Nurses On The Inside: Stories Of The HIV/AIDS Epidemic In NYC


Ellen Matzer - 2019
    It is the story of two nurses who witnessed the early years of the HIV/AIDS epidemic from the frontline. It focuses on their lives and their experiences. Some of the story is raw, sometimes graphic, but familiar for people with HIV infection, family members, friends, and other nurses and medical professionals such as Ellen and Valery. There were hundreds of nurses who went through what Ellen and Valery experienced. They want to tell this story to give a voice to a generation lost, encouraging the world to remember one simple thing: this history cannot be repeated.

How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS


David France - 2013
     A riveting, powerful telling of the story of the grassroots movement of activists, many of them in a life-or-death struggle, who seized upon scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease. Ignored by public officials, religious leaders, and the nation at large, and confronted with shame and hatred, this small group of men and women chose to fight for their right to live by educating themselves and demanding to become full partners in the race for effective treatments. Around the globe, 16 million people are alive today thanks to their efforts. Not since the publication of Randy Shilts's classic And the Band Played On has a book measured the AIDS plague in such brutally human, intimate, and soaring terms. In dramatic fashion, we witness the founding of ACT UP and TAG (Treatment Action Group), and the rise of an underground drug market in opposition to the prohibitively expensive (and sometimes toxic) AZT. We watch as these activists learn to become their own researchers, lobbyists, drug smugglers, and clinicians, establishing their own newspapers, research journals, and laboratories, and as they go on to force reform in the nation s disease-fighting agencies. With his unparalleled access to this community David France illuminates the lives of extraordinary characters, including the closeted Wall Street trader-turned-activist, the high school dropout who found purpose battling pharmaceutical giants in New York, the South African physician who helped establish the first officially recognized buyers club at the height of the epidemic, and the public relations executive fighting to save his own life for the sake of his young daughter. Expansive yet richly detailed, this is an insider's account of a pivotal moment in the history of American civil rights. Powerful, heart-wrenching, and finally exhilarating, How to Survive a Plague is destined to become an essential part of the literature of AIDS.

Taking Turns: Stories from HIV/AIDS Care Unit 371


M.K. Czerwiec - 2017
    Taking Turns pulls back the curtain on life in the ward.A shining example of excellence in the treatment and care of patients, Unit 371 was a community for thousands of patients and families affected by HIV and AIDS and the people who cared for them. This graphic novel combines Czerwiec’s memories with the oral histories of patients, family members, and staff. It depicts life and death in the ward, the ways the unit affected and informed those who passed through it, and how many look back on their time there today. Czerwiec joined Unit 371 at a pivotal time in the history of AIDS: deaths from the syndrome in the Midwest peaked in 1995 and then dropped drastically in the following years, with the release of antiretroviral protease inhibitors. This positive turn of events led to a decline in patient populations and, ultimately, to the closure of Unit 371. Czerwiec’s restrained, inviting drawing style and carefully considered narrative examine individual, institutional, and community responses to the AIDS epidemic—as well as the role that art can play in the grieving process.Deeply personal yet made up of many voices, this history of daily life in a unique AIDS care unit is an open, honest look at suffering, grief, and hope among a community of medical professionals and patients at the heart of the epidemic.

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.

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 Poetry of Healing: A Doctor's Education in Empathy, Identity, and Desire


Rafael Campo - 1997
    This work aims to bridge the clinical distance of medicine to face the pain of mortality, the brokenness of society and the vulnerability of human beings.

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

Body Counts: A Memoir of Politics, Sex, AIDS, and Survival


Sean Strub - 2014
    He also harbored a terrifying secret: his attraction to men. As Strub explored the capital’s political and social circles, he discovered a parallel world where powerful men lived double lives shrouded in shame. When the AIDS epidemic hit in the early 1980s, Strub was living in New York and soon found himself attending “more funerals than birthday parties.” Scared and angry, he turned to radical activism to combat discrimination and demand research. Strub takes you through his own diagnosis and inside ACT UP, the organization that transformed a stigmatized cause into one of the defining political movements of our time. From the New York of Studio 54 and Andy Warhol’s Factory to the intersection of politics and burgeoning LGBT and AIDS movements, Strub’s story crackles with history. He recounts his role in shocking AIDS demonstrations at St. Patrick’s Cathedral as well as at the home of US Sen­ator Jesse Helms. With an astonishing cast of characters, including Tennessee Williams, Gore Vidal, Keith Haring, Bill Clinton, and Yoko Ono, this is a vivid portrait of a tumultuous era: “A page-turner…[with] the suspense and horror of Paul Monette’s memoir Borrowed Time and the drama of Larry Kramer’s play The Normal Heart….What a lot of action—and life—there is in this gripping book” (The Washington Post).

And the Band Played On: Politics, People, and the AIDS Epidemic


Randy Shilts - 1987
    America faced a troubling question: What happened? How was this epidemic allowed to spread so far before it was taken seriously? In answering these questions, Shilts weaves the disparate threads into a coherent story, pinning down every evasion and contradiction at the highest levels of the medical, political, and media establishments. Shilts shows that the epidemic spread wildly because the federal government put budget ahead of the nation's welfare; health authorities placed political expediency before the public health; and scientists were often more concerned with international prestige than saving lives. Against this backdrop, Shilts tells the heroic stories of individuals in science and politics, public health and the gay community, who struggled to alert the nation to the enormity of the danger it faced. And the Band Played On is both a tribute to these heroic people and a stinging indictment of the institutions that failed the nation so badly.

Let the Record Show: A Political History of ACT UP New York, 1987-1993


Sarah Schulman - 2021
    --Alexander Chee Twenty years in the making, Sarah Schulman's Let the Record Show is the most comprehensive political history ever assembled of ACT UP and American AIDS activism In just six years, ACT UP, New York, a broad and unlikely coalition of activists from all races, genders, sexualities, and backgrounds, changed the world. Armed with rancor, desperation, intelligence, and creativity, it took on the AIDS crisis with an indefatigable, ingenious, and multifaceted attack on the corporations, institutions, governments, and individuals who stood in the way of AIDS treatment for all. They stormed the FDA and NIH in Washington, DC, and started needle exchange programs in New York; they took over Grand Central Terminal and fought to change the legal definition of AIDS to include women; they transformed the American insurance industry, weaponized art and advertising to push their agenda, and battled--and beat--The New York Times, the Catholic Church, and the pharmaceutical industry. Their activism, in its complex and intersectional power, transformed the lives of people with AIDS and the bigoted society that had abandoned them.Based on more than two hundred interviews with ACT UP members and rich with lessons for today's activists, Let the Record Show is a revelatory exploration--and long-overdue reassessment--of the coalition's inner workings, conflicts, achievements, and ultimate fracture. Schulman, one of the most revered queer writers and thinkers of her generation, explores the how and the why, examining, with her characteristic rigor and bite, how a group of desperate outcasts changed America forever, and in the process created a livable future for generations of people across the world.

All the Young Men


Ruth Coker Burks - 2020
    She witnesses nurses drawing straws to see who would tend to the patient inside, all of them reluctant to enter the room. Out of impulse, Ruth herself enters the quarantined space and immediately begins to care for the young man who cries for his mother in the last moments of his life. Before she can even process what she's done, word spreads in the community that Ruth is the only person willing to help these young men afflicted by AIDS, and is called upon to nurse them. As she forges deep friendships with the men she helps, she works tirelessly to find them housing and jobs, even searching for funeral homes willing to take their bodies - often in the middle of the night. She cooks meals for tens of people out of discarded food found in the dumpsters behind supermarkets, stores rare medications for her most urgent patients, teaches sex-ed to drag queens after hours at secret bars, and becomes a beacon of hope to an otherwise spurned group of ailing gay men on the fringes of a deeply conservative state.Throughout the years, Ruth defies local pastors and nurses to help the men she cares for: Paul and Billy, Angel, Chip, Todd and Luke. Emboldened by the weight of their collective pain, she fervently advocates for their safety and visibility, ultimately advising Governor Bill Clinton on the national HIV-AIDS crisis.This deeply moving and elegiac memoir honors the extraordinary life of Ruth Coker Burks and the beloved men who fought valiantly for their lives with AIDS during a most hostile and misinformed time in America.

Somebody to Love: The Life, Death and Legacy of Freddie Mercury


Matt Richards - 2016
    Including interviews from Freddie Mercury's closest friends in the last years of his life, along with personal photographs, Somebody to Love is an authoritative biography of the great man.Here are previously unknown and startling facts about the singer and his life, moving detail on his lifelong search for love and personal fulfilment, and of course his tragic contraction of a then killer disease in the mid-1980s. Woven throughout Freddie's life is the shocking story of how the HIV virus came to hold the world in its grip, was cruelly labelled 'The Gay Plague' and the unwitting few who indirectly infected thousands of men, women and children - Freddie Mercury himself being one of the most famous. The death of this vibrant and spectacularly talented rock star, shook the world of medicine as well as the world of music. Somebody to Love finally puts the record straight and pays detailed tribute to the man himself.

Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance


Ady Barkan - 2019
    But one day, he noticed a troubling weakness in his hand. At first, he brushed it off as carpal tunnel syndrome, but after a week of neurological exams and two MRIs, he learned the cause of the problem: amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. At age thirty-two, Ady was given just three to four years to live. Yet despite the devastating diagnosis, he refused to let his remaining days go to waste. Eyes to the Wind is a rousing memoir featuring intertwining storylines about determination, perseverance, and how to live a life filled with purpose and intention. The first traces Ady’s battle with ALS: how he turned the initial shock and panic from his diagnosis into a renewed commitment to social justice—not despite his disability but because of it. The second, told in flashbacks, illustrates Ady’s journey from a goofy political nerd to a prominent figure in the enduring fight for equity and justice whose “selfless activism fighting to make health care a right should be an inspiration to us all” (Senator Bernie Sanders). From one of today’s most vocal advocates for social justice, Eyes to the Wind’s “primary question is existential: how to live when you are dying? Barkan’s answer is to share, open up, act, and capital-R Resist, and his memoir, clearly and candidly written, establishes a legacy” (Booklist).

Far from the Tree: Parents, Children, and the Search for Identity


Andrew Solomon - 2012
    He writes about families coping with deafness, dwarfism, Down's syndrome, autism, schizophrenia, or multiple severe disabilities; with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, and Solomon documents triumphs of love over prejudice in every chapter.All parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. Drawing on ten years of research and interviews with more than three hundred families, Solomon mines the eloquence of ordinary people facing extreme challenges.Elegantly reported by a spectacularly original and compassionate thinker, Far from the Tree explores how people who love each other must struggle to accept each other—a theme in every family’s life.

The Loony-Bin Trip


Kate Millett - 1990
    A personal story of Kate Millett's struggle to regain control of her life after falling under an ascription of manic depression.