Art Caplan Gets It Right About Ashley
I don't usually agree with Art Caplan, and he doesn't usually agree with me. But he has it right in this piece that imposing a hysterectomy, mastectomy, and hormonal treatments on a disabled girl to make sure she remained small--while certainly well motivated--went too far. He is also right that people in such circumstances deserve a higher level of services than are currently available.
Still, had Ashley's parents decided to pull her feeding tube because they thought life as a disabled girl involved too much suffering, would Art still be in opposition to the parental will? Or would it be a case of keeping her small, no, dehydrate her to death, yes? I bring this up because he was often bitter and caustic in his support of Michael Schiavo's successful bid to have Terri Schiavo dehydrated to death. Here is one of his more measured pieces in that regard.
posted by Wesley J. Smith @ 7:49 AM
8 Comments
8 Comments:
It wasn't sexual mutiliation, at least, not sexually motiviated. I am unequivocal, that I think it was wrong. But the parents are not villains, at least not based on the information we have to date. No need to be bombastic.
Yes, I think Wesley's been very definite about this. And not everybody agrees with him, either, more's the pity.
I think you're right, Wesley, that many people would support killing by withholding tube feeding but not what was done here. This is strange to me, but it fits with the whole fascination with death (here the child isn't being killed but given a life in a deliberately damaged body, so some people would feel this is worse), the fact that the mutilation here had vaguely sexual overtones (though not, as you say, being really sexual mutilation), and people's irrational animadversion to feeding tubes, regarded as "unnatural" and "medical treatment."
Besides, as I will probably note further, this is right up the transhumanists' alley who think that parents should be able to mold their progeny like a clay pot, to serve THEIR needs and wants. And who are THEY to JUDGE that this isn't an improvement? After all, we should all be made smaller. We would use less of the world's resources and cause less global warming.
The mastectomy bothers me, though I would like to hear the doctor's explanation.
As I said in another post, it is not unusual for parents to agree to sterilization of profoundly or severly retarded offspring. It would have been much more dangerous for someone like my sister to go through pregnancy than to undergo a sterilization process.
As for "enhancement of human abilities", perhaps the parents felt that institutionalizing their daughter might not provide such enhancement, given her particular situation.
I really think that there may be more to this story than meets the eye.
Ashley's parents have set up a web site explaining their actions at length here:
http://ashleytreatment.spaces.live.com/blog/
Whether you agree with their decision or not, it adds some important details to the picture.
"I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one."
Here is more food for thought. When my sister was small, she was cute as a button and elicited affection from everyone--including strangers. When she became large and her appearance became "strange", she elicited disgust and horror from the ignorant.
I have to laugh about Kaplan's suggestion that we do more about Home Health assistance. We have great trouble staffing nursing homes and the group homes and ICF-MR's that I represent. It takes a very special kind of individual to care for a large, profoudly retarded person who is essentially bed-ridden, for any period of time. Those individuals are few and far between.
But a cute little girl? That's a different story.
Perhaps I am treading dangerously into the territory of the transhumanist. The only distinction I can draw is that we are speaking about an individual who will be wholly dependent on the kindness of others for the rest of her life.
I see the parents' point in all this. As to whether it was ethical? I'm still mulling that over. It's rather difficult given my life's experiences.
We all see the parents' perspective. The doctors should have said no. As for sterilization, there are a lot less invasive ways than hysterectomy.
I find it interesting that this story, which has little direct impact on people's lives because it is so unusual, is making such a big splash. My first instinct was to not comment.
I am mulling over the reasons why. But I hope part of the explanation comes from a depth of care for a helpless, profoundly disabled girl. That would be a fine reflection of human exceptionalism.
Look, if the child isn't institutionalized and put in an environment where she cannot be properly watched, she isn't going to get pregnant. I can imagine situations where that might be a problem, but this isn't one.
Once and for all, the things done to this child were by the parents' own admission to *keep her small.* It wasn't a matter of trying to avoid cancer, or pregnancy, or curb otherwise unmanageable aggressive behavior, or anything else of the kind. The mutilation of the various sexual organs and the removal of some was done because these organs also are related to growth, and the plan is that cutting them off will stunt growth. Her growth was deliberately stunted by the severe and invasive mutilation of her body and the administration of large doses of hormones. I know it was for a lofty motive, but I don't believe that makes it right.
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