By Siobhan Simper
Have you ever seen yourself onscreen? I hadn’t – until I watched Unrest. From the opening scene, when a desperately ill Jennifer Brea tries to force herself up onto her elbows but fails, falling to the ground again and again until she finally manages to crawl into bed, I knew this movie was about me. Not just me, but the millions of people around the world who suffer from the debilitating medical condition, ME/CFS.
“It was like I had died, but was forced to watch as the world moved on … it’s like I don’t even exist, like I never existed.”
Unrest follows the story of director Jennifer Brea, her husband Omar, and others around the globe living with ME/CFS. Initially shot from her bed, Brea uses a novel teleprompter technology to interview bedbound subjects such as Jessica in the UK, bedridden for 8 years, who celebrated her 21st birthday by sitting upright for 5 minutes; Leeray, whose husband of 14 years left her when she fell ill; her daughter, Casie; and Whitney, former travel photographer who now lives in a darkened room on TPN and hasn’t spoken for a year.
The intimate shots transport the viewer directly into the lives of its subjects by streaming right into their bedrooms. Interspersed with old home video footage, this approach allows them to tell their own story, their way.
This is not an insignificant point in a world where movies about disability tend to be written and starred entirely by able-bodied people, which naturally fails to accurately reflect the lived experiences of people with disabilities. As Brea notes, stories of illness in the media only ever end in triumph or tragedy. Her film empowers its subjects (herself included) to be the architects of a new narrative.
“What terrifies me is you can disappear because someone is telling the wrong story about you, and I feel like that’s what’s happening to all of us who are living with this.”
Unrest also takes the viewer on a political and historical journey, exploring the disturbing likelihood for women with chronic illnesses to be dismissed as mentally ill or hysteric – a practice which still continues today. Particularly poignant is the story of Karina Hansen, a young Danish woman who was forcibly removed from her home by police officers and imprisoned in a mental facility for over three years, prevented from seeing her family.
Brea emphasises that Unrest is not about recovery, but a film which explores the question: what does chronic illness do to your identity, relationships and life possibilities? In doing so, it manages to tell a compelling love story, to be a cry to action, and to draw you closely into the lives of its interviewees, while avoiding all the tropes commonly associated with films about disability.
Despite its harrowing subject matter, Unrest is ultimately a movie about hope. Not only for those telling their stories in the film, but for other aspiring disabled filmmakers. Unrest’s success at film festivals such as Sundance is testament to the fact that people with disabilities can tell their own stories, and tell them well.
Brea’s parting lines “I am still here, I am still here” is both an assertion of her tenacity and a cry to be heard. And with the debut of Unrest, we are listening.
Unrest is available on iTunes and at selected screenings (see www.unrest.film/screenings for more).
Siobhan Simper is a psychology graduate and ME/CFS patient from regional Victoria. She writes at chronicallysiobhan.com.