Not much has changed in the last year. CNN.com has a follow up story by Amy Burkholder about the Ashley Treatment. The comments posted to the story and appended interview with the "Pillow Angel" parents are overwhelmingly supportive of the so called Ashley Treatment. Those opposed to the parents decision are characterized as radicals and the parents refuse to reveal their identity because they want to protect themselves and their children from the media frenzy.
After reading the CNN story and the interview with Ashley X parents I am truly depressed. Disability rights is simply not making any progress. Sadly I think the social acceptance of the civil rights of disabled people has regressed substantially in the last year. The Ashley Treatment is an extreme but one that highlights the divide between those with and those without a disability has widened. The mainstream media repeats and accepts as fact what Ashley X parents write. Millions of people, if Ashley X parents are to be believed, have visited their website and all except for a tiny minority of disability rights activists support them.
I find the position of the parents self serving. They bemoan the media frenzy that surrounds them yet keep their blog active and grant interviews to CNN. They chastise disability rights activists and scholars for their extreme views yet maintain parents seeking the Ashley Treatment must be diligent and tenacious. The parents estimate under 1 % of children with a disability are like Ashley X. No foundation in fact exists for such a figure.
Those that oppose their decision are characterized as a "loud minority", infuriated that their decision does not conform to a disability rights ideology. This is pure bull shit. I am sorry to use such vulgar words but I am perplexed how the parents can dismiss the entire disability community. I find comments such as the following misleading at best: "We are in the unfortunate situation today where activists with political power and motivated by their ideology have successfully taken a potentially helpful option away from families whose pillow angels might benefit". If disability rights activists had such power it is news to me. In fact, the disability rights perspective has been totally ignored by the media and medical ethics professionals.
The parents maintain Ashley X and people with all other disabilities are vastly different--a chasm separates the two and no slippery slope exists. This may help the parents sleep at night and dismiss the views of others without thought but such a position is dead wrong. Slippery slopes exist and I for one do not consider my social condition to be any different from Ashley X. I know people often think I cannot walk and as a result cannot think. Whether I like it or not I carry the same stigma as Ashley X. My life and Ashley X life is simply not valued by mainstream society.
The future for disability rights is grim and people such as Ashley X parents are of no help. Like Christopher Reeve, they are so overwhelmed by their own interests they refuse to consider the broader implications of their views. Ashley X parents are even considering writing a book and telling their story in other ways. I shudder to think of the options available and I cannot think of one positive thing that could result. The Ashley Treatment thus remains as depressing today as it was a year ago.
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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Wednesday, March 12, 2008
Ashley Treatment: First Year Anniversary
Posted by william Peace at 10:50 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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I was horrified when I heard about the Ashley Treatment last year and still horrified today.
When I hear "Pillow Angel" I want to scream. That term is so dehumanizing. Sure it conjures up sweetness and warm fuzzy feelings but it describes the most horrible medical experiment since the Nazi's.
This story just proves to me that we as human beings have the ability to fool ourselves into believing that what ever we want is just and righteous. We can convince ourselves that what is convenient for use is the best for another person. I don't care about all the pretty excuses or reasons they offer they dehumanized their daughter. That is wrong!
What next do we cut off the legs of my dear friend because he's never going to use them again? Oh wait some insensitive jerks have asked him why doesn't he just do that.
AND how do they KNOW what will happen in her future? How many parents of children with Downs were told by the experts, the doctors, that their children could never live a normal life. I respect those families who said we want our children to have the best life they can. I think we should support those parents who let their children grow up, who taught them to value themselves despite what the medical community said and who loved them for who they were. Why is the world supporting this self serving family?
What next we let babies with disabilities die of starvation because they wouldn't live a 'normal life'? Oh wait we are already doing that.
Everything about the so called Ashley Treatment is depressing. I cannot think of one positive thing to come out of this story. It is really a horror story from beginning to end--a modern day Frankenstein.
I'm glad to see I'm not the only one who is sickened by this mess. I'd read about the "Ashley treatment" last year. Now this update article came out and since I am blogging I thought I'd post about it and provide my two-cents. However I wanted to take a look around and see what some other disability-rights advocates were saying before I began tearing the thing apart (I worked with people who have disabilities for over 20 years).
I can't believe these parents claim they're actually doing this for "Ashley's" benefit. Ugh.
Statement from Ashley's parents no longer surprise me. What I do not understand is the mainstream press refusal to mention the reaction of disability rights activists or scholars. The CNN article gives the impression that the parents decision was correct. Replies to the press coverage are scary and overwhelmingly supportive of the parents.
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