Last October I wrote about the latest article set to be published about the Ashley Treatment by Doug Diekema and Norman Fost. Here I refer to "Ashley Revisited: A Response to Critics". Well, the paper has just been published by the American Journal of Bioethics, AJOB, in its latest issue (V. 10, #1 January 2010). This was a dreadful paper when I read it months ago and it remains dreadful today. I need not rehash my criticism I posted in October despite the fact I am tempted to do so. What is of interest is the Open Peer Commentary. Nine scholars wrote short replies to the target article by Diekema and Fost. Of these nine commentaries I would consider one supportive and the other eight critical. It will take me a few days to assimilate all the critics various viewpoints. Suffice it to say I am delighted by the sharply critical replies. Most of the commentaries are polite to a fault but one stands out for the severity and tone of its critique. Here I refer to John Lantos, "It's Not Growth Attenuation It's Sterilization!" I do not know Lantos who works at Children's Mercy Hospital nor have I ever read a word he wrote but the man can write that's for sure.
Lantos appropriately praises Diekema for his 2003 paper "Involuntary Sterilization of Persons with Mental Retardation: An Ethical Analysis" that reviewed the controversial issue with a checkered past. The fact Diekema wrote this paper is fascinating as he of all people should have been acutely aware of the legal and moral issues involved in sterilizing a child like Ashley. Lantos points out Ashley's doctors should have sought a judicial review and the fact this was not done was a "major, inexplicable, and damning transgression". Worse yet, Diekema and Fost now defend that course of action or inaction. Others have raised this point and focused on the procedural violation but Lantos has a fascinating point to add: "The case becomes an example of arrogance and secretiveness by doctors and hospitals. It reinforces, rather than challenges, the strong societal prohibitions on sterilization for children like Ashley". Lantos also argues that the title of Diekema and Gunther original paper was misleading, an effort to get people not to look too closely to what was done, especially the removal of Ashley's breast buds. Lantos suggests that the original paper, "Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma" should have been titled "Attenuating Growth, Involuntary Sterilization, and Prophylactic Mastectomy in Children with Profound Disability: A New Approach". Ouch, that one hurts!
After reading all the commentaries about which I will have more to say in another post I was struck by Diekema and Fost staunch defense. They clearly believe they have done nothing wrong and that there are no flaws of any sort in their line of reasoning. Critics, especially those in the disability rights field are driven by ideology rather than factual information. This is not only wrong but ironic in that many errors in fact and contradictory statements have been made by Diekema and Fost since 2007. People such as Dick Sobsey and others have pointed out such factual errors. For more information in this regard read the excellent posts on What Sorts of People. What I find amazing is that an institution like Seattle Children Hospital can admit it made mistakes, state this publicly and yet Diekema and Fost cannot admit to any error or mistakes. Perfection I suppose must be a wonderful thing. Too bad we humans are incapable of this--even Diekema and Fost.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, January 14, 2010
The Ashley Treatment in AJOB
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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1 comment:
Although this may be seen as shameless self promotion, I think it is pertinent to your post.
Canadian Eugenics
Hygienic facades hide biological laws
Social policies painted in pale pea green
Nurses and doctors conduct Common Sense
In the province’s castration court
We prosecute genetic codes
Your mentally defecting threats
Immigrate from hidden homes
Unmarried women, First Nations, children
These imbeciles must be stopped
They’re costing us our cleanliness
Such inheritable criminal traits
Crave compulsory sterilization
Stored in unseen institutions in the interim
The chalk walls lobotomize organs
Isolate pathogen, exert control
Locate not legally competent tool
Not realistic for living
Throw this one away
It’s not docile enough
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