Cynthia Peters
Disability
rights activists have been waiting for Christopher Reeve to get over his
“I-will-walk-again” thing. But it’s been 5 years since the actor, best
known for his role as “Superman,” became a quadriplegic after a horse-riding
accident, and he’s showing no sign of relaxing his efforts to support the
search for a cure.
Some
might consider it admirable that the actor uses his fame to promote a cure, and
that he travels the country as a motivational speaker, inspiring others to train
their hopes on that glorious day in the future when science delivers the
technology that will allow them to walk again. But others, for a number of
reasons, question Reeve’s focus on a high-priced cure.
First,
the all-out search for a cure implies that there is no productive or fulfilling
way to live your life with a disability. While you may not wish for deafness,
paralysis or cerebral palsy, it may also be true that having those conditions
may not be the defining negative feature of your life – the one thing about
yourself that you should reverse at all costs. Living in a culture with rigid
definitions of what is “normal,” and in a society that erects class, race,
sex and ability-related barriers can be much more debilitating than physical
attributes that stray from the “norm.”
Activists
from the deaf community have long celebrated deaf culture and sign language –
not as sorry second-bests to what is available in the “real” hearing world,
but as rich and fulfilling in themselves.
The
journalist John Hockenberry wrote in his book, Moving Violations, that everyone
wondered if he felt suicidal after the car accident that left him paralyzed.
“They wanted their view of the simple awfulness of disability to be confirmed
by my experience. The truth is, I never once contemplated suicide. … Far from
being a blank wall of misery, my body now presented an intriguing puzzle of
great depth and texture. … I was inside an experience that felt universally
human. … From the beginning, disability taught that life could be reinvented.
… The physical dimensions of life could be created, like poetry; they were not
imposed by some celestial landlord. Life was more than renting some protoplasm
to walk around in.”
Lisa
Blumberg wrote in the disability rights magazine, Ragged Edge, that cerebral
palsy left her walking with “arms flying, knocked kneed, right leg turned in,
about half the speed of an ordinary person.” But she made her way around the
Wellesley College campus just fine. Still, doctors wanted to “correct” her
legs with surgery, giving her a more normal appearance. After the surgery,
Blumberg’s right leg “felt like a limp yet rigid piece of spaghetti.” She
added, “The surgery diminished my ability to shift my weight from side to
side. I was slowed way down.” The operation to make her more normal “did not
obliterate [her] future but made [her] life harder – physically, emotionally
and socially.”
Second,
focusing on a “cure” turns people’s attention away from the day-to-day
obstacles people with disabilities face. Front page color photographs of
Christopher Reeve’s attendance at the recent biotechnology and genetics
conference in Boston brought attention to his exhortation to scientists: “Make
a profit. … Conduct business. Give [disabled people] hope.” The Globe
reports that Reeve has “thrown himself into the role of a constant spur to
science, raising unprecedented amounts of money for spinal cord injury research
and repeating his hope to walk before his 50th birthday in 2003.” Reeve was
drawn to work with the American Paralysis Association because “they are
dedicated solely to finding a cure for paralysis, nothing less. They’re not into
lower sidewalks and better wheelchairs,” according to Pat Williams in Electric
Edge.
Meanwhile,
people like Brandeis graduate student John Kelly, who is a quadriplegic,
struggle with systemic ills that, with a little creativity and a shift in
priorities, could be more easily cured and could make sweeping improvements in
many more people’s lives. “The problem besetting most people with
disabilities,” says Kelly, “is poverty and oppression, not the wait for a
cure.”
According
to a 1998 National Organization on Disability/Harris survey of Americans with
disabilities, Kelly has a point: Fully a third (34%) of adults with disabilities
live in households with total income of $15,000 or less, compared to only 12% of
those without disabilities. Only 29% of disabled persons of working age (18-64)
work full or part-time, compared to 79% of the non-disabled population. Of those
with disabilities of working age who are not working, 72% say that they would
prefer to work. Approximately one in five (20%) of adults with disabilities have
not completed high school compared to 9% of adults with no disabilities.
Given
these dire circumstances of poverty, unemployment, and incomplete education, one
might expect the media spotlight to land on these issues occasionally. But, when
it comes to disability, “the two men who can at the moment most easily attract
media attention [are] Christopher Reeve and Jack Kevorkian?” As disability
historian Paul Longmore asks in Ragged Edge, “Could it be that currently the
media is framing disability issues as ‘cure `em or kill `em?’”
Some
say it makes more sense to refer to the so-called “normal” as the
“temporarily abled.” Indeed, most of us will experience disability in
ourselves or in someone close to us at some point in our lives. All we have to
do, for example, is to be lucky enough to get old – a condition which is
likely to include some physical limitations. Treatments and cures that address
isolated physical conditions may benefit some people, but they should not be
pursued at the expense of measures that address economic injustice, improve
all-around quality of life, remove obstacles to full participation on the part
of everyone, and move us to broaden what we consider normal, healthy and
fulfilling ways of being in the world.
