Remaking a Life: How Women Living with HIV/AIDS Confront Inequality

Remaking a Life: How Women Living with HIV/AIDS Confront Inequality

by Celeste Watkins-Hayes

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In the face of life-threatening news, how does our view of life change—and what do we do it transform it? Remaking a Life uses the HIV/AIDS epidemic as a lens to understand how women generate radical improvements in their social well being in the face of social stigma and economic disadvantage. Drawing on interviews with nationally recognized AIDS activists as well as over one hundred Chicago-based women living with HIV/AIDS, Celeste Watkins-Hayes takes readers on an uplifting journey through women’s transformative projects, a multidimensional process in which women shift their approach to their physical, social, economic, and political survival, thereby changing their viewpoint of “dying from” AIDS to “living with” it. With an eye towards improving the lives of women, Remaking a Life provides techniques to encourage private, nonprofit, and government agencies to successfully collaborate, and shares policy ideas with the hope of alleviating the injuries of inequality faced by those living with HIV/AIDS everyday.  

Product Details

ISBN-13: 9780520296039
Publisher: University of California Press
Publication date: 08/20/2019
Edition description: First Edition
Pages: 336
Sales rank: 571,632
Product dimensions: 5.90(w) x 8.90(h) x 0.90(d)

About the Author

Celeste Watkins-Hayes is Professor of Sociology and African American Studies, and Faculty Fellow at the Institute for Policy Research at Northwestern University. She is also the author of The New Welfare Bureaucrats: Entanglements of Race, Class, and Policy Reform.

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Dying From


Austin, Indiana, a rural city located about 80 miles south of Indianapolis, is home to approximately 4,200 people, 97 percent of whom are white. In January 2015, public health officials began investigating an outbreak of HIV that grew at an alarming rate, with 191 confirmed new cases by 2016. Women accounted for almost half of those diagnosed. The rise in new infections was traced to several factors, including an opiate abuse epidemic, poverty, and a weak local healthcare system. Austin's surrounding Scott County registered the highest per capita use of OxyContin in the state. High intravenous use of heroin and oxymorphone added to the crisis.

In 2015, approximately 6 percent (2,392) of the 39,513 HIV diagnoses in the United States were attributed to intravenous drug use. HIV can survive for up to 28 days in a syringe, and many public health officials have recommended needle-exchange programs as a scientifically validated method of preventing the spread of HIV and hepatitis. Such programs were, however, banned in Indiana, and the practice of sharing and reusing syringes was common in Austin. The IndyStar painted a grim picture: "Some users shoot up alongside their children or even their children's children. In the winter, as many as 20 users may huddle in a home, gathering in the one building that has heat for the day. The power of addiction is so great that even the sensation of a prick from an empty needle can bring relief."

Dire community conditions were both caused and accelerated by the twin epidemics of drug addiction and HIV. In 2015, Austin's median household income of $33,000 trailed the state's median of $48,000. While the statewide poverty rate was 15.9 percent, 26 percent of Austin's residents were living in poverty. Empty storefronts and boarded-up homes dotted the landscape. Austin's chief of police, Donald Spicer, included the city's "lack of opportunity, too few jobs, few resources, and few things to do" among the root causes of the city's drug epidemic. The state had slashed funding for public health in recent years and delayed expansion of its Medicaid program legislated by the Affordable Care Act. Moreover, Scott County closed its remaining HIV-testing clinic in early 2013. The local health department offered HIV testing, but its unfortunate location next to the police station no doubt sent an ominous message to anyone grappling with a drug problem or fearful of Indiana's robust and punitive HIV-criminalization laws. Although additional testing and HIV-related social services were available just five miles away, many residents lacked transportation or health insurance. "We saw this coming a long time ago," Dr. William Cooke, one of Austin's only physicians, told the Chicago Tribune. "We've been asking for help for some time." After mounting pressure from public health and local law enforcement officials, then governor and now vice president Mike Pence, a staunch conservative and fierce opponent of needle-exchange programs, declared the outbreak a state of emergency and issued an executive order that authorized a targeted, 30-day emergency needle-exchange program.

The Scott County case — in which an HIV outbreak both reflected and capitalized on a community's economic, political, and social vulnerabilities — is by no means unique. The transmission of the virus occurs most frequently in the United States through sexual intercourse and, to a much lesser extent, the sharing of needles during intravenous drug use. People generally engage in these behaviors through relationships, and those relationships are embedded in social networks. Like so many social processes, as HIV travels within and across social circles, the communities in which we live and the relationships that we have can facilitate or minimize our risk of contracting the disease. Two women can have identical histories of drug use and identical numbers of sexual partners, but the woman who traverses a social network with a higher HIV rate is more likely to contract the virus. Networks are unequal in their capacity to prevent an infectious disease from entering and spreading. Networks whose members are well informed about HIV, have access to regular testing, and use prevention tools such as condoms, clean needles, and antiretrovirals are more likely to experience low levels of transmission. Therefore, to understand HIV, we must look at where we live, where we work, and where we socialize as we map the social ties — short-term and long-term, weak and strong — that contribute to our health outcomes.

Traveling just four hours north along Interstate 65 from Scott County to Chicago, Illinois, it is similarly apparent that to fully understand the lives of WLWHA, and highly stigmatized women more broadly, we first need to understand the environments in which they operate and the context in which they acquired HIV. By the time many women are diagnosed, they are suffering not only from the virus itself but also from the social forces and personal struggles that are simultaneously assaulting their minds, finances, and relationships. My interviews pointed to three conditions that heightened both women's HIV risk and the overall levels of distress in their lives: the aftermath of childhood sexual trauma, participation in a drug trade that is at once seductive and suffocating, and the secrecy and silence embedded in communities hit hard by HIV/AIDS. In these situations, personal, familial, institutional, community, and societal failures, missteps, and gaps powerfully converged in women's lives as accumulated injuries of inequality. Crises occurred frequently in this state, sometimes making physical death an immediate possibility. The women were suffering a kind of social death, to borrow from ethnic studies scholar Lisa Cacho, in which their value was "made unintelligible through racialized, sexualized, spatialized, and state-sanctioned violences." It was often to escape this state of dying from that women launched transformative projects. This chapter analyzes this context of risk in more depth, but first it is important to provide some historical details about the AIDS epidemic.


In its June 5, 1981 Morbidity and Mortality Weekly Report (MMWR), the CDC reported on cases of the rare lung infection pneumocystis carinii pneumonia found in five young gay male patients. While scientists believe that HIV was present years before the first cases documented in the MMWR, this communiqué marked the official recognition of a new disease that would come to be known as AIDS. A report one month later in the same publication reported on Kaposi's sarcoma among young gay men, a rare skin cancer whose bright purple, red, or brown lesions would later be understood as one of the most identifiable symptoms of AIDS-related illness. As a handful of mainstream media outlets reported on the MMWRs, a July 1981 New York Times article under the headline "Rare Cancer Seen in 41 Homosexuals" helped to solidify the initial framing of the epidemic for the general public. Prior to the CDC's 1982 designation of the disease as acquired immune deficiency syndrome, terms such as GRID or gay-related immune deficiency were used early on by some media outlets and health officials, suggesting an inherent link between the new disease and homosexuality.

People who inject drugs (PWID) were also afflicted with AIDS from the outset of the epidemic, although their plight was less visible. Within a year of the 1981 AIDS-related MMWR, the CDC established injection drug use as "an identified risk factor" for AIDS. Although there was some overlap between the two groups, PWID did not receive the same level of attention as white gay men, who were framed as the earliest victims of AIDS and who quickly mobilized and leveraged their political capital to elicit answers from scientists and resources from the government. Additional challenges hampered efforts to address the increased risk for PWID, who are less likely to have consistent access to or to utilize healthcare services, and whose often transient lives make it difficult to track disease progression over time. The rising death toll among PWID in the 1970s and 1980s was often attributed to any number of conditions and ongoing health concerns, in contrast to cases in which previously healthy gay men presented with AIDS-related symptoms. Lacking political clout and engaged in illegal behavior, PWID had almost no organized voice in the epidemic's early years. So while the CDC stated early in the epidemic that abstention from intravenous drug use and avoidance of needle-sharing were likely to prevent transmission, funding for harm-reduction tools such as needle-exchange programs, drug rehabilitation services, and AIDS prevention efforts faced significant resistance. Much of this thinking continues, as evidenced in the Austin, Indiana, case, and will likely hamstring current efforts to confront a growing opiate epidemic in various parts of the country. This is despite clear evidence that these programs do not result in increased drug use among participants or the recruitment of first-time drug users. In fact, needle- and syringe-exchange programs have been found to reduce disease incidence while providing medical testing, counseling services, referrals to drug treatment, overdose prevention, and housing and employment programs. They are also believed to reduce the number of improperly discarded syringes that can unintentionally expose children, first responders, sanitation personnel, and others to transmittable diseases.

Individuals who acquired HIV through heterosexual sex made up 25 percent of all new HIV diagnoses in 2015. Most cisgender women living with HIV/AIDS contracted the disease in this way: in 2014, approximately 87 percent (7,242) of new diagnoses among women were attributed to heterosexual sex, while just 13 percent (1,045) were attributed to injection drug use. HIV is more efficiently transmitted from men to women during sexual intercourse than vice versa, due to women's longer exposure to infectious fluids and increased risk of tissue injury.

As an infectious disease, HIV "can happen to anyone," as the various public service announcements of the 1980s and 1990s warned us. When HIV/AIDS gained prominence in the American collective imagination in those early years, many activists and advocates encouraged the public to view the epidemic in universal terms, reminding us that we are all biologically vulnerable to infection. The high-profile and diverse experiences of HIV-positive youngster Ryan White, tennis champion Arthur Ashe, NBA star Earvin "Magic" Johnson, and Republican National Convention speaker (and woman living with HIV) Mary Fisher helped drive this point home. This message has been an important tool in fighting the spread of the epidemic in the general population, and perhaps its greatest usefulness has been to challenge AIDS-related stigma and garner public support to fight a disease that anyone can get.

The burden of the epidemic has not, however, been borne equally or randomly across the US population. AIDS has functioned largely as a concentrated epidemic in the United States, with disproportionate infection rates among sexual minorities, black and brown communities, the poor, and transgender women. This is the inherent tension in the "it can happen to anyone" narrative: it underemphasizes the critical role of inequality in risk exposure, prevention efforts, treatment access, and the experience of living with HIV. The disease's calcifying socioeconomic, racial, and gendered dimensions call on us to interpret it as one of individual circumstances, attitudes, and behaviors that exist within and interact with environmental norms, forces, opportunities, and constraints. Stated differently, our connection to the HIV/AIDS epidemic reflects our existence as gendered and racialized bodies, each with a particular socioeconomic status and sexual identity in a society that either values or devalues those statuses by offering or withholding bodily protections. AIDS stigma was therefore generated not only because of inaccurate fears that the condition could be transmitted casually, but also because of the associations between the disease and society's most marginalized. Given the epidemic's history and the accompanying social and political stigmatization, it is perhaps not surprising that women who were already experiencing multiple intersecting traumas in their lives and neighborhoods would find themselves in the crosshairs of an HIV diagnosis. As we meet our central storytellers — Trisha, Beverly, Keisha, and Yvette — and trace their paths, we see how their personal experiences, social networks, and community context interacted in ways that heightened their risk.


Conversing with women living with HIV/AIDS for more than a decade, hearing their stories across the table, I came to dread a particular moment. When it happened, the vulnerability and pain in women's eyes shook me to my core. Several interviews into the study, I began to sense in advance that the moment would come, the life events women shared dropping clues like breadcrumbs. By the end of my fieldwork, I could anticipate, almost to the moment, when the reveal would occur.

The prevalence of early sexual trauma in the lives of WLWHA is profound and alarming. The CDC states that nearly one in five women (18.3 percent) reports having experienced rape. The one-time interviews we conducted with WLWHA from diverse racial, ethnic, and economic backgrounds revealed one in four (28 percent) had been raped or molested before the age of 25, and twothirds of the women with histories of drug addiction reported experiences of early sexual abuse. White, black, and Latina study participants all fell victim to this experience, a highly personal injury of inequality with structural roots in gender-based violence and unequal power dynamics. And our number likely underreports the actual incidence rate, given the trauma, shame, and silence associated with this experience. As the #MeToo movement has revealed, sexual violence is endemic to our society, cutting across socioeconomic and racial lines.

Trisha McIntosh

Trisha McIntosh (white, age 55) was diagnosed with AIDS in 1996 at the age of 42. Born in Canada, she was raised by an adoptive family there. She described multiple instances of abuse at the hands of her adoptive mother's new husband and his sons. When she was about 15, she told her mother of the abuse: "She put me out of the house. She accused me of trying to steal her husband. Well, [the abuse] started when I was four years old. You don't try to steal a husband. She needed to get me psychological help, therapy, and she didn't. So, in my book, I do blame her. Children don't make those things up. They don't make them up."

Consistent with larger trends, the abuse the Chicago study women described experiencing was most often perpetrated by someone they knew. Biological relatives or close family friends were often the victimizers, but stepfathers and boyfriends of girls' mothers were the most common offenders. Echoing Trisha's experiences, Rochelle, a black 35-year-old nursing home worker, observed, "My mom was dating this man. ... He couldn't really keep his hands off me. I was eight years old. But he really didn't start actually penetrating me until I was 14. I didn't tell my mom because in my mom's mindset, her man came before her kids. And I was that child that she didn't want." Drug use in the home sometimes facilitated abuse. The mother of Rosa (Latina, age 28) had a severe drug addiction and routinely brought home men from local bars who would then sexually violate Rosa. The Department of Children and Family Services stepped in, placing Rosa and her siblings in group homes when she was just nine years old. After one particularly disturbing visit to see her mother, who was jailed for the remainder of Rosa's childhood, Rosa did not see her again until she was 23.

Feminist scholars have offered numerous analyses of sexual violence to underscore girls' vulnerability. Evelynn Hammonds writes, "Many young women live in ... communities where few support systems exist to protect them and allow them to grow unmolested to adulthood." Silence, dissembling, and strong investments in asserting their respectability (or their sexual prowess) become dominant strategies girls deploy to protect themselves and maintain some control over their environments after experiencing sexual violence. At a pivotal point in their development, these girls learn that their bodies are not fully within their control: they are vessels that can be readily abused, hurt, and violated. Katy (white, age 36) was 16 when she was raped during her first sexual experience: "It was a date-rape situation. I did not consent at all. So that sort of set the precedent, so from 16 to 19, sex was kind of bad." As girls, some of the women in my study also received the confusing message that their bodies could attract attention and get them access to things they wanted or needed, as Trisha explains below.


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Copyright © 2019 Celeste Watkins-Hayes.
Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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Table of Contents

List of Figures and Tables ix

List of Key Abbreviations xi

Introduction. Injuries of Inequality and the Transformative Project 1

1 Dying From: Sexual Violence, the Drug Economy, and the Persistence of HIV/AIDS 35

2 The Safety Net that AIDS Activism Built 80

3 Living With: The Emergence of Transformative Projects 135

4 The HIV/AIDS Safety Net Meets the Test-and-Treat Revolution 178

5 Thriving Despite: Social, Economic, and Political Restoration 204

Conclusion. Inequality Flows through the Veins: Transformative Lessons from the HIV/AIDS Response 229

Acknowledgments 253

Appendix A Methods of Research 259

Appendix B Health, Hardship, and Renewal Respondents 273

Notes 281

Index 307

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