“Work What You Got” Political Participation and hiv-Positive Black Women’s Work to Restore Themselves and Their Communities

Abstract

hiv-positive Black women’s activism has been understudied, and input from the community in crisis has infrequently been deemed as valuable to public health officials in hiv/aids prevention and interventions. Through the narratives of thirty hiv-positive Floridian Black women, there were three emergent themes of political participation: 1) face-to-face activism 2) activist mothering, and 3) publically coming out as women living with hiv/aids. Results indicate that publically coming out as women living with hiv/aids may be a new activist strategy that can be added to the literature on Black women’s community-based political participation.

African American women’s rates of hiv/aids infection have skyrocketed in comparison to other racial and ethnic groups over the past thirty years. Today Black women have twenty times more occurrences of new hiv infection than other women in spite of recent declines in new infections (cdc, 2012). Regardless of these statistics, hiv-positive Black women’s perspectives are rarely sought regarding best practices to eradicate and interrupt hiv/aids among African American women, even though historically Black women have often proved phenomenal agents of social change (James, 2009; Springer, 1999). hiv-positive Black women’s activism has been understudied, and given the nascent literature on hiv-positive Black women’s standpoint on hiv prevention, this article focuses on their perspectives and stated concerns on effective prevention based upon their lived experience and situated knowledge. Through the narratives of thirty hiv-positive Floridian Black women (Melton, 2007), I present study results and the role of participant’s personal agency in community-based political participation to reduce hiv/aids.

African American women have been on the front lines for justice as abolitionists and anti-lynching advocates, from rabble-rousing for political and social equality and freedom for citizens, to fighting for a woman’s right to health (Guy-Sheftall, 1995; James, 2009; Springer, 1999). When it comes to hiv/aids, notes Hammonds (2009),

As in other eras, Black women are playing a large and diverse set of roles in confronting the aids epidemic—and they are doing so in the absence of institutions inside and outside of Black communities to address this difficult and growing health crisis

(p. 278).

Thus, it seems important that the roles that Black women play in hiv/aids prevention needs to be further amplified in the clinical, educational, and research literature.

In this paper I situate hiv/aids into the larger dialogue about African American women’s struggle for civil rights, equity and parity (Hammonds, 2009). Several researchers (e.g., Hammonds, 2009; Hine, 1989; Hunter, 1997) have investigated how Black women claimed and defined acts of self-assertion in the struggle for social justice. These acts mirror those of hiv-positive Black women’s current social resistance.

Overview Of Community Based Political Struggles

Black women’s historical political participation has been well documented by scholars, especially their activism during the twentieth century (Guy-Sheftall, 1995; Naples, 1998; Springer, 1999). Their efforts include standard, formal organizing and informal grassroots actions as well as working with feminist, multiracial, and/or co-ed associations (Guy-Sheftall, 1999). The extensive body of literature on Black women’s historical political organizing and participation includes women’s efforts toward health and wellbeing for themselves, their families and communities (Berger, 2004; Gilbert & Wright 2003; Grayson, 1999), and yet, despite this, hiv-positive Black women’s activism is sometimes overlooked.

Once it has been unfettered by the boundaries of traditional definitions of political participation, activism, and advocacy, African Americans women’s contributions to social justice projects and movements become even more extensive. These non-traditionally defined political activities are chronicled in countless studies and research (Berger, 2004; Gilkes, 1994; Naples, 1998), and it is this definition that I address in this paper. Berger (2004) suggests that women of color and economically insecure women involved in political activities did “not frame their meanings solely in political terms and often eschewed the realm of official, organized politics” (p. 83). Because women (particularly economically insecure women) are often excluded from formal political institutional structures, they become politicized through their work on behalf of the community and neighborhood (Gilkes, 1994; Kuumba, 2001; Naples, 1998).

Exclusionary practices grounded in gender, race, and class bias inform Black women’s lived experience and shape their ability to access mainstream strategies for justice and equality (James, 2009; Kuumba, 2001). Black women may experience intersecting oppression (Collins, 2000), that is simultaneous subjugation by institutional and personal oppression. Intersecting oppressions act to constrain Black women’s agency, self-determination, and political participation (Collins, 2000; Crenshaw, 1991). Multiple oppression can be both the reason and the catalyst for Black women’s social resistance (Naples, 1998). Pockets of resistance exist where women create self-agency. Oppression, combined with other factors, makes it possible for Black women to construct their own knowledge claims. This situated knowledge is derived from their participation in and/or observation of their oppressed circumstances (Collins, 2000).

Activist Black women use their informal kinship networks to organize and participate politically (Kuumba, 2001). The sexual division of labor forces women to develop strong informal and kinship networks in order to resist the demands of performing normative gender roles. They use these networks to enter political struggles. Such political participation is gendered because men and women base their populist struggles upon their societal gendered locations (Kuumba, 2001). Gender as a springboard for social resistance is tempered by structural factors and other dynamic variables linked to the execution of social protest (Naples, 1998). Institutionalized sexism may hinder recruitment measures, mobilization tactics, organizing, and fighting strategies if gender inequality is reproduced within formal political organizations (Kuumba, 2001). Gender bias influences women’s ways of protesting, notes Kuumba (2001).

Women’s political struggles at the local level, argues Naples (1998), are often in response to the activities of the state’s government officials and concomitant inactivity on issues pertinent to disenfranchised communities. Community work is broadly defined in African American communities in order to subvert oppression and suffering on multiple levels, and it is a continuous battle (Gilkes, 1994). Political participation for marginalized women includes non-electoral neighborhood work, grassroots organizing, paid and unpaid activities to subvert and challenge oppression, and maintaining or rebuilding communities (Gilkes, 1994; Naples, 1998). Because debunking stigmatizing images are vital to liberating and/or restoring communities of color, activism might include deconstructing stereotypes and oppressive ideologies (Collins, 2000; Gilkes, 1994; James, 2009). I use the terms political participation, organizing, social protest, social resistance, activism, political struggle, and community work interchangeably throughout this text to highlight hiv-positive Black women’s political participation in fighting hiv/aids.

Some Tenets of Black Women’s Populist Struggles

Women of color struggling for justice in disenfranchised neighborhoods conceptualize and understand their efforts in non-conventional terms (Berger, 2004; Harris, 2012; Naples, 1998). The body of literature on economically insecure Black women’s community-based political struggles substantiates the reframing of categories of analysis such as “work,” “family,” and “politics” (Berger, 2004; Gilkes, 1994; Naples, 1998). Mothering, for instance, is defined as the care and rearing of a blood-related child within the family home, but this term does not grasp the breadth or depth of women’s community work in confrontations with systems of power. Conventional understandings of “mothering” minimize the radical nature of women’s political activities and are in contrast with what they themselves believe about their political participation (Gilkes, 1994; Naples, 1998).

For African Americans, Black motherhood is acknowledgement that one woman being entirely obligated to raise one child may be impossible and/or misguided (Collins, 2000). “Othermothers,” vital components of African/African American culture, are women who share in childrearing, temporary custody arrangements, and/or long-term or permanent childcare (Collins, 2000). Othermothers may be fictive kin, sisters, aunts, coworkers or neighbors. The mother in othermother is not literal and refers to the idea of “cooperative responsibility” (Phillips, 2001) rather than childbearing/rearing or sexual orientation. Othermothers are not specific to a particular social class, although may be more prevalent in areas that experience greater financial disparity. Collins (2000) notes that “the resiliency of women-centered family networks and their willingness to take responsibility for Black children illustrates how African-influenced understandings of family have been continually reworked to help African-Americans as a collectivity cope with and resist oppression” (p. 83). Cooperative parenting and the significance of women-centered networks are resources used to subvert multiple oppressions.

Collins (2000) argues that as othermothers, Black women develop an ethic of caring and personal accountability that extends beyond the nuclear family. Some African American women believe that organizing is communal; it is not just about “me” the individual, but includes family, friends, and community. This philosophy is central to their ongoing struggle for social justice (Collins, 2000). “Activist mothering” (Naples, 1992) may occur when African American women connect their various gendered roles to their struggle for liberation. Activist mothers integrate personal, professional, family, and community problems into a politicized standpoint for social change (Collins, 2000; Naples, 1998).

Exclusionary practices that impede Black women’s participation and multiple oppressions may necessitate alternative strategies for resistance and agency. Black women do not simply reject formal means of political participation for informal organizing (Collins, 2000; Naples, 1998). Some Black activists draw on the tenets of activist mothering, and yet others recognize the patriarchal nature of normative gender roles and use community motherwork for political expediency (Mele, 2000). Bargaining with patriarchy may be necessary to counter the effects of race, class, and gender oppression because formal institutions may deny African American women’s organized political activities influence, power, and authority (Berger, 2004; James, 2009; Kuumba, 2001; Mele, 2000). As a result, Black women community workers use their everyday experiences and resources to undermine social injustice when possible.

hiv/aids and Black Women

Gender, race, and class oppressions may constrain Black women’s political participation, but it may also be the reason for their social struggles (Kuumba, 2001). Black women’s susceptibility to rates of new hiv infection is disproportionate in comparison to other women (cdc, 2012). Scholars investigating Black women and hiv vulnerability have addressed these major themes: condom use, multiple partners, and intercourse with intravenous drug users (Kim, Marmor, Neil, & Wolfe, 1993; Sobo, 1995; Wingood & Di-Clemente, 1998). Scholars have also critiqued hiv/aids studies for failing to contextualize studies and/or bias that skew the hypothesis and/or results of these reports (Akeroyd, 1994; Glick, 1992; Glick, Crystal, & Lewellen, 1994; Singer, 2001). Scholars and researchers who examine structural inequalities, hiv/aids, and Black women (Farmer, 1996; Lane et al., 2004) note that hiv prevention messages are more effective if they are gender specific and culturally relevant (Kalichman, Kelly, Hunter, & Murphy, 1993). Gender inequalities complicate prevention for women because intimate relationships may include violence and subordination, which leaves women unable to control the frequency, timing, and type of sexual contact, as well as the use of condoms (Sobo, 1995; Whitehead, 1997).

Factors such as un/underemployment, high national rates of the imprisonment of Black men (Watkins, Fullilove & Fullilove, 1998), poor public health systems (Scott-McBarnette, 1996), and negative stereotypes of Black sexuality (Hammonds, 2009) have been contextualized in the socio-cultural construction of hiv/aids for African Americans (Gilbert & Wright, 2003). Black feminists suggest that old historical scripts and societal misconceptions about Black sexuality are embedded within the hiv/aids narrative (Collins 2000, 2004; Hammonds, 1995, 1997; hooks, 1992). Collins (2000) argues, “being Black signals the wild, out-of-control hyperheterosexuality of excessive sexual appetite” (p. 129). Today, negative stereotypes of Black women as overly sexed can be linked to images of Black women in popular culture and in the aids epidemic. Popular depictions of African American women’s sexuality as unnatural combined with intersecting oppressions and hiv-related multiple stigmas complicates the hiv/aids narrative for women of color. This may suggest an overdependence on stereotypes and media representation of what it means to be seropositive, African American, and a woman (Hammonds, 1997). Some women in this study expressed that they “weren’t sleeping with a lot of different men,” indicating a disparity between mainstream misperceptions of Black women’s susceptibility to hiv and women’s actual lived experiences. Negative sexual stereotypes complicate Black women’s assessment for hiv vulnerability on multiple levels (Hammonds, 1997), one being to downplay the significance of unprotected sex.

The multiplicity of issues that hiv-positive Black women face can be analyzed using an intersectional framework. Intersectional stigma describes discrimination specific to minority women with hiv/aids who were infected either through a combination of drug use and/or sex work (Berger, 2004). According to Berger (2004) multiple stigmas related to hiv, when combined with intersectional oppression, create power hierarchies of stigmatization or intersecting stigmas that work together to create a unique position for hiv-positive women of color (Berger, 2004). Marginalization from the margins is the place from which women in this study launch their social protests.

The prevention perspectives of hiv-positive Black women have emerged at a slower pace than the body of literature on hiv/aids. The experience of women living with hiv has been documented in personal memoirs and in ethnographies by scholars. Gilbert and Wright’s (2003) anthology examines African American women and hiv/aids by exploring community activism, socio-cultural policy, economic and political aspects of hiv/aids, and its intersection with Black women and girls and the communities in which they live. Despite numerous scholarship on women living with hiv, Gentry’s (2009) ethnography is the only scholarly investigation for prevention that is grounded in the perspectives of hiv-positive Black women.

It has been primarily activists who investigated and wrote about women’s early national grassroots activism against aids (Banzhaf et al., 1992), however, feminist approaches to aids activism were also examined (Schneider & Stoller, 1995), as was the exploration of aids activism by women of color (Berger, 2004; Harris, 2012). Berger’s (2004) work is groundbreaking in investigating the political participation of hiv-positive women of color. Intersectional stigma is a pivotal concept to understanding and examining hiv-positive women’s political struggles. Berger’s (2004) study, however, does not focus solely on hiv-positive Black women. With her pilot study Harris (2012) examines Black women’s aids activism and situates it into the canon of Black women’s historical community activism. As the only study of its sort, Harris plans to explore Black women’s aids activism in a broader research study, but she does not focus specifically on hiv-positive Black women’s political participation. There is not one specific text that examines the contributions, perspectives, and struggles of only hiv-positive Black women as they grapple with a chronic stigmatizing illness while simultaneously working to restore and re-claim their communities. While studies about hiv/aids exist, many focus on behavior, sexual practices, and drug use; some of these studies help to reinforce negative stereotypes about Black women’s sexuality and work to constrain and silence their political participation.

The study presented here seeks to explore the aids activism of thirty hiv-positive Black Floridian women. Analyzing these narratives using community-based political participation, Black feminism, and structural inequality as related to hiv/aids may establish a framework for incorporating the perspectives of Black women living with hiv/aids into the existing literature. These poignant narratives of hiv-positive Black women who are struggling to find solutions to restore themselves and their communities illustrate their political participation in relation to these emerging themes: face-to-face activism, activist mothering, and publically coming out as women living with hiv/aids.

Methods

Participants

Because African American women are the population group most heavily impacted by new rates of hiv infection, thirty hiv-positive Black women were recruited to participate in the study. Study participants were recruited from a clinic that serves women and children. These women live in a Florida intercity community and range in age from 21 to 60. Study participants self-identify as women of African descent and as hiv-positive. Participants were recruited through a women’s family medical clinic in Florida, called “the center” for anonymity. The center advocates a one-stop-shop philosophy and houses medical, dental, psychological, social services, and pediatric care in one building. Despite the center being a medical facility where several physicians engage in clinical work, some participants only received social services. Names used in this article are pseudonyms to protect the anonymity of women in this study.

The selection process to recruit participants was non-random and the interviews were non-compensatory. Out of the forty women invited, thirty participated, two refused to sign the consent form, and the remaining women refused to be a part of the research study. Women who refused did so because they feared being “outed” as hiv-positive. Eligibility criteria for these interviews were based upon participants self-identifying as being hiv-positive women of African descent. Recruitment occurred daily. As the lead investigator, I frequently went to social workers for referrals. Social workers asked patients either by phone or in person if they were interested in speaking with an onsite researcher. I depended upon staff members to assist with recruitment and I was unprepared for the high level of reticence from the staff because the study was not funded and participation was non-compensatory. Other recruitment measures included word of mouth and referrals from various divisions in the center. One staff member heard about the study via word of mouth and secretly participated in the study to maintain her anonymity—her co-workers were unaware of her seropositive status. The participants who agreed to complete the interview told me that they would “help me out” and I am grateful for their willingness to share their perspectives with me.

My role as a Black feminist ethnographer has assisted me in some of the interpretations of socially constructed values and traditions, beliefs, and practices of my study group. There were some things that I do not understand in the same manner as study participants because Black women’s experiences and thoughts are not monolithic and vary based on a multitude of factors. Collins (2000) argues that “by being an advocate for my material, I validate epistemological tenets that I claim are fundamental for Black feminist thought, namely to equip people to resist oppression and to inspire them to do it” (Collins, 2000, p. 19). As a Black woman, I hope my work fills in the gaps where some of the voices of hiv-positive Black women have gone unheard.

Most participants live in neighborhoods that have experienced declining socially organized communities of color, with increasing numbers of individuals and families becoming economically insecure (Gentry, 2009; Sharpe 2005). These areas have lost their middle-class base; businesses have moved to suburban locales; drugs and drug trafficking are rampant; residents have no legal means for earning a living wage, and institutionalized sexism and racism are pervasive (Gentry, 2009; Sharpe, 2005). Inadequate institutions (i.e. education and health), substandard neighborhood social services, and lack of employment opportunities exacerbated by intersecting oppressions increase hiv vulnerability for financially challenged Black women.

Research Design

Qualitative methods were employed in a narrative analysis (Reissman, 1993) of feminist ethnographic data over a seven-month period. These emerged from narratives of hiv-positive Black women who were asked to share their perspectives and stated concerns on effective hiv prevention as informed by their lived experience and situated knowledge. Reissman (1993) suggests that “Narrative analysis allows for systematic study of personal experience and meaning: how events have been constructed by active [respondents]” (p. 70). Personal narratives are stories told according to Polanyi (1985) “to make a point, to transmit a message—often some sort of moral evaluation or implied critical judgment—about the world the teller shares with other people” (p. 12). It is not necessarily an exact account of historical fact, but a viewpoint.

Participant observations and semi-structured, one-on-one interviews were carried out. Each interview was audio recorded and interviews typically lasted from thirty minutes to an hour. Interviews were conducted in a closed private room in the Social Services area of the center in a standard office by a single investigator. In an effort to create a more intimate setting I brought a bright silk plant and decorative tray for the interview table, an air freshener, and a radio tuned to a jazz station. The purpose of these accouterments was to summon the feminist kitchen table ritual (Lorde & Smith, 1980). The table in the kitchen is representative of safe spaces for women to commune with one another and I hoped to symbolically evoke this ritual during these interviews.

Procedure

I carried out each interview using a set of pre-determined questions that were read to each participant during her individual interview. When I needed clarity, definition, or elaboration I also asked questions that were not on the form. The questionnaire begins with an opening statement, followed by three sections: demographic information (education, age, marital status, and household composition), perceptions and ideas for hiv/aids prevention, and participants’ perspectives on relationships. I did not ask questions about sexual orientation, drug use, mental health issues, or childhood traumas but some participants did volunteer information pertaining to these topics. The Institutional Review Boards approved this study and all the women who participated signed the consent form.

Even though I interviewed thirty women, after twenty interviews many of the same themes were repeated and little to no new information was attained. The data suggested that all possible themes had been exhausted (saturation point). Participant observations included monitoring an African American women’s support group, interactions with hiv-positive women in the lounge of the center (an area set up exclusively for women living with hiv/aids), and casual conversations with center employees. While recognizing the limits of generalizing from smaller cases, Smith’s (1987) argument that individual studies on discrete cases are also portals into broader social and economic processes. Although it is not possible to include quotations from all participants in this paper, I attempted to represent the many ways of living and being that constitutes the lives of hiv-positive Black women in the broader study (Melton, 2007).

HyperRESEARCH is a qualitative software analysis program that I used to help sort through the data from my fieldwork. I loaded all of the original unedited transcriptions into the software program and read all thirty interviews line by line; as I read them I created codes to categorize data such as depression, stigma, health care, prevention improvements, community outreach, and sex education. There were a total of eighty-eight codes. Next I highlighted the text line by line to match with corresponding code(s). For the following sentence I used five codes: “I can’t tell my parents. Because for some reason, Island people feel when thing like this happen to you, it’s a curse. It’s something you did bad.” I coded this section under silence, stigma, myths, shame, and parenting. After coding every line of all interviews I used multiple categories and ran the software program, which resulted in a variety of themes.

Once the data was grouped by the various themes, I examined it for similar and divergent viewpoints. The themes were chosen based upon their significance to the research question. I transcribed the responses three separate times. The first stage was a verbatim transcription of the data. Audio accuracy was double-checked by using different audio machines for the second phase, and in the third stage the study participants’ speech patterns, meaning, and interpretation were examined closely. I also discussed some of the analysis and interpretations with various peer advocates (hiv-positive contract workers) at the center to verify interview data to ensure accuracy and minimize bias. Each interview was edited minimally for readability. Participants’ speech patterns and dialect were preserved whenever possible.

Results

Face-to-Face Activism

Springer (1999) argues that Black women’s activism can take the form of “direct action” that involves face-to-face exchanges with community members. Springer (1999) suggests that these interactions can include approaching people in venues they frequent. hiv/aids direct action can include paid advocacy in hiv/aids organizations, information booths set up in the community, distributing condoms and information at bus stops, and visiting congressional representatives to advocate for hiv-related legislation. Face-to-face activism in this paper takes the form of one-on-one discussions with family and community, street activism and advocacy, and organizing hiv support groups. Overall, women in this study argue that hiv prevention is more difficult to dismiss when confronted with repeated and consistent messages from a friend or a peer.

Thirty-year old Tracey is an hiv-positive mother of three, and an hiv advocate. She declares, “I just left a place now, forty-five minutes ago, and they was actually doing outreach in an hiv center, and they should be trying to take it and do outreach somewhere where there’s no hiv or people don’t really know about it and, spread the word or talk to people, communicate, just have conversations.” Tracey works for an institution that treats women with hiv/aids. She is frustrated by the exclusionary practices of another facility, one that she visited because they do not go into neighborhoods like Tracey’s where hiv education and prevention is needed. Tracey’s situated knowledge suggests that direct contact, face-to-face interactions with specific communities are critical to curtailing the virus.

Odessa, a mother of three who lives with hiv, laments the changes that have occurred at the center she frequents for treatment. She attends a different institution than the one that Tracey was visiting. Odessa recalls when she was initially diagnosed, the center encouraged community participation in their prevention workshops regardless of seropositive status, so “you get to learn about the virus and stuff.” The center was housed in a trailer and the atmosphere was very informal. The center has since moved to a state of the art facility with door codes for entry and infrequent on-site visits by donors. Odessa recalls some of their activism:

. . . They weren’t doing their job in here! They was out! And about in the streets! Even at the gas station! Even when the gas station was telling them you can’t set up there. They were standing there! [They] were handing out condoms. “Come get this!”. . . But when they got here [new location], they stopped doing it, and it’s like all the women that used to do it on their free time, they’re not here, they quit. . . . Our goal was, it’s outreach to tell these young women, it’s another way. If you’re gonna have sex, use condoms. If you gonna use condoms go get checked first. Because condoms do bust. . . . They had one girl, she was so pretty here, and then she would tell you “I’m positive too.” “Do I look like I’m positive?” She was telling the kids, and that was, that worked so much. But they took it away.

Odessa feels excluded and is frustrated that the staff is expected to work at their desk rather than engage in face-to-face activism on the streets. Because of this expectation, Odessa and the others quit volunteering. In addition to Odessa’s perspectives of being excluded is the possibility that budget cuts reduced resources for community outreach and peer advocates. Odessa and Tracey’s situated knowledge suggests that face-to-face intervention is pivotal to combating hiv/aids in their communities. Direct action is a tenet of Black women’s political participation and valued highly by study participants for prevention outreach to African American women.

Fifi, a forty-five year old divorcee and mother of a little girl, shares her experiences with prevention advocacy in her community:

My husband and I had our little organization in Florida, where we was testing and everything. You get some to come by, but you don’t get them to come back. [I started the program] to reach out to the Black community since we both [are African American]. And no one else was doing it and with us being Black and young ourself, maybe we could get that attention.

In reminiscing about her early experiences as a hiv/aids community activist Fifi notes that formal prevention interventions did not target Black communities and, as a result, she and her husband felt compelled to start something themselves. She is passionate about working in this community: “To show them that it ain’t all about the White. You got some Blacks that can help or put you in the right direction too.” Fifi stresses that her community was not targeted with hiv prevention campaigns and that African Americans were not considered central to the struggle against hiv/aids, even in their own neighborhoods. Fifi thought it important for those in her community to see people like themselves as leaders in hiv prevention, so she became involved and favored face-to-face interactions in her political participation.

Activist Mothering

All women have the potential to be activist mothers because mothering is not predicated upon sexual orientation or bearing or raising children, although this tactic is commonly used by financially challenged women of color. In some instances motherwork combines paid and unpaid advocacy conflating the public and private spheres as a technique for radical social resistance (Naples, 1998). Black women’s political participation is communal and, for them, becoming politically conscious often means understanding that one person cannot be liberated until their communities are also restored and liberated (Nelson, 2005; Mele, 2000).

Newlywed Bobbi is twenty-seven years old with three kids and her activist mothering is with her children. Bobbi’s situated knowledge compels her to use a multilayered approach to educate her children about hiv/aids. She talks to them repeatedly about sex and provides condoms, giving permission to use them.

“You want to look like that?” “No, mama.” “So you know what you better do. Use these condoms right here.” He say, “Okay mama I’m going to use them when I start having sex. I’m gonna use this condom.” “You better, cause that’s how you’ll look if you don’t.” And I don’t laugh with them when I talk to them like that. I let them know it’s serious. It is serious.

Sometimes we go up, when we go to visit my mother-in-law in the hospital and we go to hospice, and it be a lot of sick people at hospice. . . . They let you walk down the hall, but you can peep in the room.

Bobbi wants her children to see first-hand the more devastating effects of hiv/aids and when she visits her mother at the hospital she uses it as an opportunity to go to the infectious disease or hospice unit so her children can see the final stages of aids. Researchers suggest that African American mothers have tremendous trepidation about their children’s safe navigation of hazardous living conditions (Kelly, 2003).

Bobbi and Tess’s standpoints, like those of scholars, indicate that families can be pivotal in intervening and preventing hiv/aids. Scholars note that “family-based” prevention is essential for successful interventions among African Americans (Gilbert & Wright, 2003). Bobbi’s approach is similar to “Scared Straight,” a documentary that exposed juvenile offenders to prison and hardened convicts. She believes that her children and other youth like them benefit more from a dose of harsh reality instead of a toned down adolescent version of real life. The prevention campaign for Black World aids Day 2014 in Miami, fl also used the “Scared Straight” strategy to reach vulnerable adolescents similar to Bobbi’s children. Platform speakers, along with a mortician who provided a white casket as the centerpiece for their discussion on hiv/aids, used raw, frank terms as a means to metaphorically wake up the teens in attendance (Miami Herald, 2014).

Twenty-seven year old Tess, mother of two, discovered she was hiv-positive at sixteen. Tess questioned God, wondering why she was seropositive:

I always ask God, “why in the hell did I get this?” “What did I do wrong?” I’m not the worst, so I am thinking, everyday I think I have this for a reason and my reason is to educate my family ‘cause they’re stupid, they are. My family judged people before getting to know, so everything I learned, I teach them and they’re much better now.

Tess believes she has the responsibility to save her family and to educate them about hiv/aids. Her family stigmatized people with hiv/aids but did not practice any form of hiv prevention in their own relationships. Tess adopts the role of othermother, nurturing her nieces, brothers, and uncles. As an activist mother, Tess’s standpoint is that family is integral to hiv prevention. Kelly (2003) designed a mother/daughter intervention and notes that Black mothers and “other mothers” are best suited to assist young African American girls in grounding their sexual/racial identities. Participants believe that girls follow their mother’s example and advise prevention specialists to employ a “meet them where they are” approach. This privileges individual perceptions of their own experiences rather than researchers perspectives on the real world (Willekens, 1999).

Tammie is a thirty-three year old woman living with hiv/aids who has two children and works at the center that treats hiv-positive women. As a community othermother, Tammie is a nurturer. Her political participation includes paid and unpaid advocacy for family, kin, clients, and the community-at-large. Tammie recalls how she once stayed up until 2:00 a.m. in order to go talk to a teen couple who kiss passionately in the pool area of her apartment complex. She shares how she prepared an hiv prevention kit in preparation for a sex discussion with them.

Tammie states:

Seems like I’m a counselor, I’m a sister, I’m a brother and whatever I have to be to the clients who come in. Spiritual counselor because a lot of people come in depressed, upset or worried about something, and I just try to be that shoulder for them to be on, to lean on. A lot of times I think that I’m basically, just try to encourage them and give them the strength that they need. Because a lot of them don’t have faith just to believe they can make it.

Tammie mothers the clients that come into the center. She nurtures them and allows them to “lean on” her for strength, support, and comfort.

Scholars argue that neighborhoods similar to those of the study participants have experienced declining socially organized communities of color, with increasing numbers of individuals and families becoming economically insecure (Gentry, 2009). These areas have lost their middle-class base; businesses have moved to suburban locales; drugs and drug trafficking is rampant; residents have no legal means for earning a living wage and institutionalized sexism and racism are pervasive (Gentry, 2009; Sharpe, 2005). Intersecting oppressions at the institutional and personal level mean that Black women, as leaders, have to be astute in negotiating racist, sexist, heterosexist, and classist assumptions, and within that context activist mothering is subversive (Mele, 2000). Tammie is a role model for social resistance. When Tammie counsels people waiting in the lobby or gives them advice on employment opportunities she may be assisting women in resisting exclusionary processes that keep them from accessing basic resources for living (i.e., education, employment, food, and health care).

Publically Coming Out as Women Living with hiv/aids

Publically coming out as seropositive or living out loud means being un-apologetic and unashamed, accepting one’s strengths and weaknesses, and living openly as a woman with hiv/aids. To reconstruct or reconstitute one’s life means “to signify the specific identifiable processes that allow women to construct, expand, reshape, or begin anew what it means to be a woman with hiv” (Berger, 2004, p. 16). Life reconstruction is to redesign, enlarge, and start anew as a woman living with hiv. Some Black women living with hiv/aids do live out loud; they are at a certain phase in life and have been able to reconstruct their lives. Berger contends that hiv-positive women who have reconstituted their lives usually do so on two fronts: rehabilitation from substance abuse and the development of a greater sense of themselves as women.

The journey to reconstruct one’s life after a hiv diagnosis is not always a straight path—it may be imperfect and incomplete. Sometimes women repeatedly relapse and/or lose hope (Berger, 2004). Some women have built and employed various resources (mostly nontraditional) and utilize their personal agency, experience, and wisdom to politically participate in their communities and to live out loud. Living out loud is particularly noteworthy because hiv-positive Black women’s political struggles do not necessarily make it safe for them to publically reveal their seropositive status. Reconstituted women have publically come out with their seropositive status because they recognize the gravity of living in silence.

Thirty-six year old Hattie is single, childless, and lives with hiv. She expresses her standpoint on living a reconstituted life:

I deal with a lot of different people with the virus. But they will look at me and say, “How could you be so open like that?” I tell ‘em, I say, “Honey, cause I’m not the only one!” I’m not the only one. Until you open, you’re gonna stay stressed. . . . I say, “Baby, you can’t do it alone. You need support. We need support.” I just try to make my little meetings or whatever. If I don’t talk. Maybe something I’ve been done heard I will take with me. What I don’t need, I’m gonna leave it. . . . Life is beautiful, especially when you have recovered from drugs and alcohol and your right mind has come back with the help of the Lord. I wouldn’t change it for the world.

Hattie reconstructed her life; she’s recovered from substance abuse and conceives of life on her own terms and not by the dictates of others. Gentry (2009) suggests that public drug rehabilitation facilities are predominantly driven by treatment procedures for heroin rather than crack cocaine. Crack cocaine is linked to the incidence of hiv/aids in African American neighborhoods (Gentry, 2009; Sharpe, 2005). Black women are disadvantaged by treatment centers whose rehabilitation efforts are geared towards a substance they are not using as well as by a lack of gender and cultural sensitivity (Gentry, 2009). Hattie’s statement is powerful because she has succeeded in reconstructing her life and now lives out loud as a woman with hiv.

Norma, engaged to be married, has one child, and both are seropositive. Spirited Norma declares that she is going to live and survive:

I know what my situation is. I’m not, and when I tell a person my status, and they don’t like it. There go the door. I’m a grown woman. I take care of myself. I’m not gonna be around here wondering, okay, I got to hide this from this person. I got to hide my medicine. My medicine sit as big as day on my bed, and my son medicine in the cabinet. . . . And if you don’t want to be in my house you don’t have to be here. You don’t wanna eat my food, you don’t got to eat my food. I’m gonna live. I’m gonna survive. . . . My doctor said, “Whatever I been doing continue to do it cause it works for you,” and I’m doing exactly that.

Norma’s perspective is to live out loud because it creates peace and improves her health and wellbeing. She intentionally moved away from her old neighborhood in order to change her life. Williamson (2003) argues that transformation is dynamic and changing and may or may not improve an individual’s life and the results may or may not be lasting. Transformation is also impacted by race, class, and gender practices experienced in daily life (Williamson, 2003). Norma, like others who grew up with income inequality, numerous tenacious stressors throughout their lives, and several traumatic events, falls outside of traditional concepts on stress and coping (Williamson, 2003). But scholars note that hiv-positive Black women living in circumstances similar to women in this study who remove themselves from their stressors may have more success in sustaining their transformation or reconstituted lives (Gentry, 2009; Williamson, 2003).

Mary is thirty-three and works as an hiv/aids advocate. She thinks that hiv-related stigma is so overarching that even those who work in facilities dedicated to preventing, treating, and caring for people living with hiv/aids still experience discrimination at work:

There’s women who work in the [hiv/aids] place I work in who are living with hiv, and even though they’re working in this field, it doesn’t mean that they’re open to speak about it to other people. [Thus,] I think it should be like the gays and lesbians, having a Coming Out Day. And we all just walk in the park. . . . Have a Coming Out Day or something to make it unify [to create unity and subvert hiv-related stigma].

Mary laments the fact that even while working to treat and prevent hiv/aids, women living with hiv hide their seropositive status because they fear the negative impact of hiv-related discrimination and stigma (Berger, 2004; Melton, 2007). The connection between failing social structures for Black folks and multiple hiv-related stigmas constrain Black women’s political participation (Berger, 2004).

hiv-positive women in a Detroit study by Berger (2004) placed strong emphasis on hiv-positive people speaking their truth publically: “I always say you can turn a negative into a positive. I say the same thing what you did out there [on the street, or in the life], you can do it in recovery, but you just do it in a different way . . . You got to use everything you know when you’re hiv-positive” (p. 182). hiv-positive women encourage other women to use whatever they can to live more gratifying lives and to facilitate social change. Mary encourages women to be assertive, to be bold, to come out, and to use social resistance to stand up to hiv-related stigma.

Living as a reconstituted woman, argues Berger (2004), can initiate the emergence of a personal “public voice” (p. 16). Personal voice is crafted by women who embrace their serostatus, accept the political and gendered consequences of speaking out, name their oppressor(s), and claim their identity; a decidedly feminist principle (Berger, 2004; Collins, 2000). For example, Norma named her oppressors (people who shun her because she is hiv-positive) and, regardless of being alienated, she calls herself a survivor. Mary named some of her co-workers as oppressors and suggests that hiv-positive people collectively come out and claim their identity as subversives. Ultimately, ideologies that call for women to come out are feminist (even if the women themselves do not self-identify as feminist). I believe that one of the most profound experiences that an economically challenged, hiv-positive Black woman can do is to come out. Reconstituted participants note that the best way to engage politically is to rebelliously oppose the status quo of shame and silence in order to restore themselves, to “live,” to “survive,” and to have a “beautiful” life.

Discussion

In this paper, I situate hiv/aids into the larger dialogue about African American women’s struggle for civil rights, equity and parity (Hammonds, 2009). Participants’ moving narratives demonstrate that African American women living with hiv/aids are engaged in social resistance to find solutions to restore themselves and their communities from the effects of hiv/aids. Intersecting oppressions of gender, race, and class may exclude Black economically insecure hiv-positive women from institutions and formal processes for political work. Thus, hiv-positive African American women activists use their everyday resources such as face-to-face exchanges (direct action) and activist mothering (Black women’s age-old strategies) to advance social change (Gilkes 1994; Naples, 1994; Springer, 1999).

Although women in this study adapted face-to-face interactions and activist mothering from their foremothers, their accounts reveal an aspect of Black women’s political participation that may be unique to hiv-positive Black women activists. Publically coming out as women living with hiv/aids (living out loud) may be a new activist strategy that can be added to the literature on Black women’s community-based political participation. Living out loud, a political act unto itself, is revolutionary—a radical and subversive political act. hiv-related stigma and discrimination can be so damaging that it can disrupt women’s efforts toward solidarity by categorizing some Black women as deserving of a seropositive diagnosis and others as victims (Hammonds, 1997). To proudly confront these stereotypes, harsh character judgments, and gender/class hierarchies and to challenge patriarchal constructs is a subversive act unto itself.

Intersectional stigmas and interlocking oppressions work together to give hiv-positive women a distinct position to begin political participation (Berger, 2004). Rhonda, a forty-two year old hiv-positive woman and aids advocate notes that some Black women “Don’t want nobody to know they’re hiv-positive, and they’d just rather die and die alone” than divulge their seropositive status. Exclusionary systems work simultaneously with the stigma of hiv/aids for study participants. Women in this study are also ranked by experiences such as class, drug use, sex work, and past incarceration and so forth. These structures exist in conjunction with social punishment for violating certain moral codes within African American culture. Once these stigmas and experiences are coupled with being seropositive, hiv-positive activists may experience prejudice and discrimination from their own community even while working to restore it. To live out loud despite being marginalized from the margins is extraordinary. Black women activists of the past did not platform their social protest from the distinct location common for study participants and doing so adds a new and novel dimension to the political participation of African American women.

What is similar for past activists and study participants is Black women’s tactic of establishing political agency based upon their cultural and regional connections (Mele, 2000). “An expansive definition of politics underscores the inherent limitations of the public/private dichotomy that privileges formal, organized actions over less obvious but potentially more effective and subversive practices” (Mele, 2000 p. 66). Like other Black activists, women in this study also blur the lines between the public and private sphere and challenge traditional formal approaches to political participation. It is this sense of working with exhausting and utilizing all resources in a particular place and time that traditional hiv/aids prevention campaigns and interventionist have missed. Political, research, and formal social discourse has overlooked hiv-positive Black women as a rich resource for creating, designing, implementing, and enacting best practices for thwarting hiv/aids among African American women.

By analyzing hiv-positive women’s activities using an intersectional lens of Black women’s political participation (Berger, 2004; James, 2009; Naples, 1998), Black feminism (Collins, 2000), structural factors (Glick, 1992; Glick et al,. 1994; Singer, 2001), and Black women’s vulnerability for hiv infection (Gentry, 2009; Gilbert & Wright, 2003; Sharpe 2005), a new picture emerges of hiv prevention work and organizing. Traditional aids activists could take a page out of the Mound Bayou ms study (Nelson, 2005) where Black women community workers used a comprehensive approach to health and fought for improved employment, food, education, and housing as health activism. A similar approach to hiv/aids activism could result in comparable success. aids activists like those in the study could be engaged in hiv/aids activism while fighting and organizing against the increase of gender-based public school suspensions of Black girls, medical discrimination, and not just condom distribution. hiv-positive Black women’s activism challenges what constitutes formal aids activism and warrants further investigation.

Conclusion

The canon on Black women’s activism argues that definitions of political participation encompass the wide range of activities in which African American women engage, including grassroots organizing, direct action, community work, and activist mothering. This project focuses on the political participation of hiv-positive Black women living in communities that already lacked an economic base, social capital, resources, and institutional structures before the hiv/aids epidemic, working to restore themselves and their communities. I illustrate the personal agency of seropositive Black women through the narratives of thirty hiv-positive Floridian Black women and situate their political participation in the fight against hiv/aids within the canon of Black women’s political participation around these emerging themes: 1) face-to-face activism 2) activist mothering, and 3) publically coming out as women living with hiv/aids.

Gay men’s aids activism is well documented in the literature (Cohen, 2014; Dolinsky, 2013; Ramirez-Valles, 2014; Stover & Northridge, 2013). As it pertains to hiv/aids they are in decision-making positions in organizations and institutions in the community, government, and public health. hiv-positive Black women are mostly missing from the equation. Since gay seropositive men hold high positions in formal prevention and intervention, hiv-related stigma is not the culprit in the dearth of seropositive African American women. If stigma is a non-issue, then is it possibly gender, race, or class discrimination? Is it possible that overlooking hiv-positive Black women is due to fear that they will demand a larger share of the already too small hiv/aids budget? Regardless, this lack of inclusion of hiv-positive Black women has hindered the ability to find viable solutions in the struggle against hiv/aids. Historically, Black women have been at the forefront of major community crises and, have used the tenets of Black women’s political participation to address and often resolve these crises; Black women’s political participation works.

Study participants’ narratives demonstrate that vital work is being done even though it may be invisible to many in the public health arena. African American women’s organizing around hiv/aids, however, is an emergent topic and might be aided with multiple and more extensive studies. Participants’ standpoints call on public health officials, the medical community, research scientists, and interventionists to use the situated knowledge of hiv-positive Black women who are already fighting to reconstitute their lives, reclaim their communities, and turn around the hiv/aids pandemic in Black America.