Progressive activist Ady Barkan says his ALS has increased his platform
Updated January 30, 2022 at 9:26 PM ET
A new documentary is giving audiences an intimate view of the political and personal struggles of one of the country's best-known progressive activists.
Ady Barkan first came to national attention from a 2017 viral video where he confronted then-Sen. Jeff Flake about the Republican tax bill. The following year he was arrested in the Russell Senate Office Building while protesting Brett Kavanaugh's nomination to the Supreme Court. He interviewed Democratic presidential hopefuls on the 2020 campaign trail and went on to speak at the 2020 Democratic National Convention.
In 2016, Barkan was a young husband and father and a rising star among progressive activists when he was diagnosed with the neurological disease called amyotrophic lateral sclerosis, or ALS. It's also commonly known as Lou Gehrig's disease and leads to the rapid loss of motor function and often early death.
Barkan has advocated for a number of progressive causes, but spends a lot of his time pushing for a single-payer, "Medicare for All" health care system. His group, Be a Hero, supports a single-payer bill in California. He also advocates for policies to help people with disabilities, including home care.
"I have found great purpose and meaning in this struggle," Barkan tells NPR. "It has brought me so many relationships and so much joy. It has been worth it, even though the victories are too rare."
The documentary Not Going Quietly, from PBS POV, gives audiences an intimate view of Barkan's political and personal struggles. The film begins shortly after his diagnosis and follows Barkan as his disease and his activism both progress and as he tries to keep some semblance of family life.
Director Nicholas Bruckman and Barkan talked with NPR's Michel Martin about what inspired the film and Barkan's story.
Barkan has lost his ability to speak and is only able to talk with the help of technological intervention. In order to help have the conversation in something like real time, all questions were sent to him ahead of time.
On why they wanted the make the film
Nicholas Bruckman: So in early 2018, I got a call from Liz Jaff, who became Ady's political strategist. And she said to me, "I just met this guy on an airplane and I filmed him talking to the senator. And you should check out this clip because it just went viral." ... I flew out to Santa Barbara to meet him. And within about five minutes of talking to him, I realized he was the most funny and graceful and resilient and fascinating person I'd met in the last decade.
Ady Barkan: My wife Rachel and I agreed to film the documentary because we thought it would be a good memento for Carl when I'm not around anymore. Of course, Carl and Willow know me as their silly dad, but I also want them to be able to know about my work and my politics and how their existence motivated me to fight for a better world.
On how ALS has increased Barkan's platform
Barkan: I learned early on that my having ALS forces people to listen to me with newfound attentiveness. The paradox of my situation has been that as ALS has made my voice weaker, more people have heard my message. As I've lost the ability to walk, more people have followed in my footsteps.
Organizing is about using the resources at your disposal to build the power you need to accomplish your goals and ALS is unfortunately very much at my disposal. And I found that I could help build power for the progressive movement by hearing my voice. So that's what I've tried to do and what I hope the film will help accomplish even further.
On Bruckman's experience following Barkan on the road as the disease progressed
Bruckman: Obviously you know, becoming really close to Ady and seeing somebody you care about go through a disease like ALS, this is really difficult and really painful. I know this sounds big, but I really believe that Ady is one of the great civil rights leaders of our time. I think we think about some of the greats in history and what we would have done had we been walking alongside them in their eras.
And I felt that when I was with Ady on the road that this was my duty to kind of amplify his words. So there wasn't really ever a question of stopping. There were difficult moments, but you know, I'm so grateful we were able to get the movie out into the world this way, and so grateful that Ady's still here not only to celebrate the release of the movie, but that the movie can support his ongoing work. And I think his best work is still ahead of him.
On what people should take away from the movie
Barkan: I hope people come away from the movie understanding that I found great joy and meaning in the struggle for justice, even as the illness has paralyzed my body. Being part of the movement has given me purpose, a community and the chance to nudge our society in the right direction. It's allowed me to transcend my dying body and find personal liberation. And I honestly don't think those things are just for me. That purpose, that opportunity to give back, those are things available to everyone who strives to guarantee human dignity for all people.
I hope that's what those who watch the movie take away from it. And I hope they get involved as a result. I don't think they'll regret it.
Kira Wakeam and William Troop produced and edited the audio interview.
Copyright 2022 NPR. To see more, visit https://www.npr.org.