front cover of Children as Caregivers
Children as Caregivers
The Global Fight against Tuberculosis and HIV in Zambia
Hunleth, Jean
Rutgers University Press, 2017
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front cover of Criminalized Lives
Criminalized Lives
HIV and Legal Violence
Alexander McClelland
Rutgers University Press, 2024
Canada has been known as a hot spot for HIV criminalization where the act of not disclosing one’s HIV-positive status to sex partners has historically been regarded as a serious criminal offence. Criminalized Lives describes how this approach has disproportionately harmed the poor, Black and Indigenous people, gay men, and women in Canada. In this book, people who have been criminally accused of not disclosing their HIV-positive status, detail the many complexities of disclosure, and the violence that results from being criminalized. 
 
Accompanied by portraits from artist Eric Kostiuk Williams, the profiles examine whether the criminal legal system is really prepared to handle the nuances and ethical dilemmas faced everyday by people living with HIV. By offering personal stories of people who have faced criminalization first-hand, Alexander McClelland questions common assumptions about HIV, the role of punishment, and the violence that results from the criminal legal system’s legacy of categorizing people as either victims or perpetrators. 
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front cover of Crying for Our Elders
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.
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front cover of Fault Lines of Care
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.  
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front cover of Landscapes of Activism
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.
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front cover of The Political Economy of Stigma
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.
 
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front cover of United by AIDS
United by AIDS
An Anthology on Art in Response to HIV/AIDS
Edited by Raphael Gygax and Heike Munder
Scheidegger and Spiess, 2019
The appearance of HIV/AIDS in the early 1980s and its subsequent rapid spread left deep marks on society. Artists and activists across the world responded to both the illness itself and its effects with moving work that reflects on loss, remembrance, and activism in art.

United by AIDS sheds light on the multifaceted and complex interrelation between art and HIV/AIDS from the 1980s to the present. Published to accompany an exhibition at Zurich’s Migros Museum of Contemporary Art, it looks at the blurred lines between art production and HIV/AIDS activism and showcases artists who played—and still play—leading roles in this discourse. Alongside fifty illustrations of important works, including many in color, the book includes brief texts on the featured artists and essays by Douglas Crimp, Alexander García Düttmann, Raphael Gygax, Elsa Himmer, Ted Kerr, Elisabeth Lebovici, and Nurja Ritter.
 
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front cover of 'You're the First One I've Told'
'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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front cover of You're the First One I've Told
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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