Thursday, August 29, 2013

The Body Institutional

E.P. Reading through the testimonies, many families talk of their grief at having to put their grown-up children into a disabled people's institution after it became physically untenable to care for them at home. That strikes me as another kind of violation of human rights.

A.D. (Ashley's dad) ...We hope that the treatment will increase the chances for "pillow angels" to stay at home surrounded in the loving care of their families. Institutionalization is no way to live, for many it is the only alternative and yes, you're right, institutionalization is a form of human rights violation, especially when treatments exist to make institutionalization less likely

Ed Pilkington

Much can be written about this particular excerpt from the 2012 email interview with Ashley's father. There is the irony of Ashley's father's deep concern for the human rights of those with severe disabilities being institutionalized, all the while plugging the Ashley "treatment" like a salesman. There is the appalling oversimplification of the complexities involved in the decisions parents make to put their disabled children in out of home care. There is no social analysis as to why institutionalization is "bad". Most offensive, though, is the implication that parents who DO choose this option for their child or adult child are somehow violating that child's human rights.

Without even intending to do so, however, the mention of the Ashley treatment and her parents' assumptions about institutional care in the same breath allows for an intriguing comparison. Just how different is Ashley from an institutionalized individual with severe combined disabilities?

One might expect that Ashley's parents have not ever visited any care facility of any sort but at the same time that they hold certain ideas about institutionalized care. Typically, though, they likely believe such care involves removing the child from the familial milieu to a distant (possibly dismal) building far from the public eye, and setting them up in a group living arrangement where routine reigns supreme to the detriment of individual privacy, expression and choice, where the least amount of work expended on care is considered ideal. At best the care is "good": at worst there is abuse. By the way Ashley's parents constantly hold the "threat" of institutionalization over their own and the heads of all other parents of children like Ashley's, one can surmise they hold the most negative scenario in mind. They see it as a terrible separation from family life and where there will likely be neglect from inadequate care. One is painted the picture of an Amazonian sized and buxom Ashley, full of bedsores, isolated and left to languish on her now-too-small-for-her pillow.

But in truth, look what subtle similarities do exist between Ashley post "treatment" and life in an institution as intimated by her parents. By holding firmly to the view that Ashley would never change and always be "an infant", her parents established a rigid rule over her potential development, likely underestimating what is and could be possible for her. Ashley has been separated from her family, (and particularly from her sister) not by being removed from the home, but via a series of procedures that limited her size and removed all indices of her femaleness. She is isolated by virtue of the "treatment" that prevents her from doing what other children do: grow up. Her freedom of expression, again, to grow and develop intellectually into what a full-grown Ashley would be, has been compromised. Her privacy has been invaded via the media fury that her parents continue to subject her to, and her bodily integrity violated by the very act of removing her uterus and breast buds. Her parents have chosen to bow to a medical view of Ashley's disabilities, thus making Ashley the problem rather than the society that prefers not to support her or their efforts to care for her. They even assert that making her easier to care for was one goal of the "treatment": how nice and easy to put her on a pillow where she might stay for a while. "We call her our Pillow Angel since she is so sweet and stays right where we place her—usually on a pillow." (from HERE)

On the whole, our society much prefers people with disabilities to be out of sight and out of mind. Growth attenuating and surgically altering these individuals reflects this bias still. There is no concerted effort on the part of "normates" to support and include the atypical body and mind. We seek to distance ourselves from human beings with severe disabilities because they make us uncomfortable. In the past, this was done by relegating all to institutions. Now, in this day and age, we can use the "Ashley Treatment".

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