Today, December 1st, marks World AIDS Day, first conceived in 1987 in Switzerland and celebrated widely since the U.S. President’s proclamation in 1995.
I don’t think of myself as an AIDS or HIV activist, or even a health activist, those aren’t my field of specialty. But I do take note, and I pause on World AIDS Day to consider this widespread pandemic, where it comes from, what it means for us now, what it means for social and public health activism, and what we can do to save these millions of people living today with HIV.
When I think of AIDS, I think of a few things: In the 1980s the public outcry in the U.S. by the gay communities when it was called the “gay cancer,” and later, GRID—“gay related immune deficiency.” And I think of safer sex campaigns that try to raise education and awareness about getting tested, knowing your status, keeping yourself safe. I think of how it’s now seen as an “African disease,” a problem in the global South, and of the many quotes I hear in the news about the misinformation in African nations.
Millions of people have died from AIDS, though people don’t die nearly as quickly as they used to. Now it is possible to live with the virus virtually undetectable, but that is not a cure. You can’t stop treatment, or it will come back. According to U.N. AIDS estimates, there are now 33.3 million people living with HIV worldwide. During 2009, 2.6 million people became newly infected with the virus, and 1.8 million people died from AIDS.
While those numbers are staggering, they seem foreign and about somewhere else, not necessarily related to me and my friends and my world. I do know some people who have been diagnosed as positive, but nobody very close to me, and those I’ve known, I didn’t really stay in touch with. I didn’t watch their struggles. That is a luxury I know that is new to our queer generation, as those in their 50s and 60s watched friends, community, and leaders disappear one by one. I know there are whole support systems and networks and communities for folks living with HIV, and I know we’ve done an amazing job raising the level of education around safer sex.
Think about it: Just 30 years ago, books like Mr. Benson were coming out (which, if you haven’t read, you really should, regardless of your own orientation or gender—especially if you like dominance and submission), reflecting a wild gay culture full of poppers, Crisco, leather, and bars full of men who would feed you a beer can full of their piss at a moment’s notice. Certainly that is exaggerated, a fictional enhancement of whatever the real times were like, but it’s not far off. The gay bathhouses, glory holes, the whole culture of the time was sex, sex, sex—anonymous, dirty, quick, intense, with lots of body fluids.
But there were also AIDS activists, like ACT-UP and the Lesbian Avengers, that changed the entire face of the landscape through safer sex education. What young queer doesn’t know about safer sex?
We know all about it, we know the principles: We know how to use a condom—some of us even practiced on a banana when we were younger. Some of us were peer health educators in high school; some of us went on to become sexuality educators. The landscape has changed, again. AIDS is not the threat to young queers that it was 20 or 30 years ago. Now, whether we may or may not actually have safer sex or use the principles of safer sex in their lives, that’s another question. But we know all about it.
We have the generation before us to thank for that.
They passed down their important knowledge, and with our tips on how to survive holidays with our birth families and how to survive our own gender dysphoria, we were also taught how to literally survive, how to keep ourselves alive.
Usually, I think about AIDS in terms of the queer movements surrounding it. And today, there are national and international campaigns by major celebrities and corporations raising awareness (or should I say “awareness,” since how much awareness does one really raise by buying a red T-shirt?) about the AIDS epidemic in Africa.
But there’s another whole piece of this that doesn’t get spoken to frequently: that in-between piece, after it’s initial diagnosis in the gay communities and before the leap to Africa, when AIDS started being recognized by the media as a disease anyone could get. That period when Ryan White was diagnosed in 1984, and became a spokesperson—before dying in 1990, followed by Magic Johnson’s announcement of his HIV positive status in 1991.
My own memories of the movement, and many depictions of AIDS history, frequently skip over that part.
That was when it tipped—in the eyes of the greater public—from being a disease that affects marginalized peoples to a disease that could affect anyone. It was acknowledged by the U.S. federal government. Funding started coming in (albeit slowly).
It seems to me, that this is how public health campaigns work: because these diseases impact marginalized people first, it takes a major campaign for mainstream coverage and funding. It takes changing the social awareness, and it takes raising public consciousness, to have progress. That’s what makes AIDS different than, for example, cancer: Cancer is equal opportunity and can affect anyone and everyone, while AIDS can be prevented with more education and advocacy, and managed well if you have enough money. And as long as those who are privileged, educated, and well off are not being affected by something, or even not quite as affected as other groups, they are able to look away.
At least, until they can’t look away any more. Sometimes, that’s what it takes for people to mobilize: they have to feel personally involved and invested.
It’s similar to raising awareness for other public health issues, other diseases, or for the various fields of social activism. We get involved in these things because we struggle with it ourselves, or because someone we care about struggles. Activist work is difficult, complicated, painful, discouraging—we who do it usually need a spark to keep us going, some reason to be involved.
And there’s a reason that parents, siblings, lovers, or friends of people who struggle get involved: Activism is a tremendous way to channel grief, sadness, loss, and confusion. Activism is a great way to feel productive and worthwhile, that your friend or lover or parent did not struggle through this—whatever “this” was—for no reason. And so, the survivors start telling stories. They try to get us riled up about their issue, to donate, to educate ourselves, to pass on the word, to vote, to advocate for health and safety.
The trick here is that we have to care about what has happened to this other person. To have an open enough mind that you can empathize with another’s suffering and plight. Maybe we can do that today, if no other day.
And for goodness sake, if you haven’t had a test in the last year or two, go get tested. Know your status. Keep yourself safe.