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Sunday, Nov 8, 2009
If this was a little boy, does any here HONESTLY believe the parents or doctors would have sanctioned literal or chemical castration? "Oh it's so inconvenient that he has erections when we take him out in public!" No way. I don't think the family is trying to do anything but save themselves some trouble, on the other hand it just highlights the continued skew of gender and sexuality.
I'm not judging the parents, in the sense of sitting here saying "how dare they" or "they're creepy" or anything like that. I don't know enough about their situation or about the debate that took place among the doctors at the hospital.
However, I have read three articles about this, and my reaction every time is to feel freaked out by the story. I think the reason for this is that this procedure seems to have been done for the convenience of the care-givers. Maybe convenience is the wrong word, because it trivializes the difficulty of what her parents are undertaking in caring for her. I'm not saying it was wrong to do it, because she's lucky to have loving parents who are committed to taking care of her as long as they are able, and it sounds like what they've done will enable them to continue caring for her a lot longer...but there is still something unsettling about making major alterations to another person's body to make care-giving easier.
Also, about the "pillow angel" thing, what is unsettling about that is not the term, so much, as the language that surrounds it. They seem to like that she "stays where they put her" and they want her to continue to "delight" in being carried around. Maybe that strikes a nerve because it's natural for parents of normal children to feel like their kids are growing up too fast, and perhaps wish in a tiny corner of their mind that their sweet little babies could stay that way, just a little bit longer. Isn't that the tragedy in all of this, though? That's she's never going to pick up her head, roll over, crawl, and finally walk? That she's never going to cease to "delight" in being carried around by her parents, as normal children inevitably do? I'm not judging them for any of this, either...I'm sure they went through and continue to go through considerable grief that their daughter will never do those things, and perhaps their positive language is just a way to put a positive spin on a tragic set of circumstances, after years of having coped with it and having processed the fact that she'll never do those things.
As outsiders, we haven't had the time to process all of this the way they have, which is why it seems shocking to many of us.
Again, I'm not trying to judge, just trying to explain some of the shock many people seem to feel.
Anyone who writes about the rights of the child and says that it is tought to look after a disabled child but that's life should keep their mouth shut unless a) they have a disabled child, or b) work 10 or more hours a week volunteering to help look after a disabled child and makes a significant monetary contribution to the family.
I have a great deal of difficulty with the decision that was made by the parents, but as a father of a child with Cerebral Palsy I am not about to stand on high and make great moral pronouncements about their decision.
Ashley, sadly, has been reduced to a pet. This is no less than clipping a dog's ears or tail or the wings of a pet bird. It's tragic, to be sure, and I pity the parents--but they are nuts. The idea of mutilating the disabled so they can be more easily cared for by amateurs is a terrible idea. Certainly, this course of action precludes any treatment or future discovery that could moderate and improve her condition. This may become a trend in boutique parenting. "I want a child, but not the burden of his or her development. After all, they may end up wrecking my car or being hard to roll over and wash. Could I just have me a 'pillow angel?' I saw this cute outfit I want to dress them in. It's adorable."
I can imagine the same sort of decision being made for a male child in the same condition, although I'll bet my brass buttons there'd be even more controversy over it. However, in his case you wouldn't be worrying about some ghastly pregnancy/rape situation. Still, the decision would probably have been the same. A grown man would likely be even more difficult to diaper than a grown woman.
As for the term of endearment, I have heard far ickier and more inappropriate handles than "pillow angel." Lay off these parents. They are the ones who will be caring for her. Unless we accept responsibility to spend time with them, helping out, none of us has the "right" to prevent what will make this care possible and endurable.
If there is an argument here that has no merit whatsoever, it's that this girl's parents are trying to save themselves the trouble. They are caring for their daughter in a way that not many parents will EVER have to even consider doing for their children, and they're committed to doing it as long as they can, FOR HER BENEFIT. I don't agree with their choices, I wouldn't do it for my own severely physically disabled child, but my kid doesn't have the same issues and I have no idea what this family is facing. But dammit, they are most certainly NOT trying to save themselves some trouble.
WE ALL have failed this family. Our system of health care has made it so that it is damn near impossible to pay for full-time home health aides, if indeed one can find them. And aren't we almost all one accident way from bankruptcy, one illness away from destitution?
What does this say about us? What does it say about America that a family chooses to stunt their child's growth by surgery so they can do it their own damn selves rather than try to navigate the impossible labyrinth of muddled services, rather than try to weed out the worst of paid, "screened" caregivers (at the possible expense of their daughter being abused)? What does it say about us that this family considered this treatment to be better than trusting in our compassion, our solidarity, and our determinedness to make life better for people in need?
If you've never been in a situation of being utterly dependent on someone else, if you've never cared for someone who is completely dependent on YOU for his life, then please, don't judge. Vote. Get involved. Change this ridiculous system. Help a caregiver you know. 1 in 5 Americans call themselves disabled, so you shouldn't have too hard a time finding someone.
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