Too Late to Die Young: Nearly True Tales from a Life


Harriet McBryde Johnson - 2005
    Born with a congenital neuromuscular disease, Johnson has never been able to walk, dress, or bathe without assistance. With assistance, she passionately celebrates her life's richness and pleasures and pursues a formidable career as an attorney and activist. Whether rolling on the streets of Havana, on the floor of the Democratic National Convention in Chicago, or in an auditorium at Princeton debating philosopher Peter Singer, Harriet McBryde Johnson defies every preconception about people with disabilities, and shows how a life, be it long or short, is a treasure of infinite value.

Don't Call Me Inspirational: A Disabled Feminist Talks Back


Harilyn Rousso - 2013
    She addresses the often absurd and ignorant attitudes of strangers, friends, and family. Rousso also examines her own prejudice toward her disabled body, and portrays the healing effects of intimacy and creativity, as well as her involvement with the disability rights community. She intimately reveals herself with honesty and humor and measures her personal growth as she goes from "passing" to embracing and claiming her disability as a source of pride, positive identity, and rebellion. A collage of images about her life, rather than a formal portrait, Don't Call Me Inspirational celebrates Rousso's wise, witty, productive, outrageous life, disability and all.

Sitting Pretty: The View from My Ordinary Resilient Disabled Body


Rebekah Taussig - 2020
    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.

Waist-High in the World: A Life Among the Nondisabled


Nancy Mairs - 1997
    In a blend of intimate memoir and passionate advocacy, Nancy Mairs takes on the subject woven through all her writing: disability and its effect on life, work, and spirit.

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 Two Kinds of Decay


Sarah Manguso - 2008
    In this captivating story, Manguso recalls her struggle: arduous blood cleansings, collapsed veins, multiple chest catheters, depression, the deaths of friends and strangers, addiction, and, worst of all for a writer, the trite metaphors that accompany prolonged illness. A book of tremendous grace, The Two Kinds of Decay transcends the very notion of what an illness story can and should be.

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist


Judith Heumann - 2020
    From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people.As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act.Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers


Toni Bernhard - 2010
    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.

The Collected Schizophrenias: Essays


Esmé Weijun Wang - 2019
    Schizophrenia is not a single unifying diagnosis, and Esme Weijun Wang writes not just to her fellow members of the "collected schizophrenias" but to those who wish to understand it as well. Opening with the journey toward her diagnosis of schizoaffective disorder, Wang discusses the medical community's own disagreement about labels and procedures for diagnosing those with mental illness, and then follows an arc that examines the manifestations of schizophrenia in her life. In essays that range from using fashion to present as high-functioning to the depths of a rare form of psychosis, and from the failures of the higher education system and the dangers of institutionalisation to the complexity of compounding factors such as PTSD and Lyme disease, Wang's analytical eye, honed as a former lab researcher at Stanford, allows her to balance research with personal narrative. An essay collection of undeniable power, The Collected Schizophrenias dispels misconceptions and provides insight into a condition long misunderstood.

Tender Points


Amy Berkowitz - 2015
    Named after the diagnostic criteria for fibromyalgia, the book-length lyric essay explores sexual violence, gendered illness, chronic pain, and patriarchy through the lenses of lived experience and pop culture (Twin Peaks, Teenage Mutant Ninja Turtles, noise music, etc.). Teaching Guide (or Book Club Guide) here: bit.ly/2aqJV2X

The Empathy Exams


Leslie Jamison - 2014
    She draws from her own experiences of illness and bodily injury to engage in an exploration that extends far beyond her life, spanning wide-ranging territory—from poverty tourism to phantom diseases, street violence to reality television, illness to incarceration—in its search for a kind of sight shaped by humility and grace.

The Valedictorian of Being Dead: The True Story of Dying Ten Times to Live


Heather B. Armstrong - 2019
    Armstrong writes about her experience as one of only a few people to participate in an experimental treatment for depression involving ten rounds of a chemically induced coma approximating brain death.For years, Heather B. Armstrong has alluded to her struggle with depression on her website. But in 2016, Heather found herself in the depths of a depression she just couldn’t shake, an episode darker and longer than anything she had previously experienced. This book recalls the torturous eighteen months of suicidal depression she endured and the month-long experimental study in which doctors used propofol anesthesia to quiet all brain activity for a full fifteen minutes before bringing her back from a flatline. Ten times. The experience wasn’t easy. Not for Heather or her family. But a switch was flipped, and Heather hasn’t experienced a single moment of suicidal depression since. The Valedictorian of Being Dead brings to light a groundbreaking new treatment for depression.

So Sad Today: Personal Essays


Melissa Broder - 2016
    In the fall of 2012, she went through a harrowing cycle of panic attacks and dread that wouldn't abate for months. So she began @sosadtoday, an anonymous Twitter feed that allowed her to express her darkest feelings, and which quickly gained a dedicated following. In So Sad Today, Broder delves deeper into the existential themes she explores on Twitter, grappling with sex, death, love, low self-esteem, addiction, and the drama of waiting for the universe to text you back. With insights as sharp as her humor, Broder explores—in prose that is both gutsy and beautiful, aggressively colloquial and achingly poetic—questions most of us are afraid to even acknowledge, let alone answer, in order to discover what it really means to be a person in this modern world.

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain


Abby Norman - 2018
    She was repeatedly hospitalized in excruciating pain, but the doctors insisted it was a urinary tract infection and sent her home with antibiotics. Unable to get out of bed, much less attend class, Norman dropped out of college and embarked on what would become a years-long journey to discover what was wrong with her. It wasn't until she took matters into her own hands--securing a job in a hospital and educating herself over lunchtime reading in the medical library--that she found an accurate diagnosis of endometriosis.In Ask Me About My Uterus, Norman describes what it was like to have her pain dismissed, to be told it was all in her head, only to be taken seriously when she was accompanied by a boyfriend who confirmed that her sexual performance was, indeed, compromised. Putting her own trials into a broader historical, sociocultural, and political context, Norman shows that women's bodies have long been the battleground of a never-ending war for power, control, medical knowledge, and truth. It's time to refute the belief that being a woman is a preexisting condition.

Little Panic: Dispatches from an Anxious Life


Amanda Stern - 2018
    Plagued with fear that her friends and family will be taken from her if she's not watching--that her mother will die, or forget she has children and just move away--Stern treats every parting as her last. Shuttled between a barefoot bohemian life with her mother in Greenwich Village, and a sanitized, stricter world of affluence uptown with her father, Stern has little she can depend on. And when Etan Patz disappears down the block from their MacDougal Street home, she can't help but believe that all her worst fears are about to come true. Tenderly delivered and expertly structured, Stern's memoir is a document of the transformation of New York City and a deep, personal, and comedic account of the trials and errors of seeing life through a very unusual lens.