Here at the TJMS it’s Take Your Loved-One to the Doctor season and June 27th was National HIV Testing Day. When it comes to health and family we all have a story. Here’s my story about HIV and my family.
I was introduced to HIV and AIDS as a teenager in New Haven, Connecticut. I’d seen it run rampant in my community. In the ’80s, when per capita, we had the highest HIV/AIDS rate, with numbers greater than New York because it was a small city with so many people HIV positive due to crack cocaine. In my community, the African-American community, HIV/AIDS was something that was, unfortunately, quite normal, because crack cocaine and IV drug use was so big in New Haven.
When you think of Connecticut, you often think of wealth, but there is also extreme poverty and lack of jobs.
It literally hit home for me when I was in the 10th grade. I remember being called into the kitchen by my parents, who had this on-again-off-again tumultuous relationship.
This was when I found out that my father was HIV positive.
My mother found out after he had gotten his diagnosis and after they had been together. He then decided that he would tell her. After he exposed her to the virus, he then said, “Oh, by the way … I’m HIV positive.
When they announced it to me, my mom did not know her status. I just remember standing in the kitchen with tears running down my face. But it wasn’t even because I was sad. I was angry and devastated because my father hadn’t been that stable force in my life; my mother was. Exposing her to the virus was so incredibly selfish.
Mind you, I’m an only child. So, regardless of all of the craziness, my mother always had my back. And the fact that he could potentially steal the only stability that I really had going for me was a major devastation. I was so angry, hurt – and quite frankly, less interested in his health at that time. He ultimately ended up living for about 10 – 11 years, and, thankfully, we were able to repair our relationship.
My mother did test negative, and I went on to become an HIV/AIDS peer counselor as a high school student. I went on to college, and in my junior year, I came back home to run for the Miss Black Connecticut pageant.
The night before the pageant, my best friend’s mother died. It turns out that she had contracted the virus from her husband, who was a drug user. She didn’t know he was HIV positive when he died, and she was in denial the entire time that she was sick. She became a recluse. My best friend was able to only disclose to me her mother’s status because she knew that I understood the battle with HIV/AIDS and the family. Her mother died never talking about it. Her husband may not have even known himself, because that was the ’80s.
I can remember sitting in my girlfriend’s living room, surrounded by her family, laughing, crying and comforting. At the end of the night, I remember saying, “I’m going to go on and do this pageant, and I am going to do this for Susie. I am going to win it for her and my father, Ronnie.” And I did win.
The next year, I went on to become Miss Black USA in 1994. Again, I took my platform nationwide, going to historically black colleges talking about HIV/AIDS. It was really my mission. I also became a spokesperson for the American Red Cross.
Another revelation came to be when I was at college at Howard University. I was a theater major and interned in one of the dean’s offices in the Fine Arts Department.
One day while I was working there, this guy came in from the street. He was a former student and clearly was in his last stages of AIDS. It was almost like he came back to the school to get closure because he just stopped by to see some of his old professors, teachers and administrative staff. He was giving people hugs and kisses.
As soon as he left, they took out the Lysol cans and started spraying and disinfecting everything.
I just stood there in disbelief. I followed this guy a short distance as he left the office. I saw him as he just walked and waved at people on the campus – just waving at everyone. People were looking at him strangely, like “Who are you? What’s wrong with you?” They were giving him that look that we can give people. My heart just dropped as I stood on the steps of the Fine Arts Department. I watched him from a distance with tears coming down my face. I thought at the moment, My God, that could be my brother, my friend or my cousin. And then it hit me – that could be my father. I realized that I had an epiphany.
That night, I went home and called my dad, and we began to repair our relationship. All of the resentment, anger and hurt that I had was replaced by the love that we had for each other.
I learned so many things from my personal experiences. I realize that denial, like in my friend’s mother, exists in our community for many reasons. There is a stigma attached to HIV because it is one of the only viruses that are associated with behavior – even though, in so many cases, especially with black women, it’s often not negative behavior of our own, but because we have unknowingly been exposed by our partners.
One of the ways that the disease is contracted is sexually. As a people, dealing with sex and sexual issues is always a difficult issue for us. We don’t talk about it. We do it. Everybody does it. But we don’t want to talk about it.
When you look at our leadership, whether it is from a traditional civil rights, political or religious perspective – nobody wants to talk about it. They want to talk about what you shouldn’t do, but too often, they don’t necessarily meet people where they are.
When you look at the messages that are created and crafted, it’s not specific and germane to the African-American community, and so the way that we would address HIV/AIDS early on was with statistics. When you describe what is going on in numbers, statistically and factually, it is alarming. AIDS is a leading killer for black women ages 25-44; African-American young people ages 13 to 24 account for almost 60 percent of all HIV cases among young people, and on average, young Americans 13 to 24 are contracting HIV at the rate of two per hour. Still, we as a people do not respond to numbers and figures.
Instead, we respond more to feelings and faces. Just like me. I am not infected, but I am affected.
What I’ve done in some of my advocacy efforts is to begin conversations. I may be at a wonderful party, and I just start talking about it because I believe that’s what we must do is normalize our dealing with HIV/AIDS in our community.
When you find out that someone is HIV positive, don’t demonize them. From the ’80s on, people were isolated and stigmatized. So, many people died alone.
You don’t have to agree with someone’s choices in life to love them. In fact, you are able to reach more people if they know that they are not being judged. People are fearful of the reaction, so they don’t tell – like if we don’t talk about it, then it’s not real.
By the way, no one actually dies from AIDS; it’s the complications of the disease that result from their immune system being compromised. One of the major killers is depression and loneliness – people give up. People can live for a long time when they have hope.
As African-Americans, we understand what it means to be discriminated against, ostracized and marginalized. Why, in God’s name, would we do this to other people? We can’t afford to stigmatize and ostracize because we need every useful, viable, valuable person in our community. When there are those who are down, we need to have systems in place to raise them up because we need each other.
My motto is “Your circumstances do not determine your destiny, but your choices do.” Everyday life is about choice, and we don’t always make the right choices. Yet, we have the gift of continuing to live and grow – and make different choices.
Part of the process of moving forward, as I did with my father’s death, was to be open and straightforward with him before it was too late. We were both at peace when he died. There was closure, and I was a part of the process in helping him to live out every moment that he had. Everybody wants to be loved unconditionally.
Speaking of unconditional love, although my father really did a disservice to my mother by abusing her physically, emotionally and potentially fatally. My mother was his caretaker in the end. They had not been together for years and yet she went to see him everyday. When he passed away, my mother was there with him.
Still today, I am amazed at her capacity to love. When I was younger, I resented it. I felt that she was foolish, and I was angry about it. But life teaches you some things. I’m still learning.
One thing I’ve learned about health is we need to ask questions — of ourselves, our partners and our doctors. Ignorance and silence equal death. When it comes to HIV and AIDS in the black community, we need a revolution. And it starts with you and I.
Yes, HIV hit my home, but it did not ruin my life. Instead, it helped to shape my life. Don’t even let it come to your doorstep. Talk about it and Get Tested.
Deya “Direct” Smith, is a producer on the Tom Joyner Morning Show and host of Girlfriend FM and Beyond the Studio celebrity interviews on BlackAmericaWeb.com. She is also a motivational speaker, actress and social commentator. She can be reached at DeyaDirect@aol.com.