When Gina Lathan Whitener was in graduate school in Illinois, she and some of her fellow students started an HIV/AIDS outreach program. They became certified health educators and went into the community on weekends to do outreach. In the evening, they would go to local clubs and districts known for their high-traffic drug use and prostitution. There they distributed condoms and information about local HIV/AIDS services.

After Whitener graduated, she went to Colorado and worked primarily in the courts, with women who were arrested for prostitution. When Whitener returned to Illinois, she was a well-seasoned community health worker. She joined the Illinois Department of Public Health HIV/AIDS section and was promoted to the position of assistant section chief.

Today, she’s the president and CEO of her own company, LathanHarris Inc., a program development, evaluation and communications firm, located in Champaign, Illinois. While there, Whitener added the title of film producer to her HIV community work efforts. She produced the documentary A Mirror to the Heart: Breaking the Stigma of HIV/AIDS. The film looks at African-American and South African youth affected by the virus, giving them an outlet to discuss their activities, ideas and personal experiences.

With your years of HIV/AIDS community work experience, what has struck you the most about how the virus started to affect the black community?

What struck me the most was that when I compared what I was hearing and what I was seeing, as compared to the statistics, the data didn’t match up with what was happening in the community. Many people were dying. A lot of times, people just weren’t having conversations about HIV. There was a lot of stigma and shame associated with HIV. I’ve known a lot of families who lost loved ones to HIV/AIDS. What I saw is that they weren’t able to experience the natural grieving process because there was such shame and stigma associated with the virus.

Tell us about what led you to become executive producer of A Mirror to the Heart.

What led me to produce A Mirror to the Heart was the stigma I saw that remained a constant from generation to generation in our community. While planning to do this documentary, just before that process, I talked to HIV-positive youth or those who had lost family members as a result of HIV. They wanted their story to be told; they wanted conversations to take place around HIV—in particular about the stigma and the shame associated with the virus. These young people also acknowledged that they wanted to continue with their lives, and they didn’t want to have to deal with HIV stigma and rejection. But a lot of them weren’t willing to be seen on camera.

In what ways did these young people help you with the making of the film?

They provided me with a lot of guidance about how I should structure the documentary. And they also gave input about the points I needed to address in the film. They didn’t want to be considered victims. They wanted people to look at them just as average teenagers who had experienced a certain situation. And they wanted people to know they still had dreams, hopes and aspirations. One big point was that they wanted people to know that it was OK for their kids to be friends with them—that they weren’t going to infect other teens with whom they came into casual contact. They also talked a lot about how young people were doing work in their communities. And it bothered them that a lot of times what we hear are only the negative things that young people—in particular, African-American youth—do. They wanted to celebrate the youth who were talking about HIV and had made the decision to be peer educators and were giving voice to an epidemic that is oftentimes silent. They were the most compassionate and wonderful group of people in the state of Illinois that I’ve met.

How long did it take to make the film?

About four months. It was a lot of work, but it was definitely worth it. And for someone who has worked within almost every aspect of HIV programming and policy, it was an enlightening experience. I was able to share the film with a lot of the young people who made contributions as well as many who did not, some of whom were also HIV positive. They gave me excellent feedback and were really proud of the final product.

You interviewed young people from the United States and South Africa, in what ways were their experiences similar and different?

What I noticed is that these young people’s environments were often different—as is the case when you compare the kids in Chicago versus the kids in the southern tip of rural Illinois—their lives, issues and circumstances are very different. But, at the end of the day, they were still challenged with the same core issues around HIV as it related to stigma and the rejection that often came with them sharing with someone they were HIV positive. As it relates to gender, though, I didn’t really find much difference. I went in thinking that the boys and young men would be less accepting [of being interviewed], but that wasn’t my experience. They were receptive to the interview process; they really wanted to get their points across and to share, not only things that they experienced, but also the experiences of their families. I would say, overall, those men were all very protective of their family members. I think the main reason they were forthcoming was because they wanted to make a contribution to dispelling some of the myths and the stigma so life would be better for their families. But then on the other side, a lot of youth didn’t want to participate because they felt like their families were not ready for the attention that would come from their being in a film and disclosing their HIV status.

Did you notice anything that was more common among girls than among boys or vice versa?

If I had to pick something, I would say that many of the HIV-positive girls I spoke to who aren’t in the documentary told stories about having relationships with older men. They said they were seeking father figures and had never identified with a positive older male who was older in their family, so they began to form relationships with men who were much older than them who were more financial providers to them. Unfortunately, a lot of times, these men were very manipulative.

Did these teens have a good understanding of HIV and how it’s transmitted?

The ones who were HIV positive were very knowledgeable, but the ones who weren’t were not as well-informed about the virus. When I was part of a training—I trained 500 youth throughout the state to be peer educators—what I found is that even youth who heard culturally appropriate messages and received information and education since kindergarten, they weren’t really knowledgeable about the modes of transmission, the bodily fluids and the routes of entry, which was very surprising.

What else did you learn from the young people you interviewed?

They were very creative with their ideas about ways to address stigma. What I have been doing and would like to have others begin to do more is to work with our young people to get information and ideas and have them assume leadership positions in terms of HIV prevention. Young people are such a creative group, and they know their peers. They don’t want to approach HIV from the traditional education model. They want to be more creative. They want to do more in terms of technology and social media, creative expressions or poetry, acting, song and rap. I believe that if we empower our youth to do more, in terms of addressing this HIV epidemic, that we would go a lot further, not only in terms of stopping the spread of HIV, but reducing stigma.

How is this documentary being used now?

We’ve been able to do several things very successfully. We’ve been able to partner with a lot of non-traditional organizations to show the documentary in venues where we’ve been able to capture not only young people, but parents and grandparents. That’s allowed us to have sessions where family members are all there, so it’s not like we’re just talking to the children. When I say non-traditional partners, we’re partnering with motorcycle clubs, social clubs, senior citizens groups, parent-teacher associations, civic organizations, black Greek sororities and fraternities, and then we also make sure that we have partnerships with local AIDS service organizations [ASOs]. That’s been a way to introduce ASOs and the people who work there to communities that may have shied away from working with these organizations. We also recently developed a facilitator’s guide. It addresses key issues that are discussed in the documentary. That guide has a number of sections that include defining stigma and showing its power, issues that are specific to rural communities, issues around incarceration, and leadership development. Our goal is to expand our base. We’ve really been working a lot in the state of Illinois, and we’re partnering with other states as well as national organizations.

(To see A Mirror to the Heart, click here.)