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Cure `em or Kill `em


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.

 

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