Photo courtesy of Gary Gale
Alora at the Ryan White National Youth Conference in February 2001, with Gadfrey and Natal (two speakers from South Africa) as well as her brother, Mo. Alora was a keynote speaker at the conference. The Ryan White National Youth Conference is the largest of its kind in the United States. Many young people living with HIV, like Alora, meet their counterparts from all over the country and the world at this conference. They often keep in touch through e-mail, letters and meetings along the HIV conference circuit.
Can you tell me a bit about your little brother? Have you and your brother both been open about being positive?
My brother's gone through different phases, as have I. He's gone from telling pretty much anyone, to saying, "Don't tell anyone without letting me know first or asking my permission."
We've been open about it since we were diagnosed. Family, friends, peers -- everyone knows. A lot of people know. I mean, I don't walk up to people and go, "Hi, my name is Alora, I have AIDS." But once I get them in sort of a comfort zone, I tell them. I do this once they know a little bit about me. I don't want to get too attached before I tell them. This way, if they don't like what they hear, they might walk away, and it won't be too hard if I'm not attached.
HIV is, and always will be, a large part of my life. At times I am more private about my status than others. It depends on my comfort level of my surroundings. I am public in Boulder; while I am living here it is easier to be public than private. I have trouble determining when and in what manner to disclose my status. In this situation it is infinitely easier to assume my HIV status is common knowledge.
Do you feel that because you're a woman you might get different reactions from people when you disclose your status than HIV-positive men do?
I think that the reactions people have can be very different, as well as the health care side. For example, a lot of the clinical trials are designed to be done on men. I'm 5'2". I'm not a very big person. But in clinical trials I get adult doses -- the same amount of, say, Sustiva that a 200-pound man would take. So I notice that kind of difference. In terms of perceptions, when I tell people that I am HIV positive, I think as a woman people assume I must have gotten it through sex. Even when I was in seventh grade I had people thinking that I got it through sex -- I doubt sex was even entering my mind at that point. If a guy had said that he was HIV positive in seventh grade, it probably wouldn't have been perceived the same way -- people might assume it was from hemophilia or something. I know some friends who got AIDS through blood transfusions. One of them, he's 21, often gets asked if he's gay. He's like, "I wasn't having sex way back then." I think it's interesting, the perceptions people have based on gender, or age, anything.
Photo courtesy of Gary Gale
Alora in 1990, at 4½ years old.
Have you had experiences where people you told had a negative reaction?
Of course. Especially when I was younger, when there wasn't any information out there -- or not as much of it anyways. When I speak to students about HIV/AIDS, I tell this story about a girl in grade school. Her name, ironically, was Destiny. She was a year older than me; I was in second grade so I was about seven. Whenever I'd go out onto the playground she'd call me "AIDS Girl" and tell everyone not to go near me. She said that if I sneezed, or coughed, or breathed, or even went near anybody, that they'd get AIDS and fall over and die. She made that year pretty much a living hell out on the playground.
One day [laughter] -- being the 7-year-old drama queen that I was -- I had a friend, Morgan, who I pulled aside and said, "Okay, I just can't take it anymore. Here's what we're going to do -- I'm going to pretend to sneeze on you, and you're going to wiggle around in the wood chips and die, okay?" And so Morgan and I carried out this little play, and Destiny went screaming to the playground attendant telling her that I had killed Morgan with my sneeze. So the playground attendant came over, and Morgan was standing up and she was fine. Eventually a teacher had to sit Destiny down and say, "Look, if she sneezes on you, or breathes on you, or gives you a hug or even kisses you, you're not going to get HIV. And when people do get HIV, they don't just fall over and die." That's what Destiny needed. There are always ignorant people. One of the reasons I speak publicly is because, you know, they say ignorance is bliss, but I believe the exact opposite. I'm more of a knowledge-is-power kind of person.
Have you always dealt with negative reactions like that in a humorous way?
I try to treat it with humor. If you can't laugh, what can you do? That's my philosophy. For every dark cloud there's a silver lining; you just have to find it. That's pretty much how I treat it. I, luckily, have not had too many negative experiences. I've lived in areas of the country that were pretty well-educated, and if they weren't, I would educate them. It was always interesting to watch the kids educating the parents.
Can you tell me a little more about the speaking that you do? When did you start doing that?
I began public speaking when I was about 14. I spoke to the eighth grade, and then the sixth grade. I was openly HIV positive at my school, so I could tell them a little more about my story and give them a better understanding. At that point they were only spending one eighth of one day on HIV in the health class. I thought that was absolutely ridiculous. Fifty percent of new infections occur in people ages 13 to 24, and they only spend an eighth of a day. Or you get the AIDS education in your junior or senior year of high school, which for a lot of people is just too late. So I decided to speak publicly to help provide more education. I go to schools, in classrooms and at school assemblies, youth groups, churches, conferences -- a little bit of everything. I share my story and do HIV 101, things like that. I had the opportunity to speak at the Ryan White Conference [the Ryan White National Youth Conference, which aims to further HIV prevention and education among youths] in 2000 and 2001.
I stopped [speaking publicly] for awhile due to burn out. I wanted a chance at a "typical" high school experience. After this break, I find myself re-energized and ready to take on the world!
Has that been a rewarding experience for you?
Immensely. Not only is it kind of a healing process, but the feedback I've gotten from people has been amazing. When people say that I've actually made a difference in their lives it means so much; it's hard to put into words. Some people have come up to me and said, "Oh, I've had an aunt or an uncle who died of AIDS and to hear you speak has meant a lot to me." Other people have come up and said, "I'm positive, and it was great to hear you speak because I can't speak for myself. I don't feel comfortable." So, it's extremely rewarding.
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