Ashley is a 9-year-old girl who has static encephalopathy, a severe brain impairment. She cannot walk or talk. She cannot keep her head up, roll over or sit up by herself. She is fed with a tube. Her parents call her "Pillow Angel" because she stays right where they place her, usually on a pillow.
Her parents say they feared that their angel would become too big one day _ too big to lift, too big to move, too big to take along on a family outing.
And so they decided to keep her small.
And here's the other part people are freaking out over:
The treatment has involved a hysterectomy, surgery to prevent breast growth and subsequent high doses of estrogen.
Well %u2026 the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
financial issues? put themselves in the public eye? you didn't read the article, did you?
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
I do think they are morons for blogging. I don't really know what their motivations are for doing so.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
financial issues? put themselves in the public eye? you didn't read the article, did you?
I read several articles about it today. The BBC coverage in particular noted that they have discussed the cost of healthcare for a child-sized person versus an adult. They also didn't have to let their story be published.
Since that's not an option unless they'd have liked to risk imprisonment (leaving their other children to be cared for by someone else), I maintain that people should mind their own fucking beeswax. Since they aren't the ones having to wipe her mouth, maintain her feeding tube and move her to keep her from getting bedsores, they should shut up.
. . . Jeffrey Brosco of the University of Miami, a co-author of an editorial criticizing the treatment in the October issue of the Archives of Pediatrics & Adolescent Medicine.
"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties.
"And," he said, "our societal ethics may change . But we are going to have to discuss this as a society. We are going to have to say this is right or this is wrong, and thus decide whether we will allow it."
I agree with Mr Brosco, but I think I approve of the treatment. On the surface it seems to hold the greatest potential to maintain or improve the quality of life for her and her family.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
financial issues? put themselves in the public eye? you didn't read the article, did you?
I read several articles about it today. The BBC coverage in particular noted that they have discussed the cost of healthcare for a child-sized person versus an adult. They also didn't have to let their story be published.
But your patronizing tone is noted, so fuck off.
yeah, they discussed it among a lot of other things, and it's never been even remotely the main point. but even if they did have financial considerations, why shouldn't money be an issue? caring for a disabled family member completely wrecks and destroys families on a regular basis. it would be wonderful if we could all throw cost to the wind and have the best of everything for those who deserve it, but sometimes real people have to make hard choices.
I also wonder how they were supposed to not "let" their story be published. guns to the heads of the appropriate doctors and journalists? kidnappings and ransom notes? ask politely? I suppose it could be done.
and if you think that's my patronizing tone, you ain't seen nothing yet. I'm sorry you feel insulted; I don't think I could have made my accusation any more straightforward.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
I do think they are morons for blogging. I don't really know what their motivations are for doing so.
Same reason any number of us write journals, perhaps? To get shit off our chests?
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
they said on their website: "We wrote the article and published this web site to inform and help other families of "Pillow Angels" who might benefit from our experience."
they're trying to shed light on their side of the story, for parents everywhere.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
financial issues? put themselves in the public eye? you didn't read the article, did you?
I read several articles about it today. The BBC coverage in particular noted that they have discussed the cost of healthcare for a child-sized person versus an adult. They also didn't have to let their story be published.
But your patronizing tone is noted, so fuck off.
yeah, they discussed it among a lot of other things, and it's never been even remotely the main point. but even if they did have financial considerations, why shouldn't money be an issue? caring for a disabled family member completely wrecks and destroys families on a regular basis. it would be wonderful if we could all throw cost to the wind and have the best of everything for those who deserve it, but sometimes real people have to make hard choices.
I'm not criticizing them personally for making a decision motivated at least in part by finances. I just think it's a sad state of affairs that families are making drastic life decisions based on healthcare costs. It's hardly their fault- a different payer model for healthcare might have made it possible for them to make a different decision.
I also wonder how they were supposed to not "let" their story be published. guns to the heads of the appropriate doctors and journalists? kidnappings and ransom notes? ask politely? I suppose it could be done.
They could have simply asked their daughter's doc not to write about it, which would have been an interesting ethical question for the doc. But anyway, since the paper did not identify them by name, they didn't have to come forward and engage in a ridiculous debate that's being waged on, among other venues, a pr0n site message board.
and if you think that's my patronizing tone, you ain't seen nothing yet. I'm sorry you feel insulted; I don't think I could have made my accusation any more straightforward.
I can't be bothered to feel personally insulted every time some child acts like an asshole, but if you think that's straightforward, you spend too much time here.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
they said on their website: "We wrote the article and published this web site to inform and help other families of "Pillow Angels" who might benefit from our experience."
they're trying to shed light on their side of the story, for parents everywhere.
Yeah, but that's not PRGS's point- they don't magically put themselves above criticism in the public eye just b/c they publish an altruistic blog.
adjunct said:
I'm not criticizing them personally for making a decision motivated at least in part by finances. I just think it's a sad state of affairs that families are making drastic life decisions based on healthcare costs. It's hardly their fault- a different payer model for healthcare might have made it possible for them to make a different decision.
where are you pulling that "based on" thing from? you've latched onto that like a lamprey, to the point of apparently rejecting every other aspect of the story. I've read a few articles on the topic myself, and never seen anything but a passing mention of financial issues.
ridiculous debate that's being waged on, among other venues, a pr0n site message board.
how does the nature venue have even the slightest bearing on the nature of the debate?
I can't be bothered to feel personally insulted
well, I'm glad you somehow managed to squeeze it into your schedule anyway, I guess.
I can't judge these people. I wouldn't want to be in their shoes and the fact that they have the stamina to look after this girl makes them better than me already. But the surgery makes me morally uncomfortable.
Andvari said:
I can't judge these people. I wouldn't want to be in their shoes and the fact that they have the stamina to look after this girl makes them better than me already. But the surgery makes me morally uncomfortable.
I'd have to agree that the parents are doing what's best for their child. The rights of the disabled is a real issue, which is why the eugenics term has been bandied about. It might be different if these major steps were simply to make thing easier for her carers, but that doesn't seem to be the case at all.
adjunct said:
Well ... the BBC coverage mentions that part of this is to keep her from maturing sexually as a deterrent to sexual abuse- assuming someone else continues to care for her in their absence/after they grow old and die. Which is, of course, utter bullshit- there are still pedophiles, right?
It's interesting that quality of life and healthcare have essentially been reduced to financial issues.
Also, no one has any business judging these parents? Maybe they shouldn't put themselves in the public eye if they don't want to be judged.
I do think they are morons for blogging. I don't really know what their motivations are for doing so.
Same reason any number of us write journals, perhaps? To get shit off our chests?
Actually, you are right. And really, whether they were using it to solicit donations, network with other parents in similar situations, or just to vent, that's none of my business either. Just because something is in the public eye, doesn't make it a public concern.
adjunct said:
I'm not criticizing them personally for making a decision motivated at least in part by finances. I just think it's a sad state of affairs that families are making drastic life decisions based on healthcare costs. It's hardly their fault- a different payer model for healthcare might have made it possible for them to make a different decision.
where are you pulling that "based on" thing from? you've latched onto that like a lamprey, to the point of apparently rejecting every other aspect of the story. I've read a few articles on the topic myself, and never seen anything but a passing mention of financial issues.
I haven't rejected any other part of the story, but the fact that the financial aspect of the situation is a salient factor is pretty sad, IMO.
ridiculous debate that's being waged on, among other venues, a pr0n site message board.
how does the nature venue have even the slightest bearing on the nature of the debate?
I dunno, it increases the snarkiness quotient?
I can't be bothered to feel personally insulted
well, I'm glad you somehow managed to squeeze it into your schedule anyway, I guess.
I'll pencil you in for a witty riposte next Tuesday, okay?
PRockGirlScout said:
Just because something is in the public eye, doesn't make it a public concern.
You keep saying that without anything to support it.
I'm not sure it's an argument that can be supported with facts. Are you looking for an analogy that's perfectly matched to the topic at hand but also somehow inarguably supports my opinion? I don't have one.
PRockGirlScout said:
Just because something is in the public eye, doesn't make it a public concern.
You keep saying that without anything to support it.
I'm not sure it's an argument that can be supported with facts. Are you looking for an analogy that's perfectly matched to the topic at hand but also somehow inarguably supports my opinion? I don't have one.
I look at it like this: we have a wide variety of personal publishing options online, including private blogs, public blogs, personal websites, etc.- all of which are pretty good venues for the more personal things you mention like venting, etc. However, they chose to not only go public, but extremely public- they clearly want dialogue and commentary.
adjunct said:
I'm not criticizing them personally for making a decision motivated at least in part by finances. I just think it's a sad state of affairs that families are making drastic life decisions based on healthcare costs. It's hardly their fault- a different payer model for healthcare might have made it possible for them to make a different decision.
where are you pulling that "based on" thing from? you've latched onto that like a lamprey, to the point of apparently rejecting every other aspect of the story. I've read a few articles on the topic myself, and never seen anything but a passing mention of financial issues.
I haven't rejected any other part of the story, but the fact that the financial aspect of the situation is a salient factor is pretty sad, IMO.
well, of course it's sad, but with "based on" and "boils down to" you make it sound like money is the only thing on their mind. I've had family members go vegetable, so I can say it's very goddamn complicated, and kind of insulting to have a similar situation so callously simpifiied..
I can't be bothered to feel personally insulted
well, I'm glad you somehow managed to squeeze it into your schedule anyway, I guess.
I'll pencil you in for a witty riposte next Tuesday, okay?
oh come on, you can think of something witty before tuesday, surely!
PRockGirlScout
Portland, OR
October 2005
JAN 04, 2007 07:48 PM