We will be screening Sop’s new film, We Year, in collaboration with our pals at RestFest and The Remote Body, online from 15th to 28th June.

We Year is a mixed media, moving-image (love) letter to others with energy-limiting conditions. Using 16mm direct animation, archival & new footage, poetic voiceover, and an ethereal soundscape, artist Sop immerses the viewer into the both isolating and unifying experience of a chronic illness flare during a hot summer indoors.

The artist ends with a message of solidarity: that we do not walk this path alone, even if we often are alone.

We Year was commissioned by Shape Arts as part of the 2024 Adam Reynolds Award programme.

About the Artist:
Sop (they/them/theirs) is a torn and crooked leaf, a root embedded in the dirt, a shoot reaching to the sky. An artist working in crip time with words, sound and moving image.

Register for tickets to watch the film on the eventive website, which are priced as Pay What You Can. Once you begin watching We Year, you will have 14 days to finish it.

Join us for a special edition of Crip Film Club with RestFest Film Festival and The Remote Body on Sunday 28th June from 6pm to 8pm UK time. We’ll watch Sop’s film together, followed by an informal Q&A with the artist and a broader chat about the film. More details will be shared on the ORT Gallery event page soon.

In response to the film, Char Heather of ruc & the remote body will be hosting an online writing workshop Permeable Body, Porous Time, on Tuesday 16th June from 2pm to 4pm UK time. This three-part creative workshop is Pay What You Feel, and you can read more and get your tickets on the Eventbrite website.

The first part will introduce the workshop with some warm-up exercises, the second will discuss inside/outside in physical spaces and bodies, followed by a writing exercise, and the third will focus on time, particularly crip time, with more writing! We recommend watching the film before attending the workshop to get the most out of attending.

Keep your eyes peeled for more announcements and, in the meantime, we can’t wait to see you at the movies!

This event is part of the larger We Year Programme, a series of interdisciplinary events and workshops inspired by and responding to the themes of the film We Year by Sop, held by various crip and disabled friends and allies, including RestFest, The Remote Body, as well as Resting Up Collective x ORT Gallery via the Crip Resistance II programme.

resilient see Elastic

elastic, resilient, springy, flexible, supple mean able to endure strain without being permanently altered or injured.

Elastic implies the property of resisting deformation by stretching <slacks that come with an elastic waistband>. ant rigid

Resilient implies the ability to recover shape quickly when the deforming force or pressure is removed <a good running shoe has a resilient inner sole>.

Springy stressed both the ease with which something yields to pressure and the quickness of its return to its original shape <the cake is done when the top is springy>. ant rigid, springless

Flexible applies to something which may or may not be resilient or elastic but can be bent or folded without breaking <flexible plastic tubing>. ant inflexible

Supple applies to something that can be readily bent, twisted, or folded without any sign of injury. <shoes made of luxurious supple leather>. ant stiff

rigid

1. see STIFF

2. rigid, rigorous, strict, stringent mean extremely severe or stern.

Rigid implies uncompromising inflexibility <the school’s admission standards are rigid>. ant lax

Rigorous implies the imposition of hardship or difficulty <the rigorous training of the recruits>. ant mild

Strict emphasizes undeviating conformity to rules, standards, or requirements <their doctor put them on a strict diet>. ant lenient

Stringent suggests restrictions or limitations that curb a course <the judge’s ruling is a stringent interpretation of the law>.

<

soft, bland, mild, gentle. lenient, balmy mean devoid of harshness, roughness, and intensity. Soft implies a subduing of all that is intense and forceful until it is agreeably soothing <took a walk in the soft evening air>. ant hard, stern

Bland implies the absence of anything that might disturb, stimulate, or irritate, and may suggest insipidness <spent a week on a bland diet>. ant pungent, piquant, savory, tasty

Mild stresses moderation or restraint of force or intensity <mild weather> and is often applied to what induces a feeling of quiet beauty or serenity <spoke to the patient in a mild tone>. ant fierce, harsh

Gentle applies to things that are pleasant and agreeable rather than harsh, rough, fierce, strong, or irritating, and that produce a sense of placidity or tranquility or restrained power <a gentle rain>. ant rough, harsh

Lenient stresses a relaxing, softening, or calming influence <the lenient effect of lanolin>. ant caustic.

Balmy suggests refreshment and sometimes exhilaration frequently coupled with the suggestion of fragrance <an unusually balmy day in early spring>.

caustic, mordant, acrid, scathing means stingingly incisive.

Caustic suggests a biting wit <caustic comments about her singing ability>. ant genial Mordant suggests a wit that is played with deadly effectiveness <mordant reviews put the play out of its misery>.

Acrid implies bitterness and often malevolence <a speech marked by acrid invective>. ant benign, kindly

Scathing implies indigent attacks delivered with fierce or withering severity. <a scathing satire of corporate life>.

bent is nearly equal to aptitude, but stresses inclination perhaps more than the ability <a family that has always had an artistic bent>.

aptitude implies the innate capacity as well as natural liking for some activity <a boy with a definite mechanical aptitude>.

grave see SERIOUS

rip see TEAR

spirit 1. see COURAGE

2. see SOUL

split see TEAR

spoil 1. see DECAY

2. see INDULGE

springy see ELASTIC

spry see AGILE

stable see LASTING

start see BEGIN

stay, remain, wait, abide, tarry, linger mean to continue to be in one place for a noticeable time. Stay stresses continuance in a place or sometimes a situation and make note of the status of a visitor <stayed in the same job for over forty years>.

Remain often used interchangeable with stay but distinctively mean to stay behind or to be left after others have gone <only one remained in the building after the alarm was given>. ant depart

Wait implies a staying in expectation or in readiness <wait for the answer to a letter>. Abide implies a prolonged staying or remaining behind and suggests either settled residence or patient waiting for some outcome <a culture whose influence we’ll long abide>. ant depart

Tarry suggests a staying or a failing to proceed when it is time to do so <tarried too long and missed the train>.

Linger 1. close to tarry, may add an implication of deliberate or delaying or unwillingness to depart.

2. see DEFER

3. see RESIDE

stiff, rigid, inflexible, tense, wooden mean difficult to bend or enliven

Stiff may apply to any degree of this condition <muscles will become stiff if they are not stretched>. ant supple, relaxed

Rigid applies to something so stiff that it cannot be bent without breaking <a rigid surfboard>. ant elastic

Inflexible stresses lack of suppleness or pliability <for adequate support, rock climbers use shoes with inflexible soles>. ant flexible

Tense suggests a stretching or straining to a point where elasticity or flexibility is lost <tense nerves>. ant expansive

Wooden suggests a hard inflexibility and dry rigidity of wood and connotes stiffness and lack of life and often clumsy or heavy deadness <moved in a stark wooden manner>.

stifle see SUFFOCATE

suffocate, asphyxiate, stifle, smother, choke, strangle mean to interrupt the normal course of breathing

Suffocate is likely to imply the impossibility of breathing because of the absence of oxygen, the presence of noxious gasses, or interference with the passage of air to and from the lungs <suffocating under the sand which has fallen upon him>. Asphyxiate is likely to refer to situations involving death through lack of oxygen or presence of toxic gas <several people were asphyxiated by chlorine coming from the wrecked train>.

Stifle is to appropriately use to refer to situations where breathing is difficult or impossible because of inadequate fresh air <the room stifling atmosphere>. Smother is usable in situations where the supply of oxygen is or seems inadequate for life and often suggests a deadening pall of smoke, dust, or impurities in the air <smothered by a blanket of volcanic ash>.

Choke suggests positive interference with breathing. For example by compression, obstruction, or severe inflammation of the throat <choke on a bit of apple>. Strangle similar to choke, more consistently applies to serious or fatal interference <strangled to death by an assailant>.

Author’s note:

This is a poetry project where I transcribed a few entries from a 1992 thesaurus and then made an erasure poem of it all. I worked by reading aloud whichever word I just excavated before seeing what following word catches my eye. I decided to bold the words I selected rather than delete the rest of each entry because I wanted readers to be able to see the whole context, and to see how carefully I carved out each word. I plan to continue to dig into this thesaurus and make more erasures when the mood strikes. It’s a wonderful way to access emotion and poetry when I don’t have the spoons to come up with my own words.

Sarena Brown (they/them) is the founder of frequent crier club, a shape-shifting disabled art-based community space. They are also a sick and Mad multidisciplinary artist who makes art to feel through gender feelings, queer belonging, and disability. In addition to earning their MFA in Poetry from UMass Amherst, Sarena is a Dreamyard and Seventh Wave Narrative Shifts fellow and a Sista Uprising grant recipient. They are likely crying. You can find Sarena’s work in Grist Journal, Night Coffee, on social media (insta & substack @frequentcrierclub) or at crierclub.com.

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

Image description #1: Lateisha’s poem, to be clear wit you, in blue text, which reads:

boundaries

choose lovers worthy of your unearthing sky // forge your heart from honourable harvest // plant gods along your back // listen // body got receipts // it is too much // no more work-to-death // rest // when it's time to fight, fight // melt beeswax, set fire to bay // fi dem // unlock somatic gates // call in // run paths of kinship // be ackee & callaloo // be // seek cushions for your table // know you wanted // speak to every spirit that raised you // tell dem // demand your feeling // fortified imagination

and my gods, sing!

Image description #2: Lateisha’s poem definitions of the word REST from cambridge online dictionary

rest verb (STOP)
to (cause someone or something to) stop doing a particular activity or stop being active for a period of time in order to relax and get back your strength
rest verb (STOP)
the other things, people, or parts that remain or that have not been mentioned
rest verb (SUPPORT)
to lie or lean on something, or to put something on something else so that its weight is supported
rest verb (REMAIN)
to remain in a particular state or place
rest verb (STAY)
to be or stay under the control of a particular person or organization
rest noun (OTHER PART)
the other things, people, or parts that are left
rest noun (RELAX)
at rest means not doing anything active or not moving
rest noun (MUSIC)
a mark in written music that shows when and for how long an instrument should not play

Image Description #3: nah, fi wi deserve our own definitions, an erasure poem of the above text with the selected words in bright colours reading:
stop
time get back your

parts

(REMAIN)
in a state place
of
rest


moving

in music

Image description #4: Reregulation
as beautiful as the open sky is
your heart is a safe place
to rest, more
to say fuck you, more
to trust changing winds, more
clouds are not your enemy
breathe them in

align to what needs clearing
yield
give thanks to the offerings of bird song
believe you are space enough for home

Image description #5: The final poem, which reads:
I dedicate these words to comrade and revolutionary mother-guide Claudia Manchanda. A guiding light and deeply missed.
Whose words of wisdom, in one of the most challenging periods of my life through debilitating fatigue, severe anxiety and full body heartbreak (not yet known to me as Long Covid) were some of the most life-affirming and sacred acts of kinship I will ever know.
We must love one another, until we are all free.

Lateisha Davine Lovelace-Hanson (they/she) is an interdisciplinary artist & embodied social justice practitioner of Jamaican heritage. Rooted in Black queer disability justice ecological feminisms, Lateisha’s work meditates on life-sustaining practices.

Instagram: @lateisha_davine

Linktree: Read Lateisha’s latest work here

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

The only time I’ve taken Ativan for something other than insomnia was a Friday evening in the fall of 2013. I was heading to an art gallery in North Beach to read from a work in progress that would eventually grow into my first book, Tender Points. I was going to stand in front of a room of people and say what happened to me, say it into a microphone: that I was raped by my pediatrician, that I repressed the memory, and that the morning after I recalled it as an adult, I woke up with fibromyalgia: chronic pain that never went away.

I was so scared of what I was about to do that I called a cab, an extravagance I rarely allowed myself at the time. The sweet, grainy tablet dissolved under my tongue as we moved through the night, my stapled pages tucked in my bag.

And then I got there, and I did it. I read from the work in progress, and I also read from Maggie Nelson’s Bluets, because the reading was part of Evan Karp and Lapo Guzzini’s Under the Influence series, where every reader shared the writing that influenced their own creation. And it was fine. The audience clapped, and then it was the next person’s turn to read. In fact, it felt good to say it out loud, what happened to me. To put it into words that people could understand. It made me feel less alone, now I wasn’t the only one alone with this memory.

The process of writing Tender Points and the book itself are both defined by their intimacy and vulnerability. I wrote significant portions of the book in bed — door closed, curtains drawn, warm glow from the nightstand lamp — because it was the only place I felt safe enough to let myself think about certain experiences. When I wrote something particularly disturbing, I hit the “return” key until the unsettling language vanished from the screen and I could forget about it until it came time to print out my collection of fragments and collage them into a book.

Tender Points was first published in the summer of 2015 by visionary, now-defunct indie press Timeless, Infinite Light (and later reissued by Nightboat Books in 20191). At the time, I couldn’t have imagined disclosing more about my experience. But looking back, I notice a handful of things are missing from the story.

When I say regret leaving these parts of the story out, I don’t mean that I think the book is deficient without them. Tender Points is a book that recognizes the importance of absences and gaps — you can tell that just by looking at the cover (designed by Timeless, Infinite Light cofounder and generally very talented designer Joel Gregory), which is riddled with holes. The book’s title repeats eight times across the purple background, and each time there’s a hole punched through in place of a letter, so that the words are never intact.

Midway through the book, in describing a year’s worth of disappointing visits to vulvodynia specialists, I consider all the details I can’t remember:

The black holes in my memory become part of the story. I mean, they are the story.

When I talk about regret, what I mean is that I wish I could have felt safe enough, confident enough to say these things in 2015. I’m interested in writing about these lacunae because they give me a chance to reflect on how much I’ve changed and how much the world has changed in the decade since the book was published.

Here’s what I regret leaving out:

1. My queer identity

At the time I was writing Tender Points, I had kissed, dated, and yearned (oh, how I yearned) for women and nonbinary people, but I was hesitant to call myself queer, largely because I hadn’t found a queer community that accepted me.

Because I was bisexual, I was never considered queer enough, not even while I was dating my nonbinary partner, and certainly not after we broke up. As a result, Tender Points is a book about a woman and her boyfriends (the boyfriend who moves to Germany, the depressed noise musician boyfriend, the boyfriend she’s dating as she writes the book).

I was finally snapped out of this internalized biphobia during the Tender Points book tour I did in 2016. I had dinner with writer Tyler Vile after we read together in DC, and when I told her I didn’t call myself queer because I didn’t want to take up space, she corrected me, promised me that the only thing you have to do to be bisexual is be attracted to more than one gender.

That conversation inspired a scene in one of my current projects, Jumpsuits, a road novel about bisexuality, impostor syndrome, making and not making art, and the humiliating experience of becoming yourself. I remember the scene better than what Tyler actually said, so I’m including it here:

“You don’t want to take up space by identifying as queer?” Tor made a face, disgusted, like she’d taken a bite of something rotten. “Margo, that’s so stupid, where did you get that idea?”

Apparently the question was rhetorical, as Tor continued to rant, getting more and more incensed, body tense in her seat, one hand gripping the wheel and the other gesturing like she was giving a speech at a podium. “Take up space! As if there’s some finite amount of space, as if there can only be a certain number of queer people in the world and they all have to be queer in the right way. Jesus Christ!” Now the van was swerving a bit, struggling to stay in its lane. “Sexuality is about desire! If you want to fuck more than one gender, you’re bisexual. It’s not complicated.” Her words washed over me, quenching a very specific and desperate need. Everything I felt about my sexuality, everything I felt about the way Liana dismissed it, here was someone validating all of it, putting my anger into words, smart words that I could carry with me.

Including my bisexuality in Tender Points would have allowed me to write about the intimacy I’ve shared with women and nonbinary partners who had their own experiences with chronic pain and trauma. It also would have let me explore the parallels between bisexuality and invisible illness: the feeling that you’re not queer enough, not disabled enough. In both cases, you find yourself asking, do I belong here? Am I taking up too much space? But at the same time you're not able bodied, and you're not straight. You're not enough in either space. While being able to pass as able-bodied and straight certainly offers specific advantages, it feels weird and alienating to have both my disability and my queerness — two core, defining aspects of my identity — be totally invisible.

2. My other disability

As a woman, a survivor of sexual assault, a person with fibromyalgia, and someone who recalled a repressed memory of trauma, I already had four strikes against my reliability as a narrator. I felt that disclosing my bipolar disorder would take things a step too far, would make me so unreliable and unrelatable that readers wouldn’t believe or connect with my story at all.

Maybe it’s cynical, but I think I may have been right. At least in 2015.

I’m trying to remember if I did any writing about my experiences with bipolar in early drafts of Tender Points or if it was just something I thought about including. I searched my original Google doc for the word and found just one mention, in a quote pulled from a message board conversation where men were complaining about women who “pretend” to have what they called “fake o myalgia”:

Lotta them have depression, anxiety or bipolar disorders too. They have weird “allergies” too, Tylenol, NSAIDs, anti-psychotics... Nut jobs most of em.

In researching my book, I spent time lurking on message boards like this, studying the prevalent hatred and distrust of women with chronic pain. What I learned was that people already thought women with fibromyalgia were “nut jobs” simply because they had fibromyalgia. Even if I didn’t mention bipolar, it was going to be hard enough to get readers to listen and believe me. I was worried that if I revealed that I actually was a nut job, the fact of my mental illness would cast yet another layer of doubt on everything I wrote, a layer thick enough to totally blot out all that was underneath.

(I’m imagining a Goodreads review by a reader who put this imagined version of the book down before finishing it: She thinks her pain is related to being sexually abused in childhood and she says she only remembered the abuse twelve years after it happened? Is that even possible? Whatever, she’s bipolar, who knows. DNF.)

I can’t remember when I first learned about the link between trauma and bipolar disorder — was it while I was writing Tender Points or after? To summarize: it’s very common to have both PTSD and bipolar, PTSD increases your risk of developing bipolar, and oftentimes PTSD is misdiagnosed as bipolar.2 Even before I read these facts, I intuitively understood that my experience of bipolar disorder was linked to the traumatic event. The mood disorder was just another way I was experiencing the trapped memory of the trauma; it wasn’t just haunting my body, it was haunting my mind, too. Of course that belonged in the book, but I wasn’t ready to say it.

It feels important to point out that I started writing Tender Points a few months after finally accessing care for bipolar disorder (after being misdiagnosed and lacking support for many years). The resulting stability is what allowed me to feel safe enough to think and write about my memories of sexual abuse and retraumatizing doctor visits. That’s another reason why it would’ve felt meaningful to acknowledge the fact of my mental health in the book: because finally accessing treatment was the reason I was able to tell the story.

3. The event that made me remember the trauma

Recalling my childhood trauma is the fulcrum of my story, the moment that changed everything: one night, I went to bed an able-bodied person who had a vague sense that nothing especially terrible had ever happened to them, and then I recalled the traumatic memory and woke up with chronic pain that never went away. That’s what made me write Tender Points — the shock of becoming a chronically ill survivor of sexual assault overnight, and the desire to make sense of what happened to me.

I was so focused on the fact of the repressed memory and how it haunted my body that it didn’t think much about how I came to remember it, but that’s a central part of the story too.

Here’s how I imagine it could show up in some other alternate universe version of the book where I’d decided to include it:

∆

The shoulder pain was getting worse, so I visited a doctor a few blocks from my work. She had a sunken, garden-level office on St. Mark’s Place, such a strange place to visit a doctor. You went to St. Marks to get a tattoo, a fake ID, cheap sunglasses, late-night Japanese food, not medical care. Anyway there I was on this street in her basement office and she asked me to raise my arms. When I did, one of my shoulder blades stuck out more than the other one. I saw this in the mirror and I saw her laughing, too: she was standing behind me, laughing out loud at how asymmetrical my body was, at the problem I was trusting her to solve. After laughing at me, she sent me to a little room in back where a man used a massage gun on my muscles. The pain was terrible and I guess I must have been making some kind of noise in response to it because the doctor soon burst into the little back room and shouted at me to be quiet, I was scaring the other patients. I surprised myself by standing up and demanding that she leave the room, that this was my appointment and I was here to be treated for my pain, and she had no business talking to me that way. I paid my copay, thinking, I can’t believe I’m paying for this, and then left the office and started crying. I walked west, thinking I’d get the train home to Brooklyn, the station was only a short walk away, but by the time I reached the end of the block, I realized I couldn’t really handle crossing the street. I had plenty of experience crying but I had never cried like this, totally ensconced in a literal veil of tears that was both physically and psychically impossible to see through. I held out a hand and waited for a cab to find me. While I was waiting, a man gave me his business card: a therapist. I wondered if this was how he found all of his clients.

And it was that night, a few hours later, lying in bed, about to fall asleep, when I remembered something that had happened with a different doctor, when I was a kid, when I hadn’t been able to stand up for myself at all.

I don’t know if it really fits — the perspective I have today on both the childhood trauma and the bad doctor visit is so different from the perspective I had when I wrote the book. I truly feel like a different person now, and I don’t think it’s possible to just slip something into a book I wrote then, or at least not without writing it in the voice of some kind of persona, “2015 Amy.” Or maybe I’m wrong, maybe this would fit in seamlessly and I’m the only one who’d know the difference.

Reflecting on my memory of this unkind basement office doctor, recognizing it as an essential part of the story, I find myself wondering: what if I’d never seen her? What if I’d walked into that appointment and met a competent and caring practitioner who helped me find relief from my shoulder pain? Would I never have remembered the repressed memory? If I’d gone through life without encountering any disrespect from medical professionals (granted, not a likely scenario) maybe the memory would never have surfaced. But this is the moment that brought it to me, and I see it as an important part of the puzzle.

Another Tender Points

I never planned to write another book like Tender Points. Since its publication, I’ve written a book of poems (Gravitas, which came out in 2023) and two novels, one of which is excerpted here. I figured I’d said everything I needed to say about medical sexism and I was happy to be writing mostly fiction.

But then a couple of years ago, someone joked that I was going to have to write another Tender Points. It was my doula, and she was in my kitchen, cooking stew for us a few weeks after our kid was born. She didn’t normally offer postpartum support but she was helping us because my birth had left me more disabled than we’d expected. In addition to a C-section that prevented me from lifting things or sitting up by myself, I’d left the hospital with a nerve injury that made it hard to walk: I couldn’t feel my left ankle or foot, and I couldn’t flex my ankle, so I had to kind of drag my foot when I walked.

The doula told me that she wished she could warn her clients about nerve injuries from epidurals, but it was mostly all anecdotal, just one or two studies, and most of her clients only wanted an epidural in case of emergency anyway.

She told me she’d seen a lot of people get nerve injuries from anesthesia, and every time it happens, the anesthesiologist says the same thing: that it’s impossible.

I think that was the moment she joked that I’d have to write another book about medical sexism; her remark was in response to whatever face I made when she explained how anesthesiologists systemically erase the harm they cause. Of course there was a book there, but I had no desire to write it. I didn’t want to think about how bad my birth experience had been, I wanted to go back to writing the fun, queer road novel I’d started before I had the baby. But I couldn’t do that. I had postpartum depression, but I wouldn’t figure that out until the worst of it was over, at least six months in.

I started a document called Notes Towards Some Thing (unusual spelling of “something” due to dictating into my phone). I wrote about the nerve injury, what the doula said, feeling numb (physically), feeling numb (emotionally), feeling fundamentally changed, how strange pumping was, how alone I felt.

Four months postpartum, I realized the project had a name, and that I did want to write it, even though I resented the responsibility of having to. Monster Truck Rally would be a book about the link between postpartum depression and birth trauma, the surprising name a gesture towards addressing a drastically broader audience than the very limited one targeted by the pastel array of titles on these subjects. Sometimes it does feel like a sibling to Tender Points; my friend Elliott likes to call it 2 Tender 2 Points. The main formal difference is that I’m experimenting with titling each section. But the biggest difference is me: I’m simply a different person than the person who wrote Tender Points. Becoming a parent has made me trust my instincts more than ever before. It’s made me realize I’m nonbinary. It’s made me do almost all my writing by dictating into my phone, a practice I really can’t recommend enough.

From Monster Truck Rally:

Half Bear

My husband is next to me in bed, absorbed in his book, and I’m restless, scrolling. I ask what he’s reading and he tells me it’s a book by a woman who was mauled by a bear. And not only was she mauled by a bear, he adds, she happened to be an anthropologist who was familiar with a belief that if a person is mauled by a bear, they then become half bear.

Mauled by a bear is unarguably an experience remarkable enough to write a book about, which makes me suspect that this experience is not: Unlike being mauled by a bear, birth trauma and postpartum depression are anything but remarkable.

What traumatic birth does have in common with being mauled by a bear is fear, surviving (or not), and medical intervention that may do more harm than good. In this woman’s case, the doctor who treated her in Russia botched her jaw replacement, and the team who corrected it in Paris didn’t sanitize their instruments and gave her an infection.

So if being mauled by a bear leaves you half bear, surviving traumatic birth leaves you what? I attempt an inventory of what I am and it’s inconclusive, just a fuzzy awareness that I’m something different than what I was.

But maybe that’s every birth, you always become something different: You become a parent.

It’s impossible to know what I’ll regret leaving out of Monster Truck Rally ten years from now, because it’s impossible to know who I’ll be ten years from now. And when you think about it, that’s kind of thrilling.

Amy Berkowitz (she / they) is the author of Gravitas (Éditions du Noroît / Total Joy, 2023) and Tender Points (Nightboat Books, 2019). She lives in San Francisco, where she cohosts the Light Jacket Reading Series. They’re currently working on a novel and a nonfiction project.

Follow Amy on Instagram and Bluesky.

How are you?

In the gardens of rest’s enemy where pain is a verb, with slackened pace the snails crept along in search through flooded combinations of frosted glass line displacements and motion ripples. For the body has taken over my consciousness and wealthier stones of private ownership occupy my voice.

A market will say anything now. yes. mass lay downs. yes. extractive abandonment. yes. indigence by a matter of degrees in new and unexpected geometries fuse gluten and constant need for rent somewhere close to the people we love the unpaid work we do the waged labour we apply for. we are beside ourselves. in this paroxysmal hythe of gentrification convenes the bulging assemblies of our algorithms artificial intelligence and the digested trepanation of critical literatures.

On the 24^th of January 1984, Apple launched the Macintosh computer with the slogan "A Computer for the Rest of Us" in the primeval feelings of our most eviscerating technologies we already know the rest. it materialises before our eyes a hatred of real things in small purpose

to put it in our veins we are compelled to smoke it

keep the rest a temporary exfoliation of capitalist demands of endless production.

We look at the walls read in leagues of etymological distance a mile after which to cease stare or stand in what remains is left over leant on the sum remaining to be paid to the corporate vapours by which we subsist for the administration of our scarcity now. decry desist depose to rest and not surrender as with this horrific quantity of coercion and the carapace of the state

in 1991 Ford’s pick-up trucks declare The Best Never Rest advertising later fragments as euphemisms for gun running imperial war the entrenchment of police reality.

How can I say what we are experiencing?

the cold homicidal repulsion of our corporatocratic state

I’m not alluding to sleep though I’m familiar with its prestige honey

hurry up it’s time to suffer

at the conjunction of escapism dreams of detachment a pause of clouds passing through a window

I can’t talk about it as in the residue as in frozen chemicals contrapuntal eternity holds

the rest pours out my body I have to learn to put myself to sleep under the paracetamoon outside the intimate wilderness of my phone.

In 1888 George Eastman coined the advertising slogan "You Press the Button, We Do the Rest". founded The Eastman Kodak Company, patented nitrocellulose film for Kodak to build a photographic school in Rochester, New York to train pilots for aerial reconnaissance during World War I. their feeling of having been refreshed or restored. purchase a hardwood distillation plant in Tennessee to be the Eastman Chemical Company in 1920. paint stripper of thought in the queue of government death machines the varicose train leaves now. when they enter the Second World War Kodak obeys the American War Production Board produces film, cameras, microfilm, pontoons, synthetic fibres, RDX, variable-time fuses, and hand grenades made to feel like baseballs. its European subsidiaries manufacture film, fuses, triggers, detonators, etc through slave labour in Stuttgart and Berlin as Kodak continues to import goods to the United States purchased from Nazi Germany. the names of hypnotic evidence these cities and Fano planes as if the snare might name itself. you press we do the rest. in 1943 Kodak scientists join the Manhattan Project enrich Uranium-235. are later contracted to create emulsions for radiation tests for fallout from nuclear tests and participate in clandestine projects during the Cold War. announce in 2020 the mass production of pharmaceutical materials "You Press the Button, We Do the Rest" these are the cardinal laws of excoriation like the humming drones punched through the flatness of our hard phones around the clock three dots I rest my case in the foment of state profit and surplus extortion

in the gardens of rest’s enemy are the denotation of distance units we cannot get away past the participle of forms that don’t show syncopations of vowels ending the Middle English raising of ĕ to ĭ before a dental consonant in the formal hereafter. I wonder often if we, inside the poem could a) name the rest of it as in the residing moments for upheaval as in the disruption dissent protest and sedition for the sabotage of the borders of our division b) wrest our common and collective survival from racial capital and bio-logics of the state and c) embed in the resonance of the word a material analysis of our material conditions as the surplus class like boiling water across frosted glass a thermal shock to the systems of reproach

in the gardens of rest’s enemy a group of jawless fish breathe like blood soaked bread in the autocue of capital concentration and attestations of the law. since yesterday they have calculated our throats for the absolution of their arms. sales consumed like syntax and clots of water when they say “we” the inhabitants of percentages and average calculations of escalating production our rest lies here we are in pain it destroys private property we cannot trust what we earn they say “we” for a deserving dead the human resource for credit as far as the eye can see in the gardens of rest’s enemy their souls wet themselves with money and we are swirling swirling

sometimes the door is open and I am terrified I am awake betraying the exact coordinates of my harmony with our subterfuge its resistance I’m frightened their enthusiasm for our death is spectacular declarations in the halls of provision and providence the red and murderous blue of the bleached lampreys from on high

rest assured love I know we’ll struggle

from the buttons and slogans of extraction and intent. title. of the dirt we pitch into. name. the horizon we know most familiar with the sun. date of birth. always. gender. oh fuck it. ethnicity. like the mixed spectrum of the sky. first spoken language. they have gouged out our songs. small towns and countries of birth. next time they squeeze. we’ll refuse their deterrent empires in this world we love. address the executioners at dawn whisper no escape lie to the metrics of neoliberal circuitry

I will wrest me here

in the gardens of rest’s enemy

I will lie my way to sleep

With all my heart,

Cat.

12^th December 2024

[Images 1-5 show the original, typed letter, which Cat later transcribed and is reproduced above.]

Cat Chong (they/them) is a poet, essayist, and publisher who, after attaining their BA and MA at Royal Holloway, University of London, completed their PhD in medical humanities at NTU, Singapore as a Nanyang President’s Graduate Scholar, where their work considered the intersections between gender, genre, and disability in contemporary experimental poetics. Their publications include Plain Air: An Apology in Transit (Broken Sleep Books, 2021), dis/content: An Archive of These Dreamings (dis/content, 2021), 712 stanza homes for the sun (Broken Sleep Books, 2023), and Dear Lettera 32 (Permeable Barrier, 2024). Their work has been published and exhibited internationally, appearing in publications such as Bloodaxe Books, Ethos Books, Ache Magazine, Bad Betty Press, Footnote Press, and Singapore Unbound. Their work has also been featured at festivals such as the Ledbury Poetry Festival, Singapore Writer’s Festival, Runnymede International Literary Festival, and Red Bean Poetry Festival. They are a co-founder of the Crested Tit Collective, the digital editor at Osmosis Press, and an assistant editor at Pamenar Press. They also work in London as a cheesemonger.

Instagram: @marbledmayhem

Linktree: Read Cat’s latest work here

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

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Resting Up Collective (RUC) is thrilled to announce our biggest programme to date, in collaboration with Ort Gallery!

Crip Resistance: Holding Space, Building Community is a rich online programme exploring disabled, sick, mad, and crip modes of resistance and remote community care. From February through May 2025, we’ll be hosting artist talks, workshops, film screenings, and live performance events.

The programme will also feature a print and online publication expanding on the programme’s themes, and we have curated a book collection for the Birmingham Resistance Library (BRL).

20% of event and publication proceeds will go to Gaza Sunbirds.

We’re running this programme on Crip Time—meaning events may shift if contributors experience changes in capacity. We honour rest, care, and adaptability.

About the Organisers

Resting Up Collective is an interdisciplinary group of chronically ill and disabled friends practising slowness and Crip Time to create, think, and interrupt neoliberal expectations of productivity. We hold space through workshops and creative experiments for the crip community.

Ort Gallery is a visual arts and poetry organisation in Birmingham, committed to redefining contemporary visual arts. With Warmth as our ethos, we challenge elitism in the art world and centre inclusive, care-focused practices.

Programme Overview

[PAST]

Crip Resistance: Braidings

Thursday 29th May, 19:30 onwards

Book for Crip Resistance: Braidings and find out more

Join Resting Up Collective and Ort Gallery for the final event in the programme Crip Resistance: Holding Space, Building Community for a one-off remote performance of Braidings.

Long-term musical and literary collaborators CN Lester, Miss Jacqui and Jamie Hale come together in an interwoven night of songs and poetry. This richly textured show combines original and unheard music, spoken word, and poetry with covers and reimaginations of work by the disabled, black, queer and trans ancestors who sustain us. Braidings is an evening to uphold and acknowledge, to uplift, inspire, and reclaim our power.

Run time: 1.5 hours approx. with duration of performance roughly around 60 - 80 mins. Please note this may be subject to change.

Content warning: Some of the spoken word and song lyrics refer to adult themes that may be upsetting for viewers. References to death, illness, violence, discrimination, sex and sexual violence.

About the Artists
Jamie - Jamie Hale is an award-winning poet, performer and director whose work explores physical embodiment in nature, fragility, queerness, and mortality. They write “arresting, heart-stopping poems lit with a rare intensity”, and were awarded the Evening Standard Director/Theatremaker of the Year award in 2021 for their first poetry play, NOT DYING. They’ve performed at venues including the Barbican Centre, Tate Modern, Southbank Centre, HOME Manchester, and Theatre Royal Stratford East, and founded the award-winning CRIPtic Arts. They are currently developing a new adaption of Romeo and Juliet and completing their first full poetry collection.

https://jamiehale.co.uk/; https://cripticarts.org/

CN - CN Lester is a singer-songwriter whose music combines piano, voice, and lyrics to form an intimate, arresting whole. They’ve performed extensively throughout the UK, bars, galleries and coffee shops, and at venues including The Arts Club, HOME Manchester, Tate Modern, Barbican, The Royal Exchange, RVT, Dalston Superstore, and Prides from Bath to Brighton, Manchester to Happy Valley. As well as an alternative musician, they are a classical singer and composer and are working on their next album, Fellow Travellers, a novel, and a follow-up to their critically acclaimed book Trans Like Me.

https://www.cnlester.com/

Miss Jacqui - Miss Jacqui is a poet and songwriter who knows a great deal about working with the cards that you are dealt, as a black woman who uses a wheelchair. In her 15+ year career of fusing poetry and spoken word, she has performed at the 2012 Paralympic Welcoming Ceremony and Opening Ceremony, the Southbank Centre, the Barbican and the Roundhouse. Her first EP, Perception, was “soulful and spirited”, a punchy and poignant reclamation of space. She is preparing to release her first album.

https://www.missjacqui.co.uk/

[PAST]

Crip Resistance: Zine Making with Dolly Sen

Thursday 22nd May 2025 | 14:00–16:00

Book tickets to Zine Making with Dolly Sen

Dolly wants you to join them in a zine workshop like no other, where Crip Resistance takes centre stage in all its unruly glory. With their trademark wit, radical tenderness, and punk spirit, Dolly will guide participants through the art of zine-making as a tool of rebellion, survival, defiance, and joy with just one A3 sheet of paper to start off with.

Participants will receive materials via post, but feel free to bring anything you want to subvert to the workshop, such as NHS leaflets, medical notes, etc.

Content Warning: This workshop may include discussions around triggering subjects.

About the Artist
Dolly Sen (she/they) is an internationally renowned writer, filmmaker, artist and activist. She disrupts systems producing oppression, not through trojan horse viruses but with my little ponies on acid with a little sadness in their hearts.

Dolly lives in Norwich with her partner and dog.

www.dollysen.com

[PAST]

Crip Resistance: ‘we have a right to make the universe we dream’ – using disability manifestos as creative tools

Tuesday 13th May | 18–19:30 pm

Book onto the manifesto workshop and read more about it

Join resting up members Char and Jen to write and reflect on disability justice manifestos as tools for organising and creativity. Through a series of short readings and writing/art prompts, this session aims to inspire participants to demand and dream alternative futures through a crip lens.

About the Facilitators
Char Heather is a writer, researcher and workshop facilitator interested in crip narratives and narrative cripping. They are the founder and steward of the remote body, a project that hosts online workshops that centre chronically ill and disabled folk. Their work has been published in The Polyphony, Lassitude, Futch and others.

Jennifer Brough is a queer, disabled slow writer and workshop facilitator based in Nottingham. She writes poetry and short stories exploring the body, pain, and horror using a magical, surrealist lens and has been published in Ache Magazine, Lassitude, SICK Magazine, and others. Jennifer founded resting up collective, an interdisciplinary group of sick creatives offering workshops and projects that centre disability as creative tools.

[SOLD OUT]

Crip Resistance: Writing from Bed, 2nd Iteration

With Olivia Spring
Wednesday 7th May 2025 | 18:00–19:30
More information about Writing from Bed

In response to popular demand we have scheduled a second iteration of this event. Offering places to those on the waitlist first. The spaces are limited due to the logistics of the event in which participants share progress and receive feedback.

Join Olivia Spring for a relaxed writing workshop on themes of resistance through the lens of chronic illness and disability. We will start with a simple exercise, then read and briefly discuss excerpts of text by disabled writers such as Leah Lakshmi Piepzna-Samarasinha, which will lead into further prompts that build off each other.

No writing experience is required, and there is no requirement to share writing during the session. Participants will also come away with writing of their own and a recommended reading list relating to these themes.

About the Artist:
Olivia Spring is the founder and editor of SICK, a magazine exploring chronic illness and disability. Her work has appeared in It’s Nice That, the Guardian, An Encyclopedia of Radical Helping, and rekto:verso, among others. She has been awarded residencies at Monson Arts and Hewnoaks and has hosted talks and workshops for Edmonton Poetry Festival, College of the Atlantic, League of Canadian Poets, Colby College, and more. She lives a slow life in Maine with her dog, Black Bean.
Instagram: @OliviaLSpring / @aSICKmagazine

[PAST]

Crip Resistance: Writing from Bed

With Olivia Spring
Wednesday 30 April 2025 | 18:00–19:30
Book a ticket to Writing from Bed

Join Olivia Spring for a relaxed writing workshop on themes of resistance through the lens of chronic illness and disability. We will start with a simple exercise, then read and briefly discuss excerpts of text by disabled writers such as Leah Lakshmi Piepzna-Samarasinha, which will lead into further prompts that build off each other.

No writing experience is required, and there is no requirement to share writing during the session. Participants will also come away with writing of their own and a recommended reading list relating to these themes.

About the Artist:
Olivia Spring is the founder and editor of SICK, a magazine exploring chronic illness and disability. Her work has appeared in It’s Nice That, the Guardian, An Encyclopedia of Radical Helping, and rekto:verso, among others. She has been awarded residencies at Monson Arts and Hewnoaks and has hosted talks and workshops for Edmonton Poetry Festival, College of the Atlantic, League of Canadian Poets, Colby College, and more. She lives a slow life in Maine with her dog, Black Bean.

Instagram: @OliviaLSpring / @aSICKmagazine

[PAST]

Crip Resistance: Creating Identity Charms

Credit: image courtesy of artist

With Phoebe Kaniewska
Wednesday 16 April 2025 | 18:00–20:00
Find out more about Crip Resistance: Creating Identity Charms

Make charms inspired by your identity using metal foil and ribbon. Artist Phoebe Kaniewska shares the history of charms and her ‘Endometriosis Charms’ work.

In this online workshop, Phoebe will guide you through a short history of the importance of charms, and her own work ‘Endometriosis Charms’, before you can make your own. You will use embossing and engraving techniques to create your own hanging charms or mobiles out of foil metal and ribbon, inspired by your own identity. Materials will be provided and delivered via post.

Content warning: the workshop involves using sharp objects and points, like scissors, maths compasses, participants must feel comfortable using sharp objects for craft purposes independently.

About the Artist

Phoebe Kaniewska (She/Her) is a socially engaged artist, facilitator and curator from South London, who uses her lived experience working in healthcare, chronic illness and disability to shape her artistic practice. She strongly believes in the therapeutic benefit of art, both for the maker and audience.

Instagram: @phoebe_kaniewska

[PAST]

HALO/ECHO: A Walk Without Walking

Credit: image courtesy of artist

Tuesday 8 April 2025 | 16:00–17:00
Find out more about HALO/ECHO: A Walk Without Walking

A guided walk without walking with artist Sop:

‘The world and the living are nothing but a halo, an echo of the relation that binds them together.’ - Emanuele Coccia (The Life of Plants: A Metaphysics of Mixture, 2018)

Prompted by their experience of visiting landscapes in recurring dreams, Sop invites participants on a ‘walk/shop’ – where you don’t have to move, and which you can take part in from your bed, sofa or living room floor.

Using sound, somatic exercises and herbal tools, and prioritising comfort and autonomy, you will be guided into a liminal state in which to take a walk through a landscape from your own memory or dreams.

Reflecting on your experience, you will then be invited to note down features, sensations, emotions and any narrative from your ‘walk’, and share this with your fellow walkers, if desired. In doing so we can attempt to collectivise the individual experiences, travelling together between our dreamed or remembered landscapes.

Instagram: @sop__sop__sop

[PAST]

RUC x BRL Curated Collection Launch + Read and Reflect Circle

Saturday 8 February 2025 | 13:00–17:30
Location: Birmingham Resistance Library
Learn more about RUC x BRL Curated Collection

A curated collection of books on disability, care, and resistance was launched with BRL, followed by a Read and Reflect Circle led by Lucy Lopez and Sahjan Kooner on Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha.

This was the only in-person event.
BSL interpretation provided.

[PAST]

Crip Love, Care & Collaboration in Film

Credit: image courtesy of artist

Thursday 20 February 2025 | 18:00–20:00
Read more about Crip Love, Care & Collaboration in Film

Partners in art and life, Charlie Fitz and Oscar Vinter discussed how their relationship of interdependent care has influenced their collaborative and independent art practice, specifically their filmmaking. This discussion was followed by a screening of several of their short art films. The films explored dancing, masking, ableism, medical bureaucracy, care, the body, identity, hysteria and the occult. The session ended with an informal Q&A discussion.

About the Artists:

Oscar Vinter (he/they) is an afropean neurodivergent artist, composer and filmmaker.

www.oscarvinter.com

Charlie Fitz (she/they) is a sick and disabled artist, arts practitioner, writer and member of Resting Up Collective.

www.CharlieFitzArtist.co.uk

Subscribe and follow @RestingUpCollective_ and @OrtGallery for updates.

With care,
Resting Up Collective

I am Tesha. Chronically ill, daughter of African soil. I can't be Black in peace and I carry the weight of being Black out loud. I am a seeker of rest.

Rest often feels elusive for me. It's a dream that feels just out of reach—a state of being that I long for but struggle to experience. I’m not fighting my brain or the neurological condition that plagues it. I’m fighting against the interconnected systems of racism, capitalism, sexism, and colonialism. These systems deny me the very thing I need most: the ability to rest in peace.

The reality is that rest is not equally accessible to everyone. I, like so many Black people, am constantly on guard, my mind and body forever tethered to a state of vigilance. This vigilance is exhausting. To fight for rest is to fight for the right to simply be without constantly having to explain, justify, or advocate for my worth, my humanity, and my existence. It’s an uphill battle to reclaim my right to peace in a world that constantly demands more, more, and more.

I can recall the moments when I’ve come closest to rest, those fleeting experiences that feel like a reprieve from the weight of the world. It's a Friday evening, I light my candles and the scent of vanilla and coconut incense fills the room. The warm glow of the candles creates an atmosphere of softness, and I find my sweet spot with my vape as the pain slowly subsides. I play my favourite songs, repeating them until I am lulled into a meditative state. No one is watching or listening—except they are, in my mind.

For those few moments, I feel the protection and joy of my ancestors, a flutter in my stomach, a tingle up my spine, a deep inner knowing that comforts me. In this place, I begin to experience peace, if only briefly. My mind quiets. The weight of daily struggles lifts, and I don't feel so heavy.

True relaxation, for me, would mean I wasn’t mentally and emotionally taxed by advocacy work. The organisations that claim to do the work of change would be intentional in how they curate inclusive spaces, respectfully engage with advocates like myself, and compensate us for our contributions. I would wake up without pain, not dreading the inevitable and—oftentimes—debilitating flare-ups, not constantly worrying about whether the government are going to play political ping-pong with the threadbare support they offer and I'd have access to person-centred medical support.

I would wake up without that overwhelming sense of dread and a to-do list looming over me. I must have an A-Z complete plan. What if I refuse treatment? Will my specialist discharge me? What if my plant medicine stops being supportive? Perhaps I need to do some more research. I feel frozen by frustration, exhaustion, loneliness, and invisibility.

I am committed to finding ways to connect with my body through appreciation rather than identifying the areas of pain, stiffness, or weakness. A state of being, free of judgment, free of the need to perform for others, free of constant hustle.

Rest as a State of Being and Mind

When my mind is at rest, it is free of thought. I am present and grounded in the moment. In these moments, I can acknowledge the glimmers that fuel me to keep going.

Rest, for me, is also a state of being where I feel safe enough to dream. To dream of a life where existence doesn’t come with the heavy burden of survival. A gift of mental stillness that makes space for me to imagine what could be, where I shape my vision of peace.

Rest as a mental state is liberating. It offers me the space to reconnect with myself, my community, and my ancestors. It allows me to be, to exist outside of the constraints placed upon me. It shifts my perspective, making it possible to see my challenges not as insurmountable obstacles but as parts of a journey I am equipped to navigate.

Rest and the Collective

This vision of rest cannot be contained in solitude. It needs to be shared, nurtured, and supported. In a world that constantly demands more from Black bodies—emotionally, physically, and mentally—rest must be communal. I long for a space where Black people can come together and experience rest without the burden of judgment, without the weight of white voyeurism. A space where we can embody our ancestral joy and hold one another in solidarity.

In this ideal space, holistic practices are interwoven with African spiritual traditions. A cradle-to-grave space, offering comfort, support, and healing at every stage of life.

In this space rest is not only about relaxation, but about healing and reclaiming what has been lost, offering a sense of power and agency to all who enter.

Rest in this context is transformative. It enables Black people to reconnect with their roots, and to see themselves as part of a larger, resilient community. It allows us to shed the heavy layers of societal expectations and pressures, and experience a profound sense of belonging.

Rest as Freedom

Ultimately, rest is freedom. It is the freedom to simply exist in my Black womanhood on my terms. It is freedom from the need to constantly prove my worth, to explain myself, or to fight for my humanity. Rest is my right to be, to dream, to heal, and to imagine a world where I can be whole.

In my ideal world, rest is not just a privilege for the few, but a right for the many. It is a right that Black people—especially those living with chronic illness—deserve. And in this world, rest is not only the absence of work or worry, but the presence of peace, community, and healing.

Inhale: Rest is not a privilege

Exhale: Rest is a right

Tesha Murrain–Hernandez is a Jamaican–Montserration wellness artist and meditation practitioner, interested in themes of Black community space, herbology, Afro-Spiritualities & Cosmologies, and somatic movement.

Based in Birmingham UK, her background is in teaching, autism awareness training, and managing challenging behaviours in learning spaces. As a Black woman living alongside migraine, Tesha is interested in finding ways to make art more accessible to herself and her wider community, through community gathering, intuitive practices & experimentation, consulting, and collaboration.

Tesha is also a member of the creative support group BRMTWN, and one of the only UK Community Leaders for Shades for Migraine.

Instagram: @the_migraineadvocate
Website: @thesage_grassrootswellness

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

Content warning: the fourth poem, ‘Lockdown Love Song’, makes brief references to COVID and sexual/physical assault.

Crests

All tether and weight I cannot lift 

to sit to reach or 

hold, can’t haul a c r o s s, can’t grip

a       pen

but feel poem graze gullet, struggling 

up – tiny diver 

needing air. I transcribe without 

movement: cursive 

rope of waves backlit in dark. 

Chalked crests 

suspend wanting of salt above freezing 

sand beneath 

east coast flyway; knowing I love but 

not seeing how 

ceilings billow with light and with wing.

~~~

Autumn as a Portal

The reflection sank so deep that I began to wonder if the real world was actually that held beneath the skin of the river. That azure sky, those divining branches, that chalked cloud, honeyed November low sunlight, that occasional fine-lined plane. Viscous and still, could I step from the bank and enter not with human splash but soundless like an otter into element. Looking up to see my face in a different mirror, held by something choral. 

Then I blinked, my vision briefly lifting, surfacing back into the reed-damp air that might be my most treasured thing, my deepest root. Vascular. I am of that lichen scent somehow. And then I saw the kingfisher. Unwavering neon arrow. Low to the water, yes; but above it, unmistakably. 

~~~

Spring blooms beside the telly while I have Covid

Filament burning saffron 
at the heart
of a six-petalled lemon 
mint star.
Rhubarb and custard licked
up stems of 
strangely yolk-blooded egg. 

Gut-pinned in space I’m certain 
if I peel
membrane from my eyes, form 
will enter 
and depose scrabbled words for 
sufficiency - 
this single every thing 

wobbling.

~~~

Lockdown Love Song: Attempt Twenty-Four

You hauling me / into sky safety / crossing the bridge / graphs climbing redly / your smile dazed in the picture / my shield / fearful broccoli / police tape / no sitting / tears / on a curb / rainbow skirt / your face in a mask / still flinching my gut / buying us Magnums / room in pink sky / panorama / prison view / painted hearts / curling foetal / rooftop cacophony / muting corvid anxiety / disdain for post-viral / pulsing / in gaslight / sycamore sanctuary / and chips / and black coffee / sweet / like a grown-up / like you / gripping my wrists / when the bottom falls out / and I go with the herons / men without tops / slop drink on the High Street / others not breathing / screaming / steel ivy / contaging through Abbeville / you spinning their jasmine / teaching me ena to theka / forty / that blizzard / you / kicking the snowman / his dick out / his head off / at the candlelit bandstand / where they’re taking us raping us choking us burning us / mangling omicron / while I plane edges from gamma / so I can start saying love / then the moment

when birds turn 
from feather-clad bones 
into pulses of heat 
that leave fear melted 
in places, windows briefly 

open to rivers and seas
that hold us and show purple

neon split fish in teal 
water that I expect to edge 
my tongue with mint but it buoys 
with salt; those fish 

untroubled by our shadow shapes 
made calm by snorkelled breaths, 

and all the while we were not 
here, restrained from any place 

beyond the sky, 
learning to commune 

in a realm neither water nor viscera 
but punctured by heartbeats by

heartbeats by
heartbeats by
heartbeats by 
heartbeats by
heart                         beats
nonetheless.

Anna Ruddock is curious about bodyminds. She is currently based in Cambridge, working independently as Equitable Health Futures. Anna was a founding member of Chronic Illness Inclusion and continues to collaborate on projects promoting health justice for people living with energy-limiting conditions (ELC). Her poetry has also appeared in Ink Sweat and Tears. 

Contact: anna.ruddock[at]gmail.com

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

Based in thinking around the ‘Repetition of Rest’ with DIY surrealist methods, Nicolette’s twisting, turning poem lives in the liminal space between sleep and consciousness. They explore rest and inertia, fleeting thoughts and solid earth, and how the body transforms in/between these states.

Rest Pieces

gasp pause gasp move
still stillness, in and out of being

1

I rest, sluggishly, shell spiraling round into myself.
I rest, dreamily, whilst dreams are too vivid to comprehend.
I rest, but it is not rest at all.

2

rest as a standstill.
rest as being the rest.
rest as existing defiantly.

defiance with lack.
defiance with inertia.
defiance with energetic intensity.
living with toes tread in duality.
soothe these wounds in silence.

transformed, we live in multiple worlds.
transformed, both of the living and the dead.
transformed, an unmovable verb, transforming.

sometimes, it is like breathing underwater.
sometimes, it is.
sometimes, it is like shuffling into mud.
sometimes, it is.

I become creature-like, as I always was.

3

hibernating in eternal time.
when will the seasons change?
I move like change itself,
shapeshifting as turning sky.

as a twisting emerges,
I curl into myself.

Gastropod, both on land and slick like water.
stomach-churning bewilderment at this smallness.
With each day, a new part of the body speaks.

on the edge of catatonic empty space
aware and unaware
it looks like stillness
and it is chaos

4

touched by weather,
effects in the body
uncertain as peering through fog

rest by being swallowed whole
swirled amongst a bed of unrest

rest by the unnamable 
speaking all day long

tiresome is the task
sludged in dream

dreaming awake

am I missing out on reality?

the drudge of being asleep

wakes up parts of the self

that haven’t been conscious

for a time innumerable

counting like a clock

time ticks with the sheep

and yet I am always sleeping,

and always awake.

nicolette clara iles (they/them) - is a british/jamaican disabled visual artist and writer, using the mediums of poetry & photography with an exploration of themes of interconnectedness, generational lineages & altered surrealist neurological states. 

You can find more of nicolette’s work on Instagram.

This post is part of the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

Rest never formed a large part of my life plan, but now it is the glue that holds my life together. Safety and comfort, invitation and joy — these form the departure point of my art practice.  

Bed Folly for the Chronic Subject is a reimagined ‘frame’ for an artwork, a structure integrating a space to lie down below, with a canvas stretched above, painted as a dreamscape of reclining friends. It offers a radical invitation for the chronic subject to fully participate in the exhibition experience whilst relieving symptoms of discomfort or pain. I like to feel like resting is a treat if I can. My work, and this piece particularly, asks how can we make the clinical acts of pain relief joyful?

The installation enables a prolonged relationship with the painting. The viewer is made entirely comfortable, invited into a more intimate encounter with the subjects in the painting above them. There is only really space for one person to experience the painting at any one time. You are in solitude and yet you are on show, you become part of the installation.  

The figures in the painting recline and float in nudity in a triangular form, touching lightly. They are hidden from view until you lie with and beneath them. Nudity has many second-order meanings: sexuality, vulnerability, freedom. Without clothing, the naked body has no signifier of time, period, or context. They float, and through your comfort, you float with them.  

In The Reclining Nude, Emma Wilson writes: "The reclining nude is an image of passivity, of submission, of hedonism. It allows thought about passivity as pleasure, about depression and grief figured posturally, about indolence as a form of resistance and anarchy."  

Passivity is defined as ‘acceptance of what happens, without active response or resistance’. 

The structure opens up conversations about rest, care, pain, fatigue, passivity, resistance, sexuality and vulnerability.  

The bed folly is the length of my body, 160cm. It is made from up-cycled timber, with space for dirty-shoed feet to poke out the bottom and sides, then uprights into an upper frame with the canvas stretched and inset facing the body. The height of the bed folly is set to give the passerby a glimpse of the artwork ceiling, but they must lie down to see it fully. They must adjust their body to participate. The piece acts as an interruption in art spaces, bringing rest and time to the forefront. 

Nadia Lesniarek is a disabled artist and curator, and my practice revolves around painting, installation, research, and community engagement. Her work focuses on architecture in relation to the body, the senses, joy and radical invitations to the chronic subject.

Nadia Lesniarek’s Bed Folly is the first reflection in the Substack series, ‘On Rest’. Each of the disabled and chronically ill creatives featured receives a remuneration of £50 (made possible by an Edge Fund grant).

If you would like to share your reflections On Rest, please get in touch! If you are financially able, please consider a paid subscription to resting up collective’s Substack to support our work. As ever, thank you for being part of our slow space.

[Image description: A cartoon of a Black woman in an orange jumpsuit in a wheelchair holding hands with a Palestinian woman in a pale jilbāb. There are two grey walls, one has a window showing flames. The text above and between them reads: disability justice means resisting together from solitary cells to open-air prisons. To exist is to resist.]

With Palestine, Sudan, DR Congo, Yemen, and other global conflicts held in our minds, we’re standing with disabled comrades across the world who are compiling resources and guides to protesting while disabled. While crips can’t always make it to the streets, sharing and engaging online is just one way to engage from your resting place. You can also follow Disabled People for a Free Palestine on Instagram and check out their list of resources, which includes actions to take from home. 

UK disability charity Scope found disabled households, on average, need at least £975 a month to have the same quality of living as non-disabled households, with that figure rising under current inflation to £1,122. We raise this because we know disabled comrades can’t always make financial contributions, but reading, learning, and having conversations, are all active forms of solidarity. 

As the below resources state, disability justice and global liberation have always been inherently linked. Here are some (mostly crip) resources we’ve read recently:

— Palestine is Disabled by Leah Lakshmi Piepzna-Samaransinha (text) and video made by @streetsoundsystem.

• “In the spirit of many disability justice crowdfunds, like Stacey Park Milbern’s collective fundraiser to buy the Disability Justice Culture Club in 2019, we are organizing this disabled (and ally) crowdfund to buy a shit ton of eSims.” — Crips for eSims for Gaza and a donation link here.

• We’d also encourage you to sign the open letter to the international disability rights community as an expression of solidarity. 

• The Revolution Will be From Bed — A great graphic from @cripthegig, who has also compiled a Linktree on solidarity actions, including free Palestinian films, petitions for a ceasefire for people in the US/UK/and internationally, and information about BDS. (We also have some overlapping Practical Tips for Disabled Protestors with a lot of communal knowledge in the comments.)

• “Of the thousands wounded from this current assault, many will be permanently disabled in a place where the basic necessities of daily life are stopped at the border, and basic medicine – much less adequate medical care, physical therapy, and adaptive technology – is beyond reach.” — A 2014 statement from SINS Invalid.

• “Disability is spatially concentrated in the refugee camps and in Gaza because of the violence of the occupation, and there is a “layering” of disablement, especially in Gaza, as the numbers of disabled people increase with every act of warfare on an already overburdened infrastructure.” — A 2021 statement from Abolition and Disability Justice.

• “The poem not only operates to embody public revelation, it can reorient us towards the reality of this moment, fizzing our consciousnesses into what we have been refusing to see.” — Allowing Our Hearts To Break: Poetry, Our Embodied Method of Resistance by Sanah Ahsan

resting up reads

The second part of this newsletter is a general update. Working at our custom gentle pace, resting up has a few exciting projects in the works and we’re busy organising from our resting places. We’ve recently launched 2024’s Postcards from Flaresville. Sign up for the project and join our slow mail chain of care!

[Image description: a white double bed with the duvet crumpled in the right-hand corner on a blue sky background. The RUC pillow logo is overlaid over two pillows. Below, read is capitalised in red. Beneath that is a pale green outline of an open book.]

Outside of taking action from home, we’re reading. Living at the whims of our bodyminds makes doing any one thing consistently a challenge. While our to-be-read stack continually increases, we relish books that find us at the right moment. Between updates and opportunities to get involved, we’ll be sending snippets of resting up collective reads. These short reviews are from our reading pile of works that explore issues central to disability, crip time, and the body – often with accompanying intersectional perspectives. 

Our first two books for resting up collective reads are Through an Addict’s Looking-Glass by Waithera Sebatindira and Lean on Me: A Politics of Radical Care by Lynne Segal. With thanks to Hajar Press and Verso for sending us review copies. 

Through an Addict’s Looking-Glass by Waithera Sebatindira

Sebatindira’s thinking-out-loud fragments ask what it means to live in a disabled body under capitalism. They use addiction as an embodied standpoint to reconceive crip time, or ‘it’s-not-time’, to show the slipperiness of memory and recovery, but also to challenge and expand leftist thinking from a collective addict epistemology. 

Deeply personal and generous in its offerings, Through an Addict’s Looking-Glass is honest about the struggle of sobriety. It portrays recovery as a return, the ebb and flow of the tide, and a distinctly non-linear experience. The text highlights a welcome shift in seeing addicts as patients, deserving of holistic healthcare. Sebatindira highlights the failures of the medical model of healthcare, drawing lines of solidarity between its treatment of women, refugees, and asylum seekers, with the latter two groups being ‘more likely to be portrayed as drains on the healthcare system than as patients and who face the risk of meeting a border instead of a carer when they seek medical attention’. There’s much we could say about the expansive thinking behind this title, but we’ll leave you with this quote:

(Hajar Press is an independent political publishing house run by and for people of colour. You can support them by visiting their website and browsing their transformative titles.)

Lean on Me: A Politics of Radical Care by Lynne Segal

In this hybrid memoir and political commentary, Australian feminist thinker Lynne Segal reflects on major social issues facing her audience today, including women’s rights, disability, ageing, and climate change. The throughline in each section makes a convincing case for upending care structures as we know them, in favour of interdependent webs of dependency.

Segal touches upon Western society’s treatment of the chronically ill, disabled, and elderly, particularly in the wake of Covid-19, which underpins a lot of the early commentary. She continues that political movements and interpersonal relationships should be powered by ‘good caring practices’ — which extend beyond our immediate contexts to citizens worldwide. 

Her memories of communal living whilst raising a child and the realities facing certain women in the 1970s are interesting to read. While these reflections are interspersed with critique, the analysis can feel light at times — omitting a detailed commentary on Black women’s contributions to and experiences of feminist praxis. The analysis does acknowledge more intersectional thinkers as the book continues, albeit not consistently. Lean on Me is a scattered read, with the last two chapters (Repairing the Planet and Caring Futures) offering more useful food for thought. 

UK followers — we have a free copy of Lean on Me. First come, first served! Just drop us an email at restingupcollective@gmail.com to claim it.

These reviews is part of resting up collective reads, in which we share old and new texts that centre disability, crip time, and the body. If there’s a crip text you’d recommend, comment below or message us on Instagram. 

resting up collective here. It’s been a while since we last checked in, so this post is a little update to let you know what we’ve been doing. 

It’s also a reminder to ourselves that when we feel like we’re not ‘doing enough’, reflecting and resting remains an integral part of our praxis. After a busy period of delivering workshops and planning new projects, we’re on a small hiatus until next year. Practising what we preach, and all that.

Once back, we hope to run some more online workshops on centring rest within creative practice, start an informal reading group online, and start another round of our mail-based care chain, Postcards from Flaresville.

Until then, we’re kicking back in bed to unwind with some crip creations. From time to time, we’ll send you short reviews from our reading pile of things we’ve enjoyed that focus on disability, crip time, and the body, called resting up collective reads. 

Keep your eyes peeled for our first micro review, coming soon and, if there’s a crip text/artwork/film you’d recommend, comment below or message us on Instagram! 

The Year (So Far) In Brief

This year, we’ve run a mix of online and in-person workshops with Eastside Projects, Glasgow Zine Library, and Nottingham Contemporary, including a session inspired by Abbas Zahedi’s Holding a Heart in Artifice. 

We also spoke to LeftLion, a local arts magazine in Nottingham, about the collective. Later this autumn, we’ll be chatting with artist Gaia Redgrave on her upcoming podcast Rewilding the Artist: Breaking New Ground.

The first iteration of Postcards from Flaresville continues to snail-mail among 30 people across four countries. This slow form of care and connection reminds us that, despite the isolating nature of disability/chronic illness flares, we’re not as alone as think. 

Things We’ve Been Inspired By

• Carolyn Lazard’s Long Take, the artist’s first UK solo exhibition, which four of us saw together at Nottingham Contemporary. Their ‘newly conceived installation responds to the legacy of dance for the camera, considered through the lens of accessibility as a creative tool.’ It was as awesome as you’d imagine. 

  You can read Jen’s review here, which was listed in V.71 of Crip News – a US-based disability news source that just reached its 100th issue! Congrats, Kevin 🙂

• Crip Authorship: Disability as Method, edited by Mara Mills and Rebecca Sanchez. The text is expansive in its crip approaches to writing, research, and publishing.
  It has chapters by some of our favourite authors and activists and is available to read online.

• Sorry for any inconvenience caused. Warmest, Jamila (2023) by Jamila Prowse. In this performance piece, the artist shares her real-life emails cancelling or postponing work.
  
  It’s a moving watch, performed from Prowse’s sick bed, that echoes experiences many of us have felt guilt or shame around. 

• Sick Artists Club. To honour the late Margate-based artist and disability activist Lizzy Rose, this project invited artists with chronic illness or disability to contribute to an online exhibition.

  
  During her time in hospital, Lizzy was frustrated about being unable to do creative work due to illness. In response, she created Hospital Watercolour Club. Sick Artists Club is a testament to finding community while creating alongside others.    

There’s a lot more we could include, but we’ll sign off with this small snapshot for now.

In solidarity from our sick beds to yours,

resting up collective xx

Char, Charlie, Dolly, Ellie, Jane, Jen, Lucia, Olivia, Po, Pema, Sop

Khairani Barokka (Okka) is a writer, poet and artist in London, and Editor of Modern Poetry in Translation. Published widely, her collection Ultimatum Orangutan (Nine Arches Press) was shortlisted for the 2022 Barbellion Prize.

After a warm welcome and one-word check-in, Okka led the chronic illness/disability friendly workshop for just over one hour. Okka guided participants through exercises and discussion that considered how we can write restoratively about the environment. Okka drew on disability/chronically ill positionality and examined how colonial history and geographical positioning in the Global South influence our relationship with/to the natural world. The workshop considered a range of perspectives on how certain marginalised groups can restoratively interact with the earth.

The workshop was supported by Healing Justice London, a project that centres on communities that have been marginalised, to shift states of trauma and ill-health produced by oppression and to support transformative futures for people of colour.

To catch up with the workshop, click below to view the video:

One of the participants, Romany Stott, crafted and shared this poem in the workshop:

If you are inspired and create work in response to the workshop, get in touch! We’d love to read your imaginings based on Okka’s thought-provoking exercises and questions.

resting up collective is currently running, as ever, on crip time. In this slowness, we are conceiving new communal projects to share with you. Follow our Instagram page for updates and, if you’d like to get in touch, feel free to! We love collaborating with our online sick friends and creating new connections against the capitalist clock.

Until next time, rest where you can.

In solidarity,
resting up collective

It’s summertime, the world is melting, resting up collective is on vacation - and you’re invited!

Our destination is Flaresville, a happening beach resort with all the painkillers you desire in the brightest of colours, mobility aids at every turn, heat pads and ice packs, wheelchair friendly paths to the seafront, and, best of all, no one to ask if you’ve tried yoga yet.

Flaresville is a resort that welcomes all folks who are too tired to paste a smiling face onto pain, those in search of a new sick pal to say I hear you, that sucks, and people who want a slice of sunshine in the mail.

The first 30 guests have already checked in and have started sharing experiences of pain flares, dreams, and thoughts through a mail-based chain of care. Once this slow-burn summer project draws to a close, resting up plans to invite more holidaymakers to Flaresville - maybe a winter ski chalet? - and expand our ways of caring with/for each other through slowness and interconnectivity. Stay tuned for future updates via our Instagram - we’ve reserved you a sunlounger.

But, for now, grab yourself a cool beverage and scroll down to reminisce about that resort we all know and just can’t quit coming back to.

Until next time, pals, stay cool. We wish you were here.

In solidarity,
resting up collective

Last week, I woke up with a migraine, emailed my therapist to rearrange in urgent tones, ordered my partner to get a gel eye mask I had kept in the fridge, took painkillers, and then slept until 6pm. I don’t recall any of this, other than the brief feeling of cool gel on my eyelids as I fell back into unconsciousness.

Waking up from a migraine like this, the intense pain at the front half of my head has usually dulled, as though it has gone to have its own nap somewhere in the back of my mind, where it lurks heavily for the few hours that are left of the day. The state that I am in at this point is not an entirely unpleasant experience in itself. It is essentially like I am really high. I am very slow, my speech is slurred, and my eyes are half-closed little moons. Emotionally, I am mostly happy not to be in intense pain anymore and pleased that I’m awake. I am too out of it to experience any emotion intensely, and everything is a bit softer, which is something of a relief. I mean, I am really out of it; not capable of holding a conversation or carrying out mundane tasks. Totally out of it, but perfectly content. 

I was in this state last week after my migraine, and I made a lot of art that depicts the various stages of my typical and atypical ‘migraines’ with eerie accuracy. Eerie, because I can hardly remember creating them.

There are extreme swirls of colours that I sometimes see - they can be based on the colours around me but more often than not, I later look at the natural scene only to find that the colours I saw aren’t to be found anywhere. The doctors have assigned these visuals a descriptor within their own terminology - ‘auras’. But the hallucinations I see are more like the art that I’ve made. That’s why I made it.

I don’t see a transparent glow or a suggestion of colour - I see huge swathes of colours warping and twirling. The colours I see are sometimes not even just colours but opaque materials; usually thick glossy paint. These hallucinations happen much less frequently. They are sometimes preceded by or tend to preclude a sudden and very long surprise sleep. Sometimes they preclude a migraine, typical or otherwise, or a cataplexy attack, or a [question-marked] non-epileptic seizure. Whatever my brain is trying to communicate to me by showing me these incredible scenes of dancing light and organic art, I never feel anxious or frightened when it happens. Rather, I feel privileged to be in the audience. 

Neuro-Pictomancy represents synaesthesia of sorts between the neural networks that make up our body’s intranet and the idea of portrayal (picturing, painting) as a means of communication. It permits the conflation of sensory perception, both optically and in our ‘mind’s eye’, through which we exist, with the idea of a secret or meaningful communication.

Neuro- // of the nerves, nervous system (from modern Latin and modern Greek, 1600s)

Logia // to study

Neurology // the study of our neural networks

-mancer // practitioner of a specific type of divination.

-mancy // The practice of a specific type of divination

divination

1. The act of divining; a foreseeing or foretelling of future events.

2. The apparent art of discovering secrets or the future by preternatural means.

3. An indication of what is future or secret; augury omen; conjectural presage; prediction.

—> Neuromancy - the art of neural divination

pictum (f: picta, m: pictus)

1. decorated, embellished, having been decorated

2. painted, coloured, having been painted

3. portrayed, having been portrayed

—> Pictomancy - the art of divination through colour

Neuro-Pictomancy - the practice of divining communication with our neural networks through the use of colour.

Stillness tanka

after Elizabeth Bishop

The art of stillness
requires great skill to master.
In a game of wills
between you and being still,
who can outlast the other?

Start small. Train your ears
to sense a snowfall of dust,
then twin your heartbeat
with the gentle thickening  
that collects around your feet.

Re-learn time telling
as a plant; bend your head to
a square of light that
arches its back, like a cat
yawning through the passing hours.

Resist that old itch — 
the taut elastic pull of 
what it means to do.
Halt movements at the marrow
breathe between muscular glue.

It becomes reflex
to step inside plush pauses.
Spread out on their bed,
seeking shapes in patterned walls, 
afternoons unwind like thread.

I watch a coffee
uncurl its steaming fingers
and feel my hair grow,
each millimetre a bright
song of noticing tempo.

I’m still practising
the art of stillness, to be
a form in repose.
The bet resets by sunrise,
stillness daring me to go.

It is time to disrupt the notion of time. To seek out the interruption or complete absence of clocks. To reframe the construct of timeframes, deadlines, and the hours of the working day and ask which bodies can maintain this rigour? Who constructs these parameters? Who lives outside of them?

Bodies living with chronic illness and disability are in opposition to neoliberalism’s ableist framework and its centring the cult of the self. In a society that treats life like an enterprise fueled by individualised productivity, we cannot/do not want/should not have to keep up.

As Alison Kafer writes, many of us have no choice but to live under ‘crip time’, which “rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds”. This is something we have to try and learn to live with but, within structures that do not accommodate illness/disability, it’s a continual struggle. In this non-linear world, no day looks the same — we are the embodiment of flexitime. Sometimes we can do all of our daily tasks and have plenty of spoons remaining to pursue joy and creativity outside of necessary commitments. Other days, we only have enough energy to get out of bed, if that.

Crip time means many things. It means, as Ellen Samuels says, that we must “listen to our bodyminds so closely” to avoid pushing beyond our limits while simultaneously recognising them. Crip time means asking why our bodies are viewed as limited, and by whom. It means departing from an idea of linearity and progress, slow or otherwise.
It is not always easy to see this way of being as liberatory. Even under slippery crip time, inequalities persist due to race, gender, class, citizenship, age, and more. Some sick bodies have to work despite being sick because society has never been structured to accommodate black and brown people, let alone sick black and brown people. Resistance to the enforcement of material circumstances, as history has shown us, lives in pockets of care, community-based networks that support each other beyond the confines of the state. The poet Gwendolyn Brooks encapsulated this sentiment in her poem, ‘Paul Robeson’:

“we are each other’s
business:
we are each other’s
magnitude and bond.”

This desire to connect and support each other, be it virtual or IRL, reminds the one voice that it is part of a worldwide chorus of chronically ill and disabled voices. This connectivity reminds us that there is always someone who has time for you, who sees you wholly — with your sickness/disability and couldn’t conceive framing it as a hindrance. These mutual spaces encourage us to hold one another, to support others when they’re running on empty, and organise care in any way we can.

Crip time is an experiment in thinking and being with ourselves and others. A blueprint to try and remake each of our individual worlds. It’s time to start building.

In stillness and solidarity,
resting up collective

And for the record, I am here, taking care of myself. I am unveiling my lonely body and showing myself what I can do for it, and what I cannot. A year has passed and I have gone from brick walls to wood beams, from muddy rivers to blue, silky streams. Beside me now are bent trees waiting patiently for the sun’s warmth and birds digging small openings with their beaks. Here is where I am looking at a slumped and sagging self, and wondering how to hold such a thing.

In this new environment, I worry my body cannot perform the tasks that are a must. I am too used to convenience and urgency and other bodies circling mine. Everything in my old world was vicious, but also easy. It twisted you up with knowing that you would never be alone until you craved solitude so deeply, with both desire and dread. No time to question what I would be if this comfort became a danger; if the familiar became frigid. So I bend my body like the trees, but their arms stretch away as if to detach themselves. The process of resettling is not as simple as breaking yourself in two, or three, or four when your roots are as strong as a mother’s love.

Last week, while bending, I couldn’t reach anything. The floors were not floors. There was no food to insert into myself at the time I was supposed to. Sometimes, all I can allow is liquid, and I become weak. I look at the kitchen with fear — what is hiding in there? Will a mouse poke its head through a sliver of a door? Will it be a chipmunk, a bird, a baby skunk searching for the source of warmth? I have no right to this space — the animals are surrounding my shelter, and they want in. I put my palm to the wall. I am safe here. But I do not trust my own thought. I need to see my body. How big I could become. How violent.

On FaceTime, my mom says, we’re worried you won’t eat when you’re on your own. Finally, at 24, I am alone.And I jump at every sound I hear, every movement a threat. Tense on my sofa and unmoving in bed. I wait for an attack, ready for the natural world to take me and expose my fragility. I could become a forgotten thing so easily. But while I am here —

I train myself: open the drawer, take out a fork. Punch a hole in the plastic wrap, put it in the microwave. Don’t feel guilty for buying ready meals. You are just trying to do the right thing. To care for yourself. 

I train myself: Leave your clothes on the bathroom floor, step into the shower and the warm water will cradle you, not kill you. Stand there in your skin for as long as you can. As long as you want.

I train myself: Let your hands stay with the book you love, steer them away from the small screens that bring you fear. Don’t be scared when you click the yellow lamp and you are in darkness. When you are alone and unprotected.

And for the record, I am here, taking care of myself. I am unveiling my lonely body and showing myself what I can do for it. I have never been isolated like this, with snow thick and heavy for months. There is something I don’t know the name of that I need. Something to let my shoulders slump, to sit with all that is quiet and empty. 

In a particular iteration of the myth — and the one I read (or was read to me) as a child — a fisherman steals a selkie’s seal skin to prevent her from returning to the sea. She marries him and they have children, yet she longs to return to her seal form. One day, she finds the skin and escapes to the sea. Although her family never see her again, a seal will appear near the shore on the children’s birthdays, head bobbing above the waves.

What particularly struck me about the tale as a child was that the selkie continued to yearn for the sea, despite having a husband and children whom she loved. The story provided a different kind of ‘happily ever after’ from the one I was used to in fairy tales, or from the things I was expected to desire from life. It is only as an adult that I can understand the significance of this; as a thirty-something woman aware that my biological clock is ticking, the pressure to start a family is everywhere (targeted pregnancy test ads haunt the corners of my laptop screen). The selkie myth offers an alternative ending, one where I need not be defined by my (in)ability to procreate.

In recent years, my fascination with the story has grown deeper, as the figure of the selkie resonates with my experience of chronic illness. The selkie is never happy in her human form and remains desperate to return to her seal skin. The feeling of being in the ‘wrong’ skin is one I’m acutely familiar with; illness often feels like being a stranger in your own body.

Chronic illness or disease is often described as a foreign intruder, an alien ‘other’ that takes root in the body, a kind of parasite eating the self from inside out. Autoimmune conditions involve a rejection of self; the brain identifies the body as other and attacks it. The sick person may feel trapped in a body that will not bend to the mind’s will, which refuses to conform to normative standards of how bodies should behave.

Although I have tried to assimilate my illness into my sense of identity, this slippage between mind and body is something I feel every day. There are so many things I want to do with my life — I have dreams and desires like everyone else — yet, some days even taking a shower and dressing is enough to send me back to bed. Whilst I struggle to care for myself, having a child does not seem like a tenable option.

This friction of skin, the schism between mind and body is one I attempt to portray in my poem ‘Therianthrope’, which reimagines the selkie myth from the perspective of the selkie herself. In the poem, I explore the contours of the selkie’s body as a way of examining my own experience of illness:

the coming apart

was slippery pink                          thin membrane               of skin spreading                  open-veined               

                                                                        in his bathtub

                             my kneecaps spotted violet                      triangle of my tailbone scraped raw

from the enamel

As in illness, the boundaries of selkie’s body are fluid, mutable, subject to fragmentation. She exists within a perpetual state of becoming — becoming strange, becoming other than herself. 

The poem was shaped in part by Julia Kristeva’s concept of the abject. The abject refers to substances that are expelled by the body, such as blood, faeces, mucus, and urine. Kristeva describes the abject as that which ‘disturbs identity, system, order’ (1982: 4); the abject reveals that the body is a permeable construct, always on the verge of spilling over.

In illness, bodily functions can be harder to control. Abject substances move from interior to exterior, crossing the porous membrane of the body. They are both ‘me’ and ‘not me’; it is not clear where the body begins and ends. In its refusal to ‘respect borders, positions, rules’, the abject draws the subject into a liminal state of being, one where the notion of the self as a discrete entity is dissolved (1982: 4).

Kristeva writes that the abject signifies ‘the in-between, the ambiguous, the composite’ (1982: 4), ‘a fragile state where man strays on the territory of animal’ (1982:12). The abject reminds us of our animalistic origins and the vulnerability of our bodies; it represents the inevitability of death and must be ‘radically excluded’ (1982: 2) in order to protect the integrity of the self. However, if we embrace the ambiguity of this border, perhaps this in-between state can be interpreted as the amorphous body of the human-animal.

The artist Kiki Smith explores this liminal state within her work. In her bronze sculpture Born (2002), a deer gives birth to a woman. Smith aligns the reproductive body with the animal: both expand, swell and change shape during menstruation, pregnancy, and childbirth. My poem ‘Arrival’ was influenced by this sculpture, however, I reconceptualise the birth depicted as an emergence:

waist-deep in old shape. 

the hem pleating around ankles. 

my implements

their sharp edges waxing crescent.

The sick subject experiences a kind of perpetual rebirth in terms of remission and flare, periods of stability followed by instability ad Infinitum. The periods of remission feel like an awakening; a temporary return to the world after a long hibernation. The short, clipped lines and phrases in ‘Arrival’ describe a subject that has been fragmented by the experience of illness. Disjointed and at times mismatched, the lines do not quite meet at the seams, leaving ragged edges, gaps the reader has to stitch together. 

I was diagnosed with an autoimmune condition when I was 13 years old, just as I was entering puberty. My body became a site of extreme change, and it was difficult for me to distinguish between ‘normal’ bodily changes and signs of dysfunction and disease. The symptoms of menstruation were similar to those of illness; bloating, stomach cramps, fatigue. The development of my breasts seemed to me a sign that something terrible was happening within; a creature was growing inside me at an alarming rate.

In my prose poem ‘The Animal At My Chest’ both puberty and disease coalesce in the body of the human-animal. The animal in the story is never identified, however, there are traces of canine, of a wolf-like form that exists at the margins of the text and threatens chaos from within. 

It appears under my arms first. Wet, new born, fawn down. I am pleased. It keeps coming. Darker whorls. Knots on pinewood. The girl asks if she can look. Pushes her breasts against the glass of the shower door. Steam and pink flesh. I know to hide it. I have an idea that something is going wrong. I imagine growing a thick pelt of dark hair. That way no one will know.

I’m interested in the figure of the werewolf as an avatar for the lived experience of chronic illness. In her monthly metamorphosis from human to wolf and back again, the werewolf encapsulates the mutability of both the reproductive and the sick body. The full moon is often associated with menstruation, and illness, too, waxes and wanes, is cyclical in nature.

Kristeva writes that the skin is a ‘fragile container’ (1982: 53); a border between the internal and the external. In the example of the werewolf, this border is completely dissolved during metamorphosis. Described as hairy on the inside, werewolves are said to turn their skin inside out, embodying the abject fear of one’s insides spilling to the outside.

As a hirsute creature, the werewolf can also subvert patriarchal ideals of feminine beauty. In 1654, John Bulwer declared that ‘woman is by nature smooth and delicate; and if she have many hairs she is a monster’ (Priest, 2015: 77). There is still an expectation that women’s bodies should be clean-shaven, pre-pubescent. The sanitised body of the ideal woman not only represents beauty but also control and order. Women are encouraged to use anti-wrinkle cream, wear shapewear pants, pluck their eyebrows, dye their grey roots. The ideal women’s body is frozen in time and bears no trace of the changes that are natural to ageing. 

By drawing on the strange and the fantastic, I attempt to push the limits of reality in order to explore the lived experience of chronic illness. The poems are rooted in my own experiences, however, the body of the human-animal enables me to work through the complexity of my feelings surrounding illness; it gives me the freedom to really dig into some of the knots and sticking points of my past, examine my relationship with my body, and unbraid the entangled threads of puberty and illness.

As well as a means through which to challenge hegemonic ideas about acceptable and unacceptable bodies, the human-animal can also challenge patriarchal ideology and the pressures it places on women to adhere to ideals of femininity and desirability. The anomalous body of the human-animal is a site of resistance; an unruly, vociferous, prickly figure that refuses to conform to social conventions. She is out of control; oozing and seeping in public, a wild-haired woman, grizzled and sagging — and a reminder that all bodies are in motion, implicated in a continual process of deterioration and decay.

Works Cited

Kristeva, Julia, Powers of Horror: An Essay on Abjection (New York: Columbia University Press, 1982) 

Priest, Hannah (ed.), She-Wolf: A Cultural History of Female Werewolves (Manchester University Press, 2015)

Poems

‘Therianthrope’ in amberflora Issue 5, ed. by Katy Lewis Hood & Pratyusha, 2018 

‘The Animal At My Chest’ in Disturbing the Body, ed. by Nici West (Boudicca Press, 2021)

‘Arrival’ in ‘Monsters, Monstrosity and the (In)Humanities’, forthcoming from Exclamat!on Journal Summer 2021

Artwork

Kiki Smith, Born, 2002, bronze sculpture