Disability isn’t so bad — if you happen to be rich and famous. Such is the message of Clay Tweel’s documentary Gleason, which documents retired NFL linebacker Steve Gleason’s diagnosis with ALS and the ensuing decline in his physical health.
Disability isn’t so bad — if you happen to be rich, famous, and not required to work. Such is the message of Clay Tweel’s documentary Gleason, which documents retired NFL linebacker Steve Gleason’s diagnosis with ALS and the ensuing decline in his physical health. Tweel’s intent seems to be to remind us that disability doesn’t define a person. However, the story Tweel chooses to tell is a cliche: the heroic disabled person who inspires others by rising above his disability. To serve this narrative, Tweel elides all of the uncomfortable practicalities that managing a disability requires. This trivializes the very real difficulties of living with a disability.
For most people, discovering that they have or will have a severe physical disability isn’t just life-changing but stressful, emotionally and financially. The equipment and assistance required to manage a disability is expensive, even with health insurance. And when your ability to work is challenged while your spouse is saddled with caretaking duties, sources of income become strained as well. Even people with strong support systems tend to suffer from depression or anxiety.
Such practicalities don’t faze Gleason. His wealth insulates him from a lot of the usual problems of managing a disability, from financial planning to figuring out how he and his wife can both have fulfilling careers (neither work). On an emotional level, Gleason can turn to his scores of fans who tell him how heroic he is for overcoming his disability.
The film spends most of its runtime lionizing Gleason for his optimism, but in fact his privilege has allowed him to delay dealing with reality. Gleason often refers to himself as a “hero” and refers to speaking out about ALS as his life goal. Gleason and Tweel buy into this narrative because Gleason’s privilege makes it easy for them to do so. Because he’s already famous, he’s able to cope with his body’s decline by telling the world about ALS. Financial planning isn’t a real problem. His wealth and fame have cushioned the blow, enabling him to coast along with denial. Coping with disability means accepting that it’s your new reality, but Tweel rarely shows footage of the daily grind. The one scene depicting the arduous process of getting Gleason ready for bed is sped up to fast motion so that the audience doesn’t have to vicariously experience the hard parts. It’s not optimism we’re seeing, but denial.
Yet Tweel never once questions this hero mythology and why it’s often assigned to people with disability. There’s none of the nuance that characterized Alan Zweig’s documentary HURT, which exposes the very real dangers of the hero narrative. HURT follows Canadian Steve Fonyo who lost his leg to cancer when he was a teenager. Mimicking Terry Fox, Fonyo ran from coast to coast to raise money and awareness for cancer, on his prosthetic leg. He needed the attention and the glory to soothe his depression — but the relief was short-lived. When he had to go back to real life, he still expected to be treated like a hero. He spiralled into homelessness and despair when the public proved unwilling to accept his flaws. Fonyo’s investment in being a hero and not his disability that ultimately destroyed him.
Despite Tweel’s rose-coloured lenses, there are some genuinely thoughtful moments in the film. Tweel captures how the Gleasons adjust to being a family with a person with a disability in it. These moments are genuinely warm and touching. Gleason and his wife start to incorporate the practices of managing his body into their daily routine, even involving their son. The practicalities become part of the family bond. Tweet doesn’t shy away from how the physical and emotional are connected: when Gleason loses the ability to talk and to hold his wife, it puts a strain on their relationship until they can find ways to be physical and loving within the confines of his disability.
Tweel asks us to applaud Gleason’s charitable foundation, which filled all the requests for speech devices coming from people with ALS once Medicare stopped covering them. But Tweel doesn’t take the next step to ask why Gleason’s foundation was necessary. Should average Americans be dependent on a former football player in order to get the medical devices they need? Most people with ALS need help with basic medical expenses: the kind of professional medical assistance that Gleason receives is unaffordable for most people who need it. The surgery that saved Gleason’s life leaves him requiring round-the-clock care — a procedure most people forgo because the long-term care costs are too great.
This year, Sundance programmed two films about disability festival: Gleason, an uplifting hero narrative, and Between Land and Sea, about the noble suffering of the disabled. Both are cliched, surface-level responses to disability, largely meant for the able-bodied. As Between Land and Sea is about a poor man, it addresses the financial strains of managing disability. But it concludes that life isn’t worth living if you aren’t able-bodied. Gleason has a more optimistic outlook, because Gleason is privileged: a decline in his physical abilities doesn’t mean he’s trapped in his house and a burden on those around him. Both narratives are condescending and dehumanizing. It’s 2015, and we deserve better.
This review was originally published on Feb. 10, 2016 as part of Seventh Row’s Sundance Film Festival coverage. It has been republished for the film’s US release.