The airwaves were full of reports at the end of 2011 about the decision of the North Carolina Eugenics Board to award $50,000 to each person who had been sterilized by the state against her will or without her consent. Eugenics was popular in the beginning of the 20th Century, and although it fell out of fashion after being adopted by Adolf Hitler, it was originally the darling cause of progressives such as Shaw, Keynes and Margaret Sanger of Planned Parenthood fame.
Eugenics is based on bad science, an oversimplified and reductionist reading of how genetics actually works. Maybe more important, since not everyone sits still for the minutia of theoretical scientific debate, are the values that support eugenics. Central is the belief that the human species can and should be perfected, that there is agreement on what perfection is, that some traits and characteristics are better than others, and that desirable traits can be bred into us and undesired traits can be eliminated though selective breeding. Racial improvement - you can see why Hitler was psyched.
Last year I wrote a couple of posts about ableism and the Not Dead Yet movement. Just when I thought my outrage meter was driven seriously into the red, I read a report by a mom about her mentally retarded daughter, Amelia, being denied a kidney transplant (with an organ donated by a willing relative) specifically because of her mental state. The denial was issued point-blank by a specialist doctor who made it clear he knows the girl will die without the transplant. And this barbaric decision was made not in 1933 at the height of the eugenics movement, not in Nazi Germany - but at Children’s Hospital of Philadelphia - last week.
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| Children's Hospital of Philadelphia Motto: HOPE LIVES HERE |
There are a number of places we could go with this discussion - the need for better public buy-in and ownership of the organ donation field, the inappropriate training and supervision of some medical doctors, the lack of adequate resources for people with obscure diseases, the rights of minorities including those with differently wired or impaired brains, and how decisions are made and by whom in our screwy health care system.
I just want to focus on one thing here - the values that permit a little girl to be condemned to die because of a pseudo-scientific opinion about her presence among others of our species. Medical science works every day to keep me alive, I respect it. Like many powerful belief systems, it can also be a force for great harm. We simply cannot permit any portions of our society to decide for all of us that certain human characteristics are unacceptable and worthy of exclusion from life. This is why a candidate like Rick Santorum is not a joke, this is why I brought up the Handmaid’s Tale last November. I draw a straight line from those who assume the right to force their beliefs on our minds and uteruses and how we use our sexual organs and with whom, right to this dangerous doctor in Philly.
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| Amelia, Denied a Transplant |
In every way possible, I hope all of us can push back against the people who work hard to force their medieval theories on all of us, who want to literally reshape the human race in their own image. It's why I hope we overcome disappointment with our dithering Administration and make sure of a resounding defeat for those who intend to revise our society and even our biology according to their fears, whims and prejudice.
Here are Amelia's mom’s own words about what happened:
Here are a couple of descriptions of the incident:
Here’s the “Philosophy of Care” of Children’s Hospital ofPhiladelphia :
