When your child is diagnosed with autism, you work tirelessly to secure your child every therapy, benefit and support you can find. Your child works hard and progress is made. Some kids progress more than others. Imagine that your child advances so much that they develop speech and social skills. You get to the point at which you feel like you have won the battle... you made the right moves and your child took the ball and ran with it. Now ask yourself what you would do if you were basically told that the very thing you fought tooth and nail, sacrificed financially for to make certain your child reached his full potential and put in countless hours of one-on-one time pulling your child out of his/her solitude was the reason your child was being denied a life-saving heart transplant.
This is the very situation that the family of Paul Corby is confronting.
If you haven't read the story first told by Joslyn Grey of stark.raving.mad.mommy and Babble.com, Paul Corby is a 23-year-old with a rare, congenital disorder of the heart called left ventricular noncompaction, which has left his heart weak and able to pump blood through his body at about 20 percent efficiency. He is an author. He has never abused drugs or alcohol. Oh... he also happens to have PDD-NOS, an autism spectrum disorder. According to the Babble post, he was recently denied the opportunity to be placed on an organ transplant waiting list for a number of generic issues... but one very specific reason: autism.
As I reflected upon the story of Paul Corby, a quote that I remembered reading in college when studying WWII came to mind:
"First they came for the Socialists, and I did not speak out --
Because I was not a Socialist.
Then they came for the Trade Unionists, and I did not speak out --
Because I was not a Trade Unionist.
Then they came for the Jews, and I did not speak out --
Because I was not a Jew.
Then they came for me -- and there was no one left to speak for me."
-- Martin Niemöller
Assuming that autism is indeed the main disqualifying factor in Paul not being placed on the waiting list, it could happen to any of our kids. The system has in essence told the Corby family that Paul's life has less value because he has the audacity to have ASD and in doing so has said the same thing about my daughter. They have told people on the spectrum that their life is worth less because of their condition. They have been told that they matter less.
It should not make a difference at all, but let us not forget that Paul is high-functioning. So what does that mean for my daughter? I have no clue where she is on the spectrum. She isn't "high-functioning," and she isn't "low-functioning" -- she is "Bianca-functioning." She appears to have way fewer communication skills than Paul, so is the value of her life less than that of Paul Corby's? I have seen kids way more affected than my daughter. I have worked with kids that are way more affected than Bianca. I love kids that are way more affected than Bianca. Are their lives less valuable? Hell no. Especially not to those that love them.
Could a doctor in good conscience really look me in the eye and tell me that because a boy has no speech, stims constantly and has no apparent awareness of his surroundings that his life means less than another? What about my childhood friend that has Down's syndrome and has had lifelong heart issues? I remember his mother telling my mom that he was not projected to live past his 20s. He is in his 50s now and LOVED by his family. What would these doctors have told Carly Fleischmann before she discovered her vocal outlet had she needed a transplant?
I don't envy the doctors that have to make these decisions. It certainly cannot be easy. I am sure they are not looking forward to going into a room and in very clinical terms sentence somebody to death. There is no joy in that, and I can only imagine they got into the medical field to save lives, not condemn them. There are a limited amount of organs available and priorities need to be made. But let's make them based on legitimate medical issues and not intellectual impairment, especially since there have been studies showing that cognitive impairment plays no factor in the success of an organ transplant.
Intellectual disability should play no role in somebody's qualifications for an organ transplant. It is just another way the system is discriminating against people on the spectrum or with special needs, and we need to put an end to it immediately.
Please sign this petition supporting Karen Corby's fight to save her son's life: "Help My Autistic Son Get a Life-Saving Heart Transplant." Act now to protect the rights of others, or there will be nobody left to protect your own.
For more on autism, click here.