Discrimination takes many different forms. We know too well what racial and ethnic discrimination looks like. Examples of discrimination can also be found within genders, ages groups, sexual preferences, economic and social classes, and religious groups. Generally these are unpleasant, offensive an unjust. Occasionally they can be life threatening, in which case they tend to be widely denounced.
I recently came across an article in the Philadelphia Inquirer dated August 14, 2012. Upon reading it I simply could not remain silent. The article can be found by following the link below.
Medical debate: Should autism block a man from getting a heart transplant?
To summarize the article, it reports of a twenty-three year old man from Pottsville, PA, who is in need of a heart transplant in order to live. The man is in rather good physical condition, aside from his heart. He doesn't smoke nor does he drink alcohol. Neither is he obese. Nevertheless, the University Of Pennsylvania Hospital in Philadelphia has refused to place this man on the waiting list for a heart transplant. The reason given for this denial is because the man in question has autism.
Specifically, this young man named Paul Corby received a letter from the Hopsital that said he would not be placed on the waiting list for a heart transplant because "given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effects of steroids on behavior."
Paul Corby is a talented man. He has written a novel, Isaac the Runner and is currently working on a sequel. He is diagnosed with Pervasive Development Disorder - Not Otherwise Specified, or PDD-NOS for short, a higher functioning form of autism. It is an intellectual and behavioral disorder but not a physical impairment. This is an important point because a spokesperson for the Hospital has stated that 38 % of patients evaluated for a heart transplant in the last two years were denied. In nearly every case the denial was based on other medical conditions that would severely affect their chances for survival or their quality of life after the transplant. This is not the case for Corby.
When I read this article I was moved on several accounts. First and foremost, it is wrong. I fully understand that not everyone needing a heart transplant will receive one. I further realize that cases a judged by their severity. I suppose I can even give in to acknowledge that the likelihood of survival needs to be considered. But Autism? What is the connection here?
If we are saying that the person who has autism is not going to have as long a life expectancy as another candidate, well, that is false. Autism is not a fatal disorder. If we are saying that a person with autism cannot experience a high quality of life, that is ignorant. Admittedly, their life will be very different than one who does not have autism. Still, quality is very subjective and can mean different things to different people.
This whole thing clearly borders on discrimination against the intellectually disabled. It may even be more than a borderline case. But without a doubt it is an injustice that ought to be reexamined, in my opinion.
I will admit I am moved by this on a personal level, as well. I have a 22 year old son who, like Paul Corby, is diagnosed with PDD-NOS. I also work with numerous people who share this diagnosis. I have a rather good grasp of what PDD-NOS is, and what it is not. While no two cases are identical, one thing is evident to me: a person with autism is equally precious, valuable and in most cases more loving - and thus possessing a higher quality of life - than many others not affected by autism.
I urge you to read the article referenced above. I would further encourage you to sign the online petition established by Paul's mother, Karen Corby. It can be found at the following link. (If the link does not direct you to the petition, try copying it and pasting it into your browser. You can also go directly to change.org and search for Paul Corby.)
http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant
Blessings,
G. D. Gehr
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