It’s unlikely any of the directors who made this year’s Oscar documentary shortlist would describe their filmmaking experience as a breeze. But for Jennifer Brea, making Unrest posed a unique set of challenges. It’s a story of her journey, and others like her, who live with ME—Myalgic Encephalomyelitis—often referred to as Chronic Fatigue Syndrome.
“Yes, I directed from bed,” she tells Deadline. “We found technological ways to make filmmaking accessible to me given those disabilities.”
Among those technological workarounds was a Teradek system that allowed her to see video as it was being recorded in the field at points around the country and the world.
“I was actually able to watch with a 30-second delay what the DP was shooting and either call or text back and forth throughout our shoot days to our producer to ask questions, give notes, be in constant communication about what we were shooting and what it was looking like,” she explains. “So it was a chance for me to direct remotely.”
Overcoming obstacles has become a modus vivendi for Brea, who was a 28-year-old graduate student at Harvard when she developed what would later be diagnosed as ME. The illness began as a dangerously high fever that, instead of passing, left her with debilitating fatigue and neurological symptoms. As her health declined she decided to record her altering world.
“On its most fundamental level Unrest is about what happens when your life is being uniquely destroyed by something you never imagined happening to you,” Brea observes. “Something happens to you, and then how do you survive that? How do you reconstruct yourself in the wake of that? I think that was really what animated a lot of my choices around how the story was told, but also the people that I gravitated toward telling the story.”
The filmmaker has become a strong advocate for people with ME and for research into the disease, which affects as many as 2.5 million Americans, according to an Institute of Medicine report. Despite how common the condition is, funding for studies on it has lagged, Brea says.
“In some ways the treatments and the science are a reflection of how much the public and the culture value the disease—how they see it and how they value people living with it,” she remarks. “The cure is like the terminal end of a long process that starts with people just understanding how serious this disease is and having that compassion and belief and support of patients.”
Among Brea’s goals is to remove the cloak of invisibility that has left many disabled people marginalized in our society.
“You’re living this experience and you look out in your culture and you see this void. Storytelling is all about telling stories about ourselves to each other and when that gap is missing and someone says, ‘Here. Here you are. Here, you exist,’ that’s a very profound thing,” she notes.
Unrest airs Monday night on the PBS program Independent Lens. It is scheduled to screen in the coming months at events around the world, from Finland to Australia, and Brea was well enough to participate in Q&As and other discussions around the film’s theatrical release in the U.S. and United Kingdom.
In December the film made the coveted Oscar documentary shortlist, one of 15 still in contention for an Academy Award nomination for Best Documentary Feature.
“I was thrilled and just really moved and honored with the recognition because it’s coming from other filmmakers…We were not on anyone’s radar in terms of the awards press. I would see these lists of like ‘the 40 films that have a shot’ and we’re not even on the list of the 40,” she laughs. “So I think people were surprised: ‘What? What is this little film doing here?’ I do think this is a film where you have a certain set of expectations about what it is and what it’s about, and then when they actually watch it, [people] realize the experience of the film is completely different to what they expected.”
Brea constitutes one of very few people with disabilities to earn recognition from Academy voters.
“I don’t know if there’s ever been a director with a profound disability who’s been [Oscar] shortlisted for anything,” she points out. “Before I got sick I never even would have thought about it. And now I am where I am, I can’t help but wonder, why is that the case?”
Unrest marked her directorial debut, but Brea plans to make more films in the future.
“[Unrest] was an exceptionally hard story to tell,” she notes. “I think it’s important to seek out those stories that are truly hidden and that we aren’t talking about. At the same time, maybe I’ll go easier on myself next time around.”