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Life on Wheels

Choosing a Wheelchair

[O]ur culture sees disability in such an inaccurate and negative way....[O]nce it happens it doesn't have to be the nightmarish dependent experience that the culture tends to see it as.

People with all levels of disabilities can function now at levels of activity and independence that, only recently, were not possible.

There's a common tendency--and I still catch myself doing it after 26 years and having written the book--to want to demonstrate to the world that you're not the "handicapped" person the culture imagines you are.

To someone who's walking, a wheelchair seems like confinement. That's the phrase you hear: confined to a wheelchair or wheelchair-bound. But it's a backward perspective, because when you can't walk, the wheelchair isn't confining; it's liberating, it's what makes it possible for you to function.

I would like to see major changes in housing. There are no codes whatsoever that provide for some amount of fully accessible housing in the single family housing stock.

In rehab I also had models of people who were active. I saw it was just a matter of finding out what the mechanics of it were: how do they do this? And I had faith that I was going to do it too.

An Interview with Author Gary Karp

by Bonnie Allen
Declining to feed the tragic, pathetic, or heroic views of disability, Life on Wheels: For the Active Wheelchair User author Gary Karp emphasizes "the largely normal daily life that many chair riders experience." The guiding principle of rehabilitation is, as he tells his readers, "your right to pursue your interests and convictions."

"One of the strengths of the book is that he normalizes the experience," said editor Linda Lamb of Karp's approach. Life on Wheels is a handbook on the physical, emotional, social, political, and employment-related issues of disability, as well as the parameters of choosing and using a wheelchair.

Opening with a chapter on the kinds of traumas and illnesses that lead to wheelchair use, Karp goes on to make sense of rehabilitation, medical and health concerns, assistance services, and home access. He explores emotional and societal responses to disability, delving into sexuality, family issues, mental health, fitness, athletics, and travel, with attention to individual levels of disability and how to accommodate each. There's an exhaustive bibliography of publications and Web sites.

When it comes to subject matter, Karp has walked the walk, or perhaps "rolled the roll" is more fitting. Karp has been paraplegic since he fell out of a tree in 1973 at the age of 18. College educated in architecture, he was a graphic designer and manager until repetitive stress injuries turned him toward ergonomics, to eventually start his own ergonomics consulting business. An accomplished musician, juggler, and public speaker, Karp has been in front of audiences since his teens.

Lamb first met Karp in his capacity as an ergonomics consultant to O'Reilly & Associates. At that meeting Tim O'Reilly was impressed with the ease with which Karp got himself and his wheelchair in and out of his small car. Tim remarked, "If we ever do a book on dealing with wheelchairs, you should write it for us."

Life on Wheels is in the proud O'Reilly tradition of books by authors who have learned to do something very well and have decided to share their hard-won knowledge.

Allen:
What group of people did you particularly have in mind when you wrote Life on Wheels?
Karp:
I want the whole world to read the book! But first and foremost it's targeted to people who are dealing with a recently acquired disability. In addition, I think that anybody who's using a chair has something to learn from it. With my 20 plus years of wheeling, I learned a great deal from writing the book. It's of use to families, friends, the rehab community, and also the medical community, because chair users, like everyone else, still have general medical issues and need to go to a general practitioner. I also hope that people in the service community--airlines, hotels--will read it.

Allen:
What's the most important thing you want to convey to people facing a newly acquired disability?

Karp:
I'm especially interested in trying to help them get past the beliefs they carry into the disability experience because our culture sees disability in such an inaccurate and negative way. Not that disability is something that you'd wish for anybody, but the fact is, once it happens it doesn't have to be the nightmarish dependent experience that the culture tends to see it as. Their process of adapting is slowed down by these inaccurate beliefs, which are really imposed by the culture and based on a lot of different things.

Allen:
What are some of these inaccurate beliefs?

Karp:
There's a really old belief that goes back to the idea of disability as punishment by God or association with the devil. You can find biblical quotes along those lines, and during times of plague, in medieval times, people with disabilities tended to be made scapegoats and blamed as carriers of plague.

More recently, the culture is still operating on outdated models of what the disability experience is. People with all levels of disabilities can function now at levels of activity and independence that, only recently, were not possible. For one thing, people are living who wouldn't have survived, including me. Only 60 or so years ago, there wouldn't have been the surgery to repair my spine. There wouldn't have been ways to control bladder and kidney infections, which were chronic with spinal cord injury. The insurance tables actually used to assume a shorter life span for a paraplegic. That's no longer true.

Wheelchair design has come a very long way in only the last twenty years. Manual wheelchairs are highly customized, lightweight, well-engineered, and attractive. Power wheelchairs are very sophisticated, with quiet, direct-drive motors, and computer-based controllers that can set maximum acceleration and deceleration, among other things. Cushion design has advanced so people can sit much longer without risk of pressure sores. All of these things add up to a substantial increase in the ability to be active, independent, and healthy.

Another belief is dependency--or to put it another way, the inability to be independent. Let's take my example of having a spinal cord injury and being paraplegic. My independence relies a great deal on my ability to build upper body strength, from learning basic skills like opening doors and being able to transfer myself in and out of the wheelchair, being able to drive. There's a skill set that makes independence possible. For somebody with a more significant impairment, independence becomes a matter of their ability to access personal assistance, as well as technological tools like adaptive computing, the internet, and remote control devices.

And I make a point about personal assistants, that the culture always sees that as care, attendant care. But that's not what it is. People who are quadriplegic with little if any upper extremity use employ services to assist them to dress, to get in and out of the wheelchair, to have careers and active and full lives. Rather than being taken care of, they're using personal assistance services as a tool. But they're still in control.

Allen:
What do you think is unique about your book?

Karp:
Life on Wheels is the first book that offers a unified and comprehensive overview of the disability experience. It has a consistent voice, it's readable, it doesn't stray into being overly technical. I made a real effort to be objective, to be informative. I didn't want it to be an angry book about how the world doesn't understand disability. I didn't want it to be in a new-agey tone--"Oh, life can be wonderful, you have an opportunity to learn from your experience"--though there's truth in that. I worked very hard to say here's how it works and here's how it's done. I'm really proud to feel that I succeeded in doing that.

Allen:
How do you think your background and experience in ergonomics helped you with this book?

Karp:
Ergonomics is about being comfortable, and of course the work that I do with ergonomics is mostly for people who are working on computers, but it still applies to someone using a wheelchair. If you're not comfortable, you're wasting energy and potentially straining tissues to the point of injury. And the last thing anyone who uses a chair to function can afford is unnecessary fatigue or repetitive strain injuries.

Ergonomics comes into play in guiding people to get the right chair that supports them properly so they don't waste their energy or strain their tissues having to carry their own body, or risk major problems, like spinal curvature, from poor posture. When you can't use your legs to support yourself, it's very possible to carry a lot of tension in your upper body unless you're well supported. In the case of a manual chair, having the right one has a lot to do with how easily you can push it. For instance, there was a guy in my neighborhood who used a chair. He was slumped. He couldn't get his arms into the push. I kept wanting to get him over to my place, get him out of the chair, and adjust it.

Allen:
So it seems that ergonomics is kind of front and center, if you're spending a lot of time in a chair in the same position.

Karp:
Absolutely. It has a lot to do with quality of life. Choosing the right equipment, having it properly adjusted, and having the right skills. That's why there's a portion of the book about wheeling skills. There's a common tendency--and I still catch myself doing it after 26 years and having written the book--to want to demonstrate to the world that you're not the "handicapped" person the culture imagines you are. There's a strong temptation to want to overcompensate with your public image by being a "hotshot" wheeler. Obviously, I have much more awareness now than I used to, but I see lots of people, especially in the early stages, who do this. They're wheeling fast, they're doing wheelies, they're jumping curbs, with a kind of excessive compulsion. You know, all of those skills have their place, but I realized at some point that I was really wasting my energy trying to show off in the wheelchair.

So, for myself, I'm trying to achieve more and more balance--taking my time, being measured in how I use my body, being conscious of where I am in space and how I use a chair. I love the part in my book called "Zen wheeling." It's a meditative kind of thing to really develop this refined relationship with the wheelchair, how you move in space, your sense of the terrain, a sort of symbiotic integration with the chair. Wheeling becomes very refined. People become very elegant in how they move.

Allen:
What does legislation like the ADA (Americans with Disabilities Act) say about society's willingness to accommodate disability?

Karp:
This is really about civil rights, and it's important to me that people not see these things as doing us any favors. When people find out that I can drive, and about the other measures that make the world accessible for me, it's common for them to say, "Oh, isn't that wonderful for you?" as if it's a gift from society. People in the disability community don't appreciate that point of view. Being prevented from being able to have choice and control and use their potential was--and remains--a form of oppression for them. That's why all of this is couched in terms of civil rights.

Allen:
Can you provide a little historical perspective on the disability rights movement?

Karp:
Believe it or not, the ADA just turned nine. So there's a lot of effort to prepare for the year 2000 10-year ADA celebration.

A lot of disability history owes itself to the polio epidemic of the forties and early fifties. Suddenly we had this population of people with various degrees of paralysis left over from polio. A lot of the people who came out of the polio experience blazed the path and just did whatever it took to have their lives.

Allen:
Not by being taken care of!
Karp:
Exactly. So the modern disability rights movement really has its roots in three populations. One is that polio population. Another is the parents of kids with disabilities. That's where the Muscular Dystrophy Association originated. Parents wanted to make a life for their kids, to get their kids in school and so on, and so they became advocates and started an organization. Now those kids are grown up, have educations, and are out there being political and active.

And then there were the veterans. In previous wars, people with spinal cord injuries did not survive. But with World War II there were sulfa drugs to manage infections, the development of plastics, and techniques that allowed catheterization for managing the bladder, and all of a sudden you had a lot more people surviving who were chair users. And you had the beginning of the rehabilitation movement, which emphasized preparing people for activity rather than putting them someplace and taking care of them. So these three populations of people were the beginning of the modern disability rights movement.

Allen:
What effect do you think Franklin D. Roosevelt's disability had on the history of disability rights?

Karp:
He's a very interesting story. He had an impact on the rehabilitation movement. He had a favorite place called Georgia Hot Springs that he went to and eventually bought. To this day it's a rehabilitation facility. Behind the scenes he supported physicians who promoted the philosophy of rehabilitation to help people achieve independence. He also promoted social security benefits for people with disabilities. He didn't achieve them while he was in office, but eventually that did happen.

But politically he didn't want it to be apparent that he couldn't walk. He was afraid it would compromise his ability to be an effective President and to get reelected. So his handlers would do these demonstrations out in public that made it look like he was less paralyzed than he really was. He walked, wearing heavy braces, with the aid of secret service agents or his son. They practiced so it would look like he was walking with a cane and they just gently had their hand at his elbow, when he was actually putting a lot of weight on them and it was a tremendous effort. Part of the trick was to keep his helpers smiling!

He and Eleanor had a system when they had a dinner party. He would hold court at the head of the table--he was a brilliant conversationalist and storyteller--and then when the meal was over, everybody would adjourn to another room downstairs in the White House. Eleanor would escort everybody down this ceremonial stairway that had a number of historic paintings along it, and she would stop at each one to tell them the story of the painting. And that gave FDR the time he needed to get in his wheelchair, go down the elevator and get himself situated, so by the time everybody got there, he was sitting in his comfy chair, the wheelchair nowhere to be seen.

So there was a lot of effort to hide his condition. It's unfortunate that he didn't have more impact on this cultural view of what disability is about, but maybe the time was just too early. After he was gone they took down all the ramps, even at Hyde Park, his old home. There was a period--even after it was opened to the public--when you couldn't get in there with a wheelchair.

Allen:
What further changes would you like to see happen in terms of disability rights?

Karp:
I want our society to update its understanding of what this experience is. Not only so that when we're out in the world we won't be treated in patronizing ways, but so that we can have access to employment. And that's a big problem. A Harris Survey in 1998, sponsored by the National Organization on Disability, a lobbying and policy research organization in Washington, D.C., found that only 26 percent of all people with disabilities were working full or part-time. Of the remainder who weren't working, 72 percent wanted to be.

I suspect that a portion of that is a matter of hiring discrimination. Not because employers are prejudiced against people who have disabilities, but because they don't understand how it's possible for people with disabilities to adapt and do the job, because they can't imagine how they themselves would do it. They don't know what the skills are, what the internal adaptation is.

Let's take the wheelchair. To someone who's walking, a wheelchair seems like confinement. That's the phrase you hear: confined to a wheelchair or wheelchair-bound. But it's a backward perspective, because when you can't walk, the wheelchair isn't confining; it's liberating, it's what makes it possible for you to function. So in terms of employment, I think a lot of people don't get hired because employers project their own limited perspective.

Allen:
Employment is power. It's hard to be dismissive to a person who's pulling down $80,000 a year.

Karp:
Yes, I think that is really the core of all of it. It's the core of how we're treated, how the public interacts with people, policymaking at all levels. From cities that still resist getting up-to-date with cutting all their curbs, up to legislation in the federal government.

There are two really critical pieces of legislation at play right now. One of them is to reform social security. Right now, when people collect disability they become eligible for Medicare. If they went back to work, odds are they wouldn't get medical coverage. So people can't afford to go back to work because they can't afford to surrender their Medicare, particularly since many of the jobs they might get are low paying or part-time.

The legislation that's in Congress right now is designed to let people work without losing their Medicare coverage. The system currently provides for a trial work period where you can remain on disability and Medicare, but beyond that it's all over. And so the legislation is to let people keep their medical coverage. In some cases maybe they buy in and pay a premium, and in other cases they just stay on. And that isn't going to cost the system more money. It means that even though they stay on Medicare, they won't be collecting the disability benefit. And eventually many of them will get off Medicare all together.

Another bill has to do with Medicaid. There are a lot of people in nursing homes because Medicaid policy makes it very difficult for them to get their assistance services in the community. It's called MiCASSA-the Medicaid Community Assistant Services and Support Act. MiCASSA's trying to reform Medicaid to require states to make funds available for people to be able to live in the community. This is a tie-in to the ADA, which says that people are to get services in the most integrated setting possible.

There was just a Supreme Court decision that supported the right of two women in Georgia who had mental disabilities to get out of an institution. They were able to demonstrate that they could be supported by services in the community, and the Supreme Court agreed that the state of Georgia should be required to provide those services based on the ADA.

And I would like to see major changes in housing. There are no codes whatsoever that provide for some amount of fully accessible housing in the single family housing stock. It is extremely difficult to find good housing, especially since so many people with disabilities live in households with incomes under $15,000. The lack of access to, from, and in the home is extremely limiting.

To me, it all comes back to attitude, because policymakers are also functioning on these outdated models. And that has a lot of impact on people's lives.

Allen:
I want to look at your own experience a little bit. It would be hard to imagine that you didn't bring some of those beliefs with you when your disability happened to you.

Karp:
I was fortunate in a few ways. Number one, I was 18, so I think I was fresher for the experience. But also I had good denial skills! It didn't occur to me that I couldn't do it. My family also saw it that way. So I didn't have anybody treating me as though I was going to have to be taken care of. As a result, I didn't doubt that I was going to have an active life.

In rehab I also had models of people who were active. I saw it was just a matter of finding out what the mechanics of it were: how do they do this? And I had faith that I was going to do it too. The attitude of the therapists I worked with in rehab had a lot to do with it. It was hard work, but we had fun and it was always based on the premise that you're going to get out there and function. I lifted weights and did a tremendous amount of intensive therapy. I learned all the wheelchair skills and all the various clinical details that I had to deal with--getting dressed, transferring in and out of the chair, and so on.

Allen:
Was your experience typical for people with new disabilities?

Karp:
Rehabilitation has changed, and this is something I was disappointed to find out about. I spent 6 weeks in a general hospital to recover medically and stabilize from the surgery that repaired my spine. And then I spent 7 weeks building strength, optimizing my upper body balance and learning various skills. And having the chance just to integrate this new identity, this new sense of self: not being able to walk. So I had 13 weeks from the date of injury. At the time I was told I got out fast.

Now, it's very common for people with my level of injury to be back out in the world in 4 or 5 weeks. They get pushed through the system fast, and it is now the norm to use rods to stabilize the spine so people can be active soon after surgery--which is a complicated issue, with good and bad aspects. There's also a lot of pressure from the managed-care system to get people on rehab soon. It's unfortunate, because they don't get the chance to adjust, to develop as much strength as I did. When they get out into the world, they're not as prepared. And though very often they continue to go back for outpatient therapy, they have to do a lot of it on their own.

People with recent disabilities are an important audience for this book. They need to know that there's a lot more they can still accomplish; this is not where they're going to be in another year. If they can independently continue to do the work of getting strong and of learning as much as they can about all the resources available for how to adapt and function in the world, their life will be much better than it is after that short rehab. And I want the book to be a tool to help people do that.


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