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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