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Overview
An ethnographic portrait of HIV-positive black women and their interaction with the U.S. healthcare system, Holding On reveals how gradients of poverty and social difference shape women's health care outcomes and, by extension, women's experience of health policy reform. Set among the realities of poverty, addiction, incarceration, and mental illness, the case studies in Holding On illustrate how subtle details of daily life affect health and how overlooking them when formulating public health policy has fostered social inequality anew and undermined health in a variety of ways.
Alyson O'Daniel is an assistant professor of anthropology at the University of Indianapolis. Her work has appeared in Transforming Anthropology and Medical Anthropology: Cross Cultural Studies in Health and Illness.
Product Details
| ISBN-13: | 9780803269613 |
|---|---|
| Publisher: | Nebraska |
| Publication date: | 06/01/2016 |
| Series: | Anthropology of Contemporary North America |
| Edition description: | New Edition |
| Pages: | 264 |
| Product dimensions: | 5.90(w) x 8.90(h) x 0.80(d) |
About the Author
Alyson O’Daniel is an assistant professor of anthropology at the University of Indianapolis. Her work has appeared in Transforming Anthropology and Medical Anthropology: Cross Cultural Studies in Health and Illness.
Read an Excerpt
Holding On
African American Women Surviving HIV/AIDS
By Alyson O'Daniel
UNIVERSITY OF NEBRASKA PRESS
Copyright © 2016 Board of Regents of the University of NebraskaAll rights reserved.
ISBN: 978-0-8032-8840-9
CHAPTER 1
"Other" Stories of Social Policy and HIV Survival
If you go back to the history of what [the Ryan White CARE Act] was even based on, go back to the name — "Comprehensive AIDS Resources Emergency Act." It was for an emergency. It wasn't planned on being a thirty-year infrastructure-building project. It was designed to be a "oh crap, we got a crisis. What do we do for these people that are dying and are all going to die?" So start with that as your premise, and you can see how we've come to this problem.
Jeremy, Health Partnership executive director
In the summer of 2012 I met with Jeremy, the recently appointed executive director of Health Partnership. I had come to visit Jeremy on this day largely as a formality. I had returned to Midway, North Carolina, in hopes of reconnecting with several women with whom I'd previously worked. I had already spoken with a few service providers from the agency and felt I understood the latest changes to organizational policy and services provision. Still I thought it appropriate to reconnect with agency administrative officers, especially given that my last conversations with Jeremy were prior to his appointment as executive director.
Jeremy had long been involved with the organization as the director of development. Many times I had observed his leadership skills at high-dollar fund-raisers held to solicit donations from local middle- and upper-class allies of the HIV/AIDS community. I'd also occasionally witnessed his humorous performances as an emcee for the agency's monthly Drag Queen Bingo fund-raiser. I knew through my observations at these and other events that he was a remarkable and passionate advocate for people living with HIV/AIDS. I also knew he had an impressive grasp of the policy changes and advocacy initiatives characterizing the state's public health response to the epidemic, for our few informal conversations in years past had centered on local advocacy initiatives related to HIV/AIDS. What I had yet to discuss with him, however, was his personal experience with HIV survival as an HIV-positive gay man who came of age in the late 1980s and as an active participant in the national political processes circumscribing federal care programming. Throughout our talk that day, he heatedly recalled political battles concerning HIV/AIDS programs, taking care to pay his respects to contemporary HIV/AIDS legislative policy architects and allies such as Ted Kennedy, Hillary Clinton, and Alabama senator Richard Burr. Citing several instances where continued support for federal programmatic services was in question, Jeremy framed nationwide systems of care as a "built environment" that he had personally helped to design and implement. He specifically iterated, however, that the whole idea of federally funded HIV/AIDS care had been "developed on the back of thousands and thousands of people who have died — those who didn't survive long enough to see our government do right." Vividly portraying his sense of personal investment and the "noise" he had helped make concerning a historical lack of HIV/AIDS resources in the South, Jeremy emphasized his emotional and intellectual connections to Health Partnership. As a lobbyist, as a service organization employee, as a consumer of HIV/AIDS care, and as a human being (his emphasis), Jeremy was committed to "speaking for those who are afraid to speak or even survive this disease because of the stigma." I was especially surprised when, near the end of our discussion, he disclosed that he was leaving the agency in search of another advocacy opportunity. The political contests circumscribing federally funded care, it seemed, had become as of late too difficult for this advocate to navigate from inside Health Partnership.
HIV/AIDS care has long been a political battlefield, in part because of its articulation with controversies, rules, and "universes of discourse" associated with broader American political and economic inequalities (Treichler 1999, 10). HIV/AIDS care, in other words, is not just about treatment and prevention of a biological disease state; it also represents a site through which the American people, institutions, and legislators enact beliefs and practices concerning social responsibility and "which kinds of lives society will support" (Geertz 2000, 93). Put simply HIV/AIDS care is a socially constructed practice that, when analyzed in relation to broader social trends and discourses, can tell us about the workings of power in contemporary America. Illuminating processes of power in this context, however, requires us to look beyond what we think we know about it. As Treichler (1999, 15) explains, "Our social constructions of AIDS ... are not based on objective, scientifically determined 'reality' but on what we are told about this reality."
This chapter examines changes in federal HIV/AIDS care legislation at specific moments along the trajectory of the epidemic. I connect changes in HIV/AIDS programming to conditions associated with the U.S. transition to a market-based model of governance, bringing into view the ideologies, policies, and practices broadly shaping women's experiences of HIV/AIDS care and survival with HIV disease. I therefore suspend the federal government's characterization of the U.S. HIV/AIDS treatment apparatus as a "modern public health miracle" with a "legacy of care" to consider what remains hidden when understandings of HIV-related programmatic services are narrowed to the fiscal and enumerative terms so often the focus of public discussion concerning medically indigent populations (Health Resources and Services Administration [HRSA] 2010, 3). Recognizing that the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is indeed a costly and, in many ways, highly effective public health intervention, I nevertheless consider ways in which the act has come to be entangled with questions of social belonging and historically given dynamics of racism and gender inequality. Within this exploration, I pay particular attention to how welfare reform and discourses of deservedness have subtly shaped HIV-related connotations and use of "survival," a public health concept seldom interrogated as "socially productive" in the sense that it has engendered particular forms of sociality (Comaroff 2007, 203). Survival becomes clearer as a contextually specific social construction when examined in relation to U.S. welfare reform and racialized discourses of productivity and citizenship fueling popular support of efforts to retrench antipoverty programmatic services. Such a perspective spotlights that while federal HIV/AIDS care programs may be lauded for providing crucial supports for some of the most vulnerable members of American society, they may be also critically evaluated for their role in reproducing preexisting racial and gender inequities and health care inequality.
The Early Years: Ryan White CARE Act Legislation
U.S. HIV/AIDS care programs have been largely omitted from conversations concerning the effects of global neoliberalism (for exceptions, see Farmer, Connors, and Simmons 1996 and Susser 2009). They have also been largely excluded from analyses of U.S. Department of Health and Human Services (USDHHS) policy reform (O'Daniel 2009). This is perhaps because U.S. HIV/AIDS care programs are increasingly well funded by the Ryan White CARE Act, whereas the general trend has been toward disinvestment from other social services. However, close examination of HIV-related programming and policy makes clear that federal HIV/AIDS care has indeed been aligned, in many ways, with market-friendly values and practices.
The Ryan White CARE Act is a federal funding mechanism specifically designed for comprehensive management of the epidemic among impoverished and medically underserved populations in the United States. It was enacted in 1990 to address the health care needs of people infected with the human immunodeficiency virus. The act represents the culmination of relentless activist struggle and sustained community mobilization over the course of a decade wrought with fear, grief, anger, and perseverance (Aggleton, Davies, and Hart 1997; Epstein 1996; Speretta and McAlpin 2014). Gaining federal support for HIV/AIDS care programming was a hard-won victory that the George H. W. Bush administration initially opposed because of its focus on a single disease and the precedent that disease-specific support might set for other public health populations (HRSA 2014a). Opposition also came from many other politicians and countless Americans who had denied and/or learned about HIV/AIDS via little media coverage and, in later years, inaccurate and sensational media reporting (Epstein 1996; Shilts 1987; Treichler 1999). To put it bluntly, for many, federal support for HIV/AIDS care constituted an unwelcome investment in socially marginalized and stigmatized populations (Cohen 1999; Treichler 1999).
In the early 1980s the association of HIV/AIDS with marginalized subpopulations of people paved the way for the construction of misleading (and moralizing) public health HIV/AIDS "risk groups": hemophiliacs, homosexuals, heroin users, and Haitians (Treichler 1999). The association of HIV/AIDS with specific populations of people, rather than in terms of conditions of risk, articulated with predominant social sensibilities and popular morality in troubling ways. The "risk group mentality" and the static social identities it presupposed had the disastrous effect of obscuring HIV infection in women, children, and heterosexual men (Farmer, Connors, and Simmons 1996; Ward 1993). It also misled the public about structural conditions of HIV infection and divorced public conversations concerning the epidemic from its sociopolitical and economic context (Rodriguez 1997; Act Up/NY Women and AIDS Book Group 1990; Susser 2009). This had the effect of rendering growing infection rates among women of color as invisible while isolating HIV-positive gay men as the problem with which the American public had to contend (Goldstein 1997). Homophobia, racism, and elitism, combined with denial and a general lack of knowledge concerning HIV transmission, led many health experts, mainstream news outlets, and the general American public to project their worst fears onto those living with HIV disease. HIV/AIDS quickly became known as a disease of the "other"; it was a disease belonging to "a community of pariahs" (Sontag 1990, 113). Thus HIV/AIDS was feared for its inevitably fatal medical prognosis as well as the social marginality that its diagnosis implied. People who shared needles and/or engaged in anal sex and unprotected sex — activities viewed as inherent to their presumably nonnormative lifestyle (Sontag 1990, 113) — were popularly believed to have "paid a fatal price" for their indiscretions (cited in Farmer 1996, 4). Risk of infection and the disease itself became synonymous with stigmatized behaviors of individuals and groups long considered as "the wretched of the earth" (Barnett and Whiteside 2002, 7). HIV-positive individuals were thus seen as blameworthy, or at fault for their disease and a rapidly accelerating epidemic.
In this context grassroots activists such as the Act Up/NY Women and AIDS Book Group and the Women and AIDS Resource Network began campaigns of self-empowerment, consciousness-raising, and self-advocacy. Self-identified "People with AIDS" claimed their right to be treated with dignity and respect, as well as their right to quality medical care and social services support (People with AIDS Advisory Committee 1983). The media-savvy campaign for rights included calls for attention to the politics and bureaucratic machinations of drug development and to public recognition of women's gender-specific vulnerabilities to infection (Gould 2009; Susser 2009).
The demands made on the medical community and the public writ large ultimately culminated in many productive research alliances. Qualitative health researchers such as Douglas Feldman, Nancy Stoller, Richard Parker, Paul Farmer, Paula Treichler, and Brooke Schoepf began exploring the role of social and political context in understanding HIV infection (see Farmer, Connors, and Simmons 1996 for an impressive review of early literature). Yet even amid growing attention to specific conditions of heterosexual transmission and infection among women, it wasn't until 1987 that U.S. News & World Report publicly broke the story that heterosexual individuals who abstain from illicit drug use were potentially at risk for infection too. The disease of the "other," in very specific ways, had finally become a disease of "us" (Farmer 1996, 4; Treichler 1999).
HIV/AIDS Affects Us All
By 1991 HIV/AIDS had become somewhat familiar to many Americans as "an equal opportunity disease" capable of crossing social boundaries of sexuality, nationality, race, class, and gender. At this time AIDS was the leading cause of death among women aged twenty-five to forty-four years in fifteen of the largest U.S. cities (Selik, Chu, and Buehler 1993). Reflecting the increased recognition of HIV in women and heterosexual men and a general sense of alarm about the possible spread of the virus into the American mainstream public, popular media began depicting "the face of AIDS" as heterosexual, female, and middle class (Treichler 1999). Ostensibly the veritable "we" of American culture and society were all at risk. A new kind of urgency fanned the flames of a by now long-standing activist struggle and the public discussion of HIV/AIDS. An intensifying epidemic, mounting activist pressure, and fears concerning the epidemic's future course provided the backdrop against which the Ryan White CARE Act would be adopted and implemented in the United States. Though its particular details were hotly debated in the House and the Senate, the CARE legislation had broad bipartisan support and passed by a wide margin in the Senate (HRSA 2014a).
The result was a public law providing "disaster assistance" for large urban areas hit hard by the epidemic (Institute of Medicine 2004). The first CARE Act grants were awarded in April 1991 and were administered to state governments and local agencies to fund the building of HIV-related administrative structures and support programs for people living with HIV/AIDS. In that first year CARE Act funding totaled $220.6 million (Institute of Medicine 2004). Including funds for emergency financial relief, end-of-life care, and early intervention, the overarching goal was to provide medical care and palliative and support services for people diagnosed with HIV/AIDS. Education, research, and outreach services were also funded as a means to contain the transmission of HIV. In other words, treatment was part of a prevention strategy.
A key provision in the original 1990 CARE Act legislation stipulated that money had to be dispersed among funding applicants in ways that ensured the money had the "greatest local impact possible" (HRSA 2014a). Thus in the act's early years, resources were spread between states, eligible metropolitan areas (EMAs), and health-related organizations for purposes of capacity-building and services development. Money was annually appropriated and distributed through a formula block grant that calculated funding levels using the number of reported AIDS cases relative to the total population in a given state or EMA (Institute of Medicine 2004). In other words, how much money a given state or EMA was eligible to receive depended on the local prevalence of AIDS. Using AIDS prevalence to determine funding eligibility had the effect of prioritizing states and EMAs with "mature" epidemics rather than areas with emerging epidemics because cases of HIV (not progressed to AIDS) were not counted in the formula (U.S. Congress 2000). In addition Ryan White money was stipulated as "the provider of last resort," meaning that individuals could utilize federally funded HIV/AIDS care programs only if they had no other source of support.
To further ensure the "greatest possible impact" clause in the Ryan White legislation, grant recipients were charged with establishing priorities for the allocation of any funds awarded for an upcoming fiscal year. It required in every case a procedure to obtain community input, whether through the creation of local planning councils or other means (HRSA 2014a). Many communities underwent an annual priority-setting and resource allocation process (for an example, see O'Daniel 2009), whereby HIV-positive individuals, care providers, volunteers, and health professionals worked together to allocate percentages of Ryan White dollars to the various service categories represented in their states and EMAs. This procedure enabled communities to distribute federal dollars prior to their being awarded and according to local needs, which were identified in part through personal experiences with service provision and reception.
(Continues...)
Excerpted from Holding On by Alyson O'Daniel. Copyright © 2016 Board of Regents of the University of Nebraska. Excerpted by permission of UNIVERSITY OF NEBRASKA PRESS.
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Table of Contents
List of Tables
Acknowledgments
Author’s Note
Introduction: Hidden in Plain Sight
1. "Other" Stories of Social Policy and hiv Survival
2. The Local Landscape of hiv/aids Care
3. Urban Poverty Three Ways
4. The Pedagogy of Policy Reform
5. Using "Survival" to Survive, Part I
6. Using "Survival" to Survive, Part II
Conclusion: Life beyond Survival
Appendix 1: Demographic Characteristics of Study Participants at Time of First Interview
Appendix 2: Study Participants’ Analytic Categories
Appendix 3: Glossary of Service Program Acronyms
Notes
References
Index