Interview with Celeste Watkins-Hayes

In the book you discuss how you arrived at this project back in 1999, after interviewing a black woman who was living with HIV while you were a research assistant for the Welfare, Children, and Families Three-City Study. Why is it important for us to understand black women’s individual, social, and institutional negotiations of HIV/AIDS in the U.S. now?

Building on what I initially learned in 1999, I began conducting fieldwork on the HIV/AIDS epidemic among women in the United States in 2005, culminating in almost 200 interviews with HIV activists, advocates, policy officials, and women living with HIV whose stories chronicle the fascinating transformation of HIV/ AIDS from a death sentence to a manageable chronic illness. The HIV/AIDS epidemic is, and has always been, fueled by intersectional inequality. The virus is transmitted through social and sexual networks; and our networks tend to be segregated by race and class and have unequal access to protective resources such as information, prevention, and treatment resources. In addition, some of the biggest drivers of the epidemic such as homophobia, racism, transphobia, sexism, poverty shape the historical and present-day disparities in health care access and quality as well as our political and policy responses to these issues in ways that leave marginalized groups more vulnerable to HIV than more privileged sectors of society. Finally, we must recognize how sexual behaviors can be tied not only to structural violence but also interpersonal violence. During the interviews we conducted with women living with HIV from diverse racial, ethnic, and economic backgrounds, one in four revealed that she had been raped or molested before the age of 25, and two-thirds of the women with histories of drug addiction reported experiences of early sexual abuse. Those issues are intertwined: the interaction between the epidemics of sexual violence and drug addiction has produced a landscape that draws in highly vulnerable women, situates them in a structure that further reduces their power, and increases their risk of contracting HIV.

Black women have been disproportionately affected by HIV/AIDS relative to other women from the beginning of the epidemic. In January 1983, the first two cases of cellular immunodeficiency associated with AIDS in women documented by the Centers for Disease Control and Prevention were women of color, one black and one Latina.1 More recently, among all women with HIV diagnoses in 2017, 59% were African American, 20% were white, and 16% were Latina.2 That year, HIV/AIDS was the fourth leading cause of death among black women ages 35–44, before diabetes, stroke, and homicide.3 While women from other racial backgrounds have fortunately seen HIV/AIDS drop below their top ten leading causes of death, it is deeply troubling that it remains one of the leading cause of death among black women in their twenties and early thirties. So despite the significant advances, younger generations of black women continue to die unnecessarily from AIDS-related complications.

Nevertheless, we are at an important moment in the history of the epidemic. We now have medications that are scientifically demonstrated to be very effective at preventing HIV transmission (PrEP) and lowering viral loads (a measure of HIV in the body) to levels at which the virus cannot be detected in the bloodstream. That means that there are now biomedical tools to end the epidemic. But the people who are best positioned to take advantage of these medical advances and virtually eliminate HIV in their sexual and social networks are people who are already privileged. If significant inequities hamper access to medications, health care, and other necessary resources, we will see a growing “undetectable divide” between groups. This concern reminds me of a statement made by women’s health advocate D'azon Dixon Diallo when I interviewed her for my book. “The one thing that I want to be sure of,” she stated, “is that black women, no matter where we live, get to the end of this epidemic at the same time as everybody else.”

This statement also reminds us that black women have been unsung leaders and foot soldiers in HIV/AIDS activist and advocacy work. Their platforms are smaller, their organizations have fewer resources, they do not receive the sympathetic media and popular culture portrayals that tug at a nation’s conscience, and they do not always have broad and visible support from their communities.4 But they have long been in the fight and have contributed a great deal. They have partnered with other women and men to build coalitions. We may not have always seen them on the front lines of direct action when we think about the highly visible protests of the 1980s and 1990s spearheaded by AIDS organizations predominately led by white gay men. But it is important to remember that during this period, many women lived in fear of what participating in these protests would mean for their children and whether they would face harsh scrutiny around how they came to be HIV-positive and what that signaled about their morality as women and their fitness as mothers.

Nevertheless, there were black women who took the risk and fought for women’s whole selves to be seen and heard as beings with political, economic, social, and even sexual rights. They started their own grassroots organizations and became change agents within hospitals, community organizations, and government to affect policies and programs. In the book, I highlight the work of women like Katrina Haslip, Linda Scruggs, Gina Brown, and many others who have been involved in this work for decades. It is important to tell a nuanced story about the epidemic’s causes and consequences, but also about how black women, women of color, and women in general responded when they found themselves caught in its crosshairs. They too—to borrow a phrase from famed AIDS organization ACT UP—stood up and fought back. This adds more complexity to how we understand AIDS history and its present-day dynamics. So in all these ways, the HIV/AIDS epidemic and the subsequent response to it both offer a lens by which we better understand black women’s positionality at the micro, meso, and macro levels of society as we observe them within networks, institutions, social movements, and society as a whole.

One of the major challenges your work offers to the fields of sociology and African American studies is the “transformative project,” a model that challenges pathological and fixed narratives attached to the so-called “truly disadvantaged.” Can you elaborate on this concept and how it revises our current understandings of the black HIV/AIDS epidemic?

In the book, I problematize the term social determinants of health, which I find to be the equivalent of using passive voice to discuss injustices and harms directly and indirectly committed against marginalized populations. I prefer injuries of inequality because it foregrounds inequity as the primary driver of health disparities and calls upon us to reflect on the ways in which people are wounded by the gaps in resources and power that we too often see as an acceptable status quo. Injuries of inequality—big and small wounds to personal, family, and community well-being—result from interpersonal, institutional, or systemic violence or trauma rooted in the exploitation of unequal power dynamics. A person, institution, or set of systems can wield power in a way that negatively impacts the health outcomes of an individual or community. As such, injuries of inequality produce, and are produced by, a compromised ability to protect oneself from harm.

My book nevertheless goes beyond documenting the injuries. The complex lives of the women I interviewed demand that we see them not as victims but as survivors who have agency. That agency is restricted, but it is agency nonetheless. I pinpoint how women deploy their agency to move from what I call dying from to living with to thriving despite their HIV diagnosis. But the concept extends to other personal traumas and systemic injuries of inequality.

The transformative project is a framework that I use to illustrate how women make this transition. I define the transformative project as a multidimensional process by which individuals fundamentally shift how they interpret, strategize around, and tactically address struggles related to complex inequalities that affect their everyday lives. It entails adopting a radically different set of approaches to negotiating questions of physical, social, economic, and political survival. To remake their lives, women alter how they engage in interpersonal interactions, with institutions and communities, and even with public policy, to create meaningful change over time. The transformative project typically incorporates several important shifts in multiple arenas of life and thereby generates a new modus operandi. The transformative project represents the active and purposeful physical, economic, and social restructuring of one’s life after being pummeled by some of the harshest blows of racism, poverty, sexism, and homophobia.

To be clear, the transformative project is not about personal transformation as an end in itself, what we commonly think of as “self-help.” It is not about “fixing” alleged deficiencies. Nor is the transformative project a repackaged elixir of “bootstrapping” personal responsibility. Rather, the transformative project is about the integration of individual agency with environmental networks, institutions, and public policies. By charting that process, including the resources women leverage and the barriers they confront, my work explicitly challenges the highly individualistic personal responsibility frame that dominates discourse about both HIV/ AIDS and social/economic disadvantage. Instead, I analyze how marginalized or stigmatized individuals use their power, however limited, to create dramatic and positive personal and social change while simultaneously engaging with the social, political, and economic conditions they seek to escape or alter. The transformative project therefore offers a framework to understand how people go about radically improving their lives that has policy relevance, political potential, and theoretical utility.

You explicitly name intersectionality, a black feminist theoretical and methodological framework, as central to your analysis. Can you tell us why this framework is important to your analysis, and how it advances analyses of the HIV/AIDS epidemic in black communities more broadly?

Scholars have conceptualized intersectionality as a theory of power relations, a methodological imperative to uncover interlocking inequalities, and a political perspective that resists oppression in all forms.5 With its roots in black feminist scholarship and activism, intersectionality allows us to present robust theoretical and empirical analyses of identity, representation, and narrative that fully recognize that ways in which race, gender, class, sexuality, and other statuses intersect to generate both situated identities and complex systems of inequality that help to shape lived experience and life chances.6 Another goal of intersectional work rooted in black feminisms and other feminisms that have traditionally operated from the margins is to critique powerful public discourses and stereotypes that limit and distort the realities of women, people of color, LGBTQ individuals, low-income people, and any others who inhabit multiple marginalized statuses.

Intersectionality is the lens through which I conduct my analysis, but it also shows up in HIV/AIDS activism. Women, gay and bisexual men of color, transgender individuals, low-income people, and others have consistently challenged the HIV community to “expand the tent” and define community in the most inclusive terms, explicitly and implicitly drawing upon black feminist and black queer political frameworks in their work. Many of these activists and advocates bring vocal critiques of racism, sexism, transphobia, homophobia and classism into discussions of both the epidemic and the internal politics of the HIV response. By pushing for increased access to culturally sensitive services, shared decision-making power, and attention to the unique needs of all of the populations deeply affected by HIV/AIDS—not just white gay men—those operating in this tradition continually push the AIDS community to stay true to the mission of moving people from death to life, and demanding that that be defined in the broadest sense of those terms. These individuals have also expanded what it means to be an AIDS activist-expert, bringing to bear their own situated knowledge and engagement with science and policy to make the fight against HIV/AIDS even more inclusive. Arguably, this demand for intersectional and deeply inclusive approaches to fighting the epidemic has been one of the greatest sources of tension within the AIDS response community. It is also, however, one of its deepest sources of strength. The labor and demands of the diverse communities affected by the epidemic have driven advances in the science of HIV/AIDS, improvements in services, and decisive victories in policy advocacy.

You identify one policy implication of your work as the need to invest in what you call an “HIV safety net,” and the expansion of a social safety net for multiply marginalized people in general. Can you discuss the significance of an “HIV safety net,” and elaborate on the social policy implications of your research?

While I spoke with women from a variety of backgrounds, many were grappling with a panoply of crushing obstacles: poverty, drug addiction, the aftermath of childhood sexual trauma, and a lack of social services, all of which made their acquisition of HIV more likely. Once these women received access to health care, economic assistance, and robust social support through the HIV safety net, they were not only able to live with the disease, but to tap into their reservoirs of resolve to thrive despite it. Some even became very influential activists in their communities. We sometimes see examples of people who make radical life transformations after confronting crushing individual and societal obstacles, but we often define it as a personal process. My work shows the ways in which those processes are in fact deeply social events, often enabled by stabilizing institutional supports and responsive public policies.

Looking at the HIV/AIDS community reveals how public policies and institutions—by implementing programs, distributing resources, and facilitating everyday social encounters—can play important roles in helping people move from dying from to living with to thriving despite. The Ryan White CARE Act, Housing Opportunities for People with AIDS (HOPWA), the AIDS Drug Assistance Program, and the Affordable Care Act have been important policy interventions, and some aspects of the culture within the HIV safety net that I describe in my book prove to be especially beneficial and productive.

But I would offer two caveats to this. First, of course the most comprehensive approaches to confronting injuries of inequality would demand systemic solutions, overturning existing economic, social, and political systems that drive the contours of the epidemic. What the AIDS community has created is valuable, but it does not upend existing power structures.

Second, we must acknowledge that the AIDS safety net does not work equally for all populations and that gaps in services exist. We must repair the safety net where it is tattered and establish it where it is nonexistent. Geographic variations in the efficacy of the HIV safety net are particularly troubling. Women’s access to resources in my book was largely predicated on living in urban centers in the United States with robust HIV/AIDS infrastructures that had historical roots in a politically mobilized gay community. The patchwork of support that many women weave together through AIDS services organizations is much more difficult to construct in the South and likely impossible to create in some rural areas. And increasingly, dollars are moving away from some community-driven services such as peer support, advocacy training, support groups, and case management in favor of emphasis on biomedical approaches to treatment that do not address the social and economic challenges facing large numbers of people living with HIV.

I would also be remiss if I did not also point out one of the deep and disturbing ironies of my book. Access to a safety net that allowed women to transform their lives was granted not based on need, but an HIV diagnosis.7 It took a diagnosis that was seen as a threat to public health for these women to gain access to the help they always needed. That is a striking commentary on our now-tattered social safety net that leaves so many to fend for themselves as they navigate growing economic and social inequality and its resultant injuries to individuals, families, and communities.

You discuss some of the limitations of prior research that has lumped transwomen’s experiences with HIV/AIDS together with those of gay men. Conversely, you suggest that we might find new insights by discussing black cis and transwomen’s experiences simultaneously. Can you say more about your findings? What are some of the similarities and differences that emerged between these experiences?

Both cisgender and transgender women have historically struggled to have their voices and needs included in the HIV/AIDS response. Estimates suggest that transgender women have an overall HIV seroprevalance rate of 28%, with extremely high seroprevalence (56%) among black transgender women.8 There are many problems with the way that transgender women, when included, have often been grouped with gay men in the HIV prevalence counts, research, service provision, and political activism related to the epidemic.9 This collapsing of categories does not address the unique struggles of transgender women and conflates sexuality with gender identity. This can elide the ways in which the benefits of advances in AIDS services, information, and treatments have eluded transgender women as compared with cisgender men and women. Part of this is because the level of and access to HIV services and resources for transgender women still significantly trails that of cisgender women, nor are the services as geographically dispersed. All of the intersectional stigmas that leave black cisgender women vulnerable are heightened for black transwomen as we consider issues such as economic opportunity, vulnerability in the criminal justice system, interpersonal violence, and access to health care. So this leaves black transwomen particularly vulnerable mentally, physically, economically, and politically.