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I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

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Thursday, October 4, 2012

Transplant Discrimination

Trigger Warning: Denial of life-saving treatments to people with disabilities

 Over the last several months, I have seen too many incidents where someone was denied a transplant because of being autistic or having a cognitive impairment or because of some other disability. It's discrimination, pure and simple, and it kills people. Whenever it doesn't make the news and there is no outcry that leads the hospital to reconsider, the person who was denied the transplant (it's usually denial of placement on the transplant list, since there are always waiting lists for these things, though it is also sometimes refusal to perform the operation when a family member offers the organ specifically for this person, such as with kidneys,) the person denied the transplant has essentially been given a death sentence for having a disability.Up until 1995, a diagnosis of Mental Retardation actually was a dis-qualifier for transplants, and it seems that cognitive impairments remain an unofficial dis-qualifier.
These are the cases I know about:
  • Amelia Rivera, age 3 at the time, was denied a kidney transplant from a family member due to intellectual disability this past January. (The hospital reversed the decision after the story recieved national attention and a petition gained over 50,000 signatures.)
  • Paul Corby, age 23, was denied placement on the waiting list for a heart transplant, partly due to being autistic. The story became public in August. Also cited was the fact that he could not name all his medications, but considering the number that he is on and the fact that his mother can't name them all either, this is rather unfair. (Paul's current status is not known to me, though his petition is still active on and has over 250,000 signatures.)
  • Sandra Jensen, age 32 at the time, was denied placement for a heart-lung transplant due to cognitive impairments in 1995. She had Down's Syndrome. (The operation eventually happened, but her body rejected the transplanted organs.)
That's actually what I can find that's been talked about much publicly. I know that Robert, who is 14, has been denied a combined heart/kidney transplant because of his autism as well as a kidney transplant from a relative for the same reason. There is a page about what's going on with him on Facebook, and he seems to be doing OK on dialysis for now.
Robert and Paul and Amelia and Sandra are not alone. This happens a lot, and it needs to stop. There is now a coalition of 14 advocacy groups all pushing for this discrimination to stop. The Americans With Disabilities Act already makes this sort of discrimination illegal, so now we just need to get doctors to obey the relevant laws before any more lives are lost to this discrimination.

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