Health care activist Ady Barkan on his ALS battle: ‘Hope is not a state of mind. It’s a state of action.’
By LA Stories Staff Santa Barbara
PUBLISHED 5:00 AM PT Aug. 09, 2021
In 2016, just after the birth of his son, Ady Barkan was hit with a devastating blow: He was diagnosed with amyotrophic lateral sclerosis.
Barkan said that when he first received the news of the terminal illness, his world fell apart. As the large medical bills began pouring in, he was inspired to take action against what he says is a flawed health care system in the U.S.
As his ALS progressed, leaving him paralyzed and unable to speak, Barkan took action and used his ailing body as a weapon in the fight for health care rights.
“I learned we could transcend the darkness of this moment, of any moment, by joining the struggles of past and future freedom fighters by coming together in pursuit of a better world,” he said.
In one of the most inspiring episodes of “LA Stories with Giselle Fernandez,” Barkan talks to Fernandez using unique eye gaze technology that allows him to form words and answers using only a computer screen and his eyes. He opens up about journey with ALS, which is chronicled in the recent documentary “Not Going Quietly,” which premieres in Los Angeles on August 13.
Barkan first rose to fame after a chance encounter with then Sen. Jeff Flake, who was urged by Barkan to vote against tax cuts that would hurt his access to health care, along with millions of others.’
Video of the encounter went viral, and while Flake ultimately voted for the tax cuts, Barkan seized the opportunity to use his newfound platform to grow his activism for health care rights.
Barkan even helped create the “Be a Hero” fund, which uses fundraising to create change.
“Hope is not a state of mind,” he said, “It’s a state of action.”
As a father of two, Barkan said his children provide new motivation in his battle for patient rights. Though his body is ailing, he has staged protests and sit-ins while confronting lawmakers directly in an effort to make change.
Knowing that his time is limited, Barkan wants to do everything he can to leave the world in a better place for his kids. While the battle with the devastating disease is hard, Barkan has hope that something good will come out of the diagnosis.
“I may not live to see us win every fight I’ve taken on,” he said. “But I know one day, someone will. Perhaps that someone will be my children or yours. And that’s motivation enough for me.”