“Guilt, shame, and blame can be a death sentence to many people. So love yourself, forgive yourself, and love yourself some more.” This is an important message from Joan R. Ferguson, a long-serving international AIDS activist and educator based in St. Louis.
In the late 1980s, Ferguson was working for a local newspaper when a fellow journalist and friend “disappeared.” She later found out he had been diagnosed with HIV and died soon after of AIDS-related complications. In response, Ferguson and another friend signed up for the American Red Cross African-American HIV/AIDS Prevention and Education Program, to better educate themselves and their community.
Since then, Ferguson has worked in HIV/AIDS advocacy, education, testing, and referrals in Missouri, Illinois, across the U.S., in the Caribbean, and in Africa. She is a trainer for the Center for Disease Control and Prevention (CDC)’s evidence-based interventions, Sisters Informing Sisters about Topics on AIDS (SISTA) and Women Involved in Life Learning from Other Women (WILLOW).
The majority of the people Ferguson works with are gay men and cisgender and transgender women. Her experiences have shown her how often women, regardless of where they live, will seek out services and each other for support. She recalls being at a market in Tanzania and noticing how a woman might be “selling their crafts, fruit, or eggs, and next to that they had information on HIV and AIDS.” Men, on the other hand, she feels, have been socialized away from asking for help, especially when it comes to living with illness, leading to denial.
To deal with the epidemic, including denial, Ferguson feels that people within the AIDS response need to do a better job of meeting people where they are at, both in terms of communication and location.
“We can acronym someone to death,” she says, suggesting that more outreach workers need to be breaking down the concepts of prevention in relatable and creative ways. She suggests educators ask themselves, “Can you talk to people in a language that they understand? Can you use an analogy? Can you show them something?”
For her, this approach also means hitting the streets. “You can’t just do this work Monday through Friday, nine to five in your office. You need to get your behind outside,” advocates Ferguson. “You need to go to where the people are, whether it be the stroll, a club at midnight, the corner store or bodega, or the neighborhood block. You’ve got to get out into the communities you serve and be a foot soldier like we used to be.”
In the following interview, Ferguson shares with Theodore Kerr about how the landscape of AIDS work has changed over time within the Black community, what Robert Rayford may mean for longtime survivors, and the need to talk to everyone about pre-exposure prophylaxis (PrEP).
Theodore Kerr: Can you say more about how you and your friend knew that the information about HIV had to come from you, as Black people?
Joan Ferguson: Remember, Ted, the disease was understood to be a gay white man’s disease. Folks of color said, “Oh, we don’t have to worry about this.” But soon, we started losing friends. I remember, you would go to a gay club on Friday and the next Friday they’d have a list of names of people who had died that week. And then Magic Johnson, Eazy-E, Arthur Ashe—folk of color—were diagnosed with HIV/AIDS. We wanted to be in denial, but as the disease progressed, we no longer could. Even folks who were considered heterosexual were starting to see how it was impacting the community at large. It was very important for me as a woman of color to be able to share information with people who look like me, talk like me, and who had this shared history of being Black in America. I felt that it was my responsibility and obligation to get as much factual information as I could and share it, wherever I could: churches, street corners, schools, community centers, card tables at someone’s house.
TK: Were some people in denial that HIV could come to St. Louis?
JF: Yes. When we first heard about what was then called GRID [gay-related immune deficiency], it was connected to gay men in San Francisco and New York. We started hearing of cases in Miami. Then Atlanta. But until it hit home, people still thought, we don’t have to worry about this here. Well, we know what happened.
TK: Can you tell me a little bit about your life and work now?
JF: I’m an independent consultant, and I provide capacity-building assistance as a trainer, facilitator, and coach for several CDC evidence-based interventions.
TK: We talked about how there was bias around race, sexuality, and geography associated with the virus; did you also see bias around gender, where women felt they weren’t going to be impacted?
JF: Oh yeah. As long as we kept hearing that it was a gay disease, we didn’t think that we would have to be worried. But I believe with Magic, and Eazy-E, it hit us: Wow, this can impact us too.
TK: How did that change your work?
JF: We started seeing churches wanting to do workshops. They were slow, believe me, but it happened. In St. Louis, Progressive Missionary Baptist Church and St. Alphonsus Liguori “Rock” Catholic Church were the churches that started doing workshops, talking about it, letting people know about testing and how people could protect themselves. It had major impact in exposing the faith community to how HIV/AIDS was impacting Black communities.
TK: When did you first hear about Robert Rayford?
JF: In my American Red Cross course, there was a discussion about a young Black man in St. Louis who had died in 1969 of what we now know to be complications related to HIV/AIDS. I remember the ABC World News broadcast about Robert Rayford, and I also remember that, ironically, Max Robinson, one of the first Black national newscasters on ABC World News, later died of complications of HIV/AIDS.
TK: Why do you think more people don’t know about Robert’s story?
JF: I don’t think enough people talk about HIV, period. But also, at the time, I don’t believe we pushed his name out there the way we could have.
TK: What do you think would’ve been different if people had?
JF: I’m not sure. It is delicate. It is not like you were going to see tourism signs at the time on the road that read, “COME TO ST. LOUIS, Earliest Known Location for HIV in the Country.” But maybe we should. Also, I believe that the community at large and especially the African-American community did not want to own the story. The stigma associated with HIV is enough. Already we think, why us? Why is it impacting our community? I think it was something that folks wanted to avoid.
TK: Do you think there could be something positive in telling Robert’s story?
JF: I believe so. Facts based in accurate information is important to know. He is a part of history, the legacy of HIV. Some people may see it as a negative legacy, but it’s a legacy just the same. Because samples of his body tissues were kept for almost 20 years, we were now able to go back and look at that and say even before 1981 when the CDC released its report, it was someone here in St. Louis who presented symptoms.
Even when we recently observed National HIV Long-Term Survivors Awareness Day, I lit a candle and mentioned Robert’s name in memoriam along with others who didn’t survive. His story helps to dispel a lot of what we’ve been told and reminds us that there is more to learn.
TK: What are some challenges for you, or are there any challenges for you doing your work in Missouri?
JF: The criminalization of HIV is a big deal. It has forced a lot of people back into the closet in terms of their status. If you are already afraid that you’re going to be rejected, denied, ostracized for HIV, and now have to think about the consequences of condomless sex with someone, even undetectable, it can be scary. Nobody wants to be accused of exposing somebody.
TK: You mentioned undetectable—do people also talk about PrEP a lot around here?
JF: Not as much as I would like to hear, and not enough in terms of women and folks over 50. Especially when it comes to seniors. The culture thinks that once someone is over 50, sex is all over. But, honey, the seniors are getting it in, believe me. And think about it: You’re a 60-year-old woman, no longer worried about getting pregnant, so you are not thinking about condoms, or STIs. But listen, with the advent of Viagra. … How about this, when we go to senior buildings to do HIV/STI prevention education, they ask, “Do you have condoms? Lube?” I always say “Yes,” and tell them I can bring more.
We’ve got to start seeing people as being sexually active across their life, even up until the day that they die, and be willing to offer them what they need to have healthy and safe sexual relations.