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.

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.

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.

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.

The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me


Keah Brown - 2019
    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.

My Body Politic: A Memoir


Simi Linton - 2005
    Her memoir begins with her struggle to regain physical and emotional strength and to resume her life in the world. Then Linton takes us on the road she traveled (with stops in Berkeley, Paris, Havana) and back to her home in Manhattan, as she learns what it means to be a disabled person in America. Linton eventually completed a Ph.D., remarried, and began teaching at Hunter College. Along the way she became deeply committed to the disability rights movement and to the people she joined forces with. The stories in My Body Politic are populated with richly drawn portraits of Linton's disabled comrades, people of conviction and lusty exuberance who dance, play-and organize--with passion and commitment.My Body Politic begins in the midst of the turmoil over Vietnam and concludes with a meditation on the U.S. involvement in the current war in Iraq and the war's wounded veterans. While a memoir of the author's gradual political awakening, My Body Politic is filled with adventure, celebration, and rock and roll-Salvador Dali, James Brown, and Jimi Hendrix all make cameo appearances. Linton weaves a tale that shows disability to be an ordinary part of the twists and turns of life and, simultaneously, a unique vantage point on the world.

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.

The Undying


Anne Boyer - 2019
    For a single mother living paycheck to paycheck who had always been the caregiver rather than the one needing care, the catastrophic illness was both a crisis and an initiation into new ideas about mortality and the gendered politics of illness.A twenty-first-century Illness as Metaphor, as well as a harrowing memoir of survival, The Undying explores the experience of illness as mediated by digital screens, weaving in ancient Roman dream diarists, cancer hoaxers and fetishists, cancer vloggers, corporate lies, John Donne, pro-pain ”dolorists,” the ecological costs of chemotherapy, and the many little murders of capitalism. It excoriates the pharmaceutical industry and the bland hypocrisies of ”pink ribbon culture” while also diving into the long literary line of women writing about their own illnesses and ongoing deaths: Audre Lorde, Kathy Acker, Susan Sontag, and others.A genre-bending memoir in the tradition of The Argonauts, The Undying will break your heart, make you angry enough to spit, and show you contemporary America as a thing both desperately ill and occasionally, perversely glorious.

Smoke Gets in Your Eyes & Other Lessons from the Crematory


Caitlin Doughty - 2014
    Thrown into a profession of gallows humor and vivid characters (both living and very dead), Caitlin learned to navigate the secretive culture of those who care for the deceased.Smoke Gets in Your Eyes tells an unusual coming-of-age story full of bizarre encounters and unforgettable scenes. Caring for dead bodies of every color, shape, and affliction, Caitlin soon becomes an intrepid explorer in the world of the dead. She describes how she swept ashes from the machines (and sometimes onto her clothes) and reveals the strange history of cremation and undertaking, marveling at bizarre and wonderful funeral practices from different cultures.Her eye-opening, candid, and often hilarious story is like going on a journey with your bravest friend to the cemetery at midnight. She demystifies death, leading us behind the black curtain of her unique profession. And she answers questions you didn’t know you had: Can you catch a disease from a corpse? How many dead bodies can you fit in a Dodge van? What exactly does a flaming skull look like?Honest and heartfelt, self-deprecating and ironic, Caitlin's engaging style makes this otherwise taboo topic both approachable and engrossing. Now a licensed mortician with an alternative funeral practice, Caitlin argues that our fear of dying warps our culture and society, and she calls for better ways of dealing with death (and our dead).

Disability Visibility: First-Person Stories from the Twenty-first Century


Alice WongChristie Thompson - 2020
    Some disabilities are visible, others less apparent—but all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people.From Harriet McBryde Johnson’s account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.

My Lovely Wife in the Psych Ward


Mark Lukach - 2017
    They fell in love at eighteen, married at twenty-four, and were living their dream life in San Francisco. When Giulia was twenty-seven, she suffered a terrifying and unexpected psychotic break that landed her in the psych ward for nearly a month. One day she was vibrant and well-adjusted; the next she was delusional and suicidal, convinced that her loved ones were not safe.Eventually, Giulia fully recovered, and the couple had a son. But, soon after Jonas was born, Giulia had another breakdown, and then a third a few years after that. Pushed to the edge of the abyss, everything the couple had once taken for granted was upended.A story of the fragility of the mind, and the tenacity of the human spirit, My Lovely Wife in the Psych Ward is, above all, a love story that raises profound questions: How do we care for the people we love? What and who do we live for? Breathtaking in its candor, radiant with compassion, and written with dazzling lyricism, Lukach’s is an intensely personal odyssey through the harrowing years of his wife’s mental illness, anchored by an abiding devotion to family that will affirm readers’ faith in the power of love.

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 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.