Not Going Quietly

A moving, and, at times, enraging, portrait of an American activist, Not Going Quietly is an emotional documentary about an inspiring figure. Ady Barkan was an activist and organiser for a variety of causes, but after a diagnosis of a degenerative condition his fight, and his time to fight it, changed dramatically.

Amyotrophic lateral sclerosis, in the States known after baseball player Lou Gehrig and in the UK not for perhaps its most famous patient, Stephen Hawking, but as motor neurone disease. Nicholas Bruckman's film follows Ady long enough that we see not just the impact upon him but the changes wrought in those around him. Hard decisions about whether to try to retain talking or walking, the trade-offs that will likely require tracheal surgery.

Through it all, campaigning to reform the horrors of American medical bureacracy. One of the sparks is when the family's insurance denies him a bit of equipment as 'experimental'. His wife, Rachael, is a university professor, and one supposes it doesn't matter who and how their care is provided only that it's part of a melange of terrifying numbers and even more callous decisions. That the machine in question has been prescribed by that doctor for six years without incident is neither here nor there. The decision was made, and the options are to pay, or to die.

There's discussion of Medicaid, the whole notion of 'pre-existing conditions' is mentioned but not further explained, and through it all we see only the foothills of the protection rackets of American medicine, the ever bolder blurring of distinctions between rent-seeking and hostage-taking. As his son Carl grows bigger Ady shrinks, progressively thinner, stooped, but ever driven to use what time he has to help others.

It's inspiring stuff, but perhaps even more bleak because this is historical, and dramatic irony is an inescapable consequence of a familiarity with American politics. In an effort to save elements of the Affordable Care Act after Trump's election, Barkan challenged Arizona Senator Jeff Flake on a flight. Filmed by Liz Jaff, this went viral, and gave Barkan impetus for a campaign of his own. Including a 40 night tour of the US visiting key electoral battlegrounds, it's an astonishing crusade made all the more powerful by the toll it takes on him.

There are lessons in 'bird dogging' candidates and incumbents, interviews with both as well. A better than passing familiarity with the American system(s) of governance will help because not all of it translates. That awareness then makes elements more tragic, especially the work to prevent Brett Kavanagh's confirmation to the Supreme Court.

There are better guides to the way the US monetises mortality, but the fact that there's more than one movie about it is a good indicator as to how messed up the situation is. Escape Fire and Sicko are both in their own way polemic documentaries, but even arrant nonsense like Queen Latifah's Last Holiday is predicated upon healthcare costs. In that version it's not the misdiagnosis that has her resigned to her fate, it's that it's not economically viable to try and cure her.

However welcoming and participatory those we see on screen are, this cannot help but be intrusive. It's salty too, not just in language but tear-jerking in places. Ady's gallows humour is one thing, but he also knows when to stand back, to keep still. I did find a moment where (another) white man talks about it being the "first time [he] felt [he] wasn't included in the people our country cares about" striking. The film does a much better job of navigating intersectionalities, if only because it has Ady as a guide.

He's an inspiring figure, and his one voice being silenced makes the others speaking with him stand out more. Gruelling pace doesn't mix well with campfire treats like S'mores and I'd lost track of which state they were in when he relaxes with cannabis. It doesn't really matter, it just serves to highlight the absurdities of American drugs policies. His family are strong but the focus is on Ady, most often at the centre of the screen. When attention falls elsewhere, however, the film has some of its most powerful moments.

This is only Bruckman's second feature, but he has a variety of other credits. There's a lot of people involved here, one might even spot some familiar names in the producer credits. Giosue Greco has scored an Oscar winning short (Period. End of Sentence) and quite a bit of TV, including a US remake of Korean medical drama The Good Doctor. There's some moments where the music feels heavy handed but this is perhaps as much a recruiting tool for the ongoing fight as it is a tribute to one of its heroes.

There's a paraphrase attributed to Rebecca Solnit that Ady can't finish, so I'll do it for him. Hope is a hammer we use in an emergency, to break the glass, to raise the alarm. Kafka suggested a book must be similarly used upon the frozen sea within us. The acts of Ady are many, but ice buckets are the least of his challenges. This is stirring stuff, but one suspects it suffers because its audience likely already knows its subject, or at least his struggle, by another name.