Life as Jamie Knows It

by Michael Berube

  For the claim that liberals are all about eliminating Down syndrome from the population is a popular meme among the conservative punditocracy, as well. Michael Barone covered himself in glory in 2008 when he remarked, “The liberal media attacked Sarah Palin because she did not abort her Down syndrome baby. They wanted her to kill that child. . . . I’m talking about my media colleagues with whom I’ve worked for 35 years.” Barone later apologized, saying he “was attempting to be humorous and . . . went over the line.” (Which is totally understandable, because that joke could have been really funny with the right delivery.) In more decorous language, every few years Washington Post columnist George F. Will writes a touching column about his son Jon, who has Down syndrome and a deep love of baseball to rival his father’s; but I have yet to see a column on Jon Will that does not take a swipe at pro-choice liberals who are allegedly responsible for some kind of “moral regression.” The reason people abort fetuses with Down syndrome upon receiving a “positive” result from amniocentesis, according to Will, isn’t that they are making difficult moral choices for themselves and their families; it’s all due to “baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby.”

  It’s an interesting turn of phrase, that bit about “nature’s mishaps.” But for some reason it applies only to mishaps in utero. After you’re born, health care and health insurance is a personal matter, and your encounters with nature’s mishaps are nobody’s business but yours. That’s why you haven’t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known in some quarters as “Obamacare,” prohibits insurance companies from denying coverage to disabled children under nineteen. Or that, as of 2014, the law has prevented insurers from excluding anyone from coverage on the grounds of disability.

  As I explained in Life as We Know It, Janet and I didn’t want an amniocentesis in 1991, when she was pregnant with Jamie, partly because we knew that it induces miscarriage once in every two hundred procedures and partly because we didn’t think Down syndrome was worth screening for. (We still think that, and I’ll say more about why in the final chapter.) So, in the intervening twenty years, we’ve tried to persuade people that prenatal screening isn’t all it’s cracked up to be: it certainly won’t guarantee you a perfect baby, since it doesn’t detect autism or cerebral palsy or just plain cussedness. We’ve tried to make the case that people who want prenatal screening should have access to it—but that the medical profession shouldn’t oversell it, let alone recommend it across the board. Most of all, we’ve tried to argue that if you want prospective parents to go ahead and raise children with significant disabilities, you should promote that agenda by way of persuasion rather than state coercion. And finally—this should go without saying, but it never does—you should be prepared to support the social-welfare programs those children will need as they grow.

  In 1996 Tucker Carlson wrote an essay on prenatal screening and Down syndrome for the Weekly Standard titled “Eugenics, American Style.” In 2012, in the wake of then presidential candidate Rick Santorum’s remarks about how liberals hate and kill babies with disabilities, the online magazine Slate republished Carlson’s piece, calling it a “classic,” “powerful” essay. There is no accounting for taste, I suppose. I found Carlson’s essay intellectually dishonest in 1996, and I haven’t changed my mind since. Carlson writes:

  It would be unfair to single out organized Down Syndrome groups for their unwillingness to confront the subject of abortion, since the willful blindness runs much deeper. In Life as We Know It, his recent book about raising a son with Down Syndrome, Michael Berube describes the typical response on an Internet discussion group when the subject of prenatal testing and abortion arises: “Every time someone brings up the question on the listserv, he or she is met with dozens of e-mail responses reading, ‘NO! NO! NOT ON THIS LIST! Please don’t have this discussion here! There are plenty of other newsgroups for this debate. This is about children with disabilities.’”

  Why do I call this piece intellectually dishonest? I don’t toss around that phrase lightly. But here Carlson speaks of “willful blindness” to the ethics of abortion by citing a passage from my book—a passage that is immediately followed by fourteen thousand words on the subject of selective abortion for fetuses with disabilities. (Yes, fourteen thousand. I went back and counted.) The whole point of that chapter, “Humans Under Construction,” is that we absolutely have to confront those questions, difficult and wrenching though they be. And yet Carlson’s pretense here—echoed since by Will, Barone, Santorum, Palin, and a cast of thousands—is that liberals don’t debate these things, that we don’t agonize over whether to bring children into the world. But of course we do. And some of us see disability as something intrinsic to the human condition, something ineradicable and ineluctable. In fact, some of us think that an awareness of the ineluctability of disability should inform our discussions of health care and national policy. Because otherwise we would wind up with a world in which people debate issues of public health without thinking how those issues are shaped by disability, and a world where people talk about disability only until certain fetuses with disabilities are brought to term, as if the social contract need not accommodate them after they are born. And that kind of world wouldn’t make any damn sense whatsoever.

  So the next time we talk about health care in the United States—which should be today, tomorrow, and every day thereafter—we should take a moment to think of people like Jamie and of all the people who have helped him along the way. Jamie has needed some help in order to reach the point at which his parents can start granting him more autonomy; he has not needed as much help as we’d expected or feared, and certainly not as much as many other young adults, with or without disabilities. And of course, we all need some degree of help in order to become independent: that’s one of the paradoxes by which we live. But in Jamie’s case, dear reader, if you are one of our fellow Americans, then some of that help was provided by you. You should be proud of that, and you should know that Jamie and his family are ready and willing to return the favor, should any of nature’s mishaps happen to you.

  Brainstorming

  In 2011, in his senior year of high school, Jamie wrote a short essay with the help of his teachers and aides. Note that it includes the trip-to-Dublin saga and the story of the Cambodian restaurant in Pittsburgh:

  I believe traveling is my very favorite thing in the world. When you travel, you have to make plans. You go to many places. You can go to other states or even countries. You need a passport to enter another country.

  When I travel with my father, he takes me to many different states. We have good father and son times. We go to water parks, museums, concerts, plays, zoos, aquariums, basketball, baseball, and even hockey games.

  We go to restaurants and diners of all kinds to try new foods—like Myanmar food in New York, and Cambodian food in Pittsburgh!

  We have even gone on wildlife safaris in Canada and caves in Texas.

  One summer I went to Dublin, Ireland when my mother taught in Ireland with Penn State students. My father and I left on the night of the Fourth of July and took an overnight flight. When we arrived the next morning, I went with my father to the baggage claim in the airport. It was early, around 7:00. I was really thirsty, but I saw there was no juice, no lemonade, and even no water. But I noticed there was Coca-Cola, and my father let me buy one. So that was the day I had Coke for breakfast!

  I have gone to France two times, in 2004 and 2006. I have been to the Eiffel Tower and Notre Dame and the Louvre. I also went to Monaco to see sharks in a big aquarium named after Jacques Cousteau. My favorite place I have gone to is San Antonio, Texas. But I like traveling everywhere with my mother and father. And sometimes with my brother.

  I think people should go traveling because they can see different places and meet different people. They will have a great time and their
memories will last a life time. I believe traveling is great for my heart and my brain, and I learn so much every time I travel.

  I began traveling in earnest with Jamie in the summer of 2003, when he was eleven. It was the first summer that Janet taught in Penn State’s summer Ireland program, and Janet initially assumed that Jamie and I would accompany her for the month. This was, unfortunately for all concerned, a thoroughly unrealistic expectation. At that age, Jamie was not capable of entertaining himself for hours on end with atlases, DVDs, his iPod, and the Internet, and I could not imagine how I was going to keep him occupied all day every day when the Ireland program got to the wild rural areas of Allihies and the Beara Peninsula.

  So I came up with another plan. Jamie would stay in the Y summer camp, and every weekend while Janet was gone, he and I would take a weekend trip. Overnight in Pittsburgh (zoo, baseball), overnight in New York (at a friend’s house in Brooklyn), overnight in Ocean City, Maryland (at a friend’s timeshare). In those days, Jamie was invariably awake at the crack of dawn, which meant (since he could not be left alone for long periods of time) that his bleary, night-owl father would also have to be up at the crack of dawn. And we would learn, by trial and error, how to travel together.

  I liked this plan for three reasons. One, it allowed me to travel with Jamie; that much should be obvious. Two, it would come in handy for some of my professional travels. I travel for business five or six times a semester, mostly but not exclusively for speaking engagements, and I didn’t want Janet to have to hold down the single-parent fort every time I had an out-of-town gig. At first this arrangement required me to pay local students to watch over Jamie while I did my meeting-and-speaking business, but within a few years, Jamie became capable of sitting through my lectures and even visiting classes with me. (He now regularly contributes to my class visits on various campuses, if the classes involve disability issues or discussions of Life as We Know It.) And three, it would enhance Jamie’s sense of the world—and, I hoped, his ability to tell his own stories. The first time I ever heard him describe his travels, he was telling his mother (still in Ireland) about our trip to Ocean City. “We went to a waterpark,” he said into the phone. “All the girls screamed.” This was Jamie’s truncated way of saying that every time this enormous barrel of water tipped over and drenched everyone underneath it, there was much adolescent-girl shrieking to be heard. By itself, it’s not much of a story, but I had never heard Jamie try to narrate his experiences before. (Janet disagrees, insisting that “we went to a waterpark / all the girls screamed” is a perfect short story, with all the precision of a haiku or an Imagist poem.) And travel, I thought, always provides a ready-made framework for narrative: first we went here and did that, then we went there and did that. Sure enough, the more Jamie traveled, the more adept he became at talking about his travels—to the point at which he was able to write, at the age of twenty and with a teacher’s editorial help, a short essay about his travels.

  Along the way, Jamie and I have had some epic journeys that produced epic tales. OK, not literally. But whenever I could bring him along on a business trip, I did—and that is how we came to be in the Omaha zoo on a November afternoon, the only people in the place on a 35-degree day, with the sea lions staring at us and nudging each other, Look at the crazy humans in the cold. They have no food for us—what are they doing here? That is how we wound up in a funky roadside attraction in Cerrillos, New Mexico—the Casa Grande Trading Post, Turquoise Mining Museum and Petting Zoo, where Jamie fed the llamas and asked if he could buy an antelope skull to give to his French teacher, Madame Eid. I said no to the skull, fearing that it would be damaged in transit on the way home. But how cool is it that Jamie saw an antelope skull and thought, Hey, that would make a great gift!? (My refusal to let Jamie give his French teacher an antelope skull from New Mexico is now one of the minor regrets of my life.) And that is how we wound up in the African Lion Safari in Hamilton, Ontario (yes, you read that right—it is the “wildlife safari in Canada” Jamie mentioned in his essay), one day after the Canadian Down Syndrome Society conference, at which we were wisely advised not to drive our rental car into the safari lands because the baboons would strip it of every piece of rubber they could pry off the car.

  I have already told the Vancouver story. Here I’ll share the Las Vegas story, partly because it was not a business trip; it was pure vacation, a reward to Jamie for being so helpful after his mother had neck surgery. That surgery, in late August 2007, involved fusion of vertebrae C3 through C5 to stabilize Janet’s spine where it had come so perilously close to the spinal cord that the doctors were using phrases like “imminent danger of paralysis.” The surgery had been spectacularly successful, leaving barely a scar (Janet’s surgeon, James Fick, also a parent of a child with Down syndrome, called me three times during the procedure to update me on its progress), but the aftermath was rocky, because Janet is susceptible to migraines and you can’t take ibuprofen after this kind of spinal surgery because it inhibits bone fusion. Knowing this, the Furies whose spirits take the form of migraines descended upon Janet with a vengeance, twice sending her (and her worried husband) to the ER. Through all this, Jamie was always patient and solicitous—and, just as important, willing to be dropped off at a friend’s house at a moment’s notice.

  Within a month of the surgery, we all went to see Cirque du Soleil’s Saltimbanco show at the Bryce Jordan Center in State College. Janet reported that the incredible acrobatics made her neck hurt in sympathy—and Jamie fell in love with Cirque du Soleil. He had never wanted to go to the circus as a child: a good instinct, that, because those “circuses” are so often utterly miserable affairs featuring mistreated elephants and assorted sad animals. Cirque du Soleil, however, had somehow managed to save the circus from itself, devoting its repertoire entirely to human feats of skill, athleticism, and derring-do, eschewing the sad animals altogether. Right around that time, a family friend gave Jamie a copy of the Beatles’ Love CD, the acclaimed collection of mashups and remixes that formed the soundtrack of the equally acclaimed Cirque du Soleil tribute to the Beatles. Well, when Jamie heard that CD, and heard that there was a Cirque du Soleil show devoted to the Beatles, his head practically asploded. “They could come here!” he exclaimed. I checked it out online. No, it did not seem that the Love show was a traveling show—it was strictly a Vegas operation, with highly elaborate sets that could not easily be moved around the country. Ever the optimist, Jamie suggested that someday we might go to Las Vegas. I said I would look into it.

  Airfare, hotel, tickets—it all came to just over two thousand dollars. “I’m sorry, Jamie, it’s just too expensive,” I told him. He took this in for a moment and then came back with, “Maybe if we try Motel 6.”

  I laughed out loud. “That is such a great idea! Jamie, where did you hear about Motel 6?”

  “On TV,” he replied. But of course. Motel 6—they’ll leave the light on. It was a very clever suggestion, but I explained to him that if we went to Vegas, we were going to stay in a “nicer” hotel. I didn’t say more than that, and I didn’t explain why one should avoid discount hotels in Vegas, though by the end of this story, you’ll find that I did have to give Jamie some general idea of what Las Vegas can be like.

  A few months later, I came upon a package deal that made the trip plausible. Jamie was thrilled. Planet Hollywood! An outdoor pool! Tickets to Cirque du Soleil and front-row tickets to Stomp! A tour of the Hoover Dam! This was going to be awesome. We circled the dates: three days in late June, 2008.

  Except that when we arrived, somewhere ‘round midnight, we found that everyone else on our plane had gotten the same package (or something similar), so that the rental car plaza consisted of ten or twelve counters, only one of which featured a line of over fifty people. That was our line, of course. I was tired, and I knew our hotel was only a ten-minute cab ride away, so I suggested to Jamie that we take a cab to the hotel and come back in the morning to get our car.

  “Michael!
We have to get our car right now,” he replied. “We have no other options.”

  I smiled indulgently. “We certainly have other options, Jamie. For example, we can get a cab tonight and come back and get our car tomorrow. That is totally another option.”

  No dice. He was determined to stick it out and get our car that night. At which point a pleasant young woman in front of us turned and said, “I’ve been on this line before—it’s not that bad. Probably half an hour?”

  I put it to Jamie: “OK, Jamie, is that all right with you? We wait on this line for half an hour?”

  “We have no other options,” he insisted. The pleasant young woman laughed pleasantly.

  So I decided to spend some of that time—it wound up being forty-five minutes—explaining to Jamie what kind of world we would be walking into. “You have never seen hotels like these,” I told him. “They are huge. You must stay by me—because if we get separated in one of these places, I just don’t know how we would ever find each other again. OK?”

  Jamie nodded seriously.

  “Now, these aren’t just hotels. They’re also casinos, and they have restaurants and theaters and shopping malls. Seriously, they are enormous. There’s a hotel designed like Venice in Italy, and a hotel designed like New York, and a hotel designed like ancient Egypt, and a hotel designed like ancient Rome that even has people walking around dressed like ancient Romans, OK?”