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Wednesday, November 10, 2010

Ashley Treatment in the Hastings Center Report

In the November/December issue of the Hastings Center Report growth attenuation and the so called Ashley Treatment is discussed. A subscription is required to read the feature article entitled "Navigating Growth Attenuation in Children with Profound Disabilities". However, the responses, excluding a commentary by Alice Dreger, can be accessed for free. I strongly urge readers to visit the Hastings Center website and read the most recent report. I have always been intrigued by the Hastings Center. It is a bioethics think tank that produces first rate scholarship. I do not always agree with what they publish--in fact I have strongly disagreed with some articles they have printed. However, even in disagreement I never questioned the academic integrity of what is produced. In addition, I have found such disagreement fruitful as it forced me to hone my views in response. Thus I am quite happy to see the work produced by the "Seattle Growth Attenuation and Ethics Working Group" in Seattle appear in the Hastings Center Report. It is my hope that the feature article and the responses will prompt a more nuanced debate about growth attenuation. To date, those for and opposed to growth attenuation have utterly failed to open a reasoned debate. While I am firmly opposed to the Ashley Treatment, I am willing to listen to its advocates. I only wish the same courtesy was extended to me and particularly those in what some people such as Norm Fost derisively refer to as the disability community.

The Hastings Center Report has published the following:

Feature article (subscription required)

Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns
Bejamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group

Responses (free):

Offense to Third Parties?
Norman Fost

Discrimination against Children with Cognitive Impairments?
Eva Feder Kittay

Against Fixing a Child—A Parent's View
Sue Swenson

In Support of the Ashley Treatment—A Parent's View
Sandy Walker

Another Voice (subscription)

Attenuated Thoughts
Alice Dreger

I will leave it up to the reader to assess the individual contributions above. What I will do however is briefly quote each response and my reaction.

First, the words of Norm Fost:

"We [the working group] heard about disagreement and distress because a caring set of parents, with consultation from competent physicians and the support of an experienced ethics committee, pursued a treatment plan that offended the personal beliefs of some individuals and groups about the treatment of people with disabilities."

Fost is correct, the Ashley Treatment" offended many people with and without disabilities. But he utterly misses the point that Ashley X civil rights were violated. This is not an opinion, this is a statement of fact, a legal fact in the Sate of Washington. What Fost objects to the most is "third party" intrusion. This too is not a tenable position.

Second, the words of Sandy Walker:

When Ashley’s story became public, I was surprised by the reaction of those who identify themselves as “advocates” of persons with disabilities and their families. They spoke of the “perspective of the disability community,” as though Ashley and her family were not a part of it. I felt disenfranchised by the very organizations and individuals that were put into place to protect Jessica and our family. I also found that many of those speaking out against growth attenuation did not understand the enormous physical implications and limitations of children as involved as Jessica.

This is profoundly disturbing comment. We, myself included, in the disability rights community have failed this woman and her family. This cannot be tolerated. While I do not have a child with a disability, I certainly understand the discrimination children and adults with cognitive deficits encounter is far more pronounced than what I experience. This is inherently wrong and we in the disability community much do more to reach these families. They should never feel so disenfranchised.

Third, the words of Sue Swenson:

We would never allow our son to be placed in an institution. Institutional placement of children or adults with profound disabilities—being shut away from the community, rather than engaged with it—is no longer considered an option in civilized places. Fortunately, family support and home- and community-based supports for adults offer modern alternatives. Family support—services whose aim is to help families nurture and enjoy their disabled child at home—helped us learn to let go and gave us information about raising a severely disabled child: how to position him so he could participate in a broad range of activities, how to transfer him without lifting, how to support his mobility and find useful equipment, how to include him in everything, how to figure out what he wanted, how to think about his rights.

I can only state my categorical agreement with the above.

Fourth the, the words of Eva Kittay:

The Seattle Growth Attenuation and Ethics Working Group settled on the compromise that growth attenuation should be limited to severely cognitively disabled and nonambulatory children. I respectfully disagree. I do not believe that growth attenuation is ethically or medically appropriate, even when limited to children with profound developmental and intellectual impairments.
The compromise position rests on the assumption that the constraint will avoid many of its possible abuses. The problem is that the limitation is itself already an abuse. If growth attenuation should not be done on children without these impairments, then it should not be done on any children. To do otherwise amounts to discrimination.

Forceful words eloquently and wonderfully stated. Kittay's response is sobering. A class of people has been set apart and are potentially subject to a "treatment" that would be deemed objectionable if they were ambulatory or did not have a cognitive deficit. What does this say about the way our society views such people?

What to make of all this? I think something productive can come out of what the Hastings Center has done. I suggest the center consider organizing a one day conference on the Ashley Treatment. I would use the prestige of the Hastings Center to force people with entrenched views to come together in a civil fashion. I think people like Douglas Diekema and Norm Fost need to listen to their fiercest critics in the disability rights community who they have ignored or dismissed out of hand. In return disability rights advocates must treat these men with respect regardless of our opposition. The Hastings Center Report is a step in the right direction but much works needs to be done. Alice Dreger grimy noted: "I was invited to join the Seattle Growth Attenuation and Ethics Working Group—collective author of the lead article in this issue of the Report—but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on." Rather than be "torn asunder" I think it is in our collective best interest to work together.

2 comments:

Eric said...

It seems to me, the father of a child EXACTLY like Ashley, and a therapist with over 20 years experience in treating both disabled adults and children, that growth attenuation in some form or other is here to stay, it needs to be worked out, but there is no denying that there will always be a group who feels their needs are met with this series of procedures and it will not be deemed "illegal", citing the fact that Ashley X's treatment was technically an illegal act with no known ramifications for the participants.

It would also seem to me that it boils down to categorizing the rights of what I call absolutely or extremely disabled children whose cognitive faculties and disabilities will always preclude their expressing will.

This is very very tricky territory, since the medical establishment, being the main experts consulted, since parents are not considered experts, will always insinuate that "it's best for them", no matter how atrocious the procedure they dream up sounds.

The fallibility of the pro Ashley camp's argument lies, in my present understanding with the fact that such a procedure would never, as already stated in your post, be performed on a person able to express their unwillingness.

"He doesn't know, She doesn't know what's good for her!" will most certainly be the final bastion of logic for the pro Ashley X procedure group and I fear, looking at history, that many parents will be influenced into taking this option, thinking simply that THEY need to decide for their child since he/she can't when there are so many other factors to consider, never brought up by the pro Ashley X procedure.

william Peace said...

For better or worse growth attenuation is a fact of life and a "treatment" that will not be abandoned. I am opposed to it in theory and practice and am fascinated by the ethical dilemmas it raises. Why I wonder do its proponents so forcefully push this as an option? Surely they must see the ethical implications and possible abuses. The 1950s and growth attenuation in young women a prime example. See Normal at Any Cost.