‘Remembering and Committing’ to Representation in Advocacy Leadership for World AIDS Day
This year, World AIDS Day celebrates its 35th anniversary under the banner of “Remember and Commit”. As someone who was born in the mid 1980s, I do not have the experience of remembering a world before HIV, though I did have the privilege of being deeply influenced by fierce HIV activists and People Living With HIV (PLWH) from the time I was very young. My first memories of HIV involve my beloved Auntie Michelle, who was an HIV program monitor from the late 80s through the 2010s. In crumbling pastels, she covered her entire driveway in sidewalk chalk to help explain her work and how systems of HIV care interacted on local and national levels. My eleven-year-old brain was fascinated as she illustrated how the strongest programs placed people who had lived experience at the center of leadership and program development… and also what happened when the voices of those people were ignored.
I don’t have memories of what the world was like before HIV, but I remember my Auntie and her best gay friends (who were the first gay adults I had ever met) walking my pre-teen self down Belmont Avenue in Chicago, sharing memories of where they had partied before the parties became eclipsed by the HIV epidemic. Nestled among those very venues, they also made a point to show me one of the first youth drop-in centers to offer HIV testing, counselling, and support groups in Chicago. They shared about how they had been involved in evolving similar programs to expand access to HIV care in hospitals and neighborhood health clinics throughout Cook County – always championing the ways that PLWH were steering the vision of what those services should look like.
As a young “sick kid” who was already too familiar with the power dynamics of not being heard in medical settings, I remember being in awe that impacted people could ever have power over how their healthcare was delivered, let alone be in positions of leadership to direct how it could be done. In being generous with their memories of a world before HIV, and of what they had helped to build after it, they fostered my sense of legacy in advocacy, and helped shape my dreams of what we might have the power to collectively build in the future.
With this kind of role-modeling, it is perhaps unsurprising that I would find myself both enamored and enraged in the world of healthcare advocacy and policy development as an adult. While it still feels like the field of HIV is more intentional than others in incorporating people with lived experience into leadership roles, there is still plenty of room to more meaningfully center PLWH in our advocacy movements and beyond. And one area we still frequently lag in is ensuring our representation and leadership evolves with the epidemic. Far too many boards and chief executives reflect a heavy white, cis, male experience. Far too often, if leadership has any reflection of diversity among PLWH, it’s very tokenizing. This is especially true for women and trans people.
On a smaller scale, it is now broadly expected (and sometimes legally required) for clinics and programs to house community advisory boards to help guide their practices. Unfortunately, it is less common for those boards to be adequately representative of the communities they serve, and even less common for those boards to have meaningful power in decision making or policy setting within their spheres. What does accountability look like in our collective commitment to centering the voices of PLWH in our advocacy movements? In my experience, it is much easier for people who are not living with HIV to wax poetic about what that can look like, while refusing to cede, shift, or share power in meaningful ways.
From conversations with loved ones, colleagues, and elders who were engaged in early HIV activism, I am reminded that the PLWH at the forefront of the movement were not there because they had been “allowed” to be by people who were not living with HIV, but because they demanded that their voices be heard in all of the spaces in which their lives were discussed. The urgency that motivated their call to action may not look the same now as it did 35 years ago, but the commitment that they demanded from those in power remains the same.
On this World AIDS Day, may we all remember the voices, lives, and sacrifices that PLWH the world over have made to ensure that their voices are the ones propelling our movement. May we remember our commitment to not only hire, but to invest in PLWH and communities highly affected by HIV. May this stream of memory renew our commitments to empowering both new and seasoned leaders who are living with HIV to build a world where everyone can thrive, regardless of their status - and may we remember our individual power to advocate in our own back yards and reflect on how we can hold ourselves accountable to that charge as we move forward in this epidemic together.