Tom
Can you explain the statement below. This I think is the paradox in the
community. One that is quite central to the( mis) communication.
"I agree with the opposition to medicalisation - ie medical domination of
disabled people's lives - but I find it difficult to accept that this
should mean rejection of medical research or attempts to find a cure for
conditions which can often be painful, difficult and life limiting."
For me, as someone who lives in a province where your present views are
that of the majority by both disabled and non-disabled, it seems like a
step to the past. but maybe I'm not really understanding your point.
What is confusing to me, is that from where I sit/stand; medical research
and cure are not something's we disabled persons control. Thus once
available you as I won't have a choice
to say I'm OK as I am. Any attempt to say so will be seen as reason for
denial of services and other resources that allow us to be OK nowadays.
Maria
----- Original Message -----
From: "Tom Shakespeare" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Thursday, November 04, 2004 11:48 AM
Subject: Re: The Economics of Metaphysics
> Although a member of this list, I don't follow debates, but I've been
> disturbed at some of the reactions to my column on Ouch, which have been
> forwarded to me. I hope that folk who've been discussing the column have
a
> chance to read it, and the interesting and varied reactions to it from
> other disabled people:
> http://www.bbc.co.uk/ouch/news/btn/tshakespeare_reeve.shtml
>
> I believe in debate, and I think it's important to rethink taken for
> granted assumptions, and discuss honestly and openly the issues involved.
> That's what I was trying to do in this and other columns. They are short
> journalistic pieces, not closely argued academic papers, and I am sure
they
> are unbalanced, inadequate, insufficiently contextualised, and of course,
I
> make as many mistakes as anyone else. But I stand by the gist of what I
> have said in this and other pieces. Bob says my tone in the pieces comes
> across as patronising. Well, honestly, that wasn't my intention and I
> sincerely regret it. I was trying to be accessible and free of jargon.
> Feedback welcome!
>
> I was responding to the tradition in the British disability movement of
> opposing attempts at cure, therapy, medical research etc. Oliver on
spinal
> injury research, Finkelstein on conductive education, many other examples
> past and present, particularly many disability activist responses to
> Reeve's death.
>
> I agree with the opposition to medicalisation - ie medical domination of
> disabled people's lives - but I find it difficult to accept that this
> should mean rejection of medical research or attempts to find a cure for
> conditions which can often be painful, difficult and life limiting. I am
> not relativist about impairment. I don't take a medical tragedy view, but
I
> do think that many impairments cause major problems, and are negative, not
> neutral. Respect for people with impairments, definitely. But that
> doesn't mean thinking impairment is okay. We are not our impairments. As
> I've also written on Ouch, I think that the analogy between disability and
> gender/race/sexuality can be misleading. Disability may be more like
> poverty: not an identity to be celebrated.
>
> Some medical interventions don't work. Some are positively harmful.
> Placing the whole emphasis on medicine would be a big mistake. Neglecting
> the campaign to remove social barriers would be very wrong. Thinking that
> medicine will soon provide cures for conditions would be foolish. But
even
> accepting all this, I think that preventing impairment, reducing
impairment
> and even curing impairment, where possible and provided in an equitable
> way, would be a good thing.
>
> Of course different people have different attitudes to their impairment.
> That's fine. Some deafened adults want cochlear implants, some don't.
> That's okay. But the fact is, that many people with impairment would like
> to reduce or halt their physical/mental decline, and that's fine by me.
To
> take one example, Agnes Fletcher's 1999 survey of disabled
> people/supporters of disabled people on genetics found that a large
> majority supported efforts to find gene therapy solutions to things like
> cystic fibrosis or muscular dystrophy. So the disability community as a
> whole don't seem to be opposed to the principle of cure. Particularly
> those with degenerative conditions.
>
> I met a Ugandan woman recently, who had faced disability activists in her
> country who told her that anti-polio immunisation was wrong because there
> was nothing wrong with impairment, from a social model perspective. I
told
> her that they were dangerously wrong, in my view.
>
> Let me give me a few examples to clarify my position:
>
> I think giving pregnant women folic acid to minimise risk of spina bifida
> is good.
>
> I think that improving obstetric care to reduce the prevalence of cerebral
> palsy would be great.
>
> I think better drugs, free of nasty side effects, for schizophrenia or
> depression would be good news.
>
> If stem cell therapy worked for parkinson's or diabetes or dementia or
> heart disease or liver disease - all of which seems quite possible at the
> current stage (although it will take ten years to complete clinical
trials)
> it would be a huge step foward. Spinal chord regeneration seems less
> likely, but worth working towards.
>
> And so forth and so on.
>
> In my own case, I have no desire to be average height. Happy the way I
am.
> But I would like to find a way of preventing spinal degeneration. I would
> rather avoid becoming a wheelchair user if possible, just as I imagine
> polio survivors would rather avoid post-polio syndrome, if possible, and
> SCI survivors would rather avoid UTI and pressure sores. And I don't
think
> that my desire to avoid being a wheelchair user is disrespectful to other
> wheelchair users.
>
> I don't think it's controversial to say that most of us support many forms
> of medical intervention to mitigate or minimise symptoms. Is it?
>
> Of course there were all sorts of problems with Reeve. I mentioned some
of
> them in my piece. But thinking of him as a traitor or whatever seems
> misguided to me.
>
> Cure isn't wrong. Some forms of cure, some cultural respresentations of
> cure, the priority given to cure - they may be wrong. We need a more
> nuanced view of cure, and I'd be delighted to be given references to any
> disability studies authors who have provided one, because I haven't found
> it yet.
>
> I'm sorry that some people on the list feel it's appropriate to respond to
> my views by denouncing me personally or questioning my own identity,
values
> or motivations. I'd like to point out that I am largely happy, well
> adjusted, not self-hating, not disability-hating, committed to disability
> equality etc etc. 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. I usually write things because I read or hear things which
I
> think are illogical or wrong or dangerous. I try to think honestly, and
> listen to other people, and try to work things out as best as I can. I
> make mistakes, no doubt. If I wanted an easy life, believe me, I'd shut
up
> and not write about disability any more. Challenging the mainstream view
> has caused me nothing but stress, abuse and isolation, and hasn't improved
> my life one bit!
>
> Onwards and upwards.
>
> Tom
>
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