Fighting HIV
ignorance

One night not too long ago, I was surfing the Web and decided to go onto Facebook.com, a growing online community for college students. I thought I would do a quick search for HIV/AIDS groups in my area, the "Happy Valley" section of Pennsylvania that is home to Penn State University.

But I was surprised to see my search return a group called "I Have AIDS and I Am Not Afraid to Use Them." Appalled but curious, I clicked on the link and saw that there were seven Penn State students and alumni registered to the group. But what stunned me most was the image on the group's page--a picture of a dying man with the tagline "AIDS Kills Fags Dead."

How, I wondered, can society continue to harbor such hatred for gays and lesbians--and for HIV-positive people? Hasn't the younger generation grown up yet?

My name is Tom Donohue. I am a 26-year-old HIV-positive gay man who is an on-again, off-again Penn State student. I'm also the founder and executive director of Who's Positive, a national nonprofit organization that focuses on preventing HIV among young adults, particularly college and high school students.

Who's Positive uses HIV-positive speakers to tell their stories and to humanize the disease in an effort to connect with young people on a peer-based level and encourage them to protect themselves against the virus. Basically, I tell my story and use my experiences to keep young people from becoming HIV-positive.

But it seems like there's still a lot of work to be done, based on what I saw on Facebook.

I am gay. Does that mean every gay person is HIV-positive? Of course not. But that message hasn't seemed to reach the people who created this offensive Web site. Granted, the creators of it probably are straight and think they're impervious to HIV, because they still think HIV is a gay disease. But I have to wonder how many of them have straight people in their lives who already are HIV-positive but just don't know it yet. For them, right now, ignorance is bliss.

And that kind of ignorance isn't limited to thoughtless postings on Internet sites. I've experienced it firsthand. At a Who's Positive program just this year at Penn State, I told the group of students that I was just like them, with one difference: I was HIV-positive. A student raised his hand and said to me that I was not like everyone else; that in 15 years I'd be sick and dying.

This was coming from a 21-year-old college student you would have though had learned the basics of HIV as a high school student!

I thanked him for his comment but pointed out that it is ignorance like his that fuels HIV stigma among youth. Just as important, I said, that ignorance also makes HIV-positive people feel as though they have to hide their disease for fear of being rejected or persecuted. I suggested that before he continues to talk about HIV and verbally attack those living with the disease he should learn more about it, how it is spread, and the fact that anyone can catch it.

Unfortunately, encountering that kind of ignorance hasn't been an isolated incident for me. I was once speaking at a school that happened to be having a blood drive at the same time I was visiting. Two students, dressed as the school's mascot and working to drum up interest in the blood drive, came over to a table where I was talking with another young woman. They asked her if she was going to donate blood, and she said she was going to later with other members of her sorority.

Then one of them turned to me, and said, "How about you? Why don't you go and give blood?" I told him I wasn't eligible. He asked why. Honestly, I wanted to tell him it was none of his business, but I recognized this as a chance to educate him about the realities of living with HIV. So, I told him that I am not allowed to give blood because I am HIV-positive. His exact works to me were, "Nuh-uh. You don't look like you're HIV-positive. You're just trying to get out of giving blood." I asked him what he thought an HIV-positive person looks like. He said they look sick, and I didn't look sick. I handed him my card and suggested he attend my program.

Luckily, many of the times I've chosen to disclose my infection haven't been so marked by such blatant ignorance. I told my roommates in October 2003 that I am HIV-positive. I was lucky enough that they knew you can't contract the virus by using the same cups or same bathroom. I had really feared being rejected by them because I know of so many young people who've been turned away because they are HIV-positive. They are shunned by their families, kicked out of their homes. Many struggle to just have a place to live.

While telling my roommates turned out to be a positive experience, disclosure hasn't always been that way for me. Some of the people I've told quickly backed away from me. They distanced themselves, I think, because they didn't know how to handle it, they didn't know how to approach it.

Because of my work in HIV prevention, many people in my community know that I am gay and know that I am HIV-positive. When I go out in public, I can still feel their nervous eyes on me. I go to a party or a bar and almost feel like I shouldn't be there. No one says it to my face, but I feel it. It's even worse if I show up with someone. In the past, when I've announced I'm dating someone, people assume that he must also be HIV-positive. If I go out with someone--even a friend--people automatically assume he's infected. It's crazy.

Ignorance like that just plays into the hands of those who are homophobic and who stereotype gay people when it comes to HIV. They also are the ones who are the most misinformed or uneducated about HIV, believing that only gay men are at risk and that they are somehow immune. Because of that, I usually don't announce that I am gay when I'm conducting HIV prevention programs for my peers, because once they hear that I'm gay, they assume that my talk--and HIV--isn't a concern for them.

These are the same kind of assumptions that keep many young people from getting tested. They think that because they are not gay they're not at risk, and because they are not at risk there's no need to ever be tested.

There's also an unbelievable sense among young people that bad things, like HIV infection, can't happen to them. Yeah, that's what I thought too. But one moment of passion, of intimacy, of irresponsibility with one person just one time ended that line of thought for me. Now I'm doing everything I can to help end that line of thought for others before they learn the hard way, like I did.

The work, though, isn't easy. It's very hard to talk about sex. It's also hard to get people to talk with their partners about HIV. Someone once asked me, "Why is it that we can bare ourselves physically, which to me is the most vulnerable state, but hesitate to ask someone to apply a condom?"

One obvious answer is that we need to tell people it's OK to talk about sex. We all need to talk about it. We need to remove the taboo about sex, start talking about it earlier, and bring comprehensive sex education into our schools. The more we can talk about sex, the more we as a society can accept that it happens and give young people the knowledge and the tools to protect themselves.

And we must welcome programs like Who's Positive into our schools. We, as an organization, have such a difficult time getting our programming into high schools, despite a desperate need among teenagers for information about HIV and how to protect themselves from it. There's more to HIV education than showing young people a movie about people dying of AIDS in Africa. We need to teach them that HIV infects and affects people in every neighborhood right here in the United States, that someone like me, who is HIV-positive but healthy, can be among them, and that even some of them may be infected and not yet know it. We need to make them see the importance of learning whether they are HIV-positive, to protect their partners if they are, and to take steps to remain uninfected if they're not.

HIV ignorance has to stop--and a good place to start dismantling it, I thought, would be with those who created the offensive Facebook page I stumbled across. Since its creators were all Penn State students or alumni, I contacted the university, and after jumping through several hoops and talking with numerous university officials, I was finally told the students and alumni had been contacted and that their Facebook site had been condemned by the school. I also was urged to contact them directly through their e-mail addresses posted on the Facebook site if I wanted to pursue the issue further.

Frankly, I expected more, given that university e-mail addresses were used to post hate material. But maybe the whole situation is a lesson that we can't rely on our institutions and our leaders to fix the problems of HIV stigma and homophobia. Maybe we should take charge and do it ourselves.