Documenting Disability: The Importance of Disability Expertise

Unlike some marginalized groups, the filmmakers’ lens has been historically drawn to people with disabilities. However, “Disability has been disproportionately underrepresented at the same time as it has been excessively displayed,” as disability studies scholar Nicole Markotić points out.[1] Actors who play disabled characters increase their chances of an Oscar nomination. Mainstream documentaries frequently tackle disability issues, from disabled veterans returning from war to disabled athletes conquering impressive feats. And yet, films that actually represent disability by showing it as a site of discrimination, as part of the human experience, or as a category of diversity that enriches our world are few and far between.

The genre of documentary has been powerfully tied to disability, as the documentary historically served as a powerful tool in defining and categorizing disability within medicine.[2] In the introduction to Documentary and Disability, editors Catalin Brylla and Helen Hughes explain, “As long as the documentary genre engaged in such representations of reality, picking up on its role in medical definition, it tended towards the inhuman in its objectifying gaze at the disabled body.”[3] This relationship has been hard to shake.

Yet despite this historically fraught relationship, recent documentaries have emerged that attempt to heal these wounds. For the past five years as coordinator of Superfest Disability Film Festival, the longest running festival of its kind, I have been fortunate to witness the power that documentary films can have when they give voice to the everyday accurate and diverse experiences people with disabilities have. As one Superfest attendee expressed, “Film shares the poetry, challenges, barriers, artistry, and experiences of disabled people in a way no other medium can.” But to make this happen, our jury - comprised of 100% people with disabilities - still must sort through an abundance of documentaries that do not move the conversation forward. In doing so, a trend emerges: documentaries made by people with disabilities themselves are much more likely to be accepted to the festival, supporting the disability rights slogan of “Nothing About Us Without Us.”

This piece focuses on the genre of documentary to examine how disabled people as filmmakers are playing a lead role in shifting the conversation toward more accurate and productive representations of disability. Not unlike the freakshow, which offered some power to people with disabilities in spite of its obvious exploitation because once on stage, disabled people got the opportunity to talk back to the audience, a reclaiming of the genre of documentary by people with disabilities allows for a disability aesthetic to emerge and a talking back to the traditional genre of disability documentaries.[4]

The interventions of disabled documentarians exist in stark contrast to an abundance of unproductive disability documentaries.[5] The oldest trope of disability documentary reduces disability to a life of tragedy, deserving of pity. Sometimes these films are developed for an organization’s fundraising, others shed light on a medical impairment. These documentaries often end with a clear takeaway: disabled people – whether cured or mercy killed – need to put out of their misery.[6] Even if these films include footage that includes the voices of disabled people, typically these scenes and sandwiched between medical experts and burdened family members. These supposedly “unbiased experts” confirm the tragedy of the disabled person’s life without exploring the social explanations behind many of the problems people with disabilities face.

Another trope, that of the “Supercrip” or what disability activist Stella Young coined “Inspiration Porn,” seems at first better than the tragic trope. These films focus on successful and active people with disabilities accomplishing triumphant feats, such as amputees climbing mountains or blind people hiking across the Grand Canyon.[7] But disability studies scholar Paul Longmore explains how both tropes come from the same source:

These ‘real-life’ stories of striving and courage seem the antithesis of the bitter and self-pitying ‘cripples’ … but both stem from the same perception of the nature of disability: disability is primarily a problem of emotional coping, of personal acceptance. It is not a problem of social stigma and discrimination. It is not a matter of individuals overcoming not only the physical impairments of their own bodies, but more important, the emotional consequences of such impairments.[8]

These tropes of the tragic/pitiful and the supercrip/inspiration porn represent the most common pitfalls of disability documentaries. 

But fortunately, a new trope emerged starting in the 1990s, which disability scholars Sharon Snyder and David Mitchell call “The New Disability Documentary Cinema.” These disability documentaries “[strive], first and foremost, to make an ordinary life with disability imaginable and even palatable to those of us who have inherited a bankrupt tradition of disability imagery.” Disability is not pathologized but rather a site of discrimination, an identity category that serves as the basis for community, and a pervasive aspect of our human existence.

Snyder and Mitchell point to films like Vital Signs (1995) and When Billy Broke His Head (1995) to illustrate this shift. While these films are made by people with disabilities, Snyder and Mitchell’s work does not dive into the role of the disabled documentarian in making this shift possible, though they acknowledge the importance of disabled people telling their own stories.

In contrast to the problematic notion that people with disabilities contribute to society in spite of disability, the experience of navigating a discriminatory society every day provides inspiration and creativity that filmmakers with disabilities are bringing to documentary filmmaking. Disability serves as a “creative and generative force,”[9] not just in bringing better content to the genre of disability documentaries, but in ways that are valuable for cinema more broadly.

Three recent films screened at Superfest Disability Film Festival – Once Again (2014), Cerebral Game (2015), and Deej (2017) – exemplify the disability-turn that disabled filmmakers bring to the new disability documentary cinema.

In Once Again, director John Spottswood Moore sheds light on life with obsessive compulsive disorder (OCD) through a firsthand lookback at his own childhood. Alternating between scenes of his own animation combined with his narration of childhood memories and footage from his family’s home videos, he manages to take the stigma out of OCD without denying the challenges that OCD posed in his life.

The film opens with home video footage featuring a young Moore in front of the camera. He asks his dad, who holds the camera, “Can I look in it?” Moore’s father urges him to stay in the shot, “You’re the star of the show now, you have to tell us a story,” leading into Moore’s first line of narration. This opening makes for a powerful start, not just because of the playfulness that we obviously know Moore is  now a filmmaker controlling the camera and telling the story, as his father has urged him to. From the outset, this scene reminds us of the gaze people with disabilities live under, both in day to day life and as documentary subject with the traditional restriction of nondisabled documentarian/disabled subject. In this film, Moore will not only tell the story on screen but also behind the lens, and as a result, the gaze gets turned on the viewer as we gently ask ourselves: am I ableist?

Later in the film, we hear Moore’s mother’s retelling her understanding of Moore’s OCD, joined a beat later by Moore’s animation paired with his own explanation of how he experienced these moments. Whereas in more traditional disability documentaries, the parents’ perspective is held dominant as expert, when the disabled filmmaker takes control of their own story, they get the final word.  Moore doesn’t deny the impairment’s existence nor its negative impact on his life, as this was clearly part of his experience. However, Moore wants us to recognize that part of the challenge of life with OCD is a lack of understanding and the stigma that comes with the inability to control one’s impulses. There’s an awareness of what the mainstream assumptions are about the disability that the documentarian with a disability nods too, here by using his mother’s narrative, which the neurotypical viewer is likely to connect with and hold similar beliefs to. But when Moore gets to talk back, he encourages the viewer to work past these limited assumptions through the artistry of disability as a creative force, in this case, achieved through his own drawings, which make life with OCD less distant and more intelligible. 

Turning to a second example, in contrast to the overcomer/supercrip documentaries where sports is a common theme, Reid Davenport’s Cerebral Game shows that sports documentaries can hold a better place for disability. Like Moore, Davenport too pulls in documentary footage from his younger years playing baseball, despite the challenges his cerebral palsy poses to the athletic demands of the game. Despite a deep love for baseball and the community that he found in the sport, Davenport’s narration attempts to grapple with the fact that he can’t play the sport competitively, comparing this fraught relationship to his current passion for filmmaking, despite its sometimes-physical demands. 

This film is not alone in its critique of the overcomer narrative; Superfest previously screened a documentary about a limbless mountaineer attempting to climb the Matterhorn, who in a surprising twist (spoiler alert), concludes with the realization that he will not successfully make it up the mountain. As the lights came up, our emcee Nina G, a person with a disability and stand-up comedian, remarked, “Wow! That was so refreshing to see a disabled person fail!” By sharing his story and explaining why he’s drawn to baseball in spite of his physical limitations, Davenport gets to define his relationship to the sport in contrast to previous moments where he was “included” or upheld as inspiration grounded in pity. After such an abundance of inspiration porn documentaries, perhaps a trend is called for that celebrates disability failure.

The film concludes showing a shaking Davenport filming the baseball field, presumably gathering some of the B-Roll that has appeared earlier in the film: shaky shots of the baseball diamond, for example. Davenport narrates, “I sometimes wish I could accept my limitations. Maybe it would be better to not get too close so I could spare myself the pain. I’m a filmmaker who can’t shoot a steady shot. I’m a baseball fan who can’t play. But it’s worth it for those moments when I make it onto the field.” Davenport is playing with his viewer, similar to Moore in Once Again, by exposing ableist assumptions without ever explicitly calling these assumptions out in an overly pedantic way. These final words respond to the likely anxiety nondisabled viewers experience seeing the unsteadiness of some of Davenport’s shots and pose a challenge: why can’t we see more unsteady shots in cinema? Despite his claim that he’s a filmmaker “who can’t shoot a steady shot,” the film has already shown us a disability-workaround in the usage of archival footage as well as a series of stills throughout: steady shots either gathered by tripod or by placing the camera on the ground, reminding us that of course, a filmmaker need not get a steady shot on their own to count as a filmmaker. One could even say that the tripod is the filmmaker’s “assistive technology,” helping push us to recognize that while we all use technology to extend our bodies’ capabilities, some devices are stigmatized while others are praised.   

When I had an opportunity to interview Davenport, he felt grateful for how most of his films have been received to date, but he also shared that occasionally, he still will have meet audience members who say “You are such an inspiration,” reducing his progress by putting him back in the disability “overcomer” documentary box. Progress is being made with the new disability documentary, but there will be efforts to reduce its gains.  

Turning to a third example, Deej demonstrates how disability expertise can be brought to documenting disability even if the primary filmmaker is not disabled. Shot over six years in the American Midwest and a feature film (unlike Cerebral Game and Once Again), Deej follows DJ Savarese as he transitions from high school to college and becomes Oberlin’s first non-speaking autistic student. Savarese strives to not just share his own experience, but to promote greater inclusion for autistics widely through the film, achieved in part through being involved in the filmmaking process itself. The film’s promotional materials state: “In this first-of-its kind collaboration between a veteran filmmaker and a nonspeaking autistic, Robert Rooy and DJ share editorial control as they navigate the challenges of representing autism. Deej, the result of this often-difficult partnership, is a story told largely from the inside, by DJ -- not by his parents or autism experts or even the camera. At its core, Deej reflects the level of participation that disability rights advocates insist upon: ‘Nothing about us without us.’”

The viewer watches, for example, as Savarese takes a trip to Washington D.C. As he navigates the city, Savarese’s neutral face does not show enjoyment the way neurotypicals expect, so the neurotypical viewer is likely to question whether Savarese is enjoying his trip. However, due to the unique filmmaking role Savarese has carved out for himself, he gets to share his experience. With a synthetic narrator voicing his words as he recalls this moment later, he shares, “I have to work so hard to maintain reasonable self in control that I can’t afford to lose myself in the interesting sounds and beckoning sights.” While his face may suggest distance or a disconnect from the surrounding environment, his words challenge these assumptions and explain that rather, he is deeply connected. 

Another scene shows Savarese as he visits the Lincoln Memorial. Visually, the viewer watches Savarese, whose face appears neutral, only slightly more expressive as he has a moment of stimming. Again, the narration complicates the visual. We learn the stimming is not a sign of distress, despite how it likely reads to people nearby unfamiliar with autism. Savarese explains, “I greet the Lincoln Memorial Free. I look at holy, loving Lincoln and give myself the courage I need to free my people. I love this folding-up-fear memorial. I hold my head high in greatness.” Not only is he deeply enjoying the visit, but he is able to share his political reflections through this important addition of the final voice-over.

Interspersed throughout the film, Savarese’s poetry, matched with animation by artist Em Cooper, interjects his perspective into the documentary. Savarese explains, “I have always thought that poetry is autistic: it revels in patterned sound, maybe because I spent so many years hearing it without comprehension.” Most documentary films to date on autism isolate between behavior therapists, parents, and perhaps the occasional quotation from the autistic subject. However, in Deej, Savarese gets the final word, or at least half the time because as Savarese reminded the audience at our film festival screening, “50% editorial control is still just 50%.”

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We need disabled filmmakers to propel the new documentary cinema forward, challenging assumptions of disability by shedding light on the diversity of experiences people with disabilities encounter.  This is not to say that we can “experience the disability” through the documentary. To say that a nondisabled viewer will understand what it’s like to be Savarese, Moore, or Davenport after watching these films would be a mistake . However, they do gently and tactfully help nondisabled viewers recognize that the assumptions we bring to the disability documentary, developed in part from the history of disability documentaries told about disabled people but not by them, are severely limited. And this lesson is best taught not just through disability content but also through disability as a creative force in filmmaking that inverts the relationship of the documentary gaze and poses challenges to what cinema is and might be. We need more films told through disability expertise: the perspective of gained by navigating a discriminatory and inaccessible society every day.  

Recent developments in technology has increased opportunities for marginalized people, including people with disabilities, to tell their own stories. This means that there is no excuse for older documentary tropes still dominating cinema, as there are so many more rich, important stories to tell about disability beyond those that seek to portray people with disabilities with pity, as “other,” or on an inspiration pedestal. Moore, Davenport, and Savarese all bring a new perspective forward for disability though holding many other privileges, as white, well-educated men that helps allow them to lead this “talking back.” We of course need the new disability documentary’s expansion to include more intersectional perspectives as well.

Documentarian James LeBrecht writes, “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 to 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.”[10] From the reactions I witnessed to the films by Moore, Davenport, and Savarese at Superfest, I share LeBrecht’s belief; we are ready for more documentaries made by people with disabilities for people with disabilities, and may they make more nondisabled people uncomfortable, in productive, enlightening ways, as a result.


WORKS CITED

[1] Nicole Markotic, “Punching Up the Story: Disability and Film,” Canadian Journal of Film Studies, (17:1, 2008), 7.

[2] Martin Pernick

[3] Catalin Brylla and Helen Hughes, “Introduction: The Bricolage of Documentary and Disability” in Documentary and Disability, Catalin Brylla and Helen Hughes, Eds. (Palgrave Macmillan 2017), 2.

[4] Rachel Adams, Sideshow U.S.A., (University of Chicago: 2001).

Robert Bodgdan, Freakshow: Presenting Human Oddities for Amusement and Profit, (University of Chicago, 1990).

[5] While Rosemarie Garland-Thomson’s essay focuses on photography rather than cinema, the tropes laid out here derive from Thomson.  Rosemarie Garland-Thomson, "Seeing the Disabled: Visual Rhetorics of Disability in Popular Photography," in The New Disability History: American Perspectives, Eds. Paul K. Longmore and Lauri Umansky, (NYU Press, 2001), 335-374.

[6] Anne Finger, “Helen and Frida.” In Staring Back: The Disability Experience from the Inside Out, ed. Kenny Fries (New York: Plume Books, 1997), 255-263.

[7] Stella Young, “I’m Not Your Inspiration Thank You Very Much,” Tedx Talk Sydney, April 2014: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

[8] Paul Longmore, Why I Burned My Book and Other Essays on Disability, (Temple Press: 2003), 139.

[9] This language is frequently used in our organizational materials at the Paul K. Longmore Institute on Disability: longmoreinstitute.sfsu.edu

[10] James LeBrecht, “A Place at the Table: Doc Filmmakers with Disabilities on Building Careers and Disproving Stereotypes,” Documentary Magazine (Winter 2018), https://www.documentary.org/feature/place-table-doc-filmmakers-disabilities-building-careers-and-disproving-stereotypes.


Author bio

Emily Beitiks received a Ph.D. in American Studies with a focus in Disability Studies at the University of Minnesota. In her current position as Associate Director of the Paul Longmore Institute on Disability at San Francisco State University and coordinator of Superfest Disability Film Festival, she works as a scholar-activist of disability to showcase how disabled people bring unique value that can benefit us all.