This is topic Surgery to stunt growth of disabled child was illegal; UPDATE: report, news story out in forum Books, Films, Food and Culture at Hatrack River Forum.
quote:The treatment includes growth attenuation through high-dose estrogen therapy, hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.
I can understand the hysterectomy. She will never be able to consent to having children, so the whole process seems unnecessary for her. Further, there is pain associated with that. Stunting her growth... well, I don't know. Initially, it sounds awful but I can understand their argument.
What I find completely unconvincing is their argument for bud removal. Since the parents clearly have no problem with surgeries, they could always have a breast reduction surgery if the breasts became large enough to be truly uncomfortable. It seems more like they want to keep their daughter from looking like an adult, and instead have her perpetually look like a child. In my mind this discredits a lot of their other claims.
Posted by lem (Member # 6914) on :
quote: What I find completely unconvincing is their argument for bud removal. Since the parents clearly have no problem with surgeries, they could always have a breast reduction surgery if the breasts became large enough to be truly uncomfortable. It seems more like they want to keep their daughter from looking like an adult, and instead have her perpetually look like a child. In my mind this discredits a lot of their other claims.
I am uncomfortable with the precedent this (the collective procedures) sets, however I sympathize with this particular case.
I do not think bud removal invalidates their claim. They covered their rational throughly on their website. It seems they were motivated by their concern for Ashley, not any selfish reason.
quote: Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.
quote: This surgery was done with small incisions below the areola, the slight scars almost disappeared a month after the surgery. This operation is akin to removing a birthmark and is a very different surgery from a mastectomy on an adult woman with developed breasts.
quote: We overcame this reluctance by detailing the benefits above, recounting Ashley’s family history of breast problems, and pointing out the fact that the same procedure is commonly provided to males for cosmetic reasons and to mitigate unwanted breast development (Gynecomastia).
The parents also listed several secondary benefits on the site.
Posted by Tara (Member # 10030) on :
The article didn't make clear how aware Ashley was of all this. Did she have enough presense to mind to understand, at least a little bit, what was happening to her, and did she in some way consent to this? Will she be aware, later in life, how much smaller she is than other people? Or is she so severely brain damaged that none of that will matter to her?
Posted by katharina (Member # 827) on :
I think it is the last - she is so severly brain damaged she is not aware of the differences.
Posted by Jon Boy (Member # 4284) on :
In another article I read, they said that she is as mentally developed as a three-month-old baby.
The story is certainly strange and shocking at first, but it sounds to me like her parents have put a lot of thought into this. But reading through their site, I'm not convinced that it's solely for her benefit and not for her caregivers' convenience.
Posted by lem (Member # 6914) on :
quote:I'm not convinced that it's solely for her benefit and not for her caregivers' convenience.
We really can't determine that tho because anything that is for the caregivers' convenience will be for her benefit.
Let's look at the size issue. Being smaller she certainly will be easier to bath, change, move around to avoid bed soars, lift, and take places.
If it is easier for one adult to do this, then how many additional opportunities will Ashley have to participate in group functions at a greater level if her body matches her mental development?
She will be more included and better cared for. Sure the parents could tag team and keep her involved. But what about the grand parents? What about other children? Family? Relatives? Over the long run between two children it seems very reasonable that, all things being equal (like love and devotion), the child who is easier to manage will be included more.
Like I said, I don't like the precedent. The case makes me uncomfortable. But I think it is unfair to question the parents' motives.
They are providing for her, caring for her, including her, and sought out the the best medical advice. They agreed to an ethical committee. The operations matched their reasons for the operations. Their reasons are consistent with the type of quality care they want their child to receive throughout her life.
Ashley will never mentally develop past a 3 month old. To assume she will be happier by not dealing with adult issues like menstruation and being small enough to do what infants do doesn't seem selfish.
You might disagree. Legally I still have in "ick" factor going on. However, I don't think you can accuse the parents of being anything but rational, devoted, and loving--even if you disagree with their decision.
Posted by Bella Bee (Member # 7027) on :
quote:What I find completely unconvincing is their argument for bud removal. Since the parents clearly have no problem with surgeries, they could always have a breast reduction surgery if the breasts became large enough to be truly uncomfortable. It seems more like they want to keep their daughter from looking like an adult, and instead have her perpetually look like a child. In my mind this discredits a lot of their other claims.
My immediate thought was that the parents may be worried about future sexual abuse. If her parents ever get to an age where they can't care for her any longer and have to submit her to institutional care after all, that might be a concern. In the case of a completely helpless, now tiny, mentally impaired woman, who had any secondary sexual characteristics, that would be my fear for her.
I find this story incredibly sad. For most people, it is the delight of watching their children grow up, become independant, become new adults, which one of the most exciting parts of having a child. Sure, they may regret the loss of their baby, but the new person their kid has become makes up for that. These people are never going to have that for their daughter.
I hope that the parents had enough medical advice to come to this decision rationally and logically. Yet if this girl has the mental capacity which is claimed, the most important concern is that she is happy, well cared for, and loved - and whatever the pros and cons, her parents do seem to have done these things to her in order that her quality of life will be improved.
[ January 04, 2007, 06:29 PM: Message edited by: Bella Bee ]
Posted by The Pixiest (Member # 1863) on :
I have no problems with this. She will never develop enough to know the difference and this will keep her conciderably more comfortable and will make it easier for her to receive comfort and affection from those who love her.
What could possibly be wrong with that?
Posted by SoaPiNuReYe (Member # 9144) on :
quote:Originally posted by The Pixiest: I have no problems with this. She will never develop enough to know the difference and this will keep her conciderably more comfortable and will make it easier for her to receive comfort and affection from those who love her.
What could possibly be wrong with that?
I agree.
Posted by Ryuko (Member # 5125) on :
I think the problem is the implication and the whole slippery slope idea. If this is OK, why not keep someone with Down's syndrome at the right size for their mental age? It cuts down on the risk of a Down's syndrome patient hurting someone because they don't know their strength. I don't know, something about the whole concept seems wrong to me. For this particular family, it works, but I feel that if it became a valid care option it would be a little too much.
Posted by Boris (Member # 6935) on :
I think what lem is most worried about is the fact that this individual case sets a precedent that can be used later on to justify similar actions to other mentally disabled children. I can imagine that not all similar cases would have circumstances that are as clear-cut as this case seems to be.
Posted by Amanecer (Member # 4068) on :
quote: Furthermore, breasts impede securing Ashley in her wheelchair, stander, or bath chair, where straps across her chest are needed to support her body weight. Before the surgery Ashley had already exhibited sensitivity in her breasts.
I did read this, but it didn't seem like it would be a massive deal unless she developed very large breasts. But then again, I've never needed to be strapped in to things by my chest on a regular basis. So I don't know.
lem, you're probably right that it's best to give the parents the benefit of the doubt.
Posted by erosomniac (Member # 6834) on :
This whole story, regardless of the parents' motives, makes me want to cry.
Posted by ClaudiaTherese (Member # 923) on :
I'm interested in reading sndrake's take on this, should he want to share it.
It isn't a new issue by any means, but it is certainly one that is (and should) be highly troubling and controversial. The precedent, if nothing else, is (as mentioned above) likely to open up a real can of worms.
Posted by ElJay (Member # 6358) on :
I don't have particularly large breasts, and if I had to be strapped into something with chest straps all waking hours it would be very uncomfortable. I'm not sure how I feel about the entire matter yet, but removing the breast buds and the hysterectomy initially seem more beneficial and less harmful to me than the stunting of her growth. I cannot imagine the horror of having a monthly period for 40 years without being able to understand what is going on and why.
The line about family history of breast problems also makes me wonder if they're talking about breast cancer, or large breasts that would cause pain/backaches. If those types of problems run in the family, I can see that as a strong arguement to them. Again, not sure if I agree with it yet. The story and the situation make me sad.
Posted by Kasie H (Member # 2120) on :
The AP story said the family had a history of breast cancer, which was part of the motivation for removing them.
Posted by ReikoDemosthenes (Member # 6218) on :
I am torn on this issue... On one hand, I think that the family are honestly doing their best or what they believe to be best for her. And I do not feel repulsed by the notion of what they are doing, not hugely, anyway. However, I do get anxious at the idea that this might be made the standard and I do not trust that that would be for the best in all or even most situations if that becomes the case.
Posted by sndrake (Member # 4941) on :
I know the incoming president of the American Association on Intellectual and Developmental Disabilities (formerly the Amer. Assoc. on Mental Retardation). Below is an excerpt from a response from the organization that he tells me will go up on their website. It's an expanded version of a letter that will be published in the journal that published the report of this series of medical procedures on this young girl:
quote: The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their “most admirable of undertakings.” However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current case, yet they did not seem to receive the attention they deserved.
With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications. By extension, if weight ever becomes a difficulty due to age-associated loss of strength for the parents (rather than obesity of the child), then the rationale would suggest that bariatric surgery or severe restriction in caloric intake would be a form of therapy. If that proves insufficient, the goal of reducing the size of the child could be addressed by “amputation-therapy,” justified by the fact that the patient would never be ambulatory in any event. Should the child develop behaviors that increased the stresses of care-giving, then it should be perfectly acceptable to prescribe whatever dosage of psychoactive medication would be necessary to bring relief to the caregivers.
It seems painfully obvious that practice can rapidly degenerate if the anxieties of the parents about an uncertain future replace the medical status of the child as the immediate focus, even with the noblest of intentions of all parties involved. There is an enormous potential for abuse here, and given the history of neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy. It is better that this door be left closed.
I agree with AAIDD.
BTW, CNN provided some pretty good and highly critical coverage of this issue tonight. The bad news is that it was done by Nancy Grace.
Posted by Dagonee (Member # 5818) on :
I was hoping you'd respond, Stephen. Thanks for posting that.
I don't have a fully formed opinion on this. But "What could possibly be wrong with that?" and the ready agreement with the sentiment really bothers me.
As CT said, this should be "be highly troubling."
The parents and doctors have decided that this girl should be a different size than she would naturally attain and should have her uterus and breasts removed, with no life-threatening emergency involved here at all.
I would guess most people find it fairly abhorrent that people used to give girls high doses of a powerful hormone simply to fit them to a more socially acceptable height. Surely, the motivations involved here are on a much higher moral plane than the motivations for height reduction as a cosmetic procedure.
I think, though, that utterly frivolity of the cosmetic use form the 60s hides the true nature of the wrong done to those girls. Either parents took it upon themselves to deny these girls their natural height, or the girls were convinced this was a better idea by the standards of society. Either way, the underlying harm was that other people were defining the value of these girls as human beings.
The same danger exists here. Although I truly believe the parents think that this "treatment" results in a better quality of life for their daughter, much of that better quality of life is derived from how their daughter's size affects them. Maybe there is no better way. But the mere fact that we are cutting pieces off of her and giving her hormones to lock her into this size permanently ought to be setting off shrieking alarm bells for us.
The possibilities of wrong associated with those acts aren't questionable. We have now seen significant, life-altering medical procedures be used so that someone is more manageable for their caregivers. Whether that means they will have a better quality of life or not, we should be frightened of the possibilities here.
I know several women who both swear that they will never have children and complain about their periods. None of them, to my knowledge, has gotten a hysterectomy, even though they are perfectly capable of choosing this for themselves and would suffer less chance of cancer and no more periods if they did.
I might - might - be able to be persuaded that the wrongs caused by not stunting growth and removing body parts make the wrongs caused by doing so the morally better choice. But I can never be persuaded that there's nothing wrong with doing it.
Posted by ketchupqueen (Member # 6877) on :
I am not sure I completely agree with the AAIDD position posted. It seems to me that some cases are on or slightly over the line we should not cross-- and some are so far that "the line is a dot." I don't think it's fair to assume that because the first type happen that something of the second type will someday happen, and I think it shows a profound lack of faith in humanity if we really believe it ever will.
I feel rather the same as Dags; confused and conflicted come to mind when I think of my feelings on this.
(Although, I do know three women who never want children and didn't like their periods-- well, they had other problems, too-- and had elective hysterectomies.)
Posted by MyrddinFyre (Member # 2576) on :
The idea kinda freaks me out... the only argument that really reaches me is that there's more dignity in keeping her physically closer to her mental age. And that's the most vague, crazy argument they made. I just couldn't help thinking that everything else they said was to make their lives easier. But then, they didn't really elaborate on Ashley's condition so it's hard for me to make my own opinion on what would be beneficial to her. I don't necessarily feel angered by The Ashley Treatment, even though it weirds me out. I just hope it continues to benefit instead of hinder Ashley as the years go on.
Posted by Shigosei (Member # 3831) on :
I think I'm more concerned about the growth-stunting. We have some amount of experience with hysterectomies and mastectomies, and we know it's reasonably safe. And it sounds like she will never be able to take advantage of either. Many women will develop breast cancer at some point. This may spare her the pain of a full mastectomy later--particularly since she won't be able to detect breast cancer herself. And she probably is not in any condition to have children, and a uterus is really not good for anything else but causing problems.
Posted by quidscribis (Member # 5124) on :
Back when I was twelve, my father had four brain aneurysms. He was in a vegetative state for a few months, then he started getting better. He had to be taught to read, write, use the bathroom, walk, go up and down stairs, and so on. He had to relearn everything, and that took a lot of time.
He's not a huge man, but still, at just over 6' tall and 165 lbs, when his brain function was essentially that of a baby in diapers, he was difficult for my oldest brother, 6'2 and 220 lbs, to manage. For pretty much everyone else, it took at least two people until he was recovered enough from the brain damage to be able to help.
Even then, as his strength improved and he could walk again, he was still problematic, but in different ways. For example, he went to the CNIB shop in the basement and stole cigarettes. (My brother gave the CNIB shop guy money to cover it every week, but still.) My father smoked in his hospital room and even set the curtains on fire a couple of times. He got into fights with the orderlies, physiotherapists, nurses, whoever. Not because he disagreed with something - he didn't have the intellect for that at that point - but because he was being stubborn and didn't want to.
He was extremely difficult to manage, and at times, even dangerous.
This isn't the same as Ashley's situation. Ashley will likely never get as large as my father, nor will she ever developmentally improve. She won't be strong enough to fight or resist.
But given what I know of dealing with a brain damaged adult and knowing how difficult it was, how wearing it was, and how much brute strength it can require, I can see their points. I'm not entirely comfortable with the decision the parents made, but I can understand it in my own limited way.
Posted by Belle (Member # 2314) on :
You know, a hysterectomy is not something that should be done lightly. Or for convenience. It's a serious operation, with profound effects on the woman's body, especially if we're talking about accompanying oopherectomies (removal of the ovaries too.) I'm not sure if the parents had an oopherectomy done on Ashley as well, but even if it was just removal of the uterus, I'm uncomfortable treating it as a "disposable" organ that can be just thrown out to avoid the inconvenience of periods.
I can't exactly articulate why that idea bothers me so badly, but it does. I'm finding myself having really strong reactions to some of the things said in this thread and I've re-written this post several times because it's been coming off angry and snarky. I don't why I'm so bothered and I can't really muster a good argument against the parents' reasonings (please note I sympathize with them, very much) but the idea that the reproductive organs and sexual characteristics that make an adult woman an adult woman can be just cast aside for the sake of convenience - it upsets me. Again, not sure why. Not sure that it's even a bad idea in Ashley's case. But this comment in particular got under my skin:
quote:And it sounds like she will never be able to take advantage of either.
Maybe because it suggests (to me) that the organs and characteristics that are fundamentally feminine are of no value unless the woman in question is going to have sex and procreate. So her femininity doesn't matter...because she won't ever "use" it. So it's better to keep her in a almost genderless state, without adult sexual features rather than "waste" her femininity. And the main reason, regardless of what they say, certainly feels to me as if it's motivated by the desire on the parents' part to make their own life easier.
I'm not saying that's really what's going on in the parents' mind, or that it is what Shigosei meant by that quote...just saying that's the vibe I'm picking up and I'm uncomfortable with it. Maybe it's my problem.
Posted by Eaquae Legit (Member # 3063) on :
This is... profoundly troubling to me.
I'm sitting here thinking over and over of the faces and bodies I know. Just playing them over and over and over, as if on a reel. I'm thinking about my life, my job, my past, my future. I'm not sure of what I want to say, or if it will come out right, so please, bear with me and I will do my best.
The first few things that come to my mind: 1. Either I'm imagining things, or they've got the wrong chest strap for her. I've seen the male model and the female, and a lady who got the male model by mistake. Man, it looked uncomfortable. The female model isn't so bad. (Yeah, I tried it. I like having the experience of what I am doing to/for my clients.) 2. How is this different from the forced sterilisations in the early 20th century that are generally decried nowadays? 3. She's not a three-month-old. Her mental capacity should not be used as a marker for her physical and experiential age.
Thoughts after reading the comments here: 1. I generally agree with Dag, CT, and Stephen.
Elaborations:
I am not outraged, angry, or disgusted. I am troubled, sad, and confused.
I don't think this should have happened.
I understand her parents' feelings, their fears and their hopes. I know how hard it is to take care of a fully grown adult with little or no motor control. It's hard, and sometimes literally back-breaking.
My heart goes out to them as they look to the years ahead and the sacrifices they'll have to make for the well-being of their daughter. So many of my clients' parents suffer great emotional pain and guilt because of their inability to care for their children themselves. I understand what it does, to put your child into the care of a home or institution, no matter how high quality the care she'll get.
Yet I can't shake the feeling of deep sadness I have. It is entirely possible, with the right supports, to give people with similar conditions as normal a life as possible. That's been the mantra I've known, since Day One, almost five years ago (has it really been that long?!). My role as a caregiver is to help my clients to have the most normal life possible.
Like I mentioned above, there are female chest straps for wheelchairs. There are special comfy chairs that provide relaxation and comfort even for people who spend all day in a wheelchair. There are mechanical lifts of numerous design which enable even one fairly weak person (like me) to move a full-grown adult body. There are bathtub modifications. There are community support options and respite care providers. I know they say "We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers," but I am one, and so I know that they are entirely findable.
Few things sicken me more than the abuse of people with severe disabilities. That said, caregiver screening is much more intense and ongoing than it was even in the recent past. I know there are people out there who are sick enough that they'll abuse their clients, but I do doubt that the presence or absence of breasts would have much of an effect. If they're going to abuse, Ashley not having large breasts isn't going to protect her. I honestly don't think that people in institutions are abused for sexual reasons. It's simply because they're there and they can't defend themselves. Removing her breast buds won't help Ashley protect herself in the slightest.
I think her parents have only the best motivations. I think they're somewhat blind to their options. I think that, like very many parents, their hesitation at entrusting Ashley to anyone outside of the family is understandable. I think they are wrong, and that there are many wonderful, kind, giving people in the personal support profession who are capable and qualified to give them aid. I think they are foolish to close the door to that option, and that it only does her harm.
But I can understand.
I disagree with what they have done. At this point, I'm not able to articulate myself very well.
This Dr. Dvorsky, on the other hand, him I'm not so keen on.
quote:“If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity. Nor do I believe this is somehow demeaning or undignified to humanity in general; the treatments will endow her with a body that more closely matches her cognitive state – both in terms of her physical size and bodily functioning. The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”
Whether she lacks the capacity to understand indignity is irrelevant. She is a human being and must enjoy the exact same rights and dignity that "normal" people do. As I've said before, she is not three months old. She's 9. Someday, she will be 15. 30. She will still not be three months old. She will have the mind of a 30 year old who has the capacity of a three month old. That may seem like a ridiculous thing to say, but it's true. There is nothing grotesque about a 30 year old having a 30 year old's body. It is an indignity to her to insist that she must remain a child.
Again, I'm sorry if this post was incomprehensible. It's late, I'm tired, but I had to post.
Posted by Orincoro (Member # 8854) on :
quote:Originally posted by Ryuko: I think the problem is the implication and the whole slippery slope idea. If this is OK, why not keep someone with Down's syndrome at the right size for their mental age? It cuts down on the risk of a Down's syndrome patient hurting someone because they don't know their strength. I don't know, something about the whole concept seems wrong to me. For this particular family, it works, but I feel that if it became a valid care option it would be a little too much.
Slippery Slope arguments are designed, quite specifically, to avoid the positive merits of a specific case in favor of an elusive subjective argument about cases in general. Imho, slippery slope arguments are inherently flawed for this reason: because they impose an interpretation of one action or situation (this case) and imply that this interpretation will be necessarily connected with all similar cases, and therefore a decision in favor of the treatment in THIS case will be a decision toward treatment in ANY other case.
We encourage this tendency in all facets of our lives, at first responding to "trends" and "precedents" that are apropos to a situation, then believing that trends and precedents are the ONLY function of decision making. But they are not. As the article quotes:
quote: It's very natural for people hearing about this case to have an initial sort of, 'You're kidding me ... how could you do this?'
The need of the author of the article to quote this line, as well as the need of the quoted person to say it so emphatically as to have it repeated in an article, is one of what I believe is called "showing behavior." The writer of the article and the quoted feel it necessary to tell the audience how it should feel. I didn't feel that way, but the article or the quoted person attempts to convince me, by establishing an acceptable opinion based on what "everyone" thinks.
I didn't feel that way from the very first second, and I don't think everyone does. I don't even think most people do. I wanted to know more, and I quickly read the facts and established the situation in my mind, I weighed the benifits, I weighed the downsides, I found the decision to be difficult, but I agreed with it. This does NOT a Slippery Slope make. Deliberate and careful decisions DO NOT make Slippery Slopes, they CAN'T they are deliberate and thoughtful choices.
It is only rash and quick decisions that breed more rash and quick decisions- that's how people get in trouble, but even a rash and quick decision BASED on this precedent will still be IN ITSELF responsible for any wrongdoing in another unrelated case. The idea that the "Slipper Slope" exists in any way is to mask the real argument, and assure one's self that his or her own decisions are based on good reasoning, which SHOULD be discernable anyway.
I can easily, I DO ALL THE TIME, make decisions which seem, at a surface level, to be contradictions or "slippery slopes." For instance I may choose tomorrow to not go to school because my back hurts. This decision is based on the moment and affected by what I need to accomplish at school, plus how much my back hurts and the fear that it may get worse. This decision does NOT necessarily make it easier for me to skip classes next week, when I will have responsibilities and quizzes I can't miss. In short, I am not establishing a slippery slope because slippery slopes are fantasy based, necessarily, on gross assumptions that never actually end up being the things that really guide our decisions.
What these parents decide is what these parents decide, it makes it no less likely that any parent would do such a thing. The article even recalls that 50 years ago, young women were treated with this for BEING TALL! Did that scary trend turn into a common practice? NO! The overall social trends (which reflected a positive adjustment in our attitudes to body image and social norms) eliminated this practice until it became history to be recalled in an article. Why wasn't THAT a Slipper Slope? Because greater forces always guide our decisions and our evolution as a society- these cases are just imperfect focal points that we choose to "represent" the issue, even if all they represent in reality is themselves.
Sorry for the long response, but I feel this is SO obvious and yet NEVER talked about in our society. We all walk around talking about the "lowest common denominator" and "slippery slopes" as if they are things we don't contribute to because we are enlightened, and yet we assume that most people couldn't make the right decision without us generalizing the heck out of their lives. ARG!
Let's Communicate people
And if you disagree with me about this being the right decision, I think that's even MORE proof that Slippery Slopes are idiocy. Obviously if this was the wrong decision, you spotted it yourself (hopefully without the helpful article telling you how to feel). If you felt that way fine: you are not going to let it effect your own decisions and it isn't a slipper slope, it's a non issue as far as you and like minded folks are concerned.
AND, btw, if you think this situation, with no direct effect on your own life, is a Slipper Slope, then you probably also think that a hypothetical situation with the same circumstances is also a slippery slope, right? I mean the situation has no bearing on you whatsoever, nor on anyone but the people involved, until you start letting the way that other people feel about it effect your life. In that case, all the actual "effects" of this case are the opinions people form on it and the way that people act based on those opinions. BUT if those people form opinions either in favor of or against this issue, then they ALREADY felt that way, or had that decision within them. A hypothetical situation to test and solidify their stance would have done the same thing as the real one we are reading about. In fact this situation could, for all I know be a fabrication, in which case it IS a thought experiment which others on this forum are arguing has relevance in their lives. I believe it is relevant to think about, but DON'T make arguments about what other people's opinions must necessarily be, that's just useless, and mean!
Ryuku- None of that was an attack on you, I was just using your mention of the slippery slope to start out my tangent and outrage with the concept. I believe good people can believe in Slippery Slopes, I just think their probably wrong.
[ January 05, 2007, 05:36 AM: Message edited by: Orincoro ]
Posted by Lavalamp (Member # 4337) on :
I thought of the "amputation therapy" angle when I first read the article and I'm glad to see the AAIDD at least mention that.
I have a question at this point though:
The "quality of life" is being used to justify the treatments given to this child. When it comes to the disabled in our society, much is made of this kind of thing. It's how some people justify taking out feeding tubes, for example. It's the core theme behind the end of that boxer movie where the woman is paralyzed.
Places like Not Dead Yet, where sndrake works, challenge us to rethink our pre-conceptions on quality of life.
So, here we have a case where a girl is seriously limited in movement, communication, and cognition. She's got some basic emotions she can express (apparently -- the family mentions boredom as her biggest problem).
Here's MY conflict:
If I'm not ready to take over care-giving for THIS child, what right have I got to tell this family that what they are deciding is wrong? I'm not the one who has to deal with whatever difficult-to-handle behaviors she emits when "bored." I'm not the one who had to figure out what "bored" means for a person in her situation.
And yet...
The convenience of the caregivers is clearly being codified and slipped in as #1 priority under the "quality of life" banner here. I see their argument to the contrary as pretty thin.
Posted by Dagonee (Member # 5818) on :
quote:If I'm not ready to take over care-giving for THIS child, what right have I got to tell this family that what they are deciding is wrong?
The same right - duty, actually - every human being has to comment on possible mistreatment of another.
I'm guessing it wouldn't be hard to come up with some action you consider too much for a family in this situation to do. And, if you're willing to do render such a judgment at all, then you clearly have the right to render the judgment here, whether or not you're willing to take over as caretaker.
If you castrate a boy in the same situation, you would reduce the risk of testicular cancer, avoid the discomfort of erections, and have reduced muscle mass (possibly - I'm not sure if the lack of exercise would make the testerone have an effect on muscle mass).
BTW, I meant to comment on this last night:
"[S]he [is] so severely brain damaged that none of that will matter to her" is a very different thing than "she is so severly brain damaged she is not aware of the differences." It clearly will matter to her. Her parents contend that it will be a net plus for her quality of life. If it didn't matter to her, they'd have no case at all for doing this.
Posted by mr_porteiro_head (Member # 4644) on :
quote:The same right - duty, actually - every human being has to comment on possible mistreatment of another.
I'm guessing it wouldn't be hard to come up with some action you consider too much for a family in this situation to do. And, if you're willing to do render such a judgment at all, then you clearly have the right to render the judgment here, whether or not you're willing to take over as caretaker.
I'm not sure I agree. When things are pretty much black-and-white, we all feel that we right and duty to speak up against atrocities.
But the more it becomes a grey area, the less inclined most of us feel to pass judgment.
Posted by Dagonee (Member # 5818) on :
quote:But the more it becomes a grey area, the less inclined most of us feel to pass judgment.
Of course, but that means that the black-and-white nature of the moral line is the distinguishing factor, not the fact that this family has to care for their daughter.
Lack of inclination isn't the same as lack of a right. I think, too often, people fail in their duty to condemn wrongdoing when they can sympathize with the wrongdoer. It's where I think any truth to "the road to hell is paved with good intentions" lies - not in the effect on the actor, but in the effect on those who observe the actor and decide not to evaluate the wrongdoing.
I suspect that lack of inclination stems more from the difficulty of making the decision than from any sense that one lacks the moral right to judge.
Posted by Dan_raven (Member # 3383) on :
Perhaps its just my strange view of the world but my biggest qualm with this is that what the doctors have created is a pedophiles greatest dream. Here is a perpetual child, never to grow up, grow old, gain wisdom, get pregnant, etc. She shall be the eternally niave, pre-pubescent looking, victim's victim.
Posted by Chanie (Member # 9544) on :
It really says something about our health care system that it is easier to do this than arrange for assistance for the caregivers.
Posted by Katarain (Member # 6659) on :
This treatment will simply change the type of person that is attracted to her... a pedophile instead of someone looking for easy sex with a severely disabled fully-grown woman. Whether she is full-grown or not, she will still never mentally grow up or gain wisdom--eternally naive. There are sick people in the world to cover every possibility, I think...
About this being for the caregiver's convenience... bear with me, because I haven't quite decided how I feel about this, but the thought that keeps on coming up is, why is it so bad that a part of the reason to do this might be the caregiver's convenience? They're giving up a lot of time to take care of her, when so many other parents would simply give her to an institution. (I'm not trying to put those parents down, either.) But they want to keep her at home and give her personal attention and time out, and if a smaller body makes that easier on them, AND at the same time has the other benefits that they've outlined for her... is that really so wrong? Since convenience was not their ultimate reason, and probably not even in the top 5, for doing this, is it so bad that it might be on the list somewhere? They already are "sacrificing" so much--I don't really like the use of that word, because I'm sure they wouldn't either--I'm just trying to point out that they COULD have sent her to an institution and been done with it.
Am I way off base?
Posted by Mucus (Member # 9735) on :
quote:I suspect that lack of inclination stems more from the difficulty of making the decision than from any sense that one lacks the moral right to judge.
I agree with the first part of this sentence, but I'm not sure that the second half follows.
Unless I'm reasonably sure that I'm right, do I still have a right to judge? I'm not sure that I do.
Posted by Eaquae Legit (Member # 3063) on :
Katarin, a person who would abuse her would abuse her anyway. These are very sick people, and they aren't very discriminating about who they abuse or what the victim might look, smell, or sound like, so long as the abuser can get away with it.
As to who has the moral right to judge, I think Dagonee is right. I have perhaps more perspective on the possible issues and solutions than the general population, but that doesn't give me any more right, it just makes me better informed.
Posted by Dagonee (Member # 5818) on :
quote:Unless I'm reasonably sure that I'm right, do I still have a right to judge? I'm not sure that I do.
I consider the conclusion "I don't have a reasonable basis to reach a conclusion" to be a form of judgment. I think it is reached too often, but it's certainly possible to reach it legitimately. So it seems we were operating off different definitions of judging. (Assuming you don't consider that conclusion to be judging, which I did because of your last post. If I'm wrong on that, I'm happy to be corrected.)
Posted by Lavalamp (Member # 4337) on :
quote:Originally posted by Chanie: It really says something about our health care system that it is easier to do this than arrange for assistance for the caregivers.
Is this really true?
I lived in a community where such children spend a full day in a classroom, 5 days a week. It may not come out of "health care" dollars, but there seems to be assistance available.
Now, it may be also that a lot of it is assistance that ends the day a child hits age 18. And it may also be that the assistance is means-tested, and limited by budgets, and so forth. I don't really know, but I wouldn't just assume that these parents had an easier time getting these treatments approved than they would have getting assistance.
Posted by sndrake (Member # 4941) on :
I don't have much time to post here right now. There's a lot going on and I'm having more to do than I should, since this really isn't an issue that NDY deals with for the most part.
But here's a couple things for people to chew on:
From my friend and colleague Marsha Katz, national ADAPT organizer and organizational consultant for the Univ. of Montana Rural Institute:
(about the pictures of Ashley on the parents' website and shared with permission)
quote:Look at the pictures on their website...Ashley is afforded no privacy, and is displayed like a possession or a pet while her parents and siblings have their eyes blacked out so as to obscure their identities. Where is the equity? How is this inclusion? Why is it okay to fully display Ashley while her family members remain a mystery? The answer is simple...all the differences in her treatment are because of her disability, and there is an implicit inference that because she is disabled she does not have to be treated with the same dignity, respect, equity and set of rules that are accorded to people without disabilities.
Here's a good article from the BBC:
[URL=http://news.bbc.co.uk/1/hi/health/6234601.stm ]Ashley - the disability perspective[/URL]
quote:Basic rights
For Andy Rickell from pan-disability charity, Scope, the issue is one of fundamental rights.
"To make such a choice for their daughter is an abuse of this young woman's human rights and has worrying implications for other disabled people," he said.
"We would expect any similar case in the UK to be taken to court and the rights of any disabled child protected."
I'll try to get back on comment later on slippery slopes. The short version is this: Don't mistake "slippery slopes" as natural phenomena. In recent times, anyway, it's not uncommon for advocacy groups to develop "incrementalist" approaches to what they want - these approaches are inherently "slippery slope" in nature. When successful, they are not an accidental occurrence.
Posted by Dead_Horse (Member # 3027) on :
I think "she won't know any different" doesn't make it right. She may get old, but now not just like everyone else. Her appearance is going to affect how other people treat her, and she will never appear "normal" whatever that is. Changing her size and appearance the way they have is not going to protect her from molestation. Maybe this will make it easier to care for her. But her family should include her and love her the way she is naturally, not only if she is small and cute. I don’t think it is all that difficult to assure someone’s comfort without removing the inconvenient parts. And I still like my breasts a lot even though they sometimes get uncomfortable.
I do think it is her parents' responsibility to make the choices they feel are right for her after much research and soul searching. I hope they still feel like they've done the right thing 40 years from now.
I don’t know, but assume Ashley is not currently able to express her own wishes or even if she has the capability of thinking about these issues. I don’t believe anyone can really know what is best for her. But for me, I would rather that a child of mine live as "normal" a life experience as possible. That means physically maturing normally. They control everything about her life…they need to feed her enough to keep her healthy, but not enough to let her get overweight. The time to consider a hysterectomy or removing breast tissue is when it becomes evident that normal function is distressing to her, not just in case. They can’t know that keeping her short will really improve her health or her life. There will be side-effects of the treatment they have given her that may end up worse than what they think. The high doses of estrogen intended for keeping her short might have increased the risk of breast and uterine cancer, thus making the surgeries necessary.
However, I know from experience that surgery causes trauma, nerve damage and pain no matter at what age it is done. And that molestation can happen no matter how a person looks. Family members can base their expressions of love on their approval of appearance. And the effects of these things can have repercussions long after they happen.
Posted by ketchupqueen (Member # 6877) on :
quote:I lived in a community where such children spend a full day in a classroom, 5 days a week. It may not come out of "health care" dollars, but there seems to be assistance available.
I have never seen a child with this level of disability in the classroom. I'm not saying that it doesn't happen-- but at some point the State of California (where I live) draws the line and considers a child "unable to learn", and medically exempt from schooling. At that point the school district does not even have to offer "quality of life" training as it does for extremely retarded children who are unable to benefit from a regular or adapted curriculum. As many Special Ed teachers I know will tell you, "We're not a babysitting service." Classrooms are divided by ability to learn and learn on different levels and at different speeds, some with special helpers-- but if they can't teach a child at least the basics of taking care of him/herself, they consider that he doesn't belong in school. Maybe it's different where you grew up, but that's what I've seen here, and what state law says, last I checked.
Posted by sndrake (Member # 4941) on :
This just went out from us, but it won't be up on our web page for many days or longer...
quote:For Immediate Release: January 6, 2007
Contacts: Diane Coleman or Stephen Drake 708-209-1500, exts. 11 & 29; 708-420-0539 (cell)
Not Dead Yet Statement on “Growth Attenuation” Experimentation
Not Dead Yet, a national disability rights group dealing with medical and bioethics issues involving euthanasia, reacted today to the public debate about the so-called “growth attenuation” invasive medical experimentation performed on a young girl in Washington State. These procedures rendered her sterile, prevented any sort of puberty and will keep the girl the size she is now for the rest of her life.
“We are saddened but not surprised by the fact that this was publicized and met with a great deal of public approval,” said Diane Coleman, founder of Not Dead Yet. “The public is willing to sanction the murders of disabled children by their parents, so it’s hardly surprising they would rush to the support of parents and their medical partners in a matter like this.”
Coleman points out that the series of surgeries and drug regimens would never have been given to a nondisabled female for any reason.
But more of these practices are threatened. When a report of the Washington case was published in the Archives of Pediatric and Adolescent Medicine, some so-called critics of the procedures said the only way we can “evaluate” the outcome is to do more “research,” which we presume to mean more experimentation on young women. “That’s unacceptable,” said Coleman. “We simply need to call a halt to it.”
Stephen Drake, research analyst for Not Dead Yet, is not surprised to hear there were medical professionals willing to perform such drastic measures on a young girl.
“As a child, I had many health problems that continued until the age of 12,” said Drake. “By the time I was 11 or 12 I was feeling good enough to worry about other things, like my height (Drake is 5’ 1”). I was tired of always being the shortest guy in my class and feeling bad about it. My parents took me to a specialist who determined that my health issues probably had depressed my growth and mentioned the possibility of growth hormone. My parents vetoed the idea, since I was finally happy and healthy. They figured I didn’t need any new unknown health risks introduced into my life. They were right and it didn’t really take me long to see it their way.”
Not Dead Yet calls for a total ban on this procedure and similar ones, no matter what ethics committees think of them. Ethics committees are not a substitute for the constitutionally-guaranteed right of due process. In fact, they often act as an end-run around those protections. “Ethics Committees often say they strive for diversity in their membership, but they have historically excluded representation from the disability community about whom they are making life and death decisions,” said Coleman.
The more I think about this procedure, the more I feel it is about on par with female genital mutilation.
Posted by AvidReader (Member # 6007) on :
quote: “Ethics Committees often say they strive for diversity in their membership, but they have historically excluded representation from the disability community about whom they are making life and death decisions,” said Coleman.
Wow.
I feel a little numb reading that. How can these committees be so condescending without everyone knowing what a farce they are? I've never seen this come up before.
That is so pathetic.
Posted by sndrake (Member # 4941) on :
Avidreader,
it isn't just disability ethics committes have problems with in terms of diversity. Locally, a muslim family came to us after having felt like they'd been railroaded through the bioethics committee "futility" procedure (termination of treatment for the woman's mother).
They were given just 48 hours notice of the meeting. When they asked if an Islamic scholar was on the committee, they were told "no." When they asked for a postponement so they could find one to accompany them to the meeting, they were refused again.
It's a long story and doesn't have a happy ending, except maybe for the hospital and ethics committee.
In the meantime, I also wanted to alert folks to a couple of new links:
"Benevolence" and "good intentions" have often had disastrous consequences for the disability community. Throughout history, "for their own good" has motivated and justified discrimination against us. The recent story about nine-year old Ashley, a child with severe disabilities, exemplifies this problem.
(closing)
In our view, Ashley has been denied her basic human rights through draconian interventions to her person.
Today, Time Magazine published The Pillow Angel, part 2, which mostly consists of disability rights concerns about the issue:
quote:Those troubled by the Ashley treatment as a medical fix for a larger social problem are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors be allowed to kill the sickest infants — which is already legal in the Netherlands. "A very disabled child can mean a disabled family," the college wrote to the Nuffield Council on Bioethics, and urged that they "think more radically about non-resuscitation, withdrawal of treatment decisions...and active euthanasia, as they are ways of widening the management options available to the sickest of newborns." At least in Ashley's case, however much the doctors debated the proper "management options," they all agreed that her life had a value worth fighting to preserve. But as a standard, that's a pretty low bar to set.
[ January 09, 2007, 03:45 PM: Message edited by: sndrake ]
Posted by Katarain (Member # 6659) on :
Killing disabled or sick babies reminds me of The Giver. Who knew people, doctors no less, would someday be advocating exactly that approach.
Posted by romanylass (Member # 6306) on :
There's just no way my mind can accept the idea that killig the sickest infants is ethical.
Posted by sndrake (Member # 4941) on :
Katarain and Romanylass,
It's really not that surprising a thing to hear from at least some doctors. At any given time, there's always a segment of the medical population who believes in practices like these and their numbers fluctuate within the profession over time. This is a period in which they are gaining in both influence and numbers, I think.
You should check out this old thread on Hitler's debt to America.
Posted by dkw (Member # 3264) on :
Oh no -- it's not killing it's just "widening the management options."
I think the weasel-wording is almost more harmful than the actual suggestion.
Posted by Belle (Member # 2314) on :
I'm with you, dkw. That's very distressing.
Posted by Fyfe (Member # 937) on :
The precedent shouldn't, I think, enter into any consideration of whether to condemn the parents or not. Ashley's parents are not responsible for any precedent that might get set; this is their kid and they're trying to do the best they can for her, and they are not responsible for any crazy people that might use them as a way to justify the crazy and wicked things they might do in the future with their disabled children.
My family has an Ashley (my aunt Claire), who is about the same size as Ashley is now, and we could not care for her at home if she were bigger. The fact that she remained small and did not hit puberty is the reason my grandparents have continued to be able to care for her in the home from her birth to her present age (mid-forties). In cases like these, the family's convenience IS the child's best interest. When my grandparents die Claire will come to my parents, and they are going to have to put her in a home because they cannot care for her as she deserves to be cared for (my grandparents can't either at this point but won't admit it). If there was a surgery that would make the difference between putting her in a facility and keeping her at home, we'd do it in a heartbeat. Her parents want to care for her themselves; they don't want to entrust her to a facility or to an assistant (who, and I'm sorry to make this generalization but it's true, tend to be underpaid and not particularly devoted or reliable).
And I must be misunderstanding arguments about violating her autonomy. What is meant by autonomy here?
Posted by Dagonee (Member # 5818) on :
In my first post on this thread, I said:
quote:I might - might - be able to be persuaded that the wrongs caused by not stunting growth and removing body parts make the wrongs caused by doing so the morally better choice.
I stand by this assessment, and make no judgment with respect to whether these parents were motivated absolutely and 100% by their concern for their daughter.
However, I have solidified my original impression that such procedures should be prohibited absent either 1) informed consent of the patient (not possible here nor likely in any situation involving a minor, but included for completeness) or 2) a condition that would make this a reasonable course of treatment that a fully competent person might consent to.*
Even if there are situations where this treatment would be ethically/morally correct without patient consent, I flat out don't trust the legal and medical decision-making processes - indeed, any human process - to distinguish well enough between moral situations and immoral situations.
There are too many possible bad motives here. If the parents' claims about the ease of care are true, then it creates a profit motive for someone to push such surgery (read the Post series on group homes in DC if you doubt there are people who would do so). Well-intentioned caregivers still have too much personal interest at stake.
It's not a slippery slope argument for me so much as a type I/type II error argument. Assume that there are moral and immoral applications of such therapy. Further assume that a decision-making result that denies permission to a moral application is a type I error, and a decision-making result that grants permission to an immoral application is a type II error. The harm inherent in one type II error is of such magnitude that type I errors cannot outweigh it.
*2 is ill-defined as of yet. My main inclination is that the medical decision should be the same one made as if the person weren't disabled, but of course that's not a usable criteria here since aspects of the disability might be what is being treated (not in this case, of course). So I'm going to choose the lawyer-word reasonable for now with the intent that it be interpreted as close to the aspirational test mentioned above as possible.
Posted by ketchupqueen (Member # 6877) on :
quote:Originally posted by romanylass: There's just no way my mind can accept the idea that killing the sickest infants is ethical.
Mine, either. I understand that in some cases, the parents will have to make the very difficult decision to either refuse treatment for a child who WILL NOT live more than a few years on life support, not more than a few days without it, or to try life support but eventually take the baby off, but that is not the same thing as a) the doctors making the decision alone or b) killing the baby outright.
I was shocked when I learned that "refusing treatment" meant they wouldn't even suction out the baby's lungs, though. I don't know that I could, as a parent, watch a baby, even one whom I knew had no chance to live, suffocate slowly from stuff in his lungs. Isn't there a middle ground?
(I say that as mother of a child who required aggressive suctioning and oxygen when she was born before she was able to breathe normally. They were working hard to stop my hemmorhaging, but I remember being more concerned by the gunk in the baby's lungs and the neonatologist working over her increasingly frantically, even when they brought the crash cart in "just in case" because my bp was dropping so fast.)
Posted by Destineer (Member # 821) on :
sndrake's bugbear, the "bioethics establishment," would seem to agree with him about this case. At least, so says the director of Penn's Center for Bioethics (also editor of the field's pre-eminent journal).
Posted by Dagonee (Member # 5818) on :
Destineer, part of the "bioethics establishment" approved these treatments.
Posted by sndrake (Member # 4941) on :
Destineer,
Please notice that Caplan's comments are so close to those of disability rights advocates they border on plagiarism, since he presents them as his own ideas (instead of saying that disability advocates have been fighting for a long time for better community services). This isn't ignorance on Caplan's part. It's just his way of jockeying for power in this case - successfully, except for Time Magazine.
Posted by Destineer (Member # 821) on :
That's a pretty inclusive definition of plagiarism. Must one always cite everyone one agrees with?
Maybe he just doesn't want to associate his opinion with groups he doesn't usually agree with, and probably considers to be on the fringe.
quote:Destineer, part of the "bioethics establishment" approved these treatments.
Yeah, and part of the establishment you're part of has done some pretty unprincipled stuff in the past. Fortunately, most lawyers aren't like that. Likewise, most bioethicists probably wouldn't advocate such a radical course of treatment.
I'm tired of seeing bioethicists-as-a-whole trashed on this board on the basis of a few (or even several dozen) outlying cases. Most bioethicists are thoughtful, humane, well-informed people who are wrestling with issues far more nuanced than most people are willing to acknowledge.
And they're positively saintly compared with the nearest alternative -- the sort of blatantly ideological, scientifically uninformed politicking that goes on in the "President's Council for Bioethics."
Posted by sndrake (Member # 4941) on :
quote: I'm tired of seeing bioethicists-as-a-whole trashed on this board on the basis of a few (or even several dozen) outlying cases. Most bioethicists are thoughtful, humane, well-informed people who are wrestling with issues far more nuanced than most people are willing to acknowledge.
And they're positively saintly compared with the nearest alternative -- the sort of blatantly ideological, scientifically uninformed politicking that goes on in the "President's Council for Bioethics."
Des, as far as I know I'm the main perpetrator of bioethics bashing and please don't get to outraged on their behalf - they've done plenty of bashing back.
Mostly, though, they seek to keep bioethics a domain in which public policy is hammered out by an elite group of professionals. It's a value shared by both Peter Singer and GW's Council members.
It's kind of like Urban Planners trying to claim that they should be the only ones having a voice in policy.
I don't play favorites in bioethics - I think as a field they work against the public having a voice, including my part of the public.
quote:Yeah, and part of the establishment you're part of has done some pretty unprincipled stuff in the past. Fortunately, most lawyers aren't like that.
Yeah, which means if someone said "the legal profession is against the misalignment of incentives involved in class actions and derivative suits" I'd correct you by saying "part of the legal profession profits greatly from that misalignment."
You were the one that made the sweeping statement, not me.
quote: Likewise, most bioethicists probably wouldn't advocate such a radical course of treatment.
I'd love to see some proof of this.
Posted by sndrake (Member # 4941) on :
FWIW, there was a call out today to email and/or fax a number of parties associated with the "Ashley Treatment" - the doctors will be obvious as recipients, but the two others include their public relations person and Melinda Gates, who is in charge of fundraising for the hospital.
Anyway, here's the letter I faxed and emailed to all parties:
quote: January 9, 2007
To: Dr. Douglas Diekema
CC : Dr. Daniel F. Gunther Melinda Gates Susan Macek
From: Stephen Drake Research Analyst
I am writing to you wearing several hats.
My first hat is as a person with a disability related to injuries received at
birth. The doctor who inflicted those injuries told my parents I probably wouldn’t live very long and that it would be better for all concerned if I died. Obviously, my parents didn’t take the road being offered and I’m here 51 years later.
My second hat is that of a person who spent over ten years working in schools, group homes and day treatment centers supporting people with just about every conceivable combination of physical and cognitive disabilities you could imagine. Some of them had lousy lives and some had very good ones. The quality of their lives was unrelated to the severity of their disabilities. It always came down to the level of support, love and acceptance they experienced from those around them.
My third hat is as a disability activist who has been dealing with the increasingly hostile policies emerging in medicine and bioethics over the past decade. Mostly I deal with issues such as infanticide, euthanasia and assisted suicide.
But your actions and the sanctions given by your so-called ethics committee represent one of the most openly egregious attacks on the bodily rights of people with disabilities I have seen in my work as an activist. Where were your social workers? Are there no families with severely disabled adults finding the support they need? Did you bother to find out?
Rather, I suspect this was an all-too-appealing chance to do a “cutting-edge” procedure involving “cutting up” a little girl. It brings us back to the times of the infamous Willowbrook Institution, where children were injected with hepatitis in the efforts to develop a vaccine, with the coerced consent of parents.
As an activist, advocate and person with a disability, I promise to do all in my power to have your assaults on disabled children halted and to call for investigations into what passes for “ethics” in your ethics committees.
Very Sincerely,
Stephen Drake Research Analyst Not Dead Yet 7521 Madison St. Forest Park, IL 60130 708-209-1500 http://www.notdeadyet.org
Posted by ClaudiaTherese (Member # 923) on :
sndrake, I'm cautious about asking this, but it's something I really do need to know:
What level of involvement are you comfortable with me (a physician and someone academically trained in bioethics -- of note, though, often in general and vocal disagreement with many highly-publicized bioethics commentaries) taking in these threads? I'm honestly not asking from a position of defensiveness or frustration, just really wanting the information that only you can give me about this.
I find these matters to be important and worth discussing, but I'm never quite sure if my input is ... helpful? egregious? irrelevant? relevant but somewhat insulting? I can work with any of these, by the way, but I'm feeling kind of adrift at figuring out what sort of involvement is and is not appropriate for me in this area at this site.
(Given that I'm batting about 150 lately on the Courteousness scale, it seemed better to ask outright. But my apologies in advance if this is too delicate a topic to ask about so baldly, or if I should have asked in a separate thread, or perhaps in private email. This just seemed a good place to do it clearly.)
Posted by Lyrhawn (Member # 7039) on :
I'd guess this is a no brainer, but I'm curious:
People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I know talking about abortion in general is a much more inflammatory subject, but I'm wondering if anyone supports one but not the other.
My view on the ethics of the situation is as such: Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
Posted by Dagonee (Member # 5818) on :
quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm not against the testing per se, but I am against the termination of the pregnancy.
Posted by ketchupqueen (Member # 6877) on :
quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm pretty much against this, mainly because of the unproven surgeries that were done and her inability to consent.
So that's where I stand on this; on to amnio and abortion.
I'm in favor of amniocentesis when indicated (although 4-D ultrasound now provides a viable and non-invasive "first step" evaluation for mothers with an abnormal AFP screen, and I think it should be offered first in that situation whenever possible.) I think in all cases it is best for parents to be as knowledgeable as possible about what is going on with their baby. I personally would not make the choice to abort a baby with an abnormal genotype or abnormal development in utero. In general, I am against abortion. However, I also would not take that choice away from other parents, even though it is not a choice I would make, because their beliefs about what is right and what they can handle in their own lives may be different from mine, and I think it would cause more pain and damage to disallow them abortions than to continue to allow that to be the parents' choice.
Posted by Dagonee (Member # 5818) on :
quote:Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
Hit reply too soon. I don't thing the first sentence is correct. Even if it is correct based on the parents' available resources, it's not correct based on an achievable plan for providing adequate care to those with such disabilities.
The idea that a surgery such as this can become ethical simply because we fail to provide adequate care strikes me as very wrong.
And this is without investigating whether the parents really could care for her if she were to continue growing. I'm not going to delve into it deeply, because I tend to think they have good motives in general, but if they could continue to provide care for her by making particular sacrifices, we'd have to weigh the harm of those sacrifices against the harm of the surgeries. To perform this calculation fully would require in-depth analysis of each family's financial status in deciding whether this treatment is ethical. And I'm quite frankly not willing to allow financial status to enter into the equation of whether this girl can ethically have pieces of her cut out without her consent.
Imagine a situation where the ethic board decides that the family can afford to care for the adult-sized patient unless the parents have one more child. I think it's an untenable paradigm.
Posted by Belle (Member # 2314) on :
quote:I'm not against the testing per se, but I am against the termination of the pregnancy.
That's my feeling as well. In all my pregnancies, I refused amniocentesis (not that it was ever indicated, but my doctor asked me up front if I would be interested in having it done) The reason I refused is because there was a slight risk of miscarriage from the procedure itself, and since there was no possibility of me terminating the pregnancy anyway, I saw no reason to take the risk.
Posted by sndrake (Member # 4941) on :
quote: I'd guess this is a no brainer, but I'm curious:
People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I know talking about abortion in general is a much more inflammatory subject, but I'm wondering if anyone supports one but not the other.
I've been watching blogs and news accounts and I don't see any real trend here. Art Caplan, who has been mentioned on this thread, has no problem with prenatal screening (with the possible exception of the looming possibility of an autism prescreening test), but is against what happened here.
The Christian Medical Dental Association, a group of pro-life doctors, had a spokesperson come out and state their approval of this.
Then you've got folks like James Hughes, who has a passion for transhumanism (anyone watching him on Paula Zahn or another show might have thought he had some expertise or interest in disabilities). I know from postings of his on an email list he really would be just as approving of the family killing Ashley as having her subjected to this regime of surgery.
So while I'm not sure what you're looking for, I sure don't see anything.
Posted by sndrake (Member # 4941) on :
CT,
I don't think I've expressed discomfort about your participating in any threads related to NDY stuff, bioethics, etc.
I know discussions are hard, because you come at it from a completely different perspective than I do. I see the field as increasing politicized and one that seeks to dominate policy. It's not that I think all ethics committees are doing horrible things, but there are few meaningful checks on them and no recourse for those who have been railroaded by them.
I can't write too much more. I've already broken one of my main rules about writing about work stuff at night and risking insomnia. I won't be real conversant until at least Friday - there'll be more stuff happening that is going to keep my very busy for at least the next two days.
FWIW, by feelings about medicine, bioethics, ethics committees, etc. arent all that unusual among disability advocates. My happy role in the mult-pronged advocacy approach is to be the one who uses the strongest language and takes some risks that larger organizations find more difficult.
Now... It's Tuesday and that means a certain show has started up again.
Time to go watch my favorite manipulative, drug-abusing sociopath. Posted by Eaquae Legit (Member # 3063) on :
I'd just like to step up once again and say that not all care homes and communities are bad. Some are wonderful, kind, caring places where the community members are given chances to grow into adults in their own right, not simply as their parents' children.
There are some not-so-great places, I know first hand. The place I'm at now faces a constant struggle against burocracy which affects the residents. Some days I get depressed there, until I remember that every single resident has long surpassed their life expectancy because they get the care and medical attention they need.
Things aren't perfect. But they're a darn sight better than they used to be, and they're getting better. So can we please stop talking about "putting people in homes" as if it's tantamount to a life sentence complete with torture?
Posted by Lyrhawn (Member # 7039) on :
quote:Originally posted by Dagonee:
quote:Not doing the surgery almost certainly means putting the kid in a home or secondary care serivce of some sort. Would the quality of life of the child be increased or decreased by being put there? If the answer is decrease, then clearly it's for the good of the child to stay at home. Do the benefits of staying at home outweigh the negatives of the surgery?
Hit reply too soon. I don't thing the first sentence is correct. Even if it is correct based on the parents' available resources, it's not correct based on an achievable plan for providing adequate care to those with such disabilities.
The idea that a surgery such as this can become ethical simply because we fail to provide adequate care strikes me as very wrong.
And this is without investigating whether the parents really could care for her if she were to continue growing. I'm not going to delve into it deeply, because I tend to think they have good motives in general, but if they could continue to provide care for her by making particular sacrifices, we'd have to weigh the harm of those sacrifices against the harm of the surgeries. To perform this calculation fully would require in-depth analysis of each family's financial status in deciding whether this treatment is ethical. And I'm quite frankly not willing to allow financial status to enter into the equation of whether this girl can ethically have pieces of her cut out without her consent.
Imagine a situation where the ethic board decides that the family can afford to care for the adult-sized patient unless the parents have one more child. I think it's an untenable paradigm.
I guess I misunderstood the original article then, but didn't the parents cite inability to care for the child in the future as one of their main reasons for the surgery? I was under the impression the reason they were doing this was a combination of making the child more comfortable, and making it easier to care for her so they wouldn't have to send her to a home.
I also thought it was more or less established that she has limited brain function and consent wasn't just impossible to obtain, but she wouldn't even know how to give consent, or what it would entail. How is it any different a family member making medical decisions on behalf of someone else in certain situations?
Correct me if I have any of the facts wrong up there. I'm going by memory.
Posted by Dagonee (Member # 5818) on :
quote:I guess I misunderstood the original article then, but didn't the parents cite inability to care for the child in the future as one of their main reasons for the surgery? I was under the impression the reason they were doing this was a combination of making the child more comfortable, and making it easier to care for her so they wouldn't have to send her to a home.
The parents cited this inability. It doesn't mean that inability actually existed. And any inability that did exist was due to inadequate support from society at large.
quote:I also thought it was more or less established that she has limited brain function and consent wasn't just impossible to obtain, but she wouldn't even know how to give consent, or what it would entail. How is it any different a family member making medical decisions on behalf of someone else in certain situations?
Because there are some types of "treatment" that no one should be able to consent to for another. I number removing organs* and artificially stunting growth to be among those types of treatments.
*See correction in later post.
[ January 09, 2007, 10:05 PM: Message edited by: Dagonee ]
Posted by Eaquae Legit (Member # 3063) on :
quote:And any inability that did exist was due to inadequate support from society at large.
That is very, very true and I would love to get my hands on the person who failed to properly inform them of the available resources.
And to boot the parents in the bum about their "inability" to find a respite care worker.
Posted by Lyrhawn (Member # 7039) on :
What do you think society at large owes them?
What constitutes "removing organs" with respect to decisions a family member can make? Are you talking about family members allowing doctors to harvest the organs of comatose patients?
Posted by Dagonee (Member # 5818) on :
quote:What do you think society at large owes them?
Society owes support to those who cannot support themselves. We provide that support in a variety of ways: by requiring parents to care for their children, by helping children without parents find parents, by providing care directly, by making it easier or more appealing for people to donate time or money, by removing barriers to good care. In the case of children who require extraordinary care, I believe society cannot demand that the parents shoulder the entire burden.
Sadly, we do this badly or not at all in many cases.
quote:What constitutes "removing organs" with respect to decisions a family member can make?
Appendicitis leads to an organ removal decision the proper person can make on behalf of a mentally incompetent person.
quote:Are you talking about family members allowing doctors to harvest the organs of comatose patients?
Organ donation (legally) happens from brain-dead (total cessation of brain function, including the brain stem - not a Terri Schiavo situation) or cardiac-dead patients (when brain death cannot be determined - total cessation of breathing and heartbeat when life support withdrawn), not merely comatose. I have no problem with a proper designee approving organ donation in such circumstances.
Organ donation from a living donor is one of the situations I would limit to personal consent only, not designated consent.
Posted by Lyrhawn (Member # 7039) on :
The situations you list there are the only ones that came to mind in the first place.
In what other situations are family members giving away the organs of those unable to give consent?
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by sndrake: I don't think I've expressed discomfort about your participating in any threads related to NDY stuff, bioethics, etc.
*nods
You haven't said anything about this. I do have my own level of discomfort, and I'm not sure how best to manage it. I think it would help if we can talk about this specifically later when you have the time -- I'd really appreciate it.
Hope you're enjoying the homely sociopath. *grin
Posted by Dagonee (Member # 5818) on :
quote:In what other situations are family members giving away the organs of those unable to give consent?
Hopefully none. I'm not sure what you're getting at here.
In this case, a uterus and two breast buds were removed and not donated. They were discarded.
Posted by Dagonee (Member # 5818) on :
BTW, I left out a phrase in a sentence above. I'll correct here:
quote:there are some types of "treatment" that no one should be able to consent to for another. I number removing organs [in situations where the organ removal would not be a treatment recommended for a non-disabled person] and artificially stunting growth to be among those types of treatments.
Posted by ClaudiaTherese (Member # 923) on :
sndrake, when you are back online and discussing this stuff again here, it would be great if you could be specific for me about what level of involvement you are comfortable with me taking in these threads. You haven't expressed discomfort, but I can't tell if it's there (unexpressed), and knowing for sure is important to me.
Thanks in advance. It'll wait until you have time and inclination. Posted by Mucus (Member # 9735) on :
quote:Originally posted by Dagonee:
quote:People supportive of this surgery, are you in favor of doing an amniosintesis to check the baby's karyotype for abnormalities such as Down's Syndrome, and possibly terminating the pregnancy of a disabled child?
Same question to people against the surgery, are you against such practices?
I'm not against the testing per se, but I am against the termination of the pregnancy.
Been abstaining from this thread due to ambivalence. I am reminded of a good post, in an exchange between, well Dag and Irami, and would like to clarify one issue.
I am morally for amniosintesis . I am morally ambivalent about terminating the prgnancy, but leaning against. I am morally ambivalent about the surgery, but leaning towards.
However, I do not believe that my morals should translate into laws, which is what seems to be required to stop these parents, which seem to have a well laid out and well intentioned plan...even if you disagree with their actual decisions. They seem to be pretty sure about this decision.
In the end, I believe that in an ideal world, many of the posters here are correct. She should grow up free of surgery, be well cared of by her parents, and be well supported by professionals.
However, the reality is that the medical system is not ideal. We can stand here and armchair quarterback, but those parents (and that child) will have to deal with the consequences. We can say that help will show up, but will not bear the consequences if it does not.
In fact, while I support the cause (getting more support for the disabled at home) I also recognise that it is highly improbable to succeed. Along the same lines, I support Kyoto but recognise that for the moment it is more financially prudent to buy a normal car (and assume that the government will not significantly raise taxes to reduce consumption) than a hybrid and hope that it will pay off in the future.
Along the same lines, I would hope that the parents would be given support if they did not make this decision but think that realistically they would not be given enough. Under these circumstances, I cannot jump to attacking them or supporting them, but cannot agree with anyone stridently attacking them.
I myself find it hard to decide what I would do, even as the child. Given a situation where I could not read, play music, be social, where much of the joy in life would be spending my time with my parents, I would find the choice between an institution and the care of my parents to be hard to make. Even if the institution was the best, in the end the workers there are motivated out of altruism and a paycheque, my parents would be motivated for me, specifically. I do not think that the choice is clear.
For the group that sndrake represents, (which I assume are disabled people and possibly their caregivers) I cannot help but think that they are too emotionally tied to the situation. They are sure that with their level of disability, they fear the loss that they would experience if they had that surgery. I would note that if any of them were truly in that girl's position, they would not be able to make a protest in that manner ... in a funny way, they have fallen into a trap that many doctors have to avoid, being too sympathetic with the patient.
Posted by Dagonee (Member # 5818) on :
quote:However, I do not believe that my morals should translate into laws, which is what seems to be required to stop these parents, which seem to have a well laid out and well intentioned plan...even if you disagree with their actual decisions. They seem to be pretty sure about this decision.
The area where one human being is doing something to another without that person's consent is precisely the area where morality has the strongest claim to be translated into law. In my mind, this is especially true when the actor seems pretty sure about the decision.
I'm not saying every moral tenet involving actions toward another should be translated to law. Far from it. But organ removal? Deliberate stunting of growth? They are comfortably on the side of the line that should be regulated by law.
That doesn't necessarily mean that this procedure should be banned (I think it does, for additional reasons I've discussed in fair detail). But I think most people would agree there's some limit that should be imposed by law. Some examples:
1) Castrating pre-teen severely mentally disabled children. Reduces strength and potential damage such a person could cause and allows easier control, which can reduce risk of injury to the child. 2) Amputation of legs after paralysis for mentally disabled patients. After all, the legs are now useless and only add unnecessary weight.
I think it's pretty clear that we all would impose some limits on medical/surgical alterations of mentally disabled individuals, even if we believe the parents to be well-intentioned.
Posted by Mucus (Member # 9735) on :
Dag: Sorry, I should have specifically noted, my morals *in this case.*
Obviously some laws have to be based on morals, with the obvious example being murder, another good example where an actor is (sometimes) sure about the decision.
I just do not think that my morals are clear enough in this case, and I would hate the legislate them (in the form of a ban) on someone else. More importantly, I do not believe anyone would have the moral authority to tell me what to do in a similar case.
Posted by Destineer (Member # 821) on :
quote:The area where one human being is doing something to another without that person's consent is precisely the area where morality has the strongest claim to be translated into law.
But another issue arises in cases like this one. Is a creature that's permanently incapable of consenting to anything (not just incapable of communicating consent, but incapable of willing or making decisions) properly called a human being? Is such a creature a person?
One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
Claims like "Ashley is mentally 3 months old" seem a bit distorted to me. One of the features of a normal 3-month-old mind is that it is growing, developing into something more sophisticated and aware. It sounds as if Ashley's mind is not like this at all.
Is she as mentally sophisticated as a cat? I would bet money that her mind is not as sophisticated as a gorilla's. These things are difficult to test, which means Stephen and his colleagues have a good point when they urge us to be cautious. And yet, these comparisons raise quesions. If Ashley is less like you or me, mentally, than a gorilla is, why does her consent matter morally when we usually assume that a gorilla's consent doesn't matter?
I'm not advocating that we follow this train of thought all the way, or even as far as I've taken it here, in decisions about medical ethics. I just want people to understand that there are significant, ill-understood questions about what makes a person. My problem is with people who pretend such questions are easy or obvious.
Posted by pooka (Member # 5003) on :
Well, she started pre-pubescence at 6 1/2. That would justify to me the hysterectomy and breast-bud removal, since there was adequate reason to suspect her hormones were abnormal. And at that point, the growth attenuation seemed like a reasonable standard for her care, and I think that is where the communication breakdown is taking place. They do not see themselves as making therapy decision, but as continuing a therapy course.
I happen to think they are misguided because as they age, even her current size will not allow the level of care they are talking about. 75 lbs is quite a bit. And in the end, I think it comes down to their convenience and their ability to feel independent from in-home care, so on the whole I'd give further grown attenuation a thumbs-down.
Posted by Fyfe (Member # 937) on :
I think her current size will allow for the level of care they are talking about for a good long while. My aunt Claire is about that weight, and my grandparents have been caring for her for 45 years at home. (The system's breaking down now, but that's because they're getting old and frail and refuse to allow their other children to help them.)
Posted by Dagonee (Member # 5818) on :
quote:But another issue arises in cases like this one. Is a creature that's permanently incapable of consenting to anything (not just incapable of communicating consent, but incapable of willing or making decisions) properly called a human being? Is such a creature a person?
Yes. Absolutely.
quote:One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
Only if one thinks it is proper to rate the "worthiness" of a particular homo sapiens to be called a person. It is precisely this activity which I find to be morally repugnant.
quote:If Ashley is less like you or me, mentally, than a gorilla is, why does her consent matter morally when we usually assume that a gorilla's consent doesn't matter?
Because a human being is different than an animal.
quote:I just want people to understand that there are significant, ill-understood questions about what makes a person. My problem is with people who pretend such questions are easy or obvious.
There might be ill-understood questions about what makes a person - see tetratomas for one difficult question.
There is not an ill-understood question about what makes Ashley a person, though. My problem is with people who try to decide what about a person makes that person worthy of moral treatment.
(And this is not to say that every person who favors this surgery thinks that Ashley is not worthy of moral treatment. I understand that some people think that the surgery is a moral way to treat a person. This post - except for this parenthetical - is not directed at such people.)
Posted by dkw (Member # 3264) on :
quote:One of the weighty issues which arise in bioethics, and which disability activists often (in my experience from reading their literature) refuse to recognize, is that the line between a person and a non-person animal can be blurry in some cases.
I don't think they "refuse to recognize" it. They disagree with it. Strongly. In fact, that would be the point of much of said activism.
Posted by Destineer (Member # 821) on :
quote:Only if one thinks it is proper to rate the "worthiness" of a particular homo sapiens to be called a person. It is precisely this activity which I find to be morally repugnant.
Even if that Homo sapiens has no higher brain activity? A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
One must draw the line somewhere. Do you draw it when the heart stops beating, and only then?
And on your view, could a non-Homo sapiens (eg, a sentient alien) ever be a person? How could we tell, if there are no mental criteria for being a person?
quote:There is not an ill-understood question about what makes Ashley a person, though.
I say there is. There must be some mental criteria for being a person, or else brain-dead humans would still be people. The question then arises, does Ashley meet these criteria? And that is a tough question because, as I've pointed out, by at least some measures Ashley mentally resembles a lower animal more than she does an archetypal human.
quote:I don't think they "refuse to recognize" it. They disagree with it. Strongly.
But I haven't seen a convincing, non-fallacious argument for their view (in particular, they seem to often commit the slippery-slope fallacy).
Posted by Dagonee (Member # 5818) on :
quote:Even if that Homo sapiens has no higher brain activity? A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
A brain-dead person has no brain activity, not just no higher brain activity.
quote:And on your view, could a non-Homo sapiens (eg, a sentient alien) ever be a person? How could we tell, if there are no mental criteria for being a person?
Assuming you mean a sapient alien, then one would look to the species. Is the species sapient as a whole? If so, then non-sapient members of that species are persons.
quote:I say there is. There must be some mental criteria for being a person, or else brain-dead humans would still be people.
Brain dead people are dead people. You either mean something other than brain dead or are simply mistaken in your assertion.
quote:The question then arises, does Ashley meet these criteria? And that is a tough question because, as I've pointed out, by at least some measures Ashley mentally resembles a lower animal more than she does an archetypal human.
And I say your standards are wrong, arising most likely from your error concerning brain death. Personhood is not tied to mental status.
Posted by dkw (Member # 3264) on :
quote:A brain-dead individual is still a live, respirating animal of genus Homo, species sapiens.
A completely brain-dead individual would not be respirating. Not without mechanical assistance, anyway. That's a frequently used pro-euthanasia misstatement, to call someone in a coma "brain-dead" when they are not.
And brain-dead humans are still people. But they're dead people.
Posted by Destineer (Member # 821) on :
quote:My problem is with people who try to decide what about a person makes that person worthy of moral treatment.
Why do you have a problem with such people? There must be some reason why people are worthy of moral treatment, since they are worthy of it. Every fact has some explanation. Why shouldn't we try to figure out the reason?
You don't want to know what makes people worthy of moral treatment? I sure do!
Posted by Dagonee (Member # 5818) on :
People are worthy of moral treatment not because of an attribute they possess but because of what they are: people.
Posted by Destineer (Member # 821) on :
quote:A completely brain-dead individual would not be respirating. Not without mechanical assistance, anyway. That's a frequently used pro-euthanasia misstatement, to call someone in a coma "brain-dead" when they are not.
What a lot of people on both sides don't realize is that whether you need life-support or not is beside the point. Disconnecting a living person from life support is wrong. Disconnecting something that's not a living person is OK.
quote:And brain-dead humans are still people. But they're dead people.
You can use the words that way, if you like. Since dead people don't deserve the same moral consideration as living people, you're not really disagreeing with me here.
Posted by sndrake (Member # 4941) on :
Give Des a break, Dag. He's probably having trouble reading his notes on Singer's views on "personhood."
Back to the real world and real work.
Posted by Dagonee (Member # 5818) on :
And Ashley's not dead, so I'm not agreeing with you. Ashley has brain activity. A brain dead body does not. Besides, you've yet to correct or clarify your usage of brain dead.
The word is right there - dead.
Posted by Destineer (Member # 821) on :
quote:Brain dead people are dead people. You either mean something other than brain dead or are simply mistaken in your assertion.
Dag, dkw, substitute "living person" for every time I use the word "person" in this thread and let's get on with the non-pointless-semantics part of the debate.
quote:People are worthy of moral treatment not because of an attribute they possess but because of what they are: people.
And there's now way to define what it is to be a LIVING person, in terms of a thing's attributes? Something with all the same attributes as a rock could be a person?
quote:Assuming you mean a sapient alien, then one would look to the species. Is the species sapient as a whole? If so, then non-sapient members of that species are persons.
How many members of a species have to be sapient in order for the species to be sapient? Most of them? Only one?
If I took Ashley out of our world, and put her in a world where all human beings were like her mentally, would she still be a person? Seems like your view would say no, she wouldn't.
What if I took her out of our world, and put her in a world where there were no other humans? Seems like your view would again say that this other-worldly Ashley, who is the exact same creature except that she's not surrounded by a bunch of other sapient humans, was not a person.
That's pretty strange. Seems like whether a thing is a person should have everything to do with that thing itself, and nothing to do with whatever other things happen to exist around it.
Posted by Destineer (Member # 821) on :
Re Singer: Insofar as I've read Singer's work, ie only one of his many books, I don't agree with it. It's impossible to agree with Singer unless one is an act-utilitarian, which I most certainly am not.
Posted by Dagonee (Member # 5818) on :
quote:Dag, dkw, substitute "living person" for every time I use the word "person" in this thread and let's get on with the non-pointless-semantics part of the debate.
Your entire chain of logic depends on a faulty starting premise, and until you clarify or correct it, there's nothing to debate.
You've essentially stated that a person must be alive in order to be worthy of moral treatment. Ashley is alive. Therefore she's worthy of moral treatment.
You selected an attribute that can indicate life. You could have selected a different one. The point is that Ashley isn't anywhere near the boundaries of the attribute of "life."
It appears you selected this attribute based on a misunderstanding of what "brain-dead" means. Regardless, the attribute you picked is relevant to the status of living or dead, not to the status of person or not. The same attribute (not brain dead) exists for a cat and a host of other organisms.
This is where your chain of reasoning falters: "There must be some mental criteria for being a person, or else brain-dead humans would still be people."
Your "or else" is flat out wrong.
quote:If I took Ashley out of our world, and put her in a world where all human beings were like her mentally, would she still be a person? Seems like your view would say no, she wouldn't.
No, my view doesn't say that at all. She's a living person. You moving her somewhere else without people around doesn't change that, except for the fact that she would soon be dead.
quote:That's pretty strange. Seems like whether a thing is a person should have everything to do with that thing itself
Exactly. And nothing to do with your evaluation of her mental capabilities.
Posted by sndrake (Member # 4941) on :
Promised Update - not much time for anything else right now:
quote:For Immediate Release: January 10, 2007
For Information Contact: Sharon Lamp - (847) 894-4907 Stephen Drake - (708) 209-1500; (708) 420-0539 Amber Smock - Ambity@aol.com
Feminist Response in Disability Activism (FRIDA) To Lead “Ashley Treatment Action” at the American Medical Association Headquarters
At 1 p.m. on Thursday, January 11, Feminist Response in Disability Activism (FRIDA), with the support of other disability groups, will stage an “Ashley Treatment” demonstration at the national headquarters of the American Medical Association (AMA) in Chicago at 515 N. State Street.
FRIDA will demand that the AMA start practicing real ethical accountability and dialogue with the disability community. The action is in response to the AMA’s sanction of the “Ashley Treatment” through its publication of the original case article in the Archives of Pediatric and Adolescent Medicine case. This AMA owned-journal went so far as to call for further “study” of the issue by subjecting more children to the same drastic surgeries and follow them over time.
People with disabilities and families nationwide have reacted with outrage to the drastic medical “solution” to what is actually a complex social problem of finding real supports for people with disabilities and their families. FRIDA is also not surprised that the initial recipient of the “Ashley Treatment” was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization.
Ana Mercado of FRIDA notes, “Our bodies really are the battlegrounds on which ethics debates are fought.” FRIDA seeks to protect our bodies from having to become battlegrounds in the first place. The issue at hand is not our bodies, but the choices that other people make for our bodies.
FRIDA is a group of radicalized women with disabilities representing ourselves and fighting for freedom for our bodies. FRIDA is supported in this action by Chicago ADAPT, the national ADAPT community, Not Dead Yet and Advance Youth Leadership Power (AYLP).
###
Feminist Response in Disability Activism 614 W. Roosevelt Road Chicago, IL 60607 Contact: Monica Heffner, (312) 253-7000 Blog: http://fridanow.blogspot.com/
Posted by Destineer (Member # 821) on :
quote:Originally posted by Dagonee:
quote:And on your view, could a non-Homo sapiens (eg, a sentient alien) ever be a person? How could we tell, if there are no mental criteria for being a person?
Assuming you mean a sapient alien, then one would look to the species. Is the species sapient as a whole? If so, then non-sapient members of that species are persons.
And here's my argument against this view, repeated, and hopefully more clear the second time.
Suppose I am a sentient alien, and I come across Ashley. I ask myself, "Is this creature a person?"
Holding fixed all of Ashley's own individual features, there are three possibilities:
(1) Ashley is the only member of her species. In this case, her species is obviously not sapient as a whole, so she is not a person.
(2) All other members of Ashley's species have the same problems she does. In this case, by your criterion, the alien in my example would also be correct to say, "No, she isn't a person."
(3) Many members of Ashley's species are more mentally capable than she is. If this possibility is actual, it turns out that Ashley is a person and worthy of my alien's moral consideration.
Conclusion: On your view, whether Ashley is a person depends on facts that are not features of Ashley herself. They depend on features of the other members of Ashley's species. If the other members of her species were less mentally capable, she would not be a person even though she herself would be exactly the same in such a situation.
I consider this a reductio ad absurdum of the view I quoted above.
Your reply said,
quote:No, my view doesn't say that at all. She's a living person. You moving her somewhere else without people around doesn't change that, except for the fact that she would soon be dead.
I wasn't talking about physically moving her to some other place in the actual world. Sorry that wasn't clear. I was saying, consider a creature exactly like Ashley, in another possible situation where other humans are different.
Posted by Dagonee (Member # 5818) on :
quote:On your view, whether Ashley is a person depends on facts that are not features of Ashley herself. They depend on features of the other members of Ashley's species
OK, I see the confusion now - we are using opposite cause and effects chains. I do not believe that sapience = personhood. I believe that sapience is an attribute shared by most beings that are sapient.
Personhood is an attribute. Sapience of typical species-member is a means of detecting that attribute.
Whether Ashley is a person is not based on the attributes others have. We can tell (not 100% reliably in artificial situations of determining sapience for a given species) whether Ashley is a person based on examining other members of the species. But those members do not determine that, anymore than a thermometer determines what the temperature is.
We don't have that difficulty with Ashley in this world.
quote:I consider this a reductio ad absurdum of the view I quoted above.
What you've reduced isn't actually my view.
Posted by Destineer (Member # 821) on :
I don't think sapience is personhood, though I do think the potential for sapience is a necessary condition for personhood.
I understand this aspect of your view now, and see how the reductio fails to apply.
So... what is the definition of a person? Or, if personhood can't be defined, what gives us any reason to think sapience-of-species is a sign of personhood?
Posted by Dagonee (Member # 5818) on :
quote:So... what is the definition of a person?
At this point this becomes a religious discussion.
I do think we don't need to go into religion to make legal determinations, but I don't have time to fully expound right now. I'll be back.
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by sndrake: Promised Update - not much time for anything else right now:
I'll continue to wait. Posted by Mucus (Member # 9735) on :
quote:Originally posted by sndrake: Promised Update - not much time for anything else right now:
quote:
Feminist Response in Disability Activism (FRIDA) ... FRIDA is also not surprised that the initial recipient of the “Ashley Treatment” was a little girl, given that girls, and girls with disabilities in particular, are perceived as easier subjects for mutilation and desexualization. ... FRIDA is a group of radicalized women with disabilities
Wow. People can find sexism anywhere. I mean its only a highly improbable 50% chance that the first patient would be female.
Posted by dkw (Member # 3264) on :
Really? You think it was just as likely that people would be in favor of removing a boy's sexual organs?
Posted by Destineer (Member # 821) on :
quote:Originally posted by Dagonee: You've essentially stated that a person must be alive in order to be worthy of moral treatment. Ashley is alive. Therefore she's worthy of moral treatment.
You selected an attribute that can indicate life. You could have selected a different one. The point is that Ashley isn't anywhere near the boundaries of the attribute of "life."
It appears you selected this attribute based on a misunderstanding of what "brain-dead" means. Regardless, the attribute you picked is relevant to the status of living or dead, not to the status of person or not. The same attribute (not brain dead) exists for a cat and a host of other organisms.
This is where your chain of reasoning falters: "There must be some mental criteria for being a person, or else brain-dead humans would still be people."
Your "or else" is flat out wrong.
OK, I've finally parsed this out into what I should've said in the first place.
Live people, but not brain-dead ones, are worthy of moral consideration (or at least full moral consideration). The only difference between a live person and a brain-dead one is a mental difference. Therefore, there must be some mental criteria which determine in part whether a person is worthy of moral consideration.
This can be further illustrated using the example of an animal. Take a lower animal like a mouse. That animal is unworthy of the moral consideration we offer to humans. But if the mouse were the same, except as intelligent and self-aware as a human, I think most of us would want to treat it like a person. Again, more evidence that purely mental criteria can determine whether a creature is morally important.
Posted by Mucus (Member # 9735) on :
quote:Originally posted by dkw: Really? You think it was just as likely that people would be in favor of removing a boy's sexual organs?
Why do you think her parents would be less likely to press for this treatment if she was a he?
Posted by sndrake (Member # 4941) on :
quote: Why do you think her parents would be less likely to press for this treatment if she was a he?
I don't think you get it. I don't think people are talking about the parents at all - and I know FRIDA wasn't. It's about the ethics committee - recognizing this was something "extraordinary" and who approved it.
Historically, it makes sense. One of the policy "successes" of the eugenics movement in the United States resulted in the forced sterilization of over 60,000 Americans - exact numbers are difficult to determine. Culturally, we were sloppier at record-keeping than Germans of the same time period.
But the court case that opened the gates to forced sterilization was over a woman - Carrie Buck. Hers was the case first put forward to establish the constitutionality of the practice.
I'm too tired to go around and look up numbers (the ones that exist) but I recall at least one state (Oklahoma) sterilized 3 or 4 times as many women as men.
Posted by Mucus (Member # 9735) on :
A) AFAIK from the first article. The parents were concerned about her weight, they asked a doctor which gave the treatment as an option, they thought about it and then "pressed" for treatment. From the article, I see no reason to believe that they were coerced by their doctor or by the committee into ordering the procedure, ultimately the responsibility lies with them, as it should.
Unless you're accusing her doctor or ethics committee of pushing an agenda of eugenics and coercing them unfairly into the procedure, I don't see the connection.
B) As for eugenics, you're mixing up the two issues. In eugenics they remove sexual organs to stop reproduction. From a eugenics view, it only makes sense to sterilize women. Women are the limiting factor since men can fertilize multiple women, but only women can produce children.
However, from what I can tell, her parents did not have eugenics in mind. The organs were removed as part of the procedure to help them take care of her and she could never consent to having children one way or another. Even from a eugenics POV, the removal of her organs would be redundant.
Posted by Dagonee (Member # 5818) on :
I think castration would be less likely to be approved, but I've got no articulable basis for thinking that.
The growth impediment therapy would either not work or have even stranger side effects on a boy than a girl. I don't know if there's a male analog - castration prior to puberty often leads to increases in height.
quote:Live people, but not brain-dead ones, are worthy of moral consideration (or at least full moral consideration). The only difference between a live person and a brain-dead one is a mental difference. Therefore, there must be some mental criteria which determine in part whether a person is worthy of moral consideration.
Live people, but not cardiac-dead ones, are worthy of moral consideration. This does not mean that heart function - beyond the bare minimum to qualify as living - is a criteria for determining whether a person is worthy of moral considerations.
The key is death, and heart and brain function can both be a way to determine if death has occurred. It's essentially binary, not a continuum - that is, although the gray area at the boundary condition is extremely small and based more on lack of knowledge and imprecise measuring capabilities.
Posted by Dagonee (Member # 5818) on :
quote:AFAIK from the first article. The parents were concerned about her weight, they asked a doctor which gave the treatment as an option, they thought about it and then "pressed" for treatment. From the article, I see no reason to believe that they were coerced by their doctor or by the committee into ordering the procedure, ultimately the responsibility lies with them, as it should.
Unless you're accusing her doctor or ethics committee of pushing an agenda of eugenics and coercing them unfairly into the procedure, I don't see the connection
I think you missed Stephen's point entirely. There's no accusation of coercion in the FRIDA press release. It's not about coercion in this case, it's about the valuing of female sexuality that is no longer "useful" as less important than male sexuality and a greater willingess to desexualize females. Read the blog again - the point made over and over was that her sexual attributes weren't useful to her.
The sterilization was coerced, yes, but that's not the aspect that was being compared to Ashley's situation.
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by Dagonee: I think castration would be less likely to be approved, but I've got no articulable basis for thinking that.
Same here. [edited to add: on both grounds, that is]
quote:The growth impediment therapy would either not work or have even stranger side effects on a boy than a girl. I don't know if there's a male analog - castration prior to puberty often leads to increases in height.
It looks like the family is intending to have Ashley receive high-dose estrogen therapy as well as hysterectomy and breast bud removal. The hysterectomy wouldn't stunt her growth -- it is the high dose of sex hormones that triggers fusion of the growth plates in the long bones, thus halting linear growth. I don't know if high-dose estrogen therapy at the levels they use would predispose to breast or uterine cancer, but that might be another reason for breast bud removal and/or hysterectomy (even if not mentioned in the article).
The male analogue would be high-dose testosterone therapy to initiate fusion of the growth plates.
[ January 12, 2007, 11:39 AM: Message edited by: ClaudiaTherese ]
Posted by Destineer (Member # 821) on :
quote:Live people, but not cardiac-dead ones, are worthy of moral consideration
That's false. A person with no cardiac function could be worthy of moral consideration if he weren't yet brain-dead. Indeed, this is why we take such people and hook them up to heart and lung machines or give them artificial hearts/transplants.
We don't ever hook people up to brain machines, and we wouldn't if we could. The brain is more essential to life than the heart is.
In fact, I would say that the brain's proper functioning is the only thing essential to human life. All my other organs could fail, and if my brain were still receiving life support, I would remain alive.
As for the FRIDA thing, has a procedure like this ever been ruled out for a male patient on the grounds of protecting his useless sex organs? If not, then their claim of discrimination would seem to have no foundation. How can there be an institution of discrimination with respect to a procedure that's never been done before?
Whatever the worthiness of their point about her disability, you have to admit that this part of their letter is ultra-feminist BS. It's the same sort of bankrupt reasoning that goes into feminist "critiques" of science, the legal system, etc.
Posted by Storm Saxon (Member # 3101) on :
If the medical procedures result in greater happiness for Ashley in her life, I am all for them.
Posted by Mucus (Member # 9735) on :
Dag && sndrake: I think you both are talking at cross purposes
sndrake explicitly pointed a finger at the "ethics committee - recognizing this was something 'extraordinary' and who approved it" and that "I [sndrake] don't think people are talking about the parents at all".
dag is pointing (to I assume the parent's blog) as evidence that "it's about the valuing of female sexuality that is no longer 'useful' as less important than male sexuality and a greater willingess to desexualize females. Read the blog again..."
Get your stories straight. Is it the parents or the ethics committee that is being sexist?
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by Destineer:
quote:Live people, but not cardiac-dead ones, are worthy of moral consideration
That's false. A person with no cardiac function could be worthy of moral consideration if he weren't yet brain-dead. Indeed, this is why we take such people and hook them up to heart and lung machines or give them artificial hearts/transplants.
This is a bit of a side point, but also (I think) a relevant one: Even fully dead people are worthy of some moral consideration, in the sense that we don't treat dead bodies just as any other sort of waste product. And so cadavers used for medical dissection are not to be toyed with -- people shouldn't (and, in the medical schools, are stringently prohibited from) be using dead body parts in pranks, or acting out comical skits, or otherwise treating them irreverently.
There are people who would take the genitalia of a person who had donated his body to science after death and wave it around making loud commentary on the man's likely prior sexual exploits. That would not be tolerated where I was trained, and I think it should not be tolerated.
You can see some of this moral relevance we assign (as a society) to fully dead bodies in the restrictions placed on grave robbing or the moving of cemetary remains.
---
Of course, this isn't the same moral consideration we give to living bodies, and it shouldn't be. But there is something we recognize about dead bodies that is different from other matter, and we (as a society) make decisions about what is and is not right about how such material is used. That is a moral consideration, of a sort, even if a consideration that differs somewhat in tone or extent.
I find that interesting because it makes the continuum of what qualifies as a moral matter and what doesn't less distinct than it may seem at first. It's part of what makes these topics messy, albeit important.
Posted by ClaudiaTherese (Member # 923) on :
Cedars-Sinai identifies exposure to prolonged use of high-dose estrogen as a risk factor for breast cancer, but that doesn't necessarily mean it would increase risk at the doses and duration given to Ashley. I have no idea, as I've never been involved in attempting to fuse growth plates early on purpose.
Estrogen exposure is a known risk factor for endometrial cancer and other uterine issues, but again, I have no idea if the dose and duration of what Ashley is to receive would put her at increased risk (or even if it is known by anybody whether that risk would be increased).
The hysterectomy and breast bud removal are certainly driven in some part by other considerations, as we can read in the explanations provided by the parents. For the parents, those other reasons (comfort, avoiding distress) might even be the only reasons. But whether or not there were additional medical considerations that the bioethics committee may have taken into account is unclear.
Posted by Dagonee (Member # 5818) on :
quote:sndrake explicitly pointed a finger at the "ethics committee - recognizing this was something 'extraordinary' and who approved it" and that "I [sndrake] don't think people are talking about the parents at all".
dag is pointing (to I assume the parent's blog) as evidence that "it's about the valuing of female sexuality that is no longer 'useful' as less important than male sexuality and a greater willingess to desexualize females. Read the blog again..."
sndrake and I are not interchangeable. Regardless, our "stories" are not at all incompatible.
Presumably, the case the parents made to the ethics committee was similar to the case they are making to us. Since we don't have access to the ethics committee proceedings, we look to what they considered.
My point was simply that sexuality was looked at as something to be kept if useful, not an inherent part of the Ashley as a person. If not used for reproduction or pleasure, it's not relevant. Male genitalia, in contrast, is seen as part of the larger person.
"He's got giant balls" or "he was waving his **** around" are used in non-sexual situations to comment on non-sexual aspects of the person. There isn't an analog that I'm aware of using female sexual characteristics.
quote:Even fully dead people are worthy of some moral consideration, in the sense that we don't treat dead bodies just as any other sort of waste product.
I agree there is a moral duty with respect to dead bodies. When I think about it, the moral duty is owed to a different entity. I could be summed the duty owed WRT a dead body as "a duty to the person" quite accurately, but I think of it in a distinctively different way than the duty owed to a person as a living entity. So when I used the phrase to refer to the distinct type of moral duty, I was (without at all making myself clear and without a good reason for thinking it would be clear) excluding the duty WRT to dead bodies from it. Sorry for the confusion and thanks for raising the issue so I could explain.
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by Dagonee: [QUOTE]I agree there is a moral duty with respect to dead bodies. When I think about it, the moral duty is owed to a different entity. I could be summed the duty owed WRT a dead body as "a duty to the person" quite accurately, but I think of it in a distinctively different way than the duty owed to a person as a living entity. So when I used the phrase to refer to the distinct type of moral duty, I was (without at all making myself clear and without a good reason for thinking it would be clear) excluding the duty WRT to dead bodies from it. Sorry for the confusion and thanks for raising the issue so I could explain.
No worries. It's clearly not equivalent to the moral duties involved with living people (whether that be a difference of type or extent, or both), and I wasn't trying to contradict you.
Just puzzling through. Posted by sndrake (Member # 4941) on :
I'm fried - a week of stress and lots of typing has got the region around my left shoulder blade in a painful knot. So - lack of sleep from constant waking up and more deadening from the muscle relaxant I am taking to relieve it.
Let me give y'all some links, though.
First, the American Association on Intellectual and Developmental Disabilities now has a statement about this matter on its webpage, signed by the entire board of directors. Among them, there is well over 200 combined years of experience with supporting people with disabilities and evaluating public policy. It also talks about some of the health risks that could be associated with this "treatment" that the journal article just glossed over:
quote: Brosco and Feudtner next noted that risks of harm from this “heavy-handed” manipulation are unknown for this population, and this is an issue that begs for further amplification. Estrogen has hugely important actions. Even a cursory search of the literature shows that it influences things as wide ranging as immune system function and bone growth3 (e.g., Weitzmann and Pacifici, 2006), neuroprotection4 (e.g., Bryant, Sheldahl, Marriott, Shapiro and Dorsa, 2006), and hair follicle physiology5 (Ohnemus, Uenalan, Inzunza, Gustafsson and Paus, 2006). Further, estrogen is metabolized within the central nervous system throughout life, and the negative effects of its depressed bioavailability on aging are well documented. Thus, this artificial manipulation may have many unforeseen consequences, and while optimism has its place, there is ample reason to suspect that some of these consequences will be deleterious.
Media Coverage of yesterday's protest:
NBC5 Coverage - with video (just click the "play" button underneath the picture that is to the right of the story)
BTW, this is an expansion of the AP story that is out over something like 170 outlets so far. Some of the newspapers with the AP story have included photos. Chicago Sun Times: Forever a girl ... destined to grow up (includes photo)
sndrake, I know you are generally fried and stressed and really worn out when you come here to comment, but that was just the sort of thing I wanted to ask about in the prior posts.
Is it something you think you will have time in the next few days to briefly address, or should I just move the topic on over to a new thread for more general discussion? Either way works for me, but I did want to make sure you knew that if you had any desire to specifically comment, that commentary was both welcome and sought after. (If not, though, no problem -- I can move it out of this arena to a new thread to be discussed separately.)
Posted by ClaudiaTherese (Member # 923) on :
A further comment only tangentially related to Ashley's situation, but also (I think) relevant to the topic as a whole.
The clinical assessment of "cognitive function" often does not mean the same thing as how it is used in common discourse. I was reminded of this as I sat in on a lecture by one of UBC's developmental pediatricians. I think it's worth making the distinction because it can clear up some odd incongruities that come about in discussions about what a given person's "mental age" is.
A clinician may say that a given adult "has the cognitive ability of a 7 year old," but that doesn't mean this adult can only do things that a 7 year old child can. There's a distinction to be made between "cognitive ability" and "adaptive skills," since an adult with the cognitive abilities of a 7 year old could actually also have 30 years life experience under his or her belt. So when we think of a child as comparison when we talk about an adult with a lower cognitive ability, that often really understimates the richness of life and ability for autonomy that the adult can have.
Most people (I think) wouldn't claim that a 7-yr-old child could live on his own, take care of himself, work a complicated city bus system, pay bills, and hold down a 9-5 job. But adults with Down syndrome and proper support can often do just that, even with the assessed cognitive ability of a 7-year old. The difference is in the life experience and opportunity to develop those adaptive skills.
This isn't so much a disinction to make in Ashley's case, at least not if her cognitive ability really is going to be at a 3-month-old level. There isn't much to learn as adaptive skills for that level of deficit (not that this is commentary on her ability to enjoy life, mind you, but more as an issue of autonomy, for whatever that is worth). But it's worth remembering as we talk about what life is like for somebody that merely looking at "cognitive level" is not going to give you a full idea of how this person will experience their life, day by day.
So much of the limitation of the scope is due to lack of proper support. I think that's difficult to appreciate unless one knows people with cognitive deficits, and I also think it's one of the reasons why it might be a better idea in general to focus efforts on providing supports by changing the system, rather than in trying to accomodate individuals to the system.
Posted by sndrake (Member # 4941) on :
quote:sndrake, I know you are generally fried and stressed and really worn out when you come here to comment, but that was just the sort of thing I wanted to ask about in the prior posts.
Right now, it's fried, stressed, worn out, drugged and in pain. And typing is aggravating the situation. I also don't have a clear head. Let me get back to you tomorrow morning. Hopefully, I'll have had more rest and be in less pain. But I am going to try to restrict my typing over the weekend to the greatest extent possible.
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by sndrake:
quote:sndrake, I know you are generally fried and stressed and really worn out when you come here to comment, but that was just the sort of thing I wanted to ask about in the prior posts.
Right now, it's fried, stressed, worn out, drugged and in pain. And typing is aggravating the situation. I also don't have a clear head. Let me get back to you tomorrow morning. Hopefully, I'll have had more rest and be in less pain. But I am going to try to restrict my typing over the weekend to the greatest extent possible.
I understand. It was something I wanted to get a sense of in general and for you specifically, but then I didn't want to make you feel like you couldn't post in this thread unless you talked to me! me! me! first ( ), but then I also thought it would be bizarre to talk about without specifically asking your input. Kind of replicating the problem of not asking people with experience in disability issues when making decisions about such things, you know?
But, again, I was thinking it might not be where you want to spend your brain cells right now, or it just might not be something you are interested in discussing. And to know that I'd have to ask you, and so on and so forth. But asking more than thrice is (IMO) stalkery/rude behavior.
So ... I guess I'll put it on hold until Monday, and then I might start a thread on it if I haven't heard back from you (or even if I have, depending), and I'll leave it that you are welcome to chime in at any time. Should you find yourself just not wanting to deal with it for whatever reason this weekend, then no worries. And you can focus on the part that matters to you here, if you like, without having to parse through the other sort of discussion elsewhere (unless you really want to).
Take care. Sounds like a frazzled time -- a lot to get done very quickly, and none of it likely too pleasant. You'll be in my thoughts.
Posted by Shigosei (Member # 3831) on :
I think the problem when trying to compare males vs. females in this case is that male genitalia is actually useful for something beside reproduction. At least, the penis is. The testicles, less so--and I'm really not certain that people would be more willing to remove a girl's breast buds than a boy's testicles, particularly if there was a family history of testicular cancer. Regardless, I do think the whole sexism thing is a side point. Maybe not, though...why is there no objection to the removal of her appendix?
Here's the thing that makes the issue fairly complicated: there are some genes out there that carry a high likelihood of breast cancer (up to 80% for BRCA1). Many women have a preventive mastectomy if they know they have the gene. Maybe the "family history of breast cancer" is not that definitive, but it's possible that Ashley is seriously at risk. Most parents would probably not have a child her age undergo a breast-bud removal. However, those children will be able to give consent before the age where they would be likely to develop cancer. It sounds as if Ashley will probably never be able to give informed consent, thus it makes sense to do the surgery now while it's still much simpler than a full mastectomy would be.
The hysterectomy seems to be to be far less justified. If the periods really are that much of a problem, they can always be suppressed with contraceptives. And the hysterectomy will not be much more complicated later, unlike the mastectomy.
I think the growth-stunting was probably a bad idea. I would not want to see that repeated with other kids. There are better ways of dealing with the problem, I think.
Posted by sndrake (Member # 4941) on :
A little nugget embedded in Lindsey Tanner's AP article:
quote: The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.
I want to highlight that part, because it's important and it hasn't been part of the discussion - not here and not in the media coverage (I don't think it was addressed in the journal either).
Many states passed laws prohibiting forced or nonvoluntary sterilization in an attempt to "make amends" for the sterilization program in this country that resulted in 60,000 or more men and women being subjected to this drastic measure.
In those states, an ethics committee would not have had the power to sanction this procedure. It would have had to go before the court - and I think the girl would have had a guardian ad litem appointed.
Posted by sndrake (Member # 4941) on :
Disability Rights representative on Larry King tonight! (I think this is a first for Larry King)
quote: On Friday, January 12 at 6:00 p.m., Beverly Bertaina, Chair of the Board of the Disability Rights Education & Defense Fund (and the parent of a son with a disability), will appear on the Larry King Live Show on CNN to discuss the case of Ashley X, a nine year old girl with intellectual and physical disabilities.
When she was six, Ashley's parents requested that their daughter be treated with medications (large doses of estrogen) to halt her physical growth, and with surgeries to remove her breasts and uterus. They believe that altering her body will make her more comfortable and allow them to better care for her as she becomes an adult. These interventions were undertaken at the Children's Hospital of the University of Washington, School of Medicine in Seattle, after consultations with the medical center's ethics committee.
First off, the sterilization laws have HURT my brother. He is mentally retarded, and because of that, no doctor will perform a vasectomy without having several conversations to talk him out of it. He is extremely interested in getting married, he loves women and always has. However, he is no where near capable of caring for a child, even with assistance. He lives in a group home right now, and there is a female who also lives there (along with three other males). They have both been saving up money, and are interested in getting married. There would be little problem in them getting married as long as there wouldn't be any chances of children. Unfortunately, since neither of them can be "sterilized" there is no safe way to absolutely ensure they could have sex and not produce a child. You may judge me and my parents and the girls parents for thinking that a child is totally out of the question, but since you don't know these two people, your judgements are flawed. There is almost no chance that a child from their union would be mentally healthy. There is absolutely no chance they could keep the child and care for it. Her parents are old, and mine are tired, they cannot raise another child, espescially not a handicapped one, and it is very very difficult to find adoption placements for retarded children. Thus, because it would be wrong to allow a child into existance, two disabled adults are not allowed to enjoy their lives to the fullest potential because of a law designed to "protect" their dignity.
I find Ashely's situation similar. She is not aware enough to know that she SHOULD grow up. Therefor, keeping her small will never hurt her. I am somewhat concerned by the high doses of estrogen, because hormones can be dangerous, but I'm assuming that they've talked about the risks with the doctors, and feel they are acceptable considering her condition. Bed sores and blood clots are also dangerous, so keeping her "mobile" is very much in her benefit. I had a 3-year-old who was handicapped just to the point where she couldn't walk (among other things, but she could sit and crawl), and it was already very difficult to care for certain aspects of her life when you had to carry her and manuever a body larger than an infants for "infant" like care tasks. Before you curse her parents for defiling her life, walk a mile in their shoes, and feel the love they have for their daughter.
As far as setting a precedent goes, you're right, it is "dangerous" to some extent. There are many disabled children who grow up to be productive adults, and enjoy being adults. However, there are equally as many who never DO really get to be adults, and their adult size is actually a hinderence to them. As a matter of fact, if you could stop many of them from reaching puberty, they may truly love it. A person who appears ten and wants to play on the playground does not face nearly the number of social problems as someone who looks 30. That is a tricky issue though, and I can understand why people are scared to touch it. However, in cases where the person will NEVER be able to get any advantage from having an adult size or body, then it makes simple sense to keep them small as long as it is not medically damaging. They will enjoy their life much more without the added hinderance of bulk that makes it difficult to move them, and as a rule, the younger a disabled person looks, the more tolerant society is.
I ask you all to really look at the practicality of it before you take the moral high ground. I know I'm not the only one with personal experiences with different levels of disability. I know that a child who seems hopeless can turn the tables and become remarkable, my other adopted brother did that. However, there are real intense strains that disability puts on people and families. There are real heartaches, and they differ from person to person. Think about what life is like for Ashley's family, and stop making arbitrary judgements of them based on fantasy driven pipe dreams possibility and moral high roads.
Posted by Eaquae Legit (Member # 3063) on :
Is it just me, or is the disability rights side of things getting a heck of a lot more airtime than usual for this sort of issue? While it's encouraging, it must be a horrible amount of work for you, Stephen. Oi.
And thanks, CT, for saying more clearly what I tried to express in my first post here, about "mental age."
It's driving me nuts that people are still thinking of life in a community home or care home as being a fate worse than mutilation. I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!
(Edit: And I'm wondering where my own voice fits into this, much like CT.)
[ January 13, 2007, 12:40 AM: Message edited by: Eaquae Legit ]
Posted by Eaquae Legit (Member # 3063) on :
quote:as a rule, the younger a disabled person looks, the more tolerant society is.
Then "society" needs to grow the hell up.
Posted by Dagonee (Member # 5818) on :
quote:Think about what life is like for Ashley's family, and stop making arbitrary judgements of them based on fantasy driven pipe dreams possibility and moral high roads.
I'd appreciate it if you could point out the "fantasy" element in any of the posts that have presented fleshed out arguments as to why this treatment is wrong.
None of those that I read (or wrote) depend on the chance of a cure for their conclusion, although the possibility was brought up by some people.
quote:Before you curse her parents for defiling her life, walk a mile in their shoes, and feel the love they have for their daughter.
I find your rejection of the possibility that people opposing this have walked a mile in their shoes or felt the love these parents have for their daughter to be puzzling. Perhaps you could cite some evidence that, for example, the two people with actual experience caring for disabled adults can't appreciate what's at stake here.
quote:I'm assuming that they've talked about the risks with the doctors, and feel they are acceptable considering her condition.
This is the problem: the people making the decision, in general, systematically fail at objectively considering her condition. In fact, they generally reject the input of those with first-hand experience in living with a disabling condition when forming the standards that give are used in making these decisions.*
In your own post, you've emphasized the difficulty of caring for large disabled people and the perception society has of them as part of your justification for such treatment. The doctors are weighing incredibly serious risks as well as actual organ removal against, in part, ease of care.
*And yes, I'm aware Ashley couldn't actually give input here. The systematic misunderstanding of how the disabled view their own life is presented as evidence of the larger failing to fully consider the "condition."
Posted by ClaudiaTherese (Member # 923) on :
quote:Originally posted by Eaquae Legit: It's driving me nuts that people are still thinking of life in a community home or care home as being a fate worse than mutilation. I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!
(Edit: And I'm wondering where my own voice fits into this, much like CT.)
EL, you have been often on my mind since your post with a (brief, modest) plea to have you and your life's work taken into account. I was wanting to get a sense of how I fit with what sndrake wants out of Hatrack, but when I read your post, it occurred to me that this might be a larger question to address.
We probably could use a separate thread on this, too, but I wouldn't want that to supplant your concerns raised here. I also don't want to be speaking for you, but I do think I understand where you are coming from.
Posted by dkw (Member # 3264) on :
EL, I want to thank you for your posts, expecially the first one. (I think it was the first anyway, haven't gone back to check.) They've really helped me clarify some things that were just nagging at the back of my mind about this.
Particulary that if the parents had not gone this route, Ashley would not have to have been left to lie in her room staring at the TV all day and be left out of family activities. They would have had to trade her modified baby stroller for a specialized wheelchair, and made their house handicap accessible, which would have required a lot of work and money, but it would have been possible. It aslo made me wonder if insurance covers the medical solution but not the rennovations that would have been needed to the house.
I'm sure the parents did what they truly believe was best for their daughter, but I'm also sure that at least part of that was because they were overwhelmed with the idea of caring for her as a full-sized adult. The hospital should have put them in touch with people who are doing a good job of caring for adults in similar situations so they could see that it can be done.
I also think part of the unconscious motivation was what was just identified -- society is more accepting of cute disabled children than disabled adults. When they get big they're not so "cute." To which I agree with EL that it's society that needs to grow up.
Posted by ClaudiaTherese (Member # 923) on :
I just went back to your first post, EL. It was probably still percolating in the back of my mind when the topic of adaptive skills came up again in another area of my life, which was probably why I associated it with this topic. Thanks.
I'll quote you again here, because it does bear repeating. I was thinking of adaptive skills, which may not be as relevant to Ashley's circumstances, but you elaborate much further.
quote:3. She's not a three-month-old. Her mental capacity should not be used as a marker for her physical and experiential age. ... Whether she lacks the capacity to understand indignity is irrelevant. She is a human being and must enjoy the exact same rights and dignity that "normal" people do. As I've said before, she is not three months old. She's 9. Someday, she will be 15. 30. She will still not be three months old. She will have the mind of a 30 year old who has the capacity of a three month old. That may seem like a ridiculous thing to say, but it's true. There is nothing grotesque about a 30 year old having a 30 year old's body. It is an indignity to her to insist that she must remain a child.
---
Edited to add:
quote:Originally posted by dkw: I also think part of the unconscious motivation was what was just identified -- society is more accepting of cute disabled children than disabled adults. When they get big they're not so "cute." To which I agree with EL that it's society that needs to grow up.
It seems odd and scary to me to contemplate a world where the accepted norm for people with severe cognitive dysfunction is that they look childlike. How very, very odd and troubling. What do we do about people who lose cognitive functioning later in life, after they are already typical-sized (through a motor vehicle crash, or degenerative disease, or something else)?
Wow. People with later-acquired cognitive deficit would become even harder for others to accept as just other people, I think. Sometimes it seems like there is always going to be a push to view different as bad. When we try to just make people less different, that drive just (I think) gets stronger. That's bad for everybody, even the temporarily-less-identifiably-different ones, like most of us posting here.
---
Edited again to clarify: Not to imply that it's only bad if it's bad for other people. It can (and is, IMO) bad in itself.
I find it more useful in general to think of people in general as temporarily-able-bodied than not-disabled, and not just for PC reasons. It seems to be a more accurate portrayal of the world. On the other hand, saying "this is bad for everybody" may be taken to indicate that if it wasn't bad for everybody, then it wouldn't matter. I don't want to leave that impression, either.
Just ... wow. If the going notion were that "if you're going to be different, then you'd better be childlike," I'd find it additionally horrifying in all sorts of ways. It would make an awesome and scary sci-fi novel, though.
[ January 13, 2007, 12:04 PM: Message edited by: ClaudiaTherese ]
Posted by Fyfe (Member # 937) on :
I think it's absolutely vicious to suggest that the parents wanted to keep their daughter looking like a child so she'd be "cute", rather than letting her grow into an adult, when she would no longer be "cute". From everything I have read about these parents, they are trying to maximize the length of time for which they will be able to give Ashley the best possible care.
It is really, really, really hard to care for a family member with disabilities this severe. It's an incredible drain on the family, and the more drained the family becomes, the less good the care gets. I have been watching it happen with my aunt for years. Whether or not we agree with the parents' decision, I find it awfully hard to believe that their motivation is wrong.
Posted by ClaudiaTherese (Member # 923) on :
Fyfe, I'm myself working under the assumption that the parents are trying to do what's best for their daughter and have only good intentions. I think EL and dkw are, too, though they can speak for themselves to reclarify if not.
Our culture as a whole does seem to have a problem with this issue, though, and I think it is possible to speak to the culture without marking out the individual family here.
I am sympathetic to the parents' dilemma in ways I haven't yet discussed here. I have a family member with severe autism who is quite tall, quite heavy, and quite strong, and at times, he is quite violent. He has hospitalized a caregiver in the family and cannot be taken care of at home anymore. This is a different case with different issues than Ashley's, but when I read the first link, all those long family discussions came back to mind. For me, it was a matter of remembering how many difficult and painful details lie behind the simple story of dealing with unexpected circumstances like this. I don't think anyone in my family would have suggested making this family member child-sized for life, even knowing what was ahead, but nobody involved could really have anticipated everything that lay ahead. From the outside, you just can't.
Still, I have no doubt that this family member would have been treated differently in public places if he were child-sized than as he is being 6'8, 280 lbs. That part is there, too, and I think it should and can be discussed.
Posted by Storm Saxon (Member # 3101) on :
quote: There would be little problem in them getting married as long as there wouldn't be any chances of children. Unfortunately, since neither of them can be "sterilized" there is no safe way to absolutely ensure they could have sex and not produce a child. You may judge me and my parents and the girls parents for thinking that a child is totally out of the question, but since you don't know these two people, your judgements are flawed. There is almost no chance that a child from their union would be mentally healthy. There is absolutely no chance they could keep the child and care for it. Her parents are old, and mine are tired, they cannot raise another child, espescially not a handicapped one, and it is very very difficult to find adoption placements for retarded children. Thus, because it would be wrong to allow a child into existance, two disabled adults are not allowed to enjoy their lives to the fullest potential because of a law designed to "protect" their dignity.
My heart goes out to you and your family, DDDyash. I hope everyone finds a way to get what they want. I know exactly what you are going through.
quote: The hospital should have put them in touch with people who are doing a good job of caring for adults in similar situations so they could see that it can be done.
The central, underlying issue of the OT for me is that there is a fundamental problem with funding for LTC. While none of the articles that I've read have said that this was an issue for the family, I know it is for many people who would like to get LTC for their loved ones.
Posted by quidscribis (Member # 5124) on :
quote: I know it is for many people who would like to get LTC for their loved ones.
Very true.
It can also be very very difficult to get good respite care. There's only so much funding and so many spots and it can take a long time to get in with a facility that offers such or to get an in-home worker who treats the clients well.
I know there are decent care givers out there - various extended family members have been treated very well by some - but there don't seem to be enough.
But more than that, there also - in British Columbia and Alberta, at least, although I have no reason to believe it's not the same everywhere else - a serious lack of information available to those who need care givers, whether for long term, short term, or respite care. Even when they're paid for through the provincial medical plans, often enough, patients & their families aren't aware of the options. They're not always told about possible funding, programs, whatever.
It can take a lot of time - and a lot of paperwork and chasing people down - to find out what's available and to get it implemented, and for families who are already overburdened with caring for a disabled family member, that can become an impossible chore.
Posted by sndrake (Member # 4941) on :
Since I figure there are some people who might still be curious, I wanted to point folks to what is unquestionably the best article on the "Ashley Treatment" that I have seen. Salon occasionally publishes some first-rate investigative reporting and this was one of those times (the piece in AMA Medical News was a "fluff" piece in comparison). The article includes interviews with staff at the Seattle Hospital where this procedure was approved and with other professionals from around the country. Here's the link and a couple of paragraphs: Behind the Pillow Angel
quote:Again, the lack of detail about the discussion inside the Seattle hospital has medical observers concerned. "If we don't know exactly the reasoning and the debate that took place formulating that position, there's no way to understand how [the ethics committee and doctors] thought it through," said Feudtner. "It would be analogous to a judge rendering a verdict with no published ruling. This lack of an auditable record leaves any internal dissension or debate squelched from view, leaving the sense this was an easy decision for the committee to make, when that may not have been the case."
The presence of bioethics panels or consultants at other hospitals offers Feudtner little comfort. Medical bioethics is a relatively new field. While nearly all hospitals now have some kind of ethics board or consultant, 72 percent have no process to evaluate themselves, according to a report to be released later this month by the American Journal of Bioethics. There are no national standards or guidelines for ethics committees to follow. There are no standard ethics committee guidelines that aim to address the prejudices and preconceptions, even very subtle biases, of its members. Less than half of all people who conduct ethics consultation have had any formal training.
This part of the article echoes some of the comments made in our own press release, in which we said that ethics committees could serve as "end runs" around constitutional protections.
For other info on developments since this thread dropped off, you can check out the following URL(contains links to statements, blogs and articles): A Disability Community's Response to Ashley's Treatment Posted by Eaquae Legit (Member # 3063) on :
Thanks, Stephen. I hadn't realised that l'Arche had released a statement. I'm really glad to see it. If anyone else reads that article, I will say that every word in it is true. I know Beth (the author) and Karin. I lived with Karin for four months, and she is a wonderful, complex woman. It's usually her in my mind when I read about things like the "Ashley Treatment." The "what if" questions Beth raised are exactly what go through my mind.
When I get back from doing my laundry, I'm going to read through the rest of my articles. But that one really made my day.
Posted by Icarus (Member # 3162) on :
quote:Originally posted by ketchupqueen:
quote:I lived in a community where such children spend a full day in a classroom, 5 days a week. It may not come out of "health care" dollars, but there seems to be assistance available.
I have never seen a child with this level of disability in the classroom. I'm not saying that it doesn't happen-- but at some point the State of California (where I live) draws the line and considers a child "unable to learn", and medically exempt from schooling. At that point the school district does not even have to offer "quality of life" training as it does for extremely retarded children who are unable to benefit from a regular or adapted curriculum. As many Special Ed teachers I know will tell you, "We're not a babysitting service." Classrooms are divided by ability to learn and learn on different levels and at different speeds, some with special helpers-- but if they can't teach a child at least the basics of taking care of him/herself, they consider that he doesn't belong in school. Maybe it's different where you grew up, but that's what I've seen here, and what state law says, last I checked.
I am a teacher in the community I assume Bob is talking about, and I can tell you that we have kids in my school who are just babysat all day. FWIW. I don't know anything at all about whether "schooling" is mandatory (I would hope not) for such children or whether it is simply something the state offers to allow parents to hold jobs.
Posted by ClaudiaTherese (Member # 923) on :
sndrake, I'm glad to see it was a more contested decision behind the scenes than was initially presented by the hospital. That is, indeed, very good to know.
But I also find this troubling:
quote:In early 2004, at age 6 and a half, she started to grow pubic hair, develop breast buds and enter a growth spurt. Her parents feared that if she continued to grow at this rate she would become too large to care for in the home.
If that is truly what the parents are saying, then they are completely misunderstanding the medical aspect of this. Early puberty means smaller adult size, and this puberty would have been early enough to constitute a medical disorder. Hmmm. (?)
---
Edited to add: Ah, this was noticed by others, too.
quote:What also has Merkens and other doctors and bioethicists worried is that key details of the case have been kept hidden. The article on the Ashley Treatment in the Archives of Pediatrics and Adolescent Medicine left out several critical details. The authors wrote that Ashley had begun her growth spurt but omitted what percentage of her final height she had already achieved. If she had already reached 85 percent of her final height, the hormones may only have saved her an inch or two, said Dr. Robert Nickel, a developmental pediatrician at the Oregon Health and Science University in Portland.[emphasis added]
Posted by sndrake (Member # 4941) on :
quote:sndrake, I'm glad to see it was a more contested decision behind the scenes than was initially presented by the hospital. That is, indeed, very good to know.
I'm not heartened by this at all.
I look at this passage, for example:
quote:"There weren't easy answers here," Diekema said. "People didn't agree at the beginning what to do. But we heard arguments and debated and discussed and ultimately pretty much reached agreement to let the parents have these things done. Everybody left the room with some reservations because there are uncertainties. But nobody left the room feeling like we were making a big mistake. We thought the benefits were more likely to occur than the potential for harm. I think that even the most reluctant person in the room felt that this was at least a draw."
Further, Diekema, the committee chair, says that there was no vote. How was "consensus" achieved? On what basis does Diekema feel confident that he knew how people felt?
To me, this has some of the classic signs of "groupthink"
quote:Groupthink is a type of thought exhibited by group members who try to minimize conflict and reach consensus without critically testing, analyzing, and evaluating ideas. Groupthink may cause groups to make hasty, irrational decisions, where individual doubts are set aside, for fear of upsetting the group’s balance. The term is usually used as a derogatory term after the results of a bad decision.
Symptoms of Groupthink:
quote:In order to make groupthink testable, Irving Janis devised eight symptoms that are indicative of groupthink (197).
1. A feeling of invulnerability creates excessive optimism and encourages risk taking.
2. Discounting warnings that might challenge assumptions.
3. An unquestioned belief in the group’s morality, causing members to ignore the consequences of their actions.
4. Stereotyped views of enemy leaders.
5. Pressure to conform against members of the group who disagree.
6. Shutting down of ideas that deviate from the apparent group consensus.
7. An illusion of unanimity with regards to going along with the group.
8. Mindguards- self-appointed members who shield the group from dissenting opinions.
To me, it looks like numbers 1, 2, 3, 5 & 6 could all have been at work in this committee. And, given the lack of training and standards reported for ethics committees, there's every reason to think that this committee is far from the only one vulnerable.
Given that ethics committees make life and death decisions - and in this case made a decision almost as far-reaching as a precedent-setting court case - I think that the role of these committees need to be examined and whose needs they really serve.
Posted by ClaudiaTherese (Member # 923) on :
I am just glad that some physicians raised objections at all. I know this is like being thankful that your head was cut off rather than that you were boiled alive in oil, but I was starting to think that the pack of physicians involved were complete idiots. Partial idiocy may not make much difference to Ashley, but I find it less discouraging (amongst many possible scenarios of discouraging).
I am still troubled by the bizzarely backwards interpretation of endocrinology attributed to the parents. Bad reporting or just foggy understanding on the parents' part? Either way, if she really was going into puberty at that time, then why the heck were they arguing to induce puberty? What the heck?
Posted by sndrake (Member # 4941) on :
quote:That's right folks, on Tuesday, February 20 at 2 pm, FRIDA/ADAPT/Not Dead Yet is scheduled to meet with AMA CEO Dr. Michael Maves and AMA Board Chairman Dr. Cecil Wilson, who is in Chicago from Florida for the day. At this meeting, we will open dialogue on our demands.
More on the demands later. This is a big deal - the AMA doesn't generally bother to listen to anyone other than its own members.
Didn't take much...
*A protest outside their national office;
*A phone/fax/email campaign;
*Letters from the former director of the Rehab Institute of Chicago and disability activists' new best (cough) friend, Art Caplan;
*A small but vocal protest at the DC Advocacy conference of the AMA last weekend.
In a recent job search announcement, the AMA described itself as (if memory serves correctly) something along the lines of the "preeminent authority" on medical ethics. With an unknown number of parents clamoring to get this experimental procedure done to their own kids, the AMA can't just sit back and let things sort themselves out through ethics committees. Not if they want their claim to authority to be in any way credible.
Posted by sndrake (Member # 4941) on :
Update: Coverage of the meeting of the AMA and disability activists:
quote:After five weeks of protests, Chicago-area disability rights activists gained a meeting with the chairman of the American Medical Association Tuesday to discuss the much-publicized Ashley X case.
Five representatives from the disability community met with Dr. Michael Maves, CEO and Chairman of the Board of the AMA at the Chicago headquarters, to discuss the so-called "Ashley treatment," in which a 6-year-old girl was purposely made small for life.
quote:CHICAGO - The American Medical Association bowed to pressure from disabled activists and met Tuesday to hear their opposition to growth-stunting treatment performed on a severely brain-damaged girl.
The now 9-year-old girl identified only as "Ashley" had surgery in Seattle to remove her womb and breast buds, and hormones to keep her permanently child-sized - treatment some activists say amounted to mutilation.
Posted by Storm Saxon (Member # 3101) on :
What happens if the AMA doesn't do anything after the meetings?
Posted by sndrake (Member # 4941) on :
Can't honestly say, Storm. I'm not the primary water-carrier on this -- just playing support, mostly.
However, there are plenty of other types of pressure tactics that can be used over time and a lot of people across the country who would like to help with the effort.
I'm guessing there'll be some concession (originally they weren't going to meet at all which is why the AP reporter wrote her lead-in that way).
They're not stupid. They can tell that there's a lot of criticism coming from the disability community and the medical/bioethics community. Activists found ways to keep up the pressure, and the core groups are headquartered here in Chicago, which is also where the AMA is headquartered. The weather is going to get warmer, making rallies and protests easier and less hazardous to the health.
And guess where the AMA national conference is being held in June?
These things are notoriously hard to predict, but I suspect there will be some movement on the AMA side - probably as little as they figure it will take to get the heat off.
Posted by Lavalamp (Member # 4337) on :
It may interest you to know that the AP news coverage of the meeting showed up on my Wii last night.
Posted by rivka (Member # 4859) on :
Wiis get news? *blink*
quote:Her parents say the treatment makes Ashley more portable
*flinch* Was that word choice deliberate or unfortunate?
quote:"Most of the supportive ones are thoughtful" and show that the senders have read the family's blog. "Most of the critical ones are clearly knee-jerk one or two sentence reactions" that appear to be reactions to sensational media headlines, the parents said.
How incredibly shocking that the would see it that way.
quote:. . . said Diane Coleman of Not Dead Yet, who also attended the meeting.
Posted by Fyfe (Member # 937) on :
I'd be interested to know how many of the people who are voicing such vehement outrage about this family have actually been in the position of caring for an Ashley.
Posted by AvidReader (Member # 6007) on :
Fyfe, my problem with your question is that it depends on how a person views morality. Some people see it as greatly nuanced and situational, like in your question. Others see it as absolute. So probably half the board sees your question as irrelevant.
Besides, deciding right and wrong from an objective position is usually safer than when we're in the middle of an emotionally charged situation. Humans can rationalize anything.
Posted by Dagonee (Member # 5818) on :
quote:Originally posted by Fyfe: I'd be interested to know how many of the people who are voicing such vehement outrage about this family have actually been in the position of caring for an Ashley.
Here's at least one:
quote:"It was definitely a victory to at least have the dialogue that we had," said Donna Harnett of the Feminist Response group, who attended the meeting.
Harnett started a blog Monday to counter Ashley parents' blog. It includes photographs of Harnett's disabled 11-year-old son, Martin, whose medical problems are similar to Ashley's.
The Harnetts want "to show other families and inform the public that there is an option available other than the 'Ashley Treatment.' That option is to let a child grow into adulthood and exist as the human being they are destined to become," the blog says.
At least one person who has posted on this thread does so professionally.
I'd be interested in how many of the people voicing support for removal of organs and stunting of growth have been disabled.
Posted by Lavalamp (Member # 4337) on :
Fyfe,
Dagonee made a good pitch for NOT deciding that one should remain silent on moral issues simply because of a lack of direct experience. I think it's back on page 1.
I interpreted your question as asking something more along the lines of "how many people who are against this without actually having thought much about it have no direct experience with a similar situation."
Otherwise, your question would seem to leave no room for even an examination of the moral nature of the situation -- sorry, you haven't been in their shoes so your opinion doesn't matter.
In examining my own stance on this issue, I learned that the ethics review at the hospital was not unanimous, but rather a very close call. Does the family's website convey that? I didn't come away from their presentation with the impression that the decision was close at all.
I have lots of questions about why this seems to them to be the BEST solution for their daughter. What alternatives were considered? What assistance is available to them now and, more importantly, in the future (when presumably the size and weight of the girl will become increasingly important as the parents age. What do other people in this situation do? Is this a common decision or are these folks the first ones to have this particular surgery done on a dependant? Where did they get the idea in the first place? Are there medical disbenefits to the girl?
And those are the questions that don't even directly touch on the moral implications, or the rights of people who are completely dependent on caregivers.
Just because MY initial reaction to this was to be squicked out doesn't mean that I (and others) are incapable of forming an informed decision, asking intelligent questions, or engaging in an open discussion of it.
just sayin'
Posted by ClaudiaTherese (Member # 923) on :
Because of how difficult it is to know in advance what such a situation would be like (both ways: how many challenges it raises and how much support can and should be available), I don't fault the parents for pursuing this. I think they were afraid of the big bugaboo of Disability. But I do fault the professionals if they did not acknowledge these parental fears and then explain how they can be addressed in ways other than major surgery and high hormonal therapy.
And the parents' understanding of early puberty and what that means seems utterly abysmal. It does not give me any confidence in their understanding of other areas of prognosis or therapy outcomes.
Posted by Lavalamp (Member # 4337) on :
I agree. I also think they probably have a very high cognitive barrier to seeing any downsides at this point. Basically, if they were to become convinced that they'd ultimately made the wrong choice, their lives will take on a certain nightmare aspect.
I think there's plenty here to discuss at the level of the AMA and individual hospitals' medical review boards. And that discussion need not necessarily reflect poorly on Ashley's parents. My heart goes out to them even though I believe this procedure shouldn't be performed if there are other alternatives.
Posted by sndrake (Member # 4941) on :
quote:I think there's plenty here to discuss at the level of the AMA and individual hospitals' medical review boards. And that discussion need not necessarily reflect poorly on Ashley's parents. My heart goes out to them even though I believe this procedure shouldn't be performed if there are other alternatives.
I am waiting for the AJOB article to come out. Once it does, I'll read it and write up an article I am already thinking through about "groupthink" and ethics committees.
I've always liked the Galbraith quote: "Never understimate the power of very stupid people in large groups."
There's a flipside: "Never understimate the capacity of a small group of smart, moral people to collectively make stupid, irrational and immoral decisions." (Drake, 2007)
I have to add that I started out with a halfway charitable attitude toward the parents, but I've pretty much turned into an "attack dog" where they are concerned, especially when people (like on a radio show yesterday) ask me what anyone has doing judging this "private" decision.
Let's get the chronology straight:
The article was published in October 2006 and received little attention in the press. Nevertheless, at least two major advocacy organizations for people with developmental disabilities submitted letters of protest to the journal.
In January, the "Ashley Treatment" became a big news story.
Why?
Because the parents published a blog - and part of the purpose of the blog was to encourage other parents to do the same thing with their own children.
So... To put things bluntly, they didn't put up a blog because people were talking about them and they wanted to get their side of it out. They published the blog because nobody was talking about it and they wanted more attention.
They are the ones who decided this should be a public and political policy debate.
I can and do question their motives in regard to their actions in regard to their advocacy. Posted by rivka (Member # 4859) on :
Good point, Steven.
Posted by sndrake (Member # 4941) on :
Thanks, rivka.
But outside of Hatrack it seems like any criticism of the parents is out of bounds.
Makes things dicey since criticism of the procedures are also (correctly) interpreted as criticisms of the parents.
I'll be interested to see what kind of flack John Hockenberry gets from what he just posted about this (Hockenberry is a wheelchair user and was a journalist with NPR and NBC for many years). He doesn't mince words:
quote: I am not going to argue that Ashley’s parents are immoral or unjustified in what they did. I will argue that they are no longer Ashley’s parents. Regardless of their love and affection for their daughter their decision to remove her breasts and uterus and maintain her in a state of pre-puberty is not a parental decision. It is more the kind of control one might enforce on a pet to manage the relationship. It is something a farmer managing the productivity of his or her operation would naturally enforce on livestock. This would be done humanely, morally, and no-doubt with considerable tender affection and love for the subjects. There would be no outcry and no controversy, yet no one would confuse these acts of husbandry as parenthood.
***
Caregivers who are parents in the eyes of the law have the option to do anything they want in a case like this. Clearly there is no law standing in the way of doctors performing these sorts of procedures nor is there likely to be. Ashley’s parents are undoubtedly humane, caring, loving, custodians of their “Pillow Angel.” They are just no longer parents. It’s a choice they, themselves made.
I've excerpted just a couple of paragraphs here. I really recommend reading the whole piece - it's one of the best I've seen over this past couple months.
Posted by rivka (Member # 4859) on :
My favorite bit is this:
quote:The idea of parents wanting their children to remain young babies is a longing that is familiar and this longing is not to be begrudged to Ashley’s parents. Yet to medically enforce such a longing on the grounds that these parents will be better caregivers for disabled Ashley for longer can hardly be justified as a right or responsibility of parenthood. I am undoubtedly better able to care for and protect my two five year olds if I keep them from growing up and never let them out of my sight. It is equally certain that I would be taken away to the funny farm if I tried to make it happen.
Posted by sndrake (Member # 4941) on :
Breaking News:
This release isn't on the web yet, but is making the rounds via email. There will be lots more info on Tuesday, May 8. For one thing, the full report mentioned below will be emailed to me - but it should also be available online sometime Tuesday.
Edit: I had to delete the press release as there has been some confusion about the status of its ability to be distributed (it's got an "embargo" date on it, telling the media not to report until the day of the press conference). I received two copies in email from third party sources, one with the embargo status and one without.
I contacted the national office and they were aware that the info had kind of flown out of control (it's to be expected when you send it via email to hundreds of people). At the time, they seemed to be adjusting to the fact that it's out there and didn't express concern about further distribution.
Now they are freaking so I am taking it off until Monday night when I'll post it again.
But summary of press release is as follows:
**Washington Protection & Advocacy, a private, nonprofit organization that protects the rights of people with disabilities, investigated the "Ashley Treatment."
**Investigation revealed that the hospital violated the state law and the child's constitutional rights by performing the sterilization without a court order.
**The hospital admits this, is very sorry, and has a plan to make sure it doesn't happen again.
There will be a press conference at Seattle Children's Hospital on Tuesday, May 8, with representatives of the hospital administration and the disability community.
I'll repost on Monday and issue the link to the full report when it becomes available.
[ May 04, 2007, 04:12 PM: Message edited by: sndrake ]
Posted by Dead_Horse (Member # 3027) on :
Thank you for posting this, Stephen. I am looking forward to seeing the report. It's nice to know that a court order was required by law in this situation, even though it was not obtained. It's good that the hospital is taking responsibility and adding safeguards, too.
Rain
Posted by Eaquae Legit (Member # 3063) on :
Thanks, Stephen.
Posted by sndrake (Member # 4941) on :
Rain and Alison,
You are welcome. I'm wondering if I should do a separate thread just on this breaking development or not. The reappearance of the thread might look like "old news" to most people.
As to the hospital, I don't think they had a choice but to admit they broke the law and then to formulate a corrective plan.
To me, this should spark many questions about ethics committees in general. The only reason we know this hospital and its ethics committee ignored the law is due to an outside investigation. The reason there was an investigation at all is because this all went spectacularly public - with the publication of the journal article and the publication of the parents' blog. If this had never become public, the breaking of the law would never have become known.
How often does this happen with hospitals and ethics committees? Most of these matters don't become public or get reviewed by outsiders.
I'm not suggesting I have an answer. There is a glaring lack of data, which is the way the medical profession likes it.
But people who suggest this is *rare* aren't making data-based statements, either. They don't know and shouldn't pretend that they do.
Posted by ElJay (Member # 6358) on :
I definitely thik this deserves it's own thread, unless Kasie happens by and can change the title. Thanks for posting it.
Posted by Eaquae Legit (Member # 3063) on :
I'd enjoy seeing a new thread, too.
Posted by sndrake (Member # 4941) on :
Two votes is enough for me.
Done!
Posted by sndrake (Member # 4941) on :
OK, I didn't bother to update the press release section. Sorry about that.
But, as promised, here's the site you can go to for the full report in pdf(I'll post some links to news stories later): Washington Protection & Advocacy System
And as an added bonus, here's the executive summary for your reading pleasure. And it confirms my suspicions in terms of "groupthink.":
quote:WASHINGTON PROTECTION & ADVOCACY SYSTEM
The following is an excerpt from the Investigative Report Regarding the “Ashley Treatment”
Executive Summary
• The Washington Protection and Advocacy System (WPAS) is the federally mandated protection and advocacy (P&A) agency for the state of Washington. The P&As, which exist in every state and territory, are “watchdog” agencies with legal authority under federal statutes to investigate allegations of abuse and neglect of persons with disabilities and to advocate for their legal and human rights.
• Pursuant to its federal authority, WPAS initiated its investigation of what happened to Ashley in regards to her “Ashley Treatment” after publication of a medical journal article describing the medical interventions provided to a young child with developmental disabilities and suggesting it might be appropriate for others. WPAS also received numerous complaints after widespread media coverage of the situation.
• Ashley is a girl with developmental disabilities who was six years old at the time the interventions began. The intervention included surgical removal of her uterus and breast buds, as well as high-dosage hormone therapy to limit her growth and physical sexual development.
• The Washington Supreme Court has ruled that when a parent or anyone else seeks to sterilize an incompetent individual with a developmental disability, the individual must be afforded due process and a multi-factored test must be proven by clear and convincing evidence before a court can authorize the sterilization.
• The “Ashley Treatment” was conducted by physicians at Children’s Hospital, at the request of Ashley’s parents and after review by the Hospital’s Ethics Committee. There was, however, no court order sought or obtained before the sterilization portion of the “Ashley Treatment” was performed.
• FINDINGS: The sterilization portion of the “Ashley Treatment” was conducted in violation of Washington State law, resulting in violation of Ashley’s constitutional and common law rights.
o The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual’s best interests.
o Courts have also limited parental authority to consent to other types of medical interventions that are highly invasive and/or irreversible, particularly when the interest of the parent may not be identical to the interest of the child. Thus, the other aspects of the “Ashley Treatment” – surgical breast bud removal and hormone treatments – should also require independent court evaluation and sanction before being performed on any person with a developmental disability.
o The implementation of the “Ashley Treatment” also raises discrimination issues because, if not for the individual’s developmental disabilities, the interventions would not be sought. Such discrimination against individuals because of their disabilities is expressly forbidden by state and federal law.
• The violations appear to have occurred as a result of:
o a lack of policies at Children’s Hospital regarding the sterilization of minors with developmental disabilities;
o an opinion of Ashley’s parents’ counsel that no court order was required. This legal opinion was not supported by Washington law;
o reliance upon that opinion by doctors at Children’s Hospital and the mistaken belief that the opinion of Ashley’s parents’ counsel constituted a “court review;” and
o insufficient internal controls at Children’s Hospital to ensure that Ashley’s independent legal interests were protected.
• As a result of the WPAS investigation, Children’s Hospital has agreed to take the following corrective actions:
o Develop and implement a policy to prohibit sterilizations of persons with developmental disabilities without a court order. The policy will assure that all appeal periods and appeals, if any, are exhausted before any procedures are performed;
o Improve internal controls and oversight to insure that no sterilizations can take place without the necessary court order; and
o Give notice to WPAS of requested sterilization of persons with developmental disabilities so that it can continue to act as a watchdog on behalf of individuals with disabilities.
• Additionally, Children’s Hospital has also agreed to take the following additional steps to protect the rights of children with developmental disabilities for whom the “Ashley Treatment” or other growth-limiting interventions are sought:
o Develop and implement a policy to prohibit growth-limiting medical interventions on persons with developmental disabilities without a court order. The policy will ensure that all appeal periods and appeals, if any, are exhausted before any procedures are performed;
o Give notice to WPAS of requested “Ashley Treatment” and other growth-limiting interventions of persons with developmental disabilities so that it can continue to act as a watchdog on behalf of individuals with disabilities; and improve internal controls and oversight to assure that no such procedures can take place without the necessary court order. To the extent that it is medically viable, the policy will include provisions to monitor the prescriptions for high dosages of hormones that the Hospital’s pharmacy has been asked to fill; and
o Include a disability rights advocate on the Hospital’s Ethics Committee. The Committee will also bring in experts in particular relevant areas as it relates to medical care and interventions for individuals with developmental disabilities, as appropriate.
• NEXT STEPS: In order to continue advocating for the rights of people with developmental disabilities for whom sterilization or growth-limiting interventions may be contemplated, WPAS will:
o work with Children’s Hospital in ways identified in Section V of this Report and monitor the implementation of the Agreement between Children’s and WPAS;
o conduct outreach to courts and guardians ad litem to advise them of WPAS’s availability to provide technical assistance to guardians ad litem and/or representation for children with disabilities for whom a court order is being sought to perform a sterilization, the “Ashley Treatment,” or other growth-limiting medical interventions;
o provide technical assistance to other P&As and disability rights related organizations throughout the country who wish to address issues related to sterilization, the “Ashley Treatment,” or other growth-limiting interventions for children with disabilities, and conduct activities similar to those WPAS is doing in Washington State; o participate in opportunities to educate the public on legal and other issues related to sterilization, the “Ashley Treatment,” or other growth-limiting interventions for children with disabilities, from the perspective of the disability community;
o promote the availability of WPAS’s advocacy services to obtain assistive technology to facilitate mobility and ease of providing personal care where funding is required by law; and
o widely disseminate this report to various organizations and agencies in an attempt to draw attention to the need to take proactive measures to protect individuals with developmental disabilities. WPAS will also collaborate with our partners in the disability community to:
o identify and promote the best candidates who have a “disability perspective” for participation in hospital ethics committees around the state;
o conduct outreach to hospitals throughout the state to encourage them to adopt policies similar to the ones being developed for Children’s;
o develop a strategy for reaching and educating doctors who may be considering providing high doses of hormones for the purpose of growth attenuation of individuals with developmental disabilities on an outpatient basis in their offices and without the involvement of any hospital;
o create and disseminate educational materials and make presentations to train doctors, medical students, members of hospital ethics committees, judges, guardians ad litem, lawyers, law students, people with disabilities and parents of people with disabilities on legal and other issues related to sterilization, the “Ashley Treatment,” and other growth-limiting medical interventions for children with developmental disabilities from the perspective of members of the disability community;
o work with agencies involved in certification, accreditation, and licensing of hospitals and health care providers to assure that standards, criteria and requirements related to the provision of sterilization, the “Ashley Treatment,” and other growth-limiting medical interventions for children with disabilities are clear, consistent with the law, and communicated to those who need to know;
o work with health insurance companies operating in Washington State and around the country to assure that their policies for reimbursing costs of the “Ashley Treatment” and other growth-limiting medical interventions for individuals with developmental disabilities are clear, consistent with the law, and communicated to those who need to know;
o work with the disability community in Washington State and around the country to identify and advocate other ways to restrict the performance of the “Ashley Treatment” and related growth-limiting medical interventions for children with disabilities to the furthest extent possible;
o to the extent necessary, seek the means necessary to accomplish the above in a timely manner; and
o work with people on every side of the debate to join together to improve the services and supports for children with disabilities and their families.
To view the complete Investigative Report Regarding the “Ashley Treatment”, please see www.DisabilityRightsWA.org. To receive this document in an alternative format, please contact DRW Administrator Jessica McDaneld at 206-324-1521 or TTY 206-957-0728.
[ May 08, 2007, 03:00 PM: Message edited by: sndrake ]
Posted by Flaming Toad on a Stick (Member # 9302) on :
Thanks. That's very interesting.
Posted by vonk (Member # 9027) on :
quote:The Washington Supreme Court has held that a court order is required when parents seek to sterilize their minor or adult children with developmental disabilities, and that the individual must be zealously represented by a disinterested third party in an adversarial proceeding to determine whether the sterilization is in the individual’s best interests.
I'm not fluent in legalese, so could someone please explain how one could be 'zealous' and "disinterested" at the same time? And why would either be appropriate for the defendent of a mentally/physically disabled person? Why wouldn't it be preferable to have a well educated, interested and calm person making the defence? I don't see how zeal or interest really come into play.
Posted by Toretha (Member # 2233) on :
what's this adversarial proceeding going to consist of? What if the third party also thinks sterilization would be better? Who plays adversary?
Posted by romanylass (Member # 6306) on :
My guess would be a Guardian ad Litem, not related to the family but familiar with disability rights issues. (not a legal expert)
Posted by sndrake (Member # 4941) on :
Vonk - that means someone - not connected to the parents or the hospital - advocate for the child. This is done more often than you think in cases where families might have mixed motives in terms of what they want done (in Ashley's case, part of the parents' rationale that keeping her small would make their own lives better, for example.)
The specific term for this person is a guardian ad litem - their job is to advocate for the best interests of the individual (incapacitated adult or a minor).
Posted by vonk (Member # 9027) on :
Ok. The disinterested part means having no personal interst, not having no interest in the case at all. Requiring someone to be zealous still sounds weird to me.
Posted by Dagonee (Member # 5818) on :
"Zealous" is taken from the Rules of Professional Conduct governing the practice of law. Here is the relevant section of the ABA Model Rules: "As advocate, a lawyer zealously asserts the client's position under the rules of the adversary system."
It should be noted that "illegal" in this sense means that the proper procedures were not followed - literally, a denial of due process. Based on the posted information, there's no ruling that the decision made was erroneous. Just that it was made improperly.
That's not to denigrate the finding nor to defend the actual decision. Due process violations are very serious - so serious that we will exclude absolutely reliable evidence and allow a murderer to walk free in order to protect it.
The key here is the irreversibility of the "treatment." It is in such cases where process is the most important, because a mistake can't be fixed.
Elements of due process include notice and hearing. The type of hearing is largely determined by the importance of the right at stake. The right invoked here is considered amongst the most important, so the process must be extensive: the right to present evidence, to hear evidence, to cross-examine witnesses, impartial arbitrator, and legal representation are all critical.
Posted by Kasie H (Member # 2120) on :
Just thought I'd point out that the report is currently the main story on CNN.com (with the picture & headline, etc).
In possibly related (and somewhat late) news, Dr. Daniel Gunther, the man who led the surgery on Ashley, killed himself in September. Posted by Dagonee (Member # 5818) on :
From the article sndrake linked:
quote:"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of it," they wrote, adding that while they support laws protecting against involuntary sterilization, they believe the law is "too broadly based" to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley."
This attitude really annoys me. The investigative report called for a court hearing. It didn't say the procedure shouldn't have been done at all. It simply said that, before such a permanent and life-changing decision should be made, a neutral decider (a judge) should have heard evidence of the benefits and costs of this procedure before deciding if it was in her best interest.
In order to "distinguish between people who are or can become capable of decision-making and those who have a grave and unchanging medical condition such as Ashley," someone has to analyze the evidence. A court exercising the review described by the investigators can easily make such a distinction.
It's like saying that the criminal justice system should distinguish between the innocent and the guilty.
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I bet that reporter in Stephen's link has never even thought about setting foot inside a community home. Geez! I'm not a monster!![[Wink]](wink.gif)
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