Life as Jamie Knows It

by Michael Berube

  When I wrote Life as We Know It, I did not imagine that I would someday be taking Jamie to museums and concert halls. Honestly, the idea would have sounded either preposterous or pretentious. With regard to cultural institutions, Jamie did the little-kid things as well as any little kid—zoos and aquariums mostly, moving up to natural history museums when he was ten years old. But he was mostly oblivious to the appeal of so-called “high” culture: When we visited Rome in 1999, when Jamie was seven and a half, doing the tourist thing at the Colosseum and St. Peter’s and the Sistine Chapel, Jamie’s main interests were (a) pizza and (b) chasing the pigeons in St. Peter’s Square. By contrast, ten years later, when he visited Florence, he was all about going to the Uffizi (in fact, this was his idea). By that point he had developed a deep fascination with the Renaissance and could spot in an instant the difference between the bright, exuberant, religious paintings of the Italian Renaissance and the dark, secular paintings of the later Northern Renaissance. Though it took him a while to get there: he was hooked initially by the ubiquitous Madonna-and-child tableaux of the late medieval and early modern periods—but his understanding of them was a bit sketchy. At the age of fourteen or fifteen, he showed Janet’s mother, Kay, one of his books on Renaissance art, pointing to a rendering of Christ and saying, “That’s the dead guy.” Kay Lyon was horrified: “Jamie! That’s Jesus Christ!” Janet and I sheepishly admitted that we hadn’t offered Jamie much in the way of religious instruction. (I mentioned this in a talk once, and someone stormed out of the room in outrage.) So we had some explaining to do, but we were following Jamie’s lead all the way.

  His first meaningful exposure to the history of Western art and music came in seventh grade, in one of those surveys that cover “art” from ancient to modern and “music” from Gregorian chant to Stravinsky. I know that much because one night Jamie exclaimed, apropos of nothing, “Stravinsky! That’s another great composer we forgot!” This in itself constitutes a pretty powerful argument for art and music instruction in grade school, though if we Americans keep going down the path we’re on, with high-stakes testing and increasingly narrow return-on-investment conceptions of education, arts and music instruction will disappear from our schools altogether. For Jamie, art and music became two more things to be fascinated by, two more things he could learn about and experience and wonder at. We got him Fandex cards, which played right into his list-making skills, giving him an array of major composers to memorize as he wished. I used to remark that he liked talking about composers but not actually listening to their work; at the time, he was a young teen, much more into rock and pop than baroque and classical, and Janet and I have almost no classical music in our CD collections. Then one night I found some Chopin on YouTube and played it on my laptop, asking Jamie if he knew what composer this was. “Chopin,” he replied, with no more than a slight shrug of his shoulders. Now, Chopin is distinctive and identifiable to people who know about such things—at once meandering and intensely passionate—but I am no aficionado of classical music, and I had no idea that Jamie could identify Chopin by a snippet from an étude. “How about this?” I countered, putting on a recording of The Goldberg Variations (one of the few classical CDs I do own). “Bach,” he said with a nod. “Wow,” I said. Just wow.

  I suppose this would be a good place to note that there are still some doctors out there who tell pregnant women that children with Down syndrome will never have a meaningful thought in their lives. And it might be a good place to reflect for a moment on the word “retarded.” The Special Olympics has respectfully asked everyone to stop using the words “retarded” and “retard” because they (especially the latter) are so strongly associated with stigma and dehumanization. Spread the word to end the word, they say, and with every good reason. (When I have mentioned this on the Internet, I have invariably been met with howls of outrage from people complaining about political correctness. My usual response is something like “Uh, the year 1991 called. It wants its clichés back.”) But there is another, more clinical reason to reject the term “retarded,” in that it entails an inaccurate account of what “intelligence” is, by suggesting that intelligence is simply one scalar thing, a line on a graph, and that some people are higher on that line and some people lower. For the record, Jamie’s IQ is somewhere in the low sixties—or so it appeared when he was tested at the age of six. But although Jamie continues to have trouble with many areas of human endeavor, there are some areas in which he spikes up into “normal” and others in which he spikes up into “holy fucking shit.” The word “retarded,” like its more polite relative “delayed,” doesn’t begin to get at the cognitive capacities and challenges of people with intellectual disabilities. It’s really a stupid word, when you think about it.

  Some years ago, I tried a little experiment. I called it Culture Weekend. Jamie and I took a bus to New York, stayed in a friend’s apartment, and I devised a cornucopia of offerings for my then sixteen-year-old aesthete: Friday night, a visit to a midtown Brazilian churrascaria followed by games at ESPN Zone in Times Square; Saturday morning, a trip to the Metropolitan Museum of Art to check out the Rembrandt show; Saturday afternoon, down to Broadway for The Lion King; Saturday night, out to the Brooklyn Academy of Music (BAM) for Ship in a View, an experimental modern dance choreographed by Hiroshi Koike, artistic director of the troupe Pappa Tarahumara; Sunday morning, salsa music for children at Carnegie Hall. A heady and eclectic mix, I thought—and a largely spontaneous one. We got third-row seats for The Lion King because the Broadway wing of the screenwriters’ strike had just ended, and we went to see Ship in a View because I read an intriguing review of it in the New York Times that Friday morning. It was a decidedly mixed review, warning readers that “the eventually predictable alternation between such near chaos and beached calm is the central weakness of ‘Ship in a View,’ inducing a glazed-eyed state somewhere between hypnosis and boredom.” But I wanted to see how Jamie would respond.

  Jamie reminds me now that our 2007 visit to the Metropolitan Museum of Art was his first. He raced through the Rembrandts, taking them in without really looking closely, and then was hit amidships by a hall of late medieval European art, over which he lingered long, always wanting to know how old Jesus was in each painting. I made some observations to him about the emergence of one-point perspective in the early modern era and some snarky remarks about how many infant Christs had the faces of middle-aged men. On his way out, Jamie bought a book of Caravaggio’s work. Who knew that you could buy art books for under twenty dollars? Not me. Jamie has returned to the museum many times since then, always with a different aim in mind. He loved The Lion King—what kid doesn’t?—and became a Julie Taymor fan (like his parents) when he learned that the person responsible for this fabulous staging of the Disney movie was the same person responsible for the film Across the Universe, which spoke to Jamie’s advanced Beatlemania—and his love of fun. The evening’s dance at BAM was, as you might imagine, a bit too much; we both wound up in a glazed-eyed state somewhere between hypnosis and boredom. And in fact, six people walked out, two of them only minutes before the end of the piece (did they have a train to catch?). Jamie, for his part, entertained himself during the less interesting moments of Ship in a View by flipping through his Caravaggio book.

  The salsa performance the following morning was delightful, and tickets were nine dollars each. And it was in Carnegie Hall, in the basement performance space. Dancing was encouraged. A fine way to wrap up Culture Weekend!

  From that weekend on, Jamie has been a culture vulture. The Mostly Mozart show in Lincoln Center—that was his idea. The Museum of Modern Art was Janet’s idea (Jamie loved it). The New Museum of Contemporary Art was my idea (Jamie liked it). The Outsider Art Fair in New York was Janet’s idea (Jamie loved it, and I hope someday he will exhibit his work there). The IFPDA (International Fine Print Dealers Association) Print Fair in the Armory at 67th Street and Park Avenue was a friend’s idea (Jamie liked it). The Whitney Museum of Americ
an Art was his idea. We happened upon an Edward Hopper show. I pointed out a few obvious things about Hopper’s clean lines, dramatic shadows, and urban settings, and then we stumbled onto early paintings like The Bridge of Art (1907) and some renderings of the river Seine that look as if young Hopper had been taking lessons from Cézanne. “Hm. Or maybe Monet,” Jamie added, drawing startled looks from people within earshot. The Smithsonian Museum of the American Indian—also his idea (he loved it). The Guggenheim—his idea (he liked it). The Cloisters—my idea (he didn’t care for it).

  Understand, this sophisticated cosmopolite and accomplished museumgoer is also a young man who loves contemporary country music, particularly Jason Aldean and Luke Bryan, and who can sit rapt for hours in wonderment at professional wrestling. (I got him two tickets to the Jason Aldean show when it came to town in 2013, for Jamie and another country-western-loving young man with Down syndrome, and did so again in early 2016. I have not yet taken Jamie to live professional wrestling, but I will.) He is not a snob. His tastes are ecumenical, ranging from Michelangelo to thriller/action movies. He is a huge Austin Powers fan, and has had to learn for himself that there are some jokes from the Austin Powers movies that one really should not repeat in polite company. He has also become fond of a genre of music associated with black T-shirts, skulls, and iron crosses, featuring bands with names like Onslaught Apocalypse, Rivers of Blood, and Excruciating Pain. (I can’t bear to listen to it.) He just thinks that there is a great deal of stuff in the world that merits his attention, and he happens to be right about that. And because of his phenomenal cataloguing memory, he is capable of telling me (as he did in the course of talking through this chapter with me) that Caravaggio died in 1610, “very similar,” as he put it, to El Greco, who died in 1614. And he loves drawing analogies among the things he loves, whether it’s remarking that Andrea del Sarto is “very similar” to Michelangelo or observing that the young-adult SF film Divergent is “very similar” to the film version of Ender’s Game. You can see why he would be a great resource for anyone preparing to compete on Jeopardy!

  Last but not least: if you are not inclined to try to enhance your child’s cognitive capacities (regardless of where he or she might be on the spectrum of human variation) by way of travel, art, or music, I have one more card to play: an animal companion, who can provide animal companionship.

  At first blush this might not sound like the kind of thing that builds brain power in the way that travel, art, and music do. A pet seems cuddlier and cuter, not only cuddlier and cuter than teaching your kid algebra but also cuddlier and cuter than Caravaggio. But there is no question in my mind that Jamie’s animal companions—Lucy, who was with us from 1997 to 2011, and Becca, who joined us eight months after Lucy left—have enhanced his cognitive abilities. As I noted above, Lucy gave him someone to talk to, someone who never misunderstood or misheard him, and many of the first complex sentences he uttered, at the age of six, were about Lucy. Lucy was the object of Jamie’s first understanding of simile, when he grasped with delight his mother’s observation that Lucy is the color of leaves in the autumn. Likewise, when Jamie was seven and I pointed out to him (at the Detroit zoo) that some animals, like the ostrich or the human, have two legs, and some, like the camel over there, have four, he nodded and added, “Like Lucy.”

  Lucy was a present for Jamie’s sixth birthday, a clever mutt from the pound whose previous family was apparently horrific enough to have shot a BB pellet into her back. She knew immediately that there was something special about Jamie, and Jamie became almost preternaturally attentive to her moods and desires. For as long as I have memories, I will never forget the night Jamie and I were doing his homework for seventh-grade science class, going over the components of the gastrointestinal tract, when we came to the pancreas. “We can skip this one,” I said to him, “you don’t know the pancreas.” His teacher, Ms. Pelligrini, had told us that Jamie would only have to know most of the GI tract, not the whole thing. But Jamie immediately retorted, “Lucy had pancreatitis and cannot eat human food.” OK. Point made. You do know about the pancreas.

  And then there was the conversation Jamie and I had one lazy weekend as I was sitting around reading Alasdair MacIntyre’s book Dependent Rational Animals. I had just come upon a passage in which MacIntyre takes Martin Heidegger to task for distinguishing humans from animals by putting one big opposable thumb on the scales, insofar as Heidegger justifies the distinction by emphasizing “lower” animals whose cognitive capacities are not remotely comparable with our own:

  A domesticated dog does appear early in [Heidegger’s] discussion, but thereafter we find a welcome variety of bees, moths, freshwater crabs, lizards, sea-urchins, woodworms, and woodpeckers. . . . What we do not find are wolves or elephants or, even more importantly, gorillas or chimpanzees or dolphins.

  The larger argument at stake here is that our attempts to distinguish humans from other animals on the basis of our superior cognitive abilities have become increasingly suspect: We are not the only species to use tools. We are not the only species to punish social cheaters. We are not the only species to use language. I sometimes try to sum up the situation by saying that there is no study of animal cognition, at any point in the last five hundred years, whose results could be summed up by the headline “Animals: Dumber Than We Thought.” The research has uniformly gone in the other direction.

  So I put down MacIntyre’s book and asked Jamie, who happened to be watching the Animal Planet channel at the time, “Can animals think? Some people say yes and some people say no. What do you say?”

  For Jamie, this was (so to speak) a no-brainer, because Lucy was clearly among the very smartest dogs on the planet, capable not only of determining when a family member is ill but also of reading highway signs (Exit 242! This is where we stop for bathroom break! Yay!) and of knowing where she is by using elementary canine calculus to fix her position in the hemisphere.

  So we talked for a bit about how Lucy can be happy or excited or worried (about the thunder, because she does not understand about weather) or sad (when she sees a suitcase), and about how some animals have brains that are very complicated but others have brains that are very simple. “Sharks,” Jamie did not fail to say, “are one of the best predators.”

  “True enough,” I said. “Animals can be very clever about finding food. And they can have feelings, like sadness or happiness. And complicated animals like dogs and horses can even understand humans, too.”

  “Or chimpanzees,” Jamie added. “Or gorillas, like Koko. Or dolphins.” Here Jamie did his dead-on imitation of dolphin clicking. And being disability-aware, he is fascinated that Koko learned sign language.

  “But, of course, animals do not speak human language,” I added.

  Quick as a flash, Jamie replied, “Parrots.”

  “Right, parrots. Good one. And, of course, dolphins and whales can talk to each other in dolphin and whale language. So we know that animals can understand things, can talk to each other, and can figure out how to find food even when it is very difficult. But do they have thoughts about these things? Do you think Lucy can sit down and say, ‘Hey, maybe I shouldn’t be so worried about the thunder’? You remember when you were sad, and you thought about it, and we talked about what it is like to be sad. Do you think a dog can do that?”

  Jamie mulled this over for a few seconds.

  “Well . . . you can train,” he said.

  I thought (and still think) that was a brilliant response. What Jamie meant, I learned, was that animals must be capable of some form of thought if they can be trained. Lucy, for example, must have some reflective relation to her bodily functions in order to learn not to urinate and defecate in the house. (We talked for a bit about the rule, in the film Babe, that ducks and pigs are not allowed in the house.) But the fact that you can train an animal with operant conditioning isn’t necessarily evidence that the animal has become, how should we say, thoughtful. I myself trained a white rat to respond to a variety
of feeding schedules (fixed-ratio, fixed-interval, variable-ratio, variable-interval) in college. But the more radical implication of Jamie’s remark—that you can train an animal to think—is really interesting. Indeed, it echoes an important passage in J. M. Coetzee’s novel Elizabeth Costello (a passage important enough to quote at length):

  Sultan [a chimpanzee] is alone in his pen. He is hungry: the food that used to arrive regularly has unaccountably ceased coming.

  The man who used to feed him and has now stopped feeding him stretches a wire over the pen three metres above ground level, and hangs a bunch of bananas from it. Into the pen he drags three wooden crates. Then he disappears, closing the gate behind him, though he is still somewhere in the vicinity, since one can smell him.

  Sultan knows: Now one is supposed to think. That is what the bananas up there are about. The bananas are there to make one think, to spur one to the limits of one’s thinking. But what must one think? One thinks: Why is he starving me? One thinks: What have I done? Why has he stopped liking me? One thinks: Why does he not want these crates any more? But none of these is the right thought. Even a more complicated thought—for instance: What is wrong with him, what misconception does he have of me, that leads him to believe it is easier for me to reach a banana hanging from a wire than to pick up a banana from the floor?—is wrong. The right thought to think is: How does one use the crates to reach the bananas?