Wisenberg may have lost a breast, but she retained her humor, outrage, and skepticism toward common wisdom and most institutions. While following the prescribed protocols at the place she called Fancy Hospital, Wisenberg is unsparing in her descriptions of the fumblings of new doctors, her own awkward announcement to her students, and the mounds of unrecyclable plastic left at a survivors’ walk. Combining the personal with the political, she shares her research on the money spent on pink ribbons instead of preventing pollution, and the disparity in medical care between the insured and the uninsured. When chemotherapy made her bald, she decorated her head with henna swirls in front and an antiwar protest in back. During treatment, she also recorded the dailiness of life in Chicago as she rode the L, taught while one-breasted, and attended High Holiday services and a Passover seder.

Wisenberg’s writing has been compared to a mix of Leon Wieseltier and Fran Lebowitz, and in this book, she has Wieseltier’s erudition and Lebowitz’s self-deprecating cleverness: “If anybody ever offers you the choice between suffering and depression, take the suffering. And I don't mean physical suffering. I mean emotional suffering. I am hereby endorsing psychic suffering over depression.”

From The Adventures of Cancer Bitch:

I found that when you invite people to a pre-mastectomy party, they show up. Even those with small children. The kids were so young that they didn't notice that most of the food had nipples. . . . I talked to everyone—about what I'm not sure. Probably about my surgery. Everyone told me how well I looked. I felt giddy. I was going to go under, but not yet; I was going to be cut, but not yet; I was going to be bald, but not yet. As my friend who had bladder cancer says: The thing about cancer is you feel great until they start treating you for it.

A Choice Significant University Press Titles for Undergraduates, 2005–2006 

This history of the African AIDS epidemic is a much-needed, accessibly written historical account of the most serious epidemiological catastrophe of modern times. The African AIDS Epidemic: A History answers President Thabo Mbeki’s provocative question as to why Africa has suffered this terrible epidemic.

While Mbeki attributed the causes to poverty and exploitation, others have looked to distinctive sexual systems practiced in African cultures and communities. John Iliffe stresses historical sequence. He argues that Africa has had the worst epidemic because the disease was established in the general population before anyone knew the disease existed. HIV evolved with extraordinary speed and complexity, and because that evolution took place under the eyes of modern medical research scientists, Iliffe has been able to write a history of the virus itself that is probably unique among accounts of human epidemic diseases. In giving the African experience a historical shape, Iliffe has written one of the most important books of our time.

The African experience of AIDS has taught the world much of what it knows about HIV/AIDS, and this fascinating book brings into focus many aspects of the epidemic in the longer context of massive demographic growth, urbanization, and social change in Africa during the latter half of the twentieth century. The African AIDS Epidemic: A History is a brilliant introduction to the many aspects of the epidemic and the distinctive character of the virus.

The confusion, losses, and devastation of Alzheimer's disease are familiar to the millions of Americans suffering from the disease and to their family members. Understandably, declining abilities and changing personal characteristics shape our picture of the disease, leading some to refer to the "double death" of Alzheimer's in which the sufferer drifts away long before his or her eventual physical end.

This small, tender volume of 85 photographs and accompanying discussion powerfully shows the limitations of this view. Cathy Stein Greenblat, an internationally respected sociologist and photographer, demonstrates in Alive with Alzheimer's that, while the ravages of the disease are real, Alzheimer's sufferers can do more than survive, they can thrive. Her images, interviews, and observations attest to the possibility of their being "alive" with Alzheimer's far beyond the expectations of the general public and even of many physicians with long experience with the disease.

Greenblat offers a new vision, taking us into a world of life-enhancing institutional care. Nursing homes and similar facilities don't have to be a last resort; as Greenblat shows, with a dedicated and experienced staff and an enriched environment (that includes respect, choices, pets, and music), extraordinary changes can be effected in Alzheimer's patients. Alive with Alzheimer's, the first photographic book on the disease, offers hope and inspiration. Moreover, its vivid, impressive evidence that ongoing stimulation in a good institutional setting can sustain Alzheimer's patients at a far higher level than is generally believed has significant implications for personal and policy decisions.

The new standard of care chronicled in Alive with Alzheimer's will provide hope and inspiration to those touched by the disease. As Dr. Enid Rockwell writes in her Afterword to Greenblat's moving book, "These photographs are extraordinary for practitioners, for family members, for everyone to see what's going on with these people. The stimulation pictured in this book is more powerful than any medication that we will have in our lifetime. . . . They so vividly show us that there are people inside these bodies, people with personalities, who experience emotion, and they show that there is life after Alzheimer's."

In one case after another, Charles L. Bosk reveals the process by which parents, physicians and other health professionals come to guide decisions about pregnancies. A story of both extraordinary drama and ordinary routine, this is a pioneering case study of authority and control in a pediatric hospital, showing how genetic counselors work with colleagues and with parents to be, and how they deal with their powerlessness to control life-and-death decisions that they must address.

“Visceral.”—Wall Street Journal     “Illuminating.”—Publishers Weekly     “Heroic.”—Science

The immune system holds the key to human health. In The Beautiful Cure, leading immunologist Daniel M. Davis describes how the scientific quest to understand how the immune system works—and how it is affected by stress, sleep, age, and our state of mind—is now unlocking a revolutionary new approach to medicine and well-being.

The body’s ability to fight disease and heal itself is one of the great mysteries and marvels of nature. But in recent years, painstaking research has resulted in major advances in our grasp of this breathtakingly beautiful inner world: a vast and intricate network of specialist cells, regulatory proteins, and dedicated genes that are continually protecting our bodies. Far more powerful than any medicine ever invented, the immune system plays a crucial role in our daily lives. We have found ways to harness these natural defenses to create breakthrough drugs and so-called immunotherapies that help us fight cancer, diabetes, arthritis, and many age-related diseases, and we are starting to understand whether activities such as mindfulness might play a role in enhancing our physical resilience.

Written by a researcher at the forefront of this adventure, The Beautiful Cure tells a dramatic story of scientific detective work and discovery, of puzzles solved and mysteries that linger, of lives sacrificed and saved. With expertise and eloquence, Davis introduces us to this revelatory new understanding of the human body and what it takes to be healthy.

“Illness, in the larger sense of mortality,” Don Hardy writes, “is an inescapable shared trait among all living creatures, and we humans know about it, whether or not we want to talk about it.”

Because I’d Hate to Just Disappear is a portrait of a husband and wife, Don and Heather Hardy, thrown into the physical and emotional machinery of Don being diagnosed with leukemia and going through chemotherapy and treatment over a period of close to two years.

In this thoughtful and exquisite account, Don and Heather narrate Don’s struggle in real-time. Disarmingly honest, they recount each intimate stage of a couple living through cancer together, the mental and physical struggles, the humor and visceral emotion to reveal how two very different personalities shape—and are shaped by—the experience of cancer and its treatment. Through these moments emerge a constant flow of human kindness and discovery that lifts them each day.

Rooted in the ways Black women understand their lives, this collection archives practices of healing, mothering, and advocacy during the COVID-19 pandemic.

Recognizing that Black women have been living in pandemics as far back as colonialism and enslavement, this volume acknowledges that records of the past—from the 1918 flu pandemic to the onset of the HIV/AIDS epidemic—often erase the existence and experiences of Black women as a whole. Writing against this archival erasure, this collection consciously recenters the real-time experiences and perspectives of care, policy concerns, grief, and joy of Black women throughout the COVID-19 pandemic.

Nineteen contributors from interdisciplinary fields and diverse backgrounds explore Black feminine community, consciousness, ethics of care, spirituality, and social critique. They situate Black women’s multidimensional experiences with COVID-19 and other violences that affect their lives. The stories they tell are connected and interwoven, bound together by anti-Black gendered COVID necropolitics and commitments to creating new spaces for breathing, healing, and wellness.

Ultimately, this time-warping analysis shows how Black women imagine a more just society, rapidly adapt to changing experiences, and innovate ethics of care even in the midst of physical distancing, which can be instructive for thinking of new ways of living both during and beyond the era of COVID-19.

Contributors
Shamara Wyllie Alhassan
Sharnnia Artis
Keisha L. Bentley-Edwards
Candace S. Brown
Jenny Douglas
Kaja Dunn
Onisha Etkins
Rhonda M. Gonzales
Endia Hayes
Ashley E. Hollingshead
Kendra Jason
Julia S. Jordan-Zachery
Stacie LeSure
Janaka B. Lewis
Michelle Meggs
Nitya Mehrotra
Sherine Andreine Powerful
Marjorie Shavers
Breauna Marie Spencer
Tehia Starker Glass
Amber Walker

A coming-of-age memoir for modern times, Bleeder is the incredibly compelling tale of author Shelby Smoak. A hemophiliac, Smoak discovered he had been infected with HIV during a blood transfusion at the start of his college career. This devastating and destabilizing news led Smoak to see his world from an entirely new perspective, one in which life-threatening illness was perpetually just around the corner. Set in the 1990s along the North Carolina coast, Bleeder traces Smoak’s quest for love in a world that feels increasingly dangerous, and despite a future that feels increasingly uncertain. From the bedroom to the operating room, and from one hospital to the next, Smoak seeks out hope and better health. Winner of a PEN American Center award for writers living with HIV, Smoak, whose work has appeared in numerous journals and magazines, constructs this unforgettable story of life and love against insurmountable difficulties in breathtaking, tightly drawn prose.

Last year, more African Americans were reported with AIDS than any other racial or ethnic group. And while African Americans make up only 13 percent of the U.S. population, they account for more than 55 percent of all newly diagnosed HIV infections. These alarming developments have caused reactions ranging from profound grief to extreme anger in African-American communities, yet the organized political reaction has remained remarkably restrained.

The Boundaries of Blackness is the first full-scale exploration of the social, political, and cultural impact of AIDS on the African-American community. Informed by interviews with activists, ministers, public officials, and people with AIDS, Cathy Cohen unflinchingly brings to light how the epidemic fractured, rather than united, the black community. She traces how the disease separated blacks along different fault lines and analyzes the ensuing struggles and debates.

More broadly, Cohen analyzes how other cross-cutting issues—of class, gender, and sexuality—challenge accepted ideas of who belongs in the community. Such issues, she predicts, will increasingly occupy the political agendas of black organizations and institutions and can lead to either greater inclusiveness or further divisiveness.

The Boundaries of Blackness, by examining the response of a changing community to an issue laced with stigma, has much to teach us about oppression, resistance, and marginalization. It also offers valuable insight into how the politics of the African-American community—and other marginal groups—will evolve in the twenty-first century.

At age 42, Barbara L. Gordon was diagnosed with Stage II breast cancer. Two years later, it appeared that the cancer had metastasized. Along with her oncologist and other experts, Gordon has written the book that she wished she had as she faced late-stage breast cancer and the prospect of dying from the disease. Filled with information and advice, and designed to enable informed decisions and improved quality of life, this comprehensive guide gathers in one place authoritative medical information about recurrence and late-stage breast cancer, and it addresses the practical, emotional, spiritual, and interpersonal aspects of dying and death.

This indispensable book aids those diagnosed with recurrent or late-stage breast cancer, those wanting to reduce the chance of a recurrence, and those with other types of late-stage cancer. It is also a valuable resource for healthcare professionals, friends, and family members.

Topics covered include

• Types of recurrence, their symptoms, and ways of minimizing the chance of a recurrence
• Diagnostic tests, potential surgeries, and treatments to manage late-stage cancer
• Getting the best care, evaluating complementary therapies, and alleviating pain and depression
• Cessation of treatment and what one may experience as the disease progresses
• End-of-life issues including dealing with financial and legal matters, communicating with loved ones and hospice workers, and planning memorial services

Breast Cancer Recurrence and Advanced Disease includes a glossary of medical terms, appendices on nutrition and integrative health centers, and links to current Web sites addressing matters such as clinical trials, patients’ rights, and medical expenses.

The first comparison of the breast cancer and the prostate cancer movements

Cancer Activism explores the interplay between advocacy, the media, and public perception through an analysis of breast cancer and prostate cancer activist groups over a nearly twenty-year period. Despite both diseases having nearly identical mortality and morbidity rates, Karen M. Kedrowski and Marilyn Stine Sarow present evidence from more than 4,200 news articles to show that the different groups have had markedly different impacts. They trace the rise of each movement from its beginning and explore how discussions about the diseases appeared on media, public, and government agendas. In an important exception to the feminist tenet that women as a group hold less power than men, Kedrowski and Sarow demonstrate that the breast cancer movement is not only larger and better organized than the prostate cancer movement, it is also far more successful at shaping media coverage, public opinion, and government policy.

AIDS is now the leading cause of death in Africa, where twenty-eight million people are HIV-positive, and where some twelve million children have lost one or both parents to AIDS. In Zimbabwe, 45 percent of children under the age of five are HIV-positive, and the epidemic has shortened life expectancy by twenty-two years. A fifteen-year-old in Botswana or South Africa has a one-in-two chance of dying of AIDS. AIDS deaths are so widespread in sub-Saharan Africa that small children now play a new game called “Funerals.” The Children of Africa Confront AIDS depicts the reality of how African children deal with the AIDS epidemic, and how the discourse of their vulnerability affects acts of coping and courage. A project of the Institute for the African Child at Ohio University, The Children of Africa Confront AIDS cuts across disciplines and issues to focus on the world’s most marginalized population group, the children of Africa. Editors Arvind Singhal and Stephen Howard join conversations between humanitarian and political activists and academics, asking, “What shall we do?” Such discourse occurs in African contexts ranging from a social science classroom in Botswana to youth groups in Kenya and Ghana. The authors describe HIV/AIDS in its macro contexts of vulnerable children and the continent’s democratization movements and also in its national contexts of civil conflict, rural poverty, youth organizations, and agencies working on the ground. Singhal, Howard, and other contributors draw on compelling personal experience in descriptions of HIV/AIDS interventions for children in difficult circumstances and present thoughtful insights into data gathered from surveys and observations concerning this terrible epidemic.

Each day Burt Wheeler is plagued by the same question. When did it happen? If he could pinpoint the beginning, then he might begin to make peace with himself. He vividly remembers when the doctor diagnosed Kee, his loving wife of over fifty years, with "Alzheimer-type dementia." But, as hard as he tries, it's impossible for him to determine when his wife's dementia started. He remembers her bout with depression, but that, he thinks, was surely due to her breast cancer. There was their dream vacation to Greece when Kee seemed so tired and indifferent. There were the unopened books, when reading had always been such a source of pleasure to her. And, he recalls, the gradual personality changes with friends, and even with family.

Wheeler started writing this book as a form of self-therapy when he found himself thrust into the role of caretaker to his wife--a role for which he felt unprepared. He wrote in memory of the very special woman his wife had been—a wonderful mother, charming and gracious, as well as a deeply respected psychotherapist. She was also his best friend, and he loved her. So, to some degree, this is a love story—a story about two people who have shared life's ups and downs for over fifty years. It's also about commitment.

In Close to Me, but Far Away, Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humor, humor achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

Alzheimer's is a terrifying and horrible disease, as much for loved ones as for the patient. Those who are caregivers or friends of Alzheimer's patients or caregivers will empathize with Burton Wheeler's story. And some might receive comfort from his words or learn from him. Because Alzheimer's is a disease that could affect anyone, Close to Me, but Far Away is a story that should be read by all.

How do women living with genital herpes and/or HPV (human papilloma virus) infections see themselves as sexual beings, and what choices do they make about sexual health issues? Adina Nack, a medical sociologist who specializes in sexual health and social psychology, conducted in-depth interviews with 43 women about their identities and sexuality in regards to chronic illness. The result is a fascinating book about an issue that affects over 15 million Americans, but is all too little discussed.

Damaged Goods adds to our knowledge of how women are affected by living with chronic STDs and reveals the stages of their sexual- self transformation. From the anxiety of being diagnosed with an STD to issues of blame and shame, Nack-herself diagnosed with a cervical HPV infection-shows why these women feeling that they are "damaged goods," question future relationships, marriage, and their ability to have healthy children.

This book explores the experience and value of dancing for people living with the neurodegenerative disorder Parkinson’s disease. Linking aesthetic values to wellbeing, Sara Houston articulates the importance of the dancing experience for those with Parkinson’s, and argues that the benefits of participatory dance are best understood through the experiences, lives, needs, and challenges of people living with Parkinson’s who have chosen to dance.

Presenting personal narratives from a study that investigates the experience of people with Parkinson’s who dance, intertwined with the social and political contexts in which the dancers live, this volume examines the personal and systemic issues as well as the attitudes and identities that shape people’s relationship to dance. Taking this new primary research as a starting point, Dancing with Parkinson’s builds an argument for how dance becomes a way of helping people live well with Parkinson’s.

From the 1940s to the 1970s, millions of women were exposed prenatally to the synthetic estrogen DES, a “wonder drug” intended to prevent miscarriages. However, DES actually had damaging consequences for the women born from DES mothers. The “DES daughters” as they are known, were found to have a rare form of vaginal cancer or were infertile. They were also at risk for miscarriages, stillbirths, and ectopic pregnancies.

In DES Daughters, Susan Bell recounts the experiences of this generation of “victims.” In moving, heartfelt narratives, she presents the voices of those women who developed cancer, those who were cancer-free but have concerns about becoming pregnant, and those who suffered other medical and/or reproductive difficulties.

Bell examines the hierarchy of knowledge and power of scientists, doctors, and daughters, tracing the emergence of a feminist health movement. The “embodied knowledge” of these DES daughters prompted them to become advocates and form a social movement that challenged reproductive medical knowledge specifically, but also the politics of women’s health in general. Bell’s important book chronicles the history and future of these grassroots activists born out of illness, suffering, and uncertainty.

In a brilliant, definitive history of one of the most significant and controversial medical events of modern times, award-winning historian Michael Bliss brings to light a bizarre clash of scientific personalities. When F. G. Banting and J. J. R. Macleod won the 1923 Nobel Prize for discovering and isolating insulin, Banting immediately announced that he was dividing his share of the prize with his young associate, C. H. Best. Macleod divided his share with a fourth member of the team, J. B. Collip. For the next sixty years medical opinion was intensely divided over the allotment of credit for the discovery of insulin. In resolving this controversy, Bliss also offers a wealth of new detail on such subjects as the treatment of diabetes before insulin and the life-and-death struggle to manufacture insulin.

In a brilliant, definitive history of one of the most significant and controversial medical events of modern times, award-winning historian Michael Bliss brings to light a bizarre clash of scientific personalities. When F. G. Banting and J. J. R. Macleod won the 1923 Nobel Prize for discovering and isolating insulin, Banting immediately announced that he was dividing his share of the prize with his young associate, C. H. Best. Macleod divided his share with a fourth member of the team, J. B. Collip. For the next sixty years medical opinion was intensely divided over the allotment of credit for the discovery of insulin. In resolving this controversy, Bliss also offers a wealth of new detail on such subjects as the treatment of diabetes before insulin and the life-and-death struggle to manufacture insulin.

Alzheimer’s disease is a growing public health crisis. According to the Alzheimer’s Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people—the Alzheimer’s family—undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer’s patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer’s family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.

The American public responded to the first cases of AIDS with fear and panic. Both policymakers and activists were concerned not only with stopping the spread of the disease, but also with guiding the public’s response toward those already infected. Fatal Advice is an examination of how the nation attempted, with mixed results, to negotiate the fears and concerns brought on by the epidemic. A leading writer on the cultural politics of AIDS, Cindy Patton guides us through the thicket of mass-media productions, policy and public health enterprises, and activist projects as they sprang up to meet the challenge of the epidemic, shaping the nation’s notion of what safe-sex is and who ought to know what about it.
There is the official story, and then there is another, involving local groups and AIDS activists. Going back to early government and activist attempts to spread information, Patton traces a slow separation between official advice and that provided by those on the front lines in the battle against AIDS. She shows how American anxieties about teen sex played into the nation’s inadequate education and protection of its young people, and chronicles the media’s attempts to encourage compassion without broaching the touchy subject of sex or disrupting the notion that AIDS was a disease of social and sexual outcasts. Her overview of the relationship between shifting medical perceptions and safe-sex advice reveals why radical safe-sex educators eventually turned to sexually explicit, including pornographic, representations to spread their message—and why even these extreme tactics could not overcome the misguided national teaching on AIDS.
Patton closes with a stirring manifesto, an urgent call to action for all those who do not want to see the hard lessons of AIDS education and activism wasted, or, with these lessons, the loss of so many more lives.

Heterosexual Africa? The History of an Idea from the Age of Exploration to the Age of AIDS builds from Marc Epprecht’s previous book, Hungochani (which focuses explicitly on same-sex desire in southern Africa), to explore the historical processes by which a singular, heterosexual identity for Africa was constructed—by anthropologists, ethnopsychologists, colonial officials, African elites, and most recently, health care workers seeking to address the HIV/AIDS pandemic. This is an eloquently written, accessible book, based on a rich and diverse range of sources, that will find enthusiastic audiences in classrooms and in the general public.

Epprecht argues that Africans, just like people all over the world, have always had a range of sexualities and sexual identities. Over the course of the last two centuries, however, African societies south of the Sahara have come to be viewed as singularly heterosexual. Epprecht carefully traces the many routes by which this singularity, this heteronormativity, became a dominant culture. In telling a fascinating story that will surely generate lively debate, Epprecht makes his project speak to a range of literatures—queer theory, the new imperial history, African social history, queer and women’s studies, and biomedical literature on the HIV/AIDS pandemic. He does this with a light enough hand that his story is not bogged down by endless references to particular debates.

Heterosexual Africa? aims to understand an enduring stereotype about Africa and Africans. It asks how Africa came to be defined as a “homosexual-free zone” during the colonial era, and how this idea not only survived the transition to independence but flourished under conditions of globalization and early panicky responses to HIV/AIDS.

This book, written from the perspective of a practicing primary care physician, interweaves patients’ stories with fascinating new brain research to show how addictive drugs overtake basic brain functions and transform them to create a chronic illness that is very difficult to treat. The idea that drug and alcohol addiction are chronic illnesses and not character flaws is not news—this notion has been around for many years. What Hijacked Brains offers is context and personal stories that demonstrate this point in a very accessible package. Dr. Barnes explores how the healthy brain works, how addictive drugs flood basic reward pathways, and what it feels like to grapple with addiction. She discusses how, for individuals, the combination of genetic and environmental factors determines both vulnerability for addiction and the resilience necessary for recovery. Finally, she shows how American culture, with its emphasis on freewill and individualism, tends to blame the addict for bad choices and personal weakness, thereby impeding political and/or health-related efforts to get the addict what she needs to recover.

This new collection of essays on HIV viruses spans disciplines to topple popular narratives about the origins of the AIDS pandemic and the impact of the disease on public health policy.

With a death toll in the tens of millions, the AIDS pandemic was one of the worst medical disasters of the past century. The disease was identified in 1981, at the height of miraculous postwar medical achievements, including effective antibiotics, breakthrough advances in heart surgery and transplantations, and cheap, safe vaccines—smallpox had been eradicated just a few years earlier. Arriving as they did during this era of confidence in modern medicine, the HIV epidemics shook the public’s faith in health science. Despite subsequent success in identifying, testing, and treating AIDS, the emergence of epidemics and outbreaks of Ebola, Zika, and the novel coronaviruses (SARS and COVID-19) are stark reminders that such confidence in modern medicine is not likely to be restored until the emergence of these viruses is better understood.

This collection combines the work of major social science and humanities scholars with that of virologists and epidemiologists to provide a broader understanding of the historical, social, and cultural circumstances that produced the pandemic. The authors argue that the emergence of the HIV viruses and their epidemic spread were not the result of a random mutation but rather broader new influences whose impact depended upon a combination of specific circumstances at different places and times. The viruses emerged and were transmitted according to population movement and urbanization, changes in sexual relations, new medical procedures, and war. In this way, the AIDS pandemic was not a chance natural occurrence, but a human-made disaster.

Essays by: Ernest M. Drucker, Tamara Giles-Vernick, Ch. Didier Gondola, Guillaume Lachenal, Amandine Lauro, Preston A. Marx, Stephanie Rupp, François Simon, Jorge Varanda

This first extensive study of the practice of blood transfusion in Africa traces the history of one of the most important therapies in modern medicine from the period of colonial rule to independence and the AIDS epidemic. The introduction of transfusion held great promise for improving health, but like most new medical practices, transfusion needed to be adapted to the needs of sub-Saharan Africa, for which there was no analogous treatment in traditional African medicine.

This otherwise beneficent medical procedure also created a “royal road” for microorganisms, and thus played a central part in the emergence of human immune viruses in epidemic form. As with more developed health care systems, blood transfusion practices in sub-Saharan Africa were incapable of detecting the emergence of HIV. As a result, given the wide use of transfusion, it became an important pathway for the initial spread of AIDS. Yet African health officials were not without means to understand and respond to the new danger, thanks to forty years of experience and a framework of appreciating long-standing health risks. The response to this risk, detailed in this book, yields important insight into the history of epidemics and HIV/AIDS.

Drawing on research from colonial-era governments, European Red Cross societies, independent African governments, and directly from health officers themselves, this book is the only historical study of the practice of blood transfusion in Africa.

Hospital Time is a memoir about friendship, family, and caregiving in the age of AIDS. Amy Hoffman, a writer, lesbian activist, and former editor of Gay Community News, chronicles with fury and unflinching honesty her experience serving as primary caretaker for her friend and colleague, Mike Riegle, who died from AIDS-related complications in 1992. Hoffman neither idealizes nor deifies Riegle, whom she portrays as a brilliant man, devoted prison rights activist, and very difficult friend.
Hoffman became central to Riegle’s caregiving when he asked her to be his health-care proxy, and although she willingly chose to do this, she explores her conflicting feelings about herself in this role and about her involvement with Riegle and his grueling struggle with hospitalization, illness, and, finally, death. She tells of the waves of grief that echoed throughout her life, awakening memories of other losses, entering her dreams and fantasies, and altering her relationships with friends, family, and even total strangers.
Hoffman’s memoir gives voice to the psychological and emotional havoc AIDS creates for those in the difficult role of caring for the terminally ill and it gives recognition to the role that lesbians continue to play in the AIDS emergency. A foreword by Urvashi Vaid, former executive director of the National Gay and Lesbian Task Force, offers a meditation on the politics of AIDS and the role of family in the lives of lesbians and gay men.

Paula A. Treichler has become a singularly important voice among the significant theorists on the AIDS crisis. Dissecting the cultural politics surrounding representations of HIV and AIDS, her work has altered the field of cultural studies by establishing medicine as a legitimate focus for cultural analysis. How to Have Theory in an Epidemic is a comprehensive collection of Treichler’s related writings, including revised and updated essays from the 1980s and 1990s that present a sustained argument about the AIDS epidemic from a uniquely knowledgeable and interdisciplinary standpoint.
“AIDS is more than an epidemic disease,” Treichler writes, “it is an epidemic of meanings.” Exploring how such meanings originate, proliferate, and take hold, her essays investigate how certain interpretations of the epidemic dominate while others are obscured. They also suggest ways to understand and choose between overlapping or competing discourses. In her coverage of roughly fifteen years of the AIDS epidemic, Treichler addresses a range of key issues, from biomedical discourse and theories of pathogenesis to the mainstream media’s depictions of the crisis in both developed and developing countries. She also examines representations of women and AIDS, treatment issues, and the role of activism in shaping the politics of the epidemic. Linking the AIDS tragedy to a uniquely broad spectrum of contemporary theory and culture, this collection concludes with an essay on the continued importance of theoretical thought for untangling the sociocultural phenomena of AIDS—and for tackling the disease itself.
With an exhaustive bibliography of critical and theoretical writings on HIV and AIDS, this long-awaited volume will be essential to all those invested in studying the course of AIDS, its devastating medical effects, and its massive impact on contemporary culture. It should become a standard text in university courses dealing with AIDS in biomedicine, sociology, anthropology, gay and lesbian studies, women’s studies, and cultural and media studies.

I Can't Remember is an intimate photo essay of four families and their process of coping with Alzheimer's disease -- a process of coming to terms with the practical and emotional consequences of a disease that changes the entire family dynamic. Family members tell their stories of first denying that their loved one cold be suffering from Alzheimer's, then dealing with the changing relationships among family members and the intensifying emotions, as old family troubles are stirred up and new feelings of despair and love appear.

Photographs and  personal narratives are woven together to show both the unpleasant and the beautiful sides of the struggle for connection between spouses and across generations. Smoller has a gift for capturing people as they interact, whether it's arguing around the kitchen table or dancing cheek to cheek.

Each family's story is different, but all four families share common pain and frustration. A highway patrolman who has early onset Alzheimer's describes what it is like to have Alzheimer's. His wife tells a parallel story of life together after hearing the diagnosis. A daughter gives the following account of her mother: "I though that it would be helpful if mother spent time in my home in Colorado. Before this visit, I was in denial, convinced that she suffered from depression and not Alzheimer's disease. ... On the plane trip to Colorado, I was brought into the stark, cold reality that Mom had Alzheimer's. She did not know where she was or where she was going. Upon arrival, she did not recognize my home, although she had visited me numerous times in the past. She tried sleeping in the bathtub the first night."

Another daughter relates that she was unaware of the onset of Alzheimer's in her mother, because her mother was such a "wonderful actress." Eventually the memory problems were no longer confined to where things belonged in the kitchen, but extended into driving off at random, driving in circles in a parking lot in the middle of the night or as much as 75 miles away from home.

I Can't Remember gives an intimate glimpse into the hearts and minds of caregivers and patients. Supportive social networks are essential for healthy life. This book provides the impetus caregivers need to develop contacts that can provide support. Smoller offers a glimpse of the frustration and losses faced by those who deal with Alzheimer's, as well as the potential to transcend those losses -- even is only for a time -- through love and hope.

While everyone knows of the Ice Bucket Challenge, the viral craze that swept the nation in summer 2014, too few know the truly inspirational story behind it. Pete Frates was a man at war with his own body. A man whose love for others was unshakable. A man who refused to fight alone, and in so doing mobilized a global army to combat one of the most devastating diseases on earth: ALS, or Lou Gehrig’s disease. When disease crippled Frates, the former Boston College baseball star turned tragedy into inspiration. Pete’s story is a testament to the power of love, the steadfastness of family, the generosity of strangers, and the compassion of crowds. Half of the authors’ proceeds will go to the Frates family.

The HIV/AIDS epidemic has been a major catastrophe for gay communities. In less than two decades, the disease has profoundly changed the lives of gay men and lesbians. Not just a biological and viral agent, HIV has become an opportunistic social invader, reshaping communities and the distribution of wealth, altering the social careers of gay professionals and the patterns of entry into gay and lesbian life, and giving birth to groups like ACT UP and Queer Nation.

The distinguished contributors to this volume discuss the ways HIV/AIDS has changed collective and individual identities, as well as lives, of gay men and lesbians, and how these alterations have changed our perceptions of the epidemic. They cover such topics as the impact of the epidemic on small towns, cultural barriers to AIDS prevention, gay youth and intergenerational relations, and the roles of lesbians in AIDS organizations. This collection provides compelling insights into the new communities among gay men and lesbians and the new kinds of identities and relationships that are emerging from the social and cultural ferment engendered by HIV/AIDS.

Contributors include Barry D. Adam, Lourdes Arguelles, Rafael Miguel Diaz, John H. Gagnon, Gilbert Herdt, Gregory M. Herek, Nan D. Hunter, Peter M. Nardi, John L. Peterson, Anne Rivero, Gayle S. Rubin, Beth E. Schneider, and Nancy E. Stoller.

What do ordinary women in an African city do in the face of “serious enough” infections in themselves and signs of acute illness in their young children? How do they manage? What does it take to get by? How do they maintain the wellbeing of the household in a setting without what would be considered as basic health provision in an American or European city?

Professor Wallman focuses on women in a densely-populated part of Kampala called Kamwokya. With the help of a team of Ugandans and non-Ugandans, a vivid picture emerges, enhanced by color photographs, sketches and maps.

Women are largely responsible for the management of illness in all members of the family. Young children are at particular risk and the women have to take the first crucial decisions about treatment. Formal health resources are scarce and so they most often resort to an extraordinary range of treatments provided in the informal economy. A holistic picture of all the options that local people recognize is drawn, and an enriched understanding of problems and opportunities for health care in tropical cities emerges.

Multidisciplinary work on sexually transmitted disease is rare, even in this time of AIDS, and the book effectively maps the social contexts of its perception and management. Moreover, it focuses on women as ordinary citizens, selected by residence and not by reference to known medical conditions or high risk behavior. It is important too that the field strategies have encouraged local informants to become active participants in the definition of local problems and their solutions.

The second, expanded edition of this acclaimed memoir by an Alzheimer’s caregiver living with his father during his final year includes a new introduction that illustrates the immense toll of the disease, important lessons from the author’s experience, and a readers' guide. Joe Thorndike was managing editor of Life at the height of its popularity immediately following World War II. He was the founder of American Heritage and Horizon magazines, the author of three books, and the editor of a dozen more. But at age ninety-two, in the space of six months he stopped reading or writing or carrying on detailed conversations. He could no longer tell time or make a phone call. He was convinced that the governor of Massachusetts had come to visit and was in the refrigerator. Over six million Americans suffer from Alzheimer’s, and like many of them, Joe Thorndike’s one great desire was to remain in his own house. To honor his wish, his son John left his own home and moved into his father’s upstairs bedroom on Cape Cod. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father and a candid portrait of an implacable disease. It’s the ordeal of Alzheimer’s that draws father and son close, closer than they have been since John was a boy. At the end, when Joe’s heart stops beating, John’s hand is on his chest, and a story of painful decline has become a portrait of deep family ties, caregiving, and love.

Diabetes, referred to as an epidemic for more than a decade, remains one of our most significant health issues in the twenty-first century. Because self-management is an important component of living with the disease, the biomedical concept of patient agency has long stressed notions of individual responsibility and autonomy. However, dramatic shifts in both health care and cultural practices call for a reassessment of traditional definitions of patient agency.

Lora Arduser’s Living Chronic: Agency and Expertise in the Rhetoric of Diabetes answers this call with a unique rhetorical examination of one of the most critical issues in contemporary health: how we live and work with being chronic. Through her perceptive analysis of the discourse of both people with diabetes and health care providers, Arduser presents a new model for patient agency—one that advocates for a relational, fluid concept of agency that blurs the boundaries between medical experts and patients. Her thought-provoking use of bodily and rhetorical plasticity crafts a multidimensional picture of patient agency that profoundly affects how rhetorical scholars, people living with chronic illness, and health care providers can forge patient-centered discourse and practices.

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Mammography is a routine health screening performed forty million times each year in the United States, yet it remains one of the most deeply contested topics in medicine, with national health care organizations supporting conflicting guidelines. In Mammography Wars, sociologist Asia Friedman examines cultural and medical disagreements over mammography. At issue is whether to screen women under age fifty, which is rooted in deeper questions about early detection and the assumed linear and progressive development of breast cancer. Based on interviews with doctors and scientists, interviews with women ages 40 to 50, and newspaper coverage of mammography, Friedman uses the sociology of attention to map the cognitive structure of the “mammography wars,” offering insights into the entrenched nature of debates over mammography that often get missed when applying a medical lens. Friedman’s analysis also suggests the sociology of attention’s unique potential for analyzing cultural conflicts beyond mammography, and even beyond medicine.
 

In 1875 Mary Lincoln, the widow of a revered president, was committed to an insane asylum by her son, Robert. The trial that preceded her internment was a subject of keen national interest. The focus of public attention since Abraham Lincoln's election in 1860, Mary Lincoln had attracted plentiful criticism and visible scorn from much of the public, who perceived her as spoiled, a spendthrift, and even too much of a Southern sympathizer. Widespread scrutiny only increased following her husband's assassination in 1865 and her son Tad's death six years later, after which her overwhelming grief led to the increasingly erratic behavior that led to her being committed to a sanitarium. A second trial a year later resulted in her release, but the stigma of insanity stuck. In the years since, questions emerged with new force, as the populace and historians debated whether she had been truly insane and subsequently cured, or if she was the victim of family maneuvering.

In this volume, noted Lincoln scholar Jason Emerson provides a documentary history of Mary Lincoln's mental illness and insanity case, evenhandedly presenting every possible primary source on the subject to enable a clearer view of the facts. Beginning with documents from the immediate aftermath of her husband's assassination and ending with reminiscences by friends and family in the mid-twentieth century, Mary Lincoln's Insanity Case: A Documentary History compiles more than one hundred letters, dozens of newspaper articles, editorials, and legal documents, and the daily patient progress reports from Bellevue Place Sanitarium during Mary Lincoln's incarceration. Including many materials that have never been previously published, Emerson also collects multiple reminiscences, interviews, and diaries of people who knew Mary Lincoln or were involved in the case, including the first-hand recollection of one of the jurors in the 1875 insanity trial.

Suggesting neither accusation nor exoneration of the embattled First Lady, Mary Lincoln's Insanity Case: A Documentary History gives scholars and history enthusiasts incomparable access to the documents and information crucial to understanding this vexing chapter in American history.

Lee Johnson was a man with simple dreams. All he wanted was a steady job and a nice home for his wife and children, something better than the hard life he knew growing up. He never imagined that he would become the face of a David-and-Goliath showdown against one of the world’s most powerful corporate giants. But a workplace accident left Lee doused in a toxic chemical and facing a deadly cancer that turned his life upside down. In 2018, the world watched as Lee was thrust to the forefront of one the most dramatic legal battles in recent history.
 
The Monsanto Papers is the inside story of Lee Johnson’s landmark lawsuit against Monsanto. For Lee, the case was a race against the clock, with doctors predicting he wouldn’t survive long enough to take the witness stand. For the eclectic band of young, ambitious lawyers representing him, it was a matter of professional pride and personal risk, with millions of dollars and hard-earned reputations on the line. For the public at large, the lawsuit presented a question of corporate accountability. With enough money and influence, could a company endanger its customers, hide evidence, manipulate regulators, and get away with it all—for decades?
 
Readers will be astounded by the depth of corruption uncovered, captivated by the shocking twists, and moved by Lee’s quiet determination to see justice served. With gripping narrative force that reads like fiction, The Monsanto Papers takes readers behind the scenes of a grueling legal battle, pulling back the curtain on the frailties of the American court system and the lengths to which lawyers will go to fight corporate wrongdoing.    
 
 

Narrative non-fiction. A novel-like collection of compelling conversations between an HIV-positive nurse and other gay men with asymptomatic HIV. This book transports the reader into an urban world where gay men negotiated their sexuality, mortality, and health care between the decades of heady liberation and AIDS. See "inside flap" below.

The Mythical Bill, a moving and unusual book, is for people who suffer the devastating effects of combat on the psyche, for those who encounter any debilitating disease, and for those who grow up with a father only partially present. McAuliffe’s ear-catching, evocative, and often breathtaking writing forces readers to confront the most terrifying question posed by a parent’s mental illness: will I get it too? Her narrative voice is searching, compassionate, and self-deprecating, but cut through with welcome bits of humor in this daughter’s story of confusion, sadness, and loss. 

For more than fifty years, we have been waging, but not winning, the war on cancer. We’re better than ever at treating the disease, yet cancer still claims the lives of one in five men and one in six women in the US. The astonishing news is that up to two-thirds of all cancer cases are linked to preventable environmental causes. If we can stop cancer before it begins, why don’t we?

That was the question that motivated Kristina Marusic’s revelatory inquiry into cancer prevention. In searching for answers, she met remarkable doctors, scientists, and advocates who are upending our understanding of cancer and how to fight it. They recognize that we will never reduce cancer rates without ridding our lives of the chemicals that increasingly trigger this deadly disease.

Most never imagined this role for themselves. One scientist grew up without seeing examples of Indian-American women in the field, yet went on to make shocking discoveries about racial disparities in cancer risk. Another leader knew her calling was children’s health, but realized only later in her career that kids can be harmed by invisible pollutants at their daycares. Others uncovered surprising links between cancer and the everyday items that fill our homes and offices.

For these individuals, the fight has become personal. And it certainly is personal for Berry, a young woman whose battle with breast cancer is woven throughout these pages. Might Berry have dodged cancer had she not grown up in Oil City, Pennsylvania, in the shadow of refineries? There is no way to know for sure. But she is certain that, even with the best treatment available, her life was changed irrevocably by her diagnosis. Marusic shows that, collectively, we have the power to prevent many cases like Berry’s. The war on cancer is winnable—if we revolutionize the way we fight.

A frightening new plague. A medical mystery. A pioneering immunologist. In A Plague on All Our Houses, Dr. Bruce J. Hillman dissects the war of egos, money, academic power, and Hollywood clout that advanced AIDS research even as it compromised the career of the scientist who discovered the disease. At the beginning of the worldwide epidemic soon to be known as AIDS, Dr. Michael Gottlieb was a young immunologist new to the faculty of UCLA Medical Center. In 1981 he was brought in to consult on a battery of unusual cases: four formerly healthy gay men presenting with persistent fever, weight loss, and highly unusual infections. Other physicians around the country had noted similar clusters of symptoms, but it was Gottlieb who first realized that these patients had a new and deadly disease. He also identified the defect in their immune system that allowed the disease to flourish. He published his findings in a now-iconic lead article in the New England Journal of Medicine—an impressive achievement for such a young scientist—and quickly became the focal point of a whirlwind of panic, envy, desperation, and distrust that played out against a glittering Hollywood backdrop. Courted by the media, the gay community, and the entertainment industry, Gottlieb emerged as the medical face of the terrifying new epidemic when he became personal physician to Rock Hudson, the first celebrity AIDS patient. With Elizabeth Taylor he cofounded the charitable foundation amfAR, which advanced public awareness of AIDS and raised vast sums for research, even as it struggled against political resistance that began with the Reagan administration and trickled down through sedimentary layers of bureaucracy. Far from supporting him, the UCLA medical establishment reacted with dismay to Gottlieb’s early work on AIDS, believing it would tarnish the reputation of the Medical Center. Denied promotion and tenure in 1987, Gottlieb left UCLA for private practice just as the National Institutes of Health awarded the institution a $10 million grant for work he had pioneered there. In the thirty-five years since the discovery of AIDS, research, prevention, and clinical care have advanced to the point that the disease is no longer the death sentence it once was. Gottlieb’s seminal article is now regarded by the New England Journal of Medicine as one of the most significant publications of its two-hundred-year history. A Plague on All Our Houses offers a ringside seat to one of the most important medical discoveries and controversies of our time.

For years, scientists have been warning us that a pandemic was all but inevitable. Now it's here, and the rest of us have a lot to learn. 

Fortunately, science writer Carl Zimmer is here to guide us. In this compact volume, he tells the story of how the smallest living things known to science can bring an entire planet of people to a halt--and what we can learn from how we've defeated them in the past.

Planet of Viruses covers such threats as Ebola, MERS, and chikungunya virus; tells about recent scientific discoveries, such as a hundred-million-year-old virus that infected the common ancestor of armadillos, elephants, and humans; and shares new findings that show why climate change may lead to even deadlier outbreaks. Zimmer’s lucid explanations and fascinating stories demonstrate how deeply humans and viruses are intertwined. Viruses helped give rise to the first life-forms, are responsible for many of our most devastating diseases, and will continue to control our fate for centuries. Thoroughly readable, and, for all its honesty about the threats, as reassuring as it is frightening, A Planet of Viruses is a fascinating tour of a world we all need to better understand.

“Informed, utterly blindsiding account.” - Booklist, starred review

It’s falling from the sky and in the air we breathe. It’s in our food, our clothes, and our homes. It’s microplastic and it’s everywhere—including our own bodies. Scientists are just beginning to discover how these tiny particles threaten health, but the studies are alarming.
 
In A Poison Like No Other, Matt Simon reveals a whole new dimension to the plastic crisis, one even more disturbing than plastic bottles washing up on shores and grocery bags dumped in landfills. Dealing with discarded plastic is bad enough, but when it starts to break down, the real trouble begins. The very thing that makes plastic so useful and ubiquitous – its toughness – means it never really goes away. It just gets smaller and smaller: eventually small enough to enter your lungs or be absorbed by crops or penetrate a fish’s muscle tissue before it becomes dinner.
 
Unlike other pollutants that are single elements or simple chemical compounds, microplastics represent a cocktail of toxicity: plastics contain at least 10,000 different chemicals. Those chemicals are linked to diseases from diabetes to hormone disruption to cancers.
 
A Poison Like No Other is the first book to fully explore this new dimension of the plastic crisis, following the intrepid scientists who travel to the ends of the earth and the bottom of the ocean to understand the consequences of our dependence on plastic. As Simon learns from these researchers, there is no easy fix. But we will never curb our plastic addiction until we begin to recognize the invisible particles all around us. 
 

Since the mid-1980s, Simon Watney has been one of the leading voices in the international field of HIV/AIDS education. His monthly column on AIDS in Britain’s Gay Times is the longest-running column of its kind in Europe, and he is actively involved in HIV/AIDS issues in the United States. His work constitutes a unique dialogue between European and American perspectives on the epidemic. Practices of Freedom brings together for the first time Watney’s pioneering writings on topics ranging from gay men’s Safer Sex education to racist coverage of AIDS in Africa in the international media, from the ethics of clinical drug trials to governmental policies concerning AIDS.
Watney’s voice—neither neutral nor detached—is that of an active and influential participant in the fight against AIDS. He offers a unique view of the ways in which gay men working in community-based organizations have attempted to provide reliable and up-to-date services and information regarding AIDS treatment and health. A leader in insisting on gay men’s entitlements to education, care, and services, Watney was among the first to challenge the "de-gaying" of AIDS service organizations in the late eighties. He also devotes his attention to HIV/AIDS prevention work, research and treatment issues, and the wider cultural politics of the disease, including the role of language, television, and cinema. His analysis of the epidemic as it has unfolded provides a history of many of the major medical and political debates that have defined the course and extent of the crisis.
Practices of Freedom demonstrates the failure of national institutions, from the government to the press, to understand and effectively fight this epidemic, and directs attention to the most urgent needs in American and international AIDS work. It will be an important primary resource, particularly in the United States, where effective community-based HIV/AIDS education tragically has often been neglected.

In Reframing Bodies, Roger Hallas illuminates the capacities of film and video to bear witness to the cultural, political, and psychological imperatives of the AIDS crisis. He explains how queer films and videos made in response to the AIDS epidemics in North America, Europe, Australia, and South Africa challenge longstanding assumptions about both historical trauma and the politics of gay visibility. Drawing on a wide range of works, including activist tapes, found footage films, autobiographical videos, documentary portraits, museum installations, and even film musicals, Hallas reveals how such “queer AIDS media” simultaneously express both immediacy and historical consciousness. Queer AIDS media are neither mere ideological critiques of the dominant media representation of homosexuality and AIDS nor corrective attempts to produce “positive images” of people living with HIV/AIDS. Rather, they perform complex, mediated acts of bearing witness to the individual and collective trauma of AIDS.

Challenging the entrenched media politics of who gets to speak, how, and to whom, Hallas offers a bold reconsideration of the intersubjective relations that connect filmmakers, subjects, and viewers. He explains how queer testimony reframes AIDS witnesses and their speech through its striking combination of direct address and aesthetic experimentation. In addition, Hallas engages recent historical changes and media transformations that have not only displaced queer AIDS media from activism to the archive, but also created new witnessing dynamics through the logics of the database and the remix. Reframing Bodies provides new insight into the work of Gregg Bordowitz, John Greyson, Derek Jarman, Matthias Müller, and Marlon Riggs, and offers critical consideration of important but often overlooked filmmakers, including Jim Hubbard, Jack Lewis, and Stuart Marshall.

A collaborative creation unlike any other, the Names Project Foundation’s AIDS Memorial Quilt has played an invaluable role in shattering the silence and stigma that surrounded the epidemic in the first years of its existence. Designed by Cleve Jones, the AIDS Quilt is the largest ongoing community arts project in the world. Since its conception in 1987, the Quilt has transformed the cultural and political responses to AIDS in the U.S. Representative of both marginalized and mainstream peoples, the Quilt contains crucial material and symbolic implications for mourning the dead, and the treatment and prevention of AIDS. However, the project has raised numerous questions concerning memory, activism, identity, ownership, and nationalism, as well as issues of sexuality, race, class, and gender. As thought-provoking as the Quilt itself, this diverse collection of essays by ten prominent rhetorical scholars provides a rich experience of the AIDS Quilt, incorporating a variety of perspectives, critiques, and interpretations.

In 1959, seventeen-year-old Gary Presley was standing in line, wearing his favorite cowboy boots and waiting for his final inoculation of Salk vaccine. Seven days later, a bad headache caused him to skip basketball practice, tell his dad that he was too ill to feed the calves, and walk from barn to bed with shaky, dizzying steps. He never walked again. By the next day, burning with the fever of polio, he was fastened into the claustrophobic cocoon of the iron lung that would be his home for the next three months. Set among the hardscrabble world of the Missouri Ozarks, sizzling with sarcasm and acerbic wit, his memoir tells the story of his journey from the iron lung to life in a wheelchair.

Presley is no wheelchair hero, no inspiring figure preaching patience and gratitude. An army brat turned farm kid, newly arrived in a conservative rural community, he was immobilized before he could take the next step toward adulthood. Prevented, literally, from taking that next step, he became cranky and crabby, anxious and alienated, a rolling responsibility crippled not just by polio but by anger and depression, “a crip all over, starting with the brain.” Slowly, however, despite the limitations of navigating in a world before the Americans with Disabilities Act, he builds an independent life.

Now, almost fifty years later, having worn out wheelchair after wheelchair, survived post-polio syndrome, and married the woman of his dreams, Gary has redefined himself as Gimp, more ready to act out than to speak up, ironic, perceptive, still cranky and intolerant but more accepting, more able to find joy in his family and his newfound religion. Despite the fact that he detests pity, can spot condescension from miles away, and refuses to play the role of noble victim, he writes in a way that elicits sympathy and understanding and laughter. By giving his readers the unromantic truth about life in a wheelchair, he escapes stereotypes about people with disabilities and moves toward a place where every individual is irreplaceable.

This report explores the complex ethical, political, psychological, and economic questions that arise from developments in medical genetics. It reviews research in applied genetics at the interface of the social and bio-medical fields, including the counseling and study of birth control, as well as the active treatment and selection of individual genetic attributes.

There is no question that AIDS has been, and continues to be, one of the most destructive diseases of the century, taking thousands of lives, devastating communities, and exposing prejudice and bigotry. But AIDS has also been a disease of transformation—it has fueled the national gay civil rights movement, altered medical research and federal drug testing, shaken up both federal and local politics, and inspired a vast cultural outpouring. Victory Deferred, the most comprehensive account of the epidemic in more than ten years, is the history of both the destruction and transformation wrought by AIDS.

John-Manuel Andriote chronicles the impact of the disease from the coming-out revelry of the 1970s to the post-AIDS gay community of the 1990s, showing how it has changed both individual lives and national organizations. He tells the truly remarkable story of how a health crisis pushed a disjointed jumble of local activists to become a nationally visible and politically powerful civil rights movement, a full-fledged minority group challenging the authority of some of the nation's most powerful institutions. Based on hundreds of interviews with those at the forefront of the medical, political, and cultural
responses to the disease, Victory Deferred artfully blends personal narratives with institutional histories and organizational politics to show how AIDS forced gay men from their closets and ghettos into the hallways of power to lobby and into the streets to protest.

Andriote, who has been at the center of national advocacy and AIDS politics in Washington, is judicious without being uncritical, and his account of the political maturation of the gay community is one of the most stirring civil rights stories of our time.

Victory Deferred draws on hundreds of original interviews, including first-hand accounts from: Virginia Apuzzo, Reverend Carl Bean, Marcus Conant, M.D., John D'Emilio, Anthony Fauci, M.D, Fenton Johnson, Larry Kramer, Lawrence D. Mass, M.D., Armistead Maupin, Walt Odets, Torie Osborn, Eric Rofes, Urvashi Vaid, Timothy Westmoreland, and Reggie Williams.

"[Victory Deferred] is a richly textured account of the rise of the AIDS sector, that though detailed and comprehensive, reads quickly. The thematic organization of the book works especially well. The clear chronology of the events reveals how competing models of service delivery, treatment activism and private-public cooperation were subsumed into a national AIDS movement. The book should prove excellent for teaching or recreational reading."—Jose Gabilondo, Washington Post

"[A] fine history of the epidemic. . . . Andriote shines with chapters on less-covered but no less important subjects, including the multibillion-dollar 'AIDS industry' and private fund-raising groups. He brings together in one place many facts and figures heretofore unsynthesized."—Joe R. Neel, Boston Globe

"While many books have explored aspects of the impact of AIDS, Victory Deferred is among the most comprehensive. Andriote's adroit integration of the personal and the historical results is an illustrative, analytical account of the disease and its impact on the gay civil-rights movement. His depiction of the poignant struggles, heroic responses and resultant social and political gains emanating from AIDS is a perceptive document for our time—relevant to all readers, regardless of their sexual orientation."—John R. Killacky, Minneapolis Star Tribune

"[A] well-researched and nuanced portrait of the many lives on which this grave disease has wrought both destruction and transformation."—Publishers Weekly

"Andriote combines broad strokes and telling details in this engaging history of the complicated war against both disease and bigotry."—Library Journal

Waiting for Cancer to Come tells the stories of women who are struggling with their high risk for cancer. Based on interviews and surveys of dozens of women, this book pieces together the diverse yet interlocking experiences of women who have tested positive for the BRCA 1/2 gene mutations, which indicate a higher risk of developing breast and ovarian cancer. Sharlene Hesse-Biber brings these narratives to light and follows women’s journeys from deciding to get screened for BRCA, to learning the test has come back positive, to dealing with their risk. Many women already know the challenges of a family history riddled with cancer and now find themselves with the devastating knowledge of their own genetic risk. Using the voices of the women themselves to describe the under-explored BRCA experience, Waiting for Cancer to Come looks at the varied emotional, social, economic, and psychological factors at play in women’s decisions about testing and cancer prevention.

“In the spring of 1995, the condition I seem to have been waiting for all my life finally struck me.” So begins Jane Lazarre’s account of her transforming battle with breast cancer. Following in the tradition of her critically acclaimed literary memoirs The Mother Knot and Beyond the Whiteness of Whiteness: Memoir of a White Mother of Black Sons, Lazarre brilliantly interweaves her experience of life-threatening illness with other stories of recent and past losses—most notably, that of her mother to breast cancer when Jane was a small child. From these memories and experiences, Lazarre crafts a story that is at once intensely intimate and universally healing.

As she contends with the pain and many indignities of her treatment for cancer, Lazarre realizes that successful medical treatment will only be part of her healing process. Her own illness becomes the vehicle for coming to terms with key moments of loss and grief—the death of a beloved therapist from breast cancer, her brother-in-law’s death from AIDS, a traumatic disappointment in her work life, and the unresolved pain of being a motherless child. The gift of Lazarre’s writing is her ability to transform her narratives of grief and loss into a story whose power to heal lies in its ability to penetrate the unconscious and give voice to the elusive truths hidden there. Through her writing, Lazarre is able to embrace grief—even her own inarticulate grief as a child—and find her way through the story to a restored sense of wholeness.

In Wet Earth and Dreams Jane Lazarre once again proves herself to be both companion and guide through some of the most difficult challenges life has to offer. As always, she draws strength not only from sustaining friendship and love, but also from her own faith in the power of storytelling to make bearable the seemingly unbearable. Lazarre’s bravely and beautifully written account of grief, illness, and death is at the last a celebration of the redemptive possibilities of the creative spirit.

In this poignant and startlingly original book, Brian Doyle examines the heart as a physical organ—how it is supposed to work, how surgeons try to fix it when it doesn’t—and as a metaphor: the seat of the soul, the power house of the body, the essence of spirituality. In a series of profoundly moving ruminations, Doyle considers the scientific, emotional, literary, philosophical, and spiritual understandings of the heart—from cardiology to courage, from love letters and pop songs to Jesus. Weaving these strands together is the torment of Doyle’s own infant son’s heart surgery and the inspiring story of the young heart doctor who saved Liam’s life.

The Wet Engine is a book that will change how you feel and think about the mysterious, fragile human heart. This new paperback edition includes a foreword by Dr. Marla Salmon, dean of the University of Washington School of Nursing.

 

In At the Will of the Body, Arthur Frank told the story of his own illnesses, heart attack and cancer. That book ended by describing the existence of a "remission society," whose members all live with some form of illness or disability. The Wounded Storyteller is their collective portrait.

Ill people are more than victims of disease or patients of medicine; they are wounded storytellers. People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.

Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilties. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.

Frank identifies three basic narratives of illness in restitution, chaos, and quest. Restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. Quest narratives are about finding that insight as illness is transformed into a means for the ill person to become someone new.

Since it was first published in 1995, The Wounded Storyteller has occupied a unique place in the body of work on illness. Both the collective portrait of a so-called “remission society” of those who suffer from some type of illness or disability and a cogent analysis of their stories within a larger framework of narrative theory, Arthur W. Frank’s book has reached a large and diverse readership including the ill, medical professionals, and scholars of literary theory.

Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilities. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic.

In this new edition Frank adds a preface describing the personal and cultural times when the first edition was written. His new afterword extends the book’s argument significantly, writing about storytelling and experience, other modes of illness narration, and a version of hope that is both realistic and aspirational. Reflecting on both his own life during the creation of the first edition and the conclusions of the book itself, Frank reminds us of the power of storytelling as way to understanding our own suffering.