Post 1: Trite criticisms of a Washington Post essay.
Alas reader “Lee” sent me a link to this Washington Post piece by Patricia Bauer. Here’s a few choice bits, but you may want to read the whole thing.
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
That’s enough about the essay itself. What about the ideas it brings up? Well, first of all there’s the pro-life response. Let’s get that out of the way.
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
Is the reduction in Down syndrome births an issue that involves abortion at all? Put another way, if we took abortion out of the equation, would so many people be appalled at a massive reduction of Down syndrome births?
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?
Future Imperative asks “If aborting an embryo, no matter how crippled, appalls you, how would you feel if you had the technology to cure that unborn child completely?”
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?
The truth is, I think disabilities disable people. Is that bigoted of me?
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
Secondhand Smoke, discussing the WaPo essay, writes:
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
In my heart, I can’t get past my belief that we’d be better off with less disability. Disability will never be wiped out, but as science advances it will be reduced, and I believe that’s good.
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.
