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
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"
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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.
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.
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posted
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.
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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.
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.
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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.
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posted
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.
posted
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.
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posted
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.
posted
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.
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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.
posted
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.
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posted
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.
posted
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.
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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?
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posted
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?
posted
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.
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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?
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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.
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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.)
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*
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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.
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posted
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.)
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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.
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posted
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 ]
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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?
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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.
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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 ]
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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?
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posted
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.
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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.
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.
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posted
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.
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.
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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.
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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.
Posts: 2443 | Registered: Apr 2002
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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. Posts: 2283 | Registered: Dec 2003
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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 ]
Posts: 2919 | Registered: Aug 2004
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posted
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.
posted
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?
Posts: 9942 | Registered: Mar 2003
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posted
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.
Posts: 14428 | Registered: Aug 2001
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posted
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.
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