A story over at The Boston Globe highlights the results of a study in Massachusetts that found doctors in the Bay State are disinclined to see adult patients with developmental disabilities.
This is not surprising given the lack of consistent training around our nation for young physicians in the twin areas of disability and the social implications of patient care. Here at the University of Iowa where I hold a dual teaching appointment as a professor of creative writing and in the Carver Family Center for Macular Degeneration I have the privilege of attending weekly ophthalmology rounds and I have the excellent opportunity to talk with young physicians about the crucial importance of embracing disability. We talk about the fact that people who can’t be cured of their eye diseases are still important people who deserve great health care and informed support.
My fear is that an uninformed medical establishment will retreat in the face of treating people who are seriously developmentally disabled. I wrote at some length about “The Ashley Treatment” on this blog and said: “Say It Ain’t So”.
Briefly: “The Ashley Treatment” concerns the case of a profoundly developmentally disabled child whose parents arranged for the girl to be surgically rendered forever small by removing her uterus and breast buds and having her treated with considerable doses of hormones.
This controversial “treatment” raised considerable alarm both within and outside the disability rights community for indeed its quite easy to argue that this procedure was a kind of experiment rather than a matter of accepted medical practice. I know of plenty of medical ethicists who see the matter as being unethical.
Now the ugly matter is resurfacing. You can read about a group that’s apparently looking for ways to justify the treatment over at the blog of William Peace.
My fear is that when we have physicians who are wholly disinclined to treat adult developmentally disabled people that we will in turn see a stampede toward miniaturizing people. Why not? As the article above at the Boston Globe suggests pediatricians are often treating developmentally disabled adults because the larger community won’t have them.
Since when do we surgically alter human beings to make them more convenient for others?
What troubles me even more is the possibility that some disability advocates are signing on to a broader acceptance of the Ashley Treatment. I can only speculate about this matter at the present time but I think its safe to say that the developmentally disabled are at the bottom of the caste system. Disabled people with Ph.D.s can be just as abstract and dismissive as any other group. Mistaken thinking has no monopoly.
S.K.
Planet of the Blind 
You said it! Isn’t it interesting that the Peter Singer crowd can’t conceive of anything other than “easy” life? It’s as f they think Jefferson said “the pursuit of convenience”.
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It’s not something I could do to a child (or an adult). While I’d deeply regret the inability to care for my child myself and initially had some empathy about this, “the Ashley treatment” is just not the solution. It’s just unquestionably brutal. The parents are citing people like Peter Singer as authorities.
I can’t see why the insurance companies would pay for $30,000 in surgeries that aren’t medically necessary when they won’t pay for other procedures for people that *are* medically necessary, for home health care, for therapies for people with developmental disabilities, etc. This says a lot about larger social values.
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