“I don’t care who you sleep with, I don’t care how or how you identify as this message of telling people to get tested and talking to them about prevention is for everyone. And just because you go and get an HIV test or go take an HIV test doesn’t mean that there’s a problem with you.” Karl chats with stigma warrior and activist Dee Conner about her HIV journey.
Driving out stigma campaign can be found here.
The following is a transcript between Karl and Dee.
DEE
Stigma is one of the big pieces in the black community.
KARL
Hello there. Welcome to plus talk on plus Life, where we’re all about turning positive into a plus. My guest today uses the word positive positivity in her name. It’s Dee Conner. Good to see you. My fellow HIV Stigma Warrior.
DEE
Good to see you too, Karl. Good to see you.
KARL
We’ve got a lot to talk about. Let’s jump into it. You were diagnosed HIV positive in 1997. You were just 27 years old. You and I have that in common. I’m the same age. Oh, okay. What did you, what, what did you know about HIV and AIDS at that time and what were some of the challenges that you faced as a single black mother?
DEE
Ooh, Karl. I didn’t know anything about HIV or AIDS. I didn’t know anything about it. I tell everybody it was a thing where you just know from hearing it on tv, Eazy and Magic Johnson, that’s all I knew. I knew nothing else about it.
KARL
Tell me about those first few days.
DEE
Oh, they were terrible. I was scared. I was confused because I didn’t understand how I contracted HIV and I just felt lost. You know? I felt lost and I, and, and with me, I always hear people say, you know, oh, who’s gonna love me again? That wasn’t my thought. My thought was, who’s gonna take care of my daughter? That was my only concern because I was so close to my 6-year-old daughter, I was afraid that somebody else was gonna have to raise her. That was my only concern.
KARL
Hindsight is a wonderful thing. Now, in, in where you are in your life today, when you think back and look at those moments, how do you feel? How do you put it all together knowing what you know now?
DEE
Oh my gosh. I always tell people, if I knew what I knew now, I probably wouldn’t have been stuck in depression. I probably wouldn’t have became an alcoholic. I probably would’ve been able to live my life a lot more differently if I knew what I knew now. You know, if I knew then what I know now, things would’ve been totally different. So 18 years, 18 years, I, I sulked basically.
KARL
What do you know now that you want people who were in your position that time, all that time ago, what do you want them to know that you know now that would make it all very different?
DEE
That there’s nothing to be afraid of, that you can live with HIV, that you’re nothing different than what you were before you found out about your diagnosis. I know now that take my medication, I can live a long, healthy life. Don’t be afraid or take what other people put on HIV in the world and put it on you, because then that turns into internalized stigma. So as long as we love who we are and the skin that we’re in, and don’t pay attention to the outside world about how they view HIV, you’ll live a good life.
KARL
You and you. Do you really? Yeah. It’s a great message and you do such good work and you’ve, you know, produced a fantastic short film, but this message as simple as really as it is, is still not being heard by members of your community. Why is that? And tell me about some of the work that you and all the great people around you are doing to make sure that this is becoming something they understand.
DEE
Okay, so as you see me, I’m a black woman who lives with HIV. We are 58% of the diagnosis out of all women in the us. And it, it starts with stigma. Stigma is one of the big pieces in the black community, but not only that, the social determinants of health, access to care, poverty, homelessness, it’s, it’s a whole big piece when it comes to living with HIV in the community that, that I’m from. And, and so HIV is a taboo. Nobody wants to talk about it. And I feel, I feel that it comes from the eighties or the nineties, even now, when people in the black community find out that you’re gay, they take HIV and they think it’s a a gay, a gay thing, but it’s not. It’s in everybody’s issue. It’s in everyone’s issue, but nobody sees it as that. So as soon as you say HIV, now people have questions, especially being a woman living with HIV. So where did you get it? How did you get it? Who did you get it from? And you don’t look like you have HIV. So how is HIV supposed to look Karl
Like this, like that?
Like me and you,
Like me and you like our sisters and our brothers and our parents and our pastors at church and even our doctors who take care of us, right? Yep,
Yep.
KARL
But it’s still not getting through. The biggest problem is you mentioned black women disproportionately, the rates of infection are higher. How do you start that conversation with people in your community to start normalizing it? Where does that start? How do you do it? Because we’ve got you equals you undetectable equals untransmittable. We’ve got all these fantastic advocates like yourself, BrYan C. Jones, Bruce, Richman there’s a lot of people out there doing it, but we’re still not cracking the code.
DEE
I say taking our faces and putting a face to HIV, especially in the black community, is gonna help show people in the black community that you can live with HIV, and that there’s nothing for anyone to be fearful of. Constantly educating, constantly putting our voices out there, constantly creating campaigns to reach people in the black community, putting that message out there that they need to be tested. Prevention. We just have to constantly keep doing this over and over again. And you do reach people and I say, as long as we reach one or two, we’re doing our job. Because then those one or two people will go and they’ll tell someone else what they learned and then those people will go tell other people what they’ve learned. So it’s like a ripple effect. It’s not a big ripple effect, but as long as we can reach someone, it’s gonna make a difference.
KARL
Yeah. It all starts with that one conversation. What do you want your brothers and sisters to know about prevention as treatment and about testing? What’s the message you want them to hear about those two things?
DEE
Prevention as treatment. That’s you equals you, Karl, that’s my most favorite campaign, my favorite message because it, it takes a weight off of all of us who are living with HIV. But not only that, it’s helping people to get tested because now they know if they have contracted HIV, that they can live a great life. So it’s helping people to wanna get tested and to wanna get into care. So I’ll constantly speak about you equals you, I’ll never stop talking about it.
KARL
Yeah. And Dee think an important thing to point out, and I’ve been saying this a lot recently, is you don’t have to walk into a clinic anymore to go and to get tested, right?
DEE
Nope. Nope. You don’t have to walk in a clinic. You can go to your health department’s website, they can send you an HIV test, you can send it back. It’s just as simple as that. Yeah, that’s, it’s that simple.
KARL
And Dee, as you were saying earlier there, a lot of people just still think of this as a gay dude’s disease. And we know in your community there’s a lot of men who have sex with men who don’t identify as gay. How do we get this messaging through to them without them feeling like, I guess their masculinity is being called into question because of outdated views on homosexuality and things like that.
DEE
I don’t care who you sleep with, I don’t care how or how you identify as this message of telling people to get tested and talking to them about prevention is for everyone. And just because you go and get an HIV test or go take an HIV test doesn’t mean that there’s a problem with you. Everyone in the community needs to, needs to have an HIV test. I can’t actually really, I’m gonna be honest with you, answer that question because I’m not a man, I’m not a gay male. I’m not a man who identifies as sleeping with men. I can’t, I can only reach them by putting a face to HIV and letting them know that if they have contracted it, that it’s okay and that they can live a long life. It’s just hard for me to really respond to that question for you because I’m not a male.
KARL
Fair enough. You, yeah, I, I hear what you’re saying there. Talk to me about the Driving Out stigma campaign that you launched in 2019, what that is about and how it works.
DEE
Well, I came up with this campaign driving out stigma. I got the community to jump behind me. Those who donated, I created a magnet, put it on the card. We had magnets all in the car getting tested, U equals U I mean, whatever you could think of there. The car was full of magnets. And then in the back of the window it said U equals U. Do you know U equals U Then a person living with HIV cannot transmit. And then it had a phone number and prevention access campaigns website, and we did, we were supposed to do two weeks of southern states. And why we did this, Karl, it was because we wanted to reach communities in the South to let them know about you equals you to stop and have conversation stations with people, even at the gas station, because when you bring this attention to this vehicle, people wanted to ask us what were we doing? And so that’s how we struck, struck strike up conversations to talk about HIV in the community. We had an event somewhere every time we went, we went to a AIDS walk in Louisiana. They gave us a free table to talk about why we were there, and we spoke with people about it. We had a, a luncheon in Atlanta with women. We had another one in Baton Rouge. So every state we went to, we, we, we accomplished something.
KARL
Dee Connor, thank you for making the time. And again, thank you for all the great work that you do in the field in sharing your truth and all of that as well.
DEE
Thank you, Karl. Thank you for having me.
KARL
Always. That’s gonna do it for this episode of Plus Talk. If you want more information, be sure to check out our website plus life media.com. We’ve got this episode and many, many more up there and lots of really cool stuff. And please do us a favor, like and follow us across social media. We are at Plus Life Media on all platforms nice and easy. Until next time, be nice to one another. Say hello to a stranger perhaps. We’ll see you soon. Bye-Bye.