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Going to Seattle for symposium on so-called “Ashley treatment”

Date: May 15, 2007

Anne from Institute for Intersex Children and the Law told me about the University of Washington symposium on the so-called “Ashley treatment” titled Ethical and Policy Implications of Limiting Growth in Children with Severe Disabilities this Wednesday, and I decided to attend it.

As some of you may already know, this case involves a six year old girl (now nine year old) with severe cognitive disabilities whose breast buds and uterus removed, and her future growth halted by hormone injection, so that her parents could continue to take care of her at home. The rationale goes that the parents would not be able to take care of her properly if the girl, who is said to have the mental capacity of normal three month old, and that she would suffer as the result of it.

Ever since the procedure was first publicized last October in a medical journal and reported in the news, disability rights activists, such as Feminist Response in Disability Activism, ADAPT, and Not Dead Yet have condemned the procedure, and called for a ban of similar treatment in the future. This past week, Washington Protection & Advocacy System issued an investigative report that found the hospital in violation of the state’s sterilization statutes.

I’ve been somewhat following the controversy (I blogged about the topic in my Japanese blog), but since yesterday (when I decided to attend the symposium) I’ve been reading lots of articles and opinions from disability activists, scholars, and others. Of all critiques I’ve read, Mary Johnson’s “Ashley’s Treatment in the Media” in Women in Media & News is especially insightful, and perhaps one of the few that actually addressed the gendered aspect of the discourse, along with the disability part.

On the other hand, Alice Dreger (as always) offers a very nuanced analysis in “Ashley and the Dangerous Myth of the Selfless Parent,” which points out how our inability to admit to selfishness in parenthood obfuscates the reality, making it harder to prevent egregious abuses of children’s rights. Exactly: once parents stop feeling guilty about being selfish sometimes, they can express their own needs as such, rather than what their children need. And then, we as the society can step in to provide meet that need for the parents, leaving the children unaffected.

There’s a lot of anger toward parents among disability activists, both to our own parents as well as to groups that represent the interests of the parents of disabled people and yet call themselves to be for the disabled (e.g. National Alliance for the Mentally Ill). These groups not only promote laws allowing forced medication, forced institutionalization, end-of-life decisions made by family members, etc. that diminish disabled people’s right to self-determination, but also claim that they are doing it for their disabled family members. It would be much more helpful, as Dreger suggests, if these groups became more forthright and admitted that they speak for the parents, not the disabled people themselves. Too many people don’t seem to understand that parents’ and disabled people’s interests are not the same. Sigh…

Anyway, I’m going to Seattle…

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