When I was growing up in the early 90’s, we heard a lot about the HIV/AIDS epidemic. It was on the news, on the Real World, part of our sex-ed curriculum, and thanks to the AIDS memorial quilt, in our town community center. AIDS awareness was everywhere, and we owe much of that to lifelong activist, Cleve Jones.
Cleve started out a small town kid from West Lafayette, Indiana. When he was barely out of his teens, he moved to San Francisco and began working for Harvey Milk, the first openly gay politician. Under Milk’s mentorship and guidance, Cleve would establish a vast knowledge of activism and politics, as well as grow a network of influential friends and colleagues. He was played by Emile Hirsch in the 2008 film starring Sean Penn.
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“I was working for a state assemblyman when the AIDS pandemic first began, so I actually remember quite vividly reading the first counts in the Morbidity and Mortality Weekly Report from the Center of Disease Control in June of 1981. We moved very quickly to set up a foundation here and try to do education work, but it really was like an avalanche hitting us, and by 1985, we had lost a thousand people in The Castro neighborhood of San Francisco. By 1986, pretty much everyone I knew was dead or dying, or home caring for someone who was dying.”
Because AIDS was considered by many to be a “gay” disease, there was much secrecy and shame among the general public, not to mention the government and the FDA. A cure, or even just viable treatment options were extremely hard to come by. These obstacles became a form of inspiration for Cleve.
“I was so overwhelmed by the need to break from the stupidity and bigotry that surrounded the disease and to humanize it,” he said. “Say the word quilt to yourself and what does it make you think of? When I say the word quilt, I think of my grandma, or my great-grandma, back in Bee Ridge, Indiana. And it’s a very, sort of middle-class, middle-American, traditional-family-values sort of symbol, so that was the genesis of the idea. And of course everybody told me it was the stupidest thing they’d ever heard of, and I told them all to fuck off.” Cleve laughed when he told me this, but it is that kind of positive, can-do attitude that has allowed him to not only continue fighting as an activist, but surviving as someone who has had to personally experience loss on a level much greater than most of us.
When I asked him about the anger and sadness he has experienced over the last 30 years, Cleve responded with understanding, “outrage and sorrow are appropriate and understandable. I am strengthened by my community and I find strength in the certainty that change is possible, that victory can be won and that no human being is truly powerless.”
Looking back, it seems Cleve has been on a constant journey to fight the haters and naysayers. Pushing through the negativity, as well as encouraging others to stand up for what the believe in has become the cornerstone of his brand of activism.
“The AIDS Memorial Quilt ended up being the world’s largest community arts project. I always tell the “fuck off” part to high school kids when I talk to them, because I think oftentimes young people get brilliant ideas, but they’re afraid to put it out there or for fear their friends might say it sucks. And in this case, it totally did not suck. I think that the real lesson of the pandemic is really the message of the quilt, which is that our live are linked, and whether we like it or not, and we have to pay attention, we have to take care of each other. When it came out, the quilt was considered a very radical statement because it said that all of these lives were valued, all of these lives were sacred, and that whether people were homosexual or heterosexual, or black or white, or rich or poor, all of these lives mattered. ”
The 48,000 paneled quilt is now housed in Atlanta, Georgia. It is too big to be unrolled anywhere in it’s entirety, but portions of it are taken all over the world for viewings. Those interested can also search and view individual panels online, making the memorial a truly interactive piece of art anyone can access.
“When we displayed that last display on the mall (in 2012) it took 15,000 trained, choreographed volunteers just to unfold it,” said Cleve. “Not to mention the thousands of thousands of thousands of families across the planet who actually took up needles and thread or glue guns and made that quilt. I kind of envisioned that it would work, before it existed I could see it, and I could imagine that it would help, to have people working with their hands and telling stories of their loved ones who were lost, a way to reveal the humanity behind the statistics, a weapon to shame the government into action, a tool for the media to look at and use to get the word out — it really did have an impact.”
While the message of the quilt stands strong, Cleve has noticed a shift in HIV/AIDS awareness, as well as prevention.
“There are unacceptable levels of new contractions among young people. We know that prevention education works, and while the quilt is thought of mostly as a memorial, it has also been a prevention tool. Because it was endorsed by the Pope, and the president of the PTA, we were able to get into all sorts of school districts, even in conservative communities. What we learned in the late 1980s was that prevention education works, but it has to be targeted, it has to be explicit, it has to use the vocabulary of the target audience, and it has to be constant and constantly renewed. We’re not doing a great job with that right now.”
Sexual health education is a part of many school’s curriculum, but that doesn’t account for many of the stereotypes and shame that still exist surrounding the disease. As someone who has witnessed the birth of AIDS, the continuing fight for a cure, and the social and political backlash of the last 30 years, Cleve acknowledges that now, more than ever, we must cure AIDS.
“We know that we can create the systems to deliver the currently available medications, we know that people can adhere to the requirements of the regimens, but the issue is they can’t do any of this if they don’t have access to the drugs, and it is a criminal outrage that today people are dying because they do not have access to these medications. Another thing we’ve learned is that if you socially stigmatize health issues you‘re not gonna win your fight. The social stigmatization of HIV contributes to the spread of the disease, because the stigma drives it underground. It dissuades people from being tested, it makes it less likely that they will reveal the results of their tests.”
While it may seem like a lot of the fear surrounding HIV/AIDS has decreased in recent years, it is unwise to think that AIDS is no longer a serious and very real problem. Cleve urges young people to take their lives into consideration every time they are sexually active, and to remind their friends and loved ones to do the same.
“I don’t think this is over. Don’t be stupid. Your lives matter. And the decisions you make matter. And also, don’t ever believe you’re powerless. All sorts of people want you to think you have no power. They’re all wrong. Prove them wrong. Take control of yourselves.”
He’s worked with Harvey Milk, created the AIDS quilt, befriended Hollywood legends, and spent his entire life standing up for what he believes in. But when I asked Cleve what he was most proud of, he had a very short, but beautifully complex and true answer.
“I’ve endured,” he said. “Activists come and go, but I’m still doing it, and I’ve been doing it since I was 17 years old. Actually 14, with the anti-war movement, that’s when I started and I love it. Obviously the quilt was pretty amazing, and to experience having that moment, that flash of inspiration, and then to see truly hundreds of thousands of people make that their own mission was incredible.”
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