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By Alice Wong. 2022
NATIONAL BESTSELLER • ONE OF USA TODAY'S MUST-READ BOOKS • This groundbreaking memoir offers a glimpse into an activist's journey…to finding and cultivating community and the continued fight for disability justice, from the founder and director of the Disability Visibility Project&“Alice Wong provides deep truths in this fun and deceptively easy read about her survival in this hectic and ableist society.&” —Selma Blair, bestselling author of Mean BabyIn Chinese culture, the tiger is deeply revered for its confidence, passion, ambition, and ferocity. That same fighting spirit resides in Alice Wong. Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer. From her love of food and pop culture to her unwavering commitment to dismantling systemic ableism, Alice shares her thoughts on creativity, access, power, care, the pandemic, mortality, and the future. As a self-described disabled oracle, Alice traces her origins, tells her story, and creates a space for disabled people to be in conversation with one another and the world. Filled with incisive wit, joy, and rage, Wong&’s Year of the Tiger will galvanize readers with big cat energy.
By Alice Wong. 2020
&“Disability rights activist Alice Wong brings tough conversations to the forefront of society with this anthology. It sheds light on…the experience of life as an individual with disabilities, as told by none other than authors with these life experiences. It's an eye-opening collection that readers will revisit time and time again.&” —Chicago TribuneOne in five people in the United States lives with a disability. Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people, just in time for the thirtieth anniversary of the Americans with Disabilities Act,From Harriet McBryde Johnson&’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
By Jonathan Raban. 2023
A poignant memoir of love, trauma, and recovery after a life-changing stroke, twinned to a powerful account of his father's…experience in World War II, by a winner of the National Book Critics Circle Award.&“A beautiful, compelling memoir...Raban&’s final work is a gorgeous achievement.&” —Ian McEwan, New York Times best-selling author of Lessons In June 2011, just days before his sixty-ninth birthday, Jonathan Raban was sitting down to dinner with his daughter when he found he couldn&’t move his knife to his plate. Later that night, at the hospital, doctors confirmed what all had suspected: that he had suffered a massive hemorrhagic stroke, paralyzing the right side of his body. Once he became stable, Raban embarked on an extended stay at a rehabilitation center, where he became acquainted with, and struggled to accept, the limitations of his new body—learning again how to walk and climb stairs, attempting to bathe and dress himself, and rethinking how to write and even read.Woven into these pages is an account of a second battle, one that his own father faced in the trenches during World War II. With intimate letters that his parents exchanged at the time, Raban places the budding love of two young people within the tumultuous landscape of the war&’s various fronts, from the munition-strewn beaches of Dunkirk to blood-soaked streets of Anzio. Moving between narratives, his and theirs, Raban artfully explores the human capacity to adapt to trauma, as well as the warmth, strength, and humor that persist despite it. The result is Father and Son, a powerful story of mourning, but also one of resilience.
By Marilyn Davidson Elliot. 2018
A daughter’s inspiring biography of her father, who lost his sight in a massive maritime disaster—and went on to build…a rewarding life and career.Eric Davidson was a beautiful, fair-haired toddler when the historic Halifax Explosion struck, devastating the Nova Scotia capital and killing almost two thousand people while seriously injuring thousands more. Eric lost both eyes—a tragedy that his mother never fully recovered from. Eric, however, was positive and energetic. He also developed a fascination with cars and how they worked—and he later decided, against all likelihood, to become a mechanic. Assisted by his brothers, who read to him from manuals, he worked hard, passed examinations, and carved out a decades-long career. This is the true story of his remarkable life and relentless determination, as told by his daughter.
By Katharine Butler Hathaway. 2000
This early 20th century memoir of a woman&’s faith in the face of debilitating disease is a &“remarkably un-self-pitying book…remains poignant and truthful&” (Publishers Weekly). &“You must not miss it . . . It is the kind of book that cannot come into being without great living and great suffering and a rare spirit behind it.&” —The New York Times 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. The Little Locksmith charts Katharine&’s struggle to transcend physical limitations and embrace her life, her body, and herself. Her spirit and courage prevail as she expands her world far beyond the boundaries prescribed by her family and society: she attends Radcliffe College, forms deep friendships, begins to write, and in 1921, purchases a house of her own that she fashions into a space for guests, lovers, and artists. Revealing and inspirational, The Little Locksmith stands as a testimony to Katharine&’s aspirations and desires—for independence, love, and the pursuit of her art. &“A powerful revelation of spiritual truth&” —The Boston Globe &“Katharine Butler Hathaway . . . was the kind of heroine whose deeds are rarely chronicled . . . [She took] a life which fate had cast in the mold of a frightful tragedy and redesign[ed] it into a quiet, modest work of art.&” —The New Yorker
By James M. Odato. 2021
&“This biography provides valuable insight into the personality behind one of the most influential disability rights publications. A genuine page-turner.&”…—Fred Pelka, author of What We Have Done Author, advocacy journalist, disability rights activist, feminist, and founder of Mouth magazine, Lucy Gwin (1943—2014) made her mark by helping those in &“handicaptivity&” find their voice. Gwin produced over one hundred issues of the magazine—one of the most radical and significant disability rights publications—and masterminded its acerbic, sometimes funny, and often moving articles about people from throughout the disability community. In this engrossing biography, James M. Odato provides an intimate portrait of Gwin, detailing how she forged her own path into activism. After an automobile accident left her with a brain injury, Gwin became a tireless advocate for the equal rights of people she termed &“dislabled.&” More than just a publisher, she fought against corruption in the rehabilitation industry, organized for the group Not Dead Yet, and much more. With Gwin&’s story at the center, Odato introduces readers to other key disability rights activists and organizations, and supplies context on current contentious topics such as physician-assisted suicide. Gwin&’s impact on disability rights was monumental, and it is time her story is widely known.
By Faye Linda Wachs. 2023
Losing her smile to synkinesis after unresolved Bell’s palsy changed how Faye Linda Wachs was seen by others and her…internal experience of self. In Metamorphosis, interviewing over one hundred people with acquired facial difference challenged her presumptions about identity, disability, and lived experience. Participants described microaggressions, internalizations, and minimalizations and their impact on identity. Heartbreakingly, synkinesis disrupts the ability to have shared moments. When one experiences spontaneous emotion, wrong nerves trigger misfeel and misperception by others. One is misread by others and receives confusing internal information. Communication of and to the self is irrevocably damaged. Wachs describes the experience as a social disability. People found a host of creative ways to reinvigorate their sense of self and self-expression. Like so many she interviewed, Wachs experiences a process of change and growth as she is challenged to think more deeply about ableism, identity, and who she wants to be.
By Julia Watts Belser. 2023
Open the Bible, and disability is everywhere. Moses stutters and thinks himself unable to answer God's call. Isaac's blindness lets…his wife trick him into bestowing his blessing on his younger son. Jesus heals the sick the blind, the paralyzed, and the possessed. For centuries, these stories have been told and retold by commentators who treat disability as misfortune, as a metaphor for spiritual incapacity, or as a challenge to be overcome.Loving Our Own Bones turns that perspective on its head. Drawing insights from the hard-won wisdom of disabled folks who've forged difference into fierce and luminous cultural dissent, Belser offers fresh and unexpected readings of familiar biblical stories, showing how disability wisdom can guide us all toward a powerful reckoning with the complexities of the flesh. She talks back to biblical commentators who traffic in disability stigma and shame, challenging interpretations that demean disabled people and diminish the vitality of disabled lives. And she shows how Sabbath rest can be a powerful counter to the relentless demand for productivity, an act of spiritual resistance in a culture that makes work the signal measure of our worth.With both a lyrical love of tradition and incisive political analysis, Belser braids spiritual perspectives together with keen activist insights-inviting readers to claim the power and promise of spiritual dissent, to nourish their own souls through the revolutionary art of radical self-love.
By Andrea Lytle Peet. 2023
The incredible story of a young woman living with ALS, who defies all odds by finishing fifty marathons and, in…turn, inspires people to &“go on, be brave.&”Andrea Lytle Peet was thirty-three years old—an urban planner living in D.C., newly married, and a triathlete—when she received the death sentence of an ALS diagnosis (also known as Lou Gehrig's disease). After grappling with the fact that she will likely become paralyzed and die within two to five years, Andrea experienced an unexpected spark that changes her outlook in the most magnificent way. Inspired by Jon Blais, famous for finishing the IRONMAN World Championship while fighting the same disease, Andrea sets an "impossible" goal to become the first person with ALS to complete a marathon in all fifty U.S. states on her recumbent trike—since she is no longer able to run. In her mission, Andrea recaptures the freedom that racing always gave her and inspires others to appreciate what our bodies can do. Her mindset shifts to accepting that although she is dying faster than she might have otherwise, we are all on the same path. Andrea, along with her husband and ALS community, prove that we all have choices in how we spend our precious lives—no matter what challenges we face. Hope Fights Back chronicles what happens when we choose to live instead of waiting to die. It is a "love letter to life" and a beautiful love story between Andrea and her husband, David. Andrea&’s words are awe-inspiring for athletes and non-athletes alike. The reader intimately witnesses Andrea&’s tenacity, determination and bravery, not only in accomplishing her fifty marathons goal, but in her day-to-day life with ALS. In a world where &“hope&” sometimes feels quiet and aspirational, Andrea reveals that hope is, instead, a valiant warrior that changes everything when it fights back. In Hope Fights Back, readers will be empowered by Andrea's force as an athlete and a woman fighting the battle of her life. For readers of Until I Say Goodbye, Let Your Mind Run and Between Two Kingdoms, Hope Fights Back is a magnetic and radiant story filled with soul-baring honesty, love and true grit. A documentary about Andrea&’s triumphant journey, Go On, Be Brave, will premier at the 2023 Santa Barbara International Film Festival.
By Traci Medford-Rosow, Kevin Coughlin. 2018
By Joseph English. 2024
Joseph English was living his best life when a car accident changed everything. He suffered life changing injuries, and the…doctors told him there was no chance of recovery. Facing life as a quadriplegic, Joe lost his business, his romantic partner, and, for a while, his will to carry on. His story, told with extensive contributions from his family and friends, charts his journey from being dead at the roadside to finding something to live for as he recounts his progress from injury to survival. With absolute candour, Joe tells the whole story of his accident, his rehabilitation, and his recovery. Full of advice and suggestions from professionals in the rehabilitation journey, this book is remarkably frank about the struggles Joe has endured, and the times when he felt as if life wasn’t worth living. It addresses all the most difficult issues around life after paralysis, including loss of identity and letting go of the past, as well as providing practical information on topics such as assistive technology, financial claims and legal support. It also outlines the various roles of those in the rehabilitation team. His doctors and specialist practitioners give their unique perspectives into their processes and procedures, helping to demystify them, while Joe’s family and friends ask the kinds of questions readers will be asking too, making this an invaluable guide to what to expect for anyone going through a similar experience. The book shows – by lived example – that there is always more to live for. It is essential reading for those with paraplegia, quadriplegia and other spinal injuries, and their families, friends and care-givers. It is also valuable for neuropsychologists, neurologists and other rehabilitation therapists, as well as students in medicine, nursing, allied health and neuropsychology.
By Jason Jobin. 2023
On the cusp of adulthood, a young writer’s life is stalled as he faces cancer that keeps coming back.Doctors used…to tell him he was cured. That was a long time ago. Ever since he first left home at age nineteen, writer Jason Jobin has had cancer. Every five years, like clockwork, it relapses, and yet he always pulls through, surrounded by friends and family but isolated by illness. Chemotherapy, surgeries, radiation — these persist, but they aren’t the milestones of his life. They can’t be, he won’t let them be.From helicoptering into the Yukon backcountry to teaching in an elite writing program, Jason strives to enter adulthood with some normalcy, but his is the life of “a special case.” And he does live. He lives working at a deli for minimum wage as his students come down the hill to shop and ask what he’s doing there. He lives measuring out nausea pills and benzos while his roommates drink and smoke and party. He lives lying to girlfriends about past diagnoses because what can you say? What do you build on rubble? He lives high and low and in between. Again he is sick, again he is cured. It’s miraculous. A great gift. But never enough.Told in short glimpses, this story redefines what it means to survive. Jobin brings together the illuminated moments of loss and joy as he navigates chronic illness and builds from it something new and wildly unexpected.
By Andrew Leland. 2023
A witty, winning, and revelatory personal narrative of the author’s transition from sightedness to blindness and his quest to learn…about blindness as a rich culture all its own “ The Country of the Blind is about seeing—but also about marriage and family and the moral and emotional challenge of accommodating the parts of ourselves that scare us. A warm, profound, and unforgettable meditation on how we adjust to new ways of being in the world.” —Rachel Aviv, author of Strangers to Ourselves 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 humor, 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
By Kathy Jankowski. 2023
Agatha Tiegel Hanson (1873-1959) is regarded as a seminal figure in Deaf history for her writing, advocacy, and leadership, though…her accomplishments merit recognition within the larger context of American history as well. Barely fifteen years old in 1888, Tiegel Hanson became one of the first women to attend the nation's only college for Deaf students, the National Deaf-Mute College, now known as Gallaudet University. Amid the hostility and skepticism of male students and faculty, she achieved exemplary academic success and was the first woman to earn a Bachelor of Arts degree from the college. Upon facing stringent campus restrictions and exclusion from male-only organizations and activities, Tiegel Hanson cofounded a society for female students. Her prerequisite graduation presentation, "The Intellect of Woman," was a powerful oratory that urged women to “move on till all barriers crumble and fall.” Throughout her life, Agatha Tiegel Hanson worked to advance the rights of Deaf people and women, and she was a passionate advocate of sign language rights. Her contributions include creative written works as well as influential treatises. She served in leadership positions at several Deaf organizations and, along with her husband, noted Deaf architect Olof Hanson, she played a vital role in the Deaf cultural life of the time. In Agatha Tiegel Hanson: Our Places in the Sun, author Kathy Jankowski presents a portrait of this trailblazer, and celebrates her impact on the Deaf community and beyond. This biography will be of interest to those already familiar with Tiegel Hanson’s legacy as well as to readers who are discovering her extraordinary life for the first time.
An inspirational and truly intersectional memoir from global humanitarian and social justice advocate Eddie Ndopu-a queer, Black wheelchair user and…one of the UN Secretary-General's 17 Advocates for the SDGs.There are many more examples throughout my life where, if I had listened to people who told me to be comfortable with merely existing, I would now be a shrunken version of myself. I would not have emerged as one of Amnesty International's most influential campaigners straight out of college. I would not have gone on to graduate from Oxford. I would not have been appointed as a United Nations SDG Advocate. I would be eating mashed-up vegetables instead of drinking Dom Pérignon through a straw.Eddie Ndopu was born in 1990 with Spinal Muscular Atrophy (SMA), a rare degenerative motor-neuron disease, and told that he wouldn't live beyond age five. Now, thirty-one years old and stronger than ever, he continues to celebrate each turn around the sun as an existential defiance of the odds.Having fought his way through South Africa's archaic and ableist school system, Eddie became the first-ever disabled African to be given a full scholarship to Oxford University. Gay, Black and a wheelchair user, he is now an eminent thought-leader and holds positions at two of the most important organizations on the planet: the United Nations and the World Economic Forum.From flirting with diplomats on dancefloors to wearing lipstick to board meetings, Eddie has spent his life challenging the bias of those who occupy the highest echelons of power and prestige. Through redefining the boundaries of identity and ability, Sipping Dom Pérignon Through a Straw is Eddie's odds-obliterating story that illustrates what true leadership can look like and reminds us to never forget that you are bigger and more expansive than the space you currently occupy.(P) 2023 Hachette Audio
By John Cotter. 2023
“I was in the car the first time music seemed strange: the instruments less distinct, the vocals less crisp.” John Cotter…was thirty years old when he first began to notice a ringing in his ears. Soon the ringing became a roar inside his head. Next came partial deafness, then dizziness and vertigo that rendered him unable to walk, work, sleep, or even communicate. At a stage of life when he expected to be emerging fully into adulthood, teaching and writing books, he found himself “crippled and dependent,” and in search of care. When he is first told that his debilitating condition is likely Ménière’s Disease, but that there is “no reliable test, no reliable treatment, and no consensus on its cause,” Cotter quits teaching, stops writing, and commences upon a series of visits to doctors and treatment centers. What begins as an expedition across the country navigating and battling the limits of the American healthcare system, quickly becomes something else entirely: a journey through hopelessness and adaptation to disability. Along the way, hearing aids become inseparable from his sense of self, as does a growing understanding that the possibilities in his life are narrowing rather than expanding. And with this understanding of his own travails comes reflection on age-old questions around fate, coincidence, and making meaning of inexplicable misfortune. A devastating memoir that sheds urgent, bracingly honest light on both the taboos surrounding disability and the limits of medical science, Losing Music is refreshingly vulnerable and singularly illuminating—a story that will make readers see their own lives anew.
By Jaipreet Virdi. 2020
At the age of four, Jaipreet Virdi’s world went silent. A severe case of meningitis left her alive but deaf,…suddenly treated differently by everyone. Her deafness downplayed by society and doctors, she struggled to “pass” as hearing for most of her life. Countless cures, treatments, and technologies led to dead ends. Never quite deaf enough for the Deaf community or quite hearing enough for the “normal” majority, Virdi was stuck in aural limbo for years. It wasn’t until her thirties, exasperated by problems with new digital hearing aids, that she began to actively assert her deafness and reexamine society’s—and her own—perception of life as a deaf person in America. Through lyrical history and personal memoir, Hearing Happiness raises pivotal questions about deafness in American society and the endless quest for a cure. Taking us from the 1860s up to the present, Virdi combs archives and museums in order to understand the long history of curious cures: ear trumpets, violet ray apparatuses, vibrating massagers, electrotherapy machines, airplane diving, bloodletting, skull hammering, and many more. Hundreds of procedures and products have promised grand miracles but always failed to deliver a universal cure—a harmful legacy that is still present in contemporary biomedicine. Weaving Virdi’s own experiences together with her exploration into the fascinating history of deafness cures, Hearing Happiness is a powerful story that America needs to hear.
'Uncompromising... A masterful writer poised for even more great success' - Forest Whitaker, Academy award-winning actorA memoir, penned with one…good finger, about being profoundly disabled and profoundly successful.Global humanitarian Eddie Ndopu was born with spinal muscular atrophy, a rare degenerative motor neuron disease affecting his mobility. He was told that he wouldn't live beyond age five and yet, Ndopu thrived. He grew up loving pop music and haute couture, lip syncing to the latest hits, and was the only wheelchair user at his school, where he flourished academically. By his late teens, he had become a sought-after speaker, travelling the world to give talks on disability justice. When he is later accepted on a full scholarship into Oxford University, he soon learns that it's not just the medical community he must defy - it's the educational one too. In Sipping Dom Pérignon Through a Straw, we follow Ndopu, sporting his oversized, bejewelled sunglasses, as he scales the mountain of success, only to find exclusion, discrimination, and neglect waiting for him on the other side. As he soars professionally, sipping champagne with world leaders, he continues to feel the loneliness and pressure of being the only one in the room. Determined to carve out his place in the world, he must challenge bias at the highest echelons of power and prestige. Searing, vulnerable and inspiring, Ndopu's remarkable journey to reach beyond ableism, reminds us never to let anyone else define our limits.'Unflinching honesty and vulnerability... Prepare to be moved, enlightened, and profoundly touched' Sabrina Dhowre Elba, actress, model and UN Goodwill Ambassador
By Kristin Beale. 2017
Kristin was thrown into a disability at the age of 14, and every day since then has been a struggle…to overcome it. She has fought through the unavoidable physical stresses of her condition for over a decade and, even more, the heavy psychological burdens that follow closely behind. Greater Things is a raw perspective on everything from how people react differently to her situation, to learning how to navigate in and through an inaccessible world, to just trying to make the best of a crummy situation.
By Polly Atkin. 2023
'It raises the standard of nature writing. This is both radical manifesto and activism in book form'Sally Huband, author of…Sea Bean'Defiant and dazzling'Freya Bromley, author of The Tidal Year'Essential reading'Jessica J. Lee, author of Turning'Long before I knew I was sick, I knew I was breakable . . .'After years of unexplained health problems, Polly Atkin's perception of her body was rendered fluid and disjointed. When she was finally diagnosed with two chronic conditions in her thirties, she began to piece together what had been happening to her - all the misdiagnoses, the fractures, the dislocations, the bone-crushing exhaustion, the not being believed.Some of Us Just Fall combines memoir, pathography and nature writing to trace a fascinating journey through illness, a journey which led Polly to her current home in the Lake District, where outdoor swimming is purported to cure all, and where every day she turns to the natural world to help tame her illness. Polly delves into the history of her two genetic conditions, uncovering how these illnesses were managed (or not) in times gone by and exploring how best to plan for her own future. From medical misogyny and gaslighting, to the illusion of 'the nature cure', this essential, beautiful and deeply personal book examines how we deal with bodies that diverge from the norm, and why this urgently needs to change.This is not a book about getting better. This is a book about living better with illness.