Hi, weekend Pandagonia! And welcome to my first “real� post as a member of the weekend team. This one clocks in at well under 20,000 words, in part because I have sneakily written some of it elsewhere.
Up in Canada, which is (as some Americans are aware) a whole nother country, the Toronto Globe and Mail has graciously made available my little essay on prenatal testing. I’m linking to it not only because Pandagon is one of the best reproduction-rights blogs on the Internets, a place where one expects to see sharp discussion of such things, but also because the politics of prenatal testing sometimes confuse and complicate the politics of abortion. There are people who oppose abortion except when the fetus has a significant disability; there are people who support a woman’s right to abortion but oppose prenatal screening on the grounds that it will lead to a revival of eugenics. And, as I point out in the essay (by way of the work of Rayna Rapp, who’s written a terrific book on the subject):
the ultra-orthodox Hasidim in New York are strenuous promoters of prenatal genetic screening because Tay-Sachs disease — a genetic disability so excruciatingly debilitating that it sometimes seems as if it were invented by bioethicists as an extreme limit case — occurs disproportionately often in Ashkenazi Jews.
You can learn more about Tay-Sachs here, if you like — and then you can think about whether you would seek to bar prospective parents from screening for it. Interestingly, Rapp points out that while otherwise politically and culturally conservative Jewish groups (one of which advocates prenatal screening and conducts arranged marriages) have embraced screening for Tay-Sachs, the Catholic Church (OK, folks, here it comes) in New York City owned the airspace rights to a new hospital building under construction and demanded that “genetic counselors be barred from working in the new maternity service to be located there.â€? So while some religious traditions can be downright extremist, it’s not as if all religious conservatives agree about this kind of thing. Nor is it the case that all opponents of screening are conservative; some of them are disability-rights activists whose politics are generally feminist and socialist.
Of course, genetics counselors are supposed to be “nondirectiveâ€?: they’re not supposed to tell prospective parents what to do, they’re simply supposed to inform prospective parents of the relevant statistics and the latest medical information. Still, some parents insist that obstetricians and genetics counselors think too readily of “positiveâ€? screens as grounds for terminating pregnancies — and as Rapp reports, to make matters still more complex, some of the women she studied went to genetics counselors precisely in order to be told what to do. What do you mean, “nondirectiveâ€?? they complain. You’re the genetics expert here — you’re supposed to counsel me!
Anyway, just in case you didn’t already know, I happen to have a 15-year-old son with Down syndrome. His name is Jamie, and he rocks. My wife Janet and I didn’t opt for an amniocentesis back in 1991, for reasons I explain in the Globe and Mail piece (and more fully in this book). But in more recent years, tests have been developed which can detect Down syndrome as early as the eighth week of pregnancy, using nothing more invasive than a blood test. So if, like me, you support women’s reproductive rights, and the rights of prospective parents to obtain the medical information they think they might need, and yet you don’t necessarily want people to think of Down syndrome as an automatic reason for terminating a pregnancy, you have to come up with some delicate arguments; you can’t just go around saying that people with Down syndrome are Heaven’s little angels, sent down to us to make us all be nicer to each other, and you better not go around saying that God never gives people things they can’t handle. (Because, you know, He actually does that all the time. He’s really kinda mean that way.) At the same time, you know full well that even the most delicate argument won’t persuade people who think that having a child with Down syndrome is way, way more than they can handle. Those people aren’t necessarily blinkered or selfish, either. As one of Rapp’s interviewees puts it, “If I had this baby at 44, and it had Down’s, who would inherit it?â€? This is not a trivial question. Jamie was born when I was ten days shy of my thirtieth birthday, and I think about it approximately every day.
OK, I have two final things to throw into the mix. One, about the Globe and Mail header: Last month, breaking research raised the possibility of prenatal exams for autism. And MDs urged Canadians to expand screening for Down syndrome to all pregnant women. I’ll take the first one first, because it’s the easy one.
No it didn’t. At present, screening for autism is about as useful as screening for demonic possession: we still have no clear idea what “autism� is. And yet every time some “breakthrough� is announced, we fall for it. Just the other day, I received an email from someone who actually does autism research, and who informed me that this “breaking research� didn’t show any association greater than chance. “That is,� she explained, “it reported null results. Nonetheless, it continued to spark the brushfire of pro-prenatal screening discourse.� That’s why I’m so skeptical of screening, even as I support people’s right to it: there are some really insidious forces out there, overselling the value of prenatal screening and sometimes even saying not-entirely-true things about what screening can tell you.
Now for the second part: expanding screening for Down syndrome to all pregnant women. This kind of initiative, I suggest, starts from the presumption that (all else being, cough cough, equal) we’d be generally better off if we could “catch� Down syndrome in utero and prevent people with Down syndrome from being born. As you’ll see if you read my article, I ain’t buying it, because I don’t see the potential eradication of Down syndrome from the species as being analogous to the potential eradication of smallpox or cholera. But I also ain’t buying George Will’s recent response to the new guidelines of the American College of Obstetricians and Gynecologists, which recommend screening for all pregnant women. Because it’s one thing to be skeptical of the idea that screening should be mandatory, and opposed to the idea that screening should be a prelude to abortion; it’s quite another to insist, as Will does, that pregnant women do not have the moral right to make difficult decisions about their pregnancies:
Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.
In my Globe and Mail essay, I respond like so:
Perhaps. And perhaps the world would be a sweeter place if we acknowledged that prospective parents who choose not to bring pregnancies to term are actually making difficult moral decisions rather than engaging in “moral regression.” That way, we could try to persuade people not to abort fetuses with Down syndrome — or any other disability — rather than coercing them into mandatory childbirth regardless of the circumstances.
Now, I suppose it’s all right for George Will to speak of the “moral regression� involved in “the casual destruction of pre-born babies,� because, of course, Will has long advocated universal health care in the United States on the grounds that our current employer-provider system is devastating to people with disabilities, who have an unemployment rate somewhere around 60 or 70 percent. Believing that childbirth is mandatory regardless of the circumstances of the mother or the fetus, Will argues, entails the obligation to provide strong programs of public assistance for the people who are brought into the world as a result.
Ha ha! Just kidding. George Will emphatically opposes universal health care. In that regard, he’s just one of those compassionate conservatives whose concern for the pre-born manages to outweigh concerns for the well-being of the post-born. By contrast, Rayna Rapp argues for a pair of principles that we might very well call “family values�:
The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. The second is the need to support adequate, nonstigmatizing, integrative services for all the children, including disabled children, that women bear.
You know, when opponents of abortion try to corner the market on discourses of “morality,� sometimes it makes me kind of mad. And you know, sometimes when I think about what happens to people with disabilities in our health care system, from the vets in Walter Reed to the mentally ill folks wandering our city streets, I get so angry I positively want to curse. But I will not do so here, because Amanda has warned me that this is a very civil blog, and that if I say “@%*$ing� again she’ll take the keys away from me.
126 Responses to “Testing, testing”
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Oh, the topic synergy! Please read this article about prenatal testing to eliminate any gay genes in embryos by the head of the Southern Baptist Convention, and then allow your head to explode by way of a kick-ass smackdown. Pretty please?
Is your baby gay?
(obtained via Pharyngula)
Either that entirely didn’t work, or I’m about to double post. Anyway, the president of the Southern Baptist theological seminary just weighed in on how it would be good to do prenatal testing to eliminate gay genes in embryos. No kidding. Rip it apart, pretty please?
It may be that the linkage tripped up my post, so I’ll just plain text it:
Is your baby gay? What if you could know? What if you could do something about it?
http://albertmohler.com/blog_read.php?id=891
via Pharyngula:
http://scienceblogs.com/pharyngula/2007/03/finally_an_issue_that_gets_fun.php
After a blood test, I was told that I had a very high chance that I had a child affected by down syndrome and that I simply had to have an ultrasound right away!
Turns out that blood tests are only as accurate as the testing service’s ability to read a chart or listen to the mother who knows when she ovulated. The ultrasound “revealed” that I was two weeks earlier in pregnancy than the last menstrual period date.
Of course, I had been telling them this all along …
The first time I was a little shocked, but I knew enough about the test to ask what due date they based that conclusion on. The second time I only put up with the ultrasound because I wanted insurance-paid confirmation of dates (I’d had one sorta kindof period between nursing-induced amenhorrea and pregnancy).
Meanwhile, they started filling my head with “consequences” of down syndrome which I bloody well knew to be 1)extremely slanted and 2)dated. Never any statistics on prevalence of the extreme consequences - made them sound like they were certain fetures of the syndrome.
Maybe because I’d actually gone to school with kids with downs, considered them to be my friends and even corresponded with one after I went to college, I knew they were creeping into eugenics territory with their “information”. Furthermore, I realized that most of the “poorly functioning” children with downs in the past were far more damaged as the result of inadequate perinatal support for heart malformations that couldn’t be fixed or because they were essentially neglected after birth even if intervention was possible. Finally, our kids’ godfather works with developmentally delayed adults. His assessment: give me a house full any day!
So I went for the ultrasound and feigned suprise at the dates. I sent Zog off to the men’s room to do a diaper on our first “highly likely to be unfit for birth” child because the woman’s room in this maternity-focused practice had scolding info on the internal and external areas about diaper changing not permitted. The place was screamingly anti-family despite the clientele.Maybe the simply didn’t want anybody to have any children at all without their firm approval?
Fuck that.
Oh, the topic synergy! Please read this article about prenatal testing to eliminate any gay genes in embryos by the head of the Southern Baptist Convention, and then allow your head to explode by way of a kick-ass smackdown. Pretty please?
The fucked up thing about that article, besides every single other aspect of it, is that they’ve completely abandoned their “It’s not genetic, it’s a choice” stance in favor of “God fucked up, and we can fix it.”
Hypocrites.
Interesting article Michael. And I have known a number of people with Down’s Syndrome. They generally have a 0% asshole ratio as compared with the rest of the population. I won’t ask the obvious question about early pre-natal testing for Down’s.
That having been said, statistics show that 85% of Down’s children who are diagnosed in utero, are aborted.
But when people can be aborted for the “disability” of being unwanted, it doesn’t make any sense to prevent pre-natal testing. I wouldn’t like to see it mandatory, but I’d be willing to bend on this if you were willing to offer a sonogram to every pregnant woman contemplating an abortion. You know, giving the prospective mother more complete medical info. She’d have the right to refuse it, of course, but the offer would be required to be made.
Car, I’ve long wondered why there is all this focus on genetics when there doesn’t seem to be all that many biological children of gay parents who turn out gay despite their upbringing.
I’d be far more likely to target the practices of Big Ag and Big Chem mixing with latent expression of the existing genome (as I do for autism - and there is ongoing research). The whole “old genes, new environment” thing is complex and puts the onus on big business, and these wingnuts simply are not interested in something that can’t be blamed on an inferior individual, now are they?
Rip it apart, pretty please?
You think I can do that Albert Mohler essay any more damage than PZ’s already done? For that matter, you think I can do it more damage than Mohler himself? You flatter me, car, you do.
But yes, I admit it’s a remarkable thing, watching fundamentalists “do” biology. Why, it puts the fun back into fundamentalism! Hey, folks! Tell you what: let’s see if we can convince a bunch of ‘em that homosexuality is caused by an excess of phlogiston in the anterior homunculus of the developing embryo. Better yet: let’s see if we can spread the news of this “breakthrough” so far and wide in the Internets that Gregg Easterbrook will write about it in Slate.
The little experience I’ve had with Down’s syndrome seems to match Tony’s, i.e., 0% a**hole but quite open and outgoing. I am pretty much pro-choice across the board so hesitate somewhat to say much more. But I recognized at an early age that I’m fairly selfish and knew that having children was a minimum commitment of eigtheen years that could extend to the rest of my life and beyond. Which is why I’m single and childless in my mid-fifties…
I’ve known for at least 20-years that George Will has a son with Downs. I’ve always wondered what affect that fact had on him. (I’ve wondered about its affect on you, Professor BĂ©rubĂ©, as well…)
In Will’s case, it seems to have made him only more fanatical in his abhorrence of abortion, which I’ve always thought was “interesting”…
Difficult topic - we’ll try to make you proud, Professor…
I won’t ask the obvious question about early pre-natal testing for Down’s. That having been said, statistics show that 85% of Down’s children who are diagnosed in utero, are aborted.
I mention a similar figure (”between 80 and 90 percent”) in the Globe and Mail essay, Tony. What obvious question were you thinking of?
ou know, giving the prospective mother more complete medical info. She’d have the right to refuse it, of course, but the offer would be required to be made.
More accurate information, and money to get more modern numbers for adverse birth outcomes given down syndrom status would be a great start. The scare tactics used for many parents are horrendously misinformed.
I had as much information or access to it as a then-graduate student in epidemiology could have, as well as personal experience with people with trisomy 22, and I know I would not have aborted such a child. Prenatal diagnostics would have simply ensured birth in a hospital with a top-level nursery to support the common comorbid malfomations and give the kid a great shot at a great life.
I can’t find the article, but there was a piece in a local paper last year about a high school prom where the prom queen was a vivacious, college-bound woman with Downs and her date was the captain of the football team whom SHE asked out! Quality of life anybody?
As more and more genetic markers get found and testing can occur at earlier and earlier stages, more and more people will confront this decision.
Couples will make the decision based on whether they feel termination at that point “destroys a human life” or only the potential of a human life, the expected severity of the disability, and the estimated burden on them.
My prediction is we will find less inclination to terminate for a physical disability (unless disabled to the point of a short, pain-filled life), and more likely for mental and (perhaps) behavioral abnormalities.
It will also boil down to how accomodating the surrounding culture is to people with disabilities and how able it is to incorporate them into the ecology/economy. I can think of potential future societies (in a space colony, for example) where the possibility of producing a child that would not be able to contribute to the continued survival of the colony (and who might be an actual danger if allowed to run loose) would be definitely frowned upon.
Although discussions will be couched in terms of ethics and human rights, in practice, a culture develops the ethics it can actually afford.
If irony weren’t dead, I’d say that the increase in abortions resulting from the confluence of genetic testing and the obstacles to research involving fetuses imposed by anti-choice wingnuts was ironic. Almost 30 years ago, for example, researchers at the NIH developed techniques that bid fair to eliminate somewhere between most and all of the brain anomalies associated with Down Syndrome. Then the Reagan administration decided to stop funding work tainted by any association with abortion. Same for work on a bunch of other therapies aimed at various fatal or horribly debilitating congenital conditions.
Result: prospective parents who had a family history of these conditions were more likely to abort if a pregnancy occurred. Ditto for those in whom genetic testing revealed anomalies.
(The whole testing-for-gayness and testing-for-autism baloney, meanwhile, reveals just how little we actually know about the genetic basis of almost anything interesting, and coincidentally how flexible so many wingnuts’ morals are when they see even a tiny chance for tactical advantage.)
P.S. I’d like to add that it’s interesting we’re seeing a collision here–the ability to detect Down’s at a earlier and earlier point, while at the same time we are able to do better and better for the people who have it.
And I’d like to give a great shout-out to “The First Wives’ Club” (the book, not the movie.) One of the heroines has a daughter with Downs syndrome, and is a very important character in the book in her own right. The description of her as someone who never loses her sense of thrilled discovery about the world around her….well, it really made me reconsider my stance on what I would do if it were diagnosed in utero.
Hi, weekend Pandagonia! And welcome to my first “real� post as a member of the weekend team. This one clocks in at well under 20,000 words, in part because I have sneakily written some of it elsewhere.
OOOOh, look HOW big MY dick IS !
One possible explanation for the lack of date demonstrating transmission of “gayness” genetically is that the few studies suggesting “gay genes” are extremely limited and still not accepted as science. The origins and explanations remain open for debate, so the absence of genetic transmission tends in the direction of the non-genetic explanations.
and a noticeable portion of pre-natal testing is by people seeking “designer abortions” ie. to eliminate viable children who have problems. Very bad for career paths!
Paul — the “testing for gayness/autism” is very important irrespective of one’s politics. With any issue or medical condition, whether it’s genetic or environmental is the grand question. The absence of clarity on gayness has a lot to do with peoples’ views on it, not just “wingnuts.” If a condition (autism, down’s, gayness, etc.) is environemtnal we can do something about it if society feels it should be done. If genetic it clearly isn’t volitional or correctible other than genetically.
So ideology shouldn’t blind us to the necessity of the research. If gayness turned out to be volitional/environmental, where would this blog go?
If gayness turned out to be volitional/environmental, where would this blog go?
I presume it (and its contributors) would go on saying there is nothing morally wrong with gayness. Because there isn’t.
Next question?
As a person fascinated by playing with left-handed monkeywrenches, i might as well throw this one into the mix. Being the sort who spends part of late Friday nights watching the replays of various university lectures on the educational access channels, i surfed onto one that seems now (naturally) to be quite synchronicitous. Disclaimer: i missed most of it, and did not choose to watch all the rest either, but that isn’t as important to this discussion as does the part i did give due and diligent attention.
The lecture was being presented by a University medical research professor, who was deeply concerned with some recent findings she, and her colleagues and grad students, had discovered about a specific genetic disease. She had been able to track six generations of different families who exhibited a genetic defect that would lead inexorably to great suffering and death. What surprised and saddened her was that with each subsequent generation the disease manifested itself, at earlier and earlier stages in life. Those in the first generation contracted the symptoms and signs during their 50’s and early 60’s, dying in their 70’s (and one in his 80’s). Gen 2 however acquired the symptomology in their 30’s, dying in their 40’s. By Gen 5, the genetic disease was manifesting in children under 5, with death at 12-17; and the first Gen 6 case was born ill and died before their fourth birthday. Two more Gen 6 births revealed the disease, one killed in vitro.
I missed what the disease is, and i didn’t stay with it long enough to find out how this was going to be treated. Given this post thread, i know feel obligated (almost) to wait for a replay and pay full and necessary attention. However, given this issue, it seems that the future requires us to encourage those who have familial history of genetic markers for certain diseases to use screening technologies. Informed decisions are the best decisions (obviously intentionally misinformed deciders are the worst–see Iraq?).
I found an article akin to what Ms Kate mentioned - Prom Queen with Down’s. Interestingly, at this school, the prom King was gay too. I have the link here: http://www.nctimes.com/articles/2006/05/30/news/californian/52906192749.txt
but for some shameless self-promotion, I have a couple short thoughts on it as well at my new blog, just started last week. Enjoy: http://femanist.blogspot.com/
Nolo - that’s not he point.
If gayness is genetic, the person who is gay is a function of nature. If a choice, well..it’s a choice. Explaining/defending a choice is a different proposition from explaining/defending a genetic destiny. More particularly, it makes the ones bothered by it (for whatever reason) less demon-worthy and makes it more of a debate than an adaptation to a genetic inevitability.
For those who want to be gay or like being gay, whether by hoice or by destiny, it is irrelevant, I agree. To those who are indifferent, I also agree. But to those bothered by it, their position is enhanced if it’s not genetic, and diminished if it is.
“For those who want to be gay or like being gay, whether by hoice or by destiny, it is irrelevant, I agree. To those who are indifferent, I also agree. But to those bothered by it, their position is enhanced if it’s not genetic, and diminished if it is.”
Why?
Being an Episcopalean is a choice. Doesn’t make it fairer to discriminate against.
That’ll teach me to have swapped names. Damn. Um. That was NOT Ann Althouse.
f gayness is genetic, the person who is gay is a function of nature. If a choice, well..it’s a choice. Explaining/defending a choice is a different proposition from explaining/defending a genetic destiny. More particularly, it makes the ones bothered by it (for whatever reason) less demon-worthy and makes it more of a debate than an adaptation to a genetic inevitability.
And the last I noticed, it was SOCIAL retardation, not individual affect that prevented gay people from fair employment, housing, and marriage rights.
In other words, being Gay does not disable the individual. There is no harm in being gay save being harmed by those who have problems with people being. If there are costs to society, those costs are the result of ignorance and discrimination by others, not the intrinsic gayness of the person.
I do kind of wonder what the purpose of pre-natal “gay” testing would be (other than fundies preserving their perfect holy families, of course).
Then again, if it’s something that exists in utero, then the sky fairy must think it’s okay. If the sky fairy said it’s okay, does that mean they’re allowed to love their children, even if they’re TEH GAY? I think my imaginary fundie brain just broke.
Or, alternately, I suppose one might want to put a little more effort into decorating the nursery for a gay baby. I was going to say something about making it easier to choose what activities the parents would involve their kids in, but really it’s probably better if the parents actually let the kids play the sports they want to play (or not), anyway.
Or, alternately, I suppose one might want to put a little more effort into decorating the nursery for a gay baby.
Actually, don’t bother. BabyGhey would shriek at you about how atrocious your taste was as soon as “it” could talk.
[/fun with lame stereotypes]
Those “bothered by it” have an extremely pinheaded understanding of human sexuality, so why cater to them by doing a shuck-and-jive about It’s Not Our Fault, It’s Our Genes?
and you better not go around saying that God never gives people things they can’t handle
Not unless you are interested in tempting the speaker to inflict something awful on you–because, y’know, God wouldn’t let it happen to you if you couldn’t HANDLE it.
Dear “Ann”: Everyone “discriminates.” If disliking people for whatever reason or preferring one person or group over another were criminalized, the prisons would be glooded ,and most on this blog would be in the flood.
Discrimination is natural, inevitable and central to pretty much every known culture. There are two “moral” variables to the discrimination though: 1. Do you merely dislike the person because of X, but not act against them in any way in employment, etc (let along violence), 2. is the thing/look/phenomenon against which you discriminate something about which the person can do nothing or little (ie genetic) or is it a choice?
People are entitled to be uncomfortable about gayness for whatever reason. They are entitled to prefer not to associate with gays, or Jews, or elite snobs, or extremist fundamentalists, or Yankee fans. But they are not entitled to harm because of it or play with job status etc.
When Coulter said faggot the other day, most of the posts here though it invidious because of a belief that being gay is not a choice, so even this blog draws the moral line in part on volition.
By the way, affirmative action is a unique combination of racial/ethnic profiling (ie blacks and hispanics are inherently and collectively more valuable than Jews or Asians or impoverished white male) combined with an intent to discriminate in favor of the preferred class and against those in the unpreferred class. And race/enthicity are genetic, so it’s a peculiar form of “moral” discrimination.
One of the things we know from pretty much all studies of interesting genetically-based traits is that the final expression of a trait is a result of an interplay between genes and environment. (On a really simplistic level, there was a study that went by a few weeks ago on ScienceDaily, where someone showed that a genetic chance shown to give mice horrific heart disease and other problems did nothing of the sort if you placed the mice in an environment where they got much more exercise than lab mice usually do.) Some researchers have even speculated, for example, that the same sets of alleles that are supposedly associated with homosexuality today would be associated with incurable lack of same-sex attraction in classical Athens, and vice versa. All of the genes supposedly associated with addictive behavior explain only a fraction of the actual variance in addiction among sampled groups.
So trying to set the discussion up as genes vs choice is just crap. And the crap leask out around the edges when you see the same people suggesting that some people (e.g. those with ostensibly violent or addictive traits) should be denied opportunities based on their genes while others (e.g. those with the from-a-distance more sympathetic disabilities) should get special positive treatment because of theirs. None of it is that simple.
Thanks for this post, Professor! My older brother and my younger cousin both have moderate to severe cognitive/neurological disabilities, though neither of them has Down syndrome. Just as I don’t think there’s any inconsistency in a childfree person wanting to improve conditions for working mothers, I don’t think it’s inconsistent to decide to abort a fetus because of a disability *and* work for disability rights for the “post-born,” as you nicely put it. What *is* the problem is when the individual choice of whether or not to bear a child is used as a strawman by anti-choicers to argue that all pro-choicers are eugenicists.
This is tangential, but I wonder how much the public image of Down syndrome as a well-known, visually identifiable disability plays into this debate. When I was growing up, if I told people my brother was disabled, they always (if they hadn’t yet met him) initially assumed he had Down’s. There’s definitely an idea that people with Down’s are sweet little angels sent here to make us all appreciate humanity by working minimum wage jobs in our neighborhoods. I agree with other commenters that the asshole rate among people with Down syndrome is significantly lower than among “normal” folks, but isn’t this at least to some extent a survival technique? “Retarded” people of all sorts get treated like shit by most people, and they don’t always have the resources to fight this; just as we lady-folk have to be “civil” in order not to get yelled at, it has always seemed to me that people like my brother have to be “sweet” in order not to get pushed around.
Wow. Thanks for the great essay. Prenatal genetic testing really is a gray area. We really have such a poor health care system in the U.S., that people with significant disability are in a very precarious situation when a caregiver (such as a parent) dies or cannot function. Since I’m pro-choice I believe it is the woman’s choice to carry on with her pregnancy or terminate, whether or not I agree with her decision or not.
Explaining/defending a choice is a different proposition from explaining/defending a genetic destiny.
As I think some aspects of this discussion make clear, not really. I suppose for some people the idea that gayness is a “natural” form of human sexuality helps make gayness seem less perverse to them, but that’s actually pretty sloppy reasoning. After all, there are all sorts of conditions that are perfectly “natural” variations in the human genome that we consider very undesirable and are trying very hard to eradicate. That’s why I’ve always been queasy about the “gay gene” argument for accepting gayness — it plays just as easily to the argument that gayness is a disease to be “cured” as it does to the argument that gayness is a natural variation that we should accept.
The only objection I can ever comprehend towards prenatal testing is the fear that medical insurance companies will somehow get to start instituting policies where they refuse coverage of a pregnancy that has shown test results indicating a disabled fetus. That seems somewhat reasonable an objection to me. No other objection seems even remotely sustainable to me at all.
Well Nolo, as a gay agnostic (meaning the subject isnt on my radar screen), I agree with you. By getting into the argument of genes/choice on gayness, gays set a trap as do the scientists who delve into it (inconclusively, from what I gather).
If gayness turns out to be genetic, I doubt you’d - as a practical matter - see much research into “curing” it. I think you’d see something more distrssing — prenatal testing that results in abortions of gay foetuses.
Science is almost always the double sword dilemma. The itneret is a miracle (voila this brilliant discourse online) and is the best tool ever invented for spreading the risk of nuclear terrorism. Pre-natal testing is the same — as more “infirmities” or undesirable traits prove to be genetic, the more the pro-coice world creates a cicumstance to kill of gays and others.
Irony and the law of unintended consequences have a way of permeating everything.
you know it but to head of the smarmy sarcastic ones:
distrssing = distressing
itneret=internet
coice=choice.
I see Berube stalking here so had to correct this.
Everyone “discriminates.�
Oh look, the people who were rules lawyers in D&D have all grown up and started blogging.
As you well knew, “discrimination” in this context is shorthand for “invidious, morally wrong discrimination”. We’re not talking about the sort of discrimination whereby you decide that a linen suit is a better choice than one made out of cheap polyester.
People are “entitled” to have whatever idiot beliefs they wish; the rest of us are equally entitled to point out they are idiots and to cricitize them for it. Free speech cuts both ways.
When Coulter said faggot the other day, most of the posts here though it invidious because of a belief that being gay is not a choice, so even this blog draws the moral line in part on volition.
Nonsense. The condemnation Coulter got had nothing to do with whether sexual orientation is based in genetics, in-utero hormones, environment/experience or personal choice — it had everything to do with right-wing bigotry against gays, as evidenced by Coulter’s practice of using homosexuality as an insult doubled with her use of an anti-gay slur.
Whether discrimination (personal preference type, not employment or violence, etc.) is invidious depends to some extent on whether something is volitional or not.
People who have a problem with gayness aren’t all idiots. They have views across a wide spectrum. As long as they don’t mess with employment or other basic rights, their “discrimination” in terms of personal preference is inevitably going to be “morally” affected by whether gayness is genetic or choice.
I personally find tattoos and piercing repulsive. Those are choices by those who have them. As long as I don’t mess with hire/fire decisions (though interestingly, those aren’t protected classes so you can discriminate), I can choose to avoid them and find them unattractive and say so. If people were born with piercings or tattoos, it would be mean, in the same category as disliking for birthmarks or general ugliness.
I have friends with gay children who love and support them. They’d much prefer that their kids were straight. If it were choice not genes, it would affect a lot of people, and if genes, discrimination or distaste or whatever you call it comes closer to invidious.
PS — I don’t know what a “rules lawyer in D&D is”, sorry. Whatever it is, Im not one.
“I see Berube stalking here so had to correct this.”
Berube made the blood post.
Anyway, your argument still doesn’t hold water, but I’m going to stop contributing to your derail.
Oh, and blood = bloody.
Courtney, I can’t speak for the world, but if you look at the postings on Coulter, you find the anger based on the distinction of choice.
And rightwingers aren’t anti-gay bigots. Some are. And whether people following 5000 years of anti-gay religious teachings (in every culture — every single culture) are bigots is a pretty facile generalization.
I find the religious position on gays to be weak, boring, but it doesn’t mean they are all bigots.
Anyway, I stand by the fact that the commenters here found Coulter invidious because of the genes/choice distinction.
Mandolin — thanks, I was about to look for the blood post.
Well Nolo, as a gay agnostic (meaning the subject isnt on my radar screen),
For someone who doesn’t have the subject on your radar screen, you sure seem to be spending a lot of time on it.
Pre-natal testing is the same — as more “infirmities� or undesirable traits prove to be genetic, the more the pro-coice world creates a cicumstance to kill of gays and others.
This is just silly. IVF presents the same kinds of risks — i.e., people selecting for certain traits in their progeny — but I don’t see you getting worked up over advances in fertility treatments.
Somesuch: Professor Berube is not BOASTING of his lengthliness (post-wise); he is MOCKING himself for this trait.
Homestly, you couldn’t have made yourself look more a fool than you did with this ignorant comment. I have done the same in my time: it is a good idea to read a blog for a while before you begin commenting.
[blockquote]anti-gay religious teachings (in every culture — every single culture) are bigots is a pretty facile generalization.[/blockquote]
Do we really need to start with this? Homosexuality wasn’t considered a “thing,” as in an actual trait, until the 17th century. Before then, it was just individual acts you made, like eating a sandwich or whatever. If we’re going to pick a place at random, let’s pick Ancient Greece, the ostensible origins of Rome and therefore of all things right-wing. A man then would have been looked down on if he slept with so many men he couldn’t sleep with his wife (and thereby have no children), and as for women, who the hell cared, as long as they were ready when TEH HUSBAND wanted them. Other than that, you know, have fun.
Yikes. Yes, I realize one doesn’t “make” “acts,” and that’s only the most egregious of several errors of mine above. Sorry, folks, too much coursework, not enough brain cells.
Drift aside, this is an interesting topic. One of the central problems facing any discussion on it is the value placed upon an embryo/fetus. The less value placed, the less of a dilemma this subject is. In any case, there seems to be two questions that follow. How does having a positive result (meaning the child will have Down/autism/etc) on a test effect the value placed upon the embryo/fetus? What are the changes in cost that said value is going to be measured against?
I think it would be very difficult to get beyond something arbitrary in answering these. Perhaps even impossible. I don’t see how mandatory testing would really serve any purpose aside from irritating people. Simple always having testing available I think would suit most everyone except people wishing to meddle.
And I should probably clarify that sandwich thing.
Say you like sandwiches. Back then, it didn’t mean you Liked Sandwiches, you just… ate them occasionally. If you ate them all the time every day it wouldn’t be good, but every now and again, go for it.
I also realize they didn’t have sandwiches, per se. Aeneas’ stupid bread-table pizza thing, then. Except that he wasn’t Greek. Well, this analogy has fallen to hell, but you get the idea, I hope.
“If we’re going to pick a place at random, let’s pick Ancient Greece, the ostensible origins of Rome and therefore of all things right-wing. A man then would have been looked down on if he slept with so many men he couldn’t sleep with his wife (and thereby have no children), and as for women, who the hell cared, as long as they were ready when TEH HUSBAND wanted them. Other than that, you know, have fun. ”
Totally. And there have been plenty of other cultures that didn’t preach against homosexuality too.
It’s kind of like when people say “everyone has always defined marriage as between a man and a woman” — please ignore all the people in different places and at different times behind the curtain.
*
I don’t want to see this thread get completely derailed. I imagine it must be frustrating for people who are disabled who are reading this to see yet another thread about disability rights turn into yet another thread about some other kind of discussion.
I particularly appreciate Berube’s endorsement of this statement:
“The first is the need to champion the reproductive rights of women to carry or refuse to carry to term a pregnancy that would result in a baby with a serious disability. The second is the need to support adequate, nonstigmatizing, integrative services for all the children, including disabled children, that women bear.”
D — you are eminently sensible .Careful or you may be ejected for moderate reasonableness!
Berube raised some very interesting issues (particularly in view of his rare and assuredly painful deicsion to keep below 20,000 words) and these threads just follow the fascinating implications starting from the core technology of pre-natal testing.
Nolo - I find gayness and related subjects boring. But I find the implications for testing/genes v. environment issues fascinating in the gay issue context. Pro-gay zealots such as you along with your anti-gay zealous counterparts face a complex Hobson’s choice among your pro-life vs. pro-death, pro-gay v. anti-gay, pro science/prenatal testing v. anti-reaearch, gays are born that way versus gays are by choice views.
People can discuss a subject for an array of reasons Nolo.
Mandolin:
You’re right on the value of the debate raised by Berube. No one seesm to be censoring that. But it simply raises other issues.
You’re incorrect, in large, on the cultural history of marriage and gays. There are people in New Caledonia who worship refrigerators after all, so you have a point. But it’s a small point. Gay marriage is a very recent, very very recent, mutation of an ancient line of cultures favoring and uniquely-defining marriage as male-female. And abhorrence/hostility/simply being bothered by homosexuality is ancient as well.
The poin isn’t the year in which the particular cultural view started. The point is thta a radical new idea running against a current of long-standing, widespread multicultural assumptions has the burden of proof, and those who oppose the radical new idea aren’t necessarily bigots.
I have some personal knowledge of how the whole Massachusetts gay marriage movement finally succeeded, and it wasn’t by name-calling, but rather by distinguished, laudable men who happened to be gay quietly carrying out a multi-year dialog with friends of theirs who happened to have governmental and judicial power.
Sorry for helping derail the place off on gayness, but back to the original topic of testing, I think it’s a very slippery slope to start requiring pre-natal testing for various things. Voluntary, fine, but mandatory? Nope. The only problem with “voluntary” testing is that it could quickly go downhill to insurance companies not covering babies born with traits that could have been tested for before birth, so it becomes de facto mandatory. I can see that getting really ugly really quickly unless there is enough pushback against it.
I find gayness and related subjects boring
Yet you’re willing to talk about them at length, especially if it derails the thread.
The implications of a ‘gay gene’ that doesn’t exist are neither fascinating nor new–the people who believe homosexuality is a moral wrong are not going to say “Okay, abortion is murder unless you’re killing an unborn gay person”. And the faux-lifers like to point to the disabled as props: see, God even wants THOSE deformed freaks born instead of being killed by their mothers!
Michael, I particularly appreciate your commenting on the Ray of Light mentality. It’s one thing entirely to insist on balanced, straightforward information rather than telling parents disability means their child is better off never born; it’s another thing to go in the other direction and insist that anyone who would hesitate at having a child with a disability is an ableist loser who simply isn’t appreciating the miracles of all God’s children.
As long as Insurance Companies make people’s decisions for them (by virtue of holding the purse strings) the slide into universal required testing is inevitable.
If you try to get health insurance now, they will test you and quiz you in order to reject those not “up to snuff”. Think of the fetus as a “pre-insured person”. If they can eliminate the ones they feel will be a problem later (regardless of what the problem is) the Company’s expenses will be lower, profits will be higher…
Until there is Universal Healthcare (with strict no-rejection rules in place), this will become a bigger and bigger problem until some crisis forces Americans to re-evaluate their priorities…
Great article, Michael, thank you.
Funny how George Will didn’t care enough about his son Jon to stay with Jon’s mother, choosing instead to, like many other conservative men, leave her for something younger and presumably prettier. But he’s perfectly willing to trot his son out when it’s convenient, unlike you. Your pride in your son AT ALL TIMES is what we would hope all fathers have for their sons, and everything you’ve written about Jamie tells us that yes, your son really DOES rock.
Heavens, there’s no discipline to these threads. By that standard most would be terminated by the fourth extraneous posting. If you don’t like what I say, just show a little finesse and change back to the train of thought you prefer. No need to insult.
As for MikeEss comments on insurance, you confuse goverment insurance with private. Private is a business, they do what they wish. I’m very familiar with the industry ad suggest that your speculation on motives is incorrect. Those who requrie testing do not do so to snuff out undesirables.
Insurance is based purely on risk distribution principles that are heavily mathematical, not conspiratorial. And everyone has the choice to self-pay or avoid a test or change insurance.
As for the exclusion of “pre-existing” issues, that’s part of the math and rate control process. It is avoided by those in group plans or government plans. You are correct that it is a painful thing for those who aren’t. But no one has come up with a viable plans for that yet.
I have family living under the French and Canadian and English health systems. They cover in principle by admitting everyone ,but they are brutal in terms of the benefits offered. They are horrible plans. So the “no free lunch” pricnciple is the problem, not evil
I agree that these two things are profoundly interrelated–so much so that I would say (for myself) that having federal assurance concerning the second criteria would influence my decision about whether I would carry a baby to term or abort it. If my unborn disabled child was guaranteed the right to adequate, nonstigmatizing, and integrative services at affordable prices, then that assurance would make a world of difference in terms of options.
When I was in elementary school in Canada, our school began a semi-integrative program for the disabled. The disabled kids had their own classes and teachers, but we were encouraged to become their “buddies” at lunch. If you became a “buddy,” you also got to do cool things like go rollerskating with the disabled.
Anyhow, I started volunteering. What I noticed, even as a nine year old child, was the profound physical *neglect* that many of these kids suffered. You could readily distinguish between kids who lived with “real parents,” and kids who lived at state-run homes for the disabled.
The kids who lived with their biological families generally had nicer clothes, hot lunches, and more developed social skills. My buddy did not live with her parents, and often came to school in dirty clothes that her teachers commented on and changed. When I first started volunteering with her, she seemed very dejected and could barely raise her head. She had this elaborate sign-system on her wheelchair that she never used. Over that year, we slowly bonded.
I suspect it was one of the first times in my buddy’s life that someone (a school, another child) had taken an interest in her. She started recognizing me and responding with smiles or raising her head when I was around. We started to communicate on a basic level with her sign board. She seemed like a sweet person, and I wondered what her personality would be like if she could talk and interact without disability. It seemed to me that a big *part* of her disability was the lack of positive social contact she had with people outside of the school day.
I was worried about what would happen to her over the summer; it just seemed like the environment in which this child regularly lived was so abject compared to what she was getting at school. Our province went into a recess in the following years, and this integrated program was cut; actually, the whole school was closed and we were bused out to other schools in the city.
Anyhow, given the severity of this child’s disabilities, I would want–as a parent–some contractual assurance of support from the government. I can understand why some parents cannot take care of a child alone, but don’t see how having a disabled baby and then leaving that baby to fend for itself in the system is better than aborting it…
Sorry to distract — is it true that you censor on this blog? A friend of mine (hardly a troll type) said they posted a few times here and people disagreed with her and then all of a sudden her postings didn’t go through. I read them and there was no obscenity or name-calling.
So do they censor or block people here?
Chris, I’m sorry you feel insulted when your inconsistencies and nonsense are pointed out rather than swallowed whole.
Funny how George Will didn’t care enough about his son Jon to stay with Jon’s mother, choosing instead to, like many other conservative men, leave her for something younger and presumably prettier.
Jill, that’s totally unfair. As Will points out in his column, the risk of Down’s increases with maternal age. He was just selflessly making sure that his other children would have the best chance possible at being born healthy!
Here at Pandagon, they only defenestrate people.
http://en.wikipedia.org/wiki/Defenestration
Just kidding. I don’t know.
However, I have certainly posted some obscene language *and* some controversial views (regarding Ann Coulter most notably) without being censored. I *was* incessantly mocked and chewed out over hot coals for my comments, but no censorship…
(Except for those letters I sent to Pandagon while living in the Soviet Union. The letters all came back to me unsent, with large sections blacked out. I blame the Russians, not Pandagon).
People are banned from commenting here for being excessively reasonable? Gracious. You’d think I’d have noticed the monkeys flying out of my ass.
Hi again. I thought I’d get back to stalking my own blood post!
This is tangential, but I wonder how much the public image of Down syndrome as a well-known, visually identifiable disability plays into this debate.
Laura, this has gotta be among the least tangential points raised in this thread, so thanks for that. Besides, it’s a great point. I can think of one obvious way to respond, by pointing out that as people with Down syndrome become more visible in the culture, they themselves will help to change the nondisabled population’s collective sense of what it means to have Down syndrome. But I think you also raise a deeper point, namely, that Down syndrome is often represented almost as a symbol of mental retardation in general, because it’s the most “legible” example of retardation. And I’m willing to bet that when people think about prenatal genetic screening, they think about Down syndrome first and foremost.
a noticeable portion of pre-natal testing is by people seeking “designer abortions� ie. to eliminate viable children who have problems. Very bad for career paths!
Oddly enough, Mr. Wilson, the combined length of your thirteen comments now exceeds the word count of my initial post. So I’ll tell you what. Since (to judge by what you’ve written thus far) you know so very little about prenatal testing, why don’t you give the poor Internets a break for a couple of days so that you can read Rayna Rapp’s book on the subject?
Funny how George Will didn’t care enough about his son Jon to stay with Jon’s mother, choosing instead to, like many other conservative men, leave her for something younger and presumably prettier.
TouchĂ©, Jill, and can you just imagine how primly outraged George Will would be if we got all Catholic on him, and started inveighing against the “moral regression” entailed in divorce? Particularly when children with disabilities are involved? I have a funny feeling we’d get a lecture about how people should be able to make such decisions about their private lives without interference from the state.
Except that getting married is choosing to involve the state in your private life…oh, never mind. No point in applying logic to George Will.
Now now Mr. Berube, there you go playing Bill O’Reilly again.
Having gone through prenatal testing with three of my own children as well as dealt with some of the legal/ethical implications of it on a professional basis, it’s true that my experience may not be the same as yours.
But then again, if one screened people here based on knowledge of the subjects they address, it would get pretty quirt here wouldn’t it?
Sorry for having dicussed aspects of this other than those that interest you. I really feel pretty badly about it. My “humble” apolgies, if you know what “humble” means.
Chris Wilson, I’ve worked in the Medical industry, and heard a lot of horror stories about Health Insurance providers, HMO, etc.
“Private is a business, they do what they wish. I’m very familiar with the industry ad suggest that your speculation on motives is incorrect. Those who requrie testing do not do so to snuff out undesirables.”
Sorry you buy into industry propaganda, but as you point out, they are private businesses and have ALL the incentive in the world to screen out undesirable patients. No laws exist to compel them to cover people regardless of existing problems - so they don’t if they can avoid it. (it’s interesting you chose to use the phrase “snuff out”…)
“Insurance is based purely on risk distribution principles that are heavily mathematical, not conspiratorial.” - Absolutely correct. However the mathematics most important to such businesses have to do with profit margin…
“And everyone has the choice to self-pay or avoid a test or change insurance.” - Here’s where things break down. “Self-pay”? Neither I nor anyone I know are in the top 1% who could handle those bills. “Avoid a test” is asking to be dropped. And If one insurance won’t take you, the others probably won’t either (same actuarial tables…)…
You called?
:)
Hahahaha - that’s a really good one. Try being poor, or too sick to work, and then come back and tell us about all the choice you had to self-pay or change (/get) insurance. Also let us know how avoiding the tests you need served your long-term interests so well.
Also,
I’m starting to think that this kind of argument has become more common in direct proportion to the fundies’ rise in power. Our culture seems to have been pretty well assimilated into the notion that ‘bad’ = ‘must be criminalized’, and that criticism inherently = the desire to criminalize. Here’s some news though: not everyone wants to see people with opposing views locked up. Just some people, and frankly, those people are generally bad. Which statement doesn’t mean I want to send them to jail.
“Sorry for having dicussed aspects of this other than those that interest you. I really feel pretty badly about it. My “humbleâ€? apolgies, if you know what “humbleâ€? means.”
(troll transformation accelerating…)
Chris, Mr. BĂ©rubĂ© has many admirable traits, and if I had to choose between you and him, I know who I’d rather vote off the island…
MikeEss, it’s especially irritating when you realize that the cost of those procedures is driven in part by insurance. It’s not as though the market price of a test is, say $100, and you can either pay it out of your own pocket or have it paid by insurance. Insurance companies bargain with service providers for what things will cost–what insurance companies will reimburse–and you, as Mr. Paying Out Of My Own Pocket, do not have that bargaining power.
Chris knows all this, of course; he’s just more interested in issuing pronouncements and jousting than actually getting into a fact-based discussion.
Someone mentioned the age of the mother as a predictor of possible birth defects but I also recall reading a news article in the last month or so that mentioned studies showing the father’s age is also a predictor. Just throwing this out for discussion. Of course, we never see much discussion over the older man/younger woman as this is the male’s divine right. Right?
MikeEss:
Just a few points. We don’t seem to disagree, we just seem to have different emotional responses to the facts.
I merely meant — and accept — that insurance is a business. Very stark and simple. And the issues regarding the uninsured, where I share your emotional reaction, are real. But Clinton campagained on the promise of fixing it in ‘92 and then nepotized his wife and Ira Magaziner. Hillary and Ira are very arrogant Ivy elitists, and she attacked the people whose support was essential to reform. Magically, they ate her alive in revenge.
Any major issue that fails in Washington usually takes a 10 year breather before it can be discussed again. Romney is the only candidate who has matched talk with results on the subject. I don’t know if his Mass. plan is good or financially viable, but it sure got a lot of people covered quickly.
Edwards’ plan is not viable. Clinton has no plan, nor does Obama. I haven’t cheked on the Republican side but would feel very confident in Giuliani[s ability to do a great job on it, but do’nt know if he;s there yet.
So we are where we are. But you can’t rail at a private business for failing to perform a public function. It’s inherent in their structure. And to be sure, there are no conspiracies, they just weed out unprofitable people.
Which is why we need something ofr the uninsured, and which is why it’s a crime that people get diverted by abortion, gay issues etc instead of pressing the parties with a focus to push for healthcare, which affects more people than those issues combined.
mythago,
one person’s thoughtful opinion is, to those who disagree and aren’t accustomed to disagreement, the other person’s “jousting” or “pronouncement.”
OK, with all my offtopicness out of the way:
Genetic testing is one of those subjects that just humbles me in terms of its grey area-ness. Whereas a lot of political debates can kind of be easily divided into Asshole v. Not Asshole (like, um, homophobia v., um, not homophobia), completely opposing views towards prenatal testing can be reached in good faith not just from compassionate and thought-out beliefs, but also sometimes from the same beliefs weighed differently. I used to work for a woman with multiple severe disabilities; she was born before genetic testing, but her parents were told by doctors to just not treat her ailments and let her die in her first years of life (which I guess could crassly be described as low-tech fetal screening). Her experiences made her, understandably, of the mind that anything resembling eugenics simply cannot be justified or allowed, including aborting a fetus because of abnormalities. Thing is, I never asked her how she reconciled that view, which necessarily supported restricting abortion rights, with her also being staunchly pro-choice.
Very rambly little comment here, I guess. If I have a point, I guess it’s that even though there are assholes like George Will who contradict all over themselves (and seem to be doing it just to be assholes), this is one subject where even when I disagree with people, I still more often than not am in agreement with at least one of their premises.
First!
Geez, this whole issue is like opening a can of worms where each worm is clutching its own opened can of worms.
I generally believe that people should have as much information as possible available when making major decisions. But mandatory prenatal testing for disabilities makes me uncomfortable. Of course, as Ms Kate relates, even voluntary testing can be fraught with inappropriately pushy people. So perhaps it would be possible to vigorously discourage such recommendations. Test results could be discussed with one’s trusted family physician, or some other selected counselor, in a separate context. Ignorance is not bliss in this matter. In a mandatory system, those with the material and pyschological wherewithal to provide a good home for such children would have to wrestle with the choice instead of having it made for them, but that’s probably a small price to pay to make sure that those lacking the wherewithal don’t find themselves “trapped.” And insurance companies should likewise behave themselves on this issue; they could just as easily abuse the results of voluntary tests as mandatory ones.
There, that’s my attempt to rationalize this out. Yet I still feel uncomfortable. Perhaps it’s just too viscerally reminiscent of eugenics, even though it needn’t be that way.
Oh, and isn’t it true that this site engages in censorship, thereby violating my First Amendment rights? Also, my comments are sometimes held in moderation for a while, based purely on their contrarian content, and I have a series of screen shots that proves it. I think it’s evident from this, and from virtually every comment thread, that no dissenting voices are permitted here.
Hi defenestrated. I inquired about your name on the previous thread, and Chris Clarke told me it had something to do with Prague…
Anyhow, it may be interesting to explore the connections between this post and Amanda Marcotte’s post on disabilities to occur later in life.
Conservatives rail against aborting unborn babies who may end up disabled, yet seem perfectly willing to send young people into environments where the odds are extremely high that they will return home disabled.
In each case, there is a pre-emptive logic/rhetoric: 1) we must protect the unborn; 2) we must invade Iraq and establish democracy there before they invade us. Ironically, however, once the “unborn child” becomes a real child, and once the “defenders of freedom” come home badly mangled, those who “supported” them back in the “embryonic” stage no longer seem to give a crap.
Supporting the unborn and supporting the troops seem to come out to the same thing: we need economically and politically disenfranchised babies to be born so they can grow up, join the Army in the hopes of improving their lot, and then get their asses kicked. I don’t mean this is a deliberate conspiracy, but the odds are pretty good that the soldiers who come back from the war “disabled” are the least likely to be able to afford private treatments and rehabilitative programs.
Score!
That’s exactly it–it’s really the only legible sign of mental retardation in US culture. Some people have relatively charitable views of people with Down syndrome but very little experience with people with other forms of retardation. As the visibility of people with Down syndrome increases, I wonder how it will affect other people with disabilities that more severely limit their possibilities for self-advocacy.
Foucault: Thanks for sharing your story. I think this is really insightful and points to how disability, like everything else, straddle the “nature-nurture” divide.
Now now Mr. Berube, there you go playing Bill O’Reilly again.
Bill O’Reilly suggested that you go read Rayna Rapp’s book? I gotta see that. Is it on YouTube?
this whole issue is like opening a can of worms where each worm is clutching its own opened can of worms
Yep, it’s worms all the way down. And defenestrated’s comment is not rambly at all; it gets right to the heart of the matter. So defenestrated will not be defenestrated — yet.
Oh, and isn’t it true that this site engages in censorship, thereby violating my First Amendment rights? Also, my comments are sometimes held in moderation for a while, based purely on their contrarian content, and I have a series of screen shots that proves it. I think it’s evident from this, and from virtually every comment thread, that no dissenting voices are permitted here.
mds, you are so meta-banned.
Ms Kate, I sang in my church choir with a young lady with Down’s who was chosen with her Down’s date to be Homecoming King and Queen of their high school. My wife works with those who have developmental disabilities, so I have had a lot of exposure to this particular group of people.
Oh, and Michael, about that “obvious question”, it would have been a cheap rhetorical trick and I’d ask you to let me off the hook. The more I thought about it, the worse it made me feel.
Isn’t this whole discussion immaterial when one can choose to abort for any reason? Why does is matter why they are aborting?
Foucalt, sorry, I must’ve missed that - I wasn’t intentionally ignoring your question! I’m glad Chris stepped in to answer, though; I didn’t take the name primarily bc of the Prague associations, but I’d be lying if I said they didn’t play a part
/as far off-topic as possible
I read the heartwarming prom queen/king article - and it really was heartwarming, I’m not being snarky. What really struck me was how the girl described herself in a way that demonstrated that she’s plenty aware of how others can sometimes perceive her disability. I guess I’m remarking on that in light of Laura’s earlier comment about her brother doing what he needs to to not get pushed around, but saying that probably still doesn’t clarify my point at all. I guess what I”m going for is how the Ray of Sunshine stuff usually seems incredibly condescending as far as what I see as its assumption that people with Downs are acting in a vacuum, morally pure out simply not knowing how the world works. That takes an awful lot of credit away from the individuals concerned, who aren’t exactly unaware of the obstacles that society throws in on top of their existing ones.
Hmm. Still probably not clear..
Thanks Laura,
Actually, posting that story about my childhood experiences of volunteering with the disabled made me remember I have a cousin with Down’s Syndrome.
The reason I tend to “forget” this fact is that my cousin lives in Eastern Europe, so I only see him once every ten years or so (although I hope to make visits more regular now that I am an adult who can afford to go places).
My cousin was born shortly after Chernobyl, so his parents initially attributed his disability to that environmental catastrophe; this may not be totally far-fetched. However, my aunt was also in her early forties when she had the baby, and he was her fourth child. My uncle was also in his forties.
Abortion would have been unthinkable in their social context. I’m sure pre-natal screening was equally unthinkable in the mid-1980s, just after the collapse of the Berlin Wall. Religious beliefs notwithstanding, the family completely embraced this child. When I met him the first time, he was a bona fide baby (under a year old). I remember being surprised by how “normally” his mother, father, and siblings treated him. They teased him, played with him, and even took him out to the fields when they worked (they are farmers). The “city slickers” in the family (other aunts and uncles, including my mother) thought they were going too far with this integrative approach: what would happen when he got older? What would happen when he realized he wasn’t like everyone else? Why set such high expectations when they would surely be dashed later on? But to my aunt and uncle, it was totally natural that this child would have chores and be funtional and helpful like their other children.
When I went back to see that particular family more recently (2002), I was shocked that he is now a young man! He is smart; he goes to a special school; he is interested in girls and has friends; he helps out at home and has quite a lot of responsibilities. Most suprising to me was that he recognized me right away from the photographs that my mother occasionally sends, and genuinely seemed to “know” me as his cousin. There is obviously a social/familial fabric of which he’s very aware, and of which he is very much a part. He tells stories about things I did when he was a baby, and obviously those are stories that were very lovingly recited to him by his parents. He is really their “treasure,” even though I’m sure their oen regret is that they cannot leave their farm to him, whereas the “normal” children do not want it.
I don’t know… even in second world countries that are so much more “underdeveloped” than America, people make decisions informed by love and patience as opposed to economic feasibility. In an agrarian economy that depends on having children around as helpful hands and heirs to the enterprise, having this baby was totally impractical. And yet, he was born and accepted into that community, and has become a valuable part of the household despite the many things he will never be able to do.
Mr. Mike — yep, O’Reilly mentioned her book but it’s not on YouTube.
But his reference to Rapp wasn’t my point. My point was that O’Reilly’s ego is so fine-tuned that when, say, the Pocatello Times-Globe or the Washquash Bee mentions his name, he pounces on it at the opening of his show.
Alas, when you decided you didn’t like what I had to say, you awakened from your slumber at the bell that goes off when someone mentions you in an insufficiently admiring way, pounced, counted my posts, and made an O’Reilly-like comment.
But yes, he liked Rapp’s book, and tends to take positions very sensitive to the disabled. I’m sure he’d like to lunch with you one day. Would you like me to arrange it?
Why does is matter why they are aborting?
Um, well, it matters to the person or people making the decision. See “people who oppose abortion except when the fetus has a significant disability,” above.
Downs syndrome–I’ve only ever personally known one person with Downs syndrome. He was the middle child of my younger son’s in-home day care provider. He was severely disabled; he was ten years old and he couldn’t speak, not a single word; he could walk around, but it wasn’t the world’s safest activity either for him or anyone or anything within swinging-arms’-length; he was in the hospital at least once a month for respiratory ailments and had apparently nearly died of them already four or five times. He wasn’t this way because his mother didn’t know how to care for him and didn’t love him and he wasn’t given pretty much every advantage you could think of to ameliorate his disabilities and problems. He was that way because he had Downs syndrome. I have heard lots about people with Downs syndrome who enrich the lives of those about them with their sweet natures, etc–this child didn’t have a particularly sweet or sour nature. He really didn’t have much of a nature at all.
I don’t know if he was typical of the level of disability that Down’s syndrome produces or not, statistically speaking. We seem to have some Downs experts on board, along with the post author–can anybody tell me, if I were pregnant with a fetus who had Downs syndrome–what level of impairment, mentally and physically, I could reasonably expect, percentage-wise?
How many comments in did we get before some creep posts about how selfish people (and he really means women) are for making decisions about careers and children he doesn’t personally approve of.
yep, O’Reilly mentioned her book but it’s not on YouTube.
But his reference to Rapp wasn’t my point. My point was that O’Reilly’s ego is so fine-tuned that when, say, the Pocatello Times-Globe or the Washquash Bee mentions his name, he pounces on it at the opening of his show.
Alas, when you decided you didn’t like what I had to say, you awakened from your slumber at the bell that goes off when someone mentions you in an insufficiently admiring way, pounced, counted my posts, and made an O’Reilly-like comment.
But yes, he liked Rapp’s book, and tends to take positions very sensitive to the disabled. I’m sure he’d like to lunch with you one day. Would you like me to arrange it?
This is mildly funny, Mr. Wilson. Or should I call you Allan Conrad? Oddly, you have the same IP address and email address as that rather pompous and verbose fellow. But no, don’t bother about the lunch. Thanks!
Michael, I have to correct you. The Catholic problem is not with divorce, but with remarriage.
This is the slippery slope that genetic testing runs into. In India, it’s against the law for a doctor to divulge the sex of the fetus, because in India, a vagina is considered a birth defect.
Also see “people who support abortion unless the fetus is a member of a protected class”.
This is not actually true.
You’re right that homosexuality was not considered as an identity in ancient Greece and Rome, at least insofar as homosexuality = having sexual relationships with members of the same sex, but sex acts still informed and created identity, much like they do today.
The difference is that it wasn’t a question of whom you were having sex with but of what role you took. It was “masculine” to be the active partner, and “feminine” to be penetrated — a man could fuck whoever he wanted, as long as he was the fucker and not the fuckee. The kind of created social identity of the “fuckee” (in Latin it’s usually called either cinaedus or pathicus) bears a startling resemblance to the modern conception of the gay man.
For men, having no sexual interest in women was considered weird, but so was having no sexual interest in men. We know a lot less about homosexual relationships between women, though.
If you’re interested, I suggest checking out Roman Sexualities, ed. by Judith P. Hallett and Marilyn B. Skinner. Princeton: Princeton University Press, 1997, especially an article called “The Teratogenic Grid” (it’s on pages 47-65) by a classicist named Holt N. Parker.
Sorry for being so off-topic; I know a lot more about classical gender theory than about prenatal testing.
“You’re incorrect, in large, on the cultural history of marriage and gays. ”
No, no, I’m not.
What I said was that marriage has not always been between a man and a woman.
Sometimes it’s been between one woman and two men.
Sometimes it’s been between one man and three women, or five women, or five hundred women kept in line by some conveniently created eunuchs.
Sometimes it’s between a man and a woman, but the man doesn’t liev with the woman and is more or less superfluous in her life, raising instead his sister’s children.
Marriage — not always between one man and one woman. For a long, long, long time. Western culture — not the only culture that ever existed. If you can’t get that through your thick skull, try treppanation.
#
Can I call boring? This guy is sooo boring. The discrimination argument is so ridiculous that my rats could provide a rebuttle, and the condescending tone virtually drips whining and insecurity.
#
I don’t believe that fetuses are human, so I have trouble getting het up over abortion of fetuses based on selection criteria, whatever those criteria are. It seems, at most, that this kind of selective aboriton is a symptom of existing discrimination, to try to solve it by addressing abortion is going to inherently create some women who are unhappy with their pregnancies. On the other hand, addressing the matter through culture and resources would probably get a number of women to change their minds withotu coercion.
I would personally abort a child with down’s syndrome. I don’t know if my perspective would be changed by increased access to information and resources. I don’t really think it would.
But I appreciate that there are a lot of people who are less entrenched in their positions than I, and I think it would be wonderful if their decisions were not, as someone in a feministe thread referred to it, coerced by the inadequacy of American medical care.
Oh, and? Sometimes marriage has been between one older woman who is ritualistically accepted as a man for the purposes of the ceremony, and another younger woman, who is designated as “her wife” and who sleeps with other men in order to have children that will inherit the ritual “man’s” goods.
And sometimes it’s been between men or women who have taken on a social identity as the other sex, much like our transsexuals, and people who are the opposite of their destination sex.
But oh, those Africans and Indians don’t count, I suppose.
I, for one, am outraged by the prejudice against D & D Rules Lawyers evidenced on this thread. Have we not hearts? When you cost us hit points, do we not bleed? Perhaps some of us have a genetic tendency to become rules lawyers, but would you therefore pre-screen our character sheets to decide which PCs should be allowed into your world?
/totally tongue-in-cheek geek
and aren’t accustomed to disagreement
I make my living disagreeing. You, sir, are talentless amateur. (As are you, Ms. Vimes. When your character sheets start incorporating words like “hereinbefore,” get back to me.)
I don’t believe that fetuses are human, so I have trouble getting het up over abortion of fetuses based on selection criteria, whatever those criteria are.
It isn’t about the humanity of the fetus; it’s about the humanity of born people. Like the disabled, and like expectant parents who are contemplating what choices they should make. You can believe a fetus is no more human than a rubber plant and still be concerned about arguments that a fetus with Down’s Syndrome “should” be aborted because god knows we don’t want any more little drains on the economy running around.
“It isn’t about the humanity of the fetus; it’s about the humanity of born people. Like the disabled, and like expectant parents who are contemplating what choices they should make. You can believe a fetus is no more human than a rubber plant and still be concerned about arguments that a fetus with Down’s Syndrome “shouldâ€? be aborted because god knows we don’t want any more little drains on the economy running around.”
With the word “should” and the implication that the decisin should be society-wide rather than personal, then of course I agree with you.
I realize it’s not your position, but I do have difficulty accepting that fetuses with Down’s Syndrome “should” not be aborted, also.
Again, if the problem is systemic discrimination, I don’t think the solution is to abridge women’s rights to decide what pregnancies they are willing to carry to term. The solution seems, to me, to need to be grounded in a shift in perspective so that the rights of one group are not attained at the cost of the rights of another.
There is also the larger problem that we may be making decisions without really knowing what we’re doing in the first place. Many genetically-based diseases are strongly influenced by environment, and the severity of symptoms, age of onset, speed of progression, etc. can simply not be evaluated simply by the presence or absence of a gene. For example, one gene might make a person more prone to heart disease, but with a healthy diet and lifestyle that person may never develop it. I don’t know enough about the genetics of Downs’ Syndrome, but I wonder if the large variance in symptoms is also due to environmental/hormonal/who knows what interactions either pre or after birth. There’s a real sense of hubris among many in the medical community about finding “genes that do X”, when more and more studies in proteomics are showing that just knowing the genes really doesn’t tell you much. Let an insurance company get a hold of the idea that “gene X increases health care costs by Y” and the nuances and error bars around that tentative connection will drop by the wayside in favor of a huge premium increase whether or not the knowledge is really there.
Lisa KS- I’ve worked with people who have developmental disabilities for 6+years and have a degree in psychology with emphasis on developmental disability, so while I’m certainly not an expert, here’s what I’ve picked up over the years. Someone more knowledgeable can feel free to correct me. About 85% percent of people with down syndrome fall into the mild range of mental retardation, which means that while they will need help in some areas of their life, they can achieve a fairly good quality of life and have independence in a lot of areas. Obviously, that means 15% will be more severely affected. I worked with one such individual, who also had OCD, and while his disability was more pronounced and he did have a tendency to become violent at times, most of the time he was extremely sweet and had more independence/ability to take care of his activities of daily living than most of the other individuals who lived in the ICF (intermediate care facility) that I worked at. Most people with down syndrome, especially with extended support, can achieve a lot more than people tend to think.
As far as the subject of the post, I’m one who has always declined early prenatal testing because of the high rate of falsely alarming information and the fact that most things discovered by early testing wouldn’t change my mind about bringing a pregnancy to term, but they are usually picked up on a 20 week ultrasound (i.e downs, spina bifida). I think it’s good that prental testing is available, because I believe women should have the right to make informed reproductive decisions, but I would be extremely angry if I were forced to undergo it. Especilly if it were so my insurance company could deny my fetus benefits once it was born. I’ve been on the receiving end of very, very bad news about my fetus and I know how heartwrenching it is, I have no desire to go through that only to find out “oops, the test was wrong, the fetus is fine” or to have to simultaneously deal with news of my child’s disability and my insurance deciding they weren’t going to insure him/her upon birth.
Oh gosh, I missed this earlier, Prof:
Thanks! For the non-rambly designation, and the kinda-non-threat of defenestration. I gotta say, that threat might be a lot scarier right now were I not sitting here next to the first story window in my first story apartment.
And mds - that can of can-holding worms image came back to me while I was standing in line at the grocery store earlier this evening, and I almost certainly looked like a total nutjob standing there giggling to myself
I realize it’s not your position, but I do have difficulty accepting that fetuses with Down’s Syndrome “should� not be aborted, also.
I’ll just step back and let M-Be handle this one.
i haven’t read the entire thread, so i’m not sure this has come up.
i’m in favor of prenatal testing (not mandatory testing, but available testing) because, well, i can imagine myself in a situation where i might be emotionally and financially able to raise a typical child, but not able to raise a child with Down’s or another “birth defect” (deliberate scare-quotes).
i’m a freelance designer. i often don’t have the absolute best of health insurance. how would i pay for all the additional medical attention such a child would need? i’m a perenially single lesbian who doesn’t see herself walking down the Provincetown Aisle before deciding to bring a child into this world. I’m prepared for the idea that i may end up raising a child alone. and I work 60-70 hours a week, on a good week. which means i’m going to need fantastic childcare. said childcare is much harder to find, and much more expensive, if the child has special needs. a 20 year old with Down’s who can live a fairly independent life is great. but what about a 3 year old?
for all of those reasons, i can definitely see a situation where i’d want to heavily weigh the idea of whether to bring a special-needs child into the world, mainly because if i’m going to create a human life, i want to know that i can care for and provide for that life, for as long as she or he needs a caretaker and a provider. it’s not so much about love, but about starvation, exposure, neglect. to me, aborting a child i can’t provide for is preferable to bearing a child to whom i will never be able to do justice. better to never live than to live a life where the ends never meet, where you suffer because your medical needs aren’t met, where there’s nobody to care for you properly.
of course, then you have all the stuff about how sketchy the whole thing is, the false positives, the pressure and misinformation. and that stuff sucks. and that’s where i’d be tied in knots. but if i could potentially know, and make a choice whether to bring a child into the world only for them to suffer needlessly, well, i’ll take the choice, thanks.
“I’ll just step back and let M-Be handle this one.”
Okay. I wasn’t implying it was his position either.
In all honor and respect Mr. Be Rube. Have you ever thought of the fact they you are a intelligent, reasoning, person, who created a human being who lacks intelligence and emotional control? Why?
As for all your giving advice about “choice” in matters or life and death, you allow death for others, but denied it for yourself.
Could it be that, when a prospective course of action comes to mind,(or has been undertaken) for Be Rube, and it gives rise to anxiety and disquite(deciding to end a defective humans life or a abortion), you asked yourself, in what direction the anxiety is leading?
Does it tend to inhibit or assist what I(Be Rube) know in conscience, is the better part of I,(Be Rube)? Maybe you should leave it at that Be Rube.
Simply say, in such a short sentence, to anyone, does it tend to inhibit or what you(the public,etc.)know in conscience, is the better part of you? Get it? I know you do, since your intelligence is superior and above average. So Be Rube, when you preach from conscience,which is only a faith of reason, for others to choose death from abortion, your conscience assist them also. But, of course, one must not be a hypocrite about life, and simply appeal to others to lower their principals below Be Rube’s better part of himself, so Be Rube can preach to others while not practicing what he preached to himself about Downs Syndrome.
They like you, the abortionist, you appeal to that better part of them, which needs your intelligence to assure they are the better part of themselves.
Poor Be Rube. a intelligent man who knows over-civilization and barbarism are within inches of themselves, and a mark of both is the medicine man. Be Rube took the civilized choice, and preaches to the best part of the barbarian which has always destroyed innocent life.
GOTTO: What the hell have you been smoking? Yours is one of the most nonsensical and pointless troll-posts I’ve ever read.
Anyway, MICHAEL, I’d like to quote what I said the last time ableism came up here at Pandagon:
For professionals to use scare tactics to convince potential parents that abortion is best in cases where prenatal testing reveals the potential presence of a disability is about as anti-choice as banning abortion. And so too would it be anti-choice for insurance companies to discriminate against the disabled more than they already do.
These observations are not meant as criticisms of your post. They’re merely my two cents.
In reference to “gotto”, Dr. Frederick Frankenstein comes to mind: “You are talking about the nonsensical ravings of a lunatic mind!”…
Re Grotto:
I think some people just post here to test the limits of grammar. How far can you go before the language buckles and snaps in half?
One item I’d like to add to the discussion. There are risks to the fetus in performing prenatal testing. It’s why they do not recommend amnios when a woman is younger than 35 years old — the risk of miscarriage from the amnio is greater than the risk of Downs until the mother is age 35. I also note that it is always the risk of Downs that is mentioned with respect to amnioscentisis — not sure if that’s all that it tests, but when you read books about preconception and conception, that’s the big ooogabooga scare out there for pregnant women.
In any event, because there are specific risks of miscarriage associated with that form of genetic testing, I would be against mandatory testing. Why create an unnecessary risk to a pregnancy if, in the course of diligently providing and obtaining care for a pregnant woman and her fetus, her doctors and her (and her parenting partner) will make decisions based on the new family’s risk tolerance for both prenatal testing and caring for a child who has Downs? It seems excessive.
I have three children, and had prenatal testing (amnio) with the two younger ones because of my age.
I would have terminated if the test had shown Down Syndrome.
I’m not saying it would have been a easy happy choice, obviously, but I’m reasonably sure I would have done it (can’t know since the situation did not come up). I am also reasonably sure that my spouse would have supported me in that choice.
A few reasons, and these are of course personal.
One is that I know myself. I’m a reasonably good mother and had I had a disabled child (or if I end up with one, since nothing is certain in life), I’m sure I’d come through and do what needs to be done. However, if I had the choice, I did not feel that raising a child with a disability is what I wanted to do. Selfish? Yes. I’m aware of my limits and prefer to avoid pushing them.
This was of course a deeper concern when making decisions with child #2, as opposed to child #3, but I did not want my oldest to be end up being responsible for a good portion of her life, for a younger silbing who was disabled. Those of us who choose to have children in our late 30s/early 40s aren’t going to be around in 50 years (in general etc) and while I could make sure that there would be no financial burden, there is still the stark fact that after my dh and I die, someone would have to take care of the disabled person. How could I ask my daughter to do that? This was less of a “reason” for us when we were making the decision to have an amnio with our third child, since in that case there would be two children to share the responsibility.
An other reason, for us, is that I just can’t see bringing a child into the world who is already handicapped. It’s bad enough that half the kids out there are below average (smile), let alone deliberately choosing to birthe a child who probably will have all sorts of problems with school, getting a job, getting health care, living on his or her own. I’m not going to touch on the possibility of physical issues which can be painful and/or debilitating.
OTOH, if anyone else wants to, I’ll happily pay taxes and throw my support behind any type of accomodations needed. Just because I don’t want to go that route doesn’t mean that I believe that everyone should choose like me or that “well, they choose to have the kid, why should the rest of us pay?”
And one more comment: while I don’t like the idea of “mandatory” testing, I do think there is great value in knowing what is ahead, no matter if you are planning on terminating or not. First a certain amount of processing and grieving can be done before birth, so that after it can be all about bonding. Next, it seems that breastmilk is of great benefit to kids with DS (perhaps even more than to regular kids), and having a good Lactation Consultant on call can help, since some Down Syndrome kids can have latch/sucking issues.
This is the slippery slope that genetic testing runs into. In India, it’s against the law for a doctor to divulge the sex of the fetus, because in India, a vagina is considered a birth defect.
Also see “people who support abortion unless the fetus is a member of a protected class�.
i’m late (been traveling), but i’m surprised tony said that. as far as i know most of the commenters here who said that they would not rule out bearing a disabled baby are also pro-choice, which means they acknowledge that it’s not their call unless it’s their uterus. get it?
i can’t believe how many people seem to gleefully anticipate pulling out the old “well what about when women are aborting GIRL FETUSES? then what, Feminists???!??!?!” nonsense. it’s so frequent that by now the response is rote: “of course i support the right of any woman to make her own decisions about childbearing, like i just said. since it’s terrible that girls are unvalued by society to the point of women aborting female fetuses in response, hey maybe we should try to end sexism in the world.”
I don’t see any difference at all between your view and a claim that aborting female fetuses is an option that can be taken without there being wider social consequences. And your flippant jest about half all kids being below average just adds to my consternation.
One cannot diminish the potential value of fetuses with disabilities without also saying something about the worth of those already born. People on this board and elsewhere have twisted themselves into pretzels trying to separate out the two, but it doesn’t work:
Those who claim that aborting otherwise wanted (and perfectly viable) fetuses that test positive for Trisomy 21 or other conditions are making a statement about how much value these fetuses would have in relation to their non-disabled counterparts if allowed to develop fully.
In your case, people with disabilities are not valuable enough as individuals to offset the “burden� they would place upon their siblings. Your maw-mawing about how you’d never castigate someone else for her choice is just smoke and mirrors designed to mask your own (in some ways unfounded) prejudices.
Michael,
Thank you for continuing to blog. I always learn a lot from your posts.
In your case, people with disabilities are not valuable enough as individuals to offset the “burden� they would place upon their siblings. Your maw-mawing about how you’d never castigate someone else for her choice is just smoke and mirrors designed to mask your own (in some ways unfounded) prejudices
Placing a burden on a sibling is allowing my child to take on my responsibility, one that I will possibly not be able to carry for the full life of a disabled child. Is that fair to the other child, to make them responsible for my choices? It’s all well and good to say that yes, that’s part of being a family, but I personally disagree. If it happens, it happens and you deal with it, that doesn’t mean I have to choose to make it that way. Again, I was lucky not to have to make that decision at all.
And for your smoke and mirrors comment, you are totally off base. Just because I would not make the same choice doesn’t mean their choice is bad or that I would not support it. I have supported friends through both choices, btw, and neither was easy.
One cannot diminish the potential value of fetuses with disabilities without also saying something about the worth of those already born.
No. Once the child is born, like for every child, you do everything you can to make sure that child has a healthy, happy etc life. Down Syndrome, no Down Syndrome, it makes absolutely no difference. Prejudice? Possibly, but not the one you think: I don’t know if I have what it takes to deliberately choose to parent a disabled child. Maybe, in that situation, I’d “come through”. I hope I would. I shudder to think of what it would mean if I didn’t.
It’s bad enough that half the kids out there are below average (smile), let alone deliberately choosing to birthe a child who probably will have all sorts of problems with school, getting a job, getting health care, living on his or her own.
NWHiker, this was rather clearly not a comment about what you would do, but about choices in general.
The flip side of the ‘aborting girls’ argument is, why would anyone deliberately choose to birth a daughter, knowing what the world has in store for women?
You act as if the only alternative to having your able-bodied offspring take on responsibility for a disabled sibling is to abort. And the reason you gave for abortion was not just that you yourself couldn’t handle a disabled child, but also because…
You might want to step into the sun once in awhile and examine your bigotry while there.
So in your view, choosing to bring a disabled fetus to term is tantamount to deciding your kid should have a disability. You then hint at a belief this is irresponsible behavior.
Nope. I’ve pretty much pegged you.
I can see it being hard to choose, but I can’t see why nonjudgmental support should take so much out of you.
There it is again: your belief that people who bring disabled fetuses to term have chosen to make their kids disabled. Um no; those particular kids were disabled not by parental choice but by chance. The parents choose to bring forth such children, possibly in the belief that people cannot be boiled down to a single characteristic, but that doesn’t mean they chose for the children to be disabled as opposed to being able-bodied. They accepted what they got, rather than sending it back for a refund on damaged goods.
You’d come through, yes; and no doubt selflessly fling yourself upon the sacrificial alter of parenting a defective child so that your sub-par offering to the world may live a shadowy existence among his brighter peers and at the sufferance of his siblings.
Sorry dude, but I stand by my original statement: you’re prejudiced against people with disabilities.
[…] Michael Bérubé, full-time Professor of Dangeral Studies and weekend blogger at Pandagon, has both a post and an article (in the Toronto Globe & Mail) about prenatal testing and some of the ethical issues it raises, in particular where the results are a factor in deciding whether to abort a fetus. […]
“Those who claim that aborting otherwise wanted (and perfectly viable) fetuses that test positive for Trisomy 21 or other conditions are making a statement about how much value these fetuses would have in relation to their non-disabled counterparts if allowed to develop fully. ”
Yeah, okay. Probably.
Given a choice, I would rather have a child without down’s syndrome than a child with down’s syndrome.
That doesn’t mean that I support the mistreatment of people with Down’s. There are a lot of handicaps that I would prefer not to see manifest in my children, among them things I share. I don’t support prejudice against myself. But in general, I think it’s easier to live life without bipolar disorder, and so if I could check my fetus for a tendency to bipolar disorder (which I realize is scientifically unlikely ever to happen), I would consider aborting a fetus with a positive result.
The fetus isn’t a person.
A friend of mine has Marfanz, and I’m relatively sure that her decision not to have children is based in part on a fear that they will share her affliction, which has made her unhappy. If she could assuage her fears through prenatal screening, would she be immoral for doing so?
I *adore* my friend. She’s brilliant and fabulous. But she isn’t defined by her illness, any more than I am defined by brown hair or hazel eyes.
Is a person with Down’s syndrome defined by *their* illness? Sometimes that’s the only conclusion I can come to, given the way some of these discussions go. “If you abort this other fetus — which is not a person — which has the likelihood of developing into Down’s syndrome, then you are devaluing everyone who has Down’s.”
It’s true, I’m saying Down’s is an undesirable trait — for me, at least; if other people do desire it or find it neutral, I respect that. But is it such an overwhelming trait that it requires identification as a class trait, rather than as an incidental trait?
Maybe it is. And maybe that’s why my attempts to think this through via my own handicaps, such as bipolar disorder, aren’t 100% useful. Bipolar disorder affects me, no doubt, but it is not something I consider to be part of the essence of what I am, the way I am a woman, or a liberal, or an American, or a writer, or even an ethnic Jew.
“They accepted what they got, rather than sending it back for a refund on damaged goods. ”
How is this NOT consumerist?
I’m sure there’s a Marxist argument to be made for how capitalism has affected one’s attitude toward parenting. However, the way you’re reacting to it doesn’t seem… non-consumerist. You’re still using the language of consumerism, although you promote a different result. I’m not sure this escapes the trap of considering fetuses through the lens of consumerism, it just seems to take a different position within that filter.
More, I think your attitude — or at least what I’m getting from you, and I apologize if I’m misrepresenting you — reflects a certain hostility to technology. Your interpretation of the screening tests is very dark, and I’m sure that the Marxist aspects of that interpretation are legitimate. At the same time, though, the criticism seems a bit circular — we’ve become more consumerist about pregnancy, as you can see through the way we use this technology, which we didn’t use before because it didn’t exist, so we’re more consumerist about pregnancy than we were before.
How would people have used the technology if it *had* existed 100 years ago? Is consumerism really the heart of it? Is eugenics really the heart of it? Parents do many things to try to increase the traits of their children they consider admirable. Do we object because the technology is new? Because it’s reminiscent of earlier government-enforced regimes? I’m not sure, but this conversation feels like it’s probably an artifact of this cultural moment. Not that I’m sure how it’ll work out — could be any position — but I’d have a hard time believing that these concerns will seem as vivid when the technology has been around in the culture for a hundred years or so.
[…] More Lazy Linking: Prenatal Testing March 12th, 2007 Michael BerubĂ© has a post up at Pandagon about prenatal testing, with a link to an article of his in the Toronto Globe and Mail. […]
Be Rube is a functionalist, preaching functionalism.
A advocate of functionalism who has a non fuctioning child.
A person who if asked to play the game, “person, place, or thing” would answer that a zygote with Retardation,( I leave it to Berube to find a better word) is a thing. That those who are functionalist,such as Marcotte, see his child simply as non functioning thing, with no real personhood, and smile at him.
Now, pile on the fact, that children are a by product of pleasure for functionist, and one has a “problem child” who does not function. Is your child a problem or not BeRube? Your book details those problems;feeding the child,etc.
Abortionist love you, you make “persons” magically into “things”, from being a functionalist.
gotto, I’m sure you’ll take pride in this, but you are truly an offensive person. You disgust me and many others on this blog.
Whatever Jamie BĂ©rubĂ©’s existence brings to the world must be worth an order of magnitude more than you have so far…
Michael! What a joy to have you back. Once a week will be just fine- thanks for writing.
Devil’s Advocate, I think you’re being really unfair to NWHiker. I’m not sure it is bigotry to point out that raising a disabled child in this country is difficult, expensive and burdensome. I’m not sure it is bigotry to be concerned about what happens to that child after you die. Yes, many disabled people are able to live independently. But many aren’t. And any parent would worry about leaving their children without protection, or leaving their other children seriously burdened.
I think this speaks not to NWHiker’s bigotry, but to a broken system in our country. We don’t have a decent social safety net. We don’t have affordable health care. We don’t offer the kinds of resources that many people with disabilities need, and so the burden of providing those resources falls entirely on the family of that person.
In high school, I volunteered with profoundly disabled students — not kids with mild or moderate Down syndrome, but students who were unable to speak, move, etc. They had varying mental capacities, from the student who was mentally fully-functioning but trapped in a body which would not allow him to speak or move more than one arm to the students who had very little mental an physical functioning skills. A special bus drove the entire class, minus one student, back and forth to school every day, because they all lived in the same state-run home. At least one student was in his 20s.
That is the unfortunate reality of disability in our country. No, it’s not the story that all people with disabilities have, but the truth is that raising a disabled child can be extraordinarily difficult, and many profoundly disabled children end up as wards of the state. I’m not comfortable demonizing individuals who are honest with themselves in recognizing that they would not handle, or would not want to handle, parenting a disabled kid.
That said, I would like to think that if I had a wanted pregnancy and found out that the child would have Down syndrome, I would choose to give birth and raise that child anyway. But that’s because I’ve had lots of interactions with people who have Down syndrome, and I think it’s something that I could handle. I’m not sure, though, that I could be a good parent to a child with the kind of profound disabilities that the students I worked with had, even though they were wonderful, unique, kind, funny people.
Perhaps that makes me a bigot, too. It’s not that I think disabled people shouldn’t be born or that disabled people automatically have a lower quality of life than “normal” people or that “normal” even means anything at all. But I think we’re going down the wrong path when we start attacking women for the reasons they terminate their pregnancies, instead of attacking the social conditions which influence those decisions.
And there are women out there who would terminate a pregnancy if they found out the fetus had some sort of abnormality even if all the best social structures were in place. I haven’t been in her shoes. I can’t tell her that she’s bigoted or selfish or wrong for making that decision.
Oh, and Michael, great post!
I think gotto brings up an important point, actually. If you put a space between the second and third letters in my last name and capitalize the R, you do indeed get Be Rube. Touché!
Everyone else, thanks so much for so thorough a discussion of these questions — it’s really not a clichĂ© to say that there aren’t any easy answers here, and the more considerations one brings to the table, from maternal age to number of siblings to the ethics of employer-provided health insurance to the kinds of disabilities one can and can’t imagine dealing with, the more complex everything gets. It’s worms all the way down. (And how the hell did I forget about ADHD? Yet another thing screening won’t catch!) But right now, Jamie and I are packing up to go to SeaWorld in Orlando, because that’s my way of thanking him for sitting through a long afternoon of hearing his father talk about academic freedom during a visit to Stetson University in Deland. See you all next weekend!
Dear Mr. Ess, just play, person, place, or thing amongst your friends.
My wonderful Devil Advocate, just for you and your simplicity;We had to burn the village to save it. Get it, you fissillingual, flagitious, tumbrel.
Just remember who you serve Advocate, when you make the wage larger there is no need to make the family smaller. If you can make the family small, there is no need to make the wages greater. You sly devil you.
In order to store it your and your simplicity; the We the hazard my wondering Rob demoniac advocate must ignite only the village. Your tumbrel atrocious martial art grudge of it, fissillingual get. Wages by you when compared to it makes it will grow, you serve to the advocate to peel, only think who, the family is smaller and the necessity which it makes. You will be small the family and the possibility which you will make is, wages compared to company grudge the necessity which it makes. You demoniac you who are cunning.
–Ah, now it all makes sense.
Gotto is the first troll I’ve ever seen who speaks Jabberwocky.
[…] Many Orthodox Jews advocate Tay Sachs prenatal genetic screening, but the practice with this and other diseases remains in the hot seat. Here, a lengthy analysis. [Pandagon] Breast cancer stamps, which sell for six cents more than regular stamps, have raised $50.3 million since their introduction in 1998. Seventy percent of that will go to research. [Breast Blog] A 2005 edition of Parenting reminds one woman how much we overestimate our actual risk of contracting breast cancer. [The Cancer Blog] Of mice and breast cancer. The human mammary tumor virus and the mouse mammary tumor virus are 95 percent genetically identical, which could lead to a breast cancer vaccine sooner than expected. [Malyasian Medical Resources] Jewish physician and philosopher Maimonides prescribed chicken soup for colds in the 12th century. Scientific studies stifle controversy over the brew’s potential benefits, showing it may at least alleviate the sniffles. [Dr. Weil] Connecticut hospitals withhold the availability of and information on Plan B from women rape victims, leading to a hearing on “SB 1343 - An Act Concerning Passionate Care for Victims of Sexual Assault” which aims to reverse the practice. Connecticut resident Bob Adams urges doctors, rape victims and their families, and others to testify in Hartford. [Connecticut Bob] The new Girl Talk: Fat Talk. It occurs when a group of women get together and talk about how much they dislike their bodies. Research on college students engaging in this activity revealed participants are more likely to like women who degrade themselves than women who don’t or actually express satisfactory or positive images of their bodies. [Aphrodite Women’s Health] We still don’t know nearly as much about urological health in women as men, so the journal Urologic Nursing has devoted its February issue to us. Topics include: the oft-misdiagnosed painful bladder syndrome; stress urinary incontinence, common in young athletes; hormonal treatment of vaginal atrophy, a common consequence of menopause. [UroToday] Careless reporting alleged at Salon. Scientists question the accuracy of an article about women’s health in the military. [ScienceBlogs] […]