I hadn’t come out of the closet yet in the 1980s but anyone who even glanced at television or print news knew that there was a storm brewing over AIDS and its impact on America and the world. I knew that President Ronald Reagan and his government weren’t behind funding for research to help stop the disease but as films like “The Normal Heart” will tell us, there were people fighting extremely hard to be heard.
And I've been as guilty as anyone by thinking that the AIDS crisis is more a thing of the past than the present. I knew it wasn't gone but assumed it was something left for the history books as we put our focus on marriage equality and enjoy the fact that visibility of the LGBT community is as high as ever.
It’s very fitting that today, World AIDS Day, we get a new documentary to wake everyone up to a problem that has never gone away. The documentary airing on Showtime tonight is “The Last One,” and not only gives us the history of the AIDS Quilt but also educates us about how HIV infection rates are climbing once again in both young and older people. Shocked? I was! The powerful film is an important one for everyone to see to be educated once again.
I had the pleasure of chatting with activist Cleve Jones last week about his part in the film and his role in spreading the word on a history that isn’t about the past, but also the present.
Why do you think it’s important that we tell these stories and people know the history of this disease that’s way more present than I think a lot of people realize today?
CJ: Just recently I was having a conversation with a young man in his early twenties who was talking about how AIDS was something from my generation and I had to point out to him that AIDS was very much a part of his generation. Unfortunately his generation doesn’t have the same sense of solidarity that my generation experienced in driving back against the pandemic. This is part of why we see an actual increase in the infection rates among 18-25 year old gay and bisexual men.
That statistic totally surprised me because I wouldn’t have guessed that, but I guess that’s the reality.
CJ: It’s kind of shocking actually. It’s the United States we’re speaking of here, transmission rates are down in most categories and we’re holding steady at about 50,000 new infections a year which in my view is unacceptable. The numbers are driven by an increase of about 135% in the last year to that group of young people. It’s not that difficult to understand why. They don’t have a memory of what my generation went through and people were dropping dead all around us, but also it’s the education campaigns have dwindled.
There's an idea that young people are being fully educated. I meet young people everyday from parts of the country where there's absolutely no sex education, let alone HIV education. It continues to be a problem and so often with these problems we look at the statistics and we talk about the numbers but I think what the Quilt has always done is bring it back to the actual lives, the actual human beings behind the statistics. That was certainly part of my goal when I started the project.
Back in the 1980s, the government was not getting on board with helping because they didn't see it as a problem. Now do you think it is the main problem today is just education?
CJ: Well, I don’t think the lack of education is the only problem. HIV is increasingly a disease of the marginalized populations. Poverty is part of it. Drug use is part of it. Also to a very large extent stigma remains one of our greatest obstacles. In the early days of the pandemic the stigma of homosexuality was really what kept the government, our government and many others from responding. It fueled the hysteria and created many obstacles. Well the stigma has not gone away. It’s changed though.
Young people today, the stigma that they experience comes from their own people. From my generation the stigma came from the outside world and really was the stigma against homosexuality. For these young people today though they are being blamed and shamed. It discourages them from getting tested; it discourages them from talking openly about their status. There's a new study that shows that almost half of gay men do not reveal their sexual orientation to their own physicians. I think that right there was a pretty startling fact. If half of gay men in the United States don't feel comfortable revealing their sexual orientation to their physicians, we have a real problem.
When I talk to young people, what I find is they are very reluctant to get tested. If they do test positive, they're very reluctant to share their status with their partners and their friends. They don't have access to the kinds of support networks that my generation had and it scares me. I think there's still a need for a great deal of work on this.
One of the points in the documentary that really stood out to me is when the Clintons came to see the Quilt, and you talk about that in there in the film. Was that a turning point in your opinion?
CJ: That weekend when the Clintons visited the Quilt on the Mall in ’96, it was a turning point. It was a symbolic turning point in having the President and First Lady walk on the Quilt in the Mall but also the new drugs were beginning to work. In my conversation with the President that day I told him that I know people who had access to the new drugs were already not only leaving their deathbeds but also going back to work. I remember that autumn as being a time of young folks for the first time in over a decade.
Cleve, you've been so involved with this since that era up through today. Is it easier or still troubling to tell these stories and know that we've made a lot of advances but there are still a lot of places to go? How do you personally feel about being a part of it? In many ways you're kind of a holder of a lot of this history.
CJ: Well I just turned 60 a few weeks ago and I had a party and raised money for the AIDS Foundation, which I co-founded here in San Francisco. I’m very grateful to be alive and people are really very kind to me. I’m grateful for that, but I still carry around with me a great deal of grief. I still miss my friends. The people I was supposed to grow old with mostly are gone. One of the really painful realities of my life has been that I lost almost all of my friends early in the epidemic. Then I made new friends and then I lost them. For me it’s always present and when I walk around my neighborhood I see all the new people that are here and I also am aware of the ghosts of those who were here before.
Is it hard for you to be there in San Francisco with everything you’ve seen over the years?
CJ: For a while I couldn’t be here. I had to leave. It was just too much. Now I love being back in my neighborhood. Yes, everyday I am confronted with memories that bring a mix of emotions, but I love the neighborhood. I feel very safe, protected, and appreciated here. I know everybody and everybody knows me. That’s a good feeling. It’s still a beautiful city and I’m grateful.
There is kind of a controversy going on in the community right now around the issue of pre-exposure prophylaxis. Of course the slogan from my generation was that Silence = Death. I think the slogan today needs to be that Treatment = Prevention. The researchers that I’m in touch with, and I still speak with some of them, tell me that a vaccine and a cure are still years away. But we do know that people were successfully treated, people who are HIV+ are being successfully treated are very unlikely to transmit the disease. Now we know that uninfected individuals by taking one pill a day can prevent themselves from being infected. Now there’s a controversy about this.
People are speaking in very harsh terms about young people and criticizing them for being irresponsible. There's a lot of finger wagging, shaming and blaming going on. I wish it would stop. My message to young people and what I think everybody should be saying to these young people is that we love them. That they are beautiful. That their lives matter. That their lives have value. That the choices they make are important. We're talking about a population that does not need to be further put down. We're talking about a group of people who need to be raised up and shown as much as possible the promise that we've seen when we look at them.
I'm almost embarrassed to say, if someone had asked me before I saw the film if the Quilt was still out there and what had happened to the Quilt, I wouldn't have known. I'm so glad the film told me that it's still out there. Was that part of the point of the film as well, to make sure people know that this is still out there?
CJ: It’s part of why I’m happy the film was made…I wish it was more visible and I think these new infection rates among the younger generation are further evidence that the Quilt needs to be seen again. People need to know about it. About the story and the history and to hear about lives that were lost and the fights that we had to wage because it’s not over. I am increasingly hopeful at 60 years old that in my lifetime I will see gay people achieve equal protection under law and maybe just maybe the last panel sewn into the Quilt.
I was also surprised at the statistic that people over 50 are still getting infected.
CJ: I remember being startled when I saw the infection rates among the senior population but I think we also have this prejudice, this belief that older people aren’t interested in sex and it’s not true.
“The Last One” airs tonight at 8:30pm on Showtime or anytime on Showtime OnDemand.
The opinions expressed are solely those of the author and do not necessarily reflect the views of Comcast.