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, Whoa! Check it out! Somebody responded to something I wrote! and d00d! Twenty thousand readers in one month! Inconceivable! This Inter-net is an amazing thing! 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 The Onion in Our Dumb Century. 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 Our Dumb Century’s “auto-mobile,” and . . . oh, never mind.
The point is that sometimes, the internet really is an amazing thing, in which you write a blog post 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 SUNY – Stony Brook Cognitive Disability conference. 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 wrong about Down syndrome, whereas in fact it takes more than a couple of exceptional children here and there to challenge the general rule. After all, the passage speaks of expectations, and although people do win the lottery now and again, it would be unreasonable to buy a lottery ticket and expect to win. Professor Singer then asked me to direct him to some evidence that would indicate that Jamie is not anomalous—and, he said, this is not an idle challenge: if he is mistaken about Down syndrome, he will correct himself in the future.
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; Broadway Danny Rose is a wonderful piece of work, and I’m fond of Bullets Over Broadway as well. But I do think “we cannot expect a child with Down syndrome to chat with us about the latest Woody Allen film” instates a distinctly Upper West Side-y performance criterion, and is worth critiquing on those grounds alone. More seriously, I note that in the 1920s we were told that people with Down syndrome were incapable of learning to speak; in the 1970s, we were told that people with Down syndrome were incapable of learning how to read. OK, so now the rationale for seeing these people as somewhat less than human is their likely comprehension of Woody Allen films. Twenty years from now we’ll be hearing “sure, they get Woody Allen, but only his early comedies—they completely fail to appreciate the breakthrough of Interiors.” Surely you understand my sense that the goalposts are being moved around here in a rather arbitrary fashion.
I do appreciate the fact that you’re not issuing an idle challenge. I don’t think you would do that. I have three responses to it.
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 will not be able 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 any person with Down syndrome who demonstrates one of the abilities you say we cannot 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 cannot (I use the term advisedly) know what to expect of children with Down syndrome. Early-intervention programs have made such dramatic differences in their lives over the past few decades that we simply do not know what the range of functioning looks like, and therefore do not rightly know what to expect. That, Professor Singer, is the real challenge of being a parent of a child with Down syndrome: it’s not just a matter of contesting other people’s low expectations of your child, it’s a matter of recalibrating your own expectations time and time again—and not only for your own child, but for Down syndrome itself. I’ll never forget the first time I saw a young man with Down syndrome playing the violin—quite competently, at that, with delicacy and a sense of nuance. I thought I was seeing a griffin. And who could have imagined, just forty or fifty years ago, that the children we were institutionalizing and leaving to rot could in fact grow up to become actors? Likewise, this past summer when I remarked to Jamie that time is so strange that nobody really understands it, that we can’t touch it or see it even though we watch the passing of every day, and that it only goes forward like an arrow, and Jamie replied, “except with Hermione’s Time-Turner in Harry Potter,” I was so stunned I nearly crashed the car. I take issue with your passage, then, not because I’m a sentimental fool or because I believe that one child’s surprising accomplishments suffice to win the argument, but because as we learn more about Down syndrome, we honestly—if paradoxically—don’t know what constitutes a “reasonable expectation” for a person with Down syndrome.
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, the Riverbend Dpwn Syndrome Parent Support Group is an amazing resource for everything from research on language and math skills of people with DS. Finally, there’s the book Count Us In 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:
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.
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,
* Just for the record, for people unfamiliar with things I’ve written on these subjects: my position on prenatal testing and selective abortion is here, my position on liberalism and selective abortion and l’affaire Schiavo is here and here, and Janet and I weighed in on the Schiavo debate here.
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 Ophelia Benson pointed out 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 my place.