Tuner follows Niki White (played by Leo Woodall), the apprentice of piano tuner Harry Horowitz (Dustin Hoffman), and a tragic genius. Once a gifted pianist, Niki developed hyperacusis—an increased sensitivity to sound that prevents him from playing the piano and requires him to wear hearing protection at all times. After Harry forgets the combination to his safe, Niki teaches himself to open it by listening to the lock’s subtle sounds. When Harry is later hospitalized, Niki begins cracking safes to pay off his mentor’s mounting medical debt.

By the film’s second act, Niki’s increasingly dangerous work jeopardizes both his safety and his relationship with his girlfriend Ruthie (Havana Rose Liu), leaving him to confront the consequences of his actions. When Niki makes amends in the third act, Uri (Lior Raz), the leader of the criminal group in which he has become entangled, viciously beats him. The injury costs him part of his hearing but enables his return to the piano.

Tuner is engaging, beautifully constructed, and emotionally resonant. At the same time, it turns disability into a plot device. Marking director and co-writer Daniel Roher’s fiction debut, the film fully embraces the artistic license afforded by the genre, casting hyperacusis as a superpower rather than focusing on the condition’s often debilitating effects.

To be fair, Niki mentions that, at one point, even the sound of his own voice was agonizing. He is constantly on guard against potentially harmful sounds. When confronted with barking dogs, smoke alarms, air horns, and gunshots, he winces and clutches his ringing ears.

But the impact is fleeting. In real life, exposure to noises like these can permanently worsen hyperacusis. Furthermore, the hearing disorder is not a “superhuman” tool; many individuals with hyperacusis show normal hearing thresholds. For those with milder cases, everyday sounds like a running dishwasher can cause significant discomfort. In more severe cases, even near silence can be excruciatingly painful. One wonders how Niki could tolerate the clicks, clacks, and whirs of piano keys and combination locks (another creative liberty: modern safes are designed to thwart auditory decoding).

As disability studies scholar Rebecca Garden argues, there are “tensions between the lived experience of illness… and the conventions that shape the representations of those experiences in published narratives.” [1] In other words, the demand for drama often precludes verisimilitude, instead favoring a happy ending of triumph over adversity. Niki’s liberation from his condition is narratively satisfying; another, if less commercially successful, film might depict a similar character learning to live with it.

In his seminal text The Wounded Storyteller: Body, Illness, and Ethics (2013), sociologist Arthur Frank enumerates three types of illness stories: restitution, chaos, and quest. The restitution narrative “has the basic storyline: ‘Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again,’” the chaos narrative “imagines life never getting better,” and the quest narrative “accept[s] illness and seek[s] to use it.”

Tuner follows a kind of restitution storyline: Yesterday Niki was a healthy prodigy, today he cannot perform because he is sick with an exploitable “superpower,” but tomorrow a thief will effectively cure him by rupturing his eardrums. The film also features aspects of the quest narrative; to quote Frank, Niki “returns as one who is no longer ill but remains marked by illness”—that is, no longer hyperacusic but partially deaf. Niki is figuratively reborn with a new purpose, embodying the film’s Spider-Mannish moral logic: “With great power comes great responsibility.”

Despite these quest elements, Niki’s story remains fundamentally a restitution narrative. Frank notes that such narratives are “culturally preferred” and calls for “an enhanced tolerance for chaos.” To that end, future films might engage more directly with the lived experience of hyperacusis. Ultimately, however, Roher’s approach is understandable and even commendable, using the possibilities of cinema to draw attention to some of the challenges of a rare, if romanticized, disability.

[1] Garden, Rebecca. “Telling Stories about Illness and Disability: The Limits and Lessons of Narrative.” Perspectives in Biology and Medicine, vol. 53, no. 1, 2010, pp. 121–135.

Photo credit: Black Bear

“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.” 

Daudet tried all sorts of therapy, including mashed bulls’ testicles and elixir of guinea pig. Nothing worked, with the exception of large quantities of morphine and chloral hydrate, which made his life bearable. Daudet also coped with his intractable pain by writing about it. He planned to write a complete memoir of his life with pain, but by the time of his death in 1897, he hadn’t gotten farther than 60-odd pages of notes and reflections. About twenty-five years ago, the English author Julian Barnes translated and collected these fragments into a small jewel of a book called In the Land of Pain.¹

The title is illustrative. Those who suffer from chronic pain live in a different country from the healthy, and they gradually find themselves speaking a language that others don’t understand. At first, Daudet introduces details of his discomfort into conversation but soon realizes how repetitive and boring this is to his friends. “Pain is always new to the sufferer,” he writes, “but loses its originality for those around him. Everyone will get used to it, except me.” (p. 19) Daudet finds himself living in a land where suffering is pervasive, “Pain finds its way everywhere, into my vision, my feelings, my sense of judgment; it’s an infiltration.” (p.23) Toward the end he writes, “I’ve passed the stage where illness brings any advantage or helps you understand things; also, the stage where it sours your life, puts a harshness in your voice, makes every cogwheel shriek.” (p. 65)

Although Daudet was not known as a poet, many of these presumably random notes are, in fact, miniature poems. Consider this example: “In the dining room: the man who quite suddenly finds himself unable to read the menu. His wife bursts into tears and leaves the table…” (p. 63) And here is another: “The hotel. The bell-board. The bath times. / Solitude. / Encroaching darkness.” (p. 65)

One of the more depressing aspects of medicine today is the fact that many doctors are still “very poor at discerning things,” at least when it comes to pain. I get a knot in the pit of my stomach whenever I hear a resident discussing whether a patient’s pain is “real” or “imaginary,” or making a cynical comment about drug seeking behavior, especially when the resident herself has prescribed a grossly inadequate course of analgesia. Some of my colleagues believe that a person has to be visibly anguished before they take seriously his reported experience of severe pain. And others get exasperated with patients who describe having more pain than their condition (according to the doctor) warrants, and tell them, “You’re overreacting,” or “It’s all in your head.” When I hear this, I want to shake the physician by their shoulders and yell, “Of course it is! All pain, no matter what causes it, exists in the head. Where else could the experience be generated?”

In the Land of Pain illustrates that chronic pain sufferers can live calm, productive lives despite constant agony. Daudet continued writing, publishing, and socializing until the end of his life, even though he wrote, near the beginning of his journal, “My friends, the ship is sinking, I’m going down, holed below the water line.” (p.7) At the same time, the author’s strength, compassion, and humor illuminate his little book. He emerges as a generous person, who was well loved by his contemporaries. If you were his physician, what would your assessment be?

Would you accuse him of exaggerating his pain because he doesn’t appear desperate?

Daudet refers to his pain as an “unwanted guest,” to whom he intends to give “no special attention.” (p. 79) At another point he reflects on “the ingenious efforts a disease makes in order to survive.” (p. 26) The writer never questions his enemy’s ultimate victory, but neither does he turn in upon himself. He remains a source of joy to others, especially his family, as indicated in this note: “I only know one thing, and that is to shout to my children, ‘Long live life!’ But it’s hard to do so while I am ripped apart by pain.” (p.49)

Chronic pain remains challenging for doctors to treat. One set of barriers are the moral and legal concerns about overuse of opioid analgesics. Questions about the threat of addiction, or the possibility of being manipulated, favor resisting the patient’s suffering, rather than responding with compassion. Many are uncertain about how to proceed because they lack knowledge of treatment protocols that include nonpharmacologic modalities, or referral to pain control clinics for invasive procedures. Alphonse Daudet’s little book invites us to imagine ourselves living, at least for a little while, in the land of pain.

1. Daudet A. In the Land of Pain. Edited and translated by Julian Barnes. New York, Alfred K. Knopf, 2002. (page numbers indicated in the text).

Photo of Alphonse Daudet from Wikicommons.

At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal. The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. “Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing.” Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, “I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . “

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, “normal.” Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. “The journey back to my face was a long one.”

Unfortunately, Lucy’s story does not end here. At age 39 she committed suicide. Soon after, her close friend, writer Ann Patchett, wrote a book about their friendship, Truth & Beauty: A Friendship, published in 2003 (HarperPerennial).

Lucy Grealy Interview in 1994 (20 Min.)

Autobiography of a Face
Lucy Grealy
Houghton Mifflin 1994 Boston: 256 pages

1995 Whiting Award Winner in Nonfiction , Poetry: https://www.whiting.org/awards/winners/lucy-grealy
Web image generated from the book cover by Medhum.

The house sits at the foot of a spring-green mountain, painted over with long cascading strokes of darker green, giving the impression of a verdant and peaceful setting. Contrast this to the brown ridge where the figure is sitting, huddled in a long sleeve jacket, hands tucked into pockets. The ridge is barren except for a single tree that is mostly bare branches with sparse pale-pink leaves.

Matthew Wong was a rising young painter who died of suicide on October 2, 2019. In a moving obituary by the New York Times, his mother explained that Mr. Wong “was on the autism spectrum, had Tourette’s syndrome and had grappled with depression since childhood.” This helps to explain the sense of isolation and longing in the painting, depicted by the solitary figure on a barren ridge, looking back at a house in lush green surroundings. The figure also appears to be physically cold, wrapped in long sleeve coat, hands tucked in pockets, with no skin showing, but is sadly separated from shelter by an icy white distance. This dynamic, amidst a landscape of majestic mountain rising into star-crowded sky, gives a sense of melancholy beauty and loneliness.

The title of the painting, “See you on the Other Side,” can be interpreted in numerous ways. Mr. Wong is known for incorporating mythical elements into his work, so is this the beginning of the hero’s journey? If the tree in the foreground is interpreted as being laden with pale pink flower buds, there is a sense of hope and promise that the figure is leaving home and will return triumphant on the other side. But the tree can also be seen as a representation of fall transitioning into winter, hanging onto a few withered leaves, as the last bright red autumnal leaf blows away. Is the figure heading away from the verdant house and mountain into winter, the season that classically symbolizes death? Does the other side refer to an afterlife? A third interpretation to consider is that the figure is not leaving the house, but actually trying to get there. In this case, on the other side would refer to crossing the vast white expanse where no path is marked and no help is in sight.

View the painting at Museum of Fine Arts Boston ➔

Matthew Wong’s Biography: www.matthewwongfoundation.org/biography
A previous version of this review was published in the NYU Literature, Arts, and Medicine Database.
Web image from www.matthewwongfoundation.org/

At age 18, Frida Kahlo suffered a catastrophic accident that had lifelong consequences. The school bus in which she was a passenger collided with a trolley. Her spinal column was broken in three places, as were her collarbone, two ribs, her right leg and foot. The treatment was to lie on her back for one month, enclosed in a plaster cast. In addition, Kahlo had polio as a child, and one leg was shorter and thinner than the other.

This stunning portrait demands the viewer’s attention. A woman, Frida Kahlo, looms in the foreground, central to the painting, facing the viewer fully frontal, a few tears spilling down her face. She is nude, except for a sheet that is wrapped around her foreshortened lower body, and the widely spaced straps of an upper-body corset. On the one hand, the figure is passive, gazing at us almost without expression, completely still, acceptant of the scattered nails and rigid column that penetrate her body. On the other hand, the beauty of her perfectly formed breasts and well-formed upper body, the eyes that engage the viewer, subtly convey the energy of the figure’s spirit and will. At this point in Kahlo’s life, the painful physical problems that had plagued her on and off for years were becoming unrelenting. Doctors prescribed a variety of orthopedic corsets to support her degenerating spine. The portrait seems to personify pain and simultaneously some level of tolerance for pain.

Many who view the painting are reminded of images of Christ on the cross. Kahlo was certainly long-suffering and represented the physical and emotional aspects of her condition in many of her works (for example, “Tree of Hope” and “Henry Ford Hospital“), but the energy and originality of her personality and artistic vision shine through. For interesting commentary on “The Broken Column,” see Hayden Herrera. Frida Kahlo: The Paintings (New York: Harper Perennial) 2002, pp. 180-183. Also useful is Gannit Ankori’s commentary in her book, Imaging Her Selves: Frida Kahlo’s Poetics of Identity and Fragmentation (Westport, Connecticut and London: Greenwood Press, 2002, pp. 114-119). Ankori points out that the vertical fissure of Kahlo’s body and the fissures in the earth surrounding her evoke violation — consistent with Kahlo’s statement that a metal rod had entered her hip and penetrated her vagina.

Web image from Wiki Commons

According to actor and dramaturg Anne Gridley’s neurologist, humans can only consciously attend to walking for about eight seconds before the act slips into muscle memory. Yet Watch Me Walk, written by Gridley, challenges us to spend nearly two hours thinking about walking. 

The autobiographical play begins with the veteran experimental performer pacing the stage in rose-adorned combat boots—more useful, she later notes, than $7,000 custom orthotics—and near silence. The sense that something might happen eventually ebbs into boredom. Why turn foot drop, the dragging of the front foot, into a spectacle? 

Before long, Gridley deliberately falls and then asks the audience to offer help—and to accept her refusal. Later, she presents a slideshow on her 20 colorful walking sticks; some of their names are Dorothy Parker, Tonya Harding, and Gabagool. At one point, wearing a ballgown made of caution tape reading “fall risk,” she ascends a ladder. She sings, “I’m climbing on a ladder, and it’s making you feel nervous—and yes, that is the point.”  

Directed by Eric Ting, Watch Me Walk educates non-disabled viewers and invites them to confront their discomfort. “Maybe don’t say ‘spaz’ anymore; that word describes the way I walk,” Gridley told Culturebot. “So every time you just casually say, ‘I was spazzing out,’ I want you to think of me walking back and forth stiffly across the stage.” 

Gridley is having fun, too, even as she, at other times, fights back tears. Full of tonal turns, the production is at once cringey, candid, wacky, and whimsical. Through a series of loosely connected but ultimately moving vignettes, Gridley chronicles her life with hereditary spastic paraplegia (HSP), probing tragic family narratives, ableist encounters (“It was a woman, so I didn’t punch her in the face”), and health insurance struggles (“Viva Luigi!”). 

She dramatizes her neurodegenerative condition—shared by her mother and grandmother—by dressing as a gigantic purple nerve cell and as Little Orphan Annie, wryly highlighting the chronic disregard for so-called “orphan diseases,” whose rarity limits research and pharmaceutical attention. 

Observed annually on the last day of February, Rare Disease Day is an international effort to expand access to healthcare, diagnosis, and therapies for people with rare diseases. Although Watch Me Walk closed its in-person run on February 15, a recording of the play will stream for one week starting on February 28. The same day at 3:00 p.m. EST, the Spastic Paraplegia Foundation (SPF) will host a Rare Disease Day online forum on HSP and Primary Lateral Sclerosis, featuring patients, families, researchers, and advocates. 

Soho Rep, where Watch Me Walk was staged, hopes that streaming the play alongside SPF’s virtual event “will create a coordinated awareness moment,” showing how “storytelling, dialogue, and science together help humanize rare neurological diseases while advancing the pursuit of effective treatments and a cure.” 

Photos by Maria Baranova

WNYC: Under The Radar’s “Watch Me Walk”

“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.

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization. After a second hospitalization, her college washes its hands of her. Hitting roadblocks time and time again requires her to rebuild her life over and over. This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness. The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders. As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).   

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent. I can dress and daub when psychotic and when not psychotic. I do it with zeal when manic. If I’m depressed, I skip everything but the lipstick. If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).   

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring. In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis. And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students.  

This is a special and rare book. As with Elyn R. Saks in The Center Cannot Hold, Wang’s disability seems not to have robbed her of her cognitive faculties, resulting in a sense of lucidity. Yet, at the same time, we are never far from madness. As a result, the essays glisten like polished jewels while the author’s voice retains the air of authenticity.   

While Wang has understandably had ambivalent experiences, in every case where The Collected Schizophrenias might have lapsed into an anti-psychiatry rant, the author instead considers a range of perspectives. She is devoted to taking her medication, yet she open-mindedly explores alternative therapies, spirituality, and even the notion that her illness might have bestowed talents or some evolutionary advantage on her.   

We should not have to be reminded that once civilians become patients they do not lose their intelligence. Wang writes that “a primary feature of the experience of staying in a psychiatric hospital is that you will not be believed about anything” (p. 98). Indeed, when she is asked how she is doing and she replies she is doing well, she is said to be lacking in insight. At other times, she is advised by certain well-meaning people that given her diagnosis “I should be proud of how coherent I am” (p. 54), and by others “who don’t believe in mental illness… that in other cultures, a person who would be diagnosed with schizophrenia in the West might be lauded as a shaman and a healer…They are likely to be the type who boast about never taking aspirin for a headache” (p. 23).  

There are many insights to be found in this book that should prove eye-opening to mental health practitioners. It should be required reading for anyone who wants to understand the experience of having an illness.   

Publisher Graywolf Press 
Place Published Minneapolis 
Edition 2019 
Page Count 202 

Web image from Wikicommons
An earlier version of this review was published in the NYU Literature, Arts, and Medicine Database. 

Before modern medicine, superstition mediated pregnancy and childbirth. Once, divine wrath or distressing mental images risked what was called a monstrous birth. To reduce risk today, pregnant women consult prophetic prenatal technologies and the ceaseless cacophony of digital media. Twice pregnant, New York Times pop culture and internet reporter Amanda Hess found herself both drawn to and repelled by media advice and the collection of data enticed by apps or insisted on during clinical encounters.  

Her book Second Life: Having a Child in the Digital Age—part wry memoir, part savvy investigative reporting—asks whether current technologies deliver a better, if not perfect, baby or the maternal well-being they augur. She, even more significantly, worries about the consequences, personal, relational, and ethical, of pursuing perfection.  

Hess couldn’t resist interacting with chatty, advice-giving apps. One first tracks her fertility and then, in weekly installments, shows her what a developing “creepily realistic CGI fetus” looks like. (Another app likens fetal development to the temptations on Parisian bakery shelves. A macaron, for instance.) Visual creepiness aside, Hess has unsettling thoughts about surrendering intimate information about her body to unknown recipients. She discovers that a popular app she regularly consults was developed by two brothers in Belarus backed by venture capitalists. Its surveillance exposed her to endless marketing schemes that hardly considered anyone’s well-being or financial resources. Curious about the history of fertility tracking before and after apps, Hess discovers a throughline of troubling eugenic ideologies. It travels through the advice of a popular pregnancy influencer. 

Deep into Hess’s first pregnancy, a “concerning” routine ultrasound detected what could be Beckwith-Wiedemann syndrome (BWS), a rare genetic condition. Its possibility sent Hess anxiously scanning the internet, against her doctor’s advice, for medical information and possible maternal causes. Was it the wine? The Ativan? A fever? Her age? Unspecified guilt followed. But neither the internet, genetic testing, nor her doctor could reassure her about a cause or the possible extent of the condition. The internet images she sought of children with the full range of BWS anomalies hardly quelled her anxieties. Only after her son’s birth was a form of BWS confirmed.  

Hess sympathizes with the wish to deliver a healthy baby and the temptation to seek any available service or technology to that end. After all, that’s what she wanted. However, the prospect of birthing a child with an anomalous body leads her to question the meaning of the ubiquitous parental qualification: “As long as the baby is healthy.” Healthy, she finds, translates to normal. Anticipating a not-normal child makes her feel protective of her son even before his birth. After it, she deflects thoughtless remarks from strangers about his enlarged tongue protruding from his lips. (Corrective surgery later enables less compromised breathing and speech.) She and her husband care for and about him for the distinct person he is. About her initial anxieties about his body, Hess writes, “My nightmare . . . ended when I met my son.”  

Hess’s standout chapter “Growth” recounts her evolving response to her son’s imperfections and her efforts to manage others’ IRL and internet responses to him—a task she finds essential to parenting him. I hope this chapter is widely read, certainly by future parents, but also by clinicians, genetic counselors, and those who teach them.  

Some accounts of caring for an imperfect child cast the child and the parental relationship as special. Some view chronic illness or disability as a familial burden. Hess does neither. Instead, she folds caring for her son into the course of her life and her family’s. In that way, she continues a contribution of Michael Berube’s complicated 1996 Life as We Know It, however, adding a millennial’s navigations of current medical technologies and media static. Hess further envisions a world that participates in the care of all children, one that refuses to blame or isolate families with less-than-perfect children. That world would reduce parental anxieties more than screening for concerning “problems.” Philosopher of care and mother of a profoundly disabled child, Eva Kittay, would agree. 

Some readers might say that Amanda Hess’s financial and other resources make her generous perspective possible. She agrees. She’s half of a two-parent family. As journalists, she and her husband have more flexible schedules than countless other parents. But in the world Hess encourages, parental status would be irrelevant to their child’s care. 

Without being prescriptive, Hess’s lively, self-reflective story provokes readers to think twice about rejecting imperfect children—anyone’s—and to notice the eugenic logic underwriting rejection. Her book tests the claim that ever-evolving technologies enhance maternal well-being, empower parental choice, and guarantee healthy babies. (Ironically, a researcher Hess encountered reported on increasing evidence of BWS in IVF conceptions, many intended to screen for anomalies.) In fact, far more children are permanently harmed during their lives than are born ill or disabled. Rather than relying on the billion-dollar industry of prenatal testing, aren’t we better off, Hess asks, accepting and taking better care of all children however they’re born? 

Second Life: Having a Child in the Digital Age
Amanda Hess  
Doubleday, 2025, 272 pages