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My brother in law (weight over 200 lbs) is a quad. My sister, who is not a big woman, cares for him at home without help and always has. One of my close friends has a severely disabled son with cerebral palsy. He's 16 now, man-sized, and completely unable to lift himself or attend to his needs. She manages, because she has to. I'm not buying that Ashley's two parents would no longer have been able to care for her at home if she had been allowed to mature into a 125 lb woman. Also, they have no shortage of outside help; in fact Ashley attends school every day, with "activities customized for her," whatever the hell that's supposed to mean when talking about someone with the development level of a 3 month old.
I'm just going to give a few quotes from the parents' blog that bothered me.
The decision to move forward with the “Ashley Treatment” was not a difficult one for us as many seem to think.
Holy shit. Massive body modification of your daughter was not a difficult decision? Why NOT? Shouldn't major surgery for any child be something you have to think seriously about? The lack of humility in this statement disturbs me.
The “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels”
Here's the "pillow angels" bit, in all its glory. Note that the parents are promoting this treatment for other children. Note also that "pillow angel" is NOT their private nickname for Ashley; it's a category, not a nickname. All children like Ashley are "pillow angels." I don't care what nickname they give their own child; "Here you go, little pillow angel," is not what I would say to my own kid in this situation, but she's not my kid. Deciding that other disabled children with severe motility problems are now classified as "pillow angels" is icky.
Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
This is the clincher, for me. Who says that a body the parents have altered is "more appropriate" than the body she would develop naturally? Who says a nine and a half year old with the brain of a 3 month old is more dignified than a mature woman with the body of a 3 month old? That must mean, by extension, that a mature woman with the body of a 3 month old is LESS dignified. And I say, cordially, screw that. There's no lack of dignity in being disabled. Those who view Ashley may feel embarrassed by or for her; Ashley herself cannot - and need not - feel embarrassed.
In some ways this is a non-issue. Ashley's life at its potential best and Ashley's life at its possible worst are not very far apart - she is incapable of recognizing her parents, so it matters little whether she is cared for at home. She is spared possible pain she is not capable of understanding (menstrual cramps, bedsores) and suffers other pain she is not capable of understanding (nausea and illness from high doses of hormones, surgery pain).
In other ways it's a very important issue. This slippery slope is a real slope, with lots of people at the top of the hill looking down.
