“I am we, we are a year, we year, we are rest, we rest.” 

In winter 2024, Sop had a severe relapse of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), leaving them housebound in South East London.

That summer, in the days leading up to a friend’s birthday celebration, the artist rested carefully so they would be able to attend. The night before, they started taking what was touted as a “magic” pill for insomnia. They didn’t sleep at all and had to miss the party. But in a sleep-deprived haze, they wrote, as they described in a recent interview [1], “a solidarity rant, a kind of letter to other disabled people stuck indoors.” 

When Shape Arts, a UK disability arts organization, approached Sop with a commission, they decided to adapt the essay into a script for We Year, a mixed-media love letter to others living with energy-limiting conditions. The short film premieres at RestFest—a film festival and virtual space by and for the disability community—as part of a program co-organized by The Remote Body, Resting Up Collective, and Ort Gallery. 

With a poetic voiceover and ethereal soundscape, We Year immerses viewers in a chronic illness flare during a sweltering summer, blending decades-old archival footage from when Sop was well enough to move outside freely with recent phone footage shot at home. Shifting between past and present and between interior and exterior, the experience is at once isolating and unifying, claustrophobic and liberating. 

We Year also features 16mm direct animation, a technique that involves drawing and scratching moving images directly onto film stock rather than recording with a camera. Here, Sop used ink to overlay the orange stress bars from their Garmin watch across the entire film—a constant representation of their body that acts as a symbolic barrier between them and the audience. 

The following interview has been edited for length and clarity. 

When did you begin to think of yourself as an artist? 

I always wanted to be an artist. Even as a kid, when I was asked, “What do you want to be?”, I was like, “An artist!” I honestly have never thought about doing anything else. I grew up in the deep countryside, and there wasn’t much access to contemporary culture, although I was obsessed with music and music magazines. There was this teen music magazine called Smash Hits that I loved, and I made collages and scrapbooks of pop stars. When I was 13, I went to a big retrospective of the massive British artist David Hockney, who just died, and it was the first time that I’d seen contemporary art. It blew my mind, and that’s the first time I remember thinking, “Oh, this is something serious that I want to do.” 

What questions or themes does your art usually explore? 

I find it hard to make work that isn’t about my life and the things that I’m dealing with. What I do always ends up being ultra-personal. That’s not something that a lot of people do, necessarily. The act of living as a chronically ill person means that you have to live in the world in a very different way from people who are not chronically ill. Chronic illness is a fertile area for ideas. You’re living the life and thinking about the life at the same time. If you’re an artist or someone who thinks about things in conceptual ways, you can’t help but try and interpret your life into art-making, projects, or ideas. Everything’s interesting. It’s like living life wonky.

As a chronically ill person,  I can’t do a 9 to 5. I can’t necessarily keep to plans, and I can’t always do basic things, like sometimes even look after myself in a normal  way. The agency that I have is to interrogate what this life means and the challenges that it poses and what is interesting about that. What can I say that’s beyond how I would perhaps describe being sick to a stranger? Like, what’s within that? All of the work that I make—even if it looks not about that—is going to be about that.   

And then the other part of it is that I grew up in the field and was a tomboy covered in mud. My understanding of the world was through nature, and now I’m in a flat without a garden. I can see some trees in the park just over there, but quite often, I’m not well enough to go and hang out in the park. I am pretty obsessed with nature and the fact that I can’t get to it. I can’t really have that life currently.  

In your bio, you describe yourself as “a torn and crooked leaf, a root embedded in the dirt, a shoot reaching to the sky.” Would you please elaborate on what this means? 

When I wrote that bio, I was making work about my body being the same as the microbiome in the soil. “A torn and crooked leaf” is being chronically ill. “A root embedded in the dirt” is really what it sounds like, within the context of that specific work. And the “shoot reaching to the sky”—my work deals with pretty hefty emotions, but there’s always hope. My life is not a miserable life; it is hopeful, and I do believe there’s something so crucial in being chronically ill that you absolutely have to keep hope alive. It takes a lot of work to do that and to get there. It’s not easy, but it’s super important. If you have this restricted life, you absolutely have to shoot for the sky. Because time just goes on.  

What does working in crip time [2] look like for you? What are your long-term goals as an artist? 

If you’re truly working in crip time, it’s fairly impossible to have long-term goals. You haven’t really got a choice when you work. You can do your very best to carve out time or space. Currently, I have about a couple of hours in the early morning when I can manage to do something. My afternoons and evenings—I simply can’t make work then. If you have such a limited time to make work, the amount of work you make is going to be low. It will have to meet your capacity, and that doesn’t fit well with current art market production timelines or expectations. Sometimes, you can’t make something for a year because the thing that you should be working on—and the thing that is your work—is your health. That’s your full-time job.  

I deeply believe that making in crip time actually is truthful to the world. We would probably all be better off if we did. Really, it means making work to your capacity, and that can mean a lot of things. You don’t need to be ill to make to your capacity. 

It’s a more authentic timeline of meeting yourself where you’re at, rather than forcing yourself to meet arbitrary or toxic timelines. 

You haven’t chosen to have chronic illness—you’re forced into doing that. And I don’t think that’s a bad thing necessarily. Asking what would I like to do for my long-term goals—I find it very hard to answer because, first of all, I live, like, day to day and, second, when I think about what my long-term goals would be, it’s from the perspective of someone without a disability because I currently cannot see how I would be able to do more than what I’m doing unless I had an enormous amount of more support. 

How did you decide which media to work with for this project? 

Films and writing have always been the two mediums I mostly turn to, and actually they’re the most accessible things for me to do now, being housebound. When I was asked to make the film, I just didn’t have it at all in my means to film new work or leave the house, so I had to kind of figure out how to make a new work out of what I had, which was this personal essay I wrote about being stuck inside in the summer. I made the film throughout another summer of being stuck inside. A lot of chronically ill people turn their camera or phone or whatever onto their surroundings, so I had bits and bobs that I filmed. When I started making films, I would just film tons of different stuff. I had my little Hi8 video camera around the whole time, so I had lots of little clips that I hadn’t used, and I didn’t actually think that I was ever going to use them for anything. But that obviously wasn’t enough, and I didn’t really want to make a film which was just a film inside my house—there’s plenty of films like that. I had a whole bunch of old footage from the 90s. I digitized all of these tapes a few years ago, and they looked so great. A lot of that stuff was filmed out of the house, and then there were funny effects that I filmed which made it into the films. There’s a lot of blobs of color, which are actually motorway lights and ended up being this really nice kind of texture, which floated over and broke up some of the images.  

Hi8 and MiniDVs are the two cameras I was using in the past, so I have footage from both of those. And then there was 16mm direct animation. Each section of the film has a different animation running over it, but the animation is quite transparent, so it’s always there. It’s textural and has multiple meanings. And then I commissioned my friend to make the soundtrack. 

Would you elaborate on the meaning of the title of the film? 

The thing that’s turned me on most about this film is the fact that I can try and get “to year” and “yearing” adopted as a new way of describing spending all this time being sick. I think the word “year” is long enough for people to imagine, “Whoa, you are sick for a whole year. That’s a really long, unbearable time.” But then you make it into “yearing,” and then it could be even less than a year, but it’s probably closer to a year or multiple years. Then I was interested in what would happen if the years were then broken up with periods of being well, with relapses included as well.  

I find it really tiresome to have to explain the last five years of my life. So to not have to say, “Well, I was sick for a couple of years, housebound and bedbound, and then I got well again, and then I had a relapse”—it’s just like, “I was yearing.” I would love for it to become part of the lexicon of chronic illness.  

What does it mean to have “We Year” screened at RestFest? 

There’s this informal network of crip friends who work with each other. Not everyone works together, but we all know each other and there’s really close friendships within this group. They’re all small, crip-led organizations that have been made pretty much for the same purpose, which is remote events, screenings, and workshops. I was just really keen to connect and uplift all of these organizations. We created this program together, and I’m really proud of it. It’s been a lot of work, but it’s really nice making things with your friends. The access intimacy side of it all is real. Creating or programming with your friends is a very accessible way of making because we all understand each other and our capacities. I’ve said capacities a million times. 

You need to coin a new term for that as well. 

Okay, I’ll get on that for next time. 

We Year, through July 12 (if you start watching on June 28); RestFest Film Festival. “I am we, we are a year, we year, we are rest, we rest.” 

[1] “Interview with artist-filmmaker Sop + a Special Screening of their New Film.” RestFest, 2026,
https://restfest.substack.com/p/interview-with-artist-filmmaker-sop. 
[2] In her 2013 book Feminist, Queer, Crip, disability scholar Alison Kafer writes, “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” 

“That was a barrier I wanted to address because I know I’m not alone in that experience,” says Miriam, who lives in California. 

And so, in the spring of 2023, they founded RestFest, described on its website as an online “gathering space and virtual film & video art festival created by/for the Disabled, Deaf, Chronically ill, Neurodivergent, and/or Mad arts community worldwide.” 

This year’s festival is available to stream anytime in February—and viewers are invited to watch from bed. RestFest operates on “crip time,” recognizing the different pace at which disabled people may go through life due to their sensory, physical, or cognitive needs. Crip time rejects ableist productivity norms and offers inclusivity and comfort instead. 

“This Werewolf Complex,” one of the 27 short films and video artworks, adroitly dramatizes an epileptic aura through hallucinations of SpongeBob SquarePants and Rorschachian patterns that morph into human silhouettes. Another work—shifting the meaning of aura from a focal seizure’s onset to aural gestalts—deftly considers how Deaf people access sound in their minds through sight, touch, and imagination. 

While all of the works screened are made by disabled or chronically ill artists, not all of them are about disability or illness. Nor are they intended to educate non-disabled viewers (though RestFest is open to everyone).  

Rather, RestFest taps into an “inherent mutual understanding between community members,” Miriam says. “I’ve had filmmakers who showed films reach out to me and say that they could tell the audience understood their work in a way they hadn’t seen before, which is really special.” 

Similarly, Sammy Holden says that if they were to submit their work “Night Holding Still”—which dreams a path through the shame of their chronic illness—to an experimental film festival, “it might be fine.” 

“But reaching audiences who will potentially understand it more directly is just something that I think can only happen at a festival like RestFest.” 

Beyond Words 

The realities of disability are often ineffable. Reflecting this, many of the festival’s works are experimental, which “leaves space,” Miriam says, “for sitting in the uncertain and the unknowable.” 

“Verbal language isn’t accessible for everyone,” adds Georgia Kumari Bradburn, a British filmmaker whose “A Brief History of Circles” uses sounds and objects to capture how she processes sensory information as an autistic person. A voiceover narrates the history of circles as flowers, logos, and other structures in that shape appear onscreen.  

Eventually, hyperfixation escalates into meltdown. Objects blur and merge as the voiceover reverberates and multiplies, mirroring how euphoria can turn into overload for Bradburn. 

And then a new, calmer obsession takes hold. It is a mathematical law that two perpendicular sine waves, moving in step, form a circle; the voiceover repeats the word “sine,” followed by shots of a shoreline. Bradburn’s fingers trace the water’s surface—a subtle yet powerful act of self-stimulatory behavior, or stimming. “That’s me transferring my sensory experience to the audience through something as intimate and simple as touch,” she says.  

As part of the festival, Bradburn will lead a workshop on the “autistic camera,” which proposes the camera as a tool for autistic expression. A camera might stim, for instance, by circling a scene. 

Not Explaining—Exploring 

Troels Steenholdt Heiredal, an architect and artist, didn’t discover he was autistic until his 30s. “It was the best thing that had ever happened to me,” he says, “because it gave me a language with which to write myself back into my own life.” 

His relief exemplifies the phenomenon of metagnosis, whereby “one becomes newly aware, in adulthood, of a lifelong ‘condition,’” writes narrative medicine scholar Danielle Spencer [1]. This recognition catalyzed a profound exploration of urban space, perception, and accessibility—an inquiry rooted in his lived experience and often overlooked in conventional architectural discourse. 

Heiredal’s documentary short “Not Included—Embedded” explores his “Autistic architectural approach,” a framework that posits disability as a generative force rather than a limitation. 

Raised in a small town in Denmark, Heiredal currently lives in Taipei. “The way that public space is being used is beautiful,” he says. Through mimetically arranged clips, some of shopfronts doubling as dance studios, his film presents a disabled reading of the Taiwanese capital’s traditional informal architecture—buildings and structures designed by residents, not as high-profile projects, but emerging organically. Heiredal depicts the metropolis as a symphony of its residents’ spatial voices. 

Drawing on theorists like Erin Manning, who frames neurotypicality as a system that decides whose lives matter and whose do not [2], Heiredal challenges inclusion that ends with ADA-compliant ramps, arguing that disabled knowledge should more broadly shape how we build the world. For example, he suggests in a recent essay [3] that hosts create spaces where guests can retreat from overstimulation and craft environments that foster shared-interest interactions. To those ends, a host might furnish a quiet corner with cozy chairs, or intentionally spark a conversation between two guests who don’t know each other but both love, say, experimental films. 

“I’m not interested in dictating what an Autistic architectural approach is… it must be co-created,” continues Heiredal, who will expand on these ideas in a talk at the festival. 

Even before he developed this concept, he had been guided by intuition in his work. “The teachers around me encouraged me to just explore what is there without always needing to explain it, and I feel very lucky in that,” he says. “It’s allowed me to do a lot of things that I didn’t necessarily know how to explain.”  

RestFest embodies this sentiment. And, in that spirit, when he found his grandfather’s old 35mm film camera, he started photographing Taipei. “It felt right to do it this way.”  

Access and Care 

The films and video artworks are grouped into categories defined by the sensations they may evoke: “rumbling,” “inside/outside,” “spaces/routes,” “reverberation/held,” and “mid-air/suspended.” All provide closed captioning and audio description, written or recorded, in many cases, by the artists themselves. One vivid example: In her short film “Song Without Words,” deaf visual artist Olivia Ting plays with typeface and lettering to echo the partial inaccessibility of hearing devices and sign language, and to portray listening as a bodily, interpretive act. 

The festival also features 17 virtual events—among them Bradburn’s and Heiredal’s aforementioned programming, as well as a discussion with Holden and another U.K.-based artist on transgressing genre and gender in film. These events incorporate captioning, transcription, and audio description, along with low-sensory breakout rooms, live access support, and permission to stay comfortable—whether that means lying down, staying off-camera, communicating via chat only, leaving early, or something else. RestFest’s film and readings clubs and arts gatherings, held year round, also offer these accommodations. As disability scholar May Chazan writes, “In our care-filled, artful practices, we slowly make our next world.” [4] 

The first event is a workshop on processing pandemic grief, and the final event will be a screening of a collective film created during the workshop. Facilitator Kit Blamire, a self-identified “anarcho-sicko” artist living in Berlin, organized the same event last year. Participants made one-minute films, which were later assembled together. 

“Folks were talking about how, since they became very ill, they hadn’t been able to make films anymore—and then, coming into this space, they were inspired to make films again,” recalls Miriam, the RestFest founder. 

“I’m disabled,” these attendees said, “but all these other disabled people are making films in these creative ways that are comfortable for their minds and bodies.” 

RestFest Film Festival, through Feb. 28; restfestfilmfestival.org. “No need to get out of bed or off the couch. No worries if you’re half-asleep. You are always welcome here.” 

[1] Spencer, Danielle. Metagnosis: Revelatory Narratives of Health and Identity. Oxford University Press, 2020. 
[2] Manning, Erin. The Minor Gesture. Duke University Press, 2016. 
[3] Heiredal, Troels Steenholdt. “Autistic Architectural Approach.” PLAT, vol. 13, “Alchemy,” 2025. static1.squarespace.com/static/611838bd3f0e670d00f832f5/t/6796f49bc98eac6ba1880af5/1737946272880/Heiredal-Troels+Autistic+Architectural+Approach.pdf.  
[4] Chazan, May. “Crip Time and Radical Care in/as Artful Politics.” Social Sciences, vol. 12, no. 2, 2023, pp. 59-75. MPDI, doi.org/10.3390/socsci12020099. 

Web image from RestFest Trailer.

Change Not Charity traces the grassroots movement leading to the passage in 1990 of the Americans with Disabilities Act (ADA), the law that mandates accessibility for the disabled.  

People with disabilities have a long history of being isolated, excluded socially as well as physically from facilities that were not accessible. Beginning in the late 1960’s, Jerry Lewis’ Labor Day Telethons were watched by nearly half of the country and raised millions of dollars towards finding a cure for muscular dystrophy. But despite its good intentions, by arousing the audience’s pity of the disabled to attract donations, the telethons also heightened the distance between “normal” people and people with disabilities. 

Children were among those whose disabilities affected them in harmful ways. In one of the many interviews, Cynthia Jones describes how, at the age of five and a half, she was selected as a poster child for the March of Dimes because she was “blonde, blue-eyed, and braced.” When her teacher passed around a flyer to promote polio vaccines in class, she was horrified to see a picture of two children, one labeled “This”, the other “Not This.” Cynthia was the “Not This.” At that moment, she realized that no one wanted to be like her. In fact, many young children with disabilities were institutionalized and kept out of the public eye. 

In February 1972, reporter Geraldo Rivera’s broadcast from inside Willowbrook State School, an institution for disabled children on Staten Island, shocked the nation and helped spark the disability rights movement. At the same time, a group of disabled college students in Berkeley, with a donation from the Rotary Club, formed the Center for Independent Living (CIL), offering services which included applying for government assistance, counseling and transportation. CIL drew disabled people from throughout the country who wanted to live in a place where they could find support and practical help. Judy Heumann, a disability rights advocate who had successfully sued the NYC Board of Education when she was denied a teaching position, became the Center’s Deputy Director.  

 In 1973, an update to the Federal Rehabilitation Act was enacted to help veterans. At the end of the document there was a 46-word clause, Section 504, barring discrimination against the disabled in federally funded institutions. People with disabilities took note, but the new regulations languished unsigned until demonstrators occupied the Federal Building in San Francisco and protested in Washington DC. The demonstrations drew national attention and led to Health, Education and Welfare Secretary Joseph Califano signing the regulation into law. Years later, the passage of the Americans with Disabilities Act expanded the earlier regulation to include private institutions and businesses.  

The story of the disability rights movement has elements that resonate today. Letter-writing campaigns and connections forged with members of Congress and the Executive Branch helped garner support for pending legislation and advance the movement’s agenda. Justin Dart, Vice Chair of the National Council of the Handicapped, crisscrossed the country holding town meetings to find out about discrimination in local communities. He issued his findings in a report titled “Toward Independence,” which served as a roadmap for disability legislation. 

The Americans with Disabilities Act (ADA) was initially introduced in 1988, at which time opponents called it the bankruptcy bill because the cost of creating accessible spaces was considered too exorbitant. In Washington DC, people parked their wheelchairs and maneuvered up the steps to the US Capitol into the Rotunda where over 100 protesters were arrested. ADA was finally passed two years later in 1990 with the support of President George H.W. Bush.   

The disability rights movement led to significant change in large part because people showed up repeatedly over the years in multiple venues across the country to ensure their voices were heard. And while much has been achieved, the documentary ends with a reminder that there is still more work needed, citing that two out of three adults with disabilities are not in the work force.  

Change Not Charity, part of the PBS’s American Experience series, is a comprehensive overview of the pivotal events leading up to the passage of ADA, using archival footage of demonstrations and interviews with participants, Congressmen, and legal advocates. The documentary is directed by Jim LeBrecht, who won the Academy Award for his previous documentary Crip Camp, a more personal documentary, with its focus on some of the key people in the movement beginning with their experiences at the sleepaway camp. Both documentaries provide insight into the struggles faced by the disabled and the efforts to advance disability rights.  

Change Not Charity Film Trailer

CHANGE NOT CHARITY  

Director: Jim LeBrecht 
Narrator: Peter Dinklage
A STEWARD/GAZIT PRODUCTIONS FILM FOR AMERICAN EXPERIENCE 2025 
RT 53 minutes 

Crip Camp: A Disability Revolution 

Carol Schilling Jan 3, 2025

A powerful film celebrating disability rights, resilience, and community, revealing untold struggles and triumphs that demand greater recognition and action

Located near Woodstock, geographically and culturally, Jened offered a space free from the discrimination the summer residents encountered elsewhere. Campers engaged in uninhibited physical activities, uncensored storytelling, self-governance, mutual caretaking, real friendships, irreverent insider humor, romance, and fun. One powerful, sobering scene allows viewers to overhear campers with diverse disabilities share common experiences: being disrespected or ignored at school, overly protected at home, isolated everywhere. Another tracks the campers’ hilarity and pride over an outbreak of “crabs.” One camper declares his counselor’s demonstration of how to kiss, “Best physical therapy ever!”  

The second and longer part of the film follows several former campers into their adult lives. They become parents, spouses, professionals, and disability rights activists at a crucial historic moment for disability legislation. Both parts of the film propose that the liberty and solidarity experienced at Jened emboldened several of the campers to seek opportunity and equality in the world beyond their camp. 

While former camper Jim Lebrecht narrates the film, Judy Huemann—who died in 2023—is its political and moral center. A wheelchair user, Heumann rose from Jened camper to counselor. Campers revered her for successfully suing the New York City Department of Education for the right to teach. When she and several former campers unexpectedly reunited in Berkeley, California, they participated in the Independent Living Movement that famously started there. An astute leader, Heumann inspired an astonishing 25-day sit-in at the Department of Health, Education and Welfare (HEW) offices in San Francisco’s Federal Office Building in 1977.  She and her disabled colleagues risked their health and their lives—they slept on the floor and improvised medical necessities—to convince HEW to enforce the anti-discrimination section of the 1973 Rehabilitation Act: Section 504. Heumann’s uncompromising standoff with the HEW representative is unforgettable. As is her daily urging for the occupiers to hold fast. Regular deliveries of food, supplies, and solidarity from the Black Panthers and other marginalized groups fueled the protesters’ determinism and ultimate success. 

In other archival footage, Heumann, demanding accessible taxies, leads demonstrators to gridlock traffic in New York City intersections. Still other protestors abandon their wheelchairs and pull themselves up the steps of the U.S. Capitol to insist on disability civil rights. Recently filmed interviews with several former campers affirm that, despite the work toward disability justice that remains, they live fuller, more vibrant lives as a result of their camp experiences and the legislation they demanded.  

Crip Camp is an indispensable film because it’s told from the rarely seen perspective of disabled teenagers . The Jened campers’ irrepressible personalities, candor, and accomplishments demolish stereotypes about disability. It’s simultaneously painful to confront the inhospitable world they had to navigate and still do. The film’s co-directors, Jim LeBrecht and Nicole Newnhan, prompt us to ask why histories of the civil rights projects of the’ 60s to ‘70s have largely ignored the struggles and successes of disability activists. Yet as Crip Camp raises awareness of the “nothing about us without us” campaigns for disability rights, it also makes me restless for more documentaries. Without doubt, we have more to learn about the history and politics of the passage—and enforcement—of laws through the 1990 Americans with Disabilities Act and its 2008 Amendment.

Crip Camp: A Disability Revolution 
Directed by Jim LeBrecht and Nicole Newnhan 
Higher Ground Productions: 2020, RT: 104 minutes 

For more information about Crip Camp and its Impact Campaign, please visit https://cripcamp.com/