I dont have al the details, partly because of memory gaps, but a member of
Self Advocates People First in California was turned down for a heart lung
transplant because of Down s Syndrome and an uproar came fromthe
disability rights movement because the people who decided had not even MET
the woman (who by the way is a wonderful advocate) anyway- their argument
was not life expectancy but her ability to follow the regime of follow up
necessary to keep the transplants without rejection ( how well could she
follow instructions) anyway, needless to say she is alive and well and
living with brand new heart and lung and another victory for disability
rights, im sure someone on the list fromCalifornia can give you the name
and case citation but it was the media that made it work- it portrayed her
and her friends as competent, contributing citizens, not as helpless,
hopeless disabled useless eaters. Its a big deal and we WON, I hope
this will help your case in some way although I dont know the child
involved. Tanis
pls send attachments to [log in to unmask] not to this email thanks.
On Mon, 26 Jul 1999, Michael Peckitt wrote:
> For your attention:-
>
> 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.
>
> >From the Daily Telegraph
>
> "Leeds General Infirmary told them [the family] that their daughter would
> not be considered for heart surgery because of her disability"
>
> "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.
>
> The Down Syndrome Association stated:-
>
> "A lot of medical professionals think peole with Down's syndrome aren't
> worth putting the effort in for,.....Their argument is that people with Down
> syndrome don't have the same quallity of life, but they are not informed
> enough to make that decision."
>
> Mencap also responded claiming it"confirms discrimination".
>
> 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?
>
> Thank you for your time
>
>
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