Tim Murphy: Hi there, Dafina! Thank you for talking with us today. Start, please, by telling us about how you got involved with HIV work and the community.
Dafina Ward: Hi there. Well, I got into HIV before I knew I had. When I was a law student at Temple in Philadelphia in 2001, I worked with a homeless advocacy project where a number of the clients were living with HIV. A lot of the work was about securing their Social Security benefits and making sure they had access to their HIV meds. At the time, I hadn’t even thought that a number of people in that population would be living with HIV, but it showed me the importance of that work when it came to the critical need to retain health services.
Then the following summer, I was a fellow at the Southern Poverty Law Center, where my primary case was a class-action suit on behalf of people incarcerated in some of the rural county jails in Alabama, where a number of them living with HIV were not being provided access to HIV meds. So that was another touchpoint for me that dealt with the complexity of addressing HIV in our community in the South. I recognized then that HIV was one of a number of challenges for folks in the South with limited access to resources. Many of those folks were incarcerated, of course, because they couldn’t afford to pay cash bail.
Then I went into private law practice in Birmingham but quickly realized I wasn’t sure if it was for me. I’ve always wanted to be closer to the work of creating change in communities, but I didn’t know what that would look like.
So I was recruited in 2005 to work as the coordinator of the Alabama Community AIDS Fund, which at that time was the Alabama arm of the National AIDS Fund, which is now AIDS United. It was just a little part-time evening thing, working on building an infrastructure for raising local money to support community-based HIV prevention programs in the South. In the early 2000s, people started recognizing challenges around HIV here that were different than elsewhere, and also that the money wasn’t there. That was when SAC leaders were demanding that the federal funding formula for regions and localities be changed to better serve the South, which it was in 2006.
So I did that for several years. Then AIDS Alabama was awarded a grant via the National AIDS Fund and Johnson & Johnson, called “Generations,” and that was innovative because it was funding specified for the creation of homegrown interventions serving women living with or impacted by HIV. So I led the development of a program called “Beauty and Knowing,” a primary prevention intervention that we implemented in cosmetology schools in Alabama, with a focus on Black women ages 18 to 34.
Murphy: What a cool idea. Whose idea was it?
Ward: Mine! That was my baby. So, we’d go into beauty schools, and the stylists started telling us that they wished they’d learned these [sexual health] things in school, because they teach you hair but not all the other things that clients bring to the chair. So the cosmetology schools said, “You wanna bring us a class, and we don’t have to pay for it?” They saw the value of bringing us in.
So at one of the schools, a five-session intervention became a semester-long engagement. At this school, you could enroll without a GED, and many young single mothers who had dropped out of school felt like this was the only way to build a career and create income without going down other paths.
We recognized very quickly that we couldn’t talk just about HIV. One of the young ladies in our program was murdered by her boyfriend, so we also had to talk about intimate partner violence and sexual coercion.
So after that, I shifted into a prevention leadership role at AIDS Alabama, managing traditional health education and community-based programming. At the time, AIDS Alabama had also opened a drop-in center for young, Black, same-gender-loving men, which was also under my purview. That really expanded my understanding around prevention and programming. And we began a retention-in-care program with peer navigators.
Murphy: So, you are no longer practicing law by this point?
Ward: I became a recovering attorney around 2009 [laughs]. I tried to do both, and it was really hard, so I let go. The change felt right. I had my first daughter in 2005, and I recall going back to [law] work and, some days, just really hating it. I wanted work where I could justify not being with my child, and I just couldn’t justify sitting there doing bankruptcies. I’ve never been motivated by money.
Then, in 2015, I was recruited by an organization called Provide, which, at the time, was based in Massachusetts, but it was building a team in the South around the mission of increasing access to abortion referrals for women in low-resource communities. I’m very passionate about women’s health.
Then, in 2017, we moved to Hilton Head for my husband, who came here to be the executive director of Historic Mitchelville Freedom Park, the first self-governed town of formerly enslaved people in the U.S. It was supposed to be the model of what Reconstruction should be, which did not happen, but Harriet Tubman brought people here.
And then in 2018, I was recruited by SAC to administer the Gilead COMPASS money because of my experience around grantmaking and review. We’re actually closing out the first phase of COMPASS right now and are excited to rev back up in January. I understand the conversation about Gilead and taking Pharma and corporate dollars, but I’ve been so proud to be part of it. We’ve been able to put millions of dollars into Southern states. There have been people who’ve been doing this work on the ground in their communities for years who were not able to get funding or be taken seriously prior. They were pulling programs together using bubble gum and paint, trying to serve their people.
And via COMPASS, we’ve seen leaders grow and build programs that are being sustained, people who are living with HIV, Black and Brown LGBTQ folks, sometimes Spanish-speaking organizations. We’ve really tried to create a funding structure that is low-barrier and supportive, and I’m really proud of that. COMPASS grantees will call me and say, “Can you walk us through our work plan?” or “Can you look at our flyer for our event?” These are very personal relationships. We told folks to not worry about being perfect. And with COVID, we were able to be extremely flexible when people said their clients needed more food, housing, tech access for telehealth.
Murphy: That is so cool. Can you give a few examples of community programs that COMPASS has funded?
Ward: The Mississippi Center for Justice developed a stigma reduction program where they were able to establish support groups throughout the state and train them in identifying stigma, including as it appears in public policy.
I’m also really proud of what we did with THRIVE SS out of Atlanta, funding their Project Griot film Outrun the Sky, as well as screenings and talkback sessions in cities throughout the South.
And we funded Hillsborough Action Plan, an organization out of Tampa, a business incubator that saw the need for programming focused on entrepreneurial skills for people living with HIV. They were hearing about a lot of challenges around not just job readiness but how to find the skills to start one’s own business, things like public speaking.
At SAC, our focus within COMPASS has been stigma reduction. So we’ve also funded community-level media campaigns. Our research showed that in many smaller communities, nobody was talking about HIV. There were no billboards, no radio ads—it wasn’t a part of public discourse. Organizations had been begging for dollars to start such campaigns. So in Wetumpka, Alabama [population roughly 6,500], they had a billboard campaign that changed every quarter, each one featuring someone living with HIV.
Due to the funding, the total media reach across the region has been somewhere around 40 million, based on billboard and social media campaigns. And we require that all programs and campaigns we fund are informed by and center the voices of people living with HIV. A few times we’ve told grantees that something wasn’t acceptable because they didn’t include the community in the process.
Murphy: So then you stepped in as interim head of SAC last year, and now you’re the actual head. So tell us what SAC does exactly.
Ward: Our 20th anniversary will be in 2021. It was created in 2001 because there was a lack of prioritization of the needs of Southern communities [around HIV/AIDS] at the federal level. Kathie Hiers at AIDS Alabama, particularly, demanded that the South be heard and resourced, so we’ve worked diligently to make that happen. Over the years, SAC has pulled together advocates across the region to work on common priorities that could be lifted up into our state houses and also in D.C.
Murphy: What were identified as the unique needs of the South?
Ward: Our advocates are working with state houses and senates that are still heavily Republican and composed of folks who don’t understand what we do. We’re talking heavily red legislatures that have not expanded Medicaid, where there’s a lack of legislation protecting people based on sexual orientation and gender identity. Then there are other layers working against us: the highest rates of poverty, the lack of jobs, lack of access to health care, lack of access to comprehensive sex ed. In most Southern states, sex ed is required to be through an abstinence-focused lens. And most people here are not living in large cities and have to drive long distances to obtain health care and other services.
Murphy: So what is your agenda for SAC in 2021 and beyond?
Ward: I’m going to be doing a whole lot of listening to individuals living with HIV. I want to know where the gaps continue to exist despite the fact that we’re seeing a lot of money being poured into HIV in the South. I’m not personally living with HIV, and I greatly respect the expertise and experience of those who are. I both love and have lost a lot of people living with HIV.
Secondly, it’ll be both our 20th anniversary and the 40th anniversary of the first time we recognized HIV/AIDS, so I’m going to be working on how we collect and hear the stories of long-term survivors in the South. We have a beautiful story to tell about where we’ve been and who we are. People relate to stories; there are lessons and inspirations in them. When we train people to talk to policy- and decision-makers, it’s about sharing their stories.
We’ll also be building our organizational infrastructure. SAC used to be two or three people—and in 2021, we’ll be a team of 10. That’s big growth for a small organization.
Murphy: Will SAC be doing any work in connection to the ongoing federal plan to End the HIV Epidemic (EHE) as it plays out in states and localities?
Ward: We’re involved in EHE specifically around technical assistance, and we’re also working with NASTAD [a national HIV/AIDS policy organization] around implementation of EHE plans. Last week, Baton Rouge held their first virtual HIV community summit where they announced their EHE plan, and we were a key partner in their planning and presentation. We want to support the real work in the region; we don’t have to be out front getting all the credit.
Murphy: Do you feel, as many have said particularly since Georgia went blue in the presidential election after massive turnout of new voters, that the South is on the doorstep of a more progressive era?
Ward: I believe—I hope—we’re seeing the last gasp of an overt type of racism and dog whistling. It’s such a desperate and obvious attempt to hold onto Jim Crow and all the things that give the South such a bad name—including laws and policies that work against marginalized communities. So I’m excited, but we have to be prepared to keep folks engaged in the fight, and not just on election day. We have to hold our elected officials accountable and ask them the hard questions. And we HIV organizations can’t stand on HIV alone. People in this region impacted by HIV are also impacted by a range of disparities and challenges, so it’s going to require us HIV advocates to expand our conversations and push harder into a new level of intersectionality.
Murphy: Finally, as we find ourselves in this very unusual and challenging COVID holiday season, what are your personal sources of comfort and joy outside of work?
Ward: The first Sunday we were sheltering in place back in March, my family started doing what we call “bedside Baptist,” from the Black church tradition when you don’t go to actual church. We’d record an old gospel song and do some silly skit and put it on Facebook, which we did every Sunday for 26 episodes until we ended in October. We’d have up to 500 views a week, and people who were home alone said they really enjoyed it. I thought my daughters would never do it, but for the most part they’ve been good about it.
I also started gardening, growing my own peppers. I love spending time with my family—we all still like each other! My girls are at home doing virtual school, so I’ve been managing everything that comes with that. But I feel tremendously blessed because everyone in my house is doing well and is still here. I try to be really appreciative of all the little things.