Life on Wheels

SECOND EDITION

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Karp, Gary, 1955–

Life on wheels : the A to Z guide to living fully with mobility issues / Gary Karp. — 2nd ed.

p. cm.

Includes index.

ISBN-13: 978-1-932603-33-0 (pbk. : alk. paper)

ISBN-10: 1932603-33-6 (pbk. : alk. paper)

1. Paraplegia—Popular works. 2. Paraplegics—Care. 3. Wheelchairs. 4. Paralysis—Popular works. I. Title.

[DNLM: 1. Disabled Persons—psychology. 2. Disabled Persons—rehabilitation. 3. Quality of Life. 4. Wheelchairs. WB 320 K18L 2009]

RC406.P3K37 2009

616.8′42—dc22

2008017421

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Printed in the United States of America

08 09 10 11 5 4 3 2 1

1. Rehabilitation

2. Healthy Disability

3. The Experience of Disability

4. Wheelchair Selection

5. Intimacy, Sex, and Babies

6. Spinal Cord Research

7. Home Access

8. Getting Out There

No one signs up for a disability. We can’t choose how or when such a thing might impact our lives. But we can choose what happens next; whether to sit around and wait for the future to happen, or to jump in and
make
it happen.

I chose the second option. And while that may look like the obvious answer, it’s not necessarily an easy one. At least it wasn’t for me. I worked hard to become knowledgeable about life with a disability. I struggled to overcome fears. I dealt with the seemingly endless challenges of my new life as a person with a disability.

I wish I’d had this book.

Life On Wheels
is a unique and invaluable resource for active wheelchair users ready to jump-start their life’s journey or explore new options. Gary Karp has packed these pages with helpful information, personal insights and a triumphant spirit, resulting in a book that takes you by the hand and confidently guides you toward personal mastery.

Being in a wheelchair doesn’t mean you can’t live a full and rewarding life. The journey toward fulfillment begins when you believe you
can
, and continues as you do whatever it takes to achieve your goals. Let
Life on Wheels
be your “travel guide” along that journey, providing wise and wonderful learning tools to unleash your mind, body and spirit. With this book, the more you explore … the higher you’ll soar!

Gary has done an outstanding job of taking over a third of a century of personal experiences and research during his own disability journey, boiling it all down into user-friendly, bite-size nuggets of practical advice. There’s never a dull moment, as he illustrates how exciting life can be when it has real purpose and meaning. Best of all, this isn’t a “one size fits all” formula for fulfillment; rather, Gary will help you create a truly customized approach for achieving a life of health, self-sufficiency, intimacy, and fun.

As a wheelchair user with a spinal cord injury since 1978, I know first-hand that overcoming great challenges brings even greater satisfaction. When the wheelchair industry was content to produce one bland, heavy, institutional chair after another, I co-founded Quickie Designs to challenge the status quo. The result? We innovated a whole new kind of chair that enabled millions of people to enjoy unprecedented mobility, opportunity, and freedom. We “reinvented the wheel” and revolutionized the entire industry, helping wheelchairs evolve from institutional heavyweights to liberating ultra-lightweights designed with cutting-edge materials, full adjustability, modern styling, and a fun personality.

Interestingly, I found myself not only in the business of advancing wheelchairs, but changing broad perceptions about the people who used them. With their Quickie chairs, users were seen as empowered instead of helpless, and by the millions they were able to proudly take their places in every level of society. Today, people with disabilities no longer let their wheelchairs keep them from working, traveling, raising families, and making their mark on the world. And I’m both proud and humbled to have played a role in that.

But society still has a long way to go in providing the environment and resources that make more possibilities available for wheelchair users. Which is why we need
Life on Wheels
now more than ever. Gary has infused these pages with a spirit of self-advocacy, empowering people with disabilities to insist on our innate right to realize our full potential. Here, you’ll find inspiration not only for living well, but also for taking a leadership role in knocking down the obstacles that stubbornly stand between you and your dreams. You’ll learn not to limit your challenges, but to challenge your limits!

I strongly believe in your potential. I deeply care about your right to the tools you need to reach that potential. I highly recommend
Life on Wheels
for the inspiration and motivation you need to not just survive, but thrive.

Marilyn Hamilton

Founder

Co-Founder

Life on Wheels
was originally published in 1999 by O’Reilly & Associates. I was proud of the book and especially proud to have received the kind of feedback I had gotten—from readers and reviewers alike.
Life on Wheels
was just the book for people facing changes in their mobility and independence. The late Barry Corbet, editor of
New Mobility
magazine, wrote that
Life on Wheels
was “perhaps the best distillation of the disability experience.”

Life on Wheels
was also the right book for family members and loved ones sharing the experience of a recent disability. As I traveled and spoke, people would tell me what a substantial difference the book made for them. It only took one such expression of appreciation to prove to me that the two-plus years of work in the original writing was entirely worth the effort. You are now holding the updated and refined second edition of
Life on Wheels
published by Demos Health.

I generally write in principle—trying to provide a core understanding of issues and methods so that readers can apply these to their own lives and situations. This book has never been so much about offering specific recommendations or prescriptive guidance (though you’ll find a bit of it here and there) but instead is about empowering with information that helps people make the best choices and find their own way.

At the same time, in the eight years since the book’s first release, I’ve gained a deeper understanding of the disability experience through a wide-ranging involvement in the broader disability community. This was not the case when I first began this project. My connection with the national disability scene has been a tremendous source of insight and information and growth, which I have brought to the updating of this book. So, I have gone through the entire text and refined the language, added a significant phrase of embellishment here and there, struck some material that didn’t make a strong enough point, and rounded things out with new paragraphs and sections. As great as
Life on Wheels
was in its first life, it’s now truly new and improved.

The impetus for the book, though, has changed little. Thousands of people acquire or are born with characteristics that are objectively impairing. They have a “disability,” a word that is increasingly meaningless exactly because it can mean so many different things in so many different people’s lives. The prospect of using a wheelchair will always—naturally and understandably—be a prospect one would not choose. The issue remains: once it becomes your reality, what are the choices? What are the options? This is what
Life on Wheels
answers for you.

The wheelchair is widely viewed as a symbol of illness and loss. Becoming a wheelchair user is 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 disability resist the purchase of a customized wheelchair because they insist they will walk again.

Yet, those who have lived with a disability since childhood experience it as a natural state. They don’t experience disability as a loss, they have not had to adapt to significant changes in the way they function in the world, or they have not had to redefine their potential in the context of their disability. To them—and to the people who have chosen to integrate their disability into their full sense of self—the wheelchair is a treasured tool. They know it makes their life possible.

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 charity—thanks to the ubiquitous image in our culture 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 the extremes of either tragedy or the heroism of people with 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 rather than as the whole people they are.

These beliefs are simply not true. The wheelchair is a tool that enhances quality of life. Wheelchair users are not always ill and are not condemned to a life of no meaning or pleasure. Even for people with life-threatening illness, the right wheels facilitate their ability to be out in the world, continuing their lives, partaking of the many realms of human experience.

All of this entails a simple choice that everyone must make: to live the potential our life has to offer with our disability, or not. Most people arrive at the choice to live, to figure out how it works, to reach out—or fight—for the resources that make it possible. They become accustomed to a new public identity and learn to base how they feel about themselves on their own view rather than adopting the prevailing social view, which they ultimately come to learn is simply wrong.