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.

Notes

1. Mark Duplass, Jay Duplass, and Bradley Whitford were executive producers of the film, along with producer Amanda Roddy.
2. Barkan’s nonprofit advocacy organization, “Be a Hero,” is dedicated to securing funds for home care for people with disabilities. See https://beaherofund.com/.
3. 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.
4. This text is an excerpt from a panel discussion moderated by the author in September 2018.
5. Jason DaSilva, “The Disability Trap,” New York Times, July 24, 2018, http://www.nytimes.com/2018/07/24/opinion/disability-trap-state-medicaid.html.
6. 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/.
7. 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.

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media, Winter 2022

By Arseli Dokumaci

Vision Portraits (2019) is the most recent documentary feature by award-winning filmmaker Rodney Evans, whose previous works include Brother to Brother (2004), which won the Special Jury Prize in Drama at the Sundance Film Festival and received multiple Independent Spirit Award nominations. Evans received the Frameline Award for LGTBQ+ representation in 2019 and was awarded one of the Disability Future Fellowships by the Ford and Mellon Foundations in 2020. In his films and videos, Evans has long been dealing with issues of marginalization based on race, sexuality, and class. In Vision Portraits, he goes on to explore how disability is entangled in this intersectional web.

Vision Portraits follows the stories of four artists who are either born sighted or, like choreographer and dancer Kayla Hamilton, partially sighted, as they negotiate their way out of sightedness into blindness. There is no sudden exit and entry between the two worlds, however, regardless of how suddenly you may lose your sight. You cannot “whoosh” your way out of one and enter the other. Rather, becoming blind, Vision Portraits tells its audience, is a process, a negotiation—one that is far from being linear, straightforward, or intuitive, and one that can, in some cases, be excruciatingly slow. In fact, this is one of the many strengths of the documentary: the way it depicts becoming blind as a process in all its complexity, multiplicity, and differential durationality, all of which are matched with visuals that correspond to these multiplicities, ambiguities, and uncertainties.

Depending on where they are in their process, each artist in Vision Portraits has their own story of becoming or having become blind. By “becoming blind,” I do not mean how artists may have become biologically blind (though those stories are shared too) but rather how they are becoming or have become blind in an existential and phenomenological sense. I think of “becoming blind” in relation to what critical disability and race studies scholar Nirmala Erevelles calls “disability as becoming,” a process by which “impairment is no longer merely a biological fact, but is, instead, a manner of becoming-in-the-world that reorganizes lived space and time as well as the social relations between the self and other bodies.” ¹

Correspondingly, “becoming blind” denotes the process of figuring one’s way out—literally and metaphorically—in a world dominated by sightedness. It references a process of carving out a place of livability and eventually (against all odds) “dwelling,” to use Eliza Chandler’s term, in blindness. ² As photographer John Dugdale—one of the four artists portrayed in the film—puts it after having lived in blindness for thirty-five years: “It’s fun to live in this bliss.” It is then that Evans, not only the film’s director but also one of the artists portrayed, intervenes to ask: How do you arrive at that point where you can call blindness living in bliss?

From Dealing with to Dwelling in Blindness

In the film, Evans mentions twice that it was his “own fears about being able to continue as a [blind] filmmaker” that drove him to make Vision Portraits. What scares him most, he says, is what he turns into a film. Crucially, however, Evans does not make just any film about blindness; rather, he makes a film that documents the stories of four artists who themselves have also sought to deal with their blindness through their art. Put differently, it is not only Evans but also dancer Kayla Hamilton, writer Ryan Knighton, and photographer John Dugdale who turn to, and resort to, their own artistic medium in order to figure their way into becoming blind. Their stories are depicted visually through Evans’s thoughtful stylistic choices about which images he incorporates (actual shots, collages of old footage, footage from Evans’s previous films, medical imagery, and the like), at times using distortions, filters, and other image modifications such as blurs and pixelizations, to render a sense of the visual experiences of each of his characters as their vision deteriorates. ³

When he became blind, Dugdale recalls, he “was starting to feel invisible.” Because he couldn’t see people, he felt they couldn’t see him either, he explains, while on-screen photos of his in which ghostly figures appear provide a powerful visual expression of his words. “And I used these [pictures],” Dugdale continues, “to heal myself. Proving to myself that I could still function in a way that was not expected of a blind person.” In fact, after the stroke that marks his entry into blindness, he continues to take pictures with fierce creativity, and, as with many other disabled people, he creates all sorts of ingenious affordances along the way, such as using chopsticks to measure distance from the camera. His studio, where he and his assistants work in concert to orchestrate his photographic vision, becomes a vivid illustration of what disability justice activist Mia Mingus calls “access intimacy.” ⁴

Through his team and their collectively improvised affordances, Evans shows how Dugdale becomes a remarkable blind photographer against all odds. In a way, Dugdale’s tender and beautiful photos look back at a world privileging sightedness—to echo feminist disability scholar Rosemarie Garland-Thomson’s work on staring. ⁵ Dugdale offers a thought-provoking, indeed visionary, explanation of his work, as if he were saying: “There are many ways of seeing, and not all of them are done with eyes. Here, these photos are how I see you without using my eyes.”

Revisiting the time when she temporarily lost most of her vision, Kayla Hamilton recalls how she came to understand that “there was some healing to be done through this process.” She then asked herself, “How can I use my art form as a way of sharing what it is that I’m experiencing?” This inner reflection eventually led to the creation of her piece Nearly Sighted, a dance performance into which she explicitly and deliberately integrates blindness as an aesthetic element. Similar to the way Dugdale, through his photos, “stares back” at the world that denies his capability to see, Hamilton, in dancing with her eyes closed, rebuffs the sanctions of the same ableist world that expects the dancers onstage to be in time and in sync with one another. “What—who is that for?” she poignantly asks. “Who am I pretending for?” In Nearly Sighted, the ones pretending are the dancers—all Black female choreographers—and the audience members who choose to wear brightly colored eye patches, each painted with different shiny colors, covering their left eyes, thus experiencing Hamilton’s work as she created it.

Ryan Knighton, too, violates the temptation to pass that is imposed by able-bodiedness. Having burdened himself with the taxing work of trying to continually fit in by passing as sighted, Knighton at some point realizes the futility of his efforts, explaining: “Blindness is not something I should avoid [but] … something I should look from.” At that point, blindness materializes as a viewpoint in its own right, rooted in the authority of his personal, experiential knowledge. Knighton begins to write about his experiences as a blind person—a turning point in his life that results in the publication of his memoir, Cockeyed: A Memoir of Blindness. In Knighton’s autobiographical writings and performances, it is not the ableist world but Knighton himself who controls the narrative and sets the terms of the encounter. With this shift in power, what once was threating and frightening now becomes the stuff of humor—as if “the world couldn’t hurt me when I was narrating it.”

The power of engaging in disability artistry is a recurring theme throughout all the portraits that shape this documentary’s narrative. Creating work as blind artists enables them to heal the wounds created by living in a world dominated by sightedness. It gives them back what they once thought they might have lost—their visibility or sense of themselves—allowing them to regain and reassert their agency.

But what about the case of Evans? In Vision Portraits, these artists’ negotiations of blindness through their art are witnessed by Evans as he undertakes his own journey through similar territory. The meta-narrative of the film—the filmmaker trying to figure things out through filmmaking—shapes each portrait as audiences witness each artist trying to figure things out through art making. If art can be a process of dealing with, healing through, and eventually dwelling in blindness, then making Vision Portraits becomes Evans’s way of doing so for himself (just as performing Nearly Sighted was for Hamilton, writing Cockeyed was for Knighton, and portrait photography was for Dugdale).

In fact, drawing an analogy to coming-of-age films, Vision Portraits can be thought of as a coming-of-blindness film. The protagonists of coming-of-age films drift away from their childhood, the place they were once settled in, toward adulthood, a place to which they do not yet (fully) belong; and the plot follows them as they try to figure their way out through a storm of emotions and encounters. In a similar manner, Vision Portraits follows Evans through his coming-of-blindness story as he departs from a world of sightedness, meandering in the literal and metaphorical shadows as he seeks to come to terms with his declining vision. In one scene, someone (the camera) is walking in a dark forest, passing through bushes and branches, with the sounds of birds and insects, and with animals howling in the distance. Vision Portraits, then, is also its creator’s own rite of passage into blindness.

Becoming Disabled as a Rite of Passage

Originating in anthropology, the term “rite of passage” refers to ceremonies that mark and mediate an individual’s transition from one social status to another. According to Arnold van Gennep’s classic formulation, these rites involve three stages: separation (in which an individual is disconnected from an existing order), transition or liminality (a zone of uncertainty and unknowns), and incorporation (where the individual is finally reintegrated to society). ⁶ It is no surprise that on the film’s soundtrack Evans refers to his situation as a “liminal space”:

I don’t want to be in this liminal space. For me, it’s a place that’s completely scary and frightening. It is enraging. I think—I think of it as, uh … a restriction on—on my freedom. I wish that I could have the freedom that I had before I was diagnosed. You know, it’s hard to imagine that freedom might lie in the other direction: total blindness.

Whereas Evans considers himself in a place of liminality that feels like a constraint on the freedom that he used to have preblindness, Dugdale talks of blindness itself as a kind of freedom. He recalls how his friend Octavio, whom he describes as “a happy fully blind person,” assured him that he would become free the day he lost the little bit of sight he had left. In turn, Dugdale now assures Evans that freedom can indeed lie “in the other direction”—visually signified by the train that is passing through a tunnel in Knighton’s vignettes.

This is precisely what Evans yearns for. At the beginning of the documentary, he says: “I’m just looking for guidance in how to be a blind artist.” And it is the wisdom and expertise of the three other artists, who are at different stages in their rites of passage into blindness, that guide him in the process. Just as at one point in the documentary a sighted pedestrian offers her elbow to Knighton to guide him along a path, all three offer their elbows to Evans in his passage into becoming a blind artist, and gently point to the potential paths to take. In Evans’s case, the guides are the blind people themselves, who hold the embodied knowledge of how to dwell in blindness and can thus guide the newcomer through his “rites of passage.” They are the ones to provide the wisdom, rites, and initiations into a new way of being in the world.

By absorbing the experiences of the three artists, Evans as filmmaker gradually grows into blindness—a process akin to how the protagonist of a coming-of-age film grows into adulthood. As such, what was “hard to imagine” at the beginning of the film becomes a possibility toward its end, when Evans says, looking at the cloudless Berlin sky, where birds are flying in the distance: “I’m feeling kind of strangely serene about it. I feel like I’m able to function in a way that, you know, that I feel pretty happy and pretty … sustained … in what I’m doing.”

But arriving at that point of happiness is not at all smooth, instinctive, or frictionless. The characters in Vision Portraits remind the audience that although living a happy life as a blind artist is possible, no one get there without struggle. There are things to figure out in coming to grips with “crip time.”

Reckoning with Loss

In disability cultures and scholarship, the different temporal realities of dwelling in the world as a disabled person are often described as “crip time.” Ranging from the time it takes for a person in a wheelchair to go from point A to point B to the pace of uttering a word when stuttering, crip time refers to how time can differentially expand, contract, or accelerate, depending on the particularities of one’s impairment and on the ableist environments in which those impairments are lived.

Since its emergence, the concept has been mobilized to disrupt normative notions of time with an activist blow, and to give a name to, claim, and embrace the time of disability. Recently, however, some scholars have pointed out that not all aspects of crip time lend themselves to celebration. Crip time, according to Ellen Samuels, is “grief time,” a “time of loss,” a process through which, with “each new impairment, I grieve again for the lost time, the lost years that are now not yet to come.” ⁷ Thinking of loss in relation to her future, Alison Kafer candidly writes, “I am not interested in becoming more disabled than I already am.” ⁸ Echoing Kafer and Samuels, Emma Sheppard asserts that crip time “must include … time to be unsure, ambivalent about disability, and time to mourn future possibilities that can no longer be.” ⁹

These assertions of the complexity of crip time are part of a broader turn in disability studies to a reckoning with issues of loss, pain, sadness, ambivalences, and other unpleasant feelings—all issues that the field, for understandable reasons of pride and empowerment, has frequently pushed to its margins. Vision Portraits is a powerful response to this call, addressing something that scholars like Samuels, Sheppard, and Kafer yearn to see receive more attention. It compellingly articulates the complexities of disability, such as recognition of loss, the mercurial effects and turbulence of emotions that this loss might stir up, the wish to not lose more capacity, and the volatility and unpredictability of crip time—in this case, a passage into blindness.

Rodney Evans is able to portray such passages not only because each artist happens to be at a different point in their rites of passage into blindness but also because of the brilliant way in which he brings together their stories in a narrative and visual fashion that prevents a romanticization of the process. Knighton, for example, considers his turn to autobiographical accounts of his blindness as his path into becoming a writer. “I swear,” he says, “that’s the moment I became a writer.” By contrast, Evans shares his fears that blindness might be his way out of being a filmmaker. “There’s an added sense of urgency to making films now,” he says, before he loses more of his sight—a sensibility that is visually signified by a montage of fast-moving street lights and film clips. A progressive disease, with more deterioration and loss on the way, makes the clock tick faster for a blind filmmaker. In his case, crip time is accelerating.

For Knighton, however, there seems to be no clock ticking at all. After having gone through his own rite of passage, he is finally dwelling in blindness—or, in his own words, “settling in [his] skin in a way [he] hadn’t before.” Crip time seems to feel expanded for Knighton: he can write more and more.

While Dugdale unhesitatingly says that he does not want to get his sight back, Evans flies across the Atlantic to receive an alternative experimental medical intervention with only a slight chance of giving him (some) portion of his sight back. Dugdale considers his experiences as a blind person “fun,” “rich,” and “moving.” In a cheerful tone, describing the effects of his blindness, he says: “I’m so happy that I stayed on the planet to experience them.” Hamilton, on the other hand, recalls in tears the time when she nearly lost all her sight. “That was the longest, like, three, four months of my life,” she says. “I was so depressed, I had [sighs] you know [sniffles] … I was really ready to kill myself.”

Importantly, as Vision Portraits goes on to demonstrate, passage into blindness never happens in isolation from other marginalized embodiments and social positions. “I’m already within … one of the most racist, homophobic [laughs] industries [laughing] that exist,” Rodney Evans says, sharing his hesitation to add blindness to an already precarious intersectional reality. In other words, the already accelerated clock of crip time might be ticking at an even faster rate for a Black, gay blind filmmaker than it would for an unmarked blind filmmaker.

Alison Kafer is again helpful here: “I realize that [my] position [of not wanting to become more disabled] is itself marked by an ableist failure of imagination, but I can’t deny holding it.” ¹⁰ Evans did not want to become more blind, and Hamilton thought of killing herself upon losing her sight; but these reactions do not mean that they lack the realization or political awareness that Kafer advances. (Vision Portraits and Nearly Sighted provide proof to the contrary.) Rather, the two positions are not mutually exclusive. “We need time to be sad, to be frustrated,” Sheppard writes, “even as we acknowledge that the reason for our sadness and frustration are ableist structures, norms, and expectations.” ¹¹

Tears and sadness, being angry at becoming blind, being depressed, even having suicidal thoughts about remaining blind—all are just as much a part of the process of becoming blind as are dwelling in serenity, thriving, and finding an aesthetic resource in blindness. Mourning what one has lost, fearing that what remains will also be lost, seeking and desiring cures—all belong to the process of becoming blind. They, too, are stories of disability. Exactly because Vision Portraits holds space for these rather uncomfortable, harder-to-embrace aspects of disability, it is squarely situated within disability justice politics. Because difficult aspects, situations, and positions exist and persist, it is crucial to have more documentaries like Vision Portraits, more performances like Nearly Sighted, more experiential life stories of blindness, and more disability imaginaries that can help to offer alternatives to hegemonic ableist narratives that counter the “inability to imagine disabled lives” as lives worth living. ¹²

Unlike traditional rites of passage (such as graduations, weddings, funerals), which are already scripted and rehearsed countless times and reiterated, there are no scripts, no guides, and no customs for how to come to live with and dwell in disability. In the absence of such narrative traditions, newcomers to disability can hope to learn from already disabled peers who take the time and energy to provide guidance, to walk/wheel them through, and, yes, to write scripts and fashion documentaries for their rites of passage into disability. Thanks are owed to Hamilton, Knighton, and Dugdale for doing just that.

An Aesthetics of Access in Vision Portraits

One of the significant stylistic interventions that Evans brings to Vision Portraits is his incorporation of audio description (AD)—an additional audio track that narrates the visual elements of a scene for the benefit of blind audiences—as an aesthetic element in and of itself. As many in disability arts have argued, access can be a creative methodology, and audio description (as a type of access) can be a form of art, poetry, and a critical intervention into the medium of film itself. ¹³ In line with this tradition, Vision Portraits refrains from the standardized approaches of the industry, which often treats AD as a form of code compliance, reducing it to a mere add-on. Instead, the film explores what possibilities AD may open up in terms of storytelling and access, in three particular ways.

First, not all image sequences are audio-described. In fact, when Knighton is narrating his visit to the Sweetwater, Texas, rattlesnake round-up, AD is not heard for almost five minutes, allowing the audience to hear the dialogue and ambient noise of this event even though there are many intermittent images (such as the rodeo, snakes, or people walking in the desert). Similarly, some of Dugdale’s photos are described, while others are not. Of course, these choices have to do with technical limits. Whenever speech dominates a scene, as often is the case with Knighton and Dugdale, there is less space left for standardized AD. Although alternative methods exist to circumvent this limit by using AD as anticipatory by describing images before their actual appearance, or as interventionist by freeze-framing, Vision Portraits does not resort to these devices. ¹⁴ Instead, Evans makes choices as a filmmaker, taking into account the various elements he has to balance and the overall aesthetic of the film. Description is inherently political because people make choices about what and how to describe or not to describe. Rather than assuming that AD is a value-free, neutral, and objective access add-on, Evans takes up AD as an aesthetic element and treats it as an inherently subjective process shaped by choices through and through.

Second, whatever details Evans omits on the AD track constitute a deliberate aesthetic choice, not a shortcoming. As Bojana Coklyat and Shannon Finnegan point out in their publication Alt-Text as Poetry Workbook, alt-text (in this case, AD) is not only about what is lost but also about what is gained: “[T]he act of describing,” they write, “also adds information.” ¹⁵ In several scenes of the audio-described Vision Portraits, the AD calls attention to details that would not be noticed without the AD track, such as the barely visible reflection between two subway cars—a description that followed Evans’s account of his doctor telling him how he would gradually lose his sight. Such stylistic choices heighten the effect of the brilliant visual representations of what is being narrated. Thanks to the AD, for instance, I realized that Evans was watching Hamilton’s dance performance “with his knuckles against his lips,” suggesting admiration and deep contemplation, and that he puffed his warm breath into the cold air as he got off the plane in Germany to seek an experimental treatment, revealing the sensory elements of a crisp chill. The AD, in fact, makes Vision Portraits into another film entirely. With its aesthetic choices guiding the viewer/listener to see the film in other ways than they initially experienced, AD took on a “pedagogical” function, as Georgina Kleege and Scott Wallin argue, affording access not only to blind but also to sighted audiences. ¹⁶

Third, the pacing of the AD throughout the film has a particular aesthetic quality. In the sections where music accompanies the sequences (such as when Dugdale’s photos are displayed one after the other with piano music playing in the background or when Hamilton is dancing on the stage with swift moves), the obviously well-trained describer accelerates her speech rate in ways that satisfyingly match the editing pace. These rapid sequences function almost as minifilms within the film; when they are followed by slower-paced AD, that AD takes on a particular temporal aesthetic that makes it pleasurable for anyone to listen to without too much distraction.

Closed captioning (CC) for Deaf or deafblind audiences, however, still has room for improvement. Whenever music was playing, only a music icon was used, except for a few scenes where the sensibility of the music was described. As Deaf sound and visual artist Christine Sun Kim notes, just an icon or the word “music” does not tell “anything about what that sound is made of. How it moves. Its personality.” ¹⁷ For example, when Knighton is telling his story about becoming blind, the use of an eerie bass track in the background is very much part of the scene’s aesthetics, as are the gentle piano tones accompanying Dugdale’s tender and erotic photos of naked bodies, but neither of these are described.

Nonetheless, Rodney Evans has created an exemplary documentary, telling extraordinary stories about “becoming blind” while also taking the aesthetics of access seriously in ways that will hopefully inspire other disabled and nondisabled filmmakers in their future work. Thank you, Rodney Evans, for gifting the world with this hard-won wisdom and artistry.

Notes

1. Nirmala Erevelles, Disability and Difference in Global Contexts: Enabling a Transformative Body Politic (New York: Palgrave Macmillan, 2011), 36.
2. Eliza Chandler, “Disability and the Desire for Community” (PhD diss., University of Toronto, 2014). Chandler writes of “the desire to dwell with disability,” which she considers to be a desire that “is antagonistic to the normative desire to cure or kill disability” (4). According to Chandler, it is “the “shared understanding” or communal investment in” this desire that leads to the creation of crip communities (38).
3. Christopher Reed, “A Conversation with Rodney Evans (VISION PORTRAITS),” Hammer to Nail, March 6, 2019, http://www.hammertonail.com/shorts-contest/rodney-evans-interview/.
4. Mia Mingus, “Access Intimacy: The Missing Link,” May 5, 2011, Leaving Evidence (blog), leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.
5. Rosemarie Garland-Thomson, Staring: How We Look (Oxford and New York: Oxford University Press, 2009).
6. Arnold van Gennep, The Rites of Passage (London and New York: Routledge, 1960).
7. Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability Studies Quarterly 37, no. 3 (2017).
8. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 4.
9. Emma Sheppard, “Performing Normal but Becoming Crip: Living with Chronic Pain,” Scandinavian Journal of Disability Research 22, no. 1 (2020): 45.
10. Kafer, Feminist, Queer, Crip, 4.
11. Sheppard, “Performing Normal,” 45.
12. Kafer, Feminist, Queer, Crip, 45.
13. See Amanda Cachia, “‘Disabling’ the Museum: Curator as Infrastructural Activist,” Journal of Visual Art Practice 12, no. 3 (2013): 257–89; Bojana Coklyat and Shannon Finnegan, Alt-Text as Poetry Workbook, https://alt-text-as-poetry.net/; and Arseli Dokumaci, “Disability as Method: Interventions in the Habitus of Ableism through Media-Creation,” Disability Studies Quarterly 38, no. 3 (2018).
14. Dokumaci, “Disability as Method.”
15. Coklyat and Finnegan, Alt-Text as Poetry Workbook.
16. Georgina Kleege and Scott Wallin, “Audio Description as a Pedagogical Tool,” Disability Studies Quarterly 35, no. 2 (2015).
17. Christine Sun Kim, “Artist Christine Sun Kim Rewrites Closed Captions” (2022), YouTube video, 7:46 [2022], https://www.youtube.com/watch?v=tfe479qL8hg.

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media, Winter 2022

By Jenny Chamarette

Stephen Dwoskin is best known for his provocative, avant-garde, and often sexually explicit filmmaking. A Brooklyn-born member of the East European Jewish diaspora who moved to the United Kingdom in the mid-1960s, Dwoskin has been an acutely understudied filmmaker, despite his work’s important legacies for experimental film and media in Europe and North America. Before he left New York in 1964, he worked with Andy Warhol and Jonas Mekas and before that trained at the Parsons School of Design/The New School with Willem de Kooning and Josef Albers.

Once in the United Kingdom, he was instrumental in establishing the London Film-Maker’s Co-op (LFMC), modeled after Jonas Mekas’s Film-Maker’s Cooperative in New York. He was later distanced from the LFMC, partly because his work differed from the structural-formalist work emerging in the 1960s through the 1980s in Britain and partly because of disparaging perceptions of his work in some (but not all) sex-negative feminist circles. Nonetheless, from the 1970s through the 2000s his films were celebrated at experimental-film festivals in Knokke and Rotterdam, and he continued to receive commissions from French, German, and British television.

In histories of experimental film, Dwoskin has defied easy categorization: a disabled polymath who left a flourishing career in graphic design in New York for a Fulbright Fellowship that was to enable him to become a filmmaker in London’s 1960s underground culture. Despite his prolific film production, which ended only with his death in 2012, his entry into histories of experimental film seems often to stop in the sixties: a footnote to media history, fixed in place in the happenings and radical cultures of New York and London of 1962–69. ¹

Seeing Dwoskin as a disabled filmmaker is also fraught: his intimate style of personal filmmaking did indeed draw on experiences of illness, disability, desire, and recovery. But sexuality, performance, and vulnerability (particularly of the women in front of his camera) also featured prominently, especially in his earlier works Dyn Amo (1972), Girl (1975), and Central Bazaar (1976). He made films about other documentary subjects too: on photography in Shadows from Light: The Photography of Bill Brandt (1983) and on black dance in Ballet Black (1986). In every identitarian construction there lies the shadow of nominative exclusion as produced by dominant cultures. Dwoskin was all too aware that describing himself as a disabled artist might marginalize him from the realm of art in general and silo his work into the exclusive and excluding frame of disability. He articulated this ambiguity regularly, in both his filmmaking and his curating.

There is a push-me-pull-you dynamic to identity formation and canonical exclusion—between disability as a social (mal)practice of exclusion and the Crip as a contemporary anti-identity—which emerged in the last years of Dwoskin’s life. This latter formation—the Crip and crip subjectivity—has been identified by scholars such as Carrie Sandahl and Robert McRuer, and more recently by queer feminist and/or BIPOC scholars such as Alison Kafer and Sami Schalk. ² Thinking about Dwoskin both as a survivor of polio (who walked using calipers and crutches and then shifted to using a wheelchair in later life) and as an experimental filmmaker (whose substantial archive reveals the range and technological adaptability of his work from 1962 to 2012) calls up a complex temporal dynamic concerning identity, time, and technology.

How to keep bringing the histories of disabled filmmakers to light in an era of shifting historiographies of disability and of media? Discourses of representation often emphasize how disabled artists have been marginalized or their contributions erased. But Dwoskin’s work, and the archive of his life’s work now catalogued and housed at the Special Collections at the University of Reading, in the United Kingdom, present a newly charged historical problem. Dwoskin’s archive provides rich resources—spanning over sixty years of filmmaking practice and lived experience as a disabled filmmaker—that add granular detail to the broader histories of disability and film in the United States and the United Kingdom. At a time when there has been a recent groundswell of visibility in crip art and disability media—such as the landmark Crip Time group exhibition at Frankfurt’s Museum für Moderne Kunst (MMK), which ran from September 2021 through January 2022—it becomes all the more important to seek out the deeper archival histories that support new waves of disabled creative practice.

In the case of Dwoskin, the issue is not any absence or lack of data, but rather pertains to a new methodology: how to reveal the productive specificities of Dwoskin’s creative activity as active tactics of technological adaptation and crip technoscience? The analog and digital archives are source materials that bring to light the specific qualities of Dwoskin’s digital knowing-making and cinematic world-making. This archive is a political project, challenging neoliberal and ableist discourses of imaginary individuality that consider “disability as an individual experience of impairment rather than a collective political experience of world-building and dismantling.” ³ Together with Dwoskin’s back catalog of films, the archive also invites a complex reappraisal of the entwined histories of disability, digital filmmaking, crip time, and technoscience—a beginning, not an end, to understanding the complexity of disability’s challenge to “normate” worldviews at every level.

Dwoskin’s resistance to labeling and categorization did not deter him from making personal films about disability. There is no doubt that personal experiences of impairment and of the cultural and social oppressions of disability were formative for him. Dwoskin was a lifelong advocate for disability rights, with an array of film productions that directly and indirectly present disabled worldviews. Starting in the mid-1970s, Dwoskin became active in disability activist communities. His Behindert (1974) stages the rise and fall of a romantic and intimate relationship between a disabled man and an able-bodied woman, as played by Dwoskin and his former partner, Carola Regnier, in a fictionalized reenactment of their earlier love affair.

By the 1980s Dwoskin was increasingly vocal within emerging political discourses on disability rights. In 1981, he released the feature film Outside In, a series of often comical, and sometimes dark, autobiographical vignettes restaging moments from his life in which nondisabled interlocutors make flailing, inept, foolish, even dangerous attempts to respond to Dwoskin’s disabled body. With Allan T. Sutherland, Dwoskin programmed the first disability film season at the National Film Theatre at BFI Southbank, in London, controversially entitled Carry On Cripple: Disablement in Film. Clare Kitson’s essay in the opening program notes stated: “If our title offends your sensibilities, then you need this season.” The series interrogated tropes of disability in cinematic representation, which Dwoskin later identified in his documentary Face of Our Fear (1992) as having done more to entrench stereotyped cultural attitudes to disabled people in one hundred years than literature had in the previous four hundred. During the Carry On Cripple season, Dwoskin and Sutherland also took the unprecedented step of supplying accessibility guidelines for screenings, which exponentially increased audience attendance by disabled people.

Dwoskin’s own writing in Disability Arts Magazine in 1991–93 explicitly addressed the issue of disability stereotypes deployed by mainstream movies, including the frequent use of disabled people as devices for narrative progression, as objects designed to facilitate the able-bodied protagonist’s savior complex, and as signifiers of evil or deficiency. In 1991, the United Kingdom’s Channel 4 commissioned Dwoskin to produce the first film in their “Disabling World” series. The resulting TV documentary, Face of Our Fear, discussed the stigmatization of disability in histories of Anglo-Western cultural representation, as well as the logical and horrifying culmination of such excluding and stigmatizing processes in the Nazi eugenics project. Refusing to be framed exclusively by narratives of death and genocide, Face of Our Fear is punctuated by improvised sketches performed by disabled people reading from newspaper cuttings and archival reports. It also incorporates footage of demonstrations and collective action by disabled people staged outside television broadcasting studios against telethons—the televised charitable campaigns of the late 1980s that positioned disabled people as pity cases rather than agents of their own destiny.

Many of the issues identified by Dwoskin in this period have close affinities with disability scholarship undertaken in the same era, including critical appraisals of media and film. ⁴ Dwoskin’s work was, in fact, both part of the emerging discipline of disability studies and a broader moment in disability activism and legal advocacy in the United Kingdom and the United States that culminated in the UK Disability Discrimination Act in 1995 and the Americans with Disabilities Act in 1990. ⁵

At the same time, Dwoskin’s increasingly digital process from the early 1990s onward supported him as he experienced declines in his physical health, which limited his capacity to hold a camera for long periods of time. In particular, his transition from using calipers and crutches in his younger years to using a wheelchair from the mid-1990s onward had significant impacts on the inventiveness of his filmmaking methods—as did the onset of post-polio syndrome, which resulted in a number of hospitalizations in the late 1990s and the 2000s.

Documents from the archive confirm these shifts in his practice. Stills from Face of Our Fear show Dwoskin supporting a Hi8 camera on his right shoulder, seated in his chair to film. By September 2003, in an (unsuccessful) application to support his emerging digital filmmaking practice through a fellowship for disabled artists from Artsadmin, a UK organization promoting social and environmental justice in the arts, Dwoskin writes: “[W]hereas earlier I used to explore my subject matter via a ‘moving’ camera that was in essence my own persona, I now have to find a way to explore relationships from what has become a ‘fixed’ wheelchair bound position. In this state, my immediate environment changes—spaces, rooms and absences will become more of a subject, I suspect.” ⁶

Dwoskin expertise with digital filmmaking tools expanded rapidly and early, from Hi8 cameras in Face of Our Fear to the expansive possibilities of Final Cut Pro circa 2000, to mini-DV tape recordings, to the digital precision of an iPad toward the end of his life in 2012. Dwoskin also adjusted his process, often collecting material filmed by friends, partners, carers, and coworkers rather than remaining behind the camera. ⁷ His increased technological agility in the face of deteriorations in his physical health, the evolving shape of his disability rights activism and advocacy in the arts, and the emergence of a new film aesthetic in the late period of his work (1990–2012) are all part of a complex interplay of technological aptitudes and activist impulses.

They also reflect a shift in the focus and aesthetic form of Dwoskin’s later autofictional and autobiographical films—Trying to Kiss the Moon (1994), Pain Is… (1997), Intoxicated by My Illness (Parts 1 & 2 “Intensive Care”) (2001), Some Friends [Apart] (2002), The Sun and the Moon (2008) and Age Is … (2012)—which regularly include sequences in Dwoskin’s home in Brixton: the sky from his kitchen window, friends who visit, and his home studio with computers and editing suite—all testifying to the integration of home and technological world-making.

At a time when his health was starting to decline, Dwoskin’s late period of work was often preoccupied with the spatial and sexual politics of the disabled body. Intoxicated by My Illness was controversial at the time of its release for its combination of footage of his periods of temporal and spatial stasis (represented via handheld digital-camera footage of Dwoskin’s extended hospital stay in 2000–2001, including depictions of him while unconscious and intubated) with footage of his BDSM practices with sex workers at his home. Ultimately, in these later digital and cusp-of-digital works, Dwoskin’s praxis and self-representation blur the logic of normatively embodied desire, illness, and subjectivity, making room for a counterclaim to able-bodied notions of temporality, spatial fluidity, and sexuality.

After 2001, Dwoskin’s films reveal a technology of phenomenological exploration: what it is to be a desiring, activist, empathic, periodically well and unwell disabled man. Rather than tell another story of marginalization, Dwoskin’s late films demonstrate his immensely adaptive technological and political capacity, examining the lived conditions of an aging body navigating both serious illness and the deteriorations in health linked to his experiences of physical impairment. In addition to Intoxicated, these films include The Sun and the Moon, Phone Strip (2007), and Age Is…, with their contemporary insights into living in the margins. Age Is… is a collage film developed collectively under the emergent politics of post-2010 austerity. Other films form a series of autobiographical, essayistic reflections, using found footage and home movies that focus on Dwoskin’s family and friends, as in Some Friends [Apart], Grandpère’s Pear (2003), and Mom (2008). These later films are invested in a deep mode of knowledge production from the body, including his own as well as the bodies of those who surrounded Dwoskin during his life course, displaying an equally deep investment in his historical and contemporary world.

In his book Crip Times: Disability, Globalization, and Resistance, Robert McRuer specifically locates his analysis in the United Kingdom, where austerity politics and its eugenicist effects, as well as radical resistance from disability activists and organizations, have risen to prominence since 2010. This was indeed the country where Stephen Dwoskin made his home beginning in 1964 and in which he experienced ever more complicated and exhausting legal and social battles to receive care that adequately met his needs—the same country in which he died, in 2012, two years after a coalition government introduced savage cuts to health and social care. The crip times that McRuer describes carry “both harshness and potentiality, along with the simple fact that … crip radicalization is the direct result of an age of austerity.” ⁸

The Dwoskin archive, and especially his late filmography, offer extraordinary insights into both the politics of austerity and the lives of communities considered too marginal to protect. When Dwoskin wrote about disability in published articles or in his treatments for films made and unmade, he wrote about disabled experience as both consistently regular (in terms of the environments and interpersonal situations that regularly created difficulty, obstruction, and, on occasion, humor) and irregular (in relation to the strange hallucinogenic worlds of pain and acute illness), but he also emphasized the imaginative possibilities opened up by an attunement to these temporal shifts.

The strange, shifting temporalities of Dwoskin’s work resonate with what disability scholars describe as “crip time.” In writer Ellen Samuels’s words:

Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. ⁹

The surreal nature of crip time, its capacity to create ruptures in the space-time continuum, as well as its latent politically radical potential, are all acutely presented in Dwoskin’s filmmaking, especially Intoxicated by My Illness. Dwoskin was heavily influenced by surrealism and protosurrealism, and the work of Alfred Jarry features prominently in his engagements with sexuality and the feminine. Although Intoxicated’s hallucinatory qualities may suggest a contemporary instantiation of surrealism, it also produces a very poignant phenomenology of the intensive care unit at the turn of the millennium—its sounds, noises, colors, and textures, all slowed down, repeated, and recycled through a range of digital editing techniques—as well as intense bursts of eroticism and sex acts through explicit sequences of BDSM sexual play back home at Dwoskin’s residence. In connecting care (technological and human) in hospital settings to care in sexual settings, Intoxicated also reveals historic alliances between disabled people and sex workers in a way that strongly aligns with recent research on sexual citizenship and disability. ¹⁰

This mode of deep, embodied knowledge, which evolved through Dwoskin’s filmmaking practice, even when his health was extremely precarious, chimes with recent scholarship in feminist technology studies and critical disability studies—specifically, Aimi Hamraie and Kelly Fritsch’s recent “Crip Technoscience Manifesto.” ¹¹ Their manifesto asserts the amplitude of “knowing-making” in disability communities, in advancing technological change with and for the individual, and in the collective power of those communities. This pragmatic epistemology of technoscience enables a retrospective analysis of Stephen Dwoskin’s practices—in particular, his digital filmmaking.

It is in the Dwoskin archive, both physical and digital, that evidence presents itself for scrutiny as a form of crip technoscience. Data from Dwoskin’s hard drives, predominantly from 2006 to 2012, has been recovered by deploying forensic tools to explore their metadata, such as time stamps for file saving and file types; types of files most regularly accessed and stored; even the structures, forms, and frequency of email contacts. Preliminary findings already provide insight into Dwoskin’s creative processes as a digital artist. ¹²

Sunburst data visualizations of the file structures of Dwoskin’s hard drives and of Dwoskin’s email networks as spheres of influence (including both those with whom he was in most regular correspondence and those on the peripheries of contact) provide a more comprehensive analysis of Dwoskin’s interventions, which in turn might help better understand his processes as a crip technoscientific agent who worked collaboratively and interdependently to gather and edit film material. Algorithmic content analysis has revealed some preliminary data on Dwoskin’s preoccupations with the face and facial expression in Age Is …, his final, posthumously released film. Digital reconstructions of Dwoskin’s workstation, designed by researchers at the University of Glasgow in collaboration with the Special Collections at the University of Reading, are beginning to unearth the complexity of Dwoskin’s knowing-making in relation to his editing practices. Indeed, the archive itself—more specifically, the formation of the archive, which began with Dwoskin’s safekeeping of the materials of his life and practice and ended with its cataloguing at the University of Reading—is a practice: a technology of knowing-making.

Dwoskin’s paper archive, too, is rich in material insights regarding the interaction between technological distribution networks at film festivals and the logistical/technological accessibility requirements necessary for Dwoskin to travel with them. For example, a fax sent in advance of screenings of his Behindert and Outside In at the first Festival Europeo Cinema Handicap, held forty years ago in Turin, in December 1992, combines clarification of Dwoskin’s transportation and accommodation requirements with information on the technological supports required for analog video and film copies of the films. ¹³

Digitality and disability are closely affiliated structures for Dwoskin’s creative process. The archive shows a clear transformation from his earlier techniques of advocacy and awareness raising in the public sphere, predominantly addressing a normatively able-bodied audience, toward an agile intertwining of digital networked technologies, crip cultural advocacy, and cinematic world-building. Dwoskin’s late creative work thus retains aesthetic, social, and cultural influence in his wider environment, while also securing the specific poetics of his image making: a crip technoscientific project of historical importance.

The entwined strands of digital agility, technoscientific adaptation, and the phenomenological explorations of desire, illness, and subjectivity in Dwoskin’s work and archive comprise, I would suggest, a “backdated” model of the Crip Technoscience Manifesto upheld by Hamraie and Fritsch. In light of the temporal interruptions that crip time creates, willingly or not, in the linear fabric of capitalist time, it makes sense to rework those temporal loops, to better understand how digital filmmaking and technoscientific world building combine in Dwoskin’s work.

And why not? As the late Tobin Siebers describes the term in his wonderfully careful work, “disability aesthetics” revise the temporal directions of histories of art, inflecting the present and the past in mutually reflexive relation. ¹⁴ Disability aesthetics respatialize the question of beauty: away from binary or exclusionary concepts of wholeness or perfection and into a holistic framework that claims fragmentation as wholeness, perfection as deformation. Disability aesthetics make strange the illusion of compulsory able-bodiedness—just as Dwoskin, in Intoxicated by My Illness, makes strange the illusion of health, the illusory distinction between erotics and care, and the illusory nature of able-bodied, “normate” time (to use Rosemarie Garland-Thompson’s term). ¹⁵ Dwoskin’s filmmaking can thus be seen as constituting both a crip technoscientific project and a model of disability aesthetics.

For Hamraie and Fritsch, crip technoscience combines “the productive and non-innocent entanglement of scientific knowing and technological making” found in feminist technology studies from thinkers such as Donna Haraway and Karen Barad with a “field of research and a practice of critical ‘knowing-making’ that “highlight[s] the skills, wisdom, resources, and hacks [that] disabled people utilize for navigating and altering inaccessible worlds.” ¹⁶ In contrast to disability technoscience, with its tendency to focus on assistive technologies designed for disabled people by nondisabled developers, crip technoscience emphasizes “world-building and world-dismantling practices by and with disabled people and communities that respond to intersectional systems of power, privilege, and oppression.” ¹⁷

Hamraie and Fritsch use the term “non-innocent entanglement” to acknowledge technoscience’s embedded relationships to the military-industrial complex and capitalist exploitation, but they advocate, following Haraway, for “modest witnessing” that understands the potential for complicity and acknowledges that no transformational process is frictionless. ¹⁸ Most importantly, they point out that “disabled peoples’ maker practices have not yet been fully considered in the radical political history of disability studies.” ¹⁹

In Face of Our Fear, Dwoskin was already there: his voice-over discusses the formation of the “typical body,” a structure widely adopted in design theory and influenced by industrial designers in the 1960s such as Henry Dreyfuss. In Dreyfuss’s design manual The Measure of Man, anthropometrics (the use of measurement and percentiles of populations) were used to create design structures that were derived from the “average” body. ²⁰ While this paradigm of design development accounted for distribution differences in populations, including child/adult, gender, and weight, it also presented significant problems for individual embodiment. Since Dreyfuss developed these anthropometric models from US military and population data in the 1960s, his data did not account for ethnic, racial, or geopolitical diversity, or for the impact of global events—like war, famine, and global epidemics—on human bodies. While instances of impairment were acknowledged, they were also generalized and abstracted, and restricted to the use of wheelchairs, or perhaps crutches. The “typical body” substituted for real people, thereby avoiding distinctive and unique patterns of moving through the world. Designing from the template of the “typical body” outward thus assigned disabled or nonnormate bodies to the margins.

As Aimi Hamraie points out, “[F]lexible design for a range of users always referred to standardized forms of knowledge and conceptions of a vulnerable and manipulable body, whose disabilities required elimination through better environmental design.” ²¹ Sharon Snyder and David Mitchell similarly demonstrate how the healthy, productive, environmentally unencumbered able body is aligned with models of neoliberal capital and nationalist body politics. Snyder and Mitchell specifically refer to “ablenationalism” as the “tactic of integrating a privileged minority at the expense of the further abjection of the many.” ²²

Dwoskin does not simply identify models of ablenationalism in action, but uses cinematographic means to disrupt the normativities of built environments and engineering design. A short sequence in Face of Our Fear depicts travel down a constructed ramp, whose steep sides block from view the London street scene that surrounds it. The ramp is unpeopled: it is only when it reaches street level that an able-bodied person walks past the camera. These sequences are intercut with a paper blueprint of Dreyfuss’s “typical” human male body draped over a wheelchair. The chair itself accommodates the blueprint poorly, not simply because of the paper’s absence of joints or folds, but also because the outlined figure is clearly larger than the wheelchair’s intended user. The historical design of adaptive technologies like the wheelchair still carries the traces of ablenationalist body normativity and its assumptions about the kind of body that should inhabit a chair—one deviant from the “typical body” in size, but paradoxically possessing enough postural strength to remain seated for hours, and certainly of sufficient wealth to acquire successive iterations of wheelchairs according to technological advancement and body and health changes. Dwoskin was tall, broad, and strong; he experienced significant back, shoulder, and digestive pain from the consequences of being folded into a chair insufficiently adapted for his needs.

Filmmaking is itself always a world-building project, given the ontologies and phenomenologies of film. Digital film is also embedded in knotty interactions between the military-industrial complex and models of capitalist exchange, ²³ which makes its technologies ripe for intervention under the terms of crip technoscience. Media-arts technologies are highlighted by Hamraie and Fritsch, who cite US collectives like Sins Invalid and draw on the work of Mia Mingus and Leah Lakshmi Piepzna-Samarasinha on “access intimacy” and collective access to describe collective and relational networks of activity with a liberatory focus. ²⁴ While this essay is a necessarily brief assessment of the political and the experiential qualities of Dwoskin’s films of the 1990s and early 2000s, I am reassured that crip technoscience, crip time(s), and disability aesthetics provide a countervailing evaluative force for experimental moving-image works like Dwoskin’s.

A return to historiographies of disability and film is timely: the decade-long effects of austerity politics in the post-2008 era have unquestionably been compounded by the viral times of today. The impacts of COVID-19 have “been unequal, entrenching existing inequalities and widening others…. [T]he groups most likely to be affected by the expected rise in poverty include young people, ethnic minorities, and disabled people, who are already closest to the poverty line.” ²⁵ To that, add the effects of long COVID, the symptoms of postviral chronic illness, whereby “an estimated 1.1 million people in private households in the UK reported experiencing long COVID (symptoms persisting more than four weeks after the first suspected coronavirus … episode that are not explained by something else).” ²⁶ With COVID in its third year of contagion, the global increase in people experiencing disability and living with chronic illness is likely to continue to expand.

For many more people, time is going to slow down, not accelerate. The tools and knowledge of disabled forebears are urgently required to navigate the difficulties of the now. By using the slow ungainliness of crip time to unravel what it is (and how) to be human under the biopolitical forces of ablenationalism, Dwoskin’s films can be seen to embody crip time’s rides and interruptions, not only by dint of will but also because there is no other option. In the form of crip technoscience, political resistance arises from within embodied experience. Presenting that experience on film as it is, entwined with art histories and contemporary politics as well as with the personal lived body, is a radical act.

Author’s note

The research in this essay was made possible by funding from the Arts and Humanities Research Council for the Legacies of Stephen Dwoskin’s Personal Cinema project (grant reference AH/R007012/1), which ran from 2018 to 2022. Using innovative digital forensics, preservation, and content analysis, as well as a comprehensive cataloguing of Dwoskin’s archive, the project developed what it calls a “360 degree” analysis of Dwoskin’s life and works alongside more traditional art-historical and film-theoretical models. My heartfelt thanks to the Dwoskin project team—in particular, Rachel Garfield, Yunhyong Kim, Frank Hopfgartner, Zoe Bartliff, and Henry K. Miller—as well as Guy Baxter, Associate Director (Archives Services) of the University Museums and the Special Collections at the University of Reading, where the Stephen Dwoskin Archive is housed and where underlying archival research can be accessed. No additional data were produced during the course of this study.

Notes

1. David Curtis, A History of Artists’ Film and Video in Britain (London: British Film Institute, 2007), 249–50, http://books.google.com/books?id=qdNkAAAAMAAJ.
2. Carrie Sandahl, “Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance,” GLQ: A Journal of Lesbian and Gay Studies 9, nos. 1–2 (2003): 25–56; Robert McRuer, Crip Theory: Cultural Signs of Queerness and Disability (New York: New York University Press, 2006); Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013); Sami Schalk, “Coming to Claim Crip: Disidentification with/in Disability Studies,” Disability Studies Quarterly 33, no. 2 (2013), https://dsq-sds.org/article/view/3705/3240.
3. 3. Aimi Hamraie and Kelly Fritsch, “Crip Technoscience Manifesto,” Catalyst: Feminism, Theory, Technoscience 5, no. 1 (2019): 12.
4. For example, see Jenny Morris, Pride against Prejudice: Transforming Attitudes to Disability (London: Women’s Press, 1991); Tom Shakespeare, Kath Gillespie-Sells, and Dominic Davies, The Sexual Politics of Disability: Untold Desires (London: Cassell, 1996). For analyses of tropes of disability representation, see David T. Mitchell and Sharon L Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (Ann Arbor: University of Michigan Press, 2000); and Mitchell and Snyder’s earlier film Vital Signs: Crip Culture Talks Back (1995)
5. In the United Kingdom, the Disability Discrimination Act was superseded by the Equality Act (2010).
6. Stephen Dwoskin, “Application for: Artsadmin Digital Media Fellowship for Disabled Artists 2003,” 2003, Stephen Dwoskin Archive, Special Collections, University of Reading.
7. Adrian Martin, “Dwoskin, Centripetal and Centrifugal,” Screen 57, no. 1 (2016): 74–79.
8. Robert McRuer, Crip Times: Disability, Globalization, and Resistance (New York: New York University Press, 2018), 30.
9. Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability Studies Quarterly 37, no. 3 (2017), https://dsq-sds.org/article/view/5824.
10. There is a long-standing and well-documented relationship of mutual support between disabled people and sex workers. See, for instance, Julia Bahner, Sexual Citizenship and Disability: Understanding Sexual Support in Policy, Practice and Theory (New York: Routledge, 2019); and Shakespeare, Gillespie-Sells, and Davies, Sexual Politics of Disability.
11. Hamraie and Fritsch, “Crip Technoscience Manifesto.”
12. Zoe Bartliff, Yunhyong Kim, Frank Hopfgartner, and Guy Baxter, “Leveraging Digital Forensics and Data Exploration to Understand the Creative Work of a Filmmaker: A Case Study of Stephen Dwoskin’s Digital Archive,’” Information Processing & Management 57, no. 6 (November 2020): 102339, https://doi.org/10.1016/j.ipm.2020.102339.
13. Stephen Dwoskin, “The Others and Too Much,” Disability Arts Magazine 3, no. 1 (Spring 1993): 51–53.
14. Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press, 2010), https://doi.org/10.3998/mpub.1134097.
15. Rosemarie Garland-Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, 20th anniv. ed. (New York: Columbia University Press, 2017), 8.
16. Hamraie and Fritsch, “Crip Technoscience Manifesto,” citing Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press, 2017), 99.
17. Hamraie and Fritsch, 4–5.
18. Donna Jeanne Haraway, Modest_Witness@Second_Millennium. FemaleMan©_Meets_OncoMouse™: Feminism and Technoscience (New York: Routledge, 1997).
19. Hamraie and Fritsch, “Crip Technoscience Manifesto,” 5.
20. Henry Dreyfuss, The Measure of Man : Human Factors in Design (Whitney Library of Design: New York, 1960).
21. Hamraie, Building Access, 15.
22. David T. Mitchell and Sharon L. Snyder, The Biopolitics of Disability: Neoliberalism, Ablenationalism, and Peripheral Embodiment (Ann Arbor: The University of Michigan Press, 2015), 44.
23. For more on digital film, cinema, and the military-industrial complex, see Haidee Wasson and Lee Grieveson, eds., Cinema’s Military Industrial Complex (Oakland: University of California Press, 2018), 9.
24. Hamraie and Fritsch, 6; Mia Mingus, “Access Intimacy: The Missing Link,” Leaving Evidence (blog), 5 May 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/; Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver, BC: Arsenal Pulp Press, 2018).
25. Equality and Human Rights Commission, “How Coronavirus Has Affected Equality and Human Rights’, Is Britain Fairer” (Equality and Human Rights Commission, October 2020), https://www.equalityhumanrights.com/sites/default/files/equality_and_human_rights_commission_how_coronavirus_has_affected_equality_and_human_rights_2020.pdf.
26. Daniel Ayoubkhani, “Prevalence of Ongoing Symptoms Following Coronavirus (COVID-19) Infection in the UK,” statistical bulletin (Office for National Statistics, UK, 1 April 2021), https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/1april2021.

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media, Winter 2022

By Pooja Rangan

Jordan Lord’s Shared Resources (2021) uses access features—namely, open captions and burned-in audio description—as a medium of crip creativity. A meditation on Lord’s father’s self-reliant attitude toward war debilitation, debt, disability, and bankruptcy, the film asks what it means to listen from the perspective of the out-of-synch and misfitting temporal experiences that Alison Kafer and other disability scholars have called “crip time.” ¹ To listen in crip time, Lord shows, is to rethink the temporality of access, turning it from an afterthought into a building block of documentary language. At stake in this intervention is nothing less than a countertheory of documentary.

A number of other crip-identified film and video artists, including Carolyn Lazard, Constantina Zavitsanos, Christine Sun Kim, and Park McArthur, have recently staged critiques of the low institutional bar in place for meeting legal accessibility standards in compliance with the Americans with Disabilities Act of 1990. Lord brings this critique into the documentary form itself, revealing access to be the fulcrum of what Irina Leimbacher has called the “inquisitive and acquisitive” conventions of documentary listening. ² In industry parlance, “access” is often understood in transactional and extractive terms: as the leveraging of money, force, reputation, or trust to acquire entrance to private or inaccessible realms deemed to harbor documentary value. By reframing access as a shared resource and responsibility, Lord’s film invites a “sideways listening,” an attention and an appetite for access understood as neither entitlement nor resentful obligation, but rather as a collective practice of care that swells documentary meanings and horizons.

Shared Resources begins where vérité films in the Rouchian mold sometimes end. Lord’s mother and father, both principal participants in the film, are shown reacting to an early cut of the film. (Lord has said the film was made “in consultation” with them.) “I didn’t just dislike it, I loathed it. Hated it, despised it,” says Albert, Lord’s father, objecting to a pivotal scene in which he appears visibly and audibly disoriented after a hospital visit. Later in the film it is revealed that Albert lives with life-threatening chronic illnesses caused by Agent Orange exposure during the Vietnam War, including retinal damage that could culminate in blindness. As also shown, Albert has been debilitated by the stresses of working as a debt collector, losing the family’s home to Hurricane Katrina, and subsequently losing his job and his VA disability benefits after filing for Chapter 13 bankruptcy, leading to a three- to five-year debt-repayment plan—notorious for being nearly impossible to complete—during which debtors must live on a fixed income.

The scene to which Albert objects immediately precedes his reaction scene, and actually opens the film. Crimson light fills the screen while Jordan, along with their mother and sister, coax Albert to drink a glass of milk. Lord describes the images and text that appear onscreen in an even-toned voice-over. The descriptions both add to and subtract from what I perceive as a sighted and hearing person. “A reddish pink frame fills the screen, pulsing from dark to bright.” “Throughout the film, yellow text designates someone speaking off camera; white text designates someone speaking on camera.”

In its presentation and what it absents, this scene foregrounds access as a practice of mutual care and dependency. Participants’ control over their own image has been a central concern in documentary, but Lord removes access relations from propertied logics and holds them in trust.

Lord hears Albert’s objection to his portrayal as weak or vulnerable as a statement of his access needs—that is, as accommodations and adjustments that Albert will require in order to participate fully in the film and the world in which it will circulate. Lord responds to these needs by placing their finger over the lens to occlude Albert’s image, producing an image that looks, to me, like objects passing before my closed eyelids on a sunny day. In verbally describing that occlusion and by captioning the description, Lord anticipates Albert’s future access needs were he to lose his vision, as well as those of blind and deaf viewers who might share the political experience of disability. In this way, Lord links Albert’s disavowal of his disability experience to the very same ableist forces that justify neglecting or segregating the needs of audiences with sensory differences.

I have come to think of Lord’s ethical and formal commitments to “baked-in” access as constituting a refusal of the austerity thinking that leads too many documentarians to conceive of participants in their films as liabilities that threaten their access to resources that can be mined and refined as documentary content. Liability concerns lurk, unstated, when filmmakers admit backstage negotiations and relational dynamics into the cinematic diegesis after the fact. In Goodbye CP (1972), for instance, Hara Kazuo instigates Yokota Hiroshi and other activists with cerebral palsy to “throw away their wheelchairs and take to the streets.” Hara then keeps his camera running during a fight in which Yokota’s wife angrily objects to his reckless staging of access performances at her disabled husband’s expense as well as his shameless efforts to capture their private marital discord. When asked to account for his decision, Hara has stated that Yokota’s wife granted him permission to use this footage in the film despite her disapproval, noting that Yokota has defended the film as a “collaboration.” ³

Lord’s insistence on access as a primary cinematic principle prompts an understanding of such ex post facto efforts as retrospective access accommodations, or retrofits—makeshift structures devised by documentarians to compensate for the harm they have caused and to protect their investment. Shared Resources is an exercise in moving away from the adversarial and conservative underpinnings of legal and, by extension, documentary interpretations of access as risk mitigation into a more powerful framework of accountability.

The implications of such a shift for documentary practice become apparent during Lord’s interview with Albert about his work as a debt collector and his own subsequent bankruptcy—a procedure that exposed the tenuousness of his middle-class status. Albert responds to Lord’s queries in the guise of a spokesperson for the very system that left him with no social safety net when he was fired. Good lenders, Albert reasons, have a responsibility toward their borrowers, and good borrowers owe it to their creditors and to themselves to make good on their debt. Albert claims that he does not regret the massive loans he borrowed for Lord’s college tuition, believing this to be his responsibility as Lord’s parent, which he has now fulfilled.

Reflecting on Albert’s internalization of the neoliberal logic of risk management, Lord muses that in documentary, too, it has become commonplace for filmmakers to secure access by outsourcing risk to their “interview subjects.” Indeed, this is the logic behind the “release” form that subjects sign to release filmmakers from liability. Lord muses:

The process of interviewing, which is also involved in applying for jobs, schools, and loans, most closely resembles the sense of “applying” that means “to join or adhere,” like one might apply glue. The interview sticks with the person being interviewed. Though it can always be recut and recombined, the filming creates a record. The record produces a kind of evidence that the person may later be held to. This might be called their story, but it might as likely be called their account.

Prior to and during the interview with Albert, Lord “cuts back in” scenes from his daily life that reveal the debilitating and ableist logic of this accounting convention (itself a type of “audit”) and reassert the structural violence that Albert elides in his account. Albert is shown driving to the bank from which he was fired to deposit checks and use the coin machine, no less than four times. He visits an ophthalmologist who tells him the only way to control his retinal damage is to get his diabetes under control. At home, as Jordan’s mother, Deborah, cooks soup with canned vegetables—a survival strategy for living through bankruptcy learned from her working-class childhood—Jordan’s sister Ashley remarks that their father’s health issues would benefit from a fresh-food diet. If Albert’s account suggests that individuals are responsible for their own recovery, both corporeal and financial, then these inserted scenes suggest that recovery is less a return to a prior pristine state than a series of painful detours and backslides through the wormhole of crip time. They stick with the listener, demanding a different kind of accountability, another type of social glue.

Lord answers that demand by rethinking documentary access beyond artificial scarcity and gatekeeping; instead, they propose a queer and crip practice of sharing resources and building social capacities. Their insistence on burned-in access performs the fundamentally speculative, improvisatory, incomplete, and necessary work of caring and support that has been termed “access intimacy” by disability-justice activist and writer Mia Mingus:

[A]ccess shifts from being an individual responsibility to a collective responsibility … from being silencing to freeing; from being isolating to connecting; from hidden and invisible to visible; from burdensome to valuable; from a resentful obligation to an opportunity; from shameful to powerful; from ridged to creative. It’s the “good” kind of access, the moments when we are pleasantly surprised and feel seen. It is a way of doing access that transforms both our “today” and our “tomorrow.” ⁴

Lord’s commitment to access intimacy rewires a long cinematic tradition of austerity thinking that has framed linguistic and sensory access features as burdensome additions that distract or subtract from aesthetic experience. The widespread acceptance of subtitles and dubbing in numerous national contexts, as well as data on elective subtitle use for enhanced narrative comprehension and a robust body of scholarly work framing subtitles and dubbing as interpretive arts with untranslatability at their core, have done little to budge the mainstream perception of linguistic access as a degradation of the “original” cinematic text. ⁵ The industrial history of sensory access for audiovisual media has likewise been guided since its inception by a mandate of invisibility that reinforces the social erasure of disabled people and the unmarked, unquestioned norm of a sighted and hearing audience.

Following an all-too-brief broadcast experiment with open captions, audio descriptions and captions have largely been segregated on an optional track, placating able-bodied investments in cinema that would be “spoiled” by translation. ⁶ To this day, industry norms for captioning and audio description preach the values of inconspicuousness, discretion, and seamless integration. Style guides consist largely of design and pacing recommendations for retrofitting captions and verbal description to the film or television program in the available space-time between scene changes and dialogue in order to minimize asynchrony and maximize narrative comprehension. Best practices advise audio describers and captioners to be neutral, accurate, and objective, and to avoid interpretation, commentary, or graphic or technical vocabulary that calls attention to itself. ⁷

Users of these services have lamented the mystification, misdirection, and shrinking of cinematic experience under the neutrality imperative. Blind disability scholar Georgina Kleege has noted, for instance, how the withholding of information about nudity can, in addition to infantilizing blind audiences, consign them to imagining narrative information made explicit to the sighted viewer. ⁸

Lord has stated that their intention in Shared Resources was to work with access as the “material and form” of their creative practice. Lord shares this investment with a number of other artists who have used access features to experiment with crip aesthetics of complaint, displacement, substitution, overlay, and ventriloquy. In the short film Artist Christine Sun Kim Rewrites Closed Captions (2020), Deaf artist Christine Sun Kim explains how the translation of music as a single word or symbol depicting a musical note impoverishes d/Deaf spectators, and suggests synesthetic alternatives: a tiled floor is captioned as “the sound of shampoo scent floating among the fog.” In her Spoken on My Behalf (2020), Kim is shown signing while sarcastic captions ventriloquize interpreters and hearing people who have voluntarily or involuntarily “voiced” the artist. In Captioned-Channel Surfing (2017), Liza Sylvestre captions TV programs captured while channel surfing without captions, conjuring a parallel but overlooked spectatorial experience reliant on visual observations, lip-reading, body language, and prosthetics like hearing aids and cochlear implants. ⁹

Other artists employ an aesthetic of displacement and substitution to emphasize the positive benefits of exclusion from ableist cultural spaces, widely referred to in disability communities as “JOMO” (the joy of missing out). McArthur’s audio piece PARA-SITES (2018) visually describes the gallery and artworks in their MoMA exhibition, in addition to off-site and imaginary spaces.¹⁰ Amalle Dublon and Zavitsanos likewise omit an image needing description in their minimalist video April 4, 1980 (2018), in which open-captioned text is audio-described by Zavitsanos’s voice, slowed down to fit the speed of caption reading rather than matching the speed of captions to the soundtrack.

Lord’s Shared Resources contributes an aesthetic of redundancy to this emergent lexicon of access intimacy. What appears onscreen is told, and what is spoken or sounded is shown. The look, sound, duration, and feel of the film are rejoinders to the documentary dictum “Show don’t tell.” As a theory of narrative economy, “Show don’t tell” celebrates inaccessibility. The viewer (presumed to be seeing and hearing) is independently responsible for finding their way into the narrative through elegantly disguised and sutured points of entry. If telling reveals and doubles these openings, then Lord doubles down on redundancy as the lowest and most obvious denominator of access.

Audio description, even more than captioning, is often resented and avoided by most filmmakers. It is expensive and requires advance consideration and creative compromise in the form of a well-ventilated soundtrack; too much sound, music, and speech makes it difficult to accommodate verbal description, resulting in acoustic congestion. Lord turns this constraint into an opportunity to explore how access features can guide not only the aesthetic of the film, but also its narratological movement. The basic principle of audio description is “Say what you see.” Where best practices and style guides see a covenant of fidelity to an original text (premised on able-bodied assumptions), Lord employs a crip philosophy of ekphrasis, a fount of narratorial invention and means of channeling sensory attention that activates what is not shown. ¹¹

Audio description may appear to emanate as though from an objective, authorless source, but, as Kleege has noted, it is often multiply authored. Lord’s process honors its collaborative and subjective character. For every scene that appears in the film, Lord asks Deborah, and occasionally Ashley, to watch the footage with and without sound and to record descriptions incorporating three different registers: (1) how they reacted to seeing the footage; (2) how they would describe it to someone who could not see; and (3) what was left out of the frame but important to know. ¹²

Lord then edits these three types of responses into one unified voice-over track, supplementing it with their own descriptions and commentary. Deborah’s is the voice that the audience hears most frequently, along with Lord’s. Lord’s commentary and descriptions (neutrally intoned in the simple present tense) have the effect of moving out beyond the frame to include analyses of abstract and invisible structures and infrastructures (the credit economy, internalized ableism). As a combined effect of her willingness (and perhaps, need) to open up, her intimate and emotional delivery, and use of the present continuous tense, Deborah’s descriptions sound like an internal monologue that takes the audience inside the film and illustrates how the structures illuminated by Lord are felt and lived.

As a sighted and hearing listener, I experienced this collective description-as-narration as what Zavitsanos might call a “backstage pass” to a different dimension of the film than the one unfolding in the foreground. McArthur writes: “Figuring out together with a person or people who are providing access often means running temporary interference to rules of security, business, and customer service that mediate kitchens, break rooms, and storage areas as work sites. Tina [Zavitsanos]’s called this the backstage pass.” ¹³ Creating access, as Zavitsanos and McArthur note, entails developing relationships with those who work backstage. Access work—that invisible and inaudible “relay between people” that literally and metaphorically props up Albert and (the story of) his recovery—takes place behind the scenes.

Shared Resources transpires in these waiting rooms of life, folding the tedium and repetition of access work into its narrative rhythms. In the foreground, the story of Albert’s recovery marches along, unsteadily but surely. Meanwhile, Deborah, Lord, and Ashley place telephone calls to medical-insurance agents, wait in the bank parking lot as Albert deposits checks, and wait on Albert as he convalesces at home. When responding to their own images, they transport the listener to off-site and imaginary spaces of access work. To me, it is incredibly moving to hear Deborah’s own perception of her access fatigue grow and evolve through the act of description. This is how she describes a different view of the occluded scene that opens the film, and recurs throughout like a fever dream: “My face is telling the story of the stress I feel, there is fear all over my face, because of my husband who I depend on so much. I felt it but you see it.” Her words swell the scene in a chorus of concern, worry, and love that tells us what it feels like to provide care and support—that is, to provide access.

Kathryn Bond Stockton has described “growing sideways” as a queer orientation with regard to temporal and relational destinations normalized by the compulsory heterosexuality of “growing up.” Sideways growth, she writes, is “a motion, an emotion, and a growth, even though, from certain conventional angles, it may look like a way of going nowhere.” ¹⁴  Shared Resources grows sideways by cultivating a crip kind of love for access intimacy.

If I were to describe my own auditory activity during Lord’s film, I might say: I am listening sideways, to the workaround, to what must happen despite and because of all that ableism makes unthinkable and nonsensical. Listening sideways is the opposite of listening for the gist. It means listening for the props and supports that have been cut out or kicked away. It means falling in love with the thickness and slowdown that comes, in Dublon’s words, from “becom[ing] involved with the means of getting around, or communicating, and the poetry or choreography of that means.” ¹⁵ It means developing an ear for the unaudited and unaccounted love work of collective care that props up documentary stories.

Access has multiple meanings and legacies. The modern, legalistic meaning of access, understood as permission or ability to enter, has superseded an older, medieval definition in which access refers to a fever or altered state. ¹⁶ I learned this from After … After … (Access), the film that Lord made in 2018, which documents the filmmaker’s preparation for open-heart surgery and concludes with cell-phone footage shot inside the hospital, obtained surreptitiously after Lord’s months-long petition to film their care networks during their stay was denied. Shared Resources invokes this older concept of access, understood in the crip sense of an attack or breach. Inequities of access, Lord shows, cannot be solved by retrofits that seamlessly integrate people with disabilities without displacing majoritarian bodies or substantially changing the social structure.

What Mia Mingus calls a “‘good’ kind of access” (one that transforms both present and future) is necessarily an act of creative destruction that entails rebuilding new forms, relationships, and systems of accountability in the social wreckage of the old. Lord requires audiences to experience sensory access not as a supplement but as an occlusion—a crip curb cut that bends listening toward an apprehension of disability as the ground state of life, a social world braced by the values of interdependence and shared responsibility. This is why it is so important to build the political capacity and muscle memory for the type of listening that Shared Resources models and practices: a listening whose difficulty is in direct proportion to its collective gains. This is the paradigm shift at stake in listening in crip time.

Acknowledgement

This essay was researched and written during a yearlong residency at the Center for Media, Culture and History and the Center for Disability Studies at New York University with the generous support of a Frederick Burkhardt Fellowship from the American Council of Learned Societies. I am grateful for the warm embrace of my hosts Faye Ginsburg and Mara Mills, and for the fellowship and brilliance of Jordan Lord and Neta Alexander.

Notes

1. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 27; also see Ellen Samuels, “Six Ways of Looking at Crip Time,” Disability Studies Quarterly 37, no. 3 (2017), https://dsq-sds.org/article/view/5824/4684/. Kafer and Samuels describe crip time as a departure not only from normative life stages and linear progressive time, but also from the ableist values of productivity, self-sufficiency, independence, and achievement.
2. Irina Leimbacher, “Hearing Voice(s): Experiments with Documentary Listening.” Discourse 39, no. 3 (Fall 2017): 293.
3. Hara Kazuo, Camera Obtrusa: The Action Documentaries of Hara Kazuo, trans. Pat Noonan and Takuo Yasuda (New York: Kaya Press, 2009), 91–92.
4. Mia Mingus, “Access Intimacy, Interdependence and Disability Justice,” Leaving Evidence (blog), April 12, 2017, https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.
5. On subtitles, see Abé Markus Nornes, “For an Abusive Subtitling,” Film Quarterly 52, no. 3 (Spring 1999): 17–34; and Atom Egoyan and Ian Balfour, eds., Subtitles: On the Foreignness of Film (Cambridge, MA: MIT Press, 2004); and on dubbing, see Tom Whittaker and Sarah Wright, eds., Locating the Voice in Film: Critical Approaches and Global Practices (Oxford: Oxford University Press, 2017).
6. Today, closed captions (which exist on a separate file and are usually identified by a [CC] symbol in the corner of the screen that allows the viewer to switch them on or off) are the most common type of captions used by major broadcasters and video streaming services. See Emily Watlington, “The Radical Accessibility of Video Art (For Hearing People),” Future Anterior 16, no. 1 (Summer 2019): 117. Also see the essay by Neta Alexander and Mara Mills in this dossier.
7. See Sean Zdenek, “Which Sounds Are Significant? Towards a Rhetoric of Closed Captioning,” Disability Studies Quarterly 31, no. 3 (2011): https://dsq-sds.org/article/view/1667/1604; and Georgina Kleege, “Audio Description Described: Current Standards, Future Innovations, Larger Implications,” in “Description across Disciplines,” special issue, Representations, no. 135 (Summer 2016): 92–95.
8. Kleege, “Audio Description Described,” 96–97.
9. See Emily Watlington, “Critical Creative Corrective Cacophonous Comical: Closed Captions,” Mousse, no. 68 (2019), http://moussemagazine.it/product/mousse-68/.
10. 10.
11. Amalle Dublon and Constantina Zavitsanos, “Dependency and Improvisation: A Conversation with Park McArthur,” in special issue “Disability + Visibility,” ed. Emily Watlington, Art Papers 42, no. 4 (Winter 2018/2019): 52.
12. The ancient art of verbally describing visual material, ekphrasis includes such varied and mixed verbal-visual forms as poems about paintings, film analysis, slide lectures, and videographic criticism. See Mara Mills, “Listening to Images: Audio Description, the Translation Overlay, and Image Retrieval.” The Cine-Files 8 (2015): https://www.thecine-files.com/listening-to-images-audio-description-the-translation-overlay-and-image-retrieval/. Mills proposes that audio description be viewed alongside captioning, fansubbing, voice-over, and “twin-vision” braille/print books as a “translation overlay” practice that adds alternative content to source material by integrating a new track without creating a new work.
13. Jordan Lord, “Shared Resources (Contractual Obligations),” City University of New York School of Arts & Sciences Theses (December 18, 2019), 5.
14. See Dublon and Zavitsanos, “Dependency and Improvisation,” 52.
15. Kathryn Bond Stockton, “Growing Sideways, or Versions of the Queer Child,” in Curiouser: On the Queerness of Children, ed. Steven Bruhm and Natasha Hurley (Minneapolis: University of Minnesota Press, 2004), 311.
16. Dublon and Zavitsanos, “Dependency and Improvisation,” 53.
17. Oxford English Dictionary, http://www.oed.com, s.v. “access.”

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media, Winter 2022

By Slava Greenberg

Our interviewees not only school the audience on their own perspectives and experiences of these movies; they also include detail that speaks directly to other disabled people by using cultural references and insider language, which is often politically incorrect. Unlike Hollywood, then, we assume our “general audience” includes people with disabilities. —Carrie Sandahl (on Code of the Freaks)

Why do we even care about the Oscars? You know, lots of filmmakers are going, “Let’s make our own stuff!” Yeah, well, the industry standard is an Oscar or a Golden Globe. Whether we like it or not, that’s what attracts the attention and the commercial success allowing you to go and make your next thing. Tod Browning wouldn’t have got to make Freaks if he hadn’t had a hit with Frankenstein the year before, right? —Mat Fraser (in Code of the Freaks)

Code of the Freaks (Salome Chasnoff), released in 2020, opens with a clip from the final scene of Freaks, Tod Browning’s infamous pre-Hays Code 1932 film. Freaks has a mythical place within film history and theory, with a cult following as well as widespread critiques from disability studies scholars and activists. Most of the participants in Freaks were people with disabilities. ¹ In fact, about a third of the first anthology on film and disability, Screening Disability: Essays on Cinema and Disability, was dedicated to Tod Browning’s films, especially Freaks, his most controversial work. ²

Freaks follows Hans, a little person working as a circus performer, who falls in love with the nondisabled trapeze artist Cleopatra. Together with her partner, Hercules, she plots to kill Hans after their wedding and inherit his fortune. In what was defined by anthology contributor Sally Chivers as the only classic horror scene in this film, the community of disabled people, learning of her plot, stalk Cleopatra, trap her, melt her feet and hands to look like duck feet, and then tar and feather her torso, turning her into a “chicken lady.” The final scene in Freaks, which is also the opening of Code of the Freaks, explains that the circus’s new exhibit, featuring a transformed Cleopatra, is the result of revenge executed by the tight-knit community of sideshow freaks. The carnival barker exclaims: “Their code is a law unto themselves. Offend one, and you offend them all.” The framing of Code of the Freaks with this scene is essential to its workings. A cowriter on Code, disability scholar and activist Carrie Sandahl, explains:

[T]he Code [i.e., “Offend one, and you offend them all”] … implies that we as filmmakers, our interviewees, and by extension the entire disability community have been offended and that we are enacting the code of the freaks: this documentary is our revenge. Our representational retribution deforms and “enfreaks” those movies that do us harm. The documentary acts as synecdoche for the disability community itself, which, despite a history fractured by institutionalization, isolation, and segregation, has emerged to build a political and cultural movement. ³

Code of the Freaks embraces the crip solidarity in Freaks as a call for action rather than a rant.

Made almost ninety years after Freaks debuted, Code of the Freaks is a documentary featuring thirteen disabled activists, artists, and scholars responding to hundreds of movie clips stereotypically portraying disability. ⁴  Code is a low-budget documentary that boasts no deals with Netflix, has modest production values, and purposely does not include many Hollywood “celebrities,” instead featuring what author and activist Simi Linton has termed the “criperati,” to describe crips who are “intensely interested in disability cultural affairs.” ⁵ Among the thirteen interviewees are the British actor and writer Mat Fraser (perhaps most well known for his performance as Paul the Illustrated Seal in American Horror Story; painter and writer Riva Lehrer; writer Mike Ervin; Candace Coleman, a racial-justice community organizer at Access Living, in Chicago; and Lawrence Carter-Long, a coeditor of and contributor to this dossier and also a cohost of the Turner Classic Movies monthlong film program “The Projected Image: A History of Disability in Film.” ⁶

The documentary juxtaposes sequences detailing some of Hollywood’s most prevalent tropes about disability: little people as magical creatures; nondisabled women tending to paralyzed men; blind men driving cars; deaths by suicide, suggesting a life not worth living; disabled characters inspiring nondisabled people—even “cripface.” ⁷ A particularly favorite trope of mainstream filmmaking is the “cure narrative,” in which the obstacles of disability disappear and the assistive devices are discarded, such as in Monkey Shines (George A. Romero, 1988) and Avatar (James Cameron, 2009). The late Chicago-based playwright, novelist, and longtime disability rights and culture activist Susan Nussbaum, a cowriter on Code of the Freaks (together with Carrie Sandahl and Alyson Patsavas), pointed out that able-bodied actors playing disabled characters who then ascend the Oscar stage to receive their awards also “cure,” with that act, their disabled characters. ⁸  Code of the Freaks includes disabled activists’ observations on the harm these elements cause, alongside humorous commentary on how ridiculously unimaginative they are. ⁹ While dismantling the ableist gaze embedded in these tropes, the documentary is framed around “the code of the freaks”—a concept developed from the film’s complex relationship with Browning’s Freaks and defined as community, solidarity, or grassroots activism by the criperati interviewees.

This relationship begins with the documentary’s very first cautionary slide. Code of the Freaks, like Freaks, opens with a direct address to the audience: “The following contains images from a century’s worth of Hollywood cinema and therefore depicts some nudity, sexual contact, and violence, particularly violence against people with disabilities.” This on-screen text is followed by Freaks’s scene of the carnival barker explaining the code. Yet, this slide also ironically references Browning’s infamous warning at the beginning of Freaks:

Before proceeding with the showing of the following highly unusual attraction, a few words should be said about the amazing subject matter…. They [the freaks] are forced into the most unnatural lives. Therefore, they have built up among themselves a code of ethics to protect them from the barbs of normal people. Their rules are rigidly adhered to and the hurt of one is the hurt of all, the joy of one is the joy of all. The story about to be revealed is a story based on the effect of this code upon their lives…. With humility for many injustices done to such people … we present the most startling horror story of the abnormal and the unwanted.” ¹⁰

While Freaks is ironically used as inspiration in Code of the Freaks, it is also, at the same time, itself “enfreaked” or “abnormalized” by the documentary.

Even before the documentary’s title, Code of the Freaks, appears on-screen, a long sequence of clips from Freaks is juxtaposed with numerous criperati explaining their relationships to the film, while other relevant clips are projected in the background of the “talking heads.” Mat Fraser begins by praising Freaks for its depiction of “radically different disabled people. People like me, people with congenital deformities are in it, and you never see those people on-screen.” To that end, filmmaker Tommy Heffron explains that the wedding-feast scene in which Cleopatra is offered a loving cup to the famous “One of Us” chant holds a promise for a kind future that is not delivered. Fraser concludes his remarks in this opening sequence by declaring that no other Hollywood film comes close to Freaks in capturing this “camaraderie and edgy outsider necessity of collective difference.”

Freaks raises questions such as “Who do you want to be?”; “Who do you belong to?”; “Who is one of us?” With a scene from the film running in the background, activist and media enthusiast Lawrence Carter-Long argues that the villains in Freaks are the nondisabled people, while the freaks are the folks with whom you identify. The audience’s discomfort invoked by Freaks, as disability studies scholar Sally Chivers suggests, is caused by an identification with a person deviating from the norms of the ideal Hollywood body. The film’s horror relies on this discomfort caused by shifting the spectator’s gaze, subject of interest, and sense of identification from the nondisabled body to that of people with disabilities. Chivers’s inevitable conclusion is that the film’s only horror is identification with a body that is different from the Hollywood norms of a normate (to use Rosemarie Garland-Thomson’s term) or extranormate, superabled, ideal body. ¹¹

At the end, Code of the Freaks circles back to Freaks with a sequence presenting notable clips from the film juxtaposed with Carter-Long suggesting that “[w]hat was unique and remains unique about Freaks … eighty years later is that when you watch that film, you have to meet the freaks in the movie on their own terms.” For Mat Fraser, those terms, and “the code of the freaks” itself, sound “like some secret thing you have to untangle and work out to understand. Well, that is real, isn’t it? Because you can’t just arrive at the word ‘freak’ and think you know what it means. It means very complicated, layered, cultural, historical, and contemporary things.”

Through its political and aesthetic techniques, Code of the Freaks shifts attention from the voyeuristic gaze directed at the freaks to the continuous “enfreakment” and code of solidarity that being a member of the disability community offers: offend one, and you offend them all. ¹²

From Criperati Salons to Collective Spectatorship

In addition to the circular narrative of Code of the Freaks revolving around Freaks, the documentary also features the distinctive aesthetic device of projecting archival clips behind the interviewees as they speak. Code of the Freaks thus gives disabled viewers the opportunity to experience the pleasures not merely of being represented, but also of being addressed as insiders to the critique and conversation who are privileged to be in on the joke. It provides a sense of communal spectatorship, including even the ability to time-travel into cinematic history, something far more than simply an indictment (or a rant). Although the featured criperati sit alone on-screen, one by one, in a space invisible to the spectator, they are often edited together as though they constitute a group, with several responding to the same scene or film, offering a sense of a collective conversation. While Code could be misperceived as an educational film aimed at nondisabled viewers, its greater significance lies in the reverse: its potential to offer this type of inclusive experience to its own community of spectators and listeners.

The essential access features that accompany Code of the Freaks when it is screened—those that accommodate deaf and low-vision spectators through audio-description track and open captioning—are but one aspect of a decade-long process devoted to honoring diversity within the disability community. Code of the Freaks began within and for the disability community when Susan Nussbaum teamed up with feminist documentary director Salome Chasnoff to create a salon for discussions about Hollywood’s representation of disability.

These salons invited community members to respond to the movie clips, and the team—including disability studies scholars and activists Carrie Sandahl and Alyson Patsavas, who brought the experience of having taught a large disability and American film class at the University of Illinois at Chicago, as well as independent filmmaker Jerzy Rose—realized over time that “even some of the most egregiously offensive and traumatizing films had moments of value for certain members of our community.” ¹³

Hollywood Shaming Documentaries

Code of the Freaks continues and transforms a forty-year tradition of “Hollywood shaming” documentaries. Such documentaries construct “Hollywood” as a collective archive to historicize the othering of their communities. Films of this kind include documented accounts of Hollywood’s racism, misogyny, homophobia, Islamophobia, sexism, transphobia, ableism, and more. They rely on the cumulative effect of multiple nearly unwatchably offensive clips from a large number of fiction films spanning the years from cinema’s early days to today. Such documentaries may be defined as self-curated archives of the marginalized, preserving the reverse of how Hollywood prefers to see itself. Although these documentaries have evolved over time, their basic structure has remained unchanged: the offended group makes its case by presenting visual evidence, traces its negative impact on the community in question, and demands accountability from mainstream producers as well as their consumers.

This subgenre begins in the eighties with films, such as Black Hollywood: Blaxploitation and Advancing an Independent Black Cinema (Howard Johnson, 1984) and Ethnic Notions (Marlon Riggs, 1986), that explored the issues of US antiblackness. Both investigated the role of Black actors, directors, and audience members, as well as the deep-rooted stereotypes that have fueled antiblack prejudice. Black Hollywood was a television production that focused on the economic aspects of antiblackness in Hollywood, while Ethnic Notions explored the broad scope of racism toward Black Americans in popular culture. In the 1990s and 2000s, The Celluloid Closet (Rob Epstein and Jeffrey Friedman, 1995) and Fabulous! The Story of Queer Cinema (Lisa Ades and Lesli Klainberg, 2006) surveyed Hollywood homophobia and the stereotyping of gay and lesbian people through carefully curated clips. ¹⁴

Since 2000, filmmakers who are Black, Indigenous, and people of color have expanded the documentary protest against Hollywood. Reel Bad Arabs (Jeremy Earp and Sut Jhaly, 2006) explores a long line of degrading images of Arabs; The Slanted Screen (Jeff Adachi, 2006) and Hollywood Chinese (Arthur Dong, 2007) focus on Hollywood depictions of Asian American male characters from films spanning almost a century; the Canadian Reel Injun (Neil Diamond, Catherine Bainbridge, and Jeremiah Hayes, 2009) explores the history of the depiction of Native Americans in Hollywood films. It wasn’t until 2014 that a feminist version of the Hollywood shaming documentary was released, under the title Reel Herstory: The Real Story of Reel Women (Ally Acker), a film that endeavors to correct the notion that women working behind the scenes of motion pictures held peripheral careers. In 2020, the same year as Code of the Freaks, Sam Feder’s Disclosure took up representations of trans and nonbinary people and gained broader recognition, primarily through Netflix’s distribution and advertising. ¹⁵

As these films resist the harmful effects of stereotypical representations by juxtaposing their clips with responses from activists, filmmakers, actors, archivists, and scholars, they are positioned somewhere between educational nonfiction and documentary film. This subgenre has long been known by film and media educators, and those from marginalized communities. However, Code of the Freaks can be said to mark a shift in the evolution of the subgenre from educating the general audience to addressing their own community members as desired, even privileged, spectators. Code of the Freaks does this by focusing on the portrayal of disabled people while also making the film accessible through captioning and audio description. It also addresses intersectionality within the community, in particular critiquing the antiblackness embedded in many ableist representations and vice versa.

This essay uses the anachronistic term “shaming” instead of the more contemporary term “cancel” to describe and define this subgenre. ¹⁶ My intention is to preserve the quality of (guilty) pleasure in these very images and to recognize the oppositional meanings they entail. I also wish to stress that, at the heart of Code of the Freaks, there is something that is the very opposite of canceling: by incorporating materials that may be triggering, it forces audiences to engage with the pain that such materials inflict, rather than to look away. Furthermore, as many of these films demonstrate, the same audiovisuals can impact different members of the same community in different ways; they are more nuanced than positive/negative or celebratory/cancel-worthy representations. Whether shaming, calling out, or even blaming, such documentaries have been aimed at an imaginary general audience and its silent collaboration in the form of spectatorship.

In a sense, collectively, these documentaries put Hollywood on trial for its offenses against a majority of its spectators: women and people of color; Black, Indigenous, disabled, queer, and trans folks. Each of these documentaries drafts an indictment, complete with convincing arguments, compelling archival evidence, reliable expert witnesses, and—most importantly—testimonies from the victims. Because these documentaries lack the judicial authority of a verdict, they use shaming as a tool against the producers and consumers of such oppressive images. Through this strategy, the imagined or desired spectators of the films become jury members and judges—or suspects, defendants, and perpetrators.

A somewhat scolding tone remains a prominent characteristic of the subgenre, although that, too, has shifted with the release of Code of the Freaks, which allows more room for community members’ joy, expressed through what Carrie Sandahl calls “insider language.”

In mixed audiences, different pockets of responses become perceptible and predictable. There may be a group of disabled audience members who snicker at all the insider jokes, making nondisabled audience members aware of their presence. Their laughter decenters assumptions of audience normalcy and homogeneity. ¹⁷

Code of the Freaks has refined the Hollywood shaming documentaries by gradually honing a defiance of the “general audience” paradigm and creating an evolution: the space to acknowledge oppositional as well as intersectional gazes and pleasures.

Films in the “shaming” subgenre usually compile community members’ commentary on and denunciations of degrading images, while providing sociopolitical context alongside the images themselves. Because of the real-life urgency of the social issues that Code of the Freaks sets out to amend, its methods resemble legal indictments against the oppressors and their accomplices. Like other Hollywood shaming documentaries, it also prescribes such critique as an antidote to the archive of audiovisuals that construct oppressive ideologies. Yet Code of the Freaks also acknowledges the transgressive powers and the real pleasures that certain items in the archive—as in Tod Browning’s Freaks—bring to their community members. The style still consists of archival clips from Hollywood films critiqued by expert community members, with the aim of schooling a general audience taking pleasure in consuming questionable images; yet at the same time, it also winks at its community and allies.

The Hollywood shaming subgenre substitutes the notion of “general” with the more precise designation of white, masculine, heterosexual, cisgender, and nondisabled. In doing so, its films are not afraid to alienate spectators by naming them as such. Thus Code is not afraid to call out, shame, or enfreak films for being what Sandahl cleverly termed “All the Same Movie.” ¹⁸ The value of such documentaries does not lie with their representation of “real people” in “real situations.” Nor does it lie with their poetics, aesthetic, or experimental approach to documentary. Rather, it lies with these documentaries’ direct, thorough, and evidence-based indictment of Hollywood.

If the Hollywood fiction films shamed by the documentaries of the subgenre are created for a wide and broad general audience, the Hollywood shaming documentaries tend to struggle to find an audience. The simple aesthetics, straightforward narrative, apparent political agenda, and didactic tone of the subgenre may partially explain its relative marginalization within film and media scholarly discourses and popularity with educators, though big-budget Hollywood will always have the edge. Perhaps the biggest aversion to such films lies in the fact that they are most often used in classrooms, community events, and other spaces relying on the captivity of their audiences. The late Brian Winston explored the long-overdue question of the audience in the documentary canon that emerged in the late 1920s and 1930s. He suggests three types of audiences for factual films, with the third being closest to the majority of spectators in the Hollywood shaming subgenre:

[A] third audience … [is] to be found in schools, universities, and training facilities. Spectators watch much of the same materials as did the second audience [factual-film enthusiasts], but they were distinct from it (and from cinema spectators) in that they had no choice in the matter of attendance. Some independent producers and companies were able to sustain themselves making film documentaries and other factual visual materials solely for this audience. ¹⁹

For this reason, the still-captive audiences where Hollywood shaming documentaries are likely shown are rarely regarded with the honorable titles of “documentary film buffs,” “cinephiles,” or “culturati.” The films’ aesthetic, narratological, and political choices often get written off as “important” yet simplistic “talking heads,” manifestational and overly enthusiastic. Yet the subgenre has prevailed, perhaps because the power of Hollywood’s representations continues to cause harm.

Enacting the Code of the Freaks

During the lockdowns of 2020, hundreds of people attended online screenings and Q&As for Code of the Freaks. ²⁰ Before watching it, I wrongly thought it would be “all the same movie,” shaming Hollywood in a talking-heads style and schooling the normative-bodied/normative-minded/neurotypical/hearing/sighted audience members—and thus not meant for me. It took only ten minutes of watching Code of the Freaks (and forty minutes of Disclosure)—and the accumulation of testimonies countering, opposing, and objecting to the derogatory clips from the fiction films—for me to realize that these films were not merely schooling general audiences but also addressing me, as a trans crip spectator, very directly. A renewed sense of safety is a direct result of the testimonies by diverse disabled (and trans) folks, owing not only to their responding to a range of clips, but to their actively recontextualizing them and resisting their original use, manifesting a visual and verbal opposition to Hollywood’s toxic ableism.

Code of the Freaks also goes further: it offers insight into the intersectional logic missing from the Hollywood shaming subgenre by juxtaposing recurring tropes to the point of audiovisual tediousness. In Code of the Freaks, Sandahl suggests, the montaged tropes are overdetermined not only by impairment type (wheelchair users, facial difference, blindness, intellectual disability, mental illness) but also by their whiteness: “In a sea of disability whiteness, a montage of black men with disabilities who teach white communities about racism appears as a stark contrast, a toxic intersection of ableism and racism prettied up as consciousness raising.” ²¹

One of Code of the Freaks’s prominent contributions to the evolution of the Hollywood shaming subgenre is its unveiling of the roots of antiblackness interwoven with stereotypes of disability in many of these films. Focusing on Radio (Michael Tollin, 2003), disability studies scholar (and Code cowriter) Alyson Patsavas explains that it portrays a sweet and innocent character who is “so good that he manages to teach the [residents of a] white town how racist they are.”

Aligning disability and race, Sandahl adds that “the more insidious message that the film leaves is that Radio [Cuba Gooding Jr.] always needs to be monitored. Not only because he’s intellectually disabled, but because he’s black and needs to be protected from his own behaviors. Because he’s not able to understand that he’s at risk as a Black man.” Over clips of the same kind of character played by the same actor in Men of Honor (George Tillman Jr., 2000), advocate Candace Coleman concludes:

Because we live in a society that isn’t equally accessible and if it is accessible it’s more geared towards people who have money, you don’t see a lot of diversity in disability. And so when writers or characters in movies portray this isolation of maybe one Black character being saved by a white character, I think it’s speaking to the inaccessibility of the world that we live in, but I also think it isn’t giving power to the fact that we can be in community, we can heal ourselves.

Looking at the historical data, Tsehaye Hébert, interviewed in the documentary, finds an unbelievable predominance of Black men and manhood being portrayed through disabled characters—such as in To Kill a Mockingbird (Robert Mulligan, 1962)—that continued to give “the American public a character who was more palatable, more sympathetic, and, I hesitate to use the word ‘neutered,’ but it was a way of neutering the Black male character on-screen.”

As the junior offspring of a subgenre born in such key historical works as Black Hollywood and Ethnic Notions, both released long before the Black Lives Matter protests that followed the murder of George Floyd, Code of the Freaks insists on unpacking the antiblack roots tied to ableism—and vice versa. Moving from the complicated cultural and historical meanings of the word “freak” to the words of “the code,” the documentary ends with Susan Nussbaum’s foundational insight:

[T]he operative word is “code,” not “freaks,” and it means community. And when you have community and disabled people, particularly activists really lean on each other…. [Y]ou have a sense that people have your back. Disabled people have your back. And in the movie Freaks, of course you see that.

Enacting the code, as elucidated by Code of the Freaks, requires identifying the offenders and demanding accountability for the pain inflicted on those most wronged within the community. The code is solidarity.

Code of the Freaks seeks not only the criperati’s political critiques of past films, but also their insights into crip futurities, their visions of films that will celebrate crip lived experiences and accommodate disabled people’s desires. After exploring tropes of pity, inspiration, institutionalization, and death as narratological cures, even a sequence critiquing disappointing sex scenes in Hollywood films, Code of the Freaks ends by turning to the chorus of criperati who offer their desired crip films. ²² Writer and performer Tekki Lomnicki hopes to see a movie where two disabled characters are in love and have incredible sex with each other, with some intrigue (like three-ways, murder, even a spy who hides things in their wheelchair). Lehrer wishes for a movie featuring a character that experiences real vulnerability and for the film to explore that feeling more honestly and with more edge than usual. Anything but the same movie, again, they conclude. The code is accommodating crip futurities. The code is “Nothing without Us.”²³

Notes

1. Sally Chivers, “The Horror of Becoming ‘One of Us’: Tod Browning’s Freaks and Disability,” in Screening Disability: Essays on Cinema and Disability, ed. Christopher R. Smit and Anthony Enns (Lanham, MD: University Press of America, 2001), 58.
2. Christopher R. Smit and Anthony Enns, eds., Screening Disability: Essays on Cinema and Disability (Lanham, MD: University Press of America, 2001). The first epigraph in this essay is from Carrie Sandahl, “It’s All the Same Movie: Making Code of the Freaks,” JCMS: Journal of Cinema and Media Studies 58, no. 4 (Summer 2019): 148.
3. Sandahl, “It’s All the Same Movie,” 146.
4. A few exemplary clips are from The Cabinet of Dr. Caligari (Robert Wiene, 1920), Snow White and the Seven Dwarfs (William Cottrell, David Hand, and Wilfred Jackson, 1937), Dr. No (Terence Young, 1962), The Elephant Man (David Lynch, 1980), Rain Man (Barry Levinson, 1988), There’s Something about Mary (Bobby Farrelly and Peter Farrelly, 1998), The Green Mile (Frank Darabont, 1999), Million Dollar Baby (Clint Eastwood, 2004), and The Dark Knight (Christopher Nolan, 2008).
5. Simi Linton, “Foreword: Cultural Territories of Disability,” in Screening Disability: Essays on Cinema and Disability, ed. Christopher R. Smit and Anthony Enns (Lanham, MD: University Press of America, 2001), 52.
6. See https://www.youtube.com/watch?v=m3Q_EitGzp0.
7. For an explanation of the term “cripface” as “an able-bodied person faking disability,” see Sally Chivers, “Still Julianne: Projecting Dementia on the Silvering Screen,” in The Routledge Companion to Disability and Media, ed. Katie Ellis, Gerard Goggin, Beth Haller, and Rosemary Curtis (New York: Routledge, 2019).
8. See, for example, Daniel Day-Lewis in My Left Foot (Jim Sheridan, 1989), Patty Duke in The Miracle Worker (Arthur Penn, 1962), Cliff Robertson in Charly (Ralph Nelson, 1968), Dustin Hoffman in Rain Man, Al Pacino in Scent of a Woman (Martin Brest, 1992), Tom Hanks in Forrest Gump (Robert Zemeckis, 1994), and Geoffrey Rush in Shine (Scott Hicks, 1996).
9. The trope that is negated most thoroughly in Code of the Freaks is the inspiration narrative, also called “inspiration porn” by the late Australian disability activist Stella Young. The main sequence begins with the inspiration scene from Radio (Michael Tollin, 2003), discussed later in this essay, followed by the scholar and Code cowriter Alyson Patsavas, explaining: “When disability appears in a story, it always serves a function. And often that function is one of inspiration…. Where the nondisabled character is inspired to be a better person.” Carrie Sandahl explains that The Soloist (Joe Wright, 2009) humanizes the disabled Black character, Ayers, through his relationship with Lopez, who is depicted as a sensitive white man. Writer and performer Tekki Lomnicki suggests that the inspirational tropes originate in cinematic representations of Hellen Keller, and particularly in The Miracle Worker. Performer Crom Saunders points to the gibberish sign language Keller’s teacher, Anne Sullivan (Anne Bancroft), uses, aiding in the film’s disrespect of ASL. Writer Tsehaye Hébert sees the inspiration sequence from a different point of view: while she wasn’t inspired by it, she did find the actress’s performance to be extraordinary.
10. Opening credit text of Freaks; italics added.
11. Chivers, “The Horror of Becoming ‘One of Us.’”
12. The term “enfreakment” was coined by disability scholar Rosemarie Garland-Thomson in her influential book Freakery: Cultural Spectacles of the Ordinary Body (New York: New York University Press, 1996).
13. Sandahl, “It’s All the Same Movie,” 147.
14. While trans and bi representations appear in the films that the documentary addresses, both identities are disregarded and left unexamined.
15. It could, however, be argued that the support for Disclosure was later used by Netflix to pinkwash Dave Chappelle’s transphobia.
16. The main distinction here is that the callouts in cancel culture tend to boycott, conceal, and shun the offensive person, corporation, or artifact, while in shaming culture the goal is to amplify the visibility of the wrongdoing by publicly drawing attention to the wrongdoer.
17. Sandahl, “It’s All the Same Movie,” 148.
18. Sandahl, 148. See the first epigraph in this essay.
19. Brian Winston, “The Marginal Spectator,” in A Companion to Documentary Film History, ed. Joshua Malitsky (Hoboken, NJ: Wiley-Blackwell, 2021), 423–24.
20. An early version of this essay was first delivered as an introduction to the Q&A at a screening of Code of the Freaks, with Carrie Sandahl and Alyson Patsavas, that was organized by Nili Broyer of the Disability Studies Center at the Hebrew University of Jerusalem. I also introduced Sandahl following a screening of the film for the students and faculty of the USC School of Cinematic Arts.
21. Sandahl, “It’s All the Same Movie,” 149.
22. These tropes are often portrayed as an act of a charity on the part of the nondisabled character toward the disabled one.
23. Lawrence Carter-Long coined this rephrasing of the long-standing disability slogan “Nothing about Us without Us.”

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media, Winter 2022

By Mara Mills and Neta Alexander

Captions are seemingly everywhere in the new world of remote work and pleasure. In the last decade, largely as a result of advocacy by the National Association of the Deaf (NAD), captions have moved from such sites as the television converter box, the personal device at select movie theaters (like the Rear Window captioning system), or the temporary screen mounted beside a theater stage at “special” performances into a nearly ubiquitous option on digital screens. In the United States, the Twenty-First Century Communications and Video Accessibility Act of 2010 (CVAA) ensured that digital interfaces and streaming protocols, from digital TV to Internet video on laptops and smartphones, can display closed captions; Internet distributors were required to provide closed captioning for many categories of video starting in 2012. ¹ Another spur was a lawsuit, National Association of the Deaf v. Netflix, filed in 2010 and judged in favor of the NAD by the US District Court for the District of Massachusetts in 2012, arguing that the Americans with Disabilities Act (ADA) applies to online businesses. ²

At the same time, the proliferation of user-generated video across online platforms escaped FCC regulation, creating new obstacles for deaf and hard-of-hearing viewers. Although YouTube made human captioning possible in 2008 and machine captioning through the Google Voice algorithm in 2009, the former was rare and the latter was highly inaccurate; most other social media companies followed far behind. The massive turn to videoconferencing during the COVID-19 pandemic placed new pressure on platforms like Zoom to offer automated captioning, actualizing the possibility for accessible remote work that disability activists have demanded for years. ³ AI-generated captions, imperfect but much improved, are now widely available across videoconferencing and social media platforms, including Zoom’s partnership with Otter.ai in 2020 and TikTok’s introduction of auto captions in 2021. Increased familiarity with captions has fed demand to such an extent that AMC Theatres announced in 2021 that they would regularly include open captions (which are “burned in,” not optional) at some screenings.

With new digital tools and rising attention, captioning has also become a medium in its own right. Captions are a defining feature in the work of Carolyn Lazard and others in the “New Disability Arts” movement—a phrase that marks the current “swell” of disability art while acknowledging the long history of work by disabled artists. ⁴ Lazard is a Philadelphia-based filmmaker, curator, writer, performer, and organizer who employs and reinvents captions across video, performance, and installation art, often in collaboration or conversation with other disability artists. Lazard’s works have been exhibited in the Whitney Biennial, the Venice Biennale, Berlin’s Hamburger Bahnhof, and dozens of museums and galleries around the world, reshaping the discourse around captioning, living and working with chronic illness, and resisting the capitalist pursuit of endless productivity and formal displays of “normate ability.”⁵

Captioning is so prevalent in New Disability Arts that entire exhibitions have been organized around it. In 2021, Activating Captions, at the Argos Centre for Audiovisual Arts in Brussels, curated by deaf artist Christine Sun Kim with Niels van Tomme, featured works by Lazard, Jordan Lord, Alison O’Daniel, Shannon Finnegan, Park McArthur, Constantina Zavitsanos, and others who employ captions as medium rather than accessibility add-on. ⁶

These works range from poetically captioned video to “captions” on billboards to descriptions of city sounds written on the windows of the Argos building. ⁷ Set far afield from its televisual origins, captioning in disability art can take place anywhere. Freed from its status as a device for “mere” transcription of preexisting sound, this type of captioning now often references conjectural sound or acts as a spur to thought and performance. In disability art, captioning—whether literal or figurative, even calling the use of any text “captioning”—signifies disability and disability aesthetics, to use Tobin Siebers’s term, as opposed to “inclusion.” ⁸

Most discussions of captioning begin and end with access: what elements of a soundtrack to render into text, the best pace for reading on-screen, or, on platforms like TikTok, the aesthetics of font and text positioning. Unlike subtitles, which translate dialogue from one language to another, captions transcribe dialogue as well as information about sound effects and musical scores. One of Lazard’s better-known video works, A Recipe for Disaster (2018), starkly counterposes traditional open captioning with captions used as compositional tools. Taking an episode from 1972 of Julia Child’s cooking show The French Chef (PBS, 1962–73)—one of the first programs to be broadcast with open captions in the United States—Lazard adds their own verbal description of on-screen images as an audio track along with vertically scrolling text that covers the screen in yellow “captions” read aloud by their frequent collaborator, Constantina Zavitsanos. This narrated text (or transcribed narration) contrasts access with disability art as Zavitsanos reads:

A work made from the conditions of debility or difference, not translated for debility or difference…. Not an accommodation, where we have to be grateful for getting to join the party. Well your party sucks…. An infrastructure of segregation.

Lazard’s text also emphasizes the elemental materiality of captions as media, spelling out: “3 ingredients. Eggs. Salt. Butter. 3 materials. Image. Sound. Text.” At the same time, the cacophony of overlaid text and voices in the work quashes the assumption of transparent access that usually attends captioning.

Some captioning in New Disability Arts engages with the approach that Deaf theater director Jenny Sealey has termed “the aesthetics of access.” ⁹ Here, access tools and practices are creatively employed and integral to artworks from video to wall text. Other works refer less (or not at all) to access, using captioning not as a tool that points to another medium but as a technique in itself that centers artist, audience, or disability community. Intimacy, justice, or eventfulness supplant access as the intention of the captioning. Much of this work is minimalist, comprising mostly, or even entirely, captions or text designated as “captions”—in other words, disability text.

As a formal element of disability minimalism, captions become tools for composition. In their video, text, and installation pieces, Lazard has further advanced a style of captions that function as “scores”—open-ended scripts inviting audience members to activate the work, their bodies, and each other. As performance scores, these captions instruct or otherwise engage with readers/audiences, requesting their participation in the art-making process. Several recent projects have brought what Lazard calls a “Black krip ethic or methodology” to their captioning: scores addressing Black and brown audiences, captions that combine “access and opacity” and “visibility and invisibility.” ¹⁰

Support Systems and Collectives

Lazard has been singled out for accolades such as the inaugural Disability Futures Fellowship (funded by the Ford and Mellon Foundations) and the Phaidon juried list of artists making up “art’s next generation,” but their work is best understood within the ambit of the collectives and friendships that serve as their support systems. Their abundant collaborations have remade art space, art time, and art economies. Their insistence on recognizing the infrastructure of care, collaborative labor, and political economy that are the scaffolding for an artwork or event is a crucial aspect of their practice and of disability politics more generally.

In 2019, Lazard co-organized a three-day festival, titled “I wanna be with you everywhere,” with Zavitsanos, McArthur, Amalle Dublon, Jerron Herman, and Alice Sheppard, in conjunction with Performance Space New York, the Whitney Museum, and the political-arts organization Arika. This festival brought disability art and access techniques to wide attention while at heart remaining a disability party and “crip meet-up.” ¹¹ Three evenings of dance, performance, poetry readings, and film screenings unfolded with abundant time and space for hanging out. The spirit was avowedly opposed to “individuation and inclusion,” emphasizing instead disability community and “common capacity” for making access happen. ¹² Travel funds for attendees, quiet space, and a “relaxed environment” approach to audience etiquette were combined with provisions for ASL, audio description. and captioning. ¹³ That same year, Lazard produced “Accessibility in the Arts: A Promise and a Practice,” an online resource guide for smaller arts organizations, grounded in the intersectional principles of disability justice as articulated by queer and trans activists of color. ¹⁴ Lazard’s art practice has thus penetrated and restructured the organizations it encounters, establishing crip milieus, however transient.

Early in their career, Lazard cofounded Canaries, a group of chronically ill cis and trans women and nonbinary people that functioned as an art collective as well as a peer knowledge-sharing and support group. In a recent interview for Frieze, Lazard described the nature of that collective work:

Canaries is still ongoing as a private listserv, but it no longer functions as a public-facing art collective. We made art together for a few years, and it was an amazing way to think through collaborative and collective labor. As a group of chronically ill people, each of us was moving through these cycles of wellness and unwellness, which meant we weren’t always able to work. Oftentimes, when one person didn’t feel well enough to work, another person would be able to. It was about maintaining this hydraulic system of labor that comes from collectivity. ¹⁵

In this “hydraulic system” of collective art making, structures for communal pacing are crucial: in order to ensure continuity one can, when faced with pain, fatigue, and uncertainty, slow down while another speeds up.

Lazard has consorted for years with Constantina (Tina) Zavitsanos and Park McArthur, two New York–area disability artists known for their work in installation, performance, text, and sound. Much of Lazard’s, Zavitsanos’s, and McArthur’s work with captioning and scores (including the strategy of turning captions into scores) has emerged from ongoing conversations among them. In 2016, a residency at Room & Board—an apartment in Brooklyn whose tenants invited artists to stay with them for a month—led to Lazard’s Support System (for Park, Tina, and Bob), a durational performance that references the legacy of collectives and care work as constituting disability art itself, not just a way of making that art possible. On a single day, from 9 a.m. to 9 p.m., a string of visitors was invited to spend thirty minutes at a time with Lazard, who mostly stayed in bed. Each visitor was asked to bring flowers, which were placed on a table and formed “a grand sculpture” and “performance relic that was itself fugitive.” ¹⁶ Lazard in turn supported the visitors, inviting them to sleep, talk, or stretch.

Support System (for Park, Tina, and Bob) was inspired by Bob Flanagan’s Visiting Hours (1992) and by the Care Collective, the group of people who participate in McArthur’s evening care routine, from massaging and toothbrushing to drawing and making videos. McArthur and Zavitsanos discuss their approach to care in “Other Forms of Conviviality,” noting how they reject reciprocity or anything that resembles a contractual relationship or capitalist exchange. ¹⁷ “Give-and-give, or take-and-take,” says Zavitsanos. ¹⁸ They also describe the Care Collective’s evolving art practice, especially its turn to writing care “scores” in 2012. These scores can variously be read as descriptions or transcriptions of care activities, as in “Score for Lift and Transfer,” “Shirt Score,” “Score for Backing Up.” As performance scores, they also function as instructions, hailing the reader into scenes of care labor, conviviality, and access intimacy. ¹⁹

SCORE FOR BACKING UP

Think about your first lift with your partner.

Know that your partner has done this one million times more than you and that in twelve point font, a list of names of people that have done these lifts with her is 38 inches long when printed and leaves a 14 inch block of space for all the names that will come after you.

Realize you don’t remember the occasion of your first time, despite never having done this before.

Realize that she probably does remember.

Consider this discrepancy.

Know that now feels like the first time precisely because the first time felt like you’ve done this forever.

Pull the manual wheelchair down the ramp backwards. ²⁰

The Care Collective’s attitude toward giving, taking, and instructing has profoundly influenced their work in video, installation, and performance, as well as their relationships to audiences and performers. They have spun off new “care collectives,” including the Crip Fund, a mutual-aid fund that Lazard, Zavitsanos, McArthur, and others launched in the early months of the pandemic. ²¹

The practice of creating performance scores has been taken up by Lazard, who amalgamates the function of scores with video captioning. In a joint presentation titled “Expanded Cinema” at the Center for the Humanities (Graduate Center, CUNY) in 2017, Lazard, Zavitsanos, and McArthur discussed “the use of instruction in each artist’s work, as they engage audiences in a relationship of dependency … and indefinite duration.” ²² Expanded cinema, in their practice, requires orienting the audience to everything that supports a work: technology, labor, money, and the “bodyminds” of artist/audience/performer. ²³ Open captioning, which is always present in their videos and not an optional feature like closed captions, might serve the function of access to audio (dialogue and film score) but also frequently serves as a performance score or set of instructions read aloud by a narrator. The caption/score might even be the entirety of the work. Like the print-based “Score for Backing Up,” these open-captioned video scores insist on a relationship with the audience distinct from merely or transparently providing access. Here “access” is used “as a primary material” for offering directions or care, for requesting performances or intimacy. ²⁴

Perhaps more than any other artist in the network, Lazard has iterated scores across diverse mediums: open-captioned video, wall text, dance and dance film, screen-printed linens. ²⁵ If film was their “first love” and the focus of their undergraduate studies, chronic illness brought a simultaneous abundance and contraction of methods. ²⁶ On the one hand, disability led them “to explore other media as [they] became increasingly interested in how artistic production was related to capacity and ability.” ²⁷ On the other hand, their film and video work has moved away from a focus on the image and toward an emphasis on audience:

The visual vocabulary of my work has become more and more reduced, and I think that change reflects a change in me as an artist; I’m less concerned with performing competency in an ableist world. It’s also an attempt to circumvent the ableist insistence of the visual in the realm of art. There are many ways to register and experience artworks. My practice has become more responsive to the audience and to the site of reception. ²⁸

This focus on the audience has also led Lazard to rethink the production process for microbudget video artworks. Instead of trying to fund their work via crowdfunding, grants, residencies, and other more familiar forms of survival in a profit-driven art scene, Lazard has embraced minimalism as an aesthetic and a means of crip filmmaking:

Usually my process for making a work begins with an idea of something that is in excess of what I am actually capable of doing, in terms of my energy or concentration, and then I kind of scale back the production. This relates to the experience of any disabled person negotiating ableism: the expectations of capacity that exceed the support that one has to create anything in an ableist world. ²⁹

Lazard’s video practice can be described as “disability minimalism,” especially those works composed primarily of captions that function as scores. Minimalism, they argue, “instead of being an unmarked engagement with ideas of light, space, volume, et cetera, is actually a materialist engagement that’s impossible to disentangle from life and living.” ³⁰ What disability brings to minimalism is not economy but rather necessity with regard to the practicability of materials and the energy of the artist.

Scores by Carolyn

In most art and media, the word score refers to the musical portion of a film soundtrack or to written music and notations of movement for a dance performance. ³¹ Other senses of score include a cut, a line, marking time; a tally of a debt or securing of drugs; an index of ability, such as a score on a test. To score: to steal or win something, to hook up with someone. If captions are disability text, when Lazard writes captions as scores these other meanings also come into play.

The captions that Lazard adds to The French Chef in A Recipe for Disaster are neither a score nor a set of instructions, but they resituate the episode’s original open captions into a performance score in that they transcribe a spoken recipe: “A meal is explained as it’s made. The most accessible content.”

Lazard’s captions for CRIP TIME (2018), made the same year, intersperse transcriptions of sound with descriptions of the visual action on-screen, serving both as typical captions and as score. CRIP TIME is a ten-minute video artwork that unfolds at a slow pace while a pair of brown hands with gold nail polish meticulously open and close a colorful set of daily pill organizers placed on an embroidered tablecloth. In a static frame, shot from a bird’s-eye view, the unidentified hands proceed to hold different bottles, count the pills, and eventually place them into compartments labeled “morning,” “noon,” “evening,” and “bedtime.” The work ends when the pill organizers are completely filled with medications. Some of the captions, all parenthetical white text located at the bottom of the screen, read:

(each plastic compartment is unclasped.)

(a pill bottle is emptied into a hand.)

(pill contents rattling occasionally)

(pill distribution continues)

(a breath is taken)

These captions convert on-screen sounds into text for deaf viewers, or for those with the sound turned off, but as a score they also either transcribe or dictate the action of the hands. The use of parentheses is noteworthy, as it differs from their common use in closed captioning: usually, captions will include square brackets for sound effects or music—as in [applause] or [flute solo].

In CRIP TIME, Lazard instead uses parentheses to describe the moving image as well as the sounds in this dialogue-free piece. By breaking with tradition, Lazard changes closed captions from a functional “accessibility tool” meant to comply with legal requirements into a more playful and open-ended component of the work. Inviting multiple interpretations, the uncommon use of parentheses might also be read as resisting the logic of side effects, which are often downplayed by pharmaceutical companies by using small fonts, parentheses, and other textual techniques meant to minimize and dismiss their potential harm.

CRIP TIME is part of a decade-long investigation of chronic illness, cinematic time, and the medical-industrial complex, exposing the invisible work that Lazard, who lives with multiple chronic illnesses, is required to perform in order to survive. Not much happens during the video’s ten minutes. To that extent, the video is an endurance test. It asks the viewer to patiently watch a long shot while letting go of any inherent desire for narrative, causality, or character development. Hands, pills, pillboxes, captions, breath—these are the elements that make up CRIP TIME. Unlike many durational works, which strategically increase the average shot length to invoke boredom and unease, CRIP TIME recasts slowness as a survival strategy. In Lazard’s words, “[S]lowness has a lot to do with the mundane in some ways because our lives are made up of myriad slow experiences that are the foundation of keeping us alive.” ³² As a medium, HD video is not only cheaper and more accessible for independent filmmakers than film but also associated as a medium with the real time of daily events. As such, it is invested in the “kind of duration that matches with our lived experience.” ³³

As a durational work, the video also forces viewers to acknowledge the repetitive, tasking nature of spectatorship, care labor, and engagement within the US medical system. The captions, by describing to a sighted reader that which can also be seen in the moving image, underscore this repetitiveness. Like the pillboxes and prescriptions, the score marks time and offers a set of instructions. Lazard responds to their prescription with slowness and by painstakingly depicting what is often a hidden experience and infrastructure of self-preservation. The medications themselves, while remaining unknown to all but those fellow patients who can identify the pharmaceutical products based on their own medical regimes, tell the story of endless waiting rooms, medical appointments, pharmacy visits, insurance claims, and hours lost to side effects, symptoms, and exhaustion. Instead of “chrononormativity,” with its reliance on a linear sense of progression and emphasis on productivity, the muscle memory guiding these hands is also the product of endless repetition. ³⁴

In other pieces, Lazard uses the genre of the score to instruct or otherwise directly engage with an audience. Score for “Feel It for Me,” installed in 2018 at the Leslie-Lohman Museum along with a shelf of books, was simply wall text addressing the reader as “Dear performer.” The instructions ask the museumgoer to take action “on behalf” of Lazard, who is isolating at home as a result of illness. The “performer” is instructed by the score to choose a book, touch it in particular ways, smell it, and otherwise become intimate with it as an object. “May the care you perform engender haptic relations between you, me, and the books,” Lazard writes. ³⁵ This score provides the disabled artist with access to the books and the museum; the instructions bind the artist to the audience member, who becomes a performer and collaborator.

In recent video works, Lazard uses scores to address particular audiences, invoking disability justice and Black disability politics. Notes from the Panorama, produced with Amber Rose Johnson for the Black Embodiments Studio in 2021, is a video comprising a sequence of historical photographs and archival footage of Black people playing and resting, with open captions that serve as “a score for touch, slowness, and meditation” specifically for Black and brown viewers. ³⁶ The faint yellow captions, sometimes barely legible at the bottom of the screen, are read aloud at a slow pace by Johnson and Lazard, one at a time or in unison. Statements such as “Consider the memories of touch that your body holds” and “Touch the underside of something in your environment…. Sense its texture through repetition” are interspersed with instructions for tapping in the mode of EFT (Emotional Freedom Technique) or acupressure. Johnson and Lazard explain that Notes from the Panorama is intended to “slow time and support embodied awareness during major transitions in the pandemic, which has only intensified the need for rest in Black and Brown communities.” ³⁷ Here the video captions depart from any universalized disability text to reference racialized inequality in the experience of illness, injury, and impairment.

At other times, Lazard employs video captions while dispensing with the moving image entirely. For Long Take (2022) Lazard drafted a dance score for friend and collaborator Jerron Herman. Rather than screening a film of the performance, the installation is made up of the sounds of Herman dancing, the narrated dance score, and an audio description of the event. In its announcement for the installation, the Walker Art Center notes:

Long Take intentionally blurs the boundaries between instruction, description, and translation…. By presenting this dance work sonically rather than visually, Lazard considers how a performance might be communicated beyond its image and questions why visuality has been the default vehicle for aesthetic experience. Using text and sound rather than moving image, Lazard encourages us to think about ways that artworks are made accessible as well as the often-unseen networks of care, labor, and friendship that make collaborative endeavors possible. ³⁸

Lazard connected Long Take to a “Black krip … methodology” in an opening-day talk with curator Pavel Py, describing access (captioning or audio description) as “a tool of fugitivity as a Black artist.” Captioning is here a technique for desired “opacity.” Scores in this case allow an improvisational response to “inhospitable” or “unaccommodating” settings like elite arts institutions. ³⁹

Lazard’s work calls into question the presumed objectivity of captions, further revealing that captioning is never innocent. Even as seemingly straightforward audio transcripts, captions can literalize, naturalize, underscore, reinforce, select, and hierarchize the world of sound. By contrast, Lazard’s opaque caption scores create alternate or multiple realities. In Notes from the Panorama, they draw out time, turning a still photo into a long take, guiding a viewer or listener into repose. In Long Take, the caption score manifests the collaboration between Lazard and Herman while granting both a measure of ambiguity or nontransparency. Access is grounded, Lazard reiterates, in relationships rather than a one-to-one translation:

There are so many incredible disabled artists who are thinking through definitions of accessibility that don’t necessarily evolve from Western frameworks of rationality or intelligibility, but are focused rather on the idea of being together, of collectivity and care, grappling with the real challenges of accessibility rather than this sanitized idea of transparency. ⁴⁰

As scores, captions do not center access to static content, nor do they, like early structural films, center the medium itself. When scores are not black-boxed, backstage, or otherwise hidden from the audience—when they are presented on-screen in the form of disability text (i.e., open captions)—they initiate new relationships between artist and audience; they become compositional tools for giving and requesting assistance, for obfuscation, and for the open-ended art making characteristic of the New Disability Arts.

Notes

1. Federal Communications Commission, “21st Century Communications and Video Accessibility Act (CVAA),” last updated January 27, 2021, http://www.fcc.gov/consumers/guides/21st-century-communications-and-video-accessibility-act-cvaa.
2. Disability Rights Education & Defense Fund (DREDF), “NAD v. Netflix,” October 10, 2012, https://dredf.org/legal-advocacy/nad-v-netflix/.
3. As Kate McWilliams posted on her Twitter feed: “We are all talking about how it feels to see ableds accommodating themselves,” @KateMcWilli, March 7, 2020, https://twitter.com/KateMcWilli/status/1236440655095689216?s=20&t=0wwO_hGv0M3zwLIygrg6hA.
4. The authors’ phrase “New Disability Arts” highlights the recent use of the phrase “disability art(s)” by funders, arts organizations, and artists themselves. Kevin Gotkin calls this moment a “swell,” warning that it might “recede.” Gotkin, “Artistry and Activism: Building a Movement for Disability Justice,” A Blade of Grass 28 (Fall 2019), https://abladeofgrass.org/articles/artistry-activism-building-movement-disability-justice/. See also Simi Linton, “Proclaiming Disability Arts,” Mellon Foundation, https://mellon.org/grants/grants-database/grants/new-york-university/2109-11491/.
5. “Normate” is a term coined by Rosemarie Garland-Thomson to reference the normative ideals in a particular culture. See Rosemarie Garland-Thomson, “Integrating Disability, Transforming Feminist Theory,” NWSA Journal 14, no. 3 (Autumn 2002): 10.
6. See Pooja Rangan’s essay on Jordan Lord, “Listening in Crip Time: Toward a Countertheory of Documentary Access,” in this dossier.
7. Shannon Finnegan is the artist who “captioned” the Argos building windows. See “Activating Captions: Shannon Finnegan,” ARGOS, 2021, http://www.argosarts.org/event/activating-captions-shannon-finnegan. See also Christine Sun Kim’s Captioning the City project: https://mif.co.uk/about/press/press-media-library/MIF21-media-library/captioning-the-city-christine-sun-kim/.
8. Tobin Siebers, Disability Aesthetics (Ann Arbor: University of Michigan Press, 2010).
9. Josephine Machon, “Graeae’s Jenny Sealey and Playwright Glyn Cannon: Seeing Words and (Dis)Comfort Zones—The Fusion of Bodies, Text and Technology in On Blindness,” (Syn)aesthetics: Redefining Visceral Performance (London: Palgrave Macmillan, 2009), 170.
10. Carolyn Lazard and Edna Bonhomme, “Carolyn Lazard on Illness, Intimacy, and the Aesthetics of Access,” Frieze, February 28, 2022, http://www.frieze.com/article/carolyn-lazard-edna-bonhomme-interview-2022.
11. Performance Space New York, “I wanna be with you everywhere,” 2019, https://performancespacenewyork.org/shows/i-wanna-be-with-you-everywhere/.
12. Performance Space New York.
13. Performance Space New York.
14. Carolyn Lazard, “Accessibility in the Arts: A Promise and a Practice,” Recess, 2019, https://promiseandpractice.art/.
15. Lazard and Bonhomme, “Carolyn Lazard on Illness.”
16. Room & Board, “Carolyn Lazard: Support System,” October 2016, https://roomandboard.nyc/salons/carolyn-lazard-support-system/.
17. Park McArthur and Constantina Zavitsanos, “Other Forms of Conviviality,” Women & Performance: A Journal of Feminist Theory 23, no. 1, 126–32 (2013), http://www.womenandperformance.org/ampersand/ampersand-articles/other-forms-of-conviviality.html.
18. Mara Mills and Rebecca Sanchez, “Giving It Away: Constantina Zavitsanos on Disability, Debt, Dependency,” Art Papers, Winter 2018/2019, http://www.artpapers.org/giving-it-away/.
19. Mia Mingus, “Access Intimacy, Interdependence, and Disability Justice,” Leaving Evidence (blog), April 12, 2017, https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.
20. Mingus.
21. “Crip Fund,” GoFundMe, March 9, 2020, http://www.gofundme.com/f/crip-fund.
22. Center for the Humanities, “Dependency and Instruction, Expanded Cinema: Carolyn Lazard, Park McArthur, Constantina Zavitsanos,” October 20, 2017, https://www.centerforthehumanities.org/programming/dependency-and-instruction-expanded-cinema-carolyn-lazard-park-mcarthur-and-constantina-zavitsanos.
23. On “bodyminds,” see Margaret Price, “The Bodymind Problem and the Possibilities of Pain,” Hypatia 30, no. 1 (Winter 2015): 268–84.
24. Zavitsanos uses this phrase regarding collaborations with Park McArthur and Amalle Dublon. Mills and Sanchez, “Giving It Away.”
25. Lazard’s Scores for Convalescing 1, 2, and 3, an installation at the 2017 Whitney Biennial, was made up of a rack of folded and hanging hospital linens, printed with scores such as “be grateful for this disease which keeps you close to death which keeps you close to life.” See Jane Panetta, Rujeko Hockley, and Ramsay Kolber, Whitney Biennial 2019 (New Haven, CT: Yale University Press, 2019), 41–42.
26. Lazard and Bonhomme, “Carolyn Lazard on Illness.” For this reason, Jordan Lord has described Lazard’s minimalist video work as also a form of “contracted cinema.” Lord, “Disability, Form, and Distribution,” Third Cinemas, 2018, http://thirdcinema.net/portfolio/disability-form-distribution/.
27. Lazard and Bonhomme, “Carolyn Lazard on Illness.”
28. Catherine Damman, “Carolyn Lazard,” BOMB, September 10, 2020, https://bombmagazine.org/articles/carolyn-lazard/.
29. Damman.
30. Damman.
31. The preceding heading is a reference to Scores for Carolyn (2019), a video work of “instructional scores for care” by Constantina Zavitsanos and Park McArthur. See https://vimeo.com/381343465.
32. Danielle A. Jackson, “Carolyn Lazard’s CRIP TIME,” MoMA, April 7, 2021, http://www.moma.org/magazine/articles/529.
33. Jackson.
34. Coined in 2010 by Elizabeth Freeman, the term “chrononormativity” critiques the temporal systems that govern invisibility by applying such medical categories as prognosis, remission, recurrence, chronicity, and terminality to determine one’s ability to be a productive citizen. For an overview of the term, see Ellen Samuels and Elizabeth Freeman, “Introduction: Crip Temporalities,” South Atlantic Quarterly 120, no. 2 (April 2021): 245–52.
35. The text of Score for “Feel It for Me” is available at https://www.instagram.com/p/CDjboMbFzqE/.
36. Black Embodiments Studio, Notes from the Panorama, January 11, 2022, http://www.youtube.com/watch?v=MAbZaMlcqWs.
37. “Amber Rose Johnson + Carolyn Lazard: Notes from the Panorama,” University of Washington School of Art + Art History + Design, August 5, 2021, https://art.washington.edu/news/2021/08/05/amber-rose-johnson-carolyn-lazard-notes-panorama.
38. Walker Art Center, “Carolyn Lazard: Long Take,” e-flux, February 10, 2022, http://www.e-flux.com/announcements/409365/carolyn-lazard-long-take/.
39. “Virtual Opening-Day Talk: Carolyn Lazard,” Walker Art Center, February 12, 2022, https://walkerart.org/calendar/2022/opening-day-talk-carolyn-lazard.
40. Damman, “Carolyn Lazard.”

© 2022 by The Regents of the University of California. All rights reserved.

From Film Quarterly Dossier: The New Disability Media

By Faye Ginsburg and B. Ruby Rich

This dossier has been inspired by an unprecedented and exciting surge in New Disability Media, a movement in which disabled filmmakers are at the forefront of the repositioning of figurations of disability, acting as both creators and subjects while deploying new aesthetic strategies. The following essays take up films, videos, online media, and installations, as well as the emergent theoretical approaches to evolving disability representations and authorship.

As this dossier was first conceived, CODA (Sian Heder, 2021), a film that was being feted with an Oscar, represented an increasingly problematic approach to disability. Along with many other critics of this film, Emerson Goo points out: “In CODA, deaf culture is portrayed as stubborn and provincial, and the Americans with Disabilities Act seemingly doesn’t exist.”¹ The complete dossier in this issue is an energetic response to any such approach, an opening up of the field of film/media studies to works that may not win Oscars but instead do something more urgent: they break new ground in charting first-person representations that have too long been marginalized on- and off-screen, imagined to not be of general concern. Underscoring this point, Emily Watlington, in her recent essay “Nothing about Us without Us: Disability Arts Now,” writes:

Disability-related concerns have long been written off as too niche, as affecting too few people, to deserve the limelight. But through cross-disability solidarity, artists and activists have formed myriad coalitions, following trails blazed by crip elders too numerous to name. With art as a primary weapon, they have demanded that their stories and perspectives infiltrate and change a culture riddled with ableist norms. ²

This dossier aims to begin filling the space that lies between traditional, often unwittingly ableist cinema studies and the thriving domain of new disability studies, where narrative breakthroughs and emerging strategies for aesthetics of access are being vigorously promoted and analyzed.

A number of authors in the dossier emphasize a foundational “aesthetics of access,” the term that describes how the material features that create accessibility—such as audio description and closed captions—are not add-ons to already completed media works but rather elements that are baked into the project in ways that reshape aesthetic possibilities. ³ They focus on works that move beyond what disability artist/activist/writer Kevin Gotkin has described as “film designed for a nondisabled gaze (subtitles instead of captioning, no audio description), playing to an almost prurient voyeuristic interest in ordinary disabled life.” ⁴

The materiality of screenings also matters. Disabled filmmakers embrace a rethinking not only of the films themselves but also of who the audience is, who is telling the story, and how to create an inclusive cinema, one with affordances incorporated on the screen and soundtrack from the outset. All films made without such affordances are necessarily and by design (or unthinking design) exclusionary. Even something as simple as starting time can be exclusionary. When Faye Ginsburg and Lawrence Carter-Long found that the dependence of attendees in wheelchairs on unreliable accessible transportation led to chronic late arrivals for their film series, they flipped the usual screening structure and staged receptions ahead of the films so that “crip time” was built in.

How can nondisabled scholars, curators, and audiences be motivated to rethink whose stories are being presented, and how? Consider the baseline accommodation of wheelchairs. How many power chairs and service dogs can get into your screening spaces? What about welcoming atypical behavior and occasional unruly audiences to screenings of films that represent them (and others)? And what about the backlash by sighted cinephiles against the “discomfort” of seeing open captions on-screen that they cannot turn off?

Mainstream festivals do not have a good track record in this regard. Consider, for instance, filmmaker Reid Davenport’s damning report on South by Southwest as one such example. He notes that “South By Southwest’s accommodation page reads more like a laundry list of disclaimers, rather than a hub to welcome potential disabled attendees…. Most disturbing of all is the fact that attendees requiring accommodations can request an Accessibility Designated SXSW Badge…. I would never wear my accommodation information or general need for accommodations publicly.” ⁵

There are spaces, of course, that have thought long and hard about these issues: those that have specialized in festivals devoted to disability media. In the United States alone, these include the San Francisco–based Superfest Disability Film Festival, the longest running of the festivals, launched in 1970, and on the East Coast, the NYC-based ReelAbilities Film Festival, founded in 2007 and now the largest US disability film festival, traveling to venues across North America. ⁶

Creative activism on the part of disabled filmmakers has extended beyond the aesthetics of access in their work, beyond rethinking screening spaces, and has moved into the realm of funding, too, particularly around issues of disability justice. ⁷ In 2021, award-winning disability activist and documentary filmmaker Jason DaSilva launched the AXS Film Fund, with the backing of the Bertha Foundation, to support an underserved group: creators of color with disabilities who are engaged in documentary work. ⁸

And the work goes on. Given more months and more pages, this dossier would have contained double or triple the number of articles, authors, and films—testimony to the lively, ongoing fluorescence of the field of New Disability Media. The fact that the works by the filmmakers in this issue have been shown at the Museum of Modern Art, the Whitney Museum of Art, the Sundance Film Festival, Tribeca, the Walker Art Center, and the Venice Biennale, among other venues, marks this moment as one in which they and their works have moved from the “disability circuit” into the very heart of mainstream exhibition and acclaim.

Readers will notice the dossier’s emphasis on nonfiction work, including a wide range of experimental documentary and installation work (and an archive of documentation related to the pathbreaking fiction filmmaker Stephen Dwoskin). Interestingly, all the works stress a first-person point of view, inviting their audiences into the experiential worlds of disability on their own terms.

Jenny Chamarette’s insightful exploration of the archive of Stephen Dwoskin’s work leads her to posit the medium as “a technology of phenomenological exploration.” The posthumous archive, recently digitized, reveals what it is to be “a desiring, activist, empathic, periodically well and unwell, disabled man.”

Pooja Rangan offers a lively “countertheory of documentary access” that illuminates Jordan Lord’s use of such access features as open captions and burned-in audio description. This work establishes what Rangan calls “a medium of crip creativity” that invites the audience to share an intimate, familial perspective on an out-of-synch and misfitting temporal experience.

Slava Greenberg looks closely at how The Code of the Freaks continues and transforms a forty-year tradition of “Hollywood shaming” in documentaries. Greenberg demonstrates how the experience of disability confers expertise, as witnessed in the film’s commentary by the cast of “criperati” who join Carrie Sandahl in demanding: Anything but the same movie, again.

Mara Mills and Neta Alexander’s thoughtful analysis of Carolyn Lazard’s work leads to a deep understanding of this media artist’s remarkable play with captioning, audience address, and the aesthetics of crip time. In Lazard’s case, crip time is determined by their experience of chronic illness, rejecting “chrononormativity” in favor of a slowed-down interactive spectatorship determined by the artist’s deliberate pacing.

In her compelling discussion of Vision Portraits, Arseli Dokumaci examines how blind filmmaker Rodney Evans develops the complexity of crip time, in conversation with other blind artists, as an assertion as well as a reckoning of loss, pain, sadness, and ambivalence—emotions that have been pushed to the margins in disability studies until recently.

The filmmakers included in Lawrence Carter-Long’s discussion of what he calls the “next wave” in disability media—Jason DaSilva, Julie Wyman, Reid Davenport, and Nicholas Bruckman (with Ady Barkan)—all have activist connections. Carter-Long reminds readers: “Life on the margins equips its residents with a keen sense of observation” and points out that “it is long past time that these skills be unleashed in the service of disabled artists.”

The marginalization of so much groundbreaking work has impoverished the field for too long, leaving much work yet to be done. Fortunately, these dossier contributors are steeped in the histories and contemporary shape of disability media. Their writings here can extend the field’s thinking as to how such work makes new meaning and overturns stale ableist assumptions. ⁹ Their essays lay a foundation of robust crip theories that are poised to carry forward the overdue promise of crip futurities for film and media studies.

Authors’ note

Samantha Louise Ginsburg Myers, disability activist and avid lover of media in all its forms, was born with the rare genetic degenerative disorder familial dysautonomia (FD). Determined to tell her story to the world, at age ten she asked the Make-A-Wish Foundation to grant her wish: to appear on Nick News with Linda Ellerbee to tell other kids what it was like to live with FD, launching her lifelong activist efforts for those with FD and all people with disabilities. The clip from her 2000 appearance, a short segment titled “My Life,” is archived at https://brooklyn.njvid.net/show.php?pid=njcore:162838. ¹⁰

Notes

1. Emerson Goo, “How https://hyperallergic.com/689971/how-coda-and-sound-of-metal-misrepresent-deaf-culture/.
2. Emily Watlington, “Disability Arts: Nothing about Us without Us,” http://www.artnews.com/art-in-america/features/disability-arts-now-1234642326/.
3. Jenny Sealey and Carissa Hope Lynch, “Graeae: An Aesthetic of Access—(De)Cluttering the Clutter,” in Identity, Performance and Technology: Practices of Empowerment, Embodiment and Technicity, ed. Susan Broadhurst and Josephine Machon (London: Palgrave Macmillan, 2012), 60–73.
4. Kevin Gotkin, https://cripnews.substack.com/p/crip-news-v52.
5. Reid Davenport, “Disability and Film Festivals: The Secret and the Not-So-Secret Complacencies,” http://www.documentary.org/online-feature/disability-and-film-festivals-secret-and-not-so-secret-complacencies.
6. The Sprout Film Festival, dedicated to films by and about people with intellectual and developmental disabilities (I/DD), was founded in 2003 but is now, post-COVID, a virtual streaming service, Sproutflix.
7. “Ten Principles of Disability Justice,” http://www.sinsinvalid.org/blog/10-principles-of-disability-justice.
8. Matthew Carey, “AXS Film Fund Launched to Serve Nonfiction Creators of Color with Disabilities,” https://deadline.com/2021/04/axs-film-fund-launch-doc-creators-of-color-with-disabilities-news-1234730547/.
9. For more on this moment and fresh insights into disability aesthetics, see Faye Ginsburg, Mara Mills, and Rayna Rapp, “The ‘Swell’: Disability Arts in the Time of COVID-19,” chap. 1 of of Curating Access: Disability Art Activism and Creative Accommodation,ed. Amanda Cachia (New York/London: Routledge, 2022).
10. Samantha Louise Ginsburg Myers was the daughter of Faye Ginsburg and Fred Myers.

© 2022 by The Regents of the University of California. All rights reserved.