Last year I wrote about the personal reasons why I decided to become an organ donor. Today, I am reconsidering that decision.
Some months back I wrote an article about a little girl who was denied a kidney transplant because she was, quote "Mentally Retarded" (a word that modern medicine doesn't even use anymore, if that shows you how archaic the system that denied her is.) In fact, the internet was on fire with the story. Eventually and after much petitioning and the hospital enduring a firestorm of pubic opinion, she was approved to have the transplant with her mother donating. I was, at the time, appalled to learn that denying people on the basis of their cognitive abilities was not an aberration but routine.
I understand that there's a lot of prejudice in the word against those with special needs, and it's been part of my ongoing mission in life to fight it, to educate. But even now it comes as a gross surprise that this littleness of thought isn't reserved for the uneducated, ignorant masses. Nope, apparently it's deeply embedded like a cancer in our school system, in our government, in the doctors who have the power of deciding who is going to live and die. And they have decided
that children like
mine
are not worthy
to survive.
Here it is. A 23 year old man with high functioning Autism (PDD-NOS to be specific,) has been denied a heart transplant on the basis of his having Autism. And now any single one of us who have children with a special need can't do the all too human mental duck and cover. Because while the first story appalled and enraged me, and while I did my small part to help her case, I don't have a child with an Intellectual Disability. I have a child with high functioning Autism. It is the second story, the latest eye-opener of what has apparently been a prevalent prejudice, that prompts me to look at my radiant son - my funny, witty, intelligent, amazing little ball of sunshine - and realize with a nauseous horror that a bunch of cobweb-ridden relics in the medical field *would not consider him worth saving.*
I can't even get my head around that, much less my heart.
You have it all backwards. He is not less. He is MORE.
I have to admit that since Jaden's diagnosis we've gone in and we've gone in deep. My friends, my community, is the Autism community. The children I know are by majority special needs. My eyes see the world with a different lens. Typical children puzzle me. They are the ones who seem to be distant, aloof, anti-social. I'm sure they are just "normal", but after being surrounded by children who don't know a social game from a game of chess, it's very different. SN children don't play NT games, they don't develop malice, they don't scheme. They love different but they love big. At the age that NTs are learning to reserve and hide a piece of themselves for self-preservation, SNs have all the emotional openness of a one year old. So, we say they're different. But less??
Back to the story and the comments section, which is often educating if you like to be sickened by humanity. Many comments from parents who say that their kids were also denied transplants for the same reason. One that says they were lucky; her child had a heart transplant as an infant. She was later told if they had known his dx they wouldn't have.
One quote: "It's not a matter of placing lower value on his life. It's about honoring the donor."
That's when I remembered my former decision to become a donor. Had I considered what kind of person I might be saving with my decision? No, I never really thought about it beyond "someone who needs it." What if the donor was able to choose? Could we say we don't want someone of a certain race or religion, or sexual orientation to get our organs? Are we allowed that littleness of spirit? Maybe as a donor I'd much rather be saving the life of a person with special needs than a 70 year old man who drank himself into oblivion for 50 years. Maybe I'd like to say that I wouldn't want it to go to someone in prison, or convicted of certain felonies. Or can I specify no NTs?
No, I can't do that. They check to see if someone is a donor, then they check who's next on the list that matches.
I can say that if that list is designed to exclude MY OWN SON, they can go *(^&%^ $@^*&@$#.
And that is all.
"At first he was OK with it because he thought, 'At least I don't have to go through that surgery,' " his mother said, "and then he thought, 'Why not? Why don't they like me?'
"After Karen Corby said she was willing to give permission for Penn to discuss her son's case, health system spokeswoman Susan Phillips said that "the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."
--Should Autism block a man from getting a heart transplant?
Please sign Karen Corby's petition 'Help my Autistic son get a life-saving heart transplant"