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84 books about AIDS (Disease)
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84 books about AIDS (Disease)
Action=Vie
A History of AIDS Activism and Gay Politics in France
Christophe Broqua
Temple University Press, 2020
Act Up-Paris became one of the most notable protest groups in France in the mid-1990s. Founded in 1989, and following the New York model, it became a confrontational voice representing the interests of those affected by HIV through openly political activism. Action=Vie, the English-language translation of Christophe Broqua’s study of the grassroots activist branch, explains the reasons for the group’s success and sheds light on Act Up's defining features—such as its unique articulation between AIDS and gay activism.
Featuring numerous accounts by witnesses and participants, Broqua traces the history of Act Up-Paris and shows how thousands of gay men and women confronted the AIDS epidemic by mobilizing with public actions. Act Up-Paris helped shape the social definition not only of HIV-positive persons but also of sexual minorities. Broqua analyzes the changes brought about by the group, from the emergence of new treatments for HIV infection to normalizing homosexuality and a controversy involving HIV-positive writers’ remarks about unprotected sex. This rousing history ends in the mid-2000s before marriage equality and antiretroviral treatments caused Act Up-Paris to decline.
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The African AIDS Epidemic
A History
John Iliffe
Ohio University Press, 2006
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.
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African Intimacies
Race, Homosexuality, and Globalization
Neville Hoad
University of Minnesota Press, 2007
There have been few book-length engagements with the question of sexuality in Africa, let alone African homosexuality. African Intimacies simultaneously responds to the public debate on the “Africanness” of homosexuality and interrogates the meaningfulness of the terms “sexuality” and “homosexuality” outside Euro-American discourse. Speculating on cultural practices interpreted by missionaries as sodomy and resistance to colonialism, Neville Hoad begins by analyzing the 1886 Bugandan martyrs incident—the execution of thirty men in the royal court. Then, in a series of close readings, he addresses questions of race, sex, and globalization in the 1965 Wole Soyinka novel The Interpreters, examines the emblematic 1998 Lambeth conference of Anglican bishops, considers the imperial legacy in depictions of the HIV/AIDS crisis, and reveals how South African writer Phaswane Mpe’s contemporary novel Welcome to Our Hillbrow problematizes notions of African identity and cosmopolitanism.Hoad’s assessment of the historical valence of homosexuality in Africa shows how the category has served a key role in a larger story, one in which sexuality has been made in line with a vision of white Western truth, limiting an understanding of intimacy that could imagine an African universalism.Neville Hoad is assistant professor of English at the University of Texas, Austin.
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AIDS Alibis
Sex, Drugs, and Crime in the Americas
Stephanie Kane
Temple University Press, 1998
AIDS Alibis tackles the cultural landscape upon which AIDS, often accompanied by poverty, drug addiction, and crime, proliferates on a global scale. Stephanie Kane layers stories of individuals and events -- from Chicago to Belize City, to cyberspace -- to illustrate the paths of HIV infection and the effects of environment, government intervention, and social mores. Linking ordinary yet kindred lives in communities around the globe, Kane challenges the assumptions underlying the use of police and courts to solve health problems.
The stories reveal the dynamics that determine how the policy decisions of white-collar health care professionals actually play out in real life. By focusing on life-changing social problems, the narratives highlight the contradictions between public health and criminal law. Look at how HIV has transformed our social consciousness, from intimate touch to institutional outreach. But, Kane argues, these changes are dwarfed by the United States's refusal to stop the war on drugs, in effect misdirecting resources and awareness.
AIDS Alibis combines empirical and interpretive methods in a path-breaking attempt to recognize the extent to which coercive institutional practices are implicated in HIV transmission patterns. Kane shows how th e virus feeds on the politics of inequality and indifference, even as it exploits the human need for intimacy and release.
The stories reveal the dynamics that determine how the policy decisions of white-collar health care professionals actually play out in real life. By focusing on life-changing social problems, the narratives highlight the contradictions between public health and criminal law. Look at how HIV has transformed our social consciousness, from intimate touch to institutional outreach. But, Kane argues, these changes are dwarfed by the United States's refusal to stop the war on drugs, in effect misdirecting resources and awareness.
AIDS Alibis combines empirical and interpretive methods in a path-breaking attempt to recognize the extent to which coercive institutional practices are implicated in HIV transmission patterns. Kane shows how th e virus feeds on the politics of inequality and indifference, even as it exploits the human need for intimacy and release.
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AIDS and the Distribution of Crises
Jih-Fei Cheng, Alexandra Juhasz, and Nishant Shahani, editors
Duke University Press, 2020
AIDS and the Distribution of Crises engages with the AIDS pandemic as a network of varied historical, overlapping, and ongoing crises born of global capitalism and colonial, racialized, gendered, and sexual violence. Drawing on their investments in activism, media, anticolonialism, feminism, and queer and trans of color critiques, the scholars, activists, and artists in this volume outline how the neoliberal logic of “crisis” structures how AIDS is aesthetically, institutionally, and politically reproduced and experienced. Among other topics, the authors examine the writing of the history of AIDS; settler colonial narratives and laws impacting risk in Indigenous communities; the early internet regulation of both content and online AIDS activism; the Black gendered and sexual politics of pleasure, desire, and (in)visibility; and how persistent attention to white men has shaped AIDS as intrinsic to multiple, unremarkable crises among people of color and in the Global South.
Contributors. Cecilia Aldarondo, Pablo Alvarez, Marlon M. Bailey, Emily Bass, Darius Bost, Ian Bradley-Perrin, Jih-Fei Cheng, Bishnupriya Ghosh, Roger Hallas, Pato Hebert, Jim Hubbard, Andrew J. Jolivette, Julia S. Jordan-Zachery, Alexandra Juhasz, Dredge Byung'chu Kang-Nguyễn, Theodore (Ted) Kerr, Catherine Yuk-ping Lo, Cait McKinney, Viviane Namaste, Elton Naswood, Cindy Patton, Margaret Rhee, Juana María Rodríguez, Sarah Schulman, Nishant Shahani, C. Riley Snorton, Eric A. Stanley, Jessica Whitbread, Quito Ziegler
Contributors. Cecilia Aldarondo, Pablo Alvarez, Marlon M. Bailey, Emily Bass, Darius Bost, Ian Bradley-Perrin, Jih-Fei Cheng, Bishnupriya Ghosh, Roger Hallas, Pato Hebert, Jim Hubbard, Andrew J. Jolivette, Julia S. Jordan-Zachery, Alexandra Juhasz, Dredge Byung'chu Kang-Nguyễn, Theodore (Ted) Kerr, Catherine Yuk-ping Lo, Cait McKinney, Viviane Namaste, Elton Naswood, Cindy Patton, Margaret Rhee, Juana María Rodríguez, Sarah Schulman, Nishant Shahani, C. Riley Snorton, Eric A. Stanley, Jessica Whitbread, Quito Ziegler
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AIDS and the National Body
Thomas E. Yingling
Duke University Press, 1997
Thomas Yingling was a rising star in American studies, a leading figure in gay and lesbian studies, and a prominent theorist of AIDS and cultural politics when he died in 1992. AIDS and the National Body is a brilliant excursion into the mind and heart of Yingling, author of the critically acclaimed book, Hart Crane and the Homosexual Text. Robyn Wiegman, a friend and colleague of Yingling’s, has collected in this book a selection of his critical and creative work. These previously published and unpublished essays, nonacademic prose, poetry, and letters are a powerful testimonial to the intellectual legacy left by Yingling.
Contemplating the contradictions of individual identity from within a human body adapting to and living within a collective national culture, Yingling delves into such issues as canon formation, poetic theory, and the rhetoric of the body in American popular culture. In addition to Wiegman’s illuminating introduction, the conversation is joined by four other scholars—Michael Awkward, Robert L. Caserio, Stephen Melville, and David Román—whose critical and personal responses to Yingling’s writing weigh in throughout the volume. What emerges is a collection that embodies the particular difficulties of living with AIDS, of outliving someone who has died of AIDS, and of losing prematurely an important thinker.
Contemplating the contradictions of individual identity from within a human body adapting to and living within a collective national culture, Yingling delves into such issues as canon formation, poetic theory, and the rhetoric of the body in American popular culture. In addition to Wiegman’s illuminating introduction, the conversation is joined by four other scholars—Michael Awkward, Robert L. Caserio, Stephen Melville, and David Román—whose critical and personal responses to Yingling’s writing weigh in throughout the volume. What emerges is a collection that embodies the particular difficulties of living with AIDS, of outliving someone who has died of AIDS, and of losing prematurely an important thinker.
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AIDS and the Policy Struggle in the United States
Patricia D. Siplon
Georgetown University Press, 2002
Lucid and compellingly written, Patricia Siplon has immersed herself in the history and ongoing firestorms of how AIDS policies are influenced, fought over, and enacted in the United States. AIDS and the Policy Struggle in the United States is equally as engrossing and as revealing in its own way as And the Band Played On. With an initial chapter that clearly follows the tangled historical string from the first realizations of a medical emergency to today's overwhelming worldwide epidemical crisis, she goes on to look at how medical treatments have changed and grown; how blood policies were formed; how value-based debates raged and continue to rage over prevention; how communities developed to first respond to the crisis, and later organized to fight for health care; and finally-now that AIDS is recognized for the global crisis it is-how foreign policy is being shaped.
Invaluable for activists and anyone involved in fighting for the humane treatment of people with HIV/AIDS around the world, this is also an important and insightful guide to the how and what of public policy as it is fashioned out of the clay of U.S. democratic institutions.
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The AIDS Bureaucracy
Why Society Failed to Meet the AIDS Crisis and How We Might Improve Our Response
Sandra Panem
Harvard University Press, 1988
AIDS is unquestionably the most serious threat to public health in this century--yet how effective has the United States been in coping with this deadly disease? This sobering analysis of the first five years of the AIDS epidemic reveals the failure of traditional approaches in recognizing and managing this health emergency; it is an extremely unsettling probe into what makes the nation ill equipped to handle a crisis of the magnitude of the one that now confronts us.
Sandra Panem pays particular attention to the Public Health Service, within which the vast majority of biomedical research and public health services are organized, including the Centers for Disease Control and the National Institutes of Health. We learn in dismaying detail how shortcomings in communication within and among the many layers of the health establishment delayed management of the crisis.
She also investigates other problems that surface during a health emergency, involving issues such as federal budgeting, partisan politics, bureaucratic bungles, educating the public, the complications of policymaking, and the vexing role of the press. Panem makes specific recommendations for a centrally coordinated federal response to health emergencies, including the creation of a national health emergency plan.
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AIDS
Crisis in Professional Ethics
edited by Elliot D. Cohen and Michael Davis
Temple University Press, 1994
Do patients have the right to know their physician's HIV status?
Can a dentist refuse treatment to an HIV-positive patient?
How do educators determine whether to allow an HIV-positive child to attend school, and if they do, should the parents of other children be informed?
Should a counselor break confidentiality by disclosing to a wife that her husband is infected with HIV?
This collection of original essays carefully examines the difficult moral choices the AIDS pandemic has presented for many professionals—physicians, nurses, dentists, teachers and school administrators, business managers, psychotherapists, lawyers, clergy, journalists, and politicians. In the workplace, problems posed by HIV and AIDS have led to a reexamination of traditional codes of ethics. Providing systematic and reasoned discussions, the authors explore the moral, legal, and ethical issues involved in the reconsideration of policies, standards of conduct, and the practicality of balancing personal and professional ethics.
Contributors: Albert Flores, Joan C. Callahan, Jill Powell, Kenneth Kipnis, Al Gini, Howard Cohen, Martin Gunderson, Joseph A. Edelheit, Michael Pritchard, Vincent J. Samar, Sohair ElBaz, William Pardue, and the editors.
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AIDS Doesn't Show Its Face
Inequality, Morality, and Social Change in Nigeria
Daniel Jordan Smith
University of Chicago Press, 2014
AIDS and Africa are indelibly linked in popular consciousness, but despite widespread awareness of the epidemic, much of the story remains hidden beneath a superficial focus on condoms, sex workers, and antiretrovirals. Africa gets lost in this equation, Daniel Jordan Smith argues, transformed into a mere vehicle to explain AIDS, and in AIDS Doesn’t Show Its Face, he offers a powerful reversal, using AIDS as a lens through which to view Africa.
Drawing on twenty years of fieldwork in Nigeria, Smith tells a story of dramatic social changes, ones implicated in the same inequalities that also factor into local perceptions about AIDS—inequalities of gender, generation, and social class. Nigerians, he shows, view both social inequality and the presence of AIDS in moral terms, as kinds of ethical failure. Mixing ethnographies that describe everyday life with pointed analyses of public health interventions, he demonstrates just how powerful these paired anxieties—medical and social—are, and how the world might better alleviate them through a more sensitive understanding of their relationship.
Drawing on twenty years of fieldwork in Nigeria, Smith tells a story of dramatic social changes, ones implicated in the same inequalities that also factor into local perceptions about AIDS—inequalities of gender, generation, and social class. Nigerians, he shows, view both social inequality and the presence of AIDS in moral terms, as kinds of ethical failure. Mixing ethnographies that describe everyday life with pointed analyses of public health interventions, he demonstrates just how powerful these paired anxieties—medical and social—are, and how the world might better alleviate them through a more sensitive understanding of their relationship.
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AIDS in French Culture
Social Ills, Literary Cures
David Caron
University of Wisconsin Press, 2001
The deluge of metaphors triggered in 1981 in France by the first public reports of what would turn out to be the AIDS epidemic spread with far greater speed and efficiency than the virus itself. To understand why it took France so long to react to the AIDS crisis, AIDS in French Culture analyzes the intersections of three discourses—the literary, the medical, and the political—and traces the origin of French attitudes about AIDS back to nineteenth-century anxieties about nationhood, masculinity, and sexuality.
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AIDS in Industrialized Democracies
Passions, Politics, and Policies
Bayer, Ronald
Rutgers University Press, 1992
In the ten years since the first cases of AIDS were reported, the disease has spread around the world. Every country has had to come up with policies suited to its own conditions, economy, culture, and institutions. The differences among their approaches are striking. This volume, the first international comprehensive comparison of responses to AIDS, is a unique guide to the world's most urgent public health crisis.
Sixteen leading experts in public health, social science, government, and public policy from USA, Canada, Germany, Australia, Spain, Britain, France, the Netherlands, Denmark, Sweden, and Japan candidly recount and analyze the responses of their own nations and comment on the lessons that can be drawn from each country's experience. For each country, they look critically at the tragic statistics of AIDS incidence; the circumstances of AIDS's first appearance; public health traditions of mandatory screening, contact tracing, and quarantine; attitudes toward drug abuse, homosexuality, sex education; publicity about AIDS; legal and customary protections of civil rights, minority groups, medical confidentiality; access to health care and insurance; and the interplay of formal and informal interest groups in shaping policy. The spectrum of AIDS policy ranges from severe "contain-and-control" programs to much more liberal plans based on education, cooperation, and inclusion.
No matter what policy a nation has constructed to deal with AIDS, the coming decade will test how well that policy conforms to democratic ideals. By scrutinizing the responses to AIDS so far, this book aims to give countries around the world a chance to learn from each others' mistakes and triumphs. It will be essential reading for all students and professionals in public health and public policy.
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AIDS, The Winter War
Arthur Kahn
Temple University Press, 1993
"The most complete history of how AIDS treatment activism began--and an appalling look at the government AIDS mismanagement."
--John S. James, AIDS Treatment News
Arthur Kahn traces the history of the struggle for recognition of and action on behalf of the AIDS epidemic. He describes the heroic struggle for survival by persons with AIDS and their allies for survival. He documents the sophisticated and effective mobilization of AIDS activists in the face of apathy from the Reagan and Bush administrations.
Kahn presents a case study of the difficulties involved in bringing new drugs for AIDS to U.S. markets. He outlines the frustrating attempts to promote egg lecithin as the potential medicine for HIV patients after its use showed some signs of success in Israel. Obstruction by the federal bureaucracy, greed and incompetence on the part of the drug industry, stonewalling by scientific mandarins, and impediments to evaluation testing--these are shown to be the cruel realities faces by patients and activists.
After setting this background, Kahn details the work of President Reagan's commission on AIDS. Although news of the establishment of this committee was met with scorn and cynicism, the results of its study were both effective and humane. Led by Admiral James Watkins, whose sensitivity won the respect of both commissions members and gay activists, the Commission on the Human Immunodeficiency Virus (HIV) Epidemic issued a final report that seriously addressed the ramifications of the epidemic for American society as a whole.
"In persuasive detail...Kahn demonstrates [that] the struggle against AIDS requires a continuous fight against vested interests that have little regard for alternative ideas and against egotists who put self-aggrandizement above a worldwide crisis.... Arthur Kahn's book presents the history of the clinical struggle and identifies heroes, many of whom have died fighting for all of us. Their efforts must be recognized. Their struggle is not over."
--William Regelson, M.D., Professor, College of Medicine, Virginia Commonwealth University (from the Introduction)
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Ancestors and Antiretrovirals
The Biopolitics of HIV/AIDS in Post-Apartheid South Africa
Claire Laurier Decoteau
University of Chicago Press, 2013
In the years since the end of apartheid, South Africans have enjoyed a progressive constitution, considerable access to social services for the poor and sick, and a booming economy that has made their nation into one of the wealthiest on the continent. At the same time, South Africa experiences extremely unequal income distribution, and its citizens suffer the highest prevalence of HIV in the world. As Archbishop Desmond Tutu has noted, “AIDS is South Africa’s new apartheid.”
In Ancestors and Antiretrovirals, Claire Laurier Decoteau backs up Tutu’s assertion with powerful arguments about how this came to pass. Decoteau traces the historical shifts in health policy after apartheid and describes their effects, detailing, in particular, the changing relationship between biomedical and indigenous health care, both at the national and the local level. Decoteau tells this story from the perspective of those living with and dying from AIDS in Johannesburg’s squatter camps. At the same time, she exposes the complex and often contradictory ways that the South African government has failed to balance the demands of neoliberal capital with the considerable health needs of its population.
In Ancestors and Antiretrovirals, Claire Laurier Decoteau backs up Tutu’s assertion with powerful arguments about how this came to pass. Decoteau traces the historical shifts in health policy after apartheid and describes their effects, detailing, in particular, the changing relationship between biomedical and indigenous health care, both at the national and the local level. Decoteau tells this story from the perspective of those living with and dying from AIDS in Johannesburg’s squatter camps. At the same time, she exposes the complex and often contradictory ways that the South African government has failed to balance the demands of neoliberal capital with the considerable health needs of its population.
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Best Laid Plans
Cultural Entropy and the Unraveling of AIDS Media Campaigns
Terence E. McDonnell
University of Chicago Press, 2016
We see it all the time: organizations strive to persuade the public to change beliefs or behavior through expensive, expansive media campaigns. Designers painstakingly craft clear, resonant, and culturally sensitive messaging that will motivate people to buy a product, support a cause, vote for a candidate, or take active steps to improve their health. But once these campaigns leave the controlled environments of focus groups, advertising agencies, and stakeholder meetings to circulate, the public interprets and distorts the campaigns in ways their designers never intended or dreamed. In Best Laid Plans, Terence E. McDonnell explains why these attempts at mass persuasion often fail so badly.
McDonnell argues that these well-designed campaigns are undergoing “cultural entropy”: the process through which the intended meanings and uses of cultural objects fracture into alternative meanings, new practices, failed interactions, and blatant disregard. Using AIDS media campaigns in Accra, Ghana, as its central case study, the book walks readers through best-practice, evidence-based media campaigns that fall totally flat. Female condoms are turned into bracelets, AIDS posters become home decorations, red ribbons fade into pink under the sun—to name a few failures. These damaging cultural misfires are not random. Rather, McDonnell makes the case that these disruptions are patterned, widespread, and inevitable—indicative of a broader process of cultural entropy.
McDonnell argues that these well-designed campaigns are undergoing “cultural entropy”: the process through which the intended meanings and uses of cultural objects fracture into alternative meanings, new practices, failed interactions, and blatant disregard. Using AIDS media campaigns in Accra, Ghana, as its central case study, the book walks readers through best-practice, evidence-based media campaigns that fall totally flat. Female condoms are turned into bracelets, AIDS posters become home decorations, red ribbons fade into pink under the sun—to name a few failures. These damaging cultural misfires are not random. Rather, McDonnell makes the case that these disruptions are patterned, widespread, and inevitable—indicative of a broader process of cultural entropy.
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The Boundaries of Blackness
AIDS and the Breakdown of Black Politics
Cathy Cohen
University of Chicago Press, 1999
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.
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.
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Caribbean Pleasure Industry
Tourism, Sexuality, and AIDS in the Dominican Republic
Mark Padilla
University of Chicago Press, 2007
In recent years, the economy of the Caribbean has become almost completely dependent on international tourism. And today one of the chief ways that foreign visitors there seek pleasure is through prostitution. While much has been written on the female sex workers who service these tourists, Caribbean Pleasure Industry shifts the focus onto the men. Drawing on his groundbreaking ethnographic research in the Dominican Republic, Mark Padilla discovers a complex world where the global political and economic impact of tourism has led to shifting sexual identities, growing economic pressures, and new challenges for HIV prevention. In fluid prose, Padilla analyzes men who have sex with male tourists, yet identify themselves as “normal” heterosexual men and struggle to maintain this status within their relationships with wives and girlfriends. Padilla’s exceptional ability to describe the experiences of these men will interest anthropologists, but his examination of bisexuality and tourism as much-neglected factors in the HIV/AIDS epidemic makes this book essential to anyone concerned with health and sexuality in the Caribbean or beyond.
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Children as Caregivers
The Global Fight against Tuberculosis and HIV in Zambia
Hunleth, Jean
Rutgers University Press, 2017
Winner of the 2018 Association for Africanist Anthropology Elliott P. Skinner Book Award
In Zambia, due to the rise of tuberculosis and the closely connected HIV epidemic, a large number of children have experienced the illness or death of at least one parent. Children as Caregivers examines how well intentioned practitioners fail to realize that children take on active caregiving roles when their guardians become seriously ill and demonstrates why understanding children’s care is crucial for global health policy.
Using ethnographic methods, and listening to the voices of the young as well as adults, Jean Hunleth makes the caregiving work of children visible. She shows how children actively seek to “get closer” to ill guardians by providing good care. Both children and ill adults define good care as attentiveness of the young to adults’ physical needs, the ability to carry out treatment and medication programs in the home, and above all, the need to maintain physical closeness and proximity. Children understand that losing their guardians will not only be emotionally devastating, but that such loss is likely to set them adrift in Zambian society, where education and advancement depend on maintaining familial, reciprocal relationships.
View a gallery of images from the book (https://www.flickr.com/photos/childrenascaregivers)
In Zambia, due to the rise of tuberculosis and the closely connected HIV epidemic, a large number of children have experienced the illness or death of at least one parent. Children as Caregivers examines how well intentioned practitioners fail to realize that children take on active caregiving roles when their guardians become seriously ill and demonstrates why understanding children’s care is crucial for global health policy.
Using ethnographic methods, and listening to the voices of the young as well as adults, Jean Hunleth makes the caregiving work of children visible. She shows how children actively seek to “get closer” to ill guardians by providing good care. Both children and ill adults define good care as attentiveness of the young to adults’ physical needs, the ability to carry out treatment and medication programs in the home, and above all, the need to maintain physical closeness and proximity. Children understand that losing their guardians will not only be emotionally devastating, but that such loss is likely to set them adrift in Zambian society, where education and advancement depend on maintaining familial, reciprocal relationships.
View a gallery of images from the book (https://www.flickr.com/photos/childrenascaregivers)
[more]
Commodities of Care
The Business of HIV Testing in China
Elsa L. Fan
University of Minnesota Press, 2021
How global health practices can end up reorganizing practices of care for the people and communities they seek to serve
Commodities of Care examines the unanticipated effects of global health interventions, ideas, and practices as they unfold in communities of men who have sex with men (MSM) in China. Targeted for the scaling-up of HIV testing, Elsa L. Fan examines how the impact of this initiative has transformed these men from subjects of care into commodities of care: through the use of performance-based financing tied to HIV testing, MSM have become a source of economic and political capital.
In ethnographic detail, Fan shows how this particular program, ushered in by global health donors, became the prevailing strategy to control the epidemic in China in the late 2000s. Fan examines the implementation of MSM testing and its effects among these men, arguing that the intervention produced new markets of men, driven by the push to meet testing metrics.
Fan shows how men who have sex with men in China came to see themselves as part of a global “MSM” category, adopting new selfhoods and socialities inextricably tied to HIV and to testing. Wider trends in global health programming have shaped national public health responses in China and, this book reveals, have radically altered the ways health, disease, and care are addressed.
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Confronting AIDS through Literature
THE RESPONSIBILITIES OF REPRESENTATION
Edited by Judith Laurence Pastore
University of Illinois Press, 1993
This anthology offers readers an
array of viewpoints on the use of literature to confront AIDS as a social, literary,
and medical phenomenon. A substantial annotated bibliography allows readers
to pursue other fictional, biographical, poetic, and dramatic works on AIDS,
as well as criticism and analysis of AIDS writing.
array of viewpoints on the use of literature to confront AIDS as a social, literary,
and medical phenomenon. A substantial annotated bibliography allows readers
to pursue other fictional, biographical, poetic, and dramatic works on AIDS,
as well as criticism and analysis of AIDS writing.
[more]
Cooking Data
Culture and Politics in an African Research World
Cal (Crystal) Biruk
Duke University Press, 2018
In Cooking Data Crystal Biruk offers an ethnographic account of research into the demographics of HIV and AIDS in Malawi to rethink the production of quantitative health data. While research practices are often understood within a clean/dirty binary, Biruk shows that data are never clean; rather, they are always “cooked” during their production and inevitably entangled with the lives of those who produce them. Examining how the relationships among fieldworkers, supervisors, respondents, and foreign demographers shape data, Biruk examines the ways in which units of information—such as survey questions and numbers written onto questionnaires by fieldworkers—acquire value as statistics that go on to shape national AIDS policy. Her approach illustrates how on-the-ground dynamics and research cultures mediate the production of global health statistics in ways that impact local economies and formulations of power and expertise.
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Crying for Our Elders
African Orphanhood in the Age of HIV and AIDS
Kristen E. Cheney
University of Chicago Press, 2017
The HIV/AIDS epidemic in Africa has defined the childhoods of an entire generation. Over the past twenty years, international NGOs and charities have devoted immense attention to the millions of African children orphaned by the disease. But in Crying for Our Elders, anthropologist Kristen E. Cheney argues that these humanitarian groups have misread the ‘orphan crisis’. She explains how the global humanitarian focus on orphanhood often elides the social and political circumstances that actually present the greatest adversity to vulnerable children—in effect deepening the crisis and thereby affecting children’s lives as irrevocably as HIV/AIDS itself.
Through ethnographic fieldwork and collaborative research with children in Uganda, Cheney traces how the “best interest” principle that governs children’s’ rights can stigmatize orphans and leave children in the post-antiretroviral era even more vulnerable to exploitation. She details the dramatic effects this has on traditional family support and child protection and stresses child empowerment over pity. Crying for Our Elders advances current discussions on humanitarianism, children’s studies, orphanhood, and kinship. By exploring the unique experience of AIDS orphanhood through the eyes of children, caregivers, and policymakers, Cheney shows that despite the extreme challenges of growing up in the era of HIV/AIDS, the post-ARV generation still holds out hope for the future.
Through ethnographic fieldwork and collaborative research with children in Uganda, Cheney traces how the “best interest” principle that governs children’s’ rights can stigmatize orphans and leave children in the post-antiretroviral era even more vulnerable to exploitation. She details the dramatic effects this has on traditional family support and child protection and stresses child empowerment over pity. Crying for Our Elders advances current discussions on humanitarianism, children’s studies, orphanhood, and kinship. By exploring the unique experience of AIDS orphanhood through the eyes of children, caregivers, and policymakers, Cheney shows that despite the extreme challenges of growing up in the era of HIV/AIDS, the post-ARV generation still holds out hope for the future.
[more]
Diva
Rafael Campo
Duke University Press, 1999
A major new work from one of America's most acclaimed younger poets, Rafael Campo's Diva appears at the intersection of confession and confinement, hyperbole and humility. In his masterful third collection, Campo explores further the epic themes of his Cuban heritage and America's newness, his work as a doctor caring for AIDS patients and his identity as a gay man.
At once relishing and resisting the poetic traditions of formal English verse, Diva showcases Campo moving deftly between received forms and free verse. In each poem the sound of words is transformed into the highest of arts, the act of performance into the exercise of power, and the most profound abjection into the sweet promise of divinity. Culminating with his new and daring translations of Federico García Lorca's sonetos—the great Spanish poet's most homoerotically explicit and formally accomplished poems—Campo's music instills in the reader an exalted understanding of beauty, suffering, and, ultimately, the human capacity for empathy.
At once relishing and resisting the poetic traditions of formal English verse, Diva showcases Campo moving deftly between received forms and free verse. In each poem the sound of words is transformed into the highest of arts, the act of performance into the exercise of power, and the most profound abjection into the sweet promise of divinity. Culminating with his new and daring translations of Federico García Lorca's sonetos—the great Spanish poet's most homoerotically explicit and formally accomplished poems—Campo's music instills in the reader an exalted understanding of beauty, suffering, and, ultimately, the human capacity for empathy.
From reviews of Campo's previous poetry:
“Extraordinary meditations on illness and the healing power of words.”—Lambda Literary Foundation
“Read Campo to enter the bloodstream of a man who, with a haunting clarity of vision, shares his memories, his anguish, his healing love.”—Cortney Davis, Literature and Medicine
“Riveting, provocative, and refreshing—[this volume] is a gift to the clinician who is trying to re-invoke in his or her students the humility, compassion, and deep caring that brought us all into medicine in the first place.”—Dr. Sandra L. Bertman, Annals of Internal Medicine
“[Campo] listens to the sounds the body makes, but what he hears is poetry.”—Zoë Ingalls, Chronicle of Higher Education
“Powerful and accessible.”—Jonathan Jackson, Washington Blade
“Bemused, indelible, and heartbreaking.”—Marilyn Hacker, Out
“[Campo’s] private corral of disparate words twist, torque, collide with gorgeous creative imperative.”—Nomi Eve, Independent Weekly
[more]
Dying Inside
The HIV/AIDS Ward at Limestone Prison
Benjamin Fleury-Steiner
University of Michigan Press, 2008
"The HIV+ men incarcerated in Limestone Prison's Dorm 16 were put there to be forgotten. Not only do Benjamin Fleury-Steiner and Carla Crowder bring these men to life, Fleury-Steiner and Crowder also insist on placing these men in the middle of critical conversations about health policy, mass incarceration, and race. Dense with firsthand accounts, Dying Inside is a nimble, far-ranging and unblinking look at the cruelty inherent in our current penal policies."
---Lisa Kung, Director, Southern Center for Human Rights
"The looming prison health crisis, documented here at its extreme, is a shocking stain on American values and a clear opportunity to rethink our carceral approach to security."
---Jonathan Simon, University of California, Berkeley
"Dying Inside is a riveting account of a health crisis in a hidden prison facility."
---Michael Musheno, San Francisco State University, and coauthor of Deployed
"This fresh and original study should prick all of our consciences about the horrific consequences of the massive carceral state the United States has built over the last three decades."
---Marie Gottschalk, University of Pennsylvania, and author of The Prison and the Gallows
"An important, bold, and humanitarian book."
---Alison Liebling, University of Cambridge
"Fleury-Steiner makes a compelling case that inmate health care in America's prisons and jails has reached the point of catastrophe."
---Sharon Dolovich, University of California, Los Angeles
"Fleury-Steiner's persuasive argument not only exposes the sins of commission and omission on prison cellblocks, but also does an excellent job of showing how these problems are the natural result of our nation's shortsighted and punitive criminal justice policy."
---Allen Hornblum, Temple University, and author of Sentenced to Science
Dying Inside brings the reader face-to-face with the nightmarish conditions inside Limestone Prison's Dorm 16---the segregated HIV ward. Here, patients chained to beds share their space with insects and vermin in the filthy, drafty rooms, and contagious diseases spread like wildfire through a population with untreated---or poorly managed at best---HIV.
While Dorm 16 is a particularly horrific human rights tragedy, it is also a symptom of a disease afflicting the entire U.S. prison system. In recent decades, prison populations have exploded as Americans made mass incarceration the solution to crime, drugs, and other social problems even as privatization of prison services, especially health care, resulted in an overcrowded, underfunded system in which the most marginalized members of our society slowly wither from what the author calls "lethal abandonment."
This eye-opening account of one prison's failed health-care standards is a wake-up call, asking us to examine how we treat our forgotten citizens and compelling us to rethink the American prison system in this increasingly punitive age.
[more]
An Epidemic of Uncertainty
Navigating HIV and Young Adulthood in Malawi
Jenny Trinitapoli
University of Chicago Press, 2023
A decade-long study of young adulthood in Malawi that demonstrates the impact of widespread HIV status uncertainty, laying bare the sociological implications of what is not known.
An Epidemic of Uncertainty advances a new framework for studying social life by emphasizing something social scientists routinely omit from their theories, models, and measures–what people know they don’t know. Taking Malawi’s ongoing AIDS epidemic as an entry point, Jenny Trinitapoli shows that despite admirable declines in new HIV infections and AIDS-related mortality, an epidemic of uncertainty persists; at any given point in time, fully half of Malawian young adults don’t know their HIV status. Reckoning with the impact of this uncertainty within the bustling trading town of Balaka, Trinitapoli argues that HIV-related uncertainty is measurable, pervasive, and impervious to biomedical solutions, with consequences that expand into multiple domains of life, including relationship stability, fertility, and health. Over the duration of a groundbreaking decade-long longitudinal study, rich survey data and poignant ethnographic vignettes vividly depict how individual lives and population patterns unfold against the backdrop of an ever-evolving epidemic. Even as HIV is transformed from a progressive, fatal disease to a chronic and manageable condition, the accompanying epidemic of uncertainty remains fundamental to understanding social life in this part of the world.
Insisting that known unknowns can and should be integrated into social-scientific models of human behavior, An Epidemic of Uncertainty treats uncertainty as an enduring aspect, a central feature, and a powerful force in everyday life.
An Epidemic of Uncertainty advances a new framework for studying social life by emphasizing something social scientists routinely omit from their theories, models, and measures–what people know they don’t know. Taking Malawi’s ongoing AIDS epidemic as an entry point, Jenny Trinitapoli shows that despite admirable declines in new HIV infections and AIDS-related mortality, an epidemic of uncertainty persists; at any given point in time, fully half of Malawian young adults don’t know their HIV status. Reckoning with the impact of this uncertainty within the bustling trading town of Balaka, Trinitapoli argues that HIV-related uncertainty is measurable, pervasive, and impervious to biomedical solutions, with consequences that expand into multiple domains of life, including relationship stability, fertility, and health. Over the duration of a groundbreaking decade-long longitudinal study, rich survey data and poignant ethnographic vignettes vividly depict how individual lives and population patterns unfold against the backdrop of an ever-evolving epidemic. Even as HIV is transformed from a progressive, fatal disease to a chronic and manageable condition, the accompanying epidemic of uncertainty remains fundamental to understanding social life in this part of the world.
Insisting that known unknowns can and should be integrated into social-scientific models of human behavior, An Epidemic of Uncertainty treats uncertainty as an enduring aspect, a central feature, and a powerful force in everyday life.
[more]
Facing It
AIDS Diaries and the Death of the Author
Ross Chambers
University of Michigan Press, 2001
For a generation or more, literary theorists have used the metaphor of "the death of the author" in considering the observation that to write is to abdicate control over the meanings one's text is capable of generating. But in the case of AIDS diaries, the metaphor can be literal. Facing It examines the genre not in classificatory terms but pragmatically, as the site of a social interaction. Through a detailed study of three such diaries, originating respectively in France, the United States, and Australia, Ross Chambers demonstrates that issues concerning the politics of AIDS writing and the ethics of reading are linked by a common concern with the problematics of survivorhood. Two of the diaries chosen for special attention in this light are video diaries: La Pudeur ou l'impudeur by Hervé Guibert (author of To the Friend Who Did Not Save My Life), and Silverlake Life, by the American videomaker Tom Joslin (aided by his lover and friends, notably Peter Friedman). The third is a defiant but anxious text, Unbecoming, by an American anthropologist, Eric Michaels, who died in Brisbane, Australia, in 1988. Other authors more briefly examined include Pascal de Duve, Bertrand Duquénelle, Alain Emmanuel Dreuilhe, David Wojnarowicz, Gary Fisher, and the filmmaker (not a diarist) Laurie Lynd. Finally, Facing It takes on the issue of its own relevance, asking what contributions literary criticism can make in the midst of an epidemic.
"Groundbreaking in its approach and potentially wide in its appeal. . . . The rigor of the ideas, their dramatic nature, and the political drive of the rhetoric all should win Facing It a large readership that could extend far beyond students of narrative or queer theory." --David Bergman, Towson University, editor of Camp Grounds: Style and Homosexuality
Ross Chambers is Distinguished University Professor of French and Comparative Literature, University of Michigan, and author of Room for Maneuver: Reading (the) Oppositional (in) Narrative and Story and Situation: Narrative Seduction and the Power of Fiction.
"Groundbreaking in its approach and potentially wide in its appeal. . . . The rigor of the ideas, their dramatic nature, and the political drive of the rhetoric all should win Facing It a large readership that could extend far beyond students of narrative or queer theory." --David Bergman, Towson University, editor of Camp Grounds: Style and Homosexuality
Ross Chambers is Distinguished University Professor of French and Comparative Literature, University of Michigan, and author of Room for Maneuver: Reading (the) Oppositional (in) Narrative and Story and Situation: Narrative Seduction and the Power of Fiction.
[more]
Fault Lines of Care
Gender, HIV, and Global Health in Bolivia
Heckert, Carina
Rutgers University Press, 2018
The HIV epidemic in Bolivia has received little attention on a global scale in light of the country’s low HIV prevalence rate. However, by profiling the largest city in this land-locked Latin American country, Carina Heckert shows how global health-funded HIV care programs at times clash with local realities, which can have catastrophic effects for people living with HIV who must rely on global health resources to survive. These ethnographic insights, as a result, can be applied to AIDS programs across the globe.
In Fault Lines of Care, Heckert provides a detailed examination of the effects of global health and governmental policy decisions on the everyday lives of people living with HIV in Santa Cruz. She focuses on the gendered dynamics that play a role in the development and implementation of HIV care programs and shows how decisions made from above impact what happens on the ground.
In Fault Lines of Care, Heckert provides a detailed examination of the effects of global health and governmental policy decisions on the everyday lives of people living with HIV in Santa Cruz. She focuses on the gendered dynamics that play a role in the development and implementation of HIV care programs and shows how decisions made from above impact what happens on the ground.
[more]
Fighting For Our Lives
New York's AIDS Community and the Politics of Disease
Chambré, Susan M
Rutgers University Press, 2006
In the first decade of the AIDS epidemic, New York City was struck like no other. By the early nineties, it was struggling with more known cases than the next forty most infected cities, including San Francisco, combined.
Fighting for Our Lives is the first comprehensive social history of New York's AIDS community-a diverse array of people that included not only gay men, but also African Americans, Haitians, Latinos, intravenous drug users, substance abuse professionals, elite supporters, and researchers. Looking back over twenty-five years, Susan Chambré focuses on the ways that these disparate groups formed networks of people and organizations that-both together and separately-supported persons with AIDS, reduced transmission, funded research, and in the process, gave a face to an epidemic that for many years, whether because of indifference, homophobia, or inefficiency, received little attention from government or health care professionals.
Beyond the limits of New York City, and even AIDS, this case study also shows how any epidemic provides a context for observing how societies respond to events that expose the inadequacies of their existing social and institutional arrangements. By drawing attention to the major faults of New York's (and America's) response to a major social and health crisis at the end of the twentieth century, the book urges more effective and sensitive actions-both governmental and civil-in the future.
[more]
Gary In Your Pocket
Stories and Notebooks of Gary Fisher
Gary Fisher
Duke University Press, 1996
The incandescent African American writer Gary Fisher was completely unpublished when he died of AIDS in 1994 at the age of 32. This volume, which includes all of Fisher’s stories and a generous selection from his journals, notebooks, and poems, will introduce readers to a tender, graphic, extravagant, and unswervingly incisive talent. In Fisher’s writings the razor-sharp rage is equalled only by the enveloping sweetness; the raw eroticism by a dazzling writerly elegance. Evocations of a haunting and mobile childhood are mixed in Fisher’s stories with an X-ray view of the racialized sexual vernaculars of gay San Francisco; while the journals braid together the narratives of sexual exploration and discovery, a joyous and deepening vocation as a writer, a growing intimacy with death, and an engagement with racial problematics that becomes ever more gravely and probingly imaginative.
A uniquely intimate, unflinching testimony of the experience of a young, African American gay man in the AIDS emergency, Gary in Your Pocket includes an introduction by Don Belton that describes Fisher’s achievement in the context of other work by Black gay men such as Marlon Riggs and Essex Hemphill, and a biographical afterword by Eve Kosofsky Sedgwick.
A uniquely intimate, unflinching testimony of the experience of a young, African American gay man in the AIDS emergency, Gary in Your Pocket includes an introduction by Don Belton that describes Fisher’s achievement in the context of other work by Black gay men such as Marlon Riggs and Essex Hemphill, and a biographical afterword by Eve Kosofsky Sedgwick.
[more]
Globalizing Aids
Cindy Patton
University of Minnesota Press, 2002
A long-awaited look at responses to the AIDS epidemic in relation to globalization.
As AIDS began to appear around the "global village" in the early 1980s, the closeness brought by new technologies no longer promised wondrous cultural exchange; instead it made possible the transmission of a frightening new kind of disease. International scientific institutions and news organizations quickly constructed a "place" for AIDS in the global imaginary: from the heart of Africa and gay bathhouses in San Francisco to the back streets of Southeast Asia and poverty-stricken neighborhoods in the United States. Such simplistic accounts helped recycle racist ideas about Africans and Asians, intensified homophobic visions of irresponsible gay sexuality, and ignored the scientific and human reality of local experiences of the epidemic.
In Globalizing AIDS, pioneering cultural critic Cindy Patton looks at the complex interaction between modern science, media coverage, and local activism during the first decade of the epidemic. Patton's critique of both the production of scientific credibility and the implementation of public health policy at the local level offers a bold reevaluation of how we think about AIDS and an innovative approach to the reality of the disease.
Cindy Patton is a Winship Distinguished Researcher at Emory University. She is the author of Fatal Advice (1996) and Inventing AIDS (1990).
[more]
Heterosexual Africa?
The History of an Idea from the Age of Exploration to the Age of AIDS
Marc Epprecht
Ohio University Press, 2008
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.
[more]
The History of Blood Transfusion in Sub-Saharan Africa
William H. Schneider
Ohio University Press, 2013
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.
[more]
Hiv and Aids in Africa
Douglas Webb
Pluto Press, 1997
HIV Exceptionalism
Development through Disease in Sierra Leone
Adia Benton
University of Minnesota Press, 2015
WINNER, 2017 RACHEL CARSON PRIZE, SOCIETY FOR THE SOCIAL STUDIES OF SCIENCE
In 2002, Sierra Leone emerged from a decadelong civil war. Seeking international attention and development aid, its government faced a dilemma. Though devastated by conflict, Sierra Leone had a low prevalence of HIV. However, like most African countries, it stood to benefit from a large influx of foreign funds specifically targeted at HIV/AIDS prevention and care.
What Adia Benton chronicles in this ethnographically rich and often moving book is how one war-ravaged nation reoriented itself as a country suffering from HIV at the expense of other, more pressing health concerns. During her fieldwork in the capital, Freetown, a city of one million people, at least thirty NGOs administered internationally funded programs that included HIV/AIDS prevention and care. Benton probes why HIV exceptionalism—the idea that HIV is an exceptional disease requiring an exceptional response—continues to guide approaches to the epidemic worldwide and especially in Africa, even in low-prevalence settings.
In the fourth decade since the emergence of HIV/AIDS, many today are questioning whether the effort and money spent on this health crisis has in fact helped or exacerbated the problem. HIV Exceptionalism does this and more, asking, what are the unanticipated consequences that HIV/AIDS development programs engender?
[more]
Hospital Time
Amy Hoffman
Duke University Press, 1997
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.
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.
[more]
How to Have Theory in an Epidemic
Cultural Chronicles of AIDS
Paula A. Treichler
Duke University Press, 1999
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.
“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.
[more]
If Memory Serves
Gay Men, AIDS, and the Promise of the Queer Past
Christopher Castiglia
University of Minnesota Press, 2011
The AIDS epidemic soured the memory of the sexual revolution and gay liberation of the 1970s, and prominent politicians, commentators, and academics instructed gay men to forget the sexual cultures of the 1970s in order to ensure a healthy future. But without memory there can be no future, argue Christopher Castiglia and Christopher Reed in this exploration of the struggle over gay memory that marked the decades following the onset of AIDS.
Challenging many of the assumptions behind first-wave queer theory, If Memory Serves offers a new perspective on the emergence of contemporary queer culture from the suppression and repression of gay memory. Drawing on a rich archive of videos, films, television shows, novels, monuments, paintings, and sculptures created in the wake of the epidemic, the authors reveal a resistance among critics to valuing—even recognizing—the inscription of gay memory in art, literature, popular culture, and the built environment. Castiglia and Reed explore such topics as the unacknowledged ways in which the popular sitcom Will and Grace circulated gay subcultural references to awaken a desire for belonging among young viewers; the post-traumatic (un)rememberings of queer theory; and the generation of “ideality politics” in the art of Félix González-Torres, the film Chuck & Buck, and the independent video Video Remains.
Inspired by Alasdair MacIntyre’s insight that “the possession of a historical identity and the possession of a social identity coincide,” Castiglia and Reed demonstrate that memory is crafted in response to inadequacies in the present—and therefore a constructive relation to the past is essential to the imagining of a new future.
[more]
In Changing Times
Gay Men and Lesbians Encounter HIV/AIDS
Edited by Martin P. Levine, Peter M. Nardi, and John H. Gagnon
University of Chicago Press, 1997
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.
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.
[more]
In the Shadow of the Epidemic
Being HIV-Negative in the Age of AIDS
Walt Odets
Duke University Press, 1995
For gay men who are HIV-negative in a community devastated by AIDS, survival may be a matter of grief, guilt, anxiety, and isolation. In the Shadow of the Epidemic is a passionate and intimate look at the emotional and psychological impact of AIDS on the lives of the survivors of the epidemic, those who must face on a regular basis the death of friends and, in some cases, the decimation of their communities. Drawing upon his own experience as a clinical psychologist and a decade-long involvement with AIDS/HIV issues, Walt Odets explores the largely unrecognized matters of denial, depression, and identity that mark the experience of uninfected gay men.
Odets calls attention to the dire need to address issues that are affecting HIV-negative individuals—from concerns about sexuality and relations with those who are HIV-positive to universal questions about the nature and meaning of survival in the midst of disease. He argues that such action, while explicitly not directing attention away from the needs of those with AIDS, is essential to the human and biological well-being of gay communities. In the immensely powerful firsthand words of gay men living in a semiprivate holocaust, the need for a broader, compassionate approach to all of the AIDS epidemic’s victims becomes clear. In the Shadow of the Epidemic is a pathbreaking first step toward meeting that need.
Odets calls attention to the dire need to address issues that are affecting HIV-negative individuals—from concerns about sexuality and relations with those who are HIV-positive to universal questions about the nature and meaning of survival in the midst of disease. He argues that such action, while explicitly not directing attention away from the needs of those with AIDS, is essential to the human and biological well-being of gay communities. In the immensely powerful firsthand words of gay men living in a semiprivate holocaust, the need for a broader, compassionate approach to all of the AIDS epidemic’s victims becomes clear. In the Shadow of the Epidemic is a pathbreaking first step toward meeting that need.
[more]
Infected Kin
Orphan Care and AIDS in Lesotho
Ellen Block
Rutgers University Press, 2019
AIDS has devastated communities across southern Africa. In Lesotho, where a quarter of adults are infected, the wide-ranging implications of the disease have been felt in every family, disrupting key aspects of social life. In Infected Kin, Ellen Block and Will McGrath argue that AIDS is fundamentally a kinship disease, examining the ways it transcends infected individuals and seeps into kin relations and networks of care. While much AIDS scholarship has turned away from the difficult daily realities of those affected by the disease, Infected Kin uses both ethnographic scholarship and creative nonfiction to bring to life the joys and struggles of the Basotho people at the heart of the AIDS pandemic. The result is a book accessible to wide readership, yet built upon scholarship and theoretical contributions that ensure Infected Kin will remain relevant to anyone interested in anthropology, kinship, global health, and care.
Supplementary instructor resources (https://www.csbsju.edu/sociology/faculty/anthropology-teaching-resources/infected-kin-teaching-resources)
Supplementary instructor resources (https://www.csbsju.edu/sociology/faculty/anthropology-teaching-resources/infected-kin-teaching-resources)
[more]
Killing with Kindness
Haiti, International Aid, and NGOs
Schuller, Mark
Rutgers University Press, 2012
Winner of the 2015 Margaret Mead Award from the American Anthropological Association and the Society for Applied Anthropology
After Haiti’s 2010 earthquake, over half of U.S. households donated to thousands of nongovernmental organizations (NGOs) in that country. Yet we continue to hear stories of misery from Haiti. Why have NGOs failed at their mission?
Set in Haiti during the 2004 coup and aftermath and enhanced by research conducted after the 2010 earthquake, Killing with Kindness analyzes the impact of official development aid on recipient NGOs and their relationships with local communities. Written like a detective story, the book offers rich enthnographic comparisons of two Haitian women’s NGOs working in HIV/AIDS prevention, one with public funding (including USAID), the other with private European NGO partners. Mark Schuller looks at participation and autonomy, analyzing donor policies that inhibit these goals. He focuses on NGOs’ roles as intermediaries in “gluing” the contemporary world system together and shows how power works within the aid system as these intermediaries impose interpretations of unclear mandates down the chain—a process Schuller calls “trickle-down imperialism.”
[more]
Landscapes of Activism
Civil Society, HIV and AIDS Care in Northern Mozambique
Reed, Joel Christian
Rutgers University Press, 2018
AIDS activists are often romanticized as extremely noble and selfless. However, the relationships among HIV support group members highlighted in Landscapes of Activism are hardly utopian or ideal. At first, the group has everything it needs, a thriving membership, and support from major donors. Soon, the group undergoes an identity crisis over money and power, eventually fading from the scene. As government and development institutions embraced activist demands—decentralizing AIDS care through policies of health systems strengthening—civil society was increasingly rendered obsolete. Charting this transition—from subjects, to citizens, and back again—reveals the inefficacy of protest, and the importance of community resilience. The product of in-depth ethnography and focused anthropological inquiry, this is the first book on AIDS activists in Mozambique. AIDS activism’s strange decline in southern Africa, rather than a reflection of citizen apathy, is the direct result of targeted state and donor intervention.
[more]
Life with AIDS
Weitz, Rose
Rutgers University Press, 1991
Rose Weitz presents a holistic picture of the experiences of people with HIV disease, using their own words and focusing on the issues that they consider important. Her information comes from in-depth interviews with women and men who have HIV disease--from those who are asymptomatic but infected to those who have full-blown AIDS--and from interviews with doctors who treat persons with HIV disease.
Weitz describes how these people are affected by and respond to the changes in their bodies and their social relationships, from the time when they realize that they are at risk of infection to the time when death approaches. It covers such issues as how individuals obtain diagnoses, develop their initial ideas about what the future will bring, and come to terms with their impending deaths. To put this into a broader context, she also explores the moral status of illness in general and looks at why some illnesses, including HIV disease, have become especially stigmatized.
The author also explores how doctors are affected by and cope with the unique pressures of treating persons with HIV disease. The concluding chapter theorizes about how changes in the social construction, demographic distribution, and treatment of HIV disease are changing the lives of people with AIDS.
Weitz describes how these people are affected by and respond to the changes in their bodies and their social relationships, from the time when they realize that they are at risk of infection to the time when death approaches. It covers such issues as how individuals obtain diagnoses, develop their initial ideas about what the future will bring, and come to terms with their impending deaths. To put this into a broader context, she also explores the moral status of illness in general and looks at why some illnesses, including HIV disease, have become especially stigmatized.
The author also explores how doctors are affected by and cope with the unique pressures of treating persons with HIV disease. The concluding chapter theorizes about how changes in the social construction, demographic distribution, and treatment of HIV disease are changing the lives of people with AIDS.
[more]
Loss within Loss
Artists in the Age of AIDS
Edited by Edmund White; In Cooperation with the Estate Project for Artists with AIDS, a project of the Alliance for the Arts
University of Wisconsin Press, 2002
When an artist dies we face two great losses: the person and the work he did not live to do. Loss within Loss is a moving collaboration by some of America's most eloquent writers, who supply wry, raging, sorrowful, and buoyant accounts of artist friends and lovers struck down by AIDS. These essayists include Maya Angelou, Alan Gurganus, Brad Gooch, John Berendt, Craig Lucas, Robert Rosenblum, and eighteen others. Many of the subjects of the essays were already prominent—James Merrill, Paul Monette, David Wojnarowicz—but many others died young, before they were able to fulfil the promise of their lives and art. Loss within Loss spans all of the arts and includes portraits of choreographers, painters, poets, actors, playwrights, sculptors, editors, composers, and architects.
This landmark book is published in association with the Estate Project for Artists with AIDS, a national organization that preserves art works created by artists living with HIV or lost to AIDS. Loss within Loss stands as a powerful reminder of the devastating impact of the AIDS epidemic on the arts community and as the first real survey of that devastation. Though these accounts are often intensely sad, Loss within Loss is an invigorating, sometimes even exuberant, testimony to the sheer joy of being an artist . . . and being alive.
[more]
Men Who Sell Sex
International Perspectives on Male Prostitution and AIDS
Peter Aggleton
Temple University Press, 1999
While much is known about prostitution and sex work from studies of female sex workers and their customers, relatively little is known about men who sell sex, either to women or other men. Particularly poorly understood are their motivations for doing so, the circumstances in which the sale of sex occurs, the meanings attached to the acts by both sex worker and client, and the HIV-related risks involved.
Each chapter, written by a national expert, is based on months and even years of interviews with male sex workers, including young boys and elderly men in some countries. The workers discuss why they do the work, what it is like, and what their behavior means to them. For example, those who have regular sex with men often strenuously affirm their heterosexuality, though there is considerable variety in their attitudes.
Each chapter relates the experiences of the male sex workers to the political economy of their neighborhood and assesses the implications of their work for HIV transmission and the AIDS epidemic. The researchers and the sex workers discuss the value of different kinds of health promotion interventions.
Each chapter, written by a national expert, is based on months and even years of interviews with male sex workers, including young boys and elderly men in some countries. The workers discuss why they do the work, what it is like, and what their behavior means to them. For example, those who have regular sex with men often strenuously affirm their heterosexuality, though there is considerable variety in their attitudes.
Each chapter relates the experiences of the male sex workers to the political economy of their neighborhood and assesses the implications of their work for HIV transmission and the AIDS epidemic. The researchers and the sex workers discuss the value of different kinds of health promotion interventions.
[more]
Mobilizing Against AIDS
Revised and Enlarged Edition
Eve K. Nichols
Harvard University Press, 1989
The most important public health problem of our time—AIDS—is also the most shrouded in myth and misinformation. To bring the facts out of the shadows of fear and hysteria, the first edition of Mobilizing against AIDS was published in 1986. This new edition, nearly double the size of the first, interprets the results of the latest research on the disease and possible methods of treatment.
For the foreseeable future the vast majority of AIDS cases will occur among groups that have already experienced major losses: homosexual and bisexual men, intravenous drug abusers, people who received blood or blood products before techniques were developed to safeguard the blood supply, heterosexual partners of those at recognized risk of HIV infection, and infants born to infected mothers. Mobilizing against AIDS examines new data on the growth of the epidemic within these groups, as well as on successful and failed attempts to stop the spread of the disease. In addition, it explores the growing problem of AIDS among the urban poor.
This new edition also presents up to date information on how the disease affects the body, including damage to immune cells, bone marrow cells, skin cells, and cells of the cervix and colon. It contains additional discussions of treatment (particularly drug therapy and prospects for a vaccine) and a searching examination of the implications of societal and individual stress caused by the epidemic. In summarizing the events that have taken place in the last few years, Eve K. Nichols has worked closely with the Institute of Medicine, National Academy of Sciences and other key players in the battle against AIDS. Maintaining the clear and nontechnical style that has been so widely acclaimed, Nichols has forged an extraordinarily thorough synthesis that carries an authoritative stamp, ensuring that this new edition will be an indispensable resource for everyone concerned with AIDS and its treatment.
[more]
Modern Nature
Derek Jarman
University of Minnesota Press, 2009
Moving Politics
Emotion and ACT UP's Fight against AIDS
Deborah B. Gould
University of Chicago Press, 2009
In the late 1980s, after a decade spent engaged in more routine interest-group politics, thousands of lesbians and gay men responded to the AIDS crisis by defiantly and dramatically taking to the streets. But by the early 1990s, the organization they founded, ACT UP, was no more—even as the AIDS epidemic raged on. Weaving together interviews with activists, extensive research, and reflections on the author’s time as a member of the organization, Moving Politics is the first book to chronicle the rise and fall of ACT UP, highlighting a key factor in its trajectory: emotion.
Surprisingly overlooked by many scholars of social movements, emotion, Gould argues, plays a fundamental role in political activism. From anger to hope, pride to shame, and solidarity to despair, feelings played a significant part in ACT UP’s provocative style of protest, which included raucous demonstrations, die-ins, and other kinds of street theater. Detailing the movement’s public triumphs and private setbacks, Moving Politics is the definitive account of ACT UP’s origin, development, and decline as well as a searching look at the role of emotion in contentious politics.
[more]
The Night is Young
Sexuality in Mexico in the Time of AIDS
Héctor Carrillo
University of Chicago Press, 2002
The Night Is Young takes us past the stereotypes of macho hombres and dark-eyed señoritas to reveal the complex nature of sexuality in modern-day Mexico. Drawing on field research conducted in Guadalajara, Mexico's second-largest city, Héctor Carrillo shows how modernization, globalization, and other social changes have affected a wide range of hetero- and homosexual practices and identities.
Carrillo finds that young Mexicans today grapple in a variety of ways with two competing tendencies. On the one hand, many seek to challenge traditional ideas and values they find limiting. But they also want to maintain a sense of Mexico's cultural distinctiveness, especially in relation to the United States. For example, while Mexicans are well aware of the dangers of unprotected sex, they may also prize the surrender to sexual passion, even in casual sexual encounters—an attitude which stems from the strong values placed on collective life, spontaneity, and an openness toward intimacy. Because these expectations contrast sharply with messages about individuality, planning, and overt negotiation commonly promoted in global public health efforts, Carrillo argues that they demand a new approach to AIDS prevention education in Mexico.
A Mexican native, Carrillo has written an exceptionally insightful and accessible study of the relations among sexuality, social change, and AIDS prevention in Mexico. Anyone concerned with the changing place of sexuality in a modern and increasingly globalized world will profit greatly from The Night Is Young.
Carrillo finds that young Mexicans today grapple in a variety of ways with two competing tendencies. On the one hand, many seek to challenge traditional ideas and values they find limiting. But they also want to maintain a sense of Mexico's cultural distinctiveness, especially in relation to the United States. For example, while Mexicans are well aware of the dangers of unprotected sex, they may also prize the surrender to sexual passion, even in casual sexual encounters—an attitude which stems from the strong values placed on collective life, spontaneity, and an openness toward intimacy. Because these expectations contrast sharply with messages about individuality, planning, and overt negotiation commonly promoted in global public health efforts, Carrillo argues that they demand a new approach to AIDS prevention education in Mexico.
A Mexican native, Carrillo has written an exceptionally insightful and accessible study of the relations among sexuality, social change, and AIDS prevention in Mexico. Anyone concerned with the changing place of sexuality in a modern and increasingly globalized world will profit greatly from The Night Is Young.
[more]
Notorious H.I.V.
The Media Spectacle Of Nushawn Williams
Thomas Shevory
University of Minnesota Press, 2004
On Christopher Street
Life, Sex, and Death after Stonewall
Michael Denneny
University of Chicago Press, 2023
Through the eyes of publishing icon Michael Denneny, this cultural autobiography traces the evolution of the US’s queer community in the three decades post-Stonewall.
The Stonewall Riots of 1969 and the AIDS crisis of the 1980s have been captured in minute detail, and rightly memorialized in books, on tv, and in film as pivotal and powerful moments in queer history. Yet what about the moments in between—the tumultuous decade post-Stonewall when the queer community’s vitality and creativity exploded across the country, even as the AIDS crisis emerged?
Michael Denneny was there for it all. As a founder and editor of the wildly influential magazine Christopher Street and later as the first openly gay editor at a major publishing house, Denneny critically shaped publishing around gay subjects in the 1970s and beyond. At St. Martin’s Press, he acquired a slew of landmark titles by gay authors—many for his groundbreaking Stonewall Inn Editions—propelling queer voices into the mainstream cultural conversation. On Christopher Street is Denneny’s time machine, going back to that heady period to lay out the unfolding geographies and storylines of gay lives and capturing the raw immediacy of his and his contemporaries’ daily lives as gay people in America. Through forty-one micro-chapters, he uses his journal writings, articles, interviews, and more from the 1970s and ‘80s to illuminate the twists and turns of a period of incomparable cultural ferment.
One of the few surviving voices of his generation, Denneny transports us back in time to share those vibrant in-between moments in gay lives—the joy, sorrow, ecstasy, and energy—across three decades of queer history.
The Stonewall Riots of 1969 and the AIDS crisis of the 1980s have been captured in minute detail, and rightly memorialized in books, on tv, and in film as pivotal and powerful moments in queer history. Yet what about the moments in between—the tumultuous decade post-Stonewall when the queer community’s vitality and creativity exploded across the country, even as the AIDS crisis emerged?
Michael Denneny was there for it all. As a founder and editor of the wildly influential magazine Christopher Street and later as the first openly gay editor at a major publishing house, Denneny critically shaped publishing around gay subjects in the 1970s and beyond. At St. Martin’s Press, he acquired a slew of landmark titles by gay authors—many for his groundbreaking Stonewall Inn Editions—propelling queer voices into the mainstream cultural conversation. On Christopher Street is Denneny’s time machine, going back to that heady period to lay out the unfolding geographies and storylines of gay lives and capturing the raw immediacy of his and his contemporaries’ daily lives as gay people in America. Through forty-one micro-chapters, he uses his journal writings, articles, interviews, and more from the 1970s and ‘80s to illuminate the twists and turns of a period of incomparable cultural ferment.
One of the few surviving voices of his generation, Denneny transports us back in time to share those vibrant in-between moments in gay lives—the joy, sorrow, ecstasy, and energy—across three decades of queer history.
[more]
Once Upon A Virus
Diane E. Goldstein
Utah State University Press, 2004
Once Upon a Virus explores how contemporary, or "urban," legends are indicators of culturally complex attitudes toward health and illness. Tracing the rich tradition of AIDS legends in relation to current scholarship on belief, Diane Goldstein shows how such stories not only articulate widespread perceptions of risk, health care, and health policy, they also influence official and scientific approaches to the disease and its management. Notions that appear in narratives of who gets AIDS, how and why, are indicators of broad issues involving health beliefs, concerns, and needs.
[more]
Para-States and Medical Science
Making African Global Health
P. Wenzel Geissler, editor
Duke University Press, 2015
In Para-States and Medical Science, P. Wenzel Geissler and the contributors examine how medicine and public health in Africa have been transformed as a result of economic and political liberalization and globalization, intertwined with epidemiological and technological changes. The resulting fragmented medical science landscape is shaped and sustained by transnational flows of expertise and resources. NGOs, universities, pharmaceutical companies and other nonstate actors now play a significant role in medical research and treatment. But as the contributors to this volume argue, these groups have not supplanted the primacy of the nation-state in Africa. Although not necessarily stable or responsive, national governments remain crucial in medical care, both as employers of health care professionals and as sources of regulation, access, and – albeit sometimes counterintuitively - trust for their people. “The state” has morphed into the “para-state” — not a monolithic and predictable source of sovereignty and governance, but a shifting, and at times ephemeral, figure. Tracing the emergence of the “global health” paradigm in Africa in the treatment of HIV, malaria, and leprosy, this book challenges familiar notions of African statehood as weak or illegitimate by elaborating complex new frameworks of governmentality that can be simultaneously functioning and dysfunctional.
Contributors. Uli Beisel, Didier Fassin, P. Wenzel Geissler, Rene Gerrets, Ann Kelly, Guillaume Lachenal, John Manton, Lotte Meinert, Vinh-Kim Nguyen, Branwyn Poleykett, Susan Reynolds Whyte
Contributors. Uli Beisel, Didier Fassin, P. Wenzel Geissler, Rene Gerrets, Ann Kelly, Guillaume Lachenal, John Manton, Lotte Meinert, Vinh-Kim Nguyen, Branwyn Poleykett, Susan Reynolds Whyte
[more]
Patient Zero and the Making of the AIDS Epidemic
Richard A. McKay
University of Chicago Press, 2017
Now an award-winning documentary feature film
The search for a “patient zero”—popularly understood to be the first person infected in an epidemic—has been key to media coverage of major infectious disease outbreaks for more than three decades. Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder.
McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.
The search for a “patient zero”—popularly understood to be the first person infected in an epidemic—has been key to media coverage of major infectious disease outbreaks for more than three decades. Yet the term itself did not exist before the emergence of the HIV/AIDS epidemic in the 1980s. How did this idea so swiftly come to exert such a strong grip on the scientific, media, and popular consciousness? In Patient Zero, Richard A. McKay interprets a wealth of archival sources and interviews to demonstrate how this seemingly new concept drew upon centuries-old ideas—and fears—about contagion and social disorder.
McKay presents a carefully documented and sensitively written account of the life of Gaétan Dugas, a gay man whose skin cancer diagnosis in 1980 took on very different meanings as the HIV/AIDS epidemic developed—and who received widespread posthumous infamy when he was incorrectly identified as patient zero of the North American outbreak. McKay shows how investigators from the US Centers for Disease Control inadvertently created the term amid their early research into the emerging health crisis; how an ambitious journalist dramatically amplified the idea in his determination to reframe national debates about AIDS; and how many individuals grappled with the notion of patient zero—adopting, challenging and redirecting its powerful meanings—as they tried to make sense of and respond to the first fifteen years of an unfolding epidemic. With important insights for our interconnected age, Patient Zero untangles the complex process by which individuals and groups create meaning and allocate blame when faced with new disease threats. What McKay gives us here is myth-smashing revisionist history at its best.
[more]
Piecing the Puzzle
The Genesis of AIDS Research in Africa
Larry Krotz
University of Manitoba Press, 2012
A Pill for Promiscuity
Gay Sex in an Age of Pharmaceuticals
Andrew R. Spieldenner
Rutgers University Press, 2023
For a generation of gay men who came of age in the 1980s and 1990s, becoming sexually active meant confronting the dangers of catching and transmitting HIV. In the 21st century, however, the development of viral suppression treatments and preventative pills such as PrEP and nPEP has massively reduced the risk of acquiring HIV. Yet some of the stigma around gay male promiscuity and bareback sex has remained, inhibiting open dialogues about sexual desire, risk, and pleasure.
A Pill for Promiscuity brings together academics, artists, and activists—from different generations, countries, ethnic backgrounds, and HIV statuses—to reflect on how gay sex has changed in a post-PrEP era. Some offer personal perspectives on the value of promiscuity and the sexual communities it fosters, while others critique unequal access to PrEP and the increased role Big Pharma now plays in gay life. With a diverse group of contributors that includes novelist Andrew Holleran, trans scholar Lore/tta LeMaster, cartoonist Steve MacIsaac, and pornographic film director Mister Pam, this book asks provocative questions about how we might reimagine queer sex and sexuality in the 21st century.
A Pill for Promiscuity brings together academics, artists, and activists—from different generations, countries, ethnic backgrounds, and HIV statuses—to reflect on how gay sex has changed in a post-PrEP era. Some offer personal perspectives on the value of promiscuity and the sexual communities it fosters, while others critique unequal access to PrEP and the increased role Big Pharma now plays in gay life. With a diverse group of contributors that includes novelist Andrew Holleran, trans scholar Lore/tta LeMaster, cartoonist Steve MacIsaac, and pornographic film director Mister Pam, this book asks provocative questions about how we might reimagine queer sex and sexuality in the 21st century.
[more]
A Plague of Paradoxes
AIDS, Culture, and Demography in Northern Tanzania
Philip W. Setel
University of Chicago Press, 1999
Since recording its first AIDS cases in 1983, Tanzania has reported nearly 90,000 more to the World Health Organization—more than any other country in Africa. As AIDS spread, the devastating syndrome came to be known simply as ugonjwa huo: "that disease."
The AIDS epidemic has forced Africans to reflect upon the meaning of traditional ideas and practices related to sexuality and fertility, and upon modernity and biomedicine. In A Plague of Paradoxes, anthropologist Philip Setel observes Tanzania's Chagga people and their attempts to cope with and understand AIDS—the latest in a series of crises over which they feel they have little, if any, control.
Timely and well-researched, A Plague of Paradoxes is an extended case study of the most serious epidemic of the twentieth century and the cultural circumstances out of which it emerged. It is a unique book that brings together anthropology, demography, and epidemiology to explain how a particular community in Africa experiences AIDS.
The AIDS epidemic has forced Africans to reflect upon the meaning of traditional ideas and practices related to sexuality and fertility, and upon modernity and biomedicine. In A Plague of Paradoxes, anthropologist Philip Setel observes Tanzania's Chagga people and their attempts to cope with and understand AIDS—the latest in a series of crises over which they feel they have little, if any, control.
Timely and well-researched, A Plague of Paradoxes is an extended case study of the most serious epidemic of the twentieth century and the cultural circumstances out of which it emerged. It is a unique book that brings together anthropology, demography, and epidemiology to explain how a particular community in Africa experiences AIDS.
[more]
A Plague on All Our Houses
Medical Intrigue, Hollywood, and the Discovery of AIDS
Bruce J. Hillman
University Press of New England, 2016
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.
[more]
Plague Years
A Doctor’s Journey through the AIDS Crisis
Ross A. Slotten, MD
University of Chicago Press, 2020
In 1992, Dr. Ross A. Slotten signed more death certificates in Chicago—and, by inference, the state of Illinois—than anyone else. As a family physician, he was trained to care for patients from birth to death, but when he completed his residency in 1984, he had no idea that many of his future patients would be cut down in the prime of their lives. Among those patients were friends, colleagues, and lovers, shunned by most of the medical community because they were gay and HIV positive. Slotten wasn’t an infectious disease specialist, but because of his unique position as both a gay man and a young physician, he became an unlikely pioneer, swept up in one of the worst epidemics in modern history.
Plague Years is an unprecedented first-person account of that epidemic, spanning not just the city of Chicago but four continents as well. Slotten provides an intimate yet comprehensive view of the disease’s spread alongside heartfelt portraits of his patients and his own conflicted feelings as a medical professional, drawn from more than thirty years of personal notebooks. In telling the story of someone who was as much a potential patient as a doctor, Plague Years sheds light on the darkest hours in the history of the LGBT community in ways that no previous medical memoir has.
Plague Years is an unprecedented first-person account of that epidemic, spanning not just the city of Chicago but four continents as well. Slotten provides an intimate yet comprehensive view of the disease’s spread alongside heartfelt portraits of his patients and his own conflicted feelings as a medical professional, drawn from more than thirty years of personal notebooks. In telling the story of someone who was as much a potential patient as a doctor, Plague Years sheds light on the darkest hours in the history of the LGBT community in ways that no previous medical memoir has.
[more]
Policing Desire
Pornography, AIDS and the Media
Simon Watney
University of Minnesota Press, 1997
The Political Economy of Stigma
HIV, Memoir, Medicine, and Crip Positionalities
Ally Day
The Ohio State University Press, 2021
Winner, 2022 Alison Piepmeier Prize from the National Women’s Studies Association
In The Political Economy of Stigma, Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.
The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.
In The Political Economy of Stigma, Ally Day offers a compelling critique of neoliberal medical practices in the US by coupling an analysis of HIV memoir with a critical examination of narrative medicine practice. Using insights from feminist disability studies and crip theory, Day argues that stories of illness and disability—such as HIV memoirs—operate within a political economy of stigma, which she defines as the formal and informal circulation of personal illness and disability narratives that benefits some while hindering others. On the one hand, this system decreases access to appropriate medical care for those with chronic conditions by producing narratives of personal illness that frame one’s relationship to structural inequality as a result of personal failure. On the other hand, the political economy of stigma rewards those who procure such narratives and circulate them for public consumption.
The political economy of stigma is theorized from three primary research sites: a reading group with women living with HIV, a reading group with AIDS service workers, and participant observation research and critical close reading of practices in narrative medicine. Ultimately, it is the women living with HIV who provide an alternative way to understand disability and illness narratives, a practice of differential reading that can challenge stigmatizing tropes and reconceptualize the creation, reception, and circulation of patient memoir.
[more]
Practices of Freedom
Selected Writings on HIV/AIDS
Simon Watney
Duke University Press, 1994
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.
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.
[more]
Prevention
Gender, Sexuality, HIV, and the Media in Côte d'Ivoire
Christine Cynn
The Ohio State University Press, 2018
Approximately 70% of the global total of people living with HIV/AIDS in 2016 were in sub-Saharan Africa. After delayed governmental responses, the media has been consistently deployed as an essential tool for prevention. But HIV prevention campaigns reflect multiple conflicting and shifting agendas that encompass far more than the imparting of information about how to limit the spread of the virus. In Prevention: Gender, Sexuality, HIV, and the Media in Côte d’Ivoire, Christine Cynn draws from postcolonial, queer, and feminist film and media studies to critique global HIV prevention efforts and how they attempt to reshape gendered sexualities and notions of family in line with the rationality of neoliberalism.
More specifically, Cynn argues that through the bolstering of normative conceptions of gendered sexualities and families, HIV prevention media campaigns seek to actively create proper subjects, a goal corresponding with nation-building projects and reproducing their terms of belonging. During periods of increasingly virulent political and economic struggles in Côte d’Ivoire, such HIV prevention messages have lent support to lender- and state-mandated structural adjustment policies and to the exclusionary logic that casts some—such as those suffering from AIDS-related illnesses, those labeled as “homosexual,” sex workers, intravenous drug users, and the HIV-positive child—as implicitly unassimilable to the community and nation. Deeply interdisciplinary, Prevention brings to light new forms of exclusion and expands scholarship on gender and sexual normativities as it intersects with that on public health, neoliberalism, and film and media.
More specifically, Cynn argues that through the bolstering of normative conceptions of gendered sexualities and families, HIV prevention media campaigns seek to actively create proper subjects, a goal corresponding with nation-building projects and reproducing their terms of belonging. During periods of increasingly virulent political and economic struggles in Côte d’Ivoire, such HIV prevention messages have lent support to lender- and state-mandated structural adjustment policies and to the exclusionary logic that casts some—such as those suffering from AIDS-related illnesses, those labeled as “homosexual,” sex workers, intravenous drug users, and the HIV-positive child—as implicitly unassimilable to the community and nation. Deeply interdisciplinary, Prevention brings to light new forms of exclusion and expands scholarship on gender and sexual normativities as it intersects with that on public health, neoliberalism, and film and media.
[more]
Private Acts, Social Consequences
Bayer, Ronald
Rutgers University Press, 1991
From Publishers Weekly
Bayer, staff member of a policy studies center in New York State, here reviews the record of public agencies in dealing with AIDS-created biological, social and political problems, including resolution of conflicts between privacy and the public good. He notes the contradiction between Centers for Disease Control recommendations of counseling, education and broad-scale voluntary testing of all Americans at risk, and federal policies that favor mandatory testing of the military, marriage applicants, hospital workers, patients and prostitutes, among others, and quarantine of AIDS carriers advocated by some states. Bayer recommends restraint by individuals in sexual matters and drug use, accompanied by an assault on the economic and social problems that underlie the epidemic, especially as regards the newborn and teenagers. In the growing body of AIDS literature, this is a valuable fact-finding study that should interest a lay as well as professional audience.
From Library Journal
Bayer's topic is the politically charged dilemma AIDS presents to public health officials and policymakers. What steps can be taken which will not only protect society at large, but also safeguard the privacy and civil liberties of individuals? The author ably traces the political history of AIDS. He suggests a responsible but nonauthoritarian approach, combining education; health care access for IV users; promotion of anonymous, confidential screening; defense of victims' rights; appropriate contact notification programs; and moderate laws protecting society from malicious individuals. This work is well-documented and cogently argued. Highly recommended for all academic collections and larger public libraries.
Bayer, staff member of a policy studies center in New York State, here reviews the record of public agencies in dealing with AIDS-created biological, social and political problems, including resolution of conflicts between privacy and the public good. He notes the contradiction between Centers for Disease Control recommendations of counseling, education and broad-scale voluntary testing of all Americans at risk, and federal policies that favor mandatory testing of the military, marriage applicants, hospital workers, patients and prostitutes, among others, and quarantine of AIDS carriers advocated by some states. Bayer recommends restraint by individuals in sexual matters and drug use, accompanied by an assault on the economic and social problems that underlie the epidemic, especially as regards the newborn and teenagers. In the growing body of AIDS literature, this is a valuable fact-finding study that should interest a lay as well as professional audience.
From Library Journal
Bayer's topic is the politically charged dilemma AIDS presents to public health officials and policymakers. What steps can be taken which will not only protect society at large, but also safeguard the privacy and civil liberties of individuals? The author ably traces the political history of AIDS. He suggests a responsible but nonauthoritarian approach, combining education; health care access for IV users; promotion of anonymous, confidential screening; defense of victims' rights; appropriate contact notification programs; and moderate laws protecting society from malicious individuals. This work is well-documented and cogently argued. Highly recommended for all academic collections and larger public libraries.
[more]
Private Choices and Public Health
The AIDS Epidemic in an Economic Perspective
Tomas Philipson and Richard A. Posner
Harvard University Press, 1993
Like other dangerous but pleasurable activities, such as downhill skiing and mountain climbing, engaging in unprotected sex implicitly involves the weighing of costs and benefits. Recognizing that the transmission of the AIDS virus is a consequence of private choices—rational and often informed—to engage in risky conduct, the authors employ tools of economic analysis to reassess the orthodox approach to AIDS by the public health community.
Standard predictions of the spread of AIDS, the authors argue, are questionable because they ignore rational behavioral response to the risk of infection. For the same reason, customary recommended public health measures, such as extensive testing for the AIDS virus, not only may be ineffective in controlling the spread of the disease but may actually cause it to spread more rapidly. The authors examine regulatory measures and proposals such as mandatory testing, criminal punishments, and immigration controls, as well as the subsidization of AIDS education and medical research, the social and fiscal costs of AIDS, the political economy of the government's response, and the interrelation of AIDS and fertility risk.
Neither liberal nor conservative, yet on the whole skeptical about governmental involvement in the epidemic, this book is certain to be controversial, but its injection of hard-headed economic thinking into the AIDS debate is long overdue. Although Private Choices and Public Health is accessible to the interested general reader, it will also capture the attention of economists—especially those involved in health issues—epidemiologists, public health workers, lawyers, and specialists in sexual behavior and drug addiction.
[more]
The Quiet Hero
A Life of Ryan White
Nelson Price
Indiana Historical Society Press, 2015
In 1985 the eyes of the world turned to the Hoosier State and the attempt by a thirteen-year-old Kokomo, Indiana, teenager to do what seemed to be a simple task—join his fellow classmates at Western Middle School in Russiaville, the school to which his Kokomo neighborhood was assigned. The teenager, Ryan White, however, had been diagnosed with Acquired Immune Deficiency Syndrome from contaminated blood-based products used to treat his hemophilia. “It was my decision,” White said, “to live a normal life, go to school, be with friends, and enjoying day to day activities. It was not going to be easy.”
White's words were an understatement, to say the least. His wish to return to school was met with panic by parents and some school officials. The controversy about White and the quiet courage he and his mother, Jeanne, displayed in their battle to have him join his classmates is explored in the eleventh volume in the Indiana Historical Society Press’s Youth Biography Series. The Quiet Hero is written by Nelson Price, who wrote about White’s odyssey during his days as a reporter and columnist for the Indianapolis News. Price goes behind the scenes and brings to light stories and individuals who might have been lost in the media spotlight.
After a nine-month court battle, White won the right to return to school, but with concessions. These were not enough for parents of twenty children, who responded by starting their own school. At school, White became the target of slurs and lies, and his locker was vandalized. Although the White family received support from citizens and celebrities around the world, particularly rock singer Elton John, the situation grew so controversial in Kokomo that they moved to Cicero, Indiana—a community that greeted them much differently.
In Price’s book, White, who succumbed to his disease in 1990, comes across as a normal teenager who met an impossible situation with uncommon grace, courage, and wisdom. “It was difficult at times, to handle; but I tried to ignore the injustice, because I knew the people were wrong,” White said. “My family and I held no hatred for those people because we realized they were victims of their own ignorance.”
[more]
The Republic of Therapy
Triage and Sovereignty in West Africa’s Time of AIDS
Vinh-Kim Nguyen
Duke University Press, 2010
The Republic of Therapy tells the story of the global response to the HIV epidemic from the perspective of community organizers, activists, and people living with HIV in West Africa. Drawing on his experiences as a physician and anthropologist in Burkina Faso and Côte d’Ivoire, Vinh-Kim Nguyen focuses on the period between 1994, when effective antiretroviral treatments for HIV were discovered, and 2000, when the global health community acknowledged a right to treatment, making the drugs more available. During the intervening years, when antiretrovirals were scarce in Africa, triage decisions were made determining who would receive lifesaving treatment. Nguyen explains how those decisions altered social relations in West Africa. In 1994, anxious to “break the silence” and “put a face to the epidemic,” international agencies unwittingly created a market in which stories about being HIV positive could be bartered for access to limited medical resources. Being able to talk about oneself became a matter of life or death. Tracing the cultural and political logic of triage back to colonial classification systems, Nguyen shows how it persists in contemporary attempts to design, fund, and implement mass treatment programs in the developing world. He argues that as an enactment of decisions about who may live, triage constitutes a partial, mobile form of sovereignty: what might be called therapeutic sovereignty.
[more]
Risky Rhetoric
AIDS and the Cultural Practices of HIV Testing
J. Blake Scott
Southern Illinois University Press, 2003
Risky Rhetoric: AIDS and the Cultural Practices of HIV Testing is the first book-length study of the rhetoric inherent in and surrounding HIV testing. In addition to providing a history of HIV testing in the United States from 1985 to the present, J. Blake Scott explains how faulty arguments about testing’s power and effects have promoted unresponsive and even dangerous testing practices for so-called healthy subjects as well as those deemed risky.A new afterword to the paperback edition discusses changes in testing technology, treatments, and public health responses in the last ten years. The ultimate goal of Risky Rhetoric is to offer strategies to policy makers, HIV educators and test counselors, and other rhetors for developing more responsive and egalitarian testing-related rhetorics and practices.
[more]
Saturday Is for Funerals
Unity Dow and Max Essex
Harvard University Press, 2011
In the year 2000 the World Health Organization estimated that 85 percent of fifteen-year-olds in Botswana would eventually die of AIDS. In Saturday Is for Funerals we learn why that won’t happen.
Unity Dow and Max Essex tell the true story of lives ravaged by AIDS—of orphans, bereaved parents, and widows; of families who devote most Saturdays to the burial of relatives and friends. We witness the actions of community leaders, medical professionals, research scientists, and educators of all types to see how an unprecedented epidemic of death and destruction is being stopped in its tracks.
This book describes how a country responded in a time of crisis. In the true-life stories of loss and quiet heroism, activism and scientific initiatives, we learn of new techniques that dramatically reduce rates of transmission from mother to child, new therapies that can save lives of many infected with AIDS, and intricate knowledge about the spread of HIV, as well as issues of confidentiality, distributive justice, and human rights. The experiences of Botswana offer practical lessons along with the critical element of hope.
[more]
Second Chances
Surviving AIDS in Uganda
Susan Reynolds Whyte, editor
Duke University Press, 2014
During the first decade of this millennium, many thousands of people in Uganda who otherwise would have died from AIDS got second chances at life. A massive global health intervention, the scaling up of antiretroviral therapy (ART), saved them and created a generation of people who learned to live with treatment. As clients they joined programs that offered free antiretroviral medicine and encouraged "positive living." Because ART is not a cure but a lifelong treatment regime, its consequences are far-reaching for society, families, and individuals. Drawing on personal accounts and a broad knowledge of Ugandan culture and history, the essays in this collection explore ART from the perspective of those who received second chances. Their concerns about treatment, partners, children, work, food, and bodies reveal the essential sociality of Ugandan life. The collection is based on research undertaken by a team of social scientists including both Western and African scholars.
Contributors. Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne O. Mogensen, Godfrey Etyang Siu, Jenipher Twebaze, Michael A. Whyte, Susan Reynolds Whyte
Contributors. Phoebe Kajubi, David Kyaddondo, Lotte Meinert, Hanne O. Mogensen, Godfrey Etyang Siu, Jenipher Twebaze, Michael A. Whyte, Susan Reynolds Whyte
[more]
Shattered Mirrors
Our Search for Identity and Community in the AIDS Era
Monroe E. Price
Harvard University Press, 1989
The AIDS epidemic has touched the lives of all Americans. An entire generation has been forced to redefine the way it looks at intimacy. Our very images of ourselves are being altered in the wake of this tragic illness. Yet we are only now beginning to discover the true extent of the change AIDS has wrought on American society. This massive challenge to public health is creating a fault line beneath our institutions, threatening to undermine much that we have taken for granted about the pillars of our culture. Looking out across the landscape of AIDS, we sense a fundamental shift in the way we think about ourselves, about others, and about government.
Shattered Mirrors is a deeply moving meditation on the impact AIDS is having on American consciousness. AIDS has become a moral lesson for our nation, Monroe Price argues, but not the narrow lesson about the dangers of deviancy that certain segments of society have professed. The AIDS epidemic challenges some of our most cherished ideas about individual autonomy, free expression, fairness, and confidence in the future. As this book points out, the ultimate legacy of the AIDS epidemic is far more than its terrible impact on the health of the citizenry.
As the disease grinds on, several traditional barriers between church and state, government and the media, citizen and consumer have begun to erode, while other barriers of class, race, and lifestyle are growing larger. It is too early to say whether these and similar changes will be permanent, but as long as there is uncertainty about how devastating AIDS will prove to be to our society, we will continue to debate its meaning and how we should respond to the threat it poses to all of us. In the long run, Price maintains, AIDS may force us to reexamine the role government should play in shaping our personal lives. More than this, it may well oblige us to redefine what we mean by identity and community in a democracy under siege.
[more]
Structural Intimacies
Sexual Stories in the Black AIDS Epidemic
Mackenzie, Sonja
Rutgers University Press, 2013
One of the most relevant social problems in contemporary American life is the continuing HIV epidemic in the Black population. With vivid ethnographic detail, this book brings together scholarship on the structural dimensions of the AIDS epidemic and the social construction of sexuality to assert that shifting forms of sexual stories—structural intimacies—are emerging, produced by the meeting of intimate lives and social structural patterns. These stories render such inequalities as racism, poverty, gender power disparities, sexual stigma, and discrimination as central not just to the dramatic, disproportionate spread of HIV in Black communities in the United States, but to the formation of Black sexualities.
Sonja Mackenzie elegantly argues that structural vulnerability is felt—quite literally—in the blood, in the possibilities and constraints on sexual lives, and in the rhetorics of their telling. The circulation of structural intimacies in daily life and in the political domain reflects possibilities for seeking what Mackenzie calls intimate justice at the nexus of cultural, economic, political, and moral spheres. Structural Intimacies presents a compelling case: in an era of deepening medicalization of HIV/AIDS, public health must move beyond individual-level interventions to community-level health equity frames and policy changes
Sonja Mackenzie elegantly argues that structural vulnerability is felt—quite literally—in the blood, in the possibilities and constraints on sexual lives, and in the rhetorics of their telling. The circulation of structural intimacies in daily life and in the political domain reflects possibilities for seeking what Mackenzie calls intimate justice at the nexus of cultural, economic, political, and moral spheres. Structural Intimacies presents a compelling case: in an era of deepening medicalization of HIV/AIDS, public health must move beyond individual-level interventions to community-level health equity frames and policy changes
[more]
Taking Aim
Target Populations and the Wars on AIDS and Drugs
Mark C. Donovan
Georgetown University Press, 2001
As elected lawmakers confront complex social problems, they inevitably make choices to single out certain populations for government-sanctioned benefits or burdens. Why some groups and not others are targeted is the central question explored in this analysis of the congressional response to two related public health crises.
Weaving case studies from the wars against AIDS and drugs with an empirical analysis of fifteen years of congressional action on these issues, Mark Donovan shows how members of Congress balance problem solving with re-election concerns, paying particular attention to their need to craft compelling rationales for their actions. His analysis shows that, counterintuitive as it may seem, most target populations with negative public images are selected to receive benefits rather than burdens.
Demonstrating that it is possible to analyze simultaneously both policy rhetoric and policy outputs, this book shows how problem frames and policy decisions evolve through the dynamic interplay of conflict participants.
[more]
Treating AIDS
Politics of Difference, Paradox of Prevention
Sangaramoorthy, Thurka
Rutgers University Press, 2014
There is an inherently powerful and complex paradox underlying HIV/AIDS prevention—between the focus on collective advocacy mobilized to combat global HIV/AIDS and the staggeringly disproportionate rates of HIV/AIDS in many places. In Treating AIDS, Thurka Sangaramoorthy examines the everyday practices of HIV/AIDS prevention in the United States from the perspective of AIDS experts and Haitian immigrants in South Florida. Although there is worldwide emphasis on the universality of HIV/AIDS as a social, political, economic, and biomedical problem, developments in HIV/AIDS prevention are rooted in and focused exclusively on disparities in HIV/AIDS morbidity and mortality framed through the rubric of race, ethnicity, and nationality. Everyone is at equal risk for contracting HIV/AIDS, Sangaramoorthy notes, but the ways in which people experience and manage that risk—and the disease itself—is highly dependent on race, ethnic identity, sexuality, gender, immigration status, and other notions of “difference.”
Sangaramoorthy documents in detail the work of AIDS prevention programs and their effect on the health and well-being of Haitians, a transnational community long plagued by the stigma of being stereotyped in public discourse as disease carriers. By tracing the ways in which public knowledge of AIDS prevention science circulates from sites of surveillance and regulation, to various clinics and hospitals, to the social worlds embraced by this immigrant community, she ultimately demonstrates the ways in which AIDS prevention programs help to reinforce categories of individual and collective difference, and how they continue to sustain the persistent and pernicious idea of race and ethnicity as risk factors for the disease.
Sangaramoorthy documents in detail the work of AIDS prevention programs and their effect on the health and well-being of Haitians, a transnational community long plagued by the stigma of being stereotyped in public discourse as disease carriers. By tracing the ways in which public knowledge of AIDS prevention science circulates from sites of surveillance and regulation, to various clinics and hospitals, to the social worlds embraced by this immigrant community, she ultimately demonstrates the ways in which AIDS prevention programs help to reinforce categories of individual and collective difference, and how they continue to sustain the persistent and pernicious idea of race and ethnicity as risk factors for the disease.
[more]
Unbecoming
Eric Michaels
Duke University Press, 1997
In 1982, the American-born anthropologist Eric Michaels went to Australia to research the impact of television on remote aboriginal communities. Over the next five years, until his death, he became a major intellectual presence in Australia. Unbecoming is Michaels’s gritty, provocative, and intellectually powerful account of living with AIDS—a chronicle of the last year of his life as he became increasingly ill. Michaels’s diary offers a forceful and ironic rumination on the cultural phenomenon of AIDS, how it relates to his concerns as both an anthropologist and a gay man, and the failure of medical and governmental institutions to come to terms with the disease. Like the AIDS testimony of artist David Wojnarowicz and filmmaker Derek Jarman, Unbecoming provides a view of the AIDS epidemic from a distinctly new vantage point.
[more]
Unstable Frontiers
Technomedicine and the Cultural Politics of “Curing” AIDS
John Nguyet Erni
University of Minnesota Press, 1994
Unstable Frontiers was first published in 1994. Minnesota Archive Editions uses digital technology to make long-unavailable books once again accessible, and are published unaltered from the original University of Minnesota Press editions.
"John Erni's heartfelt and insightful book is a valuable contribution to the study of the cultural politics of AIDS."–Jeff Nunokawa Princeton University
The "cure" for AIDS: The search goes on, keeping pace with our belief that AIDS is incurable. How such a seeming paradox works-and how it may well work against the proper treatment of the disease-is the subject of Unstable Frontiers, a probing, critical look at the cultural politics behind the quest for a cure for AIDS.
This massive commercial and scientific project, John Erni suggests, actually hinges on our contradictory definitions of the disease as curable and incurable at the same time. Drawing on diverse sources, from popular media to medical literature to cultural theory, he shows how the dual discourse of curability/incurability frames the way we think about and act on issues of medical treatment for AIDS. His work makes a major advance in our understanding of—and, perhaps, humane response to—a national crisis.
In his critique of the logic and fantasies underlying the double definition of AIDS, Erni explores a broad range of issues: the scientific paradigm used to develop AZT; the politics of alternative treatment practices, of clinical drug trials, and of AIDS activism; and the notions of time and temporality operating in AIDS treatment science. He also addresses the problematic popular themes, such as "AIDS is invariably fatal" and "Knowledge = Cure."
Unique in its approach to a social and political issue still in the making, the book reveals how AIDS has challenged technomedicine's historical position of authority-and in doing so, recasts this challenge in a powerful and ultimately hopeful way.
John Nguyet Erni is assistant professor of communication at the University of New Hampshire. He has published essays on AIDS and is currently working on a book about AIDS in Thailand.
[more]
Untimely Interventions
AIDS Writing, Testimonial, and the Rhetoric of Haunting
Ross Chambers
University of Michigan Press, 2004
As atrocity has become characteristic of modern history, testimonial writing has become a major twentieth-century genre. Untimely Interventions relates testimonial writing, or witnessing, to the cultural situation of aftermath, exploring ways in which a culture can be haunted by its own history.
Ross Chambers argues that culture produces itself as civilized by denying the forms of collective violence and other traumatic experience that it cannot control. In the context of such denial, personal accounts of collective disaster can function as a form of counter-denial. By investigating a range of writing on AIDS, the First World War, and the Holocaust, Chambers shows how such writing produces a rhetorical effect of haunting, as it seeks to describe the reality of those experiences culture renders unspeakable.
Ross Chambers is Professor of Romance Languages at the University of Michigan. His other books includeFacing It: AIDS Diaries and the Death of the Author.
[more]
Victory Deferred
How AIDS Changed Gay Life in America
John-Manuel Andriote
University of Chicago Press, 1999
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
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
[more]
Viral Cultures
Activist Archiving in the Age of AIDS
Marika Cifor
University of Minnesota Press, 2022
Delves deep into the archives that keep the history and work of AIDS activism alive
Serving as a vital supplement to the existing scholarship on AIDS activism of the 1980s and 1990s, ViralCultures is the first book to critically examine the archives that have helped preserve and create the legacy of those radical activities. Marika Cifor charts the efforts activists, archivists, and curators have made to document the work of AIDS activism in the United States and the infrastructure developed to maintain it, safeguarding the material for future generations to remember these social movements and to revitalize the epidemic’s past in order to remake the present and future of AIDS.
Drawing on large institutional archives such as the New York Public Library, as well as those developed by small, community-based organizations, this work of archival ethnography details how contemporary activists, artists, and curators use these records to build on the cultural legacy of AIDS activism to challenge the conditions of injustice that continue to undergird current AIDS crises. Cifor analyzes the various power structures through which these archives are mediated, demonstrating how ideology shapes the nature of archival material and how it is accessed and used. Positioning vital nostalgia as both a critical faculty and a generative practice, this book explores the act of saving this activist past and reanimating it in the digital age.
While many books, popular films, and major exhibitions have contributed to a necessary awareness of HIV and AIDS activism, Viral Cultures provides a crucial missing link by highlighting the powerful role of archives in making those cultural moments possible.
[more]
Viral Frictions
Global Health and the Persistence of HIV Stigma in Kenya
Elizabeth J. Pfeiffer
Rutgers University Press, 2022
Viral Frictions takes the reader along a trail of intersecting narratives to uncover how and why it is that HIV-related stigma persists in the age of treatment. Pfeiffer convincingly argues that stigma is a socially constructed process co-produced at the nexus of local, national, and global relationships and storytelling about and practices associated with HIV. Based on a decade of fieldwork in one highway trading center in Kenya, Viral Frictions offers compelling stories of stigma and discrimination as a lens for understanding broader social processes, the complexities of globalization and health, and their profound impact on the everyday social lives and relationships of people living through the ongoing HIV epidemic in sub-Saharan Africa. This highly engaging book is ideal reading for those interested in teaching and learning about intersectionality, as Pfeiffer meticulously demonstrates how HIV stigma interacts with issues of treatment, race, ethnicity, class, gender, sexuality, social change, and international aid systems.
[more]
We Are Having This Conversation Now
The Times of AIDS Cultural Production
Alexandra Juhasz and Theodore Kerr
Duke University Press, 2022
We Are Having This Conversation Now offers a history, present, and future of AIDS through thirteen short conversations between Alexandra Juhasz and Theodore Kerr, scholars deeply embedded in HIV responses. They establish multiple timelines of the epidemic, offering six foundational periodizations of AIDS culture, tracing how attention to the crisis has waxed and waned from the 1980s to the present. They begin the book with a 1990 educational video produced by a Black health collective, using it to consider organizing intersectionally, theories of videotape, empowerment movements, and memorialization. This video is one of many powerful yet overlooked objects that the pair focus on through conversation to understand HIV across time. Along the way, they share their own artwork, activism, and stories of the epidemic. Their conversations illuminate the vital role personal experience, community, cultural production, and connection play in the creation of AIDS-related knowledge, archives, and social change. Throughout, Juhasz and Kerr invite readers to reflect and find ways to engage in their own AIDS-related culture and conversation.
[more]
Whose Agency
The Politics and Practice of Kenya's HIV-Prevention NGOs
Megan Hershey
University of Wisconsin Press, 2019
Nongovernmental organizations (NGOs) are ubiquitous in the Global South. Often international in origin, many attempt to assist local efforts to improve the lives of people often living in or near poverty. Yet their external origins often cloud their ability to impact health or quality of life, regardless of whether volunteers are local or foreign.
By focusing on one particular type of NGO—those organized to help prevent the spread and transmission of HIV in Kenya—Megan Hershey interrogates the ways these organizations achieve (or fail to achieve) their planned outcomes. Along the way, she examines the slippery slope that is often used to define “success” based on meeting donor-set goals versus locally identified needs. She also explores the complex network of bureaucratic requirements at both the national and local levels that affect the delicate relationships NGOs have with the state. Drawing on extensive, original quantitative and qualitative research, Whose Agency serves as a much-needed case study for understanding the strengths and shortcomings of participatory development and community engagement.
By focusing on one particular type of NGO—those organized to help prevent the spread and transmission of HIV in Kenya—Megan Hershey interrogates the ways these organizations achieve (or fail to achieve) their planned outcomes. Along the way, she examines the slippery slope that is often used to define “success” based on meeting donor-set goals versus locally identified needs. She also explores the complex network of bureaucratic requirements at both the national and local levels that affect the delicate relationships NGOs have with the state. Drawing on extensive, original quantitative and qualitative research, Whose Agency serves as a much-needed case study for understanding the strengths and shortcomings of participatory development and community engagement.
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'You're the First One I've Told'
New Faces of HIV in the South
Whetten-Goldstein, Kathryn
Rutgers University Press, 2002
In the second wave of the HIV epidemic, those with the disease are more likely to be female, young, heterosexual, a racial minority, and rural-living than in the past. An understanding of the vastly different lives of this second wave of HIV-infected persons is vital to the development of user-friendly health care systems.
"You're the First One I've Told" offers a view into the lives of men and women infected with HIV. The experiences of twenty-five people living with this disease in rural eastern North Carolina serve as the foundation of this book, which also draws upon unique HIV/AIDS survey data collected by the authors and statistics from the Southeastern United States. This combination of qualitative and quantitative information provides readers with a vivid description of how people live with HIV/AIDS in the midst of their often traumatic lives, and why they manage their illness in ways that seem to contradict mainstream medical and social wisdom. The people interviewed represent a variety of races, genders, professions, family lives, and medical and social service access and utilization.
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You're the First One I've Told
The Faces of HIV in the Deep South
Whetten-Goldstein, Kathryn
Rutgers University Press, 2013
The Deep South has seen a 36 percent increase in AIDS cases while the rest of the nation has seen a 2 percent decline. Many of the underlying reasons for the disease’s continued spread in the region—ignorance about HIV, reluctance to get tested, non-adherence to treatment protocols, resistance to behavioral changes—remain unaddressed by policymakers.
In this extensively revised second edition, Kathryn Whetten and Brian Wells Pence present a rich discussion of twenty-five ethnographic life stories of people living with HIV in the South. Most importantly, they incorporate research from their recent quantitative study, “Coping with HIV/AIDS in the Southeast” (CHASE), which includes 611 HIV-positive patients from North Carolina, South Carolina, Georgia, Alabama, and Louisiana. This new edition continues to bring the participants’ voices to life while highlighting how the CHASE study confirmed many of the themes that originally emerged from the life histories. This is the first cohesive compilation of up-to-date evidence on the unique and difficult aspects of living with HIV in the Deep South.
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