitions of disability, they urge governments to act in the public interest and intervene in the structural maintenance of policy-induced disablement, to ensure that the rights and interests of those without adequate access to educational and other cultural resources are prioritized in public policy formulation and decision-making. To date, the most promising results of this advocacy are innovations in the international copyright regime, notably the World Intellectual Property Organization’s (WIPO) Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled (the Marrakesh Treaty).5 The treaty entered into force on September 30, 2016, after attracting the required 20 signatories. The number rose to 70 after the European Union signed it in October 2018, to take effect on January 1, 2019.6 The Marrakesh Treaty promises to shift the balance struck between competing rights claims, in favor of people who are unable to read print media without audio technologies. Public and non-profit organizations are the main facilitators of access to useable content by vision-impaired people. Their activities in pursuit of this mission give programmatic form to the principles embodied in the changing governmental paradigm. This chapter therefore acknowledges changes in how cultural leadership by the public and non-profit sectors is theorized and

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practiced: developments that are concurrent with the new accommodations of the governmental responses to the book famine and the rise of the more assertive disability politics. Leadership in the sector increasingly derives its legitimacy and support from stakeholders, while its authority is exercised through trust and consensus-building. These sectoral changes have been developed internationally, in response to local and global conditions, but are perhaps most coherently theorized in the United States, in strategic management studies, under the rubric “public value.”7 A public value analysis would see public and non-profit organizations being effective in addressing the problem of the book famine to the extent that they can coordinate the values of their authorizers (strategic partners of varying kinds, including public agencies that resource and authorize their value-producing activities), and the expectations of those who derive direct and indirect benefits from these activities (ranging from vision-impaired individuals and groups who benefit directly from access, to communities and the broader society, who benefit more or less indirectly).8 These diverse benefits constitute the organizations’ public value. From this perspective, the recent innovations in the international copyright regime are significant changes in the organizations’ authorizing environments. In order to maximize their use as resources for increasing sociocultural participation, the organizations and their client-citizens must be able to demonstrate that the benefits created are not unambiguous and mutually excluding “private” and “public” goods, but exist in an interlinked value chain that stretches out from the individual to the whole society, from the intrinsic pleasures of reading, to the instrumental social and economic impacts that flow from reading becoming accessible to all.9 Making this case to authorizers involves affirming the principle that public and non-profit agencies exist in order to “make a positive difference in the individual and collective lives of citizens.”10 It also requires the rights-based definition of citizenship to be augmented with one that accommodates the social values of cultural participation and resourcing. This chapter sets out to identify potentially productive synergies between the changing international copyright regime, contemporary disability politics and the public and non-profit sectors that have been authorized and resourced to resolve the problem of the book famine. It begins by considering important shifts in how disability politics is theorized and practiced, before discussing participatory forms of citizenship and corresponding initiatives by public agencies to advocate and realize citizens’ cultural rights. The chapter acknowledges the Convention on the Rights of Persons with Disabilities (CRPD) as a significant development in the advancement of those rights, while also recognizing its limitations and noting how such obstacles have been theorized and notionally resolved in legal theory, if not in the “exceptions paradigm.” A more significant development discussed in the chapter is the Marrakesh Treaty. Australia signed the Marrakesh Treaty on June 23, 2014, to enter into force on September 30 2016.11 We use the Australian context as an example of obstacles and possible solutions for integrating the revised copyright laws into a public policy domain where consensus comes through consultative cultural leadership. The chapter concludes by synthesizing the issues it has raised and identifying an existing field of theoretical and practical resources that could resolve them.

The Social Model of Disability Politics The exceptions paradigm treats the market of uncapped copyright protections as the norm, and access by people with print disabilities as a relatively rare, and thus tolerable, exception that can be accommodated up until the point at which it destabilizes the market overall. Under this governmental regime, public and non-profit agencies are authorized to manage access using this market-prioritizing mechanism. Disability theorists and activists have long questioned attempts to use appeals to tolerance to advance the interests of people with disabilities. For example, Wendy Brown argues that the term “tolerance” identifies a situation where a divergence is morally 401

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repugnant, but endured under sufferance for a greater good.12 Brown observes that in most professional fields, “tolerance” refers to encounters with an undesirable element. In engineering or statistics, for instance, it is the point at which an impure factor creates a serious defect. In plant physiology, it is the point at which a substance becomes fatal to life. Tolerance, “involves managing the presence of the undesirable, the tasteless, the faulty—even the revolting, repugnant, or vile.”13 Disability theorists and activists consequently favor a social model of disability that sees little point in calling for tolerance, while leaving unaddressed the structural conditions that create and reproduce power imbalances and inequalities between people with different kinds and levels of ability.14 The social model of disability—or more properly, disablement—treats it in sociopolitical terms, not as being necessarily determined by technological limitations, the economic “bottom line” or individual impairment.15 From this perspective, universal design that gives full access is within reach,16 the technology is available to digitize existing works and it is even easier to ensure that all works sold now and in the future in electronic form are made accessible at relatively little cost. Consequently, the major access problems facing people with print disabilities are barriers created by active societal choices to prioritize the interests of copyright owners. The example of Amazon’s Kindle e-book reader illustrates this argument. When Amazon released the Kindle 2 in 2009, it included text-to-speech output that made it potentially accessible for persons with low vision and blindness. This was a remarkable advance for persons with print disabilities.17 The American Author’s Guild responded to the possibility of accessibility by urging its members to sign contracts blocking this potential capability, on the basis of it being a copyright infringement for a book to be read aloud by a machine, even in private contexts, unless the copyright owner grants permission.18 After 2011, Amazon opted to remove the audio features from subsequent Kindle models.19 This decision resulted in persons who rely on screen readers being disabled and excluded from using this popular e-book reader. In this case, individuals were not print disabled because of their low vision or other impairment, or because of technological limitations, but due to a decision by Amazon: an action that was mandated and legitimized by the current regulatory regime. Gerard Goggin refers to Amazon’s action as “one of the most scandalous examples in the world of digital books.”20 Despite the Amazon decision to curtail the capacity of persons with print disabilities to access e-books, it continued to market the Kindle to school districts and universities, which are major suppliers of e-book technologies to their students. Only after the National Federation of the Blind (NFB) led a campaign pointing to these organizations’ “obligation under federal law to purchase or deploy only accessible technology and content”21 did Amazon reverse its decision in 2016 and restore audio functionality via Bluetooth technology.22 In that year, the NFB announced that it had entered into an ongoing collaborative relationship with Amazon to resolve current access issues and avoid future ones. For its part, Amazon publicly reaffirmed the principle of equal access in digital learning resources used by educational institutions.23 Since disablement is not adequately accounted for by impairment, economic or technological limitations, much of the failure to ensure adequate levels of access can be attributed to a systematic lack of political will and imagination to make structural changes to the regulatory regime that creates the problem. By casting the major barriers to accessibility in these sociopolitical terms, disability activists have been able to draw attention to the deliberative forums in which public policy is created, and from where public and non-profit agencies and regulatory initiatives derive their authority and resources: forums making up part of the responsible organizations’ authorizing environments. By recasting the problem from disability to disablement, the social model of disability politics challenges organizational participants in these forums, and those whom they represent, to reconsider how economic, social and cultural factors can maximize, rather than limit, citizens’ abilities and opportunities to access and use published reading materials. 402

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Culture and Citizenship The multifaceted and mutable nature of citizenship was theorized in the mid-twentieth century by Thomas H. Marshall, who distinguished what he called its civil, political and social forms.24 Marshall’s initial identification of the typology was brief and his treatment of social citizenship has been criticized for focusing on rights, at the expense of a more active, socially dispersed and capacity-focused conception of citizenship,25 but the typology remains a key contribution to efforts to critically interpret and reconfigure the nexus of culture and citizenship. Mitchell Cohen describes Marshall’s account as embracing: civil citizenship (particularly the ideas of equality before the law and individual rights), political citizenship (particularly universal suffrage), and social citizenship (the notion that all members of a polity ought to enjoy and to share at least a basic level of socialeconomic and cultural well-being).26 As these understandings developed and spread, they elaborated and extended the institution of citizenship, in the process making it more active and thus rewarding and challenging, for governments and citizens alike. Current efforts to ensure that citizens with print disabilities have equality of access to published materials exemplify these ongoing attempts to build upon rights, so they are “practically enacted and realized through actual participation in the community.”27 Citizenship is not a finite resource diminished by extension and elaboration, but a dynamic institution over whose features citizens deliberate, in the process expressing, disputing and refining their common aspirations. As Marshall put it: There is no universal principle which determines what [a citizen’s] rights and duties shall be, but societies in which citizenship is a developing institution create an image of an ideal citizenship against which achievement can be measured and towards which aspiration can be directed. The urge forward along the path thus plotted is an urge towards a fuller measure of equality, an enrichment of the stuff of which the status is made and an increase in the number of those on whom the status is bestowed.28 Equality of access to the means of participating in the cultural life of society is an enduring theme in public policy and has been articulated at different levels and in varied stages of the policy process.29 American examples include the “Cultural Bill of Rights” written by Bill Ivey, former Chair of the US National Endowment for the Arts, in 2008. It proposes that, “citizens of a mature democracy possess a just claim to a cultural system that enables them to engage heritage and expand individual creative capacity.”30 In the Australian context, Creative Australia, a peak national cultural policy document that was developed after years of wide-ranging stakeholder consultations, likewise articulated this aspiration in the second of its five main goals: “Ensure that government support reflects the diversity of Australia and that all citizens, wherever they live, whatever their background or circumstances, have a right to shape our cultural identity and its expression.”31 At the international level, Article 27(1) of the 1948 United Nations Universal Declaration of Human Rights states: “Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.”32 Continuing this theme, Article 2(7) of the 2005 United Nations Educational, Scientific and Cultural Organization (UNESCO) Convention on the Protection and Promotion of the Diversity of Cultural Expressions states that, “Equitable access to a rich and diversified range of cultural expressions from all over the world and access of cultures to the means of expressions and dissemination constitute important elements for enhancing cultural diversity and encouraging

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mutual understanding.”33 Since the mid–twentieth century, these and numerous other national and international initiatives have sought to build equality of access and opportunities for cultural participation into citizenship.

The CRPD A significant moment in the history of citizenship came when the CRPD was adopted by the United Nations and rapidly ratified by a number of member states.34 The CRPD is the declaration of ability equality for persons with disabilities and sweeps in a new disability human rights paradigm.35 The CRPD begins by “[recognizing] the importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms.”36 Importantly, it distinguishes itself from earlier initiatives by drawing on the social model of disability to frame the problem of lack of access37 and by obliging state signatories to solve it by adopting proactive laws and policies.38 Article 21 requires member states to: Take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice.39 However, the provision’s impact is then somewhat diluted by requirements to only “[urge] private entities”40 and “[encourage] the mass media”41 to make information and services available in accessible formats: qualifications that fall short of the more assertive agendas of the advocates of the social model of disability politics. If the CRPD baulks at compelling the private sector to act, the right to education in Article 24 nevertheless provides citizens with disabilities with a strong right to education, “to facilitate their full and equal participation in education and as members of the community,” while Article 27(1) entitles them to have the “opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.”42 Most relevantly, in Article 30, the CRPD directly addresses rights to participate in culture, recreation and leisure. Article 30(1) entitles persons with disabilities to “take part on an equal basis with others in cultural life,” and requires that member states “shall take all appropriate measures to ensure that persons with disabilities … [e]njoy access to cultural materials in accessible formats.”43 Here “cultural material” can be interpreted widely to include literature, artefacts, radio, screen and television productions, performance and visual arts.44 Article 30(3) goes further, directly addressing potential conflicts with copyright: “States Parties shall take all appropriate steps, in accordance with international law, to ensure that laws protecting intellectual property rights do not constitute an unreasonable or discriminatory barrier to access by persons with disabilities to cultural materials.” In this way, the CRPD affirms access to cultural materials as a human right in international law, as first codified in Article 15 of the International Covenant on Economic, Social and Cultural Rights, which entered into force in 1976.45 Taken together, these provisions impose a strong positive obligation on member states to ensure persons with disabilities enjoy equal access to cultural goods and services, including to print material protected by copyright.46 It should be noted, however, that this agenda remains seriously curtailed by the refusal of the government of the United States—the largest producer of published materials—to ratify the CRPD. This lack of political will demonstrates that while international human rights initiatives create legal norms, a rights discourse does not resonate equally or in the same ways in all national jurisdictions. 404

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The American jurist, legal theorist and political philosopher Martha Albertson Fineman attributes the reluctance of the US government to curtail private interests to the pervasive influence of how the human subject is theorized in liberal philosophy: a subject with presumed attributes of autonomy, personal responsibility and self-reliance. Fineman writes that this has shaped “our [American] economic, legal, and political principles” and that it underpins a contractual vision of social organization that restrains the state from “interfering with the liberal subject’s entitlements to autonomy and liberty.”47 As her alternative, Fineman theorizes a “vulnerable subject”—one existing in a “state of constant possibility of harm”—and uses this potential for vulnerability to advocate for a paradigmatic shift in conceptualizing the power of state institutions to empower those who are vulnerable: institutions “that are created and maintained under the legitimating authority of the state, since the ultimate objective of a vulnerability analysis is to argue that the state must be more responsive to, and responsible for, vulnerability.”48 Fineman’s call for a paradigm shift resonates with the social model of disability/disablement, Marshall’s social form of citizenship and the distinctive mandate of public and non-profit organizations affirmed by public value theory and practice. Changes to the international copyright regime are inputs into this mix and its potential to address the problem of the book famine.

The Marrakesh Treaty If the CRPD began the process of unsettling the exceptions paradigm, a more important development occurred in 2013, when the Marrakesh Treaty was opened for signing. It significantly increases obligations contained within international IP laws and reflects a new disability paradigm.49 The impact of this paradigm shift can be illustrated by the fact that the WIPO,50 an organization established and committed to restricting access, in the face of staunch opposition from copyright lobbyists, adopted the Marrakesh Treaty.51 By embedding disability rights within an international copyright law instrument under the auspices of WIPO, it constitutes a significant change in the authorizing environments of organizations with public mandates to resolve the problem of the book famine. The paradigm shift is also being felt in domestic law reforms. The Marrakesh Treaty Implementation Act (USA) in October 2018 is one of the more significant domestic developments. It will open up the vast resources of the United States disability digital libraries to global sharing.52 The following are particularly important features of the Marrakesh Treaty. Some conditions and obstacles vary between jurisdictions, while others are more common. Those presented here with comments on their applicability to the Australian context, are included to demonstrate how one signatory state brought its own regulatory regime into compliance with the Treaty. First, the Marrakesh Treaty requires signatories to adopt copyright exceptions for the nonprofit creation and distribution of accessible versions of works for the benefit of people with print disabilities.53 This provision requires all signatories to bring their copyright legislation into line with the standard already attained in developed countries. The Marrakesh Treaty is one of the rare international instruments that mandate, rather than merely permit, exceptions to copyright holders’ exclusive rights. It thus imposes a ceiling on the strength of copyright interests relative to others.54 The Australian Copyright Amendment (Disability Access and Other Measures) Bill 2017 (Cth) was passed on Thursday June 15, 2017.55 The amended Act56 made Australian copyright law more compliant with this requirement by introducing a single fair dealing exception to replace the more complex statutory licence system.57 Second, the Marrakesh Treaty requires signatories to allow organizations assisting people with print disabilities to either make copies available to similar organizations in other signatory countries, or distribute the copies directly to disabled individuals in those countries.58 WIPO is also required to establish information-sharing procedures to enhance cooperation between member 405

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states, by establishing a voluntary register of institutions assisting people with print disabilities.59 These provisions reduce the gross inefficiency of the system that requires institutions in each country to digitize their own accessible copies of each work. The provisions allow economies of scale, by enabling institutions in some countries to provide works directly to beneficiaries in other countries. Importantly, comparatively well-funded organizations in some countries are allowed to assist people, particularly in developing countries, who do not have strong institutional support.60 While the Copyright Amendment (Disability Access And Other Measures) Act 2017 (Cth) Schedule 1 introduced a new fair-dealing exemption for the purpose of access by persons with a disability, as well as new powers for organizations that help this group, the new sections 113E and 113F of the Copyright Act 1968 (Cth) do not facilitate the international exchange of accessible works. Similarly, the Schedule 1 exemptions, which facilitate access for the print disabled to sound recordings and cinematograph film, found in the amended section 248A(1) paragraphs (d) and (e), do not enable the international exchange of works made accessible to the print disabled. Accordingly, a further change to Australian copyright law will be required to enable institutions assisting people with print disabilities to import and export accessibly formatted copies. Finally, the Marrakesh Treaty requires states to introduce exceptions to their anticircumvention schemes (where applicable) to ensure that those schemes “[do] not prevent beneficiary persons from enjoying the limitations and exceptions”61 provided by the Treaty. This is particularly important for enabling people with disabilities (or their representatives) to circumvent digital rights management systems (digital locks on copyrighted materials) placed on e-books and other works, so they can utilize adaptive technologies to gain access. The Australian Copyright Act 1968 (Cth) s 116AN(9) enables certain technical measures to be circumvented, including where it benefits the print disabled.62 Arguably more robust exemptions are required to empower third parties to support persons with disabilities to circumvent digital rights measures, where such measures are used in ways that prevent persons with print disabilities from consuming copyright material to which they have lawful access rights. The Marrakesh Treaty thus makes important contributions to improving access for people with print disabilities worldwide. Effectively, it requires developing countries to adopt the limited exceptions paradigm currently used by developed countries, enabling ad hoc digitization and other measures to provide access to people with print disabilities. For people in the developing world, where the book famine is most acute, this is an important advance. For Australia and other states where access is somewhat better, the measures needed to comply with most of the Marrakesh Treaty’s terms are not onerous, but neither are they complete in the absence of a consensus for change at all levels of public policy. Upon ratification by the United States, the Marrakesh Treaty will enable access to several hundred thousand English and Spanish language books. As of 2018, 670,000 titles had been digitized by volunteers and held by the non-profit e-library Bookshare.org,63 as well as similar collections by other, smaller institutions. In addition, there is the collection of the HathiTrust, a non-profit strategic partnership of university research libraries. In return for access to millions of hard copy books from the partner libraries, Google has made the results of its mass digitization project available to the Hathitrust.64 Using primarily the Google Books digitization project, the Hathitrust e-library held, in late 2018 just under 17 million total volumes and over 8 million book titles.65 As the Google Books digitization process is slowing down, due to the legal difficulties discussed below, the flow of new titles to this universal library is likely to diminish. Nevertheless, following Google’s successful defence of the right to continue its book digitization project, under US Fair Use law,66 and the US Supreme Court’s decision to decline hearing a challenge from the Authors Guild,67 the legal standing of digital libraries is more secure. Conceivably then, the Marrakesh Treaty and the affirmation of US Fair Use law may eventually 406

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constitute a significant expansion of what Marshall called the “stuff” of citizenship. They are not, by themselves, sufficient to solve the problem of the book famine, but are an important component and driver of that process. The major short-term challenges to expanding equality of access to print materials are to begin the global process of digitizing existing materials and ensure that new works are made accessible from the outset. The Marrakesh Treaty does not require signatories to undertake these activities through centrally planned regulation of supply by the public sector. Neither is a market-led response viable, considering that digitizing existing works on the global scale necessary will not be financially cost-effective and that Google’s successful Fair Use defence of its book digitalization project was won on the grounds that it creates significant public good benefits, not on commercial grounds.68 The Marrakesh Treaty does, however, assist by providing a legal framework for making new methods of support as efficient as possible, through removing national barriers to the movement of accessible print materials. More importantly, it is a resounding victory for disability advocates and people with print disabilities and sends a strong international signal that the authority until now granted to the limited exceptions paradigm by the legislative and other representatives of citizens, is in the process of being renegotiated.

Conclusion Non-profit organizations public mandated to address the problem of the book famine have already entered into mutually beneficial strategic partnerships with one another, as well as with private sector entities willing to contribute to that public mission. The NFB/Amazon partnership and the partnership between the HathiTrust consortium of university research libraries and Google are but two examples of how to “make a positive difference in the individual and collective lives of citizens.”69 In order to expand their reach and become more effective and sustainable, these and other similarly mandated organizations must build trust and consensus in their authorizing and task environments, around initiatives to realize community-held principles of equity and fairness.70 The term “public value” has two meanings; it refers to what citizens value, but also to what adds value to the public domain in which citizens’ capacities and attributes—including their rights—are acquired and exercised.71 For a public or non-profit organization to maximize valueproduction, it needs trusting relationships with its authorizing environment, as they are conditions for it being politically mandated and resourced to champion citizen rights and engage individuals and communities in designing and delivering appropriate capacity-building activities.72 The authorizing environments of those organizations that are seeking to solve the problem of the book famine have begun to change in ways deserving recognition and support, but if advocates for the new international disability human rights agenda are to take advantage of these developments and build on them, there must be greater public recognition that the beneficiaries of nonprofit value-production are not only individuals, but the communities and wider society in which they live.73 This necessitates advancing the new disability human rights agenda on multiple fronts, including changing the governmental rationale for increasing access to useable reading materials, from one that tolerates inconvenience and conceives of efforts to end the book famine as costs to be borne by society for the benefit of individuals, to one that sets out to create value chains that link individual, community and society-wide benefits—and affirms this paradigm change as an expression of citizens’ collective aspirations that is worthy of support. The theory and practice of public value strategic management were designed for such purposes. They have been operating in numerous public and non-profit contexts for two decades now, thus offering best practice cases and benchmarking opportunities for the task of making inroads into solving the problem of the book famine.74 407

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Notes 1 World Blind Union, “Millions of People are Denied Access to Books and Printed Materials—WBU Press Release for World Book and Copyright Day,” press release, April 23, 2016, www.worldblindunion.org/ English/news/Pages/Millions-of-People-are-Denied-Access-to-.aspx. 2 Paul Harpur and Nicolas Suzor, “The Paradigm Shift in Realising the Right to Read: How eBook Libraries are Enabling in the University Sector,” Disability and Society 29, no. 10 (2014): 1658. 3 Paul Harpur, “Ensuring Equality in Education: How Australian Laws are Leaving Students with Print Disabilities Behind,” Media and Arts Law Review 15, no. 1 (2010): 70; Paul Harpur and Rebecca Loudoun, “The Barrier of the Written Word: Analysing Universities’ Policies to Include Students with Print Disabilities and Calls for Reforms,” Journal of Higher Education Policy and Management 33, no. 2 (2011): 153. 4 Carol H. Weiss, “Research for Policy’s Sake: The Enlightenment Function of Social Research,” Policy Analysis 3, no. 4 (1977): 533. 5 World Intellectual Property Organization, “European Union Joins WIPO’s Marrakesh Treaty, Greatly Expanding Coverage,” press release, October 1, 2018, www.wipo.int/pressroom/en/articles/2018/art icle_0008.html. 6 Catherine Saez, “EU Joins WIPO Marrakesh Treaty for Visually Impaired, Boosts Available Books,” Intellectual Property Watch, October 1, 2018, www.ip-watch.org/2018/10/01/eu-joins-wipo-marrakesh-treatyvisually-impaired-boosts-available-books. 7 Mark H. Moore, Creating Public Value: Strategic Management in Government (Cambridge, MA: Harvard University Press, 1995). 8 Mark H. Moore and Gaylen Williams Moore, Creating Public Value Through State Arts Agencies (Minneapolis, MN: Arts Midwest and the Wallace Foundation, 2005), 15–17. 9 Elizabeth H. Ondaatje, “A New Approach to Discussing the Benefits of the Arts,” in Dancing With Different Partners: Proceedings from the Conference, ed. Mark Moore, Ann Stone and Elizabeth H. Ondaatje, October 17–20 (Cleveland, OH: Grantmakers in the Arts, 2004), www.giarts.org/article/new-approach-dis cussing-benefits-arts. 10 Moore and Moore, Creating Public Value Through State Arts Agencies, 15. 11 World Intellectual Property Organization, “Treaties and Contracting Parties,” accessed November 25, 2018, www.wipo.int/treaties/en/remarks.jsp?cnty_id=10853C. 12 Wendy Brown, Regulating Aversion: Tolerance in the Age of Identity and Empire (Princeton, NJ: Princeton University Press, 2006), chap. 2. 13 Brown, Regulating Aversion, chap 2. 14 Lee Ann Basser and Melinda Jones, “The Disability Discrimination Act 1992 (Cth): A Three-Dimensional Approach to Operationalising Human Rights,” Melbourne University Law Review 26, no. 2 (2002): 254, 262. 15 Tom Shakespeare, “Cultural Representation of Disabled People: Dustbins for Disavowal?” in Disability Studies: Past Present and Future, ed. Len Barton and Michael Oliver (Leeds, UK: Disability Press, 1997), 233. 16 CRPD Art. 2 defines “Universal design” as the “design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.” 17 Paul Harpur, Discrimination, Copyright and Equality: Opening the E-Book for the Print Disabled (Cambridge, UK: Cambridge University Press, 2017), 28–30. 18 “National Federation for the Blind Responds to Authors Guild Statement on the Amazon Kindle 2,” February 12, 2009, https://nfb.org/node/1184. 19 National Federation of the Blind, “Make Kindle E-Books Accessible,” August, 2015, https://nfb.org/ kindle-books. 20 Gerard Goggin, foreword to Discrimination, Copyright and Equality: Opening the E-Book for the Print Disabled, by Paul Harpur (Cambridge, UK: Cambridge University Press, 2017), xiv. 21 National Federation of the Blind, “Make Kindle E-Books Accessible.” 22 Madeline Farber, “Amazon’s New Kindle Is Bringing Back This Key Feature for the Blind,” Fortune, June 24, 2016, http://fortune.com/2016/06/23/amazon-new-kindle-accessibility-blind. 23 National Federation of the Blind, “National Federation of the Blind and Amazon Join Forces to Improve Accessible Reading Experiences for Blind and Low-Vision Students,” media release, March 2, 2016, https://archive.nfb.org/national-federation-blind-and-amazon-join-forces-improve-accessible-reading-experi ences-blind-and. 24 Thomas H. Marshall, “Citizenship and Social Class,” in Inequality and Society, ed. Jeff Manza and Michael Sauder (New York: W. W. Norton, 1950, 2009), 148–154. 25 Will Kymlicka and Wayne Norman, “Return of the Citizen: A Survey of Recent Work on Citizenship Theory,” Ethics, 104, no. 2 (Jan. 1994): 355.

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Books and People with Print Disabilities 26 Mitchell Cohen, “T. H. Marshall’s ‘Citizenship and Social Class,’” Dissent Fall (2010), www.dissentmaga zine.org/article/t-h-marshalls-citizenship-and-social-class. 27 Stuart Hall and David Held, “Citizens and Citizenship,” in New Times: The Changing Face of Politics in the 1990s, ed. Stuart Hall and Martin Jacques (London: Lawrence & Wishart, 1989), 175. 28 Thomas H. Marshall, “Citizenship and Social Class,” 149–150. 29 Robert Hewison and John Holden, The Right to Art: Making Aspirations Reality (London: Demos, 2004). 30 Bill Ivey, Arts, Inc.: How Greed and Neglect Have Destroyed Our Cultural Rights (Berkeley: University of California Press, 2008), www.ucpress.edu/content/chapters/10151.ch01.pdf. 31 Commonwealth of Australia, Creative Australia: National Cultural Policy (Canberra: Commonwealth of Australia, 2013). 32 United Nations, The Universal Declaration of Human Rights (Paris: United Nations, 1948), art. 27(1), www.un.org/en/universal-declaration-human-rights/index.html. 33 UNESCO, Convention on the Protection and Promotion of the Diversity of Cultural Expressions (Paris: UNESCO, 2005), art. 2(7). 34 Eve Hill and Peter Blanck, “Future of Disability Rights Advocacy and ‘The Right to Live in the World,’” Texas Journal on Civil Liberties and Civil Rights 15, no. 1 (2009): 1–31; Gerard Quinn, “Resisting the ‘Temptation of Elegance’: Can the Convention on the Rights of Persons with Disabilities Socialise States to Right Behaviour?” in The UN Convention on the Rights of Persons with Disabilities: European and Scandinavian Perspectives, ed. Oddný Mjöll Arnardóttir and Gerard Quinn (Leiden: Brill, 2009), 215. 35 Paul Harpur and Michael Ashley Stein, “Universities as Disability Rights Change Agents,” Northeastern University Law Review 10, no. 2 (2018): 542–582. 36 Convention on the Rights of Persons with Disabilities, opened for signatures March 30, 2007, 46 ILM 443 (in force May 3, 2008), Preamble, paragraph (v). 37 See, for example, the Preamble to the Convention on the Rights of Persons with Disabilities, which recognizes that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others”; Convention on the Rights of Persons with Disabilities, opened for signatures March 30, 2007, 46 ILM 443 (in force May 3, 2008), Preamble, paragraph (e). 38 Paul Harpur, “The Convention on the Rights of Persons with Disabilities and Australian AntiDiscrimination Laws: What Happened to the Legal Protections for People Using Guide or Assistance Dogs?” University of Tasmania Law Review 29, no. 1 (2010): 49–77. 39 Convention on the Rights of Persons with Disabilities, art. 21. 40 Convention on the Rights of Persons with Disabilities, art. 21(c). 41 Convention on the Rights of Persons with Disabilities, art. 21(d). 42 Convention on the Rights of Persons with Disabilities, art. 24 and 27. 43 Convention on the Rights of Persons with Disabilities, art. 30(1). 44 “Cultural material” is broadly defined in a range of international agreements. For example: Convention for the Safeguarding of Intangible Cultural Heritage, signed October 17, 2003, MISC/2003/CLT/CH/14 (entered into force April 20, 2006); Hague Convention for the Protection of Cultural Property in the Event of Armed Conflict, signed December 31, 1954, 249 UNTS i-3511 (entered into force August 7, 1956). 45 International Covenant on Economic, Social and Cultural Rights, opened for signature December 16, 1966, 993 UNTS 3 (entered into force January 3, 1976); see further Janet E. Lord and Michael Ashley Stein, “Social Rights and the Relational Value of the Rights to Participate in Sport, Recreation, and Play,” Boston University International Law Journal 27 (2009): 249–281. The Convention responds to traditional models, situates disability within a social model framework and sketches the full range of human rights that apply to all human beings, all with a particular application to the lives of persons with disabilities. Such an understanding of disability rights sharply contrasts with earlier human rights instruments, which were neither disability rights based nor social model oriented. 46 Archbishop Silvano Tomasi, the Vatican’s permanent observer to UN agencies has cited both the CRPD and John Paul II’s encyclical Laborem Exercens to support calls for copyright reforms to address the book famine: Clare Myers, “Blind People Are Suffering from ‘Book Famine’, says Vatican Official,” Catholic Herald (online), June 21, 2013, www.catholicherald.co.uk/news/2013/06/21/blind-people-are-sufferingfrom-book-famine-says-vatican-un-envoy. 47 Martha Albertson Fineman, “The Vulnerable Subject: Anchoring Equality in the Human Condition,” Yale Journal of Law and Feminism 20, no. 1 (2008): 10–11. 48 Fineman, “The Vulnerable Subject,” 13. 49 Treaty to Facilitate Access to Published Works, art. 18.

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50 WIPO General Assembly, Proposal of Argentina and Brazil for the Establishment of a Development Agenda for WIPO, 31st session, 15th extraordinary, WO/GA/31/11 (August 27, 2004). 51 Paul Harpur and Nicolas Suzor, “Copyright Protections and Disability Rights: Turning the Page to a New International Paradigm,” University of New South Wales Law Journal 36, no. 3 (2013): 745. 52 Paul Harpur and Michael Ashley Stein, “The Impact of the Marrakesh Treaty Outside the Global North,” in Accessible Technology and the Developing World, ed. Michael Ashley Stein and Jonathan Lazar (London: Oxford University Press, forthcoming). 53 Treaty to Facilitate Access to Published Works, art. 4. 54 Henning Grosse Ruse-Khan, “Time for a Paradigm Shift: Exploring Maximum Standards in International Intellectual Property Protection,” Trade, Law and Development 1, no. 1 (2009): 56, 70; Ruth L Okediji, International Copyright System: Limitations, Exceptions and Public Interest Considerations for Developing Countries (Geneva: International Centre for Trade and Sustainable Development, 2006), 6, www.iprsonline.org/uncta dictsd/docs/ruth%202405.pdf. 55 Smartcopying, “Copyright Amendment (Disability Access and Other Measures) Bill 2017,” accessed November 26, 2018, http://smartcopying.edu.au/copyright-law-reform/historical/copyright-amendment(disability-access-and-other-measures)-bill-2017. 56 Copyright Amendment (Disability Access and Other Measures) Act 2017 (Cth), accessed November 26, 2018, www.legislation.gov.au/Details/C2017A00049. 57 Copyright Act 1968 (Cth) Part VB. 58 Treaty to Facilitate Access to Published Works, art. 5 (export) and art. 6 (import). 59 Treaty to Facilitate Access to Published Works, art. 9. 60 James Love, “Disney, Viacom and Other MPAA Members Join Book Publishers to Weaken a Treaty for the Blind,” Huffpost, April 23, 2013, www.huffingtonpost.com/james-love/disney-viacom-and-otherm_b_3137653.html. 61 Treaty to Facilitate Access to Published Works, art. 7. 62 See for discussion Paul Harpur, Discrimination, Copyright and Equality: Opening the E-Book for the Print Disabled (Cambridge, UK: Cambridge University Press, 2017), 106–120. 63 Bookshare.org, “Who We Are,” accessed November 25, 2018, www.bookshare.org/cms/about. 64 Barry Sookman, “The Google Book Project: Is It Fair Use?” Journal of the Copyright Society U.S.A. 61, no. 3 (2014): 485–515. 65 HathiTrust.org, “Statistics and Visualizations,” accessed November 25, 2018, www.hathitrust.org/statistics_ visualizations. Note that these books have been scanned, but have not necessarily undergone Optical Character Recognition (OCR) and error checking; significant additional work may be required to make these books accessible. 66 Authors Guild, Inc. v. Hathitrust, 902 F. Supp. 2d 445 (SDNY, October 10, 2012). 67 David Kravets, “Fair Use Prevails as Supreme Court rejects Google Books Copyright Case,” ARS Technica, April 19, 2016, https://arstechnica.com/tech-policy/2016/04/fair-use-prevails-as-supreme-court-rejectsgoogle-books-copyright-case. 68 Mathew Ingram, “Google’s Victory in Book-Scanning Case Is a Huge Win for Fair Use,” Fortune, October 16, 2015, http://fortune.com/2015/10/16/google-fair-use. 69 Moore and Moore, Creating Public Value Through State Arts Agencies, 15. 70 John Alford and Janine O’Flynn, “Making Sense of Public Value: Concepts, Critiques and Emergent Meanings,” International Journal of Public Administration 32, no. 3–4 (2009): 173. 71 John Benington, “From Private Choice to Public Value?” in Public Value: Theory and Practice, ed. John Benington and Mark H. Moore (Basingstoke, UK: Palgrave Macmillan, 2011), 42–43. 72 David Adair, “‘Genuine Mutual Benefits’: A Public Value Account of Arts Community Engagement Programs as Core Business,” Asia Pacific Journal of Arts and Cultural Management 11, no. 1 (2014): 14–27. 73 Moore, Stone and Ondaatje, “A New Approach to Discussing the Benefits of the Arts.” 74 See Adair, “‘Genuine Mutual Benefits.’”

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INDEX

#107 Days 267 AAC see augmentative and alternative communication (AAC) Abdulah, Fatuma 185 Abilities 333, 358 ABILITY Magazine 358 able-bodiedness: actors 81–82, 83–84, 88–89; older women 82–83; portrayed as normal 14, 17–18, 19; sports coverage 102–103 AbleGamers Foundation 249 ableism: in advertising 56–57; challenging perceptions 373–374; citizen journalism 205; Donald Trump 391–392; “normate reductionism” 52; older adults and 78–79; in political cartoons 123; technology and 307 Abou-Zahra, Shadi 246–247 Abreu, Silvio de 209–210 abuse 239 Academy Awards 81–83, 164, 392 Access Program for People with Disabilities (APPD) 159 access services 295–296, 299–302 accessibility: of books and print media 371–372, 400–407; digital media 243–250, 252–260; of infrastructure 30; social media 268–269; video-making 200–201; video-on-demand (VOD) services 295–296, 298–302; websites 351 Accessible Media Inc. (AMI) 206–207 Accessible Stall 351 accommodations xxiv, 256, 389–390 activism: Africa 171; digital 189, 194–197; social media and 266–267 activist subgenre of disability documentary films 63 activity-centered life hacks 311–312 actors: able-bodied actors 81–82, 97–98, 392; with disabilities in principal roles 92–95, 226, 392; with disabilities in web series 392–394; employment

393; impact of stars with disabilities 89–90; older women 82–83 Actress Defying Age and Ageism Award 78 Ad Council 343–344 Adair, David: chapter by 400–410; works by xv Adam, Seth 344 Adams, Rachel 89 Adjusting the Picture 389–390 advertising: changing social attitudes 215–216; consumer-generated media 349–350; definition 341–342; diversity representation in 343–346; Down syndrome 211–212; economic impact 342–343; inspiration porn 346–347; online experiences 351; realistic portrayals 215–216, 348–349; shifting nature of 342; social media 350–351; supercrip narratives 347–348; women with disabilities 50–56 Advertising & Disability 351 advocacy 333–336, 377–385 advocacy journalism 332, 357–364 Advocado Press 2 aesthetic disqualification 88 affordability 199, 286–287, 298 affordance theory 307–308 Afghan Landmine Survivors’ Organization (ALSO) 179–180 Afghanistan 177, 178–180 Africa: African Youth with Disability Network (AYWDN) 190–192, 193–194; changing representations 175–177; digital activism 194–197; disability and news media 169–172; disability in 193–194; ICT in 192–193; narratives shaping disability stories 173–174; news media workers’ economy 172–173 African Youth with Disability Network (AYWDN) 190–192 Against All Odds 286 ageism 78, 79, 81, 83

411

Index

agency 151, 225–226 Ahmadinejad, Mahmoud 127 Alive Inside 84 Alliance for Inclusion in the Arts 216 allies 204, 335 Almeida, Patricia, chapter by 209–219 Alper, Meryl: chapter by 275–284; citations 261, 262, 325; works by xv ALS 84–85 ALS Ice Bucket Challenge 349–350 Alzheimer’s disease 79–81 Amazon 402, 407 American Association of Advertising Agencies 344–345 American Sign Language 91–92, 222 Americans with Disabilities Act (ADA) 155, 245, 253–254, 257, 390 Amman, Johann Conrad 222 amputees 105, 106, 109 Anderson, Stephanie 390 Annenberg Inclusion Initiative 216 Anner, Zach 94 anti-discrimination legislation 387–388, 390 anxiety 95 Apple 253, 348 The Arc and the Dove 333 Ardorno, Theodor 151 Argall, Brenna 321–322 “Armchair Army” (Virtual March 26 March 2011) 379–380 Arnold, William 79 arts research 370–373 Ashley X case 90 ASLWrite 222 assemblage, disability as 368–370 assistive technology 27, 307–314 Association for Comprehensive Empowerment of Nigerians with Disabilities (ASCEND) 171 Association for Education in Journalism and Mass Communication (AEJMC) 2 Association of National Advertisers (ANA) 345–346 Association of Parents and Friends of the Exceptionals (APAE) 211 asylums 36, 45 Atkin, Douglas 349 Atos Games 383 Attitude Foundation 216 audio description 259, 269, 286, 295–296, 299–302 augmentative and alternative communication (AAC): definition 276–278; The Theory Of Everything 278–282 Augustus, Robert Arnold 222 AUR (robotic lighting assistant) 322–323 Australia: advertising 346; copyright 405–406; critical disability studies 38; Indigenous peoples with disability 35–36, 38–45; media workers with disabilities 388; news media and the future 45–46; news media representations 356; Paralympic

athletes 105–107; print news media and minority groups 36–38; video-on-demand (VOD) services 295–302; web accessibility 254 Australian (newspaper) 36 Australian Broadcasting Corporation (ABC) 299, 356, 358–359, 361–364, 388 authentic representation: actors with disabilities 92–95; disability rights and 215–216; influence of news stories 90–92; reality TV 95–96; reversed roles 226; on television 88–90, 96–98; television 392 Authoring Tool Accessibility Guidelines (ATAG 2.0) 269 autonomous assistive robots 317–318, 320 autonomy 319–320 Avatar 139 avatars 223 awareness campaigns 211–212 Ayvazoglu, Nalan R. 108 Azimi, Amina 178–180 Bad Cripple 358 bad taste 132–133 Badger, David 357 Baloyi, Rhulani 286 Bankofier, Todd 351 Barnes, Colin 54, 122 Baron, Lawrence 141 barter-reuse-share life hacks 312 Bartholomy, Jonathan, chapter by 59–66 Baum, Bruce 131, 133 Baumbach, Noah 67 beat journalism 329–338 Beaulac, Pierre-Olivier 226 beauty standards 50–51 Bébian, Auguste 221–222 Bedding Out 267 Bemis, Beatrice 211 Bemis, George W. 211 Bendukurthi, Nookaraju: chapter by 23–34; works by xvi Bennett, Clay 127 Berdy, Sean 91–92 Bertling, Christoph 102, 108 Berube, Michael 16 Bezanson, Kya, chapter with 158–168 blindness 89, 127, 252–260 blogs 235–236, 308–309, 351, 358, 359–361 Bloom, Rachel 95 bodies 50–57, 368–370 Bodies of Film Club 158–166 body image standards 50–51 Böhlen, Marc 320 Bolt, David 50, 52, 57 Bong, Way Kiat 270 books 371–372, 400–407 Bookshare.org 406 Borcherding, Bria 108

412

Index “Born Risky” advertisement 54–55 Born This Way 96 Boudreau, Dennis 269 Bould, Mark 138 Boulton, Mary 51 Bourdieu, Pierre 367–368 Bove, Linda 92, 93 Bowman, Paul 151 Boyd, Danah M. 264–265 Bradshaw, Peter 79 Braverman, Michael 93 Brazil: inclusive education 210–212; Paralympic athletes 104–105, 110; telenovelas 209–210; unsafe work practices 395 Breaking Bad 93, 97 Breathing Lessons: The Life and Work of Mark O’Brien 59, 62–64, 65–66 Breeden, Lori 393 bricolage life hacks 310–311 British Broadcasting Corporation (BBC): access services 301–302; charter and funding 358–360; Disabling Prejudice: Attitudes Towards Disability and its Portrayal on Television 387–388; Ouch 384 broadband 295, 298, 299 Broadcasting Corporation of Oyo State (BCOS) 171 Broken of Britain 381–382, 383 Brown, Steve 133 Brown, Wendy 401–402 “brown envelope syndrome” 171–172 Bruce, Toni 102–103 Bruns, Axel 204 Bucher, Taina 265, 270 Buckley, Cara 85 Bulletin 36, 37 Bullimore, Kim 37 Burke, Chris 93 Burns, Len 234 Burns, Shawn, chapter by 356–366 Burton, Christian, chapter with 158–168 Butler, Octavia E. 143–144 Buysse, Jo Ann M. 108 Byrd, Keith 89 Callahan, John 132 Cameron, James 139 Canada 2, 370–375 #CanadiansWithDisabilitiesAct 333 CAPTCHA 268 captioning 259, 269–270, 286, 296, 299–300, 302 care robots 317–318, 320, 323–324 Carebot (Gecko Systems) 317, 320, 323–324 Careless, Sue 357 Care-o-bot (Fraunhofer) 317, 320, 323–324 Carey, James 123, 129, 342 Carlos, Manoel 212, 215 Carter-Long, Lawrence xxiii–xxiv, 95, 351

cartoons: as cultural communication 123–124; disability tropes in 122–123, 124–129, 132–133; the power of metaphor 129–132 Casual Day 286 catch-up television 296–297, 299–300 Center for Breaking Away 234 cerebral palsy 94 C’est tombé dans l’oreille d’une Sourde (It Fell on Deaf Ears) 220, 221 Chadwick, Patricia, chapter by 177–189 Chambers, Scott 132 Chandler, Eliza: as director 372–373; chapter by 367–376 Change.org 377, 378 Channel 4 54–55 Chen, Weiqin 270 Children of a Lesser God 392 China: media creators 180–184; representations of disability 177; social media 270; unsafe work practices 395 Chivers, Sally: chapter by 78–87; works by xvi Christensen, Clayton 295 Christopher, Warren 127, 130 cinematography 71 Cintra, Flavia 215 citizen journalism 192, 194–195, 203–204 citizenship 401, 403–404 Clark, Andrean 222 Clinton, Bill 127, 130 Clogston, John 24, 173, 335 close-up shots 70–71 codes of conduct 238–239 Coeckelbergh, Mark 322–323 Cohen, Dan 84 Cohen, Mitchell 403 Cohen-Greene, Cheryl 59, 60–61, 63–65 Coklyat, Bojana xxv Cole, Jennifer, chapter by 233–242 Cole, Kenneth 56–57 collaboration with robots 321–322 Collins, Cat 348 colonization: Australia 35–36; definition 35; Indigenous peoples with disability 38–45; print news media and minority groups 36–38; reading disability and 46 commerce 255 communication: augmentative and alternative (AAC) 276–278, 282–283; cartoons as cultural 123–124; mobile phones 288–292; robots 317–318; technology and 275–276; The Theory Of Everything 278–282; web accessibility 258 conflict frame 25 Cong, Cai 182–183 consumer-generated media 349–350 control of robots 321–322 Convention on the Protection and Promotion of the Diversity of Cultural Expressions 403–404

413

Index

Convention on the Rights of Persons with Disabilities (CRPD) 1, 215, 254, 296, 401, 404–405 copyright 400–402, 404–407 Corbett, Jenny 132 counter-narratives 382–384 Couser, G. Thomas 65 co-workers 389 CPRD see Convention on the Rights of Persons with Disabilities (CRPD) Crazy Ex-Girlfriend 95 Creative Australia 403 Creative Media Workforce Survey 388 criminalization 43–44, 45 Crip Imponderabilia xxv cripface / cripdrag / cripping up 82, 83, 85, 88–89, 94–95 cripping 59, 201–203 Cripping the Landscape 1: Québec City 202 #CripTheVote / #CripTheVoteUK 378 critical disability studies 38, 45–46, 297–298 critical making 313 Cromer, Kayla xxv Crow, Barbara 199 Crow, Liz 152, 267 crowd sourcing 267, 269, 270 Cultural Bill of Rights 403 cultural disability studies 52 cultural interfaces 38 Cultural Locations of Disability 3 cultural model of disability 113, 152–153 culture: citizenship and 401, 403–404; CRPD 404–405; defining 150–151; disability imaginaries and 13–14, 16, 18; notions of disability 64–65, 66; popular culture 149–155; representations and understandings 373–374; see also popular culture Curtis, Rosemary, chapter by 1–9 customer reactions 389 CVAA see Twenty-First-Century Communications and Video Accessibility Act (CVAA) cyborg metaphor 307 Dahl, Marilyn 130 Dalvit, Lorenzo, chapter by 285–294 Dameron, Julia 222 DanceWriting 222 The Danish Girl 68–69 Darling, J.N. “Ding” 126 Day, Felicia 394 deaf actors 392 Deaf and Dumb and Blind Institute 45 deaf community: authentic representation 90–92; lack of signed literature 220–221 decolonization: approach to disability studies 36, 38; definition 35 defamiliarization 139–140, 141, 142 Deleuze, Gilles 226 Deliciously Disabled 333

dementia 78, 79–81 Dench, Judy 82–83, 85 DePauw, Karen 102, 103, 109 depression 95 Design Meets Disability 3 Devido, Shannon 393 Dick, Murray 331 Diebler, Matthew 141 Difficult People 393–394 digital action networks 380–381 digital activism: Africa 189, 194–197; disability rights advocacy 377–385 Digital Disability: The Social Construction of Disability in New Media xxiii digital divide: advocacy and 378–379; Africa 190, 196–197; South Africa 286–287; video-ondemand (VOD) services 297, 298–299, 301–302 digital media: accessibility 243–250, 252–260; use in Africa 189 Ding, Yao 270 (dis)ability: definition 137; in speculative media 138–144 Disability, Handicap & Society (journal) 2 Disability & Society (journal) 2 disability and media: companion users’ guide 3–7; importance of field 1–2; research and teaching 2–3 Disability and Social Media: Global Perspectives xxiii Disability and the Media xxiii disability art 370–375 disability arts 153 disability beats 329–338, 357–358 Disability Culture Institute 133 disability imaginaries: introduction 13–14; human imaginaries 17–18; restrictive nature of 14–16; rethinking normalcy 18–20; social imaginaries 16, 17; conclusion 20 Disability March 380 disability media studies: growth of field xxiii–xxiv; research and teaching 2–3 Disability Media Studies xxiii Disability Rag 358 disability rights: advocacy 266–267, 333, 377–385; authentic representation and 215–216 disability simulation 202–203 disability studies: critical 38; feminist approach to 50, 51–52 Disability Studies Quarterly (journal) 2 “disability” terminology 29, 36, 39 Disability Visibility Project (DVP) 206–207 Disabled People Against Cuts (DPAC) 379–380, 383 disablement 372–373, 402 Disabling Prejudice: Attitudes Towards Disability and its Portrayal on Television 387–388 DiSalvo, Carl 313 disclosing disability 256, 266, 267–268, 389–390, 392–393 discourse 51 dislocations 152

414

Index

dismediation xxiv disruptive innovation 295, 378–380 Dobranski, Kerry 190, 266, 267 documentary films 62–64, 84, 199, 286 do-it-yourself 307–314 Dolmage, Jay 122, 132 Donovan, Rich 255, 342–343 Dove’s “Campaign for Real Beauty” 50, 54 Down syndrome: actors with 90, 93; inclusive education 211–212; myths 214; reality TV 96; telenovelas 209, 212–215, 216 Droga5 348–349 Dubin, Mark 236 Dudley, Lewis J. 222 Duncan, Margaret C. 108, 109 dwarfism: reality TV 89, 95–96; A Song of Ice and Fire 114, 115–120 Dyer, Richard 24

Evans, Dominick 351 everyday life: advertising portrayals 53–54, 57, 347–348; disability and non-disability 17–19; framed as extraordinary 14–16 Everything’s Gonna Be Okay xxv Extraordinary Bodies 3 eye contact 282

e-advocacy 377–385 EasyChirp 267, 268 Eaton, Meredith 90 Ebert, Roger 139 e-book readers 402 economic impact of people with disabilities 255, 342–343 economism 25, 26, 27 editing 224 education 181, 183, 210–212, 256–257, 286 Eenadu 24 Ekiti State Broadcasting Service (ESBS) 174 elections 171, 378 Electronic and Information Technology Access Advisory Committee 245–246 Ellcessor, Elizabeth: chapter by 243–251; works by xxiii, 3 Elliott, Tim 89 Ellis, Katie: chapters by 1–9, 101–112, 149–157, 387–399; citations 38, 139, 199, 206, 265, 269, 363; works by xxiii, 3 Ellison, Nicole, B. 264–265 email 258 email lists 235 employment: actors 392–394; in advertising 344–345; Afghanistan 179–180; Australia 298; disabled employees’ concerns 389–392; employers’ concerns 389; within media 28–31, 216, 387–388, 395; unsafe work practices 394–395; web accessibility 255–256 Empowering Women with Disabilities (EWD) 179 empowerment 103, 165–166 encouragement model 177 Enhancing the Interaction between Citizens and the State in Sierra Leone (ENCISS) Programme 195 entertainment 258–259 enworlded imagination 18 e-petitions 377, 378 eugenics: movement 36, 46; overtones 80–81, 140

F*ck Yeah, Accessibility 249 Facebook 193, 236–237, 265, 266, 267–268, 269 Facts of Life 92 Fangs for the Fantasy 138 fantasy: genre 114; sequences 82 Farah, Mohamed Ali 184–185 Fatal Attraction 68 feedback 239–240 feminist disabilities studies 50, 51–54, 118–119 Fernbach, Susan 60–61, 62 fiction 114–118, 138 file types 224 film: Breathing Lessons: The Life and Work of Mark O’Brien 59, 62–64; disability portrayal 158–168; experience of watching 161–166; Greenberg 69–72; I am Sam 163–164; intellectual disabilities 158; mental health portrayal 67–68, 75; The Sessions 59–62; silent 222; Silver Linings Playbook 67, 72–74; Still Alice 78, 79–81, 83–85 #FilmDis 351 Findlay, Carly 267 Fineman, Martha Albertson 405 Fischer, Roger 128 Fisher, Karen 181 Fiske, John 150–151, 154 Fiveash, Chad 92 for-anyone-as-someone structure of films 68, 74 Fowler, Micah 94 Foxton, Willard 350 frame analysis 24, 25–26 framing: of disability 334–335; of Indigenous peoples 36 “freak” discourse 54–55 freak shows 25, 26, 27 Freaks (film) 89 Fries, Kenny 130 From Grief to Struggle 212 function 17, 19 Game of Thrones 113–120 gaming 249, 258–259 gaokao 181 Gaoshan, Fu 181 Garland-Thomson, Rosemarie: citations 3, 16, 52, 53, 54, 129, 321, 367; degrees of disability 321; metaphors 129; representations of disability 16, 52, 124, 367; “staring” theory 53–54; who defines disability? 132; works by 3 Gattaca 140

415

Index

Gay and Lesbian Alliance Against Defamation (GLAAD) 88, 216, 344, 392 gender: disability and advertising 50–57; mental health stereotypes 68 Gerbner, George 24 Germeroth, Darla 132 Ghana 170, 174 Ghedin, Guido 193 Giannoumis, G. Anthony 270 Gibbs, El 363 Gilbert, Keith 105, 108, 109 Gilligan, Vince 93 Gilroy, John, chapter by 35–49 Gilroy, Paul 18 GimpGirl 233–241 Ginsburg, Faye, foreword by xxii–xxvi Giovanni FCB 212 Giroux, Henry A. 367–368 Glatzer, Richard 84–85 Global Public Infrastructure Initiative (GPII) 270 Goffman, Erving 118 Goggin, Gerard: chapter by 1–9; citations 20, 38, 178, 196, 199, 204, 206, 243, 265, 269, 363, 402; works by xxiii, 3 Golden, Anne 102 Goldstuck, Arthur 285 Golub, Philip 351 Goodley, Dan 18, 151 goodwill building 25–26, 27 Google Books 406–407 GoPro camera 201–203 gothic rhetoric 65–66 Grahamstown, South Africa 287–291 The Grand Budapest Hotel 83 graphic novels 220, 221, 225–226 Greenberg 69–72, 74 Gregory, Joy 91–92 Grillo, Gina 345 Grue, Jan 56 Guanaes, Nizan 211 Guattari, Félix 226 guest star roles 88, 89 hacking 306 Hackman, Michelle 390–391 Haddon, Leslie 308–309 Hadley, Bree 3 Hahn, Harlan 51 Hall, Stuart 24 Haller, Beth: chapters by 1–9, 88–100, 122–136; disability beats 336; framing of disability 173, 335; news photography 107, 109; people-first language 29; photographs 101; representations of disability 16, 24, 38, 51; works by xvii, xxiii, 3, 333 Haque, Eve 13 Hardest Hit 380, 382–383 hardship model 177 Hargittai, Eszter 190, 266, 267

harmonization of standards 246–248 Harper, Stephen 67 Harpur, Paul, chapter by 400–410 Harrison, Mia, chapter by 113–121 Harrison, Randall P. 123 Harry Potter 138 hashtag activism 350 HathiTrust 406, 407 Hawking, Stephen 276, 278–282 Hawkins, Wayne, chapter by 295–305 Hayes, David 334 health care 371, 373–374 Heffernan, Virginia 360 Heider, Don 171 Heiderich, Patricia 211–212 Heiss, Sarah 50, 54, 57 Henderson, Helen 330–332, 334, 336, 337–338, 357–358 heroic overcoming 61–62 Herrera, Linda 189 Hess, Stephen 128–129 Hevey, David 129 Hilgemberg, Tatiane, chapter by 101–112 Hill, Nancy 344–345 The Hindu 24 Hitselberger, Karin 153, 154 HIV/AIDS 95 Hockey, Joe 316 Hoffman, Guy 322 Hollier, Scott 269 Honey Maid 348–349 Hong, Devon 349 Hopkinson, Nalo 138, 139 Horkheimer, Max 151, 297 Horsey, David 123 Houston, Ella, chapter by 50–58 Howe, P. David 103 HTML5 259–260 human imaginaries 17–18 human interest frame 25 Humans of New York 368–370 humor 131–133 Hyatt, Glenda Watson 249 I Am Sam 162, 163–166 iARM robot (Exact Dynamics) 318 Ice Bucket Challenge 349–350 identity 342 identity-first language 237 Ilea, Ramona 141, 142 imaginaries see disability imaginaries impairment 152–153 inclusion: in advertising 51, 343–344, 348–349, 351–352; or commodification of diversity 57; in media creation 184–185, 215–216; news media 23, 28–31; see also authentic representation independent living 63, 288–289, 291, 319–320, 321 Independent Living Fund (ILF) 383

416

Index

Indigenous peoples: in Australia 35–36; in the Colonial Press 38–45; critical disability studies 38; news media and the future 45–46; print news media and 36–38 Indigenous standpoint theory (IST) 38, 45 individual deficit (model of disablement) 67, 69, 73, 74 “inferiority/inability,” disability as a consequence of 40–42, 45 information communications technology (ICT) 190, 192–193, 235–237, 240–241, 308–309 infrastructure 30 Innes, Graeme 265, 316 innovation: frameworks 308–309; life hacks 310 inspiration porn 268, 331 inspirational narratives 64 Instagram 265 institutionalization 44–45 intellectual disabilities 158, 161–166 interdependence 320–323, 324 interdisciplinary work 3, 7 International Association of Accessibility Professionals (IAAP) 248 International Classification of Functioning, Disability and Health 15 International Congress on Education of the Deaf (Milan Congress) 222–223 International Society for Augmentative and Alter- native Communication (ISAAC) 281 Internet use 189–190, 192–193, 378–379 Internews 185 interpretation 20 Interrogation 394 intersectionality 118–120 interviews 24–25, 28–31, 191 invisible disabilities 102, 390 Iris 83, 85 iSlavery 395 It Fell on Deaf Ears (C’est tombé dans l’oreille d’une Sourde) 220, 221 Ivey, Bill 403 iview 299–300 JACO robotic arm (Kinova) 318 Jakober, Marie 143 Jantjie, Thamsanqa 286 JAWS 253 Jenkins, Henry 151 Jenner, Kylie 154 Jenson, Robert 357 Jewell, Geri 92, 93 Johnson, Dwayne “The Rock” 97 Johnson, Mark 130 Jones, Chelsea Temple: chapter by 329–340; citations 356, 357–358, 391 Jordaan, Braam 223 Jordan-Harris, Scott 88–89, 97

journalism: advocacy journalism 332, 357–364; citizen journalism 192, 194–195, 203–204, 206; disability beats 329–330; disappearances and backstories 337–338; emergent disability journalism 336–337; employment 389–391; new disability journalism 332–333; newsroom norms 330–332; writing 333–336 Kali 131, 132 Karppi, Tero 320 Keep, Dean 199 Kent, Mike: chapter by 264–274; citations 204; works by xxiii, 3 Kenya 170, 189, 191–192 Kerry, John 128 Kessler, Lauren 357 Khachadurian, Kyle 351 Kilgore, De Witt 138 Kindle 402 Kirkpatrick, Andrew 248 Kirkpatrick, Bill xxiii, 3 Kovaleski, Serge 391–392 Kupper, Petra 3 Kwantlen Polytechnic University (KPU) 159 La La Land 68 lack of function 14–16, 17, 19 Ladau, Emily 351 Ladd, Paddy 223 Lakoff, George 130 Lambird, Robyn 346 language: digital divide 286–287, 290; GimpGirl 237–238; importance of 220, 226; inclusivity of 29; media frames 174; metaphors 122 Lannister, Tyrion (G.R.R. Martin character) 113–114, 115, 116–117 Latimer, Robert 334–335 Latimer, Tracy 334–335, 357 Lavender, Isiah 139, 140 Law & Order 90 Lazar, Jonathan: chapter by 252–263; citation 255 leadership 183, 195–196, 381–382 leaning and lifting 316, 323–324 Lecker, Michael J. 141–142 Leduc, Véro, chapter by 220–230 Lee, Myung 108 Lego 149–150 Lembree, Dennis 268 Léséleuc, Eric de 108 Lewin, Ben 59, 65–66 Lewis, Liza Stavchansky 360 Li, Nan 270 Life Goes On 90, 93 life hacking 306–314 life writing 64–65 Lights! Camera! Access! 2.0 (LCA2.0) 345 likeability 67, 70–71, 72, 74 LimeSurvey 239

417

Index

Lincoln, Abraham 124–126, 127 Link Magazine 358 lipreading 92 Little Britain 359 little people actors/TV stars 89, 90, 95–96 Little People, Big World (LPBW) 89, 95–96 Live Life (Viver a Vida) 215 lived experience 51, 53–56, 57 LiveJournal 235–236 Loebner, Josh, chapter by 341–355 Longford, Michael 199 Longmore, Paul 61–62, 129 Love Has No Labels campaign 343–344 Lovitz, Melissa 350 LSQ (Quebec Sign Language) 220, 222–223, 226 Luterman, Sara 281, 283 M*A*S*H 90 Macias, Wendy 360 MacKendrick, Jaci, chapter with 158–168 Mad Matters 334 Maddox, Kay 390 Magladry, Madison, chapter by 101–112 mainstream films 69, 78–79, 84 maintenance/repair life hacks 311 Mallet, Rebecca 2 Maltesers advertisement 347–348 Manaseri, Holly 150 Manning, Lynn 133 Manuel, Adam 394 manufacturing 395 Marcellini, Anne 108 market economy 23, 26–28, 31–32 Marrakesh Treaty 400, 401, 405–407 Marshall, Leni 78 Marshall, Tamara 389 Marshall, Thomas H. 403 Martell, Janine 346 Martin, George R. R. 113–120 Matlin, Marlee 392 Mattel 153 Max, Miss Mary 132 Maynard, Kyle 347 McDonald, Donna 3 McKay, Andrew 266, 269 McPherson, Tara 151 Me Before You xxiii, 155 Mealtime Partner (Assistive Innovations) 318 Meat and Livestock Australia 346 media and disability see disability and media media competencies 254–255 media creators 177–185 Media dis&dat 336 medical model of disability: in colonial Australia 43–44; persistence of 25, 26, 27; policy and 319; technology and 307; use in advertising 50 Meekosha, Helen: chapter by 35–49; citations 45, 50, 140

mental health 67–74, 95, 127–128 Menzies, Robert 316 Mercado, Jillian 52–53 Merchant, Melissa, chapter by 387–399 message boards 360 message selection techniques 277–278 metaphors 113–115, 122–123, 129–132 MetaSocial Institute 211–212 Mexico 395 Michalko, Rod 16 Milan Congress (International Congress on Education of the Deaf) 222–223 Miller, Katie, chapter with 158–168 Miller, P. Andrew 142 Miller, Toby 395 Million Dollar Baby 81, 82 Mills, Mara xxiv minority voices 37 Mitchell, David: citations 16, 52, 63, 122, 152–153, 155; works by xxiii, 2, 3 Mitte, RJ 93, 97 mobile media: accessibility 248–249; activism and 199–207; Africa 190; augmentative and alternative communication (AAC) 275–282 mobile phones 192–193, 275, 285–292 mobile video 199–207 Mobile Web Best Practices (MWBP) 248–249 mobility impairment 52–56 Mobiserv Project 317–318 Mocarzel, Evaldo 212 Mocarzel, Joana 212–213 Modesta, Viktoria 54–55 modification life hacks 309–310 Mondelez International 348–349 Monitor (newspaper) 36 Moodle 236 Moore, Julianne 78, 81, 83–85 Morgan, Hannah 390 Morissette, Laurent 204–205 Mork and Mindy 89 Morozov, Evgeny 189–190 Moving On 333 Moyes, JoJo 155 Mr Magoo 130 Mullins, Aimee 56–57 Multicultural Excellence Award 346 Muny, Chomba 170 Murray, Jonathan 96 Mustacchi, Zan 213 My Gimpy Life 393 My Spoon (SECOM) 318 Mynott, Ed 24 MySpace 264–265 my-worlds 68–69 Nader, Haji 179–180 Nakata, Martin 38, 45 narrative fiction 114–118

418

Index

Narrative Prosthesis xxiii, 3 Nast, Thomas 124–126, 127, 128 National Accessibility Portal 287 National Alliance of the Mentally Ill (NAMI) 127–128 National Communication Association (NCA) 2 National Disability Insurance Scheme 298, 361, 363 National Disability Survey in Afghanistan (NDSA) 178–179 National Federation of the Blind (NFB) 130, 289, 402, 407 National Library for the Blind (NLB), South Africa 287 nationality in sport 103 Nelson, Jack 124 Netflix 1, 97, 286, 296, 300, 302 networks 380–382 Newell, Chris xxiii Newhouse, Barbara J. 350 news media: changing representations 175–177; disability imaginaries as 14–16, 19–20; disability narratives 25–26, 169–170, 173–174; identity formation and 35; ignoring disability stories 171–172; India 23; influence on TV content 90–92; political economy theme 26–27; portrayal of minority groups 45–46; production by people with disabilities 29–30; research methods 24–25; social media as 266; specialized reporting 329–338 news pitches 334 newspapers: early Australian 36, 38–39; inclusion 28–31; photographs of Paralympic athletes 104–110; political economy 26–28; portrayal of minority groups 35; representations of disability 23, 24–26, 31–32 Niccol, Andrew 140 Nigeria 170–171, 174, 176 Nike 347 Nolan, Jason, chapter by 233–242 non-disability 14, 17–18, 19 non-representation 172–173 nonverbal communication 277, 279, 335–336 Noor, Rabia 203 Norden, Martin 81 Nordstrom 52–54 normalcy: colonization 45–46; disability imaginaries 17–18; media shaping of 24; mental health in film 68, 69, 73–74; redefining 18–20, 233 “normate reductionism” 52 normative notions: disability and non-disability 17–18; disability imaginaries and 13–14, 18–20; “white Australia” 36, 45–46 “normative positivisms” 57 Northop, Sandy 128–129 The Notebook 79 Nudd, Tim 348 NV Access 253

Oasis 82 object-centered life hacks 309–311 O’Brien, Danny 306 O’Brien, Mark 59–66 O’Connell, Ryan xxv Ofcom 301–302 Ogundola, Olusola, chapter by 169–176 O’Haver, Kimberly, chapter by 189–198 older adults 78–80, 85 Oliphant, Pat 127, 130 Oliver, Michael 130, 152, 155 On Our Radar 195 “On Seeing A Sex Surrogate” 59, 60–61, 64–65 One Plus One 181–184 Onley, David 332 online communities 206, 233–241 oral speech 282 Osifchin, Gary 349 “othering” 51 Ouch 358, 359–361, 384 overcoming narratives 61–62, 64, 65–66, 286, 330–331, 347 Pages of Life (Páginas da Vida) 209, 212–215, 216 Palmer, Sara 139 Papacharissi, Zizi 265 Pappou, Athanasios 108 Parable of the Sower/Talents 143 Paralympic Games/athletes: advertisements 56–57, 347; framing of 26; impact 181; media coverage 54, 102–110; spectacularization of 101 Parent, Laurence, chapter by 199–208 Parker, Ian 69 Parviainen, Jaana 320 passing 118 pathological imaginaries 13, 17, 18, 19–20 Paulson, Sady 348 Peace, William 358 pedagogy 367–368 Peers, Danielle 102 Penn, Sean 164 Penny (G.R.R. Martin character) 114, 117–118, 120 people-first language 29 Pépin, Michel 205 perceptions: of media producers/consumers 28, 31; media shaping of 23–24, 31–32 personal narratives 161–162, 333, 363, 382–384 The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 30 Petrick, Elizabeth 244 Phoenix Rising 333 photographs: bodies of difference and 368–370; coding of 104; crediting 202–203; of Paralympic athletes 104–110; privacy 267–268 Pirhonen, Jari 320 Pistorius, Oscar 286 pitching 334

419

Index

Playboy 154 Playmobil 378 podcasts 333, 351, 359–361 political cartoons see cartoons political citizenship 403 political economy and disability representation 26–28, 31–32 popular culture 149–155 POUR principles 247, 249 Preece, Jenny 258 print disabilities 400–407 privacy: autonomous assistive robots 318, 319; social media 267–268 producerly disability 150, 153, 154–155 production: inclusion and 28–31; marginalization from 23; need for critical research 24 productivity 389 Project Restoration International (PRI) 174, 175–176 #ProjectValue 335 protection, Indigenous people with disabilities in need of 42–43, 45 public pedagogies 336, 367–368, 371–372, 373–374 public policy: media industry 31; medical model of disability and 319; video-on-demand (VOD) services 297–298, 299, 300–301 public value 401, 407 Pullin, Graham 3 Purdue, David E. J. 103 Purdy, Amy 347 Push Girls 95–96 Qahir-e-Qahraman (radio program) 178–180 Qishi Consulting 181 Quayson, Ato 16 Quebec Sign Language (LSQ) 220, 222–223, 226 The Question of Access 3 Qui, Jack 395 Quickfox Network 236–237 Rabkin, Eric S. 138 race: bodies of difference and 368–369, 370; cultural othering 45–46; disclosure of 225; in speculative media 138–144 radio: Afghanistan 178–180; China 182–183 Radsch, Courtney C. 192 Ragen, Jo, chapter by 35–49 Ragged Edge 333, 358 Ralph, Sue 51 Raman, Usha, chapter by 23–34 Ramp Up 356, 361–364 Raphael, Raphael 150 Re•Vision Centre for Art and Social Justice 370–373, 374 Reading Blind 371–372 The Real World 95 reality TV 89, 95 reappropriation life hacks 311–312

rebellion 53, 55 Reclaiming Conversation 283 recruitment 28–30, 31, 255–256, 344–345, 389 Reddit 267 Regroupment des activistes pour l’inclusion au Québec (RAPLIQ) 200 Reindal, Solveig 319, 321 relational autonomy 320 relationship building 161–162 Reno, Joshua 276 repair life hacks 311 Reporters’ Handbook for Reporting Disability 182 representations of disability: in advertising 50–56; Africa 170, 174–175; authentic on US television 88–98; categorizations of 16, 24, 81; China 177; erasure 138–140, 143, 172–173; historic and contemporary xxiii–xxiv, 367; importance of 23–24, 38, 89–90, 368–370, 374–375; political economy and 26–28, 31–32; Re•Vision Centre for Art and Social Justice 370–373; reactions and impact 51, 124, 367–368, 373–374; visible and invisible disabilities 102 representations of Indigenous peoples 36–38 Representing Disability in an Ableist World: Essays on Mass Media xxiii, 333 research and teaching 2–3 Restricted Access: Media, Disability and the Politics of Participation xxiii reuse life hacks 312 revulsion, attitudes of 170 Reynolds, Richard 142 “rhetoric of emancipation” 65 Rhodes University 287–288, 290–291 Rice, Carla: chapter by 367–376; citations 371 Rice, D. Andy 201, 203 Rights of the Persons with Disabilities Act 2016 (RPWD Act) 30 Riley, Charles A. 81, 84 risk 54 ritual model of communication 123, 129 Robinson, Jerry, chapter by 306–315 robots 316–324 Roloff, Amy 89, 95–96 Roloff, Matt 89 romance 68, 70–71, 72–74 Roosevelt, Franklin D. 124 Rooted In Rights 351 Rose, Natalie 333 Rose, Tim 333 Rosendall, Scott 394 Ross, Edward 89 Rouleau, Joëlle 200, 201 Rucker, Allen 97 Russell, David O. 67 Ryan, Frances 82 Ryfe, David 331, 336–337

420

Index

Safan, Craig 93 SafePath Wheelchair (Gecko Systems) 318 Sancho, Jane 67–68, 71 Sandahl, Carrie 63, 130 Sandry, Eleanor, chapter by 316–326 Saujani, Sheyfali 371–372 Savides, Harry 71 Sawatzky, Emma, chapter with 158–168 Sawchuk, Kim 199 Sayaovong, Amoun 108 #SayTheWord 351 Scannell, Paddy 68 scanning 277, 278–279, 282 Schalk, Sami, chapter by 137–146; citations xxvi, 134; works by xx Schantz, Otto J. 105, 108, 109 Schierl, Thomas 102 Schnobb, Philippe 204–205 Scholes, Robert 138 Scope 383 Scott, Mark 362 screen readers 252–253, 260 screen-based communication 280, 282–283 Seattle Public Schools 256–257 Second Life 236–237 Section 508 standards 245–246, 247–248 security 288, 291 self-advocates 358, 362–363, 380–381, 382 self-representation see authentic representation semi-autonomous assistive robots 318–319, 321, 324 A Separation 79 SerenityMOO 235 Sesame Street 92 The Sessions 59–62, 65–66 sex: disability narratives in film 59, 60–63; O’Brien’s essay 64–65 sexual identity 108, 119, 141–142, 154 Shakespeare, Tom 51, 152 Share a Smile Becky 153–154, 155 sharing life hacks 312 Shattuc, Jane 151 Shearer, Teal 393 Shell, Lea Ann “Beez” 109 Shift 286, 372–373 Shultz 132 si5s 222 Siebers, Tom 88–89, 96 Sierra Leone 194–195 sign languages: authentic representation 91–92; literature in 220–221; oppression of 222–223; South Africa 286; writing 221–222, 223–225, 226 Silver Linings Playbook 67, 72–74 Silveri, Scott 94 Simmons, D. C. 132 simulations 258–259 situated knowledge 225 Skjerdal, Terje S. 171–172 slacktivism 350

smart films 69–72, 74 smartphones 189–207, 270, 275, 281, 285–292 Smith, Andrew 102, 103 smith, s. e. 82, 84 Smith, Tenikka L. 360 Snapchat 269 Snyder, Sharon: citations 16, 52, 122, 152–153, 155; works by xxiii, 2, 3 social citizenship 403 social context of mental illness 67, 69–70, 71, 73 social imaginaries 16, 17 social media: accessibility 268–269; activism and 266–267; advertising 350–351; alternative journalism 333; augmentative and alternative communication (AAC) 281; digital activism 378, 379; disclosure and privacy 267–268; future trends 269–270, 271; GimpGirl 236; history and context 264–266; importance of 266; online advocacy 384; web accessibility 257–258 social merchandising 210, 215 social model of disability: care robots 320–321; popular culture 152; print media 401–402, 405; technology 307 social networking 264–265 social problems: O’Brien on 63–64; representations as 37–38, 46 social shaping of technology 307–308 Somali Disability Empowerment Network (SODEN) 184–185 Somalia 177, 184–185 A Song of Ice and Fire 113–120 South Africa: disability in 285–287; experience of visual impairment in 287–291 Spartacus Network 381, 382, 383 Special xxv spectacularization 101, 110 speculative media 137–144 speech bubbles 225–226 speech impairments 276 Speechless xxv, 94 spelling boards 278–280, 282 sport: media coverage 102–103; newspaper coverage of Paralympic athletes 104–110; spectacularization of 101 Squire, Tari Hartman 345 standards of digital media accessibility 243–250 Stanton, Brandon 368–370 Stare at Shannon 393 Staring 3 “staring” theory 53–54 Starting with Julius 216 Statham, Paul 24 Sterne, Jonathan xxiv Stigma 118 Still Alice 78, 79–81, 83–85 Stohl, Ellen 154 Stokoe, William 222 storytelling 333, 334–336, 371–375, 382–384

421

Index

Strauss, Bob 83–84 streaming television 97; see also video-on-demand (VOD) services Studying Disability Arts and Culture 3 style guides 336 subscription video-on-demand services 97, 297, 300 success despite impairment 27 Sullivan, Katy 97 Sullivan, Tom 89 Sultani, Nafeesa 179 Super Bowl 347 supercrip narratives/stereotypes 54–55, 56, 85, 103, 347–348 supernatural beliefs 170 Sutton, Valerie 222 Sutton Sign Writing 222 Sweeney, Eva 94 Swinton, Tilda 83 Switched at Birth 90–92 Sydney Gazette and New South Wales Advertiser 36 Sydney Morning Herald 36 tactical life hacks 311 Talkback 253 Target Australia 346 Tarrow, Sidney G. 379 Tasmanian and Port Dalrymple Advertiser 36 Taylor, Charles 17 technical specificity 245 telenovelas 209–210, 212–215, 216 television: actors with disabilities 89–90, 92–95; authentic representation 88–90, 96–98, 392; influence of news 90–92; reality TV 89, 95–96; South Africa 286 Temple, Mick 195 text-to-speech (TTS) 287, 289, 290, 292, 402 textual representation xxiii The Theory Of Everything 278–282 Theimer, Mikael 205 they-worlds 68–69 “This Is Wholesome” campaign 349 Thisability 286 Thomas, Carol 152 Thomas, Nigel 102, 103 Thompson, Mark 359–360 Thoreau, Estelle 359, 361 three-dimensional writing 223–224 throwback naturalism 71 time-shifted programming see video-on-demand (VOD) services Titchkosky, Tanya: chapter by 13–22; citations 249; works by 3 tokenism 332, 390–391 tolerance 170, 401–402 Toronto Star 330–331, 336, 357 townships 287 #ToyLikeMe 149–150, 151, 154, 378 Toyota 347

toys 149–150, 151, 154–155 Trace Research and Development Center 244–245 trans people 371 transport accessibility 200–201, 202, 204–205 Transport mésadapté (Maladapted Transit) 205–206 Trevisan, Filippo, chapter by 377–386 tropes: analyzing 123–129; challenging perceptions 373–374; in political cartoons 122–123, 132–133; the power of 129–132; why media matters 368–369 Trump, Donald 266, 391–392 Tuchman, Gaye 173 Tumblr 249 Turkle, Sherry 275–276, 283 Turnbull, Barbara 391 Turner, Colton, chapter with 158–168 Twenty-First-Century Communications and Video Accessibility Act (CVAA) 248–249, 302 Twitter 236, 237, 265–266, 268 Tyrion Lannister (G.R.R. Martin character) 113–114, 115, 116–117 ugly laws 343 Umansky, Lauri 129 Uncle Sam 126, 128 unemployment 179, 255, 387 United Kingdom: digital activism 377–385; disability studies programs 2; media workers with disabilities 388; video-on-demand (VOD) services 301–302; web accessibility 254 United Nations: Convention on the Protection and Promotion of the Diversity of Cultural Expressions 403–404; Convention on the Rights of Persons with Disabilities (CRPD) 1, 215, 254, 296, 404–405; Universal Declaration of Human Rights 403 United States: Convention on the Rights of Persons with Disabilities (CRPD) 404–405; copyright 405, 406–407; disability studies programs 2; media workers with disabilities 388; Twenty-FirstCentury Communications and Video Accessibility Act (CVAA) 248–249, 302; web accessibility 244–245, 253–254 #unitedwelamb 346 universities 2, 257 University of Guelph, Ontario, Canada 370–375 user-generated content 269, 382–384 Valenti, Britain 394 Vanderheiden, Gregg C. 245 Varley, Alex 269 Varvel, Gary 128, 131 Veditz, George 222 veterans 154–155 video games 249 videographic writing 220, 222, 223–225, 226 video-making 1, 199–207

422

Index

video-on-demand (VOD) services: accessibility 295–296; in Australia 296–297, 299–300; authentic representation 97; critical disability theory 297–298; digital divide 298–299, 301–302; media industry 29; policy discourse 300–301 violent stereotype 72 viral marketing 350 virtual marches 379–380 visibility of disability 102, 104, 108–109 visual impairment: access to books and print media 400–407; education 181; impact of stars with disabilities 89; mobile phones 288–292; Paralympic Games 105, 106, 109; political cartoons 127; in South Africa 287–291; web accessibility 252–260 Vital Signs: Crip Culture Talks Back 2 Voice of the Blind 182–183 vulnerable subjects 405 Wachsler, Sharon 132 Wade, Cheryl Marie 133 WAI-ARIA (Web Accessibility Initiative—Accessible Rich Internet Applications) 259–260 Wakefield, Doug 246 Wallace, Craig 268 Wangyun, Dai 177 Wasserman, Herman 189 “We All Walk in Different Shoes” 56–57 web accessibility 243–249, 252–260, 351 Web Accessibility Initiative (WAI) 245, 253, 259–260 Web Content Accessibility Guidelines (WCAG) 243–246, 253 web series 393–394 WeChat 265–266, 267, 270 Weibo 270 Weiss, Lizzy 91–92 welfare: Indigenous people with disabilities and 42, 43, 45; reform and activism 204, 379–380, 383 Wentz, Brian, chapter by 252–263 Werneck, Helena 211–213 Westmoreland, Wash 85 wheelchair users: actors and writers 94; Paralympic Games 105, 106, 109; reality TV 96; recruitment 390; representations of 368–370 #wheelchairsarentluggage 333 Where We Are on TV 216, 344 Where’s the Benefit? 381 Whittington-Walsh, Fiona, chapter by 158–168

Wilde, Alison, chapter by 67–77 Wilkens, Lee 124 Wilson, Woodrow 126 Window-Eyes 253 Wipond, Rob 334, 335 WisCon 138 women: in advertising 50–56; film representations, mental health and 73, 74; GimpGirl 233–241; multidimensional portrayals 71; older actresses 82–83, 85; Re•Vision Centre for Art and Social Justice 371; A Song of Ice and Fire 119; in sport 103, 107–108; underrepresentation 192 Wong, Alice 206 Wong-Ward, Ing 333, 335 Woodward, Stephanie 349 WordPress 236, 237 work: accommodations 256, 389–390; in the media 28–31, 387–395; unsafe practices 394–395; web recruitment and accessibility 255–256; see also employment World Health Organization 15 World Intellectual Property Organization’s (WIPO) Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired or Otherwise Print Disabled 400, 401, 405–407 World Report on Disability 15 World Wide Web Consortium (W3C): Authoring Tool Accessibility Guidelines (ATAG 2.0) 269; Mobile Web Best Practices (MWBP) 248–249; Web Content Accessibility Guidelines (WCAG) 243–246, 253, 268 writing sign languages 221–222, 223–225, 226 Wyatt, Robert 357 X-Men 141–142 Young, Stella 268, 346–347, 361, 362 young people 189–197 YouRen 182 YouTube 1, 204, 268, 269 Yu, Jessica 59, 62–64, 65–66 Zambia 192, 195–196 Zamora, Pedro 95 Zayani, Mohamed 194 Zayid, Maysoon 95 Zhang, Lingling 38

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