The following excerpt is taken from Chapter
5 of Life on Wheels: For the Active Wheelchair User, by Gary Karp,
copyright 1999, published by O'Reilly & Associates, Inc.
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article is meant to educate and should not be used as an
alternative for professional medical care.
A significant aspect of being a wheelchair user is the conspicuous quality
of it. People with disabilities are aware of being looked at and set apart as
wheelchair users and are often self-conscious about their bodies. For this
woman with Charcot-Marie Tooth muscular dystrophy:
A big part of me wants to say "screw it" to others and what they see
and think so I can wear whatever I want. A bigger part of me, though, is very
affected by the way others see the outer me, and hates negative scrutiny. I
thought I'd be past that at thirty-three years, but I'm not. So, to keep me
more comfortable inside, I wear my sandals, high tops, long skirts, dresses,
and jeans, and only sunbathe in the privacy of my back yard. I really have no
desire, anymore, to wear shorts or a swimsuit around others, so I will continue
to keep my skinny bird-legs hidden out of the sight of others, except myself,
my husband, and our cats and dogs!
You face all of the attitudes people have about disability whenever you go
out in public. People hold doors for you, offer to carry your groceries, grab
their children from your path, try to relate to you with stories of other
disabled people they know, or speak to your companions on your behalf rather
than directly to you. In daily life, these issues are a constant presence, and
as a chair user you need to develop your own style of dealing with these
As noted in the summary of the 1998 National Organization on
Disability/Harris Survey of Americans with Disabilities:
Many people with disabilities continue to feel that the rest of the population
treats them as if they are different, and to have a strong sense of common
identity with other people with disabilities. Fewer than half (45%) of adults
with disabilities say that people generally treat them as an equal after they
learn they have a disability.1
There is work to do to get beyond the emotions these public contacts can
bring up. You may not want others to see you as disabled--at least not in the
negative image so many people associate with disability. You may want them to
know you are really one of them and perhaps to know that you were once
able-bodied too. You may be angered by the sometimes patronizing attitudes you
encounter and by being suddenly treated as needy, unable, and tragic.
There are many new feelings to confront in your early forays into public.
What may seem overwhelming at first--potentially to the point of making you not
want to go out--becomes familiar. You will learn how to let people have their
beliefs and find you don't need to care how they see you. You can demonstrate
through your attitude that they don't need to pity you--or make a hero of you.
You will learn to check up on accessibility, and become familiar with what
entrances to use at common locations like movie theaters or shops. These
adaptive tools will help you level your emotions so that your attention can
return to the primary tasks of your life--work, play, family, community, love,
Teen and early adult years can be very difficult for people disabled since
birth or with a disability acquired as a child. As children they may have been
very well supported by their families in how to face the attitudes that the
wider culture feels about disability. Disability psychologist Carol Gill
I think that a lot of us who were disabled early in life grew up thinking of
ourselves as pretty okay and pretty normal. At some point in our lives we get
disabused of that notion. Our peers and others in society begin to treat us
abnormally. When we are school age, we don't get picked for the team, people
make fun of us. For example, it intensifies in the teen years when dating
The unfortunate truth is that there are many deeply embedded attitudes in
the culture about people with disabilities. People will usually be
uncomfortable unless they have already had direct experience with a disabled
person. Your presence might make them nervous at first. They'll be wondering if
there's some special way to treat you or if they'll be expected to help in some
way. They might have an association with someone else, perhaps a parent or
grandparent, who used a wheelchair at a time when they were very ill. They
might be projecting themselves into your experience, imagining it as a horrible
way to live. All of these attitudes are significant obstacles to your ability
to make a connection with that person. Once they come to know you well, and
witness the kind of life that is possible, they find out that your personality
shines through even the most severe disability.
Beliefs about disability are planted very early in life. It's evident from
the experience of any chair rider in any shopping mall in America. As you wheel
through the crowd, parents frantically pull their children out of your path. Of
course, parents naturally want to protect their child from a collision and are
likely trying to be considerate so you don't have to maneuver around the child.
But the child gets the message to stay away from you.
Another scenario is more telling. Many children will innocently come up to
you and ask why you are in a wheelchair. They don't yet know that it is
"rude" to ask. The child's interest makes the parent very
uncomfortable, and that gets communicated. Irving Zola wrote:
The wheelchair is quite visible and of great interest to the child, but he or
she is taught to ignore it. A near universal complaint is, "Why can't
people see me as someone who has a handicap rather than someone who
is handicapped?" Young children first perceive it that way but
are quickly socialized out of it.
Children are not mature enough to understand these boundaries, and there is
a danger of communicating through your actions that people with disabilities
are unapproachable. You can be in the delicate position of wanting to
demonstrate that disability is a feature of many people's lives and does not
preclude a full life, while at the same time being entitled to your privacy and
A child can't distinguish whether I'm in a bad mood, so I am never bothered by
a child's questions. I have a "spinal cord is like a telephone
system" story that I use. An adult needs to use some judgment, but most of
the time I am happy to have an adult approach me in public and ask why I wheel.
I'm glad to explain it, but I also try to give a picture of my life as a
Sometimes parents will give the child their own answers:
I cannot count the times I have been in public and have heard a parent telling
their children ridiculous things to explain why I am in a wheelchair. Things
like "Her legs are tired," "She is taking a break from
walking," or "She's resting by sitting down." I always would
rather have the parents have their kids approach me in these situations with
their questions so I could tell them the truth.
How you respond to being asked about your disability is a case-by-case
question. You will have to find your own balance. You can decline politely, by
saying that it is a private matter, and that you reserve discussions about
such things to people you know better. The more someone gets to know you, the
more appropriate it becomes to ask such questions. As Carol Gill says, "If
you have an intimate relationship, you're allowed to ask more intimate
Just as often, people will delay or avoid asking about your disability:
In a company where I worked for eight years, there were people who never knew
why I wheeled. They never had the courage to ask. Many, I expect, assumed I was
disabled since birth, or had been in the Vietnam war, neither of which is
Attorney Deborah Kaplan is quadriplegic, but is able to stand, has full
sensation, and is a mother. She also has more than twenty-five years of
disability activism behind her. She says:
By and large, it isn't so much a stereotype as the fact that we just really
scare people. People don't want to have to think about disability. It's very
personal. It's very deep-rooted, I think almost cellular. We remind people that
we exist in a soft, vulnerable body, and that they're vulnerable. People don't
like to be reminded of that. That shows up when somebody looks at my
résumé and they go, "Oh!" What are they so surprised
about? I've been on every commission in the world and I travel all the time.
They're telling me something about what their expectations
The more severe or visible the disability, the larger the attitudinal
obstacle you're likely to encounter. Notes Carol Gill:
If there is going to be a person with a disability who is accepted by society
first, it's going to be the young white male who is okay from the chest up. But
that's not the majority of the disabled population.
I really feel I have made a contribution. Not only to the disability community,
but to society and to my neighbors and everybody else. The work that I do. My
son that I raised. I am a valuable person, but I think that the average person
who sees me would think my life is not tenable. I use a ventilator, I need help
with all activities of daily living, and I feel that if I hit a significant
medical crisis I am much less likely to receive aggressive measures to protect
my life than someone else.
Professor Zola granted the value of his family and support system in
adapting to polio and subsequent auto accident injuries, while at the same time
condemning societal attitudes:
Had my family been poorer, less assertive, my friends fewer and less caring, my
champions less willing to fight the system, then all my personal strengths
would have been for naught. On the other hand, if we lived in a less healthist,
capitalist, and hierarchical society which spent less time finding ways to
exclude and disenfranchise people and more time finding ways to include and
enhance the potentialities of everyone, then there wouldn't have been so much
for me to overcome.3
But appearances are not the only thing that count. Says psychologist
A lot of the people we do hit it off with in the nondisabled community tend to
be people who are more open. Sometimes they have what I would consider deeper
values, and are people who would critique the same superficial American values
that our community does. It gives us a common bond.
Perhaps your interaction with the nondisabled is a chance for them to change
as they learn from the experience. Perhaps, as they encounter the truth of a
person living with a disability, they can adjust their beliefs after seeing the
I've heard from many people who say that after getting to know me their fears
about people with disabilities subsided, that it was a chance to overcome their
misconceptions. I find that satisfying.
You can also hope that children will grow up knowing better because they are
increasingly living in a world where people with disabilities are visible,
active, and part of their lives in meaningful ways.
You have an important contribution to make to this society. You are in a
position to teach that focusing exclusively on narrow standards of physical
beauty, youth, and conventional athleticism is a problem for all of us. By
continuing to demonstrate that you are not looking to be cared for, but to be
treated as a whole, self-determining person with the right to make your own
decisions and have a full life, society gets the chance to develop values that
My own philosophy is that there is one thing you show the outside world: pride.
On the other hand, living with limitations is sort of a drag. That's the
reality. But you don't go shouting that to everyone in the world or it just
encourages all their stupid thinking.
Carol Gill expresses her view:
I think our Western world in many ways is in a moral crisis. Some of the values
of the disability world can really help the greater world in sorting out this
moral dilemma--to look at what's important and develop a whole new slate around
what it means to be human. I think we have an important lesson to teach the
world because we have to deal with our own acid test of what's human. I'm an
idealist, too. I'm hoping we will win out and be heard.
- Risher, The 1998 N.O.D./Harris Survey of Americans with
- Irving Kenneth Zola, Missing Pieces: A Chronicle of Living with a
Disability (Philadelphia: Temple University Press, 1982), 200.
- Zola, Missing Pieces, 235.