The Future is Disabled: Books about Disability Justice & Chronic Illness for Disability Pride Month

Disability comes in as many forms as there are people with disabilities; no two stories about disability are the same, and no-one’s relationship to disability is the same as another’s. Disability Pride Month, which started in 2015, is an incredibly necessary time to celebrate and explore our relationship to disability, to our bodies and minds, and the way society treats disability.

Below you’ll find an extremely wide range of stories from disabled authors and artists, each capturing their own unique experiences. Some take a look act the big picture of disability justice and activism, providing manifestos for how we can envision the future of the movement. Others take a more personal approach — memoirs about living in a disabled body, experiences with medical prejudice, pain, and self-acceptance. We hope that in these books, you’ll be inspired to stock more stories about disability on both your personal shelves, and in your bookshops, libraries and beyond!

Dancing After Ten

By Vivian Chong & Georgia Webber

9781683963165 / Fantagraphics / HB  / £24.99 / Out now

In Dancing After Ten, Chong teams up with cartoonist Georgia Webber to tell her journey of life after becoming blind. This extraordinary journey, rendered with rare sensitivity and rawness, takes her from the depths of despair to the realm of possibility, as she realises her artistic vision in a variety of expressions — including singing, stand-up, drumming, running, and dance. Releasing simultaneously with the Toronto debut of Chong’s dance-theatre production ‘dancing with the universe’, this graphic novel is an inspirational tale and a powerful work of graphic medicine.

The Care We Dream Of

Liberatory & Transformative Approaches to LGBTQ+ Health

By Zena Sharman

9781551528601 / Arsenal Pulp Press / PB  / £18.99 / Out now

Through a series of essays (by the author and others) and interviews, this book by the editor of the Lambda Literary Award-winning anthology The Remedy offers possibilities — grounded in historical examples, present-day experiments, and dreams of the future — for more liberatory and transformative approaches to LGBTQ+ health and healing.

The Shape of Sound

By Fiona Murphy

9781922330512 / Text Publishing / PB / £12.99 / Out now

Blending memoir with observations on the healthcare industry, The Shape of Sound is a story about the corrosive power of secrets, stigma and shame, and how deaf experiences and disability are shaped by economics, social policy, medicine and societal expectations.

Crip Kinship

The Disability Justice & Art Activism of Sins Invalid

By Shayda Kafai

9781551528649 / Arsenal Pulp Press / PB  / £16.99 / Out now

Crip Kinship explores the art activism of Sins Invalid, a San Francisco Bay Area-based performance project, and its radical imaginings of what disabled, queer, trans, and gender-nonconforming bodyminds of colour can do: how they can rewrite oppression, and how they can gift us with transformational lessons for our collective survival. Grounded in the disability justice framework, Crip Kinship investigates the revolutionary survival teachings that disabled, queer of colour community offers to all our bodyminds.

Swollening

By Jason Purcell

9781551528854 / Arsenal Pulp Press / PB  / £15.99 / Out now

Part poetic experiment and part memoir, Swollening attempts to diagnose what has been undiagnosable, tracing an uneven path from a lifetime of swallowing bad feelings — homophobia in its external and internalised manifestations, heteronormativity, anxiety surrounding desire, aversion to sex — to a body in revolt. In poems that speak using the grammar and logics of sickness, Purcell offers a dizzying collision of word and image that is the language of pain alongside the banality of living on.

Pacemaker

By David Toms

9781838312657 / Banshee Press / HB  / £12.99 / Out now

Every time I write about my heart, I write about walking. Every time I write about walking, I write about my heart. What is it like to be born with a congenital heart defect? What does it mean to live knowing your heart will one day fail you? How do you walk without moving a muscle? In Pacemaker, poet David Toms deftly blends creative nonfiction, poetry and diary in an account of resisting, confronting, and living with a rare heart condition. His experience, including his hospitalisation during the Covid-19 pandemic, speaks to all of us in its exploration of what it means to live in a fragile yet resilient body, to walk multiple challenging paths, and to always a find a way to keep moving.

The Tiger and the Cage

A Memoir of a Body in Crisis

By Emma Bolden

9781593767235 / Soft Skull Press / PB  / £15.99 / Out now

In Catholic grade school, Emma Bolden has a strange experience with a teacher that unleashes a short-lived, persistent coughing spell — something the medical establishment will later use against her as she struggles through chronic pain and fainting spells that coincide with her menstrual cycle. With The Tiger and the Cage, Bolden uses her own experience as the starting point for a journey through the institutional misogyny of Western medicine — from a history of labelling women ‘hysterical’ and parading them as curiosities to a lack of information on causes or cures for endometriosis, despite more than a century of documented cases.

The Future is Disabled

By Leah Lakshmi Piepxna-Samarasinha

9781551528915 / Arsenal Pulp Press / PB  / £18.99 / Out now

In The Future Is Disabled, Leah Lakshmi Piepzna-Samarasinha asks some provocative questions: What if the majority of people will be disabled in the near future — and what if that’s not a bad thing? And what if disability justice and disabled wisdom become crucial if we’re going to create a future where surviving fascism, climate change and pandemics, and creating liberation, are possible? Building on the work of her game-changing book Care Work: Dreaming Disability Justice, Piepzna-Samarasinha writes about disability justice at the end of the world, documenting the many ways disabled people kept and are keeping each other — and the rest of the world — alive during Trump, fascism and the COVID-19 pandemic. Other subjects include crip interdependence, care and mutual aid in real life, disabled community building, and disabled art practice as survival and joy. 

Bleed

Destroying Myths and Misogyny in Endometriosis Care

By Tracey Lindeman

9781770416536 / ECW Press / PB  / £18.99 / Out now

Have you ever been told that your pain is imaginary? That feeling better just takes yoga, CBD oil, and the blood of a unicorn on a full moon? That’s the reality of the more than 190 million people suffering the excruciating condition known as endometriosis. This disease affecting one in ten cis women and uncounted numbers of others is chronically overlooked, underfunded, and misunderstood — and improperly treated across the medical system. Discrimination and medical gaslighting are rife in endo care, often leaving patients worse off than when they arrived.

Journalist Tracey Lindeman knows it all too well. Decades of suffering from endometriosis propelled the creation of BLEED — part memoir, part investigative journalism, and all scathing indictment of how the medical system fails patients. Through extensive interviews and research, BLEED tracks the modern endo experience to the origins of medicine and how the system gained its power by marginalising women. Using an intersectional lens, BLEED dives into how the system perpetuates misogyny, racism, classism, ageism, transphobia, fatphobia, and other prejudices to this day.

A Matter of Appearance

A Memoir of Chronic Illness

By Emily Wells

9781911710011 / Seven Stories Press / PB  / £9.99 / Out now

Emily Wells, a former ballerina, spent her childhood dancing through intense, whole-body pain she assumed was normal for someone used to pushing her body to its limits. For years, no doctor could tell Wells what was wrong with her, or they told her it was ‘all in her head.’ It was only in college that she learned the name for the illness she had been suffering from all her life: Behcet’s Disease, a rare congenital disorder causing blood vessel inflammation throughout the body, arthritis, and swelling of the brain.

In A Matter of Appearance, Wells, now a professor of creative writing at UC Irvine, traces her journey as she tries to understand and define this specific and personal pain, internally and externally. She draws on the critical works of Freud, Sontag, and others to explore the intersection between gender, pain, and language, tracing a line from the ‘hysteria patients’ documented at the Salpêtrière Hospital in nineteenth-century Paris through to the contemporary New Age healers of Los Angeles and beyond. At the crux of this is the dilemma of how to express in words an experience that is both private and public, subjective, and quantifiable.

The Country of the Blind

By Andrew Leland

9781984881427 / Penguin Press / HB  / £25.99 / Out 18th July 2023

We meet Andrew Leland as he’s suspended in the liminal state of the soon-to-be blind: he’s midway through his life with retinitis pigmentosa, a condition that ushers those who live with it from sightedness to blindness over years, even decades. He grew up with full vision, but starting in his teenage years, his sight began to degrade from the outside in, such that he now sees the world as if through a narrow tube. Soon — but without knowing exactly when — he will likely have no vision left.

Full of apprehension but also dogged curiosity, Leland embarks on a sweeping exploration of the state of being that awaits him: not only the physical experience of blindness but also its language, politics, and customs. He negotiates his changing relationships with his wife and son, and with his own sense of self, as he moves from his mainstream, ‘typical’ life to one with a disability. Part memoir, part historical and cultural investigation, The Country of the Blind represents Leland’s determination not to merely survive this transition but to grow from it — to seek out and revel in that which makes blindness enlightening.

Thought-provoking and brimming with warmth and humour, The Country Of The Blind is a deeply personal and intellectually exhilarating tour of a way of being that most of us have never paused to consider — and from which we have much to learn.

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