Jul 07
18
The controversial Ashley Treatment
The Ashley Treatment http://ashleytreatment.spaces.live.com/ So very sad and shocking when you first hear about it. But the parents do a good job of describing the numerous health and comfort benefits to the very controversial Ashley Treatment. It seems that there is improvement of quality of life when you first read it. And on their site, you’ll find testimonials from other parents applauding their decision, some even saying they wished they had been able to do the same with their own severely disabled children. http://ashleytreatment.spaces.live.com/blog/cns!E25811FD0AF7C45C!1826.entry.
Then again, there are parents of severely disabled children speaking against it as well. http://www.pkblogs.com/dreammom/2007/01/pillow-talk-debate-over-ashley.html
And when it’s justified on the grounds that as a secondary benefit, reduced breasts won’t ‘sexualize’ her towards her caregiver, or how it’s ‘grotesque’ to be full-grown and fertile with the mind of a baby, think it defeats their purpose. Think it might give the impression that they’re more concerned with other people’s attitudes and reactions than what’s best for Ashley.
Cory Silverberg writing on About.com makes such valid points:
http://sexuality.about.com/b/a/257889.htm
Ashley’s parents claim that they wanted to prevent her from developing breasts because breasts might increase the likelihood of her being sexualized and sexually assaulted.
Infants are sexually abused, and children of all ages are sexually abused, and sexualized in the making of child pornography. The idea that her having breasts make her a greater target is ludicrous. Ashley’s parents offer up their real motivation for this themselves when they wrote that the real grotesqueness in the situation is “the prospect of having a full-grown and fertile woman endowed with the mind of a baby.” Reading that sentence out loud makes me physically ill..
.. In the BBC article, one of the doctors on the committee is quoted as saying that the committee agreed “because the parents convinced us it was in fact in this little girl’s best interests”. That ethics committee was not there to protect the parents; they were there to protect the patient. They failed completely in this task and should simply be ashamed of their complicity in this decision.
I do a lot of work around sexuality and disability, including working with people who have developmental disabilities (the kind of people who are often referred to as having the mind of a six year old). I can tell you that consent is never a black and white issue. I can also tell you that cognitive ability is never black and white. Saying that Ashley has the mind of a three month old is, at best, quoting someone’s educated guess. Ashley’s disease is rare, and no doctor or parent can with 100% certainty predict the course of the disease, or what her entire life living with a disability will be like. It also needs to be said that cognitive ability is not the same thing as lived experience. Someone may not be able to read, but it doesn’t mean they can’t feel, communicate, experience pleasure as well as pain, and live. These are all possibilities. But many of these possibilities have been ripped away from Ashley, and regardless of how well meaning her parents no doubt are, we should never pretend that their actions are acceptable.
“Because it’s easier to carry her around” is not a compelling reason to permanently stunt someone’s growth.
“Because I couldn’t stand the thought of her being pregnant” is not a reason to permanently make someone sterile.
And you wonder, was this really the only option they had? http://www.dredf.org/news/ashley.shtml
Modify the System, Not the Person
“Benevolence” and “good intentions” have often had disastrous consequences for the disability community. Throughout history, “for their own good” has motivated and justified discrimination against us. The recent story about nine-year old Ashley, a child with severe disabilities, exemplifies this problem. When she was six, Ashley’s parents requested that their daughter be treated with medications (large doses of estrogen) to halt her physical growth, and with surgeries to remove her breasts and uterus ..
.. Where, we wonder, was the network of programs and services that exist in every state when Ashley’s family decided the best option was to employ medical procedures that violated their daughter’s autonomy and personhood? Were other families whose children have disabilities like Ashley’s asked to talk about their experiences and how they solved problems as their children grew to adulthood? Where were the social workers and advocates who should be providing alternative perspectives? Why did the system fail this family and their daughter? That, it seems to us, is a fundamental question.
Here is what David had to say. David has cerebral palsy.
http://growingupwithadisability.blogspot.com/
I feel weariness and sadness that we live in a society where a parent feels that medically and surgically altering a 6 year-old’s body to deal with growth is their only choice; a society where medical and ethical professionals actively encourage this desperate measure, rather than actively and creatively encouraging modification of our social systems to provide practical, economic, health, emotional and respite support of their clients (both child and parent); a society where many are angry with those who bring such injustice to light. ..
.. For those of you with no personal experience living with or caring for a person with physical disability, there are ways of doing many of the things that are difficult. For example, I, weighing about 140 pounds, have a lift that my parents use to lift me off of the floor. I also have a wheelchair that reclines and lets me change position to minimize the wear and tear of staying in one position for an extended period of time. When I was younger, I had respite workers. These were people that were paid by our community support services, chosen by my parents, who took me out for fun, while giving my parents a break. I enjoyed spending time with them, we developed a good relationship.
This is what a member of the Board of Directors for the Institute for Ethics and Emerging Technologies had to say in defense of the Ashley Treatment, quoted by Ashley’s parents:
http://ieet.org/index.php/IEET/more/809/
“A colleague of mine noted that there are some potential abuse issues that need to be addressed. For example, is the resource-crunched medical establishment more inclined to have parents take the burden of care? Is this a way of passing the buck? Is the hysterectomy really necessary?These are valid concerns, but I think they can all be addressed.
First, I believe the wishes of the parents are what is driving this decision and not the demands of the medical institution. In this case, it appears to me that the needs and desires of the parents are being met.
As for the hysterectomy, I have to question the value of keeping this girl fertile. If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
Doctors could not determine a diagnosis or a cause, so they gave her condition that big fancy sounding name that the medical profession uses, to make it seem like they know more about it than they actually do – “static encephalopathy of unknown etiology”, a condition they don’t expect to improve, but don’t expect to worsen either. Ashley is but 9 years old, 6 years old when the decision was made. Things do happen. People do grow, develop and change.
And who’s to say she only has the mind of a baby? Are they in her head and heart? Are they mind-readers too? To be more accurate, she perhaps looks like she only has the mind of a baby. But people are notoriously quick to assume and judge from what is really a position of ignorance. Even the neurologists.
Just ask the mega savant Kim Peek and his father. Or ask Temple Grandin, and I’m certain countless others, whose parents were told that their children should just be institutionalized and forgotten about. That they would never improve and had no potential.
Since when has medicine, even neurology, had the expertise to predict anyone’s potential. They’re not even experts in their own field – disease. Or do you know of any physician who’s come up with a cure for cancer yet? MS? The common cold? Should I go on?
This is the part that scares me, the ‘medicine/science is God’ attitude. The pronouncement of a doctor limiting anyone’s potential from a position of arrogance and otherness. Deciding that anyone – lacks the cognitive capacity to experience any sense of indignity. That attitude not only scares me, it brings me to tears.
Not all physicians and bioethicists share that attitude. A neurologist who examined Kim Peek had this to say -
http://www.sciam.com/article.cfm
“Kim Peek – the inspiration for Rain Man- possesses one of the most extraordinary memories ever recorded. Until we can explain his abilities, we cannot pretend to understand human cognition.” – Darold A. Treffert and Daniel D. Christensen
I appreciate their humility so much. Wish more doctors, neurologists and bioethicists would learn to humbly say .. It appears … We don’t know … Seems like, but … and finally … We’re not God. Because they’re not and they have NO RIGHT to act as if they are!!
Found such interesting comments on the following blog about limiting potential and low expectations. You might be surprised to learn about the prognosis given to most children with cerebral palsy in the past.
http://thegimpparade.blogspot.com/2007/01/i-am-tired.html
MrSoul said…
Mental age, my ass. When I hear the words “mental age”–I reach for my revolver.
If my mother (R.I.P.) hadn’t had such a huge show-biz ego, and hadn’t simply dismissed the prognosis given to most children with CP 50 years ago, I’d be as ignorant as anyone else warehoused for a lifetime. As it was, no kid of hers was going to be “retarded”–and that was that. Not an option. As a result, I wasn’t.
I wonder how often it works the other way, with parents simply accepting the conventional wisdom dispensed by the MDs? (Medical Deities)
Blue / Kay Olson said…
Mr. Soul, I recall David Pfeiffer, who ran one of the academic disability studies organizations (SDS) until his death, saying something once about how IQs of the average “mentally retarded” people went up significantly when fewer were being institutionalized. Really not a coincidence, I think.Blue / Kay Olson said…
Some other commenters haven’t been thrilled by what this may say about actually “retarded” folks.Noted.
But part of the stigma of developmental disabilities is also the low expectations, isn’t it? Terminology aside, I wonder what the world would look like if those diagnosed as intellectually inferior were not limited by what people believe they can’t do. There are a lot of people out there who were told they didn’t have the brains to enter a spelling bee or whatever. I think this does more to show we are all of one group, than divided between those who can and can’t.