I regularly enjoy reading the feminist posts and discussions at Pandagon, but the recent coverage there of the story of Ashley X and the medical procedures to alter her body for the convenience of her caregiving parents begs for further discussion away from what seems to be a rather strident point of view that beleaguered parents of disabled children really can do no wrong. You know, because it's their unimaginable burden and, luckily, not ours.
Amanda begins by stating:
To make it very clear, she will never improve. She’s never going to develop the capacity to make decisions or think or move much on her own.So, okay. This may be completely true. Or it may be partially true and she will show some minor improvement but never be able to make important decisions independently. Or, like quite a few underestimated disabled people chatting about this on the nets, the medical experts may have done what so very frequently happens to disabled people and discounted them far too early. This discounting and underestimating the medical community does before disabled people are then limited in their life options through the decisions of others is a key aspect of the institutional and societal discrimination disabled people face every day.
Is Ashley's situation one where the medical experts' pronouncements of her permanently childlike mental status is absolutely accurate? Wheelchair Dancer and Cory Silverberg argue persuasively that it doesn't matter and I'd warn that the slippery slope argument too often only really applies on the far side of the disability divide rather than within the widely divergent ranks of disabled people, whose abilities vary at least as widely as abilities among those considered nondisabled.
The disabled folks who are talking about this case are not worried about sliding into that crevice the Ashley Treatment opens the way for -- we have been in it, we've been included in discussions as the equivalent of Ashley, public policies and conventional wisdom dealing with the moral fuzziness of this case too often already puts us right there with Ashley. We too are seen as the "objects" of this problem, with the "subjects" duking it out over what constitutes appropriate care. The differences between our mental capacities and those of people like Ashley are used to separate us, invalidate all those times we are treated as if our disabled bodies complemented a disabled mind. We too are infantilized and patted on the head as parents and other experts on our conditions testify to our needs.
Amanda also says:
In terms of disability rights activism, the compelling case for it is the idea that having a disability doesn’t mean that your life isn’t worth living and therefore you should be accomodated and given as many opportunities as anyone else for the joys of life that other people who are considered more able-bodied have. With that in mind, I think it’s quite possible the parents of this girl are living up to that standard, if in a way that’s startlingly out of the norm. They’ve identified their daughter’s needs and pleasures—basically, those of an infant—and are looking for ways to fight social structures and even biology that would erode their daughter’s ability to have those things. It’s weird, but it makes sense. From that perspective, they are taking activism into a new dimension, seeking not a cure, but a radical rethinking of how far we’re willing to go to accomodate the disabled as they are. I might be wrong, but it’s worth considering it from that angle.What an ugly twisting of disability rights activism to use it to justify behavior "startlingly out of the norm." How is removing the child's breast buds to prevent future sexual abuse "fighting social structures" and public ambivalence to the fate of the thousands of disabled people sexually abused every year. Why is fighting normal biology acceptable for "abnormal" bodies or abnormal minds? How is being treated differently from nondisabled human beings part of the disability rights cause? How does "radically rethinking how far we are willing to go to accommodate the disabled as they are" relate to a case where a child's body undergoes radical surgery? Why does including disabled people among those you treat with basic human respect require radical rethinking at all?
There are lots of viable ways to approach this complex topic of the "Ashley Treatment," but justifying it as a form of disability rights activism is not one of them.
Update: Well, Sally said much of this, much better, in my own blog's comments here.