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. Alas, a Blog is a good place to start. And Blue, of The Gimp Parade had this to say in her post Frozen Girl. I'm under the impression she'll write more when she's feeling better. Feel better Blue. (Here is another post, 'here" being the blog of Wheelchair Dancer. She also had this to say. And this.)
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 they call the "Ashley Treatment" 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 received 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.
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.
Tragic update as of today, October 10, 2007: "Doctor at center of stunting debate kills himself"
Here is a link at NPR: Parents' Plan to Stunt Girl's Growth Sparks Debate