Book picks similar to
The Irregular School: Exclusion, Schooling and Inclusive Education by Roger Slee
disability
disability-studies
ed-policy-history
equity
Show Me Where It Hurts: Living with Invisible Illness
Kylie Maslen - 2020
I work the way I do because of my body, I vote the way I do because of my body and I live the way I do because of my body. It is not my body that is at fault, but society's failure to deal with bodies like mine. I might be in pain, but I am whole. I refuse to have the difficult parts cropped out.Kylie Maslen has been living with invisible illness for twenty years-more than half her life. Its impact is felt in every aspect of her day-to-day existence- from work to dating; from her fears for what the future holds to her struggles to get out of bed some mornings. Drawing on pop music, art, literature and online culture, Maslen explores the lived experience of invisible illness with sensitivity and wit, drawing back the veil on a reality many struggle-or refuse-to recognise. Show Me Where it Hurts- Living with Invisible Illness is a powerful collection of essays that speak to those who have encountered the brush-off from doctors, faced endless tests and treatments, and endured chronic pain and suffering. But it is also a bridge reaching out to partners, families, friends, colleagues, doctors- all those who want to better understand what life looks like when you cannot simply show others where it hurts.
Together: A Memoir of a Marriage and a Medical Mishap
Judy Goldman - 2019
Together
is her unforgettable account of the struggle to regain their "normal" life and a nuanced portrait of a marriage tested.
When Judy Goldman's husband of almost four decades reads a newspaper ad for an injection to alleviate back pain, the outpatient procedure sounds like the answer to his longtime backaches. But rather than restoring his tennis game, the procedure leaves him paralyzed from the waist down--a phenomenon none of the doctors the family consults can explain. Overnight, Goldman's world is turned upside down. Though she has always thought of herself as the polite, demure wife opposite her strong, brave husband, Goldman finds herself thrown into a new role as his advocate, navigating byzantine hospital policies, demanding and refusing treatments, seeking solutions to help him win back his independence. Along the way, Goldman flashes back to her memories of their life together. As she tries envision her family's future, she discovers a new, more resilient version of herself. Together is a story of the life we imagine versus the life we lead--an elegant and empathetic meditation on partnership, aging, and, of course, love.
Accessing the Future: A Disability-Themed Anthology of Speculative Fiction
Kathryn AllanMargaret Killjoy - 2015
Teeming with space pirates, battle robots, interstellar travel and genetically engineered creatures, every story and image is a quality, crafted work of science fiction in its own right, as thrilling and fascinating as it is worthy and important. These are stories about people with disabilities in all of their complexity and diversity, that scream with passion and intensity. These are stories that refuse to go gently.
An Anatomy of Pain: How the Body and the Mind Experience and Endure Physical Suffering
Abdul-Ghaaliq Lalkhen - 2021
We hurt ourselves, we feel pain, we seek help from a professional or learn to avoid certain behaviors that cause pain. But the story of what goes on in our body is far from simple. Even medical practitioners themselves often fail to grasp the complexities between our minds and bodies and how they interact when dealing with pain stimulus. Throughout history we’ve tried to prevent and mediate the effects of pain—which has only resulted in a highly medicated population and a booming opiates industry. Written by a medical expert trained as an anesthesiologist, An Anatomy of Pain is the first book to clearly explain the current issues and complexities surrounding the treatment of pain and how society deals with those in pain, as well as how our bodies relate to pain. Common conception still equates pain with tissue damage but that is only a very small part of the story—the organ which produces pain is the brain. Case studies show that a woman who has undergone a c-section reports dramatically less pain than a patient who has had kidney stones removed in a similarly invasive operation. The soldier who drags himself or herself to safety after being shot deals with pain in a remarkably different way from someone suffering a similar injury on a street. The truth is that pain is a complex mix of nerve endings, psychological state, social preconceptions, and situational awareness. Filled with case studies and medical history, this enlightening book offers a crash course in all aspects of pain, from chronic to acute, and walks us through the current landscape of pain treatments—from medication (including opioids) to electrical nerve stimulation. Whether it’s a mild ache or severe discomfort, we all encounter pain in our lives and “this splendid book—informative, empathic, and wise—about a universal experience will surely promote healing” (Booklist, starred review).
The Rejected Body: Feminist Philosophical Reflections on Disability
Susan Wendell - 1996
Among the topics it addresses are who should be identified as disabled; whether disability is biomedical, social or both; what causes disability and what could 'cure' it; and whether scientific efforts to eliminate disabling physical conditions are morally justified.Wendell provides a remarkable look at how cultural attitudes towards the body contribute to the stigma of disability and to widespread unwillingness to accept and provide for the body's inevitable weakness.
How Can I Talk If My Lips Don't Move: Inside My Autistic Mind
Tito Rajarshi Mukhopadhyay - 2008
When he was three years old, Tito was diagnosed as severely autistic, but his remarkable mother, Soma, determined that he would overcome the problem by teaching him to read and write. The result was that between the ages of eight and eleven he wrote stories and poems of exquisite beauty, which Dr. Oliver Sacks called amazing and shocking. Their eloquence gave lie to all our assumptions about autism.Here Tito goes even further and writes of how the autistic mind works, how it views the outside world and the normal people he deals with daily, how he tells his stories to the mirror and hears stories back, how sounds become colors, how beauty fills his mind and heart. With this work, Tito whom Portia Iversen, co-founder of Cure Autism Now, has described as a window into autism such as the world has never seen gives the world a beacon of hope. For if he can do it, why can't others?Brave, bold, and deeply felt, this book shows that much we might have believed about autism can be wrong. Boston Globe
My Leaky Body: Tales from the Gurney
Julie Devaney - 2012
Julie Devaney takes us on a journey through the health care system as she is diagnosed and treated for ulcerative colitis. In and out of emergency rooms in Vancouver and Toronto, she’s poked, prodded, and abandoned to a closet at one point, bearing the helplessness and indignities of a system that at best confuses a patient into silence.Raw, harrowing, and darkly funny, Julie Devaney argues convincingly for fixes to the system and better training for all medical personnel. As she recovers, she sets out to do just that: setting up a gurney on stage at workshops and conferences across the country to teach Bedside Manners 101 and to advocate for repairs to the system.Part memoir, part love story, part revolutionary manifesto, My Leaky Body is politically astute, gooey like cake batter, and raw like ulcerated bowels. Devaney writes the book that will heal her aching heart and relax her strictured rectum as she weaves stories from professional and public interactions with tales from her gurney.
Unstrange Minds: Remapping the World of Autism
Roy Richard Grinker - 2007
His search took him to Africa, India, and East Asia, to the National Institutes of Mental Health, and to the mountains of Appalachia. What he discovered is both surprising and controversial: There is no true increase in autism. Grinker shows that the identification and treatment of autism depends on culture just as much as on science. As more and more cases of autism are documented, doctors are describing the disorder better, school systems are coding it better--and children are benefiting. Filled with moving stories and informed by the latest science, Unstrange Minds is unlike any other book on autism. It is a powerful testament to a father's quest for the truth, and is urgently relevant to anyone whose life is touched by one of history's most puzzling disorders.
Planet of the Blind
Stephen Kuusisto - 1997
Yet he grew up pretending he could see. Planet of the Blind tells his story - the years of a lonely childhood spent behind bottle-lens glasses, the consuming fear of ridicule and derision, the struggle through college that brings him from obesity to anorexia. With his nose pressed into the spine of a book in furious attempts to read, riding a bicycle at insane speeds, never truly knowing the face of his first lover, he stumbles through half a lifetime enraged and mortified.This is the record of a handicapped life; but it is also an extraordinary literary achievement. Kuusisto has managed to translate his opaque, kaleidoscopic world of shape and colour into poetic and luminous prose. Planet of the Blind conveys life as it is lived by one whose visual impressions are 'at once beautiful and largely useless', and for whom normality is continuously transformed by his blindness into an intense aesthetic experience.
Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties
Laurie Edwards - 2008
Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived--they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness.Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals.Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand
Julie Rehmeyer - 2017
The top specialists in the world were powerless to help, and scientific research on her disease was at a near standstill. She was running out of money. And she was all alone, with no one to care for her.Having exhausted the plausible ideas, Rehmeyer turned to an implausible one. She followed the advice of strangers she'd met on the Internet. They struck her as crazy but they had recovered from chronic fatigue syndrome as severe as hers. Leaving behind everything she owned, she drove into the desert, testing the theory that mold in her home and belongings was making her sick. Stripped of the life she'd known and the future she'd imagined, Rehmeyer felt as though she were going to the desert to die.But she didn't die. She used her scientific savvy and investigative journalism skills to find a path to wellness and uncovered how shocking scientific neglect and misconduct had forced her, and millions of others, to go it alone. In stunning prose, Rehmeyer describes how her illness transformed her understanding of science, medicine, and spirituality. Through the Shadowlands will bring scientific authority to a misunderstood disease while telling an incredible and compelling story of tenacity, resourcefulness, acceptance, and love.
Bodyminds Reimagined: (Dis)ability, Race, and Gender in Black Women’s Speculative Fiction
Sami Schalk - 2018
Bridging black feminist theory with disability studies, Schalk demonstrates that this genre's political potential lies in the authors' creation of bodyminds that transcend reality's limitations. She reads (dis)ability in neo-slave narratives by Octavia Butler (Kindred) and Phyllis Alesia Perry (Stigmata) not only as representing the literal injuries suffered under slavery, but also as a metaphor for the legacy of racial violence. The fantasy worlds in works by N. K. Jemisin, Shawntelle Madison, and Nalo Hopkinson—where werewolves have obsessive-compulsive-disorder and blind demons can see magic—destabilize social categories and definitions of the human, calling into question the very nature of identity. In these texts, as well as in Butler’s Parable series, able-mindedness and able-bodiedness are socially constructed and upheld through racial and gendered norms. Outlining (dis)ability's centrality to speculative fiction, Schalk shows how these works open new social possibilities while changing conceptualizations of identity and oppression through nonrealist contexts.
One in a Hundred Thousand
Linni Ingemundsen - 2021
But Sander has a rare medical condition that affects one in a hundred thousand people. It means his growth is stunted, and it seems the biggest, strongest and loudest guys get all the attention. But Sander notices the little things other people miss, and he’s about to make a big impact...
Asperger's on the Inside
Michelle Vines - 2016
The book follows Michelle in exploring her past and takes the reader with her on her journey to receiving and accepting her diagnosis. Instead of rehashing widely available Asperger's information, Michelle focuses on discussing the thoughts, feelings and ideas that go along with being an Aspie, giving us a rare peek into what it really feels like to be a person on the spectrum. A must read for all those who enjoy deep personal stories or have a loved one on the spectrum that they wish to understand better.
Knowing Why: Adult-Diagnosed Autistic People on Life and Autism
Elizabeth Bartmess - 2018
Odasso writes in this anthology: "You spend a lot of time wondering what's wrong without ever knowing why." This anthology includes essays from a diverse group of adult-diagnosed autistic people. Our essays reflect the value of knowing why--why we are different from so many other people, why it can be so hard to do things others can take for granted, and why there is often such a mismatch between others' treatment of us and our own needs, skills, and experiences. Essay topics include recovering from burnout, exploring our passions and interests, and coping with sensory overload, especially in social situations. If you know you're autistic, are beginning to wonder, share similarities with autistic people, or want to support an adult autistic friend or family member--or if you simply want to know why it's so important that autistic adults know we're autistic--this book is for you.