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“Not Going Quietly”: Paralyzed with ALS, Ady Barkan Continues Fighting for Medicare for All

StoryAugust 13, 2021
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Image Credit: "Not Going Quietly"

We speak with healthcare activist Ady Barkan, the 37-year-old lawyer and father who, since his ALS diagnosis in 2016, has devoted his life to campaigning for universal healthcare. He has continued to speak out even after losing his voice and now uses a computerized system that converts his eye movements to speech. Barkan is the subject of “Not Going Quietly,” a new documentary following his cross-country activism. “Only a truly radical departure from our exploitative, for-profit model to one that guarantees healthcare as a right for all will ensure that we no longer live in a nation where people go bankrupt on account of their medical bills,” Barkan tells Democracy Now! “We need Medicare for All now.” We also speak with the film’s director, Nicholas Bruckman, who says he immediately saw a “spark” in Barkan after meeting him in 2018.

Transcript
This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This is Democracy Now! I’m Amy Goodman.

We end today’s show with one of the most remarkable healthcare activists in the country. His name is Ady Barkan. He’s a 37-year-old lawyer and father who’s dying of terminal ALS. Since his diagnosis in 2016, Ady has dedicated his life to pushing for Medicare for All. He’s continued to speak out even after losing his voice. He now uses a computerized system that tracks his eye movements and turns them into spoken words. Ady’s story is told in the new documentary Not Going Quietly. This is the trailer.

SEN. ELIZABETH WARREN: Now, I want to have a chance to tell the story about my friend Ady Barkan.

JON FAVREAU: He’s been an activist and an organizer all of his life.

REP. JIM McGOVERN: With us today is Ady Barkan. I can’t do Ady’s story justice. I will let him tell it.

ADY BARKAN: After Carl was born, we felt like we had reached the mountaintop.

Say hi.

And then, out of the clear blue sky, we were struck by lightning.

I was diagnosed with ALS today.

The knowledge that I was dying was terrible, but dealing with my insurance company was even worse. I wanted to spend every moment I had left with Rachael and Carl, but then Congress came after our healthcare. I couldn’t stay quiet any longer.

BROOKE BALDWIN: My next guest made headlines when he confronted a Republican senator on an airplane.

ADY BARKAN: This is your moment to be an American hero.

All right, ready to rumble.

We decided to start a movement.

To urge people to stand up, confront the elected officials.

Paul Ryan, I’m going to knock on your door!

REPORTER: Did you just get out of jail? Are you going to keep protesting on Monday?

ADY BARKAN: [bleep] yeah!

PROTESTERS: What do we want? Healthcare!

ADY BARKAN: I am willing to give my last breath to save our democracy. What are you willing to give?

Liz, I’m having trouble breathing.

LIZ JAFF: I think we have to stop.

ADY BARKAN: Our time on this Earth is the most precious resource we have.

Carl, I love you so much.

Movement building allows me to transcend my body. And that’s the beauty of democracy, that together we can be more than our individual selves.

AUDIENCE: Ady! Ady! Ady!

ADY BARKAN: The paradox of my situation is, the weaker I get, the louder I become.

RACHAEL SCARBOROUGH KING: Who’s that?

CARL BARKAN: Abba!

AMY GOODMAN: The trailer to the new documentary Not Going Quietly. It premiered last night in Los Angeles and tonight at the Angelika theater here in New York.

On Thursday, just before the L.A. premiere, I had a chance to speak over Zoom with Ady Barkan, who was at his home in Santa Barbara, California.

AMY GOODMAN: Ady, I wanted to start off by saying this is one of the great honors of my life to be talking to you. So thank you so much for making this time, right before the documentary is airing about your life.

Let me start off by asking you about the enormous emphasis on healthcare in this country right now, even in the corporate media, because of the pandemic. Yet there is very little talk about Medicare for All, an issue you have dedicated your life to. Can you talk about why you have dedicated yourself to this issue?

ADY BARKAN: That is so generous, Amy. Thank you for your career of leadership.

Only a truly radical departure from our exploitative, for-profit model to one that guarantees healthcare as a right for all will ensure that we no longer live in a nation where people go bankrupt on account of their medical bills. Take this last year as a prime example of the breadth of cruelty possible in our for-profit healthcare system. COVID disproportionately devastated poor communities and communities of color. Death rates in Black, Indigenous and Latinx communities were over twice that of their white counterparts. Millions lost their jobs and, as a result, their health insurance. Hospitals that primarily serve Medicaid patients shut down, prioritizing profits over people. Meanwhile, private insurers saw their profits double, because Americans delayed much-needed care. A system that profits off of death and people forgoing medical care is a system that is beyond repair. We need Medicare for All now.

AMY GOODMAN: What gives you the strength, Ady, to be the relentless activist that you are?

ADY BARKAN: You know, building a progressive movement means having your heart broken all the time. This comes with the territory. We organize for a better world, not in spite of our own pain, but because of it. We push forward because we are faced with no other option but to struggle for our freedom.

These last five years have been really tough, both personally and also collectively as a society. But take a breath and look around. You will find evidence of the profound beauty that our society has forged from the depths of pain, especially this past year. Of course, there is a lot of work to be done. But placed in this context, it means there is also more community, more creation and more healing that is bound to emerge from our labor.

AMY GOODMAN: Ady, what gives you hope?

ADY BARKAN: I’ve learned that hope is not a lottery ticket that we cling to. It’s a hammer that we use in an emergency to break the glass, sound the alarm and spring into action. I am asked this question a lot, and so I want to be clear here. I don’t believe in latent hope. Hope, as I have come to know it, is the result of hard work. Hope is action in the face of despair. Hope is born out of our insistence that a better world is possible, and formed in our coming together in collective action to realize this better world of our imagination.

AMY GOODMAN: I’ll just say once again, Ady, what an incredible honor it is to be able to speak with you and to just say what an enormous difference you have made, not only in this country, but around the world, as the persistent, compassionate, brilliant and extremely funny activist that you are, about an issue of life and death, that you face every day. So, thank you so much.

ADY BARKAN: Thank you. I am grateful for your solidarity.

AMY GOODMAN: That’s healthcare activist Ady Barkan, speaking from his home on Thursday in Santa Barbara just before the premiere of the new documentary, Not Going Quietly. In a moment, we’ll speak with the film’s director. But first let’s turn to an excerpt of the film, where Ady testifies before Congress in April 2019.

ADY BARKAN: Chairman McGovern and members of the committee, thank you for inviting me to testify today. I am 35 years old, and I live in Santa Barbara, California, with my brilliant wife Rachael and our beautiful toddler Carl.

RACHAEL SCARBOROUGH KING: Who’s that?

CARL BARKAN: Abba!

ADY BARKAN: Every month since my diagnosis, my motor neurons have died out, my muscles have disintegrated, and I have become increasingly paralyzed. I am speaking to you through this computer, because my diaphragm and tongue are simply not up to the task.

Although my story is tragic, it is not unique. In many ways, it is not so rare. Every family is eventually confronted with serious illness or accidents. On the day we are born and on the day we die and on so many days in between, all of us need medical care.

And yet, in this country, the wealthiest in the history of human civilization, we do not have an effective or fair or rational system for delivering that care. Our time on this Earth is the most precious resource we have. A Medicare for All system will mean more time giving high-quality care. And for patients and our families, it will mean more time doing the things we love together.

And so, my closing message is not for the members of this committee; it is for the American people. Join us in the struggle. Be a hero for your family, your communities, your country. Come give your passion and your energy and your precious time to this movement. It is a battle worth winning, for my son Carl, for your children and for our children’s children. This is our Congress. This is our democracy. And this is our future for the making.

AMY GOODMAN: Ady Barkan, testifying before Congress in 2019. He’s since had a second baby, Willow. That clip featured in the new documentary, Not Going Quietly.

We’re joined now by the film’s director, Nicholas Bruckman. He’s joining us from Los Angeles, where the film premiered last night, premiering tonight at the Angelika here in New York.

Nicholas, congratulations on this magnificent work about a magnificent man and movement. Talk about why you took this on.

NICHOLAS BRUCKMAN: Yes. I met Ady in early 2018, actually to make a short film to launch the Be a Hero campaign. And within a few minutes of meeting him, I saw just a little bit of the spark of what I think we all now see in Ady. And I pitched him, that first day that I met him, on making a feature documentary. And that’s not normally the way this goes. Normally when making documentaries, you spend years or months building access and trust. And we just didn’t have that time with Ady, because when I had met him, he had already been diagnosed for a year and he only had about six months left to speak, and so we needed to get him to say everything that he would say with his natural voice really quickly.

And I think Ady really intuitively understood, having just confronted Jeff Flake, the power of his own story. A year prior to that, he had been in a lot of despair, reckoning with what had happened to him and the implications for his family. But that confrontation with Flake and how it really put him on the national spotlight and changed so many people’s lives, I think, gave him and his wife Rachael the understanding that stories have power.

And what transpired from there is we went on the road with Ady for 40 days —

AMY GOODMAN: I want to — I want to interrupt you quickly. I want to interrupt you quickly to go to a clip from Not Going Quietly, where Ady Barkan leads a protest in Washington in an effort to pressure Republican Senator Jeff Flake over his support of a Republican tax bill.

ADY BARKAN: We’re here in Washington, D.C., trying to stop this bill. Why? I have ALS, which is causing me to become paralyzed quite quickly. And as a result, I’m using a wheelchair. My voice is no longer as melodious as it used to be.

To Senator Jeff Flake, you don’t have to do this this way. I understand that you want a tax cut. I understand that you are conservative and I am not, and that’s OK. But you can get a tax cut without ripping healthcare away from tens of millions of people.

UNIDENTIFIED: This is Ady Barkan.

ADY BARKAN: Hi. How are you?

CONGRESSIONAL AIDE: How are you?

ADY BARKAN: My name is Ady.

So, can I ask — as you know, this bill is going to cut Medicare and destabilize the entire national health insurance system.

CONGRESSIONAL AIDE: Sure. He’s still in the process of reviewing it. He hasn’t made a conclusive decision one way or the other. So, we’re grateful for you guys stopping by, though.

ADY BARKAN: Well, so, let me tell him this. A, we are human beings. We have dreams and hopes and love and relationships, just like he does and just like you do. And message number two is, if he votes for this bill, he will lose his job in 10 months. So that’s his choice.

AMY GOODMAN: So, that was Ady at the offices. And, Nicholas, you’re talking about when he met him on the plane. Explain. Was that just after this?

NICHOLAS BRUCKMAN: Yes, this was just after he had met Jeff Flake. Ady had been on a — had gone to D.C. to protest the tax bill, and he had essentially struck out. His voice wasn’t heard. He didn’t feel recognized. And he had just experienced this massive loss.

And incredibly, on the airplane back, the woman next to him on the plane points out that Jeff Flake himself is sitting up front. They go and confront him, and Liz films it on camera. And that video goes viral before the plane even lands.

And that spark, that moment of serendipity, becomes the launch of the Be a Hero movement, where they go across country telling people’s stories to congresspeople and confronting them in their offices, the way you see in that clip.

AMY GOODMAN: Now, of course, we’re seeing him speaking with his own voice, and that’s not the case now, as we saw in my interview, as his eyes now trigger what he says. It’s just phenomenal, with this computer voice, the technology and the power of his expression.

NICHOLAS BRUCKMAN: Yeah. The film tracks this incredible parallel between the loss of his physical voice and physical body and his growing of this huge national platform. And Ady says ALS has given him this newfound power. It’s given him — it’s become a weapon that he’s used to fight for healthcare and to fight for his children. And that power is what the film is about.

AMY GOODMAN: And so, where do we stand now with Medicare for All and the Be a Hero campaign? Explain the concept of Be a Hero, Ady’s organization.

NICHOLAS BRUCKMAN: Yeah, so, Ady’s organization, Be a Hero, is still active today. The film charts, I think, an incredible chapter in Be a Hero, but I believe that Ady’s best work is ahead of him. Ady and Liz and the entire Be a Hero team continue to use this tactic of storytelling to power. And so they capture the stories of people who’ve been impacted by our healthcare system. They tell those stories to our representatives. They confront them. They find them in their offices, wherever they can, capture on cellphone video, and really shame them into seeing the impacts of their policy decisions. And this has built a national, people-powered movement, all started from that encounter on the plane. And it’s been incredibly impactful. We saw the impact in the film. We see the impact Ady has single-handedly with his team on the 2018 elections. He was instrumental in the 2020 elections and in organizing the progressive base. He interviewed all of the candidates and spoke to Joe Biden directly. And now we see, because of the efforts, like Ady, that is 69% of Americans support Medicare for All. Even within the Republican Party, there’s a huge support of expanding Medicare and Medicaid. And it’s largely from the efforts like Ady’s.

AMY GOODMAN: Nicholas, I want to end with another clip from your phenomenal film, Not Going Quietly, where Ady reflects on his own mortality due to ALS.

NURSE: Blow as hard as you can. Blow, blow, blow, blow, blow. Keep going. Go, go, go, go! It was 44%.

ADY BARKAN: Wow.

NURSE: Yeah.

ADY BARKAN: That’s a huge decline.

NURSE: Is it?

ADY BARKAN: Yeah, I was at 70.

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.

CARL BARKAN: What Abba doing?

RACHAEL SCARBOROUGH KING: What is Abba doing?

CARL BARKAN: Medicine.

ADY BARKAN: Hey, Carl.

RACHAEL SCARBOROUGH KING: Medicine.

ADY BARKAN: Yeah, medicine.

CARL BARKAN: Whoa!

RACHAEL SCARBOROUGH KING: Whoa.

ADY BARKAN: I’m not sure how many more months I have where I can speak well enough that I can be understood, but I plan to spend every one of those months doing everything I can. As my life is coming to the end, I want to make my son proud. Rachael knows that this may be one of the last times that I can bird-dog a senator or speak at a rally. She’s sacrificing so that we can do this. I admire her and appreciate her so much.

AMY GOODMAN: Ady Barkan, speaking in a clip from the new documentary Not Going Quietly, premiering this weekend in L.A., in New York and beyond. And we want to thank Nicholas Bruckman, the film’s director.

That does it for today’s show. Democracy Now! is currently accepting applications for our video production fellowship and our digital fellowship here in New York City studios. The deadline is this weekend. You can learn more and apply today at democracynow.org. I’m Amy Goodman. Stay safe. Wear a mask.

The original content of this program is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License. Please attribute legal copies of this work to democracynow.org. Some of the work(s) that this program incorporates, however, may be separately licensed. For further information or additional permissions, contact us.

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