How do HIV-positive individuals transition from believing and behaving as though they have a 'death sentence' to interpreting and coping with HIV as a chronic but manageable illness? Using interview data collected from 30 HIV-positive African American women, we reveal how and why interactions with non-profit and government institutions help to explain variation between those who thrive and those who do not following an HIV diagnosis.
We argue that ‘framing institutions’ shape the form and tenor of coping trajectories by offering:
- initial information about one’s HIV status,
- a conceptual framework to understand what it means to have HIV,
- language to talk about one’s condition, and
- resources to begin restructuring one’s life in the wake of a diagnosis.
Ultimately, we highlight how a diverse array of non-profit and government institutions not only play a critical part in helping women cope with HIV but also renegotiate their social identities as black women after receiving another stigmatizing social marker. In short, organizational ties shape women’s movement from beliefs and behaviors that suggest that they are ‘dying from’ this disease to attitudes and actions consistent with the notion that they can ‘live with’ HIV.
This article posits that the response to the AIDS epidemic among Blacks in the United States must acknowledge structural and institutional realities that render poor Black urban neighborhoods particularly vulnerable to high HIV infection rates. The controversial film Precious: Based on the Novel Push by Sapphire, inspires our analysis, revealing the spatial context of HIV risk and suggesting new potential avenues through which to address the epidemic at the neighborhood level. In the film, we find opportunities for institutions to serve as intermediaries among neighborhoods, families, and individuals, not only to reduce the transmission of HIV, but also to improve health management for HIV-positive inner-city residents. The film points to three potential location-based sites of intervention:
- mental health services that treat childhood sexual trauma;
- HIV-related health messaging and services within urban street-level bureaucracies; and
- neighborhood access to food and dietary resources that mitigate HIV disease progression.
In this essay, I argue for increased analyses of the social consequences of HIV/AIDS for infected black women in the United States, including examinations of the various ways in which their social and economic experiences are impacted by the interplay between their health statuses and racial, gender, and class locations. I frame the discussion by chronicling and critically assessing the body of work highlighting multiple explanations for the increased infection rates among black women, revealing the relative dearth of work that focuses on the everyday lives of women who are currently living with the disease. To begin to address this lacuna, I consider how researchers might tease out the various ways in which HIV-infected black women formulate, sustain, and interweave their economic survival strategies and intimate relationships:
- First, I recommend bridging the gap between the US-based HIV/AIDS scholarship that focuses on the labor market experiences of primarily men and the employment and social policy research that has gleaned critical insights about the work lives of black women.
- Second, I caution against constructing the intimate lives of HIV-positive black women solely in a context of risk or against the backdrop of the highly publicized “down low” debate about black men who fail to disclose same-sex sexual behaviors to female partners. These foci have shaped the conversation about black women living with HIV/AIDS in distinct ways, hampering fuller portraits of how they create, maintain, or go without intimate relationships.
- Third, I explore new ways of thinking about the intersection of women’s economic and intimate lives using three case studies presented in this essay.
Social scientific approaches have the potential to help explicate how HIV/AIDS is not simply a medical epidemic, but also a social and economic phenomenon that shapes a variety of individual-, family-, and community-level outcomes.