Letters to the Editor
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Extreme Makeover
I think one thing that may have driven her parents to make this request was that our culture does not function well as a community. Ever since the birth of the burbs our collective imaginations have failed to create adequate solutions to families in dire need of support. Making this disabled person surgically more convenient is a horrifying but logical result.
One parallel piece of evidence that the culture craves community but confuses it with things is the altruism-as-sensation show Extreme Makeover, Home Edition. The frantic cheers of volunteers as the recipients are given an extravagant home speaks to both that confusion and that unmet craving, I believe.
If we created a network of caring in every neighborhood so that no nuclear family had to care for a severely disabled child (or for that matter, any child or elder) either in isolation or with only institutional help, such interventions would not even be imagined.
It would still be sad and hard, that some among us are completely dependent, but it wouldn't break the back of a family or the conscience of healers. The baseline position is that there were no other options, and that is a true social failure.
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Caring for the Severely Disabled ...
is not easy in this country. It is physically and mentally demanding. I can see a parent wanting to do as much as possible for their child, but when that child turns into a full grown adult, will the parent still be able to care for them?
When brain growth is stunted to that of a three month olds, resulting in a body that reacts like that of a three month old, are we really going to force these parents to change the diapers on a 100 pound woman? And, since she cannot hold up her head or sit up straight on her own, she can't help they at all. She is basically a dead weight. Frankly, I can't imagine what it would be like to change Ashley's diapers now that she weighs 65 pounds. And, this is only one of the many tasks that go into caring for Ashley.
Now, we're not talking about someone who can eventually or even possibly live on their own with some supervision. We're talking about someone who will always respond like a three month old baby, and so, will always need round-the-clock care. And, she has parents who want the responsibility of caring for her for the rest of her life, and as they grow older, it's only going to get harder for them.
In many ways in this country, we go so overboard over individual rights that we forget about protecting and preserving families (or communities). Ashley's life is her family. These medical procedures mean her family will continue to stay together.
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Judge not...
...lest ye be judged.
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I'll Judge All Right
This is a horrendous slippery slope. I'm horrified that there is no more organized effort at medical ethics. With the treatments newly available, and the ones being developed, the question of ethics will loom larger than ever before in our history. Remember the tragedy of eugenics or lobotomy and see what science without ethical guidance can lead to.
And these people are demented. Pillow angel? Try human being.
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I agree the issues are complex
Personally, I don't think I could care for someone like that for the rest of my natural life. But isn't anyone else creeped out by the term "Pillow Angel"?
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thank you Jesus
you've said it all. How dare ANYONE judge these people, who has not been in their position of lifelong responsibility for a helpless child.
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I wonder
I wonder if the professionals that are critical of this procedure have ever spent a day, a week, or even a few hours taking care of someone so completely handicapped. It isn't a noble thing. It's just hard work. Baby are small and cute--so we endure the work and we know they will grow and not need the intense care they need when they are young. Large women with the capacity of a 3 month old--you have to change their tampons or pads. Their breast will ache and they won't understand why. Who would wish puberty on their 3 month old child?
Caring for severely disable people is ookey dirty 'real world" work.
Most doctors have never touch a bed pan, never changed a diaper for a patient (baby or adult). The critics reasoning seems theoretical and esoteric. The parents reasoning seems practical, and loving.
Okay here comes a cliche, sorry, but let them walk a mile in the parents of a grown-up sized baby for a week or so before they give their opinion.
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It's normal to be troubled...
especially by the pert little quote from the parents about Ashley not needing a uterus, because she won't bear children. Any parent asserting that they know the complete reproductive and romantic future of their child is disturbing.
Parents of disabled young people often try to deny their sexual maturation; they try to believe that someone with the mind of a child or a non-standard body would not have sexual feelings or desires. It's dangerous to propagate a treatment that would allow parents to enforce an endless childhood on disabled adults.
But Ashley doesn't have Downs Syndrome, or Autism, or anything like that. She doesn't have the muscle control to move her head; as an adult, she would have no sexual outlet, even alone, if she did formulate sexual desires. It's likely that the things that bring her most happiness in life would end as she became an adult, and more difficult to care for.
People who assert slippery slopes have no faith in brakes. It took a panel of 18 to allow this surgery; I doubt that panel would have allowed a young developmentally disabled man to be castrated so his parents wouldn't be troubled by chronic masturbation.
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Comfortable and Amused
Thank God for ethics committees in hospitals. Go to this article's link to Ashley's parents' journal. Their reasons are logical, insightful and persuasive. They will be her guardians as long as they are able, and as such they have the right to make decisions about her care. As they repeatedly state, the two biggest problems in Ashley's life that they can identify are boredom and discomfort. The procedures were meant to curb discomfort (large breasts run in the family, periods are painful, large people develop more bedsores) and allow her to be moved easily so she will be less bored and more stimulated.
Her parents are willing to try to keep her comfortable and amused for the rest of her life - surely we as a society can support whatever they need to do so.
Could the "Ashley Treatment" be misused? Yes. Thus the need for 18 people around a table for several hours making these decisions. It is not unlike the ethics of seeking plastic surgery for a child: what are the motives?