The following is a transcript of the conversation between Karl Schmid and executive director of the Southern AIDS Coalition, Dafina Ward.
KARL
Welcome to Plus Talk on Plus Life where we’re all about turning positive into a plus. Today, my guest is Dafina Ward. She’s the executive director of the Southern Aids Coalition, an organization that is doing phenomenal work. And, you know is it fair to say Defina that sometimes it really does feel like an uphill battle there in the south when it comes to HIV aids?
DAFINA
It feels like an uphill battle here in the south on a lot of fronts. And often, yes, it does feel like we are, we have a victory and then there’s some other barrier ahead of us as we’re trying to do this work to truly address and transform HIV in the south.
KARL
Well, so for people who don’t know what you guys do, just give us a bit of an overview of what the organization does.
DAFINA
Sure. The Southern Aids Coalition was founded 20 years ago with the focus of increasing access to resources in Southern communities, so that we really had equitable resources to address the epidemic of HIV in the south. What we had seen up to that point was that cities on the coast, larger cities, where there had been decades of work happening around HIV, that level of support and resource had not been dispersed in the south to meet our needs. And so SAC was really born out of the necessity to effectively address the needs of folks living with and impacted by HIV in the region. And that’s the heart of what we do. We’re still advocating on a lot of fronts to address the same needs that we have in our communities.
KARL
And I think it’s interesting as you’re about to celebrate a year in the executive director chair on world aids day. Congratulations, but also the theme of the theme of this year’s world aids day is end inequalities, end aids. And that really goes to the core of what you guys do down there, because with something like 52% of undiagnosed HIV infections all in the south.
DAFINA
Yes, absolutely. You know, when I have these conversations with folks who aren’t really familiar with the way that HIV impacts the Southern United States, I often start with a map. A map that the NAACP created in the early 19 hundreds that showed the rate of lynching across the country. That showed the rate of racial violence that severely impacted Southern states. And if you layer so many other maps on top of that over the past 100 years, you continue to see the inequities. You continue to see the barriers and challenges facing the south. And so I think that this year’s theme is spot on. Is that if we don’t address inequality, if we don’t address the foundational barriers, particularly here in the Southern United States, we will not end the HIV epidemic in our community, period.
KARL
How much does stigma play in all of this? When you look at the numbers of what you guys have pulled together. You know, one in 48 black women is likely to be diagnosed versus one in 880 white women. The stats go on and on, and it’s quite startling. How much is stigma to blame?
DAFINA
I think stigma is to blame on a lot of levels. And we have to recognize that stigma in itself is so subjective. So there’s no one size fits all remedy to addressing stigma. It really depends on how a person perceives a situation, how it lands on them based on their own trauma or lived experience. And so it’s so layered. And I think that is what we really have to address. My colleague, Gina Brown often says that stigma is an onion and not an apple, right. And so it’s like we have to recognize that there’s layers of pain and trauma and misinformation that has to be effectively addressed in order for us to really hone in on the way that stigma is impacting our communities. Stigma shows up as people feeling like they won’t be impacted by HIV. That is so far out of the realm of their reality, that it’s not even on their radar. And so often that’s perpetuated by our healthcare delivery systems, our community-based organizations, where people are made to feel like it only happens to certain people. It only happens in certain spaces. So folks go without being tested. And so by the time they are tested so far down the line that they’re often dually diagnosed in communities that are most impacted with HIV and aids. And so there’s just a range of challenges. And so there’s no limitation to where we need to go to have these conversations, because we truly have to meet people where they are to educate them, to make sure we’re touching people where they play, where they pray, where they do all the different things in the world to really eradicate stigma around HIV, and health and wellness in general.
KARL
Yeah, and you know as I mentioned at the top there, you’ve held the executive director chair for a year now, which is great, but you joined the coalition in 2018. In that time, ’cause I don’t want to be all doom and gloom here. In that time, what are some of the positive changes that you have seen come about that you’re really proud of, that perhaps you know, those of us on the coasts are not hearing about.
DAFINA
Hmm. That’s a really great question. I think we’re seeing some really powerful work happen in state-based advocacy, and really seen grassroots groups, community groups, really getting a voice in legislative processes. Really being out there you know, for so often I think that advocacy and policy focused work has felt far removed from community. And now we’re starting to see our community is very much engaged in that work. I’m really most proud, I think right now of the emerging leadership we’re seeing in HIV focused work in the south. There are so many young organizations. There are so many groups who have been in their communities, you know, feeding people out of the trunks of their cars, doing condom distribution on their own, who are now finally being resourced to do this work in a coordinated way, and getting the support needed to do that. So now we’re very focused on how do we sustain that work? How do we, how can we be assured that those organizations and those folks who are closest to the work continue to have the resources they need to do to deliver services. And honestly, to even teach the systems that be how to serve their communities better. So I think I’m most excited about that and all the new relationships and SAC is building, and not just preaching to the choir. I think that’s a big part of this work is we’re not just talking to the people who were engaged in this work already, and engaged in these conversations. And that’s how we’ll really make, I believe the greatest difference. If we get out there and have conversations with folks that are truly intersectional to our work in a meaningful way, and really work together to address the needs of our communities.
KARL
You know, we talk about U=U, “Undetectable = Untransmittable” a lot on Plus Life. And it certainly changed my life when I found out about this messaging. That was you know, that was 10 years into me living with HIV. As someone who proudly talks about U=U a lot, much to some people’s annoyance I’m sure, I do often hear though that this very basic message doesn’t seem to be getting through, especially in the south. As a white man, what can I do, honestly, what can I do to help facilitate those conversations? Because to me, U=U, “Undetectable = Untransmittable is the most like just smart, basic thing ever. Get undetectable, you’re untransmittable. That’s a huge game changer for people. Why is it not hitting home as much in the south? And what, as I said, what can I do as a white man to put my voice to it, but, and sort of you know, have people hear it without people going oh yeah, it’s all good and well, him saying that white man of privilege, he’s got health insurance and all the money and he can do whatever he wants, which is a very, very fair response.
DAFINA
Yeah, yeah. I think there’s several things. I think one of the challenges we have in many places in the south, I’ve talked with people, with patients who have gone in for care, whose doctors and healthcare providers had no idea what U=U even was. So you’re dealing with you know, service delivery where providers may not be sharing that information. You know, and as a white man showing up in spaces with all the privilege that you noted, bring a chair with you to those spaces. I think that is the greatest thing we can do is provide space and opportunity for leaders who do reflect communities that are most impacted by HIV to have space. Bring black, same gender loving men into those spaces, Bring black trans women into those spaces, and are Latinext, you know queer, and LGBTQ+ communities like bringing them to the table for this conversation. And also what does that look like for cisgender women? How do we message it in a way where we help everyone to understand that U=U isn’t just about one group, that it’s about all of us being in community and the power of that. And you make a really good point about being insured because so many people are not, and they’re in the south, where most states do not have Medicaid expansion. There are so many, there are millions of people who are uninsured, who are not engaging in any type of healthcare until it becomes extremely dire. And even then it’s gonna be any in emergency situation where these conversations aren’t happening. So there’s just a lot of work to do to make healthcare and information, accurate information like U=U, more accessible. And so that communities see themselves in it, which is often feedback that I hear is like I don’t know if that really applies to me. I hear white folks talking about it, but as that’s something, but I can’t even get to that conversation because there are so many other barriers in the way.
KARL
Well as you said, Defina, we have a lot of work to do. And I am so grateful for the work that you guys are doing there. And for all the work you do. Congratulations again on one year in the executive director, chair. Keep sitting in that chair and doing amazing work, Dafina Ward.
Thank you so much. Lovely chatting with you. Great having YOU on the program. That’s all the time we have for today. If you want more information, be sure to check out the website PLUSLIFEMEDIA.COM, and you can follow us @PLUSLIFEMEDIA, and on the website, we’ll put up all the information about the great work that Dafina and the gang are doing. So until next time, stay safe, wash your hands, wear a mask, do all the right things, and just be nice to each other. See ya.