Ron,
thank you very much for clearing away some of the smoke screens and mirrors
that have been erected in this discussion, most (though not all) by Tom
himself, and couched in remarks like: "I don't say or write things because
of my academic position, or to get acceptance from the mainstream world, or
because anyone is paying me"; "Challenging the mainstream view has caused me
nothing but stress, abuse and isolation." As you have aptly pointed out,
Tom is not "challenging the mainstream view" at all, but rather endorsing
and promoting it, and he is being paid to do so.
Unfortunately, some of the people in this discussion have nostalgia for a
time when Tom wrote and spoke from a disability studies perspective. These
people should get abreast of what has happned with Tom in the last several
years. For this set of historical events has little to do with freedom of
thought, or the pursuit of understanding, insight, rigor, etc. This set of
historical events has to do with an individual's opportunism, desire for
recognition, attention, and social status, and his already-established class
privilege. In university, and for some years afterward, it was o.k. to be a
marginal subject; it was cool. It seemed appropriate and transgressive to
make one's reputation and presence in the media rely upon the oppression of
disabled people and the medicalization of their lives. But when one's
upbringing has groomed one to occupy a certain social position, that novelty
will likely wear off eventually. Besides, disabled people can be, so, well,
poor and uneducated, lacking in the proper table manners and other social
graces. Not the sort of folks that one could take to the Ascot gavotte.
So, what does one do if: (1) he wants to take his "rightful" place among the
elite (which in the last century, especially, has increasingly come to
consist primarily of members of the medical-scientific establishment), but
(2) has a degree in Sociology (as opposed to cell biology or orthopedic
surgery), and (3) is no Emile Durkheim or Talcott Parsons? What did Tom do?
Well, upon learning that bioethicists and eugenicists were intending to set
up an institutional home in his backyard, and recognizing that he has some
class privilege by virtue of the outdated class structure of his country,
combined with the mileage he gets from his surname, Tom decided that he
would offer himself up as the mouthpiece for members of the establishment,
clearing a path for their acceptance. He would make their job easier
(protests and public outcry can really get in the way of securing large
research endowments) by presenting himself to the public as a rational and
level-headed disabled person, one who had some credibility with the disabled
people's movement. And pave the way for their acceptance he has: first, by
trying to persuade the disabled community to accept prenatal testing and
selective abortion, next, by rationalizing cures, remedial medicine, and
stem cell research, and perhaps in the near future, recommending euthanasia.
Tom Shakespeare is no more an ally of disabled people than is Peter Singer,
John Harris, Jeff McMahan, or Dan Brock. He doesn't have the intellectual
or academic influence of these monsters. But he is just as dangerous as
them.
Best regards,
Shelley Tremain
______________________
Professor Shelley Tremain
Department of Philosophy
University of Toronto at Mississauga
Erindale College
3359 Mississauga Road N.
Mississauga, Ontario, Canada
L5L 1C6
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----- Original Message -----
From: "Ron Amundson" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, November 06, 2004 4:33 PM
Subject: More about the Cure
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
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