After Ady Barkan was given three or four years to live, he had to make a choice: How would he spend the time he had left?
He was a lawyer and progressive political strategist with a newly personal stake in advocating for health care for all after battling with his insurance company to cover the care he needed. He was also a brand-new father.
Barkan, now 37, was diagnosed with amyotrophic lateral sclerosis, or ALS, in 2016, shortly after the birth of his first child, and just weeks before former President Donald Trump was elected to office.
Would he spend as much time as he could with his family — his wife Rachael King, son Carl and daughter Willow — or would he pick up the mantle for disability justice? Could he do both?
To his daughter, after she was born, Barkan said in an upcoming documentary: “We knew you would not have a carefree childhood. But we decided to be hopeful and brave.”
His choice is conveyed in the documentary “Not Going Quietly,” the film about Barkan’s journey with ALS set to premiere Aug. 13. The documentary follows Barkan on his path from his diagnosis to becoming one of the most prominent health care advocates in the country, even being called “the most powerful activist in America.”
“The paradox of my situation is that the weaker I get, the louder I become,” Barkan says in the film, using the assistive technology of a computer voice.
Barkan uses a technology that allows him to use his eyes to type into a computer, which then reads his words aloud. He spoke to USA TODAY this way from his Santa Barbara, California, home ahead of his documentary’s premiere.
“ALS is a death sentence, and I have had to grapple with the knowledge that I’m not going to be around for as long as I had hoped. Politics and movement building is about bringing people together to do much more than we ever could accomplish alone,” Barkan told USA TODAY.
At his diagnosis, Barkan was given three or four years left to live. His disease has no cure, but the life expectancy of someone with ALS can vary. Barkan ultimately underwent a procedure called a tracheostomy to allow a ventilator to breathe for him.
The stirring documentary traces the time from Barkan’s diagnosis, the beginnings of his health care activism, through the deterioration of his natural voice and, ultimately, his determination to build the foundations for a movement he hopes will last long after he is gone.
More on Ady Barkan:Father dying of ALS buys $100K ad to help Democrat in Ohio midterm
‘I live a beautiful life’:What wheelchair users wish you knew — and what to stop asking
Barkan’s story with ALS received massive attention in December 2017 after he confronted former Republican Sen. Jeff Flake on an airplane over a GOP tax-cut bill he worried would gut health care and disability funding. The hashtag #FlakesOnAPlane went viral.
“What should I tell my son, or what would you tell my son if you pass this bill and he cuts funding for disability and I can’t get a ventilator?” he asked Flake.
Flake voted to pass those tax cuts, but teaming up with other political activists, Barkan took the momentum from that encounter to found the political action committee Be A Hero, and hit the road leading up to the 2018 midterms with the goal of flipping the House blue — a goal that would ultimately be accomplished.
But as Barkan traveled, his body became weaker. Viewers of the documentary can see the toll the tour took on his body, and the change in his ability to speak. Barkan uses a motorized chair to get around and is assisted by a team of caregivers.
“If I had to leave one last message with my natural voice, I think it would be ‘Peace out, m—–f—— ,’” Barkan says at one point in the film when it’s clear his ability to speak and be understood is waning.
Now, Barkan has turned his attention to fighting for funding for home- and community-based services, something President Joe Biden committed to prioritizing during his administration.
“Even good health insurance does not cover the full-time care that living with ALS requires,” Barkan said. “Because of this, many others with ALS are placed in nursing homes where patients are merely maintained and isolated from their loved ones. To be honest, I don’t know if living in a nursing home would provide a quality of life that I would be willing to tolerate.”
“The dark truth is that many Americans quite literally cannot afford to live,” he added.
‘I am not ashamed’:Disability advocates, experts implore you to stop saying ‘special needs’
Barkan met with Democratic presidential candidates during the 2020 primary and released videos with their discussions on health care policy. Though he initially supported more progressive candidates, Barkan ultimately endorsed Biden and went on to speak at the Democratic National Convention.
“Despite the literal and figurative distances between us, I know that the vice president heard what I was saying. He listened, he understood, and he promised to continue doing both after he is elected,” Barkan said in his endorsement of Biden.
Biden told Barkan he would seek to expand home- and community-based health services, which is a priority for many Americans with disabilities.
Taryn Bailey, a 16-year-old in Arizona who was born with a genetic condition resulting in physical and cognitive disabilities, has been the recipient of home-based health services since she was an infant.
Her mom, Dawn Bailey, told USA TODAY that without these services, which include physical therapy, speech therapy and occupational therapy, she would be forced to live in a skilled facility, away from home.
“For us, it’s important to have her home, where we can enjoy her and raise her and be her parents as well. With that, it means we’re also her caregivers,” Dawn Bailey said. “We’re fortunate that I can stay home and provide a good portion of this daily care for Taryn… but a lot of families don’t have that opportunity, and I don’t think it’s right that if they can’t do that then the option is their child can’t be at home with them.”
Biden proposed $400 billion over eight years to bolster home- and community-based services, as part of his robust infrastructure plan. But partisan negotiations left that funding to the wayside, and Democrats hope to now pass a second track of their infrastructure agenda: an ambitious $3.5 trillion “human infrastructure” plan that seeks to improve the nation’s housing, education and health care as well as take dramatic steps to address the growing threat of climate change.
Barkan said Democratic lawmakers owe it to the American people to pass funding for home care after millions of voters organized to deliver the White House, House and Senate to Democrats.
“Democrats must meet this moment to deliver on home- and community-based services and on popular reforms to expand and strengthen Medicare. It’s not only a wise political move, but the morally right thing to do,” Barkan said.
“I get to live a beautiful and full life at home with my family and watch my kids grow up because of home care,” he said.
Barkan ultimately chose to spend his time, which he calls in the documentary, “the most precious resource we have,” fighting to make his children proud of him and leave the world a better, more equitable place for them to live, he said.
“I also want them to be able to know who I am and how their existence motivated me to fight for a better world until my last breath,” Barkan said.
Barkan’s ability to share his story in a way that lets the average person see their own family in his family is part of what makes his advocacy so effective, said leading disability advocate Rebecca Cokley, a program officer for disability rights at the Ford Foundation.
“He has really drawn attention to the plight of millions of disabled people who can’t readily access services to live and thrive in the community,” Cokley said. “I’m confident knowing what the leadership pipeline is at Be a Hero, that there is the potential for long-lasting work.”
Barkan hopes his legacy will be one that brought people together to hold government accountable and tell their own stories. He said he hopes Be a Hero will draw participation from thousands interested in the same goal even after he is gone, and that more Americans will be inspired to become engaged in democracy and the political process.
“I may not live to see us win every fight I’ve taken on, but I know one day, someone will. Perhaps that someone will be my children or yours. And that alone is worth it for me,” Barkan said.