When did you first realize that you were African American?
My mother and father were from the South, where racism was very strong. So they always made sure to let me know I was a beautiful black girl. But I experienced racism very early. I was 9 or 10 when my aunt came from California to visit. She was white, with blond hair and blue eyes and she took me shopping in Franklin and Simon -- an expensive store. When we were walking around, the assistant girl took my aunt aside and said, "You better watch out that she" -- meaning me -- "doesn't steal your pocketbook." My aunt said, "What? She's my niece, and I'm buying her a dress!"
When I was 12, I went to a city pool near the projects. In the water there was a big piece of glass and I cut my foot -- you could see the bone and all. It turned the water red. This Italian matron didn't want to come over. She said, "I don't wanna get that black blood all over me."
How have you learned to deal with the racism?
In the past, my dad warned me that everyone would not treat me the same as he did, and that was because of our dark complexion. Today, art has helped me face racism and get over it. I feel appreciated for it. I'm comfortable in my skin. I love being black. I lived at Watershead, Maine for nine days. I was very comfortable being the only black person in that area.
What do you think is the biggest challenge facing African Americans today in terms of HIV?
Accepting that African Americans have the highest risk. If everyone's aware of the magnitude of HIV -- not just on World AIDS Day, but every day or every week. To have it on a TV show. say -- people would begin to realize it's that big and really start to listen.
What HIV risk factors are of special concern to African Americans?
Poverty, joblessness, poor housing. That all impacts on why the rate is so high in African Americans.
Are there any specific aspects of African-American culture or identity that give you strength as you learn to live with HIV?
The power and glory of Jesus Christ. Religion has a strong root in the black community. I know God's hand has been on me -- it had to be for all of what I've lived through. It's His holy spirit that lives in me.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
I think there need to be many more Spiritual Day programs. We need to meet people where they're at, and take them the message of something bigger than them. There is hope. The spirit of God can help people deal and live a joyous live, even with HIV.
Do you think the Bush administration is doing enough for the black epidemic?
Bush hasn't done anything that's noticeable to me. What happened to all those people devastated by Katrina, whose diagnoses and notes were all misplaced in the hurricane? You don't hear what's been done for them, or what has really been done for the rest of us.
What are some of the main myths about HIV that you hear in your community?
In every community, people think it can't happen to them. They think it only happens to prostitutes and drug addicts, not to college students, housewives, and school kids, [or] even to babies who are born with it, and had no choice. If you have sex or had sex, it can happen. Everyone needs to be tested.
The CDC [U.S. Centers for Disease Control] should have a revival to monitor HIV and put out the right figures on who is infected.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
My hope is to go back to the old time -- that we stay celibate until we get married. If we go on like we are, things will get out of control. Even in college campuses, HIV is everywhere. I hope young people can learn to listen and listen to learn, and apply information to their lives.
What has been your experience with HIV treatment?
I've been pretty blessed because I've never taken meds to this day. I've had all sorts of other illnesses -- in 1996 I was diagnosed with Hep A, B, C, and seven thyroid tumors. Blood vessels burst in my neck when I was awake, and doctors operated on me without any anesthetic to save my life.
How did you choose your doctor?
I was guided by God to my doctor. In 1995, when I was first diagnosed, I was on a bus going to a hospital way out of town. I was passing the Brooklyn Medical Plaza and just felt I needed to get off and see it. There I found an HIV-specialist doctor. I know I'm getting the best care from him, which I know others are not as fortunate to have. If I need any treatment, I'm sent to the best facilities.
Is your doctor an African American?
Yes, my doctor is African American, but I did not choose him, as I said. When I got off that bus, I didn't know who I was gonna find. I thank God it was Dr. Carey English at Brooklyn Plaza.
What kind of relationship do you have with your doctor?
We have a good relationship -- we talk and he listens to what I say. He keeps me well-informed. We really have a friendship. I thought I was special at first, but then I found out he's like that with all his patients. We are like equal partners, where he tells me everything I need to know medically, but I make the final decisions. He has both compassion and great knowledge of HIV.
Do you have a particular health regimen that helps you stay well?
The word of God is truly my regimen. I don't drink or smoke. I enjoy living my life. And I enjoy helping and serving others. At Christmas, I testified in Rivington House [a long-term care facility for people with AIDS], and they were so happy I came, suffering from the same things as they are, to talk and share experiences. I go there to give people comfort, but they don't know: They comfort me. I went with my AIDS ministry. We gave out gifts and love and hope. Our AIDS ministry meets every Tuesday. We do extensive outreach.
Do you participate in an AIDS service organization? In what way?
After my HIV diagnosis -- as well as my AIDS diagnosis, which came a year later when my CD4 count briefly dropped below 200 -- I became an activist in my community. It's more something that happened than something I strived to do. In 1998 I began working with Robert Morrison, an art therapist at the Jewish Board of Family and Children's Services [a social-service organization that provides AIDS case management]. It was through the Jewish Board that I first began to work in clay and paint, under Morrison's guidance. I already had the wings -- a natural talent for working in clay and paint. It was Morrison who helped me to fly.
What does activism mean to you?
I have coordinated the AIDS ministry in my church for the past three years. I will testify about HIV -- in Borough Hall, Central Park, in shopping areas, trains, to anyone who'll listen. I say we're bringing this out of the dark and into the light. Being open removes the shame and the guilt. We have HIV testing in my church. When we go on coat drives to give out coats, I talk to people about HIV. I say, "If it takes one person to infect a whole lot of other people, it also takes one person to stop it from spreading." Also, "From the Shooting Gallery to the Art Gallery," does outreach in communities all around New York.