From Film Quarterly Dossier: The New Disability Media, Winter 2022
By Lawrence Carter-Long
Traditionally, disability as portrayed and presented in cinema has had an almost exclusively outside-looking-in aspect whereby predominantly nondisabled filmmakers give viewers a peek inside a mysterious way of being that (most) viewers—their intended, nondisabled audiences—had been blessed to live outside of (or so it was assumed).
This view was seldom expressed overtly, because it didn’t need to be. After all, it mirrored the dominant worldview. Whether these were Werner Herzog’s early documentaries or Frederick Wiseman’s Titicut Follies (1967), disability has almost always been a foreign country that nondisabled tourists—er, filmmakers—would visit from time to time, whenever it intrigued or suited them. But in general, unless the film was made by an avant-garde outlier like Stephen Dwoskin, the point of view projected out to the rest of the world rarely encompassed the work or life of a disabled filmmaker decoding lived experience or the understanding born from that experience. Frankly, disabled people didn’t have the training, the connections, or the opportunity.
By contrast, today’s New Wave of Disability Cinema starts from the inside and shines outward. A different focus and POV with—most important—different intentions. The current crop of films seems less concerned with contorting their stories to fit dominant nondisabled expectations than with confronting assumptions, calling out injustices, and ultimately demanding change, however uncomfortable that process may be. Replacing poster-child appeals for inclusion with proclamations of purpose, they deliver powerful statements that say, in effect: “We’ve always been here. This is our truth. And we’re tired of being ignored.”
A sense of outsidership at times permeates these works, but this perspective liberates more than it limits. Often uniquely raw and personal, they reflect an understanding, even an embrace, of how—in times like these—those qualities also make them inherently political. Unencumbered by the need to be accepted by a dominant, nondisabled status quo, these new works offer an artistic means to shake it up. They begin, rather than ending, by speaking truth to power—by consciously and deliberately upending the systems, structures, and thinking that support the status quo, subverting the ableism lounging comfortably clueless at its core, through agency and observation. One frame at a time.
Not Going Quietly, Nicholas Bruckman’s 2021 feature documentary, chronicles the journey of disabled activist Ady Barkan as he embarks on a national community-based campaign to reform health care. 1 A Romanian Jewish immigrant lawyer with a young family, Ady Barkan rose to celebrity status in the health-care debate, but that was neither expected nor particularly desired. The decision to go public with his advocacy fight occurred after Barkan’s insurance company refused to pay for a breathing machine, a device that the activist—who had been diagnosed with amyotrophic lateral sclerosis (ALS), a progressive neurological disease that attacks the nerve cells that control voluntary muscle movements like chewing, walking, and talking—needed to stay alive, as his medical team testified. But the essential device was deemed “experimental,” a common ruse of these companies, and, as such, it was not approved by his insurance provider.
Barkan later quipped that jousting with his insurance company was even worse than knowing ALS would one day kill him. There was a dark truth to his gallows humor. Since so many others have health-care hurdles just as bizarre and byzantine as his own—assuming they’re one of the fortunate who have health insurance at all—the film chronicles Barkan’s fight as a proxy for all of them, as he takes his case to elected officials and the American public. When then-president Donald Trump proposes tax cuts that would endanger Medicare and other social safety nets that, in no small part, keep Barkan and millions of others independent, if not alive, the stakes couldn’t have been higher—both more personally political and more politically personal. As the film unfolds, it becomes almost impossible to separate the two, which is as it should be. Some don’t have that luxury.
At a rally that sought to sway potential swing-vote senator Jeff Flake to oppose Trump’s proposed tax bill, Barkan met like-minded political strategist Liz Jaff. She discovered that she and Barkan were both on the same flight as Flake and proceeded to film Barkan making his case to Flake. Their video went viral on social media, a trajectory traced within the documentary.
In addition to his political advocacy on- and off-screen (the premise for the documentary), Barkan shares intimate moments—from getting assistance showering to eventually losing the ability to speak without the aid of an automated speech-generating device, all due to ALS. 2 These are moments that others would probably prefer to keep private, profoundly personal situations they keep to themselves or share only with loved ones, and even then not because they want to, but because they often have no other choice.
ALS “paralyzed my body and made my life infinitely harder,” Barkan told audiences during a virtual panel discussion following a closing-night screening of Not Going Quietly at the ReelAbilities Film Festival: New York. 3 “At the same time, ALS, and my life because of it, has pushed me deeper into the collective struggle for a more just and equitable democracy. Personal stories have the power to move people in a way little else can, and being open and transparent about mine has allowed me to transcend my dying body and help bring more people into the movement for justice. So, it wasn’t a hard decision to be candid in the film, though I never could have imagined when … first approached with the idea that the movie would become what it is today.”
Barkan concluded by confessing: “Finally, I must add, this movie and its candid look into my life is also, for me at least, meant as a record for my children…. I want my kids, now just one and four, to know who I am, even if I am not around anymore.” Turning conventional wisdom on its head, Barkan subverted the assumption that disability advocates do what they do despite their disabilities. What his story so powerfully illustrates is that, when faced with situations like the one that the film chronicles, people frequently do what they do because of their disabilities—not despite them. A case could be made, in fact, that in genuine life-or-death situations like Barkan’s, the reality of living with a disability in a capitalist society becomes the catalyst for heroic action. Not Going Quietly serves as both testimony and before-the-fact testament to Ady’s life and life’s work to get legislation passed to fully fund home care for disabled people. He knows it, of course, and by the end the audience knows it too: that’s precisely the point.
A similar catalyst drove filmmaker Jason DaSilva’s Emmy-winning autobiographical documentary When I Walk (2013), in which DaSilva chronicles the seven years following his own multiple sclerosis diagnosis. In the sequel, When We Walk (2019), DaSilva continues his disability journey, this time documenting the impact of another life-altering event—divorce—as he attempts to navigate how to maintain regular contact with his young son following his ex-wife’s move with their child from New York City to Austin, Texas.
During a panel discussion with other disabled filmmakers, DaSilva gave a preview of When We Walk, which was then still in production: “I really look deeply into [how] Medicaid works throughout all fifty states and really find out that there’s no way that a person could go from one state to another state easily on Medicaid. That’s one big takeaway I’ve learned. What I’m trying to do is really get at this at a policy level to take my findings and hopefully make some changes.” 4 In an excerpt from the sequel that was first showcased as a stand-alone New York Times Op-Doc, DaSilva discovers, as do his viewers, that the harsh reality of the US Medicaid system differs, often greatly, from one state to the next. 5
“I want to be around my son,” DaSilva says in the film, “but I need to find the same care…. I start doing research on state rankings for their Medicaid programs…. While New York isn’t in the top fifteen overall, it’s number one specifically for reaching people with disabilities in need. While Texas is dead last, I attempt to get the same health care I get in New York. In Texas.”
During the course of his investigation, DaSilva and his audience discover that if someone residing in Texas requires around-the-clock care, Medicaid generally places that person in a nursing facility or a nursing home rather than providing the kind of in-home care offered in New York State. For DaSilva, being the father he wants to be for his young son would require admitting himself to a nursing home and giving up the support services he and his care team have carefully constructed to enable him to continue living, parenting, and working independently as a filmmaker.
Eventually, DaSilva moves to Texas temporarily to test the waters. The audience witnesses what happens when he checks himself into a nursing home to find out firsthand what life would be like with “no work, no independence, no freedom,” in drastically different circumstances than those to which he’s been accustomed. The dramatic tension between living life on one’s own terms and the restrictions imposed by limited options, underfunded supports and services, and bad public policy is the engine that propels Jason, who in turn offers an embodied political performance that dramatically makes his point. It’s a reflexive, first-person story that gains power in the telling, in part due to the unique blend of nuance, agency, humor, and context that DaSilva brings to it, without resorting to sentimentality or pathos. There’s no need to pile it on when the reality is complicated and stark enough as shown, unvarnished.
Throughout the film, DaSilva speaks either directly to the camera or via voice-over, taking a confessional tone as he works through these questions and the situations as they emerge. The audience is in the passenger seat the entire time, as DaSilva’s joy, frustrations, and fears become less abstract while they simultaneously become more pressing. His is a cinematic sleight-of-hand, hooking the audience by detailing one set of circumstances in service to the bigger picture.
Julie Wyman’s Untitled Dwarfism Project was previewed at the Public History Project’s “Dismantling Eugenics” event in fall 2021, held at the American Museum of Natural History. Wyman seeks answers about her place in the world at the same time that BioMarin Pharmaceutical Inc. announces a new drug, which it calls VOXZOGO (generically called vosoritide), that promises to make little people taller. At first glance, such a development might seem benign, or even positive, but Wyman doesn’t stop there. Her personal experience and unique perspective as a person of small stature compel the filmmaker to dig deeper and shine light on the necessary nuances that, in the end, enhance and embolden her work.
“At what cost?” Wyman dares to ask. This question and the others that Wyman poses aren’t exactly new. What’s changed—and significant—is that Wyman and other “outsiders” like her are the ones increasingly calling the shots. More importantly, they’re not only deciding what questions to ask, but also recording, editing, and shaping how the answers they receive are presented. Any filmmaker will tell you that’s where things get interesting, and messy. And it makes all the difference.
In 1957, actor Billy Barty, himself short-statured due to cartilage-hair hypoplasia dwarfism, urged other little people to join him for an informal get-together in Reno, Nevada. Barty’s original gathering of twenty-one people eventually evolved into the organization Little People of America (LPA), which as of 2019 had grown to more than 8,161 members and seventy local chapters that meet regularly, in addition to an annual weeklong conference. LPA defines dwarfism as “a medical or genetic condition that usually results in an adult height of 4’10” or shorter, among both men and women.” Is Wyman—who stands five feet tall but shares many of the same physical characteristics of little people with regard to proportion, height, and limb length, even without a diagnosis—part of the club? Would she even be welcome? To her credit, Wyman takes these questions and others directly into the epicenter of those most affected: the attendees at LPA’s annual convention. The debate among LPA’s membership is intensified when manufacturers of the drug offer to sponsor the event.
What does it mean when medicine marketed as a help poses an existential threat to those it claims to serve? Is eradication actually the point? Deep down, has it always been the point? With lack of access, inequity, and ableism so common, dominant, and pervasive, it may be that eradicating those whose very existence is evidence of these injustices has become preferable to correcting the imbalance, even if the eradication of entire cultures and communities would mean losing their intangible, invaluable wisdom and purpose.
Wyman’s film forces her audience to consider these questions firsthand and unfiltered, from more than one person’s POV. She musters revelations that echo, amplify, and pile up, revealing experiences unique and yet also far too common—for those who experience them. The film shares what it feels like to be chased down the street by people of average height brandishing cameras, or regularly being called an Oompa Loompa, or never finding pants that fit without hiring a tailor. What about the pressure to fit in, the desire to belong, and the exhaustion of navigating a world (or a kitchen) that wasn’t built with you in mind?
Historically, documentary films about disability have always been more focused on how the world perceives disabled people (a category in which I proudly include myself) than on how disabled people experience the world. The reasons why are as simple as they are infuriating: until recently, most disabled people haven’t had the power, opportunity, or agency to flip this dynamic. POV, context, and intention play critical roles in upending the comfortably ableist status quo. The New Wave of Disability Cinema not only subverts the standard, but also redefines it, in sharp contrast to what has long been the norm by either diabolical design or lazy default.
Illustrating this point, and in defiant contrast to the traditional grainy black-and-white images of disabled people commonly displayed in medical textbooks, Wyman’s documentary in progress features a procession of little people, all staring directly into the camera. Eyes wide open, no longer hidden behind black bars, they dare audiences to interrogate their own assumptions and, if they aren’t willing to change them, to at the very least pay close attention and admit they exist.
In all these films, the added depth made possible by lived experience adds essential context and sense of urgency to the persistent but largely unanswered question, How can those who live in the margins—due to the discrimination, stigma, and limited opportunities that are the norm within ableist ecosystems—claim their place in society?
This question is made all the more poignant when factoring in the just-as-common flip side of unwelcome attention, the polar opposite of being stared at but never really seen: invisibility. Being visibly “different” has its undeniable downsides, but even a negative reaction can affirm that you exist; it may even provoke or compel corrective action, as it did with Barkan. But when there’s nothing to respond to, what then? The lived experience of disability, parallel to the hackneyed “If a tree falls in the forest” thought experiment, could easily be phrased as: “If you go to the grocery story but no one says hello, were you ever really there?”
In an ableist world, the experience of having a visible disability frequently ping-pongs its members between these unwelcome extremes of unwanted attention and invisibility with little respite, forcing them to operate outside the margins in peculiar yet strangely specific ways nondisabled people rarely experience. Within these parameters, the nondisabled get to enjoy the quiet calm that requires no extra effort, the passive privilege of simply fitting in by default, the luxury of going about your business without the ever-present threat of the next barrier, obstacle, or attitude that suddenly interrupts your plans, your day, your life.
It was one such interruption that sparked Reid Davenport’s remarkable I Didn’t See You There (2022), which to date has earned top honors at the Sundance Film Festival and the Grand Jury Award at the Full Frame Documentary Film Festival.
No stranger to making movies about access, inequality, and identity, Davenport—who was included in the DOC NYC festival’s “40 Filmmakers under 40” in 2020—wanted to try something different with this latest project. Inaccessibly designed cameras had previously made it impossible for him to shoot footage himself. Advances in technology changed that. Feeling restless after being cooped up and away from family as a result of the COVID-19 pandemic, Davenport was eager to spread his wings and play.
“It started with the aesthetics of it. I wanted to make a film that I shot from my wheelchair,” Davenport told Realscreen. “I want to show how beautiful it is to ride around the city in a wheelchair. And then the circus tent went up.” 6
Over the course of a few months, the circus tent both beckoned and repelled, enticed and alienated. For Davenport—whose personal experiences of being a filmmaker with cerebral palsy have been combined with being an active participant in disability communities and disability studies—the tent became a constant reminder of the complicated and often exploitative history of the freak show. It is a history informed, in part, by Davenport’s having grown up in the hometown of one of the circus world’s most notorious hucksters, P.T. Barnum.
Since there was no escaping the tent and its associations, Davenport did what independent filmmakers have always done when faced with budget restrictions or unexpected changes in the weather or lighting, or when faced with an uncooperative subject: adjust, adapt, and carry on. Turn aggravation into opportunity. With a lifetime of experience behind them, living in a world that wasn’t built with people like them in mind, disabled filmmakers are probably more practiced at this than most—and not just when filming, but in life too. And it serves the project well.
Ever-present but never completely in the frame like DaSilva or Barkan, Davenport obliquely turns the camera on himself. Shot only in shadowy silhouette or from the side, partially out of frame—a chin here, an eye or hand there, his feet making a cameo—he obscures the obvious to go deeper, and bring submerged truths to the surface. The result is something audiences don’t often see: a firsthand depiction of life in the margins (and in a wheelchair, no less). Again, rather than avoiding the difficult questions, Davenport asks them—of himself and of his audience.
“It wasn’t so much a cinematic consideration as a statement that I constantly see in documentary films and in the media: disabled people are seen but not heard,” he said in an interview with KQED. “I wanted to completely lift that on its head, and try to invite people into an approximation of my experience.” 7
Davenport weaves visual abstraction into his personal, political observations, producing artful meditations and dreamlike cinematic expositions transmitted from the limbo located somewhere between agency and anonymity, perception and presence—all propelled by a slow, steady undercurrent of frustration if not fury bubbling barely beneath the surface. He’s too polite to curse out clueless offenders in public, but when Davenport does finally detonate an extended, cathartic f-bomb, out of frame but perhaps not entirely out of earshot after showcasing a series of microaggressions, obstacles, and other annoyances, the audience’s solidarity is as well-earned as it is perfectly timed.
Davenport and his team turn the film’s visual and sonic abstractions into a complex celluloid tapestry, blending the expressionistic imagery that he shot with his handheld camera with a soundscape highlighting movement and locomotion. Even when images are obscured, the mic is always on, exaggerating what viewers cannot see and often can only partially hear. But Davenport doesn’t stop there. He bakes in access. Specifically, the film delivers a welcome cacophony of consideration, evidenced by open captions and descriptive audio (AD), adding depth and texture to his experiences—and by extension to his film—by adeptly punctuating issues rarely acknowledged by anyone other than those who routinely face them. These deliberate creative decisions expand the scope and status of the broadcast to anyone paying attention: “The cinematic rules have changed.”
Despite the fact that disabled people existed long before stairs and institutions, and long before civil rights laws were passed, to date only a precious few films understand and seek to translate the disability experience in ways that cinematically embrace the art form in the service of both the personal and political. Given the cultural and political realities for disability communities, such a combination is increasingly essential to greater understanding, if not survival.
The films that constitute the Next Wave of Disability Cinema similarly subvert the dominant ableist POV, in a manner akin to Laura Mulvey’s groundbreaking insights about the male gaze. It’s a gaze that historically has perceived disability as an unfortunate spectacle. Now, by asserting their own authority within a layered understanding born of experiences both personal and political, disabled filmmakers are ushering in a new cinematic reality in which nothing is denied or erased for the comfort of nondisabled audiences.
This inclusive aesthetic reckoning represents an overdue evolution that, if embraced, can liberate both audiences and filmmakers by redefining what stories are told, who gets to tell them, and how they are told—this includes budget items for accessibility essentials like captions and audio description that anticipate (and welcome) blind and Deaf artists, as well as audiences. Life on the margins equips its residents with a keen sense of observation—a skill set developed by necessity, one that allows them to navigate the dangers faced outside the ebb and flow of what has been considered “normal.” It is long past time for these skills to be unleashed in the service of disabled artists who—as a community, culture, and identity—have been too long denied agency by limited imaginations and an ableist gaze.
- Mark Duplass, Jay Duplass, and Bradley Whitford were executive producers of the film, along with producer Amanda Roddy.
- Barkan’s nonprofit advocacy organization, “Be a Hero,” is dedicated to securing funds for home care for people with disabilities. See https://beaherofund.com/.
- Quotations are from the author’s interview with Barkan and the creative team behind Not Going Quietly, conducted at the ReelAbilities festival in May 2021.
- This text is an excerpt from a panel discussion moderated by the author in September 2018.
- Jason DaSilva, “The Disability Trap,” New York Times, July 24, 2018, http://www.nytimes.com/2018/07/24/opinion/disability-trap-state-medicaid.html.
- Justin Anderson, “New Visions in Documentary: Reid Davenport, Julie Ha & Eugene Yi,” Realscreen, June 21, 2022, https://realscreen.com/2022/06/21/new-voices-new-visions-in-documentary-reid-davenport-julie-ha-eugene-yi/.
- Michael Fox, “Oakland-Made Documentary ‘I Didn’t See You There’ Puts Disability in a Political Lens,” KQED Arts, January 20, 2022, http://www.kqed.org/arts/13908383/i-didnt-see-you-there-documentary-sundance-oakland-disability.
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