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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.
posted by allen.spaulding (221 comments total) 3 users marked this as a favorite

yeah, that was a typo. I contacted Jessamyn to fix it.
posted by allen.spaulding at 5:19 PM on January 3, 2007

I guess they never saw Interview with the Vampire.
posted by b1tr0t at 5:23 PM on January 3, 2007 [1 favorite]

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

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 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

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

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

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

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

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]

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

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

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

"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

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

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

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 [4 favorites]

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.
posted by odinsdream at 6:40 PM on January 3, 2007

"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

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 [1 favorite]

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

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

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

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

" . . . 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

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

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

cotterpin: 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.

The only benefit I see is that it makes her easier to care for. That's great, but I also cannot justify to myself why it's morally acceptable to choose this procedure simply to make care easier. Even if care is insanely hard as it is.
posted by odinsdream at 7:30 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

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

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

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]

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]

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

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

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

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.

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

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

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

Why is the removal of her uterus required?
posted by phrontist 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

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

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

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

Argh. Beat me to it.
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

Wow, four of us just answered that.
posted by oaf at 8:46 PM on January 3, 2007

OK, five now.
posted by oaf 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

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 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

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

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

...convenience...

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

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

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

Can this be done to puppies?
posted by redteam at 11:07 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

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

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]

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

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

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

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

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

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

Think of how much the vain nouveau riche houswives of Orange county would pay to keep themselves all cute and cuddly...

OC already feels a city-sized strip club. It is only a matter of time before the place is packed with anime girls.
posted by b1tr0t at 8:45 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

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

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.

If Ashley does have the mental age of a 3 month old baby and can never develop beyond that then it is unrealistic to call her a person, or talk about her dignity or autonomy. At best, she can be dressed up to appear to other people to have dignity and autonomy, but without further mental development, she is somewhere between a living doll and a pet. A fully grown labrador retriver has more dignity and autonomy than a three year old baby.

I'm not irate about her parents' decision. I don't think Ashley is a person, and therefore the decision to limit her growth and development is morally equivelant to docking the ears of a dobermann.
posted by b1tr0t at 10:17 AM on January 4, 2007 [1 favorite]

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]

I am absolutely serious. If there is no possibility of the girl developing beyond a mental age of three months, then I cannot consider her a person. She may look like a person, her parents might dress her up like a person, but she has less mental ability than a pet dog.

It is possible that the doctors are wrong, that the girl's mind may develop extremely slowly. It could be that case that her actual mental state is more like that of an autistic person, she just can't control her body. If any of these possibilities are the case, then she might be able to develop into a person.
posted by b1tr0t at 10:55 AM on January 4, 2007

By that logic, an actual 3 month old is also not a person.
posted by jacquilynne at 10:59 AM on January 4, 2007

Sure, but an actual 3 month old can reasonably be expected to develop into a person.
posted by b1tr0t at 11:01 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

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]

After a great start, this thread has turned into unintentional parody. Fascinating.
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

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

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

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

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

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

(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]

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

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

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

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

what happens when the parents die?
posted by amberglow at 6:36 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

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

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

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

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

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

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

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

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

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]

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

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

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

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

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

Hmm, let's try this again: Three generations of imbeciles are enough.
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

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]

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

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

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 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

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

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

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

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

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

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]

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

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

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

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

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

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

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

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

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

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.
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

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

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