Genetic Outlaws

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Confessions of a Genetic Outlaw

EUGENICS BY DEFAULT. This emerging public consensus in favor of eugenics is not the product of any sort of reasoned debate. There has been no referendum, no debate in Congress, no move to amend the Constitution. It’s emerging from the collective force of countless decisions by loving and caring mothers and fathers, in consultation with conscientious medical professionals who are using the truly miraculous and astonishing discoveries of brilliant scientists plunging deeper and deeper into the mysteries of life. These people are not intentionally practicing eugenics in order to create a perfect master race. They are simply trying to alleviate potential suffering and protect the quality of the lives they are bringing into the world.

But it is time for us to acknowledge the collective effect of these private decisions. Do we truly endorse the implicit message we are sending to our disabled brothers and sisters—that our commitment to diversity does not extend to genetic diversity? We need to confront the disconnect between how we see ourselves—as an enlightened, liberal society committed to fully integrating people with disabilities in all sectors of life—and how people living with the disabilities we would identify for extinction must see us.

MAKING CHOICES .Perhaps if we honestly confront this disconnect, we could start providing some more informed support to those loving and caring parents who are making difficult decisions in the offices of those conscientious medical professionals. We might tell them that studies show that people living with disabilities judge the quality of their own lives much higher than others expect. We might share with them stories of the incredible grace, joy, and happiness that many parents of children with disabilities experience. And when we hear about parents driven to despair by the difficulties of caring for a child with a disability, we might start asking ourselves how many of those difficulties stem from the erosion of a societal consensus about our responsibility to care for the most vulnerable segments of our society, rather than from the disability itself.

I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a “cure” for my son’s Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, “But how will you know who I am, then?” And I would also think hard about whether the world would really be a better place without my son’s soft, gentle, deep, almond-shaped eyes.

This is someone who seems to have only passing acquaintance (if that) with specifically disability rights perspectives, but I’ve heard stories like hers before. Again and again. Of parents being shamed, humiliated, and pressured by doctors not to have children that doctors (in their so-called “wisdom,” which has been proven over and over again to be dangerously incorrect when compared to the views of actual disabled people) deem defective or of “low quality of life”.

That clearly and absolutely means children like me. And children like most of us, in the end, because this sort of thing never stops at the first people they target. Once all the most obvious things are screened out, there will be a new, tighter definition of what’s normal and what’s defective. And so on and so forth.

And parents who decide to have children like us anyway, will indeed be “genetic outlaws”, and may in the future even be forced rather than merely bullied and coerced into not having us.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

77 responses »

  1. We should get people to watch GATTACCA again. I think most people missed it the first time, or thought it was more sci-fi than reality…

  2. Oh, yeah, n. One of my favorite movies. I do wonder why they wear neckties when riding the rocket, at the end. Owhell, George Patton made his men wear neckties in combat…

    Seriously, this has been discussed in SF since way back when; “Beyond This Horizon” comes to mind. If the eugenicists get their way, where will they draw the line? Once they eliminate the obvious outliers I betcha they’ll start on people who are, uh, insufficiently handsome, or something.

    I think it was Poul Anderson who said something like, “The incidence of minor birth defects is 100%.

  3. I have actually seen a scary number of people who are eugenicizing (is that a word?) themselves, these days. I’m not talking about people who simply don’t want to have children or people who choose not to have their own biological children because they want to reduce population growth, but people who *want* children but apparently believe that their genes are inferior and defective and that it would be horrible of them to “pass on their problems to a new generation,” sometimes to the point of having themselves sterilized.

    Much of the time when we see it (although this may be just the circles I hang around in), it’s coming from people who have dealt with some kind of psychological distress and now believe they have “genes for depression” or “genes for anxiety” which will be passed onto their children. We knew someone who had a sibling diagnosed with schizophrenia and decided that she didn’t want to have children because she believed she was “carrying a schizophrenia gene.”

  4. I know to some curebie groups it is seen as ridiculous to imply that all this genetic research may not be used benevonently. That the very purpose for the research by some may indeed be to make sure that autism is cured by having no more autistics born. The propaganda coming out recently in videos and articles all seem to have a similar and disturbing theme. And the rhetoric is extreme and passionate as to arouse the senses of the readers and viewers. On the surface this may be seen as only a ploy to get more money – but they could do that without going to such extremes. So, perhaps it is a cover for the programming of the population to accept that prenatal testing is necessary once one is available. To which it is entirely possible in the near future that things like penalty taxes could be imposed on those radical parents who refuse prenatal testing or bans on them from reproducing.

  5. This is a kind of “morally mitigated intolerance” of the “enlightened mind” to some. I find it another great leap backwards to “summer camp at Mengele’s”. I would think it almost high school textbook knowledge by now too (since they mention sickle cell), that what may cause “anemia” (perhaps fatigueing but not worthy of destroying those who have it) is exactly what helps long term survival in terms of malarial infections. I don’t necessarily think we even need to justify a long term “benefit” of the disabled either. But I find it interesting how often even that is ignored in light of the “geewhiz” effect of a new screening technology. It’s like “let me give it a go” as if screening human embryos were no more than playing with the latest remote control toy during Christmas. Instead of breaking dolls, planes and trucks though during play, they are destroying people and types of people in the process who are alive. They devalue and bury a group/exile a section of human diversity or to put it in less buzz, “human differences”. I keep feeling like there is an entire generation that might not appreciate “Brave New World” futureshock. It isn’t just a fairy tale…it’s entirely possible now. Perhaps the most realistic sci-fi to date but the reality is definitely not as pretty. I don’t want “alpha, beta, gamma” children. I want *my* children. Here too, it is even moreso “our bodies!” (damnit!).

  6. I get pretty ranty on this. This “”morally” humanitarian nihilism” aka eugenics. I’m glad some see “screening” / just another friendly-family-doc-approved medicalized acronymn for the eugenics it is.

    It’s also funny how our family doctors, with my new daughter, kept telling Judy about mercury and fish and autism when she mentioned me. They are “behind” here to say the least. I sometimes feel like saying “Welcome to Cyfair, please turn your clocks back twenty years (by decree of our chamber of commerce’s daylight savings ordinance punishable by fines of up to $3.98, please see the Dishwasher/Cab Driver/Mailman/Policeman on duty in rear.)”.

  7. One argument I keep hearing is that, “Yes, well, diversity is fine and good, but is it really fair to subject people to the indignity and limitation of disability for the sake of maintaining this diversity?” Basically, this argument is suggesting that somehow anyone who would dare bring an imperfect child into the world is committing some sort of moral transgression and subjecting a person to horrible limitations and “defects” for the sake of some sort of aesthetic / political agenda.

    The arguments I’ve heard are also along the lines of, “Well, of course any good parent would send their child to school — how is that really any different from providing them with the best possible genetic start in life?”

    I think there’s a massive difference between educating someone to give them a better life and substituting some presumably “better” lives for other lives, but that’s just me. :/

  8. Zilari: Something I’ve noticed, is that people don’t seem to understand the difference between:

    1. Choosing one PERSON over another PERSON.

    2. Choosing to alter one person for what they see as “the better”.

    Now, I don’t agree that these alterations would be for “the better”. But I’ve seen a whole lot of people, in a whole lot of places, equate things like eugenic abortion with “giving a child a better chance in life”.

    This is not “giving a child a better chance in life” (even if you thought the previous child had a crummy chance) — it is giving one child no chance in life and giving a difference child a chance instead. People talk about it like it’s the same child. That’s eerie and bizarre.

  9. I read about Salvador Dalí, I think it was along the lines that his parents named him after his previously born and died-in-infancy brother. And this scarred him for life. It was considered a sick and neurotic thing that his parents did to him. So now people do something similar, only playing with the actual lives, not the names?!
    And what if the supposedly normal child turns out miserable, or a criminal… What I mean is, humans can’t tell what/how/who another human person is going to be, just from their genes. [This eugenics would be wrong even if it “worked perfectly”, but I don’t think it even works.]

  10. I recently posted about my own perceptions of eugenics. To me, it is reducing our (human) reproduction to something similar to breeding dogs, cattle, whatever. Frankly, I couldn’t go through with the euthanasia of two “defective” pups produced by my dogs, and they are both adored by their people now.
    Honestly, how can one person ever truly judge the quality of life of another? We all have unique experiences and expectations; what seems intolerable to one is second nature to another. Put in the simplest terms possible–Don’t tell me or anyone else that their life is not worth living.

  11. I was perfunctorily watching some mystery-forensics-crime-solver deal last night; the story was a true one about the discovered bodies of three babies — the woman who had given birth to them did so without medical assistance, and had kept their bodies for years and years and not mentioned them to anyone. At first I thought it was touching; it seemed that she was a scared teenager with a limited support system save a tyrannical father, and that the babies were stillborn, and that she had held onto them out of tenderness.

    As the story unraveled, however, it became clear that she had murdered the babies (each of her accounts about the births included the classic “I blacked out” — and lo and behold, each baby had a towel stuffed into its throat or evidence of some other means of deliberate suffocation). The woman was eventually charged with the murder of the children.

    Without her confession, there wouldn’t have been enough evidence to convict her of anything, since the bodies were so old it was impossible to tell whether they were born alive; the investigators said that the babies appeared “healthy”, however. And that got me thinking: If this woman had sought abortion, even “partial birth” abortion where the good doctor kills the full-term baby with scissors, her actions would have been perfectly legal — and if the babies were born disabled, “defective”, her actions would have been considered perfectly “merciful”.

    I also thought of another case I heard about a couple of years ago — two teenagers, boy and girl, unwanted pregnancy, girl consents to boy hitting her in belly to cause her to miscarry. She does, they’re charged with murder.

    Essentially, what they performed was a crude abortion.

    But if a doctor had performed the (somehow less brutal-sounding because it involves clean instruments?) abortion, it wouldn’t have been an issue. It is unsettling that the same action in principle — an act that is just as violent, just as harmful, just as deadly — can be softened and justified when it is sterilized and medicalized. I don’t mean for this to be an anti-abortion rant; I simply intend to illustrate that what good kind citizens find abominable in the actions of common vulgarians can be distilled into something acceptable if sanitized in the context of science. The medical model is a terrifying machine.

    It disgusts me that medical professionals bully and coerce (and yes, Amanda, those are exactly the words) and imply that to give birth to a disabled child — essentially “against medical advice”, ’cause when they screen for “problems” with the fetus, aren’t they looking for “something”? And if that “something” is there, isn’t it implied that one ought to DO something about it? Isn’t that the aim of screening in the first place? — is somehow irresponsible.

    Ay — this is a really disjointed post (sorry), but I’m creeped out in general . . . and Soapbox Mom, you’ve just unearthed some very unpleasant memories involving a number of farm kittens who were not nearly so fortunate as your pups. Akh. Heebie. Jeebie.

  12. I’m so sorry Evonne!
    Your story also brought a memory. My mom told me years ago that when her mother was buried back in 1964, she had requested that a small tin box be buried with her. It contained the body of a premature infant she had delivered more than 30 years previous that had not survived. Mind you, this baby was born at home, in the throes of the Great Depression. That child did not have a chance at survival, yet my Granny had felt close enough to it that she wanted it with her in her heaven.
    As for prenatal testing–I found it to be an unnerving yet ultimately comforting tool. If any of my children had had any sort of identifiable defect/disorder, it would have allowed me to prepare for their birth and upbringing–not their abortion.

  13. SM, I forgive you for the kittens thing. ; )

    Re: testing, I believe all this is said more eloquently above, but I reiterate and expand: one can never fully “prepare” for a child based on a medical diagnosis, since there’s no guarantee that a child will possess whatever pigeonholed characteristics are assigned to him/her simply because he/she “is this”/”has that”. Every child is different — not just the ones who are “different”.

    What I find disturbing is the possibility, as others mentioned here, of parents being made to feel that denying a child’s birth is “for the best”, to prevent perceived “suffering”. And, also mentioned, the — very possible, since it’s already happening with “pre-existing” conditions and insurance coverage — threat of penalties to parents who decide to give birth to children that they were cautioned might have “defects”. What if an insurance company were to deny payment for prenatal care/delivery/health care of the child based on knowledge of a pre-existing condition? What if genetic testing were made mandatory, and parents whose children had detectable “conditions” were warned by healthcare professionals that nobody would pay for them to have a disabled child, implying that the logical decision is to “try again” for a “normal” child? All of this is quite likely and probably already happening.

    General opinion has it that disabled kids are dealt a rougher hand in life — and so it’s best to prevent them living at all when possible. (One of my collections details a report from the UK about babies being aborted because of, among other things, “cleft lip and palate” and “deformities of feet”. I also heard in person about someone aborting a baby because the ultrasound showed he had nine fingers. This was accepted as the reasonable thing to do.) If having a rougher time of it is the factor at play, then why not counter “What if your baby would be born with a disability?” with “What if your baby would be born black?” “ugly?” “female?” ???? None of this is new.

    So, while the idea of “preparing” for an expected child is nice, you must realize that this stuff is a lot more sinister than choosing pink or blue.

  14. And let it be known that I’m not generally a conspiracy-theory kinda girl. But I’ve seen enough disgusting bigotry within the health care system to know that we are not safe inside this machine.

  15. Yeah, the “preparation” that a few parents engage in (that I have no problem with) is tiny compared to the enormous amounts of parents who are going to abort because they’re told it’s for the best or bullied/pressured/etc.

  16. I agree with what you say. It is a shame that this has happened, is happening, and will continue.
    We went through some routine genetics testing with my son, for Fragile X and something else, it escapes me at the moment. At any rate, he had no known disorders that could be identified with the type of tests being done. The geneticist’s office called to schedule more tests, and I figured that the data would be fed into the HGP database along with being included in his regular medical records, and that if a genetic predisposition for anything was found, that this could just possibly effect medical benefits, insurance, etc. in the future. I try not to be *too* paranoid about these things, but it all sounded a little hinky to me.
    We decided not to go further with genetics testing. Sometimes, ignorance is better. I didn’t want to know if he would be susceptible to cancer, or heart disease, or whatever. Let the chips fall where they may, ya know?

  17. In my opinion the main reason is just pure selfishness, If your being alive means that you need certain “stuff” that I want then you are in a sense depriving me of my “right” to life liberty and the pursuit of happiness. So isnt it my constituitional right to make sure that people like you (lets not talk about me) dont exist? The sad thing is that when I confront people with their attitude of ” why dont you want people that are ….” I get an immediate denial I had always had a problem with “why cant certain people accept me as I am?” It took years to realize that the main reason was that I insisted that EVERYONE has a right to live and participate in life and I had no guilt about confronting them with their attitudes.In other words I wasnt being NICE.
    And I made it clear that to get to know me meant getting to know my family and my friends. That was to big a risk for them to take.Their excuse ? I’m not being NICE rather than confront the fact that they would have to share their lives (and horrors maybe money) with people who they certainly didnt want to be on equal terms with.
    I think THAT is the main reason why people react when someone close to them has a child with a disability. Because then they will have to invest their lives in this child who as far as they are concerned will only drain them of their time energy and money. At least a healthy child will support them in their old age !! So what it comes down to is “If you have a disabiity you are stealing something that is rightfully MINE. Prove to me that you can contribute to my life (in a way that will make me rich) and I will allow you to live”

  18. It is disturbing to me the great number of people who seem to consider this sort of “genetic sorting” to be their “right” as a parent. Despite the fact that this technology has not existed for 99.999999999% of human history, it has suddenly become a “right” to choose a child in the same way you choose a car or a flavor of ice cream. Give an eager woman a choice between having a “normal” child and having a special needs child, and how many would willingly choose the latter? How many of us with amazing, beautiful, autistic children now would have been selected against if their parents had been given the opportunity? Our children would simply not exist, and I can’t get past that reality. If I had been given a choice- me, a person with probably more experience with special needs kids than your average parent- if I had been given that choice, considering my great ignorance about autism at the time- my child would never have come into this world. That’s why the choice CANNOT and SHOULD NOT be given especially as it concerns screening of embryos before IVF procedures because it is obvious that even those people with specific moral objections to abortions do not have the same objections to the screening of unimplanted embryos. Once we start deciding that certain types of people essentially have less worth than other types- even before they are born- then we have started down a path that can only lead to disaster.

  19. I’m pro-choice – and to me, this is anti-choice. In the opposite direction to what’s normally meant by that; the assumption is that the woman will have an abortion, and all the pressure is put on her to do that. Many people out there have never known someone with a disability (or at least a visible disability), and they’ve no counter to what the doctors tell them. Still, if a woman chooses to have an abortion, that’s her choice in the end – there’s some censure in the comments when you don’t know the full circumstances or the situation a woman may have been in.

    Berke^Amorpha – I’m one of those people. I love kids. I want kids. But genetics (and learned behaviours – my coping strategies are crap) mean that I have a good inkling that my child will have the same difficulties as I’ve had, and as far as I’m concerned that’s suffering. When I’ve spent a good portion of my life wanting to die, it seems rather hypocritical to bring a new life into the world. Am I wrong? Possibly. But that’s my view at the moment.

  20. And as far as being susceptible to cancer or heart disease goes (I don’t mean to pick on you, SM, but . . .), let the proverbial chips fall where they may indeed; some of my very favorite people fit those categories, and it’d be a damn shame (and I think they would agree) if they had never existed, even for a short time, even if a good deal of that time was painful, because there was certainly joy as well. I can’t think of a single “condition” that would justify passing judgment on another’s life. And that’s good, I suppose, ’cause once we perceive that one atypical/pathological condition is just too much to endure, who’s to say that other conditions won’t follow?

    And M — yeah, it’s your choice. No sense in having babies just for politics’ sake, if, as you say, your “coping strategies are crap”. But “suffering” or no, and your own impulses aside, if someone who doesn’t know you were to decide that it’s best that you don’t live, or that you’d never lived in the first place, I hope you’d take it as an insult.

  21. Kay: I find it really annoying when these discussions are taken into the realm of… sort of abstract divorced-from-reality descriptions that don’t question some of the essential assumptions about disability and such, but just take those as a given. And then go on about the “real issue” being whether an embryo is a person or not. I don’t know if there’s a word for that, but it’s not a discussion direction that makes sense to me, that whole discussion feels like something out of a college class or something.

  22. Re: the Alas post (Amanda, sorry I’m hogging your blog today) — yeah. To bring up the very momentous topic of eugenics and then hide behind the sublimated “I’m just saying an egg is not a person . . . nothing more” makes no sense to me; I find no reason to even discuss such an issue, let alone discuss it passionately, if your motivation is just some academic principle alone, and you’re making a point for making a point’s sake. I’d be more inclined to understand the passion behind an argument about comma placement or something. (This I *have* gotten passionate about; a comma hanging just so can physically hurt me.)

    I was satisfied with the responses from Ampersand (who is evidently a pretty cool *gal*, as it turns out? I might be wrong); I believe she covered the arguments I was straining to insert. GG’s most telling remarks had nothing to do with the egg = person debate at all; they were something to the effect of “Well, of course people with disabilities are just as worthy as everyone else . . . but surely they wouldn’t want to *wish* their disabilities on anybody” . . . and other comments that more than implied that he (she? I dunno) thought that genetic screening and prevention accordingly was a swell idea . . . and which therefore implied that (s)he does not view life with a disability as an equally worthy life. But each time anyone attempted to address the more fundamental views associated with the original post, GG fell back into the “Hey, take it easy, all I’m saying is an egg is not a person” mode. Frustrating indeed. Thanks for linking to it, Kay. Alas is pretty interesting . . . and now I’m just crawling with intellectual civility.

  23. Yeah. I replied a bit to some of the bad reasoning I saw in the second post, namely the continuing attitude that “preventing a disabled person” is the same as “preventing an impairment in an otherwise non-disabled person”.

    That same blog has something awhile before in it that talks about defining “personhood”, that veers occasionally into eerily Singerian territory. I’m actually trying to do a video on the subject of personhood because I don’t think I can do it in text alone.

    I don’t care if you “hog” my blog, I like reading the discussions, they make me think.

  24. Yeah. Yeah. That returns to the idea of substituting one person for another, of assuming Egg Number Two could produce the same individual as Egg Number One, only better.

    The video I’d like to see.

    And Kay, thanks (I meant to say before, since GG ignored you) for your attempt to bring the author’s background into the foreground, and the more fleshy motives to light — in a much more humanistic sense than what appears to be the fashionable trend of bashing, passive-aggresively, institutions like, for example, the Catholic church, in a way that’s so ridiculously rooted in stereotype that it doesn’t deserve to be called “liberal”. While I don’t believe that one’s background is necessarily a cut-and-dried representation of what one’s beliefs are supposed to encompass (I generally find very boring the “this thing happened to me, so now I’m for/against X” routine), it baffles me when folks get all worked up when they’re arguing about what they *don’t* believe in, when they’re denying that being human doesn’t even enter into the discussion.

  25. “even those people with specific moral objections to abortions do not have the same objections to the screening of unimplanted embryos.”

    In fact some people who believe life begins at conception (I assume I am not the only one?) are not all that in favor of Invitro Fertilization, precisely because many eggs are fertilized (basically, many persons are conceived) and not all are implanted and even fewer survive to be born. I wouldn’t go so far as to say the process shouldn’t exist at all, but I couldn’t in good conscience try it myself.

    Amanda, sorry if this is too far off-topic.

    I wish that the existence of a test could be separated from the likely use of that test for wrong purposes. I am not positive it can be separated, but it /should/ be. I think I would like to know whether our child (if we decide to have one) would likely be autistic or not.
    What I can’t decide, is whether it would be harder for two aspies to prepare ourselves for having an autistic child, or a “normal” one! (~_^)

  26. What confuses me is whether there are some disability rights activists who are simultaneously against the eugenics of disabled or potentially disabled offspring (genocide of a whole group of people) but are otherwise pro-choice.

    If so, then this would seem to imply that the rights of a disabled embryo are more important than the rights of a nondisabled embryo, because those are the rights being fought for (whereas, in the case of nondisabled embryos, it is the *mother’s* rights being fought for). In my view, either all human life has value inside and outside the womb, or it doesn’t, and it seems like a contradiction to be both anti-eugenics and pro-choice.

  27. What people who’re pro-choice and anti-eugenics are differentiating between is the right to choose whether to have a child or not at all (whether that child is disabled or non-disabled, female or male, whatever), and the right to choose what kind of child you’re going to get (selecting for non-disabled, male, whatever, children).

    I think it’s imperative to separate those two things so that we know what we’re looking at is a “eugenics or not?” issue rather than an “abortion or not?” issue. Because they’re two separate (if linked) issues — just as premeditated “cold-blooded” killing, accidental killing, killing in self-defense, hate-crime killing, killing “in the heat of the moment,” killing death row prisoners, killing soldiers in the opposite side in wars, killing bystanders in wars, “mercy” killing, serial killing, suicide, and killing in the course of a genocide, are all considered very separate things, even if killing people is generally agreed to be a bad thing that should be avoided where possible (although different people disagree as to where the line is drawn between right and wrong — and I happen to believe some of the kinds designated as “okay” are not okay at all — nearly everyone agrees for instance that genocidal killing is wrong and killing in self-defense while not good can be understood in terms other than absolute evil).

  28. “What people who’re pro-choice and anti-eugenics are differentiating between is the right to choose whether to have a child or not at all (whether that child is disabled or non-disabled, female or male, whatever), and the right to choose what kind of child you’re going to get (selecting for non-disabled, male, whatever, children).”

    Yes, but some of the reasoning behind whether to terminate “any child” versus terminating “a disabled child” are the *same*:

    Child will be an emotional/financial burden.
    We don’t think we can handle said child.
    Child will not have all the advantages I believe all children should have.

    [And there are almost always not enough community supports both for mothers contemplating abortion of unwanted babies and mothers contemplating abortion of unwanted disabled babies]

    I’m sure there are other reasons, too, that I can’t think of off the top of my head. These are separate (but linked) issues, definitely.

    What I was saying is that it seems like a kind of reverse discrimination when there is a population that is being threatened, and then the population is championing their own causes including the right to be born, but that cause is part of a greater cause (“all life is worth living”), but then the fact that fetuses of all kinds are being aborted on demand is ignored as though it is a totally separate issue, when in fact it is linked. To some people linked more strongly than others.

    Not only that, but a certain portion of those unselected but nevertheless aborted fetuses also would have been born *autistic.*

    I think this is what I’m trying to say but my head is fuzzy right now:

    Sometimes people of widely different political camps can make strange but effective bedfellows. Those who champion the right to life *also* are by default championing the right for autistic children to be born in the future, and by remaining firmly in the pro-choice camp it might be that some disability rights activists are closing themselves off to potential allies.

  29. Frankly, the “eliminate all suffering” folks scare me a bit, in the sense that they can’t seem to see how destroying diversity and devaluing certain kinds of lives and restricting personal freedoms to the point where governments or tyrannical majorities are dictating what kinds of people are allowed to be brought into the world would put the entire population at greater risk of developing into an unstable and inefficient monoculture. THEN, I guarantee, the potential for even greater suffering would be immense.

    Some people I’ve talked to have this idea that it’s unethical to bring people into the world with any “limits” that can be prevented, but the fact is that whenever people are deciding their child’s characteristics based on what they think comprises the “best start in life”, they are acting under the constraints of their own consciousness, their upbringing, their political views, and their aesthetic preferences. Sure, I think it would be great if we could identify genes associated with cancer susceptibility and heart disease and tailor effective treatments to those who do possess such genes, but I think some people are stuck within this ridiculous realm wherein, once we eliminate things that *actually cause true suffering and death* (I see no reason, for instance, why a commitment to diversity requires a commitment to making sure the AIDS virus is preserved), are moving along a slippery slope wherein the tolerance for difference decreases as variations are perceived as worse than some other, more common configuration.

    And it won’t matter whether these things actually are “worse” — there is, in my mind, a definite place for the disease model in society, but as more and more actual diseases (AIDS, pneumonia, staph infection) are eliminated (note that this doesn’t mean “people with diseases” are eliminated), the definitions of “impairment” and “quality of life” are going to become even more delineated by people’s attitudes and by group consensus. There need to be checks and balances in place to prevent this sort of group consensus from becoming entrenched as a self-evident axiom.

    And it is also important to recognize that everyone has limits — it just seems that when your limits fall within the realm of the limits of the majority, they’re considered acceptable because society already has built-in provisions to accomodate those limits. So the “it’s unethical to bring people into the world if you can prevent limits” fails miserably when the double-standard is pointed out — this argument, when stripped of its trappings of “compassion”, comes down to, “We only want to accomodate certain kinds of people in the world, and people who need different accomodations might as well not exist because they’re just too much trouble.”

    Why is it considered okay to bring people into the world who:

    * Cannot perform dentistry on themselves

    * Need cars in order to get around on schedule (and how, aside from size, mechanical complexity, and speed, is a car different from a wheelchair?)

    * Might need glasses in order to see 3 feet in front of their face (though who knows, that might be the next eugenic abortion target)

    * Need someone else to do their taxes

    * Need someone to grow and harvest food for them

    * Need artificial illumination in order to make their way around (which, as we all know, is tremendously expensive and resource-intense)

    * Are so frail that they can’t withstand getting hit by a bus

    * Are pathologically dependent on certain kinds of social input

    * Require rigorous sanitation regimens (which could be described as “obsessive, repetitive rituals”) in order to keep from being destroyed by harmful pathogens

    * Require artificial innoculation in order to avoid being killed off by certain diseases

    * Are born completely unable to walk — even if they do eventually learn, how can we possibly allow this when even certain farm animals can stand up within hours?

    * Require things like “literacy” and “education” in order to obtain a job

    * Require lots and lots of abstract little pieces of paper (“money”) and complex constructs (“bank accounts”, “credit”) in order to obtain even the simplest of dwellings — how tragic that we can’t all just pop out of the womb able to build our own living quarters? The beavers must feel tremendous pity for us.

    * Require scuba tanks and snorkels in order to survive underwater for more than a few moments — definitely a tremendous limitation considering water covers the majority of the Earth.

    …but it is somehow not okay, or a “moral outrage”, or an “absurd example of political posturing” to bring a kid into the world who might not be able to speak, or who might develop in a different order than the typical kid?

    Some people try to turn this whole human-improvement (or human-therapeutic) thing into a black-and-white choice between a “limited” life and a life of what is supposedly “limited opportunity”. And that’s an utterly false dichotomy. The only way to remove all the limits associated with being a person would be to eliminate all persons from existence (and hey, that would definitely accomplish the “remove all suffering” goal at the same time). And somehow I don’t think that should be anyone’s goal — consciousness is a wonderful thing, and existence as a person is a wonderful thing, and the benefits and joy available to the living are far more compelling to me than a bland but painless nonexistence.

    You can’t have existence or personal identity without boundaries (though I’ve heard some arguments that seek to define the concept of personal identity out of existence, which seems to miss the point of individual consciousness being an emergent property that is as real as anything else to the person in possession of that identity, regardless of what the hardware it operates on can be reduced to), and in many ways I think the boundaries people start out life with by virtue of their genetic constitution are fairly trivial with regard to a person’s potential for a happy and satisfying and opportunity-laden existence.

    And of course, each and every one of us should be free to seek transcendence of our own self-perceived limits as we see fit, but that doesn’t mean we’re obligated to destroy aspects of ourselves that we like and benefit from because some of the things those positive aspects are inextricably tied to are inconvenient. If being autistic means I get to experience the world and my consciousness the way I experience it — which, in an optimal environment, is wonderful and completely functional for me (even though it doesn’t “look normal”) — I would rather take that, along with the challenges it comes with in non-optimal environments, over a coerced normalcy.

    And this doesn’t mean I think I’m better or superior, or that autistic people should be allowed to exist and nonautistic people shouldn’t (that would make me as hypocritical as anyone on the pro-cure side) — it just means that I think there is more than one valid way to exist, to function, and to have experiences.

  30. autiemom, I know a lot of pro-life and pro-choice people who work together on this. I don’t think that remaining in one camp means cutting yourself off from all your allies in another. Alliances mean alliances, not necessarily conversions. I would argue the same if a pro-choice person came on and said that everyone involved in this debate should be pro-choice because (…insert reason here, and I’m sure there are a ton that could be argued…).

    But I don’t buy the thing about people championing the right to life automatically championing the right for certain people to be born in the future.  It would be true if people’s views were totally ethically consistent, but in fact the eugenics stuff is one of the things that won over a lot of people who otherwise held totally pro-life philosophies, to say “Okay, in this one instance it makes sense for abortion to happen.”  Also, most pro-life people have no conception of the disability rights perspective, and often argue about these things in ways that further detract from the valuation of disabled people’s lives.  So the eugenics thing does need to be fought separately from the pro-life vs. pro-choice thing, and it needs to be argued to both pro-life and pro-choice people because neither one tends to totally get it.

  31. Hi, Autiemom — and hi again, Amanda ; )

    There are several posts floating around on Ragged Edge about the distinction between “pro-choice” and “anti-eugenics”, and actually some discussions involving feminist/pro-choice/disability-rights-supportive folks who cringe for whatever reason at the idea of associating themselves with pro-lifers. There are times when these two groups might have formed an impressive allied front, for example during the Terri Schiavo debate, but unfortunately stereotypes made that sticky. Feminist, liberal disability rights advocates didn’t care for the idea of being lumped in with (and likely drowned out by, since disability issues are generally pushed to the background) who they perceived as “religious”, “gun-toting”, “Republican”, “white-male-dominant”, etc. groups. It depresses the hell out of me that stereotypes are so divisive.

    I completely understand (and agree with) your assertions about the choice/eugenics divide actually placing a disabled embryo on a higher plane of “rights” in this sense. Hopefully everyone in this forum has accepted the idea that the superiority thing goes both ways, that it’s just as ridiculous to say a disabled person is superior to a non-disabled person as it is to say the opposite.

    I think that the feminist/pro-choice stance has its place in disability rights forums, though, in the sense that the original idea behind the whole muddied mess was that women should not live in fear of having their bodies controlled — i.e. raped, turned into baby-making machines, etc. — and that this should apply to disabled women as well. While I happen to be pro-life for a number of reasons, and I see exactly your point about the “emotional/financial burden, not being able to handle said child, child will not have all the advantages . . .” merging very readily into the disability spectrum (and have been trying to articulate that for a while — thanks), I do respect the original fundamentals of feminism and understand where people make the divide. I just wish that divide didn’t occur so often as a result of people harboring political and social stereotypes. Ohhh, how I loathe stereotypes! How revoltingly boring!!

  32. Autiemom: I don’t see the pro-life lobby as any kind of reliable ally for disabled people. They are overwhelmingly conservative, and would not have much sympathy for the radical ideas about disability that, for instance, Amanda argues for. Incidentally, Amanda, on this point:

    “What people who’re pro-choice and anti-eugenics are differentiating between is the right to choose whether to have a child or not at all (whether that child is disabled or non-disabled, female or male, whatever), and the right to choose what kind of child you’re going to get (selecting for non-disabled, male, whatever, children).”

    I think you’ve got that wrong. The correct differentiation, surely, is between the right of individual women to control their own fertility, which does mean controlling the kind of child you are likely to have, and the mass abortion of fetuses with disabilities that occurs in a disablist society such as ours. This division shift the focus away from the abortion issue IMO and towards the wider issues of discrimatory practices, structures and ideas in society in general.

    Incidentally, my blog now uses haloscan, which apparently is much easier to use. You don’t have to log in to make comments for a start!

  33. I agree that the eugenics issue is one that people will compromise on even through “default” and needs to be brought to the attention of both sides. The subtlety of the eugenics movement is what people really need to be educated about – especially how people are just being conditioned to accept genetic testing as a duty. (And I’m also one who believes that life starts at conception so that creates issues about creating embryos to pick and choose and potentially discard the ones no one wants).

  34. Redaspie’s and autiemom’s comments are both good examples of the exact reasons that these things need to be considered separately.

    As one person I know of put it, campaign against selective abortion from a disability-rights standpoint and people with standard-issue pro-life views will get on your case about “selective” while people with standard-issue pro-choice views will get on your case about “abortion”.

    The actual issue of whether selective/eugenic abortion is right or wrong gets totally lost in the ensuing battle between “A woman has an absolute right to abortion to control her own body under all circumstances, including selective abortion” and “A fetus has an absolute right to live under all circumstances, so we should be focusing on all abortion not just selective abortion”. Which means you’ll get standard-issue-feminist views arguing against standard-issue-pro-life views and the disability rights views on the whole matter are drowned out and condemned by both sides. It’s like the disability rights anti-eugenics perspective is seen as having nothing to add to the existing views because everyone’s already made up their minds.

    Meanwhile, the modern eugenics movement marches blithely on unchecked.

  35. Rocobley, you say, “They are overwhelmingly conservative, and would not have much sympathy for the radical ideas about disability . . .”

    Akh! See what I mean?! I hope that by “they” and “overwhelmingly” you mean simply to say that the majority of people who support the pro-life ticket tend to fall on the conservative end of the political spectrum. That may be true, in the sense of sheer numbers. But don’t lump folks into a “they”!! (Already I see readers conjuring visions of Bible-thumping, homosexual-persecuting, brown-folks-fearing Archie Bunker types . . .)

    I for one am not a Radical Conservative. I’m a conservative Radical. ; )

  36. Kay: I find it really annoying when these discussions are taken into the realm of… sort of abstract divorced-from-reality descriptions that don’t question some of the essential assumptions about disability and such, but just take those as a given. And then go on about the “real issue” being whether an embryo is a person or not. I don’t know if there’s a word for that, but it’s not a discussion direction that makes sense to me, that whole discussion feels like something out of a college class or something.

    Ballastexistenz: I find it really annoying too. I believe it’s an unwillingness to listen or inability to hear what is really being said by disabled folks about disabled lives. Or possibly it’s a more masculine way of understanding a topic (I’ve only observed men changing the subject in this way). Or because we’re talking about women’s experiences with pregnancy and choice maybe men don’t approach it in a practical way as easily as women, who can imagine the specifics all happening to their bodies and emotions. I don’t know the cause.

    What confuses me is whether there are some disability rights activists who are simultaneously against the eugenics of disabled or potentially disabled offspring (genocide of a whole group of people) but are otherwise pro-choice…. In my view, either all human life has value inside and outside the womb, or it doesn’t, and it seems like a contradiction to be both anti-eugenics and pro-choice.

    Autiemom: I guess I’m someone who confuses you then so I’ll try to explain my point of view. First, I don’t believe the fact that a fetus might have “value” means it has a right to be born over the woman’s choice to abort. “Value” does not mean an automatic right to exist over a woman’s choice no matter why value is attributed to that fetus. That’s the pro-choice part.

    Second, my anti-eugenics stance is that while a woman has a choice no matter why, I don’t believe choices involving eugenics are good choices. There are a number of reasons why I believe this, many involving the medical/scientific community not offering the woman a real choice.

    My beliefs, if taken as a consideration in how a woman chooses don’t provide any clear equation of what to do. No one ever said it should be easy to choose.

  37. Hi Amanda,

    I do see what you are saying, and I’m not trying to divert this subject into a pro-life topic, all the while letting the topic of eugenics get lost in the shuffle. The stance that you wrote about with my name attached to it–“A fetus has an absolute right to live under all circumstances, so we should be focusing on all abortion not just selective abortion”–is *not* my view. I didn’t say we should be shifting the focus off of eugenics and onto supporting pro-life activists instead.

    What I did say was that pro-lifers *could* be an ally of the autistic rights movement if we let them. Evonne pointed out that it is stereotyping that prevents groups like ours from reaching out to “them.” You pointed out that both the pro-lifers and the pro-choicers need to be educated because both still do not get it. I agree with that statement. There is still much to be done. But none of this means that one can’t be against eugenics while pointing out inconsistencies and double standards within one’s own cause when they occur.

    I was pointing out the double-standard of a scenario such as this: supporting an individual mother’s right to choose an abortion up until the point where it becomes known that that fetus happens to have an identified disability. Then all of a sudden an abortion for her becomes wrong. It’s still the same mother and the same fetus, but the rightness or wrongness of the act hinges on whether the baby is disabled. That means that before the disability was identified, the presumed nondisabled fetus didn’t have the same right to live as the newly identifed disabled fetus.

    And I stated that the reasons said mother might want to abort the fetus in either case might essentially be very similar: her own happiness and quality of life, the child’s happiness and quality of life, etc., etc.

    I hope this clarified somewhat my actual position on this issue.

  38. Pingback: Creative Destruction » Link Farm & Open Thread #35

  39. I am religious conservative in many ways, and once I sort of started to “get” the idea of diversity that disability-rights promote, I thought it made sense, even meshed with biblical ideas. If we are all made by God, in all sorts of bodies and minds, just as we should do right towards people of all races (etc.), then we should do right towards people of all physical and neurological types. I don’t see why it should not make sense. Am I missing something that should seem heretical?

    Of course, I also don’t understand nationalism, or the idea that the white north-american culture is a necessary component of protestant christianity that needs to be exported to other countries’ churches. Sorry for the tangent there, but those are some cultural things I could think of where I might disagree with a lot of religious conservatives, generally on what seem to me to be ideas invented by people.

    I don’t think that religious conservatives generally “hate brown people” (dude we are not all pat buchanan!); I know a lot of churches in this part of the “bible-belt” are providing english classes and other helpful services to the large numbers of Latin American immigrants who are appearing around here.

    But, moving even more off-topic, I have seen well-meaning people apply the same angel-myth to Mexicans (and not-so-well-meaning people practicing the usual demonization of Mexicans), that Amanda pointed out gets applied to Autistics.
    Thie woman was making a presentation to her classmates and she said things like “they are a gentle people”, and although I know what she meant (Mexican culture does value courtesy and being nice to your visitors), I donno, I felt funny about the way she said it.
    This whole thing seems very peculiar to me (I mean, people are people), although I guess it just shows the ‘depersonization of the Other’, or something.
    I never though I would really need all those post-modern words we learned in grad school…

    Anyway, I suppose it makes sense to consider eugenics separately, if that works better, adds clarity, etc… Personally I have a hard time separating things, I feel many issues sort of hyperlinked together, but that doesn’t mean it’s the most efficient way of dealing with them.

    Oh dear… I keep going off into so many multiple tangents… Hope it’s ok.

  40. Hi N. You wrote:

    “I also don’t understand nationalism, or the idea that the white north-american culture is a necessary component of protestant christianity.”

    I want to add:

    I don’t understand why “Christianity” is seen as a necessary component of “pro-life” either.

    So I wondered if there were groups calling themselves “pro-life atheists and agnostics,” and not to my surprise, there are. But, whenever the issue of “pro-life” comes up, you get responses like “they are overwhelmingly conservative,” and we all know that “conservative” is code for “Bible-thumping, homosexual-persecuting, brown-folks-fearing Archie Bunker types.”

    The fact is that the idea that everyone has a right to life inside and outside the womb need not have anything to do with God or the Bible. Just because the issue is discussed in the Bible, doesn’t mean that the Bible holds the key to understanding this issue. Fairness is fairness.

    This doesn’t seem fair or logical to me:

    “First, I don’t believe the fact that a fetus might have ‘value’ means it has a right to be born over the woman’s choice to abort. ‘Value’ does not mean an automatic right to exist over a woman’s choice no matter why value is attributed to that fetus.”

    I can rewrite this from the disability perspective, and suddenly no this is not right:

    “I don’t believe the fact that a disabled fetus might have ‘value’ means it has a right to be born over the woman’s choice to abort. ‘Disability value’ does not mean an automatic right to exist over a woman’s choice no matter why value is attributed to that fetus.”

    By this argument, any mother has *every right* to say that she will not carry a disabled fetus to term because her freedom of choice over carrying that pregnancy trumps the baby’s right to exist as a disabled person.

    That is why I don’t understand how these two ideas (pro-choice and anti-eugenics) can coexist in the *same individual*, which hearkens back to my very first comment on this topic. Now, just because I can’t see how the two ideas can coexist in the same individual without some kind of disconnect going on, that is not the same as saying that I think these two topics by necessity have to be discussed together or lumped into one another.

    So on that note, I’m signing of by echoing your own words:

    “Personally I have a hard time separating things, I feel many issues sort of hyperlinked together, but that doesn’t mean it’s the most efficient way of dealing with them.”

    Very well put.

  41. Here’s some blogging I’ve done on the book Schiltz has an essay in about medical eugenics: http://thegimpparade.blogspot.com/2006/08/pre-implantation-screening-debate.html

    Autiemom: As far as I can tell, you’ve undestood me exactly. I believe this: By this argument, any mother has *every right* to say that she will not carry a disabled fetus to term because her freedom of choice over carrying that pregnancy trumps the baby’s right to exist as a disabled person. Supporting choice generally does not mean I support every individual choice — Much like believing in free speech yet not liking what everyone says.

  42. Here’s how I am pro choice and anti eugenic abortions.

    Do you want a child? Yes or no? If you want a child, then you want the child you created. If you love the child/potential child you created, it is a wanted potential person. This is regardless of any genetic “cooties” this wanted pre-child may have. Though you didn’t conciously choose this particular gene combination, this fetus is the gift you received when you had sex & conceived.

    If you don’t want a child, it was a condom oopsies or whatever, fine. Abort. Be safe about it.

    But if you want a child until you find out the amnio was weird or there are suspicious features on ultrasound or whatever, uh-uh. That has nothing to do with choice of what your body does. That has to do with saying “well I only want a baby if it’s perfect”. Pure adolescent selfishness, quite honestly. And NO child is perfect.

    If you want a baby you want YOUR BABY. If you don’t you don’t. If you only want a perfect baby you are, quite frankly, a self centered snot, a eugenicist, or both. And yes, I have told people to their faces that this is exactly what they are.

  43. Kay, I think you’ve hit the nail on the head with that point.

    Amanda is correct to say that there is a real danger of the debate over eugenics is in danger of being lost in the battle between pro- and anti-abortion rights camps. However, I would argue that the high number of abortions of disabled fetuses simply reflect institutional discriminatory practices, structures and attitudes in society at large. Hence it is those other battles, such as employment discriminations, exclusion from the education system, institutionalisation of disabled people, negative media portrayals, and all the rest, that we should really be concentrating on. These battles all involve fighting for the rights of actual disabled people who are alive now, rather than the rights of disabled people who don’t actually exist yet. Once we start winning these battles then the rationale behind abortion of disabled fetuses en masse starts to crumble. Really, the only battle that I think is worth fighting on the eugenics front is against the attitudes of the medical establishment who clearly are in many cases pushing women into aborting disabled fetuses. The wider debate about whether women have a moral right to abort disabled fetuses is I think really an impossible one to resolve frankly, rather like the debate about abortion rights generally.

  44. Just got back to this after being out of the loop yesterday. Evonne, I don’t feel picked on at all. On a certain parents’ forum, well, that’s a whole different story. ;)
    I tend to agree with all that’s been said here on some levels.
    I don’t think that prenatal testing should be pushed as much as it is, but I gave birth to my last child at age 39, which is “advanced maternal age(!)” and statisically, the likelihood is greater that I could have conceived a child with Down’s Syndrome. For the record, I would not have aborted this child for that reason or any other. Kassiane touched on something important. Many women are simply not prepared to be a mother for whatever personal reasons they have. Eugenics strictly aside, I am pro-choice.
    Now for younger women in prime child-bearing years, I truly don’t see a need for most of the prenatal tesing being done, including ultrasounds. I had my first three kids in my twenties, and had a total of ONE ultrasound for all three pregnancies. It was done in the 7th month, when I was experiencing some very bad cramping.
    I think we have reached a dangerous level of interventions in something that for the most part requires very little interference or assistance. There is such a thing as too much information.

  45. Zilhari, very interesting read even if a little long. I wanted to comment a bit. When you say the “eliminate all suffering folks scare you”, I understand it in the sense of those who want to “eliminate all ‘types of people’ who suffer” and not just “eliminate (or aim to eliminate) most kinds of suffering) from a pathogen side. Many do not want to be infected with a pathogen and having a majority that axiomizes against it doesn’t seem too problematic. e.g.: polio. (is anyone complaining?) and most of us are opting for parents to give shots to children without their permission per se in response to the somewhat passé mercury debate.

    I do however think incidental suffering has value. Pain in and of itself is a useful feedback with some decent subconscious training involved. Pain creates subconscious fear which helps prevent future harm generally speaking. Although, there is a limit to how much each individual may want or be able to tolerate. So in another sense, I agree excepting, I wouldn’t classify such who say so in that sense as “scary” so much as “under appreciative” of their own nature as pain and pleasure experiencing “flesh”. (a kind of creepy word ‘flesh’ is but it had a ring to it…ah well).

  46. (and you did mention AIDS so I’ve more or less just soundboarded what you said albeit that example, of course, has become a very cultural thing as unique as that pathogen is…still, I agree with you on that overall as well…just wanting to point out things out of a clarification for myself.)

  47. Regarding whole pro-choice issue. I think in a sense, if one is against both, they have to water down their pro-choice stance a bit. That is, the argument I’ve seen before has been “Well, if you limit eugenics then you are limiting choice and I think it should be for any reason the pregnant so chooses.” I myself am only prochoice regarding sex education and using things like implantation prevention pills and other similiar whatnot as well as generally regarding sex private while I regard eugenics or any other abuse as not so much a privacy issue. It’s fairly “relativistic” for me in terms of what stage and how much “harm” and in terms of “how much choice” is feasible or tolerable. There are some out there who slide down the slope of infanticide or quote “until one develops a ‘personality’, they aren’t a person”. I can’t even begin to fathom the logic of that argument.

  48. Yeah, and then you have to end up defining personality or something.

    As I said before, according to professionals at one point I was too disabled to have a personality. Then we get into Singerian definitions of what “personhood” entails, which is supposedly “understanding of the self as existing through time,” which is not something I’ve always had and/or always have either. What I have trouble understanding, is why so many other people have trouble understanding that they’re defining “person” as “person who thinks like themselves and experiences the world the way they do in certain respects”, and that this is a bias, not a thing to emulate. It’s sort of like defining personhood by walking just because a definition of personhood might be made up by walking people.

    It’s sort of like “thought” has been defined as “a certain kind of thinking” (I don’t mean like word-thinking and picture-thinking, but more like symbolic-abstract thinking in general and “thinking about thinking” is what a lot of people call “thinking”).  So then what I do a lot of the time, and what a lot of autistic people do a lot of the time, and what a lot of non-standard people in other ways do a lot of the time, isn’t considered “thought”.  And it’s at the point where even some autistic people buy into the idea that if you’re not abstract-thinking/contemplating/etc you’re not thinking, and that “not thinking” means being a “non-person”.

  49. “But if you want a child until you find out the amnio was weird or there are suspicious features on ultrasound or whatever, uh-uh.” Well said, Kassiane. The way you framed this (from the mother’s mind/rationale–>decision to abort; inside-out argument), it makes sense.

    “Once we start winning these battles then the rationale behind abortion of disabled fetuses en masse starts to crumble.”–Well said, Rocobley.

    I was talking about an outside-in argument, meaning group approval/disapproval of another woman’s abortion depending on why she didn’t want it:

    Mary Jane says she wants an abortion because she doesn’t want this baby [Reaction: “That’s her right”]

    Peggy Sue says she wants an abortion because she found out the baby is autistic and she doesn’t want to bring another “retard” into the world. She wanted this baby, but now she *doesn’t* want this baby [just like the Mary Jane] [Reaction: “She is a bigot,” etc., etc.]

    Here we have two women who don’t want their babies, regardless of when they decided that they didn’t want them. The pro-choice camp says that *no matter what*, a woman’s want always overrides the baby’s right to exist, regardless of why she doesn’t want it. This flies in the face of the movement against eugenics (which seeks to protect the right of a certain group of people to exist now and in the future), because the woman’s want always wins. There is no room for the right of that disabled baby to exist.

  50. Man, Amanda, get on that “personhood” project! (Not sure if there’s anything I can do to help, but I feel like since I’m giving you an imperative I ought to offer . . .)

  51. Different elements here: “pro-choice” means that you think there should be room in the law for abortions, and that you think that the women having them should be the ones deciding whether they have them or not.

    Practically speaking, it’s very hard to have anything other than this all-or-nothing approach under the law. You can’t make a law allowing abortions to everyone except for women who want them for bad reasons: it’s simply not possible to enforce.

    So let’s assume that given the whole complicated range of reasons that women have abortions, the horrible consequences of restricting access to safe and legal abortion, the right of a woman to control her own body and not be used as somebody else’s baby-making machine… let’s assume that whether we think God approves or whether we think abortion would be something we choose, that we think the law should let it happen. Just to take it out of the discussion.

    So. We have all (theoretically) agreed that it’s possible to obtain a legal abortion, that the law is going to stay that way and that we aren’t going to make a fuss about that.

    So what are we talking about exactly when we say we’re anti-eugenics? That because of the potential for abuse, we want a law against pre-natal testing? That we wish to educate doctors about a wider perspective? That we think people who only choose abortion when the fetus doesn’t meet their criteria are bad/ selfish/ irresponsible/ immature people?

    Or are we simply exploring the consequences of the practice and finding them problematic? I absolutely find the practice problematic. Disabled people go from being a normal part of human society to being a medical error. Not good.

    Personally I wouldn’t go for pre-natal testing: I wouldn’t have a child in the first place if I weren’t prepared to care for a disabled child. (As I’m not prepared, I’ve never had children.) That is the choice that makes intellectual and moral sense to me and that I am at peace with. Other people, however, have different perspectives. Of course I think I’m a better person than they are. So now what? Do I campaign to make pre-natal testing illegal? Or do I just state my views?

    (A disabled friend who is a disablity rights advocate had pre-natal testing when she had her child. She would physically have had difficulty parenting (for instance) a heavy toddler unable to climb on to her chair. She’s well informed about all the issues and this is not a decision I would want to make for her.)

  52. What is the Personhood Project?

    “As I said before, according to professionals at one point I was too disabled to have a personality.”

    My college roommate was of the opinion that perhaps I didn’t have all that much of a personality, when I asked her input, in fear that I didn’t have one. Also a colleague once told me that he thought I was borderline personality disorder (some of those NTs with the superior social skills, they say stuff like that), and I was under the impression at the time that he meant I was in between having a personality and not having one. (I know realize this is not what it means, but can never remember what it DOES mean – In between one disorder and another, is it?)…

    I wish sometime you Amanda or actually anyone here or anyone at Autistics.org would do an article explaining the whole concrete vs. abstract thought thing. I still can’t figure that out, i mean I can’t tell when I’m doing it or not. Sometimes everything there is seems abstract; sometimes everything there is seems concrete. Maybe I just don’t understand the words although I thought I did.

  53. I think Alison has a good point; it’s not just a matter of your stance on abortion, it’s also your stance on eugenics. Both pro-choice and anti-eugenics are lables that can be interpreted broadly. For instance, my view is not so much opposing women choosing abortions of fetuses that have genetic anomalies, as opposing have the choice pushed on women as ‘the right’ or ‘the best’. I’m opposed to any medical or social coercion pressuing women to get pre-natal testing, or having abortion treated as the ‘right thing to do’ for women who discover certain results. I can, and do support women’s legal right to choose an abortion under these circumstance, while personally thinking that it’s generally a bad decision. As far as I can tell, there is no major inconsitency in this.

    It’s entirely possible to consider yourself anti-eugenics, and hold a range of positions, for instance; thinking eugenic abortion should be legal but isn’t moral, being morally opposed and wanting it legally prohibited, considering ‘health of the mother’ a valid reason for abortion but not ‘health of the fetus’, supporting the right to first trimester abortions as the women’s choice but not considering potential disability of the fetus as a valid reason for later abortions, considering abortions a woman’s choice and opposing social coercion to abort for genetic reasons, being firmly pro-life for all fetuses including the disabled, and probably any number of views I haven’t covered. There’s not necessarily a glaring inconsistency in any of these views, and you don’t have to be in full agreement to find areas where you can work together.

  54. Again, agree with the comment above, by Alison Cummings.

    Autiemom: “Here we have two women who don’t want their babies, regardless of when they decided that they didn’t want them. The pro-choice camp says that *no matter what*, a woman’s want always overrides the baby’s right to exist, regardless of why she doesn’t want it. This flies in the face of the movement against eugenics (which seeks to protect the right of a certain group of people to exist now and in the future), because the woman’s want always wins. There is no room for the right of that disabled baby to exist.”

    Well since I don’t believe that an unborn fetus has any ‘right’ to exist (as I don’t believe it’s a person) then yes the right of the woman to control her own body trumps all. As Alison argues, the practicalities of the thing mean that either you let abortion be safe and legal, or you try to ban it. And once you start doing that then the inevitable consequences will be women on low incomes trying to perform dangerous home abortions, or dying in back-street abortion clinics.

    And it’s practicalities that count. We can argue forever about whether fetuses have rights or whether women who abort fetuses with disabilities are all evil eugenicist bigots (a view I think is total rubbish btw). I think we should be discussing these subjects in the context of what we think we should do about these things. I have blogged and posted elsewhere my view that just discussing things on blogs and other website is totally insufficient, and that we autism rights activists should start actually *being* activists and engage in some systematic on-the-ground campaigning.

    Thinking along those lines, I am actually sceptical of the possibilities of any practical durable alliance between pro-choicers and pro-lifers in any autism rights campaign that included eugenics as an issue to campaign on. Very soon the pro-lifers would be arguing that we should stand around abortion clinics with pictures of fetuses trying to persuade women with disabled fetuses not to abort. The pro-choicers would object to this, and the whole thing would fall apart.

  55. I am near meltdown right now about things concerning my kids, not anything about this discussion. I don’t know if I’ll be able to be very coherent at the moment and when I can get myself together I want to go back and read beginning from about comment #56.

    I just wanted to jot down some random thoughts before I forget them.

    1) I think it’s easy and common to fall into a trap of mistaking/confounding/making interchangeable “mother aborts fetus because it is genetically ‘defective'” with “government- and medicine-sponsored eugenics for the purposes of bringing down the ‘devastating/crushing cost of having to care for all these genetic defects.'” I and others have been guilty of balling those things together when they are not the same, even if it could be argued to be a part-to-whole kind of thing (or conversely, that the whole does not consist of the sum of the parts).

    2) Government- and medicine-sponsored eugenics programs are still not the same thing as government- and medicine-mandated programs, so even if these things (God-forbid) became standard practice, so long as the woman could waive screening and waive abortion, she still would have a choice.

    3) Assuming that even in the face of government- and medicine-sponsored programs, millions of individual women still would have the right to choose to abort, this could be a reason for #1 (balling together all these separate choices into the word “eugenics,” because it takes all these separate decisions to combine into a eugenics phenomenon, even though the two things are not exactly the same, the net result would be the same).

    4) Motivation for eugenics: If one were to pose the eugenics question in different ways, the “random person on the street” answer would probably be very different:

    a) Would you support the idea of eugenics in order to create a master race? — No, that sounds like what Hitler tried to do.

    b) Would you support the idea of eugenics in order to create a perfect society? (people with no physical/emotional/mental/cognitive defects)? Um….well, that sounds like it wouldn’t be so bad, would it?

    c) Would you support the idea of eugenics in order to end pain and human suffering? Sure! Yes, that sounds wonderful. We could create a better world for all mankind. Yes, I would support that.

    It would be easy to get vast numbers of people (majority, majority rule) to accept eugenics depending on how it is presented to them. If eugenics became law, millions of people would be doing Hitler’s bidding while feeling like saints.

  56. What I was trying to say is this (coming down from almost a major meltdown and starting to be able to think a little again):

    Up until the point where eugenics is signed into law, we are engaged in a battle to win over the hearts and minds of women present and future who may be faced with the decision to abort on the basis of disability.

    If we are successful in creating a positive view of disability by successfully countering the mass hysteria that we are seeing in the media, and if disability rights becomes incorporated so strongly into society that our culture actually *changes*, then individual decisions to abort on the basis of disability will be far, far less than they would be otherwise, and any remaining acts of abortion solely to have a perfect child would be wrong and bigoted, but not part of an overall cultural eugenics movement.

    If we are not successful, and images such as those put out by Autism Speaks and articles such as that one with Mary Grace in it become louder and bigger and more and more forceful and convincing, then individual decisions to abort on the basis of disability will rise, and continue rising the more and more science and medicine becomes successful at identifying genes and other indicators of disability.

    If the second happens, so long as a woman’s right to choose an abortion *for any reason* remains on the law books, there will be a de facto eugenics movement, and those who are both pro-choice and anti-eugenics will find that the one stance is canceling out the other.

    I’m not talking about individual women making individual choices based on individual reasons. I’m talking about decisions based on ideas and actions backed by laws, and what can happen on a large scale, and whether what is right for the individual can still be right on a large scale. I think it was Kant who talked about ways to identify the rightness or wrongness of something apart from any mention of God or religion. It had do with extrapolating individual actions on a large scale so that everyone was doing that thing, and how that would look, and do we really want that.

    So this brings me back to winning hearts and minds. Since abortion is legal and since the technology paving the way for eugenics is on the rise, the only way in my mind to stop de facto eugenics is to change the culture. We are still so grass roots that it kills me.

    Most autistics and autistic families do not have the money or the backing to do this. Does it really all boil down to money? Sometimes it makes me wonder.

  57. Berke^Amorpha – I’m one of those people. I love kids. I want kids. But genetics (and learned behaviours – my coping strategies are crap) mean that I have a good inkling that my child will have the same difficulties as I’ve had, and as far as I’m concerned that’s suffering. When I’ve spent a good portion of my life wanting to die, it seems rather hypocritical to bring a new life into the world. Am I wrong? Possibly. But that’s my view at the moment.

    I think, for me, it depends whether you see the genetic component as factoring into the picture because you see your own problems as being the result of verifiable, medical genetic conditions, or because of things labeled as psychiatric disorders that have been theorized by some to have a genetic component.

    Going solely by my psychiatric record, the diagnoses I’ve received, and the “symptoms” and “behaviors” I’ve exhibited at various times, most people who believe that such behaviors have a genetic component would be vehemently against my ever trying to create a child using this body’s own genetic material.

    The thing is, I don’t dispute that I’ve exhibited those “symptoms” and “behaviors” in the past. I have. At various times, I’ve fit various people’s ideas about “people who absolutely must have treatment, and should have it forced on them if they don’t want to receive it,” and ideas about “people who will never be able to live a normal life without psychiatric medication.” I know the feeling of depression, and various other things that were labeled symptoms of incurable, biochemical or genetic mental illnesses. I have also had the experience of believing that I, myself, would never be able to live a normal life without somebody to supervise me or prescribe drugs for me.

    In fact, my experiences share many similarities with the ones Amanda described in Assorted psychiatric distortions. (The quoted passage about “How could they diagnose you with a mental illness? That was a terrible mistake, it should never have happened to YOU” while ignoring explanations of how at the time you *were* behaving in a way that fit others’ criteria for a mental disorder, has eerie similarities with some things I’ve been told also.) In that, when mentioning that I have experienced things in the past that I don’t experience so much any more (or have better ways of controlling now than I used to), I got told “Oh well, that means you didn’t have the *real* version of that, or your symptoms must not have been very severe.” I don’t really like to get into the “how severe were your ‘symptoms'” game, because “severity” is such a relative measure, for one, but also because that involves going into private details of my life. But basically I *am* sitting here now either managing a lot of things without medication, or not experiencing things that I used to take medication trying to control, despite having had some very bad times in the past, and according to the idea that those things are genetically inevitable for those who experience them, I shouldn’t have been able to do that.

    So, basically, if someone were to tell me not to have children because my children were going to inherit depressive/anxiety/psychotic/etc genes from me, that wouldn’t really wash with me. I have no basis for assuming any of those things are genetic. I can better understand the idea that it’s not such a good idea to have kids if you don’t have a good way of coping with the problems you have now, because that so often ends up with things being taken out on the children, or, like you said, children copying self-destructive or abusive behavior from parents. However, that falls under a more general principle, for me, of “if you don’t trust yourself to be able to care for a child or provide a role model for a child, don’t have or adopt children.” (Not that this prevents all problems, because there are still the people who convince themselves they’re wonderful parents when they are not, but it prevents at least some bad potential situations.)

    If someone has decided it’s not a good idea for them to raise children at this particular time in their life, that’s something I understand and support, but I do worry about people making decisions based on things that have only been theorized to have genetic components.

  58. Berke^Amorpha,

    Everything has a genetic component. I mean, being human has a genetic component. Suck all the DNA out of an egg and sperm, and… no baby! Of any kind! So any human behaviour or characteristic has a genetic component because it is dependent on the DNA-built human who is exhibiting it. If a human behaviour exists, it’s because human DNA allows it to exist. (For instance, we don’t see a lot of preening – spreading oil over our feathers – among humans. People who work with lab animals recognise this: they teach rats to press levers, pigeons to peck buttons and guinea pigs to put their noses in things to interrupt a light beam. Button-pecking and lever-pressing are just not part of the guinea pig repertoire.)

    Saying that something has a genetic component doesn’t mean it isn’t modifiable. Some people are built to be better runners than others, for instance. They have longer legs, a certain proportion of slow- and fast-twitch muscle and so on. But if they never train, just sit around the house and watch television and eat chips, then they will be slow runners. And their stubby-legged, slow-twitch neighbour who goes out and trains with the track team will run faster than they do.

    Conversely, that doesn’t mean the genetic component is meaningless: if they both train, or if they both are couch potatoes, then the one better built for running will be able to run faster.

    It’s not either-or: something can have a genetic component *and* be modifiable. In fact, that’s much more the rule than the exception.

  59. It was upsetting me to read through most of it so I had to skim and kind of squint my eyes…but then again, I’m still so overloaded and don’t know when I will ever get down from this.

    I did read your comment. You showed a great deal of composure, more than I or probably almost anyone would have had, considering how nasty the whole page was.

  60. I have had a look at the blog in question, and the author seems to be pretty unpleasant in his politics generally. One of his posts suggests that the high prevalence of AIDS among gay men is their own fault, as they’re all promiscious! Personally I wouldn’t be too bothered by the views about disability of people of like that.

    Oh yes he also has a post attacking socialism – so that’s a good reason for *me* to ignore him too!

    :-)

  61. While I think the restraint in your response is admirable, by their own words they seem to already be quite in favor of eugenics because they can not see the “worth” of a person with a “disability”. Until they can understand that they have no right to determine another person’s value the point of the discussion will most likely not be comprehended.

  62. “Just so everyone’s aware, this entry and the responses to it are being responded to (and at times openly mocked) here:” (hey, do italic tags work here (in angly brackets vs bbcode?)? I assume so).

    I can scan text without seeing the author and recognize your writing. I found that wonderful. It is scary too because I can almost see the other jerks writing just by a quick scan but no “face” just attitude profile.

    I recognize some of myself even in other autistic writing and either I copied others or others copied me….but either way, I notice “autistic” writing style now almost it seems as good as people. I didn’t even know you commented but before seeing the author, I said to myself “oh, ballastexistenz commented”. Then I realized what I did and awed at myself a bit. I sometimes am just as shocked as others as whatever little things I might do too hehe.

  63. “Zilari: Something I’ve noticed, is that people don’t seem to understand the difference between:
    “1. Choosing one PERSON over another PERSON.
    “2. Choosing to alter one person for what they see as “the better”.
    “Now, I don’t agree that these alterations would be for “the better”. But I’ve seen a whole lot of people, in a whole lot of places, equate things like eugenic abortion with “giving a child a better chance in life”.
    “This is not “giving a child a better chance in life” (even if you thought the previous child had a crummy chance) — it is giving one child no chance in life and giving a difference child a chance instead. People talk about it like it’s the same child. That’s eerie and bizarre.”

    That’s pretty much what I said in my blog entry “Preventing Disabilities or Preventing Disabled People” which is at http://abnormaldiversity.blogspot.com/2006/06/preventing-disabilities-or-preventing.html
    By the way, I’m a pro-life feminist socialist. All those logically follow from each other for me, and it always kind of surprises me that other people hold what seem to me like contradictory viewpoints, such as being pro-life conservatives. Granted, it’s not contradictory if you understand their reasoning, but my habitual way of viewing the world means those are contradictory.
    How is the abortion issue separate from anti-eugenics? Plenty of ways. I’m pro-choice about dietary treatment for PKU, rather than considering it mandatory. I oppose preimplantation genetic diagnosis even though I don’t consider zygotes alive (in the sense that I’m alive. They are alive the way e-coli or the islets in my pancreas are alive). I oppose sterilizing people because you don’t want more of their kind. I oppose “mercy killings” (which aren’t merciful from my perspective) and saying suicide is OK if you’re disabled but not if you’re just depressed (I don’t think anyone should kill themselves).
    And some pro-choice anti-eugenecists might be saying they don’t want people to be viewed as irresponsible for choosing not to abort a disabled child, the same way I don’t want people viewed as irresponsible if they decide to feed a phenylalanine-rich diet to their PKU child.
    Ettina

  64. I’ve only just caught up with this extremely interesting discussion. As someone said, the key think is to work out effective actions we can take. Turning around current perceptions of autism seems a more feasible goal than preventing women from receiving “genetic counselling”. Trying to turn round that perception is exactly why so many of us are doing what we are doing, including in my case recently setting up http://www.youtube.com/group/posautive because as GTTO reminds us, images are highly effective (there is a flickr group too, for stills). Anyone here with some upbeat video material about autism is urged to add it to the 40 short videos there so far. We need this to grow, and we need people to know about it. It is sort of an extension from the TAAP idea, and includes their new video – brilliant!

    Making sure that it is legal obligation for any genetic counselling to include positive autism views seems to me the most feasible way to go (politics the art of the possible…) eg having Don’t Mourn for Me read out, and being given links to things like the autism hub and the Posautive Youtube group as well as to national/local autistic societies and their usually less autism friendly positions. This may be achievable through disability rights channels. There is an extremely interesting and penetrating discussion about all these issues including the economic and administrative ones at

  65. ballastexistenz Says:
    August 23rd, 2006 at 17:44
    Yeah, the “preparation” that a few parents engage in (that I have no problem with) is tiny compared to the enormous amounts of parents who are going to abort because they’re told it’s for the best or bullied/pressured/etc.

    I am easy to pressure. I was easy to pressure when I was 18 and got pregnant. I did not understand myself nor know I was autistic (HFA/Asperger’s). I was pressured by everyone around me into having an abortion, which I still regret 30 years later. At the time I even did not want a child “like me” as I was miserable, suffering from PTSD and depression at the time. I figured the kid would be like me, “all screwed up”. That was the only thing I “knew” about myself at 18. Even the doctor asked me what I wanted to do and I didn’t know… and he gave me the phone number of an abortion clinic. The year was 1977. 30th anniversary this year. I thought of that first thing this morning, even before I went online and somehow got into looking at “genetic outlaws.” I accept full responsibility for my decision.

    I also somehow feel like “a hypocrite” for being against genetic testing and selective abortion since that’s what I did, in a way. I used to be pro-choice but I have serious reservations about it now. I am not adamantly opposed to all abortions, but check with me in a year and I probably will be.

    How much harder it will be for people to NOT make the abortion choice, when they are purposely being tested and pressured for “medical” reasons to not have the child? I don’t know. Although I was easy to pressure I also was not “one of the crowd” when it came to being told what to do by society in general, and I wonder if many prospective parents, having been raised to think that this sort of thing is “natural and good,” will just go along with it. Even those who are not desperate and without resources.

    Having just been diagnosed this year with Asperger’s, I regret even more not having the baby. Maybe he or she was autistic. That was one of the first things I thought of after my diagnosis. It’s not like I fixate on this all the time but it is always with me.

  66. Pingback: Behavior and genetics, Part 2: Eugenics « Urocyon's Meanderings

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