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Gary Karp - Life on Wheels: For the Active Wheelchair User

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Over 1.5 million Americans use wheelchairs for a variety of causes: a congenital condition, traumatic injury, or disease. People who depend upon wheelchairs for mobility are in varied situations. They might live independently or need attendant care; live alone or with family; be employed full-time or no longer working. Despite differences, people dependent on wheelchairs face some similar medical issues and a need to cope with changed circumstances.Life on Wheels: For the Active Wheelchair User is for people who want to take charge of their own life experience while using a wheelchair. Author Gary Karp, ergonomics consultant and long-time chair user, describes: Medical issues (paralysis, circulation, rehab experience, choosing the optimal wheelchair, scientific progress toward a cure) Day-to-day living (keeping fit, skin care, bowel and bladder care, sexuality, home access, maintaining a wheelchair, wheeling technique, insurance) Psychological and social issues (grieving loss, self-image, adjustment to life change, friends, family, asking for and being helped, cultural attitudes, history of disability, and activism)

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Page iii
Life On Wheels
For the Active Wheelchair User
Gary Karp
Life on Wheels For the Active Wheelchair User - image 2
Beijing Cambridge Farnham Koln Paris Sebastopol Taipei Tokyo
Page iv
Life on Wheels: For the Active Wheelchair User
by Gary Karp
Copyright 1999 O'Reilly & Associates, Inc. All rights reserved.
Printed in the United States of America.
Published by O'Reilly & Associates, Inc., 101 Morris Street, Sebastopol, CA 95472.
Editor: Linda Lamb
Production Editor: Claire Cloutier LeBlanc
Printing History:
July 1999: First Edition
The O'Reilly logo is a registered trademark of O'Reilly & Associates, Inc. Many of the designations used by manufacturers and sellers to distinguish their products are claimed as trademarks. Where those designations appear in this book, and O'Reilly & Associates, Inc. was aware of a trademark claim, the designations have been printed in caps initial caps. This book is meant to educate and should not be used as an alternative for professional medical care. Although we have exerted every effort to ensure that the information presented is accurate at the time of publication, there is no guarantee that this information will remain current over time. Appropriate medical professionals should be consulted before adopting any procedures or treatments discussed in this book. Photo of Jim Lubin Copyright 1999 by Mike Siegel. The women's tennis photo was taken by Curt Beamer, Copyright 1997 Sports 'N Spokes/Paralyzed Veterans of America. Photograph of the student with the backpack Copyright 1999 by Photodisc. Material from Missing Pieces: A Chronicle of Living With A Disability by Irving Kenneth Zola, Copyright 1982 Temple University Press, is reprinted with permission from Temple University Press. Material from The 1998 N.O.D./Harris Survey of Americans with Disabilities, conducted by Peter Risher and Stacey Amorosi for The National Organization on Disability, Copyright 1998 Louis Harris, is reprinted with permission from Louis Harris.
Library of Congress Cataloging-in-Publication Data: Karp, Gary, 1955-.
Life on wheels: for the active wheelchair user / Gary Karp.
. p. cm.(Patient-centered guides)
Includes bibliographical references and index.
ISBN 1-56592-253-0 (pbk.)
1. ParaplegiaPopular works. 2. ParaplegicsCare.
3. Wheelchairs. 4. ParalysisPopular works. 1. Title. II. Series.
RC406.P3K37 1999
362.4'3dc21
99-10557
CIP
Picture 3
This book is printed on acid-free paper with 85% recycled content, 15%post-consumer waste. O'Reilly & Associates is committed to using paper with the highest recycled content
available consistent with high quality.
Page v
For my parents
Sam and Bette
Page vii
Table of Contents
Preface
ix
1. The Disabilities
1
2. Rehabilitation
17
3. Medical Concerns
79
4. Staying Healthy
114
5. The Experience of Disability
162
6. Wheelchair Selection
211
7. Home Access
262
8. Intimacy, Sex, and Babies
316
9. Spinal Cord Research
369
10. Politics and Legislation
419
11. Getting Out There
447
Resources
501
Notes
525
Bibliography
533
Index
537

Page ix
Preface
The wheelchair is widely viewed as a symbol of illness and loss. Becoming a wheelschair user is thought of as failure, to be avoided at all costs, even when conditions cry out for an alternative method of mobility People with progressive conditions such as multiple sclerosis or amyotrophic lateral sclerosis do all they can to delay using a wheelchair, feeling that to do so would be to surrender to their disability. Many people in the early months after a traumatic event such as spinal cord or brain injury resist the purchase of a customized wheelchair because they insist they will walk again.
Those with no disability (a temporary condition, it is said, for most people), recoil in horror at the thought of being "wheelchair-bound." In their minds, it is a mark of tragedy, of lost dreams, of pity, grueling effort, and regret. One becomes an object of charitywith some thanks to the fundraising symbol of the "poster child"who needs care and lifelong medical management. It is an image fostered in the media in which films and television dramas emphasize either the tragedy or the heroism of peoplewith disabilities rather than portraying the largely normal daily life that many chair riders experience. Newspapers typically use the phrase "confined to a wheelchair" and write about chair riders as human interest stories.
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