Archive for ‘ashley treatment’

July 4, 2010

Ashley treatment, writ large

I have been incredibly busy lately, and so quite late in checking blogs, email, festering sores that need attention…. OK, I did manage to work in the attention to festering sores. But I have had a deficit of web time. Yesterday, I was finally able to work through my RSS feed. Huzzah! And good thing I looked instead of just marking all as read, as I was tempted to do after three weeks of neglecting it. For there in Pharyngula, was a post about some perversely diabolical doctors essentially recommending taking poison to prevent the calamity of lesbian daughters. He is shocked and horrified, calling it “a convenient anti-uppitiness pill for women” and supplied a link to Alice Degner’s criticism of the experiments at Bioethics Forum. A commenter also gives a link to Degner’s commentary on the matter at Psychology Today.

While both of Degner’s articles are worth reading in full, I call your attention to this sentence from her Psychology Today piece: A democratic medical establishment does not alter people’s bodies to fit regressive social norms; it advocates for patients by demanding the social body get its act together.

This, this, this. This is why the attacks on people with severe disability, the failure to respect basic bodily integrity and human rights, are not an attack on just people with disabilities. It’s convenient and self-assuring to assume that what happened to Ashley X, the maiming of her body for her parents’ convenience, is something that only happens to a special class of people for whom it somehow a “good.” But it shouldn’t be so hard for people to understand that there are a whole lot of groups of people who aren’t convenient. As David said “Ashley is me. I am Ashley. And you are Ashley, too.” (Sorry, I lost the link to David’s blog post and now only have this CNN article.) And now a medical “cure” to fix the main problem of being inconvenient!

This is much in keeping with the historic “destroy the Indian in order to save him” tactic of late nineteenth century US humanitarians (and, I understand, the practice of forced deculturization also has been done by Australians against native peoples there). “Of course,” they say with a patronizing tone, “nobody actually hates the _________ (disabled, blacks, Indians, women, gays, etc.). This is for their own good. Because we care!” And, yes, I suppose it is a better approach than Phillip Sheridan’s “nits make lice” genocidal one. But, my dears, it is the same damnable attitude. If the “other” is acceptable only when made convenient, the “other” isn’t acceptable at all. And what of those who can not be made convenient under any circumstance? Then there is Sheridan’s approach, which the patronizing will let happen while they wring their hands over how sad it all is.

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.)
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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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