Disability Memoir

They all thought he was gone. But he was alive and trapped inside his own body for ten years. In January 1988 Martin Pistorius, aged 12, fell inexplicably sick. First, he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within 18 months, he was mute and wheelchair-bound. Martin's parents were told an unknown degenerative disease left him with the mind of a baby and less than two years to live.

In The Future Is Disabled, Leah Laksmi Piepzna-Samarasinha asks some provocative questions: What if, in the near future, the majority of people will be disabled—and what if that's not a bad thing? And what if disability justice and disabled wisdom are crucial to creating a future in which it's possible to survive fascism, climate change, and pandemics and to bring about liberation?

In 2021, Gabrielle Drolet developed a condition that made her unable to use her hands. It only worsened over time, and as a writer and artist, she had to learn new ways of creating and expressing herself. The experience completely changed her life and her outlook. Look Ma, No Hands explores both the difficulty and the humour of developing chronic and life-altering pain in her twenties. Each chapter looks at a different aspect of her life touched by her disability: how she learned to write when she couldn’t type; how she learned to manage the most mundane daily tasks.

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. 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.

In 2019, Greta Morgan was on the rise. She had toured with Vampire Weekend, collaborated with Jenny Lewis, and garnered critical acclaim with her own musical projects. But in March 2020, after contracting COVID-19, she was diagnosed with spasmodic dysphonia, a neurological disorder with no known cure that left her unable to sing. Her once crystalline voice now reduced to a hush, she saw her career come to an abrupt standstill.

In 1958, Riva is one of the first children born with spina bifida to survive. Her parents and doctors are determined to "fix" her, sending the message over and over again that she is broken. That she will never have a job, a romantic relationship, or an independent life. Enduring countless medical interventions, Riva tries her best to be a good girl and a good patient in the quest to be cured. Everything changes when, as an adult, Riva is invited to join a group of artists, writers, and performers who are building Disability Culture.

When Roger Rasmussen was diagnosed with prostate cancer in 2019, he did what most patients do: listened carefully, weighed his options, and tried to make peace with the life-altering decisions ahead. Then he heard about Joe Tippens' story, which led him down a rabbit hole of research into something unexpected—a compound called fenbendazole with curious case reports and a growing collection of personal accounts.

In this poignant and uplifting memoir, Dancing with the Stars sensation Amy Purdy reveals the story of how losing her legs led her to find a spiritual path. When the Las Vegas native was just nineteen, she came down with bacterial meningitis and was given less than a two percent chance of survival. In a near-death experience, she saw three figures who told her: “You can come with us, or you can stay. No matter what happens in your life, it's all going to make sense in the end." In that moment, Amy chose to live.

Writing about the rhythms and textures of what it means to live in a body that doesn’t fit, Rebekah reflects on everything from the complications of kindness and charity, living both independently and dependently, experiencing intimacy, and how the pervasiveness of ableism in our everyday media directly translates to everyday life. Disability affects all of us, directly or indirectly, at one point or another. Sitting Pretty challenges us as a society to be patient and vigilant, practical and imaginative, kind and relentless, as we set to work to write a different story.

Oksana Masters was born in Ukraine—in the shadow of Chernobyl—seemingly with the odds stacked against her. She came into the world with one kidney, a partial stomach, six toes on each foot, webbed fingers, no right bicep, and no thumbs. Her left leg was six inches shorter than her right, and she was missing both tibias.

Before becoming the actor, producer, advocate, and model that people know today, Nyle DiMarco was half of a pair of Deaf twins born to a multi-generational Deaf family in Queens, New York. At the hospital one day after he was born, Nyle “failed” his first test—a hearing test—to the joy and excitement of his parents.

Diagnosed with pathological demand avoidance (PDA) in his teenage years, Harry Thompson looks back with wit and humour at the ups and downs of family and romantic relationships, school, work and mental health, as well as his teenage struggle with drugs and alcohol. By embracing neurodiversity and emphasising that autistic people are not flawed human beings, Thompson demonstrates that some merely need to take the 'scenic route' in order to flourish and reach their full potential.

When Pepper Stetler was told that her daughter who has Down Syndrome would be regularly required to take IQ tests to secure support in school, she asked a simple question: why? In questioning the authority and relevance of the test, Stetler sets herself on a winding investigation into how the IQ test came to be the irrefutable standard for measuring intelligence. The unsettling history causes Stetler to wonder what influence this test will have over her daughter's future and whether Louisa should be taking it at all.

“At the beginning I was only a little mass of possibilities. It was my teacher who unfolded and developed them.” The Story of My Life, Helen Keller’s autobiography, is the story of that unfolding. It is the story of how, with Anne Sullivan as her guide, Keller developed from “a mass of possibilities” to become one of the most beloved and admired women in American history. With intelligence, humor and wisdom, Keller describes her passage, “from darkness into light, from isolation to friendship, companionship, knowledge, love.”

For years, Emma Carey was a regular young adult who would wake up and go about their day on autopilot, someone who would look at a sunset and feel unaffected, someone who was living, but not really alive. That is, until something happened that enabled her to really see life for the gift it is. Emma was in a skydiving accident that made her a paraplegic. This book is not just about Emma's fall from the sky and how she learned to walk without ever regaining feeling in her legs but also about the beliefs and ideas that helped her survive.

In 1997, Daniel Trush, a bright, active, outgoing twelve-year-old, collapsed on the basketball court and fell into a deep coma. Rushed to the hospital, he was found to have five previously undetected aneurysms in his brain. One had burst, causing a massive cerebral hemorrhage. While Daniel remained comatose, the uncontrolled pressure inside his skull caused him to suffer multiple strokes.

Clem Bastow grew up feeling like she’d missed a key memo on human behaviour. She found the unspoken rules of social engagement confusing, arbitrary and often stressful. Friendships were hard, relationships harder and the office was a fluorescent-lit nightmare of anxiety. It wasn’t until Clem was diagnosed as autistic, at age 36, that things clicked into focus. Clem reflects as an autistic adult on her formative experiences as an undiagnosed young person, from the asphalt playground of St Joseph's Primary School in Melbourne to working as an entertainment journalist in Hollywood.

This inspiring autobiography by Helen Keller is an account of her life from her family history up to her last years of college, supplemented by her personal letters from age 7 to 21. This edition includes letters and reports contributed by her teacher, Anne Sullivan, and the editor, John Albert Macy.

Katherine and Jay Wolf were a young couple living the dream in Southern California, but all was nearly lost when Katherine suffered a shocking near-fatal brainstem stroke and struggled to find hope in a life that looked nothing like the one they had before.

In 1895, a specialist straps five-year-old Katharine Hathaway, then suffering from spinal tuberculosis, to a board with halters and pulleys in a failed attempt to prevent her from becoming a “hunchback” like the “little locksmith” who does odd jobs at her family’s home. Forced to endure her confinement for ten years, Katharine remains immobile until age fifteen, only to find that none of it has prevented her from developing a deformity of her own.