This is disturbing. An article was published recently in The Journal of
Clinical Ethics (Wilkes et al., 1998, vol. 9, 2) that describes a study of
medical students in California, LA. 65% of the students when asked said they
would not consider providing someone with Down's syndrome with a heart
transplant. It is also ironic that many people with Down's syndrome live
shortened lives, but cardiac problems may be one of the main reasons for
this. Thus the reason for refusing to provide a heart transplant seems to
come down to refusing patients because they have heart problems!
p
> -----Original Message-----
> From: Phil Smith [SMTP:[log in to unmask]]
> Sent: Monday, July 26, 1999 1:34 PM
> To: [log in to unmask]
> Subject: Re: Down's Syndrome & Quallity of Life
>
> Michael Peckitt wrote, in part-
> >I have just read in the paper today that the family of 9 year old girl
> with
> >Down's Syndrome from Sheffiled, Britain will not be considered for a
> heart
> >transplant.
> In 1995, in California, Sandra Jensen was similarly denied a transplant,
> for similar reasons. It was only after long and arduous legal advocacy was
> she able to obtain a transplant. Her transplant was successful. She
> subsequently died, as I recall, as a result of an illness completely
> unrelated to the transplant.
>
> >>From the Daily Telegraph
> >"consultants believed that refering children with Down's syndrome could
> give
> >'false hope'" as people with Down's syndrome generally do not have a long
> >life expetancy and there are a shortage of heart.
> This is patently ridiculous. I can think of at least two people with Down
> syndrome who are in their 50's and are clearly not thinking about ending
> their lives any time soon, in spite of the mistreatment applied to them by
> an oppressive society which incarcerated them in institutions for most of
> their lives.
>
> >I have very mixed and troubed feelings about this coming from a medical
> >family (though I am not a doctor myself), and can thus see their point
> and
> >as a person with a disability. Any views?
> Yes, many. Chris Kliewer, in his book _Schooling children with Down
> syndrome: Toward an understanding of possibility_ (1998). New York:
> Teacher's College Press, outlines the continuing impact of eugenics on
> medical and other rehabilitation industry "services." (He has a wonderful
> article as well written with Stephen Drake: Kliewer, Christopher and
> Drake,
> Stephen (1998). Disability, eugenics and the current ideology of
> segregation: A modern moral tale. Disability & Society, 13, 95-111.)
> People with Down syndrome and other developmental disabilities continue to
> be mapped by oppressive modernist positivist Western society in cultural
> terrains at the margins of dominant society. People with Down syndrome are
> literally not on dominant social maps for reasons related to racism. Like
> other folks with developmental disabilities, they are abused and murdered
> at rates significantly higher than folks without disabilities (see
> Sobsey).
> Denial of medical attention considered appropriate for other members of
> society is clearly abusive. The fact that people with Down syndrome have
> had shortened life spans is a direct function of their mis-treatment;
> denial of medical care because they have a foreshortened life expectancy
> is
> "blaming the victim".
> The power accorded medical science in modernist society is huge. It is
> also
> a reflection of the racism and oppression endemic in our society. Paulo
> Freire points out that oppressed groups often internalize elements of
> their
> oppression. While recognizing the power of medicine as an oppressive force
> in our society, we continue to be troubled by situations such as this one,
> without questioning why it is that we are troubled.
>
> Down off my soap box.
> Best,
> Phil
>
>
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