Ady Barkan, a well-known activist who campaigned for Medicare for All while battling ALS, a neurodegenerative disease, died Wednesday in Santa Barbara, California. He was 39 years old.
His death, at Santa Barbara Cottage Hospital, took place announced by Be a Herothe political organization he co-founded in 2018.
Mr. Barkan was diagnosed with ALS, or amyotrophic lateral sclerosis, in 2016, four months after the birth of his son, Carl. The disease, which causes paralysis, strikes many patients in the prime of life and often results in death within two to five years.
As Mr. Barkan faced his mortality, he dedicated the rest of his life to changing the American health care system.
His profile and influence grew even as his health deteriorated, in part because he had the gift of mixing his personal story with calls to action. He has testified before Congress, interviewed Democratic presidential candidates, and spoken at the Democratic National Convention.
“That’s the paradox of my situation,” he says. told the New York Times in 2019. “As my voice got weaker, more people heard my message. As I lost the ability to walk, more and more people followed in my footsteps.
Ohad Barkan was born on December 18, 1983 in Boston. His mother, Diana Kormos Buchwald, is a professor of history of science at the California Institute of Technology in Pasadena. His father, Elazar Barkan, is a professor of international and public affairs at Columbia University. Both emigrated to the United States from Israel.
Mr. Barkan grew up in Cambridge, Massachusetts, where his parents were graduate students, and then in California, where he attended Claremont High School. One of his first forays into politics was volunteering on a campaign trail for Representative Adam Schiff, Democrat of California.
He met his wife, Rachael King, who is now a professor of English literature at the University of California, Santa Barbara, at the student newspaper at Columbia University when they were students there.
Initially wanting to become a lawyer, Mr. Barkan clerked for a federal judge in New York after law school. But he decided to become a full-time activist after being drawn to the Occupy Wall Street protests that began in Lower Manhattan in 2011.
Before his ALS diagnosis, Mr. Barkan was an energetic but relatively anonymous foot soldier who championed progressive causes, including immigrant and worker rights, ending mass incarceration and reforming the Federal Reserve. After falling ill, he became a left-wing hero and social media star. Policy I called him “America’s most powerful activist.”
He knew how to attract public attention to his progressive causes. On a plane in 2017, he confronted Senator Jeff FlakeRepublican from Arizona, over a Republican tax bill that he said could result in deep cuts to social services, such as health care.
“Think of the legacy you will leave for my son and your grandchildren if you take your principles and turn them into votes,” Mr. Barkan said. “You can save my life.”
In 2018, he was arrested in his wheelchair in a Senate office building while protesting the nomination of Brett M. Kavanaugh to the Supreme Court.
Be a Hero, which was officially founded that year, eventually grew to include two nonprofit organizations and a political action committee. Among other issues, the group campaigned to protect nurses during the pandemic and to replace Senate Republicans, who it said were the chamber’s “most dangerous voices” in the 2022 midterm elections.
Senator Elizabeth Warren, Democrat of Massachusetts, said in September that she had seen Mr. Barkan “fight some very good fights” over the years and that he had been instrumental in stopping Republican efforts to repeal the Affordable Care Act, President Barack said. Obama’s signature domestic achievement.
“Through his perseverance, he not only fought in combat,” Ms. Warren said, speaking virtually to an audience at the Franklin D. Roosevelt Presidential Library and Museum in Hyde Park, N.H. York, where Mr. Barkan accepted an award. Roosevelt Institute award for activism. “He fought those fights and helped win them.”
As the 2020 presidential election approaches, Mr. Barkan has made clear that while he supported the Democratic candidate, Joseph R. Biden Jr. did not agree with the candidate on health policy. (President Biden opposes Medicare for All, and Mr. Barkan had initially supported Ms. Warren, and then Senator Bernie Sanders of Vermont, for the party’s nomination.)
In a 2020 discussion with Mr. Barkan about Zoom, Mr. Biden did not commit to doubling the National Institutes of Health’s budget, saying he would “significantly increase the budget” and ensure that “We were spending an additional $50 billion on biomedical research.” » over the next few years.
“I think that’s not enough,” said Mr. Barkan, who could then only speak through a computerized voice using gaze technology.
“Well, maybe when I’m elected you can come and help me figure out what’s enough,” Mr. Biden told him.
“Thank you, Mr. Vice President,” Mr. Barkan replied. “I’m going to talk to you about it.”
Mr. Barkan is survived by his parents; his wife; their children, Carl, 7, and Willow, 3; a brother, Muki Barkan; and several uncles and aunts.
In a video celebrating Mr. Barkan’s 39th birthday, Carl summed up his father’s work with remarkable economy: “He makes sure people don’t pay too much to the doctor.” »
Mr. Barkan remained relentlessly optimistic and energetic even though he was paralyzed from the head down and losing control of his breathing. In 2018, he traveled to 22 states in 40 days. Three years later, he stated in an opinion article in the New York Times that home and community care deserved more federal funding.
“Even though I am not the father I hoped to be, I am grateful for every moment I have with my children,” he wrote. “And all of this is possible because I have 24-hour home care.”
In a speech at the Roosevelt Library in September, his last in-person event, Mr. Barkan opened by thanking his three caregivers and saying that he and Ms. King would soon celebrate their 18th wedding anniversary.
“Every year has been an adventure, and coming to New York this week, especially with our two perfect angels, Carl and Willow, is wonderful proof that new adventures still await us,” he told the audience from his Wheelchair. “And that staying in the fight can bring great rewards. »
Johnny Diaz reports contributed.