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 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.
Review Quotes:
\”In these sharp essays, novelist Hedva reflects on living with chronic illness . . .They push back against misogynistic associations between illness and a concept of femininity defined by weakness and fragility, instead asserting that \”you don’t need to be fixed, my queens–it’s the world that needs the fixing.\” Hedva’s philosophical takes on disability are consistently illuminating, even if the subject matter makes for heavy reading . . . Probing and sophisticated, this is worth seeking out.\” –Publishers Weekly
\”This is a book for the moment and for the ages. It’s questing, pissed, propulsive, funny, generous, pervy, and original–full of love and pain in all their entwined glory. Hedva lays waste to solidarity and care as buzzwords and returns them to us enlivened with all the blood and paradox they deserve. I will be thinking in the wake of this important collection for a long time, no doubt alongside so many grateful others.\” –Maggie Nelson, author of The A rgonauts
\”Invites the reader into an ecstatic circle dance in order to generate expansive approaches to talking about disability, illness, care, sex, and community.\” –Lily Kwak, Interview magazine
\”Hedva, a committed reader of queer and female artists, creates, in reaction to their influences, a new construction of themself: a nonbinary and Asian disabled intellectual, as a lens through which to see the world. By centering their experiences into a cohered perspective, they make a contribution on the fronts of fragility and rage, justice and systems, desire and limitation that expands pre-existing frameworks for conceptualizing human experience.\” –Sarah Schulman, author of Let the Record Show: A Political History of ACT UP New York, 1987-1993
\”Johanna Hedva’s new book How To Tell When We Will Die is monstrous good. How did they write the most metal kink crip book about death, survival, crip viscera and reality ever that we need right now? This book is for grown up runaways who stay feral and awake in theafterfuture we inhabit, people who desire and are rare delights, anyone with a body or a mind of any kind, the crips who GET IT and NEED IT and everyone else who does too. It’s exactly what we need right now and goes so beyond the 101 that it blew my brain out of my ears. As we live into the disabled future and claim our crip crone crowns, this book is delicious required reading.\” –Leah Lakshmi Piepzna-Samarasinha, author of The Future Is Disabled
Format: Hardback
Pages: 384
Imprint: Zando
Publication date: 01/01/2025
