OK. ENOUGH, ENOUGH, ENOUGH!!
If anyone wants to kick disabled people out there in the big wide world this
sort of backbiting is only adding grist to their mill. My oh my, how they
must be rubbing their hands with glee as we cheerfully rip lumps off one
another and take our eyes off the ball.
Dr. Peter Handley
School of Political, Social and International Studies,
University of East Anglia,
Norwich
UK NR4 7TJ
----- Original Message -----
From: Shelley Tremain <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, November 07, 2004 9:37 PM
Subject: Re: More about the Cure
> 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
>
> [log in to unmask]
> [log in to unmask]
> ----- 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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