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Interdisciplinary Disability Studies YOUTH AND DISABILITY Interdisciplinary Disability Studies Series Editor: Mark Sherry, The University of Toledo, USA Disability studies has made great strides in exploring power and the body. This series extends the interdisciplinary dialogue between disability studies and other fields by asking how disability studies can influence a particular field. It will show how a deep engagement with disability studies changes our understanding of the following fields: sociology, literary studies, gender studies, bioethics, social work, law, education, and history. This ground-breaking series identifies both the practical and theoretical implications of such an interdisciplinary dialogue and challenges people in disability studies as well as other disciplinary fields to critically reflect on their professional praxis in terms of theory, practice, and methods. Other titles in the series Disability, Human Rights and the Limits of Humanitarianism Edited by Michael Gill and Cathy J. Schlund-Vials Disability and Social Movements Australian Perspectives Rachel Carling-Jenkins Forthcoming titles in the series Communication, Sport and Disability The Case of Power Soccer Michael S. Jeffress Disability and Qualitative Inquiry Methods for Rethinking an Ableist World Edited by Ronald J. Berger and Laura S. Lorenz Youth and Disability A Challenge to Mr Reasonable Jenny SlateR Sheffield Hallam University, UK First published 2015 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint of the Taylor & Francis Group, an informa business Copyright © 2015 Jenny Slater Jenny Slater has asserted her right under the Copyright, Designs and Patents Act, 1988, to be identified as the author of this work. 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 publisher Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library The Library of Congress has cataloged the printed edition as follows: Slater, Jenny. youth and disability a challenge to Mr Reasonable / by Jenny Slater. pages cm. -- (Interdisciplinary disability studies) Includes bibliographical references and index. ISBn 978-1-4724-2851-6 (hardback) 1. youth with disabilities. 2. Sociology of disability--Research. I. Title. HV1569.3.y68S583 2015 305.9'080835--dc23 2014037361 ISBn 9781472428516 (hbk) ISBN 9781315546001 (ebk) Printed in the United Kingdom by Henry Ling Limited, at the Dorset Press, Dorchester, DT1 1HD Contents List of Figures vii About the Author ix Acknowledgements xi List of Abbreviations xiii Introduction: Theoretical Perspectives 1 1 Disabled People in (Neo)liberal Times (or, Disability as Unreasonable) 21 2 Youth as Border Zone, Disability and Disposability (or, Challenging Youth as Becoming-Reasonable Adult) 37 3 The Making of Un/Reasonable Bodies at the Border Zone of Youth 53 4 From Adulthood Independence to Continuing Relational Autonomy 63 5 Negotiating Space and Constituting ‘Problems’: Access at the Border Zone of Youth 81 6 Dis/abled Youth, Bodies, Femininity and Sexuality: Having Difficult Conversations 99 7 The Limits of ‘Sameness’: Goodbye Mr Reasonable 119 References 125 Index 145 This page has been left blank intentionally List of Figures 5.1 The dentist in Treeman from Boom’s final art piece 92 6.1 Princess Bella from Boom’s illustration of what she sees in her future world 101 This page has been left blank intentionally About the Author Dr Jenny Slater is currently a lecturer within the Sheffield Institute of Education (SIoE) at Sheffield Hallam University (SHU). She teaches across courses within the Education Studies programme, specialising in disability studies and social justice modules which explore cultures of in/exclusion within education. Her research explores youth and disability as socio-cultural and political constructs. Although focusing on ‘youth’ and ‘disability’ her research is interdisciplinary and intersectional; with a particular focus on gender and sexuality. Her latest research interest is in how toilets function as socio-cultural spaces within the lives of young people. She is co-organiser of the Disability Research Forum (DRF); a monthly forum discussing disability (and related) research held at SHU. She is part of the organising committee for the Theorising Normalcy and the Mundane conference series. This page has been left blank intentionally Acknowledgements The story of this book is only ever partial, and always connected. This means that there are lots of people I need to thank. Firstly, I am grateful to Ashgate for publishing this book, particularly Claire for her patient responses to my questions, and Mark, for his careful reading and thoughtful responses. I also have to thank the young disabled people and their allies who shared their thoughts, feelings and creativity around ‘youth’ and ‘disability’; as well as staff working within the organisations where I spent time. I extend an especially big thank you to Freyja and Embla. What I have learnt from these young women is immeasurable; they have made me see the world differently. I thank my academic and activist comrades: my students that have challenged my thinking; those that responded to my Facebook ‘peer-review’ call, took time to read my chapters and gave me much appreciated feedback; people that have made me feel so at home in the world of disability studies: members of the Disability Research Forum in Sheffield; the Centre of Disability Studies at the University of Iceland; and (particularly) to the regular cohort at Theorising Normalcy and the Mundane. Special mention to my buddies: China Mills, Anat Greenstein, Steve Graby, Jon Harvey and Cassie Ogden – thinking/drinking/ laughing/eating with you lot could never happen enough. Thanks of course to Katherine Runswick-Cole (AKA KRC: academic-life-advisor), and my PhD supervisors, Dan Goodley and Rebecca Lawthom. Dan, thank you for guiding me, giving me confidence, and encouraging me to wander into places I never thought I’d go … but also for making my time at MMU a lot of fun. These are all people and arenas I would not have discovered without my undergraduate tutor, colleague, and friend, Rebecca Mallett (the one who taught me everything I know). For this, Rebecca, I will always be grateful. I’ve a huge amount of gratitude to pay to my brilliant friends and family who have put up with me/put the world to rights with me during both my PhD and this book-writing process. Thanks Sarah, for looking after me and indulging my whisky-drinking whims; Siân, for the trips over the Pennines when a pint was called for; and Jóna and Bjarni, my Icelandic Mum and Dad. To Em: thanks for not being annoyed when I was flaky, but even more: thanks for thinking so hard about the world, for the conversations, for what you’ve taught me, and for everything else. To Mum, Dad, Bob, Jim, Dan, Uncle A and Steph: well, you’re just ace. xxxxxxxxxxx This page has been left blank intentionally List of Abbreviations CDS Critical Disability Studies IL Independent Living ILC Independent Living Centre ILM Independent Living Movement LGBT* Lesbian, Gay, Bisexual and Trans*. The asterisk (*) in trans* is used to represent all non cisgender identities. Including, for example, gender queer and non-binary people, as well as trans men and trans women. The asterisk in LGBT* also signifies other diversities of genders and sexualities within queer culture, such as intersex and asexual people. PA Personal Assistant YF Youth Forum This page has been left blank intentionally Introduction Theoretical Perspectives Dear Mr Reasonable This book begins with an opening letter to somebody you will come to know as Mr Reasonable. Dear Mr Reasonable, As I try to keep you at a distance, you’re probably surprised to hear from me. Well, I’m addressing this book to you, Mr Reasonable, because the time has come for us to have a chat. This is a book about conducting research at the intersection of youth and disability. Through a series of essays it aims to challenge a dangerous and pervasive (neo)liberal1 (Sothern 2007) reasonableness which threatens, amongst others, young disabled people. I’ll explain more of what I mean by this, both in this letter and as the book goes on. Before we get started, however, let me remind you of who you are, Mr Reasonable, to let other readers know why I’m aiming this book at you. What you are not, Mr Reasonable, is the overtly nasty person that it’s easy to be angry with. In fact, you could be that person that I occasionally find myself describing as ‘alright really’. You are the creation of systems which prioritise certain ways of being over and above others. By functioning around pervasive, market-driven ideas of what is ‘good’, ‘ideal’ and ‘normal’, these global capitalist systems make your life appear as ‘reasonable’, whereas the lives of others around you are deemed ‘unreasonable’. You are, for example, the Reasonable Careers Advisor who asserted that if I did not ‘speak properly’, dared to utter an ‘erm’ or an ‘um’ in a job interview, I would remain unemployed. You are the Reasonable Academic who told me this was ‘just the way it is’ when the ableism of that careers advice was pointed out. You are the Reasonable Manager that told my friend that she needed to ‘man up and grow some balls’ in order to survive work in the public sector: the workplace will not change to accommodate you, so you must change to accommodate it.
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