Reading Lists

Centering disabled people’s stories is the first step to creating a more caring world

Photo by Tim Mossholder via Unsplash

To be disabled in this rapidly changing world is to understand how deeply interconnected all of our fates are. The Covid-19 pandemic we are still living through showed, for a brief moment, that US society can shift towards mutual aid and care. Unfortunately, that high point of compassion has been followed by state and cultural abandonment of the most vulnerable people in our communities.

It’s been twenty-five years since the passing of the Americans With Disabilities Act in 1990, a landmark bill that helped provide protections and needed benefits for disabled people in the United States. Yet it is difficult to celebrate that legacy in the face of rising eugenics ideology from the state. The Trump administration is actively dismantling public health in ways that harm disabled communities. In this moment, stories by disabled writers and activists are vital to understanding our interconnections and to make space for solidarity. Disabled folks are often the “canaries in the coalmine,” warning the rest of society that ableism and fascism go hand-in-hand when they decide who is the “ideal citizen” deserving of support, resources, and even life. When the US government decides that certain people are a “drain” on society and that, in the words of the leader of the Centers for Medicare and Medicaid Services, Dr. Mehmet Oz, we have a “patriotic duty to be healthy,” will those who aren’t “healthy” simply be discarded or disappeared?

In the face of increased abandonment and oppression, disabled writers, organizers and advocates continue to tell their stories. They are writing about the vast diversity of disabled experiences and advocating for justice that spans the disability community and the whole of society. The writers on this list have become north stars to many disabled folks working in solidarity in their communities. May these books remind us that disability touches all of our lives whether we want to face that fact or not. Centering disabled people’s stories and experiences is the only way towards the collective creation of a more caring world.

*The Future is Disabled: Prophecies, Love Notes, and Mourning Songs*by Leah Lakshmi Piepzna-Samarasinha

In The Future is Disabled, Piepzna-Samarasinha speaks from their experiences as a queer, disabled artist, caregiver, and organizer. Her personal stories, essays, and poetic reflections envision futures in which disabled people not only survive impending disasters and societal abandonment, but thrive in solidarity with one another. Their writing provides a reflective framework on how to create care webs of people whose care and survival is interconnected.

Black Disability Politics by Sami Shalk

In Black Disability Politics, Sami Schalk explores how political engagement with disability has been central to Black activism and organizing from the 1970s to the present day. Shalk includes archival accounts from the Black Panther Party, The National Black Women’s Health Project, and interviews with Black disabled cultural workers to explain the tenets of Black disability politics in a white supremacist society. From how Black activists have pushed for public health initiatives that center marginalized disabled people to how their work shapes current understanding of liberation, Shalk’s scholarly and deeply personal writing is essential.

*Against Technoableism: Rethinking Who Needs Improvement*by Ashley Shew

Bioethicist and professor Ashely Shew uses her own experience as an amputee with chronic illnesses to relate with other disabled people attempting to navigate social spaces in a society that views disability as a “problem” to fix rather than a state of being anyone can encounter. Shew argues against “technoableism,” or the ways in which technology is used as a “solution” to disability. Instead, she shares insight from her life, research, and the experiences of others across the disability spectrum as to how we can create futures that are more accessible and equitable for everyone. When we actually listen to and trust disabled people’s lived experiences, a more accessible world is possible.

Disability Intimacy: Essays on Love, Care and Desire edited by Alice Wong

This is the second anthology edited by Alice Wong, writer and the creator of the Disability Visibility storytelling project. This collection of stories, photoessays, poems and other work by well known disabled writers and newer voices is organized into four parts: Love and Care, Pleasure and Desire, Creativity and Power, and Everything and Everywhere.The stories speak to the intimacy of being vulnerable with someone else who provides home health care, building loving relationships between two queer disabled lovers, and finding pleasure through nude self-photography as Sami Shalk describes in “Pleasure is the Point.” At its core, this book is gathering testimonies of how disabled people share love, care, and intimacy in a world that undervalues this kind of vulnerability.

*If I Were You, I’d Kill Myself*by Imani Barbarin

Imani Barbarin, or @crutchesandspice as she is known across her social media, is a writer, creator, and disability rights activist who has gained a following for biting political commentary and speaking about the experiences of living in the United States as a Black woman with cerebral palsy. Barbarin uses humor to help her audience develop media literacy and understand the way ableism intersects with every issue communities face in the US. *If I Were You I’d Kill Myself,*her debut memoir, recounts the experience of growing up with cerebral palsy and hearing all kinds of platitudes about how “inspiring” and “brave” she was just for existing. She also writes about contemporary political and cultural issues through a queer disabled lens with her unabashed candor and wit.

There Plant Eyes: A Personal and Cultural History of Blindness by M. Leona Godin

Godin began losing her vision when she was ten. This book, a historical and scientific examination of seeing illustrates how stories we tell about blindness and sight have shaped our culture. Godin speaks about her own experiences and analyzes the way blindness has been represented in myths, art, and media as both a lack of consciousness and a special power that makes blind characters otherworldly. She also includes accounts of how science and technology have shaped how blind people navigate the world, speaking of her own experiences with changing vision and adaptive technologies. As with other books on this list, Godin perfectly blends the personal and cultural, affirming that for disabled writers, the two are inextricable.

*Health Communism*by Beatrice Adler Bolton and Artie Vierkant

Creators of the incredibly important Death Panel Podcast, the authors provide an in-depth analysis of the deeply harmful and unsustainable ways that society treats disabled, mad, and vulnerable people. Language like “surplus” and “burden” reveal how capitalism informs a “healthcare” system that the state is incentivized to control through extractive private health insurance and carceral mental hospitals. Adler Bolton and Vierkant argue that leftist politics and solidarity organizing must center on disability justice and universal access to healthcare in order to create a more just, caring society that is free from the violence of capitalist exploitation.

*Disabled Ecologies: Lessons From a Wounded Desert*by Sunaura Taylor

In* Disabled Ecologies*, Sunaura Taylor tells the story of the environmental contamination of an aquifer beneath Tucson, Arizona and the long-term effects on the landscape and largely Mexican-American community surrounding it. Taylor weaves together the accounts of the residents affected by the contamination across generations and the ways in which humans and ecosystems can be disabled due to the harm of ecological disaster. These stories illustrate how disability affects all life in an ecosystem, and, in an age in which environmental racism and contamination cause more disability, call for a society built on robust care and connection.

*Bless the Blood: A Cancer Memoir*by Walela Nehanda

This deeply vulnerable memoir in verse by queer, non-binary, Black writer and cultural worker Walela Nehanda is a living archive of their experiences surviving leukemia and treatment in a broken US healthcare system. Nehanda draws on the stories of their ancestors to inform their experiences. Their poetic reflections speak of struggles to access compassionate care, but also the ways in which their diagnosis caused a self-awakening about how they were living and how they wanted to create a life in the face of death.

How to Tell When We Will Die: On Pain, Disability And Doom by Johanna Hedva

In Johanna Hedva’s debut essay collection, Hedva illustrates how disability and illness exist in both personal and cultural realms, emphasizing the vital importance of mutual care and understanding. Hedva displays a radical vulnerability in describing their experiences with chronic illness and pain, kink culture, astrology and more. This is a personal exploration but also an indictment of an ableist culture that reduces disabled people to drains on a capitalist society. Through it all, Hedva affirms with biting humor, anger, and tenderness that ableism harms us all.

Take a break from the news

We publish your favorite authors—even the ones you haven’t read yet. Get new fiction, essays, and poetry delivered to your inbox.