It took me quite awhile to make up my mind about this story. Parents of a disabled nine-year old decided to have surgery and hormone treatments done on their child — now she will not become fertile, grow taller or develop breasts. I’m going to tentatively defend the parents.
From the story:
“She cannot sit up, walk or talk, is fed by tube, and, as her parents put it, ’stays right where we place her - usually on a pillow.’”
There are some risks with the surgery, so I think there is some burden on the parents to demonstrate the procedure is necessary in some way. They say she will be smaller and easier to take along on trips, etc. The lack of breasts and a menstrual cycle will relieve discomfort. I do think it’s important to defer to them in many ways, as few of us realize the responsibility and reality a developmentally disabled child would pose.
The child is a human life, with autonomy and all that goes along with it. Since she cannot communicate, her parents must do what’s in her best interest. Again, there are certain limits here — they cannot abuse her or kill her.
So the question is, what harm does the operation do? What would fertility, more height, etc., mean to someone who cannot walk or talk? The biggest objection seems to be from people who compare these procedures to the same procedures performed on a normal child.
My argument here is that, from the child’s perspective, the only meaningful change is the removal of excess weight. As far as this specific child is concerned, it is basically the same as lyposuction. So the question is, if extra weight poses no real health risk, and a child cannot communicate whether she wants it removed, can parents have it taken off? Bear in mind the parents have to lift her wherever she goes, and that a heavier child will have lower mobility.
Thought of in this way, the issue no longer “smacks of eugenics,” as one critic quoted in the article exclaims. The tradeoff is now between a risky surgery and a lifetime of difficult lifts and, occasionally, a child left in others’ care while the parents travel. Since the risks are (presumably) minor, I would have to say the decision should be left to the parents.
This quote, however, does make me a little uncomfortable:
“‘It was easy…We clearly saw the benefits to Ashley’s quality of life. We have also been criticised for harming Ashley’s dignity. But for us, what would be grotesque would be to allow a fully formed woman to grow up, lying helplessly and with the mentality of a three-month-old.”
The parents have a Web site here.
Robert VerBruggen blogs at http://www.therationale.com and http://robertsrationale.blogspot.com.














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