On Sat, 6 Nov 2004 14:33:53 -1000, Ron Amundson <[log in to unmask]> wrote:
>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.
On a particular topic, I try to say the same thing to all the different
audiences I talk to, Ron. Maybe that's a mistake. But I want to be
consistent, and get at the truth, and find a position which I think is
sustainable and which I can defend. There are some topics which I might
only talk about to friends or colleagues, and others which I would talk
about in the media.
If people misinterpret me, I would hope to challenge them, and go on
challenging them. It's a risk you have to take. But the answer is not to
say something which you don't believe - which I've heard some disability
people do, people whom I respect very highly.
It's this double standard which causes such problems: people endorse a
strict social model approach in public, then acknowledge in private that of
course impairment is a problem. I don't think you can have it both ways.
Rather than having pro-research or anti-research, we need to have nuanced
and careful arguments about research. The current disability rights
position on medicine isn't convincing to non-disabled people - because it
is so counter-intuitive - and the answer isn't to reject medicine more
loudly or consistently, but to develop a better position where non-disabled
people and professionals might begin to realise why it is that priorities
are wrong or particular interventions are misguided.
>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.
I don't recognise this view of medical professionals. Yes, they can be
patronising and arrogant. But most of the doctors I work with are rather
more nuanced and careful than this suggests. They don't promise cures,
they try to help mitigate and manage impairment. Many of them recognise
that the main problems for their disabled patients are social and economic,
not medical, and some of them actively advocate for better social/political
responses.
After all, read the piece by Colin Blakemore, head of the UK Medical
Research Council, on Reeve's death:
>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.
Disability studies doesn't often talk about medical research - which seems
unfortunate. But when it does, it is almost always negative. I read Mike
Oliver's inaugural lecture again over the weekend. He is both amusing and
vitriolic over medical research - talks about it as a milleniarian
movement, and says
“The problem is of course, that throughout the history of humankind, the
number of cures that have been found to these ‘chronic and crippling
diseases’ could be counted on the fingers of one hand and still leave some
over to eat your dinner with.”
This is just not true! Look at the treatments for PKU, for diabetes, for
infant leukaemia, for asthma, heart and lung transplants for CF, increased
life expectancy in MD, the elimination of smallpox and polio, the reduction
in diptheria and measles, the impact of anti retrovirals and so on. Cures
don't work in the sense of total eradication of disease, but many clinical
interventions have had a major impact in reducing mortality and morbidity.
It is very common to read rejections of 'genetics' in the disability
literature, or the equation of genetics with eugenics or nazism.
The impression often given by many UK activists and academics is that
medical research is unimportant to disabled people. I am sure Ron is
right - they don't actually reject all medicine in practice. But that's
what it looks like. I repeat my earlier challenge: show me a nuanced
evaluation of medical research in a UK disability studies publication.
They are few and far between.
My piece - which was on a website which is aimed at disabled people and
primarily read by disabled people, and which has been responded to
positively as well as negatively almost entirely by disabled people - was
intended to point out that medical research is important to many disabled
people, and that a blanket rejection of cure is misguided. I wanted to
challenge disabled activists who had rejected Reeve so vocally - including
some on this very list - and point out that other disabled people had
different views.
My hunch is that many disabled activists and academics and individuals are
intimidated from expressing their divergent views. That's partly why I
come out and say things. If we don't debate, things don't proceed.
I've really valued the feedback and argument that people have sent me off
list, and thank Ron for his challenge.
Ron's right, I wouldn't have written a pro-Reeve column in a national
newspaper. But if we can't discuss these issues on our own fora, where can
we?
Tom
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