Could you tell us a bit about how the idea of the film came about? Did you know Ady before his diagnosis or have you approached him with the idea of making a movie once he appeared publicly? Whose idea was the film and what was the goal with it?
I met Ady in 2018 right after he had confronted Senator Jeff Flake on an airplane about the impact of the GOP tax plan. Ady has ALS, and he wanted Flake to know that the way Senator Flake would vote on the bill would allow him to continue to afford his breathing machine. Shortly after that exchange went viral, People’s TV was hired to create a short launch film for Ady’s “Be a Hero” campaign. When I met Ady, I realized that not only is he incredibly funny in the face of this difficult situation, but also that he found a way to turn what had happened to him as a weapon for change. As a filmmaker, that’s the kind of storytelling I care about. That first day, I told him that even though we’re doing this short promo video for his campaign, there’s a bigger story there. The reason I asked him immediately is because when I met him, Ady only had six months left to speak. That accelerated what would normally be a documentary filmmaker’s long courtship process. Fortunately, he was very receptive!
You are probably aware that our healthcare system here in Hungary is very different from the one in the USA. Could you please briefly explain to us by whom are covered the costs of treatments, equipment and personal carers in a case similar to Ady’s? Does the state have any direct responsibility or are the private insurance companies the only ones who pay (if they do…)?
The United States has a very stratified and unequal healthcare system; it’s one of the only rich nations on the planet that doesn’t provide access to healthcare to all of its citizens. There are programs for veterans and low-income citizens such as Medicaid and Medicare, but these are constantly under attack by the right-wing and must be defended by progressive activists like Ady and the Be a Hero team. Ady is very lucky to have good private insurance through his employer, The Center for Popular Democracy, and through his wife’s employer. However, he is aware that millions of Americans are not as lucky and are stuck with enormous medical bills from medical situations that are much less grave than ALS.
Is Ady’s situation unique or do other people diagnosed with similar diseases also have the opportunity to live with their families? Did Ady have to fight to receive a specific equipment or treatment or was his motivation only based on raising awareness of people’s struggles living with a similar condition?
Ady himself had to fight with his insurer to gain access to his breathing machine he uses in the film. The insurance company labeled it “experimental” and tried to deny it to him. But because of his prestige and forcefulness as an activist, he was able to win a lawsuit against his insurer to get the equipment provided to him. In spite of this victory, Ady recognizes that many millions of people are not necessarily in a position to fight their insurer, and those who do fight often lose. The fundamental problem we have in the US is that the insurance companies don’t add any value to the system, instead they extract resources from it and take away money that could otherwise be given towards services, doctors, hospitals, and their patients. Those resources and funds are devoured by this large financial engine of the insurance system, which has incredible power in Washington D.C. and routinely lobbies against universal healthcare programs, such as the kind that Ady is lobbying for in Not Going Quietly. The people-power you see in the film and the efforts made to generate humane policies exist in certain countries, like in Canada and Europe. Even though those systems aren’t perfect, they take the work of activists seriously in those countries in order to protect them and maintain those systems.
How did the film and the quick deterioration of Ady’s state impact you personally? Have you been in closer contact with people like him or was it film that brought you closer?
I grew incredibly close to Ady making this film and spending years with him and his family. It was certainly very difficult to watch Ady, whom I now consider a close friend, go through a disease as devastating as ALS. But on the other hand, it was an incredible privilege to be so close to him and be at his side through much of this journey. Ady really forces you to reconsider your own privilege, gratitude, how you decide to deal with the situations that arise in your life. The uplift and inspiration that I hope audiences get from this film is something I was fortunate to experience every day in my relationship with Ady.
Ady’s impact, without doubt, has reached far in your country. Could you maybe give us concrete examples of his influence? Do you think that your film has also contributed to spreading his message? How was the reception of the movie in your country?
Ady has been called “the most powerful activist in America.” This is because of how immensely effective he is. A lot of times people think, oh it’s just his illness and they just feel bad because he’s in a wheelchair, but he’s actually a very strategic organizer and had been one long before his diagnosis. The new voice and platform that his illness gives him only increases his power and reach. In the film, you see Ady as an instrumental part of the Democrat and Progressive wins during the 2018 midterm elections, which was an important blowback to Donald Trump’s agenda and ultimately set the stage for Donald Trump’s defeat in 2020. You also see Ady’s work influencing the 2020 presidential primaries, pushing Joe Biden, Kamala Harris, Bernie Sanders, and others towards his vision for a universal healthcare program. Ady continues to do his most important work long after the movie is over – he is now fighting to make sure that home care funding is part of the large spending bill going through Congress in the United States. He’s continuing the fight through his Be a Hero campaign to win universal healthcare through a Medicare-For-All program. I have been overwhelmed by the response the movie has gotten, not only in the US but internationally. I hope it can support his work, and also be a tool for activists all over the world that are trying to use their stories for social change. To get involved and support Ady’s movement, you can go to joinady.com and follow him on Twitter @AdyBarkan. He is outrageous, funny, and engaged, and he will inspire you every day.
Interview: Péter Balázs, Önállóan lakni, közösségben élni project