Progressive activist Ady Barkan says his ALS has increased his platform

Transcript

MICHEL MARTIN, HOST:

You may have heard about Ady Barkan, or maybe you've seen him, for example, in that viral video where he confronted then Senator Jeff Flake about the Republican tax bill, or when he was arrested in his wheelchair in the Russell Senate Office Building while protesting Brett Kavanaugh's nomination to the Supreme Court. About that wheelchair - five years ago, Barkan was a young husband and father and a rising star among progressive activists when he was diagnosed with ALS. That's the neurological disease sometimes called Lou Gehrig's disease that leads to the rapid loss of motor function and often early death.

Facing his own mortality and also the frustration of fighting for his own health care needs, Barkan decided to use whatever time he has left to fight for health care reforms for all Americans. Now there's a new documentary from PBS' "POV" that gives us an intimate view of Barkan's political as well as personal struggles.

(SOUNDBITE OF DOCUMENTARY, "NOT GOING QUIETLY")

ADY BARKAN: My whole body is going paralyzed, but losing my voice is far more consequential for me than losing my ability to walk. I've got a lot to say and not a lot of time left to say it in.

UNIDENTIFIED CHILD: (Unintelligible).

RACHAEL KING: What is Abba (ph) doing?

UNIDENTIFIED CHILD: Medicine.

BARKAN: Hey, Carl. Yeah, medicine.

MARTIN: The film begins shortly after his diagnosis and follows Barkan as his disease progresses but also as his activism progresses and as he tries to keep some semblance of family life. The film is directed by Nicholas Bruckman, and both he and Ady Barkan are with us now to tell us more about it.

But before we begin, I need to share something with you. We've spoken with Ady before. And if you heard it, then you know the Ady has lost the ability to speak without technological intervention. So in order to have this conversation, we did something we would not do otherwise and we do not do otherwise. We sent him questions ahead of time. That's the only way we could have this conversation in something like real time.

So with that being said, Ady Barkan, welcome back. Thank you so much for talking with us once again.

BARKAN: Thank you.

MARTIN: Also with us as Nicholas Bruckman. Nicholas, welcome to you as well.

NICHOLAS BRUCKMAN: Thank you, Michel. It's an honor to be here.

MARTIN: So, Nicholas, why don't we start with you? Why did you want to make this film, and how did it come about?

BRUCKMAN: Yeah. 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. And we want to make a short film, which is what I do to support my documentary habit, about our health care campaign.

And I really didn't know what to think of it. I thought maybe this was kind of a fundraiser about Ady's illness. But I flew out to Santa Barbara to meet him and, within about five minutes of talking to him, realized he was the most funny and graceful and resilient and fascinating person I'd met in the last decade. And at the end of that interview, which was really for a short promo film for his Be a Hero campaign, I said, Ady, I think there's a bigger story here. And if we're going to do it, we have to move quickly because he was already losing his voice at that time.

MARTIN: Ady, why did you want to make this film?

BARKAN: Thank you for having us on the program. My wife Rachael and I agreed to film the documentary because we thought it would be a good momento 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.

MARTIN: You know, Ady, you also say in the film that the paradox of your life now is, quote, "the weaker I get, the louder I become," unquote. That's a reference to the fact that you lost your original voice, but you have gained a different voice. And I don't think it's a stretch to say that you've probably reached more people since you've been living with ALS than you did before. And I'm just wondering how you're sitting with that.

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 carrying my voice. So that's what I've tried to do and what I hope the film will help accomplish even further.

MARTIN: You know, the other conundrum here, Ady, is that the work you are doing in part to save your life and other people's lives is taking a tremendous toll on your body and, frankly, the time that you have left to spend with your family. I mean, I think people would understand if all you did was sit in the sun and watch your adorable kids. I'm just wondering how you decided it was worth it, especially because, to be brutally frank, you've won some tactical victories - I mean, certainly that you were a part of the movement to stave off efforts to kill the Affordable Care Act. But we are not closer to universal health coverage. People are still fighting their insurance companies to get equipment that they need - for example, to get the home care that they need. Do you think this has been worth it?

BARKAN: Well, I find myself thinking a lot about the kind of world my children will inherit. One of the best gifts I can leave behind is a world that is more just, more equitable and more loving. But more immediately than that, I have found great purpose and meaning in this struggle. It has brought me so many relationships and so much joy. It has been worth it, even though the victories are too rare.

MARTIN: Nicholas, I have a similar question for you. You followed Ady as he traveled across the country and traveled multiple times to Washington to protest, to testify. But we see him as the disease advances. On the one hand, you know, I think people should know what it's like to live with something so challenging. On the other hand, I have to say, it's hard to watch him struggle. Is it OK to ask you what it's been like for you?

BRUCKMAN: Of course. Yeah. Obviously, you know, becoming really close to Ady and seeing somebody you care about through a disease like ALS is really difficult and really painful. But I think - I know this sounds big, but I - you know, 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, you know, 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 is 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.

MARTIN: So, Ady, I want to let people know that this film is emotional. There are times when it's hard to watch. You know, you're filled with sadness, but it's also filled with a lot of love and laughter. There's one specific scene I'm thinking of when you're traveling across the country, and your team insists that you take a shower. I cannot say I blame them. And, of course, your kids are so adorable that, you know, you just can't get enough of them. Is there something that you would like people to know about your life that you think they will get from watching this film?

BARKAN: Haha. Those were great times. I hope people come away from the movie understanding that I found great joy and meaning in the struggle for justice, even as ALS 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.

MARTIN: That was Ady Barkan. He is the founder of the Be A Hero fund and the subject of the new film, "Not Going Quietly." We also heard from Nicholas Bruckman, the film's director. It is available on PBS. I want to say again that we recorded this conversation earlier and gave Ady his questions in advance, something we normally do not do, in order to remove the lengthy pauses that are required for us to communicate due to the device that Ady uses to speak with us. Thank you both so much for being with us.

BRUCKMAN: Thank you, Michel. It was a pleasure to be here.

BARKAN: Thank you so much.

(SOUNDBITE OF MUSIC) Transcript provided by NPR, Copyright NPR.