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.
Timothy Shriver, Ph.D. 1 of 7"It saddens me to hear of yet another person with different abilities is being denied a treatment that is a matter of life and death," said Dr. Shriver in an email to me. "I'm not a lawyer so I don't know if denying Paul Corby a transplant is a violation of his civil rights. And I'm not a medical doctor so I don't know if denying Paul Corby a transplant is a violation of the hippocratic oath. But I am a parent and citizen and a friend of people with intellectual differences and I do know one thing: their lives are just as important as anyone's. Fortunately, this week we also received good news in our fight for medical justice according to New Jersey Today, on August 21, the State Senate in New Jersey passed a bill prohibiting discrimination of people with developmental disabilities with regard to receiving medical treatment in hospitals. We urge more lawmakers to join Special Olympics in a dignity revolution and take a similar stand against discrimination."
Dr. Shriver holds a doctorate in education. As the Chairman and CEO of Special Olympics, he serves more than 3 million Special Olympics athletes in 180 countries.
(Photo Credit: Special Olympics)
Kerry Magro 2 of 7"I'm scared," said Kerry Magro in a heartfelt video blog post about Paul Corby, noting that he and Mr. Corby are about the same age, and share the diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).
"I couldn't have imagined that one day, a doctor could say to me, 'we're not going to give you a transplant, because you're autistic.' I mean, what? Temple Grandin says it best: 'we are different, but not less.'
"I'm honestly scared of what is going to happen to our community, if we don't start building toward acceptance for individuals such as Paul. There's a lot of animosity. It's scary. What is going to happen to our future? What is going to happen to Paul?"
Autism self-advocate Kerry Magro was diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) at age 4. He is now a graduate student at Seton Hall University, a motivational speaker, and the author of the blog My Autism, My Voice.
(Photo Credit: My Autism, My Voice)
Meg Evans 3 of 7"The Autistic Self Advocacy Network, the leading national advocacy organization run by and for adults on the autism spectrum, strongly urges that patients not be denied organ transplants because of autism or other disabilities that do not significantly impact a transplant's likelihood of success," said Meg Evans in an email to me. "Medical treatment should never be denied on the basis of discriminatory assumptions that some people's lives are less valuable than others. We urge transplant facilities and regulatory boards to adopt strong policies to end such unethical practices."
Ms. Evans is an attorney licensed in the state of Ohio, the mother of two grown children, and the Board Secretary and Treasurer of the Autistic Self Advocacy Network (ASAN).
(Photo Credit: ASAN)
John Elder Robison 4 of 7"With many needy and deserving patients and a limited supply of hearts," wrote John Elder Robison in an email to me, "the selection of transplant recipients is surely very difficult if considered on a case by case or tribunal basis. That is why we use a first come first served or lottery system in most cases. That avoids many of the ethical complications by making receipt of a transplant a matter of luck as applied equally to all people.
"The only widely accepted ethical reason to deny a transplant is the presence of some other medical complication that would render the procedure unsuccessful, or medical issues that would predict the patient is near death from other causes so that a transplant would be wasted. Autism is clearly not an exclusionary factor based on that standard.
"I refer you to a recent research paper that states there is no generally recognized ethical or medical reason to consider mental retardation or intellectual disability as a reason for denying transplant, and discusses outcomes when transplants are done."
Mr. Robison is referring to this 2012 study, which reviewed long-term data and found, "There is no ethical or medical reason for guidelines to consider mental retardation, in and of itself, a contraindication to heart transplantation."
Mr. Robison is the author of Be Different and Look Me In The Eye.
(Photo Credit: JohnRobison.com)
Jennifer Cook O’Toole 5 of 7"My eldest daughter, who like her two younger brothers, my husband and myself, has Asperger Syndrome, is also a 'Make-A-Wish' kid," said Jennifer Cook O'Toole in a poignant email to me. "In her case, unlike Paul's, however, her medical issues were obvious before--and in fact even precluded the diagnosis of--her Aspergers. Was she treated better by hospital staff because of her advanced vocabulary? Or her 'precocious' nature? Both of these are hallmarks of Aspergers, as were her inpatient meltdowns, depression and night terrors. But neither aptitude nor challenge made her a more or less worthy patient.
"Mood disorders are, by the way, not separate 'and also' problems to add to Paul's list of challenges. Anxiety, ADD, OCD, depression -- they are all, to varying degrees, parts of being on the autistic spectrum. Yet Hans Asperger famously said that 'In order be a genius of any kind, you have to be a little bit autistic.'
"May we all check our egos and our tempers, may we all stop preaching and be better listeners, may we be a little more humble and, in this situation and all others, may we be a lot more humane."
Ms. O'Toole is the author of Asperkids: An Insider's Guide to Loving, Understanding, and Teaching Children with Asperger's Syndrome , and The Asperkid's (Secret) Rule Book: A Handbook of Not-So-Obvious Social Guidelines for Tweens/Teens with Asperger Syndrome, due out in October.
(Photo Credit: Asperkids.com)
Landon Bryce 6 of 7"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."
Mr. Bryce, who has an Autism Spectrum Disorder, holds a Master of Science degree. After working as a classroom teacher for 20 years, he now devotes his time to writing, and tutoring students with autism.
(Photo Credit: thAutcast)
Liane Holliday Willey, Ed.D. 7 of 7"It is a fundamental truth that autism should not be cause to deny human decency," Dr. Willey wrote in an email to me.
Dr. Willey, who has Asperger Syndrome, is a university professor, a consultant to Behavioral Resources and Institute for Neuropsychological Services, the Senior Editor of Autism Spectrum Quarterly and the webhost of aspie.com, a site dedicated to the understanding and support of Asperger syndrome. She also writes a blog for Psychology Today under the title The Pragmatic Aspie.
(Photo Credit: Aspie.com)
(Image Credit: Corby family photograph)
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