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At the Kennedy Center premiere of the Renegades PBS American Masters series in September 2024, Beth Haller, co-director of GADIM, is speaking with the Biden Administration Special Advisor on International Disability Rights for the U.S. State Department, Sara Minkara. She is a blind Lebanese-American Muslim woman wearing a white head scarf and white jacket. She is holding a white cane. Her assistant is next to her; she is wearing a brown head scarf and grey sweater. In the background, audience members are milling about talking to the panelists. The seats in the auditorium are visible.

Now is the Time for Disability Representation in Documentary Films

By Beth Haller
Co-Director, Global Alliance for Disability in Media and Entertainment (GADIM)
& Executive Producer of Props No More

The time is now for truly authentic documentary (and scripted) filmmaking. GADIM’S documentary Props No More is building on a legacy of disabled filmmaker-led documentaries for at least three decades. What I mean by authentic documentary is the disability community makes its own content collaborating with other disabled people and nondisabled allies. This method allows disabled people to let their media creations flow directly from their minds and avoids the ableist gaze of many nondisabled filmmakers.

I have been in the media and disability space since 1991 when I was a science communication master’s student in the Philip Merrill School of Journalism at the University of Maryland, College Park. My 1991 master’s thesis set me on a path to study how Deaf and/or disabled people are represented in mass media, news, entertainment, or online media. My master’s thesis called Paternalism and Protest: Coverage of Deaf Persons in the Washington Post and New York Times, 1986-1990 investigated how the Deaf President Now movement in 1988 influenced better news coverage of the Deaf community from those two legacy newspapers.

In the 1990s, we began to see disabled people getting some funding to create their own documentaries. For many years as a mass media professor, I used the 1995 film, When Billy Broke His Head and other tales of wonder, in my media and disability courses. Journalist Billy Golfus takes viewers on his journey to understand disability issues, after he becomes disabled from a motorcycle accident. His disability road trip as a person with a traumatic brain injury (TBI) and limited use of his left arm and leg allows viewers to see the new inaccessible world he has entered. In a powerful scene, Golfus confronts his government caseworker about his inability to get a job to make more money because the U.S. government could take away his health care and dock his disability benefits ($520 a month at that time). My students would sometimes gasp at this scene. Sadly, the government benefits for most disabled Americans have not kept up with the modern cost of living, plunging them deeper into poverty. Another significance of the film is its inclusion of Ed Roberts, who is considered the father of the independent living movement, and the ground-breaking Disability Studies scholar Paul Longmore. They are both now deceased, but they live on in When Billy Broke His Head.

With video cameras getting smaller and digital camera technology arriving, many disabled and/or Deaf people became empowered to tell stories from their distinct perspectives. Deaf filmmaker Jade Bryan’s response the devastation of September 11, 2001 was to make the 2007 documentary 9/11 Fear in Silence: The Forgotten Underdogs. The film’s focus is on Deaf and Hard-of-Hearing people who were “left in the dark” as the last people to get accessible information about the terrorist attacks in New York City. Many topics began to make it into disabled filmmakers’ documentaries. Sins Invalid, a performance projects for artists with disabilities, especially BIPOC, queer, and gender-variant disabled artists, created a short documentary in 2013, Sins Invalid: An Unshamed Claim to Beauty, to show the world the power of authentic disabled person-led performances. And disabled people understand how to adapt their filmmaking into ways that work for them. Jennifer Brea shot much of her 2017 documentary Unrest from her bed. A mysterious fever left her with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or ME/CFS. Brea, 28 when she began filming, tracks her journey as she undergoes an identity change “from patient to advocate to storyteller.” She also connects with other people with ME/CFS worldwide through videochat technology, building a chronic illness community as she films.

By 2018, disabled documentary filmmakers were growing in numbers, so they came together to form Filmmakers with Disabilities-Documentary (FWD-Doc). FWD-Doc has created a number of resources for not just disabled documentary filmmakers, but the entire industry. FWD-Doc reported on film festivals’ accessibility and created A Toolkit for Inclusion and Accessibility: Changing the Narrative of Disability in Documentary Film. Jim LeBrecht, one of the founders of FWD-Doc and co-director of the Oscar-nominated 2020 documentary Crip Camp, says disabled documentary filmmakers come to projects with innate problem-solving skills: “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,” he wrote in 2018. LeBrecht said the goal for disabled filmmakers is “to tell our stories because we can do so from our own perspective, not one that is filtered through someone else's lens.”

With authenticity at the forefront of disability documentaries, major media players like PBS have come onboard to support disabled documentary filmmakers. The PBS American Masters series announced its Visibility, Inclusion and Accessibility (VIA) Initiative in 2023. The initiative led to a new digital series about forgotten disabled cultural icons called Renegades, which aired as part of U.S. Disability Employment Awareness Month in October 2024. Michael Kantor, Executive Producer of American Masters, said in 2023 that “there is a broad and diverse audience hungry for this content. Thanks to steadfast support from the Corporation for Public Broadcasting and other partners, we look forward to working closely with Day Al-Mohamed and Amanda Upson to expand and deepen our commitment to stories for, by, and about people with disabilities.” Each episode of Renegades was created by production teams of all disabled people, led by writer/director and series creator Day Al-Mohamed, who is a co-founder of FWD-Doc and serves as a Senior Policy Advisor in the U.S. federal government, and Series Producer Amanda Upson, who serves as a board member and served as acting Executive Director of FWD-Doc.

These digital documentaries will be on the American Masters website for at least seven years, according to Al-Mohamed.

I had the honor of discussing the Renegades series in September 2024 at the Kennedy Center in Washington, D. C., and the auditorium was packed with many disabled audience members, who spontaneously applauded often. At the reception afterward, I met dozens of the creative disabled people who put together the Renegades digital documentaries. I also learned about accessibility consultants who can help on set. Kiah Amara, founder of IndieVisible Entertainment, provides on-set accessibility guidance. The mission: “Production Accessibility works in service of all cast, crew, and creatives - whether Disability identifying or not - to ensure a space of ease conducive to crafting ground-breaking content and safe, sustainable careers.” Amara identifies as a disabled, queer, and nonbinary producer, activist, filmmaker, and accessibility specialist and helps productions negotiate the “access friction” that may arise from the ableism embedded in film production practices, or when a group of disabled people with opposing access needs are together to create. Julie Fukunaga, a neurodivergent, queer spoonie writer, said in 2023 that “Centering disabled voices in content creation and the tangled intersections between audience and artist in immersive art allows for generative, imaginative possibilities for disabled embodiment and storytelling.” In writing about the International Documentary Association’s Nonfiction Access Initiative (NAI), Fukunaga explained that “efforts to prioritize accessibility take ongoing work, a willingness to try and fail, and a wholehearted embracing of ‘friction’ when access needs are not being met.”

Props No More is aiming for both access for the audience and crew members and for disabled participants’ intersectional identities to be highlighted. Our production team is majority disabled people. The final film will be captioned by access artist and filmmaker Cheryl Green, who has multiple acquired disabilities, and audio described by the Social Audio Description Collective, which Green is a part of. Green sees captioning and audio descriptions as justice and equity issues. “It is access to information. Whether that’s the news or pure entertainment or something that’s informational or somethings that’s on a social issue. It’s about equity. It’s not just about meeting compliance. I love doing it and I love what it can bring to people and how it can include more people in media and in conversations,” Green said in 2019. Green added, “if you think about Audio Description at the time of writing it [the film], at the time of producing that film, chances are you’re going to think of something that’s going to enhance it.”

Props No More will also feature some of the filmmakers at Superfest 2024, which is a 30-year-old Disability Film Festival now produced by the Paul K. Longmore Institute on Disability at San Francisco State University and the San Francisco Disability Cultural Center (DCC). They say the mission of Superfest “is creating joyful and generative spaces for disability culture and creativity to thrive.” Although physically based in California, Superfest offers a virtual film festival as well, so people around the world can access the films remotely.

Disabled media creators are crafting more than just documentary content; they are showing the world their humor and telling scripted stories about their experiences. The Squeaky Wheel: Canada is a satirical news-format show based on American Steven Verdile’s satirical website, The Squeaky Wheel.  The creators of the Canadian show say it “pokes fun at the ableist society people with disabilities face every day.” Verdile, who is an executive producer of the show, says he looks “forward to seeing where this talented group of performers, writers and producers from the disability community takes us.”

Props No More tells the stories of disabled people who surmount the ableist barriers they face to create media. These stories have rarely been told from the perspectives of actual disabled people. Props No More aims to fill that gap.