Illness & Health

An artist's book disguised as a medical publication written by six fictional women characters from Morocco in free wheeling, Narrative Machines clothes truth with falsehood. With wry irony and Google English it comments on paranoia, fake news, patriarchy, power and media ganging together in the Maghreb (and everywhere else). But it also shows a chosen community of women who confide, support each other and laugh a good load.

Are there weird questions that have been haunting you all your life? Do you wonder why you pass out each mother in law comes to your place? Do you smell fish when you cook meat? Do you know of miraculous medical machines that have been forgotten by official history? What's your take on alternative medicine? Have you ever heard about the Markar, the cardiological device invented by King Hassan II of Morocco? Do you love watching Noujoum Al 3ouloum (Stars of Sciences)? Is your herbalist your best friend? Do you ever wonder if you should wax your arms? In your daily life, do you struggle sometimes with your feminist ethic? Do you put snail cream on your face? Write to us! Join our community! Be part of the Narrative Machines family!

Ghita Skali (born 1992 in Casablanca) is an artist based in Amsterdam. She studied in France, first at Villa Arson, Nice then at the post-graduate program of the Fine Arts School in Lyon. She was a De Ateliers (Amsterdam) resident between 2018 and 2020. She notably exhibited recently at Kunsthal extra City (Antwerp), Palais de Tokyo (Paris) and at the Stedelijk Museum (Amsterdam).

Texts by Kaoutar Chaqchaq, Ayla Mrabet, Ghita Skali
Graphic design: Roxane Maillet

When a mother’s unusual health condition, normal pressure hydrocephalus, renders her entirely dependent on you, your sisters, caregivers, and companions, the unthinkable becomes daily life. In MOTHERCARE, Tillman describes doing what seems impossible: handling her mother as if she were a child and coping with a longtime ambivalence toward her.

In Tillman’s celebrated style and as a “rich noticer of strange things” (Colm Tóibín), she describes, without flinching, the unexpected, heartbreaking, and anxious eleven years of caring for a sick parent.

MOTHERCARE is both a cautionary tale and sympathetic guidance for anyone who suddenly becomes a caregiver. This story may be helpful, informative, consoling, or upsetting, but it never fails to underscore how impossible it is to get the job done completely right.

DWOSKINO. The Gaze of Stephen Dwoskin is the culmination of a three year research project, The Legacies of Stephen Dwoskin, at the University of Reading where his archive is housed. The book is a unique visual distillation of Dwoskin’s life and times, with hundreds of never-seen-before images taken from his archive, and texts by among others Laura Mulvey, Raymond Bellour, Raymond Durgnat, and Dwoskin himself.

Stephen Dwoskin (1939–2012) began his filmmaking career in the New York underground scene of the early 1960s, then moved to London in 1964, where he became a leading figure in avant-garde film, and was one of the founders of the London Filmmakers Co-operative (now LUX). His early works, such as Dyn Amo (1972), are synonymous with the male gaze. Laura Mulvey wrote that he ‘opened a completely new perspective for me on cinematic voyeurism’ and his work was a major influence on her influential work on the male gaze in cinema. From the mid-1970s, he focused his camera upon his own body, afflicted by polio during childhood, in such films as Behindert (1974) and Outside In (1981).

Responses to Derek Jarman's Blue is the third publication in a series of anthologies from Pilot Press seeking contemporary responses to works of art made during the AIDS crisis.

In this third iteration, responses were sought to the 1993 film Blue by the multidisciplinary artist Derek Jarman.

Contributors

In order of appearance

Roelof Bakker
Jared Davis
Becca Albee
Linda Kemp
Ashleigh A. Allen
David Nash
Sam Moore
Anton Stuebner
Gonçalo Lamas
Olivia Laing
Nate Lippens
Jason Lipeles
JP Seabright
Andrew Cummings
Sig Olson
Maria Sledmere
Cleo Henry
Jessie McClaughlin
Lars Meijer
Scott Treleaven
Declan Wiffen
Caitlin Merrett King
Harry Agius
António Manso Preto
Adriana Lazarova
Brooke Palmieri
D Mortimer
Mary Manning
Aaron James Murphy

Printed on 100% recycled paper

Published by Pilot Press, 20 × 15 cm, Softcover, 2022

Today, many feel fettered by insomnia, untouchability, and restrictions on movement. Looking for a more holistic approach to bodily and mental health, this book explores architectures and elementary forms of care and healing in different time periods: from the powers of sleep, touch, and travel in Asklepieia, the ancient healing temples for divine dream encounters alleviating the pain of the ailing pilgrim; to the attentiveness carried through the healing touch from the establishment of Byzantine hospitals till our times; to a pilgrimage center in modern-day Lesbos on a personal search for healing from the traumas of war and patriarchy; to the liberating and self-preserving powers of sleep as a healing response to past and current systems of oppression.

An infectious disease occasionally promotes certain ways of intimacy. For instance, health officials from New York and British Columbia suggested the use of glory holes as part of measures on dating and sex during the coronavirus pandemic to prevent face-to-face contact. Queerness can arise as an unforeseen side effect of the measures against the disease. We can further this by misusing the language of public hygiene as symbols of kink, a face mask as a ball gag, temporary floor marking tapes as bondage tapes, a PCR nose swab as a dilator. Online space, where fake news and memes flourish, is indeed an effective ground for these deliberate misunderstandings to propagate.

2022 February by Noam Youngrak Son
Cathair press (https://www.d-act.org/cathair.html)
@noam_yr

Challenges the ableism of fairy tales and offers new ways to celebrate the magic of all bodies. In fairy tales, happy endings are the norm - as long as you're beautiful and walk on two legs. After all, the ogre never gets the princess. And since fairy tales are the foundational myths of our culture, how can a girl with a disability ever think she'll have a happy ending? By examining the ways that fairy tales have shaped our expectations of disability, Disfigured will point the way toward a new world where disability is no longer a punishment or impediment but operates, instead, as a way of centering a protagonist and helping them to cement their own place in a story, and from there, the world.

Through the book, Leduc ruminates on the connections we make between fairy tale archetypes - the beautiful princess, the glass slipper, the maiden with long hair lost in the tower - and tries to make sense of them through a twenty-first-century disablist lens. From examinations of disability in tales from the Brothers Grimm and Hans Christian Andersen through to modern interpretations ranging from Disney to Angela Carter, and the fight for disabled representation in today's media, Leduc connects the fight for disability justice to the growth of modern, magical stories, and argues for increased awareness and acceptance of that which is other - helping us to see and celebrate the magic inherent in different bodies.

Amanda Leduc's essays and stories have appeared in publications across Canada, the US, and the UK. She is the author of the novels The Miracles of Ordinary Men and the forthcoming The Centaur's Wife . She has cerebral palsy and lives in Hamilton, Ontario, where she works as the Communications Coordinator for the Festival of Literary Diversity (FOLD), Canada's first festival for diverse authors and stories.

A beautifully written, deeply provocative inquiry into the intersection of animal and disability liberation, and the debut of an important new social critic.

How much of what we understand of ourselves as "human" depends on our physical and mental abilities, how we move (or cannot move) in and interact with the world? And how much of our definition of "human" depends on its difference from "animal"?  

Drawing on her own experiences as a disabled person, a disability activist, and an animal advocate, author Sunaura Taylor persuades us to think deeply, and sometimes uncomfortably, about what divides the human from the animal, the disabled from the nondisabled, and what it might mean to break down those divisions, to claim the animal and the vulnerable in ourselves, in a process she calls "cripping animal ethics."  

Beasts of Burden suggests that issues of disability and animal justice—which have heretofore primarily been presented in opposition—are in fact deeply entangled. Fusing philosophy, memoir, science, and the radical truths these disciplines can bring, whether about factory farming, disability oppression, or our assumptions of human superiority over animals, Taylor draws attention to new worlds of experience and empathy that can open up important avenues of solidarity across species and ability. Beasts of Burden is a wonderfully engaging and elegantly written work, both philosophical and personal, by a brilliant new voice. 

At a time when few women could write and most were denied a formal education, Hildegard von Bingen became a legendary healer, visionary, musician, artist, poet, and saint. In Physica, Hildegard presents nine "books" of healing systems: Plants, Elements, Trees, Stones, Fish, Birds, Animals, Reptiles, and Metals. In each book she discusses the qualities of these natural creations and elaborates on their medicinal use, explaining how to prepare and apply different remedies. With its emphasis on balancing the humors, Physica has strong affinity with the Oriental medical approaches gaining great respect today.

The modern reader interested in natural healing will recognize the enormous truth in the theories of this twelth-century physician, many of which prove effective today, serving as a reminder that our cures for illness depend on our natural world and our place in it.

As Hildegard states in Physica, "With earth was the human being created. All the elements served mankind and, sensing that he was alive, they busied themselves in aiding his life in every way."

Translated by Priscilla Throop a Latin and Greek scholar, she holds a master's degree from the Centre for Medieval Studies at the University of Toronto, as well as a Certificate of Advanced Theological Studies from the Episcopal Divinity School in Cambridge. She is a member of the Vermont Classical Language Association and is currently translating Isidore of Seville's Etymologiae. She lives in Charlotte, Vermont.

Guillaume Dustan' first three novels, published in French between 1996 and 1998, describing the narrator's sexual odyssey through a Paris still haunted by AIDS. 

This volume collects a suite of three wildly entertaining and trailblazing short novels by the legendary French anti-assimilationist LGBTQ+ writer Guillaume Dustan. Published sequentially in France between 1996 and 1998, the three novels are exuberant and deliberately affectless accounts of the narrator's sexual odyssey through a Parisian club and bath scene still haunted by AIDS.  

In My Room (1996) takes place almost entirely in the narrator's bedroom. The middle volume, I'm Going Out Tonight (1997) finds him venturing out onto the gay scene in one long night. Finally, in Stronger Than Me(1998) the narrator reflects on his early life, which coincided with the appearance and spread of the AIDS virus in France.  

A close contemporary of Dennis Cooper, Brett Easton Ellis, Kevin Killian, and Gary Indiana, Guillaume Dustan's deadpan autofiction is at once satirical and intimate, and completely contemporary.

Upon becoming a new mother, Eula Biss addresses a chronic condition of fear: fear of the government, the medical establishment, and what is in children's food, mattresses, medicines, and vaccines. Biss investigates the metaphors and myths surrounding the conception of immunity and its implications for the individual and the social body. As she hears more and more fears about vaccines, Biss researches what they mean for her own child, her immediate community, America, and the world.

Lambda Literary Award winning poet and essayist and long-time disability justice advocate Leah Piepzna-Samarasinha writes passionately and personally about disability justice in her latest book of essays. Discussing subjects such as the creation of care webs, collective access, and radically accessible spaces, she also imparts her own survivor skills and wisdom based on her years of activist work, empowering the disabled - in particular, those in queer and/or BIPOC communities - and granting them the necessary tools by which they can imagine a future where no one is left behind.

In this collection of personal essays and poetry, acclaimed poet and performer Pamela Sneed details her coming of age in New York City during the late 1980s. Funeral Diva captures the impact of AIDS on black queer life, and highlights the enduring bonds between the living, the dying, and the dead. Sneed's poems not only converse with lovers past and present, but also with her literary forebears - like James Baldwin, Toni Morrison, Audre Lorde - whose aesthetic and thematic investments she renews for a contemporary American landscape. Offering critical focus on matters from police brutality to LGBTQ+ rights, Funeral Diva confronts the most pressing issues of our time with acerbic wit and audacity.

Poet, professor, and performer, Pamela Sneed is the author of Sweet Dreams, Kong, and Imagine Being More Afraid of Freedom than Slavery. She was a Visiting Critic at Yale, and at Columbia University's School of the Arts, and is online faculty at Chicago's School of the Art Institute teaching Human Rights and Writing Art. She also teaches new genres at Columbia's School of the Arts in the Visual Dept. Her work is widely anthologized and appears in Nikki Giovanni's, The 100 Best African American Poems.

Published October 2020

Funeral Divais the Winner of the Lambda Award for Lesbian Poetry.

Fiercely devoted to the margins of life in the generation after the devastating first wave of the AIDS epidemic, this cathartic collection of poems explores illness, travel, contagion, the meaning of home, identity, tainted purity, and the bits of life that contain them and hold them together in spite of the harsh exigency of daily life. In more than 40 pieces, Chin fearlessly delivers everything from his first exposure to science (Magnified) to a mail order fantasy experience (I Buy Sea Monkeys); from backroads travel in Asia (Little Everest in Your Palm) to the plight of immigrants in America (The Men's Restroom at the INS Building). Chin's brutal honesty and sharp humor frame a profound and original collection.

Justin Chin is the author of two collections of poetry, Harmless Medicine and Bite Hard (Manic D Press), and two collections of essays, Burden of Ashes (Alyson Press) and Mongrel: Essays, Diatribes and Pranks (St. Martin's Press). In the 1990's, as a performance artist, he created several performance works that were presented nationally and abroad.

In just six years, ACT UP, New York, a broad and unlikely coalition of activists from all races, genders, sexualities, and backgrounds, changed the world. Armed with rancor, desperation, intelligence, and creativity, it took on the AIDS crisis with an indefatigable, ingenious, and multifaceted attack on the corporations, institutions, governments, and individuals who stood in the way of AIDS treatment for all. They stormed the FDA and NIH in Washington, DC, and started needle exchange programs in New York; they took over Grand Central Terminal and fought to change the legal definition of AIDS to include women; they transformed the American insurance industry, weaponized art and advertising to push their agenda, and battled, and beat, The New York Times, the Catholic Church, and the pharmaceutical industry. Their activism, in its complex and intersectional power, transformed the lives of people with AIDS and the bigoted society that had abandoned them.  

Based on more than two hundred interviews with ACT UP members and rich with lessons for today's activists, Let the Record Show is a revelatory exploration, and long-overdue reassessment, of the coalition's inner workings, conflicts, achievements, and ultimate fracture. Schulman, one of the most revered queer writers and thinkers of her generation, explores the how and the why, examining, with her characteristic rigor and bite, how a group of desperate outcasts changed America forever, and in the process created a livable future for generations of people across the world.

In the usual order of things, lives run their course and eventually one becomes who one is. Bodily and psychic transformations do nothing but reinforce the permanence of identity. But as a result of serious trauma, or sometimes for no reason at all, a subject's history splits and a new, unprecedented persona comes to live with the former person - an unrecognizable persona whose present comes from no past and whose future harbors nothing to come; an existential improvisation, a form born of the accident and by accident. Out of a deep cut opened in a biography, a new being comes into the world for a second time. 

What is this form? A face? A psychological profile? What ontology can it account for, if ontology has always been attached to the essential, forever blind to the aléa of transformations? What history of being can the plastic power of destruction explain? What can it tell us about the explosive tendency of existence that secretly threatens each one of us? 

Continuing her reflections on destructive plasticity, split identities and the psychic consequences experienced by those who have suffered brain injury or have been traumatized by war and other catastrophes, Catherine Malabou invites us to join her in a philosophic and literary adventure in which Spinoza, Deleuze and Freud cross paths with Proust and Duras.

A curatorial and research project that aims to move beyond insanity as the opposite of sanity, and imagine a space beyond what is understood as sane, i.e. ultrasanity—not a romanticization of madness or mental illness, but an effort to reconsider and challenge the notion of madness and the stigmas labelled on the so-called mad.

This publication unfolds as a collection of words, works, and images that informed, incited, and embodied SAVVY Contemporary's project Ultrasanity. On Madness, Sanitation, Antipsychiatry, and Resistance, an exhibition and research project on the elasticity of sanity. 

It doesn't materialise simply as a catalogue of the exhibition but as a book retracing the trajectory of a research, as an occasion to extend SAVVY's curatorial proposition into a further choral perspective. With it we aim to deepen some of the reflections that moved and agitated us through two years of researches, conversations, programming, and practicing of Ultrasanity. The cogitations and the confrontations, the movements and the sounds, the trials and the tribulations, that accompanied us through the project and its 4 chapters and iterations are here collected to resonate one to each other, and to open new trajectories and paths.

Contributions by Hortensia Völckers, Kirsten Ha, Alya Sebti, Inka Gressel, Joerg Fingerhut, Ana Gómez-Carillo, Bonaventure Soh Bejeng Ndikung, Elena Agudio, Frederick W. Hickling, Debbie-Ann Chambers, Jaswant Guzder, The Brother Moves On, Jota Mombaça, Ghayath Almadhoun, Dora García, Monica Greco, Sajdeep Soomal, Ayesha Hameed, Jaswant Guzder, Johan Lagae, Sofie Boonen, Maarten Liefooghe, Mpho Matsipa, Dorothee Munyaneza.

Award-winning poet Danez Smith is a groundbreaking force, celebrated for deft lyrics, urgent subjects, and performative power. Don’t Call Us Dead opens with a heartrending sequence that imagines an afterlife for black men shot by police, a place where suspicion, violence, and grief are forgotten and replaced with the safety, love, and longevity they deserved here on earth. Smith turns then to desire, mortality—the dangers experienced in skin, body, and blood—and a diagnosis of HIV positive. “some of us are killed / in pieces,” Smith writes, “some of us all at once.” Don’t Call Us Dead is an astonishing collection, one that confronts America where every day is too often a funeral and not often enough a miracle. 

Danez Smith is the author of [insert] boy, winner of the Lambda Literary Award for Gay Poetry and the Kate Tufts Discovery Award. Smith has received fellowships from the McKnight Foundation and the Poetry Foundation, and lives in Minneapolis.

In an era when capitalism leaves so many to suffer and to die, with neoliberal 'self-care' offering little more than a bandaid, how can we take health and care back into our hands? In The Hologram, Cassie Thornton puts forward a bold vision for revolutionary care: a viral, peer-to-peer feminist health network. The premise is simple: three people - a 'triangle' - meet on a regular basis, digitally or in person, to focus on the physical, mental and social health of a fourth - the 'hologram'. The hologram, in turn, teaches their caregivers how to give and also receive care; each member of their triangle becomes a hologram for another, different triangle, and so the system expands. Drawing on radical models developed in the Greek solidarity clinics during a decade of crisis, and directly engaging with discussions around mutual aid and the coronavirus pandemic, The Hologram develops the skills and relationships we desperately need for the anti-capitalist struggles of the present, and the post-capitalist society of the future. One part art, one part activism, one part science fiction, this book offers the reader a guide to establishing a Hologram network as well as reflections on this cooperative work in progress.

Cassie Thornton is an artist and activist from the US, currently living in Canada. She refers to herself as a feminist economist, a title that frames her work as that of a social scientist actively preparing for the economics of a future society that produces health and life without the tools that reproduce oppression, like money, police or prisons. 

Epidemics and pandemics undermine societies and highlight the vulnerability of relations people have created to the land, other species, and each other. This book presents fragments of disease management in the Mediterranean from the 15th-century onwards and in the Aegean Archipelago in the last two centuries. From religious to medical approaches to the Bubonic Plague, through the creation of lazarettos, to the famine in occupied Syros, to ghost ships drifting on the Mediterranean: citizens are forced to avoid citizens. Public health in crisis: confinement versus mobility, awakening memories of totalitarian regimes.

CONTENTS

Impending Arrivals by Dimitra Kondylatou
Cruises to Nowhere
Covid-19 stricken Ships
Ghost Ships drifting on the Mediterranean

Suspended Arrivals by Dimitra Kondylatou
Le Corbusier Confined
Venice, Lazaretto and Black Death

Confined Spaces by Dimitra Kondylatou
Religious versus Medical Approaches to the Plague
Public Health and Public Order
Architectures of Control
The Lazaretto at Syros

Confinement and Totalitarianism, Famine in Occupied Syros
by Nicolas Lakiotakis

Panic Room. Waiting Room. Island.
by Hulya Ertas

Racism and trauma are addressed as the author examines white supremacy in America from the perspective of body-centered psychology.

The body is where our instincts reside and where we fight, flee, or freeze, and it endures the trauma inflicted by the ills that plague society. Menakem argues this destruction will continue until Americans learn to heal the generational anguish of white supremacy, which is deeply embedded in all our bodies. Our collective agony doesn't just affect African Americans. White Americans suffer their own secondary trauma as well. So do blue Americans — our police.

Blending memoir with critique, an award-winning poet and essayist's devastating exploration of sickness and health, cancer and the cancer industry, in the modern world

A week after her 41st birthday, Anne Boyer was diagnosed with highly aggressive triple-negative breast cancer. For a single mother living payslip to payslip, the condition was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.

In The Undying - at once her harrowing memoir of survival, and a 21st-century Illness as Metaphor - Boyer draws on sources from ancient Roman dream diarists to cancer vloggers to explore the experience of illness. She investigates the quackeries, casualties and ecological costs of cancer under capitalism, and dives into the long line of women writing about their own illnesses and deaths, among them Audre Lorde, Kathy Acker and Susan Sontag.

Genre-bending, devastating and profoundly humane, The Undying is an unmissably insightful meditation on cancer, the cancer industry and the sicknesses and glories of contemporary life.

Winner of The Pulitzer Prize for Nonfiction 2020; Windham Campbell Prize for Nonfiction 2020

Excerpts from Caren Beilin’s 2019 essay/memoir about reproductive health and the IUD, gendered illness, medical gaslighting, and activism in the chronic illness community.

“The moon is hollow. The moon is hollow says a certain contingent of people, because of aliens (and, also, the moon has experienced bangs on its surface that have apparently made it ring just like a bell).
These people are conspiracy theorists. Paranoid, conclusive, certain. Too certain. They connect the dots with their eager, enormous chalk. They want something to be true. They want, I think, something new to be true, and they are taken (as I am) with the moon being like a bell, two phonemes, moon, bell, beautiful and struck across each other’s false armor, mutable and beautiful.
The moon is a bell, as the theorist Georges Bataille, in 1931, said, ‘The sun is an anus.’ He was arguing about the beauty – the absolute energy – of the copula.

‘The verb to be is the vehicle of amorous frenzy,’ he wrote, the year that Benjamin unpacked his library, alone. The moon is a bell, and I believe this absolutely, sure. The IUD is the RA. The sexual force of the verb, is, to be, of my verbacious being, will knock any noun into the moon and beyond. Everything is a parody, can be anything. The moon is hollow and made of muleskin. The moon is hollow, insofar as it is coated with the agglutinate, the shining coat, of a limit. I cannot go into the moon with my eyesight. I can’t enter my womb from that time (in November 2015) and sit crosslegged by the device, at the base of its suspending embedding, in the oaty red fist of my uterus, and watch the metal loam off its rigid cross-branch – and leech into tissues and activate, or reanimate, flare, or push over my problem. I can’t spy the center of the inception or the core of my being. I only know the timing. My health deteriorated rapidly after it was in, and I know how horrible it is, to cease planning for trips, outings, applications, or children, waiting and watching for how bad and how soon, and that the moon is hollow

This pamphlet excerpts from Blackfishing the IUD, published in 2019 by Wolfman Books, Oakland. With thanks to Caren Beilin, Jacob Kahn, and Justin Carder.

"The Pain Journal" is the last finished work by Los Angeles writer and artist Bob Flanagan and is the extraordinary chronicle of the final year of his life before his death from cystic fibrosis at the age of 43. Flanagan created performances with Sheree Rose that shocked and inspired audiences as he combined text, video, and live performance to create a highly personal exploration of childhood, sex, illness, and mortality.