It isn’t easy for Ady Barkan to raise his right fist anymore, but he’s been doing it a lot lately.
Diagnosed with amyotrophic lateral sclerosis, an incurable neurodegenerative disease better known as ALS or Lou Gehrig’s disease, 34-year-old Barkan is a progressive activist who has spent the past two years fighting the GOP’s 2017 tax bill and trying to help Democrats take back Congress.
From his wheelchair in Minneapolis last month, Barkan addressed a crowd of hundreds.
“I am willing to give my last breath to save our democracy,” he said. “And I’m here to ask you: What are you willing to give?”
Getting his message out
According to Barkan, his voice is getting weaker every month, but that hasn’t stopped him from being a vocal supporter for Democratic candidates in swing districts across the country.
He recently released an advertisement endorsing Danny O’Connor, a Democrat running for Congress in Ohio’s 12th District, called “This dying father has a message for Ohio voters” – and Barkan’s PAC purchased $100,000 worth of airtime to broadcast it.
“I was shocked when the Republicans in Congress proposed a tax bill that would take away my health care to fund tax cuts for billionaires,” he says in the ad. “Your family and my family are going to pay the price, so now I’m asking you to be a hero.”
Barkan told CNN he created the ad because Ohio’s upcoming special election will be seen as a sign of what to expect in November’s midterm election.
It’s also another election, and with 23 seats needed for Democrats to take back the House, every race matters, he said.
This is only the latest effort from Barkan’s Be a Hero Fund, a project of the Center for Popular Democracy that focuses on electing Democratic candidates who will protect health care programs like Medicare, Medicaid and the Affordable Care Act.
The fund created a similar ad campaign in April to influence a special election in Arizona, and Barkan said his team hopes to run advertisements in other districts before the midterm election.
“I just want people to know that their future is in their hands and our democracy is what we make of it,” he said.
Mobilizing Democrats across the country
Last month, Barkan embarked on a six-week speaking tour from coast to coast to campaign for Democratic congressional candidates. As part of the 22-state “Be a Hero” tour, Barkan has joined forces with activists and politicians like Sens. Kamala Harris, D-California, and Elizabeth Warren, D-Massachusetts, to mobilize voters and raise awareness about health care.
“Our elected officials in D.C. are refusing to be heroes on our behalf, and I am asking Americans all across the country to be heroes by organizing their neighborhoods and co-workers and friends and family, and making sure that everyone votes in the election to preserve our health care and protect our democracy,” he said.
Barkan made headlines last year when a video of him confronting Sen. Jeff Flake, R-Arizona, at 30,000 feet on a cross-country flight surfaced on social media. In the video, Barkan asked Flake to vote against the GOP’s proposed tax-cut bill, which Barkan said would have a devastating effect on his disability payments and medical costs.
“You can be an American hero, you really can,” Barkan said on the plane. “You can save my life.”
His career as a political activist didn’t end there. Barkan was arrested on Capitol Hill less than a week later while protesting the same bill.
The tax plan passed, but Republican leaders did agree to prevent a $25 billion cut to Medicare, a cut Barkan had aggressively protested.
Fighting for a future he won’t see
In an Op-Ed he wrote for CNN last year, Barkan said he never imagined he would be in this position.
“A year ago, I was healthy, taking morning runs on the California coast and looking forward to a new life with my newborn son, Carl,” he wrote.
Barkan was diagnosed with ALS in October 2016, when his son was 4 months old.
“My wife and I, it felt like we had the perfect life until that moment, and it’s obviously been very difficult and very sad that I won’t have as much time with my son as I would like,” Barkan said.
Now, he says he is using what years he has left to fight for democracy and to make the world a better place for his son.
The road ahead
Barkan has a busy few weeks ahead as he finishes his speaking tour August 12.
After stops in New Jersey, Pennsylvania, D.C. and Delaware last week, his next events are in New York, where he will speak alongside gubernatorial candidate Cynthia Nixon and with Democratic congressional candidate Alexandria Ocasio-Cortez.
Although it’s becoming more difficult as his illness progresses, Barkan said he will continue giving speeches until he is no longer able.
To his followers on Twitter, he has made one thing clear: “I may be dying, but I’m definitely not going quietly.”