Ashley's Parents Speak
Okay: Now I am getting a touch of the willies about this situation. Here is the Web site of Ashley's parents. (HT:Bernhardt Varenius)
Ashley's breasts buds were removed to prevent future discomfort. Her appendix was removed as a prophylactic against appendicitis. The parents have ignited the discussion as a way of urging other parents of similarly disabled children to consider having them also undergo surgery and hormone therapies to become "pillow angels."
One of the reasons for the surgery was to prevent boredom. But Ashley could have been given plenty of attention if she were not kept diminutive.
Obviously, all we know about this case is what the parents tell us. And they seem to be on a mission. Fine. But before "Ashley's Treatment," as the parents call it--which consists of serious surgeries and hormone therapies--comes to be seen as an appropriate method of "caring" for the profoundly disabled, it would seem to me that we need a lot more information about her case, her family situation, and the potential consequences of such "therapies." Also, what benefits and burdens might attend to disabled children like Ashley if they are allowed to develop normally?
I would also be interested in what the disability rights folk think about this situation.
posted by Wesley J. Smith @ 4:46 PM
12 Comments
12 Comments:
Okay, all of this stuff about a "body suited to her mental age" is just wrong, wrong, wrong. Totally wrong-headed. I cannot express how wrong-headed it is. (Am I ranting? Okay, sorry.)
What this essentially means is that it is "icky" for people to have grown-up bodies and baby minds. They very nearly state this repeatedly on the site. I just went and read it. In essence, this is a disgust reaction to the phenomenon of mental retardation itself. They want her to be little, snuggly, and more physically "baby-like" to "fit" with her baby-like mind.
Now, that's just one of the sad and jarring things about severe mental disability--that the body grows but the mind does not. No one, least of all me, tries to say that such disabilities are not a tragedy. This attempt positively to _tout_ (the site sounds like a sales pitch) the "Ashley treatment" (what a cute name!) is an attempt to evade the tragedy of the situation itself by making her body seem psychologically to fit her mental state.
I'm not accusing them of trying to make their own lives convenient. I actually do understand concerns about her getting so heavy that it's extremely difficult to carry her around and all the rest, and I understand that that is a concern about her. I've already stated that I don't think that justifies the measures taken.
But this stuff about a body "suited to her mind" has gotta go. Very creepy.
I would also agree with Gregory's implication that cutting off breasts because, well, gee, big breasts can get sort of uncomfortable, is just plain nuts. Breasts are a natural part of the female body. Like it or not, Ashley has a female body. To hear these people talk, you'd think her breasts were going to get so huge that they would be causing her immense pain or something. Balderdash. They can't even know now how big her breasts would have gotten, and a minor reduction in the case of severe _over_-development would of course have been possible. But what they are really saying is that just having ordinary-sized female breasts (which they describe prejudicially as "large") is too uncomfortable to be bothered with. And hear the unstated idea: "She's never going to _use_ her breasts. She'll never have a normal, sexual, maternal life. So why bother having them?" So basically, making the body unnaturally a-sexed is being considered treatment in the name of removing the relatively minor discomforts that can attend having a normal, female body, and this *obviously* because the child's female nature is considered disposable, since she cannot grow up and have children, etc.
This, also, is to my mind a very bad precedent and confused thinking.
Yes, Dvorsky doesn't mince any words, does he? This could be done to any severely retarded person,or, as the case Wesley's just posted shows, even to someone not retarded but with just a physical disability. My suspicion is that the complete package of preventing maturity will be pushed hardest for the severely retarded, though. If it's "gross" for people to have grown-up bodies with infantile minds, the new thinking will be, let's just stop them from growing up. Perhaps we should call it the Peter Pan approach.
This is a difficult case; I'm not at all sure how I feel about the ethics of the situation. It's hard not to feel some sympathy for the parents even if you don't approve of their method for coping with a difficult situation.
But I can't help but note that Leon Kass, who seems to be the presiding philosopher around here, bases his thought around what he calls the wisdom of repugnance. Apparently we are supposed to use our feelings of disgust to guide our ethical decisions. If you subscribe to this, how can you criticize other people for acting on their feelings of disgust, even if they are triggered by different situations than your own?
I haven't read Dvorsky. (He is the guy who wants to "upload" animals into computers to end their suffering, too.) But what you described is precisely what I find so disturbing about transhumanism. It isn't the prospect that it will really happen; which I think is more a fantasy. It is the eugenic value system.
I'm reminded here of a joke-story, usually told to characterize the economics of envy:
A Russian peasant is green with envy because his neighbor, Ivan, has a goat and he doesn't. An angel comes to the peasant and asks him what's wrong. He complains about the unfairness of the situation. The angel offers to give him a goat, too. The peasant says, "No, I want Ivan's goat to die!"
The application to this case is this: There is in cases of severe retardation a mismatch between body and mind. It is perverse to think that the mismatch is the major problem and that we can help the situation by maiming the body to make it match the mind, so that everything is "equal." That's just compounding the harm.
I have been in touch with elements of the disability rights community. They are very concerned. More when I know more.
This case is pure hell.
Every time I start screaming that they're violating her right to develop naturally, the other half of my brain takes over and starts beating me with very real difficulties.
The girl can't move! She's not going to be a physical danger to anyone... but her only caretakers will be her family, and they need to be able to care for her properly. Christopher Reeve (may he rest in peace) died from bed sores that got infected. Bed sores! They're not entrusting this girl to a facility because they love her and they don't want to risk her in a bad place, and have you seen what Reader's Digest said about nursing homes lately?
But does that justify mutilating her body? What about the removal of her breasts? She has a right to be in an intact body... but my best friend has a history of large mammaries in her family, and by the time she was 14 she was in a G cup, even though she was not overweight. She's in an I cup now and has to have her bras specially made for her. What's this kid's family like? Is there a history of cancer, both of the uterus and the breasts, or of either? They talk about her comfort, but "comfort" is a very vague word. If her parents died and she had to rely on her sibs, who might not share her parents' devotion to her, might Ashley not end up having problems if she develops breast cancer along the way? Who's to say that she might not get it and one of her sibs decides, "y'know, she has such a low quality of life, I think it would be better to dehydrate her to death than to spend all my money on having her cancern removed. Besides, chemo and radiation would cause her a lot of discomfort."
I'm not saying her sibs would do that, but it's a distinct possibility. They're living in a home where so much attention is focused on this girl that jealousies can arise.
Who's to say that, though some of the thinking behind their actions is warped, in the long run this might not be better at preserving her life? Disabled babies deserve every single chance to grow up to be happy and healthy adults, but what if this really IS the only way to ensure she has the chance to have a long and happy life?
Finally, her folks obviously love her. None of this stuff could have been covered by their insurance company(ies) to the extent that they went. This has to be coming out of their pockets and that can't be cheap.
Wesley, I don't blame you at all for not hopping on this one right away - is this really wrong? Is it really right?
But now they are proselytizing for "Ashley's Treatment" to become more common. Thus it has become more about the unique facts of this case. And I think it presents a real problem, because it could be used for "control" and "fetishizing" disabled kids, or "infantilizing" them.
Gregory: I am beginning to think that the waters run deeper and swifter here than they first appear. But that is pure speculation. Still, it would make sense for the parents to like transhumanist thought since transhumanists believe our children are ours to mold to suit our desires and fulfill our wants and needs. If parents--I am not saying Ashley's parents--want a permanent infant that never grows up, I don't see why transhumanists would oppose it. Based on personhood theory, if a non person is never allowed to reach the capacity of personhood, and indeed, is kept a perpetual non person, what would be the harm?
I think this never was about anything highly specific to this case. The considerations raised here could apply anywhere. As I've said time and again, if it were a matter of breasts getting way too big, they could have waited and seen and then done a conservative reduction. But that was never the point. They are explicit. It was to prevent puberty, to keep her from growing to her full size, and to keep her from developing normal female functioning.
"What if she got breast cancer?" Well, you could say that about absolutely any disabled person. Should we give them all mastectomies on the off chance? We can't justify this on grounds that could apply so widely, and that's just what they're doing.
Go read the (lengthy) debate by the folks over at Alas. I am bloody terrified that there are people who are *rationalising* this debate and telling us it is completely acceptable to carry out butchery on children who do not have a voice.
Some of these people scare the hell out of me. Tell me that this isnt the voice of America.
http://www.amptoons.com/blog/archives/2007/01/04/the-ashley-treatment-a-feminist-and-disability-rights-issue/
Sorry, that is the link. It is a fairly lengthy argument, for the potentially bored (or morally inflamed)...
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