Challenging Existing Power Structures
Terri Wilder: Congratulations on your new co-executive director position. It feels like a number of nonprofits are moving to co-executive director models. What made PWN move to this model of leadership?
Venita Ray: It was a number of things. I think it was a natural evolution for us because, in some ways, we were already informally doing this in the last year or so. Then there’s the evolution of PWN from 2008 to now, where it’s been around but it was really programmatic, with not a lot of infrastructure. It had an ED who was doing kind of it all, and we didn’t even have admin staff.
It’s evolved to an 11-person staff. A couple of years ago—probably 2018, when I was on the board of directors—the board approved the hiring of a deputy director. I was sitting there, not thinking it would ever be me. But in 2018, I ended up being the first deputy director to begin to provide the infrastructure to a growing organization. Over this almost three years of work with Naina, it has been an evolution in the way that we have worked. Probably in the last year, it’s become more formal that we’ve been co-leading. Last year we began to think about: What does the future of PWN look like? How do we better reflect our constituent base? We were in the middle of an uprising, where race became huge—although we’ve always focused on racial justice, gender justice, and those things before—and began to have these conversations, and they weren’t all comfortable. One of our values is dismantling white supremacy—and really looking at how we’re living our values.
The more Naina and I talked, she presented this idea of a co-directorship, and it really just felt right. You know, how do we create more than one path to leadership? How do we get rid of the idea that one person has to lead? How do we think about the future of the organization? How do we think about race, even in who leads, and what does that mean?
So, we pulled a change team together and worked with a consultant and with some of the founders who are Black and some of the board members to explore this. They, at the end of it, with even pros, cons, and challenges, supported the transition.
It has just felt right. It formalized something we were doing informally. And it supports better work/life balance. It just kind of happened for Naina and I, even though we were intentional about this and wanted to explore with our members in that change team—and they all agreed.
Wilder: The announcement on the move to a co-executive director model stated, “We recognize that a shared leadership model by a Black woman and a non-Black woman of color is not the norm in HIV spaces—in fact, it may be seen as an affront to typical hierarchical structures in our field, which is often dominated by solo white or non-Black leadership.”
That is such an important statement to put out into the world and the community. I wonder if PWN putting the statement out and taking this leadership is going to force other organizations to look at their leadership and reevaluate who should be part of it.
Ray: The way that we want to show up in spaces is, we are challenging, in our work, existing power structure. One of the fundamental issues around race is who holds power. You can’t achieve real racial justice without looking at that. There’s just no way to do that. Typically, the HIV movement has been largely seeing white, maybe cis males, and some women, in leadership. And it still is the case. We began to see that change with the Black AIDS Institute, Southern AIDS Coalition, and some others—but that’s not the norm.
Within the epidemic of women, 60% are Black women. We know that the epidemic primarily is centered around Black and Brown communities. But yet, the leadership in the HIV movement spaces is not.
Is there a correlation between who holds power and making decisions around HIV and that we are still 40 years into this epidemic and we’re not using the racial justice lens in the response? And, thinking about how things are funded, how decisions are made, and who gets to make them, and who’s at the table.
I hope that others will think about that, as well. We’ve had some response that people are thinking about that. But we hope that happens. We want to be intentional in making sure that our house is doing what it should be doing and doing our best. And it’s not easy, but there would be a definite benefit if folks began to think about that.
Wilder: You’re a lawyer by training. Does your training impact or influence your day-to-day work at PWN?
Ray: I definitely think it does. Even before I was diagnosed and when I worked for the district government in the Office of the Attorney General for the District of Columbia, I’ve always had a community lens on my work. The law is one thing, but my love of community is another. And it always required a balancing approach of the way that I worked in communities to not just say, “This is law, and this is not,” you know? I’ve always thought about how to show communities how to still have their voice heard, even within the confines of a bureaucracy or a power structure.
But the analytical kind of way of looking at things and the kind of way that I might formulate a response or something, since we do so much policy work, it is definitely a benefit. And in the way that I work with community on lifting folks up about advocacy, since so much of our work is around advocacy. I truly, truly believe, even as a lawyer, that it’s my job to help you—not to just do it for you, but to understand what’s happening interpreted to where you might go and share that with someone else.
Law, to me, is never meant to be this mystical thing, that only we can understand. The positive interaction with a client is where I’ve left you in a way that you have understood it and can participate in what I did, but also be able to go tell somebody else who’s done a lot of community work about it.
And so, I do think it has a benefit in PWN, with the approach and the kind of thinking that I bring. But I have to tell you, in the HIV movement and with folks like Naina, they were forced to understand the law and what folks did in the early days of the epidemic, by educating themselves about HIV and being able to influence the FDA [U.S. Food and Drug Administration]. In the beginning, no one else was doing it. And even now, we have to understand what policymakers are doing. I can go to someone who’s not a lawyer in the movement, and they’ll understand it way more than you may think.
But I do think it adds to what I do. It brings a perspective, that I think of things in a certain way, but I have to temper that from a social-justice standpoint, and ask, how do we then have community-driven, community-led work? So that as much as possible I am here to empower communities, not empower as a lawyer.
A Collective Voice for People Living With HIV
Wilder: PWN is known for their fierce activism. Can you talk about the work that’s being done around facilitating convos among the persons living with HIV networks and key HIV leaders living with HIV to address the lack of meaningful engagement in the federal HIV response?
Ray: One of the benefits in PWN and Naina’s leadership is that we do have some staff and a little bit of infrastructure. We’ve been able, over the years, to be involved with the creation of other iterations of groups in this work. And we are a network of women and people of trans experience living with HIV.
We were involved in the creation of something called the U.S. People Living With HIV Caucus, which is a network of networks in the U.S. There are other networks: the National Working Positive Coalition and other groups that are key leaders of people living with HIV.
Late last year, we held the new strategic clinic. We had done it before I was even with PWN. It’s kind of the convener of a network. The caucus was created to kind of do that role, but it had no staff. And so, when the new HIV National Strategic Plan and a request for comments came out, it was done really quickly—and comments had to be in before the inauguration. PWN put out a notice and facilitated with the folks who are part of networks or in key leadership roles to say collectively—and this was economic justice, this was women consulting, some of our trans advocates, and Black advocates that are part of these networks—we wanted to respond and provide public comments to the new strategic plan. We did it as a collective and pulled together.
But PWN had the ability to have a staff to support that collaboration. There were some things discussed that we had noticed; for example, there was a lack of that collective voice which we, as a caucus and in other ways, wanted to bring to folks who are individually trying to reach out to the new Biden-Harris administration about their need to know different task force facts. Even though we did make public comments as a group and pulled that together, and PWN had the staff to do that, questions came up about how to elevate those issues. We can all be seeking to have talks with the new administration. We just weren’t sure.
There’s an email that allows you to request meetings, and we’ve done that. But how do we elevate that voice? Whether it’s on PACHA [Presidential Advisory Council on HIV/AIDS] and having dedicated seats, or on dedicated chat groups for the advisory group for the CDC [Centers for Disease Control and Prevention] and HRSA [Health Resources and Services Administration], we wanted to see where we could help the federal government operationalize meaningful involvement, by having us in this administration (because we didn’t always see that in the last one).
Because we have staff, we’ve been convening—and we’ve probably been having conversations now in the last couple months—every two weeks, where we have the staff to be able to help with that. We decided to hold a public event on Facebook Live later this month where we can hear from all around about sexual and reproductive health, which the new strategic plan does not really address. It talks about stigma, but there are no metrics. It doesn’t really talk about racial justice, economic justice, and then coordinate for people living with HIV who are vulnerable to it. We’ve seen with the Ending the [HIV] Epidemic response, and then with the four pillars, that it talks about treatment but doesn’t mention any of those other quality-of-life issues for people living with HIV, and meaningful involvement. We saw a gap, and we want to step up as a collective to bring the voice of people living with HIV to the new administration and to the federal response in EHE and that other work.
PWN, because it has some staff, is able to facilitate and has the ability to send out the notices and take notes to make that happen. But those folks have come to the table and definitely, they are already doing the work individually. But how do we uplift that collectively?
Wilder: What has been PWN’s relationship with the Biden-Harris administration thus far? Have you been able to have any meetings or make any inroads in getting to know folks in the new administration?
Ray: Not as of yet. There have been a lot of different conversations, and so at different tables we sit at, we’ve been able to meet with one campaign at the time.
Representatives might have come there with the AIDS United Public Policy Council, ACT NOW: END AIDS, SAP, or other places. There have been maybe a couple of those since the election, and we’ve been able to engage with the federal EHE program at other tables.
We have seen what the administration has put out—a kind of link that you can request a meeting. So we’ve done that collectively with these other groups and other tables, and then PWN has made some individual requests for meetings on its own. We have not had those meetings, but we’ve been a part of the different statements of issues that these other tables have elevated. And we’ve been a part of the statements we’ve done as a collective. We work every table that we sit at, in terms of making those requests via those tables, as well as our own. As an organization representing women living with HIV, we have a unique role to play, individually, but then also as a collective.
Filling a Mobilization Gap in the South
Wilder: I understand that PWN has another advocacy effort focusing on the South. Can you talk about the Southern Women Advocacy Response Mobilization (SWARM)?
Ray: So let me take a step back. SWARM was originally created probably in 2014 by [HIV/AIDS activist] Waheedah Shabazz-El as a way to bring women in the South together to talk about issues and strategize together. It lasted for a little while, but it was never really institutionalized.
Then last year, with the “get out the vote” effort, we were able to use it as a peer-sharing model. It met monthly to talk about the get out the vote efforts that were happening in Texas, Alabama, North Carolina, South Carolina, Florida, and in other Southern states. Then we’ve used that same model now to formalize. We launched in February using SWARM to host a standing monthly think tank, engage, teach, and mobilize space for both positive and negative folks in the South to come together and just talk. This happened because we saw a gap. There are other kinds of spaces in the South that meet, but not a regular standing one that both positive and negative folks can come to. And so with SWARM, we wanted to see if we could create something that would harness the work being done by allies in bringing them to the space to share, and having speakers or trainings, or just elevation of issues, as well as our women being exposed to those folks and learning about new issues that they can be involved in, or whatever mobilization might come out of there. So it’s a new space. We saw a gap in the South and wanted to fill that.
But in addition to that, in 2019, we also created something called the Texas Strike Force, where some of our work we’re wanting to do is not just at the federal level, it’s at the state level, and state legislative advocacy. With the Strike Force, we implemented it as a model of what state-level advocacy could be. The Strike Force is a mobilization arm, of trying to get folks involved in the state legislative session.
We formed what is called a rapid response team, a component of that, that would be monitoring certain bills that were relevant to folks around reproductive justice, HIV, election and voting, and immigrants, and be able to get that information to folks and support folks’ engagement in the state legislative session.
And so, in 2019, we did that and were part of organizing a Texas HIV Advocacy Day. Texas [legislature] meets every two years. We reenergized and started to kick it off again for this legislative session. We ended up jumping into an ADAP [AIDS Drug Assistance Program] issue. Our Texas health department made some changes at the end of last year, where people didn’t know about it. There were changes to eligibility that resulted in the elimination of 2,700 Texans living with HIV from medication.
The Strike Force was a good mobilization effort that we’ve been able to increase public awareness of, and it resulted in the state health department going back on their decision, because we had a town hall with them. There have been articles written about it. They’ve changed their decision, but we’re still working with them to see how we can make sure this happens better. And then we’re following certain bills around voter suppression. One bill that is being heard soon would have HIV criminalization impact: HB 369.
A lot of our members are in the South. We know that’s the epicenter of the epidemic. They are primarily Black. How do we create model spaces of engagement, mobilization, and learning in the South that invite new positive and negative folks to SWARM? Then the Texas Strike Force—even though it’s run by women living with HIV, it involves anyone who wants to join. So, those are just two separate but connected efforts to mobilize in the South.
Wilder: You always have a lot of exciting work going on. What are your hopes and dreams for PWN as you look towards the future?
Ray: That’s a big question. You know, clearly, that we continue building internally in a way that reflects our membership, and that we continue to do and build and be more responsive and engaging to our members. We want to continue to build leaders. We want to continue to support existing leaders. There are folks out there that still need more than what we’ve been able to give them.
We want to really have and reach into more spaces within the country that our members are really throwing down in and be more engaged with decision-makers. We wish that PWN didn’t need to exist, but our mission is that women living with HIV are thriving and involved in those decision-makings. So, the fact that we can’t be cured of HIV—that’s what we want to achieve. If that’s at the federal policy level, how do we really demystify engagement and get our federal government to be more responsive?
It’s not just about who’s in the White House, but what is that whole structure doing? How do we influence the HIV movement spaces that make it more open for our trans folks to really show up there, or our other members, and really maybe have some impact about Black leadership, non-Black POC leadership, or really change the balance of power in how decisions are made, and how funding is done?
Utopia would mean to me that we’re trying to engage and mobilize our members and our base as they are being traumatized. And how can we be able to engage people where they’re not having to fend off blows every day? We know that a lot of our members are below the poverty level. How do we bring economic justice today, not tomorrow? We don’t do prevention, but every day that a new woman is living with HIV, we know what she’s going through. It breaks our hearts. But the degree to which we can move stigma, move policy, I think we will have done something.
Ultimately, the balance of power, policy, and decision-making I want to see when Naina and I move on—and that there are two new women, whether queer, trans, Black, non-Black POC women that are bringing some new, fresh ideas, and literally fresh eyesight. It’s exciting at the same time that it’s heartbreaking that we still need to do this.