Health-Care Activist Ady Barkan Debuts Documentary at Hometown Screening

‘Not Going Quietly’ Follows Santa Barbara Father’s Journey After ALS Diagnosis

Credit: Courtesy

Santa Barbara activist Ady Barkan held a hometown screening at the Metropolitan Fiesta 5 Theatre on Sunday, August 22, for the documentary Not Going Quietly, a cohesive tale of his diagnosis with ALS, his subsequent loss of many major motor functions, and his fight for universal health care throughout the country. 

Following the screening, Barkan shared his gratitude for his caregivers, not only for their personal sacrifices, but for also being a constant support in his life.

“You make my life possible,” Barkan said through his computerized voice box — the documentary details the slow deterioration and eventual loss of his natural voice. 

The film itself was a tale of two concurrent journeys: Barkan being launched into the spotlight after confronting an Arizona senator and becoming a bird-dogging political activist, and his trials of coping with a debilitating neurological illness as a young father.

The documentary starts shortly after Barkan’s diagnosis and some time before his viral confrontation with former Arizona senator Jeff Flake, who Barkan famously pleaded with to save his life and “be a hero.”

From left, Ady Barkan, Rachael King, and producer Amanda Roddy at Sunday’s premiere of ‘Not Going Quietly’ | Credit: Jun Starkey

That specific line launched a movement headed by Barkan and his associate Liz Jaff, who is heavily featured in the documentary as Barkan’s activist partner-in-crime. Barkan and Jaff created the Be a Hero campaign together before setting off on the Summer of Heroes road trip in 2018, which the documentary follows. The expedition involved Barkan, Jaff, and a group of activists traveling through 22 states in 40 days to confront members of Congress about their positions on preserving provisions for preexisting conditions in the Affordable Care Act. 

The documentary’s producer Amanda Roddy and Barkan’s wife, Rachael King, who is also an author and professor of English at UCSB, also attended and said a few words following the screening, echoing Barkan’s statements of gratitude for caregivers and emphasizing that activism can lead to real-life changes. 

“Anyone can get involved in the election process to some extent,” King said.

Roddy said Jaff initially reached out to her and to the film’s director, Nicholas Bruckman, about Barkan. However, it wasn’t until Roddy and Bruckman, along with their New York–based production company People’s Television, created Dear Carl, a short film summarizing Barkan’s struggle with the health-care system, that they decided to do a full documentary on Barkan. 

“We’re grateful he took the journey he did,” Roddy said.

More screenings for the documentary Not Going Quietly will be held across the country in the next few months, and a calendar of those screenings can be found on notgoingquietlyfilm.com.


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