Edited by Russell Shuttleworth and Teela Sanders
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SEX AND DISABILITY: Politics, Identity and Access Edited by Russell Shuttleworth and Teela Sanders 2010 The Disability Press Leeds First published 20010 The Disability Press Centre for Disability Studies School of Sociology and Social Policy University of Leeds Leeds LS2 9JT © 2010: The Disability Press/Russell Shuttleworth and Teela Sanders, selection and editorial matter, individual chapters. The contributors. Output from disk cover supplied and printed by University Print Services, a division of Media Services at Leeds. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form 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. British Library Catalgouing in publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloguing in publication Data A catalogue record of this book has been requested ISBN: 0-9549026-6-1 Contents The Disability Press Acknowledgements Contributors Preface INTRODUCTION: THE STATE OF THE FIELD 1. Towards an Inclusive Sexuality and Disability Research Agenda— Russell Shuttleworth PART I - CONSTRUCTING THE SEXUALITY OF DISABLED PEOPLE 2. Sexual ‘Vulnerability’ of People with Learning Difficulties: A Self- Fulfilling Prophecy—Andrea Hollomotz 3. Members Only: The Use of Gay Space(s) by Gay Disabled Men— Craig Blyth 4. Crip Sexuality: Sk(r)ewed Media Representation—Bethany Stevens 5. Exploring the Barriers to Sex and Relationships for People with Learning Difficulties—Ruth Garbutt 6. Disability, Masculinity, and Sexuality in Post-Soviet Ukraine— Sarah Phillips 7. ‘But Rachael was Enjoying It Too, Wasn’t She?’ Cultural Norms and Alternative Approaches in a Learning Disability and Sexuality Case Study—Carol Hamilton PART II - SEXUAL CITIZENSHIP AND SEXUAL RIGHTS 8. Sexual Citizenship, Sexual Facilitation and the Right to Pleasure— Teela Sanders 9. A Sex Worker Perspective on Working with Clients with Disability and the Development of Touching Base Inc.—Rachel Wotten and Saul Isbister 10. A Psychosocial Exploration of (Trans) Gender, Sexual Citizenship and Disability: A Case Study—Zowie Davy 11. Advancing Sexual Health of Persons with Disabilities through Sexual Rights: The Challenge—Godfrey Kanguade Bibliography The Disability Press The Disability Press aims to provide an alternative outlet for work in the field of disability studies. The Disability Press draws inspiration from the work of all those countless disabled individuals and their allies who have, over the years, struggled to put this particular issue onto the political agenda. Its establishment is a testament to the growing recognition of ‘disability’ as an equal opportunities and human rights issue within the social sciences. Funding for this volume was provided by the UK’s Department for International Development. The editor wishes to record his thanks to the School of Sociology and Social Policy at the University of Leeds for its continuing support of the Disability Press. Acknowledgements There are many people I should recognise for helping this book see the light of day. Firstly, I would like to thank the editor of Disability Press, Colin Barnes, for realising the importance of putting a spotlight on marginalized topics in sexuality and disability research. I would also like to give my sincere appreciation to the International Program Development Fund (IPDF) scheme at the University of Sydney. This scheme is set up to promote international collaboration and provided funding for attendance at three international conferences. I also need to thank Dean Gwynnyth Llewellyn for providing matching funds for this IPDF from the Faculty of Health Sciences, University of Sydney. Patricia Weerakoon, the Course Director for the Graduate Program in Sexual Health has provided constant encouragement and unflagging support throughout my time working in this program and on this project among others. My colleague in this program, Gomathi Sitharthan, has also lent a supportive ear on numerous occasions and has encouraged me in this endeavour. Faculty of Health Science library liaison for the Graduate Program in Sexual Health, John Paul Cenzato, has been invaluable to the success of this project, alerting me to important texts and resources in the field. Thanks should also go out to two postgraduate students working on sexuality and disability research projects, Natalie Hamam and Vanessa Gore who assisted me in the first phase of reviewing and categorising the research literature on this topic. These students and also Rachel Wotten, Saul Isbister, Tinashe Dune and Shane O’Dea, who are working on a range of important sexuality and disability topics, have enriched my understanding in this area of study and thus contribute to the spirit of the book. Thanks also go out to Nathan Wilson for providing his rich insight during our occasional confabs on sexuality, masculinity and disability. I especially want to thank my co-editor Teela Sanders at Leeds University, who was my international collaborator on this project, for her work in reviewing and providing feedback for some of the contributions, for assisting me in organizing our session at the biannual Disability Studies Conference, held at Lancaster University in 2008, and for her final proofing of this manuscript. Finally, I want to thank Nikki Wedgwood for assisting me with the nuts and bolts aspects of editing and formatting of the volume, as well as providing critical feedback on the introductory chapter. Contributors Craig Blyth is a lecturer in Learning Disability Studies in the School of Education at the University of Manchester. Ruth Garbutt is currently the Researcher Training and Development Officer in the Staff and Departmental Development Unit at the University of Leeds. Carol Hamilton is a senior lecturer in Disability and Inclusive Studies at the Department of Human Development and Counselling, Waikato University, New Zealand. Andrea Hollomotz is a lecturer in Social Policy at Manchester Metropolitan University. Saul Isbister is a private sex worker and sex worker rights activist based in Sydney, Australia, President and Public Officer of Touching Base Inc and also a research student at the Sexual Health Unit, Faculty of Health Sciences, University of Sydney. Godfrey Kangaude works as an independent consultant for Ipas and the Reproductive Health Unit of the Ministry of Health in Malawi advocating for reform of policy and law in order address the high incidence of maternal mortality and morbidity resulting from complications due to unsafe abortions. Sarah Phillips is Associate Professor of Anthropology at Indiana University, Bloomington. Teela Sanders is a Reader in Sociology in the School of Sociology and Social Policy at the University of Leeds. Russell Shuttleworth, a medical anthropologist by training, is lecturer in sexual health focusing on sexuality and disability and sexuality and ageing at the Faculty of Health Sciences, University of Sydney. Bethany Stevens is a faculty member and policy analyst with the Center for Leadership in Disability within the Institute of Public Health at Georgia State University. Rachel Wotton is an independent migrant sex worker and sex worker rights activist based in Sydney, Australia and Secretary of Touching Base Inc and has extensive experience and training in working with clients with both early onset and acquired disabilities. Preface This book represents one strategy to develop a more inclusive model of sexuality and disability research. It does so by recognising the importance for disabled people of a diversity of issues and the usefulness of employing a range of methodological approaches in their investigation. Following a review of the sexuality and disability research literature in which many issues and perspectives were found lacking, two international conference symposiums were organised around the theme of an inclusive sexuality and disability research agenda and a paper was presented on this theme at another international conference. Funding for the review of literature, organisation of symposia and attendance at these conferences was provided by an International Program Development Fund Award with matching funds provided by the Faculty of Health Sciences, University of Sydney. The general purpose of these funds was to promote international collaboration between universities in the World University Network. My co-editor, Teela Sanders from the University of Leeds, was an international collaborator on this award. The editors organised sexuality and disability symposia entitled, Towards an Inclusive Sexuality and Disability Research Agenda at both the 2008 Disability Studies Association Meeting held at Lancaster University in the United Kingdom and the 2008 Society for the Scientific Study of Sexuality held in San Juan, Puerto Rico. Many of the chapters in this volume were presented at these two symposia in which we specifically wanted to highlight issues and perspectives that are for the most part being overlooked by sexuality and disability researchers. We also contacted several other researchers working on marginalised topics and solicited chapters from them. Another important impetus for this edited book has been the extraordinary group of postgraduate research students in the Graduate Program in Sexual Health, Faculty of Health Sciences, University of Sydney. Several of these students