Who do you focus on in your HIV/AIDS advocacy work?
African-American youth, with a particular focus on at-risk youth. The C/D students who are below the level in every area.
What are the biggest obstacles you encounter and where do you find the most support?
The biggest obstacle is that people do not want to fund programs for youth right now. Unless they're gay youth. Urban African-American youth are particularly underfunded. The economy is bad across the board, so when you start talking about youth, it's like, "Well, they've just gotta do like everybody else."
The greatest support we get is from schools, parents and community groups, and the young people themselves. But not the powers-that-be. But this is not an indictment against all funders or government agencies -- the CDC [U.S. Centers for Disease Control and Prevention] has been very proactive in addressing these programs at various times.
What is the most critical AIDS issue facing the African-American community?
Right now, particularly with adolescents and young women, there's still a sense of denial. Young people have a sense of invincibility, and with African-American women, we're still not taking a responsibility for self. We're still caretakers, still the last one on the list to be cared for. So we're passing that philosophy down to our young women, who are making some of the same decisions about their sexual health that we have made, which is, "It'll go away," or "I'll take care of this one day, everybody else comes ahead."
Where do you think the most progress is being made in combating the epidemic in the black community?
In the gay community. The gay community has learned the lesson of HIV/AIDS. They've done a great job advocating for themselves and others, as well as passing on information in different settings that we just haven't done. And I think they're more realistic about sexual-health issues. I think they're more upfront. But I think the gap for the gay community, even still, is with the young people, who are not necessarily getting the information for the same reasons that heterosexual youth are not getting it.
Where is the least progress being made?
Heterosexual men of all ages, beyond a shadow of a doubt. When AIDS came out, it was labeled as a "gay" disease, and we still have the stigma. The AIDS community is very much geared toward the hot topic, because that's what gets funded. Women get funded, children get funded, gay men get funded, but heterosexual males, that's just a group that people go, "Oh well, they'll just fall in the cracks somewhere." Even if we have to put them under the gay group, just to get them services.
Isn't the down low a hot topic now?
See, now that hurt us. Every African American man is not on the down low or gay, and that is the impression, in the last few years anyway. That has been the perception, so a straight man is just not going to come get services from them. He's not even going to identify with HIV because of what we've said about his activities, because there are straight men who are afraid of getting labeled as gay.
So you think too much has been made of the down low?
Oh, my God, yes. I'm not saying it shouldn't have been exposed, but let's not lump everyone together, because when I go into the community, the young men -- particularly under 35 -- just shut down when you say down low.
What should be done to reach these heterosexual men?
Prevention and education designed by heterosexual men, with their input, that uses their language and people that look like them, and programs that say it's OK to be straight. We're in a climate where to be perceived as straight and HIV positive is not too cool.
What are the top myths about HIV that you encounter?
Myths are not so much the problem anymore. I personally believe that everybody's educated about HIV. They know how to get it and how not to get it.
Denial is a problem. Folks honestly still are in that place that "It just won't happen to me." Or "my husband is not going to sleep with a woman other than me." Or "There's no such thing as a crack whore as it relates to my life, because a person in my life would not do something like that." Or "the down-low male is real, and that wouldn't happen to me because I'm smarter, and he looks clean."
And then there's the issue that people with HIV are living longer, so there's not any immediate threat -- it's kind of become "an HIV that you can live with." That's a great advantage, but in terms of prevention, in 1989 we could bring some people with HIV out and they looked sick and "Oh, my God! I don't want that to happen to me." Now people with HIV look healthier, they're having long-term problems, like disability, mortgages, bad kids -- the same problems people who are not infected with HIV have. The danger is that people aren't really talking about the side effects of the medication, the fact that they can suddenly stop working, that people are still dying, that this is still something that you don't want to have.
What strategies have you found to address the denial and the complacency?
Well, what we do is bring in the medicine, because we're dealing with young people and women. First we show them how many pills a person with HIV in various stages, maybe, and with different types of diseases would be taking; what "a day in the life" looks like. Because with young people, the information has to be something you can see, feel, taste and touch. Then they can relate to it -- when they're actually holding 60 pills -- and I'm exaggerating -- and looking at a medical chart with cancer, emphysema, genital herpes, whatever a case might be.
We use a lot of case studies of real people in our support groups. The women's support group has been very helpful, anonymously, by giving us their personal stories that we're able to turn into a presentation: "Winona -- this is her life. She was infected in this particular situation, and this is where she is now, and these are the prospects for her life and her health, good and bad." You put the young people beside that model and show how making different decisions can have very serious, long-term consequences. We even have them act out the decision to have sex with the person who was infected, and we talk about the fact that this person didn't use protection or didn't disclose their HIV status or maybe didn't even know their status. What it's like from infection to HIV diagnosis. We ask them to get inside that head.
How is the HIV epidemic different in the black community than other communities?
The main differences from the white community are resources and political power. Again, the white gay community started the movement, and they did a fantastic job of bringing the public's attention to the disease. But there's just more resources, better health care, earlier testing and treatment. They have the mechanisms in place to be able to survive longer, and with a better quality of life than the average African American with HIV.
There are a lot of similarities between the black and Latino communities -- the culture, the family. We both face a lot of the same problems, and our statistics are about the same. But I also think, too, because Latinos are the "emerging" minority affected by AIDS, a lot of attention is being paid and a lot of money is being given to them. That's not an indictment, but I think that the resources for those communities are much more available than for the African- American community.
Do you think activism is an effective way to fight the epidemic?
Yes, activism and advocacy work, but there is not an immediate response sometimes, and it is a way of life. You're always advocating -- it becomes a thing that you, say, breathe and eat.
But there are so many other issues now. We are fighting the economy here in Philadelphia, we're talking about gas prices, homicide rates -- our schools are in trouble. It's very difficult to go into a school that's just had a homicide and say, "Look, I want to come in and talk about HIV."
The HIV community is very fragmented. I'm fighting for adolescent African-American dollars. The white gay community is fighting for white gay dollars. The black gay community is fighting for black gay dollars. The women ... and you know, the deals get cut. Let's get real. This is the real world. But if we could ever come together, which we did in the early days, and cut the deals ourselves so that everybody is able to supply the needs of their community, I think that would be it.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
That we won't learn from our past. That we won't start to take responsibility for ourselves. Because, despite all the medical advances, HIV is not tuberculosis yet, and we think it is. And if we continue at this rate, and HIV keeps adapting itself to everything that we try to throw at it, we're going to get a generation of young people who will affect our ability to produce healthy children, and to just survive.
Can you recommend one action that we all should take to end the epidemic?
Personal responsibility. That means taking care of Linda, myself. Taking this message to my mother, who is a senior and is also affected by HIV, as well as to my son and to my granddaughter. If everybody would touch the people closest to them with that message, and make it real and a part of daily living -- like you don't eat pork. There are people who don't eat pork -- I'm not one of them -- but their children don't eat pork, do you get what I mean? There are people who go to church. The whole family goes to church and is exposed to the message, "This is what we should do." There are people who, if you don't go to Princeton, you don't go to school. But it's instilled in that family. If we could take HIV and make it part of that type of message within our own inner circles, each person would educate another, and that would be a generation of families and people who would not be infected.