An Interview with Author Gary Karp
by Bonnie Allen
- What group of people did you
particularly have in mind when you wrote Life on Wheels?
- 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.
- What's the most important thing you
want to convey to people facing a newly acquired disability?
- 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.
- What are some of these inaccurate
- 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operating on outdated models of what the disability experience is.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
- What do you think is unique about your
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.
- How do you think your background and
experience in ergonomics helped you with this book?
- 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
- So it seems that ergonomics is kind of
front and center, if you're spending a lot of time in a chair in the
- 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
- What does legislation like the ADA
(Americans with Disabilities Act) say about society's willingness to
- 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.
- Can you provide a little historical
perspective on the disability rights movement?
- 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.
- Not by being taken care of!
- 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.
- What effect do you think Franklin D.
Roosevelt's disability had on the history of disability rights?
- 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
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
- What further changes would you like to
see happen in terms of disability rights?
- 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
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
- Employment is power. It's hard to be
dismissive to a person who's pulling down $80,000 a year.
- 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
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.
- 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.
- 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.
- Was your experience typical for people
with new disabilities?
- 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.
I also want the book to be a tool to help people do that.
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