From “at Risk” to Interdependent: The Erotic Life Worlds of HIV+ Jamaican Women

Introduction: HIV-Positive Jamaican Women’s Erotic Lives

“Mi nuh know bout you but mi nuh sick!” [“I don’t know about you, but I’m not sick!”]1 exclaims Donna—a 24-year-old HIV-positive community organizer and working-class mother of one during a conversation about relationships, sex, and illness with a group of other young HIV-positive women.2 She is a dark-skinned, single mother from Spanish Town, her hometown, the capital city of the neighboring parish St. Catherine, and the second largest town in Jamaica. Her eyebrows raised and finger wagged as she reenacted an internal dialogue she had during a recent intimate encounter with a male partner. She exclaimed: “If mi nuh feel like mi wan tell yuh [mi HIV status], weh yuh tink mi do? Mi mek sure seh mi wear fucking condoms!” [“If I don’t feel like I want to tell you [my HIV status], what do you think I do? I make sure I use fucking condoms!”]. Donna continued by sharing the ways she reconciled her desires for intimate connection and sexual fulfillment while living with a socially stigmatizing, physically deteriorating, and emotionally debilitating marker that is potentially lethal.3 Participating in the youth-friendly, women-centered networks of EVE for Life (EFL)—Jamaica’s first HIV psychosocial support and advocacy organization for HIV-positive young mothers as well as girls and women who experience sexual violence—served to rejuvenate Donna’s desire to live despite her stigmatized embodiment. The affective communion that Donna shared with other women enabled her to contest the exclusionary boundaries of social belonging and political organizing and leadership around HIV.

Donna’s obligations as an organizer and mentor of other young HIV-positive women form a broader trajectory of her self-discovery. Diagnosed with HIV during the pregnancy of her first child in 2011, Donna describes then entering a dark period where she felt like “mi dead now!” [I am dead now!] Within four years of joining EFL, Donna has established herself as a professional mentor to several women in her Spanish Town community who have recently been diagnosed with HIV or who lack the proper knowledge to protect themselves. In many ways, she has reconstructed her life, focusing on her work in HIV and youth empowerment in urban communities, raising her 4-year old daughter, and working as a peer mentor as she takes free leadership and business classes at a local training institution supported by an international development agency. Often viewed in her neighborhood as a sex educator, Donna is called upon community members and friends to provide condoms and advice about relationships and sex.

In various ways, Donna’s participation in EFL’s psychosocial support groups and her community health work with other HIV-positive women have fostered interdependent communities of care and belonging. Importantly, they counter the ongoing neglect of culturally appropriate approaches to HIV among marginalized Black women. This is but one example of the important role of women-centered networks in the intimate life and health activism of young Black women, and the ways in which they allow women to articulate ideas about intimacy, community-building, and bodily autonomy that are relevant to their daily needs. The women-led space of EFL and its ascendance as an HIV women’s organization with transnational and diasporic dimensions produces social intimacies that heighten racial and gender consciousness as they cultivate homosocial networks of care.4 For HIV-positive Black Caribbean women, questions of health and sickness as well as exclusion and marginalization, implicate intimacy in uncomfortable matters of global inequities and illness. These questions complicate how women interpret their diagnosis and experience sex and sexuality. Importantly, they also deeply inform the process by which women become conscious of their social position as HIV-positive people who are politically active by maintaining different institutional ties and performing overlapping roles as community organizers, public speakers, advocates, and peer educators known as “Mentor Moms” and “Mentee Moms.”5 To date, the political uses of women’s intimacies in relation to HIV in public health discourses remain under-examined and largely ignored.

Even as black feminist scholarship and artistry has long engaged Black women’s intimate lives, there is limited work on the disproportionate impact of HIV and AIDS on Black girls and women, especially those in non-U.S. contexts.6 The last few decades of the pandemic have seen a radical transformation in biomedical interventions and a relative increase in new funding schemes and initiatives of international organizations, agencies, and governments of more resourced countries in North America and Europe.7 Yet, in the Caribbean region and in Jamaica, the uneven distribution of resources for HIV prevention for women, a population often framed as a non-priority, remains a glaring erasure in local and global initiatives. As current models emphasize approaches that advocate targeting the behaviors of specific groups known as “high-risk” or “key populations” such as “men who have sex with men (MSM)” and “sex workers”, programs and research have yet to garner complete understandings of the intricate sexual and social dynamics that can make them effectively reduce HIV among non-normative groups such as Black gay men, trans women, Black girls and women.8 Furthermore, such particularistic agendas conflate sexual orientation with sexual practices, which ignores the spectrum of intimate exchanges among various individuals, thereby rendering many HIV interventions targeting young women ineffective. As a result, the sociocultural realities of HIV-positive women remain under-examined, and little is known about the life worlds that give rise to the everyday knowledge and intimate connections women employ to develop and sustain community-driven actions that contest gender inequalities and stigmatization associated with the disease.

In this feminist ethnography of HIV-positive women’s intimate and political lives in Kingston, Jamaica, I delineate how women in activist organizations develop and cultivate HIV/AIDS care strategies through women-centered networks. I read these networks as intentional communities of interdependence and psychosocial care, rather than simply invisible “at-risk” groups or passive victims subjected to “a paralyzing plague.” I contend that the homosocial intimacies that characterize these networks of care reflect an “intraventive” cultural practice and knowledge, a term that Marlon Bailey uses to describe the organic ways community members represent themselves individually and collectively.9 Furthermore, they reveal how the embodied knowledges of HIV-positive Black women challenge pathologizing public health and academic discourses, while also serving as conduits for enhancing and extending theories about bodies, sexuality, power, and intimacy. By offering a culturally-specific exploration of the socioerotic lives of working-class HIV-positive Jamaican women, this paper concludes with a discussion about how centering our analysis on Caribbean and Black women expands the geographic and thematic scopes of studies of race, sexuality, and HIV/AIDS.

Rarely are Black women, especially those who are poor, working-class, and HIV-positive, considered leaders of social and political movements, much less political theorists in official discourses. Yet, Caribbean theorists and activists have long engaged the gendered and sexual possibilities of both women’s cultural and political movements.10 While HIV-positive Black women have been at the very heart of struggles in the hemisphere for quality HIV care and against intersectional forms of structural vulnerabilities that heighten women’s emotional, psychic, and sexual trauma, they remain excluded in political discourses and academic scholarship on HIV activist history and black political movements. Looking to the political action and intimate practices in the daily lives of Black Caribbean women will offer sociocultural models for how to live with, organize around, and prevent HIV/AIDS. Importantly, this focus deepens the cultural knowledge of Black women’s contributions to the transnational political dimensions of the pandemic, which can reveal ways to leverage the labor and networks of activists and grassroots organizations to reduce the racial and gendered disparities of HIV/AIDS. 

This work is animated and enabled by my own subject position as a young black woman and a Jamaican American scholar. My complexly constituted social and political positionality facilitated both my entry into the scenes illustrated throughout this article and my ongoing relationships and interactions with interlocutors. This entrance embraces Rosamond King and Angelique Nixon’s use of the concept of “embodied theories” as a feminist methodology that acknowledges the materiality and affect of the body as well as the spatial and intellectual location of the scholar while being respectful and responsive to the communities we study.11 It is this complex “diasporic outsider-within subjectivity” that has guided my navigation of compounded erasures as I work to address the inattention to Black women in general, and Caribbean women in particular in studies of black politics, gender, and HIV/AIDS; to decenter the U.S. in studies of racialized sexuality, power and inequality in the Americas; and to illuminate the significance of HIV-positive Black Caribbean women’s lives to intellectual and political work that connects racial, gender, and sexual justice more concretely.12 My own status as HIV-negative further informs this “outsider-within subjectivity” as it has shaped the privilege I have accessed and leveraged to navigate state institutions, organizations, and public spaces with HIV-positive women. It is through these embodied differences that I intimately experience how Black women’s bodies accentuate the continual struggle between the subject and the abject, the normal and the deviant.

I use the erotic to describe how illness can cultivate a range of intimacies that become a form of black feminist agency and community-building through support groups, mentorship relationships, and grassroots community activities.13 By leveraging the multidimensional dimensions of the erotic in Black Caribbean women’s lives, I embrace Lamonda Horton-Stallings’ use of culturally-specific Afrocentric concepts such as “funk” and “stank” to describe the black body in labor and to foreground pleasure and community that transcends forms of discipline and structures of biopower.14 My use of the term describes how women’s lives generate knowledge about the everyday uses of sexuality that enable them to use their bodies as tools for connection, pleasure, support, and mobilization. This form of epistemic practice is designed not only to resist the ignorance about HIV and other STDS by providing accessible medical knowledge, but also to encourage women to learn their own bodies and sexualities in order protect their health while affirming their desires and aspirations. As active sites of knowledge production and dissemination, HIV-positive Jamaican women’s bodies and relationships with each other reveal their embodied knowledge as an instructive social and political resource that enables a radical representation of women on their own terms.

locate my understanding of the critical links between the erotic and illness in women’s lives within recent Caribbean and black feminist scholarship on sexuality, pleasure, and abjection. As this recent work evolved expansive visions of Black women’s sexual politics and black sexual subjectivity, sites of abjection—the repulsive and undisciplined—became grounds to model new subject positions, unsettle cultural ideals, and transform rigid norms of gender and sexuality.15 For example, Mimi Sheller elaborates on a “citizenship from below” which contextualizes how subaltern Caribbean sexual subjects appear, are silenced, and contest and/or reproduce hegemonic perspectives.16 Gloria Wekker’s notion of “mati work” provides fertile ground to engage the specificities of working-class Afro-Caribbean women’s bodies and sexual practices beyond the normative sensibilities of Euro-American heterosexuality. Jennifer Nash’s concept of “ecstasy” and Mireille Miller-Young’s notion of “brown sugar” provide incisive examinations of the performative dimensions of Black women’s sexual labor in ways that develop radical notions of bodies and sexual intimacy. Similarly, Juana Maria Rodriguez, Lamonda Horton-Stallings, Rosamond King, and Jacqui Alexander’s discussions about the radical implications of women’s outlaw sexuality help intervene in paternalist social and political contexts. I use this body of work to uncover tensions between the erotic, subjectivity, and colonial racial and sexual inequalities. Building on this opening, I further explore how differently located women in various cultural contexts negotiate political claims alongside their pursuits for erotic connections beyond the pathologizing impulses of state and institutional forces.

Part 1: Expanding Theories of Intersectionality and HIV/AIDS

As women’s experiences reveal, an ethnographic study of the intimate lives of HIV-positive Black Caribbean women extends theories of sexuality, intimacy, and the body in three primary ways. First, it empirically studies how intersectionality unfolds in the lives of Black women living with and impacted by HIV and AIDS, which augments the mostly theoretical analyses of black women’s sexualities and agency. In addition to adding the lived realities of Black women to the ethnographic record, it brings into focus the political significance of the Caribbean in studies of black politics, sexual cultures, and health. And finally, it demonstrates how illness and racialized sexuality matter to the body and quotidian life, shaping women’s physical and psychic realities as well as their relations with and among other women. Collectively, these contributions spotlight a reservoir of cultural interventions too often revoked of legibility in mainstream scholarship and movements.

Recent scholarship on race, gender, and sexuality has used intersectionality as a framework to illustrate how illness and marginalization matter to black sexual politics. Cathy Cohen’s canonical study of how cultural elites and political figures used the stigma of HIV/AIDS to internalize and replicate racial, gendered, and class hierarchies within African American communities revealed the diverse responses to highly moralized AIDS discourses.17 Additionally, political scientist Michelle Tracy Berger uses the concept of “intersectional stigma” to offer a model of how to empirically study how marginalization constrains Black and Latina women’s access to resources and services, ultimately shaping their health trajectories and political participation.18 Marlon Bailey’s ethnographic exploration of the performance of racialized, gender, sex, and sexuality in the development of agentive responses to HIV uses the body as a site to develop expansive ways to study the culturally-specific expressions of sexuality and desire. According to Lyndon Gill’s discussion of queer Afro-Trinidadian men’s community organizing, the intimacy of activism is a galvanizing political, social, and sensual force in an array of relationships among male participants in a local organization. The radical “uses of desire” and sensuality are evident as HIV-positive and HIV-negative queer Afro-Trinidadians explore their sexual desires and social intimacies through “touch” as opposed to the chaos-inducing rhetoric of contagion.19 Similarly, Darius Bost’s exploration of the Black gay cultural renaissance through Black gay men’s literary and cultural work reveals a legacy of their deliberate sociality and community-building that contests their portrayal as illegible victims in the face of antiblackness and antiqueerness. It is precisely this insistence on holistic living and community that foregrounds my documentation of Black women’s movement building through their embodied connections and political claims. It is this investment in new vocabularies of intimacy and sexuality that bolsters Donna’s opening statement: “Mi nuh sick!” [“I’m not sick!”]. Like other women, she is invested in a sensual activism that moves beyond the exclusive emphasis on contagion and disclosure in HIV interventions, which allows women to pursue interdependent relationships and desires that emerge in their networks.

This expansive engagement with intersectionality activates my discussion of both Black women’s embodied experiences and their relation to institutional, legal, and social forces that enable their invisibility and vulnerability.20 Collectively, these works collapse the divisions between black politics and black sexuality, demonstrating how HIV necessitates more complete analyses of Afro-diasporic communities and the ways in which these communities have responded to seemingly disparate spheres of the sexual and the political.21 Amidst the lack of qualitative studies of HIV that center ethnographic approaches, a culturally-rooted and empirically-driven account of HIV-positive Black women’s subaltern ways of knowing can help unpack the nuanced intersections of racialized gender, sexual, and class differences in the experience of illness and marginalization.22 As the claims of Donna and other women demonstrate, these counter modes of intimacy and self-presentation offer possibilities for marginalized women to carve out space for self-making beyond the delimited sites of public health and HIV advocacy that emphasize respectability and individual self-sufficiency.

Part 2: Women and HIV/AIDS in the Caribbean

Donna’s opening statement and life story highlight aspects of the lived experiences of a population that is increasingly impacted by HIV—young Black women between the ages of 15 and 26.23 Globally, AIDS-related illnesses remain the leading cause of death for women of reproductive age and those ages 15–24 years account for a disproportionate number of new infections.24 Even though the Caribbean has both the highest incidence rates of reported AIDS cases and HIV prevalence rates in the Americas, second only to Africa, little is known about the region’s significance in curtailing the scourge of HIV/AIDS in Black communities globally. Although Jamaica was touted as an emerging Caribbean HIV success story in the early 2000s, in recent years, it has faced high prevalence rates among “MSM,” transgender men and women, and “low-risk heterosexual” women.25 Girls between the ages of 15 and 19 are three times more likely to be infected than boys their age, while women aged 20–24 are one and a half times more likely to be infected than men in the same age group.26 These historic trends align with existing data on HIV prevalence in Jamaica that shows that girls and women living with HIV increased dramatically from 30 percent of reported cases between 1980 and 1989 to 46 percent between 2009 and 2012.27 These trends also highlight the growing disconnect between technological and medical advances and disease burden among Afro-diasporic women, which invites further exploration of the intimate racial and sexual dynamics that mediate HIV’s impact on women’s everyday lives.

That young Black women are disproportionately represented in the global rates of HIV and AIDS is not a phenomenon unique to Jamaica. Working-class women throughout the African diaspora maintain a structurally disadvantaged position in comparison with people within non-Western and Western contexts in ways that play out in the domains of sexuality and health. Recent scholarship on gender inequality and HIV/AIDS have demonstrated how structural inequalities and women’s economic dependence on men reconfigure the social landscape of HIV risk in ways that disproportionately impact women.28 Collectively this work has aimed to understand HIV/AIDS organizing as “part of a broader process of social transformation, aimed not merely at the reduction of risk but at the redress of the social and economic inequality and injustice that has almost universally been found linked to increased vulnerability” to HIV and AIDS.29 The marginal positions of women in the underclass and in the lower strata of the working class within both the economy and the political apparatus of the state reflects the gendered and racialized inequality of Jamaica’s political economy.30 As Gina Ulysse’s notes, the enduring legacy of colonial racialization in contemporary Jamaican society creates deeply rooted racial and gender hierarchies that are color-coded and inflected upon the bodies of Black working-class women.31 Within this context of class and color stratification, HIV, as both a medical condition and a sociocultural reality, plays a critical role in how women engage their embodiment, political agency, gender inequality and general well-being in ways that demand greater understanding of how women’s intimate lives evolve care practices and political strategies necessary for survival.

Two omissions impact the current dearth of research on Black women and HIV: the lack of culturally-rooted explorations of black sexual politics and black women’s sexualities in Black Studies as well as the lack of interdisciplinary frameworks of race, gender, and sexuality in public health interventions and HIV prevention research. Black cultural studies scholars have continually noted how the lack of informed research and interventions on HIV/AIDS in Black communities contribute to the disproportionate rates of the pandemic among Black people in the U.S. For example, Cathy Cohen’s discussion of how disenfranchized groups respond to restrictive cultural mores revealed the failure of both black elites and Black Studies to address how HIV/AIDS and crosscutting issues–issues of identity that extend beyond race and that disproportionately affect certain segments of marginal groups–complicate societal privilege and oppression within racial and gender hierarchies.32 Patricia Hill Collins observed that these issues raised by the HIV epidemic suggest the need to move beyond the restrictive emphasis on “individual risk” and toward progressive understandings of black sexual politics that engender new conceptualizations of body politics, relationships, and community.33 Yet, few efforts leverage Black Studies as a site of cultural inquiry to address the Black AIDS pandemic because of the ongoing distance between academic researchers and community and divisions between theoretical and practical knowledge.34

It is precisely because of the deep familiarity of Afro-diasporic people with stigmatized embodiment and Black Studies with challenging hierarchies of knowledge that we must heed these clarion calls to explore the gendered, racial, and sexual dimensions of HIV. Additionally, because Afro-Caribbeans, specifically Haitians, were the only ethnic groups viewed inherently susceptible to the disease, it is imperative to engage the Black Caribbean in these discussions about the cultural practices used to trouble dominant AIDS discourses and practices.35

The Caribbean and Latin American studies literature on adolescents and HIV has represented youth sexuality in the region as problematic, socially pathological, and politically deficient. Kamala Kempadoo and Oneka LaBennett and numerous others have critiqued this social science approach to the intimate lives of young Black women who are often described as “at-risk” for social, psychological, and physical problems such as teenage pregnancy, drug use, and participation in violent crime.36 This assumed degeneracy frames women as “carriers of disease,” which eludes the structural, global, and quotidian dynamics that shape their perceptions of and responses to inequality and HIV/AIDS. In Jamaica, public health discourses and research frame young women through conversations about the early sexual initiation of girls, poor women as “vectors of disease” responsible for the spread of HIV to men and their children, and transactional sexual relationships as public health problems and reproductive health concerns. The hypervisibility of Black Jamaican women’s bodies and sexualities work in tandem with their invisibility as subjects worthy of political recognition, opportunities for social mobility, health resources and related investments in well-being. Even though Jamaica has both a generalized HIV epidemic in the population and a concentrated epidemic among specific populations such as queer men, sex workers, and young women, women’s label as “non-key populations” denies them access to critical funding sources for prevention work, research, and HIV-related services.37

Pathological descriptions of the intimate lives of girls and women emphasize Caribbean feminist Kamala Kemapdoo’s observation that the reductionist biases in HIV and AIDS have undermined more complete understandings of the social and political lives of Caribbean youth.38 I heed Kempadoo’s clarion call to interrogate the “uncritical problematization” of Caribbean youth’s “sexual praxis,” which she describes as “the ways in which sexuality is made visible through behaviors, activities and interactions between people, in relations, and in the ways in which desires are actualized”.39 This expansive focus challenges the surveillance and regulation of marginalized Black youth as it intervenes in the elisions in sexual health research and HIV prevention studies by articulating Caribbean youth’s agency and desires beyond traditional narratives of innocent children or deviant young adults.40

As Jamaica becomes part of a global network of lowand middle-income countries that comprise the growing share of the global HIV/AIDS burden, more sophisticated analyses are needed to capture how the pandemic shapes ontologically ways of being in the world and the range of bodily experiences in culturally inflected ways. The country’s weakened health systems infrastructure has made the provision of prevention services and resources for treatment and care challenging. Growing socioeconomic inequalities further strengthen the country’s dependency on international aid organizations to implement public health and social welfare programs. For example, the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) has facilitated the country’s initial expansion of HIV prevention efforts, which enabled the implementation of HIV treatment and prevention and the development of educational access programs for antiretroviral (ARV) treatment for people living with HIV and AIDS in 2004. The President’s Emergency Plan for AIDS Relief (PEPFAR) has provided resources to support large-scale prevention, treatment, and care against AIDS, malaria, and tuberculosis. The recent investments of GFATM of $14.9 million for 2016–2018 and PEPFAR of $5 million for 2015–2016 have strengthened the roles of these international agencies as critical players in the country’s civic and social processes.41 Beyond its typical framing as a site of global networks of tourism and travel, Jamaica, and the Caribbean more generally, are cultural spheres that are not new to either imposed cultural and economic agendas or transnational forces and circuits of ideas about blackness. Ultimately, the growing influence of global health organizations often gives donors and agencies increasing power to shape the agendas of local organizations, women’s lives and their access to care and political opportunities.42

The transformative work of Caribbean feminist organizations have emerged in this space. Founded in Kingston in 2008 by two Jamaican women, Patricia Watson and Joy Crawford, EVE for Life (EFL) emerged in this complex terrain of health and inequality during the years when women shouldered the highest numbers of AIDS-related death.43 The exclusion of women in HIV care and aid was the impetus for the local actors and leaders of EFL to implement interventions for young women living with HIV and AIDS. As the product of growing efforts to expand the gendered dimensions of the national HIV/AIDS response during the 1990s, EFL provides a continuum of psychosocial care and support services that includes gender-specific services of the Mentor Mom Initiative (MMI). This initiative uses mentorship between women who are newly diagnosed and those who have been living with HIV for a longer time to meet the developmental and health needs of women and girls. In particular, the program remains a national model for holistic approaches to HIV and a key part of EFL’s cross-regional, cross-sectoral, and intergenerational organizing work. Buttressed by their connection to the local public health system and community clinics, EFL has been successful at reaching working-class, underemployed, and unemployed urban Black Jamaican women. They are not only inadequately attended to by the vast majority of the nation’s health care and HIV/AIDS-related initiatives, but are also overrepresented in populations needing the sexual and reproductive health services of the under-resourced public health system. EFL’s grassroots origin is sustained through its community work with the MMI, which continues to be a collective space for mentorship, intergenerational knowledgesharing, training and resource-sharing among its participants.

Part 3: A Politics of Interdependence: Holistic Care Beyond Mere Survival

As a Mentor Mom of the Kingston chapter of EFL at the time of the interview, Donna suggested that the relationships developed among women expanded the nature of HIV prevention work that overemphasized disease progression and medical terms. She states further: “Wi did want fi help people live, jus coz being HIVpositive yuh nuh dead. Yuh see, coz we formulate around young ooman, it’s like it give wi di drive. It start fi give me drive when mi see di things dem do. Dem did do sex ed way, way differently, and not only dat, but wid younga people. We affi show dem dat dis cyan happen, yuh know, but yuh still cyan smile … and people are here fi help yuh get thru it.” [“We [wanted] to help people live, just because being HIV-positive you are not dead. You see, [because] we formulate around young women, it’s like it gives us the drive … It started to give me drive when I saw the things they were doing … They were doing sex ed way, way differently, and not only that, but with younger people. We have to show them that this can happen, you know, but you still can smile … and people are here to help you get through it.]

The collectivity displayed by EFL participants like Donna presents a striking contrast to the public HIV/AIDS care model that prioritizes individualism, selfhelp, and self-sufficiency in ‘end of crisis’ narratives circulated by global health organizations such as USAIDS, UNAIDS and GFTAM.44 Rather, the MMI of the EFL organization is steeped in a rich cultural context of community care that embraces the value of interdependence and psychosocial care in the face of coercion, stigma, and social exclusion.45 In practice, these values and commitments revolve around a circular model of care and support that is based on the work of staff and participants who are “Mentor moms”—educators of HIV and sexual reproductive health—and “Mentee moms”—newly diagnosed women and students in training. The Mentor Mom program remains paramount in the body of EFL’s work and serves as a mechanism for EFL to assess and address the particular needs of teenage mothers and young adult women, its capacity to meet those needs, and the nature of its relationship with communities most in need amidst declining funding streams for HIV care. Its presence as a social site and political entity has bound women in intergenerational relationships where they could convene and connect in similarly oriented communities. This relational model for understanding women’s experience with illness has become a central organizing mechanism that generates interpersonal relations, desires, and emotional states which have formed the basis of collective relationships.

As Donna described how her entrance into the community of women at the EFL organization fostered her drive to actively participate in a leadership role, she reveals how her health status and intimate connections to other women catalyzed her self-definition while cultivating her organizational ties. This fellowship with other HIV-positive women similarly committed to community health work around HIV awareness and reproductive health education also extended beyond the space of EFL. Mentor Moms also provided support for HIV prevention among HIV-negative women by leading educational workshops at local prenatal clinics. In a vivid retelling of the affirmative reception of the workshop by clinic attendees, Donna notes: “How we did do [condom demonstration], people enjoyed it, even di oral [demonstration] and odda tings … [Ooman] don’t discuss oral sex so when wi start dweet and show we did try fi bring it out, and they were like, ‘Fi real! Luk how she dweet, look how dat girl put on condoms!’ Some people didn’t even know seh there were female condoms.” [“How we did [condom demonstration], people enjoyed it, even the oral [demonstration] and other things … [Women] don’t discuss oral sex so when we started to do it and show we tried to bring it out, and they were like, ‘For real! Look how she do it, look how that girl put on condoms!’ Some people didn’t even know there were female condoms.”]

Beyond the sexual health workshops, a politicized form of community building emerges in the interdependent communities of HIV-positive Jamaican women that incorporates care for self, care for other women, and care for community. The role of interdependence in these articulations and expressions of care incorporates both professional obligations and informal care work. Donna remarked that her and her Mentee Mom, Tora, a 21-year-old mother of two, share a bond beyond the official provision of services outlined in her formal contract of Mentor Moms that involved both practical and intangible support for engagement in more holistic health-enhancing behaviors and practices. In my conversations with Donna and Tora, Tora often referenced how her relationship with Donna motivated her to survive: “When mi just know [EFL] … all through di day, Donna call mi fi ask me how mi ah do, when is mi clinic date. Dat is Donna … Donna find di time.” [“When I just know [EFL] … all through the day, Donna called me [to] ask me how I am doing, when is my clinic date. That is Donna. Donna finds the time.”]

The daughter of a single mother, Tora grew up in a low-income neighborhood in Spanish Town. As we spoke, her slim figure rested alongside the concrete barrier near the waterfront in Downtown Kingston. The sky was a clear light blue painted with bright yellow rays. Coconut palm trees lined up along the busy Downtown streets as we looked deep into the blue horizon. Her thick black lashes rested along her deep-set brown eyes as she gazed at the words “N-E-I-L” tattooed on her left index finger. With deep curiosity, I rested my eyes on the ink pasted on her flesh. Noticing my gaze, Tora remarked: “Mi shoulda leave him! Mi want scratch dis off!” [“I should leave him! I want to scratch this off!”] I later learned that “Neil”, was shortened for Daniel who was Tora’s babyfadda, the father of her daughter and her on-and-off partner of four years. Tora’s adolescence, what she described as “carefree,” was shaped by her experiences of rape and forced transactional sex, as well as a tense and distant relationship with her mother. Diagnosed with HIV during the pregnancy of her first child in 2013, Tora described then entering a dark period: “After di docta tell mi mi have a new disease otha dan gonorrhea and was positive, mi did want fi run inna i road and mek one of di bus lick mi.” [After the doctor told me I had a new disease other than gonorrhea and was positive, I wanted to run in the road and make one of the bus hit me.] She immediately disclosed to Neil and her mother, who encouraged her to “jus continue fi tek yuh pills dem” [“just continue to take your pills.”] Since then, she has become a Mentee Mom at EFL. During the time we first met in 2015, she worked a few days each week as a street cleaner—a job of many poor, darker-skinned Jamaicans. Tora is reframing her diagnosis while reconstructing a life in community with other women at EFL as she redevelops her relationship with Neil.

Tora describes care that involves not only encouraging adherence to medical and clinical appointments to reduce the threat of HIV progressing to AIDS and potentially death. It also involves bodily, psychic, and emotional care that often addressed overlapping obstacles of unstable housing, underemployment, food insecurity, sexual violence, and stigma. These bonds often extended beyond the spaces of EFL and were connected to daily care activities such as caring for each other’s children, sending reminders to take ARV medication and to attend medical appointments, accompanying women to clinic visits, sensitizing family members and partners to HIV/AIDS, and even purchasing groceries and clothes. Clearly, care for the community binds women’s care for self and care for each other as they saw their individual well-being and collective interests as closely linked to their community’s access to psychosocial support, medical knowledge and quality health services relevant to their quotidian needs.

EFL actors’ antisexist work and struggles against gender oppression in approaches to the pandemic is reflective of the legacies of Caribbean and Black feminist organizations. The mobilization of activists rooted in explicit and implicit feminist consciousness accompanied by concrete action around basic needs and strategic interests form part of a broader legacy of Black women’s responses to marginalization throughout the diaspora.46 The autonomous collective women created together cemented their commitments to broader communities where they lived and organized. This motivating factor undergirded their commitments to serve as educators and the longevity of the care labor they provided, especially during times when they worked without compensation.47 The intimacy created by EFL actors in their care for the self, care for other women, and care for community evolved a politicized form of self-making and community-building that provides the appropriate circumstances for the development of a radical politics of care from the ground up.

Part 4: Embodied Knowledge: The Political Uses of Illnesses

Star, an HIV-positive 24-year-old woman at the time, approached a panel of international donors in the early morning on November 18, 2015, the 25th National HIV/STI Program’s (NHP) Annual Review and Planning Retreat, which occurred in Montego Bay, Jamaica.48 Following a presentation on the state of adolescence and HIV from Jamaica’s Ministry of Health, Star boldly approached the mic and explained: “This [HIV] issue concerns me as a youth, one that has been raped, and is HIV-positive, and as a teen mother … I think that getting the adolescents involved in policy making and being engaged with the issues because if it is not for us, you won’t know the problems, you won’t know how to solve them, how to go around it …” 

A wave of “mhmms” reverberated throughout the room as Star walked to her seat. Articulating her frustration with the often top-down nature of policy-making that is controlled by donors and the government of Jamaica, her intervention highlights how she mobilizes her intersectional identity as an HIV-positive woman, a youth, a mother, and a survivor of sexual violence in HIV organizing. Star is a Mentor Mother at the Montego Bay location of EFL who emerged as a prominent voice in the local HIV/AIDS community in the last five years. I met her one day during my visit to the Kingston location of EFL. She sat on the couch resting firmly on the peach-colored veranda. The smooth strands of her brown hair were slicked back in a low bun, stressing her glaring eyes and caramel brown skin. She was attentive and open as she introduced herself and her 7-year old daughter, Shay. Shay’s buoyant personality sharply contrasted her mother’s calm demeanor. During our conversation she explained: “I started when I just had her. I was infected with HIV after being abused at age nine. My stepfather raped me. My mother didn’t believe me. She said I was lying. My community blamed me for it and for shaming my stepfather. He died before my mother. He had it [HIV] too. I am not sure if she had it. I still don’t know what killed her.” My eyes widened as she recounted her story in one breath as Shay played in the distance. She continued: “Yeh, mi talk about dis all di time on TV and at conferences round di country … She know bout everything. Mi try nuh hide nuttin from har.” [“Yeah, I talk about this all the time on TV and at conferences around the country. She knows about everything. I try not to hide anything from her.”] Star smiled graciously.

Star’s testimony at the NHP conference made it publicly clear that she, like many of the other women in EFL, have a keen awareness of the exclusions of HIV-positive young women in the national response to HIV/AIDS. As a mother living with HIV and invested in full selfhood, Star embodies the sexual anxieties inscribed in the public health discourse of HIV as a moral panic and threat to the national health. Yet, as an HIV advocate and community organizer of EFL, Star’s transformation journey represents the political possibilities that stem from her use of community health activism to intervene in public conversations that frame HIV-positive women in general, and young mothers in particular, as promiscuous and careless. While the context of her everyday life with HIV has been shaped by her experiences with sexual violence and stigma, it has also been informed by her negotiation of degrees of visibility and invisibility within the spaces of the state, international agencies, and many HIV-related NGOs throughout Jamaica.

Asserting the need to expand current HIV prevention work in order to appropriately address the current landscape of HIV/AIDS, Dr. Nicola Skyers, the leader Jamaica’s National HIV/STI Program at the time, emphasized the need to address the “growing feminization of the epidemic” and to extend the exclusive focus of HIV interventions on traditional “at-risk populations” such as “men who have sex with men” (MSM) and sex workers and toward the inclusion of women, youth, and other groups in the general population.49 Like Star, many participants in EFL emphasized the need to amplify the voices of HIV-positive young women in the national and regional responses.

Star’s comment responded not only to the exclusion of youth and women in general, and young women in particular, but also to the overriding presence of masculinist approaches to HIV prevention and care. Caribbean scholars have noted that this approach derives from the notorious use of the “male marginalization” theory, which often centered the ‘crisis’ of Caribbean men and masculinity to bolster opposition to women’s sexual and reproductive rights.50 Such public debates and policy, as noted by Peggy Antrobus, focused on the “perceived link between the ‘underachievement’ of Caribbean males in the education system and advances in the status of women as a major contributory factor”.51 Extending these critiques of the male marginalization thesis, I use these case studies to insert the thoughts and experiences of Black Caribbean women into these constructions of racialized masculinity and sexuality as I shift attention to power dynamics in crisis narratives. In doing so, I posit that women’s articulation of their embodied experiences of illness and marginalization enables them to simultaneously subvert both gendered inequities and erasures while mobilizing their bodies and voices on a broader scale to claim access to resources within public and private spaces of (mis)recognition.

Embodied knowledge is one of the practical results and political strategies of the interdependent relationships cultivated among HIV-positive Black Caribbean women. I refer to embodied knowledge as the consciousness that emerges as women come to know and understand their bodies and sexualities through the relational and conflicting nature of the interplay of gender, race, colorism, sexuality, and illness in their everyday lives.52 The intimate connections women develop in psychosocial support groups and the spaces of EFL extend to other private and public spaces frequented by high-level decision makers. Women learned about their bodies and reflected on the nature of their involvement in intimate relationships with romantic partners, family members, and children. They also learned how to use their knowledge of sexuality, health, and rights and their women-centered networks to resist the discrimination of some medical professionals who often imposed moral values about sexuality as well as to contest the research of public health practitioners who possessed the authority to support priority areas.

Conclusion

Donna, Tora, and Star attribute their mobilization around HIV with their own differential knowledge as HIV-positive, women, mothers, and as community leaders. It was precisely this knowledge that empowered young Black Jamaican women around concerns beyond mere survival and medication adherence toward both prolonging and improving their quality of life, claiming erotic connections, and using the resources of EFL to combat gender inequality and their lack of political representation. The significance of women-centered networks of Caribbean women is no new discovery. Scholars have long theorized the intimacies that Caribbean women have cultivated and contested.53 For example, Omise’eke Natasha Tinsley notes the significance of imaginative work in telling meaningful stories of black womanhood and sexuality. By foregrounding Barbara Christian’s caution against “the race for theory” in her analysis of non-normative and racialized people in the shipbuilding industry during World War II California, Tinsley offers creative methods and theoretical possibilities for theorizing narratives of Black women’s freedom and erotic life beyond the official discourses that silence the telling of complex stories of gender, desire, and personhood in the African diaspora.54 Given the range of quotidian intimacies, bodies, and self-refashioning among HIV-positive women that exist beyond official documentation, Tinsley’s question remains pertinent for this discussion of Black Caribbean women and the Black AIDS pandemic: “What else can Black women desire besides what the archive documents?”55 The voices and experiences of young Jamaican women reveal that they can desire care, belonging, and solidarity. They uncover how these desires are rooted in the shared experiences of differently situated women who are invested in new kinds of community-building structures and embodied realities that counter the trope of HIV/AIDS containment and black female pathology. These possibilities reveal the ways Caribbean women have connected their illness experiences to both legible and illegible identities as mothers, survivors, sexual subjects and political actors in order to mobilize around the practical needs and strategic interests of themselves and their peers.

In conclusion, I ask: If the always healthy, always productive, and always resistant black subject remains a prioritized figure in Black Studies, then how do marginalized Black Caribbean women living with HIV matter to projects of black sexual politics and black liberation? Black Caribbean women challenge the portrayal of “non-American” subjects as undifferentiated and heteronormative while clarifying the need to identify new subjects and new sites of analyses about race, gender, sexuality and health. In “Punks, Bulldaggers, and Welfare Queens: The Radical Potential of Queer Politics?”, Cathy Cohen’s offers an invitation to think about queer heterosexuals beyond the norms of queer politics that have often served to reinforce simple dichotomies between heterosexual and everything ‘queer’”, subsuming differences of race, class, and gender.56 Young HIV-positive women in Jamaica are queered in relation to the colonial racialized and patriarchal terms which frame Black women as abject sexual subjects in a broader context of deteriorating material realities shaped by global health agencies and public health institutions that condemn their bodies, sexual choices, reproductive capacities, gendered performances and modes of political participation. Thus, women challenge the dichotomy that often exists between heterosexual and queer by using their voices and embodied political practices to intervene in the centrality of specific racialized (lighter-skinned) and classed (middle-class and upper elites) bodies in official discourses and public health campaigns as well as to contest the omnipresence of the (white) gay male body in dominant HIV/AIDS research and movements.57 As they leverage these varied degrees of power, they undermine the coherence of queer and its relationship to a specific sexual identity or behavior because of the fluid connections they make between their sexual desires and practices coupled with their stigmatized embodiment. Their intersectional subject positions render more expansive readings of queerness, black female sexuality, and HIV/AIDS because they signify resistances that originate from and in more shared experiences of racialized sexual and non-sexual marginalization and oppression.

Within this space of tension, possibility, and ambiguity are opportunities to expand our political and scholarly pursuits toward a more radically liberatory black sexual politics, racialized gendered embodiment, and transnational responses to HIV/AIDS. We know far less about young HIV-positive Black women as political actors and sexual subjects than we do about them as medical objects. Through my conversations and interactions with women like Donna, Tora, and Star within and beyond the spaces of EFL, I began to understand how their women-centered networks of care and holistic health within constricted social and institutional spaces provide a foundation for new expressions of black erotic life and social intimacies. Given the scant literature on the pandemic among Black women in general, and Caribbean women in particular, and the lack of knowledge of their cultural work and intimate lives, this ethnographic study of young HIV-positive Black Jamaican women in Kingston provides an appropriate basis from which to forge dialogues across (inter)disciplines, geographic locations, and cultural contexts as well as among activists, practitioners, and researchers. It is in these spaces that we can reimagine what it means to live anew, to relate to each other, and to organize across borders.

Disclosure statement

There has been no financial interest or benefit that has risen from the direct applications of my research.

Funding

This work was supported by the Fulbright U.S. Student Research Grant and the University of Michigan’s Rackham International Research Grant, International Institute, and the Departments of American Culture, Women’s Studies, and Afroamerican and African Studies.