"Confessions of a 'Genetic Outlaw'"
BusinessWeek has a great and moving piece discussing the implications the implications of increasingly refined and effective means of screening embryos. The article is penned by "one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies."
I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a "cure" for my son's Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, "But how will you know who I am, then?" And I would also think hard about whether the world would really be a better place without my son's soft, gentle, deep, almond-shaped eyes.
Whole thing here. It's easy to say that, at some point, it will be possible to cure many diseases in utero, but it's also true that what counts as "normal" and "abnormal" will change over time, so parents will always have choices to make, even or especially in an age of "designer children." In any case, it was striking to read an article that is not archly ideological but rich in human experience.
Hat tip: John Derbyshire over at The Corner.
Reason's forum on human enhancement touched on many related issues. That's online here.
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That was the most moving article I've read in a long time. I say that as a woman who had amnio for both pregnancies with the definite intention of having an abortion if the tests had found Down's. (Both tests were fine, and I am now the mother of two -- well, genetically anyway -- perfectly normal boys.) I have to say, though, that because I'm a coward doesn't mean anyone else should be. It certainly doesn't mean that anyone should be slinging around names like "genetic outlaw." She had a baby; she didn't commit a crime.
The one anti-abortion argument I respect a lot says that we are using pregnancy termination as an easy fix for a problem we need to address more carefully -- that of curing the disability or finding a place for the disabled in society. I have no idea how to even begin on that task, but the discussion this article is going to spark should help.
in the '60s I used to help my mother run a nursery during church services. One of the kids had Downs Syndrome and forty years later I still have this vivid image of him aimlessly swinging a plastic jack-o-lantern. I wish I remembered his name; he was a sweet kid.
"The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, "But how will you know who I am, then?" And I would also think hard about whether the world would really be a better place without my son's soft, gentle, deep, almond-shaped eyes."
What the everliving fuck is wrong with these people?!
Your kid suffers from a disease, and you think this makes him some kind of Precious Moment??
"What the everliving fuck is wrong with these people?!"
Nothing.
mediageek,
Your kid suffers from a disease, and you think this makes him some kind of Precious Moment??
Our histories, including our illnesses. make us who we are. My right eye was gouged out by birthing tongs during my delivery which left me without stereoscopic vision. It has shaped my life in many ways. For example, as a child I had great difficulty playing any sport that involved a ball flying through the air because I cannot accurately judge distance. This made me last picked for teams and generated the typical emotional distress.
However, if I could go back in time and prevent the injury I would not do so. For better or worse, the eye helped make me who I am today. Without it I most likely would have been an athlete like all my age-peer relatives instead of spending so much of my youth reading. My personality might have been much different.
Likewise, Schiltz's daughter understands that her genetic defect made her the person she is. Without it, another personality would exist.
mediageek,
[i]What the everliving fuck is wrong with these people?!
Your kid suffers from a disease, and you think this makes him some kind of Precious Moment??
Comment by: mediageek at July 26, 2006 02:00 PM[/i]
That's part of why she wrote the article, because so many people nowadays think it's absolutley horrifying that you would allow a child to live with such a "disease" or to treat it as something other than an abomination.
I have two reasons why I'm against the whole eugenically-minded attitude of "why allow someone to live with that kind of disability and aren't you abusing your child allowing them to live that way" because first my cousin is mentally retarded, and I would not want to disappear just because she makes other people feel uncomfortable. No, she cannot be a full-member of society and that is unfortunate, but there are things that make her a unique individual that seperates her from "normies", such as that her lack of intellegence does make her innocent and therefore a very sweet and happy person.
I guess that makes her a "Precious Moment" or something, but I can say that her life does have a value other than being another working body that the government can tax.
And second, when we start with that kind of attitude, then what about that good ole' slipper slope. With my Ankylosing Spondylitis, I have a HUGE personal stake in making sure "cripples" like myself and others aren't "reducted".
I think your reaction is normal in that why would someone find somehting crippling to be a cause of happiness, but is this woman causing her child abuse? My answer is no, since she cannot cure her child of Down's, I cannot see why it's wrong to make lemonade out of lemons...
Sorry, I gotta run, I'll check back in later...
It's possible that in the intermediate future they will develop the ability to cure a genetic disease like Down's Syndrome, and this woman would have serious qualms about curing her offspring* to the point of denying him treatment?
Nothing is wrong with that?
Note, I didn't RTFA.
*As a fetus or after it's born. Makes no difference.
Why do you think you'd be less of a person with two eyes. At the very least wouldn't you, all tings being equal, expect that you would be Shann + 1 eye?
I'm with you mediageek, this is ridiculous!
Schiltz's daughter understands that her genetic defect made her the person she is.
Yes, and it makes her a person who struggles to think and act normally on a daily basis! I wonder about your psychology, Shann, that you wouldn't fix a serious flaw in your vision because you're afraid you "may" have turned out to be someone else.
This all just sounds like a bunch of "you must suffer to grow" nonsense.
Without it I most likely would have been an athlete
I don't have any limitations and have a lot of athletic ability; I still read, because at heart I am a nerd. To think that a deformity was so instrumental in your personal development is giving weaknesses too much credit.
This is like saying that you don't want your kid to get glasses because you think it is cute when he squints.
I think at least some are missing the point about where the ability to test for genetic abnormalities, diseases or syndromes will take us as a society...that how we deal with them will only get more complicated...not less and the "answers" (such as they are) will get harder, perhaps (at least for some..if not many), rather than easier.
Those answers will also force us to further consider how, why and what we value.
A close friend of mine just gave birth to her 3rd child. He is Downs. She opted not to have genetic testing or a Level 2 sonogram despite being in her late 30s (Downs is heavily associated with mothers of advanced maternal age - 35+).
She is Catholic and - though she has not said - I think she probably did not want to be tempted to do anything against her faith or that she might have regretted regardless of her faith.
Needless to say, it has my wife and I considering our own desires for more children and how we would handle being in the same situation.
Just an anecdote:
I knew a guy with Down's Syndrome when I was a boy. He was one of the nicest and funniest human beings I've ever known. His impressions of Nixon and Carter were downright hilarious. (This was the late 70s.) He was a happy guy. I think the world was a better place while he was in it.
"I don't have any limitations and have a lot of athletic ability; I still read, because at heart I am a nerd. To think that a deformity was so instrumental in your personal development is giving weaknesses too much credit."
I had a great friend, Richard John Roisum (he died in 1988) that only had one eye and like Shann, loved sports. Nevertheless, he wouldn't participate in them because of concerns of losing the good eye too.
So instead, he became the sports editor of his high school paper. His writing style was fantastic and he won him some state level journalism awards.
Had he been able to play baseball, football, etc., there is no way he'd have had the time to learn to write as well as he did.
Richard John Roisum, RIP
Gee! Maybe we could whack every kid in the back of the head with a hammer and turn them into sweet, lovable, little half-wits!
I don't have a problem with a parent that chooses not to abort a DS child. I'd be less happy if there were a cure and the parent chose to withhold it. And what about a parent that chooses to deliberately have a DS child? Although some of these situations make me squirm, I think leaving the decision in the parents hands is the only conscionable alternative. I do however place limits on parental rights, I don't think we should allow parents to abuse their children. Deciding when something rises to the level of 'abuse' and when it's permissible to interfere with parental autonomy, is perhaps the most difficult question in libertarian philosophy.
This reminds me of deaf people that think deaf children should not be treated. I've heard similar grousing from the midg.. I mean dwar? I mean Little People (sounds even more demeaning if you ask me, but what do I know)
mediageek,
Reading the article might help.
The portion you quoted contained two distinct elements.
The first between a mother and her daughter with Down syndrome. They were discussing heaven, something I personally don't believe in. However, enough people do, and appear to benefit in this life from their belief (and who knows, maybe they'll benefit greatly in an afterlife), that I wouldn't say that there's something wrong with them for believing in heaven. Such belief does introduce questions like whether the child will have Down syndrome and have the facial characteristics of someone who does.
What is wrong with that?
The second was the author's own voice that she would indeed cure her son if given a chance, but that in some ways she knows he would be a different person and she already knows and loves the person he is. She did not go out of her way to create a child with Down syndrome; she chose not to terminate the eight cell embryo that was likely to be born as a child with Down syndrome. I would have, but that makes our choices different; it doesn't make her choice wrong.
JC,
You're misreading what she's written. She is not saying she wouldn't cure her son; she's saying exactly the opposite. Additionally, when she's mentioning her son's "soft, gentle, deep, almond-shaped eyes", she's not talking about the world losing a particular facial characteristic, but about the world losing a particular person.
Ayn_Randian,
"I don't have any limitations" that you see.
madpad,
I hope the ability to test genetics won't take us anywhere "as a society", because what people do with the knowledge should be an individual choice. Some will defer to their religions, everyone will bring his own experience and thoughts.
It's one thing to say "yeah, I'd have the kid anyway and love him/her", and it's another ball of wax entirely to glurge about the wonder of debility and how it just works out to make peoples' lives better...
My step-father wanted - really, really wanted - to become a pilot when he was younger. He couldn't, because of his poor eyesight. When he told me about this, he didn't see it as some sublime, hidden blessing, but as a regret.
Due to congenital heart problems I had, my mother spent most of the first year of my life taking me to doctors and not knowing whether I'd live to be a one-year-old. A lot of fear and worry there, but no warm and fuzzy closure beyond, "they got a break, and the baby lived".
All us mutants must naturally cluster or something, but I've had a lot of friends from childhood on with some congenital disability or disease, whether phsyical or mental, minor or serious. I've never known a single one who told me "Gee, I'm glad I have this problem and wasn't born without it."
mediageek and Ayn Randian bring to mind the "deaf culture movement" (or whatever it's called) whereby some deaf folks get all in a tizzy over parents seeking to get their deaf kids cochlear implants.
mediageek
If you could screen embryos and were able to weed out those that would grow up to become assholes, would you have made it?
I'm only half kidding
mediageek
If you could screen embryos and were able to weed out those that would grow up to become assholes, would you have made it?
I'm only half kidding
One of those questions that answers itself for the asker.
Comment by: anon2 at July 26, 2006 03:51 PM
Anon2,
Spot on. I was going to say something like that, but a lot longer and crappier. Thanks 🙂
IMAO, more problems are generated by the children of poor/badly educated parents than the relativly small number of chidlren with birth defects. Those families who are poor for several generations will probably stay poor and so cost society through being arrested and needing the care of by the state, costing $$$$$$$$.
If that is assumed, then we'll have come back full circle to the eugenicist movement, exhorting the poor to stop having kids. And why stop there when there are so MANY ways to make society better than fighting the non-ending battle against the poor...
Why, I can just see my friendly next-door utilitarian telling me how much $$$ will be saved for society if I just "reducted" all those kids I might have with HLA-B27, because all they are is just wasting $$$ that could be used to build buildings and invest in investments and all other great and stirring things!
Lovely.
"This all just sounds like a bunch of "you must suffer to grow" nonsense."
wait, are you serious?
i don't think the tone of his post was "we must all suffer for our art" or whatever, but simply that because of the accidents and incidents of his life, he became the person he is today. and he's content that things happened as they are. is that difficult to grasp?
if you can't travel back in time (assuming you don't kill your mom by accident or something) then you gotta live with what's happened. and sometimes, shitty things make us who we are, for worse and sometimes for better.
It's funny....and very, very, sad...
Mankind has struggled against a multitude of diseases and congenital handicaps (both mental and physical)since hominids evolved self-awareness. I find it ironic (and pathetic) that just as we are developing the science to eliminate or alleviate these ailments, some people feel the need to cling on to their condition as if it were a lifestyle choice while so-called bioethicists lecture us on who we should be happy with misery because "who are we to play God?" (e.g. Remember the article a couple of years ago about the "Deaf Culture" and their obstinate opposition to ear implants?) Granted, as a able-bodied mentally functional (with a few admitted emotional problems)adult, I could never appreciate the experiences that those who aren't, but I can't imagine wanting to be handicapped for sentimental or ideological reasons.
Over the years, I've had a lot of contact with mentally handicapped people. (No joke.) Whether it's autism (that is, if autism is a functional condition rather than a developmental one) or Downs syndrome, I would not wish that condition upon my worst enemy. I can not contemplate not being capable of using function "normally" in society with full use of my mental faculties. I feel for those people. I knew an autistic child at my grade school who spent most of the day screaming and carrying, unable to interact with people at no real level. In fifth grade, I knew mentally retarded children who were trying to grasp the alphabet while I was reading A Wrinkle In Time. If it were in my power to do so, I would take away their ailments so that can understand and learn as "normal" humans do. Maybe that makes me arrogant and a "eugenicist" in the eyes of some "bioethicists," but I would argue that it is not ethical to rob human beings of their true potential. The freak happenstances of biology should not be an impediment.
"She is Catholic and - though she has not said - I think she probably did not want to be tempted to do anything against her faith or that she might have regretted regardless of her faith."
Nice how she transfers the costs of her faith and/or fears to another.
"*As a fetus or after it's born. Makes no difference."
The real question is whether Mediageek would take the cure for his problems if it were offered. They are glaring to most of us, but he probably doesn't see them that way. He may consider his current state of being (the result of his genetic make-up developing along his personal historical path) as part and parcel to who he is. He might think that he doesn't need to be fixed to deserve or respect.
But then has trouble understanding complex topics and the perspectives of others.
At least he has some company.
"I don't have any limitations"
That's funny.
madpad, I don't understand...do I remind of the "deaf culture" folks or the ones who think they are idiots for denying their children a chance to correct a defect?
'Cause I think they are idiots.
"*As a fetus or after it's born. Makes no difference."
The real question is whether Mediageek would take the cure for his problems if it were offered. They are glaring to most of us, but he probably doesn't see them that way. He may consider his current state of being (the result of his genetic make-up developing along his personal historical path) as part and parcel to who he is. He might think that he doesn't need to be fixed to deserve our respect.
But then has trouble understanding complex topics and the perspectives of others.
At least he has some company.
"I don't have any limitations"
That's funny.
I don't think the writer means to advocate against curing disabilities. She tries to make the point that we're not really thinking about what we're doing. This is a more subtle point than the usual Leon Kass position that somehow misery is essential to humanity. One of the commenters pointed out that frequently genes that are catastrophic when you have two of 'em are beneficial with one, sickle - cell being the signal example. I thought of bipolar disorder and severe depression, which appear over and over in the families of creative geniuses. My uncle (by marriage, not a blood relation) was bipolar and committed suicide. His condition caused his family untold misery, but it seems also to have given them truly astonishing creativity and talent, including, oddly, talent for investing in the stock market. Would they have been better off without that particular genetic sword of Damocles? I don't know and wouldn't dream of speculating what they think. I do believe, however, that this is a subject worthy of a better discussion than we've given it.
.5b - I agree with your father. I wanted more than anything to be a pilot but couldn't because of my eyes. If I could have changed that, I would have donated a frickin' kidney or something.
I do agree with the sentiment that it's ok not to abort and to raise the child if there is no cure for the problem. I wouldn't choose that, I would rather abort, but that's me, and that may be a selfish attitude on my part. But if you could cure it, and didn't, that would bother me. Although again, that's my personal opinion. I'm not sure I have the right to force someone to agree with me...
Karen, just to clarify, are you seriously asking whether your uncle would have been better off without a mental illness that let to him committing suicide?
At a guess, I think we've got his vote.
Akira,
"but I would argue that it is not ethical to rob human beings of their true potential. The freak happenstances of biology should not be an impediment."
While I sympathize with your position, I think the element you are missing is the difficulty involved in defining what that true potential is, or which parameters of ability matter and which don't.
There is an underlying assumption here that Down's Syndrome= misery for child & family. It is a false assumption. Same goes for the Deaf culture debate. (FYI, I have worked in the field for over 15 years with all types of disability)
The fact of the matter is, is that all of us have serious differences in the way we approach the world. Some matter, some don't, some cause us misery, some cause us success or happiness. It is truly difficult to tease apart which factors are which making the question asked by the article one worth considering carefully. I have met children with profound disabilities that are a true asset to the world, and not because of the contrast they provide to the more conventially talented among us, or because of the challenge they presented to our humanity, but because they were great people. Part of who they were, however, may have been inextricably bound up in the "disability" that others so easily used to encapsulate who they were.
It ain't a black and white issue. Not by a long shot.
Karen, I'd say there's a difference between eradicating brain eccentricities, like those of a creative genius who happens to be mad, versus eradicating out-and-out flaws. There's plenty of room for debate about whether it's good or bad to have a perspective that lets you create great art but makes it impossible for you to have friends, but who would seriously and sanely argue that having abnormally low Down's-syndrome-style intelligence is a good thing?
Eric, sorry for the confusion, and no, absolutely it would have been the best thing possible for my uncle to be cured, for him and his family. My point is that there is some correlation between having the gene for the disease that killed my uncle and having unusual creative gifts. My one hesitation about genetic cures is that we might be eliminating something really valuable along with the bad traits. That having been said, I can't see any problem with cures that don't affect the germ line.
There's a book, "Choosing Naia" by Mitchell Zuckoff, that came out a few years ago--a non-fiction account of a couple who chooses to have a child who's been diagnosed with Down's in utero. It wasn't a religious decision, and they're both pro-choice. Very moving (not schmaltzy) description of a tough decision. BTW, I've met Naia, who's now 6 years old--she's a pleasant little girl whose parents and siblings love her very much. All children change your life profoundly; 'normal' kids can easily have issues down the road that are much tougher than Naia's. And yes, I'm ardently pro-choice--that's pro-CHOICE not pro-abortion.
There's a book, "Choosing Naia" by Mitchell Zuckoff, that came out a few years ago--a non-fiction account of a couple who chooses to have a child who's been diagnosed with Down's in utero. It wasn't a religious decision, and they're both pro-choice. Very moving (not schmaltzy) description of a tough decision. BTW, I've met Naia, who's now 6 years old--she's a pleasant little girl whose parents and siblings love her very much. All children change your life profoundly; 'normal' kids can easily have issues down the road that are much tougher than Naia's. And yes, I'm ardently pro-choice--that's pro-CHOICE not pro-abortion.
If a treatment for Down's syndrome, that enables children with that condition to live normal lives, ever becomes available, I'd be all for it. Without question, it is better to be "normal" than to be retarded.
Unfortunately, we do not currently have that option. The question now is, is it better to be dead -- the result of the usual "treatment" after detection in the womb -- than to be retarded?
Jennifer,
A lot of things are good or bad in comparison rather than as absolutes. Take intelligence, for example. There are enough people who have much higher intelligence than I, that were they all to be in one place and I were added to the mix, I'd have abnormally-with respect to the group-low intelligence. It wouldn't bother me, nor would it bother, I suspect, my parents.
I have yet to read a single article or comment that suggests anyone is arguing that having abnormally low Down syndrome intelligence is a good thing. What is being discussed is whether it's a sufficiently bad thing that the person shouldn't be born at all. So the comparison isn't Down syndrome intelligence versus normal intelligence, but Down syndrome intelligence versus non-existence.
Preimplementation genetic haplotyping wasn't available when my wife and I went through in-vitro (five times, two successful). If it had been and we were told that some of the eight cell embryos had DNA that was going to cause Down syndrome, I'd have recommended that they be destroyed. We were given the option of amniocentesis, but neither of us would have elected to abort a second trimester fetus, so we chose not to have the test done.
The author elected to have her eight cell embryo haplotyped, found out that he would have Down syndrome and elected to implant the embryo anyway. Down syndrome is sufficiently well understood that the author probably has good reason to believe that her child will have a high quality of life. Undoubtedly it will be a different life than a non-Down syndrome child will have, but differences aren't inherently wrong.
Now, maybe if I were the smartest person in the world, I'd see things differently and think that anyone who was less smart than I shouldn't have been born. Except that's not what you're saying. You've asked "who would seriously and sanely argue that having abnormally low Down's-syndrome-style intelligence is a good thing?" and the answer is "nobody, so far."
Eric, sorry for the confusion, and no, absolutely it would have been the best thing possible for my uncle to be cured, for him and his family. My point is that there is some correlation between having the gene for the disease that killed my uncle and having unusual creative gifts. My one hesitation about genetic cures is that we might be eliminating something really valuable along with the bad traits.
Fair enough, Karen, and thanks for the clarification. I think you have a reasonable concern, but I'd rather we worry separately about preserving or restoring valuable genes than considering that concern a reason not to address harmful genes.
"If you could screen embryos and were able to weed out those that would grow up to become assholes, would you have made it?"
If it meant I never had to put up with statements like the above?
Hue betcha.
"If you could screen embryos and were able to weed out those that would grow up to become assholes, would you have made it?"
If it meant I never had to put up with statements like the above?
Hue betcha."
That's what it would mean, but not for the reason you imply.
A fellow weed-ee
I think Schiltz is concerned that "you can choose to abort genetically damaged fetus" rapidly seems to evolve to a cultural "you should abort" and then perhaps on to a legal "you must abort." Also, she worries that as people with genetic damage grow rarer, people will begin to view those that remain as monsters.
Nothing she advocates suggest that she opposes curing any diseases. I think she worries about how we respond unconsciencously to the changes technology makes possible. Instead we should think carefully how we respond such that "can" doesn't turn into "must."
By the way, Shann above is me. My name got truncated for some reason.
"He may consider his current state of being (the result of his genetic make-up developing along his personal historical path) as part and parcel to who he is. He might think that he doesn't need to be fixed to deserve our respect."
"But then has trouble understanding complex topics and the perspectives of others. "
Oooh, look at you, with your multisyllabic attempts to call me stupid whilst appearing sympathetic at the same time.
I have to wonder if you're half as much of an insufferably condescending pseudo-intellectual prig in real life.
"I have to wonder if you're half as much of an insufferably condescending pseudo-intellectual prig in real life."
Yep. At least half, maybe more.
crimethink,
What's your basic concern here?
"That's what it would mean, but not for the reason you imply."
I'm fully aware of what the original poster was implying.
So far I haven't seen any responses concerning the costs to society (taxpayers) to support the disadvantaged. As long as I'm paying for their support in any way, I'd say that we should also have some say in that. I'm all for parents having the choice of terminating a potential bad out-come fetus or for bring the kid to full term, but I also think the same parents if they chose to bring the kid to term should bear the costs of supporting it.
"Yep. At least half, maybe more."
Christ, no wonder you're so afraid of getting shot.
Mediageek,
"He might think that he doesn't need to be fixed to deserve our respect."
By the way. In case you missed it, the comment was really aimed at your lack of respect for others, not your intellect. A parody of your position, as it were.
"Christ, no wonder you're so afraid of getting shot."
Says, the man who needs a gun under this shirt to feel safe in the world.
LoL ;~)
"A parody of your position, as it were."
For future reference, try not to forcibly sodomize the meaning of the word "parody," mmmkay?
Mediageek:
For future reference:
Websters--
Parody: a feeble or ridiculous imitation.
So what about the issue at hand? Have anything to add to the discussion aside from your original disdain for the article you didn't read?
Would you honestly give a fuck if I did, or are you just being a patronizing asshole?
Anon2
"What is being discussed is whether it's a sufficiently bad thing that the person shouldn't be born at all."
Actually, there is also the issue of whether a condition that is essential to how a person is defined should be cured even if that makes them into, essentially, a different person. It is the "Flowers for Algernon" question... from where does the person's worth eminate? Is it a superficial, measurable trait (like Down's) or is it more latent and difficult extract from the complex that makes a person who they are.
"Would you honestly give a fuck if I did, or are you just being a patronizing asshole?"
Sure I would. You were the first one to claim that this is a non-issue, but admitted to not reading the article. Since you've read the thread, I am guessing you might have thought of the issue a bit since. Did your position change?
I assume that the knee-jerk reaction wasn't your final take on the issue (although, thinking about your previous posts... I seem to remember being called a liar when discussing my personal experience on a topic...maybe your knee-jerk reactions are all you've got. You could prove me wrong, quite easily).
See, there you go.
You *almost* reel me in, and then throw out some backhanded comment that just gives me the desire to sling insults at you rather than actually consider that you might have a point.
I wonder how far all this will go.
I think that people with IQs less than 120 are a waste of resources. Will there be people with power in the future that think the same? Will they use their power to eliminate all those dummies?
Disability is a relative concept.
"See, there you go.
You *almost* reel me in, and then throw out some backhanded comment that just gives me the desire to sling insults at you rather than actually consider that you might have a point."
Okay. Here's one with no "backhanded comment."
Has your position changed on the topic at hand after further consideration?
You know, I really don't see why the discussion of the above issues has to be as complicated (nuanced?) or as confused as it is on this thread. I think it's actually very simple; just answer this question: Would any of you like to trade places with the child? Would YOU like to have Down Syndrome? No? Then how dare you suggest that it is okay for someone else to have it? How dare you suggest that it is okay for someone to inflict that sort of life on someone else?
Eric,
I have nothing to take up with Shannon Love, because I understand where he's coming from. Apparently he's happy where he is today, despite not having sight in two eyes. He doesn't know what he'd be like today were he to have had stereoscopic vision. He's taking a known-good position and holding it.
When I was nineteen, I did something stupid. (It wasn't the first time, nor is it likely to be the last.) The net result is that I have three kids, two of which (twins) were conceived from donor eggs. I love my wife greatly and I really wish that we had been able to have used her eggs for all three of our kids.
However, realistically, had I not been so pig-headed as a kid, even if you assume the rest of my life would have remained the same and the only difference is that our three children would now have the same biological parents, I don't know that I'd choose to push a button that would pop me into such an alternate reality, because I love the three kids I have. They're "known good." The hypothetical kids might be, in some sense better, or might be worse, but I don't lose any sleep over it and I'm actually quite happy with our situation.
Shannon Love appears to be happy with his life. Yay. I wish you the best with yours.
"How dare you suggest that it is okay for someone to inflict that sort of life on someone else?"
The question is, does the person feel like their life has been inflicted on them? I somehow doubt it.
"How dare you suggest that it is okay for someone to inflict that sort of life on someone else?"
The question is, does the person feel like their life has been inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
No, the question is the one that I asked. Why don't you answer it?
jw -
So what about an answer? No, I wouldn't trade places with someone with Down's syndrome nor would I trade places with someone making half my salary with no prospects for increasing their income in the future.
Then how dare you suggest that it is okay for someone else to have it? How dare you suggest that it is okay for someone to inflict that sort of life on someone else?
Are you the final arbiter of ok people? What do with do with non-ok people?
And exactly who said it was ok to "inflict" this on someone else?
From what I understand about the disease, which is admittedly very little, it's not like the parents where carrying around vials of military grade DS disease with the hopes of "inflicting" their next child with it.
jw,
So your assertion is that nobody who you wouldn't trade places with should be born? You may be sincere in thinking that your question is insightful, but it's merely inciteful. However, if it helps answer your question, I wouldn't like to trade places with you.
jw,
Would YOU like to have Down Syndrome?
If the only other option is being snuffed out in the womb, then yeah.
Heck, I wouldn't want to live in Iraq either, so I guess that justifies us killing all those civilians. After all, if you wouldn't trade places with an Iraqi, that means you're a hypocrite if you don't want them dead.
"So your assertion is that nobody who you wouldn't trade places with should be born? You may be sincere in thinking that your question is insightful, but it's merely inciteful. However, if it helps answer your question, I wouldn't like to trade places with you."
Comment by: anon2 at July 26, 2006 08:05 PM
Well, if it isn't good enough for you, why is it good enough for someone else? Apparently my question is "insightful" enough that three of you so far have attempted to dodge it.
So you wouldn't like to trade places with me? You're insinuating that I'm retarded or somehow mentally defective? Oh, that's cute. Damn! That's so clever I almost didn't catch it,...half-wit that I am. You might not want to be me, but at least I don't have to fuck a test tube in order to make babies. What do you fuck the rest of the time - your hand?
You want "inciteful", you can have inciteful.
jw,
Would YOU like to have Down Syndrome?
If the only other option is being snuffed out in the womb, then yeah.
Comment by: crimethink at July 26, 2006 09:03 PM
Well at least you have the honesty to deal with the question - I'll give you that much. But my point is this - you may have the right to answer that question for yourself, but do you have the right to answer it for someone else? Isn't the real issue the fact that NONE of us have a say as to whether we are born or what kind of life we are born into? Don't prospective parents have an obligation to their children to consider such quetions? Is it moral to have a child that will be severely handicapped or that will have to live a life of privation and misery - just because one wants to be a mother (or father), or because one wanted to get laid that Saturday night? I don't think so.
Dude,
You might not want to be me, but at least I don't have to fuck a test tube in order to make babies. What do you fuck the rest of the time - your hand?,
that was unmitigated bullshit.
I work in a freakin' hospital, and of all the things that can go wrong with people, Down's is not the one to get angry about, especially considering that there are millions of normal children out there who are savagely beaten and sometimes killed by their parents.
And just what can be done about Down's? Since you act as if this lady purposely made her child with Down's, that you must have some brilliant scheme that will cure all those children...right?
But considering the intellectual worth of your last response, I can safely assume that this wonderful cure probably won't be coming from you.
Oh well, I guess I'll just have to wait for another one of your retarded responses.
Oh! I'm sorry, did I hit a nerve? My bad...
The question is, does the person feel like their life has been inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
So if the person isn't bright enough to know that he got the short, dirty end of the stick, then it's okay? Hey, if I can cheat you out of part of your money every month without you catching on, would that be okay?
The question is, does the person feel like their life has been inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
So if the person isn't bright enough to know that he got the short, dirty end of the stick, then it's okay? Hey, if I can cheat you out of part of your money every month without you catching on, would that be okay?
Comment by: jw at July 26, 2006 09:56 PM
You know what would've been even cooler, if you told that stupid woman to ABORT THAT ABOMINATION NOW!!!
If the abortion occured, no more kid with Down's. The kid doesn't even freakin' exist! Why are you even trying to pretend that the all the lady had to do was just get an abortion and then the kid would be perfectly fine...the kid would not even EXIST!!
But, I guess that would assuage your conscience, retards really just aren't fit for living, I mean, they didn't even know that their existance automatically condemns their mothers as EVIL for allowing them to live and whatnot...
Yes, that is a strawman, and no you don't deserve a better response...
crimethink,
What's your basic concern here?
The statement from this lady that incited so much venom from some us reads, again:
And I would also think hard about whether the world would really be a better place without my son's soft, gentle, deep, almond-shaped eyes.
If you have to CONSIDER that the world, especially for your child, might be a better place had there been a cure, or one were developed, for someone with a tragically low IQ, well, then there needs to be a cure for people like you as well.
Must restrain self...don't want to get thrown off of H&R....
Short answer: the world would be a better place if your child did not have Downs. That may sound elitist, but suck it up; it's the truth and everyone knows it.
Dude,
You might not want to be me, but at least I don't have to fuck a test tube in order to make babies. What do you fuck the rest of the time - your hand?,
that was unmitigated bullshit.
Comment by: Frank_A at July 26, 2006 09:53 PM
Considering the bullshit remark that it was in answer to, no, I don't think it was. If you or he can't take it, you shouldn't start it to begin with,"Frankie".
As to what can be done about Down's? Real simple, Frank: if a woman knows that she will give birth to a child with Down's, then she should abort the pregnancy (providing she didn't wait until the end of the 2nd trimester.) Or, if that offends her precious religious sensibilties, maybe she shouldn't get pregnant at all, if there's a likely chance of Down's. So she wants to be a mommy. So what? Alot of people want alot of things.
Yes, there're many misfortunes that can and are visited on children in this world, and Down's certainly isn't the worst birth defect to have. But speaking as someone who has a thirty-something year old cousin with it, I can tell you that it's no picnic either.
I don't care about abortion in this current debate; it's irrelevant except to those who brought it up. What I care about is that this woman said she would "pause beforehand" before giving her child a cure for her DS. That, coupled with the fact this halfwit cites her kids freakin' eyes as the reason is what makes my blood rise.
Disclaimer: I don't have a lot of sympathy for people, for emotional or religious reason, who deny their kids healthcare. Hence my disdain for Jehovah's Witnesses, Christian Scientists, Seventh-Day Adventists, the Amish and the flippin' idiot quoted in the article.
Yes, there're many misfortunes that can and are visited on children in this world, and Down's certainly isn't the worst birth defect to have. But speaking as someone who has a thirty-something year old cousin with it, I can tell you that it's no picnic either.
Yeah, I got someone in my family who's mentally handicapped too, but I'm not going to look down at my aunt and uncle because of their "recklessness" in having my cousin...
And it's not like someone with Down's automatically doesn't have sentience.
You can ask them directly, do you want to live?
Those who are intellegnt enough will most likely say yes.
Ask them, do you like life?
Those who are intellegnt enough will most likely say yes.
Why should/would I want to erase the existance of someone who wants to live and loves life, and not only that, brings happiness and joy to my family because of their existence in spite of the fact that they do have a disability?
Not to mention, Down's mainly does not cause suffering for that individual, so why is it so wrong for them to live?
The only people who feel bad who might feel bad are the caretakers who have to spend the extra time and effort for their children.
This just smacks of ye' olden days of Manicheism where it was considered better for a child not to be born in this material world full of sin and evil when they could live as pure spirits in the ether...
And another thing, who gets to decide if someone isn't fit for life?
Since my AnkSpond could be interpreted as "costing society" since extra money is being spent for my medications and will likely be spent when I need back surgery in the future, am I not a "problem" for society? Wouldn't it have been better "investment" for my parents to reduct me for another pairing of sperm and egg? Frankly, things that smack of eugenics scare the crap out of me because my "disability" might be considered somehting that needs to be "cured" of, including the limitation of my reproductive rights.
Furthermore, what about people who have brain trauma and lose most of their intellegnce? Are they automatically now considered just a bag of meat that's better to be thrown away or at least be put in a dark corner so no has to deal with them?
Some people may feel better off dead with a loss of intellegence, but remember that people with Down's never even had that baseline to begin with. Many cannot even imagine a different world with more intellegence, just like a person who has lost the part of their brain for sight or smell lose even the ability to recall what anything looks or smells like...
I'm the father of a 3-year-old girl with Down syndrome. In our case, we knew through prenatal testing that we were at higher risk. We had a meeting with a "genetic counselor" who summed up the various test results and risk factors, and estimated about a 6% chance that our child would have Down syndrome. We were given the option of more invasive testing to give us a definite answer, and we chose against it. Terminating the pregnancy wasn't a legal option by that time; but I don't think we would have chosen differently if we'd been given the chance earlier. So the real diagnosis didn't come until after delivery.
If we had the opportunity to reverse some of the effects of the Down syndrome in my daughter, I wouldn't hesitate. I don't think her Down syndrome defines who she is; I'd give anything for the chance to see who she could be without it. On the other hand, I can imagine some possibilities that might make it a harder choice. What if the "cure" required painful procedures or therapies, with only a chance of improvement? Suppose we could start over on a normal development, at the price of losing everything she's gained up until now? It would be painful to make that decision when she's three; maybe impossible when she's ten. The simple fact is, she may eventually be the happiest and most well-adjusted of any of us, just as she is. She certainly has a much different future ahead than her sister does, but I think her chances of a happy and fulfilled life are as good or greater.
We certainly aren't sorry she's here, and I doubt very much she'll be sorry she's here either, when she's in a position to consider it. One couldn't by any measure argue that she's "suffering" from her condition. There may be plenty of good reasons to consider terminating a Down syndrome pregnancy, but "because it's kinder to the child" isn't one of them, in my opinion.
I don't care about abortion in this current debate; it's irrelevant except to those who brought it up. What I care about is that this woman said she would "pause beforehand" before giving her child a cure for her DS. That, coupled with the fact this halfwit cites her kids freakin' eyes as the reason is what makes my blood rise.
Disclaimer: I don't have a lot of sympathy for people, for emotional or religious reason, who deny their kids healthcare.
But she didn't even deny her kid healthcare because there isn't one in the first place!
And you missed the whole part of
If one of these scientists found a "cure" for my son's Down syndrome, I almost certainly would give it to him. Doesn't this line make any difference or are you assuming she really just wanted a Down's baby?
As for abortion, did you even try reading the article? This whole article's purpose to defend herself from people who made claimed she was a bad person for not getting an abortion! It's not like we got that part of the discussion out of thin air...
Also, why is having some feelings of hesitation morally analagous to forbidding getting your children blood products, like Jehova's Witnesses?
Also, why is having some feelings of hesitation morally analagous to forbidding getting your children blood products, like Jehova's Witnesses?
Comment by: Frank_A at July 26, 2006 11:52 PM
Ok, let me rephrase that.
Why should it be morally analagous?
People can hesitate in making all sorts of good decisions or ones that prevent them from doing harm/bad.
Are we to scold them for having a loss of confidence/backbone/etc. ?
I have heard too many stories of how a soldier can turn from a Super-Marine-GIJoe training in the USA and then turn into a pile of cowardice in their first experience of actual combat and then later came up and did their job and did it well. Am I suppsed to call them a coward even though they did their job?
I think that would be very unfair...
Look, the reason it's morally analagous is because this woman said she would have to think about it! What's to think?!
To the parent "KaeZoo"...I can't understand what it would be like, and I am glad that you're at least willing to say that you would treat your child's deficiencies if given the opportunity. The only quibble I have is when you wrote What if the "cure" required painful procedures or therapies, with only a chance of improvement?
That wasn't really the definition that I or most other people think of as a "cure". But I can see your point; perhaps we should not think of "Cure" here in the penicillin-for-gonorrhea sense and think of it as radiation-for-cancer sense. However, when I wrote what I wrote, I was on the penicillin definition; a simple pill or injection.
I worked with numerous Down Syndrome people a number of years ago. I didn't like a few of them very much - couldn't see myself as friends if we didn't have to work together. With others, I keep in touch to this day as they were wonderful, fun loving, funny people. If I had the power to cure them of their syndrome would I do it? In a heart beat. Would I snuff them out in the womb? Absolutely not. I answer this way to both questions as I don't believe who these people are can be reduced down to their syndrome. It is a part of them, that does influence who they are, but does not totally determine it either. In some cases, they would just be more productive, witty, and fun loving than they already are. And the asshole Down's people would still be assholes...I'm guessing anyway.
I don't know how they would answer to the first question but my guess is probably they would want to be normal as well. For the second question, I am certain none of them would choose to have their lives snuffed out simply because they don't have the same potential as the rest of us.
I don't know how they would answer to the first question but my guess is probably they would want to be normal as well
Very good point.
The best thing would be to ask them if they WANT to be cured.
I don't know what age Ms. Schiltz child is, but if she truly does love her child than if the child wants to change, she should allow it to happen...
They wish to cure us...and I say, WE ARE THE CURE!!
"So if the person isn't bright enough to know that he got the short, dirty end of the stick, then it's okay? Hey, if I can cheat you out of part of your money every month without you catching on, would that be okay?"
And what if the person isn't bright enough to understand that Down Syndrome is not equivilent to severe mental retardation? The range of problems and disabilities varies from individual to individual. The person with Down Syndrome is an individual with a personality and awareness, intelligence, opinions, desires, an emotional and sexual life.
As for your insightful question.
No. But I wouldn't want to trade places with anyone else either since I am happy with who I am. That is the crux of the debate in case you missed it. "Curing" down syndrome would not be like taking away a few health problems. You would be talking about fundamentally changing who that person is, and that may or may not be the best course. It is certainly worth a pause to consider the implications. I bet you'd be surprised to find that most people living with Down Syndrome are pretty happy with who they are most of the time (just like everyone else in that respect). As KaeZoo nicely pointed out (thanks for the willingness to share in this hostile environment, by the way) it is a misconception to believe that children with Down Syndrome are suffering from their condition.
Just as you don't suffering from your condition, I would guess. The issue is as nuanced as this thread indicates, despite your unwillingness to grant people with Down Syndrome and those who love them moral room to contemplate the difficult questions. I hope you never have to face them yourself.
Mainstream Man:
"Just as you don't suffering from your condition, I would guess"
Isn't this basicly the same insult that you tossed at Media Geek way up thread? MUST you recycle your obtuse little barbs - is that really the best that you can do?
"And what if the person isn't bright enough to understand that Down Syndrome is not equivilent to severe mental retardation?"
Which person are you refering to there? Myself? Is that supposed to be another of your "intellectually brilliant" efforts at witticism? Or are "geniuses" such as yourself so advanced above the rest of us that you don't even know when you are being insulting? Just part of the burden of having to deal with all your mental inferiors, huh?
Either that, or perhaps you have a bit of a "condition" of your own (how's that superiority complex and projection issues problem working out for you these days? Do you think the Doctor will release you anytime soon? What is his prognosis regarding your reality-avoidance phobia?)
You know, most of the people (including myself) who read Hit&Run and who post comments here are plenty bright - and bright enough that most don't feel a need to prove it. If they were not, they would not be interested in the topics discussed here. For you to think or imply, as you obviously do, that your foggy, er..."nuanced"... mind is somehow superior to any one of them would be laughable under even the best of circumstances. As things are, it is merely a misfortune for you,...and an embarrassment for the rest of us to witness.
I think Media Geek called it pretty accurately way up-thread when he refered to you as just a "patonizing asshole". And I think he probably chose wisely in dismissing your remarks as unworthy of further consideration. Likewise, I think that I, too, shall dismiss them in the future. Frankly I've flushed better shit down the toilette everyday of my life. Pity that you aren't as regular, isn't it?
You mentioned something about disrespect for others' points of view up-thread. If you were not so clueless, you might realize that the same observation could be made concerning yourself. Comment, if you wish - or if you feel that you must - but you'll elicit no more response from me.
Oh! One last thing: if you don't want the Reason server to post your comments twice, thrice, etc.? do not click on "Post" more than once. I know people in your age group have "instant gratification" issues, but DO be patient with the little Reason server. Your frustrated jabbing at the Post button only confuses it. Click it once and then give it time...it will post. It's just slow sometimes. You know all about slowness, don't you?
jw.
Wow.
Did you just accuse me of being disrespectful.
Read some of your comments on this thread again.
Something about "If you or he can't take it, you shouldn't start it to begin with..." seemed to come from one of the posters here... hmmmm wonder who?
My saying you are not suffering from your condition is only an insult if you consider your condition insulting (it does make my statement untrue, but that's a different matter).
I have readily admitted to being a patronizing bastard. I never claimed, however, to be smarter than anyone here.
How you doing with that self-reflection?
I don't mind attacking those who attack others.
I ain't too worried about your response or lack thereof.
As for insulting the intelligence of the H&R boards, I believe you were the ones calling the topic a no brainer (then hurling insults when people challenged your position).
I was defending the intelligence of the discourse.
PS. Love the poop humor. Keep it up...it suits you.
[My saying you are not suffering from your condition is only an insult if you consider your condition insulting (it does make my statement untrue, but that's a different matter).]
The true insult here would be that you are taking as a given that either he or MediaGeek even has a "condition" and that you take for granted that others will let your premise go unnoticed and unchallenged. 'Tain't likely, McGee.
"The range of problems and disabilities varies from individual to individual. The person with Down Syndrome is an individual with a personality and awareness, intelligence, opinions, desires, an emotional and sexual life."
Exactly right.
' "Curing" down syndrome would not be like taking away a few health problems. You would be talking about fundamentally changing who that person is, and that may or may not be the best course.'
Not sure about this. Is it really that the syndrome is fundamental to who they are or just that it is influential? I take the latter view. How influential is up for debate and also depends on the individual with Downs, the degree of the severity of the syndrome.
People with Down's, regardless of how high functioning they are, do tend to be limited in terms of the quality and quantity of work they can do compared to the quantity and quality of work they could do if they did not have Down's. This does not mean their value as people should be reduced down to this factor, any more than the value of anyone else should be reduced down to the work they can do, but it does suggest another factor in the decision of whether someone should intervene to provide a cure in the womb if possible. Perhaps a more important point is that people with Down's tend to have shorter lfe spans, and there's a link as well to Alzheimers. Knowing that, I would think a responsible parent, if they knew they could provide a cure for Down's in the womb, would make that decision.
"Perhaps a more important point is that people with Down's tend to have shorter lfe spans, and there's a link as well to Alzheimers. Knowing that, I would think a responsible parent, if they knew they could provide a cure for Down's in the womb, would make that decision."
Comment by: happenstance at July 28, 2006 01:09 AM
Yes! That IS an important point and one that no one else has mentioned so far. People with Down's ARE known to have a shorter average life-span. My cousin, being as old as she is, is at the upper end of the scale and almost something of an anomaly; but probably she will only barely outlive her parents.
Quite often they have any number of serious congenital, physiological conditions. That right there tells me that they often suffer - physically, if not necessarily mentally If it could be prevented by some treatment in the womb, then it should be. For those that argue that this would be "playing God"
I assert that doing nothing would equally be playing God.
Treatment or cure, yes. Abortion, fuck ya. Anyone who thinks that way should probably have been aborted for their own less than perfect selves.
Abortion, fuck ya. Anyone who thinks that way should probably have been aborted for their own less than perfect selves.
Comment by: grimeyguttersnipe at July 28, 2006 04:49 AM
It's always been my view that the rabid anti-abortion crowd are themselves one of the finest arguments in support of not only abortion, but forced sterilization as well. 🙂
Smartass,
I'm not against the right to abortion. I'm against the idea that because someone is less than perfect, has some sort of syndrome, defect, etc. they *necessarily* should be aborted. I favor treatment, if available, but it doesn't follow from that that I should favor abortion if treatment is not available, as none of us are completely perfect either.
"Not sure about this. Is it really that the syndrome is fundamental to who they are or just that it is influential? I take the latter view. How influential is up for debate and also depends on the individual with Downs, the degree of the severity of the syndrome."
Influential is probably a better term, and of course it has to do with the individual, but when you are talking about changing a genetic trisomy it is hard to predict what fundamental changes to that persons personality you are going to impact.
"The true insult here would be that you are taking as a given that either he or MediaGeek even has a "condition" and that you take for granted that others will let your premise go unnoticed and unchallenged."
This is actually not an insult, but a point. All of us have a condition. It is only when you define someone else's condition as something that makes them defective that you can dismiss the issue of what it would mean to make a fundamental change to that condition as trivial.
I took it for granted that Mediageek or jw would challenge the statement, but still thought it was a point worth making.
"If it could be prevented by some treatment in the womb, then it should be."
The assertion that a genetic disease should be prevented from occurring is different than one saying that an existing person by default needs to be cured of their condition. And it is far different from saying that they should not have their existence inflicted on them. The last would be playing god.
[And it is far different from saying that they should not have their existence inflicted on them. The last would be playing god.]
If that is playing God, then so be it; make the most of it. Now slither on out of here, shape-shifter.
O Lord, I pray. Save me from thy followers.
Granted, my son. Now, you're closer to the coals than me, would you mind pouring just a little water over them?
I'd be happy to piss on them for you...especially if you've run dry after all these years (I would think you would have!)
I was wondering what that smell was. And I was going to ask you what *you* were in for but I think I can guess.
Man, isn't there anyone else down here but pissin' in public libertarians?
"pissin' in public libertarians" .....finest kind!
"Yeah, verily, I sayeth unto thee. He that pisseth on the wall shall surely be put to death."
(Deuteronomy?)
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