Letters to the Editor
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The biggest enemy is physics
I know I have trouble lifting my grade-school kids, who are 60 and 70 pounds. When I imagine doing that, many times per day, year after year on into my "Golden Years," I can understand the "Ashley Treatment."
The most common injury for nurses is back injuries from moving disabled patients in/out of bed, into baths, etc.
I've read the interviews, I've read the controversy. And while I don't have a disabled child, I think they did what was right for their family. If Ashley is small, they can take her out easily, get her in and out of the car, include her in family life. I think until one has walked a mile in the proverbial shoes, one can't comment.
I'm blessed that my children are healthy, can walk, and will some day grow up and move out. These parents will be caregivers until they die. I can't judge them.
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Not going that way .. yet.
Medical technology has evolved to keep these children alive -- now will it evolve to create artificially permanent children?
It's not clear that this is quite the question raised by the "Ashley" case. The girl in question has, if reports are accurate, basically no brain. Like, most of it is literally not there. In such a case, the idea of one's internal life maturing, even in a dysfunctional or incomplete way, are pretty much moot. Even the ability to learn, on a basic level, is questionable.
In a society obsessed with youth and infantalization, and in the throes of simultaneous urges toward repression of adolescent sexuality and sexualization of pre-adolescence, this girl's case can easily be seen as an example of everything that's gone crazy.
And if she were to become a precedent for the expansion of medical procedures to enable parental fetish, then there would be reason to that. But as it is it's not clear that it's working that way.
At least, not yet.
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Thank you
You write:
I was ready saddle up my high horse, but judging from a distance is so dang easy.
Great point, always worth remembering.
Until you have been a parent to a disabled child you cannot know what day-to-day life is like, what options the parents have tried, or what the relevant research says.
One thing a parent of a disabled child can expect is to receive lots of well-meaning advice and criticism from those who don't know, but think their experience with their "normal" child gives them the knowledge they need to dispense advice.
We don't know what those parents have gone through. It certainly appears they have their daughter's best interests at heart. Beyond that, we should not offer judgment.
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I was horrified until I read "mind of a three-month-old"
Now I'm not so sure I can judge. My kids are healthy too, but I have a close friend whose oldest child, now 17, has the mind of a toddler. I don't think he ever considered (or even knew of) surgeries and therapies to impede growth, but considering some of the challenges he and his wife are facing now, I wonder if such a treatment wouldn't have been a wise choice for his child.
I will say this. I find the term "pillow angel" almost more disturbing than the treatments. Dehumanizing and deifying in one fell swoop.
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Walk a mile in their shoes
I had an instinctive reaction against what they did, until I read that they were afraid they wouldn't be able to carry her if she got much bigger. What happens if her parents can't take care of her? She's going to have to go into an institution, probably, and how is that a benefit to her? Her parents seem like loving people who have struggled to come to this decision.
And frankly, anyone who has sex with her would be committing molestation and rape, so I don't see how letting her become sexually mature is going to be a source of pleasure to her.
We should be awed at the ability of parents to love this big, and let them figure out for their family what is best. Sure, a judge should make sure that it really is in the child's best interest, but if it keeps the child at home with loving parents, that's good.
I am always humbled by the example of parents who give so unstintingly to children who will not grow up and go away. Whatever help society can offer them is what we ought to give.
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The parents should be able to euthanize this person-shaped organism
This is not a human. Humans are defined by their intelligence. This is a person-shaped organism (PSO). The parents may do as they will with the PSO, including terminating the existence of the PSO.
What will happen to the PSO when the parents die? Will a lucky sibling get to take care of the PSO? Or will the state be allowed to care for the PSO until the PSO expired?
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Hmmm.
I won't fault these people for keeping their daugther alive or taking steps to minimize her suffering. At the same time, I agree with a previous writer: in case like this, parents should be allowed, if they choose, to euthanize the infant if the infant suffers severe mental or physical defects. The choice would be the parents, and what they deem is best for their child.
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At my church
a nice man, 10 years older than I (I am 55), occasionally brings his adult child to church. The child has Down's, a moderate to severe level. I have never heard the child (who is about 35) utter a single word. The child can focus, and is well-behaved. Yet, my friend will be dead well before his child dies.
Who will care for his child after he and his wife have died? At the end of the life of this child, what purpose will the child have served in this world? While I am not a Nazi, I am a utilitarian about children with severe disabilities. I would euthanize far more of them.
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PSOs
"Humans are defined by their intelligence."
Please, give me an I.Q. cutoff that defines someone as human. Most of us would call a person with an I.Q. of 80 human; in clinical terms, that's mildly-moderately retarded. Koko the gorilla and Alex the African grey parrot were estimated to have I.Q.s in that range.
Can a human cease to be a human if their intelligence falls below a certain line? Using your logic that intelligence makes a person human, my grandmother was a highly intelligent, outspoken human for the first 75 or so years of her life. She gave birth to four decidedly human daughters, who had ten decidedly human children of their own, who have had fifteen decidedly human children of THEIR own so far. But...thanks to Alzheimer's, in the last seven years of her life, Grandma lived a life that very similarly resembled Ashley's. At what point did she cease to be a human?