Against Technoableism: Rethinking Who Needs Improvement

A series of propositions and encounters in service to an aesthetic, critical, and poetic experience of living life led by death.

Part studious, part visceral, Dying Livingly is a collection of short essays written in the first few years of the author's holistic deathcare research and practice. With a focus on the truth of impermanence and the material cultures of death and dying, the writing reaches toward a future of compassionate, community-centered deathcare.

Death has been outsourced, medicalized, and commodified for over a century. Existing at a threshold of innovation and transformation today, death is not a plight to master or transcend but a reality of insistent change requiring our humble surrender. Working in tandem with the possibilities and limits of medicine, the holistic deathcare movement aims to support people and their communities in death literacy and phobia. It stewards both ancient and new practices in deathcare and centers social, political, and ecological imperatives for how we die.

If death is an amplification of living, the attention here is on bearing witness to life in and around the dying and the potential to contribute to a more vibrant culture of care. Living a death-oriented life is not simply for those and their loved ones navigating a terminal diagnosis and finite amount of time to live; it is for all of us. Death awareness leads to a valuing of life, which is urgently needed for justice, healing, and our livability.
With fervor and deep reverence, this collection demonstrates that what is needed above all is a presence—simple but challenging—that refuses to look away as life slips from our grip. In this light, the writing details lessons in what it means to be prepared for death but also impossibly ready. Death is a horizon that inspires us to live fully, with the vulnerability necessary in the transformative process of giving and receiving care.

Staci Bu Shea (born 1988 in Miami) is a curator, writer, and holistic death care worker based in Utrecht, the Netherlands, focusing on aesthetic and poetic practices of social reproduction and care work, as well as its manifestations in interpersonal relationships and daily life, community organizing and institutional practice.

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 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.