Elaine Gibson, 28, is someone who derives pride from being of service. Originally from Sikeston, Missouri, she moved to St. Louis to follow her dreams to work in the HIV field. Marshalling her college education and lived experiences, while testing her faith, she applied to be a support worker at Williams & Associates, a St. Louis organization that addresses health disparities with a focus on HIV/AIDS and Black communities. When she got the job, she packed up her life and moved to the city. For her, working with people living with HIV was nothing new. She grew up with a mother and two sisters living with HIV. In the interview below, Gibson talks about her work, family, and the role that sharing Robert Rayford’s story can play in tackling stigma.
Theodore Kerr: What got you involved in HIV?
Elaine Gibson: A lot of different things, but mainly my family. My mom and my two older sisters are positive. When they passed, I knew I had to do something to keep their legacy alive. But I didn’t know what. So once I went to college, I started volunteering at AIDS Project of the Ozarks. Then, after college, I started working in marketing, but I still had a passion to be involved in AIDS work. So, once I saw the posting for the job at Williams & Associates, I applied and had faith it would work out. So far, it has.
TK: I love that idea that being involved was a way of keeping the legacy of your mother and sisters alive.
EG: I knew I could help. I feel like sometimes [HIV-negative] people hold back getting involved because they feel like, “Oh, I don’t walk in ‘their’ shoes,” and I get that, but for me, I was like, I’ve walked beside them, so I can recognize the struggles, and maybe I can help make the walk easier.
TK: Did you face stigma related to your mother and sisters living with HIV?
EG: Yes and no. We did not all live together, but I remember bleaching after using the restroom and not being able to share food with my mom. And this was in the early 2000s. It was rough but also just a result of them not having the right AIDS education. Like, my grandmother had the same out-of-date mindset as the Missouri government when it comes to transmission. She just didn’t know, and I think no one knew how to help her understand. If someone had, I think she would have acted different.
TK: Can we talk about your job?
EG: Sure. I am the psychosocial support coordinator at Williams & Associates here in St. Louis. That means I provide group and/or individual support and counseling services to assist eligible people living with HIV to address behavioral and physical health concerns. With that, I am responsible for three different groups that serve people living with HIV: Art and Soul, which is a mixed-gender group; Essence of Ebony, for newly diagnosed women living with HIV, and Brothers United in Support, which is a group for young men who have sex with men. I don’t host that group, two of my male peers do. But I host the other two. Our groups are all trans inclusive. Community members can get a referral through their Ryan White case manager.
TK: What is the group work like?
EG: We talk, paint, exercise—anything that helps support people staying in care. That is the goal. I see my job as providing a place where people can get support. This means going with the flow. You can never know what will trigger someone. Like, for example, someone might bring up stigma, and from there, we may talk for an hour or two about people’s relationships with friends and family.
TK: I was wondering about that. I wonder if you all talk a lot about disclosure?
EG: I’m going to say yes and no. In terms of the groups, no, because everyone knows in order to be in the space you have to be positive. But when it comes to other people, I’m going to say yes. There is a real fear around how other people are going to respond. From running the groups, I can tell you whenever someone has a negative experience disclosing, the response is often, “I’m shutting down, and I’m not telling anybody again.”
TK: Do you think it is made harder for folks who live in St. Louis?
EG: Stigma makes it harder for everyone, no matter where you live. But places like Atlanta, New York, etc., make being positive or out with your status appear empowering from the various ad campaigns they do.
TK: Do you ever feel like those campaigns focus too much on a person living with HIV rather than shifting attention to racism, or poverty?
EG: I get what you’re saying. It’s like, “Why? Why is there even a problem? How did the epidemic even come to be so bad?” But at the same time, I like the campaigns because they are relatable. It depends on the campaign, though.
TK: There is this one that says, “HIV Stops With Me.” It annoys me. But hearing you, I realize I’m seeing it from a specific point of view. Maybe having representation of a person living with HIV can be more powerful than whatever message is attempting to be communicated.
EG: Yes, different perspective, and different methods give people different things to consider.
TK: Oh, that is a good segue into talking about Robert Rayford. When did you first hear about his story?
EG: We discussed Robert Rayford at my work, and also we have a testing room named after him.
TK: What does it mean for people in St. Louis to learn about Robert when engaging with an AIDS service organization?
EG: I think we would be doing ourselves and others a disservice by not acknowledging where he is from. His roots are here, and people should know that.
TK: Does Robert’s story makes it easier to tell your family’s story?
EG: Yeah, for sure. I mean, within Black community, there is a saying: What happens in our house stays in our house. So the fact that we are only really talking about Robert now is not really shocking to anybody, and I do believe he has family here who will share what they know one day.
TK: I hope so, when they are ready. You know, his mother died in 2011, his brother died in 2007, and it is hard to even find where their final resting place is. Yesterday, I was able to visit the graveyard where Robert’s maternal grandparents are buried, but even that ended in mystery, because their plots are in a part of the cemetery that have been badly neglected, and the gravesites are being swallowed by the earth.
EG: Well, I can say that being open to his story helps us be open about our own stories, gets us away from focusing on the wrong things.
TK: Agreed. When it comes to Robert, I know that a lot of people are curious about how he got the virus, and I get that, but for me that is not where the power of his story is.
EG: It was always interesting to me when people became curious about my sisters and mother. Like, when you tell someone you have cancer, no one really asks you how you got it. They are more likely to ask you what you need.
TK: Maybe we should all start offering to make casseroles for when people share their positive HIV status with us.
EG: Help stop stigma before it starts.