“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.” 

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/

I am glad to report that Playground is a success on this count. In this most recent novel, Powers turns to the ocean as a backdrop for his story. He weaves together the narratives of three main characters. Todd Keane, who is the son of a successful businessman, grows up privileged in upper-crust Chicago. As a high school student in a top-tier private school in the 1970s, he is captivated by the relatively crude computers of the time, mounts the technology wave and feverishly rides it to professional success as an adult. Evie Beaulieu is literally and figuratively thrown into the water at a young age by her father, a deep sea explorer, and becomes obsessed with everything watery. She is more comfortable swimming deep beneath the ocean surface than walking on land. With the support of a gentle and self-effacing husband, she becomes a world famous oceanographer who achieves renown because of her ability to convey the magic and mystery of the ocean equally well to her scientific colleagues and young adult readers, echoes of Richard Powers himself. Finally, Ina Aroita grew up on the Pacific island, Makatea, but moved to the United States to pursue studies in the creative arts and becomes a sculptor. In college, she meets Todd and through him she is introduced to an important fourth character, Rafi Young, who pulls together the Keane-Aroita story lines.

Rafi grew up in the Black neighborhoods of South Side Chicago. He is a voracious reader from the first day of school and, defying the odds,  wins a scholarship to attend the same high school as Todd Keane. They meet over intense games of chess, advance to the ancient addictive game of Go, and develop a powerful but vulnerable friendship. They both choose to go to college at the University of Illinois, and Ina is drawn into their orbit.  Powers pulls all of these characters into a tight web that centers on the ambitious plan of an American company  to build a self-sustaining city that will launched from Makatea and will be submerged under the surface of the water. The residents of the island are being asked to weigh the pros and cons of the “seasteading” initiative and decide whether to approve it. The rationale offered by the proponents is that life in such a unique environment will enable the occupants of the submerged city to live in a realm outside the jurisdiction of any company and be free to pursue their intellectual pursuits and dreams about expanding the use of artificial intelligence, free of government interference and restrictions.

Extreme libertarianism meets AI wonderland.

Powers populates his literary world with characters we come to know well and grow attached to. It is a strength of Playground that they are believable and not simply spokespeople for a point of view. Powers explores many themes in this book. Games, those that people play casually for leisure, like chess, and those that they play intensely for success in life figure prominently in the novel. Todd and Rafi’s obsession with the ancient board game of Go, with its infinite number of possible outcomes branching out from a simple 19×19 linear grid, becomes an incubator for their ideas about computing capacity. Go provides an alluring framework to explore human behavior and model it for use by programmers of life-like computer surrogates. The game provides the initial inspiration for Todd to design powerful AI systems that can mimic humans and beat them at their own games. There is an appreciation of the growing potential for unpredictable outcomes as computer systems become more complex, machine learning diversifies, and neural networks become denser. The example that most impresses Keane (and Powers) involves the game of AlphaGo, an actual computer program, which was designed to play Go at championship level. Todd recounts his feelings of awe when the program  made an inexplicable move in a game against Ke Jie, the number one ranked player in the world at the time, that sealed the computer’s victory in a three-game match. This was something that was thought to be beyond the power of any computer (this same episode features prominently in the book Maniac by Benjamin Labatut).

In this novel, the inventiveness of nature and the unpredictability of human interactions far surpasses anything that AI accomplishes. The complexity of the natural world, its wondrous diversity, its unexpected vitality, is captured in incandescent prose as Powers describes the glowing colors of the deep-sea creatures. Can and will computers achieve a sense of stewardship and legacy? Will they develop an attachment to the environment around them and struggle to sustain it and pass it on whole to the next generation of computers in the same way that links people across and with future generations?

The novel reaches a climax and the ending involves an unexpected plot twist. The book is too much of a fun read for me to reveal it and spoil it for you. One hint — keep in mind that Todd Keane is an extraordinarily complex person. That said, what is striking is how marginally AI actually influences the actual outcome of the novel. It is more of a gadget play than an active player in the narrative. It is as if Powers himself is unsure how AI will impact those of us alive today and the generations that will come after us. If this is true for Powers, then it suggests that all of us should stay modest in our predictions of the future of AI. Reading Playground, I think he would remind us to keep in mind that however things turn out with AI, it will probably work out best if we remember the grandeur of nature and the human capacity to care deeply for one another and our environment, qualities that Powers describes with an expansive intelligence and poetic beauty.

Playground
Richard Powers
W. W. Norton & Co.2024.
381 pp (paperback)

Web image by Medhum.org

View poem from Poetry Foundation

This beautiful poem in The Collected Poems of Theodore Roethke appears in a section called “Sequence, Sometimes Metaphysical.” It is a penetrating rendering, at one and the same time, of “pure despair” and of transcendence; of the curse and simultaneous exaltation of heightened awareness; of the personal experience of “madness,” “my shadow pinned against a sweating wall,” “the edge is what I have,” and of a more profound soul-searching that contemplates union with nature and with God: “I climb out of my fear / The mind enters itself, and God the mind, / And one is One, free in the tearing wind.”

Roethke, a Pulitzer Prize winning poet, suffered from manic depressive illness. This poem is remarkable in conveying a life experienced between extremes and at the edge; we might even recognize elements here that surface from time to time in ourselves. But the poet probes beyond mere personal anguish and that is, perhaps, how he survives.

A Film about Theodore Roethke from PublicResource.Org

Remarkable People – Theodore Roethke by Seattle Colleges Cable Television

The Collected Poems of Theodore Roethke
New York: Doubleday, 1966, 270 pages

An earlier version of this review was published in the NYU Literature, Arts, and Medicine Database (Litmed).
Web image by Anchor Lee 

Paul Harding uses this disquieting episode as the basis for his latest novel, The Other Eden. Harding is the author of Tinkers, his debut novel which was published in 2009 by Bellevue Literary Press. That book was awarded the Pulitzer Prize, a unique achievement for a book that had been published well outside of the mainstream. His setting is called Apple Island, and the founders are Benjamin Honey, a freed slave, and his Irish wife Patience Raferty who arrive on the island in 1792. They survive a monstrous storm and flood in 1815 and together with a handful of families build a community that over the next 100 years is able to endure and thrive in the face of the harsh elements that confront them.

The descendants of the Honeys are the most prominent characters in Harding’s narrative. The current matriarch, Esther, spends most of her time brooding in a rocking chair, keeping watch over her family, and vigilantly guarding a secret about her son, Eha. Eha is a carpenter, who partners with another resident on the island to build all of the homes for the residents; this partner is an older man who lives alone sheltered inside a hollowed-out tree and who has carved an intricate circular mural that coils upward along the trunk of his home.  Ethan, Eha’s 15-year old son, is a precociously talented artist who is alert to nature and his surroundings and constantly putting images to paper. His two younger sisters are always on the go and playing with the children of three other families.

The outside world intervenes in this quiet secluded world when a team of officials from the neighboring town of Foxden on the coast comes to Apple Island with a mission — to investigate the health and well-being of the inhabitants. They are primed by an entrenched belief that there are certain people in society who are innately better and the consequent dangers of mixing races and inbreeding over several generations. With this in mind, the town representatives conclude that it is in the best interest of all concerned to condemn the Apple Island village and disperse its inhabitants. This is the only solution that they believe will prevent future generations from being adversely affected by the downward spiral of human intellectual and moral capacity and that will avoid the spread of this social contagion beyond the confines of the island. Interwoven with this depressing storyline, there is an effort by a local minister to rescue Ethan from Apple Island because he is very fair-skinned. He may be able to pass as White and his artistic talent may enable him to overcome his “flawed” racial beginnings. Needless to say, the path to a tragic ending is patiently laid out by the author. But Harding’s genius is to make us appreciate the deep humanity and abiding love that the inhabitants of Apple Island sustain even though they cannot escape the colony’s ultimate demise.

A plot summary cannot do justice to the beauty and power of Harding’s prose. His principal characters are simple people living  a subsistence existence. But they are embedded in a lushly evoked environment, and they are attuned to the rhythms of nature and the cycles of daily human life. The emotions are deeply felt, and the action rings true; the inhabitants of the island are not cardboard heroes or angels. There is a threat of violence lurking just below the surface that can emerge with shattering force when triggered by unexpected events.

Ethan’s story is presented as a complex mixture of personalities and motivations. The minister who comes to Apple Island to tutor the children and who devises the plan to rescue Ethan from life on the island recognizes the remarkable native intelligence of his school-age pupils, one who is literate in Latin, another who has mastered geometry. But he painfully admits in his private journal to deep feelings of revulsion when he is surrounded by the black and mixed race children in school. When Ethan is relocated to the home of a wealthy family on the mainland to continue his art education, he becomes more than friends  with one of the servant girls, Bridget. There is a familiar element to their story, but the last stage is surprising and moving in its depiction of devotion and steadfastness in the face of love and separation. Ethan’s fate is mysterious, but his drawings live on in museum exhibitions.

The underlying motivations of the mainlanders who come to survey the living conditions of the people on Apple Island are clothed in their seemingly noble aspiration of improving the lot of humanity.  They use the language of social Darwinism to defend their eugenics agenda, and this is no simple literary plotline. The eugenics movement in the United States was widespread and widely accepted; the nation became obsessed with the concept of “fitter families” and the dangers of reproduction of the unfit, and over 60,000 “feeble minded” individuals were involuntarily sterilized in early twentieth century America. The horrible consequences of flawed science and mistaken beliefs about biology and intrinsic human worth are made abundantly clear. But Harding’s writing rises above formulaic condemnation or pedantic instruction to the reader. He makes you live the experience and the suffering of the islanders whose humanity is so grossly ignored by the team of experts sent to learn about them and then deal with them.

Many reviewers of The Other Eden have commented on the mythic nature of the book. I think they sell Harding short. I think his accomplishment is far greater. His writing is almost Biblical in nature,  in the sense that Marilynne Robinson describes biblical writing in her recent book Understanding Genesis (Farrar, Strauss, and Giroux, 2024). In that work, Robinson marvels at how all of the events that unfold in Genesis occur under divine guidance and plans, yet  the men and women maintain their independence to act and influence their fate. God and  humankind are in a covenantal relationship. Each has the capacity to surprise, to rise above their circumstances, defy expectations and even act out of love and forbearance when circumstances might dictate revenge and retribution. Similarly, Harding’s literary world is infused with the powerful belief in human agency and decency, concepts in direct counterpoint to the biologic determinism to which the mainlanders subscribe

The Other Eden evokes many Biblical narratives and themes. Apple Island grows out of a flood and the inhabitants are dispersed after the decision is made to end the colony. There is demonic evil and the threat of servitude, with the image of an enslaving Pharaoh lurking over the heads of the investigators from Foxden. There is branding at birth, deception of elders, scheming to save a favored child, and banishment of a disgraced woman. Noah, Abraham, Jacob, Moses, Pharoah, and Ruth are hovering over the residents of Apple Island. Harding uses all of these archetypal tropes and personalities. But like all good Biblical narratives, the images serve to construct a human world that speaks to all of us. The Other Eden is more than a foundation myth. It is a chronicle of living.

THIS OTHER EDEN
Paul Harding
W.W. Norton and Co.
2023
221 pp (paperback)

Web Photo by Seth Dewey