On Being Ill


Virginia Woolf - 1930
    We cannot quote Shakespeare to describe a headache. We must, Woolf says, invent language to describe pain. And though illness enhances our perceptions, she observes that it reduces self-consciousness; it is "the great confessional." Woolf discusses the cultural taboos associated with illness and explores how illness changes the way we read. Poems clarify and astonish, Shakespeare exudes new brilliance, and so does melodramatic fiction!On Being Ill was published as an individual volume by Hogarth Press in 1930. While other Woolf essays, such as A Room of One’s Own and Three Guineas, were first published by Hogarth as individual volumes and have since been widely available, On Being Ill has been overlooked. The Paris Press edition features original cover art by Woolf’s sister, the painter Vanessa Bell. Hermione Lee’s Introduction discusses this extraordinary work, and explores Woolf’s revelations about poetry, language, and illness.

Coming of Age on Zoloft: How Antidepressants Cheered Us Up, Let Us Down, and Changed Who We Are


Katherine Sharpe - 2012
    Katherine Sharpe, the former editor of Seed magazine’s ScienceBlogs.com, addresses the questions that millions of young men and women are struggling with. “Where does my personality end and my prescription begin?” “Do I have a disease?” “Can I get better on my own?” Combining stout scientific acumen with first-person experience gained through her own struggle with antidepressants, Sharpe leads the reader through a complex subject, a guide towards a clearer future for all.

Mean Little Deaf Queer: A Memoir


Terry Galloway - 2009
    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.

Alice: Princess Andrew of Greece


Hugo Vickers - 2000
    Amidst all the jewels, and velvet and coronets, and the fine uniforms, she exuded an unworldly simplicity. Seated with the royal family, she was a part of them, yet somehow distanced from them. Inasmuch as she is remembered at all today, it is as this shadowy figure in gray nun's clothes..."Princess Alice, mother of Prince Phillip, was something of a mystery figure even within her own family. She was born deaf, at Windsor Castle, in the presence of her grandmother, Queen Victoria, and brought up in England, Darmstadt, and Malta.In 1903 she married Prince Andrew of Greece and Denmark, and from then on her life was overshadowed by wars, revolutions, and enforced periods of exile. By the time she was thirty-five, virtually every point of stability was overthrown. Though the British royal family remained in the ascendant, her German family ceased to be ruling princes, her two aunts who had married Russian royalty had come to savage ends, and soon afterwards Alice's own husband was nearly executed as a political scapegoat.The middle years of her life, which should have followed a conventional and fulfilling path, did the opposite. She suffered from a serious religious crisis and at the age of forty-five was removed from her family and placed in a sanitarium in Switzerland, where she was pronounced a paranoid schizophrenic. As her stay in the clinic became prolonged, there was a time where it seemed she might never walk free again. How she achieved her recovery is just one of the remarkable aspects of her story.

The Danger Within Us: America's Untested, Unregulated Medical Device Industry and One Man's Battle to Survive It


Jeanne Lenzer - 2017
    An estimated 10 percent of Americans are implanted with medical devices -- like pacemakers, artificial hips, cardiac stents, etc.The overwhelming majority of high-risk implanted devices have never undergone a single clinical trial. The FDA lets device manufacturers decide whether to report serious complications or deaths that may have been caused by their products.The average salary and compensation package for CEOs of the 18 publicly traded medical device companies in the U.S. was $1.3 million and $15.4 million respectively as of 2015. In The Danger Within Us, award-winning journalist Jeanne Lenzer brings these horrifying statistics to life through the story of one working class man who, after his "cure" nearly kills him, ends up in a battle for justice against the medical establishment. His crusade leads Lenzer on a journey through the dark underbelly of the medical device industry, a fascinating and disturbing world that hasn't been written about before. What Lenzer exposes will shock readers: rampant corruption, elaborate cover-ups, shameless profiteering, and astonishing lack of oversight, all of which leads to dangerous devices (from artificial hips to pacemakers) going to market and into our bodies. In the vein of America's Bitter Pill and A Civil Action, The Danger Within Us is a meticulously researched and propulsive read that will fill you with anger and indignation, a stirring call for reform, and a must-read for anyone who cares about the future of American healthcare.

Brilliant Imperfection: Grappling with Cure


Eli Clare - 2017
    It saves lives, manipulates lives, and prioritizes some lives over others. It provides comfort, makes profits, justifies violence, and promises resolution to body-mind loss. Clare grapples with this knot of contradictions, maintaining that neither an anti-cure politics nor a pro-cure worldview can account for the messy, complex relationships we have with our body-minds.The stories he tells range widely, stretching from disability stereotypes to weight loss surgery, gender transition to skin lightening creams. At each turn, Clare weaves race, disability, sexuality, class, and gender together, insisting on the nonnegotiable value of body-mind difference. Into this mix, he adds environmental politics, thinking about ecosystem loss and restoration as a way of delving more deeply into cure.Ultimately Brilliant Imperfection reveals cure to be an ideology grounded in the twin notions of normal and natural, slippery and powerful, necessary and damaging all at the same time.

The Tsar's Dwarf


Peter H. Fogtdal - 2006
    He takes her to St. Petersburg against her will to make her a jester in his court. Her brilliance and sarcastic wit help her forge an existence amidst the squalor and lice-ridden world of dwarves in early 18th-century Russia. After finally succumbing to the repeated sexual advances of the Tsar's favorite dwarf Lukas, she develops sincere feelings for him and her life seems bearable - at least until she is banished to live as an exhibit in the Tsar's Curiosity Cabinet, a twisted museum of human deformity.

Girl in Need of a Tourniquet: Memoir of a Borderline Personality


Merri Lisa Johnson - 2010
    Johnson describes the feeling of "bleeding out", unable to tell where she stopped and where her partner began. A self-confessed "psycho girlfriend," she was influenced by many emotional factors from her past. She recalls her path through a dysfunctional, destructive relationship, while recounting the experiences that brought her to her breaking point. In recognizing her struggle with borderline personality disorder, Johnson is ultimately able to seek help, embarking on a soul-searching healing process. It's a path that is painful, difficult, and at times heart-wrenching, but ultimately makes her more able to love and coexist in healthy relationships.

Passing for Normal


Amy S. Wilensky - 1999
    But maybe I am not.  For most of her life, these thoughts plagued Amy Wilensky as her mind lurched and veered in ways she didn't understand and her body did things she couldn't control. While she excelled in school and led an otherwise "normal" life, she worried that beneath the surface she was a freak, that there was something irrevocably wrong with her.  Passing for Normal is Wilensky's emotionally charged account of her lifelong struggle with the often misunderstood disorders Tourette's syndrome and obsessive-compulsive disorder.  A powerful witness to her own dysfunction, Wilensky describes the strain it bore on her relationships with the people she thought she knew best: her family, her friends, and herself.  Confronting the labels we apply to ourselves and others--compulsive, crazy, out of control--Amy describes her symptoms, diagnosis, and her treatment with courage and a healthy dose of humor, gradually coming to terms with the absurdities of a life beset by irrational behavior.  This compelling narrative, by turnstragic and comic, broadly extends our understanding of the won-drously complex human mind, and, with subtlety and grace, challenges our notion of what it is to be "normal."

What Doesn't Kill You: A Life with Chronic Illness - Lessons from a Body in Revolt


Tessa Miller - 2021
    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.

Camouflage: The Hidden Lives of Autistic Women


Sarah Bargiela - 2019
    This graphic novel offers an engaging and accessible insight into the lives and minds of autistic women, using real-life case studies.The charming illustrations lead readers on a visual journey of how women on the spectrum experience everyday life, from metaphors and masking in social situations, to friendships and relationships and the role of special interests.Fun, sensitive and informative, this is a fantastic resource for anyone who wishes to understand how gender affects autism, and how to create safer supportive and more accessible environments for women on the spectrum.

Disability and the Gospel: How God Uses Our Brokenness to Display His Grace


Michael S. Beates - 2012
    Now, as more families like Michael's are affected by a growing number of disorders and difficulties ranging from autism to food allergies, the need for programs and paradigm shifts is greater than ever. Beates thus seeks to motivate churches to pursue ministry to children and adults with developmental disabilities. He works through key Bible passages on brokenness and disability to develop helpful principles for believers and churches, teaching them first to embrace their own brokenness and then to embrace those who are more physically and visibly broken.

The Boy Who Loved Too Much: A True Story of Pathological Friendliness


Jennifer Latson - 2017
    It also makes him enormously vulnerable. Eli lacks the innate skepticism that will help his peers navigate adolescence more safely—and vastly more successfully. Journalist Jennifer Latson follows Eli over three critical years of his life as his mother, Gayle, must decide whether to shield Eli entirely from the world and its dangers or give him the freedom to find his own way and become his own person. By intertwining Eli and Gayle’s story with the science and history of Williams syndrome, the book explores the genetic basis of behavior and the quirks of human nature. More than a case study of a rare disorder, however, The Boy Who Loved Too Much is a universal tale about the joys and struggles of raising a child, of growing up, and of being different.

The Disabled God: Toward a Liberatory Theology of Disability


Nancy L. Eiesland - 1994
    Highlights the hidden history of people with disabilities in church and society. Proclaiming the emancipatory presence of the disabled God, the author maintains the vital importance of the relationship between Christology and social change. Eiesland contends that in the Eucharist, Christians encounter the disabled God and may participate in new imaginations of wholeness and new embodiments of justice.

Uniquely Human: A Different Way of Seeing Autism


Barry M. Prizant - 2015
    This perspective leads to therapies focused on ridding individuals of autistic symptoms. In Uniquely Human, Dr. Barry M. Prizant suggests a major shift in understanding autism: Instead of classifying "autistic" behaviors as signs of pathology, he sees them as strategies to cope with a world that feels chaotic and overwhelming. Rather than curb these behaviors, it's better to enhance abilities, build on strengths, and offer supports that will naturally lead to more desirable behavior and a better quality of life. In fact, argues Dr. Prizant, attempts to eliminate autistic behaviors may actually interfere with important developmental processes.Including inspiring stories and practical advice drawn from Dr. Prizant's four-decade career working in universities, schools, hospitals, and in private practice, Uniquely Human offers a compassionate and insightful perspective that parents, professionals, and family members will find uplifting and hopeful.