Should Autism Be a Death Sentence?

Paul Corby is 23, autistic, and suffers from a potentially fatal heart condition called left ventricular noncompaction. He’s high-functioning enough to have written and self-published a novel for pre-teens, but he also has severe social problems, is prone to emotional outbursts, and suffers from various psychological and developmental issues. He spends much of his day playing video games and never goes anywhere without a stuffed Princess Peach doll. Although he needs 19 different medications (many of them for his heart condition), according to his mother he handles his own med management. His heart problems are serious enough to warrant a transplant. 

And the doctors at the Hospital of University of Pennsylvania think he should die. Welcome to the wonderful world of 21st century medicine!

No one denies that there is a shortage of organs for transplant. Rationing is a sad reality, and each year several hundred people die while waiting for organs. Please note, however, that those people died while waiting for a viable organ. Paul Corby has been told he’s not even fit to be on the waiting list. Because he’s autistic.

The hospital is making the case that the medications and recovery process could exacerbate his emotional and social problems. They consider his social disability significant enough to impact his potential for recovery. The steroids he would need to take after surgery could radically magnify his outbursts and negatively affect his ability cooperate in his own post-op rehabilitation. All of these are certainly factors worth considering, but are they enough to write off an entire human life? Or are we looking at another group of doctors weighing the “quality of life” and finding it lacking in Paul because of his developmental disabilities?

Even after Paul’s mother Karen gave permission for the hospital to discuss her son’s case, they declined. Spokesman Susan Phillips told the Philadelphia Inquirer 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.”

Don’t you just love that? She considers discussing the case “most unkind,” but telling someone he should go die is just okey-dokey.

Karen is trying to draw attention to his case and looking for another hospital who will add him to the transplant list. When the media and social media turn their gaze on a story like this, hospitals usually blink, so Paul’s chances for a transplant are probably improving.

That doesn’t change the underlying fact that the doctors at UPenn denied Paul a place on the transplant list because of his autism. You’d think Phillie-area hospitals would have learned by now that you can’t designate a portion of the population as lebensunwertes leben and expect people to just roll over and take it. We’re done with that. We have voices, and now we have the technology to make those voices heard.

Go, sign Karen’s petition. Share the link. Spread the word. Let’s get some sunlight on these dark corners, and let the medical world know that you can’t write people off because they don’t conform to an ideal. The world is turning, ever-so-gradually, against the disabled and “unfit.” Our cultural and political elites are dragging us into a new age of utilitarianism that demeans and degrades and devalues human life. Let them know you won’t stand for it. Where there is life, there is hope.

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About Thomas L. McDonald

Thomas L. McDonald writes about technology, theology, history, games, and shiny things. Details of his rather uneventful life as a professional writer and magazine editor can be found in the About tab.