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

343 Pages·2004·0.82 MB·English

by  Jonathan Cole

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.