Paul Corby, a 23-year-old man from Pottsville, Pennsylvania, has become a veritable Internet star. After Mr. Corby was denied placement on the heart transplant list by Penn Medicine, part of the Hospital of the University of Pennsylvania, his mother Karen started a petition on change.org asking the medical facility to change its mind.
A letter from Penn Medicine, sent to Ms. Corby, gave a handful of reasons for the denial. The factors were the complexity of the procedure, his psychiatric issues, and the unknown effects that steroids might have on his behavior. Another reason listed in the letter, right there in black and white: autism.
In addition to having a rare congenital heart disease, Paul has an Autism Spectrum Disorder called Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS.
The autism community at large is horrified and disgusted that autism could have any bearing at all on the decision whether or not to give a person a life-saving medical treatment.
When Strollerderby published our original post on Paul Corby exactly two weeks ago, Karen’s petition had about 4,200 signatures. Last week, when I updated you about Paul’s story being picked up by the Philadelphia Inquirer, Philadelphia news networks, and ABC News national, the petition had jumped to 10,000.
Guess where it stands today?
People with autism, and the people who love them and work with them, aren’t the only ones who are outraged: today, the petition on change.org passed 250,000 signatures.
Although Penn Medicine has yet to make any comment other than, essentially, “no comment,” plenty of other people have something to say. Perhaps the most important opinions in this matter, besides those of Paul Corby himself, are the opinions of those who are themselves on the spectrum. So often when discussing issues that affect the autism community, we only hear from medical and psychiatric experts, and from parents (like myself). Mainstream news outlets do not feature the voices of adults on the spectrum nearly enough.
Below, six self-advocating adults who are themselves on the autism spectrum share their thoughts about Paul Corby’s story, and the ethics of using autism as a disqualifying factor in a transplant decision.
Another important advocate for those with cognitive disabilities also shared a statement: Tim Shriver, the CEO of Special Olympics. I had reached out to him because his blog post about Amelia Rivera, a little girl initially denied a kidney transplant, marked a real turning point in Amelia’s story. We learned recently that Amelia will, in fact, be able to proceed with a kidney transplant at Children’s Hospital of Philadelphia.
(Image Credit: Corby family photograph)
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