Date uploaded: 2021-08-12 20:24:56
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.
His choice is conveyed in the documentary “Not Going Quietly,” the film about Barkan’s journey with ALS set to premiere Friday. 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.”
“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," Barkan told USA TODAY. "Politics and movement building is about bringing people together to do much more than we ever could accomplish alone."
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.
