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.
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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/
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.
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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.
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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?
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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.
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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.
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Really? You think it was just as likely that people would be in favor of removing a boy's sexual organs?
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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.
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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.
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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.
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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.
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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.
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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.
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.
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If the medical procedures result in greater happiness for Ashley in her life, I am all for them.
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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?
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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.
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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.
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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.
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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.
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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)
posted
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.)
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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.
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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.
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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.
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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.
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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.
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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.
Posts: 1321 | Registered: Jun 2006
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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.)
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."
Posts: 26071 | Registered: Oct 2003
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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.
Posts: 14017 | Registered: May 2000
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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.
Posts: 9866 | Registered: Apr 2002
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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.
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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.
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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.
posted
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.
Posts: 910 | Registered: May 2000
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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.
Posts: 14017 | Registered: May 2000
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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.
Posts: 13123 | Registered: Feb 2002
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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.
Posts: 8355 | Registered: Apr 2003
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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.
posted
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.
Posts: 2849 | Registered: Feb 2002
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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.
Posts: 13680 | Registered: Mar 2002
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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. (?)
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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]
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.
Posts: 4344 | Registered: Mar 2003
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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?
Posts: 14017 | Registered: May 2000
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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.
Posts: 4344 | Registered: Mar 2003
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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.
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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!
