Contours of Ableism This page intentionally left blank Contours of Ableism The Production of Disability and Abledness

Fiona Kumari Campbell Griffith University, Australia © Fiona Kumari Campbell 2009 Foreword © Dan Goodley 2009 Softcover reprint of the hardcover 1st edition 2009 978-0-230-57928-6 All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The author has asserted her right to be identified as the author of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2009 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave® and Macmillan® are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN 978-1-349-36790-0 ISBN 978-0-230-24518-1 (eBook) DOI 10.1057/9780230245181 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress. 10987654321 18 17 16 15 14 13 12 11 10 09 This work is dedicated to my daughter Revati Arden Campbell This page intentionally left blank Contents

List of Figures viii

Foreword by Professor Dan Goodley ix

Acknowledgements xiii

Part 1 Cogitating Ableism 1 The Project of Ableism 3 2 Internalised Ableism: The Tyranny Within 16 3 Tentative Disability – Mitigation and Its Discontents 30 4 Love Objects and Transhuman Beasts? Riding the Technologies 45

Part 2 Spectres of Ableism 5 The Deaf Trade: Selling the Cochlear Implant 79 6 Print Media Representations of the ‘Uncooperative’ Disabled Patient: The Case of Clint Hallam 97 7 Disability Matters: Embodiment, Teaching and Standpoint 115 8 Pathological Femaleness: Disability and Ontological Envelopment 130 9 Disability Harm and Wrongful Life Torts 146 10 Searching for Subjectivity: The Enigma of Devoteeism, Conjoinment and Transableism 160 Afterword: From to Studies in Ableism 196

Notes 199

Bibliography 205

Case Index 228

Index 229

vii List of Figures

1 Purification and translation. 8 2 Shifts in legal performances of disability. 36 3 Embracing Life (1999) Photographer: Belinda Mason. 171

viii Foreword

Dan Goodley Professor of Psychology and Disability Studies, Manchester Metropolitan University, UK

This is an important book. All forewords say that, though, don’t they? But this book is important because it comes at a crucial time in the development of disability studies across the globe, where disabled the- ory and activism have matured to such a stage that they are entering a key period. Through increased alliances with feminist, queer and post- colonial comrades, disability studies is continuing with its emancipation of disabled people at the same time as destabilising the dominant social order. This period of activism and has been defined by Lennard Davis (2002) as dismodernism: where the values of modernism and the ambitions of postmodernism are directly conveyed by the theory and activism of disabled people. Key to this dismodernist turn is a cri- tique of the dominant order, the other or alterity. For Campbell this alterity is ableism. That Campbell’s book is written from her location in the Global South is not coincidental. As I have noticed more and more in my own reading for a book on disability (Goodley, 2010), of which Campbells’ work has been very influential, scholars from outside of the Anglo-American traditions of disability studies have consis- tently demonstrated a willingness to be trans-disciplinary in approach. Campbell’s book not only builds on this tradition but take it further by introducing ableism as a novel and ground-breaking analysis to disability studies. There is also something of the Global South about the way in which Campbell directs her analysis. This text gazes and writes back at the Global North: at the ableism it insists on rolling out as part of what Hardt and Negri (2000) defined as Empire: the globalised bio-political machine of supranational organisations and rich nations, which aim to instil (and install) forms of subjectivity, ways of living and forms of governance in all corners of the world. Campbell not only takes to task ableism, she grabs it kicking and screaming from its perch aboard the good ship Empire and tears it apart. This is a book that is beauti- fully conceived and clearly argued. On page 6, Campbell outlines one

ix x Foreword of her (soon to be) victims of deconstruction, the able/ideal citizen of contemporary society:

Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in ), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.

Her point is that alterity for all of us is empty: we never match up to the ableist ideal. For disabled people, though, the alterity is further emptied, captured in common terms and couplets that indicate their exclusion from the symbolic, such as suffering from, afflicted with, persistent veg- etative state, the mentality of an eight-year-old, useless limb, good and bad leg, mentally unstable, deranged and abnormal. As Campbell (2009, p. 17) argues, instead of embracing disability at the level of beingness (i.e. as an intrinsic part of the person’s Self), the processes of ableism, like those of racism, induce an internalisation or self-loathing which devalues disabled people. In short, normality and normalcy is achieved through an unsaying: an absence of descriptions of what it is to be nor- mal. And ableism has potentially massive impacts upon disabled people:

regimes of ableism have produced a depth of disability negation that reaches into the caverns of collective subjectivity to the extent that the notion of disability as inherently negative is seen as a ‘naturalized’ reaction to an aberration. (Campbell, 2009, p. 166)

But, this is a book not simply about queering the various pitches of ableism such as norms, and antecedents; cultural forms of dis- ability production; the medicalisation of Deafness through the selling of Cochlear Implants, the biosocial and medical dramas of trans- planting body parts; the performance of disability in teaching; the co-constitution of disabled and female bodies; sexuality and disabled people. This text also looks for possibility, resistance and disruption. As Campbell notes on page 45:

More than ever, I argue we are witnessing a new kind of human subjectivity – intersubjectivity if you like – technological humans – hybrids, cyborgs, or monsters. What better place to extend our ideas about ableism and the production of disability than the subject Foreword xi

of transhumanism with all its incumbent issues around ontology, humanness and of course the place of technology.

In true transdiscplinary style, and drawing on a wonderful Smörgås- bord of including Latour, Butler and Heidegger and Fukuyama, Campbell firmly plants disability studies concerns in the arenas of tran- shumanism, postmodernism and, I would suggest, what Rose has termed thanatopolitics: the increasingly ableist obsessed nature of everyday life (Rose, 2001). For example, Campbell draws on the work of Har- away, which some of us in disability studies are finding more and more useful. But what emerges in Campbell’s analysis is a carefully resolute anti-romanticist view of the hybrid or post-human destination that undergirds a lot of feminist and critical technoscience ideas. In par- ticular, Campbell raises some important ethical and political questions about the kinds of transhuman – or hybrids – that are valued in an ableist system:

the transhuman project because it is founded on an unbridled form of ableism combined with an ‘obsessive technological compulsion’ – will involve a meager shuffling of the deckchairs – a rearranging of ‘bums in seats’. (p. 73)

This is important stuff. It warns us, as disability scholars, to be mind- ful of the assumptions that underpin contemporary understandings of ‘good’, ‘better’ or ‘future’ lives. Some of the key questions raised in this book, which will be of interest to readers from the social sciences and , include:

• What kind of society is technology advancing us into? • What forms of alterity are disabled identities being forged against and with? • What values underpin the schools, societies, institutions or cultural narrative that disabled people are, arguably, becoming more included within? • To what extent can alternative non-ableist notions of personhood be developed and valued? • How can a revisioning of ableist society influence the pedagogy, teaching and learning of disability studies? • How can the disabled body be desired and desiring in ways that subvert the ableist gaze? xii Foreword

On page 197 of the book, Campbell reminds us of the place of her analysis:

A move towards studies in ableism must not spell a separation with disability studies, rather the focus on ableism is meant to reconfigure a disability studies perspective and extend it. There is a real dan- ger of those who come to studies in ableism without being exposed to the rich canon of critical disability studies will not feel inclined, accountable or committed to broader disability studies scholarship. (Campbell, 2009, p. 197)

This health warning reminds us of the conviction to the politics of dis- ability that underpins all the arguments of this book. It also reminds us that disability is not a minority nor a peripheral issue: dis/abled peo- ple all face the threats of an increasingly punitive and governing ableist society.

References

Campbell, F. K. (2009). Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan. Davis, L. J. (2002). Bending Over Backwards. Disability, Dismodernism and Other Difficult Positions. New York: New York University Press. Goodley, D. (2010). Disability: Psyche, and Society. London: Sage. Hardt, M. and Negri, A. (2000). Empire. Massachusetts: Harvard University Press. Rose, N. (2001). The politics of life itself. Theory, Culture & Society, 18(6), 1–30. Acknowledgements

Writing this book has been an intensely personal experience. My theoretical reflections and discussions with others have encouraged me to reflect upon my own journey and struggles as a disabled person in an ableist society. I write from a lonely place where there is limited oppor- tunity to consider theoretically some of the topics of this book, where theory in its own right is valued and appreciated. The global critical disability studies community where time, networks and costs permit have been my partner along the way. Writing/thinking is not really an individual enterprise so I would like to pay homage to the people whose works have most influenced this book: Giorgio Agamben, Judith Butler, Wendy Brown, Martin Heidegger, Bill Hughes, James Overboe, Gregor Wolbring, Primo Levi and Owen Wrigley (please write another book!!). More personally this book is a tribute to the courage of the late Dr. Patricia Morrigan (Gowland), who inspired me as a 16 year old to think otherwise about social inequality and resistance through the power of imagination. Of course without Hashem who bestows all gifts there would be nothing. This work would not have come to completion without the tremen- dous encouragement of Lesley Chenoweth and Elizabeth Kendall from my home institution, the School of Human Services & at Griffith University. Along the way, during times of doubt about the work’s merit I received kind words and support from Bernadette Baker, Himali De Silva, Scot Danforth, Leslie Roman, Dan Goodley, William MacNeil, Andrea Rhodes-Little, Naomi Sunderland and especially Gerard Goggin. Conversations are the digestive sys- tem of thinking theoretically. I am indebted to the challenging dis- cussions with my graduate students in particular Lyn O Hamilton, Therese Crisp, the late Margaret Corney and especially Kathryn Duncan. Between juggling teaching schedules and writing grant applications I received immeasurable research assistance in formatting, updating sections of the book and receiving critical feedback from Josephine Seguna, book manager extraordinaire Gail Pritchard and Ann-Marie Tripp.

xiii xiv Acknowledgements

Thanks to Belinda Mason for permission to use her photographic image ‘Embracing Life’ from ‘Intimate Encounters – an exhibition of photographs by Belinda Mason’, Catalogue, p. 16, 2004. I feel privileged to be able to use the front cover painting On the Bars by Quentin Blayney, a young man who transformed his giftedness when confronted with disability and illness. Thanks to Paula de Burgh for permission to use this image.