Three years ago, Ady Barkan, then 32, had a flourishing career as a progressive activist; a wife, Rachael, who’d just landed a dream job as a professor; and a chubby baby boy named Carl. The two had just bought a beautiful house and were picturing the decades they would spend there together. They were, Ady writes in his new memoir, Eyes to the Wind, “the happiest and luckiest people we knew.” Then in the fall of 2016, after Ady felt some weakness in his left hand, a neurologist gave him a death sentence: a diagnosis of amyotrophic lateral sclerosis, or ALS.

Since then, Ady Barkan has become arguably the most influential activist in America. Many people first heard about him when he happened to be on the same plane as Senator Jeff Flake (R-AZ) in December 2017. In what became a viral video, Barkan challenged Flake to oppose Donald Trump’s tax plan and prevent cuts to Medicare and Medicaid. Barkan has now been arrested at the Capitol in Washington more than half a dozen times, showing by example how to fight injustice. He writes, “Precisely because my days were numbered, people drew inspiration from my decision to spend them in the resistance. Precisely because I faced such obstacles, my comrades were moved by my message that struggle is never futile.” Barkan has already inspired a generation of activists, and with his new book, he is set to inspire generations to come.

—Christopher Shay

CS: Given the progression of your ALS, how are you answering these questions?

AB: I’m using a Tobii EyeMobile Plus, which tracks the location of my pupil, allowing me to type on a Microsoft tablet that is attached to my wheelchair.

CS: The title of your memoir, Eyes to the Wind, is the name of a song from the band War on Drugs, and your heartrending first chapter ends with you listening to one of the band’s albums. Why did you choose this song as the title of your book?

AB: It is a gorgeous song that I first heard right around the time of my diagnosis and because to me the phrase connotes bravery and perseverance in the face of adversity.

CS: You write a lot about the people caring for you—your wife, family, friends, professional caregivers. What have you learned about the care industry in the United States?

AB: It’s filled with incredible human beings doing deeply human work. And it’s gendered and racist and classist. Capitalism is a bad way to run it.

CS: You engaged in civil disobedience for the first time in 2017 and have since been arrested multiple times. What role do you see for disruptive protest techniques? When is civil disobedience most effective?

AB: Disruptive protest is about demanding that the status quo not continue unchallenged. It seeks to clarify the moral stakes of a political struggle and center the experience of individuals rather than the policy arguments of professionals.

CS: You learned the word “kismet,” or destiny, on the plane right before your viral confrontation with Senator Jeff Flake over Trump’s tax bill. How did kismet figure in that video, and how should kismet interact with the hard work of organizing?

AB: It’s about being in the right place at the right time—and being prepared for it.

CS: You write that if you had 10 more years, you would help try to rebuild the labor movement. Why do you see this as the most important fight for the progressive movement, going forward?

AB: I think we need to politicize a lot more people and get them to take radical, disruptive action in their own self-interest. Labor organizing is the best way we’ve done that, historically.

CS: You say in your book that you wanted to leave some strategies behind. What do you see as the most important lessons of Eyes to the Wind?

AB: Probably something like dream big, fight hard.

CS: You write that you were in search of a legacy. What do you want that legacy to be? How can we fight with you now and then onward after you’re gone?

AB: I want to be remembered for having done my part to improve people’s lives and bring them into political struggle. As long as you’re in the fight, you’re doing right, in my book.