Life as Jamie Knows It

by Michael Berube

  For me the story starts on Little League baseball opening day, April 2004. I was sitting cross-legged on the grass on the third-base side of the field. Jamie, twelve, was sitting on my lap. Jamie was technically a Little Leaguer, and was there as a member of the Challenger League, a Little League division for kids under twenty-one with developmental disabilities.

  Jamie started playing Challenger League in 2002, and over his first two years I’d been struck by how pleasant an experience it was. Up to that point, he had never played any form of organized sport. And of course, Little League baseball in central Pennsylvania can be deadly serious business. Every summer we host the Little League World Series at a baseball complex that sits at the end of an unassuming residential street in a quiet part of Williamsport, a small town in coal-mining and fracking country. Jamie and I have been there a few times: it is a genuinely weird experience, driving down a tiny side street that somehow opens on to a hidden world where thousands of people are watching—and ESPN is televising—a competition that involves children from around the world.

  And for many years, Little League has been notorious for eliciting aggressively bad behavior among coaches, players, and (most of all) stage fathers, who seemed determined to live their sports fantasies vicariously through their children. Youth baseball, I thought, was a world in which parents threatened and assaulted umpires, where coaches threw temper tantrums and water bottles . . . and threatened or assaulted umpires. In 2005, in a western Pennsylvania children’s league, a coach actually paid a seven-year-old player twenty-five dollars to injure an autistic teammate in pre-game warm-ups so that the team would have a better chance of winning. The young hired gun, after striking his teammate in the head and the groin with a ball, eventually told police of the arrangement (after the victim’s parents had investigated their child’s injuries), and the coach was arraigned on a variety of criminal charges. The league president, Eric Forsythe, a friend of the coach, told the press that the incident had been “blown out of proportion.” And that, folks, is how you condone and enable bullying and violence aimed at kids with disabilities.

  All one can say is that these appalling incidents are not specific to baseball; parents who get involved in other sports are often worse. Hockey parents have been known to attack one another and to hurl objects at referees; my own hockey dad was mild by those standards, but he was capable of advising me never to pass to a rival teammate who was vying with me for the league scoring title. It hardly mattered, however, because my rival’s parents had advised him never to pass to me, either.

  But Challenger League, I thought, was a world apart. No one keeps score, no one counts balls or strikes, and everyone reaches base. The games last two innings; an inning is over after every child has batted, and after the last batter makes contact with the ball, be the ball fair or foul, everyone rounds the bases for home. Often, after a batter has struck a ball, coaches will throw a few more balls into play so that everyone gets a chance to field. It’s like sport without the thrill of victory or the agony of defeat.

  In every Challenger League game, Little Leaguers served as “buddies.” Tweens from local Little League teams would pair up with the Challengers, and though there must have been some degree of pity or condescension in this arrangement, it was never palpable. I have no idea how any of the individual Little Leaguers, or their coaches, felt about this. It seemed, on one hand, a little too much of a feel-good “helping-the-handicapped” exercise. And who knows how many of the Little League kids thought I have to get into full uniform and spend an hour on Friday evening with kids who have no idea what baseball is? But if any of them thought such ungenerous things—and humans being what they are, it would be miraculous if no one ever had such thoughts—they never gave themselves away. Because on the other hand, they really were helping the handicapped, so to speak, and spending an hour of their time (plus travel time, plus whatever time it took to get into and out of full uniform) to incorporate Jamie and his cohort into Little League, more or less. And for what it’s worth—it could be condescension or genuine admiration—the Little Leaguers who became Jamie’s buddies never failed to marvel at the fact that he has a strong throwing arm and can wield a serious bat. However, he had trouble catching a thrown ball. (Though by the time his Challenger years were up, he had managed to snag a legit foul pop behind first base.)

  So it was especially surprising to me, that April 2004 morning on Little League opening day, to hear sweet, mild-mannered Jamie start grousing about how he hadn’t been picked to throw out one of the ceremonial first pitches. Three or four children had been selected to throw out the first pitch from each of what seemed like dozens of leagues, divisions, conferences, and associations. So I started grousing about the ceremony of a “first pitch” that went on for over half an hour and thinking dark thoughts about what a second, third, fourth, fortieth, four hundredth first pitch could possibly mean, and Jamie was grousing that he wasn’t a part of it. I had never even heard him grouse before. But there he was, in his cap and jersey, telling me, “I can do it better than Pete.”

  “Did you say you can do it better than Pete?” I asked, sotto voce.

  “Yes,” Jamie insisted. “I should throw the pitch.”

  “Now, listen,” I replied, completely unprepared for this. “That’s true; you can throw better than Pete.” There was no use denying this; Jamie had the best arm in Challenger League. “But this is not a competition, Jamie. Pete was invited to throw the ball this time. Maybe next year you will be invited. But now it’s Pete’s turn, and you have to wait your turn.”

  This mollified him somewhat, as well it should have. But it also produced in him a determination that, come April 2005, he would be out there on the mound, ball in hand, all eyes on him. And that’s what happened, one year later: Jamie threw out one of the innumerable first pitches, and he did it reasonably well. On my blog, I posted pictures of his pitch, as well as a picture of Jamie in batting practice, with me tossing him underhand pitches in a batting cage. In response, readers suggested that I should throw overhand to Jamie, on the grounds that overhand pitches are easier to see coming in. I took up the suggestion, and sure enough, before too long Jamie was belting line drives and hitting the ball out of the infield. This was something no other Challenger League player could do, and it established him as the most fearsome slugger in a decidedly non-fearsome league.

  There was, as you would imagine, a downside to this new feature of Jamie’s psyche, and I triggered it a few months after his historic first pitch when I tried to show him how to improve on his Harry Potter CD-ROM game. Janet and I had bought him the game in the hope that it would improve his hand-eye coordination and give him some purchase on the world inhabited by Nick—the world of Xbox, PlayStation, and EA Sports.

  Jamie had reached that crucial point in a young intellectually disabled male teenager’s development when he was no longer satisfied to be “included” among his older brother’s gaming friends by being given an inoperative console and being encouraged to pretend he was really playing along, but was not yet proficient enough to be given a working console. So when I noticed that Jamie was having trouble using his computer mouse to trace some of the on-screen patterns that would enable him to use spells such as “Alohomora” and “Wingardium Leviosa,” I showed him how to hold the mouse steady, unlock the spells, and earn extra bonus points.

  That was a very serious mistake. Once Jamie saw that his scores of 51 and 52 percent accuracy—just barely good enough to squeak by—could be bested by his father’s 84 and 87, he stopped playing Harry Potter computer games altogether. That phase lasted nearly six months; and when Jamie finally returned to his computer games, I made a point of telling him—quite honestly—where his gaming skills were better than mine. We quickly struck a deal: Jamie would handle all the tasks in Hogwarts and around the grounds, and I would take over for the Quidditch matches, which involved flying tasks Jamie hadn’t mastered yet. That was in spring or summer 2006. Within a year or two, he ha
d become a better flyer and a better Quidditch player than I ever was.

  In the Geri Ryan meet, Jamie’s events were the fifty-meter dash, the standing long jump, and the softball throw. He killed it in the softball throw, hurling the ball as far as competitors twice his age and size, and he jumped a good four feet (not bad for a kid five feet tall). But it was his performance in the 50m that impressed me most, because prior to that first meet, in 2005, Jamie did not run. At all. Not for fifty meters, not for five. He didn’t have the confidence, and as I’ve mentioned, for too long he didn’t have the orthotic supports he needed. So Janet and I prepped him for the big event by holding mock-races in the alleyway beside our house, racing perhaps twenty or thirty meters to the nearest telephone pole. But when he got out on the track, he got into the zone. He was pumped by the crowd, by the festivities, and by seeing Special Olympians from neighboring counties like Blair and Clinton. (This is where he developed his fascination with Pennsylvania’s counties.) And he earned himself a silver medal in the race, running it in 14.82 seconds.

  Jamie has competed in the Geri Ryan games every year since then, and the games themselves have gotten bigger and bigger, bringing in more and more athletes from more and more counties. Not long after his debut, Jamie decided to join the Special Olympics volleyball and basketball teams; he has since given them up, I’m sorry to say, and his one attempt at softball didn’t please him, despite his monster arm and his fearsome slugging. But during his brief stint as a volleyballer, I did witness him serve up two consecutive aces in that match at Villanova—and more important, he stayed in a hotel with the team the night before the tournament. It was in November 2005. He was fourteen, and that was his first night away from his parents. (That would also be the occasion on which he helped himself to many servings of ranch dressing.) I joined him the next day, flying in from a speaking engagement at the University of Michigan, and accompanied him to his games and to the big dance on Saturday night. Needless to say, I left him to his own devices for the dance. But I remember as we entered the gymnasium where the dance was being held, Jamie scouted around for a few minutes and then turned to me, asking, “Where’s my group?” And all I could think was He has a group. And he knows he has a group. I have often wondered what he thought, back then, about that knowledge. Sure, I might be overthinking this; at the time, he might simply have meant “Where are the people I came with?” But I know that by the age of fourteen, Jamie identified readily as a person with Down syndrome, and as a person with a legible disability. That process had started years earlier, when Jamie became fascinated with a calendar published by the National Down Syndrome Society. Most, but not all, of the gorgeous photos in that calendar were pictures of young children, and Jamie was seven or eight when it grabbed his attention. The first time he mentioned it to me, I thought he was saying “dancing drum”; he may in fact have been saying dancing drum, but he was referring to his 1998 NDSS calendar of children with Down syndrome, and he knew he was part of that group. Now, he was identifying with a group that comprised (a) the people he came with, (b) a group of people with disabilities, and (c) people with disabilities who were also his teammates.

  In 2009, Jamie entered serious solo competition for the first time: Special Olympics swimming meets at nearby universities. Now, when I say “serious competition” and “Special Olympics” in the same sentence, I am aware that there are people who might snicker or guffaw. I imagine that if you are reading this book, you are probably not one of them. But no matter what your degree of sympathy with or identification with or position within the disability community, you know that there are people who think of Special Olympics as the very opposite of, or at least a refuge from, serious competition—like Challenger League, where everyone scores and nobody loses. No agon, no striving, just a happy land where everyone gets a medal just for playing. One wonders just what was going through Barack Obama’s mind that night on The Tonight Show in 2009 when he described his poor bowling scores as “like the Special Olympics or something”; he very possibly thought that the joke would sound self-mocking, but it very clearly associated Special Olympics with athletic incompetence. (Obama promptly apologized, as well he should have; interestingly, the Washington Times defended him in an editorial, writing, “Obama is allowed as [sic] to say impolitic things as long as they don’t hurt the country. It also lent humanity to Mr. Obama.”) The very funny and occasionally problematic film The Ringer, one of the few films in the history of the medium that attempts to be a sympathetic comedy about (and employing numerous actors with) intellectual disabilities, does a fine job of dismantling that association: the premise is that a nondisabled young man (played by Johnny Knoxville) could clean up in a Special Olympics meet by feigning intellectual disability. The film was made with the full cooperation of Special Olympics. It is also commenting wryly on the phenomenon of nondisabled actors playing characters with intellectual disabilities—though apparently many viewers, especially but not exclusively the people who objected to the movie, missed this seemingly obvious point. That premise turns out to be quite mistaken. But you should see the movie for yourself—I will provide no spoilers here.

  Anyone still inclined to snicker or guffaw should read Timothy Shriver’s account of the first Special Olympics, held in Chicago in 1968. Chicago in 1968 is usually remembered for something else, but this seems important too.

  All over Soldier Field, children of scorn and lonely teenagers tried their best and won. People who had so little to give gave the one thing they had: their hearts. And those around them were given a chance to unleash their spirits, too, by cheering them on, by watching their bravery come to life, by meeting their smiles with eyes opened to loveliness. On that day, winning had nothing to do with beating anyone and everything to do with playing like no one is judging even though everyone is watching. Sports had never seen anything like it. No one had.

  . . . On July 20, 1968, for the first time in history, people with intellectual disabilities were celebrated as great individuals by others who discovered their gifts in the joy of sports. Gifts! The idea of Olympic triumph, of winning, of bravery, of being gifted—none of these qualities had ever been conferred on these human beings. But on the first day, there was something in their persistence, something in their emotional tenderness, in the uninhibited openness to others that burst to life and awakened those who could see to a different way of defining what it means to win.

  In disability studies, we tend to be skeptical of the so-called “supercrip” and allergic to any suggestion that people with disabilities can be inspiring. But it really is quite difficult to go to a Special Olympics meet, of whatever size, and not be inspired by the passion of the athletes and the dedication of the legions of volunteers. When you realize that only fifty years ago, almost no one believed that “the retarded” could participate in athletic events, you realize just how extraordinary Eunice Shriver’s vision was. And if you’re me, you thank her family—and all those volunteers.

  So when I say that Jamie took part in serious competition, I am not saying that Jamie’s Special Olympics swimming career can stack up against the times posted by nondisabled swimmers his age, any more than I would claim that 14.82 seconds is an impressive time for a fifty-meter dash. Here’s what I’m saying.

  In his first meet, in April 2009, at St. Francis University in central Pennsylvania, Jamie opened by winning gold medals in the 25m and 50m freestyle. Heats included only three or four swimmers, segregated by qualifying times; there were dozens of heats. This practice is called “divisioning,” and it is at the heart of Special Olympics, allowing athletes to compete at whatever level is appropriate to them. Then for his third event, the 25m backstroke, the meet officials combined his heat—consisting of three teenagers who had posted qualifying times of about forty or forty-five seconds—with that of two adult swimmers whose times were thirty-two or thirty-three seconds. Jamie’s best time in practice runs had been something like forty-three seconds.

  I filmed the race li
ke a dutiful dad; in fact, I bought a digital videocam expressly for that purpose. But I noted with alarm that at the halfway mark, Jamie trailed the field. I did manage to capture the beginning of his surge, but as he got closer to my end of the pool, my camera angle focused more exclusively on him, so I didn’t immediately realize that when he touched up, he did so in first place—for the third time that morning. He had overtaken the other four swimmers in only twelve or thirteen meters.

  Not until later that night, after I had replayed the race a few times on my laptop, did I discover that Jamie had briefly looked around in the middle of the pool and found that he was trailing—whereupon he had reached down and found another gear, churning his arms and legs frantically to beat his fellow swimmers. He also beat his personal best time by just over ten seconds, which suggested to me that his “personal best” was a function of his relations to other swimmers—or, in more colloquial sports talk, he rose to the level of the competition. And it wasn’t simply a question of winning: in the statewide games two months later, the best he managed was a silver in the 50m freestyle—but that was all right with him, because he shaved another couple of seconds off his personal best in the event. Citius, altius, fortius. That’s what it’s all about. Well, that and living apart from his parents for two nights in a Penn State dormitory. Jamie thought that was pretty great, too. And he bonded with his roommate, a talented young man on the autism spectrum.