Marvelyn Brown was 19 years old when she contracted HIV in 2003; Jonathan Perry was 24 when he was diagnosed in 2001. Since then, they each have become bold advocates of HIV education, especially among African-American youths. Brown received an Emmy in 2007 for her educational public-service announcement for MTV's 'Think HIV' campaign. And both she and Perry have made memorable appearances on The Oprah Winfrey Show.
For National Black HIV/AIDS Awareness Day, coming up on February 7, HIV Plus interviewed the two leaders, who spend a considerable part of their time traversing the nation to talk at public engagements about being HIV-positive in order to help others understand the impact that the virus is having on the black community-and how easy it is to be lulled into a false sense of complacency about how pervasive the virus is.
Although the two don't always agree on how to deliver messages about the virus, they find common ground in recognizing the severity of the facts: Each year African-Americans represent about half of all new HIV cases in the United States, and more than half of the cases are among young adults ages 13 to 24. What makes these numbers even more staggering is the fact that black Americans are only 13% of the national population.
Why is the epidemic growing so fast among African-Americans, and how did it get so big in the first place?
Brown: People are just unaware of truly what HIV is--especially me coming from the Bible Belt, constantly hearing about abstinence and bad endings of sex education, along with moms saying, 'Just don't bring a baby in this house.' It contributes to a lot of young women and men becoming positive, because you're thinking the worst thing that can happen from sex is pregnancy--
Perry: And it's not, baby!
Brown: Or an STD that goes away with a shot or a pill. The information is not there for African-Americans.
What is the information that's not there?
Brown: That becoming HIV-positive can happen to you.
Perry: Everybody feels like Superman. One of my friends was telling me that when she got HIV, she said, 'Lord, why me?' All I can think is, Why not you! Don't sit back and ask God to save you when you're not willing or even interested in helping yourself.
Brown: I would agree with that. I wasn't necessarily good in English, but I use math in my everyday life. It's a process of elimination. I put it on intravenous drug users, prostitutes, gay men. Therefore, HIV didn't affect me. The most shocking part for me finding out that I was HIV-positive was that the H stood for human.
Perry: When AIDS was first discovered, what was it called? GRID: gay-related immune deficiency. Now, it's not only gay-related, it's black-related. It's that H in front of HIV. That's the part that people miss: It's an immune-deficiency virus that affects humans.
Brown: I didn't even know it was an acronym! I thought it was pronounced 'hiv,' like 'give.' I don't even care that I'm sounding dumb--because I know it's not just me! If it wasn't this way, would this many people still be infected with HIV each and every day? Would this many people still be dying?
Among African-Americans, what are the contributing factors to this denial--or this lack of information? Are we talking about homophobia? Religious beliefs?
Brown: Come on now! We know what religion does. You're talking to somebody from the South.
Perry: I was diagnosed in 2001, and my grandmother was the last family member I told. It wasn't until two days after the Oprah episode aired--Friday, April 16, 2004--when I decided to call my grandmother. She was like, 'Baby, I just want you to know this one thing: I love you. I thank God for you, and I'm proud of you. You know what? We're going to get through this.' My grandmother, for me, is like the bastion of unconditional love, acceptance, and support--except with that issue, I thought.
Because of her religious beliefs?
Perry: You go to churches, and you always hear people: 'Pray for me. I've got cancer.' But you don't ever hear anybody going into church saying, 'Pray for me. I have AIDS.' Because with that comes the judgment; with that comes the condemnation.
Brown: It's almost OK to go in the church and talk about pregnancy. But it's like with the HIV issue: 'You deserved it.' And I know, for me, I would say the homophobic part played a lot. It had a lot to do with the 'down low.' I found out I was HIV-positive July 17, 2003. This is when this whole DL thing first started blowing up. A lot of people in my community were like, 'Well, why did you sleep with the gay men?' 'Why did you sleep with the bisexual men?' The man who gave me HIV wasn't either; he was a straight man. How he got it, I don't know. It could have been from anal sex with a woman.
Perry: Men do spread this disease more than women.
Brown: They're all taking risks.
Perry: They're all taking risks, but I can tell you I was in a relationship with a guy who hated to use condoms when I first found out about my status. He was negative, he knew I was positive--and we rolled like that! And that's how we did it, because I wanted to satisfy him and I wanted to satisfy myself. At that point I was so opposed to condom use, especially after my experience in getting infected after having one break. We talked to the doctor about how risky it was. We did all manner of stuff. He got tested at the end of the relationship, got tested a year after the relationship, a year and a half after the relationship--and he's still negative. People aren't getting all sides of the story. Yes, you can get HIV from one sexual encounter. But there's people who go through life never using a condom, having sex with people who are HIV-positive, constantly being exposed but never contracting it. And that's a truth that no one wants to talk about.
Brown: For what! What's the point of talking about that, to say that it's OK? Remember my process of elimination? You tell me that I can have sex unprotected and keep on getting exposed to HIV--but I don't have to get it? Which side am I going to take? I'm going to think that I can keep on having sex without a condom! But I still have a chance of becoming infected, whether it's a 2% chance or a 100% chance. But if you tell me only something that I want to hear, everything else I hear is going to run because I didn't want to hear it.
Perry: Do you honestly think that you should tell people only one side of the story?
Brown: I'm not saying that! Sometimes you need to know both sides. Tell me about HIV, tell me about life after HIV--but not when it comes to condom use and things that are going to make a difference!
People are debating, as you guys are right now, about strategies that will and will not work, particularly for many African-Americans. Obviously, what's being done isn't working. What are some new messages that you think might work? You're advocating, Jonathan, that maybe what we should be doing is giving people all the facts.
Perry: Exactly. There is truth out there, but you've got to understand that with that truth comes consequences. It's like preaching an abstinence-only message.
Brown: I think they're totally different! Every time I get ready to start a relationship with a man, the issue comes up that it's easier for a man to give it to a woman than it is for a woman to give it to a man. Why should that matter? They're both risky!
Perry: You're telling them it's easier for a man to give it to a woman. You're giving them both sides of the story. You're not leaving out information, and that's all I'm saying.
Brown: But it would almost be like I'm brainwashing these men. Even if I don't tell them, I still know there's a risk for them, and I know the only reason some would continue to be with me is that they'd think they won't get it. I feel, let's talk about it. And then there's others--when you're dealing with black people--who think you just need to shut up about it!
Obviously you're coming from a different place than Jonathan is. Why do you believe when you're speaking to African-Americans that it's maybe not in their best interest to be told certain things?
Brown: You're talking to a person who was an athlete in school. I did just enough to get by to be able to participate. When you told me I could pass with a 'D,' do you think I worked for the 'A'? No, I didn't. Whatever is the easiest way, I'm looking for the shortcut just like every other black person. That's thinking as if I wasn't HIV-positive, though. My ways of thinking have completely changed, but I'm going back to that 19-year-old girl who did just enough to get by. That's what happens often in the African-American community.
Perry: There's a saying: 'Knowledge is power.' And there's Scripture in the Bible that says, 'In all your getting, get understanding.' That's why I say you provide people with all the information. HIV is just one issue under an umbrella of issues. There needs to be a digging deeper into the other issues that cause people to want to go out there and have sex without a condom with somebody they know is HIV-positive.
What are those issues? We could be talking about depression. We could be talking about drug use.
Perry: When we're sitting back and we're negotiating sex, what happens is, 'I want to do what feels best for me.'
Brown: Are you sure?
Perry: I said what feels best. I didn't say what is best.
Brown: I think that's from a man's standpoint. Let's talk about our black women, the ones who'll do anything for a man. I was vulnerable once upon a time. It feels the same to me with or without a condom. But he told me it made him happy to not wear a condom. I'm not thinking about myself, so let's have sex without the condom.
Perry: Whom do you blame for that in the end?
Brown: I blame myself! He got me. He played me!
Marvelyn, you were saying before that people assumed the man who infected you must have been gay or bisexual.
Brown: Like it is just impossible for a heterosexual man who's not a drug user to become infected with HIV. I've talked to people in the HIV field who still feel like it is just not possible.
Perry: Do they feel like it's not possible, or do they feel like it's so improbable that it seems impossible? How probable is it for a traditionally heterosexual man who doesn't use drugs?
Brown: When you say 'traditionally,' you mean vaginal sex?
Perry: I say 'traditionally' because there are gay people who think they're straight.
Brown: They don't see that a heterosexual man can have anal sex with a woman and get it just as easy as he could from a man or a needle. No one thinks like that!
Much of the stigma stems from homophobia. But what about drug use? Is there less stigma attached to having gotten it from a needle?
Brown: It's not always certain if people actually get it from drug use or from having sex. But I do
think that the stigma is less. People look at drug use as a problem, sex as a choice.
Many people believe sexual orientation is a choice. If the levels of stigma are about disease versus choice, then the stigma only intensifies when we're talking about religious views and sexual orientation.
Perry: I think in all the years that I've been speaking publicly, I've only spoken in one church.
Brown: I've spoken in churches.
Perry: They're less responsive to what I have to say because I'm an openly gay man who has HIV.
Brown: I can see that. They already don't want to let me in because I'm positive--which means I had sex. But damn: He's positive, he had sex, and he's gay! [Laughter erupts]
Perry: We've had a white gay face for HIV, we've had a black female face for HIV, we've had a black heterosexual face for HIV, but we don't have a black gay face for HIV in our country. When I think about that and how people don't want to hear anything, I have to say--because I'm gay--honestly, that hurts sometimes. It doesn't matter how the hell you got HIV, baby. We're in the same boat now!
How do we get past stigma? How do we start to tear that down in the African-American community?
Brown: You make it relate. I had a young black girl come up to me and say, 'You scared the hell out of me, but I get you.' And she told me, 'At first I stigmatized the disease. But knowing that you got it just from sex, and my mama had me from sex--I have sex--how could I stigmatize you?'
Perry: The Bible says that love covers a multitude of sins. That attitude is what's going to propel us from being 15 years behind in this fight to catching up. All I know is that dead folk don't sing in choirs, dead folk don't play organs, and dead folk don't tithe. The church is ready, but you've got people who are so religiously minded, so heavenly minded, that they become no earthly good.
How in your travels are you both hearing people talk about HIV? Are they becoming more educated?
Brown: When you walk into the room, there's ignorance there. By the time you leave, you clear it all up. We both just got back from South Africa, but on very different trips. Even in South Africa, where 50% of the country is infected, I had someone raise a hand and was like, 'So how does it feel that you'll never have sex again?' I said, 'You do a lot of assuming, don't you?'
Perry: Baby, my life isn't really very different than it was before. The only big difference is I have to face ignorant people.
Brown: People always ask me, 'What is the worst thing--is it your medicines?' No! It's stigma and uneducated people! And it hurts me the most because I was just like them before I was infected--uneducated, not caring, didn't care to learn, put myself on a pedestal, HIV could not touch me.
Perry: One time I went somewhere and this girl, right after she'd heard me speak, said 'That's the boy with AIDS' and ran. It's going to a university, looking at the school newspaper, and it says, 'AIDS Boy Comes to Speak.'
Brown: My new thing is, 'AIDS is not an adjective; quit trying to make it be one.' Know me for my bad handbags that I carry. There's way more to me than HIV.
Perry: And, 'When you assume my story, then you wind up looking like a fool.'
Brown: HIV has taught me so much. It really has--responsibility, self-love, and self-respect. Like I said, when I lay down in that bed the night I was infected, I [trusted] that man to care about me, and that's where I messed up. I was lacking self-esteem. It made me grow up.
Are there any closing thoughts?
Brown: I always tell people to get tested, be responsible, and educate themselves.
Perry: Love yourself enough to know.