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Friday, January 30, 2009

Ashley Treatment Symposium

Yesterday I read an account of a symposium held in Seattle that dealt with the Ashley Treatment or what doctors like to call growth attenuation. The account I read was written by Emi Koyama, director of the Intersex Initative based in Portland and appeared on the website What Sorts of People. I was deeply concerned by what Emi wrote because it appears that the working group created to study the controversy surrounding the Ashley Treatment is akin to a steamroller designed to pave the way for growth attenuation. I may certainly be wrong as my knowledge of what took place at the symposium is limited to what Emi wrote. I also know that Adrienne Asch, a prominent disability studies scholar, is a member of the working group and find it hard to believe she would acquiesce to such an approach. I have been in touch with Benjamin Wilfond, a pediatrician and ethicist at the University of Washington who informs me that the symposium was taped and will be made available next week. I encourage all those with an interest in disability rights to watch what took place in Seattle when it becomes available. I will post a link when possible.

Two things struck me when I read Emi's assessment of what the Working Group has concluded. First, most members of the working group believe that growth attenuation is morally and ethically acceptable if the parents of profoundly disabled children request it. While it is possible that growth attenuation in rare cases may be ethically acceptable, the implications of this treatment and circumstances under which it is permitted are troubling. This leads me to wonder just how profoundly disabled a child must be? Are any other children aside from those with a profound cognitive disability going to be considered for such treatment? If not, what does this say about the value we place on the lives of those that have a profound cognitive disability? These are certainly important questions that must be answered. Second, I cannot help but think that the answer to enhancing the life of children with profound disabilities and their families is never going to be found stunting the growth of a child and removing body parts as was done to Ashley X. To me, the problem is largely social. We as a society must value all life and treat one and all equally. This is the ideal we must attempt to live up to. I do not care how robust informed consent is, surgery and growth attenuation does not seem like the appropriate solution. It is, for the lack of better words, simply the wrong thing to do.

My concerns are echoed by others including Emi who concluded her assessment of the symposium by writng:

I fear the social and political implications of the mainstream adaptation of growth attenuation as an ordinary part of contemporary society. I fear that what may be utility-maximizing on an individual level may, in aggregate, exacerbate the social climate where bodies, especially our crippled and queer bodies, are shaped and sculpted for the sake of social convenience and comfort. I fear that people with disabilities would be further pressured to reduce the “burden” they “impose” on the rest of the economy, and I fear that Working Group has already began going down the slippery slope, as they blur the eligibility criteria.

This conclusion is indeed a cause for concern. And I wonder if it is enough to stop doctors from attenuating the growth of children.


Becs said...

I know two couples who each had a daughter with a genetic condition that took the life of one girl and will lead to the death of the other within the next ten years.

In both situations, none of the parents ever discussed surgically altering their daughters to make their lives more convenient. It simply never occurred to them. Again, in both cases, puberty was viewed as something that just came with the territory.

On the other hand, I know a couple with a little girl who has a very rare genetic condition. Any upset or stress causes her blood pressure and heart rate to skyrocket into life-threatening territory. Their doctor has already approached them with the idea of a hysterectomy for the girl as the process of menstruation could cause her to go into uncontrollable crisis.

The Ashley Treatment should never, ever be considered SOP. Ever.

william Peace said...

Becs, Like you I cannot imagine how any parent could consider much less locate and convince a doctor to perform the Ashley Treatment. Growth attenuation is at a deep fundamental level grossly wrong.

I have followed this story closely for two years and wonder if in some rare instance it is theoretically possible growth attenuation is needed. I am not an MD and perhaps there is a on in a million chance growth attenuation is needed. I cannot imagine such a case but perhaps one exists. If so, safe guards must be put in place, both legal and medical, so abuse does not exist. I am shocked to write this. I spent some time watching MDs and scholars discuss this circa 2007 on the Seattle Children's Hospital website and was swayed enough to think growth attenuation at a theoretical level might benefit an extremely rare case. Ashley X was not such a case and her rights were violated as was her body. I wish I had some faith that the medical establishment could be trusted with such safe guards in place but am quite skeptical. Afterall Ashley X was illegally sterilized and those safeguards did her no good. So I have written a long paragraph and have in the process highlighted why the Ashley Treatment is dangerous and safe guards do not work.

FridaWrites said...

Becs, as someone who has autonomic system issues, I'd say the situation you mention sounds like a medical indication for hysterectomy (or at least consideration thereof). Similarly, considerable bleeding, endometriosis, dysplacia, or any other number of problems would be possible medical indications (imagining poor William clicking window shut). What you write is a good reminder to allow real flexibility for true medical conditions (though I'd be suspicious that sometimes symptoms would be exaggerated for convenience). I would urge in this situation that the daughter be included in the decision making process if she can be (as Ashley could not).

The idea of inhibiting growth for its own sake is scary. I did get the idea that Ashley's sterilization resulted from the physical difficulty of caring for her as she grew. This difficulty I can understand, though I really don't think I'd make the same decision (and I disagree with it). Physically I would be unable to care for a child in such a situation--I had considerable difficulty lifting or carrying my own baby--but it seems to me the answer would be better home health care resources. The considerations change or become moot depending on the resources available. I don't know her parents' situation. But if the other choice was leaving my child in an institution? In my state, that's unthinkable given the level of abuse and home health care waivers are hard to come by. Surely there are other answers but I don't know.

At what point does illegal sterilization stop? I thought as a society we were past this idea and worry that we'll soon again be discussing it for teens and young adults with a high level of physical or mental disability.

FridaWrites said...

It also strikes me, as someone who had growth plate injuries, that the growth attenuation process (bones) would be extraordinarily painful, and that these committees are leaving out such questions.

Doing some more reading, I'm just not buying the fibrocystic/breast cancer issue. The solution to complex family medical history is surely not castration (or its equivalent in women). And fibrocyst discomfort? That's just an excuse. Nothing compared to messing with bones or the pain of the mastectomy.

Becs said...

Frida, yes, the girl as some variety of autonomic dysreflexia along with developmental issues. She is not able to participate in any of the discussions between her parents and doctors. There has been no discussion, so far as I know, about limiting her growth.

One thing among many that troubles me about the Ashley treatment is that no one really knows - correct me if I'm wrong - what the girl understands.

Ralph said...

I'm a first time reader Bsd Cripple and what a subject to get my introduction with. Growth Attenuation in and of itself sounds and is awful in it's totality. But, and I say this in the truest way possible, things are a "sum of their parts

I for one agree with sterilizing the child if for any other reason than for the inability of her to deal with those issues.

I'm a C-6 Quad, sports writer AND parent and I say begrudginly..... I would do the same. As to the rest, those issues would be dealt with as they arose.

As Sam Clemens so aptly said "The truth is stranger than fiction." Yet we as people still have to deal with it regardless of it's difficulty.

Off topic, send me a copy of your book. I would love to read it, been working on my ten year "chair life" myself. Might plagarize you a bit ^_^.

Like I said above, great blog and I'll be back.

william Peace said...

Becs and Frida, I continue to watch the 2007 symposium about the Ashley X case. I am getting a much better perspective based on seeing the people involved speak for themselves. Articles, medical journals, blogs, and opinion pieces only tell part of the story. I will post an entry about this soon and provide a link so you can access it as well.

Becs, I get a sense from the above symposium and the doctors that have cared for Ashley X that she is a highly unusual child. The level of communication she has with her parent is limited. She responds to their presence and voice but is not verbal.

Ralph, Glad you like the bog. You sure have jumped in with the most controversial subject matter. As mentioned I cannot imagine a case where the procedures Ashey X was subjected to are medically or ethically acceptable--that is the bundle of procedures growth attenuation, hysterectomy, and breast reduction surgery. Radical treatments such as these are tied to our cultural perception of disability. I need not tell you that 30 years ago people with your level of injury were not treated--it was assumed life was not worth living. This decision was based not on the physical inability to survive but the social assumption life as a quad was not worth living. Likewise, hundreds of thousands of children were institutionalized in the post WWII era and we know that too was not medically necessary. If we accept growth attenuation what is next? Amputate the limbs of paralyzed people because they are prone to pressure sores and blood clots?

Jason Nolan said...

Thanks for this. Disturbing, and I'm glad I didn't miss reading it.

Personally, I could never condone 'convenience' interventions. Of course I think there are no issues in doing for a child what would also be done to the parents to help to improve their lives, but if you're not going to do it to an autonomous adult... I cannot understand how it can be ethical to do it to a child.

I appreciate the other commenters's thoughts as well.

This is exactly the reason I hid my disability and did not get help until my 40s. Luckily mine is hideable. I was actually told to do this by teachers.

william Peace said...

Complicit, Everything about the Ashley X case is disturbing. What I cannot get past is that the so called treatment, growth attenuation, hysterectomy, and breast bud removal, is only being considered for children with profound cognitive disabilities. What does this say about our society and perception of people with cognitive and physical disabilities? To me, this screams we do not value their existence. What if I asked my son's doctor about growth attenuation when he was young? What If I argued it was hard to care for him because I use a wheelchair and his life and mine would be better if he were kept small. I am sure the doctor would have thought I was crazy. So if we reject the Ashley Treatment for "healthy" children why do we consider it appropriate for children with a cognitive disability? No doctor associated with the Ashley Case has answered this question.

Jason Nolan said...

William. My thoughts exactly.

FridaWrites said...

Complicity, I found the article on passing/coming out at Ragged Edge very helpful as I moved back into a higher level of disability after a number of years of "passing":
Scroll near the bottom. There were times when I suddenly couldn't "pass" and my disability emerged in quite surprising ways to people who had no idea (in college in particular).

Jason Nolan said...

Thanks FridaWrites! It is a totally novel concept for me. Passing meant 'being strange' and I finally reached my functional limit, and got assessed. Passing for me is my normal, and not trying to pass is a struggle. But an important one, particularly because my students need to see a pwd as their prof as well as the children they work with.

william Peace said...

Complicit, I could never pass for normal. My wheelchair precludes that from ever happening. It is critically important for students, especially those in college, to see and interact with a range of people with disabilities. We need people with disabilities to take a prominent role in society and be in a host of positions such as a professorship. Until this happens people with disabilities will continue to be shunted to the side and individuals without a disability will not know how to interact with those that are different in the broadest sense of the term.

FridaWrites said...

I've also found that others come to me for support and mentoring as my disability becomes more known--people who have invisible disabilities themselves that I'd never have known about. As people begin to see disability as a continuum and an identity, we'll be able to make more of a difference with civil and medical rights and prevent backsliding with these.