How to Tell When We Will Die: On Pain, Disability, and Doom By Johanna Hedva

How to Tell When We Will Die is a groundbreaking essay collection by Johanna Hedva, a prominent voice in disability activism. This work challenges our collective understanding of care and illness, asserting that sickness is an inherent part of life. Following the 2014 Ferguson riots and grappling with a chronic illness that kept them housebound, Hedva’s essay “Sick Woman Theory” emerged as a pivotal exploration of illness as a social, not just biological, experience. They argue that under capitalism, which values individuals solely based on their productivity, the act of caring for ourselves and others becomes a revolutionary statement.

In this collection, Hedva expands upon their transformative ideas through a series of incisive essays that traverse a range of topics—from personal narratives to cultural critiques, encompassing figures like Deborah Levy and Susan Sontag, as well as themes of wrestling, kink, mysticism, and death. By introducing archetypes such as The Psychotic Woman, The Freak, and The Hag in Charge, they critique the politics that exploit sickness and perpetuate ableism.

Echoing the insights of Anne Boyer and Leslie Jamison, and infused with humor reminiscent of Samantha Irby, Hedva’s work fundamentally redefines disability. They advocate for a world where care and pain coexist, urging us to view illness as a vibrant, integral aspect of existence rather than an inconvenience. In doing so, Hedva invites us to embrace the full spectrum of the human experience, advocating for a deeper understanding of what it means to be alive.