Disfigured: On Fairy Tales, Disability, and Making Space


Amanda Leduc - 2020
    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.

Sick: A Memoir


Porochista Khakpour - 2018
    For most of that time, she didn't know why. All of her trips to the ER and her daily anguish, pain, and lethargy only ever resulted in one question: How could any one person be this sick? Several drug addictions, three major hospitalizations, and over $100,000 later, she finally had a diagnosis: late-stage Lyme disease. Sick is Khakpour's arduous, emotional journey—as a woman, a writer, and a lifelong sufferer of undiagnosed health problems—through the chronic illness that perpetually left her a victim of anxiety, living a life stymied by an unknown condition.Divided by settings, Khakpour guides the reader through her illness by way of the locations that changed her course—New York, LA, New Mexico, and Germany—as she meditates on both the physical and psychological impacts of uncertainty, and the eventual challenge of accepting the diagnosis she had searched for over the course of her adult life. With candor and grace, she examines her subsequent struggles with mental illness, her addiction to the benzodiazepines prescribed by her psychiatrists, and her ever-deteriorating physical health. A story about survival, pain, and transformation, Sick is a candid, illuminating narrative of hope and uncertainty, boldly examining the deep impact of illness on one woman's life.

[Don't] Call Me Crazy


Kelly JensenStephanie Kuehn - 2018
    Because there’s no single definition of crazy, there’s no single experience that embodies it, and the word itself means different things—wild? extreme? disturbed? passionate?—to different people. (Don’t) Call Me Crazy is a conversation starter and guide to better understanding how our mental health affects us every day. Thirty-three writers, athletes, and artists offer essays, lists, comics, and illustrations that explore their personal experiences with mental illness, how we do and do not talk about mental health, help for better understanding how every person’s brain is wired differently, and what, exactly, might make someone crazy. If you’ve ever struggled with your mental health, or know someone who has, come on in, turn the pages, and let’s get talking.

A Body, Undone: Living on After Great Pain


Christina Crosby - 2016
    She was a respected senior professor of English who had celebrated her fiftieth birthday a month before. As she crested a hill, she caught a branch in the spokes of her bicycle, which instantly pitched her to the pavement. Her chin took the full force of the blow, and her head snapped back. In that instant, she was paralyzed.In A Body, Undone, Crosby puts into words a broken body that seems beyond the reach of language and understanding. She writes about a body shot through with neurological pain, disoriented in time and space, incapacitated by paralysis and deadened sensation. To address this foreign body, she calls upon the readerly pleasures of narrative, critical feminist and queer thinking, and the concentrated language of lyric poetry. Working with these resources, she recalls her 1950s tomboy ways in small-town, rural Pennsylvania, and records growing into the 1970s through radical feminism and the affirmations of gay liberation.Deeply unsentimental, Crosby communicates in unflinching prose the experience of "diving into the wreck" of her body to acknowledge grief, and loss, but also to recognize the beauty, fragility, and dependencies of all human bodies. A memoir that is a meditation on disability, metaphor, gender, sex, and love, A Body, Undone is a compelling account of living on, as Crosby rebuilds her body and fashions a life through writing, memory, and desire.

Illness as Metaphor and AIDS and its Metaphors


Susan Sontag - 1989
    By demystifying the fantasies surrounding cancer, Sontag shows cancer for what it is--just a disease. Cancer, she argues, is not a curse, not a punishment, certainly not an embarrassment and, it is highly curable, if good treatment is followed.Almost a decade later, with the outbreak of a new, stigmatized disease replete with mystifications and punitive metaphors, Sontag wrote a sequel to Illness as Metaphor, extending the argument of the earlier book to the AIDS pandemic.These two essays now published together, Illness as Metaphor and AIDS and Its Metaphors, have been translated into many languages and continue to have an enormous influence on the thinking of medical professionals and, above all, on the lives of many thousands of patients and caregivers.

Unwell Women: Misdiagnosis and Myth in a Man-Made World


Elinor Cleghorn - 2021
     Elinor Cleghorn became an unwell woman ten years ago. She was diagnosed with an autoimmune disease after a long period of being told her symptoms were anything from psychosomatic to a possible pregnancy. As Elinor learned to live with her unpredictable disease she turned to history for answers, and found an enraging legacy of suffering, mystification, and misdiagnosis.In Unwell Women, Elinor Cleghorn traces the almost unbelievable history of how medicine has failed women by treating their bodies as alien and other, often to perilous effect. The result is an authoritative and groundbreaking exploration of the relationship between women and medical practice, from the wandering womb of Ancient Greece to the rise of witch trials across Europe, and from the dawn of hysteria as a catchall for difficult-to-diagnose disorders to the first forays into autoimmunity and the shifting understanding of hormones, menstruation, menopause, and conditions like endometriosis.Packed with character studies and case histories of women who have suffered, challenged, and rewritten medical orthodoxy--and the men who controlled their fate--this is a revolutionary examination of the relationship between women, illness, and medicine. With these case histories, Elinor pays homage to the women who suffered so strides could be made, and shows how being unwell has become normalized in society and culture, where women have long been distrusted as reliable narrators of their own bodies and pain. But the time for real change is long overdue: answers reside in the body, in the testimonies of unwell women--and their lives depend on medicine learning to listen.

No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America


Ron Powers - 2017
    Braided with that history is the moving story of Powers's beloved son Kevin--spirited, endearing, and gifted--who triumphed even while suffering from schizophrenia until finally he did not, and the story of his courageous surviving son Dean, who is also schizophrenic.A blend of history, biography, memoir, and current affairs ending with a consideration of where we might go from here, this is a thought-provoking look at a dreaded illness that has long been misunderstood.

Complications: A Surgeon's Notes on an Imperfect Science


Atul Gawande - 2002
    Complications lays bare a science not in its idealized form but as it actually is--uncertain, perplexing, and profoundly human.Complications is a 2002 National Book Award Finalist for Nonfiction.

The Shaking Woman, or A History of My Nerves


Siri Hustvedt - 2009
    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 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.”

The Cancer Journals


Audre Lorde - 1980
    Includes photos and tributes to Lorde written after her death in 1992."Grief, terror, courage, the passion for survival and for more than survival, are here in the searchings of a great poet." —Adrienne Rich"This book teaches me that with one breast or none, I am still me." —Alice Walker"The forthrightness and ferocity with which Audre Lorde greeted every social injustice is in full force in this courageous exploration." —Amazon.com

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine


Michele Lent Hirsch - 2018
    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.

Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body


Martin Pistorius - 2011
    But he was alive and trapped inside his own body for ten years.In January 1988 Martin Pistorius, aged twelve, fell inexplicably sick. First he lost his voice and stopped eating. Then he slept constantly and shunned human contact. Doctors were mystified. Within eighteen 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.Martin was moved to care centers for severely disabled children. The stress and heartache shook his parents’ marriage and their family to the core. Their boy was gone. Or so they thought.Ghost Boy is the heart-wrenching story of one boy’s return to life through the power of love and faith. In these pages, readers see a parent’s resilience, the consequences of misdiagnosis, abuse at the hands of cruel caretakers, and the unthinkable duration of Martin’s mental alertness betrayed by his lifeless body.We also see a life reclaimed—a business created, a new love kindled—all from a wheelchair. Martin's emergence from his own darkness invites us to celebrate our own lives and fight for a better life for others.

The Lady's Handbook for Her Mysterious Illness


Sarah Ramey - 2020
    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.

The Center Cannot Hold: My Journey Through Madness


Elyn R. Saks - 2007
    She has managed to achieve this in spite of being diagnosed as schizophrenic and given a "grave" prognosis—and suffering the effects of her illness throughout her life.Saks was only eight, and living an otherwise idyllic childhood in sunny 1960s Miami, when her first symptoms appeared in the form of obsessions and night terrors. But it was not until she reached Oxford University as a Marshall Scholar that her first full-blown episode, complete with voices in her head and terrifying suicidal fantasies, forced her into a psychiatric hospital.Saks would later attend Yale Law School where one night, during her first term, she had a breakdown that left her singing on the roof of the law school library at midnight. She was taken to the emergency room, force-fed antipsychotic medication, and tied hand-and-foot to the cold metal of a hospital bed. She spent the next five months in a psychiatric ward.So began Saks's long war with her own internal demons and the equally powerful forces of stigma. Today she is a chaired professor of law who researches and writes about the rights of the mentally ill. She is married to a wonderful man.In The Center Cannot Hold, Elyn Saks discusses frankly and movingly the paranoia, the inability to tell imaginary fears from real ones, and the voices in her head insisting she do terrible things, as well as the many obstacles she overcame to become the woman she is today. It is destined to become a classic in the genre.

Goodbye, Again: Essays, Reflections, and Illustrations


Jonny Sun - 2021
    The pieces range from long meditations on topics like loneliness and being an outsider, to short humor pieces, conversations, and memorable one-liners.Jonny's honest writings about his struggles with feeling productive, as well as his difficulties with anxiety and depression will connect deeply with his fans as well as anyone attempting to create in our chaotic world. It also features a recipe for scrambled eggs that might make you cry.