The Ashley Treatment
January 3, 2007 5:14 PM Subscribe
A number of articles are being published regarding a Washington family's controversial decision to administer a series of medical procedures that will prevent their developmentally disabled daughter from growing. The family has now created a blog to discuss their side of the issue regarding an ongoing debate in bioethics circles.
My first thought when I started reading this story was "Well wouldn't that help with bedsores?" and, lo, that's part of the plan!
I say huzzah for the parents, I think they made a difficult decision and that anything which improves the life of this kid is a good thing.
posted by eparchos at 5:24 PM on January 3, 2007
I say huzzah for the parents, I think they made a difficult decision and that anything which improves the life of this kid is a good thing.
posted by eparchos at 5:24 PM on January 3, 2007
This is a very interesting story, thanks for posting it.
I fear that the additional publicity (not mefi, the blog etc) will out the parents and they will be subject of some awful vigil by people with nothing better to do.
If that happens, maybe the family could get the vigileers to agree to some roster system whereby they help care for Ashley, take her on trips etc.
posted by wilful at 5:32 PM on January 3, 2007
I fear that the additional publicity (not mefi, the blog etc) will out the parents and they will be subject of some awful vigil by people with nothing better to do.
If that happens, maybe the family could get the vigileers to agree to some roster system whereby they help care for Ashley, take her on trips etc.
posted by wilful at 5:32 PM on January 3, 2007
I still haven't quite figured out how I feel about this. On one hand I just feel that an individual should have a capability to growth that arises out of larger notions of bodily integrity and personal autonomy. On the other hand, the family is making a good argument that is the best way to provide her with the greatest possible quality of life, which seems to be more compelling to me on many levels. I remember reading about this in brief a few months ago and didn't know what to think then either.
posted by allen.spaulding at 5:35 PM on January 3, 2007
posted by allen.spaulding at 5:35 PM on January 3, 2007
wilful - regarding protesters, that's a good point. Taking a page from Planned Parenthood's playbook it would be easy to get people to "sponsor" a picketer and donate money to the medical fund for each protest. Regardless of my mixed feelings, I do believe these people deserve some privacy and wouldn't mind giving a dollar as a counterincentive to those who believe otherwise.
posted by allen.spaulding at 5:39 PM on January 3, 2007
posted by allen.spaulding at 5:39 PM on January 3, 2007
It does sound creepy, but the more I think about it the more sense it makes. I'm glad I'm not the parrents, that's tough.
Allen, I think that when discussing a person as brain damaged as Ashley, issues of personal autonomy are invalid. She doesn't have any personal autonomy, and unlike a normal infant who is expected to devleop personal autonomy she never will. I'm always leery of anything justified with the line "its for their own good", but in this instance it does seem valid. If there were any expectation that she could develop intellectually what her parrents did would be horrible, but there isn't so it isn't.
As for the eugenics angle, I really don't think it applies. The only way she could ever reproduce would be if she were raped, it simply isn't possible for her to consent to sex. And yup, that is the first step down a slippery slope, but I think we can avoid falling.
posted by sotonohito at 5:52 PM on January 3, 2007
Allen, I think that when discussing a person as brain damaged as Ashley, issues of personal autonomy are invalid. She doesn't have any personal autonomy, and unlike a normal infant who is expected to devleop personal autonomy she never will. I'm always leery of anything justified with the line "its for their own good", but in this instance it does seem valid. If there were any expectation that she could develop intellectually what her parrents did would be horrible, but there isn't so it isn't.
As for the eugenics angle, I really don't think it applies. The only way she could ever reproduce would be if she were raped, it simply isn't possible for her to consent to sex. And yup, that is the first step down a slippery slope, but I think we can avoid falling.
posted by sotonohito at 5:52 PM on January 3, 2007
Man, that's a rough story. Some friends had a child in a similar situation when born but the baby didn't live very long (aside from not rolling over or holding its head up or eating, it would stop breathing several times a day) and sometimes I've wondered if there are situations worse than dying. I can't imagine they could continue her care if she grew to 5' 6" and weighed 150lbs.
posted by mathowie at 5:54 PM on January 3, 2007
posted by mathowie at 5:54 PM on January 3, 2007
I don't know how I feel about it either. It seems like an experiment that could go wrong. I can certainly empathize with the parents though, and hope the best for their situation.
This is very disturbing. From the Guardian Unlimited article:
In 1956 MA Goldzieher became the first to report using high doses of oestrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed oestrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues.
posted by LoriFLA at 5:57 PM on January 3, 2007
This is very disturbing. From the Guardian Unlimited article:
In 1956 MA Goldzieher became the first to report using high doses of oestrogen to treat exceptionally tall girls. Over ensuing years thousands of tall girls were prescribed oestrogen to prevent them tipping over the 6ft mark, protecting their marriage prospects. As the stigma against tallness in women has declined, so has the practice, though it still continues.
posted by LoriFLA at 5:57 PM on January 3, 2007
sotonohito - I don't disagree with you at all, it just makes me very wary. Martha Nussbaum has written about this in a book that I've been meaning to read, as I get much of my language of capabilities from her and Sen. I guess I just freeze a bit when it comes to forcibly denying someone what I consider a basic entitlement that is necessary for human dignity, it doesn't mean it's wrong.
posted by allen.spaulding at 6:00 PM on January 3, 2007 [1 favorite]
posted by allen.spaulding at 6:00 PM on January 3, 2007 [1 favorite]
I third not being sure how to feel about it.
I do know, however, that euthanasia would be just as ethically dubious but far more humane. Bill Frist probably knows where I live, so I'll leave it at that.
posted by Saucy Intruder at 6:00 PM on January 3, 2007
I do know, however, that euthanasia would be just as ethically dubious but far more humane. Bill Frist probably knows where I live, so I'll leave it at that.
posted by Saucy Intruder at 6:00 PM on January 3, 2007
it looks like they have put a lot of thought into caring for their child. those have to be hard decisions to make as a parent, their pragmatic approach to the situation is comendable.
posted by nola at 6:01 PM on January 3, 2007
posted by nola at 6:01 PM on January 3, 2007
Having to face issues like this is one of the reasons I couldn't see myself as a parent. Life sure throws a curve ball sometimes.
And who doesn't like a tall woman? That's insanity, there.
posted by maxwelton at 6:05 PM on January 3, 2007
And who doesn't like a tall woman? That's insanity, there.
posted by maxwelton at 6:05 PM on January 3, 2007
"There were several postings by parents with special need children, indicating that they wish they had the option of the “Ashley Treatment” before their kids reached their adult size and how this would have changed their lives significantly... One mother explained in graphic detail how heart breaking it was for her to have to let her daughter go to a care center since “I am tired, my body is breaking down rapidly, and emotionally drained” and she stopped being able to care for her daughter at home."
Given their daughters situation and the possible alternatives, it seems clear that this was the right thing to do. Good for them.
posted by CitrusFreak12 at 6:26 PM on January 3, 2007
Given their daughters situation and the possible alternatives, it seems clear that this was the right thing to do. Good for them.
posted by CitrusFreak12 at 6:26 PM on January 3, 2007
I do know, however, that euthanasia would be just as ethically dubious but far more humane.
Are you trying to tell me that ending this child's life has equal moral ambiguity and more compassion compared to surgical procedures which reduce the chance for skin sores, pneumonia, and bladder infection, increase her parents’ ability to care for her, and all around improve her total quality of life?
I really hope that’s not what you’re saying.
posted by CitrusFreak12 at 6:35 PM on January 3, 2007
Are you trying to tell me that ending this child's life has equal moral ambiguity and more compassion compared to surgical procedures which reduce the chance for skin sores, pneumonia, and bladder infection, increase her parents’ ability to care for her, and all around improve her total quality of life?
I really hope that’s not what you’re saying.
posted by CitrusFreak12 at 6:35 PM on January 3, 2007
I am also in the don't know how I feel about this. For these parents, I think it's a good thing, BUT, I see the potential for someone else to have a developmentally disabled in the family, see the ashley treatment and apply it to situations where it would not be a humane act. It would become a pure selfish act on the part of the parents.
Once something is done once, it's easy to do it again and again and again....it's hard to draw a fine line in the sand and say, "It ends here."
posted by Holy foxy moxie batman! at 6:36 PM on January 3, 2007
Once something is done once, it's easy to do it again and again and again....it's hard to draw a fine line in the sand and say, "It ends here."
posted by Holy foxy moxie batman! at 6:36 PM on January 3, 2007
I have close family friends with a severely disabled daughter (cerebral palsy - you name it).
She's now 22 years old and 5'8', they love her dearly and and are dedicated to her care.
Everytime I see them I can't help but notice the general deterioration in their health (the wife recently had a double bypass at 50). Their marriage is essentially over (they remain together for her) and they will be working into their old age to pay for her care. They aren't resentful though and their biggest fear is what will happen to her when they pass.
You can't criticise people in this position because every decision they make is difficult. I for one, can see why this couple chose to do this. Ultimately, I think it will help both the child and the parents.
The support for carers of the disabled is pitiful, they deserve a medal not criticism.
posted by bramoire at 6:38 PM on January 3, 2007 [5 favorites]
She's now 22 years old and 5'8', they love her dearly and and are dedicated to her care.
Everytime I see them I can't help but notice the general deterioration in their health (the wife recently had a double bypass at 50). Their marriage is essentially over (they remain together for her) and they will be working into their old age to pay for her care. They aren't resentful though and their biggest fear is what will happen to her when they pass.
You can't criticise people in this position because every decision they make is difficult. I for one, can see why this couple chose to do this. Ultimately, I think it will help both the child and the parents.
The support for carers of the disabled is pitiful, they deserve a medal not criticism.
posted by bramoire at 6:38 PM on January 3, 2007 [5 favorites]
"Dr. Howard, Dr. Frist, Dr. Howard...
Paging Doctor Moe Howard.
Paging Doctor Bill Frist.
Paging Doctor Curly Howard.
You're wanted in the "video" diagnostician booth...
...Dr. Howard, Dr. Frist, Dr. Howard."
posted by tkchrist at 6:41 PM on January 3, 2007
Paging Doctor Moe Howard.
Paging Doctor Bill Frist.
Paging Doctor Curly Howard.
You're wanted in the "video" diagnostician booth...
...Dr. Howard, Dr. Frist, Dr. Howard."
posted by tkchrist at 6:41 PM on January 3, 2007
I hope the parents find their way here, as the thread so far has been respectful and mostly supportive.
I, too, believe the parents did the right thing, for what that's worth. Which isn't much I realize.
However, bioethics is a field I do have an interest in both personally and (hopefully one day) professionally, and I believe what the parents, and more specifically their doctors, did is well within the boundaries of ethical behavior.
To have an argument, the people against this would have to produce a "con", or a bad side of this. Note that "it seems weird" or "It's just not right" are not acceptable answers. It "seems weird" to pull out a dead person's heart and use it in a live person. That doesn't make it the tiniest bit unethical.
Also, it would be great to see this thread do something besides degenerate into a euthanasia thread, but that's probably hoping for too much.
posted by Ynoxas at 6:41 PM on January 3, 2007 [2 favorites]
I, too, believe the parents did the right thing, for what that's worth. Which isn't much I realize.
However, bioethics is a field I do have an interest in both personally and (hopefully one day) professionally, and I believe what the parents, and more specifically their doctors, did is well within the boundaries of ethical behavior.
To have an argument, the people against this would have to produce a "con", or a bad side of this. Note that "it seems weird" or "It's just not right" are not acceptable answers. It "seems weird" to pull out a dead person's heart and use it in a live person. That doesn't make it the tiniest bit unethical.
Also, it would be great to see this thread do something besides degenerate into a euthanasia thread, but that's probably hoping for too much.
posted by Ynoxas at 6:41 PM on January 3, 2007 [2 favorites]
Are you trying to tell me that ending this child's life has equal moral ambiguity and more compassion compared to surgical procedures which reduce the chance for skin sores, pneumonia, and bladder infection, increase her parents’ ability to care for her, and all around improve her total quality of life?
Yes, when there is absolutely no capacity for joy, eliminating suffering is more compassionate than reducing it.
posted by Saucy Intruder at 6:42 PM on January 3, 2007
Yes, when there is absolutely no capacity for joy, eliminating suffering is more compassionate than reducing it.
posted by Saucy Intruder at 6:42 PM on January 3, 2007
eliminating suffering is more compassionate than reducing it.
A parent will — and should — do just about anything to ease the suffering of a child. But asking a parent to kill a child? C'mon. Even if it IS the best thing to do, few parents can live that. Not that I am against euthanasia. But can you imagine how hard it is for them NOW. And you want to pile on the guilt of killing the child?
Man. My heart is breaking. I can't be in this thread much longer.
posted by tkchrist at 6:47 PM on January 3, 2007
odinsdream writes "I'm trying to run my own thought exercise to figure out what exactly wouldn't be acceptable if this is. It undeniably will decrease problems that would crop up in the future related to her care, but so would amputating all of her limbs."
Man, I'm having a real hard time coming up with a cogent response to this. I think you might have a point.
posted by mr_roboto at 6:53 PM on January 3, 2007
Man, I'm having a real hard time coming up with a cogent response to this. I think you might have a point.
posted by mr_roboto at 6:53 PM on January 3, 2007
Saucy Intruder: Yes, when there is absolutely no capacity for joy, eliminating suffering is more compassionate than reducing it."
You know, if it was a kid of mine, I don't know that I'd have the stones to make this decision, but if the boot were on the other foot and I were the kid, I'd sure as hell hope that my parents had what it took to do this.
posted by PeterMcDermott at 6:58 PM on January 3, 2007
You know, if it was a kid of mine, I don't know that I'd have the stones to make this decision, but if the boot were on the other foot and I were the kid, I'd sure as hell hope that my parents had what it took to do this.
posted by PeterMcDermott at 6:58 PM on January 3, 2007
This decision, of course, being the decision to opt for euthenasia/do not resuscitate/withdraw treatment other than pain relief
posted by PeterMcDermott at 6:59 PM on January 3, 2007
posted by PeterMcDermott at 6:59 PM on January 3, 2007
" . . . but so would amputating all of her limbs."
No, it wouldn't. These procedures specifically enable the family to continue to include her in family activities -- they're really specific about that -- and increase her comfort. Removing her limbs would not make her comfortable -- it would probably be very uncomfortable to suddenly not have one's legs -- nor would it increase her ability to interact with her family -- it would decrease it, since she could no longer show her happiness as they state she does, by waving her arms. Being someone in possession of a uterus myself, I really don't think I would miss its physical presence as much as I would the physical presence of my legs. It's not that it's unimportant; it's just that one's legs are far more present in one's life than one's uterus. Under normal circumstances, anyway.
posted by Medieval Maven at 7:10 PM on January 3, 2007 [1 favorite]
No, it wouldn't. These procedures specifically enable the family to continue to include her in family activities -- they're really specific about that -- and increase her comfort. Removing her limbs would not make her comfortable -- it would probably be very uncomfortable to suddenly not have one's legs -- nor would it increase her ability to interact with her family -- it would decrease it, since she could no longer show her happiness as they state she does, by waving her arms. Being someone in possession of a uterus myself, I really don't think I would miss its physical presence as much as I would the physical presence of my legs. It's not that it's unimportant; it's just that one's legs are far more present in one's life than one's uterus. Under normal circumstances, anyway.
posted by Medieval Maven at 7:10 PM on January 3, 2007 [1 favorite]
odinsdream writes "I'm trying to run my own thought exercise to figure out what exactly wouldn't be acceptable if this is. It undeniably will decrease problems that would crop up in the future related to her care, but so would amputating all of her limbs."
And mr_roboto responds: Man, I'm having a real hard time coming up with a cogent response to this. I think you might have a point.
I was thinking this too, except that amputation would dehumanize Ashley. Now, it may be that this would have no meaning to her, but I think it would matter to those who are taking care of her, and therefore it could adversely affect her quality of life.
Not to mention, that as a moral issue it is important to maintain respect for the humanity of a developmentally disabled person. Stopping her growth, while odd, does not seem to me to be inherently disrespectful. However, amputating her limbs clearly is.
posted by cotterpin at 7:21 PM on January 3, 2007
And mr_roboto responds: Man, I'm having a real hard time coming up with a cogent response to this. I think you might have a point.
I was thinking this too, except that amputation would dehumanize Ashley. Now, it may be that this would have no meaning to her, but I think it would matter to those who are taking care of her, and therefore it could adversely affect her quality of life.
Not to mention, that as a moral issue it is important to maintain respect for the humanity of a developmentally disabled person. Stopping her growth, while odd, does not seem to me to be inherently disrespectful. However, amputating her limbs clearly is.
posted by cotterpin at 7:21 PM on January 3, 2007
I completely agree with the family's decision.
In 99% of times and places in the world, no one would have thought anything if the family had simply abandoned the child to die. Human life is sacred -- but when you read about things like this, I at least wonder if destroying two full lives for the sake of one very partial one is really the morally correct decision.
Anything that family can do to make it easy for *all* of them is great.
posted by lupus_yonderboy at 7:25 PM on January 3, 2007
In 99% of times and places in the world, no one would have thought anything if the family had simply abandoned the child to die. Human life is sacred -- but when you read about things like this, I at least wonder if destroying two full lives for the sake of one very partial one is really the morally correct decision.
Anything that family can do to make it easy for *all* of them is great.
posted by lupus_yonderboy at 7:25 PM on January 3, 2007
I feel compelled to post. My sister has (well, had) three children. Two of them developed Vici's Syndrome and never developed any functions above, well, swallowing. The older child died last winter at the age of 8, which is the oldest anyone's ever lived, AFAIK -- thanks largely due to the fact that my sister is an M.D. He is survived by a "normal" (awesome, ADHD, perfect) younger and, sadly, the youngest sister who also has Vici's.
It's such a profoundly sad situation... KNOWING your child will never develop, will never walk nor talk... knowing he's going to die too soon.. what do you do? And, fuck, you KNOW you will go through the same thing with your youngest daughter. Christ.
My brother and his wife were pretty matter-of-fact about the whole thing, agreeing that letting him die -- if not deliberately hastening the process -- was the best, most humane option. I dunno... I couldn't. No way. I guess it's easier when you're a bit removed.
If you'll forgive me, I'm going to go get drunk now.
posted by LordSludge at 7:33 PM on January 3, 2007
It's such a profoundly sad situation... KNOWING your child will never develop, will never walk nor talk... knowing he's going to die too soon.. what do you do? And, fuck, you KNOW you will go through the same thing with your youngest daughter. Christ.
My brother and his wife were pretty matter-of-fact about the whole thing, agreeing that letting him die -- if not deliberately hastening the process -- was the best, most humane option. I dunno... I couldn't. No way. I guess it's easier when you're a bit removed.
If you'll forgive me, I'm going to go get drunk now.
posted by LordSludge at 7:33 PM on January 3, 2007
odinsdream: I guess I accept the argument that Ashley's quality of life will be better if she remains small and doesn't go through puberty. Growth and puberty, for her, will adversely affect her life. Yet, she won't experience development as a person as a result of puberty, so I don't see her losing anything by halting it.
I think that if the decision was done with her best interests in mind, well it might be wrong but I don't think it can be disrespectful.
posted by cotterpin at 7:47 PM on January 3, 2007
I think that if the decision was done with her best interests in mind, well it might be wrong but I don't think it can be disrespectful.
posted by cotterpin at 7:47 PM on January 3, 2007
But what happens when the parents are 60 and still caring for a nine year old? What happens when they both pass away? Who cares for her then?
posted by armoured-ant at 8:04 PM on January 3, 2007
posted by armoured-ant at 8:04 PM on January 3, 2007
I would like handles surgically implanted in my back to make me more portable.
Really, these parents made a very difficult decision. But when you break it down, is it that much different than others?
Some people have hysterectomies to alleviate future chances of cysts; some to regulate their hormones or solve other medical problems. This is just an unusual use of surgical technique, but I think it hits our sensitive areas because of the idea of "keeping someone a child" has probably occured to any of us who are parents. Wouldn't it be nice to freeze time so our little ones don't have to grow up and leave us?
To force our children to stay small, or even stay home after growing up, is selfish and unnatural, and I think this situation triggers that instinct. But it's really not the same thing, is it?
posted by The Deej at 8:05 PM on January 3, 2007 [1 favorite]
Really, these parents made a very difficult decision. But when you break it down, is it that much different than others?
Some people have hysterectomies to alleviate future chances of cysts; some to regulate their hormones or solve other medical problems. This is just an unusual use of surgical technique, but I think it hits our sensitive areas because of the idea of "keeping someone a child" has probably occured to any of us who are parents. Wouldn't it be nice to freeze time so our little ones don't have to grow up and leave us?
To force our children to stay small, or even stay home after growing up, is selfish and unnatural, and I think this situation triggers that instinct. But it's really not the same thing, is it?
posted by The Deej at 8:05 PM on January 3, 2007 [1 favorite]
Our good friend's sister-in-law had a daughter this past spring with Trisomy 13. It's pretty rare for them to even make it to birth. In many ways, their course of action was considerably "easier" than the family in this article, if only because they knew Caterina wouldn't survive for too long. Her parents handled themselves with a strength and grace I do not possess.
Despite knowing them only peripherally, and that the prognosis was not good, when I received an email that she'd passed after 8 weeks I had to leave my office and found myself sobbing in a parking lot behind my building. I suppose my point is that it's just about impossible to know what someone goes through in these situations unless you've experienced it yourself, and regardless of any misgivings I might, as a parent myself, have about some of the decisions they've made, I simply cannot judge them.
posted by jalexei at 8:14 PM on January 3, 2007 [1 favorite]
Despite knowing them only peripherally, and that the prognosis was not good, when I received an email that she'd passed after 8 weeks I had to leave my office and found myself sobbing in a parking lot behind my building. I suppose my point is that it's just about impossible to know what someone goes through in these situations unless you've experienced it yourself, and regardless of any misgivings I might, as a parent myself, have about some of the decisions they've made, I simply cannot judge them.
posted by jalexei at 8:14 PM on January 3, 2007 [1 favorite]
I think that it's incredibly brave and wonderful that Ashley's parents went on to have more children. If I had a child who wouldn't develop past the mental age of three months, I don't know if I would have it in me to try again. What if you had THREE kids in that situation? All the love in the world doesn't provide the actual *resources* to handle a situation like that.
(Although, to answer the question armoured-ant posed; I imagine that when Ashley's parents pass, a lot of her caretaking responsibilities will go to her siblings.)
From the blog post, it sounds like they're doing everything they can to maximize her quality of life and that their pro-active solutions could go a long way to help provide treatment plans for other severely disabled girls.
posted by grapefruitmoon at 8:15 PM on January 3, 2007
(Although, to answer the question armoured-ant posed; I imagine that when Ashley's parents pass, a lot of her caretaking responsibilities will go to her siblings.)
From the blog post, it sounds like they're doing everything they can to maximize her quality of life and that their pro-active solutions could go a long way to help provide treatment plans for other severely disabled girls.
posted by grapefruitmoon at 8:15 PM on January 3, 2007
From a utilitarian perspective the most important question is how the procedure will likely make the girl feel. If there was reason to think amputating her limbs would help in her care while increasing or not diminishing her subjective state and quality of life, then that would be the best option. This does not appear to be the case with this scenario, while the growth inhibition scenario does appear that way.
All the 'dehumanizing' concerns appear more about people committing the naturalistic fallacy, than valid moral concerns. (i.e. it isn't "natural" for bodies to stop growing, therefore it is wrong to do it)
The less metaphysical you can be while thinking about this the better.
posted by dgaicun at 8:18 PM on January 3, 2007
All the 'dehumanizing' concerns appear more about people committing the naturalistic fallacy, than valid moral concerns. (i.e. it isn't "natural" for bodies to stop growing, therefore it is wrong to do it)
The less metaphysical you can be while thinking about this the better.
posted by dgaicun at 8:18 PM on January 3, 2007
armoured-ant: But what happens when the parents are 60 and still caring for a nine year old? What happens when they both pass away? Who cares for her then?
One of the objectives of this procedure was that it would make her easier to care for. There is no hope for her ever being able to live independently in either case.
posted by Mitrovarr at 8:20 PM on January 3, 2007
One of the objectives of this procedure was that it would make her easier to care for. There is no hope for her ever being able to live independently in either case.
posted by Mitrovarr at 8:20 PM on January 3, 2007
A parent will — and should — do just about anything to ease the suffering of a child. But asking a parent to kill a child? C'mon. Even if it IS the best thing to do, few parents can live that.
Exhibit A: Robert Latimer.
posted by Hildegarde at 8:26 PM on January 3, 2007 [1 favorite]
Exhibit A: Robert Latimer.
Robert Latimer ended his daughter's life because she was in incurable, excruciating and almost unrelenting pain. At the time of her death, Tracy was twelve years of age, weighed thirty-eight pounds, was quadraplegic and bedridden most of the time, suffered five to six seizures daily, and had the mental capacity of a three to four month old baby.I one told my mother about the basic plot of Beloved, and she noted that, if the options presented were a lifetime of unrelenting suffering or death, any mother will choose death for her children and would be willing to deliver it. Rather than finding this scary (I mean, this is my mother!) I found it oddly comforting. I'm not sure many parents are as practical and emotionally strong as my mother is, however. But there you go.
posted by Hildegarde at 8:26 PM on January 3, 2007 [1 favorite]
Astonishing story, great post, thanks. Difficult situation, yes, but to me it's clearly an ethically defensible decision by this particular set of parents, in coordination with extensive research and medical supervision.
Whether those conditions would always apply if this procedure becomes widespread is another question, though...
posted by mediareport at 8:30 PM on January 3, 2007
Whether those conditions would always apply if this procedure becomes widespread is another question, though...
posted by mediareport at 8:30 PM on January 3, 2007
But what happens when the parents are 60 and still caring for a nine year old? What happens when they both pass away? Who cares for her then?
They'll be 60 and still caring for a 3 month old in the body of a 9 year old. Which'll be quite a lot easier than caring for a 3 month old in the body of a 35 year old. And that'll be true again if they pre-decease her and someone else has to care for the 3 month old in a body of a 9 year old.
posted by jacquilynne at 8:32 PM on January 3, 2007
They'll be 60 and still caring for a 3 month old in the body of a 9 year old. Which'll be quite a lot easier than caring for a 3 month old in the body of a 35 year old. And that'll be true again if they pre-decease her and someone else has to care for the 3 month old in a body of a 9 year old.
posted by jacquilynne at 8:32 PM on January 3, 2007
odinsdream writes "I'm trying to run my own thought exercise to figure out what exactly wouldn't be acceptable if this is. It undeniably will decrease problems that would crop up in the future related to her care, but so would amputating all of her limbs."
Amputating her limbs would be a drastic change to Ashley's body, one that would definitely hinder her already limited ability to interact with her family. What the family actually did is take steps to keep her as she is now. As they point out, Ashley has no need for a uterus and functioning breasts. She does need good care, which is much easier at her current size. She will never know what she is missing, and if she were a foot taller with monthly periods and large breasts it would gain her nothing whatsoever as far as quality of life, but would drastically decrease the family's ability to care for her and keep her healthy. It would also necessitate certain kinds of intimate care (menstrual pads, etc.) that will further complicate care at, again, no benefit to Ashley. The parents said this wasn't a hard decision, and I believe them. It seems like an obvious smart move to me, and I believe Ashley will be a much happier, healthier person for it. Wasn't that the point?
This is in no way analogous to an amputation, except in some rare case where having limbs cause the patient to have more difficulty interacting with other, made bathing appreciably more difficult, increased the likelihood of infections, bedsores and cancer, and served no useful function at all to the patient. In which case, I guess I'd vote for amputation, too. If I'm in that situation, please take up a collection to pay for my limbs to be removed.
posted by Pater Aletheias at 8:35 PM on January 3, 2007
Amputating her limbs would be a drastic change to Ashley's body, one that would definitely hinder her already limited ability to interact with her family. What the family actually did is take steps to keep her as she is now. As they point out, Ashley has no need for a uterus and functioning breasts. She does need good care, which is much easier at her current size. She will never know what she is missing, and if she were a foot taller with monthly periods and large breasts it would gain her nothing whatsoever as far as quality of life, but would drastically decrease the family's ability to care for her and keep her healthy. It would also necessitate certain kinds of intimate care (menstrual pads, etc.) that will further complicate care at, again, no benefit to Ashley. The parents said this wasn't a hard decision, and I believe them. It seems like an obvious smart move to me, and I believe Ashley will be a much happier, healthier person for it. Wasn't that the point?
This is in no way analogous to an amputation, except in some rare case where having limbs cause the patient to have more difficulty interacting with other, made bathing appreciably more difficult, increased the likelihood of infections, bedsores and cancer, and served no useful function at all to the patient. In which case, I guess I'd vote for amputation, too. If I'm in that situation, please take up a collection to pay for my limbs to be removed.
posted by Pater Aletheias at 8:35 PM on January 3, 2007
Well...phrontist...you could read the parents blog but I'll cut and paste for you:
Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.
The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her natural hormones.
Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused, including a case mentioned in the discussion4. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure.
posted by vacapinta at 8:45 PM on January 3, 2007
Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.
The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her natural hormones.
Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused, including a case mentioned in the discussion4. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure.
posted by vacapinta at 8:45 PM on January 3, 2007
Why is the removal of her uterus required?
The removal of the uterus ceases menstruation and her ability to carry a child.
posted by LoriFLA at 8:45 PM on January 3, 2007
The removal of the uterus ceases menstruation and her ability to carry a child.
posted by LoriFLA at 8:45 PM on January 3, 2007
Why is the removal of her uterus required?
It's not technically required, but the estrogen treatment to limit her height would hasten the onset of menarche. From the family blog:
"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.
"The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her natural hormones.
"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused, including a case mentioned in the discussion. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure."
posted by Pater Aletheias at 8:45 PM on January 3, 2007
It's not technically required, but the estrogen treatment to limit her height would hasten the onset of menarche. From the family blog:
"Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.
"The procedure involved removing Ashley’s uterus but keeping her ovaries to maintain her natural hormones.
"Additional and incidental benefits include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused, including a case mentioned in the discussion. The hysterectomy also eliminates the possibility of uterine cancer and other common and often painful complications that cause women later in life to undergo the procedure."
posted by Pater Aletheias at 8:45 PM on January 3, 2007
Why is the removal of her uterus required?
The estrogen treatments to stop her growth would cause her to begin menstruating, and presumably the cramps would cause her pain.
posted by oaf at 8:45 PM on January 3, 2007
The estrogen treatments to stop her growth would cause her to begin menstruating, and presumably the cramps would cause her pain.
posted by oaf at 8:45 PM on January 3, 2007
Argh. Beat me to it.
posted by Pater Aletheias at 8:46 PM on January 3, 2007
posted by Pater Aletheias at 8:46 PM on January 3, 2007
Why is the removal of her uterus required?
Rtfa?
In this case, I mean "read the fourth article."
It's the most comprehensive out of the five.
if the options presented were a lifetime of unrelenting suffering or death, any mother will choose death for her children and would be willing to deliver it
I missed the part in any of the articles which said Ashley was in any sort of pain whatsoever...
posted by CitrusFreak12 at 8:46 PM on January 3, 2007
Rtfa?
In this case, I mean "read the fourth article."
It's the most comprehensive out of the five.
if the options presented were a lifetime of unrelenting suffering or death, any mother will choose death for her children and would be willing to deliver it
I missed the part in any of the articles which said Ashley was in any sort of pain whatsoever...
posted by CitrusFreak12 at 8:46 PM on January 3, 2007
Wow, four of us just answered that.
OK, five now.
Now that's service.
posted by CitrusFreak12 at 8:49 PM on January 3, 2007
OK, five now.
Now that's service.
posted by CitrusFreak12 at 8:49 PM on January 3, 2007
odinsdream writes: It's my opinion that stopping someone's growth is not only odd, but specifically disrespectful of their humanity. Just as unnecessarily amputating limbs would be.
I really can't see why you'd think that. Growth feels important to a person because they acquire new physical capabilities and because others will perceive them for what they are (a grown up with experience) and act accordingly. Ashley will never feel that desire, her new physical capabilities would never be used. You could probably argue that her life might be easier if other people perceive her as a child rather than as an adult.
She's not any less human because she didn't grow and the real advantage is probably not that care will be easier it's that care will be better. I'm 100% with the parent.
To me humanity is best represented by it's capacity to reason and love, not by the particular physical attributes of humans. Our current form is mostly an accident of nature, and is nothing so sacred that we should hesitate to affect it if there are logical reasons to do it.
posted by coust at 9:06 PM on January 3, 2007
I really can't see why you'd think that. Growth feels important to a person because they acquire new physical capabilities and because others will perceive them for what they are (a grown up with experience) and act accordingly. Ashley will never feel that desire, her new physical capabilities would never be used. You could probably argue that her life might be easier if other people perceive her as a child rather than as an adult.
She's not any less human because she didn't grow and the real advantage is probably not that care will be easier it's that care will be better. I'm 100% with the parent.
To me humanity is best represented by it's capacity to reason and love, not by the particular physical attributes of humans. Our current form is mostly an accident of nature, and is nothing so sacred that we should hesitate to affect it if there are logical reasons to do it.
posted by coust at 9:06 PM on January 3, 2007
I missed the part in any of the articles which said Ashley was in any sort of pain whatsoever...
Right, I guess the parents just forgot to ask her.
posted by Saucy Intruder at 9:07 PM on January 3, 2007
Right, I guess the parents just forgot to ask her.
posted by Saucy Intruder at 9:07 PM on January 3, 2007
I think the parents absolutely have made the right decision. I am glad that they found supportive doctors.
Lordsludge, I'm sorry your family had to go through such a difficult and painful situation. However, I don't understand why they had more kids when they knew they had a 25% chance of going through it again. I think that is unfair to all involved including you.
posted by obol at 9:28 PM on January 3, 2007
Lordsludge, I'm sorry your family had to go through such a difficult and painful situation. However, I don't understand why they had more kids when they knew they had a 25% chance of going through it again. I think that is unfair to all involved including you.
posted by obol at 9:28 PM on January 3, 2007
odinsdream: "This is certainly difficult. I'm trying to run my own thought exercise to figure out what exactly wouldn't be acceptable if this is. It undeniably will decrease problems that would crop up in the future related to her care, but so would amputating all of her limbs.
Why not do that? I find that hard to stomach, however, and I'm sure others would. But, I find it hard to stomach for the same reasons I do the procedures described in the articles."
This is where I'm at, too.
I don't share the clear view of most in this thread. I find it incredibly difficult to swallow that convenience is a good enough reason to alter her body and violate her bodily autonomy. I don't know in what kind of situation this would feel justified to me, but right now, this is not one. It leads us down a very dangerous road and I can completely see why disability activists are up in arms.
posted by loiseau at 9:35 PM on January 3, 2007
Why not do that? I find that hard to stomach, however, and I'm sure others would. But, I find it hard to stomach for the same reasons I do the procedures described in the articles."
This is where I'm at, too.
I don't share the clear view of most in this thread. I find it incredibly difficult to swallow that convenience is a good enough reason to alter her body and violate her bodily autonomy. I don't know in what kind of situation this would feel justified to me, but right now, this is not one. It leads us down a very dangerous road and I can completely see why disability activists are up in arms.
posted by loiseau at 9:35 PM on January 3, 2007
...convenience...
See, there's your problem right there.
posted by wilful at 10:11 PM on January 3, 2007
See, there's your problem right there.
posted by wilful at 10:11 PM on January 3, 2007
I missed the part in any of the articles which said Ashley was in any sort of pain whatsoever...
Right, I guess the parents just forgot to ask her.
So what you're saying is, if a person is unable to communicate whether or not they are in pain, and there is no indication that they are, that we should be "humane" and euthanize them. Just to be on the safe side.
Perfectly reasonable.
posted by CitrusFreak12 at 10:14 PM on January 3, 2007
Right, I guess the parents just forgot to ask her.
So what you're saying is, if a person is unable to communicate whether or not they are in pain, and there is no indication that they are, that we should be "humane" and euthanize them. Just to be on the safe side.
Perfectly reasonable.
posted by CitrusFreak12 at 10:14 PM on January 3, 2007
and I can completely see why disability activists are up in arms.
posted by loiseau at 11:35 PM CST on January 3
What an unfortunate choice of phrase...
posted by Ynoxas at 10:37 PM on January 3, 2007
posted by loiseau at 11:35 PM CST on January 3
What an unfortunate choice of phrase...
posted by Ynoxas at 10:37 PM on January 3, 2007
I'd like to know when this treatment will be made available for kittens and puppies.
posted by Kraftmatic Adjustable Cheese at 10:44 PM on January 3, 2007
posted by Kraftmatic Adjustable Cheese at 10:44 PM on January 3, 2007
Exhibit A: Robert Latimer.
Counter Exhibit B: Terri Schiavo
Like I said. Few parents are truly willing to kill their own children... no matter how justified. Even when said children are ALREADY brain dead.
I one told my mother about the basic plot of Beloved, and she noted that, if the options presented were a lifetime of unrelenting suffering or death, any mother will choose death for her children and would be willing to deliver it.
Few parents could do this. Casual opinions solicited during fictional horror movies with Oprah Winfrey aside. The overwhelming reality when it comes down to the choice is to the contrary.
I know. My wife (and her brother in-law) had to authorize the removal of her sister from life support after complications from CF lead to an irreversible coma. My wife's parents could not do it. They could not even contemplate it. The doctors said it was parents who are most resistant to authorize termination of life support.
My wife's parents, even after a lifetime of anticipating that day may come (knowing what happens to children with CF), could not do it.
posted by tkchrist at 1:34 AM on January 4, 2007
Counter Exhibit B: Terri Schiavo
Like I said. Few parents are truly willing to kill their own children... no matter how justified. Even when said children are ALREADY brain dead.
I one told my mother about the basic plot of Beloved, and she noted that, if the options presented were a lifetime of unrelenting suffering or death, any mother will choose death for her children and would be willing to deliver it.
Few parents could do this. Casual opinions solicited during fictional horror movies with Oprah Winfrey aside. The overwhelming reality when it comes down to the choice is to the contrary.
I know. My wife (and her brother in-law) had to authorize the removal of her sister from life support after complications from CF lead to an irreversible coma. My wife's parents could not do it. They could not even contemplate it. The doctors said it was parents who are most resistant to authorize termination of life support.
My wife's parents, even after a lifetime of anticipating that day may come (knowing what happens to children with CF), could not do it.
posted by tkchrist at 1:34 AM on January 4, 2007
Permapuppies.
(Sidenote: is it unusual to not have strong feelings either way, re Ashley?)
posted by Tzarius at 1:45 AM on January 4, 2007
(Sidenote: is it unusual to not have strong feelings either way, re Ashley?)
posted by Tzarius at 1:45 AM on January 4, 2007
I don't like euthanasia so please listen when I say these parents are wrong. They are infantilizing this person, their "pillow angel" into a living doll. No, I have never had this problem in my life, there are many terrible decisions I have never had to make, but I still say, this is wrong.
posted by CCBC at 2:06 AM on January 4, 2007 [1 favorite]
posted by CCBC at 2:06 AM on January 4, 2007 [1 favorite]
CCBC: They are infantilizing this person, their "pillow angel" into a living doll.
It seems to me that nature has already permanently infantilized Ashley in all the ways that really matter.
posted by Mitrovarr at 2:50 AM on January 4, 2007
It seems to me that nature has already permanently infantilized Ashley in all the ways that really matter.
posted by Mitrovarr at 2:50 AM on January 4, 2007
Casual opinions solicited during fictional horror movies with Oprah Winfrey aside.
Dear God, man. The novel. I told my mother the plot of the novel. I had completely forgotten that there was a movie.
posted by Hildegarde at 4:21 AM on January 4, 2007
Dear God, man. The novel. I told my mother the plot of the novel. I had completely forgotten that there was a movie.
posted by Hildegarde at 4:21 AM on January 4, 2007
No, I have never had this problem in my life, there are many terrible decisions I have never had to make, but I still say, this is wrong.posted by CCBC
With respect, CCBC, I simply don't understand how you have the nerve to make that statement.
I am sure I am no more virtuous than you, I don't have special powers of empathy and I can be extremely judgemental.
But I can read.
Nothing the parents have written has softened your pre-packaged views?
There is no shred of doubt in your mind that they are simply wrong?
Is there any pile up of circumstances that might alter your view?
posted by Jody Tresidder at 5:42 AM on January 4, 2007
With respect, CCBC, I simply don't understand how you have the nerve to make that statement.
I am sure I am no more virtuous than you, I don't have special powers of empathy and I can be extremely judgemental.
But I can read.
Nothing the parents have written has softened your pre-packaged views?
There is no shred of doubt in your mind that they are simply wrong?
Is there any pile up of circumstances that might alter your view?
posted by Jody Tresidder at 5:42 AM on January 4, 2007
They are infantilizing this person, their "pillow angel" into a living doll.
this person is mentally equal to a 3 month old baby. HOw could they possibly "infantilize" her? She is medically an infant in a 9 year old's body. Speaking of a need for dignity and autonomy seems to me to entirely miss the facts of the matter: this person is unable to move herself, interact, recognize other people, communicate, or have any sort of meaningful life.
I am sure it is excruciating when it is your own child, but at a distance I see no reason why euthanasia would not be acceptable, and if that is too harsh for these parents, allowing them to prevent menses & possible pregnancy seems perfectly reasonable. The whole thing is just sad, though.
posted by mdn at 6:19 AM on January 4, 2007
this person is mentally equal to a 3 month old baby. HOw could they possibly "infantilize" her? She is medically an infant in a 9 year old's body. Speaking of a need for dignity and autonomy seems to me to entirely miss the facts of the matter: this person is unable to move herself, interact, recognize other people, communicate, or have any sort of meaningful life.
I am sure it is excruciating when it is your own child, but at a distance I see no reason why euthanasia would not be acceptable, and if that is too harsh for these parents, allowing them to prevent menses & possible pregnancy seems perfectly reasonable. The whole thing is just sad, though.
posted by mdn at 6:19 AM on January 4, 2007
obol: I can't answer the "why" they took the chance with a 3rd child. Maybe they were heartened and emboldened by their 2nd child. Maybe they thought God had already taught them their lesson and would take care of them from then on because they prayed hard enough. (I'm not snarking; they are very religious.) I do know they won't be having any more. (surgery)
posted by LordSludge at 8:12 AM on January 4, 2007
posted by LordSludge at 8:12 AM on January 4, 2007
The permapuppies link is a hoax, right? Seriously, if they can do this with a human, how far away are we from marketing this to dog and cat and fluffy baby bunny owners? I can see this procedure becoming very popular, especially in societies which are less progressive on animal rights. Think of how much the vain nouveau riche housewives of Orange County or Shanghai would pay to keep their little precious precious all cute and cuddly with just a few injections a week.
posted by Kraftmatic Adjustable Cheese at 8:13 AM on January 4, 2007
posted by Kraftmatic Adjustable Cheese at 8:13 AM on January 4, 2007
The permapuppies link is a hoax, right?
Appears to be an ad for Michael Crichton's next book.
posted by jacquilynne at 8:52 AM on January 4, 2007
Appears to be an ad for Michael Crichton's next book.
posted by jacquilynne at 8:52 AM on January 4, 2007
Speaking of a need for dignity and autonomy seems to me to entirely miss the facts of the matter...
In fact, I think this could lead to more dignity and autonomy for Ashley. She'll receive better care because of it. It would be lovely if every disabled person had unlimited access to assistants, and if the parents had all the respite care they needed, but the world isn't like that. Yet.
Maybe people who are so irate about what Ashley's parents chose could spend some of their spare time (which is a resource her parents don't have) working to make sure disabled people have everything they need to lead dignified, enjoyable, and meaningful lives. Volunteer to work with disabled people, write to your elected officials, lobby for better funding for special education... quit picking on her parents for doing the best they can to look after their daughter.
posted by The corpse in the library at 9:28 AM on January 4, 2007
In fact, I think this could lead to more dignity and autonomy for Ashley. She'll receive better care because of it. It would be lovely if every disabled person had unlimited access to assistants, and if the parents had all the respite care they needed, but the world isn't like that. Yet.
Maybe people who are so irate about what Ashley's parents chose could spend some of their spare time (which is a resource her parents don't have) working to make sure disabled people have everything they need to lead dignified, enjoyable, and meaningful lives. Volunteer to work with disabled people, write to your elected officials, lobby for better funding for special education... quit picking on her parents for doing the best they can to look after their daughter.
posted by The corpse in the library at 9:28 AM on January 4, 2007
and therefore the decision to limit her growth and development is morally equivelant to docking the ears of a dobermann.
What an idiotic troll.
You cannot be serious. Unless you have given birth to a Doberman.
posted by tkchrist at 10:36 AM on January 4, 2007 [1 favorite]
What an idiotic troll.
You cannot be serious. Unless you have given birth to a Doberman.
posted by tkchrist at 10:36 AM on January 4, 2007 [1 favorite]
By that logic, an actual 3 month old is also not a person.
posted by jacquilynne at 10:59 AM on January 4, 2007
posted by jacquilynne at 10:59 AM on January 4, 2007
LordSludge, I just wanted to say my heart is going out to you and your family. I have two children, and I cannot even begin to imagine going through that and coming out the other side a sane person.
Again, my love to you and yours.
posted by thekilgore at 11:06 AM on January 4, 2007
Again, my love to you and yours.
posted by thekilgore at 11:06 AM on January 4, 2007
In fact, I think this could lead to more dignity and autonomy for Ashley.
...the decision to limit her growth and development is morally equivelant to docking the ears of a dobermann.
What an idiotic troll. You cannot be serious. Unless you have given birth to a Doberman.
I will note, as a vegetarian, that I have to agree with the above poster. Pigs, cows and dogs are orders of magnitude more intelligent than Ashley. If you are offended by the thought of ending her life or controlling her development, you should be at least as concerned about similar interventions in the lives of animals. You note the sentimentalist argument, that giving birth to this creature alters the matter, but that can only really apply for the parents themselves, or not, depending on their individual moral philosophies. There is no universal reason why giving birth should bestow greater importance on Ashley than on a smart and good natured animal companion.
posted by mdn at 11:31 AM on January 4, 2007 [1 favorite]
...the decision to limit her growth and development is morally equivelant to docking the ears of a dobermann.
What an idiotic troll. You cannot be serious. Unless you have given birth to a Doberman.
I will note, as a vegetarian, that I have to agree with the above poster. Pigs, cows and dogs are orders of magnitude more intelligent than Ashley. If you are offended by the thought of ending her life or controlling her development, you should be at least as concerned about similar interventions in the lives of animals. You note the sentimentalist argument, that giving birth to this creature alters the matter, but that can only really apply for the parents themselves, or not, depending on their individual moral philosophies. There is no universal reason why giving birth should bestow greater importance on Ashley than on a smart and good natured animal companion.
posted by mdn at 11:31 AM on January 4, 2007 [1 favorite]
After a great start, this thread has turned into unintentional parody. Fascinating.
posted by Ynoxas at 12:36 PM on January 4, 2007
posted by Ynoxas at 12:36 PM on January 4, 2007
This story has been picked up by the BBC today, appaently.
posted by eparchos at 12:40 PM on January 4, 2007
posted by eparchos at 12:40 PM on January 4, 2007
I still think we should go with Saucy Intruder's plan and just kill anything that can't respond to us when asked if they are in pain, rather than sentence the poor creatures to lives that might possibly be painful (despite having no indication that this is the case).
Simply "appearing" to not be in any discomfort is not good enough; unless we get a definitive "yes" or "no" response, we must err on the side of caution and end their lives. This includes those that are mentally handicapped, physically handicapped (how can you trust a quadriplegic to know whether or not he or she is in pain? You can't!), all manner of animals (primates who can communicate via Sign Language are given two chances to answer, or else we provide them with the sweet release of death), and the fictional character and my personal idol, Dr. Gregory House; since he is in perpetual agony, we have no choice but to do the right thing. The humane thing.
When in doubt, snuff 'em out.
[/extreme sarcasm]
posted by CitrusFreak12 at 1:17 PM on January 4, 2007
Simply "appearing" to not be in any discomfort is not good enough; unless we get a definitive "yes" or "no" response, we must err on the side of caution and end their lives. This includes those that are mentally handicapped, physically handicapped (how can you trust a quadriplegic to know whether or not he or she is in pain? You can't!), all manner of animals (primates who can communicate via Sign Language are given two chances to answer, or else we provide them with the sweet release of death), and the fictional character and my personal idol, Dr. Gregory House; since he is in perpetual agony, we have no choice but to do the right thing. The humane thing.
When in doubt, snuff 'em out.
[/extreme sarcasm]
posted by CitrusFreak12 at 1:17 PM on January 4, 2007
Woops, forgot to include infants (They cry ALL THE TIME, what else could it be?) and just to clarify, pigs, cows, and dogs are included as well.
posted by CitrusFreak12 at 1:19 PM on January 4, 2007
posted by CitrusFreak12 at 1:19 PM on January 4, 2007
Just chiming in to point out that b1tr0t's "idiotic troll" resembles some of the positions espoused by bioethicist Peter Singer. They're provocative ideas, to say the least, and even if you don't agree with them, they're worth considering in developing your views on abortion, euthanasia, and the ethics of human/animal interactions. We've discussed Singer previously.
posted by mr_roboto at 1:46 PM on January 4, 2007
posted by mr_roboto at 1:46 PM on January 4, 2007
By that logic, an actual 3 month old is also not a person. Sure, but an actual 3 month old can reasonably be expected to develop into a person.
I advise you to not go into the baby sitting business.
I will note, as a vegetarian, that I have to agree with the above poster.
I will note, as a thinking person, what frigg'n difference does it make what you eat?
It has no bearing on this at all. Other than to provide one with a stump to potentially declare ones self-proclaimed moral superiority.
...You note the sentimentalist argument, that giving birth to this creature alters the matter, but that can only really apply for the parents themselves...
Uh. Yes. The only people who MATTER are the parents themselves. The entire point of this post. And the parents are entitled to have "sentimentality" about a child.
To expect parents to demote their feelings and moral obligations for the life of their own daughter to a level "equivalent to docking the ears of a Doberman" is fucking asinine, and lacking in the necessary compassion to even partially appreciate the horrible dilemma these people are facing.
Ynoxas is right.
posted by tkchrist at 2:33 PM on January 4, 2007
I advise you to not go into the baby sitting business.
I will note, as a vegetarian, that I have to agree with the above poster.
I will note, as a thinking person, what frigg'n difference does it make what you eat?
It has no bearing on this at all. Other than to provide one with a stump to potentially declare ones self-proclaimed moral superiority.
...You note the sentimentalist argument, that giving birth to this creature alters the matter, but that can only really apply for the parents themselves...
Uh. Yes. The only people who MATTER are the parents themselves. The entire point of this post. And the parents are entitled to have "sentimentality" about a child.
To expect parents to demote their feelings and moral obligations for the life of their own daughter to a level "equivalent to docking the ears of a Doberman" is fucking asinine, and lacking in the necessary compassion to even partially appreciate the horrible dilemma these people are facing.
Ynoxas is right.
posted by tkchrist at 2:33 PM on January 4, 2007
Peter Singer is often cited as "provocative" which has always been interesting to me - when I first came across him (mid 90s, I think), I had already drawn most of the conclusions he did, and I just thought, "finally, a guy with some common sense." Because it really seems like the most straightforward answer you could possibly reach: degree of self-awareness combined with degree of desire for continuance of said self-awareness (simply put called pleasure or pain, though it need not be taken as flatly quantifiable immediate physical enjoyment or difficulty) are the factors which should be taken into consideration when making choices about allowing and/or nurturing said awareness.
Singer gets a little too blunt & utilitarian at times, but all in all he is very reasonable. That people will project their own experience onto Ashley and bemoan the loss of "dignity" her inability to menstruate has caused, but be completely unperturbed by beef cattle living in their own excrement, is honestly bizarre to me. It's true we can never be completely sure of what is going on "inside" other creatures - maybe Ashley is more aware than her doctors believe (though the level of tests available these days I would bet they are fairly accurate) and maybe dogs are really automatons. But based on the knowledge we have, based on the level of communication we can achieve, based on scientific data available, it is far more likely the dog is a higher consciousness. You may believe humans are special for some other reason than self-awareness, but for many of us that's the key ingredient.
posted by mdn at 2:38 PM on January 4, 2007 [1 favorite]
Singer gets a little too blunt & utilitarian at times, but all in all he is very reasonable. That people will project their own experience onto Ashley and bemoan the loss of "dignity" her inability to menstruate has caused, but be completely unperturbed by beef cattle living in their own excrement, is honestly bizarre to me. It's true we can never be completely sure of what is going on "inside" other creatures - maybe Ashley is more aware than her doctors believe (though the level of tests available these days I would bet they are fairly accurate) and maybe dogs are really automatons. But based on the knowledge we have, based on the level of communication we can achieve, based on scientific data available, it is far more likely the dog is a higher consciousness. You may believe humans are special for some other reason than self-awareness, but for many of us that's the key ingredient.
posted by mdn at 2:38 PM on January 4, 2007 [1 favorite]
(on post-view)
Uh. Yes. The only people who MATTER are the parents themselves. The entire point of this post. And the parents are entitled to have "sentimentality" about a child.
I think you misunderstood something I said - I absolutely do not find anything wrong with the parents actions in this case, and did not mean to imply otherwise. I was only pointing out that anyone who thinks what they're doing is morally questionable is demanding a status for Ashley that is inappropriate. It is not wrong to infantilize an infant.
As for the broader sentimentalist vs. utilitarian question, what it comes down to is that I am pro-choice about this issue, as I am about vegetarianism, and yes, abortion. That is, I do not think that universal state laws should decide these matters as, like you say, "the only people who MATTER are the (principles)". fetuses, brain damaged patients and animals - in that order, IMO, from least deserving to most deserving of rights - should be considered not as full moral agents with full protection, but as creatures over whom we have custody, and whose welfare can be left to individual judgment so long as basic humane guidelines are met when necessary.
posted by mdn at 2:47 PM on January 4, 2007 [1 favorite]
Uh. Yes. The only people who MATTER are the parents themselves. The entire point of this post. And the parents are entitled to have "sentimentality" about a child.
I think you misunderstood something I said - I absolutely do not find anything wrong with the parents actions in this case, and did not mean to imply otherwise. I was only pointing out that anyone who thinks what they're doing is morally questionable is demanding a status for Ashley that is inappropriate. It is not wrong to infantilize an infant.
As for the broader sentimentalist vs. utilitarian question, what it comes down to is that I am pro-choice about this issue, as I am about vegetarianism, and yes, abortion. That is, I do not think that universal state laws should decide these matters as, like you say, "the only people who MATTER are the (principles)". fetuses, brain damaged patients and animals - in that order, IMO, from least deserving to most deserving of rights - should be considered not as full moral agents with full protection, but as creatures over whom we have custody, and whose welfare can be left to individual judgment so long as basic humane guidelines are met when necessary.
posted by mdn at 2:47 PM on January 4, 2007 [1 favorite]
That is, I do not think that universal state laws should decide these matters as, like you say, "the only people who MATTER are the (principles)".
Ok. I apologize. We may exist on the same planet yet again.
After seeing my wife go through this with her sister, its hard to accept people who defer to a set philosophical script about what or what is not moral. Though in this case involves a child that has never developed, never achieved ANY independence, and never fulfilled a "life" and never will - ever more complicating the issue for the parents.
I also believe this is a "choice" issue. One where the larger political community had better butt out in 99% of the cases.
posted by tkchrist at 3:05 PM on January 4, 2007
Ok. I apologize. We may exist on the same planet yet again.
After seeing my wife go through this with her sister, its hard to accept people who defer to a set philosophical script about what or what is not moral. Though in this case involves a child that has never developed, never achieved ANY independence, and never fulfilled a "life" and never will - ever more complicating the issue for the parents.
I also believe this is a "choice" issue. One where the larger political community had better butt out in 99% of the cases.
posted by tkchrist at 3:05 PM on January 4, 2007
Popping in late but have to say that this
the idea of "keeping someone a child" has probably occured to any of us who are parents. Wouldn't it be nice to freeze time so our little ones don't have to grow up and leave us?
To force our children to stay small, or even stay home after growing up, is selfish and unnatural, and I think this situation triggers that instinct.
...was pretty disturbing. There's an "oh, isn't he charming at 4" or "isn't that toddler sweet?" notion, but it's never led me to have a secret desire to "force them to stay small" or "force them to stay home after growing up."
I think Ashley's parents have done the right thing. The ethics panel of (how many, 40?) doctors who agreed with them are a better judge than me of whether this is ethical and humane.
posted by pineapple at 8:16 PM on January 4, 2007
the idea of "keeping someone a child" has probably occured to any of us who are parents. Wouldn't it be nice to freeze time so our little ones don't have to grow up and leave us?
To force our children to stay small, or even stay home after growing up, is selfish and unnatural, and I think this situation triggers that instinct.
...was pretty disturbing. There's an "oh, isn't he charming at 4" or "isn't that toddler sweet?" notion, but it's never led me to have a secret desire to "force them to stay small" or "force them to stay home after growing up."
I think Ashley's parents have done the right thing. The ethics panel of (how many, 40?) doctors who agreed with them are a better judge than me of whether this is ethical and humane.
posted by pineapple at 8:16 PM on January 4, 2007
gah! i'm so embarrassed. I meant "principals". I can't believe I made such a classic error. I meant the only people who matter in situations like this are those directly affected, and therefore it is not up to broader society to draw absolute lines...
also I forgot an apostrophe on "parents'."
hoo boy.
posted by mdn at 6:26 AM on January 5, 2007
also I forgot an apostrophe on "parents'."
hoo boy.
posted by mdn at 6:26 AM on January 5, 2007
This is horrible--they did all this for their own convenience, not to make the girl's life better. Children are not pets or "pillow angels" or dolls--even severely disabled ones should be allowed to grow and experience life. My heart aches for the parents but how dare they do this---it's all for themselves and not at all for her.
posted by amberglow at 6:34 AM on January 5, 2007
posted by amberglow at 6:34 AM on January 5, 2007
there's a really long and evil and sordid history of sterilizing and neutering disabled people--if i was an activist i'd be furious about this.
posted by amberglow at 6:44 AM on January 5, 2007
posted by amberglow at 6:44 AM on January 5, 2007
How is it your business amberglow? Did you read the thread? To the extent this girl can "experience life" at all, this will increase the quality of it.
In general I don't think it is fair to let severely retarded people experience puberty or sexuality, since there is broad social consensus that sex requires consent and there is a prerequisite level of judgement needed for consent. This is why we have age of consent laws. These urges can only frustrate or betray them. Likely needlessly putting them at multiple times the risk of abuse by others (especially after "the parents die"). Guardians - not government, not me, not amberglow, not "activists" - together with doctors need the right to make these decisions.
posted by dgaicun at 7:31 AM on January 5, 2007
In general I don't think it is fair to let severely retarded people experience puberty or sexuality, since there is broad social consensus that sex requires consent and there is a prerequisite level of judgement needed for consent. This is why we have age of consent laws. These urges can only frustrate or betray them. Likely needlessly putting them at multiple times the risk of abuse by others (especially after "the parents die"). Guardians - not government, not me, not amberglow, not "activists" - together with doctors need the right to make these decisions.
posted by dgaicun at 7:31 AM on January 5, 2007
there's a really long and evil and sordid history of sterilizing and neutering disabled people--if i was an activist i'd be furious about this.
If you were an activist you'd have found a dozen things to be furious about before your shower this morning.
Disabled advocates are justified in feeling defensive about anything that smacks of eugenics, but this tends to lead to absurd overreactions, as in this case. This family has chosen to lighten a massive, lifelong burden at the expense of the normal development of someone who has no idea what normal development is. That's an outrage by your standards? Whatever.
As for this:
what happens when the parents die?
Then her siblings, who will themselves be middle-aged and who are only in this situation through an accident of birth, will be responsible for her. At which point the wisdom of their parents' decision will be self-evident.
posted by Epenthesis at 7:37 AM on January 5, 2007
If you were an activist you'd have found a dozen things to be furious about before your shower this morning.
Disabled advocates are justified in feeling defensive about anything that smacks of eugenics, but this tends to lead to absurd overreactions, as in this case. This family has chosen to lighten a massive, lifelong burden at the expense of the normal development of someone who has no idea what normal development is. That's an outrage by your standards? Whatever.
As for this:
what happens when the parents die?
Then her siblings, who will themselves be middle-aged and who are only in this situation through an accident of birth, will be responsible for her. At which point the wisdom of their parents' decision will be self-evident.
posted by Epenthesis at 7:37 AM on January 5, 2007
amberglow : "even severely disabled ones should be allowed to grow and experience life."
Which aspects of experiencing life that they're preventing are you referring to? Growing breasts? Great fun if you have sex, and very useful if you're going to nurse a baby, but she wouldn't do either. Menstruating? I've seldom heard people talk about how much they enjoy menstruation. But, again, very useful if you're going to have children, which she wouldn't do anyway. Growing taller? Wonderful for finding a mate, getting to ride on the big rollercoasters, finding clothes you like...all of which she wouldn't do anyway.
I think you're thinking of "growing and experiencing life" in terms of how someone who can function in some way in society would experience them. For someone permanently with the mind of a three month old, none of those physical changes would result in the positive experiences that you're associating with them. So you're basically saying "even though she can't derive any joy from them, she should be allowed to suffer the drawbacks that growth entails".
amberglow : "what happens when the parents die?"
The same thing that would happen if they didn't do this, and they died. It's not like by stunting her growth at 9 years old that she will live forever.
amberglow : "there's a really long and evil and sordid history of sterilizing and neutering disabled people"
Yes, and I think it's clouding your perceptions of this particular case.
posted by Bugbread at 7:38 AM on January 5, 2007
Which aspects of experiencing life that they're preventing are you referring to? Growing breasts? Great fun if you have sex, and very useful if you're going to nurse a baby, but she wouldn't do either. Menstruating? I've seldom heard people talk about how much they enjoy menstruation. But, again, very useful if you're going to have children, which she wouldn't do anyway. Growing taller? Wonderful for finding a mate, getting to ride on the big rollercoasters, finding clothes you like...all of which she wouldn't do anyway.
I think you're thinking of "growing and experiencing life" in terms of how someone who can function in some way in society would experience them. For someone permanently with the mind of a three month old, none of those physical changes would result in the positive experiences that you're associating with them. So you're basically saying "even though she can't derive any joy from them, she should be allowed to suffer the drawbacks that growth entails".
amberglow : "what happens when the parents die?"
The same thing that would happen if they didn't do this, and they died. It's not like by stunting her growth at 9 years old that she will live forever.
amberglow : "there's a really long and evil and sordid history of sterilizing and neutering disabled people"
Yes, and I think it's clouding your perceptions of this particular case.
posted by Bugbread at 7:38 AM on January 5, 2007
And just so you don't think I'm being pointlessly contrarian or intentionally hard-hearted, amberglow, when I first read about this (in a much more pointed, much less balanced article somewhere on the net), I got chock-full riled up and outraged at what the parents were doing...until I read more about the specifics of the case. Then I realized that I was letting my initial impressions and general feelings about treatment of the disabled blind me to the fact that this case really isn't the same as them, and my outrage was displaced.
posted by Bugbread at 7:42 AM on January 5, 2007
posted by Bugbread at 7:42 AM on January 5, 2007
The only people who MATTER are the parents themselves.
I think you forgot to include a relevant third person in the equation.
Whether or not you think that the medical justification is a valid pretext for these surgeries and drug treatments, the ultimate fact is that there is a sentimental, emotional overtone to the whole thing. The sort of nonsense spewed here by the parents - "pillow angel," "including her in family activities," etc. - is deeply disturbing.
To be sure - and to help Citrusfreak12's calm his OMG LIFE IS PRECIOUS histrionics a bit - while euthanasia is humane, I think it's ultimately less humane than letting her grow and proving pallative care. The slicing-and-dicing compromise that the parents have invented is less ethical and much less moral than either of these two extremes.
posted by Saucy Intruder at 7:47 AM on January 5, 2007
I think you forgot to include a relevant third person in the equation.
Whether or not you think that the medical justification is a valid pretext for these surgeries and drug treatments, the ultimate fact is that there is a sentimental, emotional overtone to the whole thing. The sort of nonsense spewed here by the parents - "pillow angel," "including her in family activities," etc. - is deeply disturbing.
To be sure - and to help Citrusfreak12's calm his OMG LIFE IS PRECIOUS histrionics a bit - while euthanasia is humane, I think it's ultimately less humane than letting her grow and proving pallative care. The slicing-and-dicing compromise that the parents have invented is less ethical and much less moral than either of these two extremes.
posted by Saucy Intruder at 7:47 AM on January 5, 2007
People are misusing the quote "pillow angel", including the first article.
They call her their pillow angel because that is all she ever will be. Unlike the parents of other daughters, she will never be their "running around and playing angel", "performing in the school play angel", "graduating from high school angel", "marry and have children angel", "care for them in their old age angel". If she could be any of these things, do you not think they would trade in an instant?
A pillow angel is all she will ever be - and they have come to terms with that, and love her all the same. I don't know if I could be that brave.
And what they want to keep is their ability to make her happy. To cuddle her and rock her, to lift her with their arms gently. If she is truly three months old mentally, these are the most desirable things to her. Her happiness is at stake, and her parents have chosen the best path for it.
posted by jb at 8:05 AM on January 5, 2007
They call her their pillow angel because that is all she ever will be. Unlike the parents of other daughters, she will never be their "running around and playing angel", "performing in the school play angel", "graduating from high school angel", "marry and have children angel", "care for them in their old age angel". If she could be any of these things, do you not think they would trade in an instant?
A pillow angel is all she will ever be - and they have come to terms with that, and love her all the same. I don't know if I could be that brave.
And what they want to keep is their ability to make her happy. To cuddle her and rock her, to lift her with their arms gently. If she is truly three months old mentally, these are the most desirable things to her. Her happiness is at stake, and her parents have chosen the best path for it.
posted by jb at 8:05 AM on January 5, 2007
Saucy Intruder : "The sort of nonsense spewed here by the parents - 'pillow angel,' 'including her in family activities,' etc. - is deeply disturbing. "
If you've been living with someone with a 3 month old's mentality for 9 years, I'd find it far more disturbing if one didn't have some sort of terms of endearment that also tried to cast the negative situation in a more positive light.
And what on earth makes "including her in family activities" nonsense? My nine-month old (healthy and hale) eats dinner with us, sleeps with us, and bathes with us. We all visited my parents for Christmas. He is being included in family activities. No, he isn't playing Scrabble or helping build a dog house yet, but he's definitely being included in family activities.
Would you rather Ashley's parents just toss her in a back room of the house and occasionally shove in some food, instead of including her? Or is it that you're fine with including her in family activities, but you don't think they should say that publicly?
posted by Bugbread at 8:05 AM on January 5, 2007
If you've been living with someone with a 3 month old's mentality for 9 years, I'd find it far more disturbing if one didn't have some sort of terms of endearment that also tried to cast the negative situation in a more positive light.
And what on earth makes "including her in family activities" nonsense? My nine-month old (healthy and hale) eats dinner with us, sleeps with us, and bathes with us. We all visited my parents for Christmas. He is being included in family activities. No, he isn't playing Scrabble or helping build a dog house yet, but he's definitely being included in family activities.
Would you rather Ashley's parents just toss her in a back room of the house and occasionally shove in some food, instead of including her? Or is it that you're fine with including her in family activities, but you don't think they should say that publicly?
posted by Bugbread at 8:05 AM on January 5, 2007
The sort of nonsense spewed here by the parents - "pillow angel," "including her in family activities," etc. - is deeply disturbing.
completely. And it tells us a lot about how they see their daughter and how they want her to appear for now and the rest of her life.
posted by amberglow at 8:06 AM on January 5, 2007
completely. And it tells us a lot about how they see their daughter and how they want her to appear for now and the rest of her life.
posted by amberglow at 8:06 AM on January 5, 2007
Amberglow, I have to respectfully disagree. In this case, the parents are right, and Bramoire's comment is spot on - "The support for carers of the disabled is pitiful, they deserve a medal not criticism." And, self-link.
posted by tizzie at 8:10 AM on January 5, 2007 [1 favorite]
posted by tizzie at 8:10 AM on January 5, 2007 [1 favorite]
From the parents' website, in response to the issue of sterilizaton:
"There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, “sterilization” is a side effect of the “Ashley Treatment” and not its intent."
The law has already thought about and differentiated between the severely mentally disabled and other disabled people who have the capacity to chose to voluntarily have children. And frankly, I think this child's right to be comfortable by far trumps any reproductive rights which she could never voluntarily excercise in the first place.
She does have rights - the right to be as comfortable as possible, and for her that means being able to be lifted and rocked, and not to have the discomforts of being a fertile woman - which are considerable, as I sit here, having yet another cramp induced backache.
posted by jb at 8:18 AM on January 5, 2007
"There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, “sterilization” is a side effect of the “Ashley Treatment” and not its intent."
The law has already thought about and differentiated between the severely mentally disabled and other disabled people who have the capacity to chose to voluntarily have children. And frankly, I think this child's right to be comfortable by far trumps any reproductive rights which she could never voluntarily excercise in the first place.
She does have rights - the right to be as comfortable as possible, and for her that means being able to be lifted and rocked, and not to have the discomforts of being a fertile woman - which are considerable, as I sit here, having yet another cramp induced backache.
posted by jb at 8:18 AM on January 5, 2007
amberglow : "And it tells us a lot about how they see their daughter and how they want her to appear for now and the rest of her life."
They see her as an angel (pretty darn common term of endearment for little girls), and have attached the word "pillow" as it describes her situation. Much like my mom nicknamed my kid "mocosin" (translates to roughly "l'il snotty") when he had a cold. So, yeah, they see her as a kid that they love whose primary attribute is lying down. Would you rather the more pragmatic "our stunted child"? Or perhaps "l'il miss soccer champion"? Sure, they could have just nicknamed her "sweety". And my mom could have nicknamed my baby "tiger" when he was three months old, instead of "meoncillo" (translates roughly to "l'il pee-er") because he peed so much. Does that make my mom some sort of evil grandparent?
As for "how they want her to appear for the rest of her life", it tells us a lot about the baggage you're bringing to this conversation that you are assuming that they are doing this in order to preserve their own mental image of her, instead of for the reasons they have stated.
Note: I don't actually believe it tells us a lot about you that you made that assumption. I am just endlessly irked by the MetaFilter "that is very telling" argument, which implies that a situation indicates something when in reality it's just that the person using the "that's very telling" argument is making an assumption but trying to move the responsibility of making that assumption off their own shoulders and onto the person they're making the assumption about.
Sure, my defenses of their actions, and of their justifications, is an assumption. But I'll gladly admit that: Because their arguments make sense, I am assuming they are sincere. They may not be. They could be total assholes using a clever smokescreen. That they are not is an assumption I am making, not something that they are telling.
posted by Bugbread at 8:26 AM on January 5, 2007
They see her as an angel (pretty darn common term of endearment for little girls), and have attached the word "pillow" as it describes her situation. Much like my mom nicknamed my kid "mocosin" (translates to roughly "l'il snotty") when he had a cold. So, yeah, they see her as a kid that they love whose primary attribute is lying down. Would you rather the more pragmatic "our stunted child"? Or perhaps "l'il miss soccer champion"? Sure, they could have just nicknamed her "sweety". And my mom could have nicknamed my baby "tiger" when he was three months old, instead of "meoncillo" (translates roughly to "l'il pee-er") because he peed so much. Does that make my mom some sort of evil grandparent?
As for "how they want her to appear for the rest of her life", it tells us a lot about the baggage you're bringing to this conversation that you are assuming that they are doing this in order to preserve their own mental image of her, instead of for the reasons they have stated.
Note: I don't actually believe it tells us a lot about you that you made that assumption. I am just endlessly irked by the MetaFilter "that is very telling" argument, which implies that a situation indicates something when in reality it's just that the person using the "that's very telling" argument is making an assumption but trying to move the responsibility of making that assumption off their own shoulders and onto the person they're making the assumption about.
Sure, my defenses of their actions, and of their justifications, is an assumption. But I'll gladly admit that: Because their arguments make sense, I am assuming they are sincere. They may not be. They could be total assholes using a clever smokescreen. That they are not is an assumption I am making, not something that they are telling.
posted by Bugbread at 8:26 AM on January 5, 2007
bugbread, you win the Missing the Point Completely Award. Congrats.
There's nothing wrong with including anyone, no matter how disabled, in family activities. But it makes for a piss-poor justification for a hysterectomy, double mastectomy, and hormone treatments.
posted by Saucy Intruder at 8:33 AM on January 5, 2007
There's nothing wrong with including anyone, no matter how disabled, in family activities. But it makes for a piss-poor justification for a hysterectomy, double mastectomy, and hormone treatments.
posted by Saucy Intruder at 8:33 AM on January 5, 2007
Other benefits for Ashley, again from her parents (who spent the most time with her of anyone):
"As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints."
As well as reducing her susceptibility to bed sores, bladder infections and pneumonia. (also noted above).
posted by jb at 8:33 AM on January 5, 2007
"As a result, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings (for example, in the family room, backyard, swing, walks, bathtub, etc.) instead of lying down in her bed staring at TV (or the ceiling) all day long. In addition, the increase in Ashley’s movement results in better blood circulation, GI functioning (including digestion, passing gas), stretching, and motion of her joints."
As well as reducing her susceptibility to bed sores, bladder infections and pneumonia. (also noted above).
posted by jb at 8:33 AM on January 5, 2007
Three generations of imbeciles are enough.
I'd like to hear anyone's justification as to why, 80 years after Buck v. Bell, they would condemn the Commonwealth of Virginia for forcibly sterilizing a retarded woman but give that person's own parents a free pass.
posted by Saucy Intruder at 8:37 AM on January 5, 2007
I'd like to hear anyone's justification as to why, 80 years after Buck v. Bell, they would condemn the Commonwealth of Virginia for forcibly sterilizing a retarded woman but give that person's own parents a free pass.
posted by Saucy Intruder at 8:37 AM on January 5, 2007
Hmm, let's try this again: Three generations of imbeciles are enough.
posted by Saucy Intruder at 8:42 AM on January 5, 2007
posted by Saucy Intruder at 8:42 AM on January 5, 2007
maxwelton writes "And who doesn't like a tall woman? That's insanity, there."
Word.
amberglow writes "even severely disabled ones should be allowed to grow and experience life"
But she won't grow and she won't experience life. Or at least the procedure won't have changed her experience of life except to make her easier to care for, reduce the chance of chronic conditions like bedsores and remove cyclic pain.
amberglow writes "what happens when the parents die?"
That is a dilly ain't it, especially considering the realities of the American healthcare system.
posted by Mitheral at 8:45 AM on January 5, 2007
Word.
amberglow writes "even severely disabled ones should be allowed to grow and experience life"
But she won't grow and she won't experience life. Or at least the procedure won't have changed her experience of life except to make her easier to care for, reduce the chance of chronic conditions like bedsores and remove cyclic pain.
amberglow writes "what happens when the parents die?"
That is a dilly ain't it, especially considering the realities of the American healthcare system.
posted by Mitheral at 8:45 AM on January 5, 2007
Saucy Intruder - both the articles and the blog explain why they chose the treatments they did.
The hysterectomy: to relieve her of menstrual cramps, and other discomforts. The only purpose for a uterus is to have babies (trust me, I have one, and that is all it is good for, other than pain and annoying blood and sometimes anemia). She can never have a baby without being raped.
The mastectomy: So that she could be more comfortable lying down, and avoid the large breasts and possibility of breast cancer that runs in her family. The only purpose for breasts is to feed babies, or to be sexually attractive. She cannot have a baby, and being sexually atttractive is pointless for her, since she cannot consent.
The hormone treatments: to reduce her size, so that that they can continue to lift her. She gets pleasure from being lifted and carried about.
If you had read the article or the blog, you would have understood that these procedures were all done for her increased comfort.
She is a three month old mentally. She has feelings and emotions - but they are not those of an adult. She will never grow up to regret not having children or not being able to wear a strapless dress. What infant wants to wear a sexy bra?
But every infant wants to be held and lifted by their parents. I remember being 5 and being really upset when my mom wouldn't lift me as much any more. I delighted in being carried around for her.
Her parents have traded sexual and reproductive rights which she will NEVER be able to excercise in exchange for making her comfortable and keeping the things she does enjoy.
-------------------------
On preview: Saucy Intruder, did you not read the quote I just posted? The law does not apply to Ashley, because she is not simply mentally disabled. She cannot and will never be able to consent to sexual relations.
Are you saying we should make her uncomfortable just to keep her right to bear a child in case anyone choses to rape her?
posted by jb at 8:46 AM on January 5, 2007 [1 favorite]
The hysterectomy: to relieve her of menstrual cramps, and other discomforts. The only purpose for a uterus is to have babies (trust me, I have one, and that is all it is good for, other than pain and annoying blood and sometimes anemia). She can never have a baby without being raped.
The mastectomy: So that she could be more comfortable lying down, and avoid the large breasts and possibility of breast cancer that runs in her family. The only purpose for breasts is to feed babies, or to be sexually attractive. She cannot have a baby, and being sexually atttractive is pointless for her, since she cannot consent.
The hormone treatments: to reduce her size, so that that they can continue to lift her. She gets pleasure from being lifted and carried about.
If you had read the article or the blog, you would have understood that these procedures were all done for her increased comfort.
She is a three month old mentally. She has feelings and emotions - but they are not those of an adult. She will never grow up to regret not having children or not being able to wear a strapless dress. What infant wants to wear a sexy bra?
But every infant wants to be held and lifted by their parents. I remember being 5 and being really upset when my mom wouldn't lift me as much any more. I delighted in being carried around for her.
Her parents have traded sexual and reproductive rights which she will NEVER be able to excercise in exchange for making her comfortable and keeping the things she does enjoy.
-------------------------
On preview: Saucy Intruder, did you not read the quote I just posted? The law does not apply to Ashley, because she is not simply mentally disabled. She cannot and will never be able to consent to sexual relations.
Are you saying we should make her uncomfortable just to keep her right to bear a child in case anyone choses to rape her?
posted by jb at 8:46 AM on January 5, 2007 [1 favorite]
That is, to bear a child which she will never understand that she is bearing, and never understand what is even happening except that she is in pain.
posted by jb at 8:47 AM on January 5, 2007
posted by jb at 8:47 AM on January 5, 2007
Saucy Intruder : "bugbread, you win the Missing the Point Completely Award. Congrats.
There's nothing wrong with including anyone, no matter how disabled, in family activities. But it makes for a piss-poor justification for a hysterectomy, double mastectomy, and hormone treatments."
Thanks for the award, and you're right, I completely did miss your point. Sorry.
Regarding "piss-poor", well, sure, it doesn't stand up there with "if we don't do it, she will die", but considering how little Ashley really has in her life, I'd wager that taking part in family activities is a disproportionately huge part of it, so I don't think it's as poor a justification as you think it is.
posted by Bugbread at 8:54 AM on January 5, 2007
There's nothing wrong with including anyone, no matter how disabled, in family activities. But it makes for a piss-poor justification for a hysterectomy, double mastectomy, and hormone treatments."
Thanks for the award, and you're right, I completely did miss your point. Sorry.
Regarding "piss-poor", well, sure, it doesn't stand up there with "if we don't do it, she will die", but considering how little Ashley really has in her life, I'd wager that taking part in family activities is a disproportionately huge part of it, so I don't think it's as poor a justification as you think it is.
posted by Bugbread at 8:54 AM on January 5, 2007
jb : "The only purpose for a uterus is to have babies (trust me, I have one, and that is all it is good for, other than pain and annoying blood and sometimes anemia). She can never have a baby without being raped. "
I should probably stop myself from being excessively ascerbic, but the spirit has possessed my fingers:
There would appear to be people here who believe that a person should be made to suffer menstrual cramps, because preventing that from happening might take away the benefits of a uterus, namely producing offspring if raped. As pro-life as this may sound, oddly, in this case, the people making this argument are far more likely to be pro-choice.
posted by Bugbread at 9:01 AM on January 5, 2007
I should probably stop myself from being excessively ascerbic, but the spirit has possessed my fingers:
There would appear to be people here who believe that a person should be made to suffer menstrual cramps, because preventing that from happening might take away the benefits of a uterus, namely producing offspring if raped. As pro-life as this may sound, oddly, in this case, the people making this argument are far more likely to be pro-choice.
posted by Bugbread at 9:01 AM on January 5, 2007
I still find the Buck v. Bell decission quite stupid. Why much we let retards have kids at all?
posted by jeffburdges at 9:10 AM on January 5, 2007
posted by jeffburdges at 9:10 AM on January 5, 2007
Saucy Intruder : "I'd like to hear anyone's justification as to why, 80 years after Buck v. Bell, they would condemn the Commonwealth of Virginia for forcibly sterilizing a retarded woman but give that person's own parents a free pass."
I know nothing about case law, and I only know about this case what you've posted, and the Wikipedia run-down, but one thing that occurs to me is that Buck v. Bell appears to be about eugenics, and this case isn't. That may have no direct bearing, I dunno, IANAL-or-even-an-amateur-legalist, but it's just one difference that occurred to me.
posted by Bugbread at 9:12 AM on January 5, 2007
I know nothing about case law, and I only know about this case what you've posted, and the Wikipedia run-down, but one thing that occurs to me is that Buck v. Bell appears to be about eugenics, and this case isn't. That may have no direct bearing, I dunno, IANAL-or-even-an-amateur-legalist, but it's just one difference that occurred to me.
posted by Bugbread at 9:12 AM on January 5, 2007
retards. . .
Fuck off troll, the grown-ups are talking.
bugbread, jb and the parents have already covered the distinction.
posted by dgaicun at 9:16 AM on January 5, 2007
Fuck off troll, the grown-ups are talking.
bugbread, jb and the parents have already covered the distinction.
posted by dgaicun at 9:16 AM on January 5, 2007
jeffburdges : "Why much we let retards have kids at all?"
Because those genetic traits aren't always passed on to their offspring? The bigger issue, it would appear, is that if someone is considered as not being able to give informed consent, any production of offspring would be the result, legally, of rape (even if the person were willing, I guess it would be similar to statutory rape), and I'm not sure how the law approaches deciding on whether an abortion should or should not be performed if the pregnant party is unable to consent to either the bearing or termination of a pregnancy.
Actually, that's a pretty damn interesting issue, that I'm shocked I'd never thought about. Any legal types, or folks informed about abortion law in general, know? What are the rules about abortion by minors (who are considered too young to give informed consent)?
posted by Bugbread at 9:17 AM on January 5, 2007
Because those genetic traits aren't always passed on to their offspring? The bigger issue, it would appear, is that if someone is considered as not being able to give informed consent, any production of offspring would be the result, legally, of rape (even if the person were willing, I guess it would be similar to statutory rape), and I'm not sure how the law approaches deciding on whether an abortion should or should not be performed if the pregnant party is unable to consent to either the bearing or termination of a pregnancy.
Actually, that's a pretty damn interesting issue, that I'm shocked I'd never thought about. Any legal types, or folks informed about abortion law in general, know? What are the rules about abortion by minors (who are considered too young to give informed consent)?
posted by Bugbread at 9:17 AM on January 5, 2007
i know you need parental consent for abortion in most states if you're under 18, no matter what or why.
posted by amberglow at 9:21 AM on January 5, 2007
posted by amberglow at 9:21 AM on January 5, 2007
i don't know why they didn't give her a colostomy too--poopy diapers for the next 70 years?
there's something really weird and sick about all of their changes being sex-related exclusively, except for the size thing.
posted by amberglow at 9:23 AM on January 5, 2007
there's something really weird and sick about all of their changes being sex-related exclusively, except for the size thing.
posted by amberglow at 9:23 AM on January 5, 2007
Friends of the family have a 20-year-old daughter with the mental capacity of a four year old. The first time she got her period, she screamed in utter horror as if she were being murdered. No amount of explanation could calm her--she does not have the mental capacity to understand what's happening to her. All she knows is that there's all this blood and she hurts. It's gotten a bit better over the years, but every time someone has to change her pad (several times a day for a week every month), there's a HUGE freak-out.
I understand that your commitment to compassion may lead you to conclude that depriving someone of their reproductive organs is an affront to their dignity and humanity, amberglow. But the truth is that having a womb is dirty, painful, scary business--especially if you have no capacity for understanding its purpose. This poor child can't even tell anyone if she has cramps (which can be bad enough to make a grown woman pass out) or if her pad is pulling on her pubic hair or any of the million other discomforts and indignities that accompany menstruation. I think a hysterectomy is quite humane under the circumstances.
posted by jrossi4r at 9:31 AM on January 5, 2007 [1 favorite]
I understand that your commitment to compassion may lead you to conclude that depriving someone of their reproductive organs is an affront to their dignity and humanity, amberglow. But the truth is that having a womb is dirty, painful, scary business--especially if you have no capacity for understanding its purpose. This poor child can't even tell anyone if she has cramps (which can be bad enough to make a grown woman pass out) or if her pad is pulling on her pubic hair or any of the million other discomforts and indignities that accompany menstruation. I think a hysterectomy is quite humane under the circumstances.
posted by jrossi4r at 9:31 AM on January 5, 2007 [1 favorite]
there's something really weird and sick about all of their changes being sex-related exclusively, except for the size thing.
No, what is weird and sick is the outrage that someone with the mind, autonomy, and awareness of a fetus is being denied their "right" to the negative health, care-taking, and abuse consequences associated with natural reproductive development.
Do you understand the naturalistic fallacy? Do you have an argument that extends beyond one sentence emotings and insults? The parents and Mefites like jb and bugbread are making cases, while you are just making faces. Please, for the love of God, engage the arguments presented for once before you toss in another glib moral condemnation of the parents.
posted by dgaicun at 9:40 AM on January 5, 2007
No, what is weird and sick is the outrage that someone with the mind, autonomy, and awareness of a fetus is being denied their "right" to the negative health, care-taking, and abuse consequences associated with natural reproductive development.
Do you understand the naturalistic fallacy? Do you have an argument that extends beyond one sentence emotings and insults? The parents and Mefites like jb and bugbread are making cases, while you are just making faces. Please, for the love of God, engage the arguments presented for once before you toss in another glib moral condemnation of the parents.
posted by dgaicun at 9:40 AM on January 5, 2007
amberglow : "i know you need parental consent for abortion in most states if you're under 18, no matter what or why."
Thanks.
amberglow : "i don't know why they didn't give her a colostomy too--poopy diapers for the next 70 years?"
Perhaps because their presiding interest was not their convenience, but their ability to take care of her as she gets older, and her quality of life? You seem to be providing a counterargument against yourself.
amberglow : "there's something really weird and sick about all of their changes being sex-related exclusively, except for the size thing."
There's something weird and sick about all their changes being size-related exclusively, except for the sex thing. And that the surgeries all have five vowels, except for the one that has four.
We're only talking about four treatments: hysterectomy (sexual), mastectomy (sexual), estrogen treatments (size), and appendectomy (preventive treatment). In a sample size that small, pretty much anything will seem like an anomaly. Plus, she's approaching puberty, so most of the big bodily changes will be sexual, and hence any treatment done with this time limit in mind is likely to be sexually related.
posted by Bugbread at 9:57 AM on January 5, 2007
Thanks.
amberglow : "i don't know why they didn't give her a colostomy too--poopy diapers for the next 70 years?"
Perhaps because their presiding interest was not their convenience, but their ability to take care of her as she gets older, and her quality of life? You seem to be providing a counterargument against yourself.
amberglow : "there's something really weird and sick about all of their changes being sex-related exclusively, except for the size thing."
There's something weird and sick about all their changes being size-related exclusively, except for the sex thing. And that the surgeries all have five vowels, except for the one that has four.
We're only talking about four treatments: hysterectomy (sexual), mastectomy (sexual), estrogen treatments (size), and appendectomy (preventive treatment). In a sample size that small, pretty much anything will seem like an anomaly. Plus, she's approaching puberty, so most of the big bodily changes will be sexual, and hence any treatment done with this time limit in mind is likely to be sexually related.
posted by Bugbread at 9:57 AM on January 5, 2007
considering how little Ashley really has in her life, I'd wager that taking part in family activities is a disproportionately huge part of it
Considering that she has the brain capacity of a three-month-old, I'd wager that she has no concept of a family activity.
Buck v. Bell appears to be about eugenics, and this case isn't
I don't think either case is primarily about eugenics. The state thought (and the Supreme Court agreed) that it had a legitimate interest in not having to expend government resources for the care of invalids. The fact that Ashley's case involves an added layer of emotional complexity doesn't really change anything.
While we're on the subject of moral outrage, the insinuation put forward by dgaicun that only people who have children can possibly appreciate the consequences of this decision, is insulting.
posted by Saucy Intruder at 10:02 AM on January 5, 2007
Considering that she has the brain capacity of a three-month-old, I'd wager that she has no concept of a family activity.
Buck v. Bell appears to be about eugenics, and this case isn't
I don't think either case is primarily about eugenics. The state thought (and the Supreme Court agreed) that it had a legitimate interest in not having to expend government resources for the care of invalids. The fact that Ashley's case involves an added layer of emotional complexity doesn't really change anything.
While we're on the subject of moral outrage, the insinuation put forward by dgaicun that only people who have children can possibly appreciate the consequences of this decision, is insulting.
posted by Saucy Intruder at 10:02 AM on January 5, 2007
Speaking of Buck v. Bell, the horrible thing about that case was a failure not only of morals, but science: At worst, Carrie Buck was only mildly retarded, and her daughter was actually of normal intelligence.
posted by Saucy Intruder at 10:04 AM on January 5, 2007
posted by Saucy Intruder at 10:04 AM on January 5, 2007
the insinuation put forward by dgaicun that only people who have children can possibly appreciate the consequences of this decision, is insulting.
Um, no. I insinuated no such thing.
And, again, jb and the parents already covered the lame BvB/eugenics angle, and it made sense, so of course, everyone keeps ignoring it.
posted by dgaicun at 10:12 AM on January 5, 2007
Um, no. I insinuated no such thing.
And, again, jb and the parents already covered the lame BvB/eugenics angle, and it made sense, so of course, everyone keeps ignoring it.
posted by dgaicun at 10:12 AM on January 5, 2007
Ok, this comment is going to seem a little out of place, and it probably deserves to be in MetaTalk, because it's about the discussion, not part of the discussion, but experience tells me if I put it in Meta it will be seen as a callout (which it very definitely is not), or will just result in us discussing the same issues there as here (which is not what my question is about).
So:
As I mentioned above, when I first read about this, somewhere on the IntraWeb, I was incensed. Then I read more about it, and realized I was bringing a lot of assumptions/baggage. Now I'm a little creeped out, but I basically understand and agree with the parents' logic.
In this discussion, we have a lot of heated disagreement. The way these discussions normally work out, nobody appears to change their mind, but instead it's like an exercise in logic, where the goal/result is that of each side trying to form the best arguments for their position (whether they convince anyone or not). So every once in a while I think "Fine, the logical structuring of arguments is like a puzzle, and interesting in its own right, but what's the point? No matter how well people on side A or side B phrase their arguments, no-one who reads it will be convinced, it'll just provide them with the material for their side of the logical structuring task". However, as I said, in this case, my mind did change, quite radically, from my first opinion to my current opinion, though that was before I read about this on Mefi.
That enormous explanation / justification for my question finished, my question is:
Is there anyone here who has had their opinion changed, in either direction, due to the points being brought up here? Or is there anyone whose basic opinion remains the same, but whose conviction about the issue has been strengthened, or softened?
posted by Bugbread at 10:12 AM on January 5, 2007
So:
As I mentioned above, when I first read about this, somewhere on the IntraWeb, I was incensed. Then I read more about it, and realized I was bringing a lot of assumptions/baggage. Now I'm a little creeped out, but I basically understand and agree with the parents' logic.
In this discussion, we have a lot of heated disagreement. The way these discussions normally work out, nobody appears to change their mind, but instead it's like an exercise in logic, where the goal/result is that of each side trying to form the best arguments for their position (whether they convince anyone or not). So every once in a while I think "Fine, the logical structuring of arguments is like a puzzle, and interesting in its own right, but what's the point? No matter how well people on side A or side B phrase their arguments, no-one who reads it will be convinced, it'll just provide them with the material for their side of the logical structuring task". However, as I said, in this case, my mind did change, quite radically, from my first opinion to my current opinion, though that was before I read about this on Mefi.
That enormous explanation / justification for my question finished, my question is:
Is there anyone here who has had their opinion changed, in either direction, due to the points being brought up here? Or is there anyone whose basic opinion remains the same, but whose conviction about the issue has been strengthened, or softened?
posted by Bugbread at 10:12 AM on January 5, 2007
Saucy Intruder : "Considering that she has the brain capacity of a three-month-old, I'd wager that she has no concept of a family activity."
True, but that isn't to say that she can't enjoy one. My son, at nine months, probably has no concept of a family activity (he probably doesn't even have a concept of family, except "I really like that lady who feeds me, and the skinny guy who plays with me is OK too"), but he enjoys playing with his mom and me, enjoyed playing with my grandparents at Christmas, and enjoys being carried around by people who he trusts (though he may not realize they are family members yet).
Saucy Intruder : "The state thought (and the Supreme Court agreed) that it had a legitimate interest in not having to expend government resources for the care of invalids. The fact that Ashley's case involves an added layer of emotional complexity doesn't really change anything."
First, thanks on the eugenics correction. You're right, while Buck vs. Bell did appear to pave the way for eugenics legislation, it, itself, was not really a eugenically related case. Sorry about that.
Regarding the "added layer of emotional complexity", I certainly don't mean to be saying that's a dividing factor, and I'm sorry if I misphrased myself to give that impression. From what I can see in Buck vs. Bell, the argument is "sterilization is OK if it benefits the individual and society", and in this case the "benefit to society" angle is absent, and the issue (if the parents are being honest) is of benefit to the individual. So it's not an added emotional layer that separates them, but the removal of the importance on effect on society, making the decision one that is entirely based on the benefits to the individual in question.
Saucy Intruder : "Speaking of Buck v. Bell, the horrible thing about that case was a failure not only of morals, but science: At worst, Carrie Buck was only mildly retarded, and her daughter was actually of normal intelligence."
Agreed. Whatever support I have for this particular case probably doesn't extend to the Buck vs. Bell case, as it's rather different.
posted by Bugbread at 10:34 AM on January 5, 2007
True, but that isn't to say that she can't enjoy one. My son, at nine months, probably has no concept of a family activity (he probably doesn't even have a concept of family, except "I really like that lady who feeds me, and the skinny guy who plays with me is OK too"), but he enjoys playing with his mom and me, enjoyed playing with my grandparents at Christmas, and enjoys being carried around by people who he trusts (though he may not realize they are family members yet).
Saucy Intruder : "The state thought (and the Supreme Court agreed) that it had a legitimate interest in not having to expend government resources for the care of invalids. The fact that Ashley's case involves an added layer of emotional complexity doesn't really change anything."
First, thanks on the eugenics correction. You're right, while Buck vs. Bell did appear to pave the way for eugenics legislation, it, itself, was not really a eugenically related case. Sorry about that.
Regarding the "added layer of emotional complexity", I certainly don't mean to be saying that's a dividing factor, and I'm sorry if I misphrased myself to give that impression. From what I can see in Buck vs. Bell, the argument is "sterilization is OK if it benefits the individual and society", and in this case the "benefit to society" angle is absent, and the issue (if the parents are being honest) is of benefit to the individual. So it's not an added emotional layer that separates them, but the removal of the importance on effect on society, making the decision one that is entirely based on the benefits to the individual in question.
Saucy Intruder : "Speaking of Buck v. Bell, the horrible thing about that case was a failure not only of morals, but science: At worst, Carrie Buck was only mildly retarded, and her daughter was actually of normal intelligence."
Agreed. Whatever support I have for this particular case probably doesn't extend to the Buck vs. Bell case, as it's rather different.
posted by Bugbread at 10:34 AM on January 5, 2007
and enjoys being carried around by people who he trusts (though he may not realize they are family members yet)
Right, and what this really boils down to is the issue of caregiving. My guess is - though if anyone has evidence to the contrary, please provide it - that someone with a three-month-old mental capacity can adapt pretty readily to a change in whoever is taking care of her. After all, infants who are adopted early on don't suffer any worse for it nor do they have any memory of the biological parent.
The point being that, while we should all appreciate and applaud the love and sacrifice that Ashley's parents have extended on her behalf, the physical and chemical alterations of her body, if done solely in order to continue the family relationship (and yes, I know that there are medical and quasi-medical reasons as well,) doesn't benefit her in any conceivable way. It benefits the parents, and rewards them for their actions on behalf of the child. So be it. But if we're supposed to view this in light of what's in the child's best interests, all the family-togetherness stuff is fallacious.
posted by Saucy Intruder at 11:09 AM on January 5, 2007
Right, and what this really boils down to is the issue of caregiving. My guess is - though if anyone has evidence to the contrary, please provide it - that someone with a three-month-old mental capacity can adapt pretty readily to a change in whoever is taking care of her. After all, infants who are adopted early on don't suffer any worse for it nor do they have any memory of the biological parent.
The point being that, while we should all appreciate and applaud the love and sacrifice that Ashley's parents have extended on her behalf, the physical and chemical alterations of her body, if done solely in order to continue the family relationship (and yes, I know that there are medical and quasi-medical reasons as well,) doesn't benefit her in any conceivable way. It benefits the parents, and rewards them for their actions on behalf of the child. So be it. But if we're supposed to view this in light of what's in the child's best interests, all the family-togetherness stuff is fallacious.
posted by Saucy Intruder at 11:09 AM on January 5, 2007
doesn't benefit her in any conceivable way. It benefits the parents, and rewards them for their actions on behalf of the child.
yup. 3-month-olds feel pain too, and distress, and cramps sometimes when sick, and terrors, etc, and can't communicate any of it except by crying. Periods would not be the trauma to her that they would be to the caregiver.
They're excessively infantilizing her to match her mental state, yet her mental state is not even as developed as a toddler, who would remember the pain from last month if they had periods, and learn cause and effect, and start to reason, etc.
posted by amberglow at 11:19 AM on January 5, 2007
yup. 3-month-olds feel pain too, and distress, and cramps sometimes when sick, and terrors, etc, and can't communicate any of it except by crying. Periods would not be the trauma to her that they would be to the caregiver.
They're excessively infantilizing her to match her mental state, yet her mental state is not even as developed as a toddler, who would remember the pain from last month if they had periods, and learn cause and effect, and start to reason, etc.
posted by amberglow at 11:19 AM on January 5, 2007
And it tells us a lot about how they see their daughter and how they want her to appear for now and the rest of her life.
There is no evidence that they "want" this. To keep her body small is not a false appearance. If parents wanted to stunt the development of their healthy child, that would be sick. In this case, nature has stunted the development of their child. Mentally, this person is stuck at a level of cognition of a 3 month old baby. She cannot move her own body. They are not sure if she recognizes her family. She will never be able to speak or understand language. It is a tragic case.
Her body, on the other hand, is reasonably healthy, and if left to nature's course, would develop into a fully adult body, with all the attendant complications of that. But none of the benefits of a larger body would be available to her. These surgeries allow her body to somewhat more accurately reflect her mind (such as it is).
Personally, I think euthanasia would be acceptable, and I think preventive treatments like this are acceptable, and if they wanted to change her menstrual pads etc, that would be acceptable too. None of these situations is ideal, because nature has dealt these folks a rough hand. I don't see how we can condemn the parents for whichever option they choose, though. Again, to view Ashley as an autonomous agent is completely misguided. A healthy adult of almost any species of mammal or bird is likely to have a greater level of mental awareness than this girl.
posted by mdn at 11:28 AM on January 5, 2007
There is no evidence that they "want" this. To keep her body small is not a false appearance. If parents wanted to stunt the development of their healthy child, that would be sick. In this case, nature has stunted the development of their child. Mentally, this person is stuck at a level of cognition of a 3 month old baby. She cannot move her own body. They are not sure if she recognizes her family. She will never be able to speak or understand language. It is a tragic case.
Her body, on the other hand, is reasonably healthy, and if left to nature's course, would develop into a fully adult body, with all the attendant complications of that. But none of the benefits of a larger body would be available to her. These surgeries allow her body to somewhat more accurately reflect her mind (such as it is).
Personally, I think euthanasia would be acceptable, and I think preventive treatments like this are acceptable, and if they wanted to change her menstrual pads etc, that would be acceptable too. None of these situations is ideal, because nature has dealt these folks a rough hand. I don't see how we can condemn the parents for whichever option they choose, though. Again, to view Ashley as an autonomous agent is completely misguided. A healthy adult of almost any species of mammal or bird is likely to have a greater level of mental awareness than this girl.
posted by mdn at 11:28 AM on January 5, 2007
There is no evidence that they "want" this. To keep her body small is not a false appearance. If parents wanted to stunt the development of their healthy child, that would be sick.
Of course there is. Stunting the body's growth and physical development to match her mental state is exactly what they want, and what they did.
posted by amberglow at 11:31 AM on January 5, 2007
Of course there is. Stunting the body's growth and physical development to match her mental state is exactly what they want, and what they did.
posted by amberglow at 11:31 AM on January 5, 2007
I think that if you truly believe she's not an autonomous agent then you can't really buy much of their reasoning--they themselves go on and on about her discomfort if she had breasts, or periods, and what if she was raped or made caregivers excited, etc.
They're the ones who are projecting their fears and weirdness onto her, but unlike normal parents have actually ensured their daughter does not get to expand even her physical experiences (even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged.)
posted by amberglow at 11:39 AM on January 5, 2007
They're the ones who are projecting their fears and weirdness onto her, but unlike normal parents have actually ensured their daughter does not get to expand even her physical experiences (even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged.)
posted by amberglow at 11:39 AM on January 5, 2007
Girl, interrupted: ...Another major concern - while not detracting from the commitment of Ashley's parents to her care - is the alarmingly misogynistic tone of the father's blog. Would a parent suggest the castration of a nine-year-old similarly disabled boy for fear that, in his teen years, he might become sexually aggressive?
The blog constantly associates much of what it is to be a woman with discomfort, problems and concerns. Ashley's father writes of her menstrual cycle and its "associated cramps and discomfort" and "bleeding likely to be very difficult to control ...", as well as describing Ashley's breasts as becoming "a source of discomfort ... strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues." Other related issues?
The removal of the uterus; the removal of "early breast buds"; high oestrogen therapy to stunt growth as used on American teenage girls in the 60s for cosmetic reasons, are a combination of treatments that, in Ashley's case, by definition, must be experimental with unknown mental as well as physical consequences). This medical invasion doesn't just make Ashley easier to care for in the long term, it also eliminates her femaleness: she has become a neutered child. ...
posted by amberglow at 11:48 AM on January 5, 2007
The blog constantly associates much of what it is to be a woman with discomfort, problems and concerns. Ashley's father writes of her menstrual cycle and its "associated cramps and discomfort" and "bleeding likely to be very difficult to control ...", as well as describing Ashley's breasts as becoming "a source of discomfort ... strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts and other related issues." Other related issues?
The removal of the uterus; the removal of "early breast buds"; high oestrogen therapy to stunt growth as used on American teenage girls in the 60s for cosmetic reasons, are a combination of treatments that, in Ashley's case, by definition, must be experimental with unknown mental as well as physical consequences). This medical invasion doesn't just make Ashley easier to care for in the long term, it also eliminates her femaleness: she has become a neutered child. ...
posted by amberglow at 11:48 AM on January 5, 2007
Stunting the body's growth and physical development to match her mental state is exactly what they want, and what they did.
are you paying attention? TO MATCH HER MENTAL STATE! There is no evidence that they want a "pillow angel" instead of a healthy child, and much reason to expect they would have loved her to have been healthy. The fact is that she is mentally three months old, though. There is nothing that can be done about that. What would be the benefit of allowing her body to continue to grow? You can speak of vague notions like "humanity" and "dignity" but they are meaningless in this context; it would make far more sense to speak of the humanity & dignity of your dog, but even most animal rights activists are okay with giving animals under human custody hysterectomies to make their lives more comfortable.
I think that if you truly believe she's not an autonomous agent then you can't really buy much of their reasoning--they themselves go on and on about her discomfort if she had breasts, or periods, and what if she was raped or made caregivers excited, etc.
This is the classic Kantian / Cartesian dichotomy: either you're a fully autonomous self-motivated individual, or you're a morally insignificant automaton. I strongly disagree with this assessment. Animals, children, and developmentally disabled people can have some share in experience without being capable of engaging as fully responsible agents in the modern world. In these cases, we have proxy agents (custodians, parents or guardians) who make these complex decisions for them. Which decision they make is up to them, unless they are doing something clearly abusive. But in this case, many people would choose never to undergo puberty if only its frustrations and never its benefits would be available. Therefore the choice is acceptable. You might choose differently in such a situation, but you do not have the right to impose your choice. The choice is theirs: they are the proxy agents for Ashley.
(even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged.)
she cannot move her own body.
posted by mdn at 12:14 PM on January 5, 2007
are you paying attention? TO MATCH HER MENTAL STATE! There is no evidence that they want a "pillow angel" instead of a healthy child, and much reason to expect they would have loved her to have been healthy. The fact is that she is mentally three months old, though. There is nothing that can be done about that. What would be the benefit of allowing her body to continue to grow? You can speak of vague notions like "humanity" and "dignity" but they are meaningless in this context; it would make far more sense to speak of the humanity & dignity of your dog, but even most animal rights activists are okay with giving animals under human custody hysterectomies to make their lives more comfortable.
I think that if you truly believe she's not an autonomous agent then you can't really buy much of their reasoning--they themselves go on and on about her discomfort if she had breasts, or periods, and what if she was raped or made caregivers excited, etc.
This is the classic Kantian / Cartesian dichotomy: either you're a fully autonomous self-motivated individual, or you're a morally insignificant automaton. I strongly disagree with this assessment. Animals, children, and developmentally disabled people can have some share in experience without being capable of engaging as fully responsible agents in the modern world. In these cases, we have proxy agents (custodians, parents or guardians) who make these complex decisions for them. Which decision they make is up to them, unless they are doing something clearly abusive. But in this case, many people would choose never to undergo puberty if only its frustrations and never its benefits would be available. Therefore the choice is acceptable. You might choose differently in such a situation, but you do not have the right to impose your choice. The choice is theirs: they are the proxy agents for Ashley.
(even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged.)
she cannot move her own body.
posted by mdn at 12:14 PM on January 5, 2007
amberglow - this is of benefit to the child. If you read the articles and the parents' blog and think about the actual circumstances, you will see this.
Her main forms of pleasure currently are being cuddled and being carried around. No one could carry her around if she grew. She would lie in a bed, unless moved by machine, getting bedsores. She could not be carried easily from room to room. Her parents say that she seems cheered by being with them.
And what does she lose? She loses menstruel pain she would not understand, discomfort from breasts that will never feed a child, and discomfort from bedsores and illness that would come from being a bedridden adult.
As for the argument that they are neutering her? It's claptrap. A child with the mind of a 3 month old isn't female. She doesn't have a gender identity. Sure, people treat boy and girl babies differently, but that's their gender hangup. Her needs are around being warm, being cuddled, being talked and sung to.
Not that being female is defined as having a uterus or breasts; to suggest so would be an insult to thousands of women who have had hysterectomies and/or mastectomies. Hell, I'm a healthy 29-year old woman, and if I would happily remove my uterus and breasts if I could still have children, and feel no threat to my female idendity.
I think the problem here is that people are projecting. They are thinking "how would I feel?". But it isn't about someone with your thoughts, your needs. This would be a crime if it were being done to someone with the understanding and desires of an adult, or even to someone who would ever develop even partial adulthood. I have a family member who is mentally disabled. Now, her disability is fairly minor; it is like she is perpetually 16. She dates, and is capable of informed consent. She has had a child, and she is a loving mother, though not capable of caring for her daughter on her own (she lives with the child's guardian). It would be a crime to have interfeered with her maturation.
But this isn't even about someone who is capable of understanding and expressing sexual desires, even if their intellect is not strong. This is about a child who cannot even move herself, who cannot grip a doll, let alone pleasure herself, or consent to sexual activities with anyone else. The law recognises this -- there are laws to protect the sexual rights of developmentally disabled people, and those laws differentiate between people who can have sexual feelings and willingly act on them, and children like Ashley who are disabled in such a way that she could never give consent.
So you need to stop thinking of her as someone like yourself - she is a child, an infant, and you need to think of her needs as someone with the mind of an infant. And, I'm sorry this is getting repeditive, but an infant needs to be cuddled and carried and given a level of care that is impossible to give well at an adult size. Her parents couldn't even take her for walks outside - right now they have in a special adapted carriage, because she doesn't like to sit up in a wheelchair.
And yes, if I had a boy in this same situation, I would suggest he have similar treatment. In fact, I would suggest the treatment all the more so if he were capable of movement, but would always have the understanding of a toddler, because a grown man with the mind of a toddler is a danger to himself and others. Because he would have a happier life with his family than locked up in an institution, which is where most adults with these kinds of disabilities end up.
Actually, being small wouldn't affect anyone's sexual life, anymore than dwafism does - her body will be mature. If by some miracle she is able to move, she will be able to pleasure herself.
posted by jb at 12:27 PM on January 5, 2007
Her main forms of pleasure currently are being cuddled and being carried around. No one could carry her around if she grew. She would lie in a bed, unless moved by machine, getting bedsores. She could not be carried easily from room to room. Her parents say that she seems cheered by being with them.
And what does she lose? She loses menstruel pain she would not understand, discomfort from breasts that will never feed a child, and discomfort from bedsores and illness that would come from being a bedridden adult.
As for the argument that they are neutering her? It's claptrap. A child with the mind of a 3 month old isn't female. She doesn't have a gender identity. Sure, people treat boy and girl babies differently, but that's their gender hangup. Her needs are around being warm, being cuddled, being talked and sung to.
Not that being female is defined as having a uterus or breasts; to suggest so would be an insult to thousands of women who have had hysterectomies and/or mastectomies. Hell, I'm a healthy 29-year old woman, and if I would happily remove my uterus and breasts if I could still have children, and feel no threat to my female idendity.
I think the problem here is that people are projecting. They are thinking "how would I feel?". But it isn't about someone with your thoughts, your needs. This would be a crime if it were being done to someone with the understanding and desires of an adult, or even to someone who would ever develop even partial adulthood. I have a family member who is mentally disabled. Now, her disability is fairly minor; it is like she is perpetually 16. She dates, and is capable of informed consent. She has had a child, and she is a loving mother, though not capable of caring for her daughter on her own (she lives with the child's guardian). It would be a crime to have interfeered with her maturation.
But this isn't even about someone who is capable of understanding and expressing sexual desires, even if their intellect is not strong. This is about a child who cannot even move herself, who cannot grip a doll, let alone pleasure herself, or consent to sexual activities with anyone else. The law recognises this -- there are laws to protect the sexual rights of developmentally disabled people, and those laws differentiate between people who can have sexual feelings and willingly act on them, and children like Ashley who are disabled in such a way that she could never give consent.
So you need to stop thinking of her as someone like yourself - she is a child, an infant, and you need to think of her needs as someone with the mind of an infant. And, I'm sorry this is getting repeditive, but an infant needs to be cuddled and carried and given a level of care that is impossible to give well at an adult size. Her parents couldn't even take her for walks outside - right now they have in a special adapted carriage, because she doesn't like to sit up in a wheelchair.
And yes, if I had a boy in this same situation, I would suggest he have similar treatment. In fact, I would suggest the treatment all the more so if he were capable of movement, but would always have the understanding of a toddler, because a grown man with the mind of a toddler is a danger to himself and others. Because he would have a happier life with his family than locked up in an institution, which is where most adults with these kinds of disabilities end up.
Actually, being small wouldn't affect anyone's sexual life, anymore than dwafism does - her body will be mature. If by some miracle she is able to move, she will be able to pleasure herself.
posted by jb at 12:27 PM on January 5, 2007
By treatment for a boy, I don't mean castration -- that's actually a mistake on the part of amberglow's link. There has been no castration here, or suggestion of castration. The uterus has been removed, but not the ovaries.
And the main function of the treatment has been on her growth. And yes, I think it would be a good idea to limit the growth of boys with severe developmental disabilities, so that they can be cared for in the ways that they need to be. Because their need to be cared for trumps our need to see them "grow up".
posted by jb at 12:32 PM on January 5, 2007
And the main function of the treatment has been on her growth. And yes, I think it would be a good idea to limit the growth of boys with severe developmental disabilities, so that they can be cared for in the ways that they need to be. Because their need to be cared for trumps our need to see them "grow up".
posted by jb at 12:32 PM on January 5, 2007
Saucy Intruder : "the physical and chemical alterations of her body, if done solely in order to continue the family relationship"
If it helps to parse it:
"Family activities" is shorthand for activities such as cuddling and carrying. The phrase "family activities" is used here because the caretakers are her family. These operations would allow the continuance of the activities that Ashley enjoys, namely, cuddling and carrying by people she trusts/feels comfortable with. This would be true whether they were actual family or not. Conversely, if she were allowed to grow naturally, she would no longer be able to take part in these activities, even though the family relationship wouldn't change. So they aren't done solely to continue the family relationship: that will continue no matter what is or isn't done to her, until either her death, their death, or, I suppose, their disowning of her. The operations are to allow her to continue the types of activities she currently engages in with her family, which is just being abbreviated to "family activities".
amberglow : "even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged."
Maybe my kid is odd, but "play with" goes far, far too far to describe what he does. At three months, he was able to grasp a rattle. Not to shake it, just grasp it. He occasionally touched his genitals, and occasionally his other hand, sometimes his ears, often his stomach, and sometimes rubbed his eyes. He couldn't even touch his own feet at that age unless propped in a sitting position. So, sure, if she had the physical ability to move (which I gather she doesn't), then she might be able to touch a genital for a second or two a day, but that's a far cry from rubbing one off, and if the "permanently stuck at 3 months old" claim is true, it's not like she would learn over time to diddle herself, because that would be considered progressing, which is precisely the thing that she can't mentally do.
amberglow : "Would a parent suggest the castration of a nine-year-old similarly disabled boy for fear that, in his teen years, he might become sexually aggressive?"
Maybe. Would sexual aggression cause the nine-year-old discomfort, given that he's incapable of moving? And, if so, do we have any evidence that a parent wouldn't then suggest that?
posted by Bugbread at 1:22 PM on January 5, 2007
If it helps to parse it:
"Family activities" is shorthand for activities such as cuddling and carrying. The phrase "family activities" is used here because the caretakers are her family. These operations would allow the continuance of the activities that Ashley enjoys, namely, cuddling and carrying by people she trusts/feels comfortable with. This would be true whether they were actual family or not. Conversely, if she were allowed to grow naturally, she would no longer be able to take part in these activities, even though the family relationship wouldn't change. So they aren't done solely to continue the family relationship: that will continue no matter what is or isn't done to her, until either her death, their death, or, I suppose, their disowning of her. The operations are to allow her to continue the types of activities she currently engages in with her family, which is just being abbreviated to "family activities".
amberglow : "even 3-month-olds play with their genitals, btw--i'd imagine it would enrich her life to gain more pleasure from that as she aged."
Maybe my kid is odd, but "play with" goes far, far too far to describe what he does. At three months, he was able to grasp a rattle. Not to shake it, just grasp it. He occasionally touched his genitals, and occasionally his other hand, sometimes his ears, often his stomach, and sometimes rubbed his eyes. He couldn't even touch his own feet at that age unless propped in a sitting position. So, sure, if she had the physical ability to move (which I gather she doesn't), then she might be able to touch a genital for a second or two a day, but that's a far cry from rubbing one off, and if the "permanently stuck at 3 months old" claim is true, it's not like she would learn over time to diddle herself, because that would be considered progressing, which is precisely the thing that she can't mentally do.
amberglow : "Would a parent suggest the castration of a nine-year-old similarly disabled boy for fear that, in his teen years, he might become sexually aggressive?"
Maybe. Would sexual aggression cause the nine-year-old discomfort, given that he's incapable of moving? And, if so, do we have any evidence that a parent wouldn't then suggest that?
posted by Bugbread at 1:22 PM on January 5, 2007
Saucy Intruder: I apologize if my post came off as too dramatic. I was merely attempting to put a bit of perspective on your euthenasia statement. Also, I apologize to amberglow; I did not know histrionics was contagious. I'd recommend plenty of rest, distancing yourself from the thread for a bit, and a nice tall glass of perspective. That's what helped me, at least. :P
I am going to bow out of this debate for the time being, as I see that my opinions and thoughts are being represented superbly by bug bread, jb, and others, and I don't think there is much more that I could add to the discussion that would benefit it.
I'll still be reading, because this is quite the argument.
I'd also recommend, for those of you who may have/seemed to miss them, jrossi4r's post, and jb's post, as I think they shouldn't be missed.
And to bug bread, one of b1tr0t's posts made me think about what truly defines a person. b1tr0t's point represents one viewpoint that I find to be interesting, albeit in a somewhat crude manner.
Carry on.
posted by CitrusFreak12 at 1:37 PM on January 5, 2007
I am going to bow out of this debate for the time being, as I see that my opinions and thoughts are being represented superbly by bug bread, jb, and others, and I don't think there is much more that I could add to the discussion that would benefit it.
I'll still be reading, because this is quite the argument.
I'd also recommend, for those of you who may have/seemed to miss them, jrossi4r's post, and jb's post, as I think they shouldn't be missed.
And to bug bread, one of b1tr0t's posts made me think about what truly defines a person. b1tr0t's point represents one viewpoint that I find to be interesting, albeit in a somewhat crude manner.
Carry on.
posted by CitrusFreak12 at 1:37 PM on January 5, 2007
In this discussion people have stated that Ashley has the mentality of a three-month old and has limited movement. But there is no common sense here of what either term means. Can anyone access the original paper from the doctors so that perhaps we can get better information? The father says that Ashley goes to "special needs school". That may be a euphemism for supervised care or it may mean something else. He also says that she waves her hands and arms about. Can she grasp objects? Can she be taught to do so? Anyway, if anyone is to judge (and that's what we're doing) what this means to Ashley, then better information is needed.
posted by CCBC at 2:35 PM on January 5, 2007 [1 favorite]
posted by CCBC at 2:35 PM on January 5, 2007 [1 favorite]
Is there anyone here who has had their opinion changed, in either direction, due to the points being brought up here? Or is there anyone whose basic opinion remains the same, but whose conviction about the issue has been strengthened, or softened?
posted by bugbread at 12:12 PM CST on January 5 [+]
[!]
Me. Started out horrified and dead-set against; now I at least understand where they're coming from, and am damn glad that I don't have to deal with the situation concretely.
posted by COBRA! at 2:47 PM on January 5, 2007
posted by bugbread at 12:12 PM CST on January 5 [+]
[!]
Me. Started out horrified and dead-set against; now I at least understand where they're coming from, and am damn glad that I don't have to deal with the situation concretely.
posted by COBRA! at 2:47 PM on January 5, 2007
CCBC : "Anyway, if anyone is to judge (and that's what we're doing) what this means to Ashley, then better information is needed."
True.
posted by Bugbread at 2:59 PM on January 5, 2007
True.
posted by Bugbread at 2:59 PM on January 5, 2007
The father says that Ashley goes to "special needs school". That may be a euphemism for supervised care or it may mean something else. He also says that she waves her hands and arms about. Can she grasp objects? Can she be taught to do so? Anyway, if anyone is to judge (and that's what we're doing) what this means to Ashley, then better information is needed.
The parents' blog does describe her condition, and also has pictures. She apparently does not grasp toys, but they do put toys in her arms.
posted by jb at 3:53 PM on January 5, 2007
The parents' blog does describe her condition, and also has pictures. She apparently does not grasp toys, but they do put toys in her arms.
posted by jb at 3:53 PM on January 5, 2007
Alright, yes, sterilization is an outdated & imprecise remedy, although it was appropriate at the time. But, today, why do we allow babies who will be retarded to come to term at all (assuming there are good tests available for those with clear risk factors)?
posted by jeffburdges at 5:08 AM on January 6, 2007
posted by jeffburdges at 5:08 AM on January 6, 2007
Hello to all. I have read this entire thread and just had to join this site in order to comment. I am the mother and caregiver of a 15 year old young man that has a similar diagnosis and prognosis as Miss Ashley. My 26 year old daughter called me this morning to direct me to an article on CNN.com, which lead me to Ashley's website, and eventually to here. And what an interesting read I've had today. I have laughed, cried, and screamed at my computer screen in anger. So, first, I would like to thank you all for the thought provoking, emotion inducing entertainment. Next, I would like to say that none of you have any real idea of what you speak. All of you that I agree with and those of you that I would like to slap around: It is evident that you all have opinions, thoughts, & feelings on this matter. But, that is all they are and they are based only in conjecture. Even those of us that are "They's" , as in "I have no idea how THEY (the parents of a severly & profoundly disabled child) feel" can tell you that each one of us deals with a situation that no one else can understand. Every child is different and every family situation is different. Even I cannot walk in Ashley's parents shoes. Finally, I would like to say that my first response to this controversy was to say "I don't know" and then it was quickly followed by "I wonder if it's too late for my son." Thank you for listening.
posted by xrotorgirl at 9:44 AM on January 6, 2007 [1 favorite]
posted by xrotorgirl at 9:44 AM on January 6, 2007 [1 favorite]
xrotorgirl, thanks for stopping by. I wish you the best of luck with your son. I must politely but firmly object, however, to the idea that only people who have walked in the parents' shoes have the right to an opinion. What we are discussing here is social policy, and whether we as a society should tolerate what is happening to this girl. In order to do this, we need to involve everyone, regardless of whether or not they have their own story to share.
Presidents who have never served in uniform send soldiers off to die in war. Old men make laws restricting abortion. Supreme Court justices decide complex patent cases. The point is that we allow people to make decisions all the time without the hindsight of their own experiences. Those whose personal experiences are more relevant don't get to silence the rest of us. That's the nature of public policy.
posted by Saucy Intruder at 11:10 AM on January 6, 2007
Presidents who have never served in uniform send soldiers off to die in war. Old men make laws restricting abortion. Supreme Court justices decide complex patent cases. The point is that we allow people to make decisions all the time without the hindsight of their own experiences. Those whose personal experiences are more relevant don't get to silence the rest of us. That's the nature of public policy.
posted by Saucy Intruder at 11:10 AM on January 6, 2007
Saucy Intruder : "must politely but firmly object, however, to the idea that only people who have walked in the parents' shoes have the right to an opinion."
I don't think that's what xrotorgirl is saying (though I'm not sure). I think it's more along the lines of "of course, you're entitled to your own opinions, but don't overestimate the validity of those opinions." Which makes sense to me: I fully admit that what I wrote is all conjecture, as I've never met any of the people involved, never taken care of Ashley or any other disabled person, etc. Xrotorgirl isn't telling me to shut up, but just not to mistake my opinions as Momentous Towering Pillars Of Truth, as we MeFites are wont to do.
posted by Bugbread at 12:57 PM on January 6, 2007
I don't think that's what xrotorgirl is saying (though I'm not sure). I think it's more along the lines of "of course, you're entitled to your own opinions, but don't overestimate the validity of those opinions." Which makes sense to me: I fully admit that what I wrote is all conjecture, as I've never met any of the people involved, never taken care of Ashley or any other disabled person, etc. Xrotorgirl isn't telling me to shut up, but just not to mistake my opinions as Momentous Towering Pillars Of Truth, as we MeFites are wont to do.
posted by Bugbread at 12:57 PM on January 6, 2007
For the record, my opinions most certainly are Momentous Towering Pillars of Truth, they just contradict each other. I'm talking extremely momentous here.
Thanks for sharing your input xrotorgirl and I hope you'll stick around not just here but elsewhere on the site. Having posted this with conflicting feelings, I don't think I've been able to resolve some of my concerns. But this conversation has definitely made me much more sympathetic to Ashley's parents and to the family and caretakers of the severely disabled everywhere. So to answer bugbread's earlier question, I don't know of my position has changed as I never really had one. I do feel much more empathetic to her parents than before.
posted by allen.spaulding at 2:01 PM on January 6, 2007
Thanks for sharing your input xrotorgirl and I hope you'll stick around not just here but elsewhere on the site. Having posted this with conflicting feelings, I don't think I've been able to resolve some of my concerns. But this conversation has definitely made me much more sympathetic to Ashley's parents and to the family and caretakers of the severely disabled everywhere. So to answer bugbread's earlier question, I don't know of my position has changed as I never really had one. I do feel much more empathetic to her parents than before.
posted by allen.spaulding at 2:01 PM on January 6, 2007
Thanks to all who answered my kinda offtopic question above.
posted by Bugbread at 2:58 PM on January 6, 2007
posted by Bugbread at 2:58 PM on January 6, 2007
Thank you Bugbread for your thoughtful understanding. I am not surprised that you were able to get the meaning behind my comments. I would never attempt to quell any discussion that brings to light the concerns of the severly disabled and families such as mine, let alone tell anyone with an intelligent opinion to "shut up." And I do, honestly, value all of the opinions expressed by you "MeFites." And for the record, my emotionally tinged comment about "slapping" a few of you around, was not directed at Saucy Intruder. However, I shouldn't have made that comment in the first place. I let my feelings get the best of me. I've been told that one cannot make a "logical" argument if it is tinged with emotion. I'll have to agree. There is no way that I can be objective about this subject. Just as I cannot help the fact that my personal experience just might make my opinion more relevent. Or not. It just "is" what it "is."
By the way, discussing whether or not a President that has never served in uniform should have the right to be the Commander in Chief is fodder for another discussion. lol
posted by xrotorgirl at 3:07 PM on January 6, 2007
By the way, discussing whether or not a President that has never served in uniform should have the right to be the Commander in Chief is fodder for another discussion. lol
posted by xrotorgirl at 3:07 PM on January 6, 2007
you can slap me if you like, xrotor, but that won't make me change my mind. I intensely dislike what these parents have done to their child, and their selling and promotion of this to other parents of disabled children, as well as their unhealthy attitudes towards not wanting their daughter to grow up but to remain their "pillow angel", which is nauseating and reminds me of that whole Jon-Benet subculture but in a reversed way.
From a mother with a son like Ashley at Disability Studies, Temple U.: ... And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way. ...
posted by amberglow at 5:52 PM on January 6, 2007
From a mother with a son like Ashley at Disability Studies, Temple U.: ... And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way. ...
posted by amberglow at 5:52 PM on January 6, 2007
And another mom of a severely disabled kid: Pillow Talk-The Debate Over the Ashley Treatment (she thinks it's barbaric, and has many good points about improvements we need in healthcare)
posted by amberglow at 5:58 PM on January 6, 2007
posted by amberglow at 5:58 PM on January 6, 2007
and from a bio-ethicist: ...Keeping Ashley small is a pharmacological solution for a social failure — the fact that American society does not do what it should to help severely disabled children and their families. ... The problems Ashley and her parents face are terribly real. But permanently freezing a person into childhood is not the solution. Families like Ashley’s need more help, more resources, more breaks from the relentless pressure of providing care and some hope that their daughter can be somewhere safe and caring after they are gone. ...
posted by amberglow at 6:05 PM on January 6, 2007 [1 favorite]
posted by amberglow at 6:05 PM on January 6, 2007 [1 favorite]
also, giant thread on this at Pandagon, including this comment on the breast removal and the parents' thought processes
posted by amberglow at 6:30 PM on January 6, 2007
posted by amberglow at 6:30 PM on January 6, 2007
one more, and it's a good one: ... If you believe in basic human rights, you have to extend them to all humans. You can’t say that you believe in human rights, but not for people who can’t articulate their value. You can’t say that you believe in human rights but not for people who would be better off dead. If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights.
...
But many of these possibilities have been ripped away from Ashley, and regardless of how well meaning her parents no doubt are, we should never pretend that their actions are acceptable.
"Because it’s easier to carry her around" is not a compelling reason to permanently stunt someone’s growth.
"Because I couldn’t stand the thought of her being pregnant" is not a reason to permanently make someone sterile.
"Because I can’t imagine wanting to live like that” is not a reason to take someone’s life.
posted by amberglow at 6:50 PM on January 6, 2007
...
But many of these possibilities have been ripped away from Ashley, and regardless of how well meaning her parents no doubt are, we should never pretend that their actions are acceptable.
"Because it’s easier to carry her around" is not a compelling reason to permanently stunt someone’s growth.
"Because I couldn’t stand the thought of her being pregnant" is not a reason to permanently make someone sterile.
"Because I can’t imagine wanting to live like that” is not a reason to take someone’s life.
posted by amberglow at 6:50 PM on January 6, 2007
I am outraged that they removed her appendix, which was perfectly fine, healthy tissue.
Oh wait, that's right, they removed it to avoid any possible future complications it might bring.
Every other operation they performed was, given the circumstances, a form of preventative surgery. I see no difference between the removal of her appendix and the removal of her uterus: each is useless to her, and could only have affected her life negatively in the future.
The same comparison can be applied to each of the operations that Ashley had.
posted by CitrusFreak12 at 7:04 PM on January 6, 2007
Oh wait, that's right, they removed it to avoid any possible future complications it might bring.
Every other operation they performed was, given the circumstances, a form of preventative surgery. I see no difference between the removal of her appendix and the removal of her uterus: each is useless to her, and could only have affected her life negatively in the future.
The same comparison can be applied to each of the operations that Ashley had.
posted by CitrusFreak12 at 7:04 PM on January 6, 2007
... They seem disturbed by the very thought of their daughter reaching sexual maturity. Given her mental capacity, they write, a child's body is "more appropriate and more dignified than a fully grown female body". In this, they are only echoing broader social prejudices: a disabled child is an angelic creature; a disabled adult, with functioning sexual parts, is somewhat gross.
It would have been possible to stunt Ashley's growth without denying her the often pleasurable sensations of puberty. (During the Sixties the same oestrogen treatment was used to prevent girls from growing too tall.) And periods are not a sickness: they are part of the female condition. Does any person have the right to deprive another of their sexuality, fundamental as it is to our humanity? Or do such concerns cease to matter when there can never be any question of a consenting sexual relationship? ...
posted by amberglow at 8:09 PM on January 6, 2007
It would have been possible to stunt Ashley's growth without denying her the often pleasurable sensations of puberty. (During the Sixties the same oestrogen treatment was used to prevent girls from growing too tall.) And periods are not a sickness: they are part of the female condition. Does any person have the right to deprive another of their sexuality, fundamental as it is to our humanity? Or do such concerns cease to matter when there can never be any question of a consenting sexual relationship? ...
posted by amberglow at 8:09 PM on January 6, 2007
Amberglow, thank you for the links: I found the various perspectives of other parents of S&P children to be very interesting. It seems that even within the confines of our very small community, there are plenty of people on both sides of this fence. And, I would venture to guess, many more like myself that find themselves strattling said fence.
The one issue that I think all of us can agree on is that the support system for these children and their families is nowhere near adequate: Not even close. In light of that One Momentus Towering Pillar of Truth, I believe that until that changes, parents dealing with such difficult issues will be forced to continue to look for alternative ways of improving the quality of our childrens lives.
Here's another link to yet another parent's blog:
posted by xrotorgirl at 1:25 AM on January 7, 2007 [1 favorite]
The one issue that I think all of us can agree on is that the support system for these children and their families is nowhere near adequate: Not even close. In light of that One Momentus Towering Pillar of Truth, I believe that until that changes, parents dealing with such difficult issues will be forced to continue to look for alternative ways of improving the quality of our childrens lives.
Here's another link to yet another parent's blog:
posted by xrotorgirl at 1:25 AM on January 7, 2007 [1 favorite]
http://indecisivegirl.blogspot.com/2007/01/gray.html
Sorry, I screwed up posting the link before!!
posted by xrotorgirl at 1:30 AM on January 7, 2007
Sorry, I screwed up posting the link before!!
posted by xrotorgirl at 1:30 AM on January 7, 2007
amberglow, speaking as someone who has had periods: they are NOT an inalienable part of the female condition. In fact, I'm really happy that my current form of birth control has all but eliminated mine. It's wonderful to not have a period.
And I suggest that before you go on telling women how wonderful and womanly their periods are, that you spend 7 days a month with smelly ketchup down your pants. Oh, and punch yourself in the stomach for at least one of those days.
posted by jb at 3:22 AM on January 7, 2007
And I suggest that before you go on telling women how wonderful and womanly their periods are, that you spend 7 days a month with smelly ketchup down your pants. Oh, and punch yourself in the stomach for at least one of those days.
posted by jb at 3:22 AM on January 7, 2007
amberglow writes "If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights."
Bit of a straw man, though, isn't it? Is there anyone who is supporting this who is telling themselves "it's okay for parents to mutilate their daughter with absolutely no cause, and no medical argument"? I haven't seen any. I see a lot of folks (group A) who're saying "it's okay for parents to perform preventative surgery on their daughter with several causes and medical arguments", and another group (group B) that disagrees that the surgery is preventative instead of mutilative, that the surgery has causes, and that the surgery has medical arguments, and thus finds Group A to be hypocritical, not for believing two things which are in contradiction, but for believing two things which aren't in contradiction, but which group B disagrees with.
You might as well say "If you're able to tell yourself that it is acceptable to make people with disabilities suffer needless pain and discomfort, and deprive them of the things they find pleasing in life, for absolutely no reason, medical or otherwise, you need to rethink your definition of human rights". Which is this exact same situation expressed from the other side using the same sloppy, straw-man logic.
amberglow writes "And periods are not a sickness: they are part of the female condition."
What does that even mean? "The female condition"? So if someone has uterine cancer, and has their uterus removed, they are no longer female? Women during menopause aren't female? Olympic athletes aren't female? Women on the pill aren't female?
There may be good arguments against the Ashley treatment. I've seen a few upthread. But throwing around incredibly vague, emotion-filed but content-less phrases in defense of an argument is not the way to make a convincing argument, it's the wacko fundamentalist approach to debate.
posted by Bugbread at 5:08 AM on January 7, 2007
Bit of a straw man, though, isn't it? Is there anyone who is supporting this who is telling themselves "it's okay for parents to mutilate their daughter with absolutely no cause, and no medical argument"? I haven't seen any. I see a lot of folks (group A) who're saying "it's okay for parents to perform preventative surgery on their daughter with several causes and medical arguments", and another group (group B) that disagrees that the surgery is preventative instead of mutilative, that the surgery has causes, and that the surgery has medical arguments, and thus finds Group A to be hypocritical, not for believing two things which are in contradiction, but for believing two things which aren't in contradiction, but which group B disagrees with.
You might as well say "If you're able to tell yourself that it is acceptable to make people with disabilities suffer needless pain and discomfort, and deprive them of the things they find pleasing in life, for absolutely no reason, medical or otherwise, you need to rethink your definition of human rights". Which is this exact same situation expressed from the other side using the same sloppy, straw-man logic.
amberglow writes "And periods are not a sickness: they are part of the female condition."
What does that even mean? "The female condition"? So if someone has uterine cancer, and has their uterus removed, they are no longer female? Women during menopause aren't female? Olympic athletes aren't female? Women on the pill aren't female?
There may be good arguments against the Ashley treatment. I've seen a few upthread. But throwing around incredibly vague, emotion-filed but content-less phrases in defense of an argument is not the way to make a convincing argument, it's the wacko fundamentalist approach to debate.
posted by Bugbread at 5:08 AM on January 7, 2007
The one issue that I think all of us can agree on is that the support system for these children and their families is nowhere near adequate: Not even close. In light of that One Momentus Towering Pillar of Truth, I believe that until that changes, parents dealing with such difficult issues will be forced to continue to look for alternative ways of improving the quality of our childrens lives.
I think that's the real point here totally--and that's also why what these parents did, which is only partially and not at all the most effective response to that point, is so wrong--instead of fighting for better care for her and others or fighting the make the system more responsive and better, they chose to radically alter their daughter's body to prevent things that may or may not happen. They spent much time and energy on changing her to fit the flawed system we have now--and their own desires, not on changing the system to respond to her needs. They in effect didn't even bother to make the system respond--which is why i see their fetishizing and objectivizing of her as being the most important point underlying their actions. They weren't fighting for her but fighting to make their own lives easier and more comfortable--that's wrong. Their fights are not in the kid's best interests -- now or in the future.
The abuse and her being somehow more enticing excuse especially is wholly false and misguided to say the least, since kids get abused too, and flatchested people do as well. I'd actually say she's at more risk of abuse now should she ever have to go into care, because she won't have the physical strength she should have.
We will have national health within our lifetimes, and certainly within hers. If parents of disabled kids do these things instead to their kids, we won't ever have better care for the disabled--ever. This actively harms the need for better care.
jb, no one is saying periods are wonderful--there are, however, far less radical ways to reduce the pain and discomfort, including seasonal birth control that reduces them to only 4 a year, no? There could have been hormone or other treatment in this case without such real surgery to fully remove things, and there were many other options they didn't explore at all. To quote them, it wouldn't be "dignified" for her to have any kind of woman's or adult body.
posted by amberglow at 5:31 AM on January 7, 2007
I think that's the real point here totally--and that's also why what these parents did, which is only partially and not at all the most effective response to that point, is so wrong--instead of fighting for better care for her and others or fighting the make the system more responsive and better, they chose to radically alter their daughter's body to prevent things that may or may not happen. They spent much time and energy on changing her to fit the flawed system we have now--and their own desires, not on changing the system to respond to her needs. They in effect didn't even bother to make the system respond--which is why i see their fetishizing and objectivizing of her as being the most important point underlying their actions. They weren't fighting for her but fighting to make their own lives easier and more comfortable--that's wrong. Their fights are not in the kid's best interests -- now or in the future.
The abuse and her being somehow more enticing excuse especially is wholly false and misguided to say the least, since kids get abused too, and flatchested people do as well. I'd actually say she's at more risk of abuse now should she ever have to go into care, because she won't have the physical strength she should have.
We will have national health within our lifetimes, and certainly within hers. If parents of disabled kids do these things instead to their kids, we won't ever have better care for the disabled--ever. This actively harms the need for better care.
jb, no one is saying periods are wonderful--there are, however, far less radical ways to reduce the pain and discomfort, including seasonal birth control that reduces them to only 4 a year, no? There could have been hormone or other treatment in this case without such real surgery to fully remove things, and there were many other options they didn't explore at all. To quote them, it wouldn't be "dignified" for her to have any kind of woman's or adult body.
posted by amberglow at 5:31 AM on January 7, 2007
xrotor--regarding your link-- they make all sorts of lifts--many of the links i posted mentioned Hoyer ones. All of these people can get them--or fight so that medicaid or medicare or their own insurance covers the cost of them if they don't already--to get them out of bed and into wheelchairs, and out of wheelchairs and into tubs. Again--there are far less radical and mutilating means to get things done.
These parents fought so hard to have these things done to their daughter's body and went above and beyond, yet didn't even consider lifts or all the other workarounds and solutions that already exist? Or that will exist within her lifetime?
posted by amberglow at 5:43 AM on January 7, 2007
These parents fought so hard to have these things done to their daughter's body and went above and beyond, yet didn't even consider lifts or all the other workarounds and solutions that already exist? Or that will exist within her lifetime?
posted by amberglow at 5:43 AM on January 7, 2007
amberglow, I'm sorry but your comments continue to show that you have not read the links. "she won't have the physical strength she should have"? SHE CANNOT MOVE HERSELF. That was obvious from the first link. She has and never would have had that physical strength.
As her full weight, she would still not be able to move herself, and more prone to bedsores. My aunt's mother was bedridden for the last year of her life, and the bedsores were horrific. What justification is there for subjecting someone to this who can never even move their own body or complain of the pain?
There were serious medical reasons for these procedures, and benefits for both Ashley and her parents. You haven't read the articles carefully enough to understand what they were.
There is nothing innately "natural" about anything human beings do. We wear clothes, we grow our own food. "Natural" is not an a priori good. Being "natural" means I should be blind as a bat. Her parents and the medical ethics board who oversaw this treament have acted to make Ashley's life as comfortable as possible, and used the human ability to affect the natural world to achieve this.
posted by jb at 5:52 AM on January 7, 2007
As her full weight, she would still not be able to move herself, and more prone to bedsores. My aunt's mother was bedridden for the last year of her life, and the bedsores were horrific. What justification is there for subjecting someone to this who can never even move their own body or complain of the pain?
There were serious medical reasons for these procedures, and benefits for both Ashley and her parents. You haven't read the articles carefully enough to understand what they were.
There is nothing innately "natural" about anything human beings do. We wear clothes, we grow our own food. "Natural" is not an a priori good. Being "natural" means I should be blind as a bat. Her parents and the medical ethics board who oversaw this treament have acted to make Ashley's life as comfortable as possible, and used the human ability to affect the natural world to achieve this.
posted by jb at 5:52 AM on January 7, 2007
They did consider lifts. They also considered that Ashley likes (as much as she can express it) being held and lifted by them, and would not like a mechanical lift as much. Ashley does not like sitting in a wheelchair - she likes to lie down in a carriage, and she is at the weight limit of a double carriage.
You are putting your needs and perceptions of what is right above the child's needs.
posted by jb at 5:55 AM on January 7, 2007
You are putting your needs and perceptions of what is right above the child's needs.
posted by jb at 5:55 AM on January 7, 2007
Also, we live in a time of amazing medical advances for many many things--who's to say that stem cells or something else won't be able to improve brain function, or some computer linkup thing to enhance the brain? They're actually testing things that can make the blind see nowadays. They're regrowing whole organs. They're doing remarkable things, and we're learning more and more about the brain every day.
And in terms of the female stuff and growing up, i'm sure they'll have a 1-period-a-year or less thing soon too, and if her breasts grew in and did bother her they could have been reduced in size and not wholly eliminated --at that time-- and not preventively now. In our lifetimes there have been remarkable advances in that field too, with many more to come.
posted by amberglow at 5:56 AM on January 7, 2007
And in terms of the female stuff and growing up, i'm sure they'll have a 1-period-a-year or less thing soon too, and if her breasts grew in and did bother her they could have been reduced in size and not wholly eliminated --at that time-- and not preventively now. In our lifetimes there have been remarkable advances in that field too, with many more to come.
posted by amberglow at 5:56 AM on January 7, 2007
You are putting your needs and perceptions of what is right above the child's needs.
And that's exactly what her parents did.
posted by amberglow at 5:58 AM on January 7, 2007
And that's exactly what her parents did.
posted by amberglow at 5:58 AM on January 7, 2007
There are many things in this world that Ashley might like too--having her remain laying down in a carriage will prevent her from even seeing them at all as she grows up. A carriage also will reduce where she can go, as opposed to a reinforced stroller or wheelchair. These things done to her are limiting further and forever the limited pleasures she has in life, and are not in her best interests.
posted by amberglow at 6:10 AM on January 7, 2007
posted by amberglow at 6:10 AM on January 7, 2007
amberglow,
What part of "can't move" don't you understand?
The only "pleasure" that her parents are limiting are the pleasures of bedsores, pulmonary problems, and growing pains.
posted by eparchos at 8:14 AM on January 7, 2007
What part of "can't move" don't you understand?
The only "pleasure" that her parents are limiting are the pleasures of bedsores, pulmonary problems, and growing pains.
posted by eparchos at 8:14 AM on January 7, 2007
Can't move doesn't mean she's blind or deaf. Even infants enjoy experiencing the world from a stroller--sitting up or propped up.
posted by amberglow at 9:18 AM on January 7, 2007
posted by amberglow at 9:18 AM on January 7, 2007
Except of course for the part where Ashley *cries* if she's forced to sit up or be propped up for long periods of time. Whatever other infants might like, Ashley appears not to enjoy that at all.
posted by jacquilynne at 9:41 AM on January 7, 2007
posted by jacquilynne at 9:41 AM on January 7, 2007
Amberglow,
If your intention here is to sway anyone to your way of thinking, than I suggest that you continue to present your argument by posting the thoughts & opinions of knowlegable OTHERS. At least, then, you won't risk revealing the lack of understanding that have of the S&P disabled community. I am not trying to insult you: Believe me, I wish that I were ignorant to the fine points (& not so fine ones) of caring for and being an advocate for a person that cannot DO anything for themselves.
If you read my first comment you would have learned that my son is 15 years old. Do you really think that I don't know what LIFT options there are out there? Are you kidding me? Since you seem to like the Hoyer Lift so much, why don't you go to their website & get the stats on the size of the piece of equipment that would be needed to lift a grown man. I don't need to. I have one that if kept at home, would collect dust like most people's home treadmill or stairclimber! LOL If you still don't get the picture, then I'll let you borrow mine so that you can see just how functional, practical, & streamlined this piece of equipment is. While I'm at it, try to imagine that goliath in your home right next to your son's wheelchair, his feeding chair, and his bath/toilet chair. There are also several pieces of positioning equipment that must stay at school because WE HAVE NO ROOM FOR THEM. It's at this point that I realize that I USED to have much more space available for these items when THEY WERE MUCH SMALLER. Every size upgrade in equipment has meant fewer pieces, & consequently, fewer positioning choices available for my son.
And, please, Amberglow, refrain from giving any advice regarding health insurance matters and the financial ability of families to afford durable medical equipment. It's sad that there are probably so many people out there that think that just because a child or his/her family NEEDS a piece of equipment that they can get it. If it wasn't so sad, I'd find it laughable. I mean, come on. I think we've at least established here how broken the disablity support system is: Do you really think that it's a simple matter to acquire all of the medical services that our children need? Even with good insurance it is a constant paperwork struggle (not to mention the physical struggle to take your kid to all the appointments necessary to complete the referral, requisition, fitting, & ordering process!) Hell, by the time you get the equipment home, your child has outgrown it! And, again, even with good insurance there is usually a large financial outlay. Our insurance is 80/20 for durable medical equipment. Not bad you might say, until you realize that his last wheelchair cost more than a new car! On a side note: any idea why the family uses a double stroller rigged to accomodate their daughter? 1. Because it costs less than $200 & with the rigorous wear & tear, you can replace it as necessary by trotting down to the closest Walmart. 2. Because a similar piece of special needs equipment would cost several thousands of dollars, take months to be delivered, & would NOT have the same ease of use, portability & storage.
Finally, please do not even suggest that just because Ashley's parents chose a course of action that works for their particular situation, that they have failed to exert any energy to "fight the system" and advocate for their daughter's rights. Like most parents, we are multi-taskers: Maybe to the Nth degree! And we are a small, tight community within YOUR communities. And regardless of the choices we make for our own families, we KNOW that something (almost everything) needs to change for the greater good of all. We can't forget that because it is shoved in our faces everyday. But, we cannot just sit back & wait for things to get better in the future. We have to deal with our daily issues TODAY. We do not have the luxury of focusing only on one issue: Universal healthcare, available respite programs, Early Intervention, Bio-medical Ethics, Accessability, Medical Research, availablity of Durable Medical Equipment, etc., etc., etc. Like the rest of you, we do what we can to facilitate change, and we live our lives as best we can with what we have to work with now.
posted by xrotorgirl at 10:10 AM on January 7, 2007 [4 favorites]
If your intention here is to sway anyone to your way of thinking, than I suggest that you continue to present your argument by posting the thoughts & opinions of knowlegable OTHERS. At least, then, you won't risk revealing the lack of understanding that have of the S&P disabled community. I am not trying to insult you: Believe me, I wish that I were ignorant to the fine points (& not so fine ones) of caring for and being an advocate for a person that cannot DO anything for themselves.
If you read my first comment you would have learned that my son is 15 years old. Do you really think that I don't know what LIFT options there are out there? Are you kidding me? Since you seem to like the Hoyer Lift so much, why don't you go to their website & get the stats on the size of the piece of equipment that would be needed to lift a grown man. I don't need to. I have one that if kept at home, would collect dust like most people's home treadmill or stairclimber! LOL If you still don't get the picture, then I'll let you borrow mine so that you can see just how functional, practical, & streamlined this piece of equipment is. While I'm at it, try to imagine that goliath in your home right next to your son's wheelchair, his feeding chair, and his bath/toilet chair. There are also several pieces of positioning equipment that must stay at school because WE HAVE NO ROOM FOR THEM. It's at this point that I realize that I USED to have much more space available for these items when THEY WERE MUCH SMALLER. Every size upgrade in equipment has meant fewer pieces, & consequently, fewer positioning choices available for my son.
And, please, Amberglow, refrain from giving any advice regarding health insurance matters and the financial ability of families to afford durable medical equipment. It's sad that there are probably so many people out there that think that just because a child or his/her family NEEDS a piece of equipment that they can get it. If it wasn't so sad, I'd find it laughable. I mean, come on. I think we've at least established here how broken the disablity support system is: Do you really think that it's a simple matter to acquire all of the medical services that our children need? Even with good insurance it is a constant paperwork struggle (not to mention the physical struggle to take your kid to all the appointments necessary to complete the referral, requisition, fitting, & ordering process!) Hell, by the time you get the equipment home, your child has outgrown it! And, again, even with good insurance there is usually a large financial outlay. Our insurance is 80/20 for durable medical equipment. Not bad you might say, until you realize that his last wheelchair cost more than a new car! On a side note: any idea why the family uses a double stroller rigged to accomodate their daughter? 1. Because it costs less than $200 & with the rigorous wear & tear, you can replace it as necessary by trotting down to the closest Walmart. 2. Because a similar piece of special needs equipment would cost several thousands of dollars, take months to be delivered, & would NOT have the same ease of use, portability & storage.
Finally, please do not even suggest that just because Ashley's parents chose a course of action that works for their particular situation, that they have failed to exert any energy to "fight the system" and advocate for their daughter's rights. Like most parents, we are multi-taskers: Maybe to the Nth degree! And we are a small, tight community within YOUR communities. And regardless of the choices we make for our own families, we KNOW that something (almost everything) needs to change for the greater good of all. We can't forget that because it is shoved in our faces everyday. But, we cannot just sit back & wait for things to get better in the future. We have to deal with our daily issues TODAY. We do not have the luxury of focusing only on one issue: Universal healthcare, available respite programs, Early Intervention, Bio-medical Ethics, Accessability, Medical Research, availablity of Durable Medical Equipment, etc., etc., etc. Like the rest of you, we do what we can to facilitate change, and we live our lives as best we can with what we have to work with now.
posted by xrotorgirl at 10:10 AM on January 7, 2007 [4 favorites]
amberglow : "I'd actually say she's at more risk of abuse now should she ever have to go into care, because she won't have the physical strength she should have."
That she can't use because she doesn't have the motor skills?
amberglow : "A carriage also will reduce where she can go, as opposed to a reinforced stroller or wheelchair."
The wheelchair which she dislikes?
You've clearly read the articles. Are you just forgetting critical parts, or willfully ignoring them?
And are you really such an optimist that you think that if the parents Fought The System, they could get the system changed, and all of Ashley's needs cared for? That they're choosing the imperfect, partial, and irreversible solution, but if they really worked for it, if they weren't just so darn lazy and self-centered, they could get the perfect, total, and reversible solution by changing the entire health care system? If so, where does this boundless optimism come from?
posted by Bugbread at 11:45 AM on January 7, 2007
That she can't use because she doesn't have the motor skills?
amberglow : "A carriage also will reduce where she can go, as opposed to a reinforced stroller or wheelchair."
The wheelchair which she dislikes?
You've clearly read the articles. Are you just forgetting critical parts, or willfully ignoring them?
And are you really such an optimist that you think that if the parents Fought The System, they could get the system changed, and all of Ashley's needs cared for? That they're choosing the imperfect, partial, and irreversible solution, but if they really worked for it, if they weren't just so darn lazy and self-centered, they could get the perfect, total, and reversible solution by changing the entire health care system? If so, where does this boundless optimism come from?
posted by Bugbread at 11:45 AM on January 7, 2007
Thank you for getting involved in the discussion, xrotorgirl. The insight you’re able to provide from your experience is invaluable.
A few years ago, I wrote an article (linked above) defending parents who’d left their disabled son at a hospital when they were desperate for respite care. The brief flurry of attention that surrounded their case faded with the next news cycle – and I dare anyone to say that the support system for caregivers (parents – predominantly moms) has improved one iota since then.
I appreciate your patience when people who have not had your experience suggest that there are medical advances or new equipment or other magic solutions forthcoming for the most impaired members of our society – there are not! The disabled –especially those who are older than the Jerry Lewis poster child age – are as welcome a reminder of society’s failure as a corpse floating in Katrina floodwaters.
If Ashley’s parents can find a way to cope that works for them, more power to them. Until we’re all ready to find and pay for solutions supporting the disabled and their caregivers at the level they truly need, make that a priority over all the other equally worthwhile priorities, then who are we to judge?
posted by tizzie at 11:49 AM on January 7, 2007
A few years ago, I wrote an article (linked above) defending parents who’d left their disabled son at a hospital when they were desperate for respite care. The brief flurry of attention that surrounded their case faded with the next news cycle – and I dare anyone to say that the support system for caregivers (parents – predominantly moms) has improved one iota since then.
I appreciate your patience when people who have not had your experience suggest that there are medical advances or new equipment or other magic solutions forthcoming for the most impaired members of our society – there are not! The disabled –especially those who are older than the Jerry Lewis poster child age – are as welcome a reminder of society’s failure as a corpse floating in Katrina floodwaters.
If Ashley’s parents can find a way to cope that works for them, more power to them. Until we’re all ready to find and pay for solutions supporting the disabled and their caregivers at the level they truly need, make that a priority over all the other equally worthwhile priorities, then who are we to judge?
posted by tizzie at 11:49 AM on January 7, 2007
Thank you Tizzie for your kind words and understanding. They touched my heart and made me cry (I'm such a mush.) I wish more than anything that there was "a magic pill to cure all of our ills." The hard truth is that there are no miracles for children like Ashley & my son Andrew. As I said before, It "is" what It "is." Not an easy thing to say and not an easy thing to accept. But, the lucky ones, the families that "can find a way to cope that works for them" know that being able to accept what IS, working to change what is broken, and hoping for all the understanding & support we can get, is almost a miracle in itself.
On a lighter note, my oldest son popped in for a visit while I was posting here. I explained the issue & some of the varying opinions expressed here. I also shared some of my frustration with him. This is what he said "Mom, you know what they say about arguing on the internet, dontcha? Even if you win . . . you're retarded." Not very PC, but definately apt. I laughed my ass off. By the way, one of the greatest blessings of having a family such as ours is that you develop a very keen sense of humor. ;-)
posted by xrotorgirl at 1:13 PM on January 7, 2007
On a lighter note, my oldest son popped in for a visit while I was posting here. I explained the issue & some of the varying opinions expressed here. I also shared some of my frustration with him. This is what he said "Mom, you know what they say about arguing on the internet, dontcha? Even if you win . . . you're retarded." Not very PC, but definately apt. I laughed my ass off. By the way, one of the greatest blessings of having a family such as ours is that you develop a very keen sense of humor. ;-)
posted by xrotorgirl at 1:13 PM on January 7, 2007
xrotorgirl
I'd like to add that I also found your story very courageous. My father works with severely developmentally disabled kids in Washington state, and my first response when I saw the Ashley story was "Wow, she's just like that one girl my dad had a couple years ago."
I can't say I personally relate to much of this, but I have been around disabled people enough to develop some small understanding of the sheer amount of involvement and sacrifice that their parents go through.
Anyways, my point is that I understand very well the "keen sense of humor" you describe. Privately, with his family and with the parents of some of his kids, my dad sometimes referred to his students (who he cares about deeply) as "My little retards." It's a painful phrase, and it actually sort of bothers me even to put it down here, but I thought you'd like to hear it.
Thank you again.
posted by eparchos at 1:54 PM on January 7, 2007
I'd like to add that I also found your story very courageous. My father works with severely developmentally disabled kids in Washington state, and my first response when I saw the Ashley story was "Wow, she's just like that one girl my dad had a couple years ago."
I can't say I personally relate to much of this, but I have been around disabled people enough to develop some small understanding of the sheer amount of involvement and sacrifice that their parents go through.
Anyways, my point is that I understand very well the "keen sense of humor" you describe. Privately, with his family and with the parents of some of his kids, my dad sometimes referred to his students (who he cares about deeply) as "My little retards." It's a painful phrase, and it actually sort of bothers me even to put it down here, but I thought you'd like to hear it.
Thank you again.
posted by eparchos at 1:54 PM on January 7, 2007
You've clearly read the articles. Are you just forgetting critical parts, or willfully ignoring them?
Guess what? all babies dislike changes...once they learn that it allows them to see and experience the world in new ways they beg for it--even 3-month-olds.
Amberglow,
If your intention here is to sway anyone to your way of thinking, than I suggest that you continue to present your argument by posting the thoughts & opinions of knowlegable OTHERS. At least, then, you won't risk revealing the lack of understanding that have of the S&P disabled community. I am not trying to insult you: Believe me, I wish that I were ignorant to the fine points (& not so fine ones) of caring for and being an advocate for a person that cannot DO anything for themselves.
It's not to sway anyone, except for the fact that all of us have human dignity and rights--even the most disabled children. We all have rights too--even the most severely disabled among us. I know your life is rough, but your child has the same rights i have--not to be neutered, and not to be objectified. That goes for them whether they're disabled or not. Your child's life is not about whether you are inconvenienced or not. Your child's life is not about whether you can still carry and hug them or not. Your child has a life to live and pleasures and pain to experience, whether you are there or not. I'm sorry you don't understand that. Most of us who grew up to lead lives different from what we were brought up to lead learned that, and our parents did too. Just because your child cannot chart their own path does not mean you are allowed to neuter them or make them your "pillow angel". This is all whether i have knowledge of disability or not---all living humans have rights, and Ashley has been surgically and irrevocably altered without anyone to speak for her. Her parents did not speak or fight for her at all.
posted by amberglow at 8:51 PM on January 7, 2007
Guess what? all babies dislike changes...once they learn that it allows them to see and experience the world in new ways they beg for it--even 3-month-olds.
Amberglow,
If your intention here is to sway anyone to your way of thinking, than I suggest that you continue to present your argument by posting the thoughts & opinions of knowlegable OTHERS. At least, then, you won't risk revealing the lack of understanding that have of the S&P disabled community. I am not trying to insult you: Believe me, I wish that I were ignorant to the fine points (& not so fine ones) of caring for and being an advocate for a person that cannot DO anything for themselves.
It's not to sway anyone, except for the fact that all of us have human dignity and rights--even the most disabled children. We all have rights too--even the most severely disabled among us. I know your life is rough, but your child has the same rights i have--not to be neutered, and not to be objectified. That goes for them whether they're disabled or not. Your child's life is not about whether you are inconvenienced or not. Your child's life is not about whether you can still carry and hug them or not. Your child has a life to live and pleasures and pain to experience, whether you are there or not. I'm sorry you don't understand that. Most of us who grew up to lead lives different from what we were brought up to lead learned that, and our parents did too. Just because your child cannot chart their own path does not mean you are allowed to neuter them or make them your "pillow angel". This is all whether i have knowledge of disability or not---all living humans have rights, and Ashley has been surgically and irrevocably altered without anyone to speak for her. Her parents did not speak or fight for her at all.
posted by amberglow at 8:51 PM on January 7, 2007
Ashley and your child has a life separate from yours, whether yours is devoted to them or not. That life has value separate from your custody of it, and must be respected.
posted by amberglow at 8:53 PM on January 7, 2007
posted by amberglow at 8:53 PM on January 7, 2007
But, we cannot just sit back & wait for things to get better in the future. We have to deal with our daily issues TODAY
Your child is not just alive today, but will be for the next 60+ years. All parents strive to make a better life and future for their child, and the horrors of the past (sexual abuse, and regular abuse in care) are not evident today. Nor will they be so tomorrow, if people fight for it to be so--permanently retarding their daughter even tho the abuse they fear is not now true anymore is wrong. And it won't ever help make sure that care remains abuse-free. There are no more Willowbrooks in America, and that's because we all were horrified and changed the system. We can make the system still better--not now for this decade, but --for the future, which is where your child and Ashley will live. Don't you see that what they did to her hurts that?
posted by amberglow at 9:00 PM on January 7, 2007
Your child is not just alive today, but will be for the next 60+ years. All parents strive to make a better life and future for their child, and the horrors of the past (sexual abuse, and regular abuse in care) are not evident today. Nor will they be so tomorrow, if people fight for it to be so--permanently retarding their daughter even tho the abuse they fear is not now true anymore is wrong. And it won't ever help make sure that care remains abuse-free. There are no more Willowbrooks in America, and that's because we all were horrified and changed the system. We can make the system still better--not now for this decade, but --for the future, which is where your child and Ashley will live. Don't you see that what they did to her hurts that?
posted by amberglow at 9:00 PM on January 7, 2007
and it starts: Parents of disabled children ask doctors for 'Ashley treatment'
posted by amberglow at 10:14 PM on January 7, 2007
posted by amberglow at 10:14 PM on January 7, 2007
...Is it ethical for parents to decide what kind of body is "appropriate" for their disabled children, and shape their bodies into the desired forms?...
posted by amberglow at 10:49 PM on January 7, 2007
posted by amberglow at 10:49 PM on January 7, 2007
There are no Willowbrooks, amberglow. There is nothing. There are no group homes, there is no respite care, there is no assistance, there is no extended family, there is no it-takes-a-village, there is nothing. There are only parents, and most of the time, only mom.
Your child has a life to live and pleasures and pain to experience, whether you are there or not.
amberglow, these children, their lives are not theirs to live. That's the fundamental problem. If there were a support system, and if the burden of care was shared, then maybe the idealistic view would be valid.
Think of these lives as lives in, say, the worst battle-zone you can imagine. There are going to be compromises.
posted by tizzie at 7:07 AM on January 8, 2007
Your child has a life to live and pleasures and pain to experience, whether you are there or not.
amberglow, these children, their lives are not theirs to live. That's the fundamental problem. If there were a support system, and if the burden of care was shared, then maybe the idealistic view would be valid.
Think of these lives as lives in, say, the worst battle-zone you can imagine. There are going to be compromises.
posted by tizzie at 7:07 AM on January 8, 2007
There are no Willowbrooks, amberglow. There is nothing. There are no group homes, there is no respite care, there is no assistance, there is no extended family, there is no it-takes-a-village, there is nothing. There are only parents, and most of the time, only mom.
That's just false, tizzie. My best friend is an administrator at a big state-run residential place (broken up into many cottages) that even has some people who were actually at Willowbrook years ago.
posted by amberglow at 9:03 AM on January 8, 2007
That's just false, tizzie. My best friend is an administrator at a big state-run residential place (broken up into many cottages) that even has some people who were actually at Willowbrook years ago.
posted by amberglow at 9:03 AM on January 8, 2007
There's also respite care in every single state, as well as residential places and many other services. There's not nothing, and most if not all of the public places are very well-run these days. It's not like the old nightmare places, and it's not like those horrible private nursing homes you hear about.
posted by amberglow at 9:07 AM on January 8, 2007
posted by amberglow at 9:07 AM on January 8, 2007
But ask your friend about waiting lists. Ask him about the percentage of the population that needs services versus the number they can effectively serve.
And ask him about poorer states.
posted by tizzie at 9:11 AM on January 8, 2007
And ask him about poorer states.
posted by tizzie at 9:11 AM on January 8, 2007
Someday, you and I can have a glass (or a bottle!) of wine together, and I'll tell you the story of my life, amberglow. This isn't the place for it. But believe me when I say that I'd lay down in front of traffic before I'd defend "the system" over parents of the disabled.
posted by tizzie at 9:19 AM on January 8, 2007
posted by tizzie at 9:19 AM on January 8, 2007
bugbread asked: Is there anyone here who has had their opinion changed, in either direction, due to the points being brought up here? Or is there anyone whose basic opinion remains the same, but whose conviction about the issue has been strengthened, or softened?
I've always supported the parents so my position hasn't changed. However, I've been interested to learn the extent to which the disagreement involves an understanding of the facts.
For example, I've read on this (and also some of the many other lists discussing this issue) the suggestion that the parents could just use a mechanical lift if Ashley got too heavy to lift. But persons like xrotogirl who've actually used these things make it clear that they are no panacea and wouldn't meet the family's need for flexibility, etc.
Another more subtle factual issue is what is meant by Ashley's having the mind of a three-month old. She certainly doesn't have the capabilities of a normal three-month old. She can't eat normally, can't move her body, can't grasp a toy, doesn't clearly recognize her parents, obviously doesn't learn and change from day to day, and so on. And yet it seems that some commenters imagine her to be similar to normal three-month old babies they've known.
I've also been reminded of the uselessness of appealing to what seems inconsistent to me. For example, those who decry the some of other surgical changes to Ashley's body don't seem to mind at all that she is being fed through a G-tube surgically inserted into her stomach.
posted by Sixtieslibber at 10:20 AM on January 8, 2007
I've always supported the parents so my position hasn't changed. However, I've been interested to learn the extent to which the disagreement involves an understanding of the facts.
For example, I've read on this (and also some of the many other lists discussing this issue) the suggestion that the parents could just use a mechanical lift if Ashley got too heavy to lift. But persons like xrotogirl who've actually used these things make it clear that they are no panacea and wouldn't meet the family's need for flexibility, etc.
Another more subtle factual issue is what is meant by Ashley's having the mind of a three-month old. She certainly doesn't have the capabilities of a normal three-month old. She can't eat normally, can't move her body, can't grasp a toy, doesn't clearly recognize her parents, obviously doesn't learn and change from day to day, and so on. And yet it seems that some commenters imagine her to be similar to normal three-month old babies they've known.
I've also been reminded of the uselessness of appealing to what seems inconsistent to me. For example, those who decry the some of other surgical changes to Ashley's body don't seem to mind at all that she is being fed through a G-tube surgically inserted into her stomach.
posted by Sixtieslibber at 10:20 AM on January 8, 2007
But believe me when I say that I'd lay down in front of traffic before I'd defend "the system" over parents of the disabled.
It's not defending the system so much as pointing out that the parents' irrational fears are not a valid rationale for doing what they did to her. She's going to outlive them, and will be in care one day--whether they had this stuff done or not. (Let's definitely go one day, Tizzie)
Sixties, feeding someone is not equivalent to removing healthy organs. I also think it's important to look again at what her mental age is estimated to be--even the doctors are not absolutely certain, from what i understand. She is a 9-year-old with very severe disabilities. Next year she'll be a 10-year-old with very severe disabilities. She's not a 3-month-old, which is what her parents are determined to see her as. She hasn't been a 3-month-old since she was actually 3 months old. One thing i've learned from all this is that diagnoses of mental age are not at all infallible, and many people are/have been misdiagnosed. (that's not to say she's actually high-functioning or will ever be or anything, but it's a valid point, especially as new technology has opened up the world to so many, like the very severely autistic)
posted by amberglow at 10:47 AM on January 8, 2007
It's not defending the system so much as pointing out that the parents' irrational fears are not a valid rationale for doing what they did to her. She's going to outlive them, and will be in care one day--whether they had this stuff done or not. (Let's definitely go one day, Tizzie)
Sixties, feeding someone is not equivalent to removing healthy organs. I also think it's important to look again at what her mental age is estimated to be--even the doctors are not absolutely certain, from what i understand. She is a 9-year-old with very severe disabilities. Next year she'll be a 10-year-old with very severe disabilities. She's not a 3-month-old, which is what her parents are determined to see her as. She hasn't been a 3-month-old since she was actually 3 months old. One thing i've learned from all this is that diagnoses of mental age are not at all infallible, and many people are/have been misdiagnosed. (that's not to say she's actually high-functioning or will ever be or anything, but it's a valid point, especially as new technology has opened up the world to so many, like the very severely autistic)
posted by amberglow at 10:47 AM on January 8, 2007
Hi amberglow. Static encephalopathy is an unusual condition where a person's brain doesn't develop even though their body does. Imagine that one of your arms had stopped developing when you were three months old. Yes, in one sense your arm is the same age you are -- whether nine years old or twenty years old or whatever -- but as far as appearance and usefulness, it's three months old.
But even this isn't a good analogy. With the arm, you might imagine that you could exercise it so even though it was small, it had more capability than the arm of a typical three-month old baby. However, as I wrote earlier, Ashley's brain doesn't have all the capabilities of a normal three-month old brain since it can't acquire new information.
If a miracle does occur [which I consider 100% unlikely] then hopefully Ashley will appreciate that her parents made their choices out of love for her. All parents make choices for their children and I would guess that most of us, when looking back, wish we could change a few things but are still able to understand and, if necessary, forgive.
posted by Sixtieslibber at 12:43 PM on January 8, 2007
But even this isn't a good analogy. With the arm, you might imagine that you could exercise it so even though it was small, it had more capability than the arm of a typical three-month old baby. However, as I wrote earlier, Ashley's brain doesn't have all the capabilities of a normal three-month old brain since it can't acquire new information.
If a miracle does occur [which I consider 100% unlikely] then hopefully Ashley will appreciate that her parents made their choices out of love for her. All parents make choices for their children and I would guess that most of us, when looking back, wish we could change a few things but are still able to understand and, if necessary, forgive.
posted by Sixtieslibber at 12:43 PM on January 8, 2007
amberglow writes "Guess what? all babies dislike changes...once they learn that it allows them to see and experience the world in new ways they beg for it--even 3-month-olds. "
So you're positing that it's taken 9 years, and Ashley still cries when propped up in a wheelchair, but if they just keep at it for another decade or two, she'll certainly grow to beg for it? And that the reason she hasn't been able to move nearly enough to possibly fend off a sexual attacker for the last 9 years is just due to fear of change? So, what, her disability is just some sort of psychological block?
amberglow writes "Your child has a life to live and pleasures and pain to experience, whether you are there or not. I'm sorry you don't understand that."
This child also has a very, very limited set of pleasures that she can experience. These changes are meant to allow Ashley to experience her current levels of pleasures and pains, instead of decreased pleasures and increased pains. I'm sorry you don't understand that.
amberglow writes "Her parents did not speak or fight for her at all."
Evidence?
posted by Bugbread at 3:45 PM on January 8, 2007
So you're positing that it's taken 9 years, and Ashley still cries when propped up in a wheelchair, but if they just keep at it for another decade or two, she'll certainly grow to beg for it? And that the reason she hasn't been able to move nearly enough to possibly fend off a sexual attacker for the last 9 years is just due to fear of change? So, what, her disability is just some sort of psychological block?
amberglow writes "Your child has a life to live and pleasures and pain to experience, whether you are there or not. I'm sorry you don't understand that."
This child also has a very, very limited set of pleasures that she can experience. These changes are meant to allow Ashley to experience her current levels of pleasures and pains, instead of decreased pleasures and increased pains. I'm sorry you don't understand that.
amberglow writes "Her parents did not speak or fight for her at all."
Evidence?
posted by Bugbread at 3:45 PM on January 8, 2007
Hello again,
I just wanted to say that some of you have an awful lot more stamina than I do!!! It exhausts me to even read the statements being made by certain individuals that will NEVER try to understand what most of you know instinctively. But, it is entertaining.
Anyway, I know that I am only an expert on MY child (just as I believe Ashley's parents are experts on their child), but if any of you have any questions about living daily with a child as severely & profoundly disabled as Ashley, please feel free to ask. There is much to tell, but since this is my daily reality, I think I forget sometimes how unique our situation is.
Also, I would really like to say that regardless of the difficulties associated with my son's condition, he is a very happy, funny, & special individual. We (my family) not only make the best of our situation, we count the blessings that it has given us. We don't just care for our son's needs because it is our responsibility: We do it because we love him. He is my son Andrew. And he is a really neat person. And if he were "normal" and not so nice . . . well, I'd still love him & care for him. He is my son. And that is not "objectivication" or a feeling of "ownership." I think it's called parental, unconditional love. And again, I think that is what Ashley's parents feel for her & her siblings.
posted by xrotorgirl at 6:03 PM on January 8, 2007
I just wanted to say that some of you have an awful lot more stamina than I do!!! It exhausts me to even read the statements being made by certain individuals that will NEVER try to understand what most of you know instinctively. But, it is entertaining.
Anyway, I know that I am only an expert on MY child (just as I believe Ashley's parents are experts on their child), but if any of you have any questions about living daily with a child as severely & profoundly disabled as Ashley, please feel free to ask. There is much to tell, but since this is my daily reality, I think I forget sometimes how unique our situation is.
Also, I would really like to say that regardless of the difficulties associated with my son's condition, he is a very happy, funny, & special individual. We (my family) not only make the best of our situation, we count the blessings that it has given us. We don't just care for our son's needs because it is our responsibility: We do it because we love him. He is my son Andrew. And he is a really neat person. And if he were "normal" and not so nice . . . well, I'd still love him & care for him. He is my son. And that is not "objectivication" or a feeling of "ownership." I think it's called parental, unconditional love. And again, I think that is what Ashley's parents feel for her & her siblings.
posted by xrotorgirl at 6:03 PM on January 8, 2007
xrotor, tell me about your kid and new experiences or sensations or discovering new pleasures--do you take him all over? let him see and experience the world? feed him new foods? play different music? (or is it just about what he likes now, and that's enough?)
posted by amberglow at 6:09 PM on January 8, 2007
posted by amberglow at 6:09 PM on January 8, 2007
It exhausts me to even read the statements being made by certain individuals that will NEVER try to understand what most of you know instinctively. But, it is entertaining.
If you mean me, i believe what i do and feel this is wrong just as instinctively--deeply and fundamentally so.
posted by amberglow at 6:15 PM on January 8, 2007
If you mean me, i believe what i do and feel this is wrong just as instinctively--deeply and fundamentally so.
posted by amberglow at 6:15 PM on January 8, 2007
Also, i want to ask about physical activity--do you exercise his limbs even if he can't use or control them? Do these parents do so with Ashley? Does your kid or Ashley go for regular activity/physical therapy/etc to maintain muscle tone or any type of movement? ...
posted by amberglow at 6:18 PM on January 8, 2007
posted by amberglow at 6:18 PM on January 8, 2007
Amberglow. With all due respect--and I mean that--you really just don't get it, do you?
posted by CitrusFreak12 at 6:27 PM on January 8, 2007
posted by CitrusFreak12 at 6:27 PM on January 8, 2007
what is it you think i'm not getting? Even people in irreversible comas are exercised so they don't waste away. I saw nothing about that while learning all about the "pillow angel" who loves nothing more than laying down. I wonder.
posted by amberglow at 6:34 PM on January 8, 2007
posted by amberglow at 6:34 PM on January 8, 2007
amberglow writes "what is it you think i'm not getting?"
1) The reasons the parents are doing this (or, rather, you get them but disbelieve them, and instead believe they're doing it for different reasons, though you haven't really explained what makes you think the parents are lying).
2) The limited abilities that Ashley has.
3) The fact that Ashley's specific problem is the inability to learn new things and develop, so arguments like "she'll get used to X" or "they're taking away her ability to eventually Y" don't really apply, which is especially obvious given that she's 9 years old, and if she hasn't gotten used to something (like, say, sitting in a wheelchair) there is no evidence that more time will somehow cause her to grow used to something, but plently of evidence that it won't.
posted by Bugbread at 6:52 PM on January 8, 2007
1) The reasons the parents are doing this (or, rather, you get them but disbelieve them, and instead believe they're doing it for different reasons, though you haven't really explained what makes you think the parents are lying).
2) The limited abilities that Ashley has.
3) The fact that Ashley's specific problem is the inability to learn new things and develop, so arguments like "she'll get used to X" or "they're taking away her ability to eventually Y" don't really apply, which is especially obvious given that she's 9 years old, and if she hasn't gotten used to something (like, say, sitting in a wheelchair) there is no evidence that more time will somehow cause her to grow used to something, but plently of evidence that it won't.
posted by Bugbread at 6:52 PM on January 8, 2007
amberglow writes "If you mean me, i believe what i do and feel this is wrong just as instinctively--deeply and fundamentally so."
Which, actually, is kind of my signal to duck out of this conversation. If I'm dealing with someone who is basing their opinions on reasoned consideration of a topic, there's a point to the discussion. If, on the other hand, I'm dealing with someone basing their opinions on instinctive, fundamental feeling of wrongness or rightness, there's really no point in the discussion. And that's not just aimed at you, amberglow. I agree with xrotorgirl, but if her opinion is based on gut instinct, then there's not any point to discussing things. I'm not saying that either of you are bad or good people for your instinctual responses, just that discussion based on gut instinct never goes anywhere, so there's no point (for me) in engaging in the discussion.
posted by Bugbread at 6:57 PM on January 8, 2007
Which, actually, is kind of my signal to duck out of this conversation. If I'm dealing with someone who is basing their opinions on reasoned consideration of a topic, there's a point to the discussion. If, on the other hand, I'm dealing with someone basing their opinions on instinctive, fundamental feeling of wrongness or rightness, there's really no point in the discussion. And that's not just aimed at you, amberglow. I agree with xrotorgirl, but if her opinion is based on gut instinct, then there's not any point to discussing things. I'm not saying that either of you are bad or good people for your instinctual responses, just that discussion based on gut instinct never goes anywhere, so there's no point (for me) in engaging in the discussion.
posted by Bugbread at 6:57 PM on January 8, 2007
Thank you, bugbread, for saying exactly what I would have said if I were capable of giving clear responses.
posted by CitrusFreak12 at 7:00 PM on January 8, 2007
posted by CitrusFreak12 at 7:00 PM on January 8, 2007
I won't apologize for having baseline views on human rights and dignity. I know what the ignoring of those rights has meant this past century. "Slippery slope" is not just an empty catchphrase.
posted by amberglow at 7:10 PM on January 8, 2007
posted by amberglow at 7:10 PM on January 8, 2007
Amberglow, the main problem I have with your points so far is that the majority of them are specious, and many contain empty rhetoric.
Bugbread has already addressed many of these, however.
posted by CitrusFreak12 at 7:19 PM on January 8, 2007
Bugbread has already addressed many of these, however.
posted by CitrusFreak12 at 7:19 PM on January 8, 2007
bugbread I just have to step in here and ask why you think xrotorgirl's "opinion" is based on what you call gut instinct?
Actually, since she has a child with a similar diagnosis to Ashley, I find most of what she says to be not opinion but rather factual descriptions of her experiences with a somewhat similar situation. I don't think she is saying that everyone's experiences are the same but I value her willingness be candid and articulate in sharing hers.
posted by Sixtieslibber at 7:20 PM on January 8, 2007
Actually, since she has a child with a similar diagnosis to Ashley, I find most of what she says to be not opinion but rather factual descriptions of her experiences with a somewhat similar situation. I don't think she is saying that everyone's experiences are the same but I value her willingness be candid and articulate in sharing hers.
posted by Sixtieslibber at 7:20 PM on January 8, 2007
Thank you Sistieslibber. My main point is that ALL of us, families with or without disabled children, and especially those of us that have them, deal with such varied & different issues that NONE of us can say that we can actually "understand" Ashley & her parents' particular situation. Although my experiences may be similar & my son's diagnosis similar, I venture to guess that there are many, many differences. It is my opinion, however, that based upon my similar experience, that Ashley's parents made a choice that was good for their child & for their family. That is my opinion.
I think it's a shame, however, that expressing my feelings & emotions about my child(ren) seemed to reduce my "opinion" to one based on "gut instinct."
Anyway, here are my answers to the questions posted:
1. My kid is part of our family. He is exposed to different stimuli all the time. He goes to family functions, we take him to the Mall, amusement parks, restaurants, etc. We expose him to Life because he is always a part of our daily life. However, we know what his limitations are & what ours are. For example, he get very overstimulated in busy, noisy environments. Sometimes this causes fits ranging from agitation to outright violent anger. If he's pissed he screams, cries & bites his hands. As he has become larger & stronger, he has become very difficult to manage when he is upset. So, we have learned what triggers his agitation & we try to evaluate the risk before we make our plans. However, just like with any kid, we cannot always control where we have to be and how he will react. So, we deal with it as best we can. I will say that as he has grown, our ability to take him "everywhere" has decreased in direct proportion to his size. And that is a shame for all of us.
2. My son attends a regular High School, but he is in a self-contained classroom with children similarly disabled. He receives weekly scheduled Physical Therapy, Occupational Therapy, & Speech Therapy at school. At home we have incorporated muscle stretching & "exercise" into our everyday routine. For example, we rotate & stretch his joints & muscles when we change his diapers, bathe him, play with him, reposition him, etc. Again, I have to state that as his body has gotten bigger, this, too has gotten more & more difficult. When he was smaller we could hold him under the arms & he could weight bear on his legs & even make "walking" movements. Can't do that anymore. Also, now that he's so strong, he fights us when we attempt to make him do anything that is uncomfortable: and almost all movement is uncomfortable for my son.
Also, as I mentioned before, we don't have the equipment to help with therapy that we have had in the past. Each piece is sooooooo big & the area we need to store & use it is just not available. He used to have a walker (similar to a baby walker a 6 month old might use) & a bike that we could strap his body on & give him a ride. Not only do we not have room for these behemoths, the insurance company will no longer pay their share because my Son has reached an age where they KNOW that he will never walk. That makes the equipment medically unnecessary. Nice, huh.
Finally, my son has undergone many surgical procedures to preserve function, increase function, and/or decrease pain & discomfort. As he has gotten bigger & older, ALL of the therapy, treatment, surgery to preserve or increase function have DECREASED. The system will no longer support these things because my Son has reached the point that THEY all know that he will never improve. THEY don't seem to care, though, that decreasing these services accelerate the normal negative consequences that his growing body endures. The bottom line is that: The bigger his bones get, the shorter & tighter his muscles are & the more "deformed" his body becomes. And this is NORMAL for growing children like mine. His growing body is his own worst enemy.
My son's condition is static. His body's growth is not. Every inch causes him more pain & discomfort. Every day our ability to care for him the way we did the day before decreases. Every day my son's world shrinks as he grows. And every day makes us worry about the next. Static, my ass. We could all deal with a little "same old, same old." We know that Devil! lol
posted by xrotorgirl at 8:37 PM on January 8, 2007 [2 favorites]
I think it's a shame, however, that expressing my feelings & emotions about my child(ren) seemed to reduce my "opinion" to one based on "gut instinct."
Anyway, here are my answers to the questions posted:
1. My kid is part of our family. He is exposed to different stimuli all the time. He goes to family functions, we take him to the Mall, amusement parks, restaurants, etc. We expose him to Life because he is always a part of our daily life. However, we know what his limitations are & what ours are. For example, he get very overstimulated in busy, noisy environments. Sometimes this causes fits ranging from agitation to outright violent anger. If he's pissed he screams, cries & bites his hands. As he has become larger & stronger, he has become very difficult to manage when he is upset. So, we have learned what triggers his agitation & we try to evaluate the risk before we make our plans. However, just like with any kid, we cannot always control where we have to be and how he will react. So, we deal with it as best we can. I will say that as he has grown, our ability to take him "everywhere" has decreased in direct proportion to his size. And that is a shame for all of us.
2. My son attends a regular High School, but he is in a self-contained classroom with children similarly disabled. He receives weekly scheduled Physical Therapy, Occupational Therapy, & Speech Therapy at school. At home we have incorporated muscle stretching & "exercise" into our everyday routine. For example, we rotate & stretch his joints & muscles when we change his diapers, bathe him, play with him, reposition him, etc. Again, I have to state that as his body has gotten bigger, this, too has gotten more & more difficult. When he was smaller we could hold him under the arms & he could weight bear on his legs & even make "walking" movements. Can't do that anymore. Also, now that he's so strong, he fights us when we attempt to make him do anything that is uncomfortable: and almost all movement is uncomfortable for my son.
Also, as I mentioned before, we don't have the equipment to help with therapy that we have had in the past. Each piece is sooooooo big & the area we need to store & use it is just not available. He used to have a walker (similar to a baby walker a 6 month old might use) & a bike that we could strap his body on & give him a ride. Not only do we not have room for these behemoths, the insurance company will no longer pay their share because my Son has reached an age where they KNOW that he will never walk. That makes the equipment medically unnecessary. Nice, huh.
Finally, my son has undergone many surgical procedures to preserve function, increase function, and/or decrease pain & discomfort. As he has gotten bigger & older, ALL of the therapy, treatment, surgery to preserve or increase function have DECREASED. The system will no longer support these things because my Son has reached the point that THEY all know that he will never improve. THEY don't seem to care, though, that decreasing these services accelerate the normal negative consequences that his growing body endures. The bottom line is that: The bigger his bones get, the shorter & tighter his muscles are & the more "deformed" his body becomes. And this is NORMAL for growing children like mine. His growing body is his own worst enemy.
My son's condition is static. His body's growth is not. Every inch causes him more pain & discomfort. Every day our ability to care for him the way we did the day before decreases. Every day my son's world shrinks as he grows. And every day makes us worry about the next. Static, my ass. We could all deal with a little "same old, same old." We know that Devil! lol
posted by xrotorgirl at 8:37 PM on January 8, 2007 [2 favorites]
Sixtieslibber : "bugbread I just have to step in here and ask why you think xrotorgirl's 'opinion' is based on what you call gut instinct?"
Sorry, I said I'd duck out, but I feel I should apologize on this point: it was due to a misreading of what xrotorgirl wrote (she wrote "what most of you know instinctively", but I misread it as "what most of us know instinctively"). Sorry, xrotorgirl.
posted by Bugbread at 9:39 PM on January 8, 2007
Sorry, I said I'd duck out, but I feel I should apologize on this point: it was due to a misreading of what xrotorgirl wrote (she wrote "what most of you know instinctively", but I misread it as "what most of us know instinctively"). Sorry, xrotorgirl.
posted by Bugbread at 9:39 PM on January 8, 2007
amberglow I won't apologize for having baseline views on human rights and dignity.
Spoken like a true fanatic.
No, seriously. Having a "baseline view" on himan rights and dignity is perfectly fine, but what YOU seem have is an immunity to new information, analysis, and an understanding of individuals. What you have been doing in this thread is bringing in a whole bunch of different arguments to support your "baseline view", when they really might not apply, which is what everybody here has been trying to point out.
What you do not understand, fundamentally, is that this issue is NOT about "human rights and dignity", it is about the dignity and the rights of an individual in a specific situation with all the attendant problems and sticky issues of a gruesome, nasty, and painful reality. The reason the Ashley Treatment is CALLED the Ashley Treatment is because it was for Ashley. This is not eugenics or the Holocaust or any of the other tragedies of human rights you so tackily allude to with your "slippery slope" analogy: This is the life of a single person.
And no apology is needed, at least not to us.
posted by eparchos at 2:36 AM on January 9, 2007
Spoken like a true fanatic.
No, seriously. Having a "baseline view" on himan rights and dignity is perfectly fine, but what YOU seem have is an immunity to new information, analysis, and an understanding of individuals. What you have been doing in this thread is bringing in a whole bunch of different arguments to support your "baseline view", when they really might not apply, which is what everybody here has been trying to point out.
What you do not understand, fundamentally, is that this issue is NOT about "human rights and dignity", it is about the dignity and the rights of an individual in a specific situation with all the attendant problems and sticky issues of a gruesome, nasty, and painful reality. The reason the Ashley Treatment is CALLED the Ashley Treatment is because it was for Ashley. This is not eugenics or the Holocaust or any of the other tragedies of human rights you so tackily allude to with your "slippery slope" analogy: This is the life of a single person.
And no apology is needed, at least not to us.
posted by eparchos at 2:36 AM on January 9, 2007
I understand amberglow's concerns about eugenics, the holocaust, and the slippery slope. I understand the need to protest when "first they came for the Ashleys, and I did nothing."
Fighting for what's really best for severely disabled people is noble and good. Underestimating their potential is bad. OK, understood.
But respect what xrotorgirl is saying as well. Listen to what's behind her words, because I guarantee that she's downplaying the sacrifice that she's making every single waking moment for her Andrew.
Even though she has additional support (it seems) from her typical children, she's changing diapers on a 15 year old. She's lifting him into the bathtub - think of her back! She's pureeing food, feeding him on bite at a time, giving him sips of water ... not until he gets better! No, with the absolute knowledge that she'll keep doing this forever. She'll never get to say, "Oh, screw it. I'm taking the day off."
Think about the human rights and dignity of the caregivers. Who is speaking up for them?
posted by tizzie at 6:09 AM on January 9, 2007
Fighting for what's really best for severely disabled people is noble and good. Underestimating their potential is bad. OK, understood.
But respect what xrotorgirl is saying as well. Listen to what's behind her words, because I guarantee that she's downplaying the sacrifice that she's making every single waking moment for her Andrew.
Even though she has additional support (it seems) from her typical children, she's changing diapers on a 15 year old. She's lifting him into the bathtub - think of her back! She's pureeing food, feeding him on bite at a time, giving him sips of water ... not until he gets better! No, with the absolute knowledge that she'll keep doing this forever. She'll never get to say, "Oh, screw it. I'm taking the day off."
Think about the human rights and dignity of the caregivers. Who is speaking up for them?
posted by tizzie at 6:09 AM on January 9, 2007
We do need to worry that treatment - whatever treatment - is in the best needs of the person being treated.
From everything I have read about Ashley's situation and her treatment, I believe this was in her best interests. So did the hospital ethics board, and her doctors.
It would be good to regulate these kinds of decisions. On the radio in Britain, they were talking about how if this case were in the UK, it would have been dealt with by courts, and the child would have been represented by her own counsel. That might be a way to approach it, though I am wary of the decision resting in the hands of legal judges, whose understanding of disabilities and medical issues may not be very good.
posted by jb at 6:42 AM on January 9, 2007
From everything I have read about Ashley's situation and her treatment, I believe this was in her best interests. So did the hospital ethics board, and her doctors.
It would be good to regulate these kinds of decisions. On the radio in Britain, they were talking about how if this case were in the UK, it would have been dealt with by courts, and the child would have been represented by her own counsel. That might be a way to approach it, though I am wary of the decision resting in the hands of legal judges, whose understanding of disabilities and medical issues may not be very good.
posted by jb at 6:42 AM on January 9, 2007
In this case, 40 doctors on an ethics panel reviewed the case and the treatment and determined that it was okay. I don't know how that was handled exactly, but I think that's close to what you're suggesting, jb, a kind of medical court system where different sides are represented before radical treatments are performed.
posted by jacquilynne at 6:58 AM on January 9, 2007
posted by jacquilynne at 6:58 AM on January 9, 2007
thanks, xrotor--what you told me is what i was missing from Ashley's parents' blog. It's the lying down in a carriage thing, and "pillow angel" stuff, etc, that makes me think they're not doing what you do, world-wise.
I think we all need to make the system more responsive, and not just in terms of medical interventions like Ashley's. It's vital.
And all of us are estimated to be disabled for periods in our lives, even if it's not a permanent condition.
What you do not understand, fundamentally, is that this issue is NOT about "human rights and dignity", it is about the dignity and the rights of an individual in a specific situation with all the attendant problems and sticky issues of a gruesome, nasty, and painful reality. The reason the Ashley Treatment is CALLED the Ashley Treatment is because it was for Ashley. This is not eugenics or the Holocaust or any of the other tragedies of human rights you so tackily allude to with your "slippery slope" analogy: This is the life of a single person.
You're wrong--the very reason the parents have publicized this and named it the Ashley Treatment is so other parents can find out about it and talk to their doctors. There's no reason to discuss this at all, really, unless there are larger issues at stake and implications for all of us.
This is not just about one girl--this is unique medical experimentation and intervention on a child--a child who cannot at all speak or defend herself. The ethical debates about this would not exist unless both the doctors had published, and the parents had publicized, this.
And from what i've read, there was no one appointed as independent spokesman for Ashley at all during any discussions or board meetings--separate from her parents. (Her parents were turned down for the breast thing at first, too, and then they gave another reason after being turned down.)
The very fact we know of this at all is because of the larger issues and implications of this "treatment"--and those affect us all.
posted by amberglow at 8:09 AM on January 9, 2007 [1 favorite]
I think we all need to make the system more responsive, and not just in terms of medical interventions like Ashley's. It's vital.
And all of us are estimated to be disabled for periods in our lives, even if it's not a permanent condition.
What you do not understand, fundamentally, is that this issue is NOT about "human rights and dignity", it is about the dignity and the rights of an individual in a specific situation with all the attendant problems and sticky issues of a gruesome, nasty, and painful reality. The reason the Ashley Treatment is CALLED the Ashley Treatment is because it was for Ashley. This is not eugenics or the Holocaust or any of the other tragedies of human rights you so tackily allude to with your "slippery slope" analogy: This is the life of a single person.
You're wrong--the very reason the parents have publicized this and named it the Ashley Treatment is so other parents can find out about it and talk to their doctors. There's no reason to discuss this at all, really, unless there are larger issues at stake and implications for all of us.
This is not just about one girl--this is unique medical experimentation and intervention on a child--a child who cannot at all speak or defend herself. The ethical debates about this would not exist unless both the doctors had published, and the parents had publicized, this.
And from what i've read, there was no one appointed as independent spokesman for Ashley at all during any discussions or board meetings--separate from her parents. (Her parents were turned down for the breast thing at first, too, and then they gave another reason after being turned down.)
The very fact we know of this at all is because of the larger issues and implications of this "treatment"--and those affect us all.
posted by amberglow at 8:09 AM on January 9, 2007 [1 favorite]
Think about the human rights and dignity of the caregivers. Who is speaking up for them?
They are. They have the capability to do so, and hopefully we all support them.
It's one of the reasons national health is so vitally needed here, i think--so that we all can get the things we need for ourselves and our families. Our health system is shit, and having to rely on and fight with private insurers' financial or other decisions is not what we should be forced to deal with.
posted by amberglow at 8:16 AM on January 9, 2007
They are. They have the capability to do so, and hopefully we all support them.
It's one of the reasons national health is so vitally needed here, i think--so that we all can get the things we need for ourselves and our families. Our health system is shit, and having to rely on and fight with private insurers' financial or other decisions is not what we should be forced to deal with.
posted by amberglow at 8:16 AM on January 9, 2007
They have the capability to do so ... They do? In between the physical caregiving, the advocacy with schools, the fights with doctors and insurers, their careers?
Amberglow, offhand comments like that are the reason people in this thread think you're not being realistic.
posted by tizzie at 8:36 AM on January 9, 2007
Amberglow, offhand comments like that are the reason people in this thread think you're not being realistic.
posted by tizzie at 8:36 AM on January 9, 2007
Plus, realistically, not all parents in these situations are capable of doing the kind of research, and being the ferocious advocate that they're called on to be.
FYI, to get your child an IEP that really provides the appropriate education that their child has a right to receive, parents have to know their rights, understand complex issues, and fight school districts every step of the way. Dollars are scarce. Why should your child have physical therapy, occupational therapy, speech therapy, a nurse? How is that justifiable when they're competing with transportation for the football team to away games, or even more fundamental needs like after-school programs for latchkey kids?
Even after the IEP is in place, parents struggle to make sure it is carried out.
I guess what I am saying is that it's impossible to convey how time intensive and labor intensive this kind of parenting is.
posted by tizzie at 8:44 AM on January 9, 2007
FYI, to get your child an IEP that really provides the appropriate education that their child has a right to receive, parents have to know their rights, understand complex issues, and fight school districts every step of the way. Dollars are scarce. Why should your child have physical therapy, occupational therapy, speech therapy, a nurse? How is that justifiable when they're competing with transportation for the football team to away games, or even more fundamental needs like after-school programs for latchkey kids?
Even after the IEP is in place, parents struggle to make sure it is carried out.
I guess what I am saying is that it's impossible to convey how time intensive and labor intensive this kind of parenting is.
posted by tizzie at 8:44 AM on January 9, 2007
You're wrong--the very reason the parents have publicized this and named it the Ashley Treatment is so other parents can find out about it and talk to their doctors.
Oh, and here I thought we were discussing the treatment and its effects... not the publicity.
There's no reason to discuss this at all, really, unless there are larger issues at stake and implications for all of us.
Thank you for repeating what I said.
So, basically, we agree. Until this BECOMES an issue, you can just get back on your horse and ride off into the sunset. I recommend borrowing a tall ladder.
posted by eparchos at 9:02 AM on January 9, 2007
Oh, and here I thought we were discussing the treatment and its effects... not the publicity.
There's no reason to discuss this at all, really, unless there are larger issues at stake and implications for all of us.
Thank you for repeating what I said.
So, basically, we agree. Until this BECOMES an issue, you can just get back on your horse and ride off into the sunset. I recommend borrowing a tall ladder.
posted by eparchos at 9:02 AM on January 9, 2007
thanks, xrotor--what you told me is what i was missing from Ashley's parents' blog. It's the lying down in a carriage thing, and "pillow angel" stuff, etc, that makes me think they're not doing what you do, world-wise.
I wanted to clarify a glaring difference that seems to exist between my Andrew & Miss Ashley. My son is spastic quadraplegic. He has spastic or "rigid" muscle tone in all four limbs. The tone in the rest of his body fluctuates between rigid & "flaccid" (loose) tone. It appears that Ashley has predominately flaccid tone throughout her body. That's what brings about the differences in body positioning & even the nicknames that we might give our child(ren).
If you think about the difference between a bean bag type Raggedy Ann doll and a Barbi doll of the same size, that's kinda what the difference in body/muscle tone might be between our kids. A flaccid tone child is very difficult to prop up in a sitting position & even if you can do it, then you have to deal with the heavy, lolling head. A spastic kid might be easier to prop but then you've got to fight the stiffness in the arms, legs, hips, etc. And again you have to find a way to deal with the heavy head flopping around on a neck that can't support the weight.
Anyway, I hate to compare our kids to inanimate objects, but sometimes a sight picture helps.
So, Ashley becomes a "Pillow Angel" and Andrew is the "Stick Man."
posted by xrotorgirl at 9:33 AM on January 9, 2007
I wanted to clarify a glaring difference that seems to exist between my Andrew & Miss Ashley. My son is spastic quadraplegic. He has spastic or "rigid" muscle tone in all four limbs. The tone in the rest of his body fluctuates between rigid & "flaccid" (loose) tone. It appears that Ashley has predominately flaccid tone throughout her body. That's what brings about the differences in body positioning & even the nicknames that we might give our child(ren).
If you think about the difference between a bean bag type Raggedy Ann doll and a Barbi doll of the same size, that's kinda what the difference in body/muscle tone might be between our kids. A flaccid tone child is very difficult to prop up in a sitting position & even if you can do it, then you have to deal with the heavy, lolling head. A spastic kid might be easier to prop but then you've got to fight the stiffness in the arms, legs, hips, etc. And again you have to find a way to deal with the heavy head flopping around on a neck that can't support the weight.
Anyway, I hate to compare our kids to inanimate objects, but sometimes a sight picture helps.
So, Ashley becomes a "Pillow Angel" and Andrew is the "Stick Man."
posted by xrotorgirl at 9:33 AM on January 9, 2007
amberglow wrote thanks, xrotor--what you told me is what i was missing from Ashley's parents' blog. It's the lying down in a carriage thing, and "pillow angel" stuff, etc, that makes me think they're not doing what you do, world-wise
WTF???!!!
You assumed that their daughter survived for nine years without their changing her diapers, washing her, caring for her skin, exercising her, taking care of medical issues, etc.? Come on. There are many pictures of Ashley on the parents' blog, even ones of her propped in a wheelchair and in a swing. She's wearing pretty clothes and her hair is arranged nicely and you can see that her skin is clear.
You assumed that a panel of 40 bioethicists and other specialists wouldn't have at first considered that the parents were already meeting standard of care before they approved special treatment?
The parents did state:
Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.
The blog is primarily about what they did that was unusual. I guess they assumed that a person of normal intelligence would know that if they had left Ashley in the same position for nine years she wouldn't have survived.
posted by Sixtieslibber at 9:43 AM on January 9, 2007
WTF???!!!
You assumed that their daughter survived for nine years without their changing her diapers, washing her, caring for her skin, exercising her, taking care of medical issues, etc.? Come on. There are many pictures of Ashley on the parents' blog, even ones of her propped in a wheelchair and in a swing. She's wearing pretty clothes and her hair is arranged nicely and you can see that her skin is clear.
You assumed that a panel of 40 bioethicists and other specialists wouldn't have at first considered that the parents were already meeting standard of care before they approved special treatment?
The parents did state:
Ashley goes to school in a classroom for special needs children, which provides her with daily bus trips, activities customized for her, and a high level of attention by her teachers and therapists.
The blog is primarily about what they did that was unusual. I guess they assumed that a person of normal intelligence would know that if they had left Ashley in the same position for nine years she wouldn't have survived.
posted by Sixtieslibber at 9:43 AM on January 9, 2007
You assumed that their daughter survived for nine years without their changing her diapers, washing her, caring for her skin, exercising her, taking care of medical issues, etc.? Come on. ... I guess they assumed that a person of normal intelligence would know that if they had left Ashley in the same position for nine years she wouldn't have survived.
No. And i never said that either. Put words into your own mouth, and go insult people elsewhere. I'm not being an ass to you---there's no reason for you to be one.
The parents said she doesn't like being in a wheelchair. The parents spoke extensively and repeatedly on how all she likes is to lay down--in a carriage or a bed, and how they want her on their lap, etc--over and over. A "person of normal intelligence" might naturally assume that they're encouraging passivity, since she likes it. That's not the best thing for a child--any child--disabled, frozen, or not.
posted by amberglow at 2:46 PM on January 9, 2007
No. And i never said that either. Put words into your own mouth, and go insult people elsewhere. I'm not being an ass to you---there's no reason for you to be one.
The parents said she doesn't like being in a wheelchair. The parents spoke extensively and repeatedly on how all she likes is to lay down--in a carriage or a bed, and how they want her on their lap, etc--over and over. A "person of normal intelligence" might naturally assume that they're encouraging passivity, since she likes it. That's not the best thing for a child--any child--disabled, frozen, or not.
posted by amberglow at 2:46 PM on January 9, 2007
Even their special nickname for her is a passive one.
posted by amberglow at 2:51 PM on January 9, 2007
posted by amberglow at 2:51 PM on January 9, 2007
Amberglow: She can't friggen move. She can wave her arms, but thats about it. Are you implying that she is like this because her parents encourage it in her? Yes, let us blame the parents. Next, lets get all morally upset at the parents of parapalegics for not doing "all they can" to get their child to walk on their own two feet. It makes just as much sense.
Why the hell am I arguing with you about this.
You're not ever going to change your mind. You're being completely obtuse and I think it's very ignorant of you. And that's all I have to say anymore.
Thank you to everyone who tried to deal with amberglow reasonably, and made valient efforts and great points in the process. But as you can see, Ashley has a better chance of improving than amberglow does of changing his position.
posted by CitrusFreak12 at 4:09 PM on January 9, 2007 [1 favorite]
Why the hell am I arguing with you about this.
You're not ever going to change your mind. You're being completely obtuse and I think it's very ignorant of you. And that's all I have to say anymore.
Thank you to everyone who tried to deal with amberglow reasonably, and made valient efforts and great points in the process. But as you can see, Ashley has a better chance of improving than amberglow does of changing his position.
posted by CitrusFreak12 at 4:09 PM on January 9, 2007 [1 favorite]
You insulting me is certainly not doing it, darling. You have a nice day too.
posted by amberglow at 5:54 PM on January 9, 2007
posted by amberglow at 5:54 PM on January 9, 2007
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