January 8, 2018

A Place at the Table: Doc Filmmakers with Disabilities on Building Careers and Disproving Stereotypes

Jennifer Brea, the director and subject of 'Unrest.' Photo: Jason Frank Rothenberg/Shella Films.

I think that it's safe to say that most of us love working in documentary film because the work we produce does something to make the world a better place. Shining a light on injustice is noble work. Celebrating an artist or another culture lifts all of us up and creates joy and a connection to a better world around us. The fact of the matter is, most of us are dedicated to social justice, diversity and inclusion in our lives and in our work.

Over the years, we've seen the emergence of filmmakers from underrepresented communities, which has brought nuance and authenticity to documentary films. However, one community is still far behind. I'm talking about my community: the disabled community.

We are a community that isn't very well known. In fact, I'd venture to say that the general population isn't aware that there are millions of us out there who identify culturally as disabled or Deaf. For those of us who do identify that way, there is a rich history of art, dance, theater, music (well beyond Stevie Wonder or Ray Charles) and now, film. I believe that we need to tell our stories because we can do so from our own perspective, not one that is filtered through someone else's lens. Who is more likely to make a film about police violence against the disabled and Deaf? Who better the make a film about the life-and-death consequences of rolling back the ACA and Medicare? We make films that go well beyond the worn-out tropes of what being disabled and Deaf is all about. Being able to view a broader perspective on life benefits us all.

I sought out the perspectives of a number of filmmakers with disabilities for this article. Some are names you may know, while others are emerging filmmakers.

I'm encouraged and excited by the accomplishments of Jen Brea and her documentary, Unrest; Brea lives with ME/CFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome). Four years before her 2017 premiere at Sundance, Jason DaSilva premiered his documentary When I Walk there; he later received an Emmy Award for his film. When I Walk chronicled his life as Multiple Sclerosis took control of his body. Both filmmakers took us on a journey inside their lives as they dealt with disabilities brought on by illness.

"It's helpful if we think about the expectations that majority, dominant cultures have always had for minority cultures," Brea notes, via email. "In fiction, people with disabilities or illness have always been magical, inspirational, sexless, tragic or triumphant—the catalyst for the real protagonist's transformation. It parallels the way we have written non-white characters in films made by white people, transgender characters in films made by cisgender people. More and more, we are learning how to call it out when we see it happen to members of these groups. We've counted the number of words women are allowed to speak in a typical narrative film, relative to men. But when it comes to people with disabilities, there's a near universal blindness to these dynamics on the part of curators, reviewers and journalists. We need to start learning how to recognize it when we see it.

"What happens in the fiction world," Brea continues, "is a reflection of the broader culture's erasure of disability and illness, and I think that it does bleed into the documentary. You see it in the lack of any specific funds to support directors with disabilities, and the lack of spaces for conversations focused on these issues, not to mention that disabled filmmakers are rarely invited to participate in existing spaces and conversations about diversity, which usually focus on gender and race. (This is why I try to turn every 'women in film' panel I am on into a women, disability, race, gender and sexuality panel—because power and hierarchy work in very similar ways, whatever the identity or ideology support for that hierarchy.) There hasn't been a single award I have won where I haven't been called in advance because there always needs to be an elaborate plan to get me on the stage. It always works out just fine but it is a reminder that someone in a wheelchair accepting an award on stage, sadly, isn't something we expect to see very often."

The biggest barriers we face are the attitudes of others. If you haven't seen someone who uses a wheelchair directing, editing or acting, it's harder to imagine that it's possible. The stereotypes that we need to disprove include the belief that we can't do the job or that we don't have the stamina.

From Victor Pineda's <em>12 Bends</em>. Courtesy of World Enabled

Victor Pineda has been hard at work on his personal journey documentary, 12 Bends. Filming has taken him from Burning Man to Banares, the City of the Dead. A genetic muscular condition means that he has very limited use of his arms and legs. He uses a power chair to get around most of the time, but that hasn't stopped him from being carried up to Machu Picchu or down to the banks of the Ganges. He feels as though his disability is "like a key that unlocks insights into compelling themes such as vulnerability, imagination, creativity, resilience, persistence, courage and the absolute absurdity of life in and of itself. I am drawn to these topics as my stories explore frailty, loss, redemption and strength. The stories worth telling are the ones that expose a universal truth through a very particular and unique perspective. That's what this is all about for us."

You might ask, How can someone who is blind direct? How can a Deaf person be an editor? The answer is, You don't have to reinvent the wheel. People with disabilities have had to figure out how to live in a world that wasn’t built with them in mind; many people with disabilities excel at troubleshooting and figuring out work-arounds.

Reid Davenport, a filmmaker with cerebral palsy, occasionally picks up editing work on the side. Reid has an adaptive keyboard and a set of shortcuts that he's developed that help him to fly through his work.

Brea couldn't leave her bed most days while working on Unrest, but she sent a crew to the location and communicated remotely using teleconferencing technology. She believed that if she couldn't be there physically, as long as she had eye contact with the subject, she would be able to connect with them.

DaSilva was already a documentary filmmaker when he developed multiple sclerosis. He loved being a "run-and-gun" filmmaker. The biggest change he's had to make because of his MS is that he now works with a larger crew than he did when he could carry and shoot with his camera. He needs an extra set of eyes. His crew now runs and guns with him.

What do we, as a community of documentary filmmakers, do to break down barriers to success for filmmakers with disabilities?

Day Al-Mohamed, who is blind, is making a documentary about the Civil War "Invalid Corp," a little-known Union Army unit comprised of disabled men. "The biggest roadblock to building a career, especially now, I think, is the invisibility of disability," she observes. "There is a lot of discussion about diversity in the industry; about women in film and women directors; about #OscarsSoWhite and the need for more LGBT representation. As a woman of color who is LGBT, I couldn't agree more. However, disability has not been a part of this discussion—not anywhere. If we are willing to acknowledge that biases exist when it comes to hiring individuals working with those identities, it is not difficult to imagine how the societal prejudices around disability would impact the opportunities available for filmmakers with disabilities. People with disabilities are not seen as legitimate professionals within the industry."

"I was once invited to a filmmakers brunch with the programmers of a major international festival that was on the second floor of a building with no wheelchair access," Brea recalls. "The programmers came downstairs to the lobby, bless them, with assorted pastries in their hands, embarrassed and feeling really badly about it. At a minimum, someone should have notified me that it wasn't accessible or it should have been marked on the program. I'm less concerned that I couldn't go to this particular event than I am that the fact that no one thought of these things means that people with bodies like mine making films isn't enough of a regularity in our world that access is universal."

And while funding is a major roadblock for all filmmakers, according to Pineda, "This is even more true to filmmakers with disabilities who oftentimes face seemingly insurmountable physical obstacles, social stigma and a general apathy from others about our contributions to stories that expose the fundamental nature and beauty of the human condition."

Day Al-Mohamed filming the Lincoln Funeral Train at the North California Transportation Museum. Photo: Julia Myers


Perhaps the best way to find your way into a community is by attending mixers and workshops. It's an easier way to meet people than a job interview. I've always maintained that part of the issue with the high unemployment level in the disabled community comes from people feeling uncomfortable around us. Are you going to hire someone when you worry about saying the wrong thing or unintentionally offending someone? I think not.

One organization that I've heard great things about is the Washington, DC chapter of Women in Film and Video and Docs in Progress. "Both groups offered opportunities to meet and connect with other filmmakers and, at least to my face, no one has ever questioned my ability to craft a film," Al-Mohamed maintains. "They've been supportive of me and my work and I would encourage other enterprising filmmakers with disabilities to explore similar options in their communities."

To this end, one should address the need for accessibility for all at your events. A flight of stairs is as good as a wall. People who want to be allies need to state the accessibility for their events and give potential attendees a way to request accommodations. To cite an example, last January, I couldn't attend an after-screening party at Sundance for a major documentary because it was held in a restaurant that was up a short flight of stairs. Was accessibility on the radar of the people that set up this event? I doubt it. Should it have been? I think so. Should festivals demand that all parties and workshops associated with the films they are screening be accessible? I think so. If a festival or film company is truly committed to diversity and inclusion, they should find leaving me out in the cold on Main Street unacceptable.

I'm happy to report that I have experienced some improvements in the past few years. All the screening venues at Sundance are accessible to wheelchairs. The buses and shuttles for attendees are almost all capable of carrying a wheelchair. And I had a great experience at IFP Week in September. They took accessibility very seriously and I encountered very few issues.

Accessibility isn't just about wheelchairs. It includes people with hearing, visual, cognitive and mental health issues. Every person has the capacity to create art. Every person deserves a place at the table.


Jason DaSilva in the East Village, NYC. From 'When I Walk,' a Long Shot Factory release.

How We Make It Work

Behind every successful film, you'll find a talented team of people.

One thing that all the filmmakers with disabilities that I spoke with for this article told me was how important it was for them to cultivate their team. I'm not saying that this is uncommon for filmmakers without disabilities, but I want to express how valuable our experience with our disabilities has been to help us lead and retain the people around us. When you must rely on others to help you through the day, be it with dressing, eating and personal care, you learn how to clearly instruct your crew. You've had to develop a heightened talent of planning ahead and organizing. And you have to be deft at being able to communicate your vision when you aren’t able to hold the camera or see the image in the editing room.

"Filmmaking, by its very nature, is creative, and having unique and different perspectives enriches the content, the craft and the team," Al-Mohamed notes. "It is about working together to reinforce each other's strengths and cover for each other's weaknesses; it is about planning and last-minute problem-solving, with the goal of creating an amazing piece of work. Disability, at its heart, is about adapting to the environment, collaborating with others and accommodating each other to be successful."

Having a disability can be an advantage beyond being able to park in those blue zones. DaSilva feels that his disability has made him think and work differently than before. He has a broader perspective now, beyond the traditional ways of thinking about documentary film. For Jen Brea, "I think my disabilities have made me a much more creative person. A more ambitious person. And a more fearless person. I try to view my disabilities as a constrained design problem and am constantly inventing new hacks, routines and methods to both live and work. So my presumption in life now is that every hurdle can be worked at and worked out. I also think living with a disability has given me a new way of seeing and has definitely influenced my aesthetic sensibilities. Everything about the way I view life, time and human behavior has changed. I'm excited to explore how that will express itself in my art, whatever the subject."

James LeBrecht is the founder of Berkeley Sound Artists, an audio post-production house that specializes in sound for documentary films. He is the co-director and co-producer with Nicole Newnham (along with producer Sara Bolder) of the in-production documentary Crip Camp, which is the story of a revolutionary summer camp "for the handicapped" that he attended in his youth.