I started blogging just under five years ago, and for the first few months, I kept marveling at my brand new toy. The record of this marveling, unfortunately, is still in the blog archives for all to see: there are entire posts that read, <i>Whoa! Check it out! Somebody responded to something I wrote!</i> and <i>d00d! Twenty thousand readers in one month! Inconceivable! This Inter-net is an amazing thing!</i> Yes, I really did hyphenate “inter-net.” It was supposed to be really funny, you see, like something from the early twentieth-century issues of <i>The Onion</i> in <i>Our Dumb Century</i>. Because whenever I want to suggest in shorthand that someone my age or older is clueless about new technologies, I refer to the “auto hyphen mobile,” after <i>Our Dumb Century</i>’s “auto-mobile,” and . . . oh, never mind.
The point is that sometimes, the internet really is an amazing thing, in which you write <a href=”http://www.michaelberube.com/index.php/weblog/wandering_back_in/”>a blog post</a> that takes issue with Peter Singer’s characterization of the capabilities of people with Down syndrome, and then find, a few weeks later, an email from Peter Singer in your inbox. Last month, Singer wrote to say he’d come across my post about the <a href=”http://www.stonybrook.edu/sb/cdconference/”>SUNY – Stony Brook Cognitive Disability conference</a>. He said he was delighted to hear that my son Jamie has a wide range of abilities, intrigued to learn that Jamie understands a range of theories about why humans eat some animals and not others, but sorry that neither Jamie nor I appreciate Woody Allen movies — though he admitted that the recent ones have been disappointing.
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 <i>wrong</i> 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 <i>expectations</i>, 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.
I wrote back a few days later. And then, after we’d exchanged another round of emails, I asked Singer if it would be all right with him if I posted my initial reply (but not his initial email) to the Inter-net. Of course, I don’t have to ask permission to post my own words, but I don’t believe in replying to someone’s private email by making a blog post out of it (even if I don’t publish the contents of the email). Singer said thanks for asking — some people would have simply gone ahead and posted his letter along with the reply. And I said, oh yes indeed, I’ve dealt with some of those people. (That’s one reason why I eventually got a blog of my own!) But I think it’s important to go public with arguments about what we can and can’t expect from people with Down syndrome, because those expectations play such a large role in debates over prenatal testing, reproductive rights, and “selective” abortion.
So, then, this was my reply:
Dear Professor Singer,
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; <i>Broadway Danny Rose</i> is a wonderful piece of work, and I’m fond of <i>Bullets Over Broadway</i> 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 <i>Interiors</i>.” 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.
The first is nitpicky, and has to do with the meaning of “we cannot expect.” You apparently take your phrase to mean “we have no reason to expect” X, any more than we can expect to win the lottery. I take it to mean — and, unfortunately, all too many people take it to mean — that a child with Down syndrome <i>will not be able</i> to do any of the things you mention. (This matters, of course, when it comes to the kind of information prospective parents receive after getting a positive result on an amniocentesis.) I think there’s all the difference in the world between saying “we cannot expect” and “we should not expect”; the former suggests absolute certainty, and the latter suggests the kind of probabilism you want to convey. Accordingly, I take the former to be falsifiable by <i>any</i> person with Down syndrome who demonstrates one of the abilities you say we <i>cannot</i> expect him or her to have. If you do want to revise the passage ever so slightly, you could always say, “there will no doubt be exceptions that prove the rule, but as a rule, we should not expect etc.”
The second is more substantial. The larger point of my argument with your claim is that we <i>cannot</i> (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 <i>do not know</i> what the range of functioning looks like, and therefore do not rightly know what to expect. <i>That</i>, 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.
The third goes to the premise of your argument. You’re looking for things people with Down syndrome can’t do, and I’m looking for things they can. We each have our reasons, of course. But I don’t accept the premise that cognitive capacity is a useful criterion for reading some people out of the human community, any more than you would accept the premise that we should grant rights to animals on the basis of whether humans think they do or don’t taste good with barbeque sauce. I stand by what I said in response to Jeff McMahan’s paper and at the end of that blog post: I hope we have learned enough from our own history to understand why it’s a bad idea to read anyone out of the human community. (This doesn’t mean, by the way, that we have to extend life support to people like Terri Schiavo against the wishes of their legal guardians. One point of my remarks about surrogates and guardians, in my response to Martha Nussbaum’s talk, was to challenge people in the disability-rights community who would strip guardians of the right to determine whether their charges would in fact want to be sustained in such fashion.) Better, I think, to add some animals to the category of rights-bearing entities without kicking any humans out. It needn’t be a zero-sum affair.
Oh yes, evidence that might change your mind if the above paragraphs won’t. The National Down Syndrome Society is full of useful information about what we can and can’t expect, and online, <a href=”http://www.altonweb.com/cs/downsyndrome/index.htm”>the Riverbend Dpwn Syndrome Parent Support Group</a> is an amazing resource for everything from research on language and math skills of people with DS. Finally, there’s the book <i>Count Us In</i> by Jason Kingsley and Mitchell Levitz (1994). The book includes, among many other things, one of Jason’s high-school essays, written when he was seventeen; the topic is his mother’s obstetrician, who in 1974 had advised the Kingsley family to institutionalize Jason because he would never grow up to have a “meaningful thought.” Of this obstetrician Jason writes:
<blockquote>He never imagined how I could write a book! I will send him a copy . . . so he’ll know. I will tell him that I play the violin, that I make relationships with other people, I make oil paintings, I play the piano, I can sing, I am competing in sports, in the drama group, that I have many friends and I have a full life.
So I want the obstetrician will never say that to any parent to have a baby with a disability any more. If you send a baby with a disability to an institution, the baby will miss all the opportunities to grow and to learn . . . and also to receive a diploma. The baby will miss relationships and love and independent living skills. . . .
I am glad that we didn’t listen to the obstetrician. . . . He will never discriminate with people with disabilities again.
And then he will be a better doctor.</blockquote>
Anecdotal evidence, sure. But good to think with, all the same. Oh, and Jason’s not the young man I saw playing the violin.
All best wishes,
Michael Bérubé
_______
*Â Just for the record, for people unfamiliar with things I’ve written on these subjects:Â my position on prenatal testing and selective abortion is <a href=”http://pandagon.blogsome.com/2007/03/10/testing-testing/”>here</a>, my position on liberalism and selective abortion and l’affaire Schiavo is <a href=”http://www.michaelberube.com/index.php/advance_directives/”>here</a> and <a href=”http://www.michaelberube.com/index.php/weblog/liberals_in_their_own_words/”>here</a>, and Janet and I weighed in on the Schiavo debate <a href=”http://www.boston.com/news/globe/ideas/articles/2005/04/03/knowing_our_minds/”>here</a>.
And since I believe in things like a woman’s right to terminate a pregnancy and a guardian’s right to withdraw life support from a charge, I think I should probably keep posting things in this vein every so often. Because as I said in my contribution to the Cognitive Disability conference, I also believe in the right of people with developmental disabilities to eat too many donuts and take a nap — even as Janet and I insist to Jamie that he can have only one soda when he gets home from school. I’m still working out just how much paternalism and liberalism and libertarianism I want in this mix, and I might as well work it on out in this medium, where I find myself with so many interlocutors. And as <a href=”http://www.butterfliesandwheels.com/notesarchive.php?id=1635″>Ophelia Benson pointed out</a> a couple of years ago, I appear to have extra extra trouble working this out when children and religion are involved. Funny how that works.
x-posted to <a href=”http://www.michaelberube.com/index.php/weblog/more_on_peter_singer_and_jamie_berube/”>my place</a>.
{ 136 comments }
Joshua W. Burton 12.01.08 at 8:58 pm
I find Peter Singer insufferable, and I feel it’s up to him to do something about it.
Peter 12.01.08 at 9:00 pm
Doesn’t Down Syndrome result in disabilities of greatly varying extent? In other words, some people with DS are indeed capable of accomplishing very little, as Singer seemed to be saying, while others can do much more.
Joshua W. Burton 12.01.08 at 9:05 pm
some people with DS are indeed capable of accomplishing very little
“To do nothing is in every man’s power.” — Samuel Johnson, Rambler #155
mds 12.01.08 at 9:14 pm
So, Professor Singer is a big fan of Woody Allen’s movies… especially the early, funny ones?
This sounds like a very generic parenting dilemma, which obviously supports your point. For that matter, it sounds like something that can be generalized to society, and its questions of autonomy, personal health care decisions, etc. Coincidence? I think not.
Michael Bérubé 12.01.08 at 9:15 pm
Doesn’t Down Syndrome result in disabilities of greatly varying extent?
That’s basically the point of the fourth paragraph of my reply to Singer — along with the proviso that early-intervention programs have widened the range still further.
Fred Blasdel 12.01.08 at 9:40 pm
When I started reading this I was expecting vitriol, but was pleasantly surprised to find an active parent who can tamp down their zeal in the interest of communicating. Bravo!
Rich Puchalsky 12.01.08 at 9:41 pm
The problem with fact-based philosophies is that philosophers are generally not very good at evaluating uncertainty. Even assuming for the sake of argument that you agree with Singer’s moral system, it needs something like the Precautionary Principle.
Witt 12.01.08 at 9:55 pm
I wish I had something more insightful to say in addition, but anyway: Thank you. This is a generous and thoughtful post.
lemuel pitkin 12.01.08 at 10:29 pm
This is a very eloquent post — I feel, in a way I can’t quite put my finger on, that it’s an instance of exactly what’s wright with liberalism. I also suspect that the way it manages to make its argument uncompromisingly but without the usual argument -as-warfare debating stance might be connected to Michael’s relation to the topic — in my experience, people are not only more informed and interesting, but much more reasonable, when they’re talking about things they have first-hand knowledge of.
I wish, tho, that Micahel hadn’t made that concession at 5. The whole point, it seems to me, si taht there just isn’t a fact about the world that we can label “extent of disabilities of person with Down syndrome,” not even as a range or distribution.
will 12.01.08 at 10:52 pm
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.
Excellent post. I really like above paragraph.
Sometimes that recalibration is so difficult on the parents. Just like parents of children without autism or Down syndrome, it is easy to see a ceiling for your child. It is such a fine line between providing opportunities for your child to exceed expectations and putting your child in situations that are not healthy.
I also enjoyed your comments about dehumanizing your child. Compassion without patronizing is not always easy for people. Even those who come to your child with love can slip into the mode of diminished expectations, much in the same way that women were (are) treated.
Michael Bérubé 12.01.08 at 10:55 pm
I wish, tho, that Michael hadn’t made that concession at 5.
Oh, now that’s interesting — I misread “disabilities” as “abilities,” and thought I was reinforcing the point that people with Down syndrome have a wide range of abilities. Funny how that works, too.
CK Dexter 12.01.08 at 11:00 pm
“The whole point, it seems to me, si taht there just isn’t a fact about the world that we can label ‘extent of disabilities of person with Down syndrome,’ not even as a range or distribution.”
If this were true, would we be able to identify or recognize persons belonging to the class “persons with Down syndrome”?
Further, if there were no point in generalizing (in the rather minimal way Singer has) about the limitations of (and our corresponding expectations toward) members belonging to that class, would there be a point in diagnosing them as such–other than to attend to the specific needs of such persons, the recognition of which requires some comparable form of generalization about expected, if not certain, limitations?
John Protevi 12.01.08 at 11:08 pm
(This doesn’t mean, by the way, that we have to extend life support to people like Terri Schiavo against the wishes of their legal guardians. One point of my remarks about surrogates and guardians, in my response to Martha Nussbaum’s talk, was to challenge people in the disability-rights community who would strip guardians of the right to determine whether their charges would in fact want to be sustained in such fashion.)
Hi Michael, thank you for this post, which is excellent as usual. I would wish to quibble with the above, however, as Michael Schiavo went to Judge Greer to have him rule as to Terri Schiavo’s wishes. So he, Michael Schiavo, never exercised his guardian rights, which have to meet a “best interest” standard. Instead he asked the court to enforce his wife’s rights. So it wasn’t a matter of extending life support to Terri Schiavo against Michael Schiavo’s wishes or against his judgment as what his wife would have wanted. It was a matter of not extending life support to Terri Schiavo against *her* wishes as recognized by Judge Greer’s court after hearing testimony and weighing evidence.
Kathleen 12.01.08 at 11:29 pm
Michael, I am so glad you are periodically popping up writing about this stuff!
To answer Dexter’s question (if I may) — actually, Downs syndrome is unusual in that it is relatively common. The only reason we “recognize” Downs right away is because we know what we are looking for. There are many other genetic syndromes, far more infrequent in the human population than Downs, where the range of effects makes the “mild” end literally unrecognizable because only the severe end makes it into medical textbooks . I know this because my sister was an adult before being diagnosed with one of them; she was on the “mild” end of the scale and thus was for many years “unrecognized”.
Re-cognition depends heavily on what one expects to see and what one has seen, is the point.
My experience via my sister suggests to me that we’d all be better off making room at “both ends” — both human boundlessness and human limitations — for everybody.
One of the professional (rather than personal) contexts in which I think about this a great deal: I’m a college professor and I have lots of students who are intellectually brilliant and lots of students who are slightly odd, or confused, or baffled by academic work in ways that I attempt to address as best I can, but never thoroughly enough. I don’t think even the book-smartest of my students is well-served by a system that sticks everyone along a set of points on a single scale, and I’m certain it’s not a great deal for the baffled ones.
If we had a more generous and expansive world of possibilities for people, the classroom evaluations I have to make would matter less and would be less painful — I could reward excellence on that one scale happily, while knowing very well it was just a single kind of excellence among many kinds that would bring rewards. The world doesn’t really work that way right now; there are just a few kinds of excellence that bring rewards and measuring everyone along those few sticks produces terrible harms.
Anderson 12.01.08 at 11:47 pm
though he admitted that the recent ones have been disappointing
On that evidence, I believe that Woody Allen would favor Singer’s post-birth abortion, due to the low expectations of Singer’s aesthetic sensibilities.
Dhananjay Jagannathan 12.02.08 at 12:26 am
@CK Dexter, ‘If this were true, would we be able to identify or recognize persons belonging to the class “persons with Down syndromeâ€?… ‘
To be more direct than Kathleen, the answer is a karyotype. Down syndrome is simply trisomy 21. If we suspect someone has DS, we do genetic testing, and they either do or they don’t (except cases of mosaicism or complicated kinds of non-disjunction, but the point holds).
The effects of DS vary immensely as Professor Bérubé points out, and so far as we can, we should attend to each individual’s capabilities while still considering the typical patterns of biological consequences. Doctors bring the latter kind of expertise to the table, but it’s the job of parents, teachers, occupational therapists, etc. who have prolonged contact with affected people to highlight the former – their particular areas of excellence and deficit. But this of course is much the same approach we should take with all children.
laura 12.02.08 at 12:33 am
Singer writes, ““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.”
I have a lot of problems with these two sentences without even getting mixed up with Woody Allen. Kids with disabilities (why limit it to Down syndrome?) may have a harder time reaching certain milestones than other kids. Early intervention has helped to improve our expectations and understanding of a whole range of disabilities from Downs to autism. But it’s that first sentence that annoys me, while it’s the second sentence that gets to you.
A kid’s cognitive/physical/neurological ability has no bearing on the parent-child relationship. The bond is the same. There are always some achievements to cheer about or some inside jokes or goals to shoot for. Always. I’ve talked to parents with profoundly disabled children and they have deep connections to their kids, in some ways even more intense that the relationship of a parent to a “normal” kid.
Righteous Bubba 12.02.08 at 12:45 am
A kid’s cognitive/physical/neurological ability has no bearing on the parent-child relationship.
I wish this was true.
Chris Borthwick 12.02.08 at 3:08 am
The issue here that Peter Singer has always shirked is uncertainty. His mode of thought is classically syllogistic, and it functions only if the terms are of the form “All A are B”. I wrote a longer article on this, which Peter published in the ethics journal he ran at the time – he’s nothing if not courteous.
If the world was as Peter assumes it to be, then I would agree with Peter’s recommendations; as I don’t, I don’t; and my argument with Peter is that as a philosopher he does not see that he himself has any responsibility to acquaint himself with facts. If all men are mortal, then Socrates is mortal; whether all men are in fact mortal is someone else’s concern.
For another version of this argument, see Anne McDonald’s article at http://seattlepi.nwsource.com/opinion/319702_noangel17.html.
dilbert dogbert 12.02.08 at 4:18 am
Michael,
Thanks
Dilbert, Parent of an Autisitic son.
Michael Turner 12.02.08 at 4:39 am
One of the better posts I’ve seen on Crooked Timber (OK, I’m a newbie here.) Even the typo in “the Riverbend Dpwn Syndrome Parent Support Group” suggests “to dpwn” as a verb meaning, “to be the butt of a ‘gotcha’, or to be floored by an unexpected achievement, from someone with Down Syndrome”.
lemuel pitkin 12.02.08 at 5:27 am
Dexter @ 12-
Down Syndrome is a well-defined condition that involves a specific, clearly identified genetic abnormality, with more or less determinate biological effects. Abilities are something quite different — they are fundamentally indeterminate because they are the result of social choices we are still making. “Disabilities of a person with Down syndrome” is, I’m arguing, in the same conceptual category as, and no more determined by biology than, “philosophical conclusions about the humanity of people with Down syndrome.”
rickismom 12.02.08 at 6:16 am
I would like to point out tp you (and not after 125 comments on the original article)- In your article on pre-natal testing, you mention that the chassidim do pre-natal testing for Tay-Sachs. I would like to point out, that this testing is testing of potential COUPLES before marriage (to avoid marriages where both partners have the recessive gene), and NOT for abortion or contraceptive purposes. Unfortunately it is not 100% wide-spread. Also done is testing for other recessive genes, such as that for Cystic Fibrosis. But this is done before marriage.
seth edenbaum 12.02.08 at 6:21 am
“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.â€
In other words we can not expect a child with Down’s syndrome to do everything we might want to do, or chat with us about everything we might want to chat about. By this logic considering how much most people bore me, I’d have to argue for euthanasia for about 75% of the population. But then it’s not about, me, or the parents, it’s about the child.
Law is a necessary but vulgarized oversimplified categorization of experience. There’s something to be said for the state having limited rights regarding a fetus in the womb and the parents having limited rights regarding the baby once it’s born. If you want to argue that such a line is artificial, I won’t disagree. Law is artificial. As with abortion it’s not a matter of answering questions regarding the definition of human life, but of answering questions only about when the state should be allowed to answer such questions for us
#7 “The problem with fact-based philosophies is that philosophers are generally not very good at evaluating uncertainty”
The problem with fact based philosophies is that those who hold to them tend not to accept that as humans they begin not with facts but perceptions about facts. Fact based philosophies always fall short. For a good, critical but sympathetic, I’d even say empathetic discussion of the strangeness of Peter Singer, read Daniel Mendelsohn’s review of Singer’s “Pushing Time Away: My Grandfather and the Tragedy of Jewish Vienna”
Lizzie 12.02.08 at 6:22 am
I appreciate the compassion and complexity brought to this debate, and I hope that I’m not appearing to lessen it by asking the following question. However I believe it matters, deeply, if we are to have a truly honest debate:
Do we expect society to do whatever is needed to encourage a disabled/ genetically different child to live up to his or her potential? Especially if this child is unlikely to grow up to be an adult who becomes self-sufficient?
I ask the question because dedicating the vast resources often needed to develop a disabled child to his or her potential generally means that those resources will be taken from someone else. I believe this truth is often forgotten when we focus singularly on the notion of every child living up to their potential. Yet this tension is a tragic dimension of the unequal distribution of , and struggle for, resources on planet earth. To oversimplify, when a parent of a disabled child advocates that their child deserves daily tutoring, that means another 5 other children are not getting weekly tutoring. We should be deliberate in our assessment of trade-offs when we aim to develop everyone’s potential, regardless of starting point.
Tracy W 12.02.08 at 8:56 am
lemuel pitkin – so you are making the distinction between genotype (what genes we have) and phenotype (the expression of those genes in the environment)?
daelm 12.02.08 at 11:21 am
has no-one noticed that Peter Singer fulfills the classic criteria for Asperger’s syndrome / High-functional autism?
d
Mother 12.02.08 at 11:49 am
My fifth child was diagnosed with down syndrome at birth. I did not have diagnostic testing by choice. My choice, my child. I cannot speak for another’s child. We were blessed in that there have been no health issues, just a beautiful daughter loved by many. One of the first things I did after her birth was go on internet… not to the medical sites but to the websites dedicated to children born with the extra. It was a great comfort to me to read those websites and visit those lives after nursing in the early hours of the morning. I did not sleep, but I found peace. My daughter will have her strengths and weaknesses like my other children. The weaknesses will be more evident. But she also has great potential. This is evidenced by those who have chronicled their children’s daily events and milestones. Life is lived. That is perhaps the greatest gift that parents of children with down syndrome have given to those who are just beginning their journey. Thank you to those write about their beautiful children, educating others in the process.
Michael Turner 12.02.08 at 1:13 pm
Singer: “We cannot expect a child with Down syndrome . . . . to learn a foreign language . . .”
Where’s he getting that from? I would have started with the assumption that, in learning other languages, the kid would have deficits and/or delays commensurate with those for the first language.
I went and searched the inter-nets, on “Down syndrome” and “bilingual.” Research is mostly recent and thin, but pretty much what I expected — a Down syndrome kid in a bilingual household will pick up both languages at more or less the same rate, with no greater apparent effort than learning one language, and some seem to do OK with languages in other typical learning/acquisition contexts.
Time was (maybe still is), multilingual parents of Down syndrome kids were counseled to stick with one language, to reduce the burden on the kid. There doesn’t seem to be any good reason to do that. Nor does there seem to be any reason to deny them second language instruction in school, if they want it. This looks like yet another area where not much is known, because not much was tried, because too much was assumed and too little was expected.
One of my younger brothers, at age 4, when some kids are so loquacious you wish they’d STFU, knew exactly two words: “no” and “moon.” And the one noun he had under his belt embodied fewer semantic distinctions than you’d hope — if the sun turned into a directly viewable disk behind clouds, that was also “moon.” I suppose if he’d had typical Down physiognomy, the process of leaving him behind would have started, and might not have stopped. He has, of course, ended up being one of the more articulate ones among my siblings, and please let’s not talk about how much more common sense he has than I do. I probably should have made him my investment counselor long ago.
Now, with Down syndrome, I suppose there’s a lot more to it than some learning delays and looking different from the rest of us. I’m no expert. But it’s interesting that it has turned into something of a frontier in ed psych, and we can’t be too sure where the ultimate limits are. I’ve long been intrigued by the hypothesis that, in some ways, Down syndrome is the expression of very recessive Neanderthal traits, and also by the hypothesis that homo sapiens wiped out the Neanderthals because the Neanderthals had the disadvantage of genetic traits that made them much nicer and more peaceful people than we are.
lemuel pitkin 12.02.08 at 1:54 pm
I’ve long been intrigued by the hypothesis that, in some ways, Down syndrome is the expression of very recessive Neanderthal traits,
Wow, Michael Turner is as insightful about Down Syndrome as he is about economics.
lemuel pitkin 12.02.08 at 1:58 pm
24-
No, I’m trying to distinguish phenotypes whose expression depends on our beliefs and collective choices. That’s where the fundamental indeterminacy comes from. You could describe the range of outcomes for kids who were raised in various ways historically, but precisely because we know that range, the experience of kids today will be different.
Michael Turner 12.02.08 at 3:24 pm
Oh, lemuel, if you must drag any previous battle onto a new and unrelated thread, at least take my advice about looking things up. “Intrigued by” is not the same as “convinced by”; one can even continue to be “intrigued by” a theory even if you’ve come to think it’s wrong. Schumpeter had any number of reasons why he thought Marx wrong, but still found Marxism fascinating.
Abilities . . . are fundamentally indeterminate because they are the result of social choices we are still making.
If some race of capricious superbeings invaded Earth and told us they’d hang around for a couple centuries and kill anybody who couldn’t juggle 5 balls for at least 10 seconds, and gave us all month to get up to snuff, we’d have an interesting problem if that ability turned out to be genetically determined. After not very long (perhaps a few generations) not being able to juggle 5 balls for at least 10 seconds might be considered caused by a “genetic abnormality,” right? But then, any such categorization would be the result of a “social choices” we were making, wouldn’t it?
It’s a stretch, of course, but much of human evolution seems to have been one stretch after another. One needn’t hypothesize capricious extraterrestrials when, say, rapid climate change and the need to occupy and adapt to new ecosystems might be enough. You don’t need cro-magnons with a concept of “genetic abnormality.” Just cro-magnons with a concept of “weakling”.
EK Buddenhagen 12.02.08 at 5:00 pm
In the 1980s I was the senior social worker at a residence — a bunch of group homes – for adults with developmental disabilities, mainly mental retardation. The people who lived there grew up before there was much in the way of early intervention. Some had been rescued, if that’s the right word, from state institutions. This was a progressive place, however, and had not given up on possibilities. People went to work, and not all at sheltered workshops; they went out for dinner, to movies, and so forth.
Working there was not my first choice, but I very much needed a job. I am forever grateful I got it. While there were a number of people with DS, I just wanted to recount the story of one, not so much because he was unusual as because I lived it with him.
Jim was a man in his twenties who went to a sheltered workshop. One day he came into my office and insisted that he could do more than what they did at a sheltered workshop. His speech was hard to understand, but his pantomime wasn’t. He made the point that if people TOLD him what to do, he couldn’t always understand what to do, but if they SHOWED him, he could, and if people SHOWED him what to do, he could do a lot more than sealing plastic bags or whatever he was doing.
So we took him to be tested at a place that usually worked with “higher functioning” people — many were people with psychiatric difficulties or minimal brain dysfunction — and sure enough, they said he would be able to work in an independent setting doing janitorial and cleaning work in someplace like a hotel or an office building. We enrolled him in the training program.
He was accompanied on a public bus to and from the suburbs to the downtown training site daily. He kept insisting he didn’t need to have anyone take him. Well, of course no one was about to let him ride the bus alone.
One day, I was home really feeling sick with strep throat. I got a call. He was missing. He wasn’t at work when the person who’d gone to get him arrived. And he wasn’t at home. I dragged myself into my clothes and was about to leave for the residence when the director called me again. Jim had just come strolling onto the campus with a big smile on his face. He’d not only gotten on one right bus, but two, since he had to transfer. And he had to know the right numbers of the buses.
So he ended up taking the bus by himself, and other residents did, too, after, of course, a training program: there’s a lot of bureaucracy and fear of suits in the world of social services. You have to prove you KNOW the person can do what he’s doing.
The sister of another resident was a photographer for the local paper. She took photos of Jim riding the bus for the paper. In one, he was standing at the bus stop coolly smoking a cigarette, which of course got his family upset though in spite of staff efforts he’d been doing it for quite a while. In another, he sat in the the bus, arms draped over the back of the seat, looking totally in command.
Aside from the smoking, the only other consequence of his traveling solo was that he started to put on weight, a real problem for some people with DS, because there was a pizza restaurant at the transfer point, and he’d made friends with the people who worked there who then regularly gave him free pizza.
He ended up working independently at a hotel and at a long-term care facility. I don’t know what’s happened since I left.
But knowing people with DS and a bunch of other syndromes and what have you, I can attest to the fact that my life was enriched in many ways. Not just because they can “do normal things” but because they can surprise you in such quirky ways and because experience with people with developmental disabilities enlarges how you see the world.
That said, there are people with absolutely dreadful problems who exist in near vegetative states for their whole lives. These people do present all kinds of ethical dilemmas. With less disabled people, if a test during pregnancy reveals problems, the mother’s abilities and resources, emotional as well as material, should have a big role in the decision whether to keep or abort a fetus. In my jobs with developmentally disabled people, I saw families destroyed by the need to care for seriously disabled children and others that flourished.
dWj 12.02.08 at 6:53 pm
“To have a child with Down syndrome is to have a very different experience from having a normal child.”
Perhaps this was meant uncharitably, but it reminded me of a comment (related by a friend of mine with cerebral palsy) that having a child with a disability of some sort (by which I mean, naturally, the sort of disability that is usually labeled such) is like having a bunch of friends who go to Italy, and who talk about how wonderful Italy is, and getting on a plane to Italy, and finding oneself in Amsterdam. Amsterdam is a perfectly fine place to visit, with nice museums and cafes and the like, but if one has planned for Roman ruins and Mediterranean beach trips, it very much requires a change in plans.
This friend of mine is a superb writer, as it happens. Given the choice, I believe that I’d prefer a child with her cognitive abilities and an inability to walk to a “normal” child, though I believe more forcefully that I’m probably not good at predicting how I’d feel in that sort of hypothetical. I’ve read in a number of sources that human cognitive ability seems in practice to be used more for justifying previously held beliefs than for forming new ones; I hope that, whatever sets of abilities and disabilities my child happened to have, that I’d come to believe that that was my first choice.
functional 12.02.08 at 6:55 pm
But I don’t accept the premise that cognitive capacity is a useful criterion for reading some people out of the human community, any more than you would accept the premise that we should grant rights to animals on the basis of whether humans think they do or don’t taste good with barbeque sauce.
But is cognitive capacity a useful criterion for deciding whether some living things are “people” in the first place? Careful now, because cognitive capacity is usually the first thing when one asks pro-choicers why fetuses aren’t “persons” yet.
Michael Bérubé 12.02.08 at 7:01 pm
OK, I have to catch a plane in the next few minutes, but quickly: John @ 13 and rickismom @ 23, thanks for the corrections/ clarifications.
Lizzie @ 25:
Do we expect society to do whatever is needed to encourage a disabled/ genetically different child to live up to his or her potential? Especially if this child is unlikely to grow up to be an adult who becomes self-sufficient?
I ask the question because dedicating the vast resources often needed to develop a disabled child to his or her potential generally means that those resources will be taken from someone else.
OK, I hear you, but as I was saying last night after my talk (which touched on these very subjects!), part of the problem of setting this up in a utilitarian cost / benefit kind of way is that there’s always that hypothetical out-of-control trolley that’s going to hit either Einstein or twelve really old people. If you start from the presumption of scarcity and/or the zero-sum game, then you’re going to produce this kind of problem, where the disabled kids are made to appear as if they’re leeching off everyone else. When, in fact, there are many kids with disabilities (including Down syndrome!) who can grow up to lead independent lives, and many nondisabled kids who are just hellions and behavior problems in the classroom. I do have a more complete answer to this, though, and don’t mean to blow off the question — since when it comes to mental health/ mental retardation resources in the US, scarcity is indeed the general rule. But I’ll come back to this a bit later.
Kathleen 12.02.08 at 7:23 pm
So Lizzie, would I be correct in assuming that for you, the ideal-typical member of any society will end up being revenue-neutral: that is, sure, we all invest in a sewage system, public education, road safety, old-age pension, health care, whatever, so that each citizen has the best chance of putting back in what they “got out” of the system, such that when Mr. X dies at the age of 80 (no expensive heroics at the end, him being a good citizen and all) one could calculate the costs and benefits of his life and come out at “0”?
There are many things wrong with that sort of ostensibly common-sense approach to society and social being, and the worst of them aren’t ethical. That idea of society and social being is silly; the world doesn’t work that way and to set out to design policy on such a premise produces predictably silly outcomes. Did you mean something else?
JAM 12.02.08 at 7:38 pm
Michael,
As a geneticist who works with animals, I think you’re taking Singer much too seriously by responding to him in such a reasoned, nuanced, and logical way.
Singer’s indiscriminate employment of false bifurcations, as he does with people with DS, are the basis for his major political position on animal “rights.”
For just a taste, consider that I use hundreds of mice per year to do experiments that Singer (and the rest of the animal-rights movement) promotes as “nonanimal alternatives.” This is even more incoherent and misleading than the government’s position.
The bottom line is that Singer’s positions on animal suffering depend entirely on whether he perceives that such suffering can easily be leveraged to demonize other people. That’s pretty amazing coming from someone who is paid to think about ethics.
Mother 12.02.08 at 8:22 pm
– 25
Many parents have had to fight through the years for the education of their child because some do not believe that dedicating extra resources for children that are “disabled/genetically different” is worthwhile. Public education is considered a public good. Many would elect not to pay school taxes for they do not use the schools. Some people don’t drive on highways either. What would you suggest as an alternative? The aim of public education is to educate children. My child with down syndrome is a child first. Although you may see her as “genetically different”, to most she is simply a child. And is just as deserving of an education as my other children with 46 chromosomes.
Carol 12.02.08 at 8:29 pm
To expect or not expect anything of a Downs’ Syndrome person is like expecting or not expecting something from a non-DS person. They are what they are and they accomplish what they can. Our job as parents is not to “expcet” but to facilitate and assist in the blossoming of our children.
If I had the right to expect things of my children, they would both the botanists now, instead of (sob!) artists.
eRobin 12.02.08 at 9:28 pm
I can’t add anything of substance to the discussion but I want to say that this post and your letter are beautifully constructed, inspiring, challenging and a sheer joy to read. So, thanks very much for that.
James F. Elliott 12.02.08 at 9:51 pm
Do we expect society to do whatever is needed to encourage a disabled/ genetically different child to live up to his or her potential? Especially if this child is unlikely to grow up to be an adult who becomes self-sufficient?
Short answer: Yes.
Here in California, we have an entire law — The Lanterman Act — dedicated to this very premise. These people have the same rights we all do. The “trade offs” are actually a bit of a false dichotomy. Many of my clients — teenagers and young adults with intellectual and other disabilities — transition from school to part-time or even full-time employment. Sure, in our county that work cannot be self-sufficient — who the hell can live independently on minimum wage in Santa Clara, I ask you? — but it allows for contribution to society economically (to say nothing of the benefits these people bring in and of themselves).
The services for people with intellectual, developmental, and genetic disabilities are not cheap. But the more that is invested in them on the front-end, in early intervention and education, the less cost there will be to lifetime-use services. One thing we must recall is that the historical data on such people’s “capacities” is skewed: the assumption of their limitations was made, and so no effort was given to actually see what those limits really are.
This is no different a rights matter than, say, the education of minority children. All children deserve the chance to realize all they are capable of.
EK Buddenhagen 12.03.08 at 1:25 am
Lizzie wrote:
“I ask the question because dedicating the vast resources often needed to develop a disabled child to his or her potential generally means that those resources will be taken from someone else. I believe this truth is often forgotten when we focus singularly on the notion of every child living up to their potential. Yet this tension is a tragic dimension of the unequal distribution of , and struggle for, resources on planet earth. To oversimplify, when a parent of a disabled child advocates that their child deserves daily tutoring, that means another 5 other children are not getting weekly tutoring. We should be deliberate in our assessment of trade-offs when we aim to develop everyone’s potential, regardless of starting point.”
This is a very important question — not only because of the issue of dividing up a pretty small pie, but because we have to look with a clear head at what’s really good for kids with DS or other developmental disabilities and what’s good for everyone else. I think the disability rights movement for people who have developmental disabilities went off course. Having seen, in my career, all kinds of people with dds, I would advocate for thorough and ongoing evaluation. But then I would advocate for a realistic approach to education and to life. In my experience, people with dds often had parents who could not accept their problems, or who could but could not get over the situation and pushed too hard in the wrong direction. Rather than tutoring five days a week, or whatever, we need to expand the non-dd world’s view of a meaningful life. The middle and upper middle classes in the US are such a competitive, over-achieving element in society that it’s hard for them to realize that academic achievement isn’t everything. Currently I live in Mexico in a very non-US setting. Here the schools teach responsibility to family and community. They teach that good grades mean not so much that you can make money, etc., for yourself, but that you can take better care of your family and your community. I don’t want to idealize because Mexican public schools certainly don’t deserve to be idealized but rather to point out that in this context, kids with DD can be educated to achieve a lot. Most of the moderately and mildly dd people I came in contact with could understand responsibility as it applied to them. A classroom setting in which kids of all abilities had a home room together and then were sorted according to their needs could encompass everyone. Some kids might go to home ec, or to shop, or to dressing, or to history or to music. And they would all come together for sharing, perhaps, or for class business or for whatever. But in my experience, the demands often placed on dd kids and on their mainstream classes and teachers could drive them all nuts.
When I worked in Missouri many years ago, even people with profound retardation had to have habilitation plans, had to make progress that was measurable in ridiculous terms: directed eye contact 6 out of 10 times, whatever.
Much more important is for mainstream folks to question their values: high academic achievers haven’t yet saved the world. A broader view of education is in order.
mo 12.03.08 at 4:02 am
–Much more important is for mainstream folks to question their values: high academic achievers haven’t yet saved the world.
which should lead us to realize we can’t predict the future, can’t predict who does what, can’t centrally plan away our problems. Weshould be treading very lightly on deciding who lives and who dies, and instead, view all humans as having value and worth Life is precious.
Father of Tommy 12.03.08 at 4:02 am
Why should our expectations of others be a criterion for moral judgment as to their rights? Is it that our expectations are some kind of reliable indicator of what others are capable of? As your examples show, that is likely false, particularly in instances where theorizers are trying to come up with reasons for killing other human beings.
Why don’t we actually look at what they are capable of, rather than sit in our offices and seminar rooms talking about what we expect of them?
But then why should what they are actually capable of be a criterion for moral judgment as to their rights? Do we recognize disabilities? To recognize a disability tacitly recognizes that an individual of a certain kind is suffering. It is not a disability for a worm not to be able to see. But if one recognizes the suffering of another human being, why then not do what one can to alleviate the suffering, rather than destroy the sufferer?
ozma 12.03.08 at 4:23 am
Oh, I love you and I got all choked up reading this. Why?–just because you said not to leave some humans out of the human community. Holy crap. I’ve been dying to hear those words. Humans! No conditions for putting them in and caring for them. Because they are humans. Why the hell not?
I.e., it’s not the sweetness of hearing your stories about Jaimie, who sounds like a very cool kid. It’s that I feel wearily beaten down in an academic climate where this is even an argument, a view, a debate. Reading this post, I’m realizing that’s it’s just started to get to me.
I actually managed to convince someone a month or so ago (of varying versions of the Singer stripe) that maybe we could have an extended circle for those we leave in the human community. I did this by bringing up the fact that her argument entailed we’d have to immediately kill all the people on death row. Somehow, she could put them in the human community and realized that she could find more room for more kinds of humans in her circle of moral standing. Perhaps the severely handicapped? I don’t quite recall the turn in the debate that got us to that point. But it WAS something about resources. Resources. Are the non-productive handicapped using up too much of these? Yes, we did have that discussion. Good God.
When I have these debates, I realize that I probably don’t belong in academia. For example, lately, I’ve wanted to say something about love to them. Love! For all humankind!
Too much competition these days for a job at Starbucks. It’s nice you can use rational argument still. You DO belong in academia.
seth edenbaum 12.03.08 at 5:07 am
In the old days, those who counted themselves among the enlightened used to argue back and forth as to whether greed and shallow self-interest were something curable or a permanent weakness of the species. That debate marked the distinction between liberals and conservatives, optimists and pessimists. Utilitarianism is the result of pessimists not wanting to feel depressed anymore. Limited Resources? In the center of the richest empire in the history of civilization? And 700 billion… for what now?
This post parallels the argument over Larry Summers.
To understand greed should not be to approve of it. In a world of plenty there is not defense for jettisoning the weak. We do not send our elders out to sea on floating chunks of ice. The philosophical argument for individualism is a defense of the ideology of the incurious.
Utilitarianism carries a deep strain of anti-democratic logic. Why is that fact so consistently ignored?
Kathleen 12.03.08 at 5:32 am
EK Buddenhagen — I don’t know if it’s because your background is (apparently) in education, but your vision of what would be better for people with developmental disabilities seems pretty schoolroom-focused when the problem is located in society at large. Sure, it would be great if people relaxed about not everyone nailing a 1600 on the SATs (or whatever the scoring system is these days) or scoring highly in some other, parallel domain based on the testing model. But just saying, hey, relax, take a load off in the schoolroom is NOT going to change what the larger society looks like: young people must excel at one of a limited array of things, many of which are decided in school (including sports, music, drama, & artistic talents) or their life chances are really pretty limited and impoverished (literally and figuratively). Perhaps wrongly, I read a disturbing degree of acceptance of that situation creeping into your solution: that the answer for people with developmental disabilities is lowered expectations yay! And spending a lot quality time with their families rather than aspiring to fully public lives. You know, that really is not cool at all. The whole sphere of public life should include people with developmental disabilities participating in whole, rich, civically recognized ways — not learning from school onward that their role in life will be to watch soaps with grandma and play with the cat.
djw 12.03.08 at 6:06 am
This is a lovely and moving post, Michael; thank you.
Michael Turner 12.03.08 at 6:31 am
I favor cost-benefit analysis on these issues, but not because of some need to calibrate the system according to weird ideal of citizens being revenue-neutral (on average.) Rather, you need to look at costs and benefits under daylight because what happens when they aren’t noticed and talked about can be bad. For all we know, one of the root causes for historical high mortality rates among those with Down syndrome was that benign neglect in the institutions where they were warehoused was actually cheaper on the whole than developing these people to their potential and enabling them to a “burden on society” for longer. It might still be cheaper, overall. But that’s not the point, is it?
This will seem like a change of subject, but bear with me:
Some recent research (by Kip Viscusi) that AFAIK nobody has proven wrong indicates that smokers save everybody else money. Yes, smokers incur higher health care costs throughout their lives, but it seems this is more than made up for by the fact that they tend to die younger, of maladies that tend to kill people pretty fast, and hence smokers are less of a burden overall on pension and medical benefits. On top of the taxes smokers pay (borne unprogressively by those with lower incomes, who also tend to smoke more) nonsmokers are basically getting slightly subsidized by smokers.
Now, this has been howled at, it’s been called propaganda in favor of Big Tobacco (and in fact Viscusi’s research was at least partly paid for by Big Tobacco), but if it’s true anyway, it’s better that we know, isn’t it? It would definitely be better if we’d found out from a government research study, which makes me wonder: why didn’t we? Is it because some people in charge of these things quietly shrugged and said, “Let’s not get into it — it looks like it’s cheaper this way, so let’s not upset the apple cart”?
I’d rather live in a society where there’s universal coverage for smoking cessation, even if it means taxes are higher (preferably on richer people) to cover both those treatment programs and the added costs of more people living longer and being healthier. In general, I think we’d be better off categorizing addictive tendencies as a kind of disability, deserving of treatment if not cure, deserving of prevention efforts, even if it costs us all a little more. But if we don’t know the costs and benefits of the status quo, corrupt policy can grow in the dark.
Now, to get back to the question of the developmentally disabled and support policies: could it be that decades (or centuries) of benign neglect were economically driven, but by a “hand” so “invisible” that we couldn’t even imagine that the cause was fundamentally economic? Market behavior isn’t entirely missing even in government-run programs, though we often make the mistake of assuming that it is (conservatives and Libertarians being especially prone to that). And without openly discussed cost-benefit analyses, aren’t we tacitly and negligently inviting “invisible hand” behavior into ethical realms where we want all hands to be as visible as possible?
seth edenbaum 12.03.08 at 6:35 am
“This post parallels the argument… ”
The thread, not the post.
But there are a few people here who are less generous in their response to #25 than Michael Berube is. And though I agree with him, I agree with them more.
I should have found a better way to say that.
Julian 12.03.08 at 7:42 am
I don’t want to clutter up the comments page for your original post about Singer after discussion has ceased, but it almost seems as though you’re simply saying that we can’t define ethical views regarding life with any rationality whatsoever until we look back at them years later in hindsight. By that token, since our concern for life should be so profound, should we be taking steps (such as future medical research) to prevent the spontaneous abortion of embryos and fertilized eggs that takes place without human intervention? How do we know that future enlightened generations will not be looking back and marveling at our brutality in permitting a holocaust of spontaneous abortions to occur?
Dave 12.03.08 at 8:39 am
“a “hand†so “invisible†that we couldn’t even imagine that the cause was fundamentally economic”…
I should have thought the inverse – it’s only very recently that society has come to agree [and not without reservations, evidently], that it is worth “”wasting”” money on the quality of life of people with disabilities in significant quantities. Nothing hidden, secret or surprising about it, just good ol’ human callousness. They used to drown kittens too.
Of course the really BIG question is whether, having poked our heads up into the clear air of post-scarcity humanitarianism and justice by standing on a big pile of oil, we can keep our heads up in the future, or see ourselves sink back into the morass of pragmatic hard choices we came from. Here’s hoping for option 1, but really, who knows?
Michael Turner 12.03.08 at 8:41 am
Aside from the smoking, the only other consequence of his traveling solo was that he started to put on weight, a real problem for some people with DS, because there was a pizza restaurant at the transfer point, and he’d made friends with the people who worked there who then regularly gave him free pizza.
I’ve started wondering if “village idiot” might have been somewhat a term of endearment, originally. Free pizza is interesting anecdotal evidence. I’ve also started wondering if the role of “village idiot”, however bad it might have been, was still a lot better by most measures than being an in-patient, during most of the history of institutionalization of the mentally disabled. That’s not to suggest going back to that, rather that there might have been a dip in the fortunes of the mentally disabled, with institutionalization accounting for much of the sag.
I’ve been trying to dig up some social history on the pre-institutional era. There’s not a lot, so far, and what there is seems very lore-ish. The formal history of mental retardation seems to start at some point not long before institutionalization, which I suppose facilitated comparison, research and accurate record keeping, at least, whatever else might be said against it. One author of the history of mental retardation in America says that degree of mental disability was an overstated factor, and economic vulnerability a bigger factor than people realize. There was a process of differentiation of institutions: debtors’ prisons, poorhouses, ordinary prisons, orphanages. Institutions for the mentally retarded emerged late in that group.
In Michael Berube’s book, you can read that those with Down syndrome had a life expectancy of 10 years before Dr. Down showed up. (Down was able to double this figure, among other accomplishments.) That shocked me. If “10 years” figure is true, it might have been a point to which their life expectancy had actually dropped. Prior to institutionalization, the mentally disabled would have had more opportunities to be socially situated in certain ways, and perhaps they were able to develop a lot through exposure to daily life (even if it was just daily in a small village world) and become functional and useful, or somehow get by. But being one of 10 or 15 “idiots” living in one room in a big building sequestered from society, with staff operating under the assumption that they were never going anywhere — well, what would the life expectancy of most children have been under such circumstances? Some of those institutions might have started with the best of intentions, only to turn into overwhelmed dumping grounds. Scientific inquirers following later might have jumped to conclusions based on what they saw at that point, rather than on what looking what at a socially situated life might have revealed.
Katherine 12.03.08 at 10:34 am
I have found this thread amazing, and touching, and then amazing again.
Not to make things about me, me, me, but since I had a baby recently(ish) it is not so many months ago that my husband and I had to have the “what would we do if…” conversation. We found a blurry line that we mutually agreed upon – Down Syndrome falling on the “wouldn’t keep it” side of the line. Then I had a blood test and the probability of me having a baby with Down Syndrome was declared to be very low, and the issue seemed to go away.
But the thing was, after the blood test, I found myself wishing I hadn’t had it, partly because of the decision it had entailed making. Perhaps (probably) it is very easy to say, but I slowly started changing my mind. I think for child number two (assuming there is one), that we will draw the hypothetical line somewhat differently.
And I think posts like this really help with making these decisions. A lot of the concern about having a Down Syndrome child for me was what would happen to him/her after we were gone. We’re not old parents, but neither are we young ones. Knowing that there are places and people that would mean a Down Syndrome adult would not be left alone really helps.
So thank you Michael. From the bottom of my heart.
Dave2 12.03.08 at 10:47 am
ozma, are you pro-life? I ask because you seem to attribute serious moral significance to being a member of Homo sapiens.
Alex 12.03.08 at 10:53 am
The issue here that Peter Singer has always shirked is uncertainty.
+1. It’s all “If you believe X you must therefore believe Y bizarre corner case. Eh? Eh?” All bright lines and black’n’white judgments. It’s the Internet libertarian mindset, just applied to being nicer to animals rather than being nastier to the poor. In this case, as is usual with Internet libertarians as well, his delight in his own cleverness has led him to completely ignore some rather ugly class assumptions buried in his logic. (Woody Allen as the fucking test of humanity. Jesus wept.)
What this suggests to me is that Burke was right. There is a lot of good stuff in common sense judgments and traditional assumptions that isn’t necessarily captured in a neat syllogistic rule set. There’s a lot of crap in there as well, of course.
Asperger’s syndrome is not a metholodogy.
Alex 12.03.08 at 11:03 am
Actually, can we just get rid of purity? Fuck it. It’s this obsession with pure thought that leads us into all kinds of appalling stupidity.
Dave2 12.03.08 at 11:03 am
So far two comments (one by daelm, one by Alex) have branded Peter Singer with the label “Asperger’s”, with an air of triumph and scornful disgust.
So much for a humane perspective on cognitive disabilities!
Michael Bérubé 12.03.08 at 12:08 pm
OK, catching up at last. Many thanks for the kind words to everyone who’s offered kind words!
EK @ 33: also thanks. And, of course, I’m not blinking away the ethical dilemmas presented by people with severe and profound disabilities. That’s why I talk about the roles of surrogates and guardians.
dWj @ 34: oh, that Italy-and-Holland story. Sigh. It originated with Emily Kingsley — yep, that’s right, the mother of that heartbreakingly eloquent Jason Kingsley above — and of course it does all kinds of wonderful work whenever people use it to reassure new parents of an infant with a disability that their lives aren’t ruined or smashed or completely over. Just, you know, different. (Like John Lennon’s line, “life is what happens to you while you’re busy making other plans.”) But no, having a child with Down syndrome isn’t really like going to Amsterdam. Obviously enough. The good news is that in my case, having Jamie has often been way more fun than going to Amsterdam.
functional @ 35: But is cognitive capacity a useful criterion for deciding whether some living things are “people†in the first place? Careful now, because cognitive capacity is usually the first thing when one asks pro-choicers why fetuses aren’t “persons†yet.
Thanks for reminding me to be careful! I almost forgot. But you must be talking to some pretty odd pro-choicers. The ones I know, beginning with myself in Life As We Know It, prefer to talk about the viability of the fetus rather than its cognitive capacity. Because, you know, we tend to think that an entity that can’t survive outside the womb has a different moral status than an entity that can.
Michael Bérubé 12.03.08 at 12:15 pm
Now back to Lizzie, as promised. In the US, there aren’t very many school districts that are adequately funded by any criterion, so, as I say in Life As We Know It, blaming special-needs kids for eating more than their share of time and money is a little like blaming the homeless for the lack of low-income housing. (Not that you were doing that — you were just asking about the just allocation of resources.) The good news, though (I’m all about the good news today), is that the early-intervention programs I’m speaking of are relatively inexpensive, and certainly don’t take anything away from anybody; they simply provide speech and physical and occupational therapy to people who need it, and that doesn’t deprive anyone else of anything (unless one imagines that any resource that goes to a sick or disabled person somehow diminishes the life chances of people who don’t need those resources). And, of course, when parents try to provide their children with rich and stimulating environments — after having been informed that their kids with DS will respond to such environments — nobody’s the poorer.
novakant 12.03.08 at 12:19 pm
But just saying, hey, relax, take a load off in the schoolroom is NOT going to change what the larger society looks like: young people must excel at one of a limited array of things, many of which are decided in school (including sports, music, drama, & artistic talents) or their life chances are really pretty limited and impoverished (literally and figuratively).
You know, a lot of people are quite happy to work in comparatively undemanding jobs and probably not fully “realize their potential”, as long as they can make a decent living and don’t have to work too hard. There is this odd assumption among many ambitious middle class people that everybody shares their goals and values and that all those leading working/lower middle class existences must be unhappy or downtrodden. I’m not denying that there are arbitrary boundaries blocking social mobility and that education is important, but there are also a lot of people who are just fine with being a builder, a waiter, a secretary or whatever. Some of them don’t have the potential to go on to higher things, but some of those who do have it simply don’t want to go to college, can’t stand the stress that social advancement would entail or prefer to stay in their hometown instead of moving to the city. They might also see their jobs only as a means to an end and instead like to devote their energy to their family or their hobbies. And there is absolutely nothing wrong with that, both because society will always need people to do these jobs and because it is a legitimate personal choice. So instead of pushing everybody as hard as possible to be the best they can be, I think it would be much healthier if we as a society focus on ensuring that people choosing such a path can make a decent living, that they are not looked down upon and that their contribution to society is valued just like anybody elses.
Mother 12.03.08 at 12:22 pm
-52
I am not sure how to read your post about the “future enlightened generations will not be looking back and marveling at our brutality in permitting a holocaust of spontaneous abortions to occur.” Is this an attempt at humor? Puzzling. I have had miscarriages, ie spontaneous abortions, and do not find the connect to the discussion. Losing a child through miscarriage is in no way the same as elective termination based on diagnostic testing. You seem to trivialize both with your comments.
Michael Bérubé 12.03.08 at 12:37 pm
And now for the final round (for now). First, what Carol said @ 40. Very much what Carol said @ 40.
Second, Father of Tommy @ 45: good questions all, but allow me to demur from the proposition that “to recognize a disability tacitly recognizes that an individual of a certain kind is suffering.” Plenty of people with disabilities don’t suffer at all. There are, for instance, lots of social contexts in which it is no disability to be deaf (like when you’re trying to read), and Jamie, for his part, is a thoroughly happy kid. Of course, if he winds up with Alzheimer’s in another 25-30 years or so, he will very likely suffer from it, and so will I. People in disability studies tend to be suspicious about the discourse of “the cure,” and for good reasons — but I’m not against curing some stuff, myself.
Katherine @ 55: We’re not old parents, but neither are we young ones. Knowing that there are places and people that would mean a Down Syndrome adult would not be left alone really helps.
This really is crucial, isn’t it? Rayna Rapp’s book, Testing Women, Testing the Fetus is full of examples of women who had to make these excruciatingly difficult decisions based in part on their worries about whether anyone would be around to care for their children decades on.
And Julian @ 52:
I don’t want to clutter up the comments page for your original post about Singer after discussion has ceased, but it almost seems as though you’re simply saying that we can’t define ethical views regarding life with any rationality whatsoever until we look back at them years later in hindsight.
Surely it doesn’t almost seem as if I’m saying that rational judgments depend on hindsight! I merely remarked that our moral judgments have changed over time, and very likely will change in the future. In the meantime, we muddle through as best we can. But I think it’s better to muddle through by thinking “we’re making this up as we go along and have to do so as best we can” than by thinking “ah, now we are finally discovering the moral principles inherent in the universe.”
By that token, since our concern for life should be so profound, should we be taking steps (such as future medical research) to prevent the spontaneous abortion of embryos and fertilized eggs that takes place without human intervention?
I don’t think so, no. See my response to functional. I don’t see any reason to grant embryos the status of living human beings. And where precisely did the “by that token, since our concern for life should be so profound” come from? It doesn’t follow at all from an antifoundationalist account of value judgments.
How do we know that future enlightened generations will not be looking back and marveling at our brutality in permitting a holocaust of spontaneous abortions to occur?
We don’t, of course. All we know is what I’ve said on my own blog: after we pass from this earth, the planet will be ruled by giant enlightened insects who have really good musical taste. We don’t know what they will think about your question. More seriously, as someone remarked to me the other day, isn’t it odd that philosophers invent these “rational aliens” who somehow prove their points? It’s like the philosophy version of Thomas Friedman’s string of pro-globalization cab drivers.
Sam C 12.03.08 at 1:12 pm
JAM at 38: I’d like to see some evidence for your characterisation of Singer. I don’t recognise him at all in, for instance, ‘The bottom line is that Singer’s positions on animal suffering depend entirely on whether he perceives that such suffering can easily be leveraged to demonize other people’.
More generally, I’d like to see the several people who’ve objected to Singer’s style of reasoning offer some suggestions as to how we should think about ethical dilemmas. Michael B’s combination of anti-foundationalism and close attention to factual detail is one attempt at that problem – but, as I’ve said in other comment threads, not one that I fully understand, and not one where I completely see the distinction between Michael and Singer.
This isn’t an attempted gotcha, it’s a genuine interest: I’m a professional moral philosopher, I’m about to start another round of teaching applied ethics to undergraduates, and I increasingly wonder about what kind of example of moral thought I’m giving them.
Dave2 12.03.08 at 1:19 pm
Michael wrote: “But you must be talking to some pretty odd pro-choicers. The ones I know, beginning with myself in Life As We Know It, prefer to talk about the viability of the fetus rather than its cognitive capacity. Because, you know, we tend to think that an entity that can’t survive outside the womb has a different moral status than an entity that can.”
First, I doubt the claim that pro-choicers typically care about viability. The ones I know (including myself) care about whether the fetus has certain cognitive traits (e.g., some level of awareness, the capacity to feel pain).
Second, you insinuate with “you know” that a concern for viability is good common sense. But I suspect it won’t stand up to any serious scrutiny, at least as a basis for fetal rights. For one thing, viability depends on what technology is available for keeping the fetus alive. That would mean, it seems, that fetuses in Boston might well get their basic human rights a bit earlier than fetuses in Tupelo. But it would also mean that, as soon as we develop a functional artificial womb, zygotes and unimplanted blastocysts have rights. And it is hard to believe that a single cell has a right to life simply because we’re capable of artificially incubating it.
Dave2 12.03.08 at 1:28 pm
Mother, I thought the point was about ethical reasoning and what deserves what level of moral regard. In particular, the point was that the mere possibility that future generations will condemn our generation for failing to extend some level of moral regard shouldn’t lead us to doubt our convictions about the matter. After all, everyone in the discussion presumably agrees that it would be ridiculous to extend such a high standard of care to fertilized eggs that we even protect them from miscarriage, and yet even here there is the possibility of future condemnation.
Michael Bérubé 12.03.08 at 1:38 pm
But it would also mean that, as soon as we develop a functional artificial womb, zygotes and unimplanted blastocysts have rights. And it is hard to believe that a single cell has a right to life simply because we’re capable of artificially incubating it.
You’re considering an entity “viable” if it can be incubated in an artificial womb?
Sam C 12.03.08 at 1:57 pm
Dave2 – not disagreeing with your reasoning, but I think this kind of informal reductio (if A then [weird possibility X], but X is utterly bizarre, so not A) is one of the styles of moral thought that professional philosophers and applied ethicists like, but which, to many other people, suggest that we’re completely insane. I’m not sure why this should be, or who’s right…
Michael B – that seems a normal definition of ‘viable’ to me: capable, in its environment, of growing, living, etc.
Dave 12.03.08 at 2:00 pm
I was under the impression that pro-choicers cared about the woman. And quite rightly so. Only after that comes the unpleasant fact that a ‘viable fetus’ is, in actuality, the same thing as a ‘premature neonate’, and that makes things complicated, at a practical level of social responsibility.
Rich Puchalsky 12.03.08 at 2:13 pm
“More generally, I’d like to see the several people who’ve objected to Singer’s style of reasoning offer some suggestions as to how we should think about ethical dilemmas. ”
How about “First, do no harm”? I thought that Singer had a reasonable argument when it came to reasons why beings should be included within the universe of those who needed to be considered morally. I don’t think that his arguments work similarly well when it comes to exclusion.
I referred to the Precautionary Principle above. There’s a similar discussion going on with regard to environmental issues that recognizes that uncertainty itself is a good reason to avoid irreparable-harm decisions.
I don’t find the attempted walkback that Michael uses with regard to abortion to be very convincing, though. I don’t see anything magic about “viability”. A person who needs a machine to breathe is not viable by themselves, but we wouldn’t turn the machine off in many cases. In practice, I think that most pro-choice people think that in a contest between the rights of the mother and the fetus, the mother has more, not that the fetus has none. We make decisions between competing rights all the time.
Lastly, I don’t like the “Aspergers” talk about Singer either.
John Protevi 12.03.08 at 2:22 pm
Dave2, trying to find out when and on what criterion “fetal rights” kick in begs the question and / or loads the dice. In the US, at least, since Roe, the legal aspect of the abortion debate is about balancing the mother’s right to privacy against various state interests. It seems to me that if you want to make fetal rights part of the conversation you have to argue for why that improves the conversation.
Sam C 12.03.08 at 2:48 pm
Rich: ‘How about “First, do no harmâ€?’
An appealing principle, I agree. But it has two problems:
1. Often, there is no option which does no harm: instead, we have to balance preventing some harms against allowing others (harm to parents vs harm to children; harm to chimpanzees used in medical experiments vs harm to sick humans). How should we do this?
2. More fundamentally: part of what’s at stake is what harm is. Singer thinks (roughly):
that only creatures with interests can be harmed; that equal interests ought to be taken equally into account in our deliberations; that having interests depends on having certain capacities (and that this relation is continuous – it’s not that if you have capacity X you’re in, and if not, not; it’s that the more and more complex capacities you have, the more, and more significant, interests you have).
John Protevi 12.03.08 at 2:54 pm
Let me clarify my comment in 71 by way of responding to Rich Puchalsky: as I read the issue, in the American legal debate, “viability” is *not* about fetal rights, but about when the scales tip in favor of state interests versus mother’s right to privacy. The state’s interests in the Roe wording were in “protecting the health of the mother” (allowing regulation during 2nd trimester) and “protecting the potentiality of human life” (alowing regulation or prohibition during 3rd trimester, that is, after “viability”). AFAIK, that’s the “core” of Roe that Casey and other decisions upheld. Of course lots of people want to make “fetal rights” part of the conversation. But in at least this “core,” it’s not part of the conversation. So I think the burden is on those who want to introduce it to show how it improves the conversation.
Barbara 12.03.08 at 2:57 pm
I saw a bit of myself in Katherine @55. I was an older first-time mom and I had an amnio because we were pretty sure we didn’t think we could handle having a kid with a disability. It came back negative, we sighed in relief, and then when our kid was 3, he was diagnosed with autism. Now I see how naive I was, thinking that the results of one test was going to somehow protect me. Needless to say, there are a lot of disabilities (including many forms of mental retardation) you can’t get advance notice of.
Anyway, it turned out we could handle having a kid with a disability just fine, though it certainly helps that we are educated and middle-class, so we are able to both navigate “the system” and pay for all sorts of helpful things it doesn’t. Which brings me to the real, off-topic reason I am de-lurking: Michael, have you written yet about what ever happened with your experiment with the facilitated communication / typing program? Because my kid’s writing issues sound enough like Jamie’s that if you found that program helpful, it would be next on my list of things to try. Thanks.
Sam C 12.03.08 at 3:09 pm
John Protevi – you’re assuming that the conversation is entirely about the US. But Singer’s Australian, I’m British, and (more importantly) the issues raised are matters of concern for all humans, and the philosophical arguments about them don’t typically appeal to US legal precedent. Why should they?
John Protevi 12.03.08 at 3:22 pm
Sam C, you’re right, I should have been more explicit that I’m only commenting on “viability” in the context of the US abortion debate, where “fetal rights” is an extremely loaded term.
John Protevi 12.03.08 at 3:32 pm
Sam C, to follow up, though: Dave2’s and Rich Pulchasky’s use of “pro-choice” seemed to me to indicate they were working in an American context. So to the extent they are, then I think my comments germane. But again, you’re right that I could have been more explicit about that.
Father of Tommy 12.03.08 at 3:32 pm
Michael Berube
I think you miss my point. I did not speak of “cures.” I spoke of alleviating the suffering of someone, rather than destroying the one who suffers. I expect that people in disability studies are more averse to destroying the sufferer, than they are even to “the cure.”
But it seems to me you trivialize or at least ignore the notion of a disability, or if we aren’t supposed to use that word, the difficulties people face. Of course there are social contexts in which being deaf doesn’t involve any suffering, namely those contexts in which that ability isn’t exercised at all, as in your example. Although even in your example it isn’t quite true, as with teaching the very young to read difficulty in hearing is in fact a distinct kind of suffering. Most instruction in reading takes place through oral communication, and we aren’t about to stop that as a society. So recognizing the suffering of those who are placed in that oral setting who cannot hear, we typically attempt to alleviate it through various programs.
But less trivially, there are many social contexts in which difficulty hearing is a cause of suffering, as for example in classroom instruction generally, or listening to a musical performance. These latter are human goods which are more difficult to participate in if one suffers from that difficulty. And again, in those relevant social contexts we tend to attempt to alleviate the suffering to the extent that we can with various programs. And we do so as a matter of justice, in attempting to give to those human beings the goods that are due to them. How odd it would be to say that because there are resource problems giving those human beings all that is due to them, we ought to destroy them ahead of time if we can identify them, in order to avoid the difficult resource questions.
And as you know, a good deal of why people with Down Syndrome do so much better now than when they were warehoused in institutions is because of the early intervention programs that are often made available to them from birth. But those early intervention programs are directed to them precisely because we recognize the difficulties they face in participating in human goods that are more readily available to those who are not born with those difficulties. And we attempt to alleviate that suffering, rather than destroy the sufferers, or as in the past warehouse them.
So my point was not one about suffering and happiness, as you seem to suggest. Do you really want to suggest that happiness excludes suffering as your counterexample of your son suggests? I suffer in various ways, and nonetheless consider myself very happy, indeed blessed. And that’s pretty much the case with nearly everyone I know, except some of those whose suffering is extreme.
My point was that we ought not to ignore suffering, but ought, rather, to try to alleviate it. And our desire to alleviate it is an expression of solidarity or friendship with the one who suffers, a solidarity that is prior to questions about what the one suffering from some difficulty is or is not capable of achieving. We tacitly recognize the other as the kind of being we ought to help. (And there is no reason to suggest that we cannot recognize and express solidarity with kinds of things other than human beings; it just won’t be the same as human solidarity.)
Why is it that only those who typically suffer from some sort of cognitive or physical disability are put to the test? Suppose we were able to develop a prenatal test for a wastrel gene. And then we determined that while this infant in the womb does not have any other genes that would indicate anything less than “normal” cognitive abilities, nonetheless, he is and will be a wastrel, so there isn’t a whole lot we can expect from him. Would we submit him to the same test of expectations that we as a culture submit infants with Trisomy 21 to? Or wouldn’t it be better to express a certain solidarity with him prior to this fact about his genes, and try to help him achieve what he can achieve?
Sadly it is seems to be a general human failing, especially on the part of the “normal,” that whenever they submit others to tests of expectations, even when those others suffer from no cognitive or physical difficulties at all, expectations aren’t met. It’s just that our disappointment with some is more threatening to their lives than is our disappointment with others.
Better not to get into this expectations game at all than to try to win it. Better indeed to suffer in solidarity with others, than to eliminate them from our midst as we did with our warehouses in the past, and as some would like to do by other means today.
EK Buddenhagen 12.03.08 at 3:33 pm
I was a social worker with clinical and administrative responsibilities. When I worked with families with members who were developmentally disabled, I had the opportunity to see not just many different kinds of people, but many of the different kinds of settings they lived and worked and went to school in, some wonderful, some awful.
I certainly didn’t mean to suggest that people should sit at home watching soaps and playing with the cat (although an awful lot of people who don’t have dds do that). It depends what you mean by fully public lives, though. I think there are by the nature of the diagnosis limitations to how far a person can go. A person with mental retardation would lose the diagnosis if she could, for instance, get good SAT scores. I can’t really see any of the people I worked with becoming doctors or lawyers. I did see people I worked with working in libraries, but they shelved books. I think some could have checked them in and out. I don’t think they could have written research articles, though. And often people with ds and various other dds have physical difficulties: lack of coordination, muscle weakness, etc. which preclude them from participating on “regular” teams. I think they have a lot more fun when they do actually participate with people they are capable of participating with than when parents angrily insist a baseball team be “integrated.”
To tell you the truth, I don’t know many people who don’t have disabilities who participate in a rich, recognized way in public life: it doesn’t seem to be the dd that is the barrier. However, people with dd, especially ds, are much more in evidence in public life today than twenty or thirty years ago. People with dd are perfectly capable of getting involved in music, art and drama activities. In St. Louis, one of the most moving theater productions I ever saw was Tennessee Williams’s Glass Menagerie with a “mixed” cast. I have to add, they were “high functioning.” I saw an art exhibit in Montreal in the art museum of the works of people with dd. People with dd do go out with their families and do participate in volunteer activities and do go to public events all the time. I don’t know that a dd person could be an Itzhak Perlman, but then most of us couldn’t be either. You wouldn’t want me a or a person with dd playing with the NY Philharmonic, unless the person with dd was one of those who had that special gift for music. Even so, he might not be able to understand how to blend in musically with the orchestra.
It’s important to remember as someone said above that we all have limitations. The world is not boundless for any of us, we really can’t be anything we set our minds to. And I do think your version of life in which young people “must excel” is one that needs changing. Because there really is a lot more young people can participate in if there parents let go of the notion that they MUST go to college. A lot of non-dd kids really aren’t cut out for that either.
I think prejudice is maybe something you are trying to deal with: like people of color and gays, people with dds and mental illness are victims of prejudice which may make public life more problematic for them. The amount of love and acceptance a child is worthy of doesn’t have to do with his abilities. Ironically, I have come across quite a number of parents of people with dds who were rabidly anti-gay and anti-people of color.
SusanC 12.03.08 at 3:33 pm
Seth, at #24, wrote:
It strikes me that there’s something fundamentally wrong with judging people’s worth based on how smart they are (ability to appreciate Woody Allen movies, read Nietzsche in German etc). As academics, we might be unusually prone to it, as we compete against each other (for grants, tenure etc.) on this basis. But it seems to me to be lacking as a means to judge how morally obligated we are to someone, or their right to live (as opposed to, for example, whether they get the post of reader in moral philosophy). Apart from anything else, for almost everyone, there is likely to be someone else who is “smarter” (for whatever metric of intelligence you care to fix on). I’m reminded of a line from Conrad’s The Secret Agent: “First the great multitude of the weak must go, then the only relatively strong.”
There a similar problem with the “limited resources” argument: in a society with welfare funded by taxation, the group of people who are taking out more than they put in is probably not small, and isn’t just the “disabled”.
Sam C 12.03.08 at 3:36 pm
John P – ah, I see: I missed the political valence of ‘fetal rights’. Thanks for clarifying.
will 12.03.08 at 3:57 pm
it turned out we could handle having a kid with a disability just fine, though it certainly helps that we are educated and middle-class, so we are able to both navigate “the system†and pay for all sorts of helpful things it doesn’t.
Yet, still you never lose that horribly difficult, stomach-churning concern about what happens if you die before your child dies. Contingency planning, building a support network, etc. It makes challenging all parties to push your child’s development that much more important.
Mother 12.03.08 at 4:54 pm
-67
DAVE2,
The point about ethical testing suffers when you deviate from valid points to citing examples that are extreme. Thirty years ago “it would be ridiculous to extend such a high standard of care” to children with down syndrome. Perhaps a better example to illustrate your point would be to cite the current search and destroy diagnostic tests that are targeting unborn children with down syndrome. We do not have to discuss extreme examples and their worthiness of future moral condemnation as basis for argument.
seth edenbaum 12.03.08 at 4:58 pm
I find utilitarianism deeply offensive and see laws as blunt instruments.
Many people, academics and self-described intellectuals in the US, think of utilitarianism as morally profound and see laws as capable of great precision. But since there is no evidence of precision in law, and much evidence of stumbling, false starts, revision and more revision, unending, how can you make the case, outside states of extreme crisis, for utilitarianism as anything more than the bluntest of blunt instruments?
All this reminds me of arguments over academic freedom and tenure, as if academic freedom were some sort of absolute rather than a formal doctrine saying that once you’re in it should be hard to kick you out again. And there are reason’s for that doctrine. I defend it. But professionalism and freedom are not the same thing. Freedom would say that my peers, if they exist, would have no rights of review.
There is no absolute fairness, there’s no perfect justice and Platonic forms have no place in the social world. Mathematicians are Platonists. Words are not numbers, and the fantasies of naturalized epistemology change nothing. Laws are not the foundation of democracy, arguments over law are the foundation of democracy. Revision by formal process is foundation of democracy. Other than the most general, all rules are provisional.
Once past the post and you’re in. So where do we put the post?
There’s no one answer to the moral questions revolving around abortion, and until all babies are grown in test tubes there never will be. Where do we draw the line that separates the state from the individual, one individual from another and from the group? Where do we mark the artificial division, the vulgar oversimplification of a process in a timeline and a continuum? You want freedom? No language for you.
There is no answer for questions for what it means to be human, there are only arguments.
I would argue the only question to ask a doctor is will my newborn child be capable of joy? Will he/she be able to experience laughter? Will he she be able to communicate and be communicated with? I wouldn’t call that a Platonic truth, but it’s a logic I would follow.
“It strikes me that there’s something fundamentally wrong with judging people’s worth based on how smart they are.” I would agree, but that becomes a bit of a problem with people like our President. More ambiguity
Call it what you want: Aspergers or a form of empathetic blindness, the result of genetics or trauma. I’ll say again: read Daniel Mendelsohn on Singer.
rb 12.03.08 at 5:28 pm
It strikes me that there’s something fundamentally wrong with judging people’s worth based on how smart they are
Ya think?
Alex 12.03.08 at 6:13 pm
It strikes me that there’s something fundamentally wrong with judging people’s worth based on how smart they are (ability to appreciate Woody Allen movies, read Nietzsche in German etc).
Ding! Because you can always raise the bar if you think you’re above it.
There is, of course, a big difference between judging someone as themselves based on how smart they are, and judging someone’s actions based on how smart they are.
ozma 12.03.08 at 6:28 pm
ozma, are you pro-life? I ask because you seem to attribute serious moral significance to being a member of Homo sapiens.
I know! Humans! I think they have serious moral significance. How crazy am I?
Obviously, I must be a fanatic of some kind.
functional 12.03.08 at 6:46 pm
But you must be talking to some pretty odd pro-choicers. The ones I know, beginning with myself in Life As We Know It, prefer to talk about the viability of the fetus rather than its cognitive capacity. Because, you know, we tend to think that an entity that can’t survive outside the womb has a different moral status than an entity that can.
Nonsense. While viability is certainly widely mentioned, it’s ubiquitous to find pro-choicers dismissing the personhood of fetuses based on their lack of cognitive capacity, their lack of full consciousness and self-awareness, their inability to feel pain (before a certain point), etc. If you read David Boonin’s famous book defending abortion, for example, he places a great deal of importance on “organized cortical brain activity.”
Do you really want to profess ignorance of that argument? That’s the best you can do when asked to distinguish abortion from treatment of the mentally disabled?
Michael Bérubé 12.03.08 at 7:19 pm
Rich @ 71: In practice, I think that most pro-choice people think that in a contest between the rights of the mother and the fetus, the mother has more, not that the fetus has none.
John @ 74: Let me clarify my comment in 71 by way of responding to Rich Puchalsky: as I read the issue, in the American legal debate, “viability†is not about fetal rights, but about when the scales tip in favor of state interests versus mother’s right to privacy. The state’s interests in the Roe wording were in “protecting the health of the mother†(allowing regulation during 2nd trimester) and “protecting the potentiality of human life†(alowing regulation or prohibition during 3rd trimester, that is, after “viabilityâ€). AFAIK, that’s the “core†of Roe that Casey and other decisions upheld. Of course lots of people want to make “fetal rights†part of the conversation. But in at least this “core,†it’s not part of the conversation. So I think the burden is on those who want to introduce it to show how it improves the conversation.
Ah, a little help from my friends. Sorry if I wasn’t clear about this above — I was thinking of the bit from Roe, “With respect to the State’s important and legitimate interest in potential life, the ‘compelling’ point is at viability. This is so because the fetus then presumably has the capability of meaningful life outside the mother’s womb. State regulation protective of fetal life after viability thus has both logical and biological justifications. ”
And no, functional, I haven’t yet read Boonin’s book, and I certainly hadn’t read it when I wrote Life As We Know It, six years before it was published. You may shoot me now — though I’d prefer that you wait a few months until I finish McMahan and get to it, because it looks great. Thanks for the tip.
Anonymous 12.03.08 at 7:30 pm
Let me start by saying that I am not a parent so I have not had personal experience of having children and raising them. I have been a bystander to the process with my several neices and nephews.
It seems to me that what parents can expect from any child that they have is that the child will give them joy and sadness throughout the child’s life.
What a child can expect from its parents is unconditional love and all that they need to reach his or her potential whatever that may be.
There is no guarantee regardless of how ‘perfect’ a child is how much joy, sadness, love and potential there may be.
By the way, what is ‘perfect?’
Michael Bérubé 12.03.08 at 7:33 pm
And Father of Tommy@ 79: But it seems to me you trivialize or at least ignore the notion of a disability, or if we aren’t supposed to use that word, the difficulties people face.
Sigh. Immediately after my presentation at that conference, Tom Koch got up to chastise me for using the word “disability,” which, he said, implies loss or lack. Now I’m being charged with not emphasizing disability enough. There are some years when I just can’t do anything right. But I have a (cough) functional idea of disability, and I try to be context-specific about where and when and how a disability actually is disabling.
Better not to get into this expectations game at all than to try to win it. Better indeed to suffer in solidarity with others, than to eliminate them from our midst as we did with our warehouses in the past, and as some would like to do by other means today.
OK, I think I probably misunderstood your initial point. I admit to having a hair-trigger reaction to being told (as I have been told) that Jamie “suffers from Down syndrome.” I like this Buddhist sense of suffering better. Thanks for coming back and straightening that out.
Rich Puchalsky 12.03.08 at 7:59 pm
I don’t think that getting into the legal U.S. context is that productive (if any blog comment thread can be said to be productive), and I didn’t mean “pro-choice” to signify the US.; that was just habit. The legalities are not only applicable only to the U.S. context, even within the U.S. I don’t think they’re an example of sterling legal reasoning from first principles — it was the usual Supreme Court botch job, designed to ratify what a majority of people already felt was right. Although people who want to defend the right of legal abortion in the U.S. certainly have to deal with it, I don’t see any reason to do so in a discussion of philosophy.
I think what we’re really discussing is a defense of potential. The fetus has the potential to grow into an adult person. A child with Downs Syndrome, as Michael writes, has the potential to do many things that we didn’t think they could do, based not only on individual variation but also on progress in social technology. A person in a coma but with a relatively undamaged brain has the potential to wake up. This seems to be to be one of the primary unvalued elements in Singer’s scheme.
Potential can’t always win out over existence, of course — this seems to be to be particularly important in the case of abortion, since people create huge numbers of cells that can potentially become people, and we don’t save them all. (Cue Monty Python song “Every Sperm Is Sacred”.)
Rich Puchalsky 12.03.08 at 8:08 pm
Sam C. writes re “First, do no harm”:
“An appealing principle, I agree. But it has two problems:
1. Often, there is no option which does no harm: […]
2. More fundamentally: part of what’s at stake is what harm is. […]”
There is no single principle that is going to answer all of one’s moral questions. “First, do no harm” is a conservative principle, in the old-fashioned sense of that word. It means that you should be biased towards holding back from actions that cause harm (even in the name of arguably preventing greater harm), and probably extends towards taking a generous view of what harm is.
Anonymous 12.03.08 at 8:19 pm
We know experientially, that a fetus (without the interference of an abortionist) has a good chance of growing into an adult. A sperm that does not meet an ovum does not.
Kathleen 12.03.08 at 8:31 pm
EK — thanks for following up on your earlier point, I understand more about what you mean, now. But I think there is a different perspective that comes from working with school-age children and living with adults with developmental disabilities. School is flexible and supportive in ways that life is not; no matter how awesome, highly-funded, enriching, etc. etc. school programs are, there is a day when a person becomes an adult and has to rely on society, not school, to make a space for him or her. And currently, as things stand, the options are not wide-ranging and fulfilling. When you light-heartedly say, “well, not many people fully participate in public life” or novakant says not everyone can be a doctor or a lawyer, so why don’t we just say all jobs are great and respectable, from college professor to stockroom labeler, well, sure, okay.
The thing is, that’s not how society works and it really.hurts.people, especially people with developmental disabilities, and especially when they can’t even get the stockroom labeler job. Our society makes comfy spaces for some kinds of people and no space at all for other kinds of people, and that’s an issue that is NOT resolved by saying “well, I for one think my doorman is just as important as my orthopedist and I also really do believe in my heart that neither of them is any way superior to my cognitively impaired niece who gets fired repeatedly from every low-wage job she ever gets because she gets mixed up easily”. I mean, if I were given to bad language, I would say, you know, majorly eff yoo to that kind of attitude. It’s lazy and heartless, and doesn’t address the problem or even try to do so; the problem I am talking about requires a major re-thinking of how we include people in society and how we think social life should be made.
p.s. could I put in one small request, that people who don’t actually care either way about disability issues NOT hijack this thread to air their views on abortion, pro and con?
Anonymous 12.03.08 at 8:51 pm
Kathleen,
I care very much about people with disabilites and their oportunities. It is unfortunate that you misinterpreted my comments. My nephew has Down Syndrome and I want very much to see him reach his potential and be included as an active, contributing member of society. I was responding to post #95’s last comment about the potential of sperm and did not mean to ‘hijack’ the blog.
Father of Tommy 12.03.08 at 9:20 pm
Kathleen,
Are you aware that the passage of Peter Singer’s that Michael Berube mentions to begin this thread is taken from Singer’s 1994 book entitled “Rethinking Life and Death,” and it occurs in a discussion in that book precisely concerned with arguing the moral legitimacy, indeed even good to be pursued in either aborting children diagnosed with Down Syndrome, or letting them die after birth up to perhaps 28 days, that is, infanticide? You’ll find it on pages 212-217 . (http://books.google.com/books?id=d5W1xE1GM2EC&pg=PA213&lpg=PA213&dq=%22Rethinking+Life+and+Death%22+down+syndrome+abortion&source=bl&ots=kH-XSGHOFM&sig=KRgSylUldKznJaVEOgxf44CwG10&hl=en&sa=X&oi=book_result&resnum=1&ct=result#PPA213,M1)
As he puts it there, “Both for the sake of ‘our children’, then, and for our own sake, we may not want a child to start on life’s uncertain voyage if the prospects are clouded. When this can be known at a very early stage of the voyage we may still have a chance to make a fresh start. This means detaching ourselves from the infant who has been born, cutting ourselves free before the ties that have already begun to bind us to our child have become irresistible. Instead of going forward and putting all our efforts into making the best of the situation, we can still say no, and start again from the beginning.” The 28 day figure is given on p.217.
Anonymous is hardly hijacking the thread. And what reason do you have for thinking he or she does not care about disability issues?
Anonymous 12.03.08 at 10:01 pm
One more comment about potential:
Sometimes we become focused on what a person can potentially contribute to society from the measurable examples of holding a job, playing a sport or contributing to a conversation as a means to measure their worth.
The major potential that a person with a disability may have is in what we learn about ourselves and how we grow from the experience. This is true of every person we meet but due to their special circumstances and challeges, the potential is for us to grow beyond our comfort zones, make us better people and improve our ability to contribute to society.
Helen 12.03.08 at 10:35 pm
We do not send our elders out to sea on floating chunks of ice.
In the light of the baby-boomer hatred so prevalent now, I wouldn’t be so sure. Don’t give people ideas.
Kathleen 12.03.08 at 10:49 pm
Anonymous — saying that what people with developmental disabilities can contribute to society is helping the rest of us learn about life is not a good answer. It would be a good answer if it were backed up by saying something like “so let’s propose, fight for, and support social policy changes that provide many forums in which people with developmental disabilities can have meaningful jobs, in which they interact not just as cute children but also as full-grown adults with all kinds of people, and are everyday members of the community in a positive way so that we learn from them the same way we learn from everybody else we encounter about the manifold variety of human experience”, sure, but from the general trend of your comments here what I think you mean is more an “witnessing-someone-else’s-difficulties-leads-to-my-noble-uplift-yay!” which is massively not a good, helpful, respectful response to disability because it does not make any consideration of the perspective and experience of people with disabilities themselves.
Anonymous 12.03.08 at 11:06 pm
Kathleen,
I am not as verbose as a lot of contributors on this blog and may have relied on the implication of my remarks. Again, it is interesting how you interpret my remarks and judge them. You might want to treat me with same respect that you wish for those who are disabled. I am new to blogging and this experience is teaching me a great deal about blogging and bloggers.
But let me be clear, I agree with you that just being a witness to a person with a disability is not enough. I should have been more clear in my remarks on this board that I believe we should fight for their right to be and advocate for them.
Kathleen 12.03.08 at 11:35 pm
Anonymous, thanks for clarifying your point, that is helpful.
Something that distresses me about discussions of disability focusing on childhood potentials and (often from there) devolving into debates about the absolute value of human life, abortion, etc. is that they derail what I see as really necessary conversations about the 50+ years of life that are NOT spent in utero or in schoolero.
A reason people fear having children with developmental disabilities is that it brings to their concrete awareness the fact that the vast majority of adults with developmental disabilities spend their lives under-employed and under-socialized (people who don’t have to think about this conveniently tend to assume “oh, I am sure there are many wonderful programs for people like that, and the lonely retarded guy I see at the bus stop is just refusing to take advantage of them”).
I know there are a lot of exceptions, actors with Downs, autistic authors, people working full-time for social justice and constantly involved in bracing, lively, public action. But that’s not true for most developmentally disabled adults. This is tragic, because the kinds of changes to grown-up civic and social life that would be nice for them — more protected employment (what’s so terrible about “make-work”?), more focus on creating public spaces and public occasions for social and civic interaction outside of shopping malls and Wal-Marts, less focus on ranked excellence within a few restrictive domains — would (1) be really nice for EVERYBODY, developmentally disabled or not; (2) help people be much, much, much less afraid of having all kinds of children — not just clearly-defined dd ones, but also weird ones, less than perfect and brilliant ones, less than athletic and socially adept ones; (3) not hurt the life-chances of math geniuses, champion ski-jumpers, or brilliant novelists one whit. In fact making more room for outliers in all directions would be the happy result, while also making “average normals” more relaxed about being average normals; right now, being an average normal means desperate clambering all the time so as not to slip downwards.
Tommy's Aunt 12.04.08 at 3:50 am
Isn’t understanding and embracing the absolute value of human life in all of its manifestations a key step in achieving the goals you outline above? Isn’t that what you are really asking society to do by your proposals?
Tommy's Aunt 12.04.08 at 4:03 am
Isn’t understanding and embracing the absolute value of human life in all of its manifestations a key step in achieving your goals? Isn’t that what you are really asking society to do with your proposals?
One could argue that we should do what you propose because it is good and leave it at that. But the question is why is it good? I think this brings us back to the absolute value of all human life.
Michael Bérubé 12.04.08 at 4:22 am
Barbara @ 75: Michael, have you written yet about what ever happened with your experiment with the facilitated communication / typing program? Because my kid’s writing issues sound enough like Jamie’s that if you found that program helpful, it would be next on my list of things to try. Thanks.
Oops, sorry I missed this earlier today, Barbara. I wrote about Jamie’s encounter with FC in a two-part post two-plus years ago, here and here. The second of these deals with Jamie’s actual experience; the first is a chatty review of the controversy.
Selma 12.04.08 at 4:34 am
Singer is used to expounding on behalf of subjects who have no voice and no vote – but since we cannot expect them to critique the latest snoozer from Woody Allen they must not live full, purposeful lives.
The man has obviously gone to his own head.
Regardless of what kind of chromosomes they have one never knows who a child will become, what talents they will have or whether they will be happy – well, as happy as possible.
Some philosopher he is. One thing in his favour is that he provoked this thoughtful piece.
Dave2 12.04.08 at 4:46 am
John Protevi,
I never intended to discuss constitutional law, I was discussing ethics.
Dave2 12.04.08 at 4:56 am
ozma,
Well, if you think that a fertilized human egg has serious moral significance (perhaps amounting to a right to life), I won’t say you’re a fanatic, but I’ll say you hold a pretty radical position. The reason I asked is I thought that, when you were speaking of being human as a criterion of moral standing, perhaps you hadn’t taken into account the implications.
Dave2 12.04.08 at 5:18 am
Mother, I agree that it is generally preferable to illustrate points with real-world examples. But remember that I was explaining the point of someone else’s example. Also, I’m not sure that your example helps illustrate the point. Maybe we could leave examples out of it and simply state the point: that if someone says future generations might condemn us for x, y, and z, without further details, the appropriate response is “so what?”
Michael, et al., for the record, I don’t see anything objectionably sci-fi about considering the technological possibility of moving the point of viability earlier and earlier in the pregnancy. Indeed, I’m told this is happening and will continue to happen.
roy belmont 12.04.08 at 6:29 am
Dave2@109:
if you think that a fertilized human egg has serious moral significance
Well mine did. I had one , yes?
It became me. Very significant.
Of the utmost critical moral significance.
Without that fertilized egg I’m nothing, not here.
Most linguistically distinct groups have creation myths, most religions as well. Because the origin of what we are is important, it’s significant.
In a very real way the fertilized egg is our personal creation myth.
Only it’s not exactly a myth.
But we can’t predict which fertilized eggs will eventually become someone, and even the most viable fertilized eggs give no indication of what the human they become will be like. Except in pretty rare instances.
So it’s an impossible task trying to establish the appropriate moral significance of a fertilized egg.
So because that’s impossible the default becomes none, for logical rationalists for purposes of logical rationalizing about the moral significance of fertilized eggs. The only functional attitude available.
Sort of like Solomon’s wager without betting on the come. Instead of the real mother screaming in anguish everybody just goes on about the business of the hive while the baby gets cut in half.
If the fertilized egg that became your wife has no (retroactive) significance then your wife has none either.
If no other significance is granted her it is your duty to insist that that retroactive significance is important, it is your duty to insist that it matters. It is the gallant thing.
From the limbless void of pure rationality no human being is permanently significant, because nothing is. Only subjectively, relatively, temporarily, do things gain significance. It is our task to make the assertion, and hold the line.
Sam C 12.04.08 at 9:57 am
A general note: Singer advocates several views with which lots of people disagree, but that doesn’t make him a bad philosopher. In fact, he’s an excellent philosopher (clear, precise, courageous about following the argument where it leads and about stating honestly what he’s concluded, serious about the real world effects of his thought). Several people on this thread (as elsewhere) are confusing ‘Singer disagrees with me about important things’ with ‘Singer is a bad philosopher’ or even ‘Singer is a bad person’. They’re worth distinguishing.
Michael Turner 12.04.08 at 10:25 am
From the limbless void of pure rationality no human being is permanently significant
I think that should be “From the limbless void of humanity, nothing of moral significance was ever made.”
I’d get an argument, though.
[Then this, from someone whose clues I get, I think]:
Actually, can we just get rid of purity? Fuck it.
Fuck it? But then it would no longer be . . . pure. And if we’re not careful, it might even result in something . . . viable.
Oh, I see it now.
[From the Department of Oh My God]
If you read David Boonin’s famous book defending abortion, for example, he places a great deal of importance on “organized cortical brain activity.â€
So do I. Ordinarily. But after reading that sentence, I need a drink.
OK, here comes a threadjack attempt that I hope will go down in flames, inspiring so much revulsion that people will be only too glad to get back to a tight focus on the Berube-Singer exchange and its relevant discussion threads.
What if amnio tests could pick up that somebody would become a sociopath, with virtual 100% certainty?
Morally disabled by an in-born empathy deficit. Not their fault.
There are some interesting arguments possible here, and you have to admit, the prospect of such testing is a lot more plausible than those scenarios where Arnold Schwarzenegger has 0.5 seconds to decide whether to pick Michael Moore up and throw him into the path of a trolley, in order to save n lives, where n > 1.
Here we go!
(1) Very high-functioning sociopaths (VHFS’s) who are trained to be very law-abiding might be valuable for certain purposes. Actually, I’ve read of studies suggesting that quite a few top executives are basically VHFS’s with a well-developed rational fear of the law, who therefore mostly avoid breaking the law — and prevent their underlyings from doing so — just to be on the safe side. Despite a lack of empathy, the smarter ones seem able to develop surprisingly adequate mental models of how normal people behave — individually and collectively — under the influence of this empathy thingy. As long as we’re stuck with capitalism for the duration, why not make the most of it? Let’s bring it up in the next board meeting. Our CEO is retiring soon.
(2) We might openly, legally, and very rationally discriminate against such sociopaths. For reasons that even they could be made to understand. (Intellectually, anyway. Asking VHFS’s to understand how we feel about them would only elicit a response that would seem either very slightly robotic or very slightly histrionic: “We know how you feel about us. But try to see our side of it, just for a moment. We have feelings, too!”) They would certainly be prevented from bearing or caring for children — with the possible exception of closely-monitored reproduction of other sociopaths. They might be banned from elective office, and from the judiciary. Outright bans might be unnecessary, however, if they were legally required to identify themselves as sociopaths in all contexts, perhaps with a subtle and non-unattractive cheek tattoo. After all, who would elect or appoint them? (How about: UNidentified sociopaths? Of a more environmental than genetic etiology? They might still exist. Something to watch really out for. You don’t want them getting secretly organized, do you?)
(3) Tthere might be no reason to bar very high-functioning sociopaths from certain kinds of policing or from the military. So long as there is any reason for strategic deterrence, you might actually want a sociopathic officer class in those lines of work. I’ve long thought that the choice of Curtis LeMay for the Strategic Air Command was motivated from of a recognition of how coldly he planned and directed the the firebombing of Japanese cities. McNamara had qualms and doubts and guilt — leading to burnout later, over Vietnam. LeMay, no. “Not only do we have the technology,” that choice said, “We also have The Man.” There might be yet other areas where VHFS’s would be a net plus. Think of the anguish we’ve all felt over certain people’s decisions in the workplace, moves that have you wondering if they have hearts of stone. Well, what if you already knew, going in? Time saved!
Food for thought. Not very appetizing food for thought, I’ll grant. But that was kind of the point.
Mother 12.04.08 at 11:39 am
-52, -110
Dave2, Well if you had skipped the examples and gotten to the point… being that “future generations might condemn us for x,y,z without further details the appropriate response is ‘so what’… well we could have argued the point. And we can use down syndrome as the point for illustration. Thirty years ago the medical community recommended institutionalization for children diagnosed with down syndrome. We now know that this was a very large mistake. Today, the medical community advocates for termination and this is evidenced by the myriad of testing for down syndrome and the current ACOG recommendation that all women under 35 get tested. There is much room for ethical debate and more importantly, a need. Future generations will look back to how we acted as a society and I think that is valid. Our arguments today will reflect on the type of society we have thirty years from now. It is not wise to say “so what”.
Also, you criticize ozma for his position that a fertilized egg has serious moral significance and that it is a pretty “radical position”. There is much conversation about the fertilized egg, specifically the ones that are held in banks. His views are not radical, they are representative of one side of the argument. Again, the ethical debate should be done in real time and it will reflect on our society in the future.
John Protevi 12.04.08 at 12:39 pm
Dave 2, where I come from, you can’t shield talk about rights from discussion of the concrete enforcement mechanisms for those rights. I realize you were proposing a reductio against using viability as a criterion for fetal “human rights.” I was just pointing out that *any* discussion of “fetal rights” in America concretely means increasing state power, for that’s the only concrete enforcement mechanism we have.
Maybe that means I don’t recognize “ethics” talk as divorced from “politics” talk. There’s probably a name for that position, and when I learn what it is, I’ll be like M. Jourdain, delighted to discover I’ve been speaking (whatever that position’s name is) my whole life.
EK Buddenhagen 12.04.08 at 2:57 pm
Kathleen —
Actually I have a lot more experience with adults than with children. My experience stopped in the 1990’s, but up until then in fact adults with DDs got far better service/attention/training, etc. than people with mental illness with whom I ended up spending more of my career. This is because of the parents of folks with DD in large part.
A big part of the problem is that a powerful hunk of US society tends towards a highly competitive, social darwinist-free market sort of attitude. Thus, there is little room for those not in competition. I know I am overgeneralizing. Our society thinks of education to enable people to compete, not to be good citizens. This has led us to accept that if something is not “efficient” or does not make money or whatever, it isn’t worthy of our attention. Unfortunately, this leads even presidents-elect to promise that every child will be able to go to college. (It would be great if every child went to college to become well rounded citizens, but that’s not why: it’s so they can compete for a middle-class life. Of course if everyone goes to college, that means there will have to be some other way to winnow out the highest achievers) This is not a universal attitude. Competence and cooperation could go together. Competence in things that don’t make money could be valued. But society is complicated and messy and we have to live with what is.
Another problem I see is that the country still is divided among, if you will, victim advocacy groups. Fetal rights, if you want, vs. pro-choicers. This means very few take a more global view, that we’re all in this together.
So I guess I’m saying advocate for folks, but more important, advocate for a gentler culture for everyone who needs to be advocated for.
Rich Puchalsky 12.04.08 at 2:57 pm
“Dave 2, where I come from, you can’t shield talk about rights from discussion of the concrete enforcement mechanisms for those rights.”
It’s possible to believe that majority opinion gets translated into political enforcement through one means or another without getting too interested in the exact means by which this is done.
It’s like the quote about the importance of the ideas of dead economists, something like that. Singer’s model of animal rights has largely instantiated itself into the world, because it offers a coherent framework that people with a more generalized sympathy for animals can believe in. That’s happened in different places through different legal and social means. But focussing on the means used in one place doesn’t really tell you much about the underlying idea.
Dave2 12.04.08 at 3:40 pm
Mother,
First, again, the example was someone else’s. You professed not to understand it and so I provided an explanation. Surely I am not to be criticized for explaining someone else’s example.
Second, everyone recognizes that later generations sometimes have something to teach earlier generations when it comes to ethics. However, that uncontroversial fact does nothing to undermine the original point that the mere possibility that the future will condemn us says nothing about our moral consensus (and that therefore we need something more substantive if we are to be put in doubt). So far as I can tell, you have yet to address this point.
Third, I never criticized ozma. I was pointing out that ozma’s comments seemed to lead to a radical position on abortion (the one associated with the slogan “life begins at conceptionâ€) in order to make sure that ozma actually intended those comments as written. And, for the record, I would have thought not all people in the broadly “pro-life” camp think a zygote is worth protecting.
Dave2 12.04.08 at 3:48 pm
John Protevi,
On your view of the connection between constitutional law and ethics, is there room for people who think abortion should be legal but that Roe v. Wade was wrongly decided? Or for people who think there is an individual human right to own guns for self-defense, but that the Second Amendment is about a collective right applying to state-regulated militias? Or for those American abolitionists who thought slavery was a violation of basic human rights, but condemned the U. S. Constitution as a “pact with the devil�
TruePath 12.04.08 at 4:38 pm
A couple comments on this discussion.
First of all I think many people here are falling into a standard fallacy of identifying the belief that we would be better off without people with Down’s syndrom (or who have whatever condition) or even that we would be better off aborting them with the notion that we should *treat* them in a negative, disrespectful and non-loving way given that they are here and interacting with us.
I mean the reason this confusion occurs is understandable. As human beings we tend to parse the world in terms of friends and enemies, respectful comments and disrespectful comments. Emotionally there simply is no room for the idea that “the world would be better off without you but we love and respect you and given that you are here will demand you be treated as respectfully as anyone else.” However, the sort of argument people like Singer (and me) advance isn’t meant to be understood as anything but a statement of fact and doesn’t imply all those disrespectful things these kind of value judgements carry with them in every day discussion.
———
I mean to illustrate this point let’s set aside the issue of people with disabilities and simply ask the following question: “Would it be a worse state of affairs if there were 30 billion people living on this world?” I take this answer to be unequivocally yes (too little food, wars, disease etc..). Therefore, supposing the earth was overpopulated, it would follow by definition that there were too many people on the earth. Hence, it must be the case there are some people whose existence makes the world a worse place, e.g., they simply contribute less on average to our notion of welfare than their resource use takes away.
My point is that this sort of abstract conclusion that “the world would have been better off without certain people” has almost nothing to do with the standard interpratation of statements like “the world would have been better off without you.” In every day language that means, “I think things would be better if you just disappeared right now,” but that is very very different from never having existed at all. If I hadn’t existed my friends would have had different relationships, my family would have different lives, there would be no cost from all the investments placed into my life as there would be if I was to suddenly disappear. Thus one might totally consistantly think “the world would have been better off without person X but given they exist they deserve all the respect and fair treatment that anyone else deserves.”
Since my next point is really fairly distinct I will add another comment to say it in.
TruePath 12.04.08 at 4:50 pm
Alright, now let’s move on to the really controversial stuff about whether we should abort/euthanize babies with mental handicaps or predispositions to diseases etc..
In order to give any decent answer to this one has to ask why it’s bad to kill people in the first place at all. I mean I heard a lot of criticism of philosophers up above but very few people who seemed willing to seriouslly challenge their emotional intuitions and ask if they really made sense. The only way in which this kind of moral debate/discussion even makes sense is if you are trying to come up with a coherent theory and thereby challenging yourself when various intuitions seem to contradict.
So I ask you this question (that I think someone already brought up): why is it morally bad to kill someone but not to refrain from conceiving them in the first place? One equally well removies someone from the world by simply not getting pregnant as one does by killing them so what can explain the difference?
I would argue the only really plausible consistant answer is that killing people has side effects that not conceiving them does not. If we allow people to be murdered (of any kind) we all start to fear murder. If you murder someone their family and friends grieve, people feel sympathetic and bad for them, the investment society put in them was wasted etc.. etc..
Now you might have a different answer but ‘it’s just wrong’ or ‘murder is bad’ don’t cut it. However, presumably you see why if you take my view the controversial results follow. After all what makes it bad to kill humans is exactly that we regard them as humans and they are able to fear for their future lives. In other words if we had a strong enough psychological barrier that said babies weren’t humans until their 1st birthday then that would be the time it would become immoral to kill them (of course this isn’t possible since evolution makes sure we get attached pretty quickly).
John Protevi 12.04.08 at 5:47 pm
Dave2, answering your questions in order:
1. Yes, of course. I would just ask them what they propose as an enforcement mechanism for reproductive rights to be put in place of the Roe mechanism.
2. Yes, of course. I would just ask them what they propose as an enforcement mechanism to safeguard their proposed “individual human right to own guns for self-defense” if it’s not covered by the 2nd Amendment.
3. Here I’m not sure I follow you. I would think an abolitionist would condemn the US Constitution as it stood prior to the 14th Amendment, precisely because it didn’t provide a concrete enforcement mechanism for their claim that slavery was a violation of basic human rights.
In other words, I think rights are claims on the community, and that proponents of rights owe us an explanation of how those claims are to be enforced. Otherwise it’s just too easy to propose rights, when what aggrieved people need are enforcement mechanisms.
Kathleen 12.04.08 at 5:57 pm
EK — it turns out I agree with you absolutely! :)
Sam C — the view that Singer is a really good philosopher is peculiar to me. First, utilitarianism can lead to all kinds of conclusions, including the ones that EK and I and others proposed above: inclusiveness toward people with disabilities, mental illness, whatever, actually would lead to the greatest good for the greatest number. Singer doesn’t seem to realize his framework can be turned to many ends, not just the one end he says is inevitable.
Second, to the extent that philosophers are supposed to be masters of rational argument (for better or for worse), the truth is that the real force of Singer’s position comes not from his argumentation but from the plight of tortured, suffering animals. If anyone *actually* came away from Singer’s work thinking “I used to look at photos of factory-farmed veal without flinching, but now that I understand baby cows are better than retarded people, I’m sickened and outraged!” I mean, gimme a break, honestly.
The plight of factory-farmed veal or cats required to stand on floating blocks in tubs of water until they collapse from exhaustion, etc. etc., will provoke revulsion and horror in most people (why the agents of these tortures DO NOT WANT photos published) apart from whatever philosophical argument they are tacked on to. Singer’s argument reduces to “agree with me or LOOK AT THE ELECTRODE IMPLANT MONKEY BABY YOU MONSTER”. It’s not a prize-winner in step by step rational argumentation.
There are great, great reasons for advocating the ethical treatment of animals AND for advocating inclusive social policy for people with disabilities from mild to severe to (supposedly) non-existent (everybody is going to be disabled all of the time for some purposes and at least part of the time — when they are sick or old — for most purposes). Utilitarianism can play a role in *both* cases, and so can other kinds of appeals to the head and to the heart. To the extent Singer has raised high-intellectual awareness of animal rights issues more successfully than the lady in a caftan handing out flyers at the grocery store, awesome (leaving the monstruous parts his argument aside). But he’s not a superior logician by any means and in fact the putatively rational part of his argument is the weakest part.
Mother 12.04.08 at 6:29 pm
Dave2,
I am not concerned about future generations condemning … our moral consensus is in the present. I will say that looking to the past gives immeasurable lessons moving forward. I am not interested in further pursuing your discussion about present actions being understood by moral consensus in future. I could play ring around the rosy with you for hours on this topic….but I feel that it is insignificant when discussing the expectations of abilities of children with down syndrome in today’s world. By the way, I am sure that when children were institutionalized the medical community did not worry about the future moral consensus.
And the radical position on abortion is… pro-life.
Dave2 12.04.08 at 6:33 pm
John Protevi,
The basic point is that one can (and often does) argue the merits of an ethical issue involving rights (e.g., abortion) without ever addressing constitutional law. After all, there are moral rights unprotected by the U. S. Constitution, and not every constitutional right corresponds to an actual moral right. So discussions about cognitive disabilities and abortion can and do, quite properly, proceed with complete disregard of the U. S. Constitution.
Notice that all this remains true even if you are right about the connection between rights and enforcement mechanisms. I personally suspect that you have overdrawn this connection: whether people have a certain right is surely independent of whether we’re clever enough to know how to enforce it (e.g., the right not to be raped doesn’t wax and wane with our ability to enforce it), and it is most certainly independent of how “easy” it is for someone to propose the right (whatever that might mean). But, even if you are right, it remains true that you don’t have to know a thing about the U. S. Constitution to recognize that slavery is a violation of human rights, or to engage in moral reasoning concerning cognitive disabilities and abortion.
John Protevi 12.04.08 at 6:48 pm
Dave2, I’d like to continue our conversation, but I think at this point email is probably better than this thread. You can find my email address at the top left of my blog, which you can get to by clicking on my name above. Thanks, and looking forward to hearing from you when you have time. JP
Dave2 12.04.08 at 6:54 pm
Mother,
I’m sorry, but you seem perversely committed to specious and impressionistic reasoning. Here’s an example of what I mean: “By the way, I am sure that when children were institutionalized the medical community did not worry about the future moral consensus.” This makes no sense, even as a rhetorical sally. Granted that the medical community horribly mistreated children, and granted that they didn’t worry about condemnation from future generations, nothing follows about whether we should worry about condemnation from future generations. Hitler and Stalin, as bad as they were, do not make mustaches evil, not unless we give up on actual reasoning and return to thinking with symbols and totems. And as for the original point—that the mere possibility of future condemnation means nothing—it has been buried and forgotten.
Also, if you repeatedly criticize someone, but then it turns out your criticism is based on a simple mistake of fact, it’s only polite to apologize.
Dave2 12.04.08 at 6:56 pm
John Protevi,
Fair enough. Thanks for the conversation.
wj 12.04.08 at 10:36 pm
Kathleen writes:
The plight of factory-farmed veal or cats required to stand on floating blocks in tubs of water until they collapse from exhaustion, etc. etc., will provoke revulsion and horror in most people (why the agents of these tortures DO NOT WANT photos published) apart from whatever philosophical argument they are tacked on to.
I think this is basically correct, but I worry about it for a couple of reasons. First, does seeing these pictures constitute an *argument* against the practices in question? If so, how? Second, one often hears pro-choicers rail against those anti-abortion protesters who insist upon holding up graphic pictures of mutilated fetuses outside abortion clinics. It seems fairly obvious that these pro-lifers believe that *arguments* about abortion are finally insignificant, or weak, or fatally abstract, when compared an actual documentation of what the procedure entails.
So I wonder what others think about this problem, if it is a problem at all; and whether my being puzzled about this is something I share with others.
djw 12.04.08 at 11:28 pm
serious about the real world effects of his thought
You’re kidding, right?
novakant 12.04.08 at 11:41 pm
I agree with SamC – and this whole “discussion” here has been for the most part terribly shallow.
Righteous Bubba 12.05.08 at 12:18 am
Have you bothered reading Peter Singer? I think Michael quite wonderfully points out Singer’s misconception about what is possible with kids – I cheer Michael on because of a personal interest and because it’s a great post – but Peter Singer really is good at his work and at framing his arguments. That’s not to say I can live up to his ideas or want to, but his writing has more to it than the screams of bunnies.
Kathleen 12.05.08 at 12:21 am
yes, I have read Peter Singer. I stand by my earlier point.
EK Buddenhagen 12.05.08 at 12:22 am
I agree with you, too, Kathleen.
Righteous Bubba 12.05.08 at 12:28 am
This one?
Ridiculous, but your error’s certainly less odious than Singer’s.
JAM 12.07.08 at 6:39 am
Sam C @ 65:
“JAM at 38: I’d like to see some evidence for your characterisation of Singer. I don’t recognise him at all in, for instance, ‘The bottom line is that Singer’s positions on animal suffering depend entirely on whether he perceives that such suffering can easily be leveraged to demonize other people’.”
I did offer an important bit of evidence, which you seem to have ignored. To amplify on it, the animal exploitation producing the bovine sera used in cell culture (what Singer promotes as a “nonanimal alternative”) involves direct cardiac puncture without anesthesia. The typical experiment ON an animal involves no suffering at all. Note that most of their misdirection involves clever use of prepositions to obscure what actually happens to the animals, the alleged objects of their concern.
Another example of Singer’s unethical behavior is his use of a fictional movie to represent animal research.
“More generally, I’d like to see the several people who’ve objected to Singer’s style of reasoning offer some suggestions as to how we should think about ethical dilemmas. Michael B’s combination of anti-foundationalism and close attention to factual detail is one attempt at that problem – but, as I’ve said in other comment threads, not one that I fully understand, and not one where I completely see the distinction between Michael and Singer.”
You don’t think calling something that involves direct cardiac puncture of an animal without anesthesia “nonanimal” represents a lack of attention to factual detail? What about lazy quote-mining instead of gathering actual evidence?
Here are some more lengthy critiques:
Sharon M. Russell and Charles S. Nicholl.
A Dissection of the Chapter “Tools for Research” in Peter Singer’s Animal Liberation.
Proceedings of the Society for Experimental Biology and Medicine. February 1996, Vol.211 No.2. pp.109-138
Peter Berkowitz
The utilitarian horrors of Peter Singer
Other people’s mothers
The New Republic 30 December 1999
http://www.peterberkowitz.com/otherpeoplesmothers.htm
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