Site Presented By
Sunday, Nov 8, 2009
I am the mother of a four year old son, that could be Ashley. He will never walk, he will never talk, he will never hold a job, vote or go to college. My son is finally through most of the acute medical issues that kept him in the hospital for months. His size and caring for him are now the biggest issues facing my husband and me. He is three and a half feet tall and around 45 lbs. My husband does most of the lifting because I have thrown my back out 5 times. We are right on the verge of having to make major changes for him and his mobility. We love our son so much, but all of his doctors have told us that at some point he will simply be too big for us to care for at home. The thought of that breaks my heart. When I first read about this case (and that was the original AP story when the article was published), I broke out into tears. My first thought was "Oh, God, that is Auschwitz stuff they are doing to that poor girl". As the days have progressed though, I have debated this with myself incessantly. Could I do that to my son? What if it meant he could stay at home with us? I still don't have an answer, but I doubt we would do it. My son has enough surgeries and medical problems without layering any others on. At the end of the day, I love my son wtih all my heart. I will work my hardest to the best that we can for him and reluctantly let tomorrow take care of itself.
Why is it that out society allows such nonsense. This procedure insults brave and valiant parents who care for disabled children every day. If you want something that will interact with you and stay on a pillow where you put it, get and train a dog!!! Talk about a slippery slope... No one told these parents that dealing with a disabled child was going to be easy, but it should be their responsibility to care for her in the way most appropriate for her capabilities, not the parents'. Ashley is a person with feelings and has the right to have aspirations and desires just like everyone else.
Now that this procedure is done, does Ashley even fit the description of a boy or girl? Or is she just something her parents can carry around and hold for their own comfort?
I also find it fascinating that parts of the medical community are against stem cell research that may alleviate or even possibly eliminate these types of ethical issues, but they are willing to medically/legally rape a girl of the very body elements that make her female. RIDICULOUS!!!
Two overriding themes I have noted to be underrepresented: 1) quality of life, 2) inevitability (and sanctity) of death.
1) Although "Ashley's Treatment" can be seen as contributing to Ashley's quality of life, just what is that quality? This is a very difficult question to answer for her or any participant of the human endeavor. Imagine one's life dependent on others to sustain and reposition them; no personal control is apparant, no viable ability to interact with one's environment. In Ashley's case, whose quality of life is really in question? The parents have made a decision to have Ashley undergo these procedures in order to more effectively care for her. So the decision was (and is in most cases of life/cognitive situations) is quantity of life over quality. Which brings us front and center to the second theme:
2) Sanctity of death. We all give lip service to dying with dignity, but ultimately our society avoids death at perpetually all costs. We deny it, demonize it, and outlaw it. We believe that to embrace euthanasia would be a bane on our very existence; the ultimate act of evil. I have taken care of many individuals who never had or can no longer interact with their external environment and are completely dependent on others to sustain them. Eventually, some disease process inevitably claims their life (usually pneumonia or sepsis).
Is losing a loved one painful? Undoubtedly. But we are not doing ourselves or our human brethren any favors by demonizing death, which we all eventually experience. To prolong the inevitable in cases whereby the individual has no capacity to interact with their environment, consequently relegating all decision making capacity to others offer no assurance that those making the decisions are doing so in the invalid's best interests. Dying from an infection is not pretty, painless, or dignified. Our collective inability to allow death to ensue without heroic measures to prolong it is a result for our ultimate fear of the unknown. The irony is such that we wouldn't maintain our pet in such a condition (artificially feed them, diaper them, or reposition them), and yet we insist we do with our fellow man.
Even though the parents have been criticized by some regarding their decisions to inhibit Ashley's development, how much more would they have been ostracized by our society had they decided to quicken her death painlessly and with dignity?
This case ultimately raises those questions. Are we as a technologically, 'intellectually' advanced society able and willing to address that issue? Until then, we will continue to embrace 'life' at all cost and suffering to appease our own fear of the ultimate stage of life: death.
My brother in law (weight over 200 lbs) is a quad. My sister, who is not a big woman, cares for him at home without help and always has. One of my close friends has a severely disabled son with cerebral palsy. He's 16 now, man-sized, and completely unable to lift himself or attend to his needs. She manages, because she has to. I'm not buying that Ashley's two parents would no longer have been able to care for her at home if she had been allowed to mature into a 125 lb woman. Also, they have no shortage of outside help; in fact Ashley attends school every day, with "activities customized for her," whatever the hell that's supposed to mean when talking about someone with the development level of a 3 month old.
I'm just going to give a few quotes from the parents' blog that bothered me.
The decision to move forward with the “Ashley Treatment” was not a difficult one for us as many seem to think.
Holy shit. Massive body modification of your daughter was not a difficult decision? Why NOT? Shouldn't major surgery for any child be something you have to think seriously about? The lack of humility in this statement disturbs me.
The “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels”
Here's the "pillow angels" bit, in all its glory. Note that the parents are promoting this treatment for other children. Note also that "pillow angel" is NOT their private nickname for Ashley; it's a category, not a nickname. All children like Ashley are "pillow angels." I don't care what nickname they give their own child; "Here you go, little pillow angel," is not what I would say to my own kid in this situation, but she's not my kid. Deciding that other disabled children with severe motility problems are now classified as "pillow angels" is icky.
Furthermore, given Ashley’s mental age a nine and a half year old body is more appropriate and more dignified than a fully grown female body.
This is the clincher, for me. Who says that a body the parents have altered is "more appropriate" than the body she would develop naturally? Who says a nine and a half year old with the brain of a 3 month old is more dignified than a mature woman with the body of a 3 month old? That must mean, by extension, that a mature woman with the body of a 3 month old is LESS dignified. And I say, cordially, screw that. There's no lack of dignity in being disabled. Those who view Ashley may feel embarrassed by or for her; Ashley herself cannot - and need not - feel embarrassed.
In some ways this is a non-issue. Ashley's life at its potential best and Ashley's life at its possible worst are not very far apart - she is incapable of recognizing her parents, so it matters little whether she is cared for at home. She is spared possible pain she is not capable of understanding (menstrual cramps, bedsores) and suffers other pain she is not capable of understanding (nausea and illness from high doses of hormones, surgery pain).
In other ways it's a very important issue. This slippery slope is a real slope, with lots of people at the top of the hill looking down.
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
