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Sunday, March 27, 2016

Growth Attenuation: Its 2007 Again

It has been a week or so since the New York Times Magazine section published an article on growth attenuation. The essay by Genevieve Field, "Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth?" has been savaged by disability rights activists. Link: I get the anger and frustration expressed by my crippled brethren.  I am staunchly opposed to growth attenuation and have published essays against growth attenuation in a wide variety of academic and mainstream publications. My views have not changed much since 2007 when the news about Ashley X came to light. The response to the New York Times essay is very similar to what took place in 2007. Instead of Doug Diekema being attacked this time it is Field. I spoke to Field two years ago. I liked her. She wanted to get into the nuances, the details of what disability rights is about, and more specifically what was it like for care givers to provide physical and emotional support for those with severe disabilities. She seemed different to me. I have spoken to many mainstream journalists about growth attenuation and almost all of them already had an angle. Field struck me as different. Had I not trusted her our conversation would have been very short.

Over the last two years I assumed her story did not work out and she had moved on to another story. Then all of a sudden my Facebook account was flooded with messages. Over the weekend I weighed in on some long discussion threads. I thought the criticism she was subjected to was too harsh. I said as much and my peers in disability rights let me have it. It is not the criticism that I objected to but it was the harsh tone. Again, I get it. Field, to my knowledge, does not work within disability studies, disability rights or bioethics. Why did the New York Times select Field and not a scholar such as Eva Kittay who has written eloquently about growth attenuation and has daughter with a severe disability. This is an important question. I suppose my reaction is different in large part because the essay by Field did not bother me. Did I like it? No. Did it portray opposition to growth attenuation badly? Absolutely. My first thought was typical New York Times. The so called paper of record regularly screws up stories about disability. My expectations for the New York Times  when it comes to disability is very low. The paper, as many will recall, had Peter Singer write the obituary for Harriett Mcbride Johnson--the utilitarian philosopher who, all things considered, thought she should not be alive. I was just happy the essay was not written by someone who supported growth attenuation.

I was very angry in 2007 when I first learned about the Ashley X case. I expressed that anger in my first essay about growth attenuation in Counter Punch. Link: My anger got me nowhere. What I learned since growth attenuation first came to light is that anger in this case must be contained. In my estimation the parents that are willing to entertain the idea of growth attenuation are zealots. The physicians who are willing to perform growth attenuation are well meaning but narrow minded. They see just one thing: the patient in front of them. Ignored are the larger ethical implications. Ignored are the gross lack of social supports for parents who care for a child like Ashley. Oh, lip service is paid to the inequities that abound. Yet there is always the proverbial but. The but is social supports are currently absent. We are living in the here and now. The Hastings Center Report and the Seattle Working Group suggested if growth attenuation is going to be performed we should study it. Well, that is not happening either. The ethical discussion surrounding growth attenuation is a mess.

Back to Field. I sent her an email. She was taken aback at the criticism and recalled I told her I do not envy you. The reaction could be swift and nasty. I was right. I was right because my essays in opposition to growth attenuation always generates email. The email I get is not reasonable. It is nothing short of hate email. But something seemed off to me about Field's essay. It did not reflect our conversation. She struck me as balanced. The essay she wrote was not balanced. Short shrift was given to disability rights opposition and the larger cultural implications of growth attenuation. Worse, disability rights activists came across as zealots. A nod was given to the opposition in the form of Kittay's work and a link to one of her best essays was included in Field's essay. Something was off. It turns out that her original essay submitted was far too long. Indeed, it was twice as long as requested. Here the New York Times editorial board comes in. The editors mangled Field's long essay. Did Field make a very basic journalistic error? Apparently yes. I am not a journalist but I have submitted many an essay for academic publication that was far off in terms of words.

I am not here to defend Field. She is taking the heat and can take care of herself. My point is that reacting with hostility is counter productive. The severe criticism of Diekema was framed in a way that made disability rights opposition to growth attenuation look bad. Worse, Daniel Gunther's suicide in 2007 was falsely connected with growth attenuation. This was not the case. The man experienced clinical depression. I made mistakes too. My anger got the better of me in my first essay about growth attenuation linked above.  If there are zealots involved in growth attenuation it is not present within those who oppose growth attenuation. To me this remains the core issue. Ashley X parents enjoy and safe guard their anonymity while waging a public campaign to promote growth attenuation. They continue to operate pillow and do periodic interviews in various newspapers. They provide support for desperate parents who are considering growth attenuation. I assume they also provide recommendations for physicians who might provide this so called treatment. I find this deeply objectionable if not disingenuous. Are they concerned about their daughter as they maintain or are they growth attenuation advocates? Exactly who are the zealots here? The fact is growth attenuation remains a radical surgical intervention for a social problem. Less than 100 children have been subjected (mutilated) by growth attenuation. Virtually all parents who care for a child with a severe disability gets this. They move on with life. They provide love and support for their children. This is a new class of people created by advances in medical technology we don't want to think about. Our lack of thought results in a human rights violation--the lack of social supports for those most in need is woefully absent. Parents and the severely disabled people they care for struggle mightily. What do disability rights scholar and activists do? Not enough in my estimation.

Given the death of my mother last week, I am not only in mourning but retrospective. Today I read with chagrin my Counter Punch article. Anger was my mother's primal go to emotion. I do not share this trait though I do share many others. Since she died I have not had a drink. When bad things took place my parents took the bottle of scotch on the kitchen counter and put it in the cabinet. When things are bad they told me don't drink. A life lesson was learned. The point here is that controlled anger is good. Anger directed outward was used by Ed Roberts and he called it cripple power. So looking at what I have written about growth attenuation the essay I like the most appeared in Bioethics Forum and was titled "Ashley and Me". Below are the opening paragraphs. If interested you can read the rest of the essay in full. Link:   I stand by these words. I also seek a unified reasoned opposition to growth attenuation.

When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched. 
The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? 
There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal and the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation, but the end result was an illegal sterilization. 
State laws vary with regard to sterilization, and they are contentious and contradictory. Virginia, for instance, has the most protections, and extensive due process steps must be undertaken before a court may give permission for surgery on someone unable to give informed consent. What the state laws all hold in common is that the greatest controversies over sterilization pertain to people who, like Ashley, are unable to consent. 
I am not suggesting that sterilization of people with profound cognitive disabilities is wrong – in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process.” These are the words of Douglas Diekema, Ashley’s physician and the main proponent of the Ashley treatment. 
What ethics committees need to focus on are the facts, and foremost among them is that growth attenuation and the Ashley treatment involve sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history reveals the inherent dangers of overlooking the sordid experience of sterilization.


Michael Schwartz said...

Awesome blog, Bill.

First, I'm sorry about your mother's passing. It's a painful milestone, and I'm sad for you. Time soothes.

Second, thank you for illuminating the issues so well. I do want to comment on the judicial review component of your analysis. I agree, constitutional and statutory requirements call for a judge to find the facts and rule on the law. But a strong part of me resists the idea that only judges are able to resolve whatever issue's in contention. Why is the judgment of a lawyer on the bench valued more than the judgment of a poet or an artist or a working class bartender? I'm all for judicial review if who decides is broadened to include all kinds of people from all walks of life.

Why not have a judge flanked by citizen judges?


Dawn S said...


Sorry for your loss. I lost my mother 5 years ago, and all I can say is that I hope the pain and loss eases with time, and that your memories bring you some comfort.

In an ideal world, people would NOT hold ableist ideas and would value the lives and experiences of those with disabilities, even the most severely disabled. People would not fear disability, and support systems would be in place for those with disabilities and their families. The problem is, we DON'T live in that ideal world. If you've read some of Bill's earlier posts, or posts on other disability blogs, you will see that the lives of the disabled and their very personhood are constantly endangered and under attack. A group of average citizens would most likely side with the parents who wanted the "Ashley Treatment," because they are surrounded by an ableist culture which they don't even recognize. I don't want my rights to bodily autonomy subject to a panel of the non-disabled, and I don't think a disabled child's bodily autonomy should be either. I'm not entirely confident that judicial review will safeguard the rights of a disabled child, but right now, that is probably the best option. A good judge, hopefully, will look closely at the law and require a very high threshold for allowing the sterilization of a disabled child. Considering the history of eugenics and forced sterilization of people with disabilities in this country, that threshold needs to be VERY high.