Engaging in Intersectional Liberation for Every(Black)Body Impacted by Anti-Blackness and HIV-Related Stigma

BLACK COMMUNITIES AND HIV

Despite the availability of effective medications for HIV treatment and prevention, Black people continue to experience a disproportionate burden of the disease. In 2019, more than 40% of people living with HIV in the United States were Black, and they had lower rates of viral suppression than members of other racial and ethnic communities.¹ This epidemiological pattern has persisted since the beginning of the HIV epidemic.² Recent literature indicates that the same underlying socioeconomic structural issues that give rise to negative health outcomes among Black people also impact how HIV is both experienced and addressed within Black communities.^3,4

Underlying these health outcomes is the pervasive impact of anti-Black racism, which is prejudice, attitudes, beliefs, stereotyping, or discrimination that explicitly or implicitly reflects the view that people of African descent are inferior to those in other racial groups. Anti-Black racism prohibits Blackness from being valued and systematically marginalizes people perceived to be of African descent. Simultaneously, Black people hold intersectional, socially stratified identities based on ethnicity, nationality, sexuality, gender, and other characteristics. Interlocking systems of oppression which target overlapping identities (e.g., Black, gay, immigrant) compound the experience of oppression, amplifying vulnerability to HIV for specific Black communities.

Intersectional HIV sigma is the manifestation of oppressive policies and practices within systems that result in prejudice and discrimination directed at people living with HIV or people perceived to be at greater risk of HIV acquisition. Stigma enacts a psychological toll and directly impacts health-seeking behaviors of people living with HIV and others from marginalized populations, such as lesbian, gay, bisexual, transgender, queer or questioning, intersex, and asexual (LGBTQIA+) communities; people who use drugs; sex workers; and immigrants. HIV-related stigma can be interpersonal, institutional, or internalized and occurs in personal, work, and health care settings. Addressing intersectional HIV stigma and its impact on Black communities is complex, given the paramount challenges posed by anti-Black racism, nativism, heterosexism, and other systems of oppression. It requires an intentional approach that centers the voices and leadership of Black people.

BLACK LEADERSHIP AND HIV

Black HIV activism has been a pillar of the HIV response from the beginning of the epidemic.^5,6 Although this rich history has often gone unrecognized, it has contributed to important gains in HIV policy, resource allocation, and community mobilization for Black people overall, as well as other impacted communities. However, Black communities have not mounted a fully successful response to HIV. This is due in part to the perception of HIV as a “cross-cutting issue.” As described by Cohen, “cross-cutting” issues are those that primarily impact the most marginal groups within an already marginalized group.⁶ This “secondary marginalization” occurs when a majority within a stigmatized group does not view some of its members as worthy of the collective’s resources.

People most impacted by HIV in Black communities experience marginalization at the intersection of multiple social categories. These include sexual orientation (e.g., gay and bisexual men), gender identity (e.g., transgender people), substance use (e.g., people who inject drugs), occupation (e.g., sex workers), or immigration status (e.g., undocumented people). Black people who hold these identities are devalued not only by others in the Black community but also in society at large on the basis of their identities being seen as immoral or their societal roles viewed as inferior.^5,7 This sentiment showed up in various ways earlier in the epidemic, including mainstream Black institutions’ unwillingness to acknowledge HIV as a problem that needed to be addressed nationally. Consequently, the Black community’s response to HIV has often been less robust than would be expected if HIV severely affected Black community members who are held in higher social regard based on class, sexuality, citizenship, or gender. In addition to internal dynamics, external factors fueled by anti-Black racism block Black people from gaining the position, power, and resources needed to lead response efforts. This includes insufficient funding to Black-led HIV organizations, limited social capital wielded by Black leaders, and inadequate as well as often stigmatizing media focused on the HIV epidemic in Black communities.

THE BEGINNING OF UNITED WE RISE

In the summer of 2019, three Black-led HIV organizations envisioned a national convening to address the inadequate response to the HIV crisis in Black communities. They assembled a 35-member planning committee. Members were intentionally selected, representing community and academic stakeholders, geographic and demographic diversity, and a range of knowledge and skills.

Three in-person planning meetings were organized to cultivate space for critical thinking about internal and external barriers and reflecting on individual and collective experiences. During these meetings, participatory exercises resulted in significant changes to the direction of the work. As originally envisioned, 300 Black individuals from diverse disciplines would attend a three-day conference with traditional plenaries and breakout sessions. The goal was to develop policy recommendations that could be shared with decision-makers at various levels of government and public health organizations. This original concept evolved into the creation of a collective of Black people living with HIV, activists, researchers, and health providers, all of whom focused on the question, “What would the response to HIV look like if it were led by Black people?” Work groups were established to implement key operations and planning activities, such as a communications strategy and ongoing community engagement. The committee named the initiative United We Rise (UWR), aiming to break oppressive cycles and develop strategies that attend to the structural conditions underlying inequities in HIV and other health conditions in US Black communities. The participatory exercises were the genesis of a commitment to centering Blackness, liberation, and intersectionality—ultimately generating our mantra: Every(Black)Body.

Every(Black)Body embodies collective liberation from systems that do not value Black people and the internal struggles that result from this devaluation. Addressing HIV within Black communities is seen as both an internal and an external process requiring Every(Black)Body to be heard and engaged. It demands that we honor the history and diversity of the Black diaspora and value the range of unique, intersectional lived experiences of Black people. Blackness is defined as honoring our beginning as people of African descent, understanding our shared history with oppressive colonial systems and their generational impact, uplifting commonalities and practices across Black cultures, and thriving in one’s Black skin. Across the diaspora, Blackness is both a communal and an individual experience. The concept of intersectionality recognizes the dynamic interplay between multiple social identities that Black people hold, their positionality within social hierarchies, and the myriad social issues that are linked to HIV. UWR’s approach to applying intersectionality to the HIV response is closer to its Black feminist roots than what is often found in public health research.⁸

In “Theory as Liberatory Practice,” bell hooks acknowledged,

When our lived experience of theorizing is fundamentally linked to processes of self-recovery, of collective liberation, no gap exists between theory and practice. Indeed, what such experience makes more evident is the bond between the two—that ultimately reciprocal process wherein one enables the other.⁹

Planning committee members engaged in more relational, reflective exercises during planning meetings, allowing for a departure from traditional processes and accepted narratives about ending the HIV epidemic. This created space for elevating liberation as a core concept and practice. Both the arc of the planning process and the intended outcomes for the initiative were redirected from their original intent. Emphasis was placed on promoting dialogue within the Black community to name and address the sometimes-harmful realities of our relationships with each other and the necessity of using an intersectional lens to define needed action.

After establishing the principles that shape our collective vision, the planning committee was deliberate in seeking direction from a broad cross-section of Black community members in the United States. UWR developed a Web-based survey using an adapted Delphi process and disseminated it nationally.¹⁰ This led to the development of five focus areas deemed fundamental to advancing Black liberation in the context of forging an effective response to HIV in the US Black diaspora (Table 1).

TABLE 1—

United We Rise’s (UWR’s) Five Focus Areas

Focus Area	Description	Guiding Question
Black community engagement	UWR values Black spaces for gathering and strategizing. The freedom to choose is central to inclusive practices for engagement. Our work mobilizes diverse Black communities to engage meaningfully in HIV and broader justice work related to alleviating the harm HIV does to Black communities.	What strategies are needed to better organize and engage Black communities in transformational change?
Intersectionality	UWR values our interconnectedness and honors our differences, including the unique ways HIV impacts specific populations within Black communities. Voicing the harms we can cause one another moves us to empathy, healing, and collective liberation. Our work deepens intersectional solidarity across Black subcommunities and across justice movements.	How can we build internal solidarity across identities and priorities to advance HIV work within Black communities?
Black leadership and organizations	UWR works to uphold Black principled leadership within our organizations and communities that embodies and affirms liberatory values and practices. This demands transparency and holding Black organizations and leadership accountable.	What are the values and principles that should underlie the practice of leadership in the HIV movement and in our community organizations, including organizations indigenous to Black communities?
Policy	UWR works to democratize power and amplify policy approaches that destigmatize and decriminalize Black bodies. Centering the knowledge, experiences, and voices of the people closest to the problems will lead to flexible and expansive policymaking that produces intersectional solutions.	What are the federal, state, and local policy changes that, if enacted, would have a transformative impact on Black health and liberation?
Sexuality and gender identity	UWR values sex positivity and sexual expression as forms of liberation. To love our bodies and affirm our freedom from sexism, misogynoir, and male‐centeredness is central to liberation from traditional expectations of gender, relationship structures, sexuality, and sexual roles.	How can Black communities move toward embracing diverse expressions of gender and sexuality as a part of ending the HIV epidemic?

In December 2020, UWR held a 3-day virtual convening to build internal solidarity across identities and energize HIV community mobilization in a manner that intersects with broader justice efforts. The five focus areas guided the content for the convening. Two hundred twenty-five individuals participated in “couch conversations” (informal discussions with researchers, health providers, activists, and policymakers) and “kitchen conversations” (intimate dialogues about who we are, our values, and ways our communities have intentionally or unintentionally harmed each other). Each day included small-group working sessions engaging participants to identify values essential to intersectional solidarity, values needed for Black-principled leadership, and action areas to ensure that the Black response to HIV is intersectional. Outcomes provided structure to UWR’s ongoing mobilization efforts and work within the five focus areas.¹¹

LESSONS LEARNED

Willingness to “do something different” brought inherent challenges for UWR leadership and overall planning and implementation. Selecting a diverse planning committee required conveners to bridge disagreements on inclusion criteria and expand the pool of potential attendees beyond conveners’ social and professional networks. Leadership struggled with the tension between having an innovative process and defaulting to traditional planning and community engagement practices. Generally, committing to a participatory planning process requires time and resources. Because of the COVID-19 pandemic, the planning phase became longer, which led to some participation fatigue and frustration. Staff time, capacity for effective facilitation, and funding were needed to support ongoing engagement. Some challenges were overcome by shifting the responsibility for the direction of the project to the planning committee and creating space for an organic process dependent on what developed over time. Committee members co-led work groups, cofacilitated full planning meetings, served as influencers, and coproduced social media live shows.¹² An unmet goal was adequately building connections to other social movements, such as criminal justice, immigrant rights, reproductive justice, and drug decriminalization, and engaging them with UWR. However, this is a priority for UWR’s future growth to ensure that the HIV response is intersectional and improves the overall wellness of Black communities.

CONCLUSION

Ending the HIV epidemic in the United States requires identifying and dismantling anti-Black racism and the ways Black people are marginalized by intersecting systems of oppression. The work of UWR builds on a tradition in the Black community of intersectional organizing, including HIV efforts in the 1990s. The HIV response during this era was mostly grassroots-led. As the HIV response has become more professionalized and biomedically focused, resource allocation to community-led HIV strategies has declined. A substantial shift in the direction of the HIV response in the United States is needed, requiring bold new leadership and innovative, nonhierarchical strategies that reimagine collaboration, decision-making, and resource allocation. As a Black-led, intersectional approach rooted in a liberatory praxis, UWR offers a vision for firmly centering the needs of Black communities most impacted by HIV. With sustained energy from Black communities, investment in Black visions to end HIV and other health inequities, longer-term resourcing of Black-led agencies, and strong collaboration between Black and allied organizations, there can be transformative progress in the fight to end HIV for Every(Black)Body and other impacted communities.