The Unexamined Cost of Reduced AIDS Activism.

Last week on a cruising site, I got a message from a twenty-four year old, that stated, “I just read your profile. You have AIDS.  You don’t have a chance,” — I assumed he meant that I had no chance with him and not that death was certain.  I had not attempted to hit on this young man; he offered this message of his own volition, without solicitation. Over the past decade, my experience of comments like this has become increasingly frequent, and this is among the more reasonable of my unsolicited rejections.

When I get these messages, my first thought is always: Years ago, I would have never gotten a message like this – not from an openly gay person. And that feels true.  Fear-based hate was expected from the mainstream world, but not from those whose desires would seemingly motivate him to become aware.  In those days, a young person would more likely ask me unsolicited questions about how I got HIV, or if he could really trust condoms.  Few would equate HIV with AIDS as so many seem to do today.  Looking back, I realized that HIV has put many social limits on me.  But back then, our level of activism made our social reality different.  People were just better educated and in turn, weren’t as rude. 

An early San Francisco AIDS PSA - A part of education efforts that have diminished

Because of my HIV status, men who were clearly attracted to me refused to date me, and men in chat rooms declined to meet me.  A few men went on dates with me, took me home and when we began to get intimate, they became too freaked out to continue. But those men usually apologized as they left; making it clear the shortcoming was theirs. At least two men dated me but ended our relationship as soon it could get serious, because they feared loving an HIV+ person.  I was once denied the opportunity to take meeting about directing a major movie, because my status meant the studio “could not secure insurance for me.” Perhaps I was just lucky, but it wasn’t until HIV became manageable that I began to feel real hate from within my community.  I can’t help but feel we once collectively had better etiquette around HIV. 

I have been HIV positive since the late 80’s, and active in the HIV community since the early 90’s.  I felt a lot of awful in those early days.  But what I almost never felt was shame about my status cast on me by other gay men.  In those days, news of my status was met with love, compassion, respect, occasionally pity, and often with encouragement to live the time I had left to the fullest.  It seemed every gay man I encountered knew the nature of HIV, and it’s very real costs. We all preached the ways to stop it from being transmitted.  But as the dying stopped, and as social life moved from bars to the internet, the preaching stopped.  We all began to notice an uptick in the number of men who chose to sero-sort, or choose partners based on the criteria of HIV status.  Despite fully knowing that there could never really be a “separate but equal,” world, we, as a community, stayed silent on the topic. And as we all know, silence is complicity.

Twenty years ago in New York, men who chose to separate themselves based on HIV status lived lonely and sad lives. But in those days, we all had our AIDS education, and if we didn’t social norms demanded that we get one — fast.  Ignorance was not a luxury we could afford.  We had to know the facts to survive.  We knew better than to trust anyone who claimed to be negative, we acted as though everyone were positive, all the time. Gay communities and magazines were filled with PSAs designed to keep that fact in the front of everyone’s mind. We learned to be responsible for our own health, and most of us did not risk our lives hoping our partners were forever honest about their behavior.  We trusted condoms and we did not live in fear. 

Now, we have options for effective HIV prevention – condoms, prophylaxis, and viral suppression. (Tangent: If you don’t know how all three of these things can stop the spread of HIV, then you need to learn, right now.)  With the realities of choice, it seems the amount of fear associated with HIV has not decreased, but exponentially increased.  Despite this increased fear, I remain open and honest about my status even though people often react poorly.

Seeing those reactions, Ican understand why many men might want to hide their status. Being on the wrong side of healthy is a daily, inescapable reminder that your body is a threat that must be contained— your blood is somehow undesirable, if not dangerous.  For some it can mean constantly feeling tainted or less than.  Those of use who reject these ideas tend to be the more physically and emotionally healthy.  Some choose to hide their reality because of these feelings.  This dishonesty becomes a vicious cycle that spreads virus. I am sure that more men get HIV from partners that claim they are negative (or hope that they are), then from men who openly state their status.  The most egregious are those men who are just plain lying.  The number of men who hit me up with messages that read, “my profile says negative but I’m positive,” is truly alarming.  This happens at least as frequently as getting slammed for being positive does. Despite all this, with the exception of one instance, I cannot remember ever denying my status. By being honest and protecting people’s choices regarding their interactions with me upfront, I am frequently scorned.

In all this, I think there is something that we have to own.  When the dying stopped, we all took a well earned and much needed break from AIDS activism.  As a result, our community has not done the greatest job of creating a legacy of knowledge. This is in part because so many of us most effected by AIDS are gone, in part because the few survivors are weary and can suffer crippling PTSD, and in part because many of us believe that legacy is tied to promoting 100% condom use. There also a host of other reasons we lost sight of the AIDS activism legacy, and we have lost touch with our responsibility to those we lost— which I will always see as empowering the young to be free, unafraid and unashamed of their natural sexual drives, what ever they may be.

Art and Entertainment industries kept AIDS in front of everyone's minds in the early days

Art and Entertainment industries kept AIDS in front of everyone's minds in the early days

Though a valiant few have stayed in the battle, AIDS prevention work has largely moved from the streets into academia and governmental conference rooms.  As the world continues to change, the majority of our community remains disengaged, never taking the fight beyond tirades on social media.  We never learned how to apply the community teaching methods we used in bars to the cruising sites of the Internet. We stopped giving our dollars and, in turn, AIDS service organizations cut their programs and could no longer afford the PSAs that once saved lives.  We were relatively silent as schools cut AIDS education from their curriculum.  We stopped talking, we stopped teaching, and we quickly returned to the pre-AIDS politics of judging each others sexual behavior with the same harshness the straight community has too often used to judge our difference.

Many young men want desperately to be different than those of us who came before them. They don’t want our tragic past to define their lives and their future. And that is understandable.  But somewhere we have failed to educate them and give them real context. The result is that they don’t see AIDS as the tragedy it was, but instead place it in terms either of Typhoid Mary-like phobia, or in a category of a manageable risk.  For many of us that lived through it, these mindsets are unfathomable.

On the most basic level, I believe that the message I got from that kid is a direct result of our diminished community efforts.  Those still fighting the fight are lone voices, ripples against a tide of apathy. Anything short of creating rich, comprehensive community education and outreach programs will not be enough.  Until that happens, the fear and ignorance of generations that did not witness our revolution will keep me on the wrong side of healthy— until a cure is not only discovered, but also implemented.