Tuesday, October 23, 2012

The Ashley Treatment Redux: Mea Culpa

Peter Singer

After posting a benign comment [here] on the Ashley Treatment, I feel obliged to revisit that topic. 

I was writing under the influence of two Guardian articles. One, which I reprinted there, to which I linked, was a neutral report. The second, which I did not mention [it's here], was a positive piece by Peter Singer, professor of bioethics at Princeton University, New Jersey and Laureate Professor in the center for applied philosophy and public ethics at the University of Melbourne.

Among Singer's arguments was this one: 
 "Ashley's mental age was that of a three-month-old. She was unable to walk, talk, hold a toy or change her position in bed. Her parents were not sure she recognised them. There was no prospect of her mental condition ever improving.... The aim of the surgery was to keep Ashley small and light, so that her parents could continue to move her around frequently and take her with them when going out with their two other children. The uterus removal was intended to spare her the discomfort of menstrual cramps; the surgery to prevent the development of breasts aimed to make her more comfortable when she was lying down or had a strap across her chest in her wheelchair."
Singer sold me. 

Author of the blog
Single Dad/ Disabled Daughter

and daughter
However having now read two scathing attacks on the Ashley Treatment, I have made a complete 180. One, also from The Guardian [here], is by a writer with disabilities herself, SE Smith.

The second, published [here] in the magazine Psychology Today, is the perspective of a father of a disabled child and a fellow blogger. He writes at Single Dad/ Disabled Daughter.

Here is Ms. Smith's conclusion:
"What the Ashley treatment points to is the profound impact of ableism on society. Ashley and other children are subjected to this treatment because they live in a world where people with disabilities are undervalued and their parents fear their capacity to care for them and move through public spaces with them. Their approach to this problem focuses on violating their integrity, rather than confronting the society around them to demand full rights and access for people with disabilities.Keeping people frozen in a forcible state of underdevelopment for convenience would be condemned if procedures of this nature were performed on non-disabled children, and rightfully so – it would be viewed as an utter violation of humanity. Disabled children are not, apparently, accorded the same respect. The Ashley treatment is never ethically permissible, except under a framework that truly believes disabled people are not human."
And here are some excerpts from the father/blogger piece: 
"I know what raising these children is all about. I know from 20 years experience. And yes, I can talk about Growth Attenuation, about the Ashley Treatment, from as strong a point of view as Ashley’s parents and the other parents who have chosen to mutilate their children. My daughter is fully grown, over the weight where I can or should physically lift her, she is large breasted (only mentioned because Ashley’s parents feared this and subjected her to a mastectomy at age six rather than in the future have her need a “supportive harness” for her breasts – something the rest of us call a “bra”), and yet, she is cared for lovingly and with minimal difficulty. I am single, I own a small company, and yes, I care for a fully grown severely disabled woman, my daughter. Note that contrary to what other articles say, there are no legal questions about the original Ashley Treatment. The hospital has publicly admitted that the parts of the treatment were clearly illegal. The doctor committed suicide soon afterwards so his input into the controversy is not available... My daughter, Pearlsky, was very much like Ashley at the same young age, to a scary level of comparison. Today, Pearlsky is a young woman, well cared for, has a good quality of life from her point of view, and her body is intact. Ashley is in a modified body, legally and illegally modified, and to what end? Is she better off than Pearlsky? Or is the real question, are her caretakers the ones better off than I am? ...The people who think this is most abhorrent are “self-aware disabled people.” The closest analogue we have to Tom or Ashley specifically are “self-aware disabled people.” We cannot ask Tom [another child who underwent the treatment]  or Ashley or Pearlsky if it is okay to surgically and or chemically change / alter / mutilate them, but we can talk to some severely disabled people who can communicate, people as close to Tom or Ashley or Pearlsky as we can get, those who do have communication, and you know what? They react “most harshly” to this procedure, according to this mother."

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