quote:BOICEVILLE, N.Y. - Jack Thomas, a 10th grader at a school for autistic teenagers and an expert on the nation's roadways, tore himself away from his satellite map one recent recess period to critique a television program about the search for a cure for autism.
"We don't have a disease," said Jack, echoing the opinion of the other 15 boys at the experimental Aspie school here in the Catskills. "So we can't be 'cured.' This is just the way we are."
From behind his GameBoy, Justin Mulvaney, another 10th grader, objected to the program's description of people "suffering" from Asperger's syndrome, the form of autism he has.
"People don't suffer from Asperger's," Justin said. "They suffer because they're depressed from being left out and beat up all the time."
Having said what I did about the "airing" of opposing views, I think the one voiced by the students and adults in the article are very underreported. "Cure" is the dominant story about autism, for many reasons.
On a side note, I used to know one of the people quoted in the article. As a matter of fact, I was involved in the beginnings of this particular discussion, as it pertained to what "informed consent" should mean for families asked to participate in genetic studies of autism.:
quote:The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness. Some worry that in addition to troublesome interventions, the ultimate cure will be a genetic test to prevent autistic children from being born.
That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation. The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.
"What they're saying is their goal is to create a world that has no people like us in it," said Jim Sinclair, who did not speak until he was 12 and whose 1993 essay "Don't Mourn for Us" serves as a touchstone for a fledgling movement.
Posted by Belle (Member # 2314) on :
I know a family whose son has Asberger's - they love and accept their son for his differences, and so do I. He's a delightful kid and I adore talking to him. He annoys some people, because he is constantly asking questions - he wants to know everything he can know, but I find him engaging, intelligent, and one of the most kind-hearted kids I've ever been around.
I wouldn't think he has anything that needs "curing"
Posted by Dagonee (Member # 5818) on :
quote:That would be a loss, they say, not just for social tolerance but because autistics, with their obsessive attention to detail and eccentric perspective, can provide valuable insight and innovation. The neurologist Oliver Sacks, for instance, contends that Henry Cavendish, the 18th-century chemist who discovered hydrogen, was most likely autistic.
This sentence scares me a little. Their usefulness to society is NOT a determinant in whether they deserve to be born. At best it encourages people to "tolerate" autistic persons, but not for their inherent worth as people.
I call it Rudolph syndrome.
Dagonee
Posted by sndrake (Member # 4941) on :
quote:This sentence scares me a little. Their usefulness to society is NOT a determinant in whether they deserve to be born. At best it encourages people to "tolerate" autistic persons, but not for their inherent worth as people.
I call it Rudolph syndrome.
Good name. I'll be using it in the future.
I steal from the best.
I agree with you, Dag. It's a common trap that disability advocates fall into. I spent 12-13 years working with people with various developmental disabilities. Many of them will never be "productive" and I don't think one's value should hinge on that.
My worst nightmares involve the marriage of capitalist extremism and Singer utilitarianism. Not a pretty picture.
Posted by Synesthesia (Member # 4774) on :
That was a fascinating article! Someone on LJ posted it yesterday. The way I see it, I think the larger society needs to adapt itself to people who are different, while at the same time, a person does need to learn certain social skills to get along in society like keeping clean, not hitting people if they are angry. But, I don't agree with what little I know about ABA. Can't they use a child's obsessions as a way of teaching them and helping them engage with the larger world? I know my obsession with music is useful when it comes to meeting people. There has to be some sort of balance, but it seems wrong to just try to completely cut out autistic traits out of a person if this is how they are.
Posted by Dagonee (Member # 5818) on :
Hey Synesthesia, I don't think I ever told you this, but a thread you posted way back on autism forced me to crystallize my thinking on the subject.
Not so much that it changed by mind on anything, but it made me specifically apply already deeply held principles to the situation and think about what that meant.
quote:Good name. I'll be using it in the future.
I steal from the best.
*preserves thread for later proof*
Dagonee
[ December 20, 2004, 01:18 PM: Message edited by: Dagonee ]
Posted by Synesthesia (Member # 4774) on :
Interesting... Elaborate...
Autism is such an interesting subject, a character of mine is autistic and I feel like I am on the borderline of having autism, like i have mild Asperger's or something. It would explain a lot. So I stumbled on to all sorts of sites and felt that it's not really something that should be cured... just... adapted to a bit, it depends. I have to do more research about it, I guess.
Posted by sndrake (Member # 4941) on :
quote:But, I don't agree with what little I know about ABA. Can't they use a child's obsessions as a way of teaching them and helping them engage with the larger world? I know my obsession with music is useful when it comes to meeting people.
Syn,
traditionally, Applied Behavior Analysts have tended to discourage obsessive behavior. Or, at best, to use the "obsession" as a reinforcer (good way to kill the joy, eh?).
In its bleakest sense, ABA seeks to eliminate those behaviors that are odd or abnormal. And to instill "normal" ones in their place - often through repetetive drill.
There are some people who use some of the techniques of Applied Behavioral Analysis - in fact, I think we all do in our dealings with others to some extent or other. But most of us don't rely on it as the dominant tool in dealing with others, especially our children.
If you look at the histories of of autistic people who have "made it," most of them were allowed to explore their "obsessions," which became springboards to wider areas of knowledge. Temple Grandin is one person who developed that way.
Posted by Dagonee (Member # 5818) on :
It was a thread where you got mad about getting autistic children to stop shaking or rocking or the other behaviors they engage in.
I'd just never thought about it much before. If I'd been asked on the street without thinking about it much, I'd probably have thought it was a good idea to "help them stop."
Reading about it the way you put it, I flipped the whole situation around in my head.
Dagonee
Posted by ae (Member # 3291) on :
Dag:
quote:This sentence scares me a little. Their usefulness to society is NOT a determinant in whether they deserve to be born.
If they weren't born, other children would be who also deserve to be born.
Posted by Belle (Member # 2314) on :
quote:If they weren't born, other children would be who also deserve to be born.
Please elaborate. I don't think I get what your saying.
Posted by AvidReader (Member # 6007) on :
I'm always a little curious about behaviors as communication arguments. On the one hand, behavior can give us an insight into what someone is thinking. On the other, writers have to spend pages telling us what a character is thinking in order for their behaviors to make sense.
My neice didn't talk until she was about three because all she had to do was grunt and point at what she wanted and her parents gave it to her. That's fine for them, but what happens when someone else watches your kid? Behavior is good, but words are better.
For adults, it's vital. Behavior doesn't let you call the utilities company to report a problem or go to the bank and get a loan. Yeah, society should be able to shrug off a little hand waving or lack of humor, but some skills are vital.
quote: If an autistic child who screams every time he is taken to the supermarket is trained not to, for example, he may still be experiencing pain from the fluorescent lights and crush of strangers.
But if the kid wants to eat, he better learn how to go to the store and not get thrown out for disturbing the other shoppers. Yeah, let's teach him how to go on a day when it won't be busy. Or to wear sunglasses if the light bugs him. But he still needs to learn how to go to the store.
Posted by sndrake (Member # 4941) on :
I think I get what ae is saying - it's the old "replaceability" principle regarding disability-related abortion and infanticide that Peter Singer promotes. If one "damaged" life is prevented, it enables the parents to have a go at starting another - "undamaged" life.
It's basic stuff, and it really is a principle that drives the prenatal testing business and all that's associated with it.
None of that negates the right for people of a group potentially targetted for elimination to voice their complaints about it. And to make sure it gets called what it is, instead of buried under some other kind of blurry terminology.
[ December 20, 2004, 02:04 PM: Message edited by: sndrake ]
Posted by KarlEd (Member # 571) on :
I, too, love the "Rudolph Syndrome" comment. I'm gonna use it, too. If anyone asks, I'll tell them to make sure they include Dagonee in the footnotes when the phrase makes the OED.
Anyone ever read "Son of the Circus"? It's a pretty good book overall, but one tiny plot thread is about the main character, a doctor, who has a sort of hobby trying to find a "cure" for dwarfism. At one point one of his dwarf patients asks him why he hates dwarfs. He is shocked that someone would have that impression and asks why his patient would think that. The patient replies that he is working to eliminate them, basically exterminate them. To that dwarf, at least, dwarfism wasn't a disability. It was part of his identity. I can understand the autism arguement in the same light.
Posted by Sara Sasse (Member # 6804) on :
How insidious is the very narrow determination of what is acceptable, worthy, worthwhile, and desirable in a life.
And once the habit of mischaracterizing lives to fit a neat distinction like this becomes entrenched, how difficult it is to shed light on a problem.
The argument is always made or broken in the first assumptions.
[ December 20, 2004, 02:11 PM: Message edited by: Sara Sasse ]
Posted by Dagonee (Member # 5818) on :
quote:If they weren't born, other children would be who also deserve to be born.
First, this isn't necessarily true.
Second, the scenario we're discussing is genetic testing. There are three viable options here:
1. The mother and father get tested before conception and decide not to mate if the chance of an autistic child is too high.
2. The mother and father produce embryos in-vitro, which are then tested for autism gene markers. Only ones without autism gene markers will be implanted.
3. The mother and father conceive and amniocentesis is performed. The child is aborted if it demonstrates genetic markers for autism.
From my perspective, the second two are morally equivalent to killing a child.
Even without bringing up the abortion issue, it still demonstrates a dysfunctional method for valuing human life.
Dagonee
Posted by AvidReader (Member # 6007) on :
Oh, I think I saw that on Star Trek. Jordi saved a planet that would never have let a blind kid be born. It's still the Rudolph Syndrome, but at least it shows people why they shouldn't dismiss someone who isn't like them.
Posted by Dagonee (Member # 5818) on :
Synth, Sara's comment on the difficulty of shedding light on the problem highlights how your thread affected me. The analysis I just gave on genetic testing affecting the valuation of life was something I could have written off the top of my head years ago. Extending that type of reasoning to behavioral therapy was something I'd never thought of. I hadn't shed the light of some very core principles on that real-world situation.
Now, I have never been in a position where I have had to have reliable moral conclusions on such things; I think I would have arrived in the same place if it ever came up. But you shed some light for me.
Dagonee
Posted by KarlEd (Member # 571) on :
There are those like me who dislike the implied assumptions of the nature/nurture arguements surrounding homosexuality for similar reasons. I hope they never find a "gay gene" because the next logical step for some people would be to screen it out of the population. I think that would ultimately make the world a darker and drearier place.
Posted by ae (Member # 3291) on :
sndrake:
quote:I think I get what ae is saying - it's the old "replaceability" principle regarding disability-related abortion and infanticide that Peter Singer promotes. If one "damaged" life is prevented, it enables the parents to have a go at starting another - "undamaged" life.
That's kind of but not exactly it. I'm saying that there will always be children who don't get to be born. There's something unpleasant about deciding who they should be based on genetics, but that doesn't change the essential thing: millions upon millions of potential wonderful human beings will, unfairly, never get to fulfill that potential.
Now if you want to talk about the whole is-it-murder-or-not, or does-a-disability-justify-it-or-not issue, that's a whole different thing, and probably more defensible.
quote:None of that negates the right for people of a group potentially targetted for elimination to voice their complaints about it. And to make sure it gets called what it is, instead of buried under some other kind of blurry terminology.
What if in some sf-like scenario this could be done by pre-natal genetic modification? You would have the elimination of the group without the killing of individuals. Would that change things? Who precisely would be being harmed then?
Posted by Dagonee (Member # 5818) on :
There was a thread posted on the "sprituality gene" recently. If a way could be found to modify children in the womb to have that gene, would you be in favor of it?
Dagonee
Posted by dabbler (Member # 6443) on :
Re: geordi and saving the planet that never would have let him be born... Star Trek Next Gen addressed an amazing number of moral issues in their episodes. Impressive and insightful series.
Posted by ae (Member # 3291) on :
Dag:
quote:First, this isn't necessarily true.
Conceded.
quote:Second, the scenario we're discussing is genetic testing. There are three viable options here:
1. The mother and father get tested before conception and decide not to mate if the chance of an autistic child is too high.
2. The mother and father produce embryos in-vitro, which are then tested for autism gene markers. Only ones without autism gene markers will be implanted.
3. The mother and father conceive and amniocentesis is performed. The child is aborted if it demonstrates genetic markers for autism.
From my perspective, the second two are morally equivalent to killing a child.
With regard to number two, your common or garden in vitro fertilisation is, AFAIK, no different in that respect.
quote:Even without bringing up the abortion issue, it still demonstrates a dysfunctional method for valuing human life.
Even number one? Why? Can't a couple decide that they couldn't deal with bringing up such a child and/or couldn't give it the care it would deserve? If this sounds dysfunctional, what about people who decide not to reproduce for more usual reasons? Are they even more dysfunctional? Is anyone who decides not to reproduce dysfunctional?
Posted by ae (Member # 3291) on :
Dag:
quote:There was a thread posted on the "sprituality gene" recently. If a way could be found to modify children in the womb to have that gene, would you be in favor of it?
For Random Hypothetical Child X, sure. He'll probably be happier for it.
However, I see little reason for anyone to actually do it to their own child. A theist and an atheist would each have their own problems with it. I know I wouldn't do it.
I'm not sure how this changes anything.
Posted by Dagonee (Member # 5818) on :
quote:With regard to number two, your common or garden in vitro fertilisation is, AFAIK, no different in that respect.
Yes, that's true. Doesn't change my opinion on it, though.
quote:Even number one? Why? Can't a couple decide that they couldn't deal with bringing up such a child and/or couldn't give it the care it would deserve? If this sounds dysfunctional, what about people who decide not to reproduce for more usual reasons? Are they even more dysfunctional? Is anyone who decides not to reproduce dysfunctional?
Not at all. But the mere fact of saying "I would prefer a baby with trait X" is an implicit assumption that the baby is being valued based on the parents' wishes, not the baby's inherent worth as a human being.
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. (And I mean something very different by that than parental authority.)
Dagonee
Posted by Belle (Member # 2314) on :
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.
You know, nobody believed me when I said that I would welcome another girl as our third child just as enthusiastically as a boy. But it was true - I loved having girls. I got lots of "yeah, right, everybody says that" with the implication being people didn't really mean it.
I didn't have any desire to have a child to "carry on the family name" or any such nonsense, it's not as if the Wards are going to become extinct anytime soon. I really didn't care if it was a boy or girl.
then I found out it was twins, and one of each at that.
This topic makes me sad to think about. My son has a genetic tissue disorder. I can't imagine not having him in favor of a more "perfect" child. *shakes head*
Posted by sndrake (Member # 4941) on :
quote: What if in some sf-like scenario this could be done by pre-natal genetic modification? You would have the elimination of the group without the killing of individuals. Would that change things? Who precisely would be being harmed then?
Same result in the end. You'd have to ask the people in the article. I suspect they'd want you to look at the path as well as the destination.
The first wave of modification would start as experimental modification, putting the fetus at some amount of risk, at least in those early stages. The justification for engaging in the experimentation would be that risk of death or harm is preferable to the disability itself.
It's played out before, as in the case with risky in-utero spinal closures in fetuses with neural tube defect (spina bifida).
In the end, the question isn't so much about the individual, as about the greater culture. What is lost - ever - when a distinct group vanishes for whatever reason?
But I'm in definite sync with the people in the article on one thing. The philosophical arguments are meaningless to those whose existence and worth are on the cutting edge of health and public policy. Not that I know for sure they'd say that, but things that are close and personal don't tend to be seen as academic or philosophic debating issues.
Posted by Synesthesia (Member # 4774) on :
How cool *lights up* What exactly does ABA consist of? It seems cruel to make a person sit for hours upon end doing something dull, boring and repetative. Why not just like them do their own thing for the most part as long as it's not something revolting? And what is normal behaviour anyway? Rocking feelings rather good and is probably comforting to the person. Why take away what is comforting to someone even if it seems mildly abnormal? (Reminded of some show when they wanted take away these kid's pacifiers. I didn't understand why.)
Posted by ae (Member # 3291) on :
Dagonee:
quote:Yes, that's true. Doesn't change my opinion on it, though.
Fair enough. Realise it does make your 'it's murder' counterargument less useful.
quote:Not at all. But the mere fact of saying "I would prefer a baby with trait X" is an implicit assumption that the baby is being valued based on the parents' wishes, not the baby's inherent worth as a human being.
'I would prefer not to risk screwing up another human being for life' has the same implication. So does 'I would prefer to be a priest'.
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.
Like the dad who hopes his baby who's on the way won't be born a paralytic?
quote: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.
In my hypothetical sfnal future, you would be exercising the same authority by choosing not to change a thing. If you chose not to know what the baby would be like in the first place, you would merely be abdicating responsibility.
Posted by Sara Sasse (Member # 6804) on :
One of the things that makes me terrifically uneasy in this area is how consistently people who are in a situation of disability evaluate it differently than those who are not (or even differently than they would have before). Persons with disability, parent of persons with disability ... not all, for sure, but pretty consistently so for most.
Makes hypothetical discussions hard to evaluate, as I'm not sure how accurate those projections of likely experience are.
[ December 20, 2004, 03:03 PM: Message edited by: Sara Sasse ]
Posted by ae (Member # 3291) on :
Belle:
quote:This topic makes me sad to think about. My son has a genetic tissue disorder. I can't imagine not having him in favor of a more "perfect" child. *shakes head*
If you had by sheer chance had that more perfect child, you would not be able to imagine not having him, either.
Of course the sort of choice presented here sounds monstrous to people who have children already (not that people who don't might not also find it monstrous). How can a flesh and blood child who's here today compete with a might-have-been, especially one saddled with all the dystopic baggage of genetic perfection or even just improvement?
sndrake:
quote:Same result in the end. You'd have to ask the people in the article. I suspect they'd want you to look at the path as well as the destination.
I am trying to clarify your objection to this. Is it the loss of life or the loss of a way of life?
quote:In the end, the question isn't so much about the individual, as about the greater culture. What is lost - ever - when a distinct group vanishes for whatever reason?
This sort of answers my question. Good question, though: what indeed? If we could bring back the Incans, should we? If we could conjure a whole new group out of the ether, should we? What is the difference between the loss from the world of what exists and the absence from it of what has never existed? Is it the fact that we can feel something concrete for the former but not the latter?
Posted by ae (Member # 3291) on :
Sara Sasse:
quote:Makes hypothetical discussions hard to evaluate, as I'm not sure how accurate those projections of likely experience are.
I'm not sure where that comes into this particular discussion.
Posted by Synesthesia (Member # 4774) on :
What do they mean by "perfect child?" I don't think there is such a thing. Just the concept of such a thing is very harmful and it should just be eliminated.
Posted by Belle (Member # 2314) on :
ae, what makes me uncomfortable is the automatic assumption that the child born without the genetic tissue disorder is in some way superior to the one born with it.
Who is to say that the child with the disorder may be a more compassionate, caring person that the one without it? Who is to say that growing up with the experiences of not being able to play contact sports, struggling with everyday tasks other kids find easy, won't teach that child something very valuable, that serves him well later in life.
I for one don't believe that having everything go your way in your life makes for better people.
Edit: make that superior, not inferior
[ December 20, 2004, 03:15 PM: Message edited by: Belle ]
Posted by sndrake (Member # 4941) on :
Overlooked this by Avidreader:
quote:But if the kid wants to eat, he better learn how to go to the store and not get thrown out for disturbing the other shoppers. Yeah, let's teach him how to go on a day when it won't be busy. Or to wear sunglasses if the light bugs him. But he still needs to learn how to go to the store.
Personally, I think that's a really valid point and gets to the complexity of the issues involved. And I know that at least some of the self-advocates would agree (I don't know them all, and have limited contact with that community these days, although I renewed some contacts during the "United States of Leland" fiasco.).
At least part of the disagreement is how you get to that end - is it really necessary to spend hours and hours of behavioral drills to find a way that kids like the one you describe can visit a store safely - safe for both themselves and others around them?
Posted by ae (Member # 3291) on :
Syn: Yes, I'll just get out my Anti-Concept gun.
I do agree, though, and it should be said that I don't see anyone on this thread using the term who isn't categorically against this sort of fiddling about, and using the term as a sort of mild straw man (implication: proponents think some sort of ubermensch exists). Well, there was me, but I lifted it from Belle.
Posted by Dagonee (Member # 5818) on :
quote:I am trying to clarify your objection to this. Is it the loss of life or the loss of a way of life?
It's one thing for a quadriplegic person to wish he hadn't dove into the shallow end of the pool. People can look at an event and wish it hadn't happened very easily. There's an existence before the quadriplegia that can be compared to existence afterwards.
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.
What you are really asking is, "Do you wish you were a different person?" And that's an important distinction.
Dagonee
Posted by ae (Member # 3291) on :
Belle:
quote:what makes me uncomfortable is the automatic assumption that the child born without the genetic tissue disorder is in some way superior to the one born with it.
Superior, no. Happier, all else being equal: probably yes, this based off the simple fact that I don't think I'd be happier with a genetic tissue disorder.
quote:Who is to say that the child with the disorder may be a more compassionate, caring person that the one without it? Who is to say that growing up with the experiences of not being able to play contact sports, struggling with everyday tasks other kids find easy, won't teach that child something very valuable, that serves him well later in life.
I for one don't believe that having everything go your way in your life makes for better people.
Yes, but as need hardly be stated, it could go either way. If disability = automatic upside, we should all cripple our children at birth.
-
I realise I ought to clarify something: I don't actually think autism is necessarily a disability the same way, oh, having no legs is. Autism is tied in to personality and thought and thus a lot harder to say pro or con to. As someone without autism, I don't pretend to be able to judge. Really what triggered this all off was the 'deserve to be born' thing. I do mean all that I've said, but I don't necessarily believe this applies to autism.
Posted by ae (Member # 3291) on :
Wow, I must be prescient. I responded to your post before reading it.
Edit: Whoops, not really. Hold on a sec.
[ December 20, 2004, 03:26 PM: Message edited by: ae ]
Posted by Kwea (Member # 2199) on :
But if it is eliminated, then wouldn't that be a shame for the same reason? A perfect baby...one without physical flaw, which is what was being discussed....is what most of us were.
I would love my child no matter what flaws he was born with, but if I could prevent those genitic flaws without aborting one to try agian....how would I NOT do that?
My cousin has fairly serious autisum, and I have seen what that has done to his family. It IS a disease, and it should be cured if possible. I love Tony, and wouldn't change him now becaue he has finally learned some sort of control of his own life....but if it could have been prevented I know his mother would have jumped at the chance.
It's not that she doesn't love him - she does - but he won't even have children, or own a house, or hold a job. He will never get married and have children and a family of his own. All the things a mother and father want their children to experience, or to at leat have the CHANCE to experience, he will never have.
He will be living in a group home, in assistted liveng, for the rest of his life, living off of goverment assistance, unable to drive, hold a job for more than a year or two, make a true living.
I love him, but I can only visit him on one day of the week if I am in town.....it throws his rythem off if I visit him at all.
I love him, but it desn't make it any less sad or painful.
Kwea
Posted by Sara Sasse (Member # 6804) on :
quote:I'm not sure where that comes into this particular discussion.
You are so gentle! I will try to draw the connection.
quote:What if in some sf-like scenario this could be done by pre-natal genetic modification? You would have the elimination of the group without the killing of individuals. Would that change things? Who precisely would be being harmed then?
quote:Even number one? Why? Can't a couple decide that they couldn't deal with bringing up such a child and/or couldn't give it the care it would deserve?
quote:What is the difference between the loss from the world of what exists and the absence from it of what has never existed? Is it the fact that we can feel something concrete for the former but not the latter?
I think that it is pretty clear that we (as a culture) tend to misjudge how we would chose were we to be placed in a situation of disability, either as a parent or as a child. The data seems consistent and clear.
So, in making a claim of hypothetical choices, those choices are predicated by assumptions about the world which may well be untrue. (Namely, that X life would be difficult/overwhelming/not worth living/what have you.)
Of course, we make such choices all the time. However, when policy-wide decisions are made -- not just at the individual level -- then I think they should be based on the best evidence available. To do otherwise is to make ill-informed choices.
Offering prenatal genetic modification is in some sense "nothing new under the sun." That is, people have always had children for a reason (or reasons), and they have always made choices based on what they anticipate a life will be like. Children have been had in order to provide farm or factory income, to take care of other siblings, as bone marrow donors. Mates have been chosen for personal appearance, financial resources, "good breeding," etc. In that sense, to chose in this way is nothing more than a mechanical modification on prior systems of choice.
However, there was previously a self-correcting mechanism in the relatively high level of error in the system. Sure, nobody might want a quiet, bookish, red-haired child prone to allergies, but quiet, bookish, red-haired children prone to allergies were still being born. The background necessitated diversity made it possible for unrecognized niches to be filled. Now, though, a greater level of determinacy means less background noise, more precision, less error.
Not necessarily a bad thing. But I think it's awful hard to extrapolate whether we as a society (or whether a given family) would be happier with choices like this when we know we don't evaluate such hypothetical situations with any degree of accuracy, even when there are examples all around us.
I'm not jumping on the genetic-modification-is-by-definition-evil bandwagon. I'm just saying that evaluating potential outcomes of making such choices is going to be fraught with more error than usual.
Posted by ae (Member # 3291) on :
Dag:
quote: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.
What you are really asking is, "Do you wish you were a different person?" And that's an important distinction.
'If you could be exactly the same but not X, would you choose to be?' is always an impossible question to answer for any important, longstanding value of X. 'If you could be exactly the same but not a high school drop-out, would you choose to be?' 'If you could be exactly the same but not have lost your brother in childhood, would you choose to be?' The 'exactly the same' bit has to be thrown right out. The question is, 'If you could be not X, would you choose to be, knowing you'd be a different person?'
I do agree that this isn't a meaningful question with regard to autism, for reasons stated earlier.
Posted by ae (Member # 3291) on :
Sara Sasse:
quote:I think that it is pretty clear that we (as a culture) tend to misjudge how we would chose were we to be placed in a situation of disability, either as a parent or as a child. The data seems consistent and clear.
So, in making a claim of hypothetical choices, those choices are predicated by assumptions about the world which may well be untrue. (Namely, that X life would be difficult/overwhelming/not worth living/what have you.)
Fair enough, but two things.
1) Life may well be overwhelming for some parents, though, and I think it is reasonable for them to make this assessment for themselves. I'm sure it's also overwhelming for at least some people with disabilities. Being disabled doesn't make you Emotional Superman. Many genetically 'normal' people can be total wrecks; I don't believe being out-of-sync with most of the world helps in most cases. I may be wrong.
2) In our hypothetical magic DNA wand scenario, sure, the child, if delivered unmodified, might well reply no when asked Dag's big question. On the other hand, if the child were modified to fix it, would it be likely to wish that it had been born disabled?
Is either hypothetical more wrong or misguided than the other?
quote:Not necessarily a bad thing. But I think it's awful hard to extrapolate whether we as a society (or whether a given family) would be happier with choices like this when we know we don't evaluate such hypothetical situations with any degree of accuracy, even when there are examples all around us.
I'm not jumping on the genetic-modification-is-by-definition-evil bandwagon. I'm just saying that evaluating potential outcomes of making such choices is going to be fraught with more error than usual.
I agree, and for that reason I'm glad it pretty certainly won't happen in my lifetime, if ever (of course, I might not have kids at all, but who knows). Now when there's not much that can be done besides abortion, it's easy to leave it to chance; if magic wand DNA modification existed, however, my conscience would not allow me not to use or at least consider it.
Posted by AvidReader (Member # 6007) on :
quote: At least part of the disagreement is how you get to that end - is it really necessary to spend hours and hours of behavioral drills to find a way that kids like the one you describe can visit a store safely - safe for both themselves and others around them?
Being squeamish, I'd save that for the biggies. A kid who is going to become an adult must be taught not to hit others no matter how unpleasant it is for the child. Not just becuase hitting is bad, but because of the consequences. If some random guy hit me becuase I touched his cottage cheese, you can be sure my boyfriend would beat the crap out of him without waiting for an explanation. If a random stranger assaulted me, my first response would be to defend myself and call the cops. The person, disabled or not, would be facing drastic consequences for his actions.
Hours of drills are used by the military to break down a person and rebuild them to be a soldier. It's one thing to volunteer for that kind of treatment. I have a serious problem with doing that to a child against their wishes, unless their behavior is illegal. (Some kids need to be sent to military school so they don't end up in jail. I'm ok with that even if it is against their will.)
Silly example. Bill and Ted's Excellent Adventure. Ted's dad was threatening to send him off to military school because of his poor grades. Ted wanted to work on his music; school was boring. When Rufus made history interesting, Ted got an A. Working with Ted's interests instead of against them got the grade. I would think it would be common sense to work with a child instead of forcing them to do things your way. Guess not. Posted by Sara Sasse (Member # 6804) on :
quote:Life may well be overwhelming for some parents, though, and I think it is reasonable for them to make this assessment for themselves.
Absolutely. When the opportunity for such becomes more institutionalized and even medicalized, my level of unease increases.*
*says the woman who finds the idea of parenthood overwhelming and so will not have kids
quote:I'm sure it's also overwhelming for at least some people with disabilities. Being disabled doesn't make you Emotional Superman. Many genetically 'normal' people can be total wrecks; I don't believe being out-of-sync with most of the world helps in most cases. I may be wrong.
Sure enough. It's a great reason to focus on changing the general environment to be more in sync with more individuals, though.
quote:In our hypothetical magic DNA wand scenario, sure, the child, if delivered unmodified, might well reply no when asked Dag's big question. On the other hand, if the child were modified to fix it, would it be likely to wish that it had been born disabled?
Is either hypothetical more wrong or misguided than the other?
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.
[ December 20, 2004, 04:04 PM: Message edited by: Sara Sasse ]
Posted by sndrake (Member # 4941) on :
I don't have a lot of time, but one of the most recent STDS9 books did a really nice exploration of this.
I can't remember the exact book (It might have been in the "gamma" series), but an artifact caused Julian Bashir to live his life - for awhile, anyway - as it would have been if he hadn't had his genes tweaked.
Julian always had conflicted feelings about his original self, this helps sorts them out.
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.
[ December 20, 2004, 04:24 PM: Message edited by: sndrake ]
Posted by Synesthesia (Member # 4774) on :
What if a person is happy being autistic and doesn't want a so-called normal life? This may be a bit hard to believe for a person who cannot imagine anything other than what they want, but, what if the only thing keeping a person who is autistic from being happy is the way they are treated in school? In the work place? In their personal life? If all these things were changed, if people treated them better from the beginning, wouldn't they feel more fulfilled even if they might want to spend hours looking at a petri dish or watching old episodes of Star Trek instead of partying or dating. Everyone sees things differently, after all. Perhaps we should help give people the skills they need to survive in the larger world, while adapting to their world and their rhthms. Wouldn't thinks be more peaceful that way? But, then you do have the extreme, non-verbal people who either can't or won't speak...
What is genetic tissue disorder?
Posted by Belle (Member # 2314) on :
Syn - it's a catchall phrase for a group of many disorders that affect the collagen in a person's skin. People with it have varying degrees of severity, and different symptoms. Daniel's includes:
Skin elasticity outside the normal - skin that is "stretchy"
Hypermobile joints - what we'd usually refer to as "double-jointedness"
A tendency to scar heavily even with minor scrapes and scratches
Hypotonia (low muscle tone, though this is not always associated with the tissue disorders which leads to problems with gross and fine motor skills, in Daniel's case the fine motor skills are the big deal - he has the grasp and strength in his hand of a seven month old child - and he's 4 and a half years old)
A tendency for bone to break easily - my husband, from whom Daniel inherited this, has had over 20 broken bones in his lifetime and his condition is not as severe as Daniel's.
Posted by Synesthesia (Member # 4774) on :
I never even heard of that...
Posted by Belle (Member # 2314) on :
Here's a good resource, for the curious. Ehlers-Danlos syndrome is one of the most common and best-known of the connective tissue disorders, although the geneticist didn't think Daniel had EDS, he does have many of the symptoms.
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?
Posted by MrSquicky (Member # 1802) on :
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.
[ December 21, 2004, 12:27 AM: Message edited by: MrSquicky ]
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
Posted by MrSquicky (Member # 1802) on :
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.
Posted by Synesthesia (Member # 4774) on :
Excellent point, dag...
Posted by Bob the Lawyer (Member # 3278) on :
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?
Posted by ae (Member # 3291) on :
Sara Sasse:
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.
Posted by Sara Sasse (Member # 6804) on :
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!)
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
[ December 25, 2004, 09:29 AM: Message edited by: Dagonee ]
Posted by sndrake (Member # 4941) on :
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.
Besides, there will be other threads.
But until then...
Have a great holiday!
See ya before the year's out.
[ December 21, 2004, 09:26 AM: Message edited by: sndrake ]
Posted by sndrake (Member # 4941) on :
(just a quick note)
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.
Posted by Storm Saxon (Member # 3101) on :
I kind of agree with both Squicky and Dags.
Posted by Dagonee (Member # 5818) on :
That probably means you're either spectacularly right or spectacularly wrong. Posted by Storm Saxon (Member # 3101) on :
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.
[ December 21, 2004, 10:03 AM: Message edited by: Storm Saxon ]
Posted by Dagonee (Member # 5818) on :
Calling the lack of a cure "the worst" is pretty much what I'm in opposition to.
Dagonee
Posted by ae (Member # 3291) on :
Sara Sasse:
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.
Posted by Jaiden (Member # 2099) on :
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.
Posted by AvidReader (Member # 6007) on :
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.
Posted by Dagonee (Member # 5818) on :
The problem is that right now, with no "cure" being available, treating it as a "defect" pigeonholes those with the condition.
Dagonee
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
Posted by ae (Member # 3291) on :
Jaiden:
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.
Posted by Jaiden (Member # 2099) on :
quote: How? No one's answered this question yet.
Diversity.
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.
Posted by Lost Ashes (Member # 6745) on :
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>?
Posted by Synesthesia (Member # 4774) on :
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..
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
Posted by ae (Member # 3291) on :
Jaiden:
quote:Diversity.
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.
Posted by Trisha the Severe Hottie (Member # 6000) on :
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.
Posted by Dagonee (Member # 5818) on :
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?
Dagonee
Posted by Dagonee (Member # 5818) on :
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.
[ December 25, 2004, 09:33 AM: Message edited by: Dagonee ]
Posted by ae (Member # 3291) on :
Dag:
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?
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
[ December 24, 2004, 10:33 AM: Message edited by: Dagonee ]
Posted by ae (Member # 3291) on :
. . . and now I find I don't, at the heart of it, disagree with you at all.
Harrumph.
Posted by Dagonee (Member # 5818) on :
Merry Christmas!
Posted by Aelysium (Member # 2940) on :
Bah, humbug!
Merry Christmas to you, too. Posted by Synesthesia (Member # 4774) on :
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?
Posted by Dagonee (Member # 5818) on :
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.
Dagonee
Posted by Trisha the Severe Hottie (Member # 6000) on :
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.
Posted by Synesthesia (Member # 4774) on :
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I really didn't care if it was a boy or girl. ![[Razz]](tongue.gif)
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