Life as Jamie Knows It

by Michael Berube

  You might wonder what the hell I was doing popping his kneecap back into place. I might tell you that I’m not an emergency medical technician, but I did stay at a Holiday Inn Express last night. But I would be lying. The truth is that I remembered Janet’s similar knee injury twenty years earlier: as she was about to win the limbo contest at a party thrown by the cardiac intensive care staff of the University of Virginia Medical Center (where she worked during her years as a graduate student in the 1980s), she dislocated her right knee, cracking the patella in half. A real EMT immediately rushed to her side, popping the bone into place while someone called for an ambulance. (Janet wound up in a leg cast for two months, during a time when we lived in a crappy two-family rental house built on the side of a very steep hill. Getting in and out of that place involved navigating three flights of stairs. It was not a happy summer.)

  Jamie, clearly, had inherited his mother’s loose-jointedness—as well as her tolerance for pain. To this day I am astonished that he did not cry out, that he responded simply by quietly directing me to attend to his knee. Janet had been the same way, collapsing on the grass and asking for help, pointing to her knee. But in retrospect, I am glad I remembered that EMT’s response to Janet’s collapse. I probably saved Jamie a trip to the ER, not to mention many more minutes of living with his patella out of place. Once he could manage it, I took him home and explained quickly to Janet why we were back so early. Horrified, she immediately got him onto a couch, elevated his leg, and brought a fresh ice pack. We tended to him carefully that night, getting a knee brace that he wore for the next few weeks, during which he was seen by his doctor and given the all clear. And as soon as he was ready to resume tang soo do lessons, he got right back on that horse.

  In 2009, Jamie and I attended a competition held at the Bald Eagle Area High School—not to participate, just to watch, because we didn’t think we were ready for competitive sparring yet. There, Jamie met Grandmaster Jae Chul Shin, the founder of the US Tang Soo Do Federation and one of the leading martial arts experts in the world. I have a picture of Jamie, in full uniform, bowing his head in respect to Grandmaster Shin, who is smiling and looking sidewise at the proud father with his camera. (Grandmaster Shin died in 2012, at the age of seventy-six, so that picture is all the more meaningful to us.) Sometime later, Master Summers took me aside after a class and informed me that Grandmaster Shin had officially approved Jamie to proceed as far as he could in the discipline. I was deeply moved. I had been wondering what might happen if Jamie got to the point at which his (and my) tests would involve weapons (namely, the “bong” forms, requiring deft manipulation of a bamboo staff) and written essays. Effectively, Grandmaster Shin was saying bring it. And Master Summers continued to treat Jamie just like any other student, though (I think) with a little more solicitude and encouragement than he did for most of Jamie’s peers.

  We never got to the weapons-and-essays point. By spring 2010, Jamie had reached his limits, so far as I could tell—though I am aware that my reading of his limits was colored by the fact that I had reached my limits. We had attained the rank of third gup, brown belt with one white stripe, having started down at tenth gup, white belt; we had begun practicing for the red-belt test, and if we passed that, we would be only two steps, perhaps less than two years, away from becoming candidates for black belts. I suspected that Jamie wanted to be like Nick and go all the way to black belt, but then, Nick’s training in tae kwon do did not involve weapons. And the sparring was beginning to get wearisome to me: usually, people sparring with Jamie pulled their punches, allowing him to develop his kicks and moves without too much risk, whereas I invariably drew as my sparring partner the class sociopath, the big guy who was totally into inflicting as much pain as possible in thirty-second segments. The way I figured it, I already had enough bruises and wear from ice hockey, and I didn’t need any more. But beyond that, I sincerely believed that form eight, pyong ahn oh dan, was too much for Jamie (you can find all the forms on YouTube; indeed, demonstrations on YouTube helped us practice), and that one-steps sixteen through twenty, which would be required for the red-belt test, involved some potentially dangerous maneuvers. He was just not learning the movements. I thought ruefully of my father’s complaint about the violence of martial arts. And gradually, Jamie and I decided to call it quits.

  The “gradually” part was indeed very gradual: Jamie and I spent the rest of 2010 hemming and hawing about whether to push just that much further, take the test for red belt, and then call it quits. One night in San Antonio that fall, where I had taken Jamie for the American Studies Association conference, I was stunned to see him practicing some of his forms in the hotel pool, and I asked him if he really wanted to get back into it. He said maybe, but we let it drop, and there it has stayed ever since.

  I realize that in recounting Jamie’s various athletic accomplishments I run the risk of making it sound as if Janet and I were dynamo parents who did everything and tried everything and always proceeded with perseverance and indomitable spirit. I remember the plaintive blog comment I once received from a parent of an autistic child, telling me that my narrative of Jamie’s progress in golf made him feel inadequate, like he wasn’t doing enough for his kid. All I can say is that so far as I know, every parent of a child with a disability feels this way, myself included. In Life as We Know It, I described this as the “dialectic of disability,” whereby you oscillate crazily back and forth between the conviction that you are not doing enough for your child and the fear that you are pushing him or her too hard. And I know there are parents in Jamie’s group who seem to have it much more together than we do: they’re the ones who organize events and drive everyone to track and field meets and make sure their kids are usefully occupied as often as possible in fourteen different activities. I know also of a father who gave his son (a young man with Down syndrome, roughly Jamie’s age) golf lessons that make my instruction of Jamie look hopelessly rudimentary. There is always someone who can make you feel that you’re slacking: it’s true outside the disability community, it’s true inside the disability community. For my part, I have tried to take my cue from Jamie as much as possible. OK, I did push him a bit to get him back in the water after the Mishap of ‘98. But I’m glad I did, and so is he. I honored his wishes not to play Special Olympics softball and to bail on volleyball and basketball. I taught him the basics of golf when it became clear that he was no longer content merely to ride along in the cart and watch his father play. And with tang soo do, I took one for the team, because it was what Jamie wanted to do.

  On top of the dialectic of disability, there is the Father Factor: what is the difference, for me, between helping Jamie along, offering him love and consolation and encouragement, and being a crazed sports parent who instills in one’s child a maniacal desire to outperform others—and a concomitant fear of failure? By the time Nick reached adulthood, I think I achieved a stable equilibrium with him: he understands that I will deal him heartbreaking losses in ping-pong, and I understand that when we play darts he will wipe the floor with me. We will simply respect each other’s talents in these critical indoor sports. More important (and more seriously), although I always hoped Nick would use his talents to build a career in architecture (as opposed, say, to graphic design), and although I urged him to consider Washington University in St. Louis (that worked out well), I have no idea how the field of architecture works as a profession and no desire or ability to stand over his shoulder offering advice. But I did not expect to have to confront similar questions with Jamie. I should have known better. Though I have a new respect for certain sports clichés, I have never had any tolerance for the clichés about children with Down syndrome. Jamie is not an angel among us. He is an ordinary human being, full of passions and desires that are at once admirable, contradictory, volatile, and utopian. Why shouldn’t this be evident on the fields of play, just as it is in everything else Jamie does? In his various athletic endeavors he wants to feel confident, to feel proud, to feel capa
ble. He wants to have fun. And yeah, he likes to have people cheering him on, too.

  And yet that cheering has its limitations, does it not? In a searing op-ed essay written after the 2015 Special Olympics World Games in Los Angeles, Lawrence Downes wrote that when the cheering dies down, “that glow has to last, because the athletes will need it when they get home and become invisible again.” Sports have been so instrumental a part of social change in America, from the career of Jackie Robinson to the passage of Title IX, that we now tend to think of the fields of play as places where struggles over race, gender, and sexuality are coextensive with broader struggles over race, gender, and sexuality in society at large. But the integration of people with intellectual disabilities into the world of sport seems not to have followed the same pattern; as we’ll see in the following chapter, the past fifty years have seen tremendous successes in inclusive education for children, but not in inclusive employment for adults. Timothy Shriver, Downes wrote, “has a theory” as to why this is so:

  When members of minority groups make progress, he said, it is because “deep down most people know that they are the same as us, as me, whoever the dominant group is.

  “But with our group it’s like, ‘No, no, no, they are not the same. They are not like us. They are not going to go to medical school if we give them a scholarship. They’re not going to become engineers,’” he said. “We labor under the barrier, the attitudinal barrier, that this population is too different to matter.”

  Given those barriers, Special Olympics is sticking with gentle persuasion and the attitude-changing power of sports. It is all carrot, no stick. It is not ACT UP, and never will be; its revolution is televised, happily, on ESPN. This is a carefully thought-out strategy. Even its health programs—Special Olympics athletes tend to have serious untreated problems with vision, teeth, and hearing—are part of what Mr. Shriver called “an elaborate bait-and-switch.” Its clinics offer much-needed care, but their deeper purpose is to educate doctors about such patients, who too often get short shrift and indifferent care.

  This is the downside of Jamie’s (correct) identification of “his group”: as Shriver (correctly) notes, it is a group that is usually considered too different from other human groups to matter. And though Jamie has been very fortunate, encountering only a few medical providers who seemed to give him indifferent care, we know very well that as a group, doctors need to be educated about the lives, the well-being, and the value of people with intellectual disabilities.

  Downes closes his op-ed on precisely the right note of ambivalence:

  Special Olympics is a utopian organization, and to encounter it is to enter a well-constructed bubble of acceptance and equality. A strange thing happens when you spend a week inside that bubble at the Special Olympics World Games, watching groups of young people wandering about, relaxed and confident. You stop noticing the differences. The novelty wears off, and it becomes clearer that the world is full of people of an astonishing variety of appearances and abilities.

  But outside the bubble, the battle for hearts and minds, and for rights and laws, is not going away.

  The story of Jamie’s career as an athlete is largely a story of triumphs and achievements. Those triumphs and achievements, in the pools at Special Olympics meets (cheered on by legions of volunteers) and on the links at Belles Springs (cheered on by his father), are entirely real. But now it is time for us to go back outside the bubble.

  School/Work

  Jamie doesn’t like the following story, but as you’ll see in a moment, it has to be told. And after we had a brief discussion of this chapter, Jamie agreed.

  Jamie started public school in the fall of 1997, entering kindergarten one year “late,” at the age of six. (Later, in fourth grade, he would repeat a year, so that he wound up graduating from high school in 2011, just shy of his twentieth birthday.) Janet and I assumed he would be socially adept, having mingled with his nondisabled peers in preschool programs since the age of two, but we worried that he might already be significantly behind his classmates cognitively. You can imagine our surprise, then, when his teacher and aides reported to us, at our first parent-teacher conference, that Jamie was among the minority of kids in his class who knew the entire alphabet. And he knew much else, too, especially when it came to animals or sign language. We were asked: How did Jamie learn everything he knows? How can we help teach him more? We replied that we try to play to his strengths—his memory and his capacity for making lists—whenever possible. And we were deeply relieved and gratified that Jamie’s teachers and paraprofessionals had recognized his potential.

  Then came the bad news. Jamie required some help with behavioral issues concerning peer interactions . . . oh, let me put this more bluntly: he had licked a girl on the arm, and he needed to know that this was totally inappropriate. So our first report on Jamie’s progress in school was precisely the opposite of what we had expected: Academically, he was doing fine. Socially, he needed some work. Red-faced, Janet and I explained to the kindergarten staff that Jamie had just gotten a dog for his sixth birthday, and had evidently gotten it into his head that playful licking was an acceptable form of expressing affection. That afternoon, when we picked Jamie up from school, I asked him directly: “Did you lick Depeche on the arm?” His hunched-shoulders, pursed-lips reaction told us that he felt as embarrassed about this as we did. He doesn’t like hearing about this episode today, and he didn’t want it to be in the book. But I have assured him that of all the things you can do wrong in school, licking a classmate’s arm is preferable to biting, hitting, taunting, or bullying someone—and that I will assure everyone else that Jamie never did it again.

  Telling the story is necessary, I think, because the stakes of inclusive schooling are so high. For children with intellectual and/or developmental disabilities, the Individuals with Disabilities Education Act (IDEA) is an absolutely critical piece of civil rights legislation, entitling all American children to a free appropriate public education in the least restrictive environment. The law was passed in 1975, but only in the 1990s did “the least restrictive environment” become, for most children with disabilities, something other than the special education classroom. In other words, Jamie arrived at Westview School in Champaign, Illinois, just as schools like Westview were beginning to incorporate kids like Jamie into the “regular” classroom. Jamie’s Individualized Education Program (IEP) stipulated that he and another classmate would have a number of “pullout” hours for special-needs instruction; for example, Jamie needed extra help with learning how to hold a pencil, thanks to his low muscle tone and small-motor difficulties. But for the most part, and for most of his life until middle school, Jamie was thrown into the mix with all the other kids. When school districts in the United States started taking the potential of the IDEA seriously, they embarked on an experiment in egalitarian democracy every bit as daunting and admirable (though not as politically volatile) as the struggle for desegregation. Jamie was the first child with Down syndrome to be “included” at Westview, and I never stopped thinking that only thirty years earlier, he and his trisomy-21 cohort were being warehoused in state asylums. Now they were being taught reading, ‘riting, and ‘rithmetic. It is almost enough to make you believe in progress—though if one wants to be an agent of progress, one wants to make sure that one’s kid does not develop a habit of licking Depeche.

  The objections to inclusive education did not come exclusively from curmudgeons such as Roger Kimball and William A. Henry III, whom I mentioned in Life as We Know It, and who considered it perfectly acceptable to ridicule the idea of including “retarded children [in] classrooms for normal students.” Objections also came from teachers, parents, and principals worried about whether schools would become responsible for taking care of any number of new students with challenging behavioral or medical conditions. (Short answer: it all depends on what “least restrictive environment” means.) So we were especially attentive to anything that might mark Jamie as a “difficult�
�� student. But then again, where did anyone get the idea that children with developmental disabilities have a monopoly on difficult-student-dom? They are very unlikely to be bullies, after all, and much more likely to be bullied. I recall an incident in the local gym when Jamie was six or seven. I dropped him off in the kids’ room (restricted to children under ten) while I worked out, and when I came back, I was sad to see that Jamie wasn’t doing much of anything, certainly not playing with other children or engaging in the “KidFit” exercises the staff made available. And then it was time for the kids to line up, and one kid decided to run at full speed into the mirrored wall while another kid took the opportunity to slam his neighbor’s head onto the hardwood floor. And I thought to myself, Maybe it’s OK that Jamie wasn’t doing much of anything.

  Inclusive schooling did two things above all: it gave Jamie a chance to emulate and befriend his nondisabled peers, and it gave the other kids the much-needed sense that children with developmental disabilities are part of the ordinary fabric of life. Jamie began to dream about inviting his classmates for sleepovers (this never happened, though they always came to his parties) and started making up barely intelligible scenarios, one of which involved classmates Arooj and Tom having pudgy cheeks. Somehow B. B. King was involved. No, I can’t explain it any better than that. But it was clear that Jamie’s world was widening—and that he was not being bullied. On the contrary, some kids genuinely liked him; in third grade, toward the end of his time in Champaign, one girl, Shelby Peacha, actively befriended him, visiting him at our house and inviting him to hers. On one of these playdates, Shelby confided to me that sometimes in school Jamie was hard to understand, and I told her that sometimes even I don’t understand what Jamie is saying. Then I told her about two young children who’d met Jamie on a playground earlier that week. They didn’t know that Jamie had Down syndrome, but they knew he was different in some way, and they discussed what that way might be. “He can’t hear,” said one child. “No,” said the other, “he can hear, but he can’t talk.” I told Shelby that I’d explained to those children that Jamie can talk . . . and hear, and read, too.