Disabled, athletic, and not trying to inspire anybody

Heroic tales of disabled athletes celebrate the exceptional, and exclude those who are simply trying to compete.

Disabled, athletic, and not trying to inspire anybody

Heroic tales of disabled athletes celebrate the exceptional, and exclude those who are simply trying to compete.

I haven’t seen the footage in years, but I know I was wearing a Jim Morrison T-shirt, possibly a puka-shell necklace, and definitely the terrible, shaggy mop-top to which I clung until college. I was sitting on my parents’ brown leather couch in Irmo, South Carolina, steadfastly refusing to give a halfway decent answer to every fluff question the journalist asked me on camera.

What happened to my hand? I only ever had the right one. Was it hard to play inline hockey without it? I don’t know. I’ve never played any other way. How did I learn to adapt? I just played.

My reticence wasn’t principled, just classic awkward teenager. But I didn’t want to be there. I didn’t want to be on camera. I didn’t want to do a local news story, not then and not when the paper did the same piece a few years later. I didn’t want to be the one-handed kid who people praised for — what? Not rolling over and giving up at birth?

I felt uncomfortable in that spotlight. The phrase inspiration porn hadn’t been coined then, but that’s what I struggled with: the fact that whatever I did had to mean something more, that I wasn’t allowed to just be another kid playing a sport that no one cared about in a failing skating rink that would become a bridal mall in a few short years. I just wanted to be normal.

My parents had convinced me to participate in the story. They said news coverage might help my hockey league survive the bankruptcy it was doomed to suffer, but really I think they were smart enough to know my debilitating shyness was more than normal high school angst. It was that, but it was also cover for a deep-seated self-doubt that was an inevitable outgrowth of being the only person I knew who was missing a limb. The praise would do me good.

They were right, eventually. In their interviews, my teammates and coaches wildly overstated my athletic prowess, which had been declining rapidly ever since puberty, and almost no one at school mentioned the story, except to tell me I said “um” too much. Still, it took a few years for the confidence to come, because it takes a certain level of self-assurance to accept praise for something you’d rather pretend didn’t exist. When I visited St. Petersburg, Florida in July, I felt like that kid again. I was there to interview Shaquem Griffin, who became the first player with only one hand in the modern NFL when the Seattle Seahawks selected him in the fifth round of the 2018 NFL Draft. The linebacker became a sensation in the lead-up to the draft with an impressive bench press and the fastest 40-yard-dash ever recorded for his position, and later the NFL’s favorite feel-good story, especially because his twin brother Shaquill had joined the Seahawks the year before. I heard their story on talk shows, in newspaper profiles and TV featurettes, in Inseparable: How Family and Sacrifice Forged a Path to the NFL, the memoir they co-wrote with journalist Mark Schlabach.

There is never a hint of self-doubt in Shaquem’s telling of his story. With metronomic precision, in the book and in every interview, he explains the amniotic band syndrome that prevented his hand from fully forming in utero, the surgery to remove it as a child, his dedication to football success and proving wrong all those who doubted he could succeed with five fewer fingers than standard. He is almost surely the most visible athlete with a disability in the world, and he is completely at ease with the role. “Showing kids they can live out their dreams, regardless of their differences, is the reason God put me on this earth,” he writes. “I have no doubt about that.”

Shaquem Griffin

Shaquem Griffin

I interviewed a dozen other people with disabilities in the months before I met Griffin. We talked about shared discomforts, the parallel experiences of navigating a world with a body that makes others nervous or intrigued or both. I thought I would do the same with Griffin. I could not have been more wrong. In the back of a suburban Barnes & Noble, kneeling in front of a table while Griffin signed copies of his book, surrounded by his family, I found him to be charming, friendly, and in possession of a media-trained ability to shrug off every single question I asked him. The 13-year-old me stayed silent because I was terrified of the attention — Griffin was so comfortable in it he barely had to say anything of substance:

Doesn’t writing a book about making the NFL with one hand make it hard to be seen as more than the one-handed football player? “Nah, I don’t think about things like that, man.”

Do you ever wish you didn’t have to be a role model? “No, I never wished that.”

Do you worry about the limits of positive thinking? “It’s a concern, but everybody being able to do the things they love is the most important thing.”

The moral Griffin always gives to his story is the value of hard work: “Nothing comes easy” is the mantra he uses in Inseparable. “You can be anything you put your mind to” is the way it’s phrased in all the profiles and awards. On a moral level, I’ve always found that sort of sloganeering dangerously conservative, positing a personal willpower that can overcome injustice and all of injustice’s actual effects. But talking to Griffin, in the midst of his book tour, I found it seductive. Then again, I was always uneasy with the stories about me — and all the mundane conversations they mimicked — because they condescended, assuming I should be proud of accomplishing the minimum. Here was a message of empowerment, of holding myself to a higher — maybe even impossible — standard. I found it politically repulsive and personally compelling.

“You’ve got to have two stories, the true story and the lie story,” Ashley Thomas, the founder and executive director of adaptive sports organization Bridge II Sports, told me a month before I met with Griffin. She meant the obvious lies, like saying you lost your hand in a shark attack so you can avoid divulging personal traumas to inquiring strangers. But leaving St. Petersburg, I started thinking that the truth and the lie are often the same narrative, and we don’t always know how to tell them apart.

There’s one story in particular that encapsulates everything we’re unable to reckon with about sports and bodies and disabilities: the rise and fall of Oscar Pistorius.

In 2012, Pistorius played Griffin’s role as the feel-good, disabled spokesman for the value of hard work and self-belief. A double-leg amputee, he was a Paralympic champion who decided to compete in able-bodied sports as well, qualifying for the Olympics as a member of the South African 4x400 relay team. He was a star.

Pistorius in the 2012 London Olympic Games.

Pistorius in the 2012 London Olympic Games.

But the following year, Pistorius murdered his girlfriend, Reeva Steenkemp, after a domestic dispute. Even today, those in the Paralympic movement seem uneasy talking about him — multiple people I interviewed deflected when I brought him up, because his story fits so uneasily with the common narratives of empowerment.

“It’s an important tale to tell,” David Howe, a four-time Paralympian in track and field and the Dr. Frank Hayden Endowed Chair in Sport and Social Impact at Western University, told me, noting that he met Pistorius on multiple occasions. “People thought he was a role model because of the impairment he had. But he was a spoiled, petulant athlete who would do anything to win. He wasn’t a good person — but he got away with a lot because he had a disability.”

That’s the first assumption Pistorius undercuts: that living with a disability is necessarily a moral good. It’s a common one. An assistant coach at a soccer camp once gave a speech about how brave it was for me to attend, how noble that I didn’t accept any limitations in my life, all the while ignoring the fact that this was a camp for soccer, a sport in which you use your feet. To live with a disability, in the eyes of many, is to be less than human in a way that makes doing basic human things heroic — which removes the space for the most ordinary kinds of human complexity.

It’s impressive that Pistorius made the Olympics without legs, but the thing I could never understand is why it was treated so differently than when five-foot-three-inch Muggsy Bogues made the NBA.

However inspiring it was to see Pistorius compete in the Olympics — for others with disabilities above all — the fact remains that his athletic success can just as easily stem from the same petty, selfish, and indeed aggressive mentality that many athletes share, wrapped in all the concomitant problems of violence and misogyny that lead to domestic abuse.

That obvious truth is ignored because we assume that disabilities must be overcome. They aren’t treated as conditioning facets of our identities like all of the other physical, psychological, and social factors that combine to define an individual’s experience, but as failures. That’s the second assumption Pistorius’s story questions. Often, he was described as a role model not because he fought to do a thing he loved, but because he supposedly surpassed his physical limitations in unheard-of ways. People looked at him as a hero because they assumed he was inferior.

He wasn’t — he was just a person. It’s impressive that he made the Olympics without legs, but the thing I could never understand is why it was treated so differently than when five-foot-three-inch Muggsy Bogues made the NBA. The question goes beyond disability, too: as Monica Hesse asked in the Washington Post, why is Michael Phelps celebrated for having “the perfect body for swimming,” thanks to his 80-inch wingspan, double-jointed ankles, and an abnormally low production of fatigue-producing lactic acid, while Caster Semenya, one of the best runners in the world, has been repeatedly targeted for her physique?

Semenya, a three-time world champion and two-time Olympic gold medalist in the 800-meter race, has long been policed by the international sporting community because of her body and gender expression. She was forced to prove her gender as a teenager, which the International Association of Athletics Federations, track’s governing body, defended by saying she “may have a rare medical condition which gives her an unfair advantage.” That condition is a naturally high level of testosterone, which the IAAF targeted again in 2018 with new rules capping the amount of testosterone women are allowed to have if they want to compete in middle-distance races. Semenya was subsequently barred from her events. (She is currently able to compete while the case is under appeal.) The rules were so narrowly defined that they appeared to target her specifically — ”the only point of track’s dumb new testosterone rules is to make it illegal to be Caster Semenya,” as a Deadspin headline put it.

Her success “should be about celebrating difference,” Howe says, “but because sport is traditionally separated into male and female, it makes us question the system. I think that’s a good thing.”

At its core, that system is about what sports are for, and thus what makes for equitable competition. Semenya’s ruling was based on the idea of creating “fair” women’s races. Pistorius was only allowed to run in the Olympics after the Court of Arbitration for Sport ruled that his prosthetic legs didn’t offer an “unfair advantage” over natural legs. But behind both is a long list of unstated assumptions about what makes for a normal body, and of what moral lessons athletic competition is supposed to disclose.

“I’m still a kid, and I’m still trying to play,” Miles Hill told me. “But I’m trash.” I met Hill, a college sophomore so charismatic he seems destined for political office, at a pick-up wheelchair basketball event organized by Bridge II Sports in June in Durham, North Carolina. A Durham native himself, Hill explained that able-bodied sports didn’t offer an engaging outlet for him, like they did for me, thanks to his specific disabilities. “Not to say I couldn’t have made the NBA if I kept playing able-bodied basketball, but at 4’9” I don’t think that was my route.”

That left him with a dilemma that many with disabilities have: “I can not play and be bored, or I can play and lose.” He found an alternative route through wheelchair basketball, which he now plays at the University of Illinois Urbana-Champaign. It’s a “sport that’s made for me,” he said.

His story isn’t unique. Nearly half of adults with disabilities aren’t physically active, according to the CDC, and many others suffer from depression, self-doubt, and social exclusion. Adaptive sports create an avenue to experience their bodies in a fuller way. Leagues are often small, community-based affairs, but they are growing. The National Wheelchair Basketball Association includes over two hundred teams spread across eight divisions, including the intercollegiate division Hill plays in. But expanded outlets offer more than just competition.

“I was a very angry young man,” Akeem Hassel, a 29-year-old Bridge II Sports program associate and coach from Raleigh, told me. “I was adopted at one year old. My dad was incarcerated most of my life. My biological mother lost the rights. And I was born with spina bifida. Wheelchair basketball has been a great outlet — the camaraderie, the lifelong bonds — it really gave me a lot of confidence.”

Classification removes the barriers of disability, but that only makes adaptive sports as fair as able-bodied sports, which aren’t fair at all.

That outlet is made possible by the classification system used in adaptive sports, which governs eligibility on the basis of disability. It avoids “one-sided and predictable competition, in which the least-impaired athlete always wins,” according to the International Paralympic Committee. (It’s worth noting that one expert, discussing Semenya, told Wired UK that he expected to see intersex athletic leagues with classes based around testosterone levels, explicitly based on the Paralympic model.)

At its best, the Paralympics system removes those barriers, creating a competition that acknowledges gradations in how a diverse set of bodies can perform specific functions. Classification is sport-specific, and most sports have multiple classes determined by the severity of impairment. I would be a C5 — the class for the least impaired athletes — in para-cycling; if I was also missing a foot, I’d be a C4. But I couldn’t play wheelchair basketball at all, because classification is based on trunk control and balance. The specifics get very complicated very quickly.

If the classification system works for its intended purpose, though, it still can’t play the role that many ask it to. The idea of fair competition is inextricably tied to political questions of equality and inclusion — a connection that the movement claims itself. It aims to “make for an inclusive world,” as the IPC vision goes, and the organization claims that it “boasts a strong track record for transforming attitudes, cities, countries, and the lives of millions of people around the world.”

But it’s a “fallacy” that the Paralympics are accessible for everyone, argues Howe, the former Paralympian. Classification removes the barriers of disability, but that only makes adaptive sports as fair as able-bodied sports, which aren’t fair at all. Other inequalities — of height and wingspan, wealth and training, those rooted in misogyny and racism — still impact both who wins on the field and who can compete in the first place. And more obviously, if inclusion is determined by who is athletically talented, where does that leave those of us who just plain suck at sports?

The problem might just be that sports are a bad avenue to address the broader issues, something that becomes clearer at the highest levels, like the U.S. Para-cycling Road National Championships in Knoxville, which I attended the week after meeting Hill and Hassel.

On the one hand, the Paralympics are still treated as a human interest story not so different from how the news covered my rec league prowess. “It must be therapeutic,” one of the few spectators I found in Knoxville told me. “They deserve support because they work hard,” another said.

To counter that tendency, the IPC, the U.S. Olympic and Paralympic Committee, and other organizations try to emphasize that the Paralympics “is [an] elite sport,” as US Paralympics chief Julie Dussliere explained in a phone call. “You have an Olympic athlete running 9.5 in the 100-meter [dash] on a regular basis. Then you also have Paralympic athletes running in that same range, depending on what their impairment is.” The USOPC also just added Paralympics to its name to further emphasize the connection to the Olympics.

In Knoxville, the result was pairing the para-cycling championships with their able-bodied equivalent, something that athletes and administrators both continued to emphasize. “It gives us a little validity, being with the able-bodied event,” four-time, two-sport Paralympian Will Groulx said after a press conference kicking off the weekend. “We’re elite athletes, not just a side thing.”

Medal ceremony in Knoxville

Medal ceremony in Knoxville

The hope among athletes and others in the movement is always to grow the sport, something every athlete I spoke to focused on. “Doing it with [the able-bodied event] is a great idea, because it brings out more people, because more people want to see them. Then they’re out there to see us and start thinking about it more,” Paralympian Samantha Bosco added. It’s working, too. The 2016 Paralympic games had a cumulative audience of 4.1 billion people — a 127 percent increase from 2004 — thanks in large part to deals the IPC signed with the International Olympic Committee, guaranteeing operational and broadcasting ties between the two games.

Most of the conversations I had with people in the movement focused on that growth — on more competitors, better support, ever increasing levels of competition. But I couldn’t help but notice the signs of a sport still in the early stages of professionalization.

Unlike the able-bodied races, the para-cycling events weren’t televised, and while some of the events shared courses, the para-cycling road races were the only ones segregated outside of Knoxville’s tourist districts. That day, the new national champions were crowned in the parking lot of a low-slung industrial building. Other competitors were the only crowd, aside from a news anchor standing off to the side and speaking over the medal ceremony to record the lead in to that evening’s human interest story.

The gap between the best and worst competitors was startling, as well, because the increase in funding is unevenly distributed. Groulx, Bosco, and others “who have demonstrated the potential to medal at the 2020 Paralympic Games” can live and train as full-time professional athletes in USOPC facilities through a Team USA residency program. Some top athletes also receive funding through USOPC partners, like Groulx, who is now supported by Bridgestone. But funding for athletes in earlier stages of development is far more limited.

“There’s not much [from the USOPC], not anything really, aside from a [training] camp,” an able-bodied rider named Mark-Anthony Sanchez explained to me in a phone call a couple of weeks after Knoxville. Sanchez acts as the pilot in a tandem team with Anthony Bonetti, who is blind. He said that para-cycling tends to cost more than able-bodied racing at similar levels because the entry fees are higher and specialized equipment costs more, as does traveling with it. He is trying to find sponsorships, but he and Bonetti rode a borrowed bike in Knoxville because their GoFundMe didn’t pan out. Others, like Tavian Bryant, a teacher and hand-cyclist from California, have relied on the support of charities like Team PossAbilities, which provides coaching and funding, but is more dedicated to helping those with disabilities live fulfilling lives than to elite athletic success.

All in all, while the top-level athletic accomplishments were among the world’s best, the event felt more like the amateur hockey tournaments I played in as a kid than an elite national championship. But that was also the best part about it: it felt like communal event, not a business venture.

Knoxville was the first time in my life I could talk with someone who knew what it was like to tweak a bike’s brakes for riding with one hand. Everyone — funded or not — spoke of that community spirit, of having a space for themselves in which they can compete with each other, push each other without the baggage of ableist assumptions. “Four or five times a year, you find yourself in a place where people understand what you’re going through and you’re not so much the minority,” Bryant said.

A crowd gathers in Knoxville

A crowd gathers in Knoxville

The optimistic view is that as the Paralympics become more even more elite, athletes will gain more respect and more funding. But Howe explains the growth also skews funding and interest toward those with the most moderate disabilities, changing the nature of the event.

“I was involved in the movement in the 1980s, before the IPC was created,” he told me. “At that time, there was a much greater diversity of bodies involved in the Paralympic games. As media coverage and sponsorships have developed, the acceptable Paralympian body has become much narrower.” Instead, Howe argues that the inclusionary goals of the Paralympics are better met in daily life, by focusing on things like how PE classes engage students with disabilities. It also speaks to the need for community organizations like Bridge II Sports and Team PossAbilities, which provide a more holistic attempt to address the impacts of disabilities, outside of explicitly medical contexts.

Disability studies scholar Robert McRuer makes a related argument in his 2018 book Crip Times: Disability, Globalization, and Resistance. There is an “austerity of representation,” he says, in which “flattened, nonthreatening representations of disability” are used to “obscure the workings of [economic] austerity.” He points the 2012 Paralympic Games in particular, because at the same time that the UK was publicly feting “superhuman” Paralympians, the country was performing “work capability assessments” that made thousands “ineligible for disability benefits that would allow them to live independently, access attendant services, or utilize assisted transport.” More than 55 percent of those who lost benefits ended up destitute, according to a government study. To add insult to injury, the assessments were performed by a Paralympics sponsor, Atos.

The moral of hard work and self-belief that public figures like Griffin espouse masks this dynamic. At the same time that the narrative of elite athletes with disabilities empowers many, gives them respect as competitors, it fits unwittingly easily into right-wing stories that undercut more daily needs — especially ones thriving on other forms of oppression.

“I have a double against me because I’m black and disabled,” Hassel, the wheelchair basketball player, told me. “If I don’t work super hard, they’re going to say you’re lazy, you just want to get SSI [Supplemental Security Income], sit back and get fat.” Heroic tales of individuals celebrate some, but only by excluding others.

Living with a disability, like any other minoritizing identity, means that you are something more than an individual, at least in certain conditions. The arithmetic of representation alone makes it difficult for people like Shaquem Griffin or Oscar Pistorius to just be an athlete. Their stories always mean something more, simply because stories like theirs are so seldom told. That’s especially true for others with disabilities, who just want to see someone like ourselves succeed, to know that we don’t have to accept anything less than a full human life.

But when adaptive sports enters into the business of elite athletics, those stories become something else entirely. They are stories of corporate sponsorships and media trends and global inequities. They are still stories of disability, too, of course, but they start to mean so many things at once it’s almost impossible to make any definitive sense of them.

When I told my mom that I was going to interview Abbott for this article, she made me promise that I would thank him for her.

The impact on individuals can be complicated. I don’t actually know much about my missing hand — I only asked my parents about it once, and I don’t remember their answer — but I do remember always being drawn to Jim Abbott, the Olympic gold medalist and no-hitter-throwing MLB pitcher who was missing a hand. I had five of his baseball cards, though they were mostly gifts. I dressed up as him for an elementary school biography project, though only after my dad said I couldn’t do Emmett Smith or Wayne Gretzky again.

When I told my mom that I was going to interview Abbott for this article, she made me promise that I would thank him for her. He started the gold medal game the year I was born, then skipped over the minors entirely and joined the Los Angeles Angels’ starting line-up as a rookie the following year. When my parents worried about whether I would be able to live a normal life, he was one of the things that gave them confidence.

In the memoir he wrote in 2012 with journalist Tim Brown, Imperfect: An Improbable Life, Abbott details all the calls and letters and visits he got from families like mine. Griffin has done the same, and many of the people I spoke with mentioned the role that public figures like them played. But Griffin’s story is so relentlessly positive, I can’t see myself in it at all. All I see is an NFL star — someone completely unlike me, however many fingers he has.

Talking with Abbott was different. He spoke with hindsight, years after his fastball inexplicably deserted him in what was supposed to be his prime, forcing him out of baseball and into an identity that no longer centered on being an elite athlete. Unlike Griffin, he offered a lesson in living with the ambiguity of being many things at once. The two use identical morals about the value of determination and mental toughness, but Abbott explains it with more nuance. He embraces his status as a role model, but not without noting the complications.

“Trying to be the best pitcher I can” was a “selfish pursuit,” he told me. It was about his own individual competitive drive, about athletic excellence, not about becoming a public figure and a role model for people with disabilities. Yet it could never not be the latter, too. It was only after his career started going downhill, when he first received real criticism, that Abbott realized how that identity had benefited him. “Maybe in the times I wasn’t carrying [my hand], it was carrying me,” he wrote.

That self-reflection creates obvious contrasts between how Abbott and Griffin approach their stories. Abbott explained to me that, early in his career, he started turning down awards that weren’t about athletic performance; I had to wait for the Griffins to film a video accepting a Don’t Hide It, Flaunt It award before our interview. Abbott waited 13 years after he retired to write a book; Griffin planned on writing one since middle school and published it after his rookie year. Inseparable ends with Griffin victorious, but Imperfect refuses to do the same, weaving Abbott’s greatest athletic feat — his no-hitter — into the story of his life after early retirement.

“That no-hitter ended in a triumphant moment, but that isn’t exactly life’s experience. It doesn’t stop being different. It doesn’t stop the awkward glances. You just keep going with it,” Abbott told me.

I learned that my missing hand made me no less capable so early that I was never conscious of the lesson. But that created another danger: I so badly wanted to think of myself as normal that I denied my identity as someone with a disability at all. Once, in college, I was eating a bagel when someone caught my eye and waved the same not-hand I have back at me. I was so uncomfortable being defined by my hand, I didn’t even acknowledge it. I just looked down at my food.

It wasn’t always like that — I’ve given my fair share of advice to mothers with one-handed babies in coffee shops — but that story still fills me with immense shame. I ran from the community I eventually found in Knoxville, from the community that organizations like Bridge II Sports are building. I was so afraid of my hand determining how people saw me that I let the rejection of it do the same.

I needed to see Abbott’s confident ambiguity. It felt much more honest than the other stories I see about people like me, told with the backing of corporate funders and right-wing news channels. Only then did I feel like there was space for my identity and my worldview to exist together. But maybe that’s not fair to Griffin. A constant refrain from the athletes I spoke to was that they cared less what able-bodied people thought of their stories, and more about whether they could grow support for their communities.

“People are going to ask dumb questions about disability, but in the grand scheme I’m just happy people want to take this sport and show people what it is,” Hill, the collegiate wheelchair basketball player, said.

Maybe I was also guilty of making Griffin more than an individual — that’s all I ever wanted to be, after all. Maybe it matters less who’s telling the story and more who’s listening, what truth they find in it. I'm still not sure that's right, but I no longer think my identity depends on finding a definitive answer.

At Griffin’s book signing, I hugged the two other women I saw there who had a missing hand. I was glad to see their joy at meeting Griffin, even if they’re wrong about the social impact his story will have. A few weeks later, a man flagged me down in an airport. “I have a question about your — your arm situation,” he said. “Have you heard of this NFL player who’s missing a hand?”

I said yes and put my headphones back in.

Matt Hartman is a writer from Durham, North Carolina.