Why are you here? is a question that a comrade living with HIV asked when I first approached her many years ago to collaborate on work among women living with HIV. In varied forms (e.g., why are you interested?) she has asked this question over the years to candidates applying to work with our team, including research coordinators, graduate students, and postdoctoral fellows. In some instances, she has explicitly stated that if you are here simply aiming to build your resumé, get a degree, or advance your career, there is no need to continue. For her, their potential contribution to the work is limited if advocating for, uplifting, and improving the daily lives of people living with HIV is not their core reason. I agree, and strongly believe that all HIV researchers should be scholar-activists.
Scholar-activist combines two terms to describe academics who simultaneously engage in scholarship (academic study or achievement) and activism to promote social justice and improve lives. Addressing the HIV epidemic demands an approach rooted in social justice and intersectionality given that HIV inequities are driven by interlocking systems of oppression inclusive of racism, heterosexism, cisgenderism, sexism, ethnocentrism, poverty, and more. Everyone in the field, especially researchers with privilege and access to resources, ought to ensure that their research questions, process, findings, and dissemination help to improve the lives of PLWH and challenge the drivers of inequities.
Problems with current trends
Scholars enter HIV research for various reasons. Some enter because of a genuine desire to make a difference in the lives of people impacted, create a personal narrative, and/or establish a proximity to people living with HIV (PLWH) and communities most impacted. Others enter because they find it interesting, and it is, or was, an area of work being conducted by a mentor. Their entry points can be problematic if young scholars are nurtured to merely approach HIV research from the angle of what is “interesting” to them. PLWH and the impact of HIV should not be reduced to a thesis or dissertation question that will not have a positive impact on the lives of PLWH. Further, research questions should never be arrived at in a vacuum and without being informed by PLWH. As harmful as this is, some scholars enter the HIV field because of perceived opportunities to launch their careers and secure grants by reiterating the HIV inequities affecting minoritized communities. The extent of their work may involve minimal contact with PLWH beyond the intellectualization of factors and issues impacting the lives of PLWH. In 2021, Dr. Elle Lett coined the term “health equity tourists” to describe the phenomenon of scholars who lack adequate knowledge and commitment to advancing health equity, jumping onto the bandwagon of applying for equity-focused grants and negatively affecting funding and publishing opportunities from minoritized scholars with the necessary expertise in health equity research. The term immediately resonated with me because of the parallel behaviors I have witnessed HIV scholars engage in.
The reason why a scholar initially entered HIV research does not need to remain the same throughout the decades of their involvement, but I have witnessed that many HIV researchers have settled into the narrative of HIV research being what they do for their career, be it via research projects, publications, presentations, or leadership roles. This is wrong and harmful as it relegates PLWH to individuals to study and use for career gains, rather than a community fighting for the full range of their humanity in the context of stigma, who we as scholars should fight alongside.
Becoming or improving as an HIV scholar-activist
It is important to clarify that scholar-activism is not limited to HIV social and behavioral researchers whose content focus may include the study of social factors. Everyone who benefits from HIV research funding has an obligation to utilize their scholarship in advocating for the well-being of PLWH. Whether you are a basic researcher examining factors relating to HIV at the cellular level or a neuroscientist examining the impact of HIV on the brain, you can and should be a scholar-activist. There are HIV researchers who are and have been scholar-activists throughout the decades, but they remain an exception and instead should be the norm. There are no constraints on how to be an HIV researcher and a scholar-activist, but below are several questions for HIV researchers to reflect on and make concrete changes.
- Are you partnering with PLWH and community-based organizations to arrive at research questions, determine how the research will be carried out, and decide on how to best disseminate findings beyond academic spaces?
- If you are partnering with PLWH and community-based organizations, is an equitable proportion of your research budget going to community partners and PLWH?
- On your research team, how many members are PLWH or members of communities placed most at risk for HIV? What are their roles on your team, and is there a pathway to advancement? If they are only delegated to recruitment roles (while being essential), without opportunities for training and advancement, that is problematic.
- In the face of institutional hiring policies (e.g., rejection based on incarceration and substance use histories, credit checks) that often penalize PLWH for the very consequences of the oppression (e.g., racism, heterosexism) they face, what are you doing to advocate with human resources to ensure the hiring of PLWH?
- When you recruit and interview trainees to mentor, does your selection process value lived expertise and the candidates’ long-term commitment to positively impact the lives of PLWH or those placed most at risk?
- In mentoring PLWH and people placed at risk, do you view them as an extension of your work, or are you mentoring them to chart their own journey and one day replace you as they become established investigators equipped with both the lived and academic expertise needed to end the HIV epidemic?
- How often do you engage with PLWH and people placed at risk outside of academic institutions? Is this equivalent to how much time you spend giving talks about PLWH to other academics?
- When you are invited to give talks, sit on panels, or be interviewed, do you insist that the organizers meaningfully include PLWH, and offer payment?
- If you occupy leadership roles in centers for HIV research, do you utilize your voice to ensure that adequate monetary resources are directed to community engagement efforts? In addition, what are the roles occupied by PLWH, and are their voices impacting the allocation of resources? If PLWH are primarily on a community advisory board that is treated passively without their insights driving leadership decisions, this is not meaningful engagement.
- How responsive are you to community advocates when they ask for support that is not linked to one of your research aims or outcomes?
- Are you lending your voice to advocate against policies, laws, and practices entrenched in racism, heterosexism, cisgenderism, and ethnocentrism impacting the lives of PLWH and those placed most at risk?
Also see Research on Transgender People
Sannisha K. Dale, PhD, EdM, (she, her) is an assistant professor of psychology at the University of Miami and a licensed clinical psychologist specializing in conducting research on the intersection of mental and physical health and developing interventions.