Film tells the story of SB resident who fights for health care justice
When Santa Barbara resident Ady Barkan was diagnosed with ALS in 2016, he made a vow — a vow to spend the remainder of his life fighting for healthcare justice and Medicare for All.
That decision set Mr. Barkan on an impassioned mission to advocate for families just like his by calling for dramatic reform of the country’s healthcare system. His tireless advocacy led him to participate in countless conversations with some of the nation’s top lawmakers, champion the “Be a Hero” movement and even testify on Capitol Hill in 2019 in support of Medicare for All.
In the years following his diagnosis, Mr. Barkan has since lost his ability to speak, and he now communicates using a computer system that tracks his eye movements and converts text into speech. But even though he can no longer verbally communicate, Mr. Barkan has not been silenced — in fact, his influence and his message are louder than ever before.
Mr. Barkan’s advocacy journey is documented in a film that is set to premiere at the Metropolitan Fiesta 5 Theater in Santa Barbara on Sunday at 5 p.m. The film, “Not Going Quietly,” tells the story of Mr. Barkan’s health journey and documents key moments from the last few years, including his diagnosis just four months after the birth of his son, Carl, and his historic testimony in support of Medicare for All.
Mr. Barkan and his wife, Rachael King, alongside his 24/7 care team will be attending Sunday’s premiere at the Fiesta Theater and will participate in a Q&A session following the film.
Ahead of Sunday’s premiere, Mr. Barkan told the News-Press in an email that bringing the film to Santa Barbara is an “extra special homecoming.” He said he’s looking forward to experiencing the film with the audience, seeing how they react to the film’s combination of light-hearted moments and difficult sequences.
“I’ve seen the documentary a few times now, but each viewing has felt unique because of the audience’s reaction,” Mr. Barkan said. “I hope viewers get a good laugh from the more humorous parts, particularly from Carl’s punchy one-liners. There are also moments in the film that are difficult to face, and that may feel too intimate to passively experience. In these vulnerable moments of discomfort, I look forward to seeing viewers grapple with these feelings to become active participants in the movement for health care justice.”
Since his diagnosis, Mr. Barkan has experienced many of the same struggles that disabled individuals face when it comes to paying for around-the-clock care. Even good health insurance does not cover the costs associated with the care that living with ALS requires, and that’s why many ALS patients end up in nursing home care, Mr. Barkan said.
It’s for this reason that Mr. Barkan is lobbying in support of President Biden’s proposed $3.5 trillion “human infrastructure” package, which includes a $400 billion investment into home and community based services to provide the disabled and aging population the means to receive care at home. Mr. Barkan is hoping the film promotes action and leads community members to urge members of Congress to support the Biden administration’s plan.
“My hope is that viewers will see this as a call to action to fight for the $400 billion dollars in funding for home- and community-based services by calling, emailing, texting their elected Senators and Representatives and making their voice heard,” Mr. Barkan said.
While Mr. Barkan and his wife, Rachael, were initially hesitant about allowing a film crew to document their “hectic and difficult life,” the couple now sees the film as a “memento” for their children, Carl and Willow, to remember their father after his death, as well as a testament to the struggles and triumphs in the fight for Medicare for All.
“I want my kids to know who I am,” Mr. Barkan said. “I want them to know that I love them, and that I cherish the life they will live, and the world they will create for themselves.”
“This film is about my family, but it’s also about the millions of Americans who came together during the Trump presidency to preserve our democracy,” Mr. Barkan added. “By showing the work of myself and others in the movement, I hoped we could inspire more people to also become involved in the fight for a more just nation.”
Amanda Roddy, the producer of “Not Going Quietly” told the News-Press on Friday that her ultimate hope is that the film shows the audience that fighting for democracy can be a “joyful and empowering experience.” During the film production process, Ms. Roddy said Mr. Barkan provided her and director Nicholas Bruckman with hope during a “hopeless time” in the country’s history with his charismatic and kind spirit.
When watching the film, she hopes audience members feel inspired to fight to preserve democracy and bring about change for the future.
“It doesn’t really matter who you are, how much activism history that you’ve had, anyone can join in and become an active participant in our democracy,” Ms. Roddy said. “I hope this film reminds them that our democracy is fragile, and it’s so important for people to get out there and fight for a better future for our children, our families and everyone that we love.”
“I hope that they see Ady, who’s fighting despite his declining physical abilities, and realize that no one really has an excuse. Everyone can do something.”