Interesting story out of Seattle: The parents of a mentally-disabled girl who cannot speak, move or feed herself have opted to begin treatments that will stunt her growth and leave her child-sized for the rest of her life.I came across this story through my friend Alejandra and what struck me about it is the question that it raises about what I would do if I had to care for a disabled child whose mental development will not advance beyond infancy.
First, I didn't know such a procedure was possible, but basically, Ashley will remain the size of a six-year-old for the rest of her life. This, her parents say on their blog, is intended to improve Ashley's quality of life.
First, I didn't know such a procedure was possible, but basically, Ashley will remain the size of a six-year-old for the rest of her life. This, her parents say on their blog, is intended to improve Ashley's quality of life.
In reading through Ashley's parents' blog, where they refer to children with their daughter's disease (Static Encephalopathy or permanent or unchanging brain damage) as "pillow angels," I get the impression that they have come to a decision that takes the best interest of their daughter and their family into consideration. They're not planning on disposing of their child, instead they're looking for the best way to keep their daughter under their care and make sure she has the best quality of life possible.
Of course, some media, like the Los Angeles Times (who broke the story) and the BBC have taken this story as an opportunity to discuss euthanasia and other medical ethics issues. The Fox News Channel, pandering to simpler minds, posted a piece called "Forever Young" on their site and featured a picture of Peter Pan with the opening: "Ashley X is not a character from Peter Pan, but like the Lost Boys, she too will never grow up."
Clearly, this issue defies catchy headlines and should really provoke questions about how we define humanity and quality of life -- for both the infirm and those who care for them. It's one thing to talk about the terminally-ill and permanently-disabled in the context of sympathy -- but where does that get us in the day-to-day grind of caregiving?
From what I understand about the approach taken by Ashely X's parents is that this is the best way for them to keep their daughter in their family and allow her to live her best life. In her childlike state, Ashley can experience the world around her without the added stress of hormonal changes and other issues that surround the transition into adulthood. And yes, this arrangement is of benefit to the family, who wants to care for their daughter as best they can. It's one thing to move a six year old around, but what about an immobile adult?
What do you think of this?
8 comments:
While I personally support the parents decision it is basically none of your or my business. It's a family decision made in conjunction with their doctors. Leave them alone. No one else has the right to judge this family.
Anonymous,
I think we need to consider that this is a very serious, unprecedented procedure that is being done with the best intentions. However, there are no qualifications for being a parent and often parents can make very bad decisions that put human being in jeapordy -- especially girls like these who are incapable of making decisions on their own. Although I don't think these people should be "judged" per se, I think the topic is worthy of consideration as it will set a precedent that can lead to more abusive and destructive scenarios.
After the Schiavo kerfuffle, I thought it was liberal policy to support the snuffing of anybody incapable of voting democrat. Although, that would obviously include many ass hats in Palm Beach County.
As far as Anonymous' attempt to shut down discussion, hell yeah. People DO have a right.
With "rights" come responsibilities. Is it responsible to be specific in this particular case? If we don't know the struggle the parents had (or didn't have), is it responsible for us to discuss the decision?
This is an unhappy situation. Do we have the right to make it worse for the parents involved?
Rushing to judgement too often results in flawed judgement.
Yeah, but you can't make an asinine blanket statement "You have no right to judge" like Maureen Dowd.
We do and we will.
On a completely different note I can't access my blogger account. Blogger isn't using beta anymore and is on some power trip for some new service that won't let me sign using my g-mail account. When I enter my g-mail address and password I just get a blank box.
I really, really hate Blogger.
You get what you pay for.
Maybe they've fixed the problem since you posted this. I just signed in and went to My Account without a problem.
Mysterious are the ways of the internet.
Alas.
I've had no problem signing into Blogger. Maybe it was just a hiccup of some sort.
Post a Comment