Thursday, January 11, 2007

Ashley the "pillow angel"

The big news item in Seattle lately has been Ashley. To quote the Seattle Times: "Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk... She is fed with a tube." So her parents have decided to stunt her physical growth and sexual development with medical procedures including having "her uterus and breast tissue removed... and [receiving] large doses of hormones to halt her growth" (International Herald Tribune). They say that keeping her around 4'5" / 75 lbs. for the rest of her life will allow them to more easily pick her up, carry her around, and generally care for her and involve her in family activities.

But as you can imagine, news of the procedure has sparked a lot of controversy. Every medical ethicist and their mother has had something to say on the issue. Personally, I find it intriguing, and I'm still not sure what my opinion is. I don't feel I have the authority or the experience to categorically say either "That's outrageous!" or "What a good decision!" I've never had children to care for, let alone a disabled child, so all I'd be judging from would be my gut reaction to the idea of cutting the bits out of a young girl. But it's always so much more complex when you're involved, isn't it.

The parents make a pretty compelling and rational case for it on their blog. "Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc." That totally makes sense to me. But they also say "A fundamental... misconception about the treatment is that it is intended to convenience the caregiver; rather, the central purpose is to improve Ashley's quality of life." But... isn't the latter objective achieved only through the former? If she grew to normal size—say 5'6", 125 lbs.—I'm sure they wouldn't just leave her locked in the attic and send up food three times a day. They'd still try to involve her w/ the family as much as possible. It would just be a lot harder for them. Like it or not, her quality of life is inherently determined by how high a quality of life her caregivers are able to provide for her. And if she were 125 lbs., it wouldn't be impossible for them to lift her or bring her along on trips... it would just be significantly more, well, inconvenient.

Which, of course, is part of why the case is so controversial. There's not a black-and-white case to say that it would be impossible to care for her without this treatment, or that she'd die. Yet (in my opinion) it's naïve to think that the parents are doing this lightly, without significant thought or medical and ethical consultation. I have no doubt that they're sincerely doing it because, first and foremost, they want to improve her quality of life. But they also achieve the (slight) simplification of their own lives in the process, thereby making it easy for everyone who doesn't have to care for Ashley themselves to jump in and criticize.

Not to sound too biblical, but judge not, lest ye be judged...

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