Human Exceptionalism

Ashley’s Case: It is Getting Ugly

The never shy Steven Drake has blistered the doctors who performed the surgery on Ashley in an open letter. Here is what he wrote in full:

“I am writing to you wearing several hats.

My first hat is as a person with a disability related to injuries received at birth. The doctor who inflicted those injuries told my parents I probably wouldn’t live very long and that it would be better for all concerned if I died. Obviously, my parents didn’t take the road being offered and I’m here 51 years later.

“My second hat is that of a person who spent over ten years working in schools, group homes and day treatment centers supporting people with just about every conceivable combination of physical and cognitive disabilities you could imagine. Some of them had lousy lives and some had very good ones. The quality of their lives was unrelated to the severity of their disabilities. It always came down to the level of support, love and acceptance they experienced from those around them.

“My third hat is as a disability activist who has been dealing with the increasingly hostile policies emerging in medicine and bioethics over the past decade. Mostly I deal with issues such as infanticide, euthanasia and assisted suicide.

“But your actions and the sanctions given by your so-called ethics committee represent one of the most openly egregious attacks on the bodily rights of people with disabilities I have seen in my work as an activist. Where were your social workers? Are there no families with severely disabled adults finding the support they need? Did you bother to find out?

“Rather, I suspect this was an all-too-appealing chance to do a ‘cutting-edge’ procedure involving ‘cutting up a little girl. It brings us back to the times of the infamous Willowbrook Institution, where children were injected with hepatitis in the efforts to develop a vaccine, with the coerced consent of parents.

“As an activist, advocate and person with a disability, I promise to do all in my power to have your assaults on disabled children halted and to call for investigations into what passes for ‘ethics’ in your ethics committees.”

Very Sincerely,

Stephen Drake

Research Analyst

Not Dead Yet”

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