HIV/AIDS has defined my generation. As a queer person over fifty, it doesn’t take amazing powers of observation to note that there are far fewer gay men in my generation than there ought to be. Of the men my age that I do know, a large percentage of them are HIV positive. I am lucky to have escaped HIV infection myself.
By the time I was 30, I’d lost many of my closest friends. Many more would succumb since then. They were frightening times. And those times are not over yet.
I came out before we knew what HIV/AIDS was. We heard whispers of “gay cancer” and “gay pneumonia.” We watched on as the media called the disease GRID (Gay Related Immune Disorder) and immediately stigmatized our community. I remember having to go back into the closet after having been out, because I worked in the food service industry and we worried about the stigma. And quite a stigma it was…even after we knew what it was and how it was transmitted.
I remember once being refused treatment by an emergency room hospital nurse because she was convinced that I must have AIDS even though I assured her I did not have the virus. This was in 1994. I still remember her with her plastic helmet and visor covering her face, the plastic covering and gloves that she wore and her refusal to take a blood sample.
Since I was first sexually active, I have never until PreP been able to enjoy an intimate sexual experience without the threat of HIV looming in the background. It was always there…waiting. I have taken the “test” more times in my life than I can count, and it was never easy - waiting to know.
I have watched my HIV positive sibs stigmatized, watched as our community struggled with how and whether to change behaviors, struggled with how to communicate about sero-status (or not), and watched as pharmaceutical companies profited off of our desire to live even while reaping huge financial benefit.
I remember buried lovers and partners. I remember buried best friends and people I thought I’d grow old with. I have witnessed untold suffering and struggle even among those who have survived.
I watched HIV/AIDS undermine the movement towards LGBT* rights, and I have watched the struggle with the disease knit together gay men and lesbians into a strong community of support, for without those women who cared for our community members during the worst of the pandemic among the gay community, we would never have survived it.
I have watched HIV/AIDS decimate countries and populations across the African continent. I have watched as at risk populations shift and morph due to ineffective education efforts, cultural dynamics, homophobia, transphobia, stigma against sex workers, and economic circumstance; watched rates of infection soar among African-American and Latino populations, watched as younger gay men ignore the lessons we’ve learned only to have HIV spike again among young gay men; watched infection rates soar among people of color, the trans* community, among older straight populations who think that it doesn’t affect them; watched HIV take root in southeast Asia, the populations of South America.
I have watched cottage industries around HIV/AIDS support turn into multi-million dollar cash cows.
I have watched candle-light vigils shrink as our LGBT* community sinks into the complacency of HIV/AIDS as a treatable disease.
I have watched survivors grow weary with fatigue and survivor’s guilt, and watched sero-positive friends deal with the effects of long term medication. And still, death awaits them eventually. What is it like to live your life as a dying person for twenty years? Thirty years?
I have witnessed friends who still dedicate every bit of free time to AIDS Walks and Runs and Cycling routes that traverse the nation, afraid that if they stop no one will remember or care anymore about the trauma of this disease. About the people we’ve lost, the great creative minds, the lost potentials, the love and the laughter.
As far as I’m concerned, there can never be enough conversation, never enough reminders about HIV/AIDS and it’s consequences. Mine is a generation where grief, sorrow, and the trauma of this disease are always just beneath the surface. It has informed our struggle for rights and for acceptance.
AIDS is not over. HIV infections continue to soar. And current estimates suggest that nearly 50% of HIV positive people don’t even know that they’re infected. Today, World AIDS Day, is important. We must never let the dialogue stop until HIV/AIDS is wiped off the planet. Whatever it takes. However long it takes.
Please share this if you wish. Remember those who have died. Remember those who still live with this disease every day. Remember those of us who have survived and grieve and struggle to remind the world that it is not over yet.