Wednesday, June 18, 2014

Sandra Jensen / Annie Golden Heart

It's been a great week and exhausting week here at SITD 2014 Dallas.  I got to relax tonight by skyping with my wife and two daughters.  My daughter with Down Syndrome turns 12 this week.  She held up to the screen/camera the ornate extensive artwork conveying to me what she wants for a present.  I think she wants a cat... or dog... or is that a spider?  I'll move mountains to get my daughter what she needs!  (Which is why I don't resonate with some interpretations of the parents of the man healed of visual impairment in John 9).-- as long as it's not a cat, dog, or spider!

Dr. John Swinton @ SITD 2014
My wife asked me if I had seen any viral comments about the President forcing kids with Down Syndrome to die.  Honestly, I am just tired of political rhetoric distorting the true ethical issues and denying personhood to persons with disabilities and their family caregivers.

And no, I hadn't...

 Some of these untrue or half-true viral posts do more damage to the disability advocacy movement.  So to set the story straight, the National Down Syndrome Congress released a statement in its  e-newsletter late last night which I dug out of about 100 unopened emails. You can read the full text of their statement below.

This brings up some of the issues we are grappling with here at #SITD.  I am looking forward to hearing more conversations tomorrow, particularly with ethicists Stanley Hauerwas, Hans Reinders, and John Swinton.

(From emailed newsletter update 17 June 2014)

The Sandra Jensen Story
In 1996, Sandra Jensen, a 34 year old woman with Down syndrome, needed a heart-lung transplant to survive. As far as anyone knew, she would be the first patient with Down syndrome to receive an organ transplant, and initially she was denied. Along with her doctor and her family, Sandra had to fight for the right to receive a transplant. The case gained nationwide attention, arguing that Down syndrome should not be enough to automatically deny a patient a transplant. Sandra won. In January, 1996, she received the requested transplant at Stanford University Medical Center. Her case was seen as a test of whether hospitals could use blanket categories to deny treatment. Since the passage of the Americans with Disabilities Act and the establishment of related federal regulations, discrimination against people with disabilities in medical treatment is prohibited.

Today, there is an internet petition ( asking the President of the United States, "Why are children with Down syndrome not considered for organ transplants?" While we love grass roots advocacy, we want to set the record straight by saying it is not true that people with Down syndrome are automatically denied life saving treatment based on their diagnosis of Down syndrome today.

Making decisions around organ transplantation is a terribly complicated process, and the supply of organs for donation is quite limited. People are denied transplants for a variety of reasons. A patient who feels he is being denied solely on the basis of Down syndrome needs to appeal through the hospital system.

Make today the day you sign up to be an organ donor, and help more people receive the organs they desperately need.