EXCLUSIVE: Not Going Quietly, the award-winning documentary about progressive activist Ady Barkan and his battle with ALS, will begin streaming on Hulu this Friday.
Nicholas Bruckman directed the film, which won the audience award and a special jury award at the 2021 SXSW Film Festival, earned three IDA Awards nominations, and honors for Barkan at the Critics’ Choice Documentary Awards and the Cinema Eye Honors Awards. Not Going Quietly was released theatrically by Greenwich Entertainment last August and later aired as part of the PBS series POV before it was acquired by Hulu.
Barkan was diagnosed with ALS, the progressive neurodegenerative disease, at the age of 32. He hasn’t let his declining physical condition deter him from making an impact on national politics, becoming, as Politico described him, “the most powerful activist in America.”
He fought for passage of President Biden’s Build Back Better legislation, which made it through the House but failed in the Senate for lack of support from Sen. Joe Manchin, Democrat of West Viriginia. Among other things, the bill would have provided funding for health care in residential and community settings for people like Barkan with chronic conditions that require significant aid from medical caregivers.
“I was dealt a tough hand, five years ago, when I was diagnosed with ALS,” Barkan said at a Q&A for the film in Washington D.C. last December. “But many people are dealt tough hands. Our nation is dealing with tough hands right now, and the question is how we respond to that adversity.”
Barkan first gained wide notoriety in 2017 when he confronted then-Arizona Republican Sen. Jeff Flake on an airplane, questioning his support for the Trump-backed tax reform bill that threatened to trigger huge automatic cuts to health care and jeopardized his own care. The exchange went viral after a video of it was posted online. In the following years he was arrested over half a dozen times at various protests.
Bruckman filmed Barkan at many of those protests, and followed him as he crisscrossed the country in 2018 supporting Democratic candidates in a successful effort to flip the House from Republican to Democratic control. The director also filmed poignant scenes with Barkan, his wife Rachael and their young son Carl at home on the West Coast.
“I flew out to Santa Barbara, met him, and the very first thing I ever shot with him is in the movie when he’s [shirtless]… and Rachael is fixing his hair,” Bruckman recalled during a Q&A in Los Angeles last summer. “And that was the moment I had an inkling there was something more to this story because of the resilience and grace and humor with which Ady has turned this disease into a weapon to create a better world for his son and for all of us.”
Among the executive producers of Not Going Quietly are Bradley Whitford, Jay Duplass, Mark Duplass, Denise Di Novi, and Nina Tassler. Amanda Roddy produced and co-wrote the film with Bruckman.
“[Barkan] did a really incredible job putting his body and his life on the line in order to fight for this country,” Roddy said at last summer’s L.A. Q&A. “You think, if he can do it, anyone can do it. Anyone can do something and that it really is a matter of life or death for so many people and we all have to commit something in order to fight for our democracy. We really can’t be bystanders.”
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