|Gary Karp has assembled the owners manual that should be delivered with every new wheelchair. This wealth of information offers insight for the newly disabled person, yet is thorough enough to be valuable to those of us who have rolled with pride for years, says Greg Smith, host of the syndicated On A Roll radio program. This is just one of the many praises given to this book.
Karp truly has put together the definitive guide for anyone who uses a wheelchair. Whether youre new to the world of disability or have been dealing with the realities of living life waist-high to the rest of the world for years, this book has something to offer you. The information that is compiled in Life on Wheels can introduce you to the joys of the world of disability-related medical problems and health maintenance or it can offer you new insights on making your home more accessible and dealing with caregivers.
If you are newly disabled, this book is the most important piece of reading material you can get. Karp takes the reader step by step through the first year or so of life with a disability. Discussions on every conceivable topic related to disability make up the majority of this book. Chapters cover such things as wheelchair selection and funding as well as sexuality, reproduction and parenting. The transitions from hospital to home and from home to work are extensively detailed, as is the process of making your current home or apartment more accessible for a chair. Also included are chapters dealing with politics and disability, covering the assisted suicide debate and disability benefits in detail, and a model of the progress of spinal cord research.
This book could also be extremely helpful for families of people with disabilities. Karp gives examples of public reactions to people with disabilities and offers advice on how to deal with these reactions. A family member who has read this book will be much better prepared to help a disabled relative advocate for himself or to advocate on his behalf.
A copy of Life on Wheels should be given to every person, teenager or middle-aged, as soon as they enter a rehab program. The information provided by doctors, therapists and rehab specialists could prove to be indispensable during the first few months of adjusting to this new lifestyle. The conversations with and advice from people with disabilities that are found throughout this book could prove to be indispensable for anyone living life from a seated position. This can be especially true for newly disabled teenagers and young adults who will learn that there are others out there who have had similar experiences and obstacles to overcome. These stories will let them know that they will be able to live a normal life again, with loving relationships, children, and anything else they want out of life.
|Ask me "What's the best book on living with a mobility impairment?" and I'd be deeply torn between Life On Wheels and our own Spinal Network. Why bother to choose? The only sensible answer is that the two are an incomparable combination.
I can't tell you how much I admire Karp's book. Its eleven chapters take you from understanding what happened to you to understanding that it hasn't ruined your life; from keeping yourself healthy to finding healthy relationships; from coping with a changed identity to changing the world to reflect our realities. This is the book I needed when I was injured.
Look for maximum depth on spinal cord injury, but much more than passing relevance to any mobility impairment. In addition to well-researched information, you'll find tough-minded advice, humor, a superb chapter on sexuality, quotes from the right experts and perhaps the best distillation of the disability experience extant.
"There is a huge gap between the way our culture views disability and the truth of the experience," says Karp in his preface to "Life On Wheels." Then he proceeds to prove it. In Karp's cosmos, disability is something that happens, that requires attention and learning, but is only a platform for getting on with your life.
|Life on Wheels According to Karp
Frequently, at the onset of disability, an individual may feel like he or she is the first person to search for solutions to a particular situation. The trial and error method of finding this information is frustrating, wastes time and effort, and is usually ineffective. While the individual may realize that others probably encountered similar problems, he or she soon discovers that there's no single place to find practical information until now. In his book, Life on Wheels, Gary Karp has amassed the most comprehensive information about living with a mobility disability I've found in four decades of living with a spinal cord injury!
Believe me, for people with newly acquired mobility impairments, Life on Wheels is the definitive resource. But his book is not just for people who are newly disabled. Karp has compiled important information in a thoroughly researched and organized book that long-time wheelchair users will also appreciate.
Although Life on Wheels is intended for anyone who uses a wheelchair, the preponderance of information is directed towards people with spinal cord injuries like Karp who has paraplegia. If Karp writes a second edition of Life on Wheels, he may want to provide information about post-polio syndrome, other mobility impairments, and the three-wheeled scooters that many people use to live their lives on wheels.
Nevertheless, whether you're looking for information on accessibility, aging, assistive technology, disability discrimination, health, medicine, rehab, sex, sports, transportation, recreation or wheelchairs, Life on Wheels delivers big time for those who live in the world according to Karp.
Posted 2/11/00, Copyright ©2000
Republished with permission from The Disability News Service, Inc.
|To Your Health
New book on wheelchairs opens eyes to freedoms available.
The last thing most of us want to think about is finding a good wheelchair, or adapting to life in a chair, but for many people an acquired disability or an illness makes such a choice a necessity that cannot be avoided.
For those who are facing the purchase of a wheelchair, or for those who have been using a chair but are not happy with it, there is a wonderful book, "Choosing A Wheelchair; A Guide for Optimal Independence," by Gary Karp that takes on the subject as an exercise in liberation.
Karp, a wheelchair user himself, presents a history of the wheelchair in the first chapter. While this makes for interesting reading on its own, it's clear that Karp is taking the reader through the mental exercise of transforming the wheelchair from a metaphor for limitation to that of a tool for liberation and independence. He describes the locked-in mentality of the company that was the single producer of wheelchairs for most of this century, a company whose management structure no longer made use of disabled managers. The rigidity and distancing from the user that followed allowed for another small independent company to change wheelchair design profoundly and account for an $88 million loss in three years to the former single producer. The concept of disability has changed, and the technology serving that population has responded synergystically.
It's an appropriate place to begin reading about choosing the right wheelchair because Karp is really getting the reader to accept the idea that choosing a wheelchair is about having control of many details that affect your life, and taking that control to move forward.
Once you get into the meat of the subject, "Choosing A Wheelchair" covers every detail and every kind of choice you'll make from the basic one whether to choose a power or manual chair, to tires, casters and suspension systems. This is not gratuitous information, however, because seating choices, wheel height and chair width affect agility, range of motion, and the health of the rider.
For the uninitiated, this book takes a thoughtful approach to what may be a life-changing purchase.
Beyond the purchase of a wheelchair, disabled people face myriad challenges daily, and the book "Life On Wheels; For the Active Wheelchair User," also by Gary Karp, makes the assertion that in spite of it all, there is life on wheels, complex as it might get sometimes, and that it's worth pursuing.
"This book is for anyone who is or will be using a wheelchair for a significant period of time who want to make the most of every moment. It includes those who are able to live independently as well as chair users with more severe disabilities who direct the services of personal assistants and other staff. While the voice of this book is directed to wheelchair users, it is my hope that family, friends, medical workers, and people in public policy roles will read these pages. Perhaps the voice of the book will help you to place yourself in our 'wheels' and help you better understand your role in the lives of chair riders."
"Life On Wheels" is organized so that the reader has a good idea of what kinds of disabilities might lead a person to use a wheelchair, with an emphasis on the conditions that are most likely to allow for some degree of independence. Karp isn't squeamish in his discussions of disabilities, and the information is helpful for those who have wondered about the ramifications of certain conditions but been afraid to ask. The book then proceeds to medical concerns, ways to stay healthy, including the experience of disability.
It has a chapter devoted to selecting a wheelchair, and a chapter on how to make your home life accessible and more convenient.
Karp pays special attention to the options for intimacy and sex - areas that are of major importance to all of us, and which are often not talked about in the context of disability. The book is detailed in its range of practical information, and encouraging in its candor. The chapters on spinal cord research and politics and legislation give a good idea of where treatment might be headed, and the laws that protect the rights of the disabled.
The final chapter, "Getting Out There," looks at getting around physically, using adaptive technology, education and employment, as well as the sports and recreational activities wheelchair users should consider.
Karp's information is interspersed with quotations from people's personal stories that give the book a sense of immediacy that rings true. As you read, you are struck by the fact that the speakers are vibrant, involved and active people, contrary to the image of what our culture has long called invalids.
This review was prepared for the Palo Alto Weekly by the Stanford Health Library.
by Claudette Parmenter
I'll always remember "Sonny," a teenage neighbor who used a wheelchair. I'd visit him on a regular basis after school, anxious to hear his fabulous stories that would enthrall my older siblings and me. I was seven years old then.
Now as I think back on those carefree childhood days of my friendship with Sonny, I realize that how you get from point A to point B doesn't change who you are. And that's the point of two new books: Choosing A Wheelchair" and "Life On Wheels: For the Active Wheelchair User." The author of both books is Gary Karp.
We have our misconceptions about people using wheelchairs. Now that I am daily surrounded by citizends who use chairs, I've come to realize that we also suffer from well-meaning but awkward expressions and intentions, which Karp addresses in his books. He writes: "People with disabilities are not 'broken,' neither are they heroes. People with disabilities are simply human." He goes on to say: "We are not seen fully for who we are, but are excessively defined in the world's eyes by a mistaken conception of the meaning of our disabilities, rather than the deep and universal truth of our souls."
Understandably, his hackles go up when he reads media terms such as "confined to a wheelchair." Rather, he suggests, "I use a wheelchair... I am riding in it, the same way I am driving my new van. I am in it for the moment but I have a life, a whole life, and the chair does not define who I am."
It's an enlightening book that points out that sometimes our good intentions aren't so good when it comes to giving aid to someone using a chair. He points out that he'll frequently hang back when someone moves in front to "help" open a door, because often it's easier for him to open it alone, without dealing with someone who's off balance, straining to open a door.
He devotes a frank, well-reasoned chapter about sexual identity and intimacy, pointing out that people make assumptions and often miss a chance to enjoy a fulfilling relationship.
This book is worthwhile reading for both chair users and for us temporarily able-bodied folks who can better understand our roles in the lives of chair riders.
Subtitled "For the Active Wheelchair User," Life On Wheels is an encyclopedia-style collection of information addressing the what, why, and how of almost all aspects of life for wheelchair users. The book has practical information for all types of wheelchair users, from longtime to new users.
Chapters and subsections address an array of topics from health to lifestyle issues, including rehabilitation, selecting a wheelchair, staying healthy, traveling, adaptive technology, politics and legislation, and intimacy, sex and babies.
The author's firsthand experience resonates throughout the book, especially when it comes to giving specific advice to make daily living easier. Information skews slightly toward people with spinal cord injuries - including a thorough chapter on spinal cord research - but there's plenty of valuable information for those who use wheelchairs for a host of other reasons. Family members, friends, and caregivers will also find this book eye-opening and helpful.