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Still Lives: Narratives of Spinal Cord Injury (Bradford Books) PDF

343 Pages·2004·0.82 MB·English
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S T I L L L I V E S N a r r a t i v e s o f S p i n a l C o r d I n j u r y J o n a t h a n C o l e Still Lives Still Lives Narratives of Spinal Cord Injury Jonathan Cole A Bradford Book The MIT Press Cambridge, Massachusetts London, England ©2004 Massachusetts Institute of Technology All Rights Reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or informa- tion storage and retrieval) without permission in writing from the publisher. This book was set in Sabon and Meta by Achorn Graphic Services, Inc. Printed and bound in the United States of America. Library of Congress Cataloging-in-Publication Data Cole, Jonathan (Jonathan David) Still lives : narratives of spinal cord injury / Jonathan Cole. p. cm. Includes bibliographical references and index. ISBN 0-262-03315-1 (alk. paper) 1. Quadriplegics—Great Britain—Biography. I. Title. RC406.Q33C64 2004 362.4′3′092241—dc22 2003059378 10 9 8 7 6 5 4 3 2 1 For my mother To my wife, Sue, and our daughters (in order of appearance): Eleanor, Lydia, Celia, and Georgia. Contents Acknowledgments ix I Introduction 1 1 Twenty Years On 3 II Enduring 23 2 We Are All New Boys 25 3 I Do Not Live a Normal Life 39 4 Endurance 53 III Exploring 63 5 Heads Up to the World 65 6 Being Someone Else 81 7 Exploration 97 IV Experimenting 107 8 Because I Can 109 9 Me and It 127 10 Experimentation 143 viii Contents V Observing 155 11 The Windsurfer 157 12 Both Sides Now 167 VI Empowering 179 13 Disability Matters 181 14 Flyers and Nonflyers 207 15 Empowerment 225 VII Continuing 235 16 For What I Am 237 17 Finding New Things 255 VIII Commentary 269 18 The Dreary Ooze 271 Appendix: Useful Websites 299 Notes 301 References 319 Index 325 Acknowledgments I am most grateful to those who invited me, a stranger, into their homes and offices. They allowed me to sit and listen as they discussed their, or their partner’s, spinal cord injury and its consequences, and then trusted me to write what I could. These twelve narratives form the heart of this book. In the course of researching the book I spoke with several medical and paramedical workers, and I thank all who gave their time to listen to my unformed and sometimes naïve thoughts. Thanks are due to Tony Tro- mans, Anne Seaman, Nigel North, and members of the physiotherapy and occupational therapy departments in the Duke of Cornwall Spinal Treatment Centre, Salisbury. My secretary Sharon Evans also helped by transcribing some of the interviews. These days it is not easy to find people able to talk about their expe- riences; medical records are confidential and out of bounds. In any case, I did not want to go to patients as a doctor and so would have spurned a medical route. I am very grateful to the various contacts and friends who suggested people I might go to see. In this I must mention Nigel North and Stephen Duckworth for their assistance, and the Spinal Injuries Association for kindly agreeing to run a small piece inviting peo- ple to contact me. In the end, I had more volunteers than I could possi- bly see; my thanks and apologies are due to those I could not visit and to those I saw but whose stories are not within this book.

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