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The Shaking Woman, or A History of My Nerves
By Siri Hustvedt. 2009
In this unique neurological memoir Siri Hustvedt attempts to solve her own mysterious conditionWhile speaking at a memorial event for…
her father in 2006, Siri Hustvedt suffered a violent seizure from the neck down. Despite her flapping arms and shaking legs, she continued to speak clearly and was able to finish her speech. It was as if she had suddenly become two people: a calm orator and a shuddering wreck. Then the seizures happened again and again. The Shaking Woman or A History of My Nerves tracks Hustvedt's search for a diagnosis, one that takes her inside the thought processes of several scientific disciplines, each one of which offers a distinct perspective on her paroxysms but no ready solution. In the process, she finds herself entangled in fundamental questions: What is the relationship between brain and mind? How do we remember? What is the self? During her investigations, Hustvedt joins a discussion group in which neurologists, psychiatrists, psychoanalysts, and brain scientists trade ideas to develop a new field: neuropsychoanalysis. She volunteers as a writing teacher for psychiatric in-patients at the Payne Whitney clinic in New York City and unearths precedents in medical history that illuminate the origins of and shifts in our theories about the mind-body problem. In The Shaking Woman, Hustvedt synthesizes her experience and research into a compelling mystery: Who is the shaking woman? In the end, the story she tells becomes, in the words of George Makari, author of Revolution in Mind, "a brilliant illumination for us all."A Life Impossible: Living with ALS: Finding Peace and Wisdom Within a Fragile Existence
By Steve Gleason, Jeff Duncan. 2024
From NFL player Steve Gleason, a powerful, inspiring memoir of love, heartbreak, resilience, family, and remarkable triumph in the face…
of ALSIn 2011, three years after leaving the NFL, Steve Gleason was diagnosed with ALS, a terminal disease that takes away the ability to move, talk, and breathe. Doctors gave him three years to live. He was thirty-three years old. As Steve says, he is now ten years past his expiration date.His memoir is the chronicle of a remarkable life, one filled with optimism and joy, despite the trauma and pain and despair he has experienced. Writing using eye-tracking technology, Gleason covers his pre-ALS life through the highs and lows of his NFL career with the New Orleans Saints, where he made one of the most memorable plays in Saints history, leading to a victory in the first post-Katrina home game, uplifting the city, making him a hero, and reflected in a nine-foot bronze statue outside the Superdome. Then came his heartbreaking diagnosis. Gleason lost all muscle function, he now uses Stephen Hawking-like technology to communicate, and breathes with the help of a ventilator. This book captures Gleason and his wife Michel&’s unmatched resilience as they reinvent their lives, refuse to succumb to despair, and face his disease realistically and existentially.This unsparing portrait argues that a person's true strength does not reside solely in one&’s body but also in the ability to face unfathomable adversity and still be able to love and treasure life.Disability Intimacy: Essays on Love, Care, and Desire
By Edited by Alice Wong. 2024
The much-anticipated follow up to the groundbreaking anthology Disability Visibility: another revolutionary collection of first-person writing on the joys and…
challenges of the modern disability experience, and intimacy in all its myriad forms.What is intimacy? More than sex, more than romantic love, the pieces in this stunning and illuminating new anthology offer broader and more inclusive definitions of what it can mean to be intimate with another person. Explorations of caregiving, community, access, and friendship offer us alternative ways of thinking about the connections we form with others—a vital reimagining in an era when forced physical distance is at times a necessary norm. But don't worry: there's still sex to consider—and the numerous ways sexual liberation intersects with disability justice. Plunge between these pages and you'll also find disabled sexual discovery, disabled love stories, and disabled joy. These twenty-five stunning original pieces—plus other modern classics on the subject, all carefully curated by acclaimed activist Alice Wong—include essays, photo essays, poetry, drama, and erotica: a full spectrum of the dreams, fantasies, and deeply personal realities of a wide range of beautiful bodies and minds. Disability Intimacy will free your thinking, invigorate your spirit, and delight your desires.Let's Talk About Aging Parents: A Real-life Guide To Solving Problems With 27 Essential Conversations
By Laura Tamblyn Watts. 2024
Caring for an aging parent can raise a host of tricky questions, but these conversation-starting scripts, plus expert advice, will…
help you and your parent find answers. Age-proofing an older relative’s living space, figuring out powers of attorney, spotting and dealing with signs of dementia, asking them to give up the car keys or consider assisted living . . . the first step toward tackling these concerns and more is an honest, informed discussion. Here are prompts and road maps for twenty-seven essential conversations—with your parent, other family members, and health care providers—including: Does my parent need help around the house? What kind of medical issues should we look out for? Do I really need to help my parents if they’re toxic? How can my family share the caregiving load? How to approach these topics is just as important as what needs to be said, so each chapter has tips for navigating complex emotions and finding shared ground when everyone has different ideas. You’ll get informed, have a productive discussion, and make a plan—so you can get back to making the most of your time with your parent.Monthly articles focus on food, fitness, beauty, and child care using the resources of the Good Housekeeping institute. From human…
interest stories and social issues to money management and travel, the magazine will encourage positive living for today's woman.Unravelling Anti-Aging: A Critical Sociological Assessment (International Perspectives on Aging #41)
By Jason L. Powell. 2024
In a society where youthfulness and vitality are highly valued, the quest for anti-aging solutions has become increasingly popularized in…
bio-medical gerontology. However, navigating the vast sea of information, products, and treatments can be overwhelming; there is limited academic rigor and theoretic critique from sociological perspectives. This book aims to demystify the concept of anti-aging and presents critical social approaches for maintaining a healthy life. By exploring the science, lifestyle factors, and power of bio-medicine, the book will provide readers with a comprehensive monograph to unlock the politics of anti-aging drawing from social approaches.What the **** is Normal?!
By Francesca Martinez. 2014
If you grow up in a world where wrinkles are practically illegal, going bald is cause for a mental breakdown,…
and women over size zero are encouraged to shoot themselves (immediately), what the hell do you do if you’re, gasp … DISABLED? Whatever body you’re born into, the pressure to be normal is everywhere. But have you ever met a normal person? What do they look like? Where do they live? What do they eat for breakfast?And what the **** does normal mean anyway?This is the award-winning wobbly comedian Francesca Martinez’s funny, personal, and universal story of how she learned to stick two shaky fingers up to the crazy expectations of a world obsessed with being ‘normal’.The astonishing true story of trust, pain, becoming lost, and finding a way back to yourself despite it all'An intimate…
preservation of a moment in time, full of personality' THE TIMES__________Life is beautiful - even in the dark . . .Oliver Mol was happily drifting through his twenties when the migraine exploded in his head.Suddenly, he could barely function. He felt marooned. Nothing helped. Yet he was desperate to save himself.Then he found the trains. The job of train guard has intense moments of strict, regimented activity in between periods of calm serenity. It was just what Oliver needed. Not only could he do this, but also it might be a way out.Train Lord is the story of Oliver's extraordinary recovery. A journey back into the light . . .__________'Tender, vital and quietly hopeful: a tale of remaking' Guardian'Rude, raw, visceral, painful and wildly funny' Saga 'Intense and humble, Train Lord won my heart' Australian Book ReviewPassages in Caregiving: Turning Chaos into Confidence
By Gail Sheehy. 2010
“One of those rare books that can drastically lighten even the heaviest of loads.”—Rosalynn Carter“Trust me: there is no better…
guide to caregiving.” —Bill MoyersGail Sheehy, author of the groundbreaking Passages—which was a New York Times bestseller for more than three years—now brings us Passages in Caregiving. In this essential guide, the acclaimed expert on the now aging Baby Boomer generation outlines nine crucial steps for effective, successful family caregiving, turning chaos into confidence during this most crucial of life stages.Sitting Pretty: The View from My Ordinary Resilient Disabled Body
By Rebekah Taussig. 2020
A memoir-in-essays from disability advocate and creator of the Instagram account @sitting_pretty Rebekah Taussig, processing a lifetime of memories to…
paint a beautiful, nuanced portrait of a body that looks and moves differently than most.Growing up as a paralyzed girl during the 90s and early 2000s, Rebekah Taussig only saw disability depicted as something monstrous (The Hunchback of Notre Dame), inspirational (Helen Keller), or angelic (Forrest Gump). None of this felt right; and as she got older, she longed for more stories that allowed disability to be complex and ordinary, uncomfortable and fine, painful and fulfilling.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. By exploring this truth in poignant and lyrical essays, Taussig illustrates the need for more stories and more voices to understand the diversity of humanity. 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 an entirely different story.&“A manifesto to guide the longevity revolution&” (David Sinclair) for individuals, institutions, and society to adapt to the reality of living…
longer lives Thanks to increases in life expectancy, we can now expect to live for a long time. Most of us would welcome an extra day in the week, so why do so many of us view the prospect of additional years with fear and skepticism? The reason is simple: society is not currently structured to support long lives. Rather than thinking in terms of the needs of a rising number of older people, we must instead support the young and middle-aged to prepare differently for the longer futures they can expect. The Longevity Imperative outlines the innovations needed to make the most of these longer lives: substantial changes to our health system, economy, and financial sector, as well as in how we manage our careers, health, finances, and relationships. Instead of seeing longevity as a problem, economist Andrew J. Scott challenges us to view it as an opportunity. This book charts a course to address the individual, social, political, economic, and cultural changes required so that all of us—regardless of age—can live lives that are not just longer but healthier, happier, and more productive.Sam and Chester: How a Mischievous Pig Transformed the Life of My Autistic Son
By Jo Bailey-Merritt. 2016
When Sam Bailey-Merritt was just two years old, almost overnight he lost the ability to communicate or function. His mother,…
Jo, was at a loss as to what to do as she saw her son grow increasingly isolated and begin to suffer from uncontrollable meltdowns. Eventually, Sam was diagnosed with autism.Sam's condition continued to worsen and, just when Jo had all but given up hope of being able to help him, the family went on a day trip to a nearby miniature pig farm. Sam immediately bonded with a tiny ginger piglet called Chester, who stood sad and alone, apart from the rest of the litter. The connection between the boy and the animal was immediate and their unusual friendship blossomed from the moment the family brought Chester home. The tiny pig refused to leave Sam's side - it was as if he knew that Sam needed a friend. And, for the first time in five years, Jo saw her son really laugh.While Sam's confidence grew, Chester grew in a different way: the micro pig that was supposed to become the size of a Cocker Spaniel in fact ballooned to three times that size - with hilarious consequences for the family! Chester has turned Sam's life around. He now has the ability to communicate his feelings, make friends and is caring and kind towards others.Sam and Chester is the heart-warming story of how a teacup-sized ginger pig helped to transform the life of a boy with autism. It is the emotional story of a mother's fight to win back her son.From the disability rights advocate and creator of the #DisabledAndCute viral campaign, a thoughtful, inspiring, and charming collection of essays…
exploring what it means to be black and disabled in a mostly able-bodied white America. Keah Brown loves herself, but that hadn&’t always been the case. Born with cerebral palsy, her greatest desire used to be normalcy and refuge from the steady stream of self-hate society strengthened inside her. But after years of introspection and reaching out to others in her community, she has reclaimed herself and changed her perspective.In The Pretty One, Brown gives a contemporary and relatable voice to the disabled—so often portrayed as mute, weak, or isolated. With clear, fresh, and light-hearted prose, these essays explore everything from her relationship with her able-bodied identical twin (called &“the pretty one&” by friends) to navigating romance; her deep affinity for all things pop culture—and her disappointment with the media&’s distorted view of disability; and her declaration of self-love with the viral hashtag #DisabledAndCute.By &“smashing stigmas, empowering her community, and celebrating herself&” (Teen Vogue), Brown and The Pretty One aims to expand the conversation about disability and inspire self-love for people of all backgrounds.Drawing on empirical research with older South Asian migrant women, this book puts forth new understandings on how older, settled,…
migrant women construct and understand age through recollections of key life course events that are structured around gendered positions. Divesting from a Western-centric view and applying a decolonial and Black feminist lens to ageing, the author presents intersectionality and transnational positionality as useful tools to connect old age, migration and memory in critical studies on aging. Chapters flesh out life course memories at different key stages and examines how the intersections of multiple markers of identity (race, gender, language, immigration status, age, etc.) shape how older South Asian migrant women understand and experience their lives. This book will be of interest to scholars with a focus on Gender Studies, Migration Studies, Ageing Studies, and Mobility Studies.Beryl: The Making of a Disability Activist
By Dustin Galer. 2023
Beryl Potter was a reserved working-class mother of three living a decent life, or so it seemed, when a harmless…
slip and fall marked the unravelling of everything that she had known about herself and the world around her. Over the course of six years, she endured unimaginable pain. As doctors raced to save her life, her limbs and eyesight were taken from her one by one. In the span of a few years, she lost nearly half her body, her financial security, her home, her husband, and any semblance of a recognizable future. A survivor of more than one hundred surgeries, a dangerous opioid addiction, and multiple suicide attempts, Beryl Potter devoted herself to bettering the lives of other people with disabilities and made a tremendous contribution to disability awareness from the 1970s to 1990s. In this unparalleled biography, Dustin Galer demonstrates how Beryl Potter seemed to crack the code of the social system that oppressed her. By wading into the weeds of her complicated life before and after her accident, Galer leaves readers with a complex portrait of a woman who defied and challenged gender and disability norms of her time, paving the way for disability justice.Beryl: The Making of a Disability Activist
By Dustin Galer. 2023
The story of a mid-century working-class housewife whose extraordinary physical transformation empowered her to become a dynamic social activist who…
fueled a movement to create a more inclusive future for people with disabilities.Long Lives Are for the Rich is the title of a silent ominous program that affects the lives of millions…
of people. In all developed countries disadvantaged and, especially, poor people die much earlier than the most advantaged. During these shorter lives they suffer ten to twenty years longer from disabilities or chronic disease. This does not happen accidentally: health inequalities – including those between healthy and unhealthy life styles – are mainly caused by social inequalities that are reproduced over the life course. This crucial function of the life course has become painfully visible during its neoliberal reorganization since the early 1980s. Studies about aging over the life course, from birth to death, show the inhumane consequences as people get older. In spite of the enormous wealth that has been piled up in the US for a dwindling percentage of the population, there has been growing public indifference about the needs of those in jobs with low pay and high stress, but also about citizens from a broad middle class who can hardly afford high quality education or healthcare. However, this ominous program affects all: recent mortality rates show that all Americans, including the rich, are unhealthier and dying earlier than citizens of other developed countries. Moreover, the underlying social inequalities are tearing the population apart with nasty consequences for all citizens, including the rich. Although the public awareness of the consequences has been growing, neoliberal policies remain tempting for the economic and political elites of the developed world because of the enormous wealth that is flowing to the top. All this poses urgent questions of social justice. Unfortunately, the predominant studies of social justice along the life course help to reproduce these inequalities by neglecting them. This book analyzes the main dynamics of social inequality over the life course and proposes a theory of social justice that sketches a way forward for a country that is willing to invest in its greatest resource: the creative potential of its population.Normal: A Mother and Her Beautiful Son
By Magdalena Newman. 2019
A moving and “inspiring” memoir from the mother of a child with Treacher Collins syndrome, with a foreword by R.J.…
Palacio, author of Wonder (Publishers Weekly, starred review).For Magda Newman, normal was a goal—she wanted her son Nathaniel to be able to play on the playground, swim at the beach, enjoy the moments of childhood that are often taken for granted. But Nathaniel’s severe Treacher Collins syndrome—a craniofacial condition—meant that other concerns came first. Could he eat without the aid of a gastrointestinal tube? Could he hear? Would he ever be able to breathe effortlessly? In this moving memoir, Newman, with the help of her son, tells the story of raising Nathaniel, from the shock she and her husband faced when he was born, to the inspiration of Nathaniel’s own strength and quirky humor. All this while also facing both non-Hodgkins and Hodgkins lymphoma diagnoses of her own. This uplifting story of a family tackling complex and terrifying circumstances with love and resilience is a true testament to Magda and her family, and to families everywhere who quietly but courageously persist.Go the Way Your Blood Beats
By Emmett De Monterey. 2023
AN EXTRAORDINARILY MOVING AND ORIGINAL MEMOIR OF GROWING UP GAY AND DISABLED IN 1980s LONDONSHORTLISTED FOR THE SLIGHTLY FOXED BEST…
BIOGRAPHY PRIZE 2023 When Emmett de Monterey is eighteen months old, a doctor diagnoses him with cerebral palsy. Words too heavy for his twenty-five-year-old artist parents and their happy, smiling baby.Growing up in south-east London in the 1980s, Emmett is spat at on the street and prayed over at church. At his mainstream school, teachers refuse to schedule his classes on the ground floor, and he loses a stone from the effort of getting up the stairs. At his sixth form college for disabled students, he's told he will be expelled if the rumours are true, if he's gay.And then Emmett is chosen for a first-of-its-kind surgery in America which he hopes will 'cure' him, enable him to walk unaided. He hopes for a miracle: to walk, to dance, to be able to leave the house when it rains. To have a body that's everyday beautiful, to hold hands in the street. To not be gay, which feels like another word for loneliness. But the 'miracle' doesn't occur, and Emmett must reckon with a world which views disabled people as invisible, unworthy of desire. He must fight to be seen.'Vivid, engaging... this insightful memoir sheds light on the author's life as a disabled gay man who is often rendered invisible' Andrew McMillan, Guardian Book of the Day'A frank and intimate memoir written with an incredible clear-eyed intensity' Claire FullerEvery Cripple a Superhero
By Christoph Keller. 2019
'Fascinating ... compelling ... very funny' Sunday Times'A defiant call to arms ... affecting ... lingers long in the memory…
after its final page' Morning Star'A skilful act of literary witness, sharp, moving and funny' Joanne Limburg 'Christoph Keller ... ranks among the great Swiss writers' Neue Zürcher ZeitungMost stories of disability follow a familiar pattern: Life Before Accident. Life After Accident. For Christoph Keller, it was different: his childhood diagnosis with a form of Spinal Muscular Atrophy only revealed what had been with him since birth. SMA III, the 'kindest one', allows those who have it to live a long life, and it progresses slowly. There is no cure. By the age of 25, he had to use a wheelchair some of the time. 'There were two of me: Walking Me. Rolling Me.' By 32, he could still walk into a restaurant with a cane or on somebody's arm. At 45, 'Rolling Me' took over altogether.Intimate, absurdist and winningly frank, Every Cripple a Superhero is at once a memoir of life with a progressive disorder, and a profound exploration of the challenges of loving, being loved, and living a public life - navigating restaurants, aeroplanes, museums and artists' retreats - in a world not designed for you. Threaded throughout are Keller's own photographs of the unexpected beauty found in puddle-filled 'curb cuts', the pavement ramps that, left to disintegrate, form part of the urban obstacle course. Those puddles become portals into a different, truer city; and, as they do, so this book - told with humour and immense grace - begins to uncover a truer world: one where the 'normal' is not normal, where disability is far more widespread than we might think, and where there always exist, just alongside our own, the lives of everyday superheroes.