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Jan

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Disability And Humanity In “Swim Team”

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Directed by a Columbia alum!

The Heyman Center for the Humanities is hosting “Explorations in the Medical Humanities,” a series of talks, films, and events that strive to bridge medicine and the humanities. Yesterday, Bwog sent writer Riya Mirchandaney to “Swim Team,” a film about an award-winning swim team consisting of boys on the autism spectrum. Here’s her review of the film.

As someone who loves the humanities, it’s obvious that the science event I’d chose to attend would be a film screening. If I learned anything from watching “The Great Sperm Race” in junior year biology, it’s that movies are a fantastic vessel for disseminating (ha, ha) scientific information in a thoughtful and accessible way. Who wants to listen to a dreary lecture when they could learn just as much from sleekly-edited video montages and Neil deGrasse Tyson’s sultry voice?

But “Swim Team,” the award-winning first feature-length documentary by Columbia alum Lara Stolman, strangely lacking in lab coats and medical terminology, was a science documentary of a completely different breed. It was shown as part of the Medical Humanities series sponsored by the Heyman Center for the Humanities.

The film begins with an extended underwater shot. A boy swimming. The swim captain encouraging his teammates. The coaches—the mother and father of one of the swimmers—introduce the scene: this is a special olympics team, and all of the boys are on the autism spectrum. They are the New Jersey Hammerheads.

As defined by the most recent edition of the Diagnostic and Statistical Manual, autism spectrum disorder is characterized by deficits in social communication and interaction, as well as by restrictive and repetitive patterns of behavior, often accompanied by intellectual and language impairment. In New Jersey, with the highest rate in the country, 1 out of every 26 boys is diagnosed with autism.

The film follows three of the swimmers: Mikey, Robbie, and Kelvin. As the coach notes, swimming is a “white sport,” but these are mostly low-income boys of color. But perhaps even more strikingly, autism is often considered a “white” disorder, with white children 30% more likely to be diagnosed than Black children and 50% more likely than Hispanic children (American Academy of Pediatrics, 2014).

The film spends little time on information and facts, focusing instead on the lives and stories. We are with these three boys and their parents at the YMCA, in their homes, at school or at jobs, at swim meets, in stores. There is an intimacy and realness to how their experiences are portrayed—this isn’t Hollywood; this isn’t Rain Man.

Some of the most profound moments involve Robbie and his mother, who dropped out of college to take care of her son when he was diagnosed with autism. In one scene, Robbie and his mother are making dinner when he mentions that they talked about sex in health class. His mother is taken aback, unprepared for this moment. “I don’t feel like talking,” says Robbie. It is in this scene that Robbie seems both like a neurotypical teenager who just doesn’t want to talk about sex with his mom and very much like a young boy with autism—it is clear that he doesn’t really understand what sex is.

Later, his mother finally tells Robbie that he has autism, and we watch the whole fraught conversation. His mother asks, “Do you know what autism is?” Robbie shakes his head. The camera pans to Robbie playing, repetitively with his sock. She tries to explain his disability to him. Finally he says, “I can handle it. I’m older now.”

Mikey’s father talks about the heartbreak of his son crying and asking “Why did God make me different?”

Kelvin, in addition to autism, has Tourette Syndrome, a neurological disorder characterized by uncontrollable tics. The camera follows Kelvin’s mother as she shows us the various posters in their house, as well as the holes in the walls that the posters are attempting to hide—all results of Kelvin’s fits of anger. “Medication has no impact,” explains his mother, but the swimming helps.

All of these boys are on the cusp of adulthood, grappling with the notion of “aging out.”

Kelvin works at a state-funded job program, cleaning at a small local theater. We see him washing a soda dispenser while singing the words “job security” to himself. “I’m thirty-two!” he says to the camera. Then, “Ha, no, I’m just joking.” “I’m pregnant!” he exclaims, but he is joking again.

Mikey’s parents meet with a disability lawyer as their son is about to turn eighteen. The lawyer wants to know if Mikey understands the value of money, if he is capable of making decisions for himself. His parents are not quite sure. Because Mikey is disabled, his parents can file for guardianship if they think he is unfit for independence. They can’t afford to put Mikey in transition private school until he is twenty-one, so he graduates at eighteen. Overlaying a cheerful video of Mikey and his prom date, his mother tearfully explains that no one told her that she could apply for state funding for Mikey’s transition school. They have missed out on a crucial opportunity for their son.

Robbie’s mother, at the advice of Mikey’s parents, applies for state funding to allow Robbie to continue to receive the educational resources he needs. As a senior, he is the captain of his high school swim team.

Swim meet after swim meet, the Hammerheads dominate the competition. A flame is alit at the Special Olympics state finals, and because of his performance, Mikey is chosen to compete nationally. He wins two gold medals, a silver, and a bronze. “He was never supposed to talk, write his name, swim,” says his father, “nine years later and look what he’s doing.”

The documentary was painstakingly human, which struck me. This was the “Medical Humanities,” but where was the medicine? On the screen were the boys, parents, coaches, teachers, lawyers, and friends, but never doctors, therapists, nurses, or researchers. The film seemed to highlight the failings of medicine, without actually featuring any medicine itself. As Robbie’s mom tries to explain autism to him, she relies on dry technical terminology, but clearly the words cannot convey the complexity of the meaning of autism in their lives. And perhaps that is the whole reason this medical humanities series exists in the first place. Disability and illness can be talked about with ease and ambivalence in a medical setting, but they are not usually lived with either. The need for a bridge between the medical and the human is profoundly present.

image via Swim Team The Film

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