DSQ > Winter/Spring 2007, Volume 27, No.1-2

Say It Ain't So <http://www.planet-of-the-blind.com>

I was relatively new to blogging when I posted the entry below in response to a news story about the parents of a severely disabled girl. The story was launched via the parents own blog, and then, in turn, the narrative about their daughter and her medical procedure entered the mainstream press. This girl's story has come to be known as "the Pillow Angel case". Here is my initial post from "Planet of the Blind" about the affair:

  1. Say it Ain't So

    I am always the last person to hear about major stories. For instance I just found out last week that "Shoeless Joe" of the Chicago White Sox may have thrown the World Series back in 1919. "Say it ain't so, Joe!"

    When my wife Connie read me the article in today's Columbus Dispatch about a disabled girl who is putatively named Ashley and who has been rendered permanently child like through a surgical procedure that is designed to keep her small as a kind of accommodation for her care giving parents I was not only shocked but I wondered how I had missed the story. There are already a number of significant posts on disability related blogs having to do with this story and I want to suggest that readers of this site explore what many disability bloggers are saying about this matter.

    I am not a medical ethicist nor am I the care giver of a profoundly disabled person who is largely immobile and who is additionally a mentally disabled person. Nevertheless after hearing this story this morning I found myself shuddering and I said to Connie: "That's just plain wrong."

    Ashley's parents argue on their blog that a medical procedure that they requested and which was in turn performed and that was designed to keep their "pillow angel" forever small was a necessary and entirely utilitarian operation. The girl's uterus was removed. Her breast buds were removed. She receives major doses of hormones, all to assure that she will not grow into adulthood. The utilitarian aspect of her parents' argument is that if Ashley were to grow into an adult she would be difficult to transport. She would be heavier in her bed. She might have worsening bed sores. If she became a grown woman her parents wouldn't be able to carry her from place to place.

    As you read the associated blogs and news stories you will see that several medical ethicists have weighed in to say that the entire procedure is troubling.

    I teach disability studies and I'm certain that we will be talking about this case in class next week.

    I wish only to say the following as a measure of my personal alarm about this story:

    My sister who is a physician took the Hippocratic Oath. I was there when she took it. A primary principle of medical ethics calls upon physicians to do no harm.

    Hormone therapy is dangerous for women and no one knows all the facts about the long term effects of hormonal treatments. There is plenty of evidence to suggest that there's the potential for harm when large doses of estrogen are administered to women.

    I will leave aside the utilitarian dimension of Ashley's parents' argument that by keeping her small they can better care for her. That position is uncontestable and consequently in rhetorical terms it's made of what the Greeks called "logos" which is to say that it sounds true. But this assertion is also tinged with what the Greeks called "pathos" which means that the argument is driven by an emotional component. Her parents call her their "pillow angel" because she's good and quiet when she's lying in her bed. The figuration in this appellation is obviously sentimental and infantilizing and the Greeks would be hip to this as a tricky emotive plea within the tenor of an argument. Pathos is always to be distrusted as Aristotle well knew.

    I simply want to add that when we do potential harm to another being we are straying from the accepted and ethical criteria of medicine. To pretend that by keeping Ashley small her parents are doing her a service is to confuse their own desire for an accommodation with the real story of Ashley's life. That's my view and I'm sticking to it.

    I am blind. My wife has fabulous eyesight. Perhaps it would be more convenient for me if Connie was blinded by a medical procedure so she could know the daily frustrations I experience around our house. Perhaps if she had to walk in the rain to get the public bus that always seems to come late, well that would be good for our relationship. And Connie would then likely have a guide dog as I do, and we'd go everywhere together.

    When we imagine that by means of surgery and drugs that we're doing a good thing by making another person's body and life fit our own convenience we are essentially confusing utility with ethics. Ashley, who cannot speak for herself has been rendered an object in this process. Those in the medical ethics and disability communities who see a connection between this procedure and eugenics are in my view not wrong. I'm very troubled by this story and I sense that my gut reaction is truly the ethical position.

  2. "Say it Ain't So So"

    If you visit my blog (www.planet-of-the-blind.com), you will see a chain of linked blogs and linked comments from readers both about my posts and about the wider circulation of Ashley's story. The controversy connected with Ashley's treatment became the subject of numerous television programs and disability bloggers were interviewed as the broadcast media sought to frame the issues surrounding the case. One very interesting dimension of this public reaction to Ashley's story is that the case has been presented and analyzed primarily through blogging. The girl's parents (who still remain anonymous) unveiled the story of their daughter's treatment via their own blog. In turn, supporters of the parents and those who oppose the treatment have used "the disability blog" as a forum. The debate has been acrimonious, discerning, poignant, alarming, and spirited in every instance.

    My wife Connie (who helps me with my blog) found that some comments that were posted to our site were offensive and together we struggled with the thorny issue of censorship. As the debate about Ashley's treatment raged in the blogosphere some people became ill tempered and began waging personal attacks. We debated whether we should remove some particularly mean spirited posts and in the end we decided that our blog would not be a forum for people to launch personal attacks against others. We reasoned that while the blog might be a public enterprise, it could also be viewed as a magazine. We are the editors and we can and should reserve the right to ask for civility on our pages. Perhaps others might have taken a different position.

    It is clear that the public's discomfort regarding this case is indeed widespread and that the views of disability rights advocates have been heard both in the world of the bloggers and in the mainstream media. I believe this is a sign of the broader avenues of discourse that the bloggers have successfully opened in contemporary culture and that the "agora" is both crowded and loud. I take this to be a good sign for democracy. The blog suggests that the interdependency of disabled identities can trouble normative assertions. In turn this means that the disability community is fully invested in telling our own stories.

Copyright (c) 2007 Stephen Kuusisto

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