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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