The webcast of the symposium on growth attenuation, held at the Seattle Children’s Hospital in January 2009, is up on the website of the Treuman Katz Centre for Pediatric Bioethics at the hospital; Emigrl has previously posted thoughtfully and in detail on this symposium both at What Sorts here and in more detail at her Eminism blog. There are two parts to the webcast, which you can link to below, but a couple of brief things about my viewing of them first.
In the first, there are short talks from five speakers–Benjamin Wilfond, Sarah Goering, Douglas Diekema, Denise Dudzinski, and Paul Steven Miller. These were the organizers of the 20-member Seattle Growth Attenuation and Ethics Working Group, which coincidentally included several members of the What Sorts Network, including Adrienne Asch and Eva Feder Kittay. Diekema was one of the two doctors who published the original report of the growth attenuation treatment of Ashley.
I have to say that I found these talks as a whole to be more than a bit chilling: they are clinical and academic in orientation about general issues in the background of what was, after all, an overall treatment that appears to have violated the hospital’s own policies, state law, and the Convention on the Rights of the Child. (True, as Wilfond says at the outset, the organizers decided to focus on growth attenuation, rather than on the breast bud removal and hysterectomy performed on Ashley … I guess the latter two procedures don’t attenuate a child’s growth …) For example, discussions of the omission / commission distinction in the context of actively attenuating growth to 4 feet vs passively or inadvertently allowing someone grow to just 4 feet; questions of the whether there’s a danger that the “Ashley treatment” would creep beyond the target population of the “profoundly disabled”; and the role of parental consent in authorizing growth attenuation. The parallel in the history of eugenics in Alberta would be to a symposium–say, in 1931– on “ethics issues around sterilization” that focused on issues like the pros and cons active sterilization vs passive segregation, whether sterilization might creep beyond the target population of the feeble-minded, and the role of parental consent in authorizing sterilization. But maybe that’s just me.
What’s also striking is that the panel conveys the impression that the previously untested “treatment” is a done deal, and it’s all really a question of how it’s best to be implemented more widely. Scary, scary, scary, mostly because they are no doubt RIGHT.
Unfortunately, the video is poorly shot (since they decided primarily to shoot a large screen that you can’t read anyway, and so you can’t really see the speakers, at least after the introductory comments), and it is also streamed, which limits how you can view it, but you can view it here.
The second part contains the discussion between the speaker panel and the audience. One of the revelations, at least for me, was hearing Diekema’s account of how growth attenuation came about as a treatment, where he both traces it to the treatment of tall girls with estrogen dosing in the 50s and 60s, and points to cases that pre-date that of Ashley that involved children with disabilities that were “done quietly”, and that there are “dozens of institutions” that have offered growth attenuation in similiar cases. (Emigrl had mentioned these in her initial report, but I must have blocked that out.)
This is much better filmed, easier on the eyes, and I think more interesting. All the questions are good, and the answers revelatory. There are parent / grandparent questions in the second half that are especially valuable. What struck me most about those parents who were sympathetic to growth attenuation treatments was that they see the medical interventions as a kind of godsend solution to their problems: of changing, moving, travelling and interacting with larger-sized children, or adults, with profound disabilities, especially with buildings and facilities ill-suited for fuller social lives. So far as I could see, nearly all of these could be readily solved by more social support, especially support for aide assistance and attention to apt facilities (lifts that work, changing tables that are big enough), a point that I took Sara Goering to be making in one of her replies.
If you’ve got just one hour to burn, burn it on this, rather than the talks. You can link to it from the link above as well.
You can see other Ashley X posts at What Sorts right here.
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Thank you for keeping us posted on the case. You don’t sound convinced when you say breast bud removal and hysterectomy don’t attenuate a child’s growth. I think you’re right not to. I just want to point out that the Children’s included breast bud removal and hysterectomy in growth-limiting treatment in their agreement with WPAS. Please see the Exhibit T of the WPAS investigative report. It defined “growth-limiting medical intervention” as “any medical intervention, including surgery or drug therapy, that alters or is intended to alter a patient’s potential for normed physical maturation.” So defining the treatment, the hospital promised in the agreement that it would develop a policy to prohibit growth-limiting medical interventions for individuals with developmental disabilities without a court order. It is weird that they didn’t implement the promised policy but organized this self serving working group instead. Just as if they were hoping that their agreement/promise would simply disappear from people’s memory once the working group justifies the growth attenuation therapy with their “compromise”.
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