A stirring tale of activism shaped by personal suffering, Nicholas Bruckman’s Not Going Quietly follows a health care-advocacy campaign whose leader, Ady Barkan, knew he might be spending his final days of life as he knew it for the cause. Known to many for videos in which the ALS patient put lawmakers on the spot — asking them not to cut the benefits that could keep him alive — Barkan proves a highly engaging man, impassioned but funnier than a terminally ill man should be. Intimate scenes with his young family are essential to the appeal of a film whose big issues remain as pressing now as they were during filming in 2018.
Barkan, a career activist for progressive causes, had just had a son with his wife Rachael when he was diagnosed with ALS (aka Lou Gehrig’s disease). The month after he was told he likely had 3-4 years to live, Donald Trump was elected and he knew the country was “totally fucked.”
An unusually moving political doc.
Barkan claims that dealing with his insurance company was even worse than knowing he was dying: They refused to pay for a breathing machine his doctors described as uncontroversial. And of course, other sick Americans had health care even worse than his own, or none at all. When Trump’s proposed tax cuts contained provisions likely to slash Medicare and other safety-net programs, the Californian went on the road.
After a rally aiming to convince possible swing-vote Senator Jeff Flake to oppose the tax bill, Barkan was in the right place at the right time: Waiting at the airport, he met like-minded political strategist Liz Jaff, then learned they were both on a flight with Flake. Jaff filmed Barkan making his case to Flake in person, and got the video spread widely on social media. (The clip we see here could lead an unfamiliar viewer to think Flake was more dismissive than he was. The two actually had a more substantive talk than you might hope for in the aisle of an airliner.)
Repurposing a line from that talk, the activists cofounded Be A Hero, whose first campaign targeted the 2018 midterm elections. They traveled cross-country in an RV to stir the pot in 30 critical Congressional districts, helping train everyday lefties in what Barkan calls “bird-dogging” their elected officials.
Watching these sessions is a crash course in active citizenship: rooms full of nice people, training themselves to be jerkishly dogged when confronted by political doublespeak or evasion. But the film focuses equally on the costs for Barkan. We’ve spent happy time with him at home in Santa Barbara as he bonds with his sweet toddler Carl, gradually losing his ability to speak clearly; we know that the stress and effort of this trip will accelerate the disease, hastening the day when he can’t read a story to his son. Already, friends have to help bathe him at RV parks, and he seems nearly debilitated at the end of some days.
It’s painful to watch him deteriorate, but the tone is upbeat for a surprising stretch of the film, and even some more difficult sequences don’t turn it into a downer. Donald Trump is happy to do that on his own.
The nomination of Brett Kavanaugh to the Supreme Court gives Be A Hero another cause to rally against. But while in DC to make waves, news breaks of Christine Blasey Ford’s sexual assault claims. We see Barkan pivot almost in real time, slipping out of the spotlight to let a fellow activist, assault survivor Ana Maria Archila, speak out against putting an alleged predator on the Supreme Court. She too has a moment with Senator Flake, who in the end calls for a “short pause” in confirmation hearings to allow for investigation.
That was a victory of sorts in a fight that was doomed. But Election Night was a different story. In addition to helping Democrats take the House, Barkan had established himself sufficiently to have a voice in the coming months — drawing praise from people like Alexandria Ocasio-Cortez and having one-on-one interviews with contenders for the Democratic presidential nomination.
All the time, his body is falling apart. By the time Barkan gets to address a House committee about the Medicare for All proposal, he’s speaking via an eye-controlled speech generator. It’s an especially emotional moment in a movie full of them — and, back home in Santa Barbara, there are more to come.
Venue: South by Southwest Film Festival (Documentary Feature Competition)
Production company: People’s Television Inc.
Director: Nicholas Bruckman
Screenwriters: Nicholas Bruckman, Amanda Roddy
Producer: Amanda Roddy
Executive producers: Bradley Whitford, Jay Duplass, Mark Duplass, Mel Eslyn, Sam Bisbee, Nina Tassler, Joan Boorstein, Jackie Kelman Bisbee, Wendy Kelman Neu, Nicholas Bruckman, Ryder Haske
Editor: Kent Bassett
Composer: Giosue Greco