It's okay to be disabled
Most nondisabled people just don't get it!
At least that's what some disability rights activists think.
During a recent White House gathering to celebrate the fourth
anniversary of the Americans With Disabilities Act and rally for
the President's health-care plan, Hillary Rodham Clinton spoke of
the importance of disease prevention and biomedical research.
Some of the estimated 1,000 people with disabilities assembled on
the South Lawn took exception to her words. They interpreted her
message this way: Health-care reform would prevent people from
becoming disabled or prevent them from being born in the first
place. "She was saying it would be better if disabled people
didn't exist!" says Cyndi Jones, publisher of the disability
magazine Mainstream. "But that's not where we're coming from.
There's a growing understanding in the disability community that
it's all right to be disabled, that it's a natural part of life."
The idea that being disabled is a good thing may seem bizarre,
far-fetched at best. But the celebration of being disabled is the
very core of the new disability rights movement. Wouldn't Jones
eagerly swallow a magic pill that would eradicate the lingering
paralysis of her childhood polio and allow her to walk again?
"No!" she says emphatically. And many others share her viewpoint.
That's not to deny that being disabled is difficult. For Jones,
there is the likelihood that her muscles will further deteriorate
with age. Yet as she sees it, "The main thing disabled people
need to do is claim their disability, to feel okay about it. Even
if you don't like the way society treats you, it Us part of your
experience, of how you come to be who you are."
In another sign of militancy among the disabled, many now disdain
the traditional role model of the heroic disabled person.
Rejected are the super-performers who surmount great challenges,
like the paraplegic climber who scales a Yosemite mountain or the
blind sailor who attempts to solo the Atlantic Ocean. Many people
who have disabilities tend to derisively dismiss such
overachievers as "super-crips." Fawning media and movie
portrayals of them, Jones complains, suggest that disabled people
are deserving of society's respect only when they can put others
at ease by making their disabilities seem irrelevant. They argue
that such extraordinary feats, although laudable, do not reflect
the day-to-day challenges most disabled people face -- challenges
that may be as simple as finding a bus with a wheelchair lift in
order to get to work.
Worse, society's glorification of such exceptions suggests that
disabled people deserve pity -- instead of respect -- unless they
prove themselves capable of overcoming their physical limitations
in an equally spectacular manner.
People with disabilities instead are redefining themselves and
saying it's okay to be disabled. Mary Johnson, former editor of
The Disability Rag & ReSource, the outspoken magazine of the
disability rights movement, says the best analogy may be with gay
rights. Just as homosexuals in the early 1970s rejected the
"stigma" of being gay, she says, disabled people are saying there
is nothing sad or shameful about their condition. They are taking
pride in their identity as being disabled -- parading it instead
of closeting it.
Even wheelchair design reflects this new self-pride. Marilyn
Hamilton became a paraplegic in a hang-gliding accident and then
co-founded Quickie, a company that revolutionized wheelchairs.
The firm made the chairs high-performance, lightweight, colorful,
and fully customized instead of heavy and institutional. That
stylishness says reassuringly that it's okay, it can even be
cool, to be in a chair. "If you can't stand up," Hamilton likes
to say, "stand out." -- J.P.S.