Jen’s Half Cents: Digging Deep on Leadership Equity in HIV

Much focus is given to the “noise” leadership from advocacy organizations have to offer. Public statements are signed by folks with titles like Chief Communications Officer or Executive Director. Media interviews focus on selecting personalities based on their organizational role. This isn’t necessarily a bad thing. It’s a chance to set public narratives and share personal backgrounds in a storytelling fashion…it’s how we humanize what often feels like a faceless discussion. That humanization is critically necessary for effective advocacy. Patients, people living with HIV, are not blots of ink on paper or some series of numbers assigned in a budget. We’re more than the “black and white” of a grant application. We are certainly more than our titles or our jobs. We are whole persons with a plethora of experiences and aspirations and families and communities that depend on us in all variety of ways.

There’s a quality of those ongoing discussions of public health that’s enriched and made more effective, more tangible when those speaking to the issues also live those issues. The discussion itself, at least with regard to HIV, centers on issues of equity across the lives of those most affected – economic equity, health, education, and so on. The quality of that discussion is so sufficiently elevated that we built community principles which are meant to guide our engagement; Meaningful Involvement of People with AIDS (MIPA), the Denver Principles, and so on. Hell, the statutory requirements of the Ryan White CARE Act includes these ideas in requiring recipient jurisdictions to have planning and advisory councils.

So must our organizational leadership reflect these ethical directives in exactly who sits in those seats and their experiences in getting there.

As we begin to see some, though not enough, generational shift in HIV leadership, how we get there is going to matter as to our sustainability.

For those not “in the know”, an unsurprising fact of this generational shift is the “new” leaders talk to one another about how we’re navigating those changes. For me, it was the absence of a mentor in Bill Arnold’s death. For others, it might look like fighting an institution’s inclination to rely upon previous leadership to undermine decisions of the current or incoming leadership, for others still, it might look like founders prioritizing legacy contacts over that of newer blood. We need places to vent but also to share strategic alignment, which might look different than things have in the past.

We are, after all, each other’s peers in every professional respect.

In discussing with a colleague their experiences with how these shifts feel very reminiscent of the very problems we’re being tasked to address by our mere presence, they shared the following, “The intersections of founder’s syndrome and white supremacy are profound and real and exhausting. For all the emphasis we put on new Black queer leadership, let’s also hold the old leaders accountable for not letting go.”

My colleague… my friend asked of anonymity if I were to include this quote anywhere. I’m endlessly grateful I have earned their trust and will work to continue to earn their trust.

And we really do need to do more than sit with this idea if we’re to not beat down the fabulous innovation and talent that awaits us. The time for “sitting” and reflecting on how our leadership might be more reflective of the epidemic, how we might address “subtle” (it’s not subtle, ya’ll) slights and “cultural competency trainings” aren’t going to do it.

HIV diagnoses have not meaningfully declined in the last decade in the United States, except for white, gay, bisexual, and same-gender loving men. Our overall leadership, the slow pace of generational change, and the barriers to meaningful leadership change are all part of the reasons for that.

We will not make meaningful progress by doing the same things, with the same people, over and over and over again. We will not break chains of racism or misogyny or stigma or ableism or any other bigotry by requiring a new generation to perform in the environment in which those…less than palatable ideas flourished to begin with.

HIV not only needs to consider the necessity to expedite leadership changes but how we get there.

How do we ensure we’re not burning out bright stars before they even start? How are we actively planning for success in succession? How is old leadership, including board members, releasing its idea of how thing “should” be, going beyond “allowing” new leadership to guide, and moving forward with enthusiastic support for a different vision of how to get to the same goal?

“How” matters as much as “who” or “when”.

We need to dig deep to ensure the equity we seek in the world around us is also reflected in the leadership guiding us and the experiences of those coming into leadership.