Miniature People on the Pillow, or How to Experiment on the Developmentally Disabled in Broad Daylight

AT his blog devoted expressly to “The Ashley Treatment” huahima details the mysteries surrounding the surgical procedure that was performed on a developmentally disabled little girl that has, in effect, rendered her forever small.

huahima writes:

 
“In the December 31, 2007 update of his blog, Ashley’s father revealed what he was considering to do to promote “the Ashley Treatment” for the quality of life of other Pillow Angels in the world. …”

One direct outcome of this effort to promote the procedure has been reflected in two panel discussions held at the hospital in Seattle where the original surgery was performed on the little girl we only know by her assumed name. 

At Eminism.org you can read a first person account of the panel discussion about this controversial treatment and I recommend this for in point of fact there’s a stampede underway at the Seattle Children’s Hospital to justify growth attenuation surgery for severely developmentally disabled children. Its of particular interest that disability studies scholars and disability rights advocates have not been part of these panel presentations. The views of the disability rights communities are characterized by panelists but they are not given primacy in the roundtable.  This is not surprising for the dynamic of “talking over” people with disabilities is well ingrained in both academia and in the medical professions. The justification of “pillowing” people is, in rhetorical terms pretty much “Ableism run wild” or the “same old same old” and one could dismiss the whole matter were it not for the magnitude of the ethical violations that are being justified by this post-modern game of relativism disguised as medical care.

Over at Bad Cripple one can read a superb post on the collision (collusion?)of “intrigue and ethics”surrounding the panel’s formation and its findings.  It is clear that Ashley’s father who works for Microsoft is working very assiduously to lobby for the ethical adoption of human experimentation in the name of utility–its so much easier to care for a severely developmentally disabled person if they never grow larger than a pillow. Resident in this argument (and a view that’s widely accepted on the Seattle panel) is that profoundly developmentally disabled children will never know they’re being rendered permanently small and that this is therefore not unethical since consciousness is central to human dignity.

This is of course a phenomenological argument and not an ethical one and its interesting to see how easily academics and MDs adopt it. “Look at the shiny watch and listen to my soothing voice, you’re getting sleepy in the tendrils of a convex argument, oh so sleepy, etc.”

Why one would never know that removing a child’s uterus, taking out her breast buds and bombarding her body with hormones is, in point of fact, entirely unproven as a medical procedure and that in turn no one really knows what this does to a human being–or to put it another way, you’d never guess that outright experimentation is being justified in ways that are not at all dissimilar from the work of the eugenics movements or the activities of German doctors in the late thirties and early forties. One can read more about this over at Bad Cripple.

Money and sophistry are such dear friends. The insertion of human experimentation in the name of parental ease can be wrestled into a kind of Benthamite argument but as doctors I know personally have said “off the record” “It doesn’t pass the sniff test”.

But of course what’s really happening in Seattle is the orchestration of spin doctors doing the mash for the medical industrial complex. The smell of money covers a lot of odors.

S.K.

Author: stevekuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University View all posts by stevekuusisto