“Pillow Angel” — Parents of a severely cognitively and physically disabled girl have publicly defended their decision to retard her growth through the use of hormonal therapy and surgery, saying they were acting out of love and compassion.
     These two people have a nine-year-old daughter who is “severely mentally impaired”. She has “static encephalopathy”, which is, as far as I can Google, brain damage which will not change, IE, will not get better or worse. The term seems to be most often applied to cerebral palsy, although I haven’t read anything that says this little girl, Ashley, has cerebral palsy, so I’m left to assume she suffers some other kind of brain damage.
     Ashley has the cognitive abilities of a three-month-old baby, and that’s never going to change or improve. The parents have elected to take care of her themselves, with the help of two grandparents, I believe. The controversy comes in the form of what the parents have dubbed “Ashley treatment”, wherein they’ve used surgeries and hormonal treatments to retard Ashley’s physical growth. Ashley has also undergone some other surgeries, such as a hysterectomy, removal of her breast buds, and an appendectomy.
     Ashley can’t move or speak, so the parents have elected to retard her growth so that she’s easier to move and care for. I also read that this might help prevent bed sores — less weight and pressure helping to prevent that, I guess. Since she can’t speak, and the surgeons were in there anyways while doing the hysterectomy, they also yanked out Ashley’s appendix, to prevent appendicitis. The breast buds were removed to prevent familial breast cancers.
     The parents are facing a lot of criticism over these treatments. Critics claim that the child was “mutilated” simply to make caring for her easier, and the parents claim that these treatments will improve Ashley’s quality of life. Since she’s smaller and more easily cared for, she can be taken places more easily and so forth.
     Personally, I think the treatments are a bit extreme. I’d think that if the parents can afford all that surgery, they could probably afford to hire a big male nurse to move Ashley around later in life, or something like that. I don’t really object to the treatments because, quite frankly, the kid is a big potato. Seriously. I hate to rip away the romantics people are shrouding this kid in, but when you get right down to it, the little girl can’t think or speak or move, responds to basic stimuli, and feels basic emotions. To be absolutely brutal about it, she’s a flesh sac, and the honest truth is that your pet dog has more cognitive and emotional abilities than Ashley does. So it’s not like Ashley is capable of giving a damn about the situation, and frankly, we do a lot worse things to our pets than the parents have done to Ashley. Read up on what de-clawing actually is, and I just about guarantee you’ll never have a cat de-clawed again. For that matter, we routinely have our male pets neutered and our female pets are given hysterectomies, and although there are some good medical and societal reasons for those things to be done, basically, we do them for our own convenience.
     The reason we get freaked out about these things is because Ashley happens to be human-shaped, and I’m sure we’re probably hardwired somewhere in our brains to object to this sort of behavior towards anything that looks like us. It would only make sense. When you get right down to it, though, Ashley, sadly, is on about the level of a house pet. She’s not a “viable” human being. She can’t ever care for herself, she can’t express herself, and in fact, doesn’t even have anything to express. Grimshaw and Jazz have more to say than Ashley’s ever going to have.
     People might get upset about this point of view, and I understand why, because we don’t consider talking about other humans in this manner to be “acceptable”. She’s a human being! She has rights! Well, yeah, she’s human-shaped, but, y’know, for whatever reason, it pretty much ends there. It’s an ugly and brutal truth. Ashley’s lucky, because she has loving care-givers, and has not, like many others in her situation have been, institutionalized. She gets to spend the rest of her life with her parents, who will love her and care for her, and whom have taken steps to make sure they can keep doing so, and to make sure she’s comfortable.
     The problem with this situation is that many people, myself included, can sense the “slippery slope” looming ahead. It’s an ethics consideration. Who are we to judge what impaired human should be teated in this manner? If we allow people to do this to their severely impaired child, than what’s to stop us from neutering Downs Syndrome kids? Or applying treatments like this to other impaired humans? At what point is it acceptable to do this to another human being, and who gets to decide that? People start thinking about haunting specters like eugenics when they see cases like this, and it makes us nervous. It makes us feel like it’s better to outlaw any such treatment at all, rather than face the idea that we might eventually be doing this to all impaired people, like if we allow this than we’ll eventually be doing surgeries to the mentally impaired regardless of the severity of their impairment.
     We don’t like having to think about things on a case-by-case basis. We like clear-cut lines. We like absolutes, extremes, and black-and-whites. No one likes the color gray. And Ashley resides quite firmly in a gray zone.

     ETA: Sunday Herald: Special Reports

     ETA: Ashley’s Parents’ Blog.

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This entry was posted on Saturday, January 6th, 2007 at 2:41 pm and is filed under Controversies, Medicine. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.