More Thoughts on the Ashley Treatment
Jun 23 07:13
Lately I’ve been thinking about the so-called “Ashley treatment.” It’s kind of hard not to, since it’s still a main topic on disability listservs. The most recent spate of Ashley-related e-mails deal with Australian author Anne McDonald’s recent op-ed in the Seattle Post-Intelligencer. McDonald says she, too, had her growth attenuated and so knows how Ashley might feel about it all.
McDonald, born in 1961, has “static encephalopathy,” just like Ashley. SE means a person’s brain damage won’t get worse -- cerebral palsy is a type of SE. Also like Ashley, McDonald can’t walk, talk, dress or feed herself, so doctors assumed she was severely mentally retarded and stuck at the 3-month-old level.
Since they have so much else in common, McDonald, who graduated with a bachelor’s degree in arts from Deakin University, wonders if Ashley, too, was misdiagnosed as severely mentally retarded. Perhaps Ashley’s mind works fine, suggests McDonald, but no one’s helped her find a way to communicate.
But the two situations are markedly different.
McDonald‘s growth was stunted because the staff at St. Nicholas Hospital in Melbourne, Australia, the institution where she grew up, didn’t feed her enough. When McDonald finally managed to leave St. Nicolas at age 19, a doctor said she might be able to grow taller with better nutrition. Today McDonald is 5 feet tall and weights 120 pounds. McDonald wrote a book about her experience, Annie’s Coming Out, which was turned into an award-winning movie of the same name.
As far as we know Ashley’s not neglected and she’s not being starved. Given the wide array of early-intervention treatments available in the U.S. today, most likely Ashley really is severely mentally retarded and unable to ever make decisions for herself. Her parents came up with the Ashley treatment, they say, to enable them to keep her at home after she grows up -- preferably without outside help. Misguided? Oh yeah, probably. Intentional neglect or abuse? I’m not convinced.
What was done to Ashley is not on par with what was done to McDonald. I imagine most people would rather have a radical hysterectomy as a small child than spend their entire childhood, hungry, stuck in an institution. And am I the only short person who’s bemused at how much value many in the disability rights community -- the same group of people who preach pride -- is placing on normal height? Although thinking about a little girl being spayed, for whatever reason, of course is morally upsetting.
I’ve wondered how cooperative Ashley’s doctors would have been if Ashley was a little boy. Although we don’t know how American doctors would react, thanks to a post on The Gimp Parade, we do know how Turkish authorities responded to a couple’s plea to keep their severely disabled son small and manageable.
“Umut Mert would be castrated if he received Ashley’s treatment,” said Saim Yeprem, Ph.D., from Turkey’s Religious Affairs Directorat on Today’s Zaman. “Castration is opposed by all religions, not only Islam.” Needless-to-say, at this time Mert’s masculinity is no longer being threatened.
What if Mert was a little girl like Ashley? Perhaps then his parent’s request might have had a chance, since many societies still think a male’s genitalia is somehow more valuable than a female’s.
And what about Mert’s parents? And Ashley’s, for that matter? They didn’t go the route McDonald’s parents did -- their children are at home with them, where they are loved and fed. For now.
What would have to change in order for parents like Ashley’s and Mert’s to comfortably be able to keep their children part of the family without resorting to morally-questionable “therapies” or actions? Because what’s done is done. What we need to think about now is how to make “Ashley’s treatment” unappealing to parents.
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Jun 23 10:53
I agree the 'treatment' itself must be made unappealing through change, but it should not be an acceptable treatment regime, no matter if a parent wants it or not. It will not be done. The medical profession is simply not allowed to do whatever a parent desires. At a conference this week I met many independent journalists (representing zines, newspapers, and radio shows) & spoke about Ashley. Many will be investigating the it further & promise to report on it. Someone there from NOW asked if I had contacted NOW & when I said yes she could not believe they were not all over it. I tried to present a balanced case as to why it was done & that just incensed most further. The issues brought up by Ashley are not just disability issues, but also women's issues. When I said her parents loved her & were trying to protect her as they saw her acquiring secondary sex characteristics as putting her at greater risk for abuse - the anger on many young women's faces was astonishing. Never again.
Jun 23 12:21
"What was done to Ashley is not on par with what was done to McDonald." I agree. I also agree we need to provide more options to parents who choose to spend their lives caring for a child with significant disabilities rather than putting the child in an institution. I honestly don't get why people are so focused on what happened years ago to Ashley when there are many more current issues, just as dramatic and life altering, facing PWDs and women that occur on a daily basis that can be changed.
Jun 23 12:40
What was done to Ashley draws attention to many issues (whose current answers may need to change):
* Who has the right to speak for a person who cannot speak for them self? * How do we establish how aware a person is of their environment? * How do we establish IQ? * How do we establish development is arrested? * Is it OK to fix the bodies of children with disabilities or should we wait until they are adults or of a certain age? * If breast or uterus removal is going to be considered as a preventive measure should a certain amount of cancer history be required before considered for a minor child? * If pregnancy is not desired for a child who may be at greater risk for abuse, why use a permanent method - why not the patch or depo provera which are both reversible? * When a hospital breaks the law and only gets it hand slapped, what does it say to other hospitals about assuring a patient's rights? * Why were no people with disabilities on the ethics board?