A problem those around me wanted to fix.’‘We have all felt that uncanny sensation that someone is watching us.’‘The diagnosis helped but it didn’t fix everything.’‘Don’t fear the labels.’One in five Australians have a disability. And disability presents itself in many ways. Yet disabled people are still underrepresented in the media and in literature.Growing Up Disabled in Australia is the fifth book in the highly acclaimed, bestselling Growing Up series. It includes interviews with prominent Australians such as Senator Jordon Steele-John and Paralympian Isis Holt, poetry and graphic art, as well as more than 40 original pieces by writers with a disability or chronic illness.Contributors include Dion Beasley, Astrid Edwards, Jessica Walton, Carly-Jay Metcalfe, Gayle Kennedy and El Gibbs.

    Featuring works by so-called alternative parents who have attempted to move away from mainstream thought, this anthology carefully considers the implications of raising children with disabilities. From professional writers to novice storytellers, including original essays by Robert Rummel-Hudson, Ayun Halliday, and Kerry Cohen, this assortment of authentic, shared experiences from parents in the know is a partial antidote to the stories that misrepresent, ridicule, and objectify disabled children and their parents.

    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.

    That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.

    No one yet knew that an experimental antibiotic given to her mother had wreaked havoc on her fetal nervous system, eventually causing her to go deaf. As a self-proclaimed "child freak," she acted out her fury with her boxy hearing aids and Coke-bottle glasses by faking her own drowning at a camp for crippled children. Ever since that first real-life performance, Galloway has used theater, whether onstage or off, to defy and transcend her reality. With disarming candor, she writes about her mental breakdowns, her queer identity, and living in a silent, quirky world populated by unforgettable characters. What could have been a bitter litany of complaint is instead an unexpectedly hilarious and affecting take on life.From the Trade Paperback edition.

    Playful, wry, and conversational, One More for the People chronicles three generations in the life of the Grover family. As these idiosyncratic characters reluctantly confront adulthood, one Grover is always there to take notes. But after she’s diagnosed with a rare and potentially fatal disease (whose 81 symptoms include dramatic changes to her appearance, not to mention the dreaded possibility of having to move back home), One More for the People becomes something unexpected: a survival guide. In the spirit of Lucy Grealy’s Autobiography of a Face, Grover transforms her own misfortune into a tale as unsettling as it is entertaining.

    And many are so, so tired … But women's pain is all too often dismissed, their illnesses misdiagnosed or ignored. In medicine, man is the default human being. Any deviation is atypical, abnormal, deficient.'Fourteen years after being diagnosed with endometriosis, Gabrielle Jackson couldn't believe how little had changed in the treatment and knowledge of the disease. In 2015, her personal story kick-started a worldwide investigation into the disease by The Guardian; thousands of women got in touch to tell their own stories and many more read and shared the material. What began as one issue led Jackson to explore how women - historically and through to the present day - are under-served by the systems that should keep them happy, healthy and informed about their bodies.Pain and Prejudice is a vital testament to how social taboos and medical ignorance keep women sick and in anguish. The stark reality is that women's pain is not taken as seriously as men's. Women are more likely to be disbelieved and denied treatment than men, even though women are far more likely to be suffering from chronic pain.In a potent blend of personal memoir and polemic, Jackson confronts the private concerns and questions women face regarding their health and medical treatment. Pain and Prejudice, finally, explains how we got here, and where we need to go next.

    At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a yearslong nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better.Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications.Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.

    And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even a life-threatening illness.The author, who became ill while a university law professor in the prime of her career, tells the reader how she got sick and, to her and her partner's bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make "being sick" the heart of her spiritual practice and, through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. Whether we ourselves are sick now or not, we can learn these vital arts of living well from How to Be Sick.

    Tonguebreaker is about surviving the unsurvivable: living through hate crimes, the suicides of queer kin, and the rise of fascism while falling in love and walking through your beloved’s Queens neighborhood. Building on her groundbreaking work in Bodymap, Tonguebreaker is an unmitigated force of disabled queer-of-color nature, narrating disabled femme-of-color moments on the pulloff of the 80 in West Oakland, the street, and the bed. Tonguebreaker dreams unafraid femme futures where we live—a ritual for our collective continued survival.

    Doctors couldn’t explain why, and Jacinta wondered if it might be in her head. She could barely function, was frequently unable to eat or get out of bed for days, and gradually turned into a shadow of herself. Eventually she got a diagnosis: Crohn’s disease. But knowing this wouldn’t stop her life from spiralling into a big mess of doctors, hospitals and medical disasters.What’s most extraordinary about Jacinta’s story is how common it is. Nearly half of Australians live with a chronic illness, but most of these conditions are not obvious, often endured in secrecy and little understood. They are unseen.With compelling candour, Jacinta trains a microscope on the unique challenges of living with an invisible condition. She lays bare the struggles with shame, loss of identity, the threat of mortality, and the profoundly complex relationships between the chronically ill and their own bodies, as well as with those around them. It’s a story of trying to fix an unfixable illness, getting beaten down then clawing back up, and how that experience can shape a life.

    She did.Sophie navigates being the only black scientist in her lab while studying the very disease, HIV, that she hides from her coworkers.For Victoria, coming out as a transgender woman was less difficult than coming out as bipolar.Author Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health issues at a young age, as well as the resulting effects on her career, her relationships, and her sense of self. What she found while researching Invisible was a surprisingly large and overlooked population with important stories to tell.Though young women with serious illness tend to be seen as outliers, young female patients are in fact the primary demographic for many illnesses. They are also one of the most ignored groups in our medical system--a system where young women, especially women of color and trans women, are invisible.And because of expectations about gender and age, young women with health issues must often deal with bias in their careers and personal lives. Not only do they feel pressured to seem perfect and youthful, they also find themselves amid labyrinthine obstacles in a culture that has one narrow idea of womanhood.Lent Hirsch weaves her own harrowing experiences together with stories from other women, perspectives from sociologists on structural inequality, and insights from neuroscientists on misogyny in health research. She shows how health issues and disabilities amplify what women in general already confront: warped beauty standards, workplace sexism, worries about romantic partners, and mistrust of their own bodies. By shining a light on this hidden demographic, Lent Hirsch explores the challenges that all women face.

    After all, the ogre never gets the princess. And since fairy tales are the foundational myths of our culture, how can a girl with a disability ever think she'll have a happy ending?By examining the ways that fairy tales have shaped our expectations of disability, Disfigured will point the way toward a new world where disability is no longer a punishment or impediment but operates, instead, as a way of centering a protagonist and helping them to cement their own place in a story, and from there, the world. Through the book, Leduc ruminates on the connections we make between fairy tale archetypes—the beautiful princess, the glass slipper, the maiden with long hair lost in the tower—and tries to make sense of them through a twenty-first-century disablist lens. From examinations of disability in tales from the Brothers Grimm and Hans Christian Andersen through to modern interpretations ranging from Disney to Angela Carter, and the fight for disabled representation in today's media, Leduc connects the fight for disability justice to the growth of modern, magical stories, and argues for increased awareness and acceptance of that which is other—helping us to see and celebrate the magic inherent in different bodies.

    Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological.The Lady's Handbook for Her Mysterious Illness is a memoir with a mission, to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions.Ramey's pursuit of a diagnosis and cure for her own mysterious illness is a medical mystery that she says reveals a new understanding of today's chronic illnesses as ecological in nature, driven by modern changes to the basic foundations of health, from the quality of our sleep, diet, and social connection to the state of our microbiomes.

    But humans are not machines. When we are ill, we experience our illness: we become scared, distressed, tired, weary. Our illnesses are not just biological conditions, but human ones. It was Arthur Kleinman, a Harvard psychiatrist and anthropologist, who saw this truth when most of his fellow doctors did not. Based on decades of clinical experience studying and treating chronic illness, The Illness Narratives makes a case for interpreting the illness experience of patients as a core feature of doctoring.Before Being Mortal, there was The Illness Narratives. It remains today a prescient and passionate case for bridging the gap between patient and practitioner.