Thursday, March 13, 2008

pillow angels

i'm not sure how many of you have been following the ashley story (and, more specifically, the "ashley treatment")...CNN posted this article about it yesterday, which was the first i'd heard of it.

basically, this girl has an advanced form of cerebral palsy, which has rendered her unable to walk, speak, or take care of herself. doctors say she has the mental capacity of a 6-month-old baby.

the girl is ten years old, and her parents recently subjected her to what they call "the ashley treatment," which included a hysterectomy, removal of breast buds, and intense estrogen therapy to permanently stunt her growth. ashley is a little girl at 4 feet, 5 inches, and will now remain that way for the rest of her life, in spite of medical projections saying that she otherwise would have gained more than another foot of height. the saddest part is that the doctor who performed her operations committed suicide after doing so, although it's unclear as to why.

i found myself stunned by this story, but it also made me think. part of what got me was their promotion of the term "pillow angels" to describe severely disabled individuals who more or less can't leave bed. for some reason, this term bothers me; i feel like automatically labeling someone as an "angel" rather than a human with special needs is an odd sort of way to deal with it. in a way, it objectifies the individual through the roundabout way of trying to raise them ABOVE other humans; either way, the thing is no longer human. clearly, these parents have chosen to play god with this child, making life-altering decisions for her in a way that suggests they are above her; their use of the word "angel" to make it sound like she is above them isn't flying with me. it seems like a cheap shot to try to justify/compensate for their actions. moreover, what is the definition of "angel"? why is she now automatically an "angel" because she has developmental differences? it just seems like a strange, martyring use of language that doesn't grant ashley the humanity she deserves, yet arbitrarily pretends like she is greater than human at the same time. is it because she simply doesn't have the capacity for evil? i don't know. maybe.

sorry, i'm pretty scattered about this. i'm not really sure how to explain what i feel. i just know that it bothers me. obviously, beyond the language choices, there are some real ethical concerns with what they're doing, which i don't feel the need to get into here. however, i encourage you to go read her site, and read some of the other articles about what they've chosen to do.

what do you think? do we have the right to alter the lives of others for the sake of convenience (both theirs and ours; the parents didn't want to have to deal with her menstruation) when they can't say anything about it?

what if, within ashley's lifetime, a treatment for cerebral palsy is somehow discovered (never say never, people)? what then? what about when she "wakes up" at 35 and has a fully functioning psyche, yet permanently has the body of a little girl? scary to think about.

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