Read an Excerpt
Workable Sisterhood
The Political Journey of Stigmatized Women with HIV/AIDS
By Michele Tracy Berger Princeton University Press
Princeton University Press
All right reserved. ISBN: 0-691-12770-0
Chapter One
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, 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, former small-time drug dealer, and former crack addict. She contracted HIV 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 foremostpeople 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, 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. 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. They were sex workers, drug users (primarily of crack cocaine), and lawbreakers (engaging in criminalized activities) in every sense of the word. Personally, many of these women's lives were complicated by domestic violence, childhood sexual trauma, sexual assault, family substance use, and intermittent poverty. Before they became HIV-positive, aspects of their lives could be characterized as troubled, difficult, unmanageable, and depressing. They were women whom the average person would not have taken notice of, identified with, nor thought worthy of any special attention. If anything, they were women whom society had either given up on or directed particular punitive policies, agendas, and programs against.
These sixteen women were diagnosed with the HIV/AIDS virus from 1986 to 1996. During their diagnosis, they were perceived and identified by medical providers and others involved in the medical arena already as "deviant" women. The circumstances surrounding how the women discovered their HIV-positive condition might surprise, or even shock, the average person. The experiences they recounted were humiliating, painful, and stigmatizing. I have labeled their remembrances, and subsequent actions because of these remembrances, under the rubric narratives of injustice. The narratives of injustice suggest to us the mistreatment the women faced due to the specific conditions of their experience. These events created the catalyst for respondents to embark upon an individual and collective quest grappling with what it meants to be a stigmatized HIV-positive woman.
Collectively, these women represent populations (women of color, drug users, urban residents, low-income women, drug-using prostitutes) that are among the fastest growing groups in the country with HIV/AIDS. They represent the new "face" of populations with HIV/AIDS in this country. They are a group of women with HIV who are highly stigmatized because of their former lifestyles. Also, because they have overlapping membership within the groups mentioned, they embody the structural ways in which the disease highlights long-standing areas of inequality along race, class, and gender axes.
Infection with the HIV/AIDS virus has the capacity to make previously hidden people public. Groups who were marginalized before (e.g., gay male communities) have come into public view because of the ravages of HIV/AIDS. For some, however, this disease can increase invisibility, causing individuals to recede further into marginality and stigmatization. Some people respond to the public labeling of HIV, and resulting stigma, with resignation, shame, and death. This story, about these women, could have ended here without another passing thought. But it does not.
There are other HIV-positive people who refuse to be made invisible, who use their rage and fear to mobilize and confront existing power structures. The women discussed here fall into this category. The rest of the story is about how these sixteen women responded to the HIV/AIDS crisis in personal ways that spiraled out to touch and intersect with their communities and the political realm.
Intersectional stigma is a distinctive aspect of their story. What makes their experience of the HIV/AIDS virus and their participation different from other counterparts of people with HIV is the influence of intersectional stigma. Intersectional stigma is a theoretical framework composed of the recognition of and attention to intersectionality (or acknowledgment of race, class, and gender subordination as interlocking forms of oppression), and stigma (or the ways in which people become socially defined as "other"). Intersectional stigma allows me to theorize about the distinct ways in which marginality is manifested and experienced. Furthermore, intersectional stigma represents the total synchronistic influence of various forms of oppression, which combine and overlap to form a distinct positionality.
Through the prism of intersectional stigma, we can theorize that given that the women were already socially positioned as "deviant women," the effect of the HIV/AIDS virus was to dramatically add to and combine with their existing social marginality. This phenomenon, I argue, is in part related to the fact that contracting the HIV/AIDS virus as a woman who has a crack cocaine and sex work background is incredibly stigmatizing. The framework of intersectional stigma helps explain the reasons why when initially diagnosed with HIV they received negative treatment from family, medical providers, peers, and others. Because of the onus of intersectional stigma, they experienced a qualitatively distinct form of stigma. Additionally, their HIV-positive status and experience of intersectional stigma highlighted other facets of inequality in their lives. Coming to terms with why they were stigmatized as people with HIV forced them to ask deeper questions of themselves. The questions once raised would cause a search for answers, which would continue to change and shape their lives.
Through this process they embarked on the path of "life reconstruction." Life reconstruction is the underlying foundation facilitating women's political activities; it consists of the specific ways in which women redirected areas of stigma that enabled them to deal with the HIV/AIDS virus. The result of this process was minimally twofold. First, it enabled them to develop a "public voice" about being a woman with HIV; second, it allowed them to become aware of resources that would form the underpinning for their later political activities. The resources gained by the women during the life reconstruction process were not usually those of professional status and mobility, higher education, or large amounts of money. These are the resources usually associated with political participation. The women, however, discovered and developed both external and internal resources including faith and spirituality, substance abuse treatment, therapeutic work on early sexual trauma, a reliance on self and female peers, an introduction to HIV/AIDS advocacy, and ideas about activism.
Regarding political participation, there is a generally accepted idea of a hierarchy of mobilization. This idea suggests that a person often begins being politically active at the "lower" end of the spectrum, and then moves into the "higher" end. Or, stated another way, a person moves from informal to formal political activity. Political activity is often not seen as an end within itself, but a constant progressing toward more complex forms of participation (Rosenstone and Hansen 1993; Ackelsberg 1988). Interviews with the politically active HIV-positive women forced me to reexamine this theoretical "hierarchy of mobilization" from these women's perspectives.
For my respondents, participation did not emerge as the result of an isolated, abstract process, a process that is so often described by many political participation scholars; their participation is embedded in a relational dynamic (for critiques of the democratic process as isolated, abstract, and universally male see Ackelsberg 1988; Bookman and Morgen 1988; Flammang 1997; Nelson 1989).
When we think of people exerting political power and influence in our society, we tend to think of people casting votes, forming political action committees, or deciding to run for office. Yet many types of political "work" hold American society together. With a renewed sense of optimism, and faith, the women, through their efforts, slowly became part of the political process and affected the lives of HIV-positive people. And yet their participation did not culminate with someone running for office-providing for an easy, neat, and linear ending to their participation and the story.
The best method to capture the ways in which they articulated the work they did in their communities and the meanings they made from it is reflected in my concept of blended and overlapping roles. Blended and overlapping roles draw on the structure of their paid and unpaid activities in the community. Their use of blended and overlapping roles also allowed them to draw on various kinds of knowledge and expertise.
The Women and the Activities
The activities respondents participate in range from "formal" political action like voting to "informal" political action. Most respondents have moved into various types of grass-roots-level political participation, primarily in the areas of HIV/AIDS issues. These latter activities include undertaking HIV/AIDS outreach and education; petitioning the state of Michigan for monies for HIV/AIDS research conducted on women; and fighting for better substance abuse treatment programs for lower-income women. They have petitioned the legislature about bills that would affect HIV-positive people. Other participants have attended national conferences (as panelists and invited presenters) and have spoken to women and young girls at different facilities including prisons, churches, schools, and community centers. A few have made appearances on both radio and television; others have written opinion pieces for newspapers. Women's efforts have resulted in the widespread usage of pre- and posttreatment counselors in most HIV/AIDS testing sites. Working with city officials, they have advocated for better-designed support and service programs for women with HIV and their children. Some have helped design those programs. They have testified in public hearings related to HIV/AIDS issues. Many of these activities helped them to stay both self-empowered and community focused.
Broadly construed, the primary concerns of my respondents that lead to political engagement include HIV/AIDS education, HIV/AIDS prevention, health care, child welfare, community development, and crime. Overall, these types of informal and grass-roots-level organizing are thought of as a common pathway for women as first political experiences (Randall 1987; West and Blumberg 1990).
To continue this discussion it is appropriate to look closely at the situation of U.S. women with the HIV/AIDS virus. Just what has been the virus's impact on women in the last decade?
THE NEW "FACE" OF HIV/AIDS
The women HIV affects are more varied than the virus's own mutations.
Nothing better epitomizes the multiple voices and visions of AIDS than women's experiences of the epidemic. -Nancy Stoller, Lessons from the Damned
The HIV/AIDS virus is a pandemic issue. The United States is undergoing a significant shift in the populations the virus is affecting. Women continue to increase as AIDS patients (Phillips 1997). Deaths caused by AIDS declined in men during 1996, but increased in women by 3 percent (Phillips 1997). This change has come in what seems like a short span of time, little more than a decade. The HIV/AIDS virus is now seen as reaching a plateau for some groups of men in the United States, but still swelling for women. The acquisition and treatment of HIV/AIDS in this country underscores several of the structural realities of class, race, and gender. Among women of color, African American women, in particular, have been hard hit by the spread of the virus:
Between 1985 and 1988, the rate of HIV-infection quadrupled among women of color, many of whom reside in poverty-stricken inner city communities. Today, women of color constitute 72% of all women infected with HIV, 53% of whom are African American and 20% of whom are from Latin America. Urban mortality rates indicate that AIDS is the leading cause of death among African American women between the ages of 15 and 44 years and among Latinas between the ages of 25 and 34 in New York and New Jersey. It is predicted that in the twenty-first century, AIDS will become the leading crusade of death among minority women of childbearing age. (Chu, Buschler, and Berkelman 1990; as cited in Land 1994, 356)
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Excerpted from Workable Sisterhood by Michele Tracy Berger Excerpted by permission.
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