Human Exceptionalism

Ashley’s Case: The Disability Rights Movement has Engaged

The disability rights movement is really up in arms about the non therapeutic surgeries imposed upon Ashley. Not Dead Yet has weighed in with its own press release (released on the 6th but only linkable now). Here are a few key points:

“‘We are saddened but not surprised by the fact that this was publicized and met with a great deal of public approval,’ said Diane Coleman, founder of Not Dead Yet. ‘The public is willing to sanction the murders of disabled children by their parents, so it’s hardly surprising they would rush to the support of parents and their medical partners in a matter like this.'” I actually think there isn’t a lot of public approval. Initially, many were reluctant to criticize–including Secondhand Smoke–due to the presumption that the parents were trying to do the right thing in a difficult situation. We needed time to think it through. But the more we have thought about it, and the more we have seen that there was no therapeutic value to the surgeries, the more, I think, people have been repulsed by what was done–as I noted in a post yesterday. But this much is right: When parents kill their disabled children or dehydrate them to death via pulling of feeding tubes, there is widespread support and sympathy–a tragic irony that I mentioned in my first post on the subject.

And this point is right on: “Not Dead Yet calls for a total ban on this procedure and similar ones, no matter what ethics committees think of them. Ethics committees are not a substitute for the constitutionally-guaranteed right of due process. In fact, they often act as an end-run around those protections. ‘Ethics Committees often say they strive for diversity in their membership, but they have historically excluded representation from the disability community about whom they are making life and death decisions,’ said Coleman.”

Knowing these fine people as I do, this isn’t over. The doctors and ethics committee members who approved Ashley’s surgeries are going to have a lot of ‘splainin’ to do.