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

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.

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.

My Last Step Backward


Tasha Schuh - 2012
    No one knew that the stage itself would steal her dream-and almost her life-during a rehearsal for the next big show.Just days before her opening night performance in The Wizard of Oz, sixteen-year- old Tasha took one step backward and fell sixteen feet through a trap door. On that day, Nov. 11, 1997, she landed on the concrete floor of the historic Sheldon Theater, breaking her neck, crushing her spinal cord, and fracturing her skull. She would never walk again.For the next three days, Tasha prepared for a surgery that would at best leave her a C-5 quadriplegic. Post-op complications turned Tasha's struggle and ultimate triumph into an unbelievable journey. From loss and grief to self-discovery and achievement, Tasha's faith, resilience, and honesty have allowed her to leave the old Tasha behind while she confronts the new Tasha's life from a state of the art wheelchair.Discover Tasha's remarkable spirit in My Last Step Backward, a poignant memoir that seeks to inspire you to welcome adversity and face your own trap door of opportunity.

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.

The Remedy: Queer and Trans Voices on Health and Health Care


Zena Sharman - 2016
    This anthology is a diverse collection of real-life stories from queer and trans people on their own health-care experiences and challenges, from gay men living with HIV who remember the systemic resistance to their health-care needs, to a lesbian couple dealing with the experience of cancer, to young trans people who struggle to find health-care providers who treat them with dignity and respect. The book also includes essays by health-care providers, activists and leaders with something to say about the challenges, politics, and opportunities surrounding LGBTQ health issues.Both exceptionally moving and an incendiary call-to-arms, The Remedy is a must-read for anyone--gay, straight, trans, and otherwise--passionately concerned about the right to proper health care for all.Contributors include Amber Dawn, Sinclair Sexsmith, Francisco Ibanez-Carrasco, Cooper Lee Bombardier, Kara Sievewright, and Kelli Dunham.Zena Sharman is a passionate advocate for queer and trans health. She has over a decade's experience in health research; currently she is Director of Strategy at the Michael Smith Foundation for Health Research. Zena is also co-editor of Persistence: All Ways Butch and Femme. She lives in Vancouver, British Columbia.

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.

About Us: Essays from the Disability Series of the New York Times


Peter Catapano - 2019
    Speaking not only to those with disabilities, but also to their families, coworkers and support networks, the authors in About Us offer intimate stories of how they navigate a world not built for them.Since its 2016 debut, the popular New York Times’ “Disability” column has transformed the national dialogue around disability. Now, echoing the refrain of the disability rights movement, “Nothing about us without us,” this landmark collection gathers the most powerful essays from the series that speak to the fullness of human experience—stories about first romance, childhood shame and isolation, segregation, professional ambition, child-bearing and parenting, aging and beyond.Reflecting on the fraught conversations around disability—from the friend who says “I don’t think of you as disabled,” to the father who scolds his child with attention differences, “Stop it stop it stop it what is wrong with you?”—the stories here reveal the range of responses, and the variety of consequences, to being labeled as “disabled” by the broader public.Here, a writer recounts her path through medical school as a wheelchair user—forging a unique bridge between patients with disabilities and their physicians. An acclaimed artist with spina bifida discusses her art practice as one that invites us to “stretch ourselves toward a world where all bodies are exquisite.” With these notes of triumph, these stories also offer honest portrayals of frustration over access to medical care, the burden of social stigma and the nearly constant need to self-advocate in the public realm.In its final sections, About Us turns to the questions of love, family and joy to show how it is possible to revel in life as a person with disabilities. Subverting the pervasive belief that disability results in relentless suffering and isolation, a quadriplegic writer reveals how she rediscovered intimacy without touch, and a mother with a chronic illness shares what her condition has taught her young children.With a foreword by Andrew Solomon and introductory comments by co-editors Peter Catapano and Rosemarie Garland-Thomson, About Us is a landmark publication of the disability movement for readers of all backgrounds, forms and abilities.Topics Include: Becoming Disabled • Mental Illness is not a Horror Show • Disability and the Right to Choose • Brain Injury and the Civil Right We Don’t Think • The Deaf Body in Public Space • The Everyday Anxiety of the Stutterer • I Use a Wheelchair. And Yes, I’m Your Doctor • A Symbol for “Nobody” That’s Really for Everybody • Flying While Blind • My $1,000 Anxiety Attack • A Girlfriend of My Own • The Three-Legged Dog Who Carried Me • Passing My Disability On to My Children • I Have Diabetes. Am I to Blame? • Learning to Sing Again • A Disabled Life is a Life Worth Living

Picture Perfect?


Kordale Lewis - 2014
    With inspiring candor, Kordale Lewis describes his struggles with childhood sexual abuse, a drug-addicted mother, suicide, the trials of teen fatherhood, and much more. His story provides a bold challenge for readers to redefine their own meaning of a perfect family.

Just Breathe Normally


Peggy Shumaker - 2007
    Shattered perceptions and shards of narrative recount the events, from wreck through recovery and beyond. In lyric prose, the stories spiral back through generations to touch on questions of mortality and family, immigration and migration, legacies intended or inflicted. In the wake of her near-fatal cycling collision, Peggy Shumaker searches for meaning within extremity. Through a long convalescence, she reevaluates her family’s past, treating us to a meditation on the meaning of justice and the role of love in the grueling process of healing. Her book, a moving memoir of childhood and family, testifies to the power of collective empathy in the transformations that make and remake us throughout our lives. We all live with injury and loss. This book transforms injury, transforms loss. Shumaker crafts language unlike anyone else, language at once poetic and profound. Her memoir enacts our human desire to understand the fragmented self. We see in practice the power of words to restore what medical science cannot: the fragile human psyche and its immense capacity for forgiveness.

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.

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.

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.

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

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.