Disability activist and DSA member Ady Barkan went viral in 2017 when he confronted Republican senator Jeff Flake on an airplane about an upcoming tax bill and the damage it was about to do to Medicare and Medicaid. “You could be a hero!” he said, his speech slurred by his amyotrophic lateral sclerosis (ALS).
That YouTube moment begins a new documentary, Not Going Quietly (on PBS this fall). It follows Barkan through some difficult medical decisions, including a lung surgery that robbed him of the ability to speak except electronically, via a computer that tracks his eye movements. It shows how Barkan’s Be A Hero campaign has mobilized millions, first to vote in 2018/2020 and to demand justice afterward.
Barkan responded to questions from Democratic Left and from DSA’s Disability Working Group.
You’ve been an activist forever. When did the transition to IDing as a socialist start? And how/when did you find DSA? (Feel free to shout names!)
Like many others, my political development has had a long arc. My parents are historians, and were mainstream liberals when I was growing up. My high school American History teacher, Mike Callahan, first introduced me to the notion of left-wing politics and planted the seeds for my belief in Democratic Socialism. Then, towards the end of my time at Columbia University, I began following my friend Simeon to meetings of a radical student group that was working to ensure fair working conditions and a living wage for the people who made the university-branded apparel. From there, both at law school and after, I became more deeply involved in the fight for racial, economic, and social justice.
Over time, a mix of education, activism, and historical circumstance (Occupy!) solidified my conviction that everyone should have good healthcare, affordable housing, a clean sustainable environment, a good job with a decent wage, and free education from birth through college. I came to believe the way to guarantee these rights and dignity for all people is by joining together and demanding ordinary people hold the power in our democracy. That’s basically democratic socialism.
So, the evolution of my beliefs led me to ID as a Democratic Socialist, but I didn’t officially join DSA until the summer of 2018, when I spoke at Alexandria Ocasio-Cortez’s first community town hall following her triumph in the primary. How’s that for a shout out. The Congresswoman has brilliantly used DSA as an organizing tool to further progressive politics. I’m in awe of her contribution to the movement for Democratic Socialism.
What did you really want to say to Speaker Pelosi when she tried to pass off that Rube Goldberg device known as the Affordable Care Act as superior to Medicare For All?
You know, I wasn’t trying to be polite or hold back from speaking what I really thought in that interview with Speaker Pelosi. The truth is I had limited time with her, and I have ALS, which makes it incredibly difficult to get my arguments out quickly, no matter how fast my mind races. So I think a better question is what would I have said to Speaker Pelosi if I had more time with her? And to that I’d say that I think Medicare for All is the right policy to address the magnitude of what’s wrong with the health care system in this country. Only a truly ambitious, radical departure from the status quo that replaces the exploitative for-profit model with one that guarantees health care as a right for all will ensure that we no longer live in a nation where people can go bankrupt on account of their medical bills.I think that’s the policy that’s most likely to pass into law, as Medicare for All has a real movement and base of support behind it, which isn’t as true for nibbling at the edges of what’s possible within the confines of the ACA.
Treasury Secretary Janet Yellen, former chair of the Federal Reserve, talks about full employment as a goal of the FED now. Does this feel like an organizing success for you, given your organizing of Fed Up? What should we be looking for/afraid of/hopeful for now from the Fed, and how important is it given other priorities?
Yes! As a result of the Fed Up campaign, the Federal Reserve incorporated concern for race, inequality, and full employment in its decision-making, and made the institution more accountable to the public and not to Wall Street. It’s the most important success of my career.
I think moving forward progressives need to continue to keep the Fed accountable and not ignore the powerful institution like they did for the forty years before Fed Up. I hope the Fed continues to focus on issues of race and inequality and full employment. I hope we also see the Fed investing more directly in the economy and not just throwing money at big banks.
Are there aspects of your activism and politics that you wish you had already been tapped into before the onset of your personal circumstance?
I don’t have a ton of regrets about my work, if that’s what you’re asking. I feel like I’ve done the most good I’ve been able with the time I’ve had. I just wish I had more of it. I Do wish I had trained and worked as a union organizer. It’s hard to picture the left winning sustained power if we don’t have organized workers at the vanguard of our struggle. I know many of you reading this are working on building up the labor movement, so please keep it up.
Ableism and capitalism: thoughts? e.g. How do you think capitalism uses ableism to inform and perpetuate the status quo? What role has capitalism played in complicating your life?
Both of these questions touch on capitalism, and my relationship to it, so I’m going to answer them together. To be honest, global capitalism has largely redounded to my benefit, as it has for other privileged white men like myself. And, in a strange way, I have benefited doubly from the injustices of the world because I have also built a successful career and a proud self-identity upon confronting them. The issue, though, is not that I have benefited, but that so many others — Black, Indigenous, people of color, women, immigrants, have been left behind and discarded by our capitalist system.
And then there’s the fact that I’ve become disabled, nearly paralyzed, by A L S, which has certainly changed my relationship to capitalism. Take our moral abomination of a health care system that I’ve become a lot more familiar with since my diagnosis. The entire business model of the industry is built around denying people care for the profit of private corporations. For a long time my insurance company refused to cover the equipment and home care I need to live. This is how capitalism has complicated my life as a disabled person and how our system preys on disability for the profit of a few.
How would you like DSA to be more disability-inclusive, both nationally and at the chapter level?
To start, every meeting should have a virtual option to join, with translators or real-time captioning available. In advance of meetings, both online and in-person, organizers should provide a form to intake requests on accommodations. On that note, I appreciate the great work you are doing with the DSA’s Disability Working Group, and agree with you all that disabled socialists should be included throughout all levels of leadership, both nationally and locally. Because to be truly intersectional, our movements for progress must center disabled people.
The landscape of health care justice has expanded and diversified in large part due to the hard work of DSA organizers and members. Just look at how far we have come today with the movement for Medicare for All. And so, with the influence and power the DSA possesses, I would like to see the DSA organize around home and community based services.
Disability justice is health care justice. The past year alone, over 132,000 people with disabilities died in nursing homes. Unless we secure the initial 400 billion dollars in funding for home and community based services as proposed in the Better Care Better Jobs Act, disabled and elderly people will continue to be forced into dangerous and deadly nursing homes.
These investments in care infrastructure are urgently needed for both patients and care workers. Part of the funding for home and community based services would go to bolster the home care workforce and improve the unacceptable pay and working conditions that most care workers currently face. Women make up the majority of our caregiving workforce, and among them, the vast majority are Black, Latin X, and Asian women. Funding home and community based services then, is not only a matter of disability justice, but also of racial and economic justice.
As we take immediate steps to ensure that the spaces we occupy are created with disabled people in mind, it’s important that we also organize to secure programs and policies that would allow disabled people to lead the independent lives we all deserve.
You’re a brilliant organizer. What does that look like after the pandemic? As we all contemplate ” hybrid” (online+offline) organizing strategies after the pandemic, what are your thoughts about post-pandemic strategies (remote meetings, increased use of encrypted texting) without leaving behind those without resources?
The adjustments we made to our work and personal lives during the pandemic showed us that we can build a more inclusive and accessible society. As we collectively moved our lives online, we opened up the opportunity for disabled people, our elderly, parents with young children, and others to participate in previously inaccessible, in-person spaces.
Of course, we should continue to integrate digital solutions into our work and social lives to remain accessible. And, we must do more. Especially as it pertains to our organizing strategies, it’s imperative that we imagine how to secure other forms of access. The voices we most need to hear from are often the ones we hear least. If we provided childcare at our community organizing meetings, who could now show up? If we offered a hot meal, who would then come and stay? If we offered translators, what conversations might we be able to have? As we contemplate our return to “normal,” we must insist that our pre-pandemic state of normalcy was never good enough for our most vulnerable communities, and then together, work to bring the better world of our imagination into reality.
Beyond healthcare and M4A, what other aspects of society have influenced your socialist views?
Most people primarily know me through my activism for Medicare for All and healthcare justice, but I was an activist well before I was diagnosed with A L S. I spent my 20’s in the struggle for economic and racial justice, fighting against powerful special interests as a young lawyer in New York City. There, I helped a federal judge end the racist policing program of Stop and Frisk. I co-authored the New York City paid sick days law. I led a national campaign to reform the Federal Reserve so that our economic policies would actually reflect and support the lives of everyday Americans.
As I developed my socialist views, I poured myself deeper into organizing because I could not bear to live in a reality that accepted the alternative: a crumbling democracy, an epidemic of racism, a broken healthcare system. In doing this work, I learned that injustice is interconnected, but that freedom is too. And that it is through collective struggle that we might find personal liberation.
Watching Not Going Quietly, I noticed you doing breathing exercises before speaking, likely because I have to do that given my own MS-related speech issues. Do you still do them now that you speak via eye movements? Do they make a useful metaphor for how we can keep fighting?
Ever since I had a tracheostomy, I require a ventilator to breathe, and so I’m not able to do the same breathing exercises as I once used to. But I do believe that the breathing exercises make for a good metaphor for how to approach the difficult mental and emotional labor that comes with organizing.
As activists and organizers, it’s inevitable that we view the world through the lens of urgency. The tension is certainly present in the language of our movement. Every day it’s a race against time we do not have, and every day, people suffer as we work feverishly to change the unjust conditions that harm them. Often, it all feels too much to bear.
To do this work, it’s necessary to take in, to breathe in all that comes with the territory: the people, the frustrations, the heartbreak. That way, we can honor the grief that led us here. What we breathe out can then be the transformation of that grief, beginning with the question of how we move forward with what we carry.