Steve’s body is failing, but his consciousness is not, and it’s tough to watch him slowly get locked inside his deteriorating body ... and even tougher when you realize that he too is watching. There are moments of such raw, intimate anguish in this film that you can’t help but turn away. But Gleason also finds purpose in establishing Team Gleason, a nonprofit designed to help others with ALS improve their lives and get access to critical technology. Slowly, he learns to use his wheelchair and the eye-tracking software that will allow him to speak in something resembling his own voice — thanks to the voice-banking he did before losing his speech entirely. Once he begins to talk again through this machine, his words are startlingly eloquent and nuanced.
Steve’s dedication to his cause comes with its own trade-offs. Early on, he finds himself spending more time with the nonprofit than with his family, much to his wife’s concern. But at other points, Michel herself struggles with the fact that her husband’s illness, as well as having to raise a young child, requires her to be a full-time hero; we see her feeding Steve with one hand and Rivers with the other. The film never flinches from the grueling tasks and the patience involved in taking care of a person with ALS.
So while Gleason is the slick, moving, sincere documentary you might expect from this material, there’s something else going on beneath the Oscar-friendly polish: This is a remarkably physical film. Partly, that’s by necessity, given that the very subject matter is a man’s body breaking down. But Tweel goes above and beyond in grounding his movie in the realm of the corporeal, in the world of physical daring, physical success — and physical abjection.
In the early stages of his disease, when Steve can still walk and talk but has lost the ability to run, his father takes him to a faith healer; after the laying on of hands, Steve gets up, tries to run, and falls. It’s hard to tell if he’s doing it out of sincere belief or as a way to show up his father, with whom he’s always had a contentious relationship; Michel watches in rage. But scenes like this and later ones emphasize how important physicality becomes for Steve the more he loses it — how much he needs to hug a family member after a fight or to hold his wife and child, however briefly, at the end of the night. This film makes sure that we feel his loss.