"A fundamental and universal 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. Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges. The “Ashley Treatment” goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and provide Ashley with lifelong benefits.
"Unlike what most people thought, the decision to pursue the “Ashley Treatment” was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.
"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. Typically, when awake, babies are in the same room as other family members, the sights and sounds of family life engaging the baby’s attention, entertaining the baby. Likewise, Ashley has all of a baby’s needs, including being entertained and engaged, and she calms at the sounds of family voices. Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body."
(Truly, go read the blog--if nothing else it's very touching, and it explains their reasoning much better than I could in a snippet.)
In reading the comments attached to the blog post, many were supportive, but some were not. Really, really not. I guess I'm having trouble understanding that.
Don't get me wrong--I see where the moral quagmire is here. Performing such life-altering surgery on someone who can't consent is nothing to sniff at in and of itself (although parents make those choices for their children every day). Not to mention the eugenics argument, and the slippery-slope issues--i.e. today they're doing this to a child with the capacity of an infant, tomorrow it will be a 5-year-old, and pretty soon if you don't have an average or better IQ you'll be deemed not fit to reproduce.
Really though, not to minimize or be flippant, but the parts they removed were only going to cause the child difficulties. And at her mental capacity, she wouldn't understand the ethical arguments, but only that the people around her weren't hugging her as much. Further, I think it's a load of tosh to even suggest that parents who would work so hard to take care of such a severely handicapped child at home would do much of anything strictly for their convenience. If they wanted convenience they could have abandoned her or gotten someone else to take care of her years ago; the fact that they've cared for her for so long (as well as the beautiful pictures on their blog) speaks volumes about their commitment to her well-being.
Basically, it seems that the parents made what appears to be a well-informed, well-researched decision about what would be in the best-interests of their family, and maybe the rest of us should butt-out.
But a larger question is still keeping me up thinking, prompted by a comment that I read suggesting that "God made her that way and it's wrong for her parents to try to change her". Notwithstanding the obvious flaws with that argument (i.e. then why did God also give us all this medical technology?), and twisting it into more Darwinian terms, there's a kernel of truth there. How far do we go medically? To make a life more comfortable? To save a life? At what point do we accept that "survival of the fittest" isn't just a catchy saying?
My problem? If we're talking about thousands of unnamed, theoretical people it's pretty easy to write them off. But if we're talking about someone I love--or even a cute little girl named Ashley with beautiful eyes that make me wonder if she doesn't have some secret wisdom--it gets much harder to be so callous.