Paul Corby is a 23-year-old man who was denied a place on the heart transplant list by Penn Medicine, which is part of the University of Pennsylvania. His doctors sent a letter to his mother Karen that included autism as one of the reasons:
“I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior.”
Karen created a petition at Change.org, which now has over 250,000 signatures (please go here and add your own, if you haven't already.)
I've linked to Joslyn Gray's superb reporting on Paul's story a couple of times on the thAutcast Facebook page. Today she runs an update on Paul that includes statements from several self-advocates on the autism spectrum, including Meg Evans of the Autistic Self Advocacy Network and John Elder Robison.
One is from me:
"I have not written about this, because I don't really have an opinion. All I have are feelings. I feel-- like people see autistic individuals as expendable," said Landon Bryce, who writes the award-winning blog thAutcast. "I feel so devalued by this that it is hard to put words together. How can I function in a world where being like me means being less worthy of life? How do I take the fact that people-- doctors, professionals-- feel this way about us, and tuck it away, and go on with my life, as if I were a real person who mattered? I guess I'm not. I guess we aren't. I wish everyone could feel for a few seconds what it is like to be seen as less than human in so stark and cruel a way. I wish no one had a reason to feel this way for more than a few seconds, ever again."