Of course our grandparents and elders are having sex. It’s important to talk to them about getting tested, too

The kind of research and outreach work that Megan Ebor does—including areas of social work, mental health, sexual health, gerontology, and community-based research—doesn’t quite fit the more traditional picture that others in her field thought it should. That’s probably why it’s been so effective.

In her films “Even Me” and “Even Me 2.0,” audiences learn about the experiences of older Black women living with HIV through interviews and information on prevention, and leave the films having taken action. At one festival screening, a man came back to find Ebor to tell her he got tested. Then, there was the time an eighth-grade class was attending a festival where her film was being screened and asked if they could watch it. Afterward, one of the eight grade students introduced herself to Ebor and later found her on Facebook and sent her a message.

“(She) wrote to me and she said, ‘When I got home, I talked to my granny about your film because my PopPop? He’s out there. So, I talked to my granny about your film and now she scheduled her appointment to go and get tested,’” she recalled. “This is why I do this work, I just can’t stop. It’s not even work, I enjoy doing what I do because I know it’s making a difference. It might be different from the traditional research methods, but I find that, for us and for our community, it speaks to us and that’s really all I’m concerned about.”

“Even Me 2.0” is being screened during this year’s San Diego Black Film Festival, which starts Wednesday and ends Feb. 2 at the AMC La Jolla 12 theaters. Organized by the nonprofit San Diego Black Film Center and started in 2002, the festival screens more than 100 films each year, including comedy, drama, animation, shorts, feature length films, horror, and music videos. Ebor’s film is part of the afternoon shorts package, starting at 12:30 p.m. Saturday.

Ebor, who is a filmmaker and assistant professor in the School of Social Work in the College of Health and Human Services at San Diego State University, merging science and the arts to create health communication films. She took some time to talk about her work, her film, and how her great aunt’s own health experience led her to do this work in the first place. (This interview has been edited for length and clarity. )

Q: Your work as a social worker with a concentration in gerontology, and as a filmmaker, is focused on merging the arts and science to provide a platform for groups of people who are often overlooked. Are you comfortable talking about how your family’s experience with an aunt’s undiagnosed sexually transmitted infection influenced the work you’re doing now?

A: It not only influenced the work that I’m doing now, it was the catalyst. I was in my master’s program at UCLA and my great aunt, she was having some cognitive decline. I talk about this in the film, so I don’t want to give too much away, but she was having cognitive decline that was just grossly overlooked by the medical profession. I was in my program at the time and my concentration in my program was gerontology, and I was looking for my life’s purpose. Like, ‘Why am I in this program? What am I supposed to be doing with this degree?’ Then, this situation with my aunt happened. She was isolating herself, she was becoming combative, and this was so out of character for her. What really infuriated me was the fact that her medical providers were dismissive of all of the things that were going on with her and just saying, ‘That’s what happens when you get old. These are normal signs of aging.’ I’m in the classroom learning this and I’m like, ‘No, that’s not it.’ When we found out this was an undiagnosed sexually transmitted infection, which was neurosyphilis because by this time it had spread to her brain, I was just floored. I could not get over what happened to her. She used to work in the medical profession and was very on top of her healthcare, very meticulous, so I thought if this could happen to her, how many other older adults is this happening to? Then, I thought about the intersections of her age, her gender, and her race and how those three things intersect to impact her health outcomes. So, I wanted to find a way to get the message out to older Black women that we have to advocate for ourselves. We need to get this information out, we have to insist on being tested for varying things that could possibly be going on. So, I just really wanted to get the message out there and I wanted to do it in a way that was accessible, in a way that folks could relate to. I knew that we couldn’t write a pamphlet about sexually transmitted infections in our community, so I said, ‘Well, we can make a film and people will watch a film, and if we make it in a way that we’re embedding this educational content into the narrative, then folks won’t even know that they’re gaining education while they’re being entertained.’ So, that whole thing around edutainment is where I landed.

Q: How would you describe the general conversation being had about sexual health and HIV/AIDS among older adults and Black folks, prior to the release of your 2012 film? And, how would you say the conversation has shifted in the years since?

A: There were scant articles written in the academic journals, so that’s another reason why I was like, ‘We’ve got to find another way to get this information out there’ because there were some articles written about this in the journals and all of the surveillance data with the CDC (Centers for Disease Control and Prevention), but it wasn’t trickling down. I went to get a Ph.D. and one of the biggest reasons why I did it was because I wanted to find a way to make this research accessible to the community, so that’s why I do community-based research where it doesn’t stop after the research project is done, or the research study is done, and you publish in these academic journals. Now, we have developed a tool that we co-created with community and now we can disseminate this within our community and get information to where it needs to be, where it can benefit the community.

Q: In “Even Me 2.0,” you revisit the individuals in the original film, 10 years later. What did you want to address in this film that may not have been said in the first one?

A: I’m glad you asked that because being on the road with the first film, it was a span of like 10 years and the questions that came up-whether we were in a community environment, in a senior home, all of these different audiences we had-I felt this would be the most opportune time to answer all of the questions that we’ve been hearing over the course of 10 years. In this film, we followed up with the main folks that we had in the film, beautiful, beautiful people who so generously gave of themselves in sharing their stories. Then, just talking about some of the methods that we have today that we didn’t have 10 years ago or 12 years ago. There is no reason for HIV to still be an issue, we have all of the tools we need to end the epidemic, it’s just a matter of getting the information out to the folks who need to have it. Folks need access to the medications, they need to know that they exist. I mean, you could take PEP, you could take PrEP, there are so many ways to live a healthy life free of HIV if we just get the information out there. So, I wanted to infuse that information into this new film so that people know that you can live your life, do what you want to do, but there are ways to do it that keep you STI-free, if you will. The medications are so far advanced. They have injections that you can take now, you don’t have to take the pills every day anymore. I wanted them to be aware that there are varying ways, you have options for treatment and for prevention.

I also wanted to follow up with the ladies. This is a deeper meaning for me as a researcher because, oftentimes, as researchers we’ll go into a community, we’ll get what we need from them, and then they never hear from us again. I didn’t want to be a helicopter researcher, I wanted to be one that walked the walk and talked the talk. If I’m doing community-based research, I truly want to embody every aspect of what that means. When I go into my community to do research, I make sure I follow up, I make sure folks know what the outcomes are, and I involve them in it. I feel like that’s the essence of what community-based research is; it’s not me going in as the expert, they are the experts of their own experience, right? By walking alongside them, it’s a way to get this information out in a way that resonates with us, that relates to us. You can look on a screen and you can see yourself, you can see your auntie, you know what I mean? So, it was important to go back and tell these stories of ‘Where are they now? How have their lives progressed?’ I think folks that come out to see the film will have some joyous moments, and we’ll have some not so joyous moments, but it was important to tell the stories because HIV is aging. The medications are so good that folks are living longer lives and what does that look like for someone who may just be newly diagnosed? They can look at this film and they can see the women who are thriving and what they’ve done to get themselves there. Then, they can see what it looks like when it’s not so positive. I think it’s important to have a balanced story to show both sides.

Q: Did anyone say anything, or share any perspectives, 10 years later that surprised you or stood out to you?

A: One of the ladies, her name is Joyce, she was the breakout star because she’s so colorful and so very truthful. I really enjoyed seeing her evolution because she went from, “I’m gonna have sex until the day I die,” to the second film where she’s really showing a different side, talking about how she got to where she was. She talked more, she was more vulnerable in the “2.0,” sharing about past traumas and how she was just surviving. The substance use didn’t really come out in the first film and she talks about that. I think, too, addressing the trauma and the mental health aspect of living with HIV or being diagnosed with HIV and what happened over the course of your life, those are the things that doctors, in a 15-minute visit, don’t get to see. So, if we have providers watching these films and they get to see the backstory, then I feel it could facilitate more compassionate care. Even amongst our communities, everybody has a story. The film, I feel, gives that opportunity to see the stories more deeply and that’s what you get in “Even Me 2.0.” For the first film, “Even Me,” it was very light-hearted, funny. Ten years later, they’re in a different place where they’ve been talking about this for over 10 years now, they can really tell you the nitty gritty: ‘This is what was going on. This is what led me to substance use. These are the past traumas that weren’t resolved and impacted my life in such a way that it left me vulnerable.’ I think it’s important and being able to see those stories, and then seeing how the women in the film were just connected with one another, was beautiful to see.

Q: According to the Centers for Disease Control and Prevention, more than 50% of people living with diagnosed HIV in the United States in 2022 were 50 and older, and people in this age group made up for about 16% of new HIV diagnoses in 2022, among people 13 and older. Older Black people in the U.S. also have a higher rate of getting and dying from HIV than other racial and ethnic groups, according to a 2019 article in the journal “AIDS and Behavior.” Can you talk a bit about what’s happening among older populations that is contributing to these numbers? And, what’s underlying the racial disparities between older Black adults with HIV and their non-Black counterparts?

A: That’s a good question. I often say, and my students will tell you, ‘We’re not talking about statistics, we’re talking about people!,’ but the people that represent those numbers, I would attribute a large part of it to the social determinants of health. I know a lot of people will be like, ‘Oh gosh, does everything have to be about race?’ Yeah, it kind of does. There’s not equitable access-that’s access to care, access to information, access to the things that are needed to live the most optimal life that you can. That is, in large part, why I do the work that I do because there are just some things that we have to do “for us, by us.” If we’re not doing it, it’s not a priority for other folks, right? So, when you look at the disparities and why the rates are so high, it’s multifactorial. There are a lot of reasons why, but focusing on the why and then what can we do to make it better? That’s what I’m hoping to do with the work, the research that I do, and keeping it community based and disseminating it amongst our community where we can have access to information and then navigating to get the medical care that we need.

Q: From your perspective, and from what you’ve heard from the individuals in your film, what has gotten better, or worse, in the past 10-plus years as it relates to conversations about the sexuality, sexual health, and sexual liberation of older Black adults? And, why are conversations centered around this topic important?

A: Let me just tell you, I love talking about things that folks don’t want to talk about. If you look historically, as a community we just don’t talk about certain things, so I wanted to flip that. I wanted to flip the script on that. It’s like, listen, we don’t have to be ashamed or embarrassed about sexuality, but we need to equip ourselves to do it in the best possible light where we can take care of our health and enjoy ourselves. I always want to talk about it and in my classes or when I do trainings with students, I often make them stand up and just say, “Granny is having sex.” Like, let’s talk about it. We say it all together and we say it out loud, and it’s like, ‘OK, let’s talk about sex.’ Oftentimes, culturally or historically, it’s just been a topic that we-not only us, but other cultures, as well-don’t really want to speak about in the open. So, it’s important for this liberation around sex because if we, as providers and as emerging clinicians aren’t comfortable talking about it, then your patients/clients won’t be comfortable coming to you about it. So, we have to kind of break down those barriers and reframe sex and sexuality so that folks can come to you when they have an issue and not feel shame or guilt about their sexual health. It’s part of our health and wellness, our overall health and wellness, so we can’t overlook the sexual health because when I refer back to what happened to my great aunt, it’s like nobody wanted to go there. No one even thought to go there for her to have a full battery of tests, so as long as we are in this state of discomfort around sex and sexuality, then we won’t be able to engage in the work that’s needed to keep folks holistically well.