Workable Sisterhood: The Political Journey of Stigmatized Women with HIV/AIDS

Chapter 1
THE POLITICS OF INTERSECTIONAL STIGMA FOR WOMEN WITH HIV/AIDS
I am sitting in a living room, in Detroit, full of decoratively placed plants. The colorful plants help to make the sparsely furnished room feel comfortable. My attention is drawn back to Nicole,1 a forty-two-year-old African American woman sitting in front of me on the couch. She is wearing an amber colored dress. Her braids are held back by an attractive hair tie, and she possesses a clear cadence to her voice. We have been talking for about an hour, and all my senses are alert. Nicole is about to tell me more of her recent political projects. From a manila folder, Nicole pulls out some materials to show me. Her file is crammed with press clippings, letters from Congresspeople, and grant applications.
Nicole is a former sex worker,2 former small-time drug dealer, and former crack addict. She contracted HIV3 five years ago; she has been and continues to be a stigmatized woman. Yet these categories alone I mention above contribute little to understanding her life when she was those other things, nor, more importantly, what her life has become now. She is a woman living with HIV who has become politically engaged. She is one of the foremost people involved with women and AIDS activism in Detroit. That afternoon we talk about Detroit politics, black male and female relationships, and prostitution. After talking with Nicole I feel that I am on to "something" about women and political engagement; I am learning from her. (Fieldnote 1996)
THIS FIELDNOTE, written in 1996, initiated a new way of thinking about the various women I had been studying in Detroit. What had begun several years ago as a research inquiry into the status of female lawbreakers,4 a "story" about crime, prostitution, and the ravages of crack cocaine use, had instead over time become transformed into a "story" explicating the lives of stigmatized, politically active HIV-positive women.5 This story was recast to highlight women (formerly active female lawbreakers) who after being diagnosed with the HIV/AIDS virus changed their lives. Finally, it evolved into a story about stigma, struggle, and a group of women who are nontraditional political actors. The process of how Nicole and other women reconstituted their lives once they became HIV-positive, how they created and utilized a web of nontraditional resources and participated in their communities became the cornerstone of this research. Their life struggles and political involvement help to question what scholars know about political participation for stigmatized women. The process by which these women have transformed themselves and exerted their rights in a democratic society deserves scholarly attention--and is a story worth telling.
There are three central elements to this story, making this story worthy of further explication. They are the actors (the women), the event (acquiring the HIV/AIDS virus), and the outcome (their political participation). Each of the elements is interdependent with the others, and they work together to create meaning. The questions that emerge from the telling of this story include: (1) How does such a severely stigmatized group of women participate? (2) Why do they participate? (3) What types of activities constitute participation for the women?
This chapter provides an overview of how the women "arrived" at this moment as politicized people, and what this arrival epistemologically ushers forth for capturing the dimensions of stigma and participation. Throughout, I reframe central questions about what constitutes political participation, including: How can we expand the notion of politics to include my respondents' experiences? Drawing on sociological insights about "community work" as political, I argue that in order to capture the dimensions of stigmatized women's work in their communities, a much more generous assessment of politics must be deployed. In the second half, I introduce the theoretical framework of intersectional stigma that helps explain the challenges stigmatized people face when becoming politically active. Intersectional stigma furthers the investigation into how people are situated within axes of social identities that often confer power and privilege.
Let us now return to the respondents. We begin with an overview of the story, followed by an argument designed to broaden our notions of politics.
AN OVERVIEW OF THE STORY
Sixteen women's lives comprise the foundation of this study. Their life stories are neither transparent nor easy for a researcher to characterize. Before becoming HIV-positive, most had lived lives that would make them suspect to the majority of Americans. They are primarily women of color.6