The Ethics of Genetic Testing

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.

As you may know, Michael is the father of a son, Jamie, who has Down syndrome. He’s written quite extensively about Jamie, both at his now-giant nuclear fireballed blog and in a 1996 book. When Michael’s wife Janet was pregnant with Jamie in 1991 at the age of 36, the doctor suggested amniocentesis “just to make sure.” They decided against the procedure for a variety of reasons, among them that the risk of miscarriage was about the same as the risk of Down syndrome. Another was that the results would not be available until 16 to 18 weeks into the pregnancy, later than they were comfortable with for making a decision about termination, though any severe, life-threatening anomaly such as anencephaly, would be visible on the sonogram much sooner.

I didn’t think it was worth it to screen for Down syndrome when Janet was pregnant in 1991. And back then I didn’t have any idea that our “disabled” child would go on to learn elementary French or the characteristics of 40 different species of sharks. I didn’t dream that he’d be such a capable swimmer and basketball player, or such an enthusiastic fan of Harry Potter.

Now that I know what Jamie is like, I’ve come to the conclusion that our fear of mental retardation is out of all proportion to the phenomenon itself, and that millions of “developmentally delayed” people can live happy and fulfilling lives — far happier and more fulfilling than most of us “normal” and “gifted” folk have been able to imagine.

Both the post and the article are a thoughtful consideration of the issues surrounding disability, prenatal testing, and abortion. Tests for Down syndrome are now less risky and show results a lot sooner than amnio. But Michael questions whether it’s appropriate to run prenatal tests for every abnormality that can now be detected when we don’t even know what “normal” really is. Certainly, he argues, when painful and life-threatening genetic disorders such as Tay-Sachs disease can be eradicated through prenatal testing and abortion, that is an unqualified good. But what of Down syndrome? Or deafness? Or autism? These are all disorders that carry a lot of fear, a lot of difference, a lot of heartache. But is eradicating them the same kind of unqualified good that eradicating Tay-Sachs is?

Here’s where the picture gets complicated. Michael argues against limitations on prenatal testing, even as he cautions against overreliance on them:

The debate about prenatal screening has managed, remarkably, to obscure two critical things: We have no idea what we mean when we talk about “screening,” and we have no idea what we mean when we think about “unqualified good for the species as a whole.” And yet as the technology of prenatal screening improves with each year, we tell ourselves we’re getting somewhere. How can that be?

Perhaps it’s that we live in a world where an ounce of prevention is rightly considered to be better than a lifetime of symptomatic treatment — but where the logic of “prevention” is wrongly mapped onto pregnancy and childbirth, so that it perversely seems (to some people) as if it’s always better to prevent some lives than to live them.

Or perhaps it’s that we don’t stop to consider all the things we can’t see when we “screen” pregnancies. Things such as cerebral palsy or some forms of autism or schizophrenia or, my favourite term, “pervasive developmental delay” — a formal way of saying “we have no idea what’s going on in there.” Some advocates of across-the-board prenatal screening seem to be especially confused about what the technology can and can’t do.

Or perhaps it’s that we don’t yet know how to distinguish disability from disease, ordinary fleshly frailty from relentless predatory illness.

And then there’s the added complexity of the right of the mother to control of her body and of the parents to decide what they can handle:

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?” 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.

MDs in Canada have recently recommended that all pregnant women be screened for Down syndrome; Michael remains skeptical of the utility of doing so, in part because it treats Down syndrome as something that should qualify a fetus for an automatic termination. But because he supports choice, and he trusts women, he disagrees strongly with those, like George Will, who believe that women do not have the right to make difficult decisions about their lives based on prenatal testing:

Occasionally, I run into parents of children with Down syndrome who are quite certain that no one should ever be able to make prenatal decisions with which they themselves would disagree. In the United States, for instance, conservative pundit George Will has recently written that the legalization of abortion, combined with prenatal screening, has led society on “search-and-destroy missions” meant to rid the world of people like his son 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.”

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.

Occasionally, we get an anti-choice troll here who tries to catch us in an inconsistency by demanding to know if we support choice if it means that people will be aborting female fetuses (as is frequently the case in India or China), or if there were some kind of prenatal testing for homosexuality. Indeed, Michael’s post at Pandagon attracted one of these types. We also get people who are disability advocates who are understandably freaked out about the idea that the disabilities they live with are considered such a burden to prospective parents that the parents opt to terminate the pregnancy rather than raise a child with a disability.

Let me state for the record that I support abortion at any time up to viability for any reason whatsoever, from birth defects so serious that the child will be dead moments after birth to wanting a child of a different sex to not wanting to raise a child with Down syndrome to wanting to fit into a prom dress.

Why? Because I trust women. I trust them to know what’s right for their own lives.

However, that’s not to say that I can’t also believe that we, as a society, need to change the conditions that lead to abortions in the first place. And that means comprehensive sex ed, it means contraception, it means emergency contraception. But it also means strengthening the social safety net so that women of limited means can afford to have a child, and it means changing the way that we as a society think about the disabled and the different (and, in the case of widespread sex-selective abortions, about the value of women and girls). When people are confronted with the news that the child they’re expecting will be born with a disability, it can make all the difference in the world if they know that they will have resources available to help them, not just when the child is young and in school, but long after the parents have left this earth.

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71 Responses

  1. Interrobang
    Interrobang March 12, 2007 at 4:18 am |

    I have cerebral palsy. It isn’t exactly an easy thing to deal with, and goodness only knows what my parents went through with me. (One anecdote my mother tells recounts her grabbing a doctor by the collar and yelling at him to get him to give her the information she needed in plain English.) I figure that nobody should have to raise a child with a disability if they don’t feel they’re up to it.

    I also think nobody should have to raise a child — period — if they don’t feel they’re up to it, so I’m kind of not seeing where this is an “ethical grey area.” Let the rational actors decide whether or not they want the job, and stop worrying about the tender sensibilities of people who don’t even exist (yet).

    I also don’t quite get how someone else making a decision you don’t agree with but which doesn’t affect you in any way somehow devalues your sense of self-worth. Seems to me that these people who believe this are making a version of the “gay marriage destroys straight marriage” argument. In what way does someone else’s private decision that you’ll never even know about impact you? Short answer: It doesn’t, so get a life.

    Then again, I’m quite firmly of the opinion that if somehow, magically, just like that, every baby born in the world was somehow free of congenital disease, disability, and defect, that would be an unqualified good thing, so what do I know?

  2. Brad
    Brad March 12, 2007 at 8:38 am |

    I think the author is being a bit disingenuous WRT mental disabilities in general. While it certainly is true that many people with mental disabilities can lead fulfilling lives, it is hardly universally true.

    As for the desireability of eliminating mental disabilities in general, it does seem like an unqualified good thing. The *method* by which we try to achieve this good thing can be good, bad, neutral, or mixed, but to question the objective itself seems wrong to me. Naturally it is possible to try to achieve the (good) objective by horrible means (ie: manditory abortions for all fetuses with detected defects), but just because one way of trying for the goal is bad does not mean the goal itself is bad.

    Given the imprefect nature of the world, the complications inherent in that sort of question, etc, the only rational choice is to give people all the information and let them decide for themselves whether to carry a disabled fetus to term, or to abort. All of this, naturally, while pursuing ways to either correct the problems.

  3. Michael Bérubé
    Michael Bérubé March 12, 2007 at 9:10 am |

    As for the desireability of eliminating mental disabilities in general, it does seem like an unqualified good thing.

    This may sound surprising, but I couldn’t agree more. We’ll start with people who lack empathy, because that’s clearly the most debilitating mental disability of them all.

  4. irenekaoru
    irenekaoru March 12, 2007 at 9:33 am |

    …it also means strengthening the social safety net so that women of limited means can afford to have a child…

    Very interesting and thoughtful post, I enjoyed reading it–but I do not understand why the above quote was in there. I receently started reading this blog and truly appreciate the slant toward valuing individuality and trusting women to make their own choices. This comment about “strengthening the social saftety net” doesn’t seem to fit. Choosing not to have a child is a right. But choosing to have a child and having help from strangers? How is that a right?

  5. Tricia(freya)
    Tricia(freya) March 12, 2007 at 9:53 am |

    But choosing to have a child and having help from strangers? How is that a right?

    No one said it was.

  6. Penny
    Penny March 12, 2007 at 9:55 am |

    I believe the idea is that the “strangers” receive the benefit of cooexisting and eventually being cared for themselves by people who are educated, healthy and have had the experience of being well cared for.
    The “strangers” also get to live in a society that doesn’t penalize children for being born to a not-so-wealthy parent.

  7. Hawise
    Hawise March 12, 2007 at 10:05 am |

    M. Bérubé, empathy can be a learned skill, not necessarily easily learned but studied and put into action nevertheless. Lack of empathy is not the disability, the disability is unwillingness to learn essential life skills.

  8. Brad
    Brad March 12, 2007 at 10:51 am |

    Bérubé: ???

    Empathy is what causes me to desire a world in which people don’t suffer from those sorts of disorders.

    We seem to be miscommunicating, what leads you to snark that I’m a non-empathic person?

  9. Michael Bérubé
    Michael Bérubé March 12, 2007 at 10:56 am |

    Thanks, Hawise. But really, I was remarking somewhat snarkily that Brad (a) assumes he knows what a mental disability is and (b) assumes that we can test for, and eliminate, mental disabilities. Sorry for being a bit oblique, but if you stop to consider (for example) schizophrenia, which I mention in my Toronto Globe and Mail essay, I think you’ll see my point.

    And zuzu, I don’t have a bad side! It’s snark all around.

  10. nerd chik
    nerd chik March 12, 2007 at 10:56 am |

    The problem that I see when I hear about “happy and fulfilling lives” for the cognitively disabled is that it refers to _only_ the children of the privileged and NOT anyone else. I have one family member with DS and a close friend with 2 mentally impaired kids. Getting the children to occupational therapy, physical therapy, speech therapy and various specialist appointments is a literal full time job. One parent in both families had to quit work to work as an advocate for their child(ren). Luckily, both families had a partner that had good health insurance and the income to provide for the basic needs of the family as well as the undercovered or uncovered therapies.

    I know many families in which this isn’t possible. Either health insurance sucks or 2 incomes are required. My grandparents were forced to turn my aunt over to the state as a teenager because the couldn’t even afford the medication to control her mental illness, let alone what therapies were available in the 70’s. As someone in State care, she received nothing that would let her have a “happy and fulfilling life”, despite the continued dedication of destitute parents to try and advocate for her.

    It may be different in Canada – single payer healthcare and all. But unless your parents are in the top income brackets in the US – a child born with a cogitive impairment has very little chance to be cared for properly , let alone have a chance at happiness.

  11. Amanda Marcotte
    Amanda Marcotte March 12, 2007 at 11:08 am |

    I don’t trust all women to make the “right” decision—let’s face it, someone who is wealthy and aborting a pregnancy because of Down’s and is worried about what the neighbors will think is being an asshole—but to me the overruling principle is freedom. Most people will do the right thing if given the freedom (and implied respect) and the tools to do so. That a handful of people will fuck it up does not change the fact that the overall social good is generally better served by liberty than by not-liberty.

    Take, for instance, habeas corpus and the right not to be held by the government indefinitely. We accept the possibility that in very rare instances, you will have situations where the person being held without trial probably did something and the government just can’t prove it. But letting those rare dangerous people out is still better, on the balance, than giving the government power to hold indefinitely political activists and other people that are considered threatening to power (but good for the people). More freedom wins out.

    Same with freedom of speech. We can’t sacrifice the greater good of having open dialogue in a democratic society because a handful of people spout off some hateful stuff.

  12. Dianne
    Dianne March 12, 2007 at 11:09 am |

    BTW: People do understand that we can not eliminate Down Syndrome permanently through pre-natal testing, don’t they? DS is caused by a random, accidental failure of dysjunction of chromosome 21 during meiosis. Except in rare instances of translocation caused DS, it is not stably heritable. If 100% of DS fetuses were aborted for N generations and then all prenatal testing were stopped, there would be babies with DS born in the N+1 generation.

    I agree with interrobang, Jill, et al: Leave this decision to the individual. If a given person doesn’t want to have a baby with DS, female genetalia, or blue eyes why should they be forced to carry a fetus with that characteristic? Better to make life easier for parents of children with DS so that more will decide that having the baby is a good idea and to work for equality between the sexes so that wanting a child of one gender or another will be an exotic personal decision and as many people will want one gender as the other.

  13. Roy
    Roy March 12, 2007 at 11:26 am |

    Choosing not to have a child is a right. But choosing to have a child and having help from strangers? How is that a right?

    As someone else said, who claimed it was a right? The author may think it’s a right- I know plenty of people do consider healthcare an essential right- but I don’t know that the author expressed it in terms of rights. It seems more like the author was suggesting that it was A Good Idea.
    There are plenty of things that are A Good Idea that aren’t necessarily rights.

    As for why it’s A Good Idea:

    When people are confronted with the news that the child they’re expecting will be born with a disability, it can make all the difference in the world if they know that they will have resources available to help them, not just when the child is young and in school, but long after the parents have left this earth.

  14. Bitter Scribe
    Bitter Scribe March 12, 2007 at 11:28 am |

    I honestly don’t know what I would do (or, more accurately, advise my wife to do) if I were in this situation. But one thing I do know: I would never, ever criticize anyone who was in this position, no matter what decision they ended up making.

  15. irenekaoru
    irenekaoru March 12, 2007 at 11:38 am |

    Roy:

    No one claimed it was a right, but the inclusion of the comment confused me. It seemed to imply that the OP thought it was a right, that “women of limited means” should have the societal support to have children if they want, which strikes me as a huge, whole other issue. Re your assessment of why it’s a good idea, it seems to be begging the question of whether it is A Good Idea to create an incentive to bring more disabled children into the world (also a potentially huge ugly debate I don’t think I want to get to). Good stuff, got me thinking.

  16. Pansy P
    Pansy P March 12, 2007 at 11:48 am |

    I’m actually scheduled for (late) first trimester prenatal screening later this week. It’s not only for Downs, but also for spina bifida and other such abnormalities. I’m hideously conflicted about it and really hope the tests all come out negative so my husband and I don’t have to make any further decisions about it.

    We decided to do the screening (and this is the only prenatal screening we’re doing, other than the “Jewish” genetic tests I had prior to conceiving) because I’m a worrier and finding out that the fetus is normal will hopefully lessen some of my worrying, and because we think that we need to decide whether we’re prepared and capable to raise a disabled child, and because the screening also can catch really terrible disorders like spina bifida.

    That said, it was a difficult decision (for me in particular) to decide to do the screening, and it will become incredibly more difficult if the tests come back abnormal. The post at Pandagon and discussion here have been helpful and kind of distressing.

  17. Amanda Marcotte
    Amanda Marcotte March 12, 2007 at 11:48 am |

    Irene, reopening the debate about getting rid of public schools and letting the roads go to rot so you can pay less taxes hardly seems appropriate here.

  18. Amanda Marcotte
    Amanda Marcotte March 12, 2007 at 11:58 am |

    But I also don’t really think there’s a “wrong” reason for having an abortion, at least as objectively measured.

    Pretty much. I agree with Michael that anyone who aborts a pregnancy because of their prejudice against people with Down’s is probably not the ideal parent for a child with Down’s anyway. I completely sympathize with the fact that people who have “wrong” reasons for abortion tend to be the products of wrong environments—they learned a prejudice or they live in such a sexist culture that having a daugher could realistically devastate their family—and coerced childbirth is never the solution.

  19. Tapetum
    Tapetum March 12, 2007 at 12:00 pm |

    Rather than thinking of healthcare as a right, I was more made aware of the fundamental problem with the notion of requiring women to bear children with potentially expensive medical problems without having any guaranteed medical care for the children – since many of the same people who are much opposed to abortion under these circumstances, are also opposed to society providing medical support.

    Which, by their own logic, would mean that every time you have sex, you are consenting to spending up to several million dollars in health care.

  20. irenekaoru
    irenekaoru March 12, 2007 at 12:09 pm |

    Irene, reopening the debate about getting rid of public schools and letting the roads go to rot so you can pay less taxes hardly seems appropriate here.

    Amanda: I agree, though not sure where that came from. My comments mentioned neither and were quite respectfully directed at identifying different, tangled, issues inherent in this topic.

    Tapetum: Which, by their own logic, would mean that every time you have sex, you are consenting to spending up to several million dollars in health care.

    Amazing, right? Wouldn’t it make some more sense for society to provide or subsidize birth control and more comprehensive sex ed? It would probably save millions.

  21. Amanda Marcotte
    Amanda Marcotte March 12, 2007 at 12:17 pm |

    Irene, I’m being snarky and making the point that the only social net that ever seems to be controversial is the one in place for poor people, but middle class rights to assistance in having children provided by the state—particularly the right to have the state educate your child, the right to have the state provide roads so you can drive to work to make money to support your child, the right to have the state regulate food and environmental safety so you can keep your child healthy—don’t come into question. To say that women don’t have a right to social support for their child-rearing is technically an attack on the middle class entitlements you enjoy but maybe aren’t thinking of.

  22. DAS
    DAS March 12, 2007 at 12:21 pm |

    Certainly, he argues, when painful and life-threatening genetic disorders such as Tay-Sachs disease can be eradicated through prenatal testing and abortion, that is an unqualified good. But what of Down syndrome? Or deafness? Or autism? These are all disorders that carry a lot of fear, a lot of difference, a lot of heartache.

    FWIW, in Jewish moral law, there is a big distinction here: how can you fully judge the quality of life of someone else? And since you cannot in general, how is it your place to make decisions as to a particular life is worth living? While in some cases, we might say it is rather self-evident (e.g. Tay-Sachs), in others, not so much, as the good Prof. points out.

    If a given person doesn’t want to have a baby with DS, female genetalia, or blue eyes why should they be forced to carry a fetus with that characteristic? – Dianne

    However, even as I subscribe to a morality that would say all such are wrong reasons to have abortions, I would be loath to restrict abortions in the case of DS or blue eyes, for example. Sex selective abortion is another issue: to reduce the number of females (or males) may very well have detrimental effects on society since we humans like to pair up and most of us discriminate in that pairing on the basis of sex — so having too few males or females is something about which society might have a concern and reason to regulate abortion.

  23. Roy
    Roy March 12, 2007 at 12:51 pm |

    Sex selective abortion is another issue: to reduce the number of females (or males) may very well have detrimental effects on society since we humans like to pair up and most of us discriminate in that pairing on the basis of sex — so having too few males or females is something about which society might have a concern and reason to regulate abortion.

    I can’t agree.
    First, from a strictly practical standpoint, how would you even enforce such a law?
    Second, I don’t think that “because it might mean that people have a hard time finding someone they want to pair off with” is a compelling reason to restrict or legislate. The argument could, after all, be made that maybe it’d be better for society if people didn’t make their choice for partnering off based on sex. I’m not saying that’s practical or likely, but I certainly think that a lot of people would probably be a lot happier if they were more concerned about people as people, and less worried about sex, when it comes to partnering off.

    I think it’d be better- and more effective- to work on the reasons why a society might have people looking to abort based on the sex of the fetus rather than trying to prevent people from getting abortions for that reason.

  24. Kim
    Kim March 12, 2007 at 12:54 pm |

    I don’t trust all women to make the “right” decision—let’s face it, someone who is wealthy and aborting a pregnancy because of Down’s and is worried about what the neighbors will think is being an asshole—but to me the overruling principle is freedom. Most people will do the right thing if given the freedom (and implied respect) and the tools to do so.

    I don’t think that would make someone an asshole. When people get purposely pregnant and imagine their future child, nobody has happy visions of Down’s. Not everyone has it in them to raise a child with a serious disability. It’s tiring, it’s expensive and can wreak havoc on a marriage. And I’d prefer that a potential parent knew his or her limitations beforehand, for the sake of all involved.

  25. beatrice
    beatrice March 12, 2007 at 12:56 pm |

    I ended a pregnancy at 14 weeks, after a CVS showed that the fetus had Trisomy 13.
    I didn’t know what Trisomy 13 was, when I got the test results. Like so many other people, I thought the worst thing I had to worry about was Down Syndrome. This is why I get so pissed off when only Down Syndrome is mentioned when discussing prenatal testing. The tests that are run – the triple screen, the AFP, the NT measurement, the CVS, the amnio – screen for much more than Down Syndrome. They screen for a whole variety of chromosomal defects, most of which are absolutely and always fatal.
    “Required testing for Down Syndrome” is what I keep reading about. But I think it’s misleading – the testing is for all chromosomal abnormalities. I wish disorders like T13 or T18 would even be mentioned, because it makes condemning people who have the tests and elect to terminate a lot more difficult.

  26. Red Stapler
    Red Stapler March 12, 2007 at 1:00 pm |

    My aunt was a teacher for DS and high-functioning mentally challenged kids. She loved her kids, and they loved her. Some of them showed up at her mother’s funeral, and then at her funeral.

    She and my mother got into an argument once over the decision to abort a fetus that tests had shown to be DS or similar. My mom knew without a doubt she would abort in those circumstances, whereas my aunt was appalled by the suggestion. (The irony of course being that my aunt had borne three healthy sons, and my mother had difficulty carrying to term.)

    As it was, I was very sick as a baby, requiring many surgeries and months-long stays in hospital. If my parents had known sooner abbut the heart defects I had, and chosen to abort me, I would understand completely.

    Having a baby is difficult enough as it is, there’s no reason to take on the extra burden of disease or developmental disability.

  27. Red Stapler
    Red Stapler March 12, 2007 at 1:00 pm |

    My aunt was a teacher for DS and high-functioning mentally challenged kids. She loved her kids, and they loved her. Some of them showed up at her mother’s funeral, and then at her funeral.

    She and my mother got into an argument once over the decision to abort a fetus that tests had shown to be DS or similar. My mom knew without a doubt she would abort in those circumstances, whereas my aunt was appalled by the suggestion. (The irony of course being that my aunt had borne three healthy sons, and my mother had difficulty carrying to term.)

    As it was, I was very sick as a baby, requiring many surgeries and months-long stays in hospital. If my parents had known sooner about the heart defects I had, and chosen to abort me, I would understand completely.

    Having a baby is difficult enough as it is, there’s no reason to take on the extra burden of disease or developmental disability.

  28. Red Stapler
    Red Stapler March 12, 2007 at 1:01 pm |

    Gah, apologies for the double post.

  29. trishka
    trishka March 12, 2007 at 1:05 pm |

    i may be opening myself up here, but here goes anyway.

    this post hits close to home for me, because i got pregnant at age 39, and was therefore at greater risk of conceiving a child with DS. my husband & i talked the issue over at great length, and opted to have genetic testing done via amniocentesis.

    the tests came back completely normal, which was a tremendous relief, and now we have a lovely 10month old happy healthy son. however, we decided going in that if we were going to do the tests, that meant we would (most likely) terminate the pregnancy if it came back positive for DS or other genetic defects.

    it was a very tough process. i didn’t breathe a sigh of relief and truly believe “okay, this baby is going to happen” until after the amnio results came back. which is a much longer period than the first trimester which is the usual window of uncertainty in a pregnancy (high miscarriage risk, which i also was due to my age.) never mind the whole miscarriage risk associated with the amnio itself, which was scary.

    on the other hand, i didn’t ever worry about what the neighbors thought, so maybe that doesn’t make my decision quite as wrong, as far as amanda is concerned. i don’t know.

    i guess i’m not getting where the judgment is coming from. my husband & i did a lot of soul searching, and yes people with DS can lead happy fulfilling lives (and we are wealthy enough to have access to the resources to make it so), but they’re also more work to take care of, as children and to a large extent as adults.

    and my husband and i decided that we weren’t up for the task. in all honesty. heck, it’s all i can do to handle one active healthy baby with no genetic defects! but we can handle what we’ve got and aren’t going any further.

    and i guess this means i’m prejudiced against DS people, since i’m pre-judging that a DS baby would entail a great deal more work & attention than a non-DS baby would. and furthermore, that extra work would be the tipping point against parenthood for me.

    does this make me an a&shole in your eyes, amanda?

  30. Nausicaa
    Nausicaa March 12, 2007 at 1:12 pm |

    Well, personally I must say I’d abort a child with Down syndrome. Probably even if I had money to care for it. That’s simply because for me cognitive ability is the most important trait in a person. Somebody said that to do this is being an asshole, and I don’t understand why. I think nobody here has a real friend with Down syndrome, that is friend with whom he can interact equally. That’s exactly because developmentally challenged people are just that – very different. So it would be (at least for me) a lie to say that I’d like my child to be like that. I want to interact with him like with intellectually equal human being, not somebody so vastly different from me as developmentally challenged people sometimes are. All what I said relates only to cognitive disability or serious mental illness, I’d never think of aborting a fetus who’s be deaf or blind or anything else.

  31. Erika
    Erika March 12, 2007 at 1:44 pm |

    the only social net that ever seems to be controversial is the one in place for poor people

    middle class rights to assistance in having children provided by the state—particularly the right to have the state educate your child, the right to have the state provide roads so you can drive to work to make money to support your child, the right to have the state regulate food and environmental safety so you can keep your child healthy

    The reason these supports don’t come into question is because they benefit everyone, not just the middle class. Poor people benefit from public schools, roads, and food/environmental safety as well. The primary reason why I personally oppose direct assistance to poor families in the form of cutting a check every month (I do support universal health care, low income housing, and food stamps) is that I think people should be forced to choose whether to have a child and whether to have one child or many children. In my opinion, no choice/no sacrifice == many more unsuitable parents/unsustainable families.

  32. Mnemosyne
    Mnemosyne March 12, 2007 at 1:44 pm |

    Second, I don’t think that “because it might mean that people have a hard time finding someone they want to pair off with” is a compelling reason to restrict or legislate.

    The fear is that it will lead to social instability, as men are unable to find wives and start stealing them from one another. It’s already happening in China to some extent — the illegal wife trade is very lucrative.

    In a fully industrialized nation it may be less of a concern, but places like China and India are having some social instability problems because of sex-selective abortions.

  33. Roy
    Roy March 12, 2007 at 1:55 pm |

    Mnemosyne: Yeah, I figured that was what was being pointed to- I’m aware that China, in particular, is facing significant problems because there were so many women receiving abortions when they found out they were having female children.
    I just don’t think that restricting abortion is the right way to go in those cases. Again, from a purely practical point of view- how would you even begin to enforce a law that prohibits abortion based on the sex of the fetus without banning abortion out-right?
    That’s a nightmare waiting to happen, right there. The only ways that I can think of to enforce such a law would involve fairly draconian measures. Banning abortion based on the sex of the fetus isn’t going to prevent a smart woman from getting an abortion, it’s just going to make her lie about the reason.

  34. Dianne
    Dianne March 12, 2007 at 2:15 pm |

    trishka: Me too. I didn’t feel like I was “really” pregnant, as in going to have a baby, until the amnio results came back. In fact, I didn’t tell anyone that I was pregnant until the results came back. If the results had been different, shown Down’s or even an apparently balanced translocation, I’d probably have had an abortion. (I can’t say for absolute certainty what I would have done for something that didn’t happen, but I’m pretty sure that that’s the decision I would have made*.) I wouldn’t think any the less of someone who made the opposite decision and decided to continue the pregnancy even if the fetus showed a problem. But I wouldn’t think them any “better” than me either.

    Incidently, I think you misread Amanda’s intent. I think she was saying that people who abort a fetus with DS because they’d be embarrassed for the neighbors to see them with a DS child are acting badly. But my interpretation could be wrong too.

    *BTW: I’m saying “I” not “we” even though I would have made this decision only after discussion with my partner and strong consideration for his views on the subject because, in the end, it would be me that got the surgery so I’m the one who has to consent to lie down on the operating table. Likewise, if he were considering vasectomy I hope he would ask my opinion, but I couldn’t make the decision for him. (And other rants on bodily integrity.)

  35. beatrice
    beatrice March 12, 2007 at 2:17 pm |

    I’m interested that the mental/cognative disability part of DS is what’s being brought up as the main issue. In my experience, a lot of people with DS suffer from serious health problems, including fatal heart defects, lung problems, and life-threatening digestive issues. That would be of larger concern to me than the cognative and developmental disabilities.
    Of course, prenatal testing can’t show the extent to which the chromosomal defect will affect the baby or child. They could have “mild” DS – as Dr. Berube’s son apparently does – or be affected catastrophically and live only a few days. There’s no way to tell until after birth. I think a lot of people tend to see Corky from “Life Goes On” as the typical person with DS, which is tremendously misleading. The mental and developmental retardation is only a part – an important part, but just a part – of Down Syndrome.

  36. DAS
    DAS March 12, 2007 at 2:20 pm |

    Again, from a purely practical point of view- how would you even begin to enforce a law that prohibits abortion based on the sex of the fetus without banning abortion out-right? – Roy

    That’s why in practice I’d be against having such legislation. I just wanted to point out that society has a vested interest in prohibiting abortions for the purposes of sex selection in a way that it does not have such an interest in prohibiting abortion in almost every other case.

  37. Kat
    Kat March 12, 2007 at 2:59 pm |

    I turned 35 during my last pregnancy, and was given the option to have an amnio. I was not thrilled about the procedure itself or the risk, so instead my doctor sent me for genetic counseling. Looking at my medical chart and the ultrasound pictures, the doctor was able to rule out DS based on anatomical structures (something to do with the shape of the feet). No amnio needed. Its all about determining what your risk is.

    For me, it was important to know what I was dealing with. It would have given me some time to accept that diagnosis and prepare. I already had a child at home who did have a disability (autism). We did not realize there was anything “wrong” until he was three, and the autism diagnosis didn’t follow until he was 5. Sometimes I wonder what we could have done for him had we known earlier. Certainly, I would have felt a lot less guilt when he failed to hit certain milestones (everyone, including me, was just fine blaming that on poor mothering). One thing everyone seems to agree on is that early intervention is the key. Knowing while I was still pregnant… that may have given us valuable opportunities to help him.

    On the other hand, it would have also given me time to decide whether or not I was up to the job of raising a child with a disability. It is a little unnerving to in hindsight to think that you may have aborted a child you now have and I feel a little guilty admitting that because of course I love my son with all my heart. But it has been a hard road–financially, emotionally, etc.–and not necessarily one I would have chosen for myself or that I’m particularly qualified for.

  38. Rachel
    Rachel March 12, 2007 at 3:12 pm |

    Pansy P referred to

    really terrible disorders like spina bifida

    Well, I do hope the genetic testing folks give you a little more information about spina bifida, because it’s not quite the across-the-board death sentence you seem to think it is.

    If anyone’s interested in a feminist/disability rights look at prenatal testing, I recommend picking up just about anything by Marsha Saxton – who, by the way, has spina bifida – on this topic. This one, for example.

  39. trishka
    trishka March 12, 2007 at 3:33 pm |

    dianne, thanks for the clarification on how you read amanda’s intent. that makes more sense to me.

    still, i wonder if it isn’t something of a strawperson. i mean honestly, how likely is it that a woman would chose to terminate a pregnancy based on no other criterion than “what the neighbors would think.” if she (& presumably her partner) were totally prepared to care for a child with DS or other disability, and WANTED to have the child, but, oh gosh, how will we explain it to the neighbors so we’d better have an abortion. well. that’ just doesn’t sound all that plausible to me.

    though who knows. more things under heaven & earth, horatio, and all that.

  40. Mnemosyne
    Mnemosyne March 12, 2007 at 3:34 pm |

    I just don’t think that restricting abortion is the right way to go in those cases. Again, from a purely practical point of view- how would you even begin to enforce a law that prohibits abortion based on the sex of the fetus without banning abortion out-right?

    I don’t think there should be laws against it — it’s not terribly practical to try and legislate it. Hopefully a health education initiative (like the ones they have for AIDS, etc.) would take care of the majority of it, though you’d get stuck with a few hard cases who just wouldn’t change their minds.

  41. Mighty Ponygirl
    Mighty Ponygirl March 12, 2007 at 3:43 pm |

    People should be allowed to make practical, rational decisions about their ability to care for a child. That goes for special challenges physically, emotionally, and mentally.

    I bristle a bit when people talk about how women shouldn’t abort their fetuses for abnormalities when in reality some of these abnormalities can be completely unworkable for a woman for any number of reasons: usually financially. And while it’s all well and good to declare that society needs to step up and provide better support for the rearing of special-needs children, we shouldn’t predicate the demands of a woman’s life and wellbeing on the idea that if enough of them suffer horrible financial/emotional/marital ruin because they did the right thing, that the American public will magically snap out of their American Idol comas and demand a change to the system.

  42. Dianne
    Dianne March 12, 2007 at 3:47 pm |

    how likely is it that a woman would chose to terminate a pregnancy based on no other criterion than “what the neighbors would think.”

    I don’t know. Personally, I don’t much care what the neighbors think as long as they don’t show up at my doorstep with torches and pitchforks, but I understand that I may be somewhat unusual in this regard…Maybe for some people being seen with a healthy baby is a significant part of the joy of child rearing. Sounds like an unfortunate view of life to me, but who asked me anyway?

  43. Joe
    Joe March 12, 2007 at 3:50 pm |

    Quick question, when you say you support the right to terminate a pregnancy for any reason up to viability do you mean that you think it’s a good idea? Or that you think people have the right to make bad decisions?

    I’m not trying to be a troll, the former is my opinion and I’m just curious if you agree.

    My next thought and I have no answer, is where to define viable and what to do about that.

    I guess I think women need to have the right to terminate a pregnancy but I think there is a differnce between 3 weeks and 38 weeks. And I’m not sure where the bright line is.

  44. wolfa
    wolfa March 12, 2007 at 4:02 pm |

    Is there a huge number of women (in good health, with perfectly healthy fetuses) who after being pregnant for 38 weeks suddenly say “Hey, wait a minute” and decide to have abortions? Are there a huge number of doctors who are willing to perform these imaginary very late term abortions?

    Sure, I think probably there’s a difference in aborting when you’re 8 weeks pregnant and when you’re 38. But trying to legislate away abortions in the 8th month is trying to solve a problem that doesn’t exist, while causing new problems.

  45. Jennifer
    Jennifer March 12, 2007 at 4:06 pm |

    # Nausicaa Says:
    Well, personally I must say I’d abort a child with Down syndrome. Probably even if I had money to care for it. That’s simply because for me cognitive ability is the most important trait in a person. Somebody said that to do this is being an asshole, and I don’t understand why. I think nobody here has a real friend with Down syndrome, that is friend with whom he can interact equally. That’s exactly because developmentally challenged people are just that – very different. So it would be (at least for me) a lie to say that I’d like my child to be like that. I want to interact with him like with intellectually equal human being, not somebody so vastly different from me as developmentally challenged people sometimes are. All what I said relates only to cognitive disability or serious mental illness, I’d never think of aborting a fetus who’s be deaf or blind or anything else.

    I second that. I know damn well that I could deal with some things (say, deafness) better than others, and mental disabilities are an area I cannot deal with. I know this from personal experience with various relatives, so I can’t lie to myself and say that if it was MY precious blood, I’d be different with it. I wouldn’t, and haven’t been. Plus I couldn’t give up the child to the state, knowing it probably wouldn’t be advocated for or adopted. The child would probably be better off dead than with me as its mother. Sad but true. (Luckily for all concerned, I don’t plan on having any kids anyway.)

    Of course, that doesn’t really help you avoid finding out 3 years later your kid is autistic and you’re stuck, of course. But if I could avoid the problem beforehand, I would.

  46. mythago
    mythago March 12, 2007 at 4:22 pm |

    Or that you think people have the right to make bad decisions?

    Is there anyone who DISAGREES that people have the right to make bad decisions? Anyone who is arguing that everyone should be forced on pain of imprisonment to make only good decisions? Yes, you’re trolling.

  47. twf
    twf March 12, 2007 at 4:47 pm |

    Women have the right to terminate a pregnancy for any reason. ANY reason. The talk about how sex-selective abortion is “against society’s interests” strikes me as similar to the argument some people make that abortion of white babies (or just American babies) is “against society’s interest” since economic growth will then require immigration (Note: I think immigration is a good thing; those making the argument think it’s a bad thing).

    I think Michael Berube and I agree on the remedies. If we think that the widespread abortion of fetuses with disabilities is a bad thing, increase the support for those raising children with disabilities and for adults with disabilities. Similarly, in places where sex-selective abortion is widespread, improve the prospects of girls and women. This has to be handled on the macro level; guilt-tripping individual families for their decisions is not the solution, especially given the low levels of support they currently have..

    On a more personal note, my husband and I recently had a conversation about whether I, personally, would undergo genetic testing if I were to become pregnant. We agreed that the genetic testing only made sense if the results would have an effect on our actions. We then went on to a hypothetical situation: positive results for Down Syndrome. My husband would encourage me to terminate the pregnancy. I would choose to continue it. This argument lasted several days and was putting a strain on our marriage. We ended the conversation in order to end the stress but never came to a consensus. I have not yet become pregnant since beginning my relationship with my husband, so it’s not a real problem. Yet.

  48. Perkyshai
    Perkyshai March 12, 2007 at 4:56 pm |

    “strengthening the social safety net”
    I think that the statement speaks for itself in terms of help from strangers. People who choose to raise a child without a pre-existing social network have a harder time of it. I choose to be child-free but I love kids, and relish the opportunity to help others raise happy fulfulled children in an environment relatively safe and free of inimical stressors. I think that having the support of strangers who chose to be supportive is a right for both the supporters and the parent. The key is choice. Just as no-one has a right to compel parturition, the basic needs of a child (and parent) for socialization outside the nuclear family mold is implied in the idea of child rearing… its one more unwritten rule in the unwritten manual. It is compelled by biology, specifically in the way that we accrue and mimic behaviour. It is a right of any human, mandated by its existence and it’s not age restricted. Everyone of us has a right to experience the world and develop our ideas about it in a safe way. That happens less frequently than any of us wishes it did, and it’s something that needs to be part of the planning process in deciding to parent. Not unlike any of the other things that shoudl be involved in that sadly non-mandated process.

    The ‘road to gattaca’ eugenics scare is a worry, but again, I beleive that between human diversity and logic, we don’t have to worry too much about this kind of thing. That’s the whole point of “every child a wanted child”. Kids don’t come with a guarantee, they sometimes come into the world as a duplicate of the idealized infant and are later injured…frequently so, in fact.
    I figure seeing children as consequences, punishments, or superceding the rights of the mother are guarantees of resentment toward them, and that is a recipe for an incredibly corrosive cocktail of guilt and anger that cannot be good for either parenting or simply existing. Then, I also beleive that pro-lifers without adopted children are hypocrites who make the ‘innocent children’ that they claim to protect pay the price for their squeamishness and ignorance.

  49. emjaybee
    emjaybee March 12, 2007 at 5:03 pm |

    The thought of having a disabled child terrifies me, because…I have a so-far “normal” in every way kid, who’s fairly laid back, and it’s still so hard I want to lay down and die sometimes. A child with a serious disability would mean bankruptcy, unemployment, welfare, and endless worry for us; which is not that child’s fault, in any way, but is, still, utterly terrifying. Those wonderful books about wonderful kids who just happen to have a disability are generally written by middle class white parents with knowledge and resources. The rest of us have a harder time feeling anything but despair at the prospect.

    I had a mentally retarded great uncle who was sent away at 15 or so when the family couldn’t handle him anymore; he died living with a foster family, all alone, in his 60s, of an untreated infection. Who knows what he suffered before that, or what he thought when his family sent him away. No one had the resources to care for him. Would a child of mine have the same fate once I die? It seems terrifyingly probable.

    Until the parents of handicapped kids have a reasonable certainty that their kids will get treatment and safety throughout their lives, then there isn’t much chance of a discussion that really explores the possibilities for good lives for disabled kids born in poverty.

  50. litbrit
    litbrit March 12, 2007 at 5:04 pm |

    All three of my boys are severely ADHD and must take medication in order to focus on one thing for more than two nanoseconds. My middle son has severe allergies; my third son was born with aural atresia and microtia, meaning he is completely deaf in his right ear (no ear canal or ear drum), and he also is profoundly speech-delayed. Complicating all this is the boys’ very high IQ’s, and I say “complicating” for a reason: combine extreme curiosity and mental inventiveness with manic activity levels and virtually no input from the frontal-lobes’ impulse-controlling and organizing mechanisms and you get, well, you can probably imagine what I’ve got on my hands.

    Speech therapy (one of numerous services our policy does not cover) for the youngest alone costs me $500 per month out-of-pocket. Our medical insurance bill is astronomical, but we need the coverage because the accident-proneness of ADHD boys is notorious, and expenditures for their meds, which even with insurance are stunningly expensive, would run into the thousands each month.

    I tell you these things as a feminist mother who underwent AFP and amniocentesis (all clear) yet gave birth to children with “issues” (ADHD is legally considered a disability; speech delay and deafness are too, obviously). Few people truly appreciate the financial impact that comes with raising healthy, “normal” children, much less kids who are neurologically or physically disabled. We are fortunate to be able to afford excellent care for our sons; without it, they might well be struggling with school, hating academia in general, and dropping out in the eighth grade, as my husband (also ADHD) did, back in the day when bright, hyperactive, out-of-the-box thinkers were beaten and humiliated in front of their classes. We are fortunate that I, as their mother and fierce advocate, know how to find information and answers–when and where they exist, I mean. Not everyone is as lucky.

    Therefore, I believe every woman must be able make the choice whether or not to have a baby–particularly one she knows to be disabled and may require lifetime, hands-on care and untold financial support–for herself, based on her situation, her finances, and most of all, her own wishes.

  51. ks
    ks March 12, 2007 at 6:59 pm |

    I’ll just second what Jennifer and Nausicaa said. I absolutely could not deal with a child with mental disabilities, and if I could find out ahead of time and prevent that, I absolutely would. My two bright, normal children are enough of a stress, both emotionally to me and to my marriage and financial, that I couldn’t even imagine being able to take care of a disabled child. I’m aware that probably makes me an asshole, but I know my limits and that’s one of them.

    However, if a woman does decide that she can handle something like that mentally and emotionally, then we as a society should definitely provide, at minimum, the financial safety net for her to do so.

  52. ninjanurse
    ninjanurse March 12, 2007 at 7:02 pm |

    reading all these comments it’s clear that in the real world people live with the consequences of their decisions. different people have different tolerances and abilities, and that includes ability to parent. as a nurse i can say that there is no social safety net that can even come close to what families and friends do for each other. we should support families who care for a child with special needs, and respect the decisions that women and their families make. they carry most of the responsibility, even with the best social services.

  53. Kat
    Kat March 12, 2007 at 9:03 pm |

    I like you ninjanurse. Well said.

  54. Gordon K
    Gordon K March 12, 2007 at 10:28 pm |

    still, i wonder if it isn’t something of a strawperson. i mean honestly, how likely is it that a woman would chose to terminate a pregnancy based on no other criterion than “what the neighbors would think.” if she (& presumably her partner) were totally prepared to care for a child with DS or other disability, and WANTED to have the child, but, oh gosh, how will we explain it to the neighbors so we’d better have an abortion. well. that’ just doesn’t sound all that plausible to me.

    People don’t ‘get’ disability until they see it up close. I know my parents went through the usual freaking/grieving stage when I was diagnosed (not until age 3) – there’s a whole lot of uncertainty involved, especially when the disability in question is extremely rare. There is a test for my disorder, though it’s not standard. If it were, and they had known in advance, I don’t know what route they would have taken – it’s never something I’ve asked. But it would be a pity if they had decided that the fact that they were unprepared for a disabled son meant that they should abort, because they did a fine job raising me.

    I don’t think restricting people’s rights because of the bad choices they might make is a good idea, but “defect abortions” are not a topic I’m very happy about. And I would hate to see the (purely hypothetical) day when we eliminate disability from society, although I suppose I wouldn’t be around if it did happen.

  55. Sauvage
    Sauvage March 13, 2007 at 12:02 am |

    I’m intrigued by the whole ‘freedom of the individual’ line that gets taken in these kinds of discussions. It’s not that I disagree, it’s just that we seem to assume that people’s desires (say, for a ‘normal’ kid) are neutral, possibly even naturally occurring. But for a lot of people, it would seem, those ‘neutral’ desires would lead them to at least consider aborting a foetus with disabilities, a desire that, as has been pointed out, operates in an almost ‘eugenic,’ ‘gattaca-esque’ fashion. I don’t really know where I stand on this issue, but I think it’s a whole lot more complicated than ‘would I or wouldn’t I because what allows me to say I would or wouldn’t isn’t neutral. It’s at the very least bound up with some really heavy-duty cultural stuff about normalcy, and the ‘tragedy’ of disability.

    I guess my point is that the desire to have a ‘normal’ kid doesn’t operate outside our culture’s take on disability and normalcy. As M Berube (sorry, don’t know how to acute my ‘e’s) said, “‘our fear of mental retardation is out of all proportion to the phenomenon itself, and… millions of “developmentally delayed” people can live happy and fulfilling lives — far happier and more fulfilling than most of us “normal” and “gifted” folk have been able to imagine.” This inability to imagine it isn’t just because we’re lacking in imagination. It’s also because so much of the talk circulating about disability is about the tragedy of it. And we need to be able to see how that feeds into the desire for normalcy.

    So we’re clear, I don’t think that being aware of this means a should or shouldn’t as far as abortion in the case of disability goes. I just think there’s more thinking to be done.

  56. Scorpio
    Scorpio March 13, 2007 at 12:15 am |

    One of the reasons I no longer contribute to the March of Dimes is because the organization promised to disband when polio could be stopped. Instead they adopted birth defects as a cause because the charity racket was too rich to just leave.

    The world will never have a population totally free of birth defects. There are too many causes, and with the strain on the environment, people’s reproductive capacity will continue to be stressed.

    So let the March of Dimes march on without me — they have a goal that is out of reach, so they can leech in perpetuity.

  57. Christopher
    Christopher March 13, 2007 at 4:24 am |

    I’d like to go back, if I may, to this:

    Interrobang said, “Then again, I’m quite firmly of the opinion that if somehow, magically, just like that, every baby born in the world was somehow free of congenital disease, disability, and defect, that would be an unqualified good thing, so what do I know?”

    and this:

    Brad said, “I think the author is being a bit disingenuous WRT mental disabilities in general. While it certainly is true that many people with mental disabilities can lead fulfilling lives, it is hardly universally true.

    As for the desireability of eliminating mental disabilities in general, it does seem like an unqualified good thing…”

    The problem with this stance is that it assumes that “mental disabilities” are all of a binary nature; you either have them or you don’t.

    And while this is pretty much true of Down Syndrome – either you have an extra chromosome or you don’t, it’s much less true of other disorders, like depression, Asperger’s Syndrome, and for all I know all the Autism Spectrum disorders.

    In any case, Asperger’s and depression are not binary, they’re analog; they come in all different amounts of severity, and it is possible for somebody to have all the symptoms of those “disorders” and yet not appear to be anything other then a slightly unusual “healthy” person, because of the mildness of the symptoms.

    Basically, it’s not even clear what it would MEAN for depression or Asperger’s to be eliminated, since there are so many borderline cases.

    Second, I really do buy into the idea that autistic and depressed people have a significantly different perspective on the world then normal people, and that in MILD form, both disorders can actually be more beneficial then detrimental.

    I mean, we all know about the tortured artist stereotype, and I think there’s some truth to it. As a person who suffers from depression, I know that laymen tend to underestimate how hard the disease makes it to do ANYTHING, let alone art, but I do still think there’s a sweet spot where you can be depressed enough to be able to see the world in a way that other people don’t, but not so depressed that life becomes unbearable.

    And while I may be wrong about depression, this sort of “sweet spot” definitely exists with Asperger’s.

    So I guess I can’t agree with the idea that eliminating mental disabilities is an “unqualified good thing”, because I’m not even sure there’s a solid enough criteria for what constitutes a mental disability for the goal of eliminating them to make sense.

    I mean, I’d be all for it if god really DIDN’T give us more then we could handle, if we were only as deppressed or autistic as we could stand to be while still gaining benefits of insight, but that’s really god’s job.

    I don’t think we’re at the point yet where we can even begin to make a go at it.

    Or, at the very least, we aren’t at the point where doing it would be an “unqualified” good.

  58. Elinor
    Elinor March 13, 2007 at 6:34 am |

    The primary reason why I personally oppose direct assistance to poor families in the form of cutting a check every month (I do support universal health care, low income housing, and food stamps) is that I think people should be forced to choose whether to have a child and whether to have one child or many children. In my opinion, no choice/no sacrifice == many more unsuitable parents/unsustainable families.

    I really don’t think it works that way. If it did, people on welfare in states with generous benefits would have more children than people on welfare in states with less generous benefits, and the poor in states/countries with no social safety net wouldn’t have children.

    “No sacrifice” is an imaginary situation when it comes to having and raising children. Children always consume their parents’ time, resources, energy, worry, etc.

    I can speak a little to the Canadian situation. Universal health insurance doesn’t cover everything here, by a long shot; therapy for autistic children, which is colossally expensive, is not covered by provincial health plans. IIRC, some parents recently took British Columbia to court on this — no luck. Resources for disabled children are pretty thin on the ground. Prospective parents face pretty much the same issues as they do in the States.

  59. Dan S.
    Dan S. March 13, 2007 at 7:51 am |

    Wandering a bit OT, but:
    I think people should be forced to choose whether to have a child and whether to have one child or many children. In my opinion, no choice/no sacrifice == many more unsuitable parents/unsustainable families.

    Of course, what’s meant here is that think poor people should be forced to choose (as is clearly indicated in the original comment – indeed, is the point – but it’s still important to say.

    My wife said something a bit ago that’s relevant here, based on her experience first as a babysitter and day-camp counselor in an rather affluent area, and then as a teacher in a impoverished and deeply troubled neighborhood. She doesn’t have any illusions about unsuitable parents – trust me, she doesn’t – but she pointed out that different parents are judged very differently. Mainstream society looks at a little black girl whose clothes are clean but worn, with carefully, highly labor-intensively braided hair, and sees only a mother that dresses their child in old clothes. It looks at a little (white) girl dressed in expensive new clothes and assumes that it’s seeing a good mother, despite the fact that in some cases the child is receiving little nurturing beyond the strictly material – in one extreme example, being left on its own while the parents go off on vacation.

  60. Perkyshai
    Perkyshai March 13, 2007 at 9:58 am |

    Dan S, I taught a little boy whose parents were deeply excited to have a son, who had no emotional or cultural tools to deal with the reality of their child and his multiple disabilities. Their idea of coping was to ignore him save for hiring a staff for him and isolating him with them in an upper storey of the house. They were extremely affluent, while his wheelchair and all assistance came from charitable organizations. They were not advocates for him, and were extraordinarily neglectful. The neglect at home made the work at school largely useless, we felt more like babysitters than teachers because there was no similar investment at home. To them, he was unwanted.

    This ties in somewhat to what Savage said earlier, in the discussion of will and sef determination for a parent relating their wanting a child to their wanting of a’normal’ child, and all that deviancy from that entails.
    All parenting, for any span of normal or gifted or challenged, has an aspect of advocacy to it. As a parent, the expectation of the general social framework is that you are an advocate for the child in your care. The schools, the legal system, all of it breaks down when that assumption fails. That’s why the wanted child thing is so critical. Care of any child is not a benign, removed process, it is an involved, life absorbing one, and it intensifies with every deviation from the bell curve in any direction. That’s why it is important to actively understand and accept a child with differences. These kids will have a harder time dealing with a world in which they are unusual, that assumes that differences are intolerable. If the parent is not commited to active, educated (whether self taught or otherwise) advocacy, then both the parent and the child will have a far far harder time of it. ADHD is an excellent example, considering the complexity of medication issues and higher IQ. Aspergers involves issues with socialization and participation that requires repeated behaviour modeling. This is not a schooling issue, it’s an issue that involves all aspects of a family’s life. Going into that without awareness and acceptance can be dangerous for the group. At some point all caregivers make that decision, whether to be caregivers, or to simply punch the clock. I suspect that it’s true with parents as well.

  61. Dianne
    Dianne March 13, 2007 at 10:44 am |

    Christopher: I would suggest that for conditions such as Asperger’s one could ask whether the conditions were truly examples of mental disabilities versus examples of the extreme edges of normal variation or maybe some mixture of the two. Of course, it’s not clear what a “cure” for Asperger’s would be. Some aspects of AS are obvious negatives (ie the clumsiness and sensory disintegration, both of which are a nothing but a nuisance and sometimes worse) but some are less so. Is it really a totally bad thing to be less sensitive to social signals? In some cases it is useful: it makes one less vulnerable to peer pressure, for example. And allows one to concentrate on other things than social connections. I’m not sure that giving up those aspects would be a good thing.

    That having been said and being a person with probable AS myself, I would not judge a person who had an abortion because they were carrying a fetus with AS negatively. It’s a hard life and raising a child with AS is difficult. Just…not without its positive aspects.

  62. L
    L March 13, 2007 at 11:24 am |

    I agree to every woman’s right to have an abortion at any time for any reason, but this discussion does make me sad. My best friend had Cystic Fibrosis. She was a strong woman who wrote a book before she died, published poetry, was an incredible friend and an inspiration. If her parents had aborted her due to her illness, my life would certainly be less rich.
    I do not know if I would be able to handle a child with a physical/metal problem. I see how it destroyed her parents after her death. But having known my friend makes me think about the issue in a different light.

  63. trishka
    trishka March 13, 2007 at 11:58 am |

    gordon, i don’t think that we’ll ever have a world without people w/ disabilities, because there are always going to be people who are willing and able to parent them, and do it well. (like your parents!)

    because there are people who say “i can handle raising a child of normal abilities, but the extra work that disabilities would bring with it is too much for me to take on” does not mean that there is a danger of everyone feeling that way, any more than the number of people that choose to not have kids at all means the human species is in any danger of dying out.

  64. Gordon K
    Gordon K March 13, 2007 at 3:52 pm |

    Trishka: the point I was trying to make is that my parents, like most parents, had no idea they could do it until they did. But here I was, and so they learned. The comment I quoted suggested that people who were ready to raise a disabled child would; but the thing is that people are generally completely unaware that they could until the situation comes. For a lot of people, it’s not a situation they ever considered might happen to them.

  65. mythago
    mythago March 13, 2007 at 4:52 pm |

    And while I may be wrong about depression, this sort of “sweet spot” definitely exists with Asperger’s.

    I have a daughter with Asperger’s. You are treading dangerously close to being one of the the deserving-a-punch-in-the-face, “they’re here to show us God’s love”, smiley happy types who don’t know what it’s like. Asperger’s is not simply being a brilliant computer nerd who needs a little help from Miss Manners. What you don’t read about in Newsweek is the physical disabilities that go along with it (trust me, not just a little clumsiness) and the other mental issues that tend to cluster with it, like ADD and dyspnea.

    So, while I get that you’re trying to point out that disability comes in degrees and is not all a horrible sentence of lifetime misery, please don’t try to prove your point by talking out of your ass.

  66. Cara-he
    Cara-he March 13, 2007 at 6:25 pm |

    “Second, I really do buy into the idea that autistic and depressed people have a significantly different perspective on the world then normal people, and that in MILD form, both disorders can actually be more beneficial then detrimental.

    I mean, we all know about the tortured artist stereotype, and I think there’s some truth to it. As a person who suffers from depression, I know that laymen tend to underestimate how hard the disease makes it to do ANYTHING, let alone art, but I do still think there’s a sweet spot where you can be depressed enough to be able to see the world in a way that other people don’t, but not so depressed that life becomes unbearable.”

    As a person with severe depression I am going to have to categorically disagree with these conclusions. While I understand that the POINT is that disabilities come in degrees, and that specific disabilities such as autism and ADHD are often found in individuals with other spectacular performance capabilities, it is rediculous to try to attribute those capabilities to the disability.

    That special viewpoint Christopher attributes to individuals with depression? It’s called empathy. Yes, personal suffering does raise awareness of external suffering, but I know plenty of people who are just as empathetic as I, but do not have to spend $400.00 a month on medication to alleviate their depression enough to function. Who do not have to see two therapists and a psychiatrist on a weekly basis. Who do not continually face the threat of being put on anti-psychotics (which, by the way, are also enormously expensive, particularly when, like myself, you miss the economic cutoffs on both sides for healthcare – I’m too poor to afford private, and too “wealthy” to qualify for governmental aid).

    Depression does not make me special, unique, or gifted. It causes me an enormous amount of pain, costs me a great deal of time and money, and it severely inhibits my ability to do the academic work that I am intellectually capable of (and that I am spiritually inspired to undertake as a Biblical archaeologist). It is a disability because it dis-ables me.

    I find it incredibly condescending to be told that my dis-order is beneficial, particularly by a person who claims to suffer from mild depression. There is another name for mild depression. It’s called a mood swing. When you are CLINICALLY diagnosed with depression, the effects go far beyond a periodic “sad” feeling into territory where you literally wake up every day feeling that life is something to be endured until you can go back to sleep again. There is nothing beneficial about wanting to spend your life unconscious.

    I am extremely fortunate that my disability is something that can be alleviated with medication and regular medical and psychological monitoring, but I have to state unequivically that I too wish that all disabilities could magically disappear. Were I not able to treat my disability, I would in fact prefer that my parents aborted me rather than forcing me to spend my life suffering out of some misguided idea that they deserved a biological child or that as a fetus I had some inherent “right” to be alive, regardless of my parent’s ability or resources to care for me. (And as an artist, I can tell you that it is not depression which produces functional art – my best and most critically acclaimed work has been produced while in treatment and on medication because I was mentally capable of doing the work and processing the emotions that viewers respond to)

  67. Christopher
    Christopher March 14, 2007 at 3:46 am |

    “Christopher: I would suggest that for conditions such as Asperger’s one could ask whether the conditions were truly examples of mental disabilities versus examples of the extreme edges of normal variation or maybe some mixture of the two.”

    Well, um, this is what I was trying to say… there’s no clear bright line separating “has Asperger’s” from “Is completely normal”… there’s some weird middle ground where a person could be either. So what would it mean for those people if Asperger’s “cured”?

    I find it incredibly condescending to be told that my dis-order is beneficial, particularly by a person who claims to suffer from mild depression. There is another name for mild depression. It’s called a mood swing. When you are CLINICALLY diagnosed with depression, the effects go far beyond a periodic “sad” feeling into territory where you literally wake up every day feeling that life is something to be endured until you can go back to sleep again. There is nothing beneficial about wanting to spend your life unconscious.

    Did I not explicitly say up there that for most of us, depression keeps us from doing anything, including art?

    Also, I never said I suffer from mild depression.

    I said, that as a person who suffers from depression, I know how hard depression can make it to do art.

    Or… you know, exactly what you’re acting like I don’t know.

    What, I gotta add clinical on every time I talk about myself?

    I’ve been on anti-depression meds since I was in fifth grade. I go off ‘em and I never want to get out of bed. I’ve felt this way on a flipping field trip to France with a lot of good friends.

    My mom takes a ton of anti-depressants and anti-pyschotics that cost $1000 dollars a month, and she sees a therapist once a week.

    And there was that guy who diagnosed me with Aspergers, but I’ve never followed up on it because

    A. Tests cost money, which I don’t have.

    B. If I have it, my symptoms are significantly more mild then, you know, the other three people I’ve known who had Asperger’s.

    My point is… I’ve never heard any scientist come up with a big bright solid line that differentiates DEPRESSION from persistant sadness, certainly not anything like an extra chromosome.

    As far as I can tell, the only difference between a “mood swing” and clinical depression is how much it hampers your ability to live life.

    Actually, as far as I’ve been able to tell the only difference between a person with Asperger’s and a “computer nerd who needs help from miss manners” is also one of degree, rather then of one having a big noticeable biological difference from the other

    If there IS in fact, a physiological difference feel free to tell me.

    I may be talking out of my ass, but it’s not because I have no experience.

    Me, I think it’s kinda condescending to act like a person who has a different view of mental illness then you do can’t POSSIBLY suffer from it, even when they explicitly say they do.

  68. MrSoul
    MrSoul March 15, 2007 at 10:05 am |

    Great post, Zuzu.

    My mother, a singer and musician with an enormous ego (repeatedly lauded for her beauty and talent nightly), a feminist before her time (this was 1956), multiply married, simply refused to believe what doctors said about me and CP. No child of HERS would be retarded, period. And she proceeded according to that assumption, much as Michael Berube has described his son learning French. It takes a certain EGO to totally buck the system, and I am sure MB enjoys doing it, too. ;) But not everyone is like that, which I fully realize.

    Nonetheless, my experience is real, and I think it bears repeating: she simply rejected the conventional wisdom she didn’t like, and accepted what made sense to her. Unfortunately, this still means she trusted doctors too much, when they wanted to do surgery and unnecessarily meddle with my body. But it also means that when they said I couldn’t go to a regular public school, she threw a nuclear-level fit, unlike anything the Ohio public school system had probably seen up until that time. She announced HER son, CP or not, was actually a GENIUS that I would blow the other children AWAY academically (such ego!) and intimidated them into thinking they might be denying an education to Albert Einstein himself, or somebody like that. Not surprisingly, I did very well in school. The teachers whispered to each other that I “was a genius”–and this was based on nothing more substantial than my mother’s emphatic insistence.

    So much is already decided, by parental expectations. For everyone, not just disabled people.

    I don’t think most people understand or appreciate the extent of that truth, because it DOES implicate everyone, and able-bodied people aren’t ready to admit that truth also applies to themselves, and what their parents expected of THEM. How shaped are we by the simple expectations of our class, gender, race, ability? It’s overwhelming to think about; it applies to every part of life.

    But that realization is what made me a political person, and a lefty in particular.

  69. MrSoul
    MrSoul March 15, 2007 at 10:34 am |

    I know damn well that I could deal with some things (say, deafness) better than others, and mental disabilities are an area I cannot deal with.

    I hope you won’t get too pissed off, when you get to be extremely old and possibly a bit addled, and people who think like you (your own family?), no longer want to deal with you.

    You’ll understand that, right? You won’t feel sadness when they want nothing more to do with you?

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