Last month, Richard Dawkins offered this tweet about a hypothetical fetus with Down syndrome: "Abort it and try again. It would be immoral to bring it into the world if you have the choice."
If nothing else, Dawkins’ view was clear. But there is Zen clarity and Molotov clarity, and Dawkins’ tweet — with its flammable mix of abortion, God, atheism, disability, pregnancy and uncompromising moral judgment — leaned toward the latter. The resulting online firestorm, with extra gasoline subsequently ladled out by Dawkins himself (including an apology later featured on a blog called Terrible Apologies), is still smoldering.
Bioethicists have analyzed Dawkins’ logic (gappy), and Down syndrome researchers have examined the empirical basis for his views (thin to none). So we can now move on. Yes?
Well, for parents like me (my younger daughter, Laura, has Down syndrome), this stuff never really goes away. As a social media event, the Dawkins kerfuffle was fleeting, soon replaced by celebrity nudes; as a conversation, though, it offers a glimpse of a larger question: How do “we” — that is, the non-disabled — think about people with intellectual disabilities?
It’s a truism that non disabled people have a hard time imagining people with disabilities, believing their lives to be worse than they actually are. But Down syndrome adds further complexity: It is common enough to be known, it is instantly recognizable to most, and it is not only genetic, but can be tested for in utero. The result of all this is that conversations about Down syndrome tend to be about many things at once, and the people tend to get lost — or, in the service of argument, to be imagined in ways that are deeply flawed.
I want to talk a little bit about those flaws and where they come from, and to do so, I have to discuss a recent skit from "The Tonight Show," involving the Seattle Mariners’ star second baseman, Robinson Cano.
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Last year, Cano left the Yankees for the Seattle Mariners. On the day of the "Tonight Show" skit, he returned to New York as a Mariner for the first time. To honor the occasion, Jimmy Fallon set up a larger-than-life cardboard image of Robinson Cano in a Mariners uniform, and invited passing Yankees fans to boo. They did this with great enthusiasm — until Robinson Cano, the actual person, would step out from behind the cardboard. At that point, the booer, after a second of shock, would happily welcome Cano back to New York.
As a parent, as a writer, that sums up my experience of Down syndrome in the world. As an abstraction, a cardboard figure, people behave negatively. In person, people are charmed.
When parents sent pictures to Richard Dawkins, or talked about how much their children meant to them and their families, that was a way of having the person step out from behind the cardboard. They were not just saying their kids brought them happiness; they were saying that their kids were real.
There are several dangers in this approach, however. (I say this not to criticize the parents: I’ve written a book about Laura, where I told lots of stories. It’s more that every narrative choice has dangers, and discussions of disability are particularly fraught.) The first is that doing so may feed the stereotype that people with Down syndrome are sweet, and that their individual identities are simply functions of the group. I’ve met many people with Down syndrome, and I know some of them well, and though I can be cranky and judgmental, I haven’t yet met someone with Down syndrome I dislike. That said, I also think it’s wrong to ascribe special qualities of personality to members of that group, even good ones, because doing so obscures the individuality that is there — and that we assume for ourselves.
The second danger is that it may feed into the belief that people with Down syndrome have to have special qualities in the first place: that if they fail at their duty to contribute, they then have a duty to inspire. There’s a rough arithmetic here, implicit in Dawkins’ idea that people with Down syndrome subtract from “the sum of happiness.” That arithmetic — as well as Dawkins’ implication that people with Down syndrome, in contrast to those with autism, do not, cannot, “contribute” — is undergirded by a toxic assumption: that people with Down syndrome matter because they affect us in one way or another, and not because they are citizens with interests of their own.
When the discussion is framed by abortion, it is easy to forget this. These are extraordinarily difficult issues; indeed, what’s most offensive about Dawkins’ various statements is his insistence that the answers are logical and obvious. But speaking for myself, I have no interest in passing judgment on any woman’s individual decision to terminate, whether for a prenatally diagnosed condition or another reason. That’s her business, and her choice, and it’s in the charmed circle of decision.
What matters to me, as someone who would like to live in a world where any child will be equally welcomed and have the chance to flourish, is the climate of assumption that surrounds the choice. What do we think about people who differ from the norm, whatever that is? What will we do as our ability to predict other conditions increases? Who else will have to audition to be born?
I don’t know. I don’t have easy answers, because there aren’t any. But I do think we need to recognize the depth and longevity of our misconceptions. To do so, we need to talk about John Langdon Down.
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I was obsessed with John Langdon Down for a long time. I wrote a book about Laura, and Down, the first to name the syndrome for Western medicine, was a big part of it. Way too big. Many pages were cut, as I discovered that most people were less interested in 19th century Victorian asylums than I was.
Still, Down was a fascinating figure. He rose from obscurity (son of an alcoholic pharmacist) to wealth and fame. He coined the first diagnostic name for Down syndrome: “Mongolian idiocy,” a hall-of-mirrors phrase that reads disability through race and race through disability. It was scientific nonsense — people with Down syndrome had not, as Down thought, “degenerated” in the womb, dropping down a hierarchy of races from Caucasian to Mongolian — but the name stuck for decades. This was personal for me, not just because my daughter has Down syndrome, but because my mom is Japanese. So I got interested. The whole thing became a giant puzzle to solve.
As I discovered late in the writing of my book, Down was a plagiarist. The paper that made his reputation, the one in which he announced the discovery of “Mongolian idiocy,” also claimed that there were ethnic types of every kind of “idiocy” (yes, that was the diagnostic term then): “Negroid,” “American,” “Malay.” Though Down was an avid photographer, and photos remain of his patients with trisomy 21, there are no pictures of the other alleged ethnic types, likely because the children didn’t exist.
Down’s descriptions of those other “idiots,” though purportedly based on life, were taken nearly word for word from a decades-old treatise on human races. The treatise, by one Johann Friedrich von Blumenbach, was decades old, but it had been recently translated by a colleague of Down’s, Thomas Bendyshe; that book was in Down’s personal library. Down simply imported the language of the translation into his paper, using it to claim the existence of ethnic types: hence the title of his paper, “Observations on an Ethnic Classification of Idiots.”
But Down’s description of the Mongolian type feels different. It’s not just that it’s longer, or that it makes up the bulk of the paper. It’s that it feels true to life — or that, enmeshed in an ordinary racism, and a medical iteration of symptoms, there are splinters of lived reality. For all of Down’s flaws, his observations, in the “Mongolian” case, were based on direct contact with the people he talked about, and so they had a firmer foundation than rumor, prejudice or secondhand research.
Down also cared about his patients. Following the work of continental pioneers in the treatment of “idiocy,” Édouard Séguin among them, Down believed that humane treatment was mandatory, and that teaching was possible. So even as Down dehumanized his patients with a label, he also elevated them in person. Though O. Connor Ward’s biography borders on hagiography, it nonetheless documents Down’s caring side: He banned corporal punishment, discarded tin plates and replaced them with china, invented therapies to help people speak more clearly. The second asylum he ran (Normansfield) had a theater, where residents put on plays.
Down, in other words, understood — indeed, created — the cardboard figure of idiocy that still holds today. At the same time, he had experience with the three-dimensional reality that stood waiting behind.
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Call it science fiction, but I like to imagine an alternate outcome to the Dawkins kerfuffle, a universe where Richard Dawkins responded differently to the question. It may be because I’m now reading Philip K. Dick, or it may be because, as a parent, I’m always trying to imagine a world where Laura belongs. In my more extravagant daydreams, it is a world where people with disabilities are neither leveraged to make a point, nor the targets of free-floating discontent; in which they are seen as ordinary individuals and a part of human diversity; in which one disability, like autism, is not used to beat another, like Down syndrome, but instead people with those conditions are seen as having common interests.
I don’t expect this Holy Grail of the Ordinary to arrive any time soon. But it might help if the most prominent public scientists and intellectuals took a firm stand for people with disabilities — or, at least, not a stand against them, in the name of an ill-defined, impossible-to-calculate “sum of happiness.”
So, a thought experiment: What if, on Aug. 20, 2014, when InYourFaceNewYorker tweeted, “I honestly don't know what I would do if I were pregnant with a kid with Down Syndrome. Real ethical dilemma,” Dawkins had tweeted something else?
Hard choice! Between woman and doctor.
Am not gen. counselor, shd probably not advise.
Wait a few days whilst I meet some actual persons w/Trisomy 21. Will try to keep an open mind! More soon!#somuchtolearn
Do not possess uterus. Must tread carefully!#willneverbemyproblem
Or, in the time-honored procedure of writers everywhere, Dawkins could have jotted down some notes in pencil, then let them sit for a day. If his ideas seemed thoughtless or offensive, he could have wadded up the paper and thrown it out. Or, for extra points, recycled. To wit:
Has anyone written on this topic? Must investigate.
Trisomy 21 = 200+ genes overexpressed, worldwide DS pop. = 6 million. Wonder if this group varies?#dangerous2generalize
Current data on family outcomes? Should read before opining.
Disability=suffering: Always true? Suffering's true cause poss. prejudice, not biology?
"Contribute," “happiness”: how to quantify?#beyondarithmetic
Disability studies--anything I should know?