'He used his story as a weapon': the inspiring tale of activist Ady Barkan
By the time Ady Barkan appeared before Congress in May 2019 to advocate for Medicare for All, he had lost the ability to speak. The then 35-year-old lawyer and activist was dying slowly of paralysis from amyotrophic lateral sclerosis (ALS), but as his body weakened, his voice carried. Speaking through a computerized system that converts eye movements along a keyboard to speech, Barkan held the room as he urged lawmakers to dramatically overhaul the US healthcare system.
Even with good private insurance, he explained, he and his family paid $9,000 a month for round-the-clock care. To go on Medicare would relegate him to a nursing home, away from his wife, Rachael King, and their then three-year-old son, Carl. “We are cobbling together the money, from friends and family and supporters all over the country,” he told Congress. “But this is an absurd way to run a healthcare system.”
His testimony forms both the first few minutes and the emotional climax of Not Going Quietly, a new Duplass brothers-produced documentary on Barkan’s improbable route to become one of the leading voices for ethical, accessible healthcare in the US. With unvarnished scenes of caregiving and a heaping dose of Barkan’s sardonic wit, the film, directed by Nicholas Bruckman, traces the central paradox of his life post-diagnosis: the weaker he gets, the louder he becomes.
https://www.theguardian.com/film/2021/aug/11/ady-barkan-not-going-quietly-documentary
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