'Hero' healthcare activist Ady Barkan dies at 39 of ALS

Healthcare activist Ady Barkan has died at the age of 39 of the neurodegenerative disease ALS. After his diagnosis in 2016, Barkan dedicated his life to the fight for single-payer healthcare. He continued to speak out even after ALS left him physically unable to talk, communicating with a computerized system that translated his eye movements into spoken words. In 2019, he used the device to deliver powerful opening remarks at the first-ever congressional hearing on Medicare for All. His story is told in the documentary Not Going Quietly. In 2021, Democracy Now! spoke with Ady Barkan just ahead of the film’s premiere.

Transcript

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

AMY GOODMAN: Healthcare activist Ady Barkan has died at the age of 39 of the neurodegenerative disease ALS. After his diagnosis in 2016, Ady Barkan dedicated his life to the fight for single-payer healthcare. He continued to speak out even after ALS left him physically unable to talk, communicating with a computerized system that translated his eye movements into spoken words. In 2019, Ady used the device to deliver powerful opening remarks at the first-ever congressional hearing on Medicare for All.

His story is told in the documentary Not Going Quietly. In 2021, I spoke with Ady Barkan just ahead of the film’s premiere.

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 was healthcare activist Ady Barkan in 2021. He died at the age of 39 of the neurodegenerative disease ALS. I’m Amy Goodman. Thanks for joining us.