Not Going Quietly is a nonfiction biopic about Ady Barkan, who made Time’s 2020 list of “100 Most Influential People” for his health care advocacy. Nicholas Bruckman’s poignant ninety-six-minute film chronicles Barkan’s rising stature and declining health, as he becomes stricken with ALS, widely known as “Lou Gehrig’s Disease.”
The film’s title presumably references Welsh poet Dylan Thomas’s famed 1952 poem. As ALS takes its toll on him, Barkan is determined to “not go gentle into that good night.” Indeed, the activist decides to resolutely rage—not against “the dying of the light,” as Dylan wrote, but against injustice, particularly in regard to health care.
“The beauty of democracy is that it’s bigger than our individual selves.”
Born in 1983 in Southern California to parents from Romania and Israel, Barkan went on to use his Yale Law School education to fight for immigrant rights, clerk for a judge, and campaign for Democrats. He landed a job with the Center for Popular Democracy, whose mission is to “envision and win an innovative pro-worker, pro-immigrant, racial and economic justice agenda.”
In 2012, Barkan became director of that left-leaning organization’s cleverly monikered Fed Up initiative to push the Federal Reserve to pursue monetary policies benefiting low-income people.
The seemingly indefatigable organizer was a rising star of liberal politics and father of a toddler when he was diagnosed with amyotrophic lateral sclerosis in 2016. He ended up putting his activist skills to use fighting for a better health care system.
“The knowledge that I was dying was terrible,” he recalls on screen. “But dealing with my insurance company was even worse. They denied coverage of a breathing machine that I desperately needed.”
Having spent years on the political frontlines, Barkan knows his personal situation is part of a national tragedy. Instead of allowing his increasingly debilitating disease to sideline him, Barkan came to the realization that he “couldn’t stay silent anymore.”
Instead of going quietly or gently into the good night of death, Barkan helps lead the fight against a proposed GOP tax bill that would cut health care programs such as Medicaid. With the aid of a caregiver, Barkan leaves Santa Barbara, where his wife Rachael King is a professor, and goes to Washington, D.C., to lobby against the legislation.
Enter fate, in the form of a chance encounter with then-Arizona GOP Senator Jeff Flake and Liz Jaff, a veteran in running underdog campaigns. Coincidentally, both are aboard the same flight as Barkan, who proceeds to confront Flake about the pending vote on the Republican tax measure.
“This is your moment to be an American hero,” Barkan urges Flake as Jaff records the testy encounter with her cellphone. By the time the jet lands, the video has already gone viral (Our Story | Be a Hero Fund), raising Barkan’s profile. He starts appearing on cable TV programs such as Chris Hayes’s MSNBC show All In.
This spurs the #BeAHero cause and foundation, which are co-created by Barkan and Jaff. Their specialty is “bird-dogging” members of Congress: Persistently, intently hunting down and confronting politicians about their policies and votes to their faces.
As part of this effort, Barkan and other hellraisers embark on a forty-day crosscountry odyssey from the West Coast to the capital in a specially outfitted RV that accommodates the electric scooter he now needs. They barnstorm the nation to support candidates who favor funding health care and oppose those against it, such as GOP Representative Martha McSally of Arizona, who refuses to meet with Barkan and his comrades carrying “This is what democracy looks like” placards.
A staffer locks the door of the Congresswoman’s Phoenix office and apparently calls the police—all captured via cellphone.
Throughout the documentary, Barkan crosses paths with many Democratic luminaries, including Representative Alexandria Ocasio-Cortez and Senators Elizabeth Warren, Cory Booker, and Kamala Harris. U.S. Senator Bernie Sanders meets Barkan during his whirlwind jaunt and is overcome by emotion as he warmly embraces Barkan in his motorized wheelchair.
By the time Barkan and his entourage arrive in Washington, D.C., the city is embroiled in the Brett Kavanaugh Supreme Court confirmation hearings. Barkan throws his support behind sexual abuse survivors, living out the credo of: “All for one, one for all.”
Not Going Quietly is executive produced by Bradley Whitford (co-star of The West Wing TV series) and indie filmmaking notables Mark and Jay Duplass. The documentary is deftly edited between Barkan out on the stump, fighting for health care for all, and his own private fight for his fading health, as ALS consumes him. Interwoven into this is Barkan’s personal life with his adorable baby boy, Carl, and loving wife, Rachael.
“I’ve got a lot to say and not a lot of time to say it,” Barkan says at one point, in reference to his deteriorating health. As an organizer par excellence, Barkan is loath to literally lose his voice, but eventually consents to a tracheotomy so he can keep breathing. But even having this tube stuck inside his throat fails to shut him up—he testifies before Congress using computerized, eye-activated technology similar to how physicist Stephen Hawking expressed himself verbally.
In 2019, Barkan also managed to complete his 304-page memoir, Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance, with a foreword by Ocasio-Cortez.
“The movement is invigorating for me,” Barkan says in the film. “It transcends the body. The beauty of democracy is that it’s bigger than our individual selves.”
And the beauty of Not Going Quietly is that it pays homage to those human beings who take a stand for righteousness and continue to fight the good fight, no matter what.
Not Going Quietly theatrically opens August 13 and will air in January on the PBS series POV. For details see: NOT GOING QUIETLY (notgoingquietlyfilm.com).