Ady Barkan- Health Care Activist Dying of ALS, Not Done Fighting 'Weaker I Get, The Louder I Become'
- USA Today, Aug. 11, 2021.
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 a coming 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 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.” "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," Barkan told USA TODAY. "Politics and movement building is about bringing people together to do much more than we ever could accomplish alone."...
- More + Video,
https://www.usatoday.com/story/news/nation/2021/08/11/ady-barkan-progressive-activism-health-care-not-going-quietly-documentary/5526337001/
- WATCH: Ady Barkan’s full speech at the 2020 Democratic National Convention. Aug 18, 2020, PBS. Progressive activist Ady Barkan addressed Democrats during the 2nd night of the DNC. Barkan, who was diagnosed with ALS in 2016, called for more access to health care, saying "today we are witnessing the tragic consequences of our failing healthcare system." The coronavirus pandemic upended both parties’ traditional conventions. Instead of in-person events, the program each night features a number of speakers & musical performances virtually across the country.