PZ also has a post on the abortion and Down syndrome issue. In it he says this:
I recommend reading any of Michael Bérubé’s stories about having a child with Down Syndrome— he doesn’t have any regrets at all. Or you could read about how Bérubé schooled Peter Singer, and Singer did the right thing and changed his mind. He also wrote a book on the subject,reviewed in the NY Times.
I was thinking of Michael and Jamie Bérubé and of Peter Singer during all this, so I was glad to see that link, which is to a piece I read with interest at the time. (The time was December 2008.) Reading it again reminds me what a fiendishly good writer Michael is. Read the whole post, because it’s fiendishly good. I’ll just extract a little, because it’s relevant.
Surely you’ll recall—my post was only two months ago!—that in the passage at issue, Singer wrote, “To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player.”
Well, Singer wrote to me to say that my reply to this passage suggests that he is wrong about Down syndrome, whereas in fact it takes more than a couple of exceptional children here and there to challenge the general rule. After all, the passage speaks of expectations, and although people do win the lottery now and again, it would be unreasonable to buy a lottery ticket and expect to win. Professor Singer then asked me to direct him to some evidence that would indicate that Jamie is not anomalous—and, he said, this is not an idle challenge: if he is mistaken about Down syndrome, he will correct himself in the future.
They wrote back and forth, and Michael requested and got permission to quote his own replies.
Many thanks for noticing that blog post, and for taking the time to write. Thanks also for your kind words about Jamie. I do, in fact, enjoy a handful of Woody Allen movies here and there;Broadway Danny Rose is a wonderful piece of work, and I’m fond of Bullets Over Broadway as well. But I do think “we cannot expect a child with Down syndrome to chat with us about the latest Woody Allen film” instates a distinctly Upper West Side-y performance criterion, and is worth critiquing on those grounds alone. More seriously, I note that in the 1920s we were told that people with Down syndrome were incapable of learning to speak; in the 1970s, we were told that people with Down syndrome were incapable of learning how to read. OK, so now the rationale for seeing these people as somewhat less than human is their likely comprehension of Woody Allen films. Twenty years from now we’ll be hearing “sure, they get Woody Allen, but only his early comedies—they completely fail to appreciate the breakthrough of Interiors.” Surely you understand my sense that the goalposts are being moved around here in a rather arbitrary fashion.
I do appreciate the fact that you’re not issuing an idle challenge. I don’t think you would do that. I have three responses to it.
Here is the second response:
The larger point of my argument with your claim is that we cannot (I use the term advisedly) know what to expect of children with Down syndrome. Early-intervention programs have made such dramatic differences in their lives over the past few decades that we simply do not know what the range of functioning looks like, and therefore do not rightly know what to expect. That, Professor Singer, is the real challenge of being a parent of a child with Down syndrome: it’s not just a matter of contesting other people’s low expectations of your child, it’s a matter of recalibrating your own expectations time and time again—and not only for your own child, but for Down syndrome itself. I’ll never forget the first time I saw a young man with Down syndrome playing the violin—quite competently, at that, with delicacy and a sense of nuance. I thought I was seeing a griffin. And who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors? Likewise, this past summer when I remarked to Jamie that time is so strange that nobody really understands it, that we can’t touch it or see it even though we watch the passing of every day, and that it only goes forward like an arrow, and Jamie replied, “except with Hermione’s Time-Turner in Harry Potter,” I was so stunned I nearly crashed the car. I take issue with your passage, then, not because I’m a sentimental fool or because I believe that one child’s surprising accomplishments suffice to win the argument, but because as we learn more about Down syndrome, we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.
There’s more; it’s all that good.
“We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer or tennis player”
I got news for this guy…. a kid is an individual. The chance of him or her loving what you do – is kinda slim. The really lucky ones end up with humans they can relate to as fully automous beings with their OWN interests. Chances are your little Mini-Me – while not fulfill your dreams regardless of their cognitive status. Chances are – you like every parent will have to deal with the fact that human reproduction is a total crap shoot.
You could bring a total sociopath who doesn’t give a shit about other humans subjectivity into the world!
Clearly it happens ALL THE TIME.
I think the reasonable expectation is that the person will exhibit the symptoms of the syndrome.
Sarcasm alert :
How about every year we give everyone a Right to Live test? Anyone who scored too low, due to forgetfulness, or needing glasses or being too emotional to concentrate at that moment, would forfeit the right to live. Surely a clever person like say, a professor, could help design an appropriate test?
/end sarcasm
Expecting people to engage in calm, hypothetical discussions when it is their real children we are repudiating really sucks.
Just their child? How about themselves?
People with disabilities are SUBJECTS not OBJECTS.
cityzenjane @5, I get what you’re saying (though I’d quibble that, like any person, they are both), but the issue at hand is the decision to terminate a pregnancy on the basis of the fetus being diagnosed with trisomy 21 — and a fetus is not yet a child.
“the issue at hand is the decision to terminate a pregnancy on the basis of the fetus being diagnosed with trisomy 21 — and a fetus is not yet a child.”
Exactly. No one is being denied the right to deliberately have a child with severe disabilities, but we have every right to probe the ethics of that decision as well. Mental defects that preclude full development of the mind are particularly worth discussing.
Something I have always recalled from my earliest disabilities studies courses is that those of us who are able-bodied are only temporarily so. The delusions that so many hold about their own precious abilities, all of which could be blasted away in a split second with a little rupture in a vessel, or a crash in a car, or an error on someone’s part. . . et voila the able bodied person would be rendered no long able bodied.
Also, the knowledge available about Down Syndrome and its consequences is currently vast and growing daily. This includes the several causes for the condition, as well as the huge range of possible treatment strategies. Medical doctors tend not to know much about cognitive/linguistic development, nor about learning. Parents of children with disabilities receive a lot of unasked for advice about how to raise their child, what to do/what never to do, and most of it is based on approximately zero knowledge. Or knowledge that is so out of date that it is worse than worthless.
It is the mother’s choice to make. Period. But as others have said, it is nowhere near “immoral” to permit a child w/DS to be born, just as it is not immoral to permit a temporarily able bodied child to be born.
Children do not, as a rule, become disabled. Disability generally strikes long after we are children and usually long after our children are grown. So so much for that sophistry.
Further is the irony totally lost on you that the sort of semantic games the underlie your response require a level of mental development that is simply not possible for people with Down Syndrome? You are exhibiting “cognitive/linguistic development” that many people with normal intelligence could not match and all to deny the obvious.
But in any case, you did a great job of shifting the goalposts. No one is advocating aborting children for merely having conditions that inhibit general physical ability. Down Syndrome is a clearcut pathology and all the feel-good rhetoric in the world is not going to change that.
Out of curiosity please list the “causes” other than a trisomy of chromosome pair 21 that you recognize.
Not possible? How would we know? All those people who ignored, institutionalised or otherwise deprived people with DS – for decades – from any form of educational or other development of whatever abilities they might potentially have been able to develop.
“People with Down Syndrome” are not all alike, just as people with autism or other intellectual or developmental impairments are not all alike. Many individuals with various specific diagnoses can develop, with appropriate educational and other support, into independent individuals who can live lives not very different from others with no diagnosable conditions. A few have lifelong, devastating, impairments that ruin the finances, the relationships and the health of the bewildered, desperate families who try to care for them. Most are in between, able to live fairly satisfying lives with a specific/ little/ some/ substantial support.
I put a relevant comment in the other thread. http://freethoughtblogs.com/butterfliesandwheels/2014/08/the-cabal-strikes-again/comment-page-1/#comment-2682000
mildlymagnificent:
It’s pretty clear that for you this constitutes a “reasonable expectation” for a person with Down syndrome.
I take it that therefore you also consider that “we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.” is specious.
Without parsing your sentence too carefully, we really don’t know.
We don’t have an in utero test that will tell us, definitively, how severe an intellectual disability might be. Let alone how amenable – or otherwise – that disability might be to amelioration by intervention and education. If someone was hovering over a yes/no whether to continue such a pregnancy, I don’t have any idea whether an ultrasound or other investigation could determine the presence and/or severity of heart defects, for instance, if that was important to the parents. In a country like Australia, repairing a hole in the heart or other abnormality isn’t such a financial burden as it can be in other places, but for some families it would be far too much to manage.
Whether any opinion about “reasonable expectations” or “quality of life” for any given individual with Down Syndrome is or is not specious is a bit beyond me. It’s all too easy for outsiders to look at the Special Olympics or see disabled people with Down Syndrome happily travelling to and from their jobs – which are most likely in a sheltered workshop of some kind – or being involved in swimming lessons or drama and other performances and think that’s it’s OK for families to live with such problems and support their family members. We don’t see so much of those people whose disabilities are so serious that their families cannot involve them in such activities.
I’d be perfectly happy to tutor a DS child to improve their reading, writing, speech comprehension and use of speech themselves and introduce or enhance whatever facility they may have with numbers. I’ve done it before for other non-specific intellectual disabilities as well as struggled along with kids with ASD whose intelligence is not much of an issue but whose ability to cooperate and benefit from teaching/ learning environments is impaired, sometimes quite badly.
But it’s not up to me or anyone else to advise a pregnant woman what she should or shouldn’t do when faced with such a decision. What people need to know is that the chances of impossibly-hard-to-deal-with disabilities is not that high, but there will be some, or many, difficulties which will take some effort to learn to deal with and a fair amount of time to get to the best possible outcomes. Unfortunately, many of the non Down Syndrome, impossibly-hard-to-deal-with, disabilities come as a complete surprise and are only recognised once the child is born. Severe forms of ASD are the prime example here (though that might reflect my own family’s experience).
I must say the wiki on the topic is quite useful as an initial overview. http://en.wikipedia.org/wiki/Down_syndrome
John Morales, it is never a question of whether your offspring meet up to your expectation – they have no duty to do so – but whether the parents live up to their needs. The latter sometimes depends on whether encouragement, support, education are available in a timely manner to the parents.
Case study: I was born with epilepsy, not genetic but probably oxygen deprivation during a difficult birth. By sheer luck, I did not have the classic symptoms and didn’t even get a firm diagnosis until my late 20s. By then it had been proved that I could read and write, even have the odd original thought.
Diagnosed at, say, two years old I might well have been carted off to somewhere which either restricted my activity to prevent physical injury or had me drugged to the eyeballs. Either way, not much education and no opportunities at all. I would not have lived to be 72.
But the difference between me running the odd PZ event in retirement and ranting fiercely when the mood takes me, thus thoroughly enjoying life, and being dead by now is not in the diagnosis but in the social and physical barriers which were or were not put in my way because I was “odd” etc. All exactly as cityzenjane explains so well in Ophelia’s other thread.
Dawkins is a few months older than I. One aspect of his privilege to which we might pay more attention – for he certainly will not – is that until he met Stephen Hawking when they were both middle aged he had probably never run into a successful person with a severe disability who was doing perfectly fine, thank Yer ‘Ighness.
“People with Down Syndrome” are not all alike,”
No one said all people with Down Syndrome are “alike.” This sort of strawman/goalpost-shifting is tiresome.
“Many individuals”
That is vague and uninformative for making a broad analysis. Do you have any hard numbers on what percentage of people with Down Syndrome who can live independently without supervision? Who can read at the benchmark of basic adult fluency (say 6th grade level)? Etc.
***
For those I have outraged, this maybe a culture clash of lingering Korean/Confucian values within me versus European post-modernist sentiments. The intellect is right after familial piety in the Asian value hierarchy, probably even more so than being wealthy. It just seems totally self evident to me that a rational person would never knowingly have such a child, but obviously some of you feel very strongly about it as a valid choice. When I think about it, I can’t recall any Korean or other East Asian families I know with an openly mentally retarded child. It must get swept under the rug to avoid stigma in the community. I need to ask around because I am curious how this has played out both historically and in contemporary East Asia.
[meta]
Maureen and mildlymagnificent, I appreciate your responses.
—
Yes.
I certainly didn’t intend to suggest the particular interpretation you repudiate; I was just using the terminology of the OP’s quotation.
Can we imagine an alternative world in which traits like empathy and emotional intelligence are highly valued, but where “intellect” (in the conventional sense) isn’t really considered that important? Where having a child with limited empathic abilities is regarded as a terrible thing, and where the primary criterion of whether a life is considered “worth living” is the ability to enjoy a full range of emotional engagement with other people, but the ability to do calculus or read beyond a certain level is merely a pleasant bonus?
If we can imagine that world, can you give me an objective reason why those values are any less valid than the ones you’re displaying here?
Has anyone arguing in the negative here asked people with Down Syndrome what they think about other people hypothesizing about their worth as humans?
I’m confused. I certainly would not attempt to tell anyone what they “should” do in that situation. I don’t even know what I would do (not that I’ll ever be pregnant, of course). I don’t know at what point there exists a “child with Down syndrome.” It is obvious, I hope, that once there is a such a child, his/her status as a human being is unquestionable. But there is a moment in time when that child is not yet present: aborting a potential child is not the same as killing an actual one. In short: is it correct to judge the decision to abort or not to abort on the basis of the well-being of an as-yet nonexisting person? In fact, my perplexity runs even deeper: is it ethically justified to have a child at all?
@ Katherine Woo #9 – regarding: “children as a rule do not become disabled”. I wonder about that, because I can think of about as many kids who have had a disability onset post birth, and it’s roughly the same number of kids I personally know with congenital birth defects. Some impairments more vicious than others – one that comes to mind is the daughter of a family friend – a 13 yr old girl falling against a van injured her head so badly she is unable to walk and talk, and has limited motor mobility. She has hellish medical costs and the emotional toll on her family and friends is heartbreaking. She has less freedom and agency than two DS kids I knew, who have grown into productive adults with humor, hobbies, and awesome memory skills. Autistic kids can become impaired around age 2 and regress emotionally and intellectually.
This is of course anecdotal – my own lived experience. But it seems a contrast to your lived experience and I hope the perspective is helpful.
Of course, there are also many kids who become disabled DURING birth.
I am married to a person who became “disabled” as a toddler as a result of meningitis. Only one example I know, not generalizable, and naturally I have no interest in moving any goal posts, whatever that means. I’m just saying that children do become disabled in childhood, and I have an example readily at hand.
Sure I can imagine that, it probably looks a lot like the peaceful Moriori of the Chatham Islands, who after arriving on the islands, subsequently devolved technologically such that when their fellow Polynesians, the Maori, found them centuries later, they were massacred, enslaved, and essentially wiped out as a distinct people.
So I guess my “objective reason” is that “…’intellect’ (in the conventional sense)” has provided the literacy, societal structure, and military prowess that allow us the luxury to debate these romantic notions.
Dawkins statement is anti-choice.
The whole point of pro-choice is that the mother is the person who decides whether or not the pregnancy will be terminated. Anything that impinges on that principle is in some sense anti-choice.
Which is not to say that informing the mother to be about medical risks, expectations about the child’s health or quality of life, etc. is not valuable (real information, not fairy tales). But as Dawkins demonstrates, “here are some things you might want to consider” all too easily morphs into “here is what you ought to do” when high status men are addressing the conveniently hypothetical pregnant woman.
“Dawkins statement is anti-choice.”
This is complete nonsense. He is unequivocally on record in favor of abortion rights. He gave his views on a specific situation where many people including myself would choose an abortion, nothing more. Literally nothing he says ever compels any competent person to follow his advice. Many of you act like he is the King of England, issuing fiats via Twitter.
This outrage that goes above and beyond merely condemning his opinion simply how blisteringly intolerant much of the left is to dissenting views.
Right. He never said you have to have an abortion if you’re pregnant with a child with Down Syndrome. He just said you’d be immoral not to.
Nothing prescriptive about that.
The difference between saying a person is anti-choice and saying a specific remark is anti-choice seems to have alluded you. That’s why you seem to think that touting Dawkins’ political anti-choice credentials refutes my analysis of his statement. It does not.
In fact, when someone says something that is clearly poorly considered, pointing out that that specific statement contradicts the general tenor of their more carefully considered positions can be a simple and effective way to convince them they have erred. Thoughtful people have been known to appreciate that sort of thing.
No, there isn’t anything “prescriptive” about that. Richard Dawkins is a public figure, not an elected official or other type of authority figure. He has every right to opine on morality.
If you take substantive issue with his views then critique them instead of subjecting him to petty tone arguments or accusations of non-existent imperious undertones.
Free tip, Latverian Diplomat: if you are going to use condescension as a tactic, try to avoid obvious intellectual blunders like confusing “allude” and “elude.”
In any case, your entire argument is that “Dawkins [sic] statement is anti-choice” boils down to a tone argument. You dislike the manner in which he offered his personal opinion, ergo he is ‘guilty’ of an even more grievous violation of liberal orthodoxy. Until you can demonstrate that he supports precluding choice on the issue of Down Syndrome pregnancies as a matter of law, or that he has any sort of authority over any woman anywhere at present, your accusation is just a shallow smear at odds with his public affirmation of choice.
I know a little bit about Downs, as I have a sibling who is severely mentally retarded (not by Downs) and who went to a special school which had a lot of Downs students.
One of the Downs boys I knew had a phenomenal memory for cars. He was only interested in cars. But he could tell you the make and model of any car on the road, which was a lot more than I could do, then or now. The Downs kids were also remarkably serene as a group. They displayed none of the usual playground bullying and competing for status that ‘normal’ kids tend to display.
But in the community at large, I rarely encounter such children now. Their presence in utero can be detected early, and I assume most parents elect to abort.
My own sibling was severely frustrated by hisher limitations, of which shehe was quite conscious. Heshe engaged in a lot of controlling and demanding behaviour, which none of the experts my parents consulted could help with much. The toll my sibling took on my parents’ lives, and on the family unit was pretty horrendous. Our father found another woman and left home, and our mother responded by becoming an alcoholic. My sibling went to a special boarding school, so family life became pretty bleak. These are examples of flow-on effects, I suppose.
The choice to terminate or not should always be the mother’s, and I expect testing in early pregnancy will get more accurate and predictive with time. But a woman has the reproductive ability to produce 20 or so children in the course of her life. Such fetuses retained are at the expense of the lives of others, which is one of the points Dawkins made..
People who proceed with a disabled fetus presumably make a rational choice on some basis or other. But I doubt many of them have any idea what they are letting themselves in for.
Katherine Woo–
You know, for someone who so obviously values her own intelligence, you seem to have a lot of trouble getting other people’s points.
Did it ever occur to you that many of us don’t want to live in a society where one never sees “an openly mentally retarded child?” In fact, I find the whole idea stomach-churning. I have a disability, myself– hemiplegic cerebral palsy. I also have a husband, two children, four grandchildren, and a PhD. I have lived an exceptionally full life in spite of my disability– because I was able to, because I chose to, but also because I was lucky enough to be born into a society where people with disabilities are not treated as pariahs. The thought of living in a society where people with disabilities are hidden away as something shameful literally sickens me.
I fully support a woman who knows she is carrying a fetus with DS getting an abortion. It is her decision. But the idea that a woman is immoral to give birth to an obviously imperfect child is horrifying. And that is the idea Dawkins presented in his tweet.
@Omar: I also have a family member with a profoundly disabling medical condition. Over the past 30-some years, I’ve also spent quite a lot of time around similarly-disabled individuals. They are not all pure, shining angels with great big smiles. They are human beings, and as you pointed out, sometimes they get frustrated and lash out. Sometimes they’re just assholes, just like everyone else.
You also pointed out the toll a profoundly disabled family member took on your whole family. It’s extremely common for marriages to crack under the strain of perpetual 24-hour care in a society with no safety net. The vast majority of the time, it’s the mother of the child–who often has quit her job because providing care for a profoundly disabled child precludes work outside the home–who’s plunged into poverty when the husband walks off. Siblings of the disabled child frequently have to sacrifice their own education (dropping out of high school to work, unable to even dream of college because the disabled sibling needs constant care, unable to pursue meaningful employment if it means any sort of travel or distance or time commitment).
Aborting a 12-week fetus is not the same as shooting a 16-year-old in the forehead. In some cases, aborting a severely disabled fetus means saving the entire family from a lifetime of poverty and exhaustion.
Yes, obviously it did “occur” to me since I was the one who raised the observation as a problematic aspect of the Korean-American community and East Asian culture in general.
If you are going to condescendingly remark that I “seem to have a lot of trouble getting other people’s points,” you should at least try to understand mine.
Katydid:
“Aborting a 12-week fetus is not the same as shooting a 16-year-old in the forehead. In some cases, aborting a severely disabled fetus means saving the entire family from a lifetime of poverty and exhaustion.”
Katydid:
“Aborting a 12-week fetus is not the same as shooting a 16-year-old in the forehead. In some cases, aborting a severely disabled fetus means saving the entire family from a lifetime of poverty and exhaustion.”
Quite so, though contrary to what many of the Catholic clergy think, it is generally not done with enthusiasm on the part of the woman who is unintentionally pregnant, or intentionally so but with.
a fetus headed to become a seriously disabled child.
It is a choice of the less undesirable of two possible outcomes. But nature does it all the time. One study of naturally aborted fetuses I heard about found that about 60%.of them were abnormal in that way, though that was hearsay from a source in medical practice.