The discussion about Cures has taken a number of directions, but I think one
point has been left out. It is this: When people talk, they are aware of who
’s listening. When I talk about my own interests in medical treatment to
other disability activists I will say different things than when I am
speaking for public consumption.
The reason for this is simple: I don’t believe that the general public will
understand what I say if I speak openly. No matter how carefully I couch my
words, their own ideological biases regarding the stigma of disability will
condition what they hear, like the babel fish from Hitchhiker’s Guide to the
Galaxy. I sometimes think that if I were to complain about my
nearsightedness, my non-disabled audience would somehow manage to interpret
it as a complaint about my paralyzed legs – my wheelchair is the most
salient feature of my existence to someone infected by the stigma of
disability.
I suspect that everyone has something biomedical that they would like to
change about themselves. (I had a girlfriend once who fretted about her
rough elbows.) So it’s likely that disabled people have these concerns, and
it’s even likely that most disabled people even have concerns related to
their impairment that they would like to change. Tom Shakespeare’s “Ouch”
piece sounds as if it’s saying only this: Why don’t we just admit this, like
other people do?
But I don’t think that can be the real message of the piece, and it is
surely not why activists have complained about it.
Here’s why: The non-disabled majority don’t hear disabled people properly
when they talk about medical cures. They will hear us as mourning the
publically stigmatized condition that is our personal tragedy. They think
this not because WE told them so, but because the babel fish told them so.
They (or their babel fish) can’t believe that I’m perfectly happy to travel
in a wheelchair and don’t miss walking at all. So if I were to complain
about (say) pressure sores, the poor little fish has to translate it into a
complaint about paralysis.
When I teach a Disability Studies course (mostly to non-disabled students),
one of the first questions that comes up is what I call the Magic Pill
question – the Cure question. I tell them that I refuse to answer it because
they wouldn’t understand the answer. By the end of the course, some of them
understand that point. But others still write on their final exams something
like “this course has taught me to be sympathetic to handicapped people
because their lives are so hard.”
Sometimes it is impossible to shout louder than the fish.
Medical professionals are especially cocooned within the stigma of
disability. If the Cure is the most important thing to disabled people, then
THEY are the most important people. That’s the problem with Chris Reeve: he
was paid to advocate for the claim that the Cure is the most important thing
in the world for disabled people, and therefore that medical researchers are
the most important people. This made him a well-loved symbol for everyone
with the disability-stigma fish in their ear – the fish had nothing to
translate: the ideology was coming in loud and clear, with no translation
needed.
Just as I do not speak openly to my students about medical treatments that I
would like, I do not speak openly to the general public or (especially)
medical professionals. I do not believe that they will be able to hear me
properly. I actually witnessed this in a room filled with biomedical
ethicists and a few disability rights activists, including Tom Shakespeare.
Tom said approximately what he said in his recent email to the Disability
Research list, except that he put it in terms of choosing whether or not to
have a child. He said that he was satisfied with his stature, but his recent
back problems had led him to decide not to have a child. In other words, he
would not want to have a child who would be likely have serious back
problems. It seemed to me obvious that the biomedical ethicists around the
room had heard something different than I had heard. They heard Tom’s report
as a decision not to have children with achondroplasia, and they nodded
their heads wisely (because Tom had confirmed one of the basic principles of
biomedical ethics). I heard Tom’s report as a decision not to have children
who were likely to have serious back problems. We had different fish in our
ears.
What I find problematic about Tom’s “Ouch” piece is not that it advocates
medical research, or even that it is written with the purpose of changing
disability activists’ minds. (I’ve never heard a disability activist
actually say that medical research should be stopped anyhow. Maybe Tom has.
Or maybe he’s simplifying their position to fit nicely within a short
journalistic report.)
The problem I see with Tom’s piece is that it appears to be written to a
non-disabled audience ABOUT disability activists. (Nothwithstanding its
appearance on a BBC-disability site.) It will have little or no effect on
disability activists, simply because the piece gives such a superficial
explanation of why these activists opposed Reeve in the first place. The
primary effect of the piece will probably be a confirmation of the
intuitions of those medical researchers Tom calls “my scientific colleagues
in Newcastle.”
Those colleagues need no longer struggle trying to understand those
foreign-sounding objections that disability activists have made to the
claims of medical utopians. Tom has explained why, and he’s done so in
language they can easily understand.
Ron
Ron Amundson
University of Hawaii at Hilo
Hilo, HI 96720
________________End of message______________________
Archives and tools for the Disability-Research Discussion List
are now located at:
www.jiscmail.ac.uk/lists/disability-research.html
You can JOIN or LEAVE the list from this web page.
|