Human Exceptionalism

Ashley’s Case: Reason for Hope

I have spent the last few days doing a lot of media about Ashley, the disabled little girl subjected to invasive surgeries and hormone injections to keep her small and physically immature. I have been quite heartened that other than the occasional transhumanist, while accepting the parents’ benign motive, most people seem to recognize the intrinsic wrongness of much of what was done to her. This expresses, I believe, a deep and profound embrace of Ashley’s intrinsic human value–regardless of her capacities or characteristics. And this somewhat surprising development has come from the MSM, as in an on-line Time article, byline Nancy Gibbs, as well as the disability rights movement.

Here is part of what Gibbs wrote: “Ashley may be an extreme case; but she is a terrifying precedent. Critics note that for brain damaged children, development can come very, very slowly–so deciding when she’s only six to change a child’s body irreversibly can amount to a medical form of identity theft. Frequent touch is indeed important; but is it really so much harder to hug someone who is 5’6,” or bring her to the table at dinnertime? Turning people into permanent children denies them whatever subtle therapeutic benefit comes from being seen as adults.”

Meanwhile, this press release from the Disability Rights Education and Defense Fund, a Berkeley based non profit, makes the concern of the disabled community unequivocally clear: “[T]he conduct of Ashley’s physicians and the ethics committee’s decision in this tragic story should be widely questioned–there are future implications for other families and their children who have significant impairments. We rely on healthcare professionals to alleviate pain and suffering and maintain functionality, not decide when someone is worthy of holding human rights. After decades of struggle to enshrine the human rights of people with disabilities in law and policy and to challenge the overwhelming prejudice, negative attitudes, and misperceptions that are widely held about people with intellectual disabilities, this sad and puzzling episode must not mark a turning point for those hard-won gains.”

The more I think about this episode, the more I think there should be an independent investigation.