This is a touching if a tad treacly portrait of Ady Barkan, an inspiring American activist who has the terminal neurodegenerative disease ALS (amyotrophic lateral sclerosis AKA motor neurone disease). Filmed over several years and directed by Nicholas Bruckman, it starts with Barkan, originally a lawyer, already well into his career as a protester and campaigner, particularly on issues that affect people on low incomes. When first met he seems like a loving family man, devoted to his wife Rachael, an academic, and their adorable baby son Carl. But then he’s diagnosed with ALS, and naturally everything changes. The film includes a tearful, wrenching clip he shot himself in the middle of the night after he found out and couldn’t sleep for worry. His health seems to deteriorate quickly – though perhaps that’s partly an effect of the cinematic compression of time. Even so, as the indominable little Carl gets bigger and stronger and the Trump administration wreaks more and more havoc on the nation and the world, Barkan gradually loses the ability to walk, talk or even breathe by himself.
Amazingly, that doesn’t stop him from campaigning; he shifts his focus on to the threats to public healthcare and provision for people with pre-existing conditions like himself. In a famous viral clip filmed by friend and fellow activist Elizabeth Jaff, he debates the issue with Republican senator Jeff Flake on a plane. Although he doesn’t manage to persuade Flake to change his vote, the encounter triggered Barkan’s Be a Hero campaign which seeks, in addition to advocating for various progressive issues, to influence potentially persuadable Republicans such as Susan Collins to vote against, say, Brett Kavanaugh’s appointment to the supreme court. The struggle ends up cornering Flake in another confrontation, this time involving Ana Maria Archila in an elevator, cheered on by Barkan.
Smart, funny and endearingly sweary even when he loses the power to speak without computer assistance, Barkan is a charismatic character who’s easy to like, although one wonders how much the documentary crew resisted showing anything that might dent the halo the film sets round his head. At one point, Barkan talks about his own feelings of guilt for being out on the road so much and missing his children’s early years (Rachael has a second child in due course); maybe it wouldn’t have hurt to probe further what price people like Barkan pay for their own heroism.
• Not Going Quietly is released on 18 March in cinemas.
