Ady Barkan spoke with just about all of them: Elizabeth. Cory. Bernie. Kamala. Julián. Pete.
The only Democratic presidential candidate Barkan hadn’t spoken with? Joe.
But after Biden edged out the rest of his party’s competition, that changed. Eventually, everyone wants to talk with Barkan.
“When he won the nomination, my team reached out one more time. And despite our differences on a lot of policy issues, he agreed to meet with me,” said Barkan, an iconic activist pushing universal health coverage through Medicare for All.
“He and I have meaningfully different perspectives on the world, not only on what ails it, but on what we must do to address those maladies,” said Barkan. Nonetheless, the activist endorsed Biden for President. “ I know that the Vice President heard what I was saying. He listened. He understood and he promised to continue doing both after he is elected.”
Barkan has increasingly had the ear of the most influential Democratic politicians in America since a viral moment in 2017, when his Be a Hero co-founder Liz Jaff filmed Barkan confronting Senator Jeff Flake (R-Ariz.) on an airplane. Barkan pleaded with Flake not to support a GOP tax bill, which gutted part of the Affordable Care Act (in the end, Flake voted yes).
“You can be an American hero,” said Barkan to Flake. “Think about the legacy you will have, for my son, and your grandchildren, if you take your principals and turn them into votes. You can save my life.”
A year earlier, just before Trump’s election in 2016, Barkan was diagnosed with terminal ALS, or Lou Gerig’s disease. He is paralyzed, and since his airplane conversation, he has lost more physical control of his body. This interview — part of Rolling Stone’s “Next Wave” series on leaders who’ll shape the future — was conducted over Zoom, with Barkan using eye gaze technology to communicate.
What is the most common misconception people have about ALS?
ALS is a mysterious illness that paralyzes the body muscle by muscle and limb by limb. I went from being a healthy 32-year-old man to not being able to walk in one year and no longer being able to use my vocal chords in two years. Although I am paralyzed, I can still feel all the sensations. Hot, cold, itchy, when something feels good or hurts. My mind still whirls with all of my hopes and dreams for my kids and my country. But I can’t do 95 percent of what I want to do everyday. And that is really frustrating. Every day I ache to chase my son around the room and tickle him or wrap my arms around my daughter and just snuggle her. The hardest part by far has been not being able to speak for myself. Having to type things out one letter at a time means there are hundreds of things I want to say every day that I just can’t get out there. Phone calls I want to jump in and say things on and things I want to say to the people closest to me, especially [ed. his children] Carl and Willow, that just take too long to articulate. It’s truly horrendous. And yet I am so grateful for the technology that does allow me to communicate. It is a life-saver. As a country, we invest very little in research for the cure for ALS. I hope that will change in coming years.
How has your diagnosis changed your goals?
Well, my political goals have not changed. I still want to help build a more just society where everyone gets the healthcare they need, where everyone has economic security and can raise their families with dignity. I’ve always worked towards that vision, and ALS didn’t change that. What it changed, unfortunately, are my personal goals. I used to want to run half marathons, and learn to cook great Chinese food, and someday to teach my son how to box out for a defensive rebound. But now, my personal goals are to try to avoid lung infections, to sleep more than an hour in a row at night, to convince Carl to have a conversation with me, even though I take a minute to type out each sentence. Life goals, you know?
What is the biggest obstacle in your mind to achieving Medicare for All?
The political will to make it so. Let’s be honest. If we were creating a health care system from scratch, we would not create a confusing, piecemeal, for-profit approach to healthcare. We keep nibbling at the edges of what is possible. We already have a Medicare system that is delivering healthcare to 60 million Americans. Why not expanded to include everyone? No more confusion. No more fighting with insurance companies, no more medical bankruptcies. What we would get is predictable health care coverage for all. Through my work with Be a Hero PAC and the Center for Popular Democracy, we will continue to fight to elect people who support Medicare for All and push for policies that get us closer to everyone in this country having healthcare.
Which year in American history do you think was the best one for the greatest number of people?
That is another good question. The 13th Amendment abolished slavery in 1865. Black men got the vote in 1870. Women in 1920. Those are top contenders, for sure.
When you think about the 2020 election, what’s keeping you up at night?
Well, having ALS means my sleep is pretty horrible most nights. But ALS aside, there are two scenarios that keep me up at night. The first is that the election will be close in a few key states, and even though Biden is the likely winner, Trump will cause enough doubt that there will not be a peaceful transfer of power to Joe Biden. The second scenario is that Joe Biden gets elected president in a landslide, the Democrats take the Senate and pick up even more seats in the House. But rather than taking these huge election victories as a mandate for a progressive change, nothing gets done because the Republican minority in the Senate uses racist rules like the filibuster to block any bills from becoming law. And Democrats acquiesce, and we fail to actually use the power voters give us.
Do you think life will be better or worse in 2040? And if it’s better, what did we do to make it that way?
I hate to think it will be worse. Tens of millions of Americans have lost their jobs and their healthcare. The pandemic is raging on with no end in sight. There are climate-related fires burning out of control here in the West. McConnell is trying to ram through a Supreme Court nomination that could undo the ACA, marriage equality, legal abortion, and much more [Editor’s note: this interview was conducted before Amy Coney Barrett’s confirmation to the Supreme Court]. Trump’s incompetence and arrogance have harmed so many. Four more years of him could show us just how bad it could really get. I’d like to think that the election can be the beginning of the next chapter. But even if Joe Biden is elected, we cannot sit back and hope that he will solve our problems. We will need to continue to fight. First, to change the rules in the Senate and then to get more and more people actively engaged in campaigns to address income inequality. Climate change and healthcare. I know everyone is tired. Trust me, I get it. But in some ways, the most important work will begin after the election. My team at Be a Hero is working out right now on how we endeavor to make Medicare for All a reality someday soon. We have so much work to do and we cannot let up.
If you got a political genie that allows you to enact one law, what would it be?
That is a great question. But it is kind of like asking an editor at Rolling Stone what is her favorite song of all time. Do you pass the Green New Deal to save the planet? Do you abolish the Electoral College and add 10 new states? Do you expand the Supreme Court? Or how about Medicare for All? Probably, if you really made me pick my favorite ever, it would be “A Day in the Life,” by the Beatles. No, wait. “Sinnerman” by Nina Simone. Actually, fuck it. Let’s be honest, it’s Beethoven’s “Ninth.”
If you’ve got to pick your own personal theme song, what would it be?
I guess if you really insist, I’ll go with the Green New Deal.
Who first inspired you to get involved in politics?
My dad was the one who taught me how much politics matter. My dad is a professor of history. We always had the news on television in the evenings. One of my earliest memories is from the fall of 1988 when we drove by a building somewhere in Boston. And he told me, look, those are the offices of the man we want to be president. Michael Dukakis didn’t win, but I am still involved in politics.
What has been your proudest moment?
It was definitely the spring evening, sophomore year of high school, when I made it all the way around the track in only fifty three seconds. Now, that was a real accomplishment.
What’s been your biggest disappointment?
Finally, it’s taken eight tries, but you have finally asked a bad question. Being suddenly diagnosed with a deadly illness at age 32, obviously.
What advice do you have for people who are feeling frustrated by the political process, who might be inclined to give up or tune out?
Hope is not a state of mind. Hope is a state of action. I’m going to continue using my time to fight for a better healthcare system and a more just society. I firmly believe that however bleak things look, the cure to what ails American democracy is more American democracy. So I’ll continue encouraging people to get involved, to organize, vote, march if you still can. That’s the only way things get better.
What advice do you have for people who want to make meaningful change?
Well, the pandemic necessitates a different kind of activism. And the first step is to win this election. But the good news is that there are many get out the vote programs running right now that are accessible from your couch. You can sign up to phone bank, text, or write postcards to voters right from your own living room. My organization, Be a Hero, is putting two million dollars behind the most powerful ads we can. The ads feature folks like myself and nurses across the country talking about healthcare, because that’s what matters. We are doing everything we can to reach voters. I hope that all this activism leads to a new president, a Democratic majority in both the House and Senate, and that next year we can continue to work toward healthcare for all. We need to hit the ground running in 2021 and pass a real Covid relief bill. We need to double the budget of the National Institute for Health. We need to expand the public option so that more people have access to health insurance. And we need to prioritize and pay for long term care so that people like me don’t have to go bankrupt to stay in our homes with our families, and so that the workers in these jobs can make a living.
What gives you hope?
The uprising of resistance right after the 2016 election gave me hope that we could carry each other through these four years. We fought like hell to preserve any semblance of democracy and do our best to protect our fellow Americans from the devastation that he is so intent to impart. And the protests and massive uprisings in the movement for black lives have forced more of us to confront our white supremacist culture. The movement for change and justice is alive and well. We can never give up.
What do you see as your role going forward if Biden wins? If Trump wins?
Under a Biden presidency, our progressive movement will be able to harness our new energy and power in pursuit of justice and equity, rather than constantly trying to defend ourselves from the latest atrocity. And I don’t really even want to think about what happens if Trump wins. But if he does, we will need to hold the line to keep him from doing even more harm to our communities. But either way, I won’t give up the fight for our democracy or give up on the idea that healthcare is a human right. And my organization, Be a Hero, will continue to do what we do best: move people to action to make change and inspire people to give. When you’re a grassroots people-powered PAC, our work for social justice doesn’t begin and end with who the president is. It is our lifelong duty to work for justice.
You’ve said you used to meditate, but activism is your practice now. How do they serve a similar purpose for you?
In the months and the years since my diagnosis, I struggle every day to direct my mind to productive places. But I have seen the personal benefits of success. I am happier and more at peace when I succeed. I found a great deal of mental relief from taking action. I would encourage others to get out and march if you can, vote and organize. You can help heal our nation. And also, I think, heal your soul.