Friday, January 12, 2007

Ashley X and designer disabilities

Wow, here's a case where the parents have actually designed some "disabilities"! The parents claim the "Ashley treatment" will enable their daughter to participate more adequately in their family life and society. What would the defenders of the Ashley treatment think of hypothetical Deaf parents who deafened a hearing child in order to remove the distraction of sound and make it easier for the child to fit into Deaf culture? I know of no such instance--the example is completely hypothetical--but I have a feeling that there would be no hospital board of ethics that would approve.

Then there is the other side of things. How do we know that Ashley doesn't approve of her treatment? There are people who remove perfectly good bits of themselves, like legs and penises, just because they feel uncomfortable having them. Are Ashley's parents right? Would she have been uncomfortable with breasts and a uterus to such an extent that she would have wanted them removed? Just because Ashley has a pre-existing disability doesn't mean that she might not want to design her body a different way. And what if a precocious, articulate Ashley had been able to somehow request it? Again, I have a feeling that no hospital board of ethics would approve. Heck, I know of people who have had dysfunctional uteruses who went from doctor to doctor for years before getting the bleeding, painful, prolapsed disaster taken out as they wished. Maybe they should have had their parents make the request.

(For some background on "designer disabilities," follow the link from this post.)

I decided I should add a bit, just in case anyone is confused about my opinion. In the current social environment of the United States, the right of people with disabilities to control their own bodies and to make decisions regarding their children is met with horror and distaste. Yet, as we see with the Ashley treatment, the ability of able-bodied parents/caretakers to make radical medical decisions based on conjecture over future events rather than the actual needs of the person in their care is hailed as necessary and a kindness. This attitude trickles down to the littlest thing. I was at the hospital this week with my own grown daughter, who needed to return a monitor for a reading. When she fell due to a combination of seizure and EDS, nurses asked me what I wanted to do. Hell, don't ask me. Ask her. It was a short seizure. She was conscious. She's an adult. I don't own her.

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