The long-awaited essay collection from one of the most influential voices in disability activism that detonates a bomb in our collective understanding of care and illness, showing us that sickness is a fact of life.
In the wake of the 2014 Ferguson riots, and sick with a chronic condition that rendered them housebound, Johanna Hedva turned to the page to ask: How do you throw a brick through the window of a bank if you can't get out of bed? It was not long before this essay, "Sick Woman Theory", became a seminal work on disability, because in reframing illness as not just a biological experience but a social one, Hedva argues that under capitalism--a system that limits our worth to the productivity of our bodies--we must reach for the revolutionary act of caring for ourselves and others.
How to Tell When We Will Die: On Pain, Disability, and Doom (Zando-Hillman Grad Books, 2024) expands upon Hedva's paradigm-shifting perspective in a series of slyly subversive and razor-sharp essays that range from the theoretical to the personal--from Deborah Levy and Susan Sontag to wrestling, kink, mysticism, death, and the color yellow. Drawing from their experiences with America's byzantine healthcare system, and considering archetypes they call The Psychotic Woman, The Freak, and The Hag in Charge, Hedva offers a bracing indictment of the politics that exploit sickness--relying on and fueling ableism--to the detriment of us all.
With the insight of Anne Boyer's The Undying and Leslie Jamison's The Empathy Exams, and the wit of Samantha Irby, Hedva's debut collection upends our collective understanding of disability. In their radical reimagining of a world where care and pain are symbiotic, and our bodies are allowed to live free and well, Hedva implores us to remember that illness is neither an inconvenience or inevitability, but an enlivening and elemental part of being alive.
Johanna Hedva (they/them) is a Korean American writer, artist, and musician from Los Angeles. Hedva is the author of the essay collection How To Tell When We Will Die: On Pain, Disability, and Doom, published September 2024, by Hillman Grad Books. They are also the author of the novels Your Love Is Not Good and On Hell, as well as Minerva the Miscarriage of the Brain, a collection of poems, performances, and essays. Their albums are Black Moon Lilith in Pisces in the 4th House and The Sun and the Moon. Their work has been shown in Berlin at Gropius Bau, Haus der Kulturen der Welt, Klosterruine, and Institute of Cultural Inquiry; in Los Angeles at JOAN, HRLA, in the Getty’s Pacific Standard Time, and the LA Architecture and Design Museum; The Institute of Contemporary Arts in London; Performance Space New York; Buk-Seoul Museum of Art and Gyeongnam Art Museum in South Korea; the 14th Shanghai Biennial; Migros Museum für Gegenwartskunst in Zürich; Modern Art Oxford; Museum of Modern and Contemporary Art of Bolzano; the Museum of Contemporary Art on the Moon; and in the Transmediale, Unsound, Rewire, and Creepy Teepee Festivals. Their writing has appeared in Triple Canopy, frieze, The White Review, Topical Cream, Spike, Die Zeit, and is anthologized in Whitechapel: Documents of Contemporary Art. Their essay “Sick Woman Theory,” published in 2016, has been translated into 11 languages.
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