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Ady Barker is “excited to be rejuvenating our democracy with thousands of [his] closest friends” — or at least that’s what he told Jon Favreau in 2017 when Barkan was a guest on Favreau’s podcast Pod Save America.
Despite fighting a terminal illness, it was his passion for a cause greater than himself that brought Barkan onto the podcast that day, and it’s that continued perseverance that keeps his work going today. Even so, Barkan — a progressive political activist with ALS — joked to a rooftop filled with his closest friends and supporters that he was really in it for the “celebrity and accolades.”
“This social justice mumbo jumbo is just a means to an end,” Barkan’s now-computerized voice rang out.
On Thursday evening, Barkan — along with his fellow filmmakers and documentary subjects — gathered at the Plaza La Reina Hotel in Westwood to celebrate the premiere of his documentary Not Going Quietly.
Directed by Nicholas Bruckman (Valley of Saints), Not Going Quietly — the recipient of the 2021 SXSW Audience Award — follows Barkan as he battles his ALS diagnosis and rapidly deteriorating mobility, all while simultaneously leading an activism campaign for healthcare reform. With the belief that healthcare is a human right for all, Barkan and fellow activist Liz Jaff joined forces to create Be A Hero, an organization that was originally founded to confront members of Congress using the power of human stories.
The two met on a plane, where Jaff ultimately ended up filming Barkan, who had just begun to lose parts of his speech capabilities, as he confronted United States Senator Jeff Flake over the GOP tax bill at the time. The impactful conversation between Barkan — an ordinary citizen struggling with his medical bills — and a seemingly callous American politician went viral, catapulting Barkan’s story overnight.
Now paralyzed throughout most of his body, as well as having completely lost his voice, Barkan’s eyes are his primary means of expression, along with a computerized voice aid that allows him to communicate verbally. Dressed on the red carpet in a “Be A Hero” t-shirt and rainbow tie-dye Crocs, Barkan — accompanied by his wife Rachael — doesn’t appear to be giving up on his fight for healthcare justice any time soon.
The evening was hosted by several speakers prior to the screening, including Favreau, who expressed his deep admiration for Barkan and the work that Be A Hero continues to inspire among activists everywhere.
“I tend to think that idealized versions of our heroes let the rest of us off the hook,” Favreau said, speaking of Barkan’s inspirational heroism. “If all we see our heroes as are our icons, without flaws, fears and doubts, it becomes easier for us to say, well, that’s not me. I can’t be that courageous. I can’t be that selfless. I can’t be that kind of person who sacrifices, who gives that much of myself to a cause.”
But Favreau emphasized that we can be just like our heroes, following in the footsteps of someone like Barkan.
“In the face of pain and suffering and even death, it is possible to find joy in the struggle for justice and equality,” Favreau said, citing one of the many lessons that Barkan has taught him throughout their friendship.
The film, an official selection of the Tribeca Film Festival in June, is executive produced by Bradley Whitford and Duplass Brothers Productions, led by Mark and Jay Duplass.
“I’m glad that I could bring the few decent white, straight men in America together so that we could all change the world,” Amy Landecker — Transparent actress and married to Whitford — joked about having introduced the Duplass brothers to her husband and the filmmakers.
Barkan even officiated Landecker and Whitford’s wedding, computerized voice and all.
“It was extraordinary,” Landecker said of the memory. “He’s got such an incredible sense of humor, he knows how to keep levity in any situation. This is a man who will not be taken down and that gives us all hope.”
She later emphasized the importance of perspective, especially during times of turbulence and uncertainty. She attributed Barkan’s presence in her life as a major factor in shaping that perspective.
“He’s just an example to us that we have more strength than we think we do,” Landecker said.
For more information on Be A Hero, visit the website here.
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