Growth Attenuation: 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.  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.

S.K.

Tragic update as of today, October 10, 2007: "Doctor at center of stunting debate kills himself"

Read also: TV Land, Down and Dirty, The Ashley Treatment: Is It Just Me?, Anne McDonald. Don't Call Her a Pillow Angel

Here is a link at NPR: Parents' Plan to Stunt Girl's Growth Sparks Debate

Comments

[Wren]

I was also disturbed by this story. On the one hand, the parents' arguments are solid; there might be less pain and misery for Ashly as she grows older, and certainly it will be easier for them to manage her.
On the other, the name "pillow angel" gave me a sick feeling in my middle. This procedure is definitely also to make life easier for the parents, both physically and emotionally. Is that wrong? I'm not sure.
What I'm sure of is that this procedure, if it's carried out, will set a very disturbing precedent in which the parents of disabled children will be allowed to alter their children -- and their children's lives -- through artificial means. That thought makes me feel sick again.
Thank you for a clear and thoughtful post. You've helped me understand how I feel about this.
It's awful.

[Cyberpunk Hero]

"What I'm sure of is that this procedure, if it's carried out, will set a very disturbing precedent in which the parents of disabled children will be allowed to alter their children -- and their children's lives -- through artificial means."

Umm. K.

I'm sorry, what part of that is bad?

[Steve]

In response to "I'm sorry, what part of that is bad?"

The procedure that was performed on Ashley was not designed to cure her. It was essentially a harmful medical procedure that no reputable physician would perform unless the patient was disabled and couldn't speak for herself.

Altering human bodies for the sake of convenience is as troubling to me as the aborting of female fetuses in countries like China.

The hormone therapy that Ashley received may well cause serious health problems. In effect, this makes the whole thing an experiment. This is a very disturbing story.

[catty]

Maybe, her parents are trying to fulfill a pedophilic fantasy, or they are trying to cover previous abuse. I heard alcoholism can cause Ashleys mental condition. So the parents are not so innocent afterall.

[Connie]

We on the planet of the blind believe that in general, people are innocent until proven guilty. We don't approve of the "Ashley Treatment", but we are not going to accuse her parents of anything other than poor judgement, based on the facts as we know them.

[Xuxan]

I prefer to think of her parents as people who came up with a really bad idea and then no one told them it wasn't. The parents didn't accomplish this alone - a team of doctors decided this was in Ashley's best interest. This is medical science gone wrong.

[ona]

Im glad all of you have a nice easy time judging this proceedure and decieding that its not acceptable for "you". What you may not have thought about is the idea that as a parent, "your" child who is 100% unable to care for herself, including being fed by a feeing tube, blind, cannot sit up, hold her head up, talk, is in diapers and has to be changed many times a day- will grow to be the size of full grown adult, have mentural periods that "you" will havre to attend to, and can kick you in the face and elswhere with the full force of a strong adult while your trying to change a fecal diaper ect.. If the parents of Ashley want to call their little girl a "pillow Angel" there is nothing wrong with that, The child most likely lays on a pllow all day and thats their nickname for her. Thats thier business. Not yours. My grand daughter is 7 years old, She is decribed above, But she is a kicker and has an active strong muscular constitution. The point is when a disabled child grows to big to be taken care of at home, by thier parents, they have to be cared for by strangers in an intitution- thats where thing go bad. No-longer is the people who love her the ones giving her her daily care. We as family all know about the abuse that goes on in institutional situations. No loving parents want to send their kid to an institution. But when your child wieghs 170 lbs and 100% disabled-mentally and Physically, you cant just toss them in the car and take them to a family function ect.. BUT, it is so good for them to be with the family, at family functions ect.
STEVE: your situation is no where near the way life is for kids like this. To compare your life to this is ignorant. And to say lets make my wife blind Yada Yada, is ludicris. That was really a bad point and had nothing to do with this situation. Be thankful you can type, be married, talk, go in the rain to a bus stop. You are self sufficent and have no business judging the people who have to and want to care for the ones who are not.
ona