When did you first realize that you were an African American?
I was raised with a strong sense of being African American. My mother, uncles and family were proud to be African Americans. It was never about hating another race -- it was about being proud of yours. My mother, who had a high school education, was always one to point out African-American accomplishments. Racism back then was very strong. She would always have us walk tall, and when we were talking to people, look them straight in the eye. When we were kids, she'd say, "Remember, you're Omi's child; you can do anything." (Omi was her first name.) When people would ask me, "Why do you think you can do that?" I would say, "Because I'm Omi's child." It gave me a lot of pride.
To what extent have you experienced racism in your life? How have you learned to deal with it?
Very much, especially when I was younger. My mother prepared us for it, and said, "Just expect it and know it's going to happen, but don't let it stop you."
In high school I had a white geography teacher. One day he said, "Do you know why African Americans have larger butts than white men?" And we all looked at him like, "What?" He said, "Because you came from the ape, and white people are more evolved, so the structure of the body is different in whites than in blacks." I just got up and walked right to the principal's office, and said, "We have a problem." Half the class had walked out into the hall. The teacher got suspended, because all the students were in an uproar, and people's parents were calling. He was trying to explain his way out of it. It was messy.
And I will never forget the summer when I was 19 years old. I was walking with a friend downtown, trying to get a job. A white policeman stopped us on a curb full of people and goes, "Hold it right there." My friend and I were looking around like, "Who is he talking to?" He said, "Nigger, you." It was like, "Did he just call me a nigger?" We looked at him and my friend and I stepped out into the street to stop traffic. I said, "I don't know what's going on, but please somebody witness this, because he's about to hurt us." He called "Officer in trouble." Police came from everywhere. They had us on the ground, in handcuffs, and thrown in the police van. We kept asking, "What did we do?" They never answered us. At the station, when they were booking us, I said, "Can somebody tell us, what did we do? Are we under arrest? We've been fingerprinted, what's going on?" They said, "You have the right to remain silent," and read us our rights. Finally they came up with "You fit the description of somebody."
When we were walking out of that precinct, a police car rolled up beside us, very slowly. I stopped and closed my eyes because I could feel myself getting angry, but my mother always said, "Don't fight 'em back." I said, "Can I help you?" And he said, "You're being smart." They got out of the car, and I pulled everything out of my pockets and leaned up against the car. He said, "So where you comin' from?" I said, "Jail." He said, "Are you being smart?" I gave him the paper and said, "Here it is." You can understand, at 19, what that was doing to my head.
Some racism is blatant -- some is subtle. But I was blessed by being in sports and martial arts, which put me around a lot of tolerant people. And my mother used to say, "You are as good as anyone."
What is the biggest challenge facing African Americans today in terms of HIV?
Part of it is still taking the stigma out of it. In some areas of the country, it is still access to medications. But overall it's battling the internalized oppression of African Americans. In this country we think racism, sexism, homophobia, and all the other "isms" have in some way disappeared, which is a lie. It's not an even playing field.
I know this from a personal experience. I was wearing my coat and scarf over my clerical collar, and I got on the elevator with a white woman. Her body language really changed -- she grabbed her purse a little closer. I could tell that she still didn't trust me. Here I am, with a degree in divinity and an honorary degree and all, and that attitude still follows me. Then I opened up my scarf and coat, and she spoke to me.
What HIV risk factors are of special concern to African Americans?
I don't think you can compartmentalize it like that. You have to give a person a reason to live. When I work with a group, I ask them, "What is your vision? Where do you want to be?" If people feel like, "I'm going to be dead soon, so why worry about using a condom?" or "Nobody wants to touch me," or "I'm ashamed of being HIV positive because I am a gay man or I've used drugs." If they don't have a healthy outlook on life in the beginning, HIV is just another part of the burden. I think HIV needs to be looked at as part of a person's whole life.
Are there any specific aspects of African American culture or identity that give you strength?
Being with family is really important. That extended black family structure helps. Religion plays an important part. But even as a minister, I have to say, the black church started a lot of judgmental attitudes toward people with HIV. In the beginning, the messages in churches were: "This is a sin, you're going to go to hell, you need to repent." Back then, my message was always, "Tell me, when did Jesus ever ask somebody, 'How did you get sick?'" He never did. It's a lot better now, because organizations like Balm in Gilead [an African-American AIDS organization promoting HIV awareness in faith-based communities worldwide] are working with churches to get them past the fear and homophobia. There are churches that have the attitude, "If you have AIDS you can come, but you are going to have to repent and confess that you are no longer a homosexual before you can have services here." What kind of message is that? The church has to own that they damaged people's self-esteem and say publicly, "We gotta let that go. We're sorry. We made a mistake." But some don't want to.
How do you address the HIV epidemic in your own church?
We do HIV testing right at church, and we put out information and condoms on the tables, but we do it in an age-appropriate way. When it's all adults, I talk very open and frank about it. Most HIV-positive people in my church feel comfortable enough to say it openly. People ask me if we have an AIDS ministry, and I usually say, "No. Just like we don't have a cancer or a lupus or a toenail-hang ministry -- we have a health ministry, and AIDS is part of that."
How have other church leaders reacted to your work?
Most have had a very good response to my work. In the '80s it was a struggle to get into churches. We used to call it "Going in the back door." We tried to get invited to the health ministry's health fair, or to talk to the women's auxiliary, or the pastor. Now many denominations have AIDS ministries. I just got a call to go up to Pennsylvania 'cause they want me to come and speak. It has changed a lot, but we still have some churches to wrestle with.
What is the biggest change you'd like to see in HIV treatment, prevention, or education care for African Americans?
We have to come up with more creative ways of getting information and life-training programs out there. The government has to be willing to put money back into HIV education, and it has to be divided into two categories: people who are newly infected and people who are long-term. I think their needs have been neglected. We have to give them a reason to live, give life-skills training, so they can go back to work. If you're on disability, home all day, you don't have any self-esteem. It's about lifting a person up.
What do you find particularly difficult as an AIDS advocate?
What's most frustrating for me today, as much information and advertisement as we have about HIV, people are still getting infected. Back in the '80s, we understood that people didn't have the information. But today, in 2006, when everyone knows about HIV and people are still getting infected, there's something wrong.
Part of it is the messages are still wrong. When AIDS started to be known as a chronic, manageable disease, it took the urgency out of the prevention message. People became more relaxed and thought, "Well, I can just take some pills, and I'll be okay." I keep reminding people, "This is not a club you're trying to join. People are still dying from this." You can ask any doctor how many people have a virus that is resistant to all the medications. All the doctors can do is watch the energy drain out of their patients because there are no other treatments for them.
How would you grade Bush's performance on fighting HIV?
Very poor. The urgency, in the government too, has gone down. This administration has done a really bad job of fighting the AIDS epidemic. When was the last time you heard this president say the word "HIV" or "AIDS?" There's no feeling from government officials that that there's a need to take action.
You hear them talk about AIDS in Africa. Yes, we should do something for Africa because we have a bad record there. Look at what we've taken out of Africa, and what we've given back. It's important to give aid to Africa, but also to concentrate efforts at home.
We suddenly found billions of dollars to fund the war in Iraq, but we couldn't find $1 billion to put into health care for Americans who need it. Once somebody asked me, "How would you find money for universal health care, where anybody can go to any hospital for free?" I said, "Easy, it would be like a yard sale -- for an aircraft carrier, a B2 bomber. We can raise some money real quick."
What are some of the main myths about HIV that you hear in your community?
We still have people who don't know exactly how you catch HIV. Somebody just told me he went to a family reunion, and he realized they were giving him plastic plates and forks. At first he was offended, but then he took a moment to educate. Actually, it was his mother who went up to them and said, "Listen, if you could catch HIV from using the same dishes, I would have been sick a long time ago. Stop this madness."
Many communities still have this fear because the images in their heads are of an ill person dying with AIDS, with sores all over them, hair falling out. But today, you can't tell who is or isn't HIV positive by looking at them.
But the biggest myth is that there's a cure. Part of it is that the drugs are good -- part of it is that people aren't dying the way they used to. When Magic Johnson -- or his wife -- made the statement that he was "cured," people misinterpreted it. It took a long time for people to realize it wasn't literally true, even though he's come back in the media again and again to say that what he meant was that he was on HIV medication and it had reduced the amount of virus in his blood to undetectable. A lot of people grabbed onto that scientific information and spun it into a belief that there was a cure -- and that if you have the right money, there's a cure out there.
What are your hopes for the next generation of African Americans as they face the risks of HIV?
One, that we become educated enough to truly bring this epidemic to a halt. We have all the information so that the next generation should be clear and free. That's the hope; that's dreaming.
The reality is, as long as people don't have self-worth, they're not going to look after themselves and each other. The great divide in this country now, I would say, is not so much race, as it is class. Look at New Orleans after Hurricane Katrina. Look at Washington, D.C. The Bush administration is creating more divide than ever between the haves and have-nots. If I'm trying to figure out how to pay the rent, how to eat, how to get a promotion, using a condom doesn't come high on the list.
Is the state of HIV treatment any better than that of HIV prevention?
In the early days it was poor. Now, because of programs in major cities, like Washington D.C., the treatment is good -- there's been a lot of advocacy work to make sure it's here. But in rural areas, you still have a problem. I met a nurse who works in rural Pennsylvania who told me, "I drive five miles to go see this one, three miles to see that one, and 10 miles to that one." I said, "Why don't you just have a central place?" She said, "You need to understand: Here, everybody knows everybody, and everybody's scared to say it." So there's still stigma. In rural areas they're fighting to get funding for care and services, because the way they need to do things is very different -- it doesn't fit the urban cookie-cutter mold.
What has been your experience with HIV treatment?
I've been hospitalized three times. In the beginning, I thought that my good treatment was standard. Finally somebody said, "Rainey, no. It's because of who you are. When your name showed up, there were so many people hand-walking your files through. That's how you got through so fast." And I said, "Are you sure?" They said, "We're positive."
As far as the drugs themselves, I have been pretty blessed. There have been a couple I could not deal with, which caused diarrhea or rashes. I take a holistic approach to HIV. My doctors know that I will come off meds when I need to. Two years ago, I just said, "Nope." I started back at the end of last year.
Do you have a particular health regimen that helps you stay well?
Yes, it's important. I take the stress out of my life. I joke, "Everything I do has a T-cell value. If the meter reads more than five T-cells, I can't do it -- it's too big a sacrifice." I keep a sense of humor about this. I eat right, exercise. I don't smoke; I drink occasionally, usually a glass of wine.
How did you choose your doctor?
I interviewed him. I started getting referrals several years ago, when I needed a new doctor. When I choose a doctor, I want to know if we're on the same page because I use different methods -- acupuncture, massage, herbs and vitamins. I want them to understand these too. My doctor and I have a very open communication. I tell him everything I'm doing, he tells me why he's doing what he's doing, and we juggle it out. Everything comes down to me making the final decision. He told me, "If all my people were as conscious about this as you, I wouldn't have any problems."
I believe you have to be proactive. It's your health. One of the things HIV has done is changed the doctor-patient relationship from "I'm the doctor, I'm going to tell you what to do" to people asking, "Why are we doing that?"
Is your doctor African American?
Do you feel African-American doctors understand African-American patients better?
Not necessarily. Sometimes it makes you feel more comfortable to relate to another African American who's familiar with things in the community. But I had a doctor 10 years ago who was white and Jewish, and we had a great time, laughed and joked. He took a very holistic approach to things -- he wanted to know who you were, and took the time to talk to you.
Do you participate in an AIDS organization? Has it been helpful in improving your health?
I founded Us Helping Us in 1985. It's still one of the largest AIDS organizations in Washington, D.C. I don't do particular work with them at this time. I go in for special occasions. I help different organizations when they call me, and I work through my church.