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Activist Ady Barkan is a father, husband, attorney and activist whose life changed dramatically when, at 32, he was diagnosed with ALS. This neuro-degenerative disease impairs movement, speech and breathing, causing Ady to fight for a better healthcare system as his life – his activism is the subject of Not Going Quietly, a new documentary from Nicholas Bruckman.
Not Going Quietly
Director: Nicholas Bruckman
Release date: March 17, 2021 (SXSW)
Barkan never planned to turn his family’s story into a campaign. Married to Rachael, a Professor of English, the pair was living in California with their young son, Carl. The couple met while studying at Yale and Barkan, a law graduate, was moving in activist circles before the diagnosis. Naturally, he was afraid that losing his voice would mean losing part of his identity and the ability to speak authentically. But, rather than lose his passion for the medium and his desire to speak up for injustice, he became an even stronger voice when he started touring the States with his message for more affordable, accessible healthcare.
He and his family had struggled to gain the approval of the authorities for a critical, life-saving ventilator as it was classed as ‘experimental’ — just one of the many obstacles ALS sufferers faced on top of their health conditions. This need sparked a realisation that healthcare reforms were desperately needed. The film tells the story of their campaign #BeAHero, which garnered national recognition and solidarity.
Like most great campaigns, Barkan’s started by accident. On a flight, he overheard political strategist Liz Jaff talking “a mile a minute” about videos going viral online. He struck up a conversation, explaining his situation. By coincidence, Arizona Senator Jeff Flake was on the same flight, and so in a wild moment, Liz and Barkan teamed up to question him about his deciding vote on Trump’s Tax Bill, threatening to dissolve Medicare and Medicaid. Call it doorstepping or subterfuge, but their impromptu filmed interview went viral with the hashtag #FlakesOnAPlane, and Barkan’s campaign was born before the flight landed.
Bruckman’s documentary, executive produced by the Duplass brothers, is an examination of a debilitating illness but also people-power. Its standpoint is that, in a democracy, everyone deserves a voice. It’s not always easy to believe: as Barkan’s campaign grows in momentum and he starts to lead crowds to the offices of elected officials, they’re met with hostility on more than one occasion. At a particularly charged meeting outside Congress offices, women come forward and share their testimonies of sexual harassment as allegations of misconduct are levelled against Brett Kavanaugh during the recent presidential race.
It’s easy to fall into the trap of thinking that the film is just a bit of political spin. A news anchor poses the scenario to Liz in an interview, some commentators would say she’s exploiting Barkan’s position for her own political gain. Sadly, these situations are used as an opportunity for leverage. But however it may be viewed, I see it as a genuine partnership between people who care about the same cause and want to see healthcare reforms to improve the lives of millions of disabled people in the US.
They certainly have a skilled team on board. Barkan describes Liz as a brilliant, creative steamroller, and it’s their teamwork, along with their entire campaign team’s perseverance, that propels them to national fame. On the flipside, though, is the fact that they have to spend so long away from Rachael and Carl. Barkan visibly misses them and audibly breaks down after a few weeks on the road and only video calls with his young family. “The hardest part of this,” he says, “is missing all the time with Carl.” Even as the toddler begins to develop long-term memories and learns to speak, his father’s voice is diminishing: Barkan starts writing a memoir so that his son will be able to know his father in his own words.
After all, this is a film — to avoid cliche — about telling people’s stories. Late into his campaign, Barkan meets another man in his 30s diagnosed with ALS. He and his partner are expecting a child, and they acknowledge how difficult life has been for them. He says to Barkan, “I know it’s patronising to say you’re an inspiration, but to suffer from ALS and advocate for it is quite something.” It’s not an isolated incident; when Barkan suggests having a stand-in to read his speech when he has to start speaking through a neuro-operated machine, Liz immediately calls out the BS. “It’s glossing over the problem,” she says, referring to his speech loss. “We need to hear this. This is the reality.”
Not Going Quietly captures some of the highs and lows of the tour around the country: the lows of ALS and separation from family; the highs, meeting with senators and congressmen. Barkan has a chance to interview 2020 election candidates with impressively pertinent questions. Kamala Harris, Bernie Sanders, and Joe Biden all make an appearance in the film, showing the scale of the problem and the widespread support from across the country. It’s a film of extremes, and the lengths people are willing to go to support critical legislation.
The cinematography and editing can’t be faulted, working together to craft the story of a family of strangers who you instantly begin to care about and want to succeed. Bruckman has allowed space and time to tell Barkan’s story without it falling into a generalisation or statistic. Not Going Quietly is a timely film both in message and medium, encouraging each of us to consider everything from life-altering decisions in government to our relationships with family and friends. In Barkan’s own words: “I may be dying, but I’m not going quietly.”