Post 1: Trite criticisms of a Washington Post essay.
Whenever I am out with Margaret, I’m conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don’t know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent.
Imagine. As Margaret bounces through life, especially out here in the land of the perfect body, I see the way people look at her: curious, surprised, sometimes wary, occasionally disapproving or alarmed. I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living. […]
What I don’t understand is how we as a society can tacitly write off a whole group of people as having no value. I’d like to think that it’s time to put that particular piece of baggage on the table and talk about it, but I’m not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.
And here’s one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what’s driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families. The abortion debate is not just about a woman’s right to choose whether to have a baby; it’s also about a woman’s right to choose which baby she wants to have.
There’s a lot to unpack in this article:
1) Bauer is, I think, correct to believe the lives of people with Down Syndrome are worth as much as other lives. Objectively, having Down doesn’t make life less rich or worthwhile, nor does it make loving and being loved less rewarding.
2) Bauer’s essay is marred by her habit of attributing unflattering beliefs to large groups of people, based on dubious reasoning. For example, she writes “I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living.” Huh? Even among the tiny minority of women of childbearing age who aborted a fetus with Down Syndrome, it’s unfair to assume that they consider people with Down Syndrome to be leading lives not worth living; there are obvious other reasons they might have chosen an abortion (for instance, not believing that they personally had the ability or the resources to care for a child with Down Syndrome).
(Baggage Carousel 4 has further discussion of this point – including dubious speculation about Bauer’s motives. Holy Irony, Batman!)
3) Whatever Washington Post editor edited this sentence:
I don’t know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent.
should be sentenced to several months of editing Judith Butler’s essays for readability. It’s impossible that 80 to 90 percent of pregnancies are aborted because of Down syndrome, which only occurs in 1 in every 800-1000 pregnancies. Presumably, the author means that 80 to 90 percent of fetuses with Down Syndrome are aborted.
Post 2: Responses to Pro-Life Responses to Bauer
1) Predictably, many pro-life bloggers have been linking to this piece, some comparing the abortion of disabled fetuses to the Holocaust or genocide. It seems to me that this argument begs the question, when applied to the abortion debate. Deliberately killing thousands of people with Down Syndrome would be genocide, beyond any doubt. But calling the abortion of Down Syndrome fetuses “genocide” assumes that fetuses are people. Whether or not fetuses are people is one of the primary questions pro-choicers and pro-lifers disagree on; you can’t just assume it’s true and then accuse pro-choicers of genocide.
Even pro-life responses that aren’t extreme enough to compare pro-choicers to Nazis tend to make this same basic logical error of assuming what’s at issue.
2) Also on the abortion question, even if we agree that abortion in order to prevent Down syndrome is wrong, and even if we agree that government intervention is called for (two very big ifs), that still doesn’t lead to banning abortion. It would be less extreme to simply ban testing for Down syndrome.
3) If there were a prenatal test for potential obesity, I have no doubt – none whatsoever – that the large majority of expectant mothers in the U.S. would take the test, and would abort any fetus which was likely to become obese. People like me would virtually cease to exist. I’ve been thinking about this hypothetical all day, and although I believe it’s true – given the choice, most mothers would abort a fetus if they knew it would someday look like me – that doesn’t alter my views on whether abortion or prenatal testing should be legal. If the options are limiting women’s reproductive rights or limiting the births of people like me, the latter is the lesser evil.
4) Speaking only for myself, if I were a pregnant woman, told that my fetus had Down syndrome, I believe I’d choose to abort. People with Down syndrome are significantly more likely to die young (Down syndrome is associated with severe heart conditions). My cousin died at age sixteen, in a car accident. My cousin was wonderful and her life well-worth living and all her family and friends are blessed because we were lucky enough to know her; but it would have been better still, immeasurably, had she lived decades longer.
Worldview Warrior disagrees with my approach.
That is reality… you want a perfect baby? Sorry to break it to you, it won’t happen. This desire for perfection is a fundamental longer for the way things ought to be but the means by which we try to obtain perfection in our fallenness is flawed.
I agree that life comes sans guarantee. Some born with terrible heart conditions defy doctor’s expectations by living to 90; some in perfect health die young in stupid car accidents. But even though I can’t control what happens, what’s wrong with trying to improve the odds?
Post 3: Separating the Issues of Down Syndrome and Abortion
Imagine it is discovered that dumping folic acid into the water supply cuts Down syndrome births by 80%. Some areas begin putting folic acid into the water (similar to the way some areas have reduced cavities by putting fluoride in drinking water). Hypothetically, let’s assume that this has no side effects.
How many people would object to an 80% reduction in Down syndrome births, if it didn’t involve abortion? From this pro-choicers perspective, there’s no logical distinction between a reduction in Down syndrome births due to a “cure” and a reduction due to voluntary selective abortion. So if someone is appalled by the latter, but okay with the former, that suggests that they’re not really against Down syndrome being wiped out; they’re just anti-abortion.
Post 4: Is Preventing Down Syndrome Ethical?
Suppose that in the future, scientists discover that trisomy 21 – the condition that leads to Down syndrome – is indirectly caused by a virus which effects one in every 1000 or so births. A program of inoculation wipes out the virus, and Down syndrome in the following generations no one is born with Down syndrome, ever.
Is this genocide? Or a boon to humanity?
I don’t know.
The argument that attempting to prevent disability, is the same as saying disabled people are worthless and should be wiped out, compels but does not persuade me. When I say I’d like to wipe out poverty in my lifetime, that’s not saying that I’ve judged poor people’s lives and found them “not worth living.” If I invent a car seat which better protects spines, so fewer are crippled in accidents, that doesn’t mean I’ve judged the lives of people in wheelchairs not worth living.
Everyone faces limits – but a person with Down syndrome, or a person in a wheelchair, faces limits most of us never experience. If fewer people face those limits, how is that terrible?
On the other hand, that argument ignores the very real prejudice against the disabled. What if the energy put into “curing” disability was instead put into fighting against anti-disabled bigotry? The Useless Tree argues that instead of seeking to ban abortion, we should instead solve the problem of selective abortion of disabled fetuses by increasing understanding (hat tip: 11D):
…We should think of ways to allow people, and especially prospective parents, to see the beauty of children with disabilities. And the first way to do that is to put more resources and attention into supporting families with disabled children.
If securing needed therapies and programs for disabled children in schools was less of a struggle and more of a welcoming and constructive process, then some of the stigma of disability might disappear. If there were more healthy and happy group-living accommodations for adults with disabilities, adults whose parents have passed away, then new parents with disable children would worry less about what the future might hold. If there were as much emphasis in our culture on common humanity as there was on individual productivity (I am, you will remember, against productivity), then there would be less questioning the value or worth of disabled people.
I agree with all that. It is impossible that disability will ever be completely eliminated; even if Down syndrome is wiped out, people will still be born with other disabilities, or become disabled after birth. Since disability can never be “cured,” it logically follows that a genuinely accessible, non-bigoted society is a better and more comprehensive solution to the “problem” of disability.
But doesn’t putting it that way assume that we face an either-or question? The truth is, “both/and” is the most realistic path. We can assume that efforts to reduce disability are good, and still believe that disabled lives are as rich, fulfilling, and worthwhile as the lives of (temporarily) ablebodied people.
But wait a moment – that makes no sense. If “disabled lives are just as rich, fulfilling, and worthwhile,” then isn’t it an enormous waste of money and effort to attempt to prevent or cure disability?
And round and round I go.
Post 5: Is It a Disability to Have a Disability?
Some people find that painting, comics, and beautiful sights immeasurably enrich their lives; some people aren’t all that touched by that stuff. But no blind person gets the chance to find out if they feel rapture when reading a great comic book.
I realize that many blind people lead full lives, and that there’s as much pleasure to be found in the other four senses as there is in sight. I certainly don’t think a blind person’s life is not worth living. But the world is better when everyone has as many options as possible, and blind people are cut off from many options that they might (or might not) have enjoyed. Nonblind, their choices are broadened.
But then again… everyone faces constraints on their options – it’s part of the human condition. And everyone (well, everyone who doesn’t face direly constraining injustice) faces more options than they’ll ever pursue. If I had been born blind, I wouldn’t love comics; but I would have pursued other interests. Life is short, and possibilities are infinite.
Post 6: Diversity vs. Medicine
Meanwhile, our futurists sigh in ecstasy at the thought “seizing control of human evolution” and making “better” babies enhanced for increased intelligence, beauty, or longevity. Yet, developmentally disabled people are some of the most “human” people I have ever met, most merely wanting to belong, contribute, love, and be loved. Somehow that point is lost on the Brave New Worlders, as is the very concept of unconditional love for children regardless of “characteristics.”
We are told by “transhumanists” and others that the future will be an individualist’s paradise, with all of us able to remake ourselves and our children into whatever form of life we choose. But the reverse seems true. As we claim to believe in diversity, in many ways we are actually well down the path to destroying it.
Isn’t a more diverse society richer? In this sense, isn’t a society with less blind people, less Down syndrome people, less fat people, etc., simply less interesting and worthwhile?
I’ve always admired Deaf culture – its beautiful and efficient language, its arts, its ability to survive in a larger and too-often hostile culture. But Deaf culture is shrinking as medical science advances, both because fewer and fewer deaf children are born and because incurable deafness is becoming rarer. I can’t say that I think medical advances are bad; nonetheless, I think the utter loss of Deaf culture would be tragic.
If fatness were safely, easily curable, how many fat people – even fat activists – would take the cure? I suspect nearly all of us would. Would a society in which no one was fat be worse?
Post 7: Sort of a Conclusion
But logically, I realize that human happiness isn’t based on being able to walk, or see, or learn quickly.
* It is an empirical fact that some disabled people, including many with Down syndrome, lead happy lives; it is also true that some nondisabled people are miserable all their lives.
* Multiple studies have shown that ablebodied people who are basically happy before becoming disabled in an accident, remain basically happy people after the shock of being disabled passes.
So perhaps my heart is wrong.
I don’t think efforts to cure or prevent disability should be stopped, because some disabled people would prefer to be non-disabled. But at the same time, I think it’s more important to reform society, and the way we view disability, ability and the pursuit of happiness. That, in the end, has more potential to improve human lives and bring happiness than medicine does.
Maybe.
My point was that if she”“or anyone else”“knew their fetus was going to develop a disability that would be as severe as she described, I wouldn’t waste my breath condemning her for choosing abortion.
I’m not condemning anyone. I’m saying that their choices have consequences for real, born disabled people. I’m not sure why you don’t think you’re wasting your breath telling me to shut up about that.
Wealthy people who live in wealthy towns and have the power to advocate for and organize funding for the resources in their towns and schools for their kids will not have much of an effect on the lives of poor people.
Actually, a lot of important policy decisions about disability are made at the state and federal level. Have you been following the Florida medicaid story? And before you say that only poor people are affected, I’d point out that a lot of disabled adults from middle-class families receive Medicaid.
My grandparents, a T.V. repairman and a receptionist, were centrally involved in the fight to get better services for profoundly cognitively disabled people in their state, because my uncle was severely brain damaged at birth. They kept hitting brick walls until a powerful politician had a child with a cognitive disability. Then, magically, doors began to open. He knew how to work the system, and people with power were more likely to empathize with one of their own.
My uncle, who is 53, now lives in a pretty fabulous group home, which is funded by a variety of state and federal programs. My grandmother lives off of her social security check and could neither afford to pay for a decent placement nor take care of him herself, because of her own disabilities. The state is constantly talking about cutting its very expensive services for the disabled, and I honestly don’t know what my family would do if that happened. And you’d better believe that my grandmother doesn’t rate very high on her state’s political radar. (The rest of my family lives out of state and doesn’t rate at all.) So I’m actually glad that there are some people with money and power who think they have a stake in this, too.
Maybe that’s selfish. But that’s where I’m coming from.
While I realize that you aren’t anti-choice, I’ve run into a lot of judgements for my choices
Yeah, well, I’ve run into judgements for my existence. During all the discussions about Hurricane Katrina, I pointed out that my disability would prevent me from following the escape plans that right-wingers advocated, and at least one person basically said that was survival of the fittest. And some of the utilitarian arguments about Terri Schiavo came off the same way. So you’re not the only person who’s emotionally invested here. But I should apologize, too, because I really am aware how tough it is to raise seriously disabled kids, and I don’t mean to imply that there’s anything evil about people who don’t think they can handle it.
I’m saying that their choices have consequences for real, born disabled people.
But isn’t this true of Amp’s plan to put folic acid in the water supply? It’s not abortion, but it suggests that disabled people shouldn’t even be born.
So if you really think you couldn’t handle being in her situation, you shouldn’t have children
Wanting to reduce the odds of being in that situation is not the same as coping with the situation once it’s thrust on you. I don’t think anybody would tell a single person, wishing to marry, “You should go marry somebody in a persistent vegetative state, because if you couldn’t handle that, you shouldn’t marry–what if your spouse had an accident?”
The real, pernicious problem is the attitude that disabilities make life not worth living, and that there is something dumb, or even morally wrong, about choosing to have a child who will be disabled.
La Lubu is spot-on about the price tag we attach to lives. I’d go farther and say that the disdain for parents of disabled children is partly because those children are not expected to succeed; your Down’s Syndrome child will not grow up to go to Harvard or run a Fortune 500 company, so what’s the point?
Monkey Wrench
This analysis flies in the face of both the history of India, and the present. Misogynist societies around the world have existed quite well knowing that roughly ever other pregnancy is going to be a girl. The ability to sex select pregnancies is relatively recent, and does very
Secondly it’s not like no girls are being born in India and China, and having a girl does not mean that people have to deal with any implications at all about the value, it just means people are having a girl.
Sex selective abortions are a symptom, not a cause of a misogynist society. The only way we can change any misogynist society is by organising together.
All these arguments apply to any effort to cure, or lessen an impairment, or to prevent them happening in the first place.
People who have kids with Down’s do often make a choice now, that’s a fact of the ability to do pre-natal testing. The rest doesn’t necessarily follow. And more individuals choosing to bring the pregnancy doesn’t change the fact they made a choice.
I agree and disagree with this. I that disabled people are not valued by society, and this must change. But an equal large problem is that capitalism does thrive on us all being as similar as possible, and therefore the resources we could give to making sure impairment is not a disability are not used in that way. I think it’s important to acknowledge that you can value someone in a wheelchair all you want, but unless every space where they live is accessible then that valuing won’t go very far.
But I don’t think that giving birth to a Down’s Syndrome baby changes any of this in any way. If we are going to change it, it does have to be through collective action.
But that’s your framing of their decision. When someone terminates a pregnancy for reasons other than disability, we don’t assume that those decisions had anything to do with its potential. The decision to terminate a Down’s Syndrome baby could be an honest assessment of a woman’s resources, and have nothing to do with a judgement about potential. There have been other places where people have assumed that they can see inside the head of women terminating pregnancies because of fetal abnormalities, and described the decision in derogatory ways (bean described women aborting abnormal fetuses as doing it because they were not good enough). I find that disturbing, and anti-woman.
I’m not sure why you don’t think you’re wasting your breath telling me to shut up about that.
I never said any such thing. I said I wouldn’t waste my breath condmening someone who knew their pregnancy would result in a child as severely disabled as Lu’s and chose to abort, considering how crappy a system we’ve got. I don’t think it’s effective, but I never told you to shut up about it–I said it was your perogative to do just that.
Yes, it is good that wealthy people have a stake in this. But resources are often distributed unevenly, and even with the best resources, the poor do not have the same options the wealthy or even the middle class have. They cannot take leave from work to care for a severely disabled child, they do not have jobs and positions where they get much understanding if they need a flexible schedule for this. Leave the child alone and work a shift? You could be brought up on charges of neglect. So you get to chose between working and feeding your family, or losing one of your kids. These problems already exist for poor people with able-bodied kids; they increase tenfold once they have a severely disabled child.
I absoloutely agree that with more support more people would be likely to carry pregnancies of severely disabled children to term. But the support isn’t there yet–and that lack of support is the crux of the problem in my opinion. I also agree with La Lubu and Mythago’s point that the philosophy that the disabled don’t lead lives worth living is a big factor. I think that plays a large part of the lack of will behind proving support to families who have severely disabled kids. I see this lack of support and this pseudo-Darwinian idea that ther are “better” things for us to use our resources on as the biggest problem.
But isn’t this true of Amp’s plan to put folic acid in the water supply? It’s not abortion, but it suggests that disabled people shouldn’t even be born.
Ok, see, this really weirds me out, and I’m trying to articulate why. I have a disability. I’d rather not have the disability, and if they could come up with something to fix it, that would be great. But even with the disability, I think I’ve still got things to offer the world. It seems very different to me to say “Sally would have been better off if she didn’t have the disability” than to say “because Sally has the disability, she would have been better off not existing.” The argument to abort disabled fetuses seems to suggest that our disabilities outweigh every other thing about us, that our potential is completely eclipsed by our impairments. I guess I really don’t understand how people could say that fixing our impairments is the same as preventing us from existing. Maybe that’s because I’m applying this to my situation, and I’m not cognitively impaired. Maybe if I were taking as the typical scenario someone like my uncle, it would make more sense to me. Maybe I’d have an easier time seeing why people seem to think that he would basically be a completely different person if he didn’t have impairments, so much that it would be the same as the person he is now never having been born. But I guess that, even when I think about my profoundly brain-damaged uncle, I don’t think that.
Wanting to reduce the odds of being in that situation is not the same as coping with the situation once it’s thrust on you.
That’s true. But a whole lot of people here seem to think that a good argument for aborting disabled fetuses is that they hear about parents of disabled children and think that they literally couldn’t do that. And if they really couldn’t, that’s a big problem if they have or plan to have children. If what they mean is that they really don’t want to, but could if they had to, that’s a different issue. But people don’t say that, because it doesn’t sound as compelling.
The real, pernicious problem is the attitude that disabilities make life not worth living, and that there is something dumb, or even morally wrong, about choosing to have a child who will be disabled.
You don’t think that conversations like this one add to that attitude? I mean, don’t you get a pretty different idea about parenting a kid with Down Syndrome from, say, Sarahlynn’s blog than you do from this discussion?
(I don’t know if Sarahlynn reads this blog. If so, sorry to drag you in if you didn’t want to be dragged. And amp, feel free to delete it if she says she doesn’t want the link.)
I’d go farther and say that the disdain for parents of disabled children is partly because those children are not expected to succeed; your Down’s Syndrome child will not grow up to go to Harvard or run a Fortune 500 company, so what’s the point?
Do you think that’s a common attitude across the board, or just among hyper-achieving upper-middle-class parents? I think a lot of parents worry that:
1. They won’t be able to afford their kids’ medical bills, even if they have insurance, which is a fair concern. 10% of the cost of heart surgery is really fucking expensive. (There’s an article about this in today’s New York Times, which is nice, because the financial burden on *insured* sick people is generally ignored by the media.)
2. They won’t be able to devote enough attention or resources to their other kids.
3. Their child will never be independent, and they’ll be burdened with the kid’s care into old age. After they die, who knows what will happen? Siblings, who will probably have their own families to worry about, might be drafted to care for the disabled child after the parents die. This will be a constant source of anxiety.
Those are all completely legitimate concerns and things that desperately need to be addressed. And while I know that you’ll say they should be addressed, I’ll just point out that there doesn’t seem to be a lot of discussion of them in the feminist or lefty blogosphere. Being allowed to abort disabled fetuses is a real issue, a feminist issue, an issue about people who matter. Disabled people being able to have decent lives is not quite so central. And honestly, I’d be a lot less squicked by this discussion if I thought people were as passionate about fighting the Florida Medicaid thing, to mention just one example, as they are about defending the practice of aborting disabled fetuses.
I find that disturbing, and anti-woman.
Yeah, you know, you’ve figured me out. That’s actually my whole motivation. Deep down, I just really, really hate women.
I’m going to take a breather, because as I have said, I am not emotionally neutral here, and this is starting to feel a little bit like defending my very existence.
Red:
This analysis flies in the face of both the history of India, and the present. Misogynist societies around the world have existed quite well knowing that roughly ever other pregnancy is going to be a girl. The ability to sex select pregnancies is relatively recent, and does very
Before sex selection existed, there was the option of “exposure” – a choice many people made.
Secondly it’s not like no girls are being born in India and China, and having a girl does not mean that people have to deal with any implications at all about the value, it just means people are having a girl.
You don’t think people who have girls in India, and especially in China, deal with the implications all the time?
Here’s a bit of info from the trusty CIA World fact book on India:
Now let’s take a look at China:
Contrast that with the sex ratio in the US:
…Canada…
…and France.
The implications are pretty clear: at birth, there’s roughly 1.05 males to every female regardless of country. It’s as the population ages that you can see the effects of “exposure” and misogyny. Young women and men are about one to one in countries without a tradition of girl-killing, and the former far outnumber men – women naturally live longer – among senior populations. Not so in China or India. The ‘selecting’ must be outrageous to make even a minor statistic difference in countries with over a billion people each – and this is a major difference. Look at the sex ratio for older people.
No, there are social implications attached to having and keeping girls in India or China. And these implications are well enough understood that a lot of people choose not to have or raise girls.
Sally:
I’m going to take a breather, because as I have said, I am not emotionally neutral here, and this is starting to feel a little bit like defending my very existence.
I know the feeling.
I’d go farther and say that the disdain for parents of disabled children is partly because those children are not expected to succeed; your Down’s Syndrome child will not grow up to go to Harvard or run a Fortune 500 company, so what’s the point?
Do you think that’s a common attitude across the board, or just among hyper-achieving upper-middle-class parents?
I’d say that attitude is reflected in the actions of policymakers who are increasingly voting in favor of harsh cutbacks in services to the disabled and their families. It’s not necessarily about having a child go to Harvard or run a Fortune 500 company (I assumed that was a little bit of exaggeration), but it is definitely about whether that child is or is not going to be a taxpaying, self-supporting citizen.
Take as long as you need, Sally. I’m sorry if I was part of the reason why you feel you needed to defend your existence. If you want to keep talking about it more privately, you can email me at pmac430@yahoo.com. Or if you choose to do it publicly here after a breather and answered/rebutted anything I said here, feel free to ping me via email.
It seems very different to me to say “Sally would have been better off if she didn’t have the disability” than to say “because Sally has the disability, she would have been better off not existing.”
Yes, I see your point.
If what they mean is that they really don’t want to, but could if they had to, that’s a different issue. But people don’t say that, because it doesn’t sound as compelling.
I don’t think it’s so much that they’re trying to be ‘compelling,’ as that we live in a world where it is not okay for women to say that they just don’t want to. That’s why you get arguments (having nothing to do with disabililty) where a woman will say “I can’t afford another baby” and anti-choicers will start pointing to support resources or analyzing her financial situation. Perhaps it is true that the woman really, truly wants the child but cannot afford it. It could also be true that the child would be a financial strain, but a bearable one, and it’s a strain the woman doesn’t want. But it’s not okay for her to say “Look, if I have another kid, the children I do have can kiss their college funds goodbye.”
Do you think that’s a common attitude across the board
I doubt it’s much on the minds of people who would never dream of their kids going to Harvard, and I certainly don’t believe it’s the only (or even the primary) reason someone might abort a disabled fetus. I was referring more to societal attitudes towards disabled children in a materialistic society; they’re not “useful”, therefore what’s the point? (Please let me reiterate that I don’t feel this way, at all, about the disabled.)
Sarah, I don’t think that dragging this topic into the open increases ignorant attitudes about the disabled–it gets people to talk, and it means that those who are disabled, or have disabled children, have a chance to speak up where their voices might have been overlooked.
Almost all people want their kids to inhabit a better world, and to influence society, but few are willing to follow that line of thinking to its logical conclusion: childbirth itself is a catalyst for change.
…yeah. And I don’t think there’s anything wrong with people being reluctant to use their reproductive processes as a catalyst for change. Childbirth is intimate and it’s arduous and the idea that it should be done for a Cause of any kind is one that I have deep moral objections to.
It’s one thing to affirm the right to chose, but quite another to value that choice so much you refuse to offer up anything that calls it into question.
I refuse to accept the moral judgments made by outsiders about that choice as having any value or validity, yes.
What Linnet said. Why should a woman be somehow compelled to use her womb to advance some kind of social agenda if she doesn’t want to? Why must women be called upon to sacrifice in the name of some nebulous and vague social gain many years in the future? To use the female-infanticide or sex-selective abortion analogy: If a woman faces ill-treatment for bearing a daughter, why should she martyr herself for the cause? Is her wanting to be treated well and gain status in her society selfish? Should she welcome her beatings in the name of the Holy Cause?
I can’t help but note that it appears to be WOMEN, once again, who are being called upon to be selfless and self-sacrificing. Why not make it mandatory that fathers provide 50% of all care for disabled babies (or any babies) born? Why not demand that fathers also advocate for disabled children? And so forth.
Why must women be called upon to sacrifice in the name of some nebulous and vague social gain many years in the future?
Uh. Because that’s what adult humans do?
Sally I’m sorry you feel your existance is under attack. I agree with your list of the main factors that people consider when it comes to whether or not to continue a pregnancy that has an impairment, or has a risk of impairment. Certainly it’s very accurate for the only person I know who has ever had to make a choice relating to these issues.
What I was trying to say, is that I don’t think that’s what the argument is about, and I don’t think that’s the decision that people are making. Just like I don’t think when someone has an abortion for any other reason it’s a statement about the potential of the fetus, but a decision the woman makes about her life. We trust women to make moral, or the right, decisions when it comes to terminating pregnancy, I believe that they can and do this when the issues involve include the risk of impairment.
Monkey Wrench:
I wasn’t arguing with that at all, I’m well aware of that. What I was disagreeing with was whether this was a symptom or a cause of misogynistic society, and whether not sex selecting would make society any less misogynist. I believe that no individual action by any oppressed people can end that opression, it is only by coming together and organising collectively that we can make a difference. Rather than finger pointing at the individual people who make a decision, we need to change a society so they don’t need to make those decisions.
Autonomy has its costs, it may often or even usually reflect societal attitudes that are painful, but it’s the best of any alternative I can imagine. As ableist as society is now, it has become a lot more accepting of disabled people within the last two generations, and I believe that this acceptance has resulted from an appreciation of the autonomy and rights of all people, whatever inherent limitations we ascribe to their fitness or ability to exercise them. Certainly this is true of the mentally ill. This is why I don’t think it advances argumentation to take the life decisions of third parties personally as a statement about the worth of an entire class. On the other side, I think it’s too much to ask individuals to assume a burden they aren’t equipped for in order to facilitate social change, and I fear that taking their decisions personally can easily slide into support for curtailing their freedom to make those decisions. This is basically what the pro-life movement is about, it was clearly in evidence in the debate over Terri Schiavo’s fate and, literally, it is what society required of women prior to the legalization of abortion. I also think this position is perilous for any group that can be marginalized by society as a whole, “for the good of the majority,” including the disabled. If you can see the logic of saying that couples should not undergo abortion in order to boost the standing of the disabled, is it so far out to imagine someone saying that it’s better not to honor the autonomy of the disabled when it comes to the expenditure of resources, in order to boost the chances of the class of normal people? Don’t many people already say this when it comes to the EHA, that boosting the rights of the disabled takes away from the able bodied in the classroom?
A person making a decision to terminate a pregnancy ex ante rarely has an understanding of what exactly caring for a disabled child will entail — they are given a range of possibilities from mildly to severely alarming. Perhaps some are making a decision out of personal disdain for disabled people generally, but it is more likely they are making a decision based on what they believe are the too high social costs of having and caring for a hypothetical disabled child that has characteristics they can barely imagine, and whose disposition has yet to be proven as sunny and loving or what have you. In short, no one is saying that they plan to abort Ms. Bauer’s daughter or someone with her specific character traits and achievements.
I believe that the caculus of many such potential parents is that they don’t want to be bad parents of any child, disabled or no, and they don’t want to expend or don’t believe they have the resources in either time or money to be good parents to the disabled child or perhaps to their other non-disabled children at the same time. And this assumes that they don’t have justification, as they may indeed sometimes have, to believe that they are alleviating suffering (e.g., where a life will be very short and very painful).
Bean I agree with almost everything you said. There is only one distinction I would make, and it’s a subtle one.
I don’t think that the problem is the choices people make, but the reasons people feel they have to make those choices. The hard work doesn’t just need to be done by those who are pregnant (or making choices about what to do about pressing charges), but by all of us (I also remain unconvinced that aborting a down’s syndrome baby has any wider implications).
I have to admit that here in New Zealand the idea that the pro-choice movement could hold anyone or anything to ransom is rather ridiculous, more’s the pity. So I think a lot of these issues have different resonance here (we also have a much better, but still nowhere near good enough, social welfare system).
“I don’t think that the problem is the choices people make, but the reasons people feel they have to make those choices. The hard work doesn’t just need to be done by those who are pregnant (or making choices about what to do about pressing charges), but by all of us.”
Yes, thank you for stating it so simply: singling out the choices pregnant women make reflects the larger societal problem — that the disabled are basically the responsibility of their parents and none of the rest of us.
I think there are a lot of things that would make change a lot faster if people did the hard work involved. I won’t condemn individuals for choosing to take the easy route … but I also don’t think that not condeming individuals equates to not condemning a larger-standing “norm” or not discussing the implications of the “easy” choices.
But it is disingenuous to condemn women for making choices you don’t like when they’ve got no support to make different ones.
And no one has told you to sit quietly by and not say anything.
Sally and La Labu, thank you for articulating so ably what I wanted to say about this article and couldn’t express anywhere near as well as you did. Maybe you should get together and co-author a follow-up piece!
Sarah, I don’t think that dragging this topic into the open increases ignorant attitudes about the disabled”“it gets people to talk, and it means that those who are disabled, or have disabled children, have a chance to speak up where their voices might have been overlooked.
Are you serious? Because this discussion seems to me to be one of the most disability-hating things I’ve read in ages. Except for me, disabled people are present on this thread only as burdens. We’re only tragedies to be prevented. We have heard many, many stories about why people might want to abort a fetus that would be disabled, but not the slightest hint about why a parent might want to bring such a terrible burden into the world, let alone why such a person might want to exist. People have repeatedly rhetorically linked the act of curing disabilities, which almost everyone takes to be a good thing, with the act of destroying disabled fetuses. How can you not think that people are going to come away from this thread thinking of disabled people, as a class, as burdens on their families or society? And it’s not as if this blog is chock full of discussions of disability that would give you any other impression. There’s not even a category for disability to file the post in: it’s under “abortion and reproductive rights” and “fat, fat and more fat.”
OK, Sally says there is no discussion of health care for poor individuals and for the disabled under/uninsured in the lefty press, blogosphere, etc. Not so. In my state of Misery (Missouri), the jackass Republican gov. and legislature has kicked special-needs kids and disabled adults off Medicaid, and aims to stop all Medicaid by 2007. This has gotten lots of discussion in the local blogosphere, in the local newspapers, etc.
Forget disabled for a second. It is a rational choice for women to abort ANY pregnancy simply because there is little societal support for children and for mothers. No affordable high-quality daycare. Increasingly, no insurance or no affordable health care insurance. Mommy-tracking. Earning 67 cents for every male dollar.
Now, just add severe disability to the mix. In addition to the no daycare, etc, listed above, add: No respite care for stay at home moms. No insurance, because the state won’t support Medicaid and you have maxed out the insurance for the child. No career. High likelihood that husband or significant other will tire of the constant stress of severely disabled child, and abandon you, with the upshot that you are a currently unemployed (and haven’t had a job for a while) woman with no health insurance and a black mark against you for being a single mom of a kid whose needs are likely to cause you to have work absences. Moderate likelihood that other children in the family will have behavioral problems related to family stress and relative neglect of nondisabled members. Substantial likelihood of bankruptcy due to medical debt, loss of house and other assets. Inability to assist other children in getting college educations. Realization that society doesn’t care jackshit for disabled OR for abled children, since if this were a child-favoring society, there would be universal health insurance/care, free or cheap child care, respite care by trained developmental professionals, free college for the poor, etc.
It is hardly surprising if some women decide that the rational option is to not bear a severely disabled child if they know the diagnosis prenatally.
I don’t buy the argument that upper-class and middle-class people need to be at risk for bearing severely disabled children in order to get political action. They already ARE at risk, since few disorders are diagnosable prenatally or are genetic in origin, and squat has happened to take the burden off individual women’s shoulders and distribute it among the rest of society.
OK, Sally says there is no discussion of health care for poor individuals and for the disabled under/uninsured in the lefty press, blogosphere, etc. Not so. In my state of Misery (Missouri), the jackass Republican gov. and legislature has kicked special-needs kids and disabled adults off Medicaid, and aims to stop all Medicaid by 2007. This has gotten lots of discussion in the local blogosphere, in the local newspapers, etc.
That’s good to hear. I mostly read feminist blogs, and I can’t think of a single one that covers disability even occasionally. Maybe I’m reading the wrong ones.
They already ARE at risk, since few disorders are diagnosable prenatally or are genetic in origin, and squat has happened to take the burden off individual women’s shoulders and distribute it among the rest of society.
Well, what do I know, but it seems to me that more than squat has happened. When my uncle was a child, my grandparents had two options: take care of him at home, with literally no help, or send him to the incredibly grim state mental hospital. (He spent some time there. My grandparents pulled him out because it was clear he was being beaten.) I don’t even know if the concept of a group home existed. I know for a fact that the agency that runs the group home in which he now lives didn’t, because my grandparents helped found it, as I said, with the help of a powerful politician who also had a disabled child. The actual house in which he lives, which is on a nice, lower-middle-class residential street, was purchased and turned into a home for disabled adults about ten years ago. Before that, he lived in a separate “cottage” in a residential facility.
Things are very bad now. But they are much, much better than they were in the ’50s.
Sally,
You might find Rivka’s blog Respectful of Otters interesting. She doesn’t update as frequently as other bloggers, but she has some truly stunning posts about feminism and disabilities. One of the best posts/essays I’ve ever read regarding disability rights and being pro-choice is Ambivalence.
(The second like isn’t showing up in preview, but I can;t find anything wrong with it. I hope it works.)
Sally I think one of the ways we have been talking at cross-purposes is that I do not believe that if someone has an abortion for fetal abnormality that most of the time that has anything to do with the potential of the fetus. I hope I didn’t come across as believing that that’s because I don’t believe those with disabilities don’t have potential. It’s because I think the list you gave, rather than the ideas about potential, are what people actually think about when they make the decision to abort fetuses.
The only person I know who had to deal with anything like this decided to have an abortion because one of her children was really sick with a heriditary disease and she didn’t think she could cope if she had another child who got sick (there was no testing pre-natally for this disease).
I don’t think that woman was making any statement about the value of her living child’s life, or the potential of the child she didn’t have.
I do love that Barbara Ehrenreich article that Rivka linked to (I love most things she writes), and think she makes a really important point, which is that abortion for fetal impairment is treated as different, and more moral, than other abortion, and this should be opposed. But I think abortion for fetal impairment is exactly the same as any other abortion. Women weigh up a variety of factors in deciding whether or not to take a pregnancy to term. Most commonly would be a list something like: what resources they have, what the impact the pregnancy would have on their life, what impact the pregnancy would have on the life of other children, and whether they feel they can be good parents.
I think most women probably think about exactly the same factors if they’re told about a fetal abnormality. For some women the answers to those questions might be different, but I believe that’s a statement about our society, not a statement about the potential of those with disabilities.
I think people who read this thread will come away with a wide variety of views on the matter.
For the record I believe at the moment having a disabled child is often more expensive and labour intensive than having a non-disabled child, but that is because of the way we organise our society. I believe that society is a burden on disabled people, not the other way round.
Things are very bad now. But they are much, much better than they were in the ’50s.
Or even the ’70s.
Because this discussion seems to me to be one of the most disability-hating things I’ve read in ages.
Worse than the people prattling on about how you should rely on able-bodied neighbors for disaster assistance or that it’s “survival of the fittest”?
You are also assuming that you are the only person on this thread who has a family member or a child with a disability.
No, you’re right. That was worse. But that’s not saying much!
I’m not, actually. But I am, I think, the only person who mentioned it, except Lu, who mentioned it to say that her profoundly disabled child is a burden. So I stand by what I said: on this thread, disabled people are visible only as burdens on other people.
Thanks for posting that, Jenny.
So she took a look at her situation and decided not to have another child. That seems to me to be slightly different from a regime, planned and sanctioned by the medical community, in which women over a certain age are routinely screened for a particular genetic abnormality, in which when found to have it they are immediately informed that they will have to make a decision about whether to abort, and in which upwards of 80% do eventually have an abortion. If doctors said to expectant parents “your baby will be a girl. You should know that girls face discrimination in our society, but that many go on to have full and productive lives. You have a week to decide whether to abort,” don’t you think we’d believe that something was being implied about female lives?
We have heard many, many stories about why people might want to abort a fetus that would be disabled, but not the slightest hint about why a parent might want to bring such a terrible burden into the world, let alone why such a person might want to exist.
I haven’t brought this up, because not being disabled and not having a disabled child, I kinda felt I’d just be displaying privilege, or being patronizing….but since you brought it up….
I didn’t want the prenatal screening because I was willing to deal with having a child with Down’s. I wouldn’t have aborted. It’s easy for me to say now, because that didn’t turn out to be the case, but it’s the truth. There is no family history of inherited genetic abnormalities in my family, let alone the ones incompatible with life, so I didn’t see the need to take the risk of miscarriage. Again though, I’m feel I’m displaying privilege by saying that, because I have a decent paying job and I have health insurance. I live in an area where there is plenty of services available for disabled children, including parks. So, there’s that. If you ask me “why” I’d not abort a disabled child…I guess I’d have to say, “because I’d love her regardless.” Yet that doesn’t seem fair to say either, because I don’t assume that the parents who abort wouldn’t or don’t love their children either. Nancy P brought up some good points about the thoughts that may be going through folks’ minds. I dunno. It’s hard to talk about.
There aren’t any disabled people in my family. But, when I was growing up, I attended schools where there was some level of “mainstreaming” of disabled kids…and that trend continues today. I think desegregating disabled children has the potential to affect the way people think about the disabled, and take away that fear. But like Nancy P said, there is a mistaken notion by the public at large that parents of disabled children have all kinds of public assistance, or are “cutting a fat hog in the ass” at tax time, which just isn’t the truth. I found this out by some of the ignorant commentary that was shunted my way when my daughter was in therapy; there were people in my neighborhood and my local union who thought I had some kind of financial free ride. They had no idea that my daughter’s monthly medical bills were three times my mortgage payment, and that yes, I did have to pay them or she would go without services! When they asked about why I wasn’t fixing up my house, I had to explain that the fixing-up money was all eaten up by medical expenses. They thought that the State paid the medical expenses for me! It’s unreal.
When my daughter was born, she was given a 50/50 chance to live. Then, she was given abysmal odds of ever being able to…walk, talk, see, think. With all the complications she had, not much was expected out of her. Yet I didn’t care. All I knew was that I loved my daughter. I loved her even if they had to amputate one or both of her legs, like they thought they would have to do. I loved her even if she was going to be blind, as was expected. I loved her even if she was going to be retarded, as was expected. I did not care. I still held her hand and sang to her, spoke to her, read her stories. Told her about the world. Later on, I got to hold her. I didn’t know what the future would bring. That’s not the same as dealing with a fetus; a born child is an actual person, not a potential person. And please, if I’m just babbling on about my privileges, someone shut me the fuck up….I’m just trying to present my view of why someone would want to have and raise a disabled child. Love, check. Support, check. I think if our society provided more support (including financial), and more resources towards disabled children, more parents would feel able to take that plunge. Because yes, it is a greater burden to have a child with special needs. Few people are prepared for it….I know I sure as hell wasn’t. And yeah, I don’t know what the hell I would have done if she needed a wheelchair, because insurance pays for wheelchairs but does not pay for household accomodations, which I never would have been able to afford on top of all the rest of her medical expenses. I would have been in the position (like I already was) of not being able to afford the bills, yet earning too much money to qualify for help. The state of Illinois has such a strict line on qualifying for help, that even on unemployment I earned “too much”. You had to basically be on public aid or SSI to qualify for most assistance….ahh, I don’t have time for this!
I gotta get going to work. I won’t be back here till this evening. I hope dearly that I didn’t offend anyone by this post. If so, I apologize in advance as I won’t be here for most of the day to apologize in a timely manner. Peace.
Sally, I did not mean to disrespect you or any disabled person by saying that my son was a burden. I was responding mostly to a comment of Bean’s in which she blamed discrimination and societal attitudes for the perception of disabled children as a burden. For me it’s not a perception, it’s a reality, and to deny that reality denies the real issues that parents face when they have to decide whether to abort a child with a severe abnormality, and the real issues that society faces of how best to support disabled people and their families.
The truth is that every one of us both burdens and contributes to society; every one of us is both able and “disabled” in some way. I for example can barely find my way around the block, and make people crazy demanding excruciatingly specific directions whenever I have to make my way to an unfamiliar place. Granted, this is more of an annoyance than a burden, but you get the general idea. As soon as you start trying to value any one person’s net contribution to society, you are headed down a dark and dangerous road.
I have a question for Bean and one or two others who have said that the burden on me and other parents of disabled children should be spread evenly across society (I have said I agree in principle that this is a good idea): how would you do this? The only way I can think of is institutional care, and we’ve already talked about that. As a practical matter, it seems to me that there’s no way around the parents’ having the primary responsibility and the emotional investment (which is a bigger part of it than you can suspect if you haven’t been there). Any ideas, anyone?
Some time back Amp made a post in which he said:
I didn’t comment on that thread, which IIRC very quickly turned into an old-fashioned all-or-nothing abortion debate, but I was struck by the implication that pro-choicers would not want lower abortion rates. I think (and I don’t want to presume to speak for Amp here, so I emphasize that this is my opinion) Amp touched on something very important: hard-line pro-choicers tend to emphasize a woman’s absolute right to an abortion to the point of callousness regarding the fetus (“it’s just a ball of cells”) because by according it any moral value at all would give ground to pro-lifers, would admit that there are no absolutes here, only a difficult balancing act. (Btw, MT, I believe that gray area is neither so small nor so lonely as you might think: you will have to share it with me at any rate, although if forced to pick a side I pick pro-choice.)
In this discussion we are trying to balance the rights of women, fetuses, and the disabled, and it’s not easy. I don’t have the answers either.
Excellent points, Sally. I went back and re-read the thread after you took your break, and now I think I see why you needed one. I can see a definite attitude in many of the posts (including parts of mine, now that I look back at them) that stressed the negative side rather than the positive side of disability. Even the word disability is negative. So I apologize.
People who choose to celebrate, support, nurture, and love their wanted children should not be treated as if they were misguided, or religious wingnuts, or ignorant if those children happen to have traits or characteristics or diseases that are not considered ideal in this society. Members of this society should not pressure pregnant women to choose to abort fetuses who test into certain groups, nor should they pressure them to carry these fetuses to term. Every child should be entitled to treatment as a valuable member of this society.
Too bad it’s not that way now. What can we do about it? The Dems have mostly decided their new slogan will be “Together we can make America better” or some such drivel. Do we honestly think that “together” or “we” includes minorities, women, the disabled, the poor, GLBTs? If the so-called liberal party isn’t inclusive, than who will carry that flag?
Excellently said, Lee.
Unfortunately politicians assume that the electorate can’t tolerate complexity and has the attention span of a gnat, so we get drivel instead of nuanced discussion and feel-good slogans instead of policy proposals that actually try to address the real and hard questions.
One can’t entirely blame the politicians. Complexity is hard. Simplicity is attractive. That’s part of why Bush is still polling close to 40 percent.
But I am, I think, the only person who mentioned it
Yes, you are, and I’m rather surprised that you decided to take a swipe at Lu. I thought I would share my own experiences, but I’ll probably just be called insensitive and clearly not valuing the lives of the disabled, so I think it would be better to bow out.
Mythago, I’ve appreciated every single one of your posts on this thread. I was not including your posts in the negative-attitude group, and I apologize if you think I did. Please stay.
Sally, another lefty blog that celebrates the disabled is Michael Berube’s, which I thought I mentioned. I would echo what Lee has said, that all of us are burdened, and certainly, those with disabilities are as varied in their needs and abilities as the abled — some require extraordinary care, some very little at all. Many abled people become disabled. It would be crazy to think that any of us is immune from becoming more burdensome to those around us than we are now, or that those around us might not become more burdensome to us than we bargained for. It would also be crazy to take a Pollyanna view that those caring for severely disabled children are completely compensated for their burdens by intangible or emotional benefits. I don’t think that’s true, as a matter of logic and experience, which tells me otherwise.
Focusing on prenatal testing and decision making as a litmus test for determining how people must feel about disability and the worth of disabled people is extraordinarily unfair. Prenatal testing usually forces people to make choices in an information vacuum. Providing information on the reality of various disabilities would do alot of good, providing universal health care would be even better.
I choose not to share my trip down this road because of the harsh judgments people like you and Lee bring to the table.
Oops, I meant that I echo what Lu has said, not that I don’t value what Lee has said as well.
Um, Barbara, did you read my corrected post at all? Because I’m trying not to be harshly judgmental – that’s the behavior I was being critical of. I apologize if you got the impression I would string you up after you shared your experiences with us.
This is hard stuff to discuss without offending anyone. (That’s why politicians prefer not to discuss it.) I don’t feel swiped at; Sally’s reality is very different from mine, and I value her perspective.
I’d be interested in hearing other perspectives as well, but I respect anyone’s reluctance to share.
That individuals think it logical and justified to infer that a woman’s decisionto terminate a pregnancy after prenatal diagnosis is, effectively, personally directed at them and a judgment about their indvidual worth in society is just another part of the picture that portrays a woman’s life as belonging to those around her rather than to herself. I do not mean to be unsympathetic, I am in favor of spreading the burden of disability and sickness, I would willingly share much more of my resources than I do now for this purpose, but I find the notion that women who terminate are the enemy of the disabled in society to be unfair and unjustified.
bean, to state it plainly, the argument that bothers me is that a person who terminates a pregnancy as a result of prenatal diagnosis devalues the entire class of people who can be considered or who consider themselves to be disabled and is in some measure (more or less depending on the poster) responsible for the degraded place in society that disabled people occupy. This strikes me as the logical equivalent of saying that legalized abortion is causatively related to an increase in the rate of child abuse.
This is not to say that I don’t understand, and may even sometimes agree with what appears to be your position — which is that, without wishing to curtail rights, you nonetheless judge certain decisions as being immoral or at least unethical and not giving due deference to the quality of life that can be and has been attained by actual people with the same disability — that is, motivated by selfish interest or prejudice rather than by a realistic assessment. (I apologize if I misstated your position.) I can understand that — though I try not to be too harsh of a judge, certainly, I think people make decisions that I never would (or hope that I wouldn’t).
Huh?
Look, as I’ve said, I’m really reluctant to judge individuals making difficult choices. But the fact remains that parents are offered abortions upon being told that their fetus would be born disabled. Would you not see it as a problem if parents were immediately offered abortions after being told that their child would be a daughter, but not offered abortions if it were going to be a son? How about if mothers whose children were going to be black were offered abortions when their pregnancy tests came back positive but not mothers of white children? There is a social assumption that it makes sense to abort fetuses that will be disabled. That assumption is reflected in medical practice and in other parts of our society. So it’s not just a personal choice, any more than it’s a just a personal choice when a fat person goes on a diet or a small-breasted woman gets breast implants. Those examples may seem trivial compared to accepting a lifetime of responsibility for a disabled child, but they’re similar in that they’re personal choices that both reflect and reinforce society’s attitudes about acceptable bodies. And I do think that they have consquences. That doesn’t mean that I’m going to condemn the person who does any of those things.
Ack! I can see how you could read it as a swipe, and it really, really wasn’t meant that way at all. I’m not saying that Lu shouldn’t talk about her reality. On the contrary, I think it’s vital that she does. I’m just saying that Lu’s experience is on one end of the spectrum, and it’s the only experience of parenting a disabled child that we’ve heard about here. And it does seem like people here have taken it as representative. And it seems slightly problematic to think about disability issues only from the perspective of non-disabled people, which is not to say that they shouldn’t be considered at all.
Shit. That last bit was unclear. By “the perspective of non-disabled people,” I mean that the way this is posed asks people to identify with non-disabled potential parents and not think about what it means for disabled people at all. And that’s a way of thinking about disability issues, I think, that tends objectify disabled people. I realize that that’s a major point of contention here: I think this is about disabled people, and other people here think that, since fetuses don’t have rights and since they don’t believe that existent disabled people are harmed, it doesn’t have larger implications for disability rights.
You make a couple of excellent points, Sally. I do speak as a parent of a disabled child, rather than as a disabled person myself (that was mostly what I meant when I talked about our different realities). And my child is much more severely disabled than most disabled people or most babies born with prenatally detectable abnormalities, as bean has pointed out. It would be great to hear from other folks who have raised disabled kids or who have cared for disabled people.
I went out of my way to emphasize the amount of work involved in caring for my son not to devalue disabled people or to characterize my experience as typical (I’m all too well aware that it’s not) but because, again, I think that to ignore or minimize that work makes it harder to discuss the issues realistically — and possibly easier to say “disabled people and their families don’t need extra help.” I wonder to what extent the fear of being left high and dry affects parents trying to make hard decisions.
Using the situation you’ve described I think you’d start by making sure the resources required to raise a child with severe (or any) disabilities were met collectively, not individually. Then you’d ensure that looking after the child was respected as work and that people were only required to do other work to the extent that they wished. You’d provide relief care in the home, as much as you can, and probably respite care outside the home as well. You’d probably also need to make sure that peole weren’t isolated in their living situation.
Parents will probably still have to take the primary emotional responsibity for their children, but the physical
Obviously in a country that doesn’t even have universal health care there are going to be problems instituting a system like that, but it’d be possible if we chose to organise our economic system differently.
Yes, but I’d see it as a symptom, not a cause. I believe that the only effective way to fight that situation would be to change the situation of girls in society. The other example you give doesn’t stack up, because women have prenatal testing for race when they look at themselves and the father. Believe me when I say my attitude towards this is dictated by my attitude towards abortion and nothing else, and it wouldn’t matter what examples you gave me, I’d give the same reply.
I live in NZ rather than America, so my experience may be different. But I don’t agree that there’s a social assumption that it makes sense to abort a fetus that will be disabled. I think at most I’d say that there’s an attitude that it’s OK to abort disabled fetuses (even among people who disagree with abortion in most cases), but I wouldn’t go any further.
I disagree with two aspects of this. First I don’t think someone going on a diet, or getting breast implants, reinforces society’s attitudes about acceptable bodies. They reflect them sure, but I don’t think they have any
Secondly, I agree that someone who goes on a diet or gets implants is usually thinking ‘my body is not acceptable’. I don’t agree that this is necessarily true for people who are terminating, for fetal abnormality. I don’t think they’re necessarily thinking on any level ‘the body of this baby would not be acceptable’.
It’s a reality that parenting a child with an impairment usually takes more time and resources than a non-impaired child. Like I say I think that should change, but I believe that to charactertise people who decide they don’t have the time and resources to do that as making a decision about acceptable bodies ignores the reality of disability that our society creates.
I think that’s a good summary of the fundamental disagreement.
Some very interesting points here. Everyone’s so polite, and so politically correct!
Is it wrong of me to point out that some traits are desirable, and that it’s natural for parents to want their children to have as many desirable traits as possible? My mother jokes that when she was pregnant she “prayed every inch of my long legs” onto me.
Fate is a joker, and it’s possible I could some day end up caring for a disabled child. I would do my very best to love and care for it well. That’s compassion, one of the traits that makes us human. That doesn’t mean that I don’t hope to have a child who’s pretty, red-haired like my husband, hopefully a girl since I wouldn’t have the first inkling what to do with a boy, intellectual rather than jockish, and please God not handicapped. Does any expectant mother hope and pray for a disabled child?
I think it’s natural for a mother to say of her disabled child, “My child is as good as anyone else.” She’s even right, if what she means is that all human life should be valued and cherished. If what she means is that Downs Syndrome really isn’t a disability, and we should all rush out and have as many DS babies as we can because it’s so much fun, then mother love has caused her to delude herself. Do we really have to pretend to agree with this out of politeness?
I think it’s natural for a mother to say of her disabled child, “My child is as good as anyone else.” She’s even right, if what she means is that all human life should be valued and cherished. If what she means is that Downs Syndrome really isn’t a disability, and we should all rush out and have as many DS babies as we can because it’s so much fun, then mother love has caused her to delude herself. Do we really have to pretend to agree with this out of politeness?
Allie: first, I don’t know quite what to make of your use of the term “politically correct.” I loathe that term, because where I live, it is most often used to infer that someone is being too polite, too respectful, when in reality they should just let all the supposed held-back obnoxiousness fly. But perhaps that’s not what you mean, so I’ll let it pass. There’s no one on this thread who is trying to say that a disability isn’t really a disability! Just that some of the dis in disability is artifically imposed from outside, rather than a direct consequence of the disability itself. And with that said…
I have a question for Bean and one or two others who have said that the burden on me and other parents of disabled children should be spread evenly across society (I have said I agree in principle that this is a good idea): how would you do this? The only way I can think of is institutional care, and we’ve already talked about that. As a practical matter, it seems to me that there’s no way around the parents’ having the primary responsibility and the emotional investment (which is a bigger part of it than you can suspect if you haven’t been there). Any ideas, anyone?
Lu, what I had in mind….well, some of it is already coming to pass. The ADA has and is helping folks with disabilities gain access to education, employment, and hell…just plain being able to go to the library, the post office, the grocery store, restaurants, even the damn bathroom! The ADA is being enforced more now than it used to be, although it’s not being enforced anywhere near as much as it needs to be. In my city, it is now possible for parents of physically disabled children to be able to take them to the park to play on playground equipment; that wasn’t true several years ago.
I think we could do a lot better in terms of the resources we provide. For example, respite care. It’s difficult for caretakers of disabled children (or adults, for that matter) to be able to access respite care—and if you’re working class or poor, about the only way to find any is to get on a waiting list for it (that is, state-assisted respite care; they give you so many hours per month). For parents of “average” children, this is called “babysitting”. Not so easy to find for parents of children who are severely disabled and/or have medical issues.
More financial assistance for families struggling to deal with the financial impact of disability. Like I said before, this was something that I did not have to deal with, but for a time I was wondering what the hell I was going to do if I had to make modifications to my house to accomodate my daughter if she ended up not being able to walk. There is a public perception that there is all this assistance out there, when there really isn’t. That’s one of the first things to go when budget cutbacks are made in the state (and I did experience the impact of cutbacks in Early Intervention and Specialized Services for Children when Illinois cut back). There is also the perception that insurance pays for a lot of services or products that it doesn’t. If a family is lucky enough to even have insurance, they can’t count on being able to afford equipment or accomodations that their child needs.
Speaking of financial impact, why are we willing as a society to shunt large amounts of dollars off to institutionalize the disabled, yet we are not willing to directly subsidize caretakers who are willing to perform home care? And when I say subsidize caretakers, I mean give them years of Social Security credit also. Why is is considered vaulable work when it is performed by strangers, but not by loved ones?
Transportation is a problem here, but that’s more of a problem for adults than for children. Finding housing is a problem, too.
There is still a trend towards segregating the disabled and acting like they don’t exist, or that they are such a small proportion of the population that they don’t really count. And that’s bullshit. It’s no wonder that many able-bodied folks are afraid of disability, or say things like “oh gosh, I wouldn’t want to live if x happened”, because they aren’t seeing that people can and do live fulfilled lives with x. Disabled people have the highest rate of unemployment in any subgroup of our population.
And disability is something that can happen to any of us. And if we’re lucky enough to live a long life, probably will.
This is a link in re Reddecca’s posts, regarding gender selection:
http://www.thp.org/sac/unit4/missing.htm
Basically, gender selected abortion is just the beginning of how women’s lives are restricted and truncated via discriminatory attitudes and policies. It isn’t enough to say that gender selected abortion is wrong and should be made illegal for the good of the community when individual families continue to bear hardships associated with the birth of girl children, and society at large disadvantages women of all ages. It won’t work. Setting a minimum age for marriage, making the free public education of all children compulsory to a certain age, making investments in reproductive health services, extending microcredit to female headed enterprises, and so on — these will make a difference — and compared to these, abortion policy is just a sideshow.
I suspect that similar investments for the disabled would ameliorate the position of the disabled in society to the point that parents would not be as frightened of bearing and caring for disabled children as they are now, but there’s no easy comparison because of the tremendous variety of disabilities.
I am sorry that I missed this discussion. Even though the ship has sailed, I hope to come back later and respond to the articles in more detail. In response to some of the comments however, I have two quick notes:
1) It’s not just PC-nonsense to use person-first language. People for and against prenatal testing and abortion have responded saying things like “Down syndrome baby.” The child is a child first, with a disability second. It might be slightly more awkward initially in speech or writing, but it makes the most sense. Take any other group that seen perjoratively and stick that in front of “baby”. See what I mean? I have a child with Down syndrome, not a “Down syndrome child.”
2) At my daughter’s 2-year check-up yesterday, her pediatrician suggested that while my daughter is certainly above average for children with Down syndrome, she is also likely above average for all children. I think the doc is overly optimistic, but it certainly bears consideration. Some people with Down syndrome are very high achieving indeed. Like the rest of us, there’s a standard bell curve distribution. And that bell curve overlaps with the typical development/IQ distribution bell curve.
All that said, I agree with what Bean has said here.
I remember arguing this with you many years ago, Bean, but it seems that we’re in the same place in the end. I no longer feel like the “slippery slope” argument should preclude discussion of shades of gray.
Now on to the original posts – excellent work, Amp, I appreciate it very much.
Post 1:
It’s very interesting that the author puts the onus on women. It’s all about women choosing. As much as I’d like for that to be the case, it’s just not. Women aren’t making choices in a vacuum, and sometimes they aren’t making choices at all. I know a 36-year-old woman who was pressured by her husband to have amniocentesis because he was afraid of having a baby with Down syndrome. I don’t think that her situation is uncommon, and I don’t think that women are making decisions about whether or not to terminate pregnancies for wholly selfish reasons. Often there are family considerations too.
But I’d like to read your source for the statistics, Amp. (Down syndrome, which only occurs in 1 in every 800-1000 pregnancies.) It’s my understanding that trisomies might account for up to 50% of all pregnancies (many spontaneously abort, often before the woman knows she’s pregnant) but about 1 in 800 live births, which is a whole different ball of wax.
Post 2:
Amp said: f I were a pregnant woman, told that my fetus had Down syndrome, I believe I’d choose to abort. People with Down syndrome are significantly more likely to die young (Down syndrome is associated with severe heart conditions)
I understand that most people choose to abort when they learn that they’re carrying a fetus with trisomy-21. It’s a damn scary position to be in. But I think that the die young/heart condition argument is a bit weak and outdated. 1) Heart defects are the most common congenital birth defect, regardless of chromosomal status, and 2) Today’s technology insures that most AV Canal defects can be sucessfully repaired. (My daughter had a serious heart defect of the type most commonly associated with trisomy 21, complete AV Canal. It was repaired and she’s not expected to have any long term effects.) 3) Morever, serious heart defects are detectable safely through diagnostic ultrasound prenatally, again, regardless of trisomy status.
Post 3:
I disagree with your premise here. First, I don’t believe the folic acid connection yet; I’ll need to see much more evidence first. (I was young, had no family history, and took a supplement for 6 months before conceiving on top of a healthy diet, and still had a baby with trisomy 21.) Most research I’ve seen suggests that trisomy errors are likely to be present in a woman’s egg supply when she’s born. Second, there’s no arguing that Down syndrome is not something most of us would choose for our children. There are undeniably health and developmental risks. I am adamately pro-choice. But I do see a big moral difference between
A) making a decision to insure that my child is as healthy as possible, and
B) making a decision that the fetus I’m carrying isn’t healthy enough to be born.
In the first case we’re talking about the same child, just healthier. In the second case we’re talking about scrapping this attempt in favor of a “better” child.
Post 4: I agree, with the same reasoning as above.
Post 5: The trick is that it is possible, though not common, to have Down syndrome and not be measurably disabled: http://sarahlynn.blogspot.com/2005/06/blogoversary-and-role-models.html
Post 7:
I don’t think efforts to cure or prevent disability should be stopped, because some disabled people would prefer to be non-disabled. But at the same time, I think it’s more important to reform society, and the way we view disability, ability and the pursuit of happiness. That, in the end, has more potential to improve human lives and bring happiness than medicine does.
I agree. And I love my daughter with all of my heart. And I closely follow medical developments that might “cure” her. And if they discover a safe medical treatment to alleviate the developmental concerns associated with Down syndrome, I’d seek this treatment for her in a heartbeat. Because she’s still my wonderful daughter, with or without Down syndrome, but I want the most for her. And I don’t want her life to be any harder than it has to be. And until she’s old enough to make these decisions for herself, it’s my job to make them for her.
Hi, Sarahlynn. Thanks for your posts here.
1) Regarding “child with Down” versus “Down child,” clearly you’re right. I’ll try to do better next time.
2) Unfortunately, I no longer have the link I used as a source for my stats. But given your greater knowlege, it’s probably you’re right and what I wrote was mistaken.
3) What I said about folic acid was meant as a sci-fi hypothetical, not as a realistic proposal.
4) Thanks for correcting my outdated info regarding heart conditions.
Otherwise, I think we’re in agreement. Which may not be as much fun as a nice juicy debate, but nonetheless I’m glad you posted here.
Hey, I’ll take agreement any day! Especially today, when I am tired after defending a woman’s right to write an essay to “mothers” rather than to “parents” against criticism from one dad who takes any such “exclusion” personally. Sadly, that discussion was not on a blog where such debate is encouraged.
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