posted
Hey, Stephen, do you read the comic "For Better or for Worse" at all? They've been running a story about one of the daughters' encounters with "special" students. I'm actually really impressed.
/off-topic
And I'm pretty much with Dag on this one. Why does he always have to post first and take all my words?
Posts: 2849 | Registered: Feb 2002
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posted
I really don't have the knowledge to argue this point, but I think at least someone should bring up that these are high-functioning autistics. In mental/developmental disorder advocacy, there's a tendency to present the very high functioning (and sometimes relatively scarce) people at least implicitly as the standard.
I get the arguments here. Identity is made up of all the parts of you. Changing any of it, especially such an integral determiner of how you see the world and yourself is not a matter of simply "curing" a defect. It's discarding the person you are for someone else. Even in a case where say a person could be confined to a wheelchair or not would likely result in very different people, both of whom could have valid, fulfilling lives. It's very hard to say what all the effects of any aspect of who a person is are going to be. Things we see from our "normal" perspective that are "deviations" almost always look totally negative.
Yeah, I get all that. Here's the thing though, if my memory is right (and it could quite possibly not be) the majority of autistics can never be self-sufficient. For many of them, autism is not a quirky, somewhat hampering way of seeing things, it's a condition that prevents them from ever interacting with the world to a point where they'd even be able to say "This is part of who I am. Don't try and cure me."
The slightly bizarre, high-functioning manic-depressive who sometimes gets a little over-impulsive may have a case for not wanting to be treated. It would change him into a different person. But he isn't going through the more typical bouts of mania of people (mny of whom, while in this manic state, will fight being treated) who are tearing their lives apart.
The same is true here (as I said, I think this is true, but I've only a passing acquaintance with the issue). Autism for many is a horrible, life-denying thing. For me, the measure comes down to whether or not the person is able and willing to take responsibility for refusing treatment. If they are competent to make that decision and they are able to live with it without extraordinary support, I can't see where I or anyone else has the right to force them to be "better". But if their condition is such that they can't responsibly make that decision or are highly reliant on others for support, I don't think that their hurt feelingsor rather the hurt feelings of other people who are high-functioning sharers of their condition) are a good enough argument against trying to cure them. (And, yeah, I don't have a clue as to how to determine whether or not someone is competent to make that type of decision and I don't ever want to be in a position where I'd have to decide.)
Of course, I find the "let's treat people like objects" philosophy of many in the ABA loathsome and think they should be made to jump through some pretty major ethical hoops before they are allowed to apply their treatments to anyone.
posted
The problem is that the entire idea of a "cure" is likely a mirage. First, without knowing how to "cure" them now, we would have to allow medical testing on patients who cannot ever provide meaningful consent. Second, any kind of physical manipulative "cure" is going to cause very bad side effects during development. Some of these will be utterly life-destroying side effects.
The process should be thought of as education, not curing. People need to learn certain skills in order to cope with the world. The vast majority of us share a basic subset represented by a high school education.
Some people can't learn certain skills. Or, they can't learn certain skills in the common way. Adjustments should be made accordingly. Either new ways to teach the skill should be found, or ways of helping the person cope without that skill (via complementary or substitute skills) should be found. Unfortunately, many people will not be able to be "self-sufficient." Recognizing that, sufficiency should be adapted to what's possible.
There are real dangers with setting that level too high or too low. But there are an awful lot of people who must face every single day with absolutely no say in what they will do or how they will be treated. Every minute of their day is controlled by someone else, and it doesn't have to be that way.
The goal should be to provide the autonomy that is possible for each person.
posted
I'm apparently nowhere near as willing to rule out bio-medical and/or more invasive treatments in this case as you are Dag. Not really looking to argue the point, I just wanted to say that I disagree with your ethical stance. I think that respectful and ethically responsible attempts to find a cure are possible.
Posts: 10177 | Registered: Apr 2001
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quote:However, in a purely genetic situation (which we're not sure autism is, BTW), you are asking the person, "If you could be exactly the same but not autistic, would you choose to be?" It's an impossible question to answer, because that person has always had autism. It has shaped their development as a person from day 1.
That's not necessarily what's being asked in a purely genetic situation. Many diseases are genetic; I’ll wager a bet and say most are. Not all are expressed upon birth. Take tandem CAG repeats within a gene. These are quite common and lead to dementia, ataxia, psychosis and the like. The combination of symptoms fit the description of Parkinson’s, Huntington’s, Alzheimer’s, etc., though not all cases of those diseases are caused by CAG repeats. The point though, is that if you were to go up to anyone and ask them if they'd like to suffer from dementia one day I'd wager every single person you would ask would say no. In this case there's a clear "before" to the disease, as there is in your diver scenario and so here the question becomes fuzzier. What if these conditions were treatable but only in a developing embryo?
As an aside, individuals with an identical stretch of mutant DNA may not express the disease to the same degree, if at all. The fact that someone has "The Disease Gene" does not mean that they will express the trait. Pinning an complex disease (more than one factor) down to purely genetic causes may well prove impossible.
Also, you cannot dismiss neonatal and prenatal transgenetics because the research in the US is currently restricted (rightly or wrongly). In the UK, for example, you are allowed to create embryos for research (though not reproductive) purposes. (Or at least you were in 2002, am I out of date?) It's by no means outside the realm of possibility that the technology will be developed elsewhere and percolate into the US. "It won’t happen here" does society a disservice. Although maybe I read that wrong, it is after 2:00.
Lastly, it should be made clear that genetic manipulation does not have to occur in embryos. There are scads of procedures out there that introduce new genes/knock out bad ones in fully-grown adults. Though I wouldn't label any as particularly successful to date, and they will likely not be stable (You'd have to take your "disease x" shot once a week, or something similar), this would then seem to be Ok by you as each individual could decide whether or not to take the treatment on their own, right?
Posts: 3243 | Registered: Apr 2002
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quote:Sure enough. It's a great reason to focus on changing the general environment to be more in sync with more individuals, though.
Well sure, but my point was that thinking life's overwhelming for people with disabilities isn't always wrong.
quote:If the modified child is raised in our culture, I think it's pretty clear that he would inaccurately estimate what life would have been like unmodified.
What if he were unmodified and speculating on what life would have been like modified? I don't have any data on that. Likely it would be off, too, but how consistently and in which direction? Don't know.
Do you have any reason why it shouldn't cut both ways equally?
sndrake:
quote:Julian finds he would have lived a good life without the modifications, although a different one. The unmodified Julian, for example, is married, has kids and is connected to the community he lives in - all qualities the modified Julian's life lacks. The unmodified Julian even seems happier - not due to blessed ignorance, but simply because he has what is, in many ways, a richer life than the "real" Julian.
I could quite easily write a story where all that is reversed, and the modified person is able to marry and have kids and connect with the community and lea a richer life as a result of the modification.
Fictional works are irrelevant.
Dag, all that stuff you've just listed is a problem in execution, not in principle. I don't pretend to have the expertise to address that, nor did I attempt to.
Posts: 2443 | Registered: Apr 2002
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quote:Well sure, but my point was that thinking life's overwhelming for people with disabilities isn't always wrong.
Well sure. But we are biased to assume that it would be -- doesn't mean the assumption is always wrong, but does mean it usually isn't an accurate reflection of how people experience it.
quote:Do you have any reason why it shouldn't cut both ways equally?
I just want to be clear here. You are asking me if I have any reason to suspect that people with an identified disability would systematically tend to overestimate how happy they would be without a disability? Or do you mean tend to underestimate how happy they would be without a disability?
(What does "cut both ways equally" mean to you? I need the question unpacked a bit before I can answer. Thanks!)
Posts: 2919 | Registered: Aug 2004
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posted
I do not have time to go into it, but suffice it to say that both BtL and MrSquicky have extended my position beyond it's desired reach.
My comments were directly targeted at genetic testing and/or embryonic manipulation, with an implied side of disgust for the more radical behaviorist techniques and a stated skepticism that a phsyiological cure can ever be ethically developed.
The underlying ethical point is that imposition of external valuation methods on the disabled is a deeply rooted and still acceptable form of prejudice, and that the way we speak of assisting those with these disorders entrenches this attitude more deeply into out collective consciousness.
Certainly, none of my positions contain any kind of geographical limitation. If it's wrong to do it here, it's wrong to do it elsewhere.
posted
I don't have any time for comments either. Hitting the road within the next hour - on our way to Rochester.
This thread will probably be pushed somewhere way back by the time I log on again, let alone am really free to post. Not a problem, really. The "intellectual exercise" approach to real-life problems and dilemmas is way overdone, IMO.
ae: the part about the Star Trek book was just following another line that someone else posted.
I'm glad you feel fiction is irrelevant.
Remember that when someone brings up the play/film "Whose Life is it Anyway?" as justification for euthanasia.
And remember that if discussions come up in coming weeks about two highly praised current films that feature the killing of disabled characters as acts of compassion. Could be that this is the year that "killing cripples" is a path to the Oscars.
MOre later. Way later. Gotta go.
Posts: 4344 | Registered: Mar 2003
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posted
No, it means that you hope for the best, and work for a cure for those types of autism that are very disabling (edit: and, of course, for those people who want to be cured), but prepare for the worst and help the person and society accept the person for who they are. One does not preclude the other.
quote:Well sure. But we are biased to assume that it would be -- doesn't mean the assumption is always wrong, but does mean it usually isn't an accurate reflection of how people experience it.
Fair enough.
quote:I just want to be clear here. You are asking me if I have any reason to suspect that people with an identified disability would systematically tend to overestimate how happy they would be without a disability? Or do you mean tend to underestimate how happy they would be without a disability?
By 'cuts both both ways', I mean that the disabled person's conception of life without the disability would, like the non-disabled person's conception of life with the disability, be inaccurate, and we have no reason to believe that either would be more inaccurate than the other.
sndrake:
quote:the part about the Star Trek book was just following another line that someone else posted.
Oh, okay.
quote:I'm glad you feel fiction is irrelevant.
Remember that when someone brings up the play/film "Whose Life is it Anyway?" as justification for euthanasia.
You know what? I will. Fiction is irrelevant, whether it's pushing a message I sympathise with or not.
Posts: 2443 | Registered: Apr 2002
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posted
I haven't had time to read the whole discussion, but I thought I'd throw out a "bone"...
What about genetic diseases that are more "serious"?
I worked as an assistant in a clinical genetics clinic and the -majority- of the diseases I had contact with led to death within a year of being born. And if they child did not die by then, they were in horrible horrible shape. Yes they aren't common, but these do bring in another thought line to genetic testing and "curing".
If I was pregnant, knew when my baby was born it would live in horrible discomfort and would die in 4 weeks and I had the choice of "curing" whatever was wrong with him/her there is no doubt in my mind that I would. I think anybody would. However, if I had a downsyndrome child and knew in advance, I wouldn't do anything. Once born I'd help them out as much as I could just like any other child.
I think it all has to do with the degree of the problem. But society won't read things that way. People will want to "cure" down syndrome, autism, etc. and we will be poorer for it.
-But- when weighing out the pros and cons, I'd say I'm all for genetic "curing". I think it's important to "cure" the more serious diseases and if autism and down syndrome are "cured" in the process and there are no more people around with it, we will be a much much poorer society for it. But we will be much richer in the lives we saved too.
Posts: 944 | Registered: Jun 2001
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posted
Personally, if I could fix any kind of defect in my child, I would. You can talk all you want about diversity and better understanding, but my maternal instict says I should help my child be as healthy and happy as possible. I just couldn't be objective about a decision like that.
Posts: 2283 | Registered: Dec 2003
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posted
I want to make something clear. I'm not against the idea of a "cure" per se.
The whole reason I entered this thread was because of the valuation issue.
This leaped to genetic testing when the discussion turned to others "deserving to be born."
My opposition to genetic selection is absolute and undying. The use of it implicates the valuation issue and, very likely, my pro-life beliefs. But even without my pro-life beliefs, the valuation issue is compelling to me.
I also expressed skepticism that a genetic "cure" could ever be developed ethically. I don't say it's impossible, but I do think it's very unlikely.
In cases where a person can choose to undergo the cure, I would have no problem with them so choosing.
In cases where no truly informed choice can be made, I'm uncomfortable but uncommitted to either side. The reason I can safely stay that way is that we're not close to such a cure at this point, and energy is better spent ensuring the search for a cure is performed ethically.
quote:People will want to "cure" down syndrome, autism, etc. and we will be poorer for it.
How? No one's answered this question yet.
Dag:
quote:The problem is that right now, with no "cure" being available, treating it as a "defect" pigeonholes those with the condition.
This implies it wouldn't be a problem if a perfect cure were available. How so?
quote:In cases where a person can choose to undergo the cure, I would have no problem with them so choosing.
In cases where no truly informed choice can be made, I'm uncomfortable but uncommitted to either side.
Surely no truly informed choice can ever be made. An autistic person could not know what life without autism is really like at the time that he makes the choice.
By the by, I totally get your stand on the issue of the actual research involved. If you're pro-life, it makes perfect sense.
Posts: 2443 | Registered: Apr 2002
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Differences in people make the world "richer". Blond hair, brown hair, blind, autistic. Each of these things bring differences which are terrific.
A blind person views the world different then I do. I was talking to a blind gentlemen at the bus stop the other day he mentioned how he loved Christmas because he could hear it where Easter he couldn't- I never thought about that.
Diversity is important in life. Each person is formed by their different experiences and different "lots" in life. Without diversity life is poorer because we loose these view points and contributions.
Posts: 944 | Registered: Jun 2001
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posted
What truly is worth? And in the end, isn't it a completely arbitrary judgement call?
I've seen where an autistic child brought a parenting couple together, reinvesting their lives into creating a happy and healthy environment for their child, where there might have been divorce otherwise.
I've also seen some "normal" folks who would be easily described as worthless.
As a society, we make every step possible to keep from having to kill a convicted murderer, no matter how unrepentant that person may be, no matter how un-reformable that person is. Charles Manson, for example. But the same society allows and sometimes coerces parents into aborting a child because the infant will be autistic or have some other "malady."
Hospitals and insurance companies advise and coerce people into having "living wills" so that "they won't be a burden on their loved ones".
What have we lost, what have we lost>?
Posts: 472 | Registered: Aug 2004
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posted
I had a wonderful thought about curing genetic disorders and also about autism but I forgot it. Mostly I was thinking about curing stuff like Sickle cell or Cystic Fibrosis if they are a hinderance, but is Autism in all cases like that? Are, and I might have said this before, the problems with autism more problems with the outside society? With compassionless people who tease and hurt a person for being autistic? Shouldn't that be cured?
Once I saw an episode of Sally with all these kids that kept being teased every day and I couldn't understand why Sally thought that those kids needed a makeover. There was nothing wrong with them. There's something wrong with people who tease a person just for having the wrong kind of clothes or not being into certain movies or music. This is a problem that needs to be addressed as well as a person's individual problems..
Posts: 9942 | Registered: Mar 2003
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quote:This implies it wouldn't be a problem if a perfect cure were available. How so?
It does seem to imply that, but it wasn’t meant that way. I meant that with no “cure” being available, the only thing calling it a “defect” can do is label those with the condition as “defective.” The inclusion of the present cure status was meant to underscore that such a label would be permanent. Clearly, I did not get that point across.
quote:Surely no truly informed choice can ever be made. An autistic person could not know what life without autism is really like at the time that he makes the choice.
True, but a choice can be truly informed if the areas of unknown are clearly delineated and the best available theories (including frank admission of the unproven assumptions they rely on) concerning those areas are described. Certainly, no one can understand every implication of any choice they make, and I don’t think such certainty is required.
Differences in people make the world "richer". Blond hair, brown hair, blind, autistic. Each of these things bring differences which are terrific.
You know what? I think if everyone in the world was white and blonde and blue-eyed, human experience would not really be much poorer. People have inherent individuality; for myself I don't find I need to seek out someone whose primary language isn't English and didn't grow up in Singapore and isn't Chinese and didn't go to school etc. to find someone intriguingly and surprisingly different from me. People will be people. The worry that if we keep on losing discrete cultural groups the human experience will become somehow impoverished is a paper tiger.
quote:A blind person views the world different then I do. I was talking to a blind gentlemen at the bus stop the other day he mentioned how he loved Christmas because he could hear it where Easter he couldn't- I never thought about that.
I don't think it's worth having blindness in the world so that we can have neat little thought nuggets like this.
quote:Diversity is important in life. Each person is formed by their different experiences and different "lots" in life. Without diversity life is poorer because we loose these view points and contributions.
'Life is poorer'--what does that mean? What is the real impact of these viewpoints? What exactly is being contributed to?
Lost Ashes: Don't you think this topic is loaded enough already without you shoehorning in all your other pushbutton issues?
Dag:
quote:It does seem to imply that, but it wasn’t meant that way. I meant that with no “cure” being available, the only thing calling it a “defect” can do is label those with the condition as “defective.” The inclusion of the present cure status was meant to underscore that such a label would be permanent.
This is an argument from consequences. It doesn't hold water: yeah, that's the implication if autism is a defect, but what's that got to do with whether or not it actually is?
By the by, is, say, blindess a defect?
quote:True, but a choice can be truly informed if the areas of unknown are clearly delineated and the best available theories (including frank admission of the unproven assumptions they rely on) concerning those areas are described. Certainly, no one can understand every implication of any choice they make, and I don’t think such certainty is required.
None of this is relevant. No amount of theorising will allow an autistic person to udnerstand, in a real sense, what life would be like without autism, or allow a non-autistic person to understand what life with it would be like.
Posts: 2443 | Registered: Apr 2002
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posted
I think a child has to stop using a pacifier if it is messing up their teeth. If there is an Autism/Asperger's gene, my family has it. But I'm still open to the possibility that it could be linked to abstaining from and bingeing on chocolate in bouts during pregnancy. But the likelihood that it is a genetic tendency aggravated by stress during early childhood seems the most likely to me.
By the way, I did have two siblings who still sucked their thumbs whenever possible through the third grade or so. The various "ticks" are called "stimming", short for stimulation, I guess. One of my children does so called "hand flapping". I'd like to help the child transmute that into something that isn't quite so strange looking. Though I know an adult throat clearer and that's quite off-putting as well. I don't know. Is my desire for her to pass as normal a selfish desire to see my genes propogated at the expense of the gene pool?
On a related issue, I have a friend who was very relieved to finally get her children officially diagnosed with Asperger's. She was advocating the benefits that come with classroom dispensations for people who are "classified". I don't really want my child to be labelled in that way, though, at least not while she appears to be doing okay in school.
I don't think the disorder is a part of identity, I guess. Her children have more energetic, outgoing personalities and that makes their symptoms very disruptive. By because my daughter is an introvert, she is less disruptive than an average child.
On the extreme end, I don't think my son's heart disorder that killed him was just part of his identity. It was what killed him. If someone is denied the opportunity to reproduce because of their disorder, I'd say this is pretty serious also. I'm not saying they don't deserve to live, but I'll be honest that I would change it if I could.
But I also can accept that this is the way they are. Saying that wishing a baby were a boy and wishing they aren't paralyzed is the same is slippery slope logic that I'm surprised to see coming from some of the sources it is. Reminds me of that article that said spanking a child was the same as cutting off someone's ear.
Posts: 666 | Registered: Dec 2003
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quote:This is an argument from consequences. It doesn't hold water: yeah, that's the implication if autism is a defect, but what's that got to do with whether or not it actually is?
By the by, is, say, blindess a defect?
It's not an argument, it's a statement of the consequences. People can't be defective. They are not parts for some faceless machine. They are autonomous people whose purpose, value, and worth are unrelated to what they can accomplish.
Blindness is not a defect in the person. At most you can say a person's vision is defective. There is a difference.
quote:None of this is relevant. No amount of theorising will allow an autistic person to udnerstand, in a real sense, what life would be like without autism, or allow a non-autistic person to understand what life with it would be like.
Of course, I didn't make understanding, in a real sense, a condition of treatment, did I?
quote:Saying that wishing a baby were a boy and wishing they aren't paralyzed is the same is slippery slope logic that I'm surprised to see coming from some of the sources it is.
It's not coming from any source on this thread, at least any I saw on my reread of it. Perhaps you are referring to this quote by me in an earlier post:
quote:A dad with three daughters who expresses the wish that the fourth child already on the way is a boy is at the starting point of a chain of reasoning that leads to sex-selection abortions in China. The harm in the former is mitigated by the dad being happy when the fourth daughter is born and loving her as much as he would love a son.
The problems really begin when that desire is acted upon. It moves such desires from the realm of mere human foible to active assertion of autonomy over the personhood of another.
This is very different the way you characterized it, with a clear demarcation point of where the harm begins. No slippery slope logic.
Dagonee Edit: I saw the post you might be referring to on a reread. I'll leave this here as a further explanation of what I meant.
quote:People can't be defective. They are not parts for some faceless machine. They are autonomous people whose purpose, value, and worth are unrelated to what they can accomplish.
Blindness is not a defect in the person. At most you can say a person's vision is defective. There is a difference.
Yes, of course there is a difference. You are the one who implied that there is not: 'the only thing calling it a “defect” can do is label those with the condition as “defective.”' I agree that having a defect does not make the person as a whole defective, and that is why I do not have a problem calling autism a defect.
quote:Of course, I didn't make understanding, in a real sense, a condition of treatment, did I?
Fair enough, but what, then, makes your 'truly informed choice' meaningful?
Posts: 2443 | Registered: Apr 2002
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quote:Yes, of course there is a difference. You are the one who implied that there is not: 'the only thing calling it a “defect” can do is label those with the condition as “defective.”' I agree that having a defect does not make the person as a whole defective, and that is why I do not have a problem calling autism a defect.
Let me be clearer. Blindness is not a defect of the person. It is a defect of the person's visual sense. It might seem like meaningless semantics, but that is very different than calling it a "defect in my child," which is the comment this was originally in response too. My overall point is that the way we look at and speak of these things matters to how people are treated and valued.
If there's one post that sums up my views on this matter best, it's "Calling the lack of a cure 'the worst' is pretty much what I'm in opposition to."
quote:Fair enough, but what, then, makes your 'truly informed choice' meaningful?
Stephen can give you the horror stories better than I about things done to "fix" people with disabilities, about which parents or patients are pretty much deceived about on a consistent basis. The deceptions include the chance of problems, how "bad" it is to live with the condition, and how much improvement there will be.
Often it's not intentional deception so much as an application of the same underlying assumptions about quality of life and human worth that I've been speaking about. This is all tied together, and springs from the same root cause: The implicit assumption that life with a disability is "the worst," that death might be better, that they're not really "living," that they have a defect.
A truly informed choice will be meaningful when all this information, plus the lack of information we have, is given to the patient/guardian accurately.
posted
I'm curious. Does ABA and things like Skin-shock treatment actually work, or do they instead just teach a child to mask their autistic tendencies?
Posts: 9942 | Registered: Mar 2003
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posted
The paradigm case for their use is self-destructive behavior. It's the one paraded out whenever the methods are advocated. In these situations, stopping the behavior is considered all important, since otherwise he endangers himself.
Studies have shown that "learning" from the technique is often short-lived. In addition, the lack of control, humiliation, and suffering often brings on new types of issues.
The techniques do nothing to deal with the root of the problem; they pretty much are based on the theory that the reason for problematic behavior doesn't matter.
posted
But there are therapeutic routes other than ABA. I'm not a real expert on it, though I'd like to learn more, It's really frustrating to just try and learn more on something that impacts your life when every source is so polarized for what seems to be purely philosophical reasons. Just because I want autistic symptoms to be minimized in my child doesn't mean I think shock treatment is a good idea.
I do think special education has been wonderful for my relative who is more clearly autistic. But I think that if a child is in a mainstream classroom, disability dispensations from a teacher not trained in special ed may not be helpful. I guess I have no way to back this prejudice up.
I bring up slippery slope because we are not talking about autism all the time on this thread, so obviously there is being some attempt to analogize between things that are not autism. I just wanted to point out that as much as it can be compared to a trivial thing, it could be compared to a grave thing.
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