From the highs of the 1970s gay revolution to the lows of the mid-1980s when many of his friends were dying from a mysterious disease; from being near death himself to being granted a reprieve with the invention of the triple cocktail; Cleve Jones has experienced the emotional roller coaster of life as an HIV-positive individual. He was responsible for one of the most emotionally poignant symbols of the fight against AIDS: the AIDS Quilt. A lifelong political activist, Jones used his anger and despair at the deaths of many of his friends and San Francisco's Castro-district community members to fight for more recognition, funding, and acceptance of AIDS victims. Although he still struggles with controlling his own infection and the side effects that come along with the medicine -- he recently had plastic surgery to combat the fat redistribution resulting from his anti-retroviral drug regimen -- Jones works full time at the Los Angeles Shanti Foundation, which provides emotional support for HIV-positive people, and travels widely to promote AIDS education. This is an edited transcript of an interview conducted Dec. 7, 2004.
- Some highlights from this interview
- Watching people in his community "vanish"
- Why he feels ambivalent about closing the bathhouses
- How he came up with the idea for the AIDS Quilt
- Coming back from near death after starting the triple cocktail
- The triple cocktail's side effects
What was gay life like in San Francisco in the '70s? Vibrant? Fun? What was the atmosphere?
The time before AIDS -- it's hard to imagine it today, but it was an incredible time. The 1970s were extraordinary. I'm very grateful that I got to experience a full decade of being part of the gay movement before AIDS.
I think what was most exciting was that it was all brand-new. All of us who were participating in it were doing so with an awareness that what we were doing had never been done before. So many of the things that people take for granted now, like gay marching bands and pride parades and gay churches and gay synagogues and gay newspapers and gay film festivals -- I remember when the first of each of those happened. There was a wonderful sort of self-awareness among everyone that what we were doing had never been seen before.
It was a revolution. Was it a political revolution or social or a bit of both?
It was a political revolution; it was a social revolution; it was a sexual revolution. For those of us who were part of it, there was a wonderful sense of self-discovery, because I think I'm a member of the last generation [of] people who spent our childhood thinking we were the only ones. That doesn't happen anymore. But when I was a child I thought I was the only one, and so when I discovered that I was not the only one, that there were thousands upon thousands of people just like me, it was incredibly liberating and exhilarating.
You said that it was also a sexual revolution. Try and explain to a non-gay audience what that really means.
Yeah. I think that it's difficult for heterosexual people to understand. When you grow up and it is your sexuality that makes you different, when you grow up and you are aware that your sexual desires are not countenanced by the larger society, you really focus quite a bit of your inner energy and inner thoughts on grappling with that issue. There was a great deal of shame associated with it, a great deal of fear.
To suddenly have that shame and fear removed and to be allowed to participate, to be allowed to express yourself sexually, was tremendously exciting. People tend to focus on some of the more sordid aspects of it, but even when they talk about things like the bathhouses -- I went to the bathhouses. They were lovely; they were clean; they were friendly. It was a place for socializing. It was where I went and met my friends and planned demonstrations. There was a romance to it that is hard to explain today and hard to imagine. But my recollection of those days is that they were terribly romantic, really, in a naive kind of way. There was a gentleness to it and a sweetness to it that is unimaginable today.
Randy Shilts in his book [And the Band Played On] says to everybody who lived through this transition, the world was before and after AIDS. Do you agree with that?
It's as if there was a wall and everything changed, and it really changed almost overnight. You went from a joyous time to a time of misery and suffering.
Cast your mind back to when the first rumors and reports start to spread around. What were people saying?
I have memories from 1978 and 1979 of friends of mine contracting diseases that I'd never heard of, or that I'd heard of but only in the context of impoverished countries. I remember a friend came down with meningitis, and that seemed to me to be odd. There was also quite a bit of hepatitis going around. So here was sort of a glimmering realization, but nobody took it too seriously, because the sexually transmitted diseases were easily treated with just a few doses of antibiotics.
For me, the first awareness of what was happening came with that first Morbidity and Mortality Weekly Report out of the Center[s] for Disease Control. I was working at the time as a consultant to the health committee in the California State Assembly, so I subscribed to all of these publications, and I remember quite vividly a clipping, a two- or three-paragraph article about the cluster of homosexual men in Los Angeles with Pneumocystis pneumonia and Kaposi's sarcoma. I believe that was in the spring of 1981. Within just a couple of weeks after that came out, I got transferred back to San Francisco from Sacramento, and I took a job in the State Assembly in Art Agnos' office, and that was when Dr. Marcus Conant called me from the University of California in San Francisco and said that he wanted me to see one of his patients.
And this is Simon Guzman?
Tell me about seeing Simon Guzman.
It was heartbreaking. I don't know why, but somewhere deep inside of me that day I knew that something unimaginably horrible was coming. Simon was a young Latino man. … There were photographs on the table by his bed that showed him before he was sick, and he was a beautiful young man. He was athletic. There was a photograph of him on the beach with his family, his nieces and nephews, and he had his shirt off, and he was strong and tanned and this beautiful face with these gleaming white teeth and this big smile.
Then you look at what's left of him on the bed, and it was truly horrifying. I believe he died three or four days after that.
What did he look like when you saw him?
He was emaciated. He had tubes running in and out of his body. He was unconscious. He had tumors covering most of his body. I believe he was blind by that time. It is a hideous disease.
Just going back on the Morbidity Report. If I remember right, didn't you actually write something on it and pin it on your wall? Tell me that story again. You had a premonition.
Well, during the years prior to that report, the gay community had been through a lot, and I had been through a lot. [San Francisco City Supervisor] Harvey Milk was my mentor, my friend. He was the person who encouraged me to get involved in the political organizing. And of course he'd been murdered in 1978. There had been a riot. I was investigated by the grand jury, been through quite a bit, and things were just starting to look to me like they were moving forward. So when I saw this article I cut it out and I wrote on it, "Just when things were starting to look up," and I put it on my bulletin board.
Like a premonition.
It really disturbed me. I remember my mind kept going back to it, and I kept trying almost to look away from it, but I just kept thinking, what could there possibly be that we were doing that was really that different from heterosexuals? Because as much as people want to say that we're so different, if you look just at the physical aspect of lovemaking, what we do is not that different. I don't believe there are any practices that gay men engage in that a considerable number of heterosexuals do not engage in.
We looked at recreational drugs and couldn't really see anything there that was unique to our community, so it was very, very puzzling. I think I even had nightmares about it very early on, before we knew anything, but it troubled me greatly.
Was the uncertainty itself frightening?
I think the uncertainty was the worst part of it. People forget now that we had to go for quite a while before we learned that it was a virus. Then it was even longer before we were clear on what would transmit the virus and what would not. But it was a very frightening time, and people became very paranoid….
…You saw Simon Guzman as the first patient. Did you see many other people in the hospitals, friends?
My memory of it, when I think back, it seems like it was just an avalanche. It was like one week we'd never heard of it, and then the next week everybody started to die. Now, I know that's not really the way it was, and it unfolded a little more slowly than that, but it was so sudden, and people didn't talk about it. They were too frightened. Even in our community, there was a great deal of cruelty. So people began to vanish.
It was my friends. My circle was hit hard and hit early. By 1985, almost everyone I knew was dying or already dead. This feeling of people disappearing was terrifying, because it wasn't just my friends and colleagues…. It was also the people I saw every day but whose names were not known to me -- the bus driver, the mail delivery person, the baker, the guy I would see walking his collie every day in the park on my way to work. One by one, all these familiar faces disappeared. And there was no treatment, and people died very quickly.
To this day if I'm in San Francisco, I cannot go down Geary Street by Kaiser Hospital. I think in the first two years of the epidemic, I must have watched 40 or 50 of my friends dying in that building. I look at that building, and I fall apart.
I heard that in the Castro you could see people, sort of like the walking dead.
I one day saw a person die on the corner. I was having coffee in the cafe, the Cafe Flora, and I looked up and saw what I thought was an old man leaning against the telephone pole, and I thought, oh, look at that old man; he needs help. He fell down, and we went over, and he was dead. And he wasn't an old man; he was my age.
Now, of course I suppose what made it worse was the fact that the community at large, the straight and political community, were ignoring this, or seemed to be ignoring it.
Nobody cared. Nobody cared. There was no response of any kind from the government, from the medical establishment. We were completely on our own.
What I did was I tried to fill the vacuum left by the government's response. It was ordinary people, ordinary folks, men, women, children -- not only gay. There were straight people, straight neighbors of ours who from the beginning were touched and moved by people like Ruth Brinker, who started the food delivery program [Project Open Hand].
But the government did nothing, and the cruelty of it still infuriates me, that President Reagan could not even say the word until more people had died of this disease than died in the Vietnam War….
I am still angry. I try very hard not to hate; I don't want to feel that in my heart. But I do not forget, and I do not forgive, and I will be angry until I die.
Well, just one last question about the feelings this all engendered. I read that you once called your mother, and she said it was rather like World War II.
… My mother has been able to relate to my experience on a couple of levels. She was in high school during World War II; the boys in her class were drafted and went to war. Most did not come back, and those who did were terribly damaged. So she could relate to it on that level. …
Can you speculate as to why President Reagan was so loath to talk about or acknowledge this disaster?
I think President Reagan was elected by conservatives, Republicans whose base are fundamentalist Christians. I think he was uncomfortable discussing any sort of sexual behavior. But I think there was also a fair amount of conscious cruelty. I mean, there was a convention, a Republican state party convention here in Southern California, I don't remember what year but very early on in the epidemic, and they had a bumper sticker that said, "AIDS: It's killing all the right people."
There were a lot of people that were quite gleeful about this. You had the conservative pundits, the Jerry Fallwells, the Pat Robertsons, all of these disgusting people saying things like it's not nice to fool mother nature you know, making little jokes out of it. And I think there were people that were quite happy about it.
…[Following Rock Hudson's death] you actually organized or led the demonstration outside the White House. …What was the nature of the protest? What was the point of it?
We were just grasping at anything we thought we might do. I heard people plan public suicides. They didn't happen, but that was how desperate we were. I remember all sorts of crazy ideas about what we should do. We did anything we could, and part of that was lying down in the street in front of the White House.
You're a politically savvy person, been in politics all your life one way or another, street politics and state politics. There were two kinds of gay activity, weren't there? There were some people who sort of tried to work the inside of the system, and other people who would take to the streets. Who do you think was more effective, or were they both effective in their different ways?
… Much has been made of the dichotomy between the two approaches. I have always felt that both approaches were valid, useful and necessary, and that the conflict between them was somewhat overblown. Harvey Milk was the person who gave me my bullhorn. When he got elected to public office, he said: "You keep people on the street. I'll be working on the inside; you keep them screaming on the outside, and we'll get more done." So I think they are complementary and not opposed. …
Do you think that the more militant gay demonstrations and organizations, ACT UP [AIDS Coalition to Unleash Power] and so on, alienated so-called Middle America, or do you think that didn't matter anyway?
With 20/20 hindsight, I don't know that I would have done anything differently. I don't know that we had any other option. It was only gay activists who were responding. So our response -- as necessary and as valid as it was -- contributed quite a bit to reinforcing the notion that this was a disease of homosexual men. I never believed that; it was inconceivable to me that this would remain with us. And now, with our knowledge of the history of the virus, we know that what happened to gay people, what happened to my people, what happened to me, is only the tiniest fraction of the global reality that is HIV. But because we were the ones who led that initial response, it reinforced that.
There were certain things that were done that I think were probably a mistake. I'm thinking particularly of the confrontations with the Catholic Church. Some of those actions were probably not the wisest. But what do you do when everyone you know is dropping dead all around you? There was huge anger, and the church was wrong, and the government was wrong, and the Republicans were wrong, and the Democrats were wrong, and we were the only ones fighting. So yes, I think much of what we did alienated Middle America, but I don't see what the alternative was.
[What was the actual effect of federal government inaction and the president's inattention?]
I think everyone needs to be very clear on the political failure and the consequences of that failure. The reality is -- and this is not my opinion; this is historic fact -- that this nation, … the one nation on earth with the resources and the institutions and the money and the knowledge that could have made a difference, that could have stopped this -- there was just the briefest opportunity where enlightened, swift, funded action could have stopped it. And we failed. We failed absolutely, and we failed for one reason and one reason only, which was that this was perceived as a disease of homosexuals, and homosexual lives were not valued sufficiently to defend.
The consequence of that inaction is that some 50 million people today face death, and of course the vast, overwhelming majority of them are heterosexual men and women and their children.
The bathhouses were an important part of the community. It goes back to the reality of the lives that we were living as incredibly sexually repressed people. I still believe that it is the behavior that spreads the disease, not the location where you're engaging in the behavior. We've seen in those places where bathhouses have been closed that there was no discernible drop in the infection rate. The problem is the behavior, not where it's located.
[With] the bathhouse controversy in San Francisco, I was ambivalent. I was one of the people that had a lot of trouble deciding what to do about it. I'm still ambivalent. I don't go to those places anymore, but I'm loath to condemn people who do, and I'm very, very leery of shutting them down.
Another thing you have to understand about the bathhouses is that a very significant proportion of the men who patronize those places do not identify as being gay. They tend to be married; they tend to be people that are in the closet; they tend to be people that are not part of the community, the scene. They don't go to clubs and discos and bars. They don't belong to the social organizations or the political organizations. For them, the bathhouse was that one outlet.
So I think the bathhouses could play a significant role in fighting [the epidemic]. Many, many of the bathhouses in the cities that still permit them do play a responsible role in combating the epidemic. In this city today, in Los Angeles, we have some that are used like this. Some of them are very responsible, offering free, anonymous HIV testing in their establishments, providing condoms, providing safe-sex information, graphic posters explaining what is safe, what is non-safe. Some of them are irresponsible and permit unsafe behavior and encourage drug use, and so I think it's important to look at it carefully and understand the nuances of this kind of behavior.
... Heterosexuals were shocked by what they read about bathhouses and general promiscuity. Were there people within the gay community itself, like [writer and AIDS activist] and Randy Shilts, who said that things were going a bit too far? Is that a fair summing up?
I have no intention of absolving gay people of our own responsibility. [It] is an issue today, something that I'm very angry about. This disease is continuing; it's being passed on to another generation. That's unacceptable. [There] are people in our community who have behaved irresponsibly, just as there are people in any community who behave irresponsibly. I feel no need to minimize that or deny that. There's a lot about our community then and now that I don't like, that I fight against.
I don't particularly care what heterosexuals think about us; I care about my community. If straight people are shocked by some of these behaviors, that is not what concerns me. What concerns me is the need for gay people to be kinder to each other, to take more responsibility for each other, to live up to the notion of a community.
... Merv Silverman [then head of the San Francisco Department of Public Health] was coming under pressure to close the bathhouses. People who opposed the closedown, what would the essence of their argument have been?
The people who opposed closure of the baths were very frightened that this was the first step. Again you have to understand that the whole concept of a gay community was still brand-new, it had not been tested, all of the institutions we take for granted today were just being created.
There was a great fear that if we allowed the government to close these establishments, what was next? Is it such a leap to say, well, if people are going to go to bathhouses and have sex, we have to close those places -- well, then, what about bars where people meet and then go home and have sex? Are we going to close them down? And then what? Then what? How far into our bedrooms will the government be going? Those were not unrealistic fears in this country, then nor now. ...
What kind of exchanges did you and [Silverman] have over the bathhouse controversy?
… Merv wanted desperately to have the leadership of the gay community say, "It's time to do this." We, on the other hand, were perhaps willing to acquiesce to a decision made by him, but people were very leery of taking responsibility for it. I mean this with no criticism at all. Really, it was a very, very difficult time. … It's ironic to me that today San Francisco is virtually the only city in the world that does not have bathhouses. …
Well, I'd have to say really that the story of the AIDS Memorial Quilt began before I was born, back in 1952, in a small town called Bee Ridge, Ind., where my great-grandmother took some remnants of my great-grandfather's pajamas and began to sew together some quilts, because my father, her oldest grandchild, had just married, and she was anticipating the birth of her first great-grandchild.
When I was born in 1954, there was this quilt, and it's actually part of my earliest memories of childhood. Whenever I was home with a cold, my grandma and my mother would make a bed for me on the living room sofa so I could watch television, and they would tuck me in with this quilt. My father many times explained to me that this quilt had been made for me by my great-grandmother, of whom I had only the vaguest memories. I still have that quilt and still love it. …
By November of 1985, almost everyone I knew was dead or dying, and a few days before Nov. 27, I was walking up and down Castro Street with my staple gun putting up posters reminding people of the [annual] march [to honor Harvey Milk and George Moscone], and I picked up a copy of the San Francisco Chronicle, and there was a headline saying that 1,000 San Franciscans had already been killed by AIDS. I remember standing on that corner of that intersection and looking around and grasping for the first time that of those thousand, virtually every one of them had lived and died within six blocks of where I was standing, and there was no evidence of it. …
I was with my friend Joseph Durant, and I remember saying: "I wish I had a bulldozer, and I'd knock these buildings down. Maybe if this was a meadow with 1,000 corpses rotting in the sun people would see, and they would understand, and if they were human, they would be compelled to respond." …
So the night of the candlelight march, Joseph and I had stacks of cardboard, lightweight cardboard placards and sacks full of magic markers. We asked everybody to write down the name of one person they knew who had been killed by AIDS. People were ashamed to do it. They would put initials or just the first name, and then finally one guy took two pieces of paper, taped them together, and in big block letters wrote, "Thomas J. Farnsworth Jr., my brother -- he's dead."
Other people saw that and were ashamed of their shame, and people wrote their names, and we walked as we always do with our candles to City Hall, and then I had everybody go another block to the Federal Building. I'd hidden extension ladders in some shrubbery, and we pushed through the police lines and put our ladders up on the wall and with big rolls of tape, and we climbed three stories up and taped these names up on the gray stone facade of that Federal Building. It started to rain.
There were thousands of people standing there, almost silent. I walked with the crowd, and I could hear people whispering and looking at the names and reading them and saying: "I didn't know he died; when did he get sick? I went to school with him; I didn't know he was sick. I didn't know he died." I was just overwhelmed by the need to find a way to grieve together for our loved ones who had died so horribly, and also to try to find the weapon that would break through the stupidity and the bigotry and all of the cruel indifference that even today hampers our response. I got to the edge of the crowd, and I looked back at that patchwork of names on the wall, and I thought, it looks like a quilt. And immediately I thought of my grandmother and my great-grandmother back in Bee Ridge.
I thought, what a perfect symbol; what a warm, comforting, middle-class, middle-American, traditional-family-values symbol to attach to this disease that's killing homosexuals and IV drug users and Haitian immigrants, and maybe, just maybe, we could apply those traditional family values to my family.
How did it come to be made?
Well, after I had the idea, I thought about it for a year and a half, and it almost didn't happen, because even though I'd been an activist for many years and had a really huge network of friends and colleagues in San Francisco and I was already quite well known in San Francisco as an activist, everybody told me it was the stupidest idea they'd ever heard of. … But during that year and a half, there were three things that happened to me that I think propelled it forward.
The first was that the antibody test came out, and I learned that I was infected. The second thing that happened was I went public with my diagnosis on 60 Minutes and talked about the pandemic and its effect in San Francisco, and as a result began receiving death threats and ultimately was attacked and nearly killed by Nazis, who stabbed me. And then the third thing that happened was my dearest, closest friend, Marvin Feldman, [died].
By the end of that year, with all of those things that happened, I was consumed with hate and fear and despair, and I think it's sort of interesting that this icon of love and courage and hope -- ha -- came out of a person who was sunk down with hate and fear and despair. I hated the straight world. I was so furious. I never broke it off with my family, but I cannot tell you how much I hated straight people. I wanted never to have anything to do with straight people again. It was just the indifference, the cruelty, and it just -- it was unforgivable.
By the time I lost Marvin … I became paralyzed. I couldn't function. It was almost as if I was outside of myself looking at myself and seeing that I was now going to die, not maybe so much from the virus, but that I was losing the will to live; I was losing the will to fight.
And I saw it all around me, people just too beaten down -- too much grief, too much loss, too much fear -- and we stopped responding.
Then I hadn't seen Joseph in a while, the fellow who was with me when we were putting up posters for the candlelight march. I hadn't seen him in a few months, and I saw him on the street, and he was skinny, and his skin was gray, and his eyes were yellow. I asked him, "Are you OK?," and he said: "I don't want to talk about it, but it's time for you to get off your butt and start that quilt. It's a good idea." He was still working part time in I think a theater supply company, and he stole a couple of bolts of fabric, and I went down in the basement and found a box of spray paint left over from Ronald Reagan's last visit to San Francisco, and we went in the backyard, and we made the first quilt panels. I made mine for Marvin Feldman, and Joseph made his for a man named Edward Mock.
That's how it started. It grew slowly, because it was very difficult for people to visualize it, even though I had this picture in my head that was as clear as a photograph and drove me quite crazy for a long time, because I could just see it so clearly, but I couldn't communicate it verbally to people.
Dianne Feinstein, who is now a U.S. senator, was mayor of San Francisco at the time. At that point Joseph and I made I think 40 panels for friends of ours, and a couple of other people had contributed some, and we were permitted to hang those from the mayor's balcony at San Francisco City Hall during the Lesbian and Gay Pride Parade. I believe there were about a million people that day who saw it, and then they had the visual understanding of how this could work.
It worked on so many levels for people. It was therapy. It was something to do with your hands. It was a way to encourage people to talk and share memories. It was a tool to use with the media to get the media to focus on it. It was a weapon to shame the politicians for their inaction.
By the time we first displayed it, it was a year and a day after Marvin died, on Oct. 11, 1987, my birthday. There were 1,920 panels, and we ended up on the front page of almost every newspaper in the country and all around the world, and letters started coming in from everywhere saying, "Bring the quilt to our community." I rented a truck and hired some people, and we hit the road. We were on the road for years just traveling around with the quilt and displaying it as the centerpiece for locally coordinated fund-raising and educational campaigns.
How did the introduction of protease inhibitors affect the gay community?
I think people have to understand that the development of treatment was very slow. It was about 10 years before we had effective treatment. AZT [zidovudine] was the first drug that was developed, but the people who took AZT alone as monotherapy back then tended to die faster than the people who didn't take it. I refused to take it….
In '94, they were starting to work on protease inhibitors, but there were a number of drugs that had been developed, a number of nucleoside analogues all in the same category [of reverse transcriptase inhibitors] as AZT.
When I first started treatment in November of 1994, I started on a combination of three nucleoside analogues. I did AZT, 3TC [lamivudine] and ddC [zalcitabine]. I was near death by that point, and my T-cells immediately went from the low 20s to over 300, and then up to 500. We learned, however, quickly that we would develop resistance to those, so when the protease inhibitors came out, it was pretty astonishing. All of a sudden there was really maybe some rational hope.
I remember actually, when I got the lab results after I began on this combination, I was in the supermarket, and I saw a friend of mine down at the other end of the store in the produce section, and I shouted at him across the store, "Geoff, Geoff, we're going to live, we're going to live!" It was terribly exciting.
How close to death had you been? I heard you were actually planning your own memorial service.
Yeah, I got really sick. I started getting ill the end of 1992, beginning of 1993, and I took about a year to get really dangerous, but then I got Pneumocystis pneumonia in the summer of '94 and got really sick.
It's funny what the memory does with pain. You sort of put it away, but sometimes I have to remind myself how close I came to dying. I was down to about 130 pounds, and I had 20 T-cells, and my hair fell out, and my fingernails and toenails and my mouth was filled with thrush, and I was having vision problems, and I couldn't walk up stairs. I was alone as well. I moved out into the country because I didn't want anybody to see me like that, so I got a little house out in the redwoods up north of San Francisco. Yeah, I thought I was going to die. But I didn't.
Is that the end to the story? Is that a happy end to the story -- the protease inhibitors solve it all?
Well, the story ain't over, and not much of it's been happy. This is what I struggle to communicate to young people who want to believe that AIDS is a manageable chronic condition. I, because of my work, have access to the best minds. I can pick up the phone, and I can call the best physicians and researchers. I have insurance. I have a family that cares for me, so I can afford the drugs.
My experience has been that with each combination that I've used, I've been able to get about two, two and a half, three years out of that combination. The result is that today, at the end of 2004, after 10 years of treatment, I have remained healthy, strong. I work full time, but I have now used up every drug that has been approved. The pills that I take today are my only option, and when the virus, as it inevitably will, mutates to become resistant, then I'm praying that the research and development in the pharmaceuticals will have produced a new class of drug.
But I'm resistant now to all of the drugs. And I take a lot. I take this and this and this and this and this and this and this. Some of these are antivirals, and some of these are pills to combat the side effects.
One of the things we've noticed, especially in the last couple of years, is that a great many people my age are dropping dead quite suddenly from heart failure. There's lipid problems; our cholesterol gets out of whack. I'm also developing lipodystrophy, the sunken part of my face here. If I were to take off my clothes, you would see that I am growing a hump on my back, that the muscles on my legs have atrophied. My legs look like toothpicks, and my belly is protruding. This isn't because I'm 50; it's because of these pills that are keeping me alive but causing all sorts of problems. We're seeing people dying of heart failure; we're seeing people dying of pancreatitis, liver failure, kidney failure. It's pretty frightening.
I'm grateful, but the other part of this that I try to communicate to young people is that the virus that's in my bloodstream has become resistant to all of these drugs. Now, if I were to go out tonight and meet some young man and behave irresponsibly and have unprotected sex, the virus that I pass on would be multidrug-resistant. Here in Southern California today, we see that at least a third and maybe we're getting close to probably half of the new infections are of multidrug-resistant strains of the virus, which makes it very complicated for individuals trying, and their physicians trying, to come up with effective treatments. But also it's very bad news for anyone holding out any hope that we're going to develop a vaccine, because for a vaccine to work, it would have to be effective against this growing number of subsets of the virus, and it's frightening.
We're already seeing here that the death rate is starting to creep back up. We haven't got the infection rate down where it should be. It's going back up, and it just seems like it's starting up all over again.
What is the infection rate? How many people are picking it up now in Los Angeles?
I don't know what the latest statistics are, but it's unacceptable. We're seeing what, 45,000 new infections a year in the country, and people are living longer, but their lives are more complicated. What's heartbreaking is almost all of the new infections are among young people under 25 years old, and unlike my generation's experience, they're much less likely to get tested in the first place. If they test positive, they're much less likely to reveal their status to anybody, far less likely to seek treatment. They don't experience the kind of solidarity that my generation felt. We were embattled; we were in this desperate death struggle. For young people today, it's much, much different.
It's unacceptable. This is really the worst part of my life right now. I accepted a long time ago that I would die of this and that almost everybody I cared about would die of this. I have had to accept what happened to my generation, but to see it continue, I can't accept it.
… I want to jump back to the early '80s. When the test came along, were people afraid to get tested?
People are still afraid to be tested. I have friends who have yet to be tested because they are frightened. When the test first came out, there were actually many people who advocated not taking it, who really attempted to create a public campaign against being tested.
There was -- and it sounds at first glance perhaps irrational -- but there's very compelling reasons. If you get tested, this is America, and we have all of these computers, and we have all of this information sharing, so will your employer find out? Will your insurer find out? Those are the sort of practical considerations. Will this knowledge be kept private? …
There's more the psychological aspect of it. Some people have said to me that they simply could not handle knowing. I can't understand that. To me the uncertainty would be far more maddening. I would want to know what my status was. But I've heard this from many people, that if they were told, if they sat down at the table with the doctor and the doctor said, "You're infected," they think they would go crazy or commit suicide. Some people have said to me that it doesn't make any difference, that they're going to behave either safely or unsafely regardless.
It's important for people to be tested. I encourage everyone to be tested, even if they're not a part of a high-risk group. I want heterosexual, monogamous people to know just what it feels like to wait for that test result. Whenever I speak to college groups, I always say, when people ask what they could do, I say: "Well, the first thing you can do is go out and get tested, and I want you to do this. I want you to go out and get an HIV test, and I want you to tell your family and your friends that you're going to get that test, just so you can get a taste of what this is like for us."
But it's very important, because I believe that the single most important factor in getting people who are infected to alter their behavior is first to have that knowledge….
How did you yourself find out that you were HIV positive, and how did you feel when you found out?
I found out about a week after the test came out. I had signed up for a hepatitis study in San Francisco in the '70s, so I knew that there were samples of my blood that had been stored from the late '70s, and I knew people who were involved with that study. So I called them up, and it turned out that one of the men who was running the study had been a roommate of mine years before. He took me out to lunch and said, "What do you think?," and I said, "I think I've got it," and he said, "You're right."
I felt like I was falling backwards off a cliff. I had rationalized it out. I mean, everybody I'd ever dated was dead. It didn't seem very likely I could have been spared, but I had hidden that hope away. It was devastating. From the moment I arrived in San Francisco, I have loved being gay. I've loved being part of our movement, part of [our] community. My experience with being gay and part of the San Francisco gay experience was an incredibly romantic, wonderful adventure, and my life was filled with love and joy and great drama. And it was like that -- (snaps fingers) -- all of this has gone, you know. Just everything that I had loved the most about being alive seemed to be taken from me in one sentence. …
Jumping forward to today, what effect is crystal meth having on the AIDS scene?
Probably the most frustrating part of our situation today is the problem with crystal meth. Crystal methamphetamine use is spreading like wildfire not only in the gay community, but across the United States….
But in the gay male community, it is really at this point now a parallel epidemic. We're seeing tens of thousands of men being caught up in this. It's just the most addictive drug ever created, and it is very much associated with sexuality. People who use crystal meth will be high maybe for three days, and it heightens the sexual experience. What we're seeing is a clear and indisputable connection between crystal meth use and an entire new wave of infections.
We're also seeing an increase in the death rate, which most of the physicians I've spoken to on both coasts believe is also due to crystal meth use, because if you're high for three days on a drug that takes away your appetite, it's impossible to follow the regimen of taking your drugs. The medications that people with HIV use need to be taken regularly; some of them need to be taken with food, some without food. …
It leaves me baffled and furious, because it is leading to this kind of irresponsible behavior, the transmission of a disease from one generation to the next. What is happening is that we are seeing people who are consciously and deliberately choosing to infect other people, and we are seeing people who are consciously and deliberately choosing to be infected, and I don't know which is more depressing. But that's unfortunately the reality of what we're dealing with right now.
What's the psychology of the people who want to be infected? Is it kind of they see it as an honorable war wound or something?
I recently saw a study, I believe it was from the San Francisco AIDS Foundation, and it was the results of a series of focus groups gotten with young gay men -- boys really under 21, most of them -- who had recently been infected. I was home reading this study, and I had the television on. Our local PBS affiliate was broadcasting a documentary about young African American women, girls 14, 15 years old who had chosen to have babies. It was just by coincidence that I'm reading this report about these mostly white young gay men, boys that had just got infected with HIV, while I'm watching this documentary about heterosexual African American girls who are having babies.
It was astonishing how similar their answers were to the questions that were posed to them. Basically both groups were being asked, "Why did you choose this?" because they chose it. Gay boys growing up in the San Francisco Bay Area in the 1990s were exposed to some of the most aggressive, explicit public education campaigns in the world. It's a politically progressive area. People like me were allowed into the schools. I spoke to some of those kids probably when they were in high school. I took the Quilt to those high schools; these kids knew all about it, and they had access to condoms. Similarly, the young African American women grew up in a state where abortion is legal, where reproductive rights are respected, where they had access to counseling, access to birth control, and they were saying the same things.
The gay boys were saying: "I wanted that man to love me. If I asked him to wear a condom, he'd leave." The black girls were saying: "I wanted that man to love me. Black men won't wear condoms. If I'd asked him to wear the condom, he'd leave." The gay boys were saying things like: "Well, now that I've got AIDS, people are going to care for me, because in the gay community all the love and support goes to people with AIDS. Now people are going to care about me." And the black girls were saying: "I've got this baby now. I'm going to love her and care for her, and she's going to care for me."
Then both groups were asked where they saw themselves when they were 30 years old, and the black girls laughed, said: "Are you crazy? I'm black. What do you think the chances are that I'm going to live to be 30?" And the gay boys' group were saying: "Thirty? I'm gay. Why on earth would I want to live to be 30?" So I think there's a tendency to dismiss the new infections among young people as the result of the natural recklessness of youth, and I'd like to slap myself for every time that I've used the expression on all these young people -- they all think they're immortal. The reality is far darker, and it's far more sinister.
The reality is that in this country today, in this rich, privileged, extraordinary country, we are today producing gay children and black children who when they look in the mirror do not see what we see when we look into their eyes. They see no promise, no future, no hope. It's despair that we're dealing with, not recklessness. …
…[How did you feel] when you saw the quilt laid out for the last time?
The last time the quilt was displayed in its entirety was in October of 1996. I was very proud. First of all, you have to understand that back in 1985, when I had the idea, I saw that picture in my mind so clearly. I saw the entire National Mall from the Washington Monument to the steps of the Capitol, and in my mind's eye I could see it just as clear as day.
When I went up in the Washington Monument and looked down on that and finally saw it exist in reality as it had existed in my mind for so many, many years, that was extraordinary. I was strong and I was healthy again, and I remember walking on the quilt with President Clinton and Hillary Clinton and talking to the president and telling him: "My friends are getting out of bed; my friends are going back to work. Mr. President, we need more money for this research."
And of course, with all of his failings that he has himself acknowledged, President Clinton reached out to us. President Clinton was the first and only president to stand with us on the quilt, and that day as we stood on the quilt we stood there, not only in the presence of our dead, but in the presence of hope. For the first time there was real hope. …
[In your outreach work, have you run into restrictions on what you can say?]
… On weekends I travel around the country and do AIDS education work in high schools and colleges. It's so frustrating, even today, the restrictions. There's many states where I've visited where I actually have to sign a document that lists the words that I may not use, words like condom, vagina, penis, intercourse. We're seeing, I believe, the real consequences of the Bush administration's push for abstinence-only education.
I get so angry about this, because of course parents, educators, clergy, they all have a right, they have a responsibility to communicate their values to the young people with whom they interact. No one is denying that, but they do not have the right to prevent young people from accessing the facts that will save their lives. And today in America there is a concerted effort by the government to prevent young people from learning the truth, and that is wrong, and it is unconscionable, and it will lead to the deaths of thousands of people.