18 Books That Will Help You Better Understand Disability And Chronic Illness
Memoirs and essays that celebrate disabled bodies, combat ableism, call for disability justice, and describe the myriad ways disabled folk live in and contribute to this world.
Editor's note: Though BuzzFeed News style guide uses people-first language in writing about disability, in this post, we have deferred to the authors’ preferred identity-first language.
Disability Visibility: First-Person Stories From the Twenty-First Century, edited by Alice Wong (Vintage; out now)
Disability activist Alice Wong collects a wide range of disabled voices in this vital, intersectional anthology. In the horrifying essay “The Isolation of Being Deaf in Prison,” Jeremy Woody, formerly incarcerated at a state prison in Georgia, recounts the administration's refusal to provide an ASL interpreter; because of this, he was denied access to educational courses, couldn’t understand the doctors at his medical visits, and was even recorded as pleading guilty when he was unable to argue his case in court. While many of the essays point toward the systemic injustices in the treatment of disabled folk, some are uplifting and show the support in disabled communities. In “Why My Novel Is Dedicated to My Disabled Friend Maddy,” for example, A. H. Reaume recounts how, when a head injury made it difficult to edit her writing, she hired her disabled friend Maddy to help. There's an essay about the intersection of racism and disability among medical staff toward an Indigenous woman, about the issues with a free public transit system for disabled folk, about art classes and guide dogs, and so much more. Disability Visibility is a must-read for those seeking a better understanding of disability and activism.
Sitting Pretty: The View From My Ordinary Resilient Disabled Body by Rebekah Taussig (HarperOne; out now)
Rebekah Taussig shares her experiences of being disabled in eight thought-provoking and stunning essays, from her happiness as a child pulling herself as she played with her siblings; to teaching disability-themed classes; to marrying, divorcing, finding love again, and buying a home. Though Taussig moved her body with joy and confidence as a child, she found her environment told her a different story about her body as she grew older. She noticed how many spaces weren’t made for her needs, saw the pitying looks strangers gave her, and heard ableist narratives from the media, in which disabled bodies like hers were either weak or objects for other people’s inspiration. Gradually, she stopped feeling comfortable in her body, though eventually, she learned to reclaim it. While all the essays in this collection are fantastic, I especially enjoyed her essay describing the problems with kindness and the frequently threatening and condescending ways nondisabled folk try to “help” her. Her essays on teaching and feminism are equally provocative and will help nondisabled people confront ableism.
Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc (Coach House Books; out now)
Disfigured entwines Leduc’s memoir of living with cerebral palsy with an examination of how disabilities are depicted in fairy tales. “Why,” Leduc asks, “in all these stories ... was it always the individual who needed to change, and never the world?” In other words, nothing is wrong with the disabled person; it’s the society and culture surrounding them that creates barriers. Yet, in fairy tales, where anything is possible, disabled characters are either the villains or cursed heroes who will have their disabilities erased by the narrative’s end. Throughout her analysis of fairy tales, Leduc describes her experiences with cerebral palsy, from multiple surgeries to cruel classmates to confronting ableism in the hospital she worked in. It’s an essential read for anyone who loves fairy tales.
The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me by Keah Brown (Atria; out now)
This refreshing and funny essay collection about being a Black disabled woman is written by disability activist and creator of the #DisabledAndCute viral campaign Keah Brown. Brown’s sense of humor permeates each essay. Her exploration of the intersections between race and disability; her hopes of finding romance; and her relationships with her nondisabled twin, college friends, and more will make readers laugh and cry. If you enjoy audiobooks, I highly recommend listening to the audiobook which Brown narrates. Hearing her voice makes her vulnerability and humor even more impactful.
Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma (Twelve/Grand Central; out now)
Disability rights activist and lawyer Haben Girma describes her childhood and how she became Harvard Law School’s first Deafblind graduate in this powerful and often funny memoir written in short episodes. Her parents were refugees of the Eritrean and Ethiopian war, and Girma credits them with teaching her a resilience that she applied to navigating the world as a Deafblind child and later as a college law student. Haben sees her disability as a source of strength and a way to make the world a better place rather than as a weakness. For audiobook listeners, Haben’s narration is expressive and gripping.
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner (Beacon Press; out now)
Judith Heumann is an international disability rights activist who helped draft the legislation that became the Individuals with Disabilities Education Act, which ensured disabled children access to schools. She also cofounded the World Institute on Disability and was appointed by President Obama as the first Special Advisor on International Disability Rights, making her one of the most influential figures in disability activism. This memoir chronicles her life from infancy — when she became paralyzed after contracting polio at 18 months old — to when she led the longest sit-in of a government building in US history, pressuring the Carter administration to implement protections for disabled people that eventually led to the Americans with Disabilities Act. Being Heumann is an essential and engaging look at recent disability history.
Broken Places & Outer Spaces: Finding Creativity in the Unexpected by Nnedi Okorafor (Simon & Schuster/TED; out now)
In this searing memoir, Okorafor — the award-winning author of many books, including Binti and Akata Witch — describes her paralysis and slow recovery after a scoliosis surgery went wrong. Before the surgery, Okorafor was a star track athlete and had not envisioned herself as a writer. During her recovery, she has morphine-induced hallucinations of bugs and portals. She begins taking notes in the margins of the science fiction books she reads as solace. These notes slowly transform into something more when she returns to college and begins writing in earnest. This slim memoir, loosely based on Okorafor’s 2017 TED Talk, is a gripping and beautiful examination of finding creativity amid devastation.
We Are Never Meeting in Real Life by Samantha Irby (Vintage; out now)
This hilarious essay collection by Samantha Irby describes various moments from her life with sarcastic honesty: her Crohn’s disease diagnosis, taking care of an ill grandmother, working in a vet clinic, adopting a maniacal cat she names Helen Keller, awkward sex stories, and more. While this essay collection ranges in topics, Irby’s descriptions of her childhood traumas, and how childhood traumas can increase the risk of adult chronic illness, manage to be moving, poignant, and hilarious at the same time. Irby also describes her life with Crohn’s disease in Meaty and Wow, No Thank You.
Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha (Arsenal Pulp Press; out now)
These passionate essays focus on disability justice and the experiences of disabled queer, trans, Black, and brown people. Piepzna-Samarasinha writes about the importance of accessibility, honoring femme pain, prioritizing self-care, pushing back against ableist assumptions, and creating disabled communities. She also highlights queer and POC disabled history. This collection is a revolutionary and eye-opening look into disability justice and activism.
[Don't] Call Me Crazy, edited by Kelly Jensen (Algonquin Young Readers; out now)
This engaging YA anthology collects #OwnVoices essays about mental illness from authors and celebrities, including Victoria (V.E.) Schwab, Adam Silvera, Libba Bray, and S. Jae-Jones. In one essay, actor Reid Ewing describes how his body dysmorphia caused him to become addicted to plastic surgery. In another, Victoria Schwab describes getting stuck in mental black holes and how writing is the only way to get her unstuck. Examining dermatillomania, bipolar disorder, anorexia, suicide ideation, and more, these immensely relatable essays combat the stigma behind mental illness.
Golem Girl by Riva Lehrer (One World; out now)
Artist Riva Lehrer was born to Jewish parents in 1958 with spina bifida, a diagnosis that was considered a death sentence and one which philosopher Peter Singer used as his central example as to why disabled children should be allowed to die. Her parents were determined to fix her, and she underwent many painful surgeries and medical interventions at their bequest. As an adult, she joins a creative community trying to build a disabled culture, and there she finds her calling to be an artist and to paint the beauty of disabled bodies. She also discovers her sexuality and finds a place in the LGBTQ+ community. This memoir is a beautiful celebration of disabled bodies and includes many photographs of Lehrer’s art.
Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain by Abby Norman (Bold Type Books; out now)
Abby Norman combines her memoir of fighting for a diagnosis for what turned out to be endometriosis with a searing history of how medical professionals have belittled women’s pain and how the healthcare system has failed women. Norman was in college when she first began experiencing excruciating pain and unusual hair growth. She loses 30 pounds, her leg goes numb, and she’s forced to drop out of college, yet her doctor insists she has a UTI and sends her home with antibiotics. She decides to educate herself and turns to medical journals to discover what’s wrong with her body. What she finds is a trail of women’s pain being ignored.
The Collected Schizophrenias by Esmé Weijun Wang (Graywolf; out now)
In this profound and vivid collection of essays, Wang describes her diagnosis and experience with schizoaffective disorder and chronic illness as well as societal perceptions of schizophrenia and mental illness. The essays move through various topics, from the way schizophrenia is portrayed in the media to the institutionalization of people with mental illnesses to the complications of compounding medical diagnoses. Both analytical and vulnerable, this collection challenges deep-seated assumptions about schizophrenia and mental illness.
The Perseverance by Raymond Antrobus (Tin House; March 30)
Winner of multiple awards upon its 2018 publication in the UK, including the Ted Hughes Award, The Perseverance relates Antrobus’s experiences of being biracial and d/Deaf in sharp and beautiful poems. “Deaf voices go missing like sound in space / and I have left earth to find them,” he says at the close of his poem “Deaf Hearing World.” While most of the collection addresses his own lived experiences, he also has poems about Helen Keller, Ted Hughes, and the murder of Deaf women Jesula Gelin, Vanessa Previl, and Monique Vincent in Haiti. These poems are expressive and beautiful and will leave readers thinking differently about sound and silence.
What Doesn't Kill You: A Life with Chronic Illness — Lessons from a Body in Revolt by Tessa Miller (Henry Holt & Company; Feb. 2)
In this riveting memoir, journalist Tessa Miller describes the sudden onset of severe Crohn’s disease in her twenties: One moment she’s enjoying a successful career in New York City, and in the next, she’s doubled over in pain, unable to control her bowels. With evocative and often gruesome details, she paints the story of life with a chronic illness, describing traumatic experiences in hospitals, the way medical professionals often belittle their female patients, and how illnesses affect relationships. In addition to her memoir, she analyzes studies and statistics about healthcare and chronic illness in the US, including racial and gender discrimination. It’s a fascinating and disturbing read.
Fierce and Delicate: Essays on Dance and Illness by Renée K. Nicholson (West Virginia University Press; May 1)
Renée Nicholson began ballet classes as a child. Her talent and dedication to ballet lead her to elite ballet schools, studying abroad in Russia with prima ballerinas, and eventually teaching ballet. Ballet taught her a fierce competitiveness and loneliness as well as an intimate knowledge of her body and its limitations. When rheumatoid arthritis begins swelling her joints at the age of 21, making it difficult to walk, let alone dance, she abandons ballet for writing, reinventing herself while retaining that intimate bodily knowledge. Nicholson’s previous experience as a poet is evident in this lyrical and fascinating memoir about reinventing one’s body and purpose.
Diary of a Young Naturalist by Dara McAnulty (Milkweed Editions; June 8)
Fifteen-year-old Dara McAnulty and most of his North Irish family — all but his dad — are autistic. Through a year of lyrical and profound diary entries, McAnulty describes his unique way of perceiving the world around him and his connection to nature. “Lying below the oak,” he writes, “I can feel it surging below the ground, the roots curling around me, a restless energy feeding me strength.” The natural world is intimately entwined with both his inner and outer life; he and his family share a deep respect for nature and encourage outdoor exploration as part of their children’s education. McAnulty finds joy in the smallest stone to animal scat.
A Face for Picasso: Coming of Age with Crouzon Syndrome by Ariel Henley (Farrar, Straus and Giroux; Nov. 2)
When Ariel Henley was 9 years old, she and her twin sister, Zan, were the subjects of an article in the French edition of Marie Claire about their experience of Crouzon syndrome and its treatment. The title for this YA memoir comes from a line in that article: “Their faces resembled work of Picasso.” This comparison to Picasso’s work followed Ariel to her seventh-grade art class, where the art teacher taught a unit about beauty’s relation to symmetry and how the more symmetrical a face, the more beautiful people deem it. Meanwhile, Ariel has undergone surgery after surgery to reconstruct her face until she feels like she no longer recognizes herself. This memoir explores identity, beauty, sisterhood, and the painful emotional toll of having a facial disfigurement.