Life as Jamie Knows It

by Michael Berube

  Jamie was getting into this. “And people dressed like Christians!” he added, at which the young woman in front of us burst into delighted laughter. It was a pretty good line, and we have repeated it often.

  But it was outdone later that evening, after we checked in to Planet Hollywood and found ourselves walking through the casino on the way to the elevators. “Jamie,” I asked, “tomorrow night, would you mind if I came down and played roulette for a little while after you fall asleep?”

  I was not prepared for his answer. Loudly and indignantly, he cried, “Michael!! Don’t you dare gamble!!”

  Well, that was awkward. To everyone within earshot, it must have sounded, from his tone to his use of my first name, as if he had been abducted by his creepy uncle with a gambling problem. I assured him, quietly, that it was no big deal and that I would not be gone long and would not lose a lot of money. Playing for about an hour each evening, I won seventy dollars the first night and dutifully lost it back the second night, which is only right and just, and Jamie slept soundly throughout.

  He loved both shows. He was beside himself at Love and insisted that we return to the Mirage hotel the next day to buy a program and some merchandise. But he had a great deal of trouble getting around in Las Vegas, and at first I could not understand why. He was dragging, he was irritable, he was fussy—he was a pain, honestly, and he was not himself. “If you keep this up,” I warned him at one point, “it’s the McDonald’s kids’ meal for you.” We were not going to McDonald’s—we had very good Mexican food in our hotel—but he got the point. He was acting immaturely, and since this was his big extravagant Vegas vacation, his reward for being so good with Janet the previous fall, I was vexed. I imagine that many people act immaturely on their big extravagant Vegas vacations. But I expected better from Jamie.

  I finally realized that he was dehydrated. The brutal desert sun, beating down on us in the deepest days of June, was almost visibly draining moisture from his body. I have a picture of Jamie at the Hoover Dam, looking utterly depleted in 118-degree heat; he had never experienced such a thing (I had been to Vegas once, eight years earlier, speaking at UNLV), and it was rendering him incapable of enjoying himself whenever he was outside. Fie on me for taking a full day to see the obvious, but once I did, I hustled Jamie into the nearest CVS and bought him a couple of Gatorades.

  He revived almost instantaneously, and I cursed my cluelessness. I suggested we return to our hotel and take a dip in the pool, Gatorades at the ready. He agreed—and as we emerged onto the strip, a moving billboard drove by us, its ad promising that you could have babes in your room within twenty minutes.

  This struck Jamie as hilarious. “Babies in your room?” he cried incredulously, and when you put it that way, yes, it does sound pretty funny.

  I could have let it go. As it stood, we had ourselves a Cute Kid Moment, and there was no need for me to tell Jamie that he had misread the billboard or explain to him what a more accurate reading of it might entail. But I thought to myself, goddamn, he’s almost seventeen. I owe him an account of this aspect of Las Vegas.

  So I turned to him and said, “Well, Jamie, that sign didn’t say ‘babies.’ It said ‘babes.’ Babes in your room in twenty minutes.”

  This was just as puzzling to him. “Babes in your room?” Jamie asked, as if there were no significant difference between babies and babes.

  “OK, it’s like this,” I said. “You know how some people, like us, come to Las Vegas for the shows.” Jamie nodded. “You know that some people come here to gamble, even though you did not want me to gamble.” Jamie nodded again, smiling wryly. “And then there are men who come here for sex, and they pay to have women come to their rooms.” I said it just like that, matter-of-factly, as if it were simply a matter of choosing among options A, B, and C.

  Jamie furrowed his brow and nodded slowly, seriously. Did he get it? Reader, he got it. All the way back to our hotel, as hawkers of strip clubs and “escort” services tried to give us cards for their businesses, Jamie held up one hand and said, “Not for us, not for us.”

  I don’t think I have ever felt a stranger combination of pride and amusement.

  When Jamie and I visited the College of Charleston in September 2011, we did so at the invitation of Alison Piepmeier, herself a mother of a young girl with Down syndrome (Maybelle by name). I knew Alison as a thoughtful and passionate writer in the feminist blogosphere; I now know her also as a searingly honest chronicler of her own battles with brain tumors and seizure disorders. And she was the first person to insist that if I were going to give a talk about Jamie, that Jamie himself should deliver part of it. I eagerly agreed, and Jamie, Janet, and I set about practicing his speech, which consisted of the short essay with which I opened this chapter.

  Jamie is much more stilted when he reads from a prepared script than when he talks ex tempore (he is not alone in this, I know). But he improved with practice, and at some point I told him that when he was done, he should say “thank you” to let everyone know that his remarks had concluded. The plan was to have me speak for about twenty minutes, then to let Jamie take five, then back to me for another twenty minutes. We would both participate in the question-and-answer period.

  The event was packed. It was sponsored by the College of Charleston’s REACH (Realizing Educational and Career Hopes) program, a visionary initiative that offers students with intellectual and/or developmental disabilities a four-year certificate program. As Alison explained it to me, the REACH students live in an integrated setting with their nondisabled peers, and they all live like ordinary college students, which means (in Alison’s words) that everyone learns together that Thanksgiving is the time for taking your laundry back to your parents’ house. Over one hundred students came out to hear Jamie and me, and when Jamie took the microphone, they were rapt. Until, that is, the very end, when Jamie said, “I learn so much every time I travel,” and then . . . and then . . . closed not with “thank you” but with “merci beaucoup.”

  He brought down the house. Brought down the house. I mean, the eruption of applause was electric. I mean, I mean . . . now how was I going to follow that? I did, because the show must go on, but I know when a show has been stolen.

  The trip to Charleston had gotten off on a weird foot. Jamie and I packed one suitcase for the two of us, and we put his personal paraphernalia in a backpack, just as my personal stuff went into my briefcase. As we were about to leave for the airport, Janet reviewed the contents of his backpack, and was startled to see one of Jamie’s large encyclopedias in it. “Jamie, you cannot bring this on the airplane,” she said. “It is much too big.”

  Jamie clearly felt blindsided. “Michael said I could!” I had, too. It was a very large book, but if he was willing to carry it, that was OK with me. I simply had said he could not spread it out on the seatback tray table in the plane; he could certainly have it with him at the hotel and on campus. But this did not sit well with Janet. “Well, if Michael said you could, then I guess you can,” she conceded, “but you are not being a very good traveler.”

  I discovered how much this stung Jamie when we got to airport security. The screening line at the State College airport is rarely very long, but no matter how short or long the line, in any airport, Jamie is always ready. He is not quite as crisp and efficient as George Clooney in the dazzling opening sequence of Up in the Air, but he’s close. Shoes off, pockets emptied, laptop in bin—he’s on it. As Jamie placed his backpack on the conveyor belt, an impressed TSA official told him that he was a very good traveler. Jamie didn’t say thank you. He said, “But my mother says I am not a very good traveler because I have a big book.” (I told him he was indeed a very, very good traveler. And that Janet thinks so too.)

  Now, why am I telling these stories about a couple of key moments in Jamie’s life as a young-adult traveler? Because I am so impatient with debates about how or whether we can “cure” or “mitigate” Down syndrome and enhance the cognitive capacities of people with D
own syndrome with drug therapies. I know that the connection isn’t obvious, so let me spell it out for a bit.

  In January 2010, Lisa Belkin posted an article on the New York Times’s Motherlode blog. Its provocative title: “Should Down Syndrome Be Cured?” Belkin opened with a recap of a story that had appeared two days before the posting:

  The guest post here on Friday—about the birth of Cash Van Rowe during a blizzard, and the jolting news that he had Down syndrome—led many of you to leave comments for his parents, assuring them that the road ahead was a journey they would cherish.

  But what if Cash’s Down syndrome could be cured—or, more precisely, be mitigated?

  News out of Stanford University late last year hinted that this might one day be possible. Researchers from its medical school and the Lucile Packard Children’s Hospital explored why children born with Down syndrome do not start life developmentally delayed but rather fall behind as they get older. By using mice that were genetically engineered to mimic Down syndrome, they found that neural memory deficits prevent such children from collecting learned experiences, and that they could improve memory and cognition by medically boosting norepinephrine signaling in the brain.

  Belkin goes on to quote Stanford neurologist Ahmed Salehi, who had claimed that this testing “could lead to an improvement in cognitive functions in these kids.”

  Two things should set off your spider sense here. The first is the promise of the miracle cure, every bit as sensational—and sensationalized—as the claims that research team × has discovered the gene for Y. The second, more elusive and more vexatious, is the slippage between “cure” and “mitigation.” Belkin’s second paragraph muddies the waters from the get-go, suggesting that “mitigation” is a more “precise” term than “cure.” No. It is not. It is a wholly different term. I think of the famous 2002 press conference with the incendiary, dynamic NBA star Allen Iverson, just after his Philadelphia 76ers had been bounced from the playoffs and he had been criticized by his coach, Larry Brown, for missing practices during the season. It is available on YouTube, and it features Iverson saying again and again, with great exasperation, “What are we talking about? We’re talking about practice. Not a game, not a game, not a game. We’re talking about practice, man, not a game. . . . We’re talking about practice.” This goes on for about two minutes, much to the delight of the press corps and Internet mashup artists everywhere. And it summarizes nicely how I feel about Belkin’s slippage: We’re talking about mitigation. Not a cure, not a cure, not a cure—we’re talking about mitigation, man, not a cure. . . . How long do I have to keep saying this? Mitigation. Not a cure.

  But apparently this slippage is not Belkin’s alone, if Dr. Salehi himself held out the possibility of improvement in cognitive functions. It is no wonder, then, that at the end of her column, despite having written that (more precisely) mitigation is the issue rather than cure, Belkin asks her readers, “If there were a cure for your child that would fundamentally change who he is, would you welcome it?” Such is the power of the discourse of the cure: it obliterates all nuance before and behind it.

  Along the way, however, Belkin acknowledges that not everyone is enthusiastic about curing (or mitigating?) Down syndrome. She quotes at length a response from Jenn Powers, a Canadian mother of twin boys with Down syndrome, Josh and Jacob:

  As you know, I have many years of history supporting people with intellectual disabilities. Through my connections with these remarkable people, both personal and professional, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. It is clear to me that, as a society, we need what people with intellectual disabilities have to offer.

  Before we welcomed Josh and Jacob into our family, I might have had a much easier time responding to this particular piece of research. But as a mother of two little boys with Down syndrome, boys whose identity, personality, appearance, is linked to that extra chromosome, my ability to rationally argue my point is seriously compromised. I find it hard to read this article without hearing a judgment on the value of my children, children who have transformed my life and the lives of many others—for the better—with the help of an extra chromosome. [Emphasis mine]

  I’m going to break into Powers’s response here, because even though I agree with it—and I will continue agreeing with it below—I think she makes a very serious mistake in the second paragraph. There is no sense, I believe, in which her ability to rationally argue her point is “seriously compromised” by the fact that she is a mother of children with Down syndrome. As you’ll see in a moment, her argument is solid from start to finish: it is rational, persuasive, and thoroughly humane. But this belief that one is “compromised” by being closely involved and invested in a subject is part of what German philosopher Hans-Georg Gadamer called “the Enlightenment prejudice against prejudice,” and it is amazingly pervasive in Western culture. I’ll explain briefly, with the proviso that my ability to rationally argue my point is not seriously compromised by the fact that I went to graduate school in the humanities.

  In decrying the prejudice against prejudice, Gadamer wasn’t saying “go ahead, be racist.” He wasn’t using “prejudice” in its customary, pejorative sense; on the contrary, he was arguing against understanding it in its pejorative sense, which he believed had become customary in Enlightenment and post-Enlightenment thought. He argued instead that one can come to knowledge precisely because one is interested in a subject, and that there are forms of “pre-judgment” that do not necessarily lock one into a narrow dogmatism about that subject. Jenn Powers’s response provides a perfect example of the phenomenon. Because of my own history, my own choices, convictions, and experiences, I approach Powers’s response sympathetically. I too can say that because of my connections with people with intellectual disabilities, I have become more and more convinced of the fundamental human dignity present in each person, the vital importance of diversity among the human race, and the particular and irreplaceable role that folks with intellectual disabilities play in creating a more humane, compassionate, and hospitable society. And yet my sympathetic “pre-judgment” of Powers’s argument does not prevent me from disagreeing with a more meta-philosophical aspect of it, the claim that it is logically compromised because its author is a parent with Down syndrome.

  No doubt there are many people who cannot argue a point rationally because they are too emotionally invested in their beliefs to reflect critically on them; this phenomenon, I have found, is especially prevalent among people who root for sports teams and athletes I disapprove of. (Kidding. Kidding.) But there are also plenty of people whose ability to argue a point is enhanced by their intimate personal knowledge of what they are talking about—in this case, years of experience, personal and professional, dealing with people with intellectual disabilities. Powers’s argument is not disqualified by that experience; it is authorized and underwritten by that experience. And parents of or caseworkers with people with intellectual disabilities need to own that experience and lay claim to that authorization. Rather than demurring by saying we are too close to the subject of intellectual disability to be rational about it, we should be arguing that we know and care about people with intellectual disabilities precisely because we are close to the subject.

  That said—though it needs to be said—let me get back to agreeing with Powers, who proceeds to make one great argument after another:

  In the debate surrounding disability—prenatal screening, euthanasia, etc.—there is an assumption that we all agree on a definition of what is good, what is better, what is the ideal. Who decided that smarter is better? Who decided that independence takes precedence over community? Who decided that both the individual and the society are better off without Down Syndrome? I would assert that something important is lo
st as our genetic diversity diminishes.

  I would also assert that people with disabilities may not themselves choose to be “cured.” Bioethicist and disability activist Gregor Wolbring, who happens to have no legs as a result of the effects of thalidomide, asserts that, if given the choice, he would want to remain “disabled.” He feels it gives him an evolutionary advantage, even, as it allows him to weed out the “jerks” who treat him differently as a result of his disability. He poses the compelling question, “What exactly is the problem? Is the problem that I have no legs, or is the problem that I live in a leg-dominated society?” Similarly, what exactly is the problem with Down Syndrome? Is the problem that my boys have a low IQ, or that they live in an IQ-dominated society? . . .

  In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet . . . [Ellipsis in original] these people have Down syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society.

  Belkin, for her part, responds to this argument with equanimity, half-endorsing the Gadamerian grounds for granting the cogency of Powers’s perspective by suggesting that there is a relatively benign sense in which Powers’s position is self-serving, but that Powers’s experience constitutes legitimate grounds for that argument. Writes Belkin: