blog.bioethics.net

I am surprised this is the first time I have heard of this story. I understand why the parent's elected to have this procedure for their daughter. They stated many good reasons for their decision. Not being in their situation I do not want to pass judgement on them and their decision. I don't know how I would react if I were in the same situation. However I agree that our society needs to develop a better way or better programs to help care for people with severe disablities.

- by R. Fultz on Feb 27, 2007 at 1:50 AM | link

The article is far from "definitive" - it gives pretty short shrift to the consistent and growing condemnation from disability activists *and* national advocacy organizations such as the Arc of the US, United Cerebral Palsy, and the American Association for Intellectual and Developmental Disabilities.
None of these are mentioned by Caplan by name, and all would have a lot to say on the unexplored questions regarding institutions, real options in community supports and the "ethics" of the procedures. Representatives of these organizations would have portrayed disability very differently than transhumanists James Hughes and George Dvorsky, who gave the impression in media coverage that they had some sort of "expertise" in developmental disabilities.
Since this *was* a situation in which the issues of disability were central, it is really appropriate to challenge the dominance of ethicists in the coverage and relative paucity of disability reps, except for those of us who engaged in some protests to force our way into the discourse.
For a comprehensive listing of articles, position papers, etc. from disability organizations, you can
check out the following website:
http://www.katrinadisability.info/ashley.html

- by Stephen Drake on Feb 27, 2007 at 4:52 PM | link

Most of the coverage of this event focuses on the parents, never on the child, and only occasionally on the doctors involved.
It is clear that they were into human experimentation rather than "first do no harm."
That a so-called "ethics committee" at a major university's hospital apparently had no dissenting voice in their deliberations on this case is damning of the entire field of "medical ethics."
Whatever else is said about this case, there is certainly little question that both the surgery and the hormone therapy were not designed to be beneficial to the patient - who is Ashley (for whom no one spoke), not her parents.
Love.

- by William Loughborough on Feb 27, 2007 at 8:18 PM | link

As a person with a life long disability, I am horrified by the "Ashley Treatment." It is shocking that there exists such sympathy for the parents from those who are nondisabled. The majority of disability activists are simply appalled by the Peter Pan Syndrome inflicted upon this innocent child to make life more convenient for her parents to care for her. Once when I was little, a physical therapist suggested to my mother that my arms be amputated since they didn't work anyway because of paralysis. My mother thought this was ludicrous. The same analogy holds true for Ashley except that her doctors were more than willing to chop off her budding breasts, remove her uterus, and oh yes, lets not forget the appendectomy for good measure! Ashley's physicians forgot their Hippocratic Oath to first do no harm. They unnecesarily caused this child great physical pain for no medical reason. The media focuses on many children who have been sexually molested but when a child with a disability is murdered by their own parents, it barely makes the news. And, many children with disabilities have been murdered. The same old hackneyed excuse is always used; lack of in-home services, etc. This butchering of children with disabilities has got to stop and nondisabled people must begin to listen and re-evaluate their priorties by learning from people with life long disabilities. What was done to Ashley was immoral and it has to stop!

- by Valerie Brew-Parrish on Feb 27, 2007 at 10:10 PM | link

Caplan's commentary was right on the money. But what it did not reflect was the reality of the news business. Speaking from the perspective of decades as an editor and a reporter at a major newspaper, I testify that what Caplan calls for is difficult to provide, probably more so in today's newspaper environment. The thorough reporting and knowledgeable writing that he recommends takes huge chunks of time. Most editors would be unwilling to free a reporter to answer all or even a significant number of Caplan's questions. Hundreds of other equally compelling events are out there. Time to move on, the reporter is told, maybe we can back to it later when there is a fresh development. But in most case that is just lip service.

- by David Jensen on Feb 27, 2007 at 10:41 PM | link

"I am startled that there is something being written/promoted on what the media did wrong in covering the Ashley X situation, and the sin of expert resource omission is still being committed. How can press/media write a fair and balanced article without consulting experts in the disability rights community, who are, after all, the best experts on people with disabilities. Art Caplan may have expertise in "ethics" issues, but he can not credibly speak "for" people with disabilities. Any story on Ashley is grossly incomplete without the voice of people like Ashley, people with disabilities who are, after all, the group who are being physically mutilated, and subjected to experimental drug treatments. The problem has never been with Ashley....the problem continues to be an unaccommodating society in the richest country in the world. A society that will continue to get away with cutting up little girls (remind anyone of genital mutilation?) and subjecting them to dangerous hormone injections until the press/media look beneath the sensationalism and capture the real story!"

- by Marsha Katz on Feb 28, 2007 at 4:14 PM | link