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Sunday, Nov 8, 2009
Ben Sen (and others stating that we shouldn't criticize this family's 'private decision'): I guess I probably have a different perspective from yours. My foster daughter's birth parents had her imprisoned in a mental hospital and drugged into a semi-comatose state for almost a year for the crime of complaining about her father's sexual abuse of her. There are many, many parents who do not act with the best interests of their children in mind, and at least a few hospitals who are willing to act against the interests of a child if the parents are willing to pay. It can't simply be assumed that the parents are the best people to make decisions about a child and that no one outside the family has the right to ask questions.
When parents ask for treatment which has previously been considered beyond the ethical pale, it's everyone's business. This is new territory. If it's suddenly okay to perform medically unnecessary procedures on people who are unable to speak up for themselves, it affects everyone.
What I find troubling is that once we start down the slippery slope of surgery to keep a severely disabled person small and portable for the convenience of others, even family, there is no natural stopping point.
If the person is never going to crawl or walk, what need does she have for arms or legs? These unnecessary appendages could be amputated now, while she or he is young and can bounce back more easily from the surgery. Think how much lighter and more portable the "Pillow Angel" would be as a simple "head and torso" unit. Think how much less she will weigh. Changing diapers will be easier and more convenient.
What about pulling all her teeth to make dental care a thing of the past? Think of all the brushing and flossing, fillings, and so on that can be avoided?
Where do you stop once you start body modification for the convenience of the caregivers?
I think the circumcision thread was last week.
...to have read such a truly intelligent & careful look at the Ashley treatment. When I read the headline, I was filled with trepidation. I've obsessed over close to a dozen articles about this (and posted simmering comments on at least two)-- however, not only did this piece echo many of my thoughts, it also raised a stirring & well-grounded challenge to consider nuances I previously hadn't.
Ashley could not ask for a better journalist to capture this issue. Thank you, Rebecca.
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Debating the concept of the "personhood" of anyone with the mind of a 3-month-old (not 3 years old, as some letterwriters have said), is a luxury of ivory tower dwellers, people who don't have to do the dirty work. It is said that nothing is impossible for the man who doesn't have to do it himself, and this sad situation is the perfect example.
It is disturbing, too, that so much emphasis is placed on the supposed cruelty of denying this person her sexual feelings. Much of what contributes to sexual feelings, such as soft touches, a feeling of being loved, even pleasant auditory and olfactory stimuli, can still be experienced. If she never climaxes, well, she's no worse off than most married women.
I hope that those who deplore the Ethics Committee's decision have the courage to vote for those who would put social needs over business needs in the next election.
But I keep coming back to her personhood. Yes--she cannot speak for herself; she's not mentally advanced enough to be an advocate for her own health. But what of her individual humanity? If she was suddenly granted full, 'normal' intelligence--what would she think of the fact that a team of doctors (and her parents) had physically altered her, out of convenience?
If? Yeah, she'd probably be pissed. Just as "If" Terry Shaivo was suddenly cured, she'd be unhappy about being allowed to die as well. If, if, if. Unfortunately, all available science (and we're well beyond 100 year old guesswork at this point) indicates that there is no "if" to come.
"If" the boulder that crushed Aron Ralston's arm could be magically un-stuck, what would he think about the fact that he cut it off? Its about as likely a scenario. Unfortunately, this is the real world, and we can't expect people to live as if something magical may happen when all - all indications are that it won't. Its not as if anyone is arguing that Ashley will start mentally developing next week.
I don't see why this is even a controversy. Obviously, OBVIOUSLY, being held and carried around by her parents is a big part of a three-month-old's quality of life. Can anyone conceivably argue that someone with the mind o a three-month-old would be happier being pushed around in the vinyl-and-steel embrace of a wheelchair that she is unable to propel herself than being carried by her parents?
And what is this talk about sex and eugenics? Eugenics? As if a three-month-old could ever give consent to sex. How are the reproductive rights of someone with the mind of a three-month-old even an issue? There are only two ways this child could reproduce: Artificial insemination and rape.
The fact that Ashley's treatment will make things easier for her parents is utterly beside the point. The treatment makes Ashley's life better.
There is no way to clearly judge the ethics of this case without first putting your sympathy for these partents aside. It is true, as Clarren points out in closing, “when the media moves on and ethicists switch topics to debate on their listservs, when Ashley leaves the hospital and her score of doctors, it is her parents who are left with the enormous challenge of caring for a child who will never walk, feed herself or say anything at all.” However, her parents too and Ashley herself will not be around forever either. What will be around is the precedent this case sets and as a society, it is very much our business. Unlike many other choices that we may make freely in our lives in this country, medicine is not altogether unrestricted. It is governed by laws, licenses and the last I checked, even an oath. While the matter is no doubt personal and the details will only ever really be known and understood by the family, as an ethical matter I invite us all to leave the pity party for a moment or two. As often happens with people unaccustomed to dealing with disability in every day life, we are paralyzed by the sense of schadenfreude -- "oh those poor people," we all say. But that is beside the point. Surgery won't fix what is broken here. We want this story not to exist. It is a tragedy -- a pity. But labeling it as such does not change the reality of it. Ashley is. And taking away her breasts and her uterus won't change her brain. Her problem is not that she is a woman; her problem is not in her breasts, it‘s in her brain. The Ashley treatment is not, in fact, a treatment at all, it's a distraction. In short, I smell fear -- a fall back position that says "well, I can't possibly understand what those people must be going through, so who am I to judge?" We can't imagine what it's like to be them because we don't want to. This stance only serves to keep disability in some far off and misunderstood cave where bad things happen and we hope we'll never end up. I have yet to read much good reporting on this case because our journalists are all too afraid to write about it without adding in this obligatory, "wow, it sucks to be them." I think there were a lot of good opinions in this article, but you lost me at the last line.
Much of the initial coverage about Fort Hood turned out to be wrong. Is there anything wrong with that?
The accountability imposed by another country for the CIA's kidnapping and torture reveals much about our own.
Fox News' morning show plays to type, talking about whether Muslims in the Army should face "special debriefings"
219 Democrats and one Republican join in favor of the legislation, which passed by a narrow margin
The survivor and author is upset about comparisons some on the right are making to genocide
Salon headlines in your mailbox
