. . . And you're tired too

But really, this article out of the Beach Center for Disability at Kansas University is the best discussion of the issues the Ashley X case represents that I have seen anywhere. Some quotes:

We do not presume to judge the parents or physicians in this particular case. As a case study, however, the case raises complicated issues for us (the Turnbulls are parents of a man with disabilities, and all of us are researchers).

Why must an unusual medical intervention be even considered for the family who wants to keep their child at home? It shouldn’t, at least not until all efforts to provide support to the family, in its home, have been exhausted. Good policy begins with family support.

And:

Two standards guided the physicians in this case.

One was that this case and subsequent ones should be decided on a case-by-case basis. Due process prefers presumptions, not unguided case-by-case decision-making. At law, a presumption (innocent until proven guilty) pushes decision makers toward a pre-established, socially desirable result. Usually, the presumption can be overcome by sufficient proof (guilty beyond a reasonable doubt).

Case-by-case decision making, without any presumption against surgery, much less such an unusual one as growth attenuation, gives free rein to the physicians and institutional review boards. History teaches that unchecked professional freedom leads to over-use of procedures whose long-term efficacy is unknown or is demonstrably injurious.

The second standard was the usual one of medical risk-benefit. Here, questions arise. What are the long-term benefits of growth attenuation surgery? Will the procedure definitely reduce the child’s weight? Will it produce no undesirable effects? Clearly, the surgery will not prevent the parents from aging or necessarily lead to better and longer-term in-home care.

And this:

One of history’s lessons is that evidence-based decision-making by those who purport to act in another’s best interest has been elusive. Another is that it is exceptionally difficult to stand in the shoes of a person who is a minor with a disability and predict what that person would want, especially where the person’s life has provided no warrant — no evidence — about what the person would want.

Further, disability is a condition that society creates by its failure to accommodate to people with impairments; impairments are the inherent conditions that affect a person’s functioning. Stigma — the negative connotation arising out of difference (such as impairments) — still drives decision-making.