Diagnosed with ALS in 2016, Barkan is also the subject of a new documentary, Not Going Quietly, which captures his determination to keep pressing forward on progressive causes, particularly healthcare. even as he loses muscle function and the ability to speak. An excerpt of the film will be shown along with Barkan’s two-minute remarks.
“I wanted to convey two ideas: That defeating Trump is essential, even if you don’t love Joe Biden, and that none of our struggles will be over after this election. We need to keep on keepin’ on,” Barkan told Deadline in response to emailed questions.
The movie, with Bradley Whitford and the Duplass brothers as executive producers, follows Barkan as he battles ALS, also known as Lou Gehrig’s disease, and continues his activism on healthcare and other progressive causes. One of the story arcs: As Barkan starts to lose his voice, he becomes a more influential figure. Barkan now speaks via eye gaze technology.
“At the core of the film, and the core of Ady’s story, is the question of, ‘How do you turn despair and tragedy into hope?” said director Nicholas Bruckman, who made the film along with producer Amanda Roddy.
Barkan, 36, already was involved in progressive activism when he gained national attention in 2017.
Having been in Washington, D.C., that December to protest against the Republican tax reform plan, he confronted one of the lawmakers who happened to be on his flight back out west: Jeff Flake.
The Arizona senator, a critic of Trump’s who had already announced that he would not seek reelection, nevertheless was supportive of the tax reform efforts. In a video of the encounter that drew wide attention (and is featured in the documentary), Barkan warned him that the legislation would trigger healthcare cuts, including treatment that could help him.
“I will need to go on a ventilator to live. But this tax bill is going to force $400 billion in automatic cuts. So what should I tell my son, or what should you tell my son, if you pass this bill and I can’t get a ventilator?”
“You can save my life. Please remember this conversation,” Barkan said.
Flake voted for the tax reform bill, which ultimately waived the rules that would have mandated the cuts. But Barkan created a political action committee, Be a Hero, that backs progressive candidates and causes. He campaigned across the country in the 2018 midterm elections, in which Democrats won back the House, and helped lead an effort to try to block the confirmation of Brett Kavanaugh to the Supreme Court. He testified before a congressional committee last year urging support of Medicare for All, and a number of presidential candidates sought his endorsement this cycle.
Barkan met the filmmakers after a fellow activist, Liz Jaff, co-founder of Be a Hero, and hired him to shoot some political ads just as they were launching the Be A Hero PAC.
“We hit it off, and we seemed to share similar politics and aesthetic tastes,” Barkan said. “It was an honor to hear that he wanted to spend his time chronicling my life, so I said yes.”
Roddy said that they originally thought that the project would focus on Barkan’s work on the midterm election, but the story “changed many different times in many different ways.” She said that they did not realize that Barkan and his wife, Rachael King, were planning on having another child, a daughter who was born in 2019.
“It is not entirely surprising that he got the speech” at the convention, Roddy said. “But if you asked me two years ago I would say probably not. I think that neither of us could have foreseen that this would lead him to a primetime spot at the DNC.”
Barkan said that he has not had any more contact with Flake — even if they are, a bit ironically, both supporting Biden this cycle.
“That was the only conversation I ever had with him,” Barkan said. “I am not surprised that he is voting against Trump. But I still disagree with his worldview and the most important votes he took, like confirming Kavanaugh to the Supreme Court.”
During the recent Democratic primary, candidates sought his endorsement. He gave his support to Joe Biden last month, even though they disagree on one of Barkan’s signature issues, Medicare for All.
Barkan also has a different take that you may expect on the completed documentary.
“It was funnier than I expected,” he said. “Maybe that’s just because I crack myself up. I expected it to be sad and hopefully inspirational, but I didn’t think it would be a comedy. And it kinda is.”
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