Jennifer Brea is a filmmaker, writer, and data wrangler. She earned her AB in Politics from Princeton University, and is a TED Fellow. Prior, she was a freelance journalist in China and East and Southern Africa.
“Unrest” premiered at the 2017 Sundance Film Festival on January 20.
W&H: Describe the film for us in your own words.
JB: When I was 28, I was a PhD student at Harvard and engaged to the love of my life. Then I came down with a terrible fever. Although doctors told me my symptoms were “all in my head,” I grew progressively more ill, and within months I was unable even to sit in a wheelchair.
Eventually, I went online and found a hidden world of millions of people confined to their homes and bedrooms by ME, an illness commonly called chronic fatigue syndrome. “Unrest” follows my personal story as my husband Omar and I, newlyweds, grapple with how to live in the face of a life-long illness.
It also follows the stories of four ME patients around the world, as modern technology enables us to connect, bedridden, across states and continents.
Ultimately, the film goes beyond this specific disease to become a portrait of the human capacity for resilience and love despite life-altering loss.
W&H: What drew you to this story?
JB: I often say that I didn’t have a choice in making this film — I needed to film to save my own life. I began filming in part as a way to convey what I was experiencing to my doctors, to show the severity of it in a way that words failed to convey.
But mostly I needed a way to understand and maybe find meaning it what had happened to me. I had always been a writer, but when I became bedridden, I lost my ability to read or write; filming allowed me to make sense of the world. It was a way not to lose myself.
Telling this story was also a way of connecting to other people and other environments. Although I couldn’t physically travel myself, technology virtually transported me to new places. I got to know people intimately, inside of their bedrooms, and began to regain a piece of who I used to be — a traveler, constantly seeking, eager to experience the world.
And I had a sense that by filming my experience, even at my lowest points, perhaps one day what was being recorded could help others and bring about a recognition of this illness.
W&H: What do you want people to think about when they are leaving the theater?
JB: I want people to come away from the film knowing that ME is a serious, life-altering illness with a long history, and that it has been gravely neglected because of sexism, and because of ignorance and biases within the medical community.
I want people to know that there are millions suffering invisibly because science and medicine do not see us, because our disabilities are invisible, or because we are invisible to our communities — trapped in homes and bedrooms.
I want people to have seen and experienced people living with disabilities as complex and fully human. And I want people to walk away with a sense that life is fragile, life is precious, and we are all temporary, but that when faced with unforeseen obstacles, we all have the potential to find resources within ourselves we didn’t know we had.
W&H: What was the biggest challenge in making the film?
JB: The realities of how we made “Unrest” brought a lot of technological challenges. I was bedridden for much of the production; I tried several times to be at local shoots and even flew out for one, but the repercussions on my health were always severe. Instead, we came up with technological workarounds.
I conducted interviews on Skype and directed remotely with producers and crews around the world. It was a huge challenge to manage a growing production team from afar, across time zones and cultures, while shooting with subjects who have profound disabilities, some of whom could only be filmed minutes at a time.
But the fact that we ultimately made this film shows that it’s possible to overcome the challenges of living with profound disabilities and share our stories with the world — especially if you have the support of an incredible team!
W&H: How did you get your film funded? Share some insights into how you got the film made.
JB: I had never made a film before and didn’t know any filmmakers, so I decided to do a crowdfunding campaign to raise money. It took six months to shoot six days to create the trailer for that campaign. I’d shoot at home or travel to New York for a day of shooting with consulting producer Kiran Chitanvis, then crash and be bedridden for the next 29 days.
Eventually, we launched a Kickstarter campaign for $50,000 — and met our goal in less than 48 hours, ultimately raising $212,000. I learned that we had a passionate, connected community of ME patients and allies who were waiting for this story.
I then started applying to every grant, pitch forum, and meet market possible to expand our network within the film making community. A few months after the Kickstarter campaign, I received a grant from the Sundance Institute and then other partners started to come on board.
With time, that grew to include a team of incredibly supportive executive producers and other individual funders. We are really lucky. It was a constant process of bootstrapping, which I think is part of why documentary tends to be more friendly to women directors.
You don’t need to have everything in place before you start. You can see the thing you want to make and then just go for it, and take the risk (but have the confidence) that it’s an important story to tell and that you can grow your community of supporters over the life of production and post-production.
W&H: What does it mean for you to have your film play at Sundance?
JB: When I started making this film, it was like I was living in an alternate reality — I was grappling with this illness that I knew nothing about and that others knew nothing about. I had never experienced what that felt like: how painful it is not to be able to see your own reality and experience reflected in your culture, not to be able to understand what your experience means and to know that you can survive this.
The ME community hasn’t had access to many public-facing stories. Our stories are amazing, but it’s often felt like so few outlets were reporting on it accurately or grasped just how deep the rabbit hole went.
So to have this film and my story premiere at a festival like Sundance feels like this could be the beginning of introducing our hidden world to the public. I feel amazed, deeply honored, and humbled to have the platform to bring this community I love into the light. We’ve been waiting.
Also, as a filmmaker supported by the Sundance Documentary Film Program (DFP), it feels incredible to premiere the film at the place that helped birth it. The DFP was a huge part of my journey to learn how to be a filmmaker. They take risks — I was a risk, and this story was a risk. It’s beautiful that they provide a platform for new voices to tell stories that no one has heard before.
W&H: What’s the best and worst advice you’ve received?
JB: The best advice I’ve received is that if you don’t quit, you’ll find a way. You can’t know in advance what your path is going to be, but if you have a strong vision of where you want to go and you persist — never ever give up, pursue every opportunity you have to the full, give it everything you have to give — you’ll get there.
I wouldn’t say that I’ve received bad advice, but I’ve learned that advice is another word for other people’s opinions. And I find all feedback is useful if you know how to filter it and evaluate it against your own instincts and vision, because only you can know the film you want to make.
I think the most important thing I learned from making my first film is that there are a few fundamental questions that truly matter: What is your vision and did you realize it? What did you want to say and did you say it? What is your intention and did you see it to the end? Were you successful at taking that thought, that feeling that you had and seeding it into the mind and heart of another person?
I think that’s what I learned, in different ways, from a lot of seasoned directors and editors I met along the way. Never, ever start with the question of, “What does the audience want?” Or “What does that distributor want?” That’s the fastest way to spread yourself in a hundred completely unhelpful directions and wind up not creating art.
W&H: What advice do you have for other female directors?
JB: My advice is to just go for it. Don’t ask for permission — just do it. It’s not rational to have the ambition to try to do something as insane as making a film, and that sort of risk-taking is not a trait that our culture rewards in women. But it’s important to know your mind and fight for what you want, to get help from other people, to build a team.
Claim the space because it’s yours, and surround yourself with people who will lift you up and empower you. The worst thing women can do is doubt themselves. Know your worth — maybe even think you’re better than your worth (after all, the science says that’s what men on average do!) — but at the very least, know it.
My other advice is to hire women in technical fields. Make sure you’re interviewing DPs, editors, composers, colorists, and sound designers who are women. We have a lot of women on our team in key leadership positions and in important technical positions. It wasn’t intentional but I’m very happy it worked out that way. But I still think I could have done better.
W&H: Name your favorite woman-directed film and why.
JB: My current favorites are “Citizenfour” and “Risk” by Laura Poitras. And “Cameraperson” by Kirsten Johnson. I miss traveling. I admire moxie. It’s hard not to feel the presence and commitment and sheer audacity of those women through their films.
W&H: Have you seen opportunities for women filmmakers increase over the last year due to the increased attention paid to the issue? If someone asked you what you thought needed to be done to get women more opportunities to direct, what would be your answer?
JB: The main thing is to make financing more accessible. I’m really excited about groups like Gamechanger Films, Chicken & Egg, Impact Partners, and the Sundance Institute’s Catalyst Initiative, all of which provide opportunities for new, female indie filmmakers to find funding.
Those opportunities need to grow, and not just at an indie level, but at a bigger-budget level. We have a long way to go, but I’m heartened that there’s at least now a universal recognition of the problem. That’s the first step.
