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Tuesday, October 6, 2009

The Ashley Treatment Yet Again

Readers that have followed this blog for a while know that I continue to keep up to date on the Ashley Treatment. I read as much as I can and try to keep abreast of any new developments. I do this because I remain deeply troubled by the larger implications of the Ashley Treatment, now referred to as growth attenuation by doctors. The change from the simple and easy to google Ashley Treatment to growth attenuation is not a matter of semantics. To me, this is a way for those that have relentlessly pushed this so-called treatment as a viable option to avoid publicity. Frankly, given the hysterical reaction by the mainstream media to the Ashley Treatment I cannot blame them too much. Nothing good came from the media's pack mentality when the story broke in 2007. The doctors that advocated for the Ashley Treatment came across as arrogant and stuck their proverbial foot in their mouths multiple times. Disability activists were unable to articulate why the Ashley Treatment was so dangerous and were quickly type cast as stereotypically angry. Utterly lost in the furor was any nuanced discussion. Sadly, not much has changed and I remain distressed because I have just finished reading an article scheduled to appear in the American Journal of Bioethics entitled "Ashley Revisited: A Response to Critics" by Douglas Diekema and Norman Fost.

Let me be clear: the essay by Diekema and Fost is dreadful--unworthy of publication in any respected academic journal. I have submitted an abstract for an Open Peer Commentary in AJOB that is ever so polite. I gritted my teeth when submitting the abstract but doubt I will be asked to submit a commentary between 500 and 1500 words. My words here will not be nice or polite. For I know the pesky words of this and any other bad cripple are surely unwanted. The supposed aim of Diekema and Fost was to catalogue critical commentary "for the purpose of evaluating them. In doing so, we hope to facilitate a substantive discussion on the issues raised by the Ashley case that goes beyond assertions, over simplifications, opinion and emotion." Diekema and Fost identify 25 objections and break them up into different groups. This sounds great but the results are less than satisfactory to say the least. The authors write like petulant children angry with their parents for sending them to bed without dessert. How dare people object to the Ashley Treatment! We listened to the pleas emanating from the lips of Ashley's loving parents and devised a treatment for her benefit. No critics have formulated an argument that will deter us from helping Ashley and other children like her. This intervention must proceed because we know this is the one and only answer. This sort of knowledge, so certain, so sure, is not possible and if assumed to be true down rights dangerous. If you doubt me think Eugenics in this country, an approach approved by none other than the Supreme Court.

I find the authors obvious outrage and approach to critics ironic in that they have assembled many different phrases from a host of publications that are devoid of substance. Any and all criticism is dismissed and is based on an emotional argument, rhetoric, distortion, confusion, or politics. Take your pick critics are wrong, wrong, wrong. This is not scholarship but rather an effort to silence the overwhelming number of people inside and outside of medicine that object to the Ashley Treatment. To accomplish this the authors have assembled a long list of objections that appear to be power point driven or a collection of notes. Slide one, objection one reduced to a single line. Four subsequent points are made in less than a page. If a graduate student submitted this sort of paper to me I would give it a failing grade or tell him/her to write a real paper.

Let me provide one specific example of where the authors went terribly wrong and are misleading. Before I do this I want to note that this example does not concern the authors dismissal of my article published in Counter Punch or the way they reduced what I argued to a single phrase. Under "Objection 19" the authors list "Disability rights activists disagree" with the interventions in the Ashley Case. They authors identify four flaws made by disability activists and dismiss any notion the Ashley Treatment as morally wrong. The authors think disability activists are driven by an ideological argument and that advocacy groups do not in any way represent the parents or best interests of Ashley. Moreover, such argument are made by people with physical or moderate cognitive disabilities and are totally different from Ashley. For some this may pass as reasoned analysis but scratch the surface and profound flaws emerge. The authors write "several disability rights groups" opposed the Ashley Treatment and list five examples. A quick look on line reveals that more than "several" groups opposed the Ashley Treatment. I quickly came up with a list of over 150 disability groups that opposed the Ashley Treatment. This list includes at least one group from every state in America, every Canadian province, and countries such as England, New Zealand, Austria, Australia, Belgium, China, Korea, Norway, Poland and the list goes on and on. Surely one of these groups not to mention the hundreds of people that wrote articles, blogs, and commentaries that were published from a "disability rights" perspective made one or two good points. In short, a disability perspective is dismissed out of hand and the bibliography contains a dearth of source material from such a viewpoint. This is not just faulty reasoning but terrible and misleading scholarship.

What I find most troubling about the article by Diekema and Fost is their arrogance. The paper in question may state they seek to engage the critics of the Ashley Treatment but reality as they present it is something entirely different. There is no willingness to acknowledge much less negotiate differences of opinion. The Ashley Treatment is a viable treatment option. No argument presented can sway the authors from their beliefs. The single minded determination they display is, I hope, out of the norm. It certainly does not reflect my experience with the medical establishment. I have found most doctors that propose controversial treatment options to be critically attuned to any and all objections. And this what strikes me as so unusual about the Ashley Treatment. Diekema and Fost are not willing to listen to any reasoned objection regardless of where it comes from. They are right and all critics are wrong. Life is not that absolute and certainly no medical treatment as controversial as the Ashley Treatment lends itself to a black and white view of the world.

Monday, October 5, 2009

People with a Disability as Tragic Victim

Over the weekend, October 4, 2009 to be precise, the New York Times had a long article in the health section about the safety of chop meat and by extension hamburgers. The story, "Trail of E. Coli Shows Flaws in Inspection of Ground Beef" by Michael Moss discussed what many already know: ground meat safety is no sure thing. E. Coli outbreaks occur with regularity (16 in the last three years) and what we know as ground beef is not simply chunks of meat run through a grinder. I for one do not eat hamburgers and only use ground beef when it is cooked for extended periods of time (think tomato sauce or chili). What was of interest to me about the story regarding meat safety was the picture and nine minute video that featured Stephanie Smith, a 22 year old dance instructor. In 2007 Ms. Smith ate a hamburger her mother cooked and got a severe form of E. Coli. Ms. Smith was in a coma for weeks and almost died. The NYT dramatizes Ms. Smith's experience and uses her as a worst case scenario. While the text is bad and filled with lines such as "The affliction had ravaged her nervous system and left her paralyzed", the accompanying video is far worse. The video, provocatively titled, "The Burger that Shattered Her Life", makes it clear life with a disability is the worst possible fate. People must not only fear hamburgers but fear disability even more. Of the eleven people tied to the E. Coli outbreak Ms. Smith was the most seriously affected.

The story of Ms. Smith's hamburger is used by the NYT to sensationalize the risks associated with eating ground beef. The video in question is offensive. I was stunned when I watched it over coffee Saturday morning and have waited two days before writing a word because I was so outraged. The video begins with melodramatic music and Ms. Smith speaking. The voice over states she ate a home cooked burger and ten days later was in the hospital. She "emerged nine weeks later paralyzed and brain damaged". With soaring music, images of a dancer and Ms. Smith at the super market the message sent is unmistakable: poor Ms. Smith, her life is ruined by eating a hamburger. Sitting in a wheelchair she is depicted as an object of pity. The photos of her are shot from a low angle and depict her in a grocery aisle and at the check out center with only her head visible. The imagery is purposeful and intended to dehumanize. With this introduction over, most of the video focus on the lack of meat safety and Ms. Smith is used as a bookend for the video (she appears at the beginning and end of the video). When it is obvious the bad guys are private meat companies such as the giant corporate entity known as Cargill that is tied to the out break of E. Coli that affected Ms. Smith she reappears at the end of the video. This last part is what sent me over the edge and is in my estimation grossly biased and beneath the standards of accepted journalism. Just as the voice over ends by blasting Cargill Ms. Smith appears again as she slowly gets out of bed into a wheelchair. The image is meant to prompt an emotional reaction--pity. Pity this poor vibrant young woman that did nothing wrong: she cannot walk, is brain damaged and struggles to get out of bed. By extension the viewer must assume we should pity all those that use a wheelchair and have any sort of disability. Worse yet, is the way Ms. Smith is exploited for she reinforces negative conceptions of disability. She is filmed sitting in her wheelchair tearfully expressing herself: "I have to work at it, get somewhere. I know I will be back to me. I know I will walk again. I know I will dance. I know I will not be walking with a walker. I will be dancing". Oh, please spare me the melodrama! Why is Ms. Smith so miserable and unwilling to accept her life as it currently is? This is as simple to answer as it is complex. Society thinks less of Ms. Smith and has placed social obstacles on top of her disability. Obstacles such as the NYT video in which she is used as an object of pity. When she is finished speaking the voice over cuts in and states "She will most likely spend the rest of her life in a wheelchair according to her doctors". What the voice over is really saying is that Ms. Smith's life is ruined. Using a wheelchair is a fate worse than death. The video cuts back to Ms. Smith in tears. She states "I honest to God think they should be in jail". Pause while she composes herself. "So I hate them and I don't know how they can sleep at night. I ask myself every day, Why me? and Why from a hamburger? This is so unfair". More tears flow as the video ends.

I am outraged. What other person would be depicted in such a manner? Why, no one of course except a person with a disability. Like it or not I am still thought to be a second class citizens by many people including those at the NYT. There is a word for this--ableism. Yet when I use this word no one knows what it means. Most people have an idea of what Jim Crow Laws were thanks to the public school system and the civil rights movement. However, ableism is unknown in spite of the fact the ADA is almost 20 years old. Few people outside the disability community appreciate how damaging and dehumanizing videos such as the one discussed are. People just don't get it. Instead of being outraged I am too often thought to be over sensitive or politically correct. As Mary Johnson wrote in Make Them Go Away just because no one is out to get the handicapped does not make the bigotry we experience acceptable. I have no doubt the NYT did not mean to insult people with a disability. But that is exactly what they have done. Moreover, they have reinforced negatives stereotypes associated with being disabled that are as wrong as they are old. Thus when I go to the supermarket the person that read and viewed the story about Ms. Smith will have learned something: the safety of ground beef is questionable and my life and the life of all those who use a wheelchair is a quasi tragedy. I am not a sentient being but an object of pity. I am miserable and wonder every day why me, oh why oh why must I use my wheelchair. People do not see me for what I am, a human being with a life as rich and rewarding as any other person that gets through the day on two feet.