Before his diagnosis, Mr. Barkan already was a rising star in the world of liberal activism. In the summer of 2014, he took eight workers and community activists to Jackson Hole, Wyo., to confront Federal Reserve policymakers at the central bank’s annual summer retreat. He believed that unions, churches and other liberal advocacy groups, which had long focused on microeconomic issues like minimum wage laws and mortgage aid programs, needed to pay more attention to the Fed’s role in shaping economic conditions. The first time I saw Mr. Barkan, he was standing in the lobby of the conference hotel, waiting to accost the Fed chairwoman, Janet Yellen, while wearing a green T-shirt that said “What Recovery?”
The foundation that paid for the trip, and for the “Fed Up” campaign that Mr. Barkan mounted in its aftermath, wrote in an internal assessment that it didn’t see much chance Mr. Barkan would succeed in influencing monetary policy. But that November, Ms. Yellen met with 30 workers led by Mr. Barkan in the Fed’s ornate boardroom in Washington. Two years later, in August 2016, the Fed’s summer retreat opened with a new event: Eight of the Fed’s top officials attending a meeting with “Fed Up” participants, listening to their stories.
Just a few weeks later, Mr. Barkan was spending a Sunday morning with a friend he had known since kindergarten, who happened to be a neurologist. He mentioned that his left hand felt weak, and she offered to take a look. By the end of the week, he had been told he was dying. He had just become a father; the doctors said he would be lucky to see his son turn 4.
For almost a year, Mr. Barkan allowed the imminence of death to dominate his life. But by the fall of 2017, he felt useless and restless. He wanted to spend time with those he loved, but he did not love the way he was spending time: He had lost a sense of purpose. He wanted to be a good father, but he was losing the ability to hold his son.
As congressional Republicans moved to pass a large tax cut, Mr. Barkan decided to cast himself in the role he had so often persuaded other people to play — as a living symbol of the stakes. He flew to Washington to protest the bill, arguing that tax cuts would be a prelude to spending cuts — including reduced spending on federal health insurance programs. Headed back to California, he found himself on the same flight as Senator Jeff Flake, Republican of Arizona, and he urged the senator to “Be a Hero” by opposing the cuts. A video of their conversation went viral.
Mr. Barkan capitalized adeptly on that celebrity. Seeking to punish Senator Susan Collins of Maine for supporting the legislation, he hit on the idea of funding her “future opponent” in 2020, whoever that may be. So far, he has raised almost $3.8 million. During the midterm elections in 2018, he went on a nationwide tour, speaking before thousands even as he was losing the ability to speak.
“I’m willing to give my last breath to save our democracy,” he told the crowds. “What are you willing to give?” He also raised money and starred in television ads telling the story of his illness and attacking Republicans who had voted for the tax cuts.
He has traveled repeatedly to Washington for protests even as he has lost the ability to move his arms and legs. In September 2018, he was arrested at a protest against the Supreme Court nomination of Brett Kavanaugh. The police let him roll into custody.
His activism has allowed him to find some meaning in his illness. “The work of democracy is about trying to do together what we cannot do individually,” he told me. “And so for me the best way to escape my disintegrating body is to engage in this collective struggle.”
“I’m not going to have a 30-year career. I have to jam it all into a couple years right now.”
The power of this performance derives precisely from the fact that it is a limited run. Each visit to Washington is more difficult than the last. Mr. Barkan’s most recent trip marked the first time he has formally testified before Congress — but it came after he has lost the ability to speak. He now communicates by using his eyes to pick out letters on a screen, instructing a computerized voice to express the thoughts of Ady Barkan. He has also written a book about his life and beliefs, which will be published in September — one more chance to tell his story.
On Tuesday, the computer delivered Mr. Barkan’s opening statementto a House committee. The voice doesn’t sound like his. It lacks the undercurrent of laughter, even in the face of adversity. But it carried his message: He said he has been lucky, blessed with the resourcesnecessary to provide for his own care. But others, he said, are less lucky. They, too, are dying and they need the rest of us — which is to say, the government — to help.
Mr. Barkan sat quietly as the voice spoke, wearing a black T-shirt that read “Be a Hero” — an extraordinary person no longer able to do the most ordinary things, seeking through his words and his example to convince ordinary people to do something extraordinary.
“I sit before you today a hopeful man,” he said. “There is a better way to structure our society, a better way to care for one another, a better way to use our precious time together.”