Kyiv saw recently an event as important for art world as it was for the wider society. At the invitation of the US Embassy in Ukraine, filmmaker David France and civic activist Peter Staley, who has been living with HIV for 28 years already, came to the city. They showed How to Survive a Plague, an Oscar-nominated documentary directed by France, and held a series of meetings and discussions on public health, civic society, journalism and film industry.
How to Survive a Plague chronicles the HIV/AIDS American victims’ fight for their rights since the early days of the epidemic. France was able to collect unique archive footage and create a fantastic story from it, with Staley as one of the main characters.
Following the premiere, France and Staley answered The Day’s questions. This interview is very interesting and informative for Ukrainian audience as this country is experiencing the AIDS epidemic, but also in the context of a broader civil society’s fight for its rights, more relevant than ever here and now.
How did this film appear in your mind?
David France: “I had been thinking about those early days of plague years, before 1996, when the drugs came out. And realizing that people who were not there, younger people did not know anything about that history, people of 40 and under knew nothing about this movement that was built around AIDS, and I wanted to tell that story.”
What was the biggest discovery for you when you were filming?
D.F.: “First of all, I did not film the movie, so the whole thing was discovery. I was discovering all that old footage that was shot by activists, amateurs, and artists, all collecting their own perspective on these early epidemic years. So, for me, it was an exercise in finding enough of that footage that I could tell an intimate story about people’s private lives over that 9-year period.”
So, your discovery had more cinematographic character in finding all the footage?
D.F.: “I knew the story. What I had to discover was the movie.”
What was the most difficult thing when you were working on the movie?
D.F.: “I think the hardest thing for me personally was the emotional cost of going back to that time and remembering it, having lived through it, having survived the plague years myself, having lost many people in my life. It was emotionally traumatic in many ways, to have to go back and remember that in such specific detail.”
Peter, were you scared when you found out you were HIV-positive?
Peter Staley: “Yes. I found out in 1985, very early in the process. I was only 25 years old and Rock Hudson, a movie star, had just died from AIDS. America was in a panic, scared of people with AIDS. And there were no drugs. So, I did not expect the diagnosis, but when I learned about it, I realized it was a probable death sentence, and that I only had a few years to live.”
How did you learn to cope with this fear?
P.S.: “I came out to my family and asked them for their support, and I was one of the lucky ones. Many people with AIDS, young gay men who had to do the same thing were kicked out of their homes by their families. But my family rallied around me and became my support network, comforted me, and helped me along this journey. And then I found other people with AIDS that were fighting to save their lives: Act Up, the protest group that was formed about a year and a half after I found out that I was HIV-positive, and I joined them almost immediately. They became my church, my family, my life. I dedicated myself to fighting with them and trying to push the government to save our lives.”
Have you been ostracized because of being HIV-positive?
P.S.: “I was pretty cocooned living in New York City, where in East Village and West Village you could see AIDS on the streets, you could see people with AIDS walking around. Unless we were in the hospitals, we were able to avert discrimination that occurred outside of those neighborhoods. But when I would get arrested, the cops would wear rubber gloves and be very afraid to handle us. And when I did interviews like we are now, for TV, sometimes you could tell that some guys that were putting a microphone on you were nervous.”
In your film, there are many accusations towards the politicians about the lack of drugs, but I suppose it was more like a scientific problem than political.
D.F.: “The politicians were in charge of financing the federal research establishments. A research establishment is not a federal establishment, and although the National Institutes of Health [NIH] is not the only place where research on the pharmaceutical responses takes place, it sets the agenda and has an enormous budget to respond to public health issues. And the politicians were not funding the public health response to the epidemic. Ultimately, the drugs that were produced and made difference in 1996 were produced by industry with some support from the federal machinery. But both were necessary, and it was really historically necessary for the federal government to show that leadership first before the pharmaceutical company would come in.”
P.S.: “You are right, it was a huge research challenge. But the federal government through the National Institutes of Health is the primary funder of basic research in the US, at our universities. The pharmaceutical companies, they make the drugs, they actually test and figure out which drugs will work, but defining the targets of the virus that the drugs would work against – that is basic research. And the NIH funds that. The government was not doing that, so the pharmaceutical companies did not even know what drugs to create or how to target the virus without that basic research. So, we had to push the government to fund the basic research. And yes, it was a huge research challenge, but it was first a political challenge – you cannot get the research going without the federal funding.”
Does the stigma associated with the LGBT or being sick with AIDS exist in the US today?
P.S.: “Sadly, yes. Stigma remains probably one of the major problems in HIV/AIDS around the world. And not only stigma from general society towards people with HIV, but stigma within the communities, where HIV is spreading. Even we have horrible stigma between HIV-negative and HIV-positive gay men in the US, which we did not actually have at the beginning of the crisis in the 1980s, when we felt as one community fighting this. But now it has reached the state where there seems to be a dividing line, and that is something we have to fight constantly. And it is really hurting our effort to finally reduce infection in the crisis. I do not know why it has become the most stigmatized disease in world history, but it seems to have remained so, and we just have to constantly be vigilant and remind people that this is a virus, just a virus, like hepatitis C and the virus that causes cervical cancer, and on and on. There are so many diseases that are virally related that nobody gets freaked out about, but for some reason, everybody gets freaked out about HIV. And I do not know how to finally end this stigma, but we have to keep trying.”
D.F.: “You also asked about stigma against lesbian, gay, bisexual and transgender people, and it is so different now than it was 30 years ago in the United States when HIV first hit. And at that time, we were entirely disenfranchised as a community and largely invisible to the larger society. We did not have national figures who were gay that anyone knew about, we had no gay people in politics on the national level, and very few, if any, in 1981, on a local level. There was nobody on television who was gay, you would never see anyone on television that we knew was gay. There were no gay people working in media openly, who were using their voices as gay people. We were not part of ordinary American life then.
David FRANCE: “I am working now on a project that would tell a bigger story about the history of this activism for American television. It is a scripted project, which means it will have actors, cast as characters. Somebody will play Peter, for example. He has some proposals, but I do not know if they are going to say yes. And hopefully, if all works out, that will be on television in 2015. So that is a project that will take me through this next year.”
“And now, 30 years later, things have changed entirely. We are all over the place, we are on ordinary television shows, sitcoms, we are on the news, we are delivering the news, we are elected to office all over the country, we are passing laws that are protecting us in every state of the country, we are getting married now in 15 states, or not, depending on whether or not we want to. So, things are totally different, and that is thanks to the movement that really began around AIDS. We really got the power around the fight against AIDS.”
P.S.: “But it is not finished. There are still parts of the country where it is not safe to be gay, there are still tragic stories of young gay people facing such stigma that they commit suicide to avoid it. There is still a lot of work to do. But the distance that we have traveled in the United States and in most of Europe in 30 years has been phenomenal, it has been crazy, shocking, and unpredictable. And probably, one of the fastest integrations of the minority community into the larger society that has ever been experienced.”
In my opinion, probably it is because you had strong civil movements, strong civil society with traditions of protests, of struggling for human rights.
P.S.: “We would have never been able to accomplish what we did if the civil rights movement and women’s rights movement had not come before us. There was a tradition in that century of protest movements eventually being allowed to have their say. And by the time we came around, the government and the police did not attempt to shut us down, we were allowed to protest. It is part of the American fabric, to be able to protest.”
You mentioned different countries. We, in Ukraine and the former Soviet Union, are at the very beginning of this path. Perhaps, you know about some points of our situation.
P.S.: “I met with some AIDS activists here from UCAB (Ukrainian Community Advisory Board), and they protested in front of the House of Ministers with hundreds of patients in very dramatic ways: putting nooses around their necks and masks over their heads, as if the government was condemning them to death. And they did another action where they all wore masks, as if the country was quarantined. They are fighting for healthcare rights, and they seem to be able to protest with nobody stopping them. I think you are right, the tradition is beginning to build here. And the government responded to those actions, too. In different ways.”
But the problem with the far-right movement...
P.S.: “Counter-protesting, that’s what is very scary. Especially for gay pride. We did not face that in the 1980’s. I can only imagine the bravery it takes to be willing to protest with that possibility facing you.”
Is it appropriate to ask you what to do, because our situation is different from yours. But what ways would work here?
D.F.: “We have seen in some Eastern European countries, where gay pride parades have been met with very violent counter-protests, and the police did nothing. Over time, as they kept trying it, and gay rights activists tried to start a dialog with the police, as they pushed year after year to have these marches, the police eventually – hundreds of police – would stay in between, and over time the counter-protesters would get smaller and smaller. It is going to take time, it is going to take looking for allies within government, within even the police force, to try to build relationships. And it is going to take amazing bravery early on to continue to try to show up every year in the face of those protests.”
P.S.: “I was at the gay pride this year in June in Istanbul. They started gay pride marches ten years ago with few hundred people in the beginning. They had some counter-protesters every year, but this year even after the huge uprising in Taksim Square that was put down a few weeks before the march, the government allowed the gay pride march, and there were counter-protesters of about one hundred ultra-nationalists that were surrounded by two to three hundred police officers facing the ultra-nationalists, keeping them pinned in. And there were 50,000 gay pride marchers, who were able to be very free and march at will.”
David, do you have plans to make another movie on this subject?
D.F.: “I do, I am working now on a project that would tell a bigger story about the history of this activism for American television. It is a scripted project, which means it will have actors, cast as characters. Somebody will play Peter, for example. He has some proposals, but I do not know if they are going to say yes (laughs). And hopefully, if all works out, that will be on television in 2015. So that is a project that will take me through this next year.”
The name of your film is How to Survive a Plague. It has this strong medieval connection. You told about these unique repressions against people with AIDS, but it is not for the first time in the history of the humankind, let us remember leprosy, for example. I have an impression that the worst from the medieval ages came back to life with the epidemic of AIDS.
P.S.: “It would be interesting to compare, but I do not know if some of these earlier medieval plagues lasted this long.”
D.F.: “They lasted long enough to develop a fear of people with it.”
P.S.: “They exploded and burned themselves out so fast that I don’t know if that stigma lasted 30 years.”
The humankind stubbornly does not learn a lesson from history.
P.S.: “But at least they had an excuse of not understanding the disease, while we have all the information. So, we are choosing to be ignorant. We know how HIV is spread. We know you cannot get it from touching or kissing someone, or toilet seats, or sharing glasses or utensils. But there are many people who still think that it can happen that way. That is bigotry that feeds that, because they do not like the people that HIV is affecting. It is the same stigma that LGBT people face, it just gets wrapped up in the other.”
Can you give a personal message to Ukrainians with AIDS or our LGBT people?
P.S.: “I think the ones I have met I am in awe of, they have amazing bravery, they are incredibly creative and determined. They have a long, hard fight ahead of them. But I am absolutely convinced that eventually they will win, that they are on the right side of history. And I do not know whether full equality will come to Ukraine in 5, 15, or 50 years, but I do know it will come. And those who are fighting for it now, will be remembered as heroes throughout Ukraine someday. I tip my hat to them, they are doing amazing work. I encourage those out there who are LGBT, and scared, and in the closet, to try to summon the courage to join this movement if they can, to find others. At least start sharing their experience with a few friends or family. Because coming out is how this movement will slowly snowball. Study after study shows that as soon as somebody knows somebody who is gay, their homophobia can evaporate overnight. That is how we change the country.”
D.F.: “We learned something from the history of the past 30 years, the history of the LGBT movement in the United States. It is that it takes a critical mass of people to make a difference. And Peter is right to say that the single most important move is self-disclosure. And that alone is what the AIDS activists did that made such a difference. First, to stand up just to be identified, and that identification affected the people who already loved us, and moved their hearts. And that began as a kind of cascade of social acceptance that has just been phenomenal, including in the past year – the changes in American cultural and civic life have been transformed. There is something transformative about truth. And the minute the world acknowledges it, we move forward.”
It will take a lot of bravery.
D.F.: “We unfortunately were not given the opportunity to stay in the closets after the AIDS hit. We did not want to be in those closets in the first place – they put us there. They built the closet, they put a door on it, and they devised a latch, and they had the key. And getting out of there for people was very, very tough in the old days. And when HIV stalked us, suddenly, those closets just disappeared. And as disorienting as it was for us, we were like prisoners who were freed from an isolation cell. The 1980s were a very peculiar time for us. And what I mean by the closet disappearing, is day after day you pick up a newspaper and you read the obituaries, and it was gay man, after gay man, after gay man. We could no longer hide, because the virus found us and made hiding both impossible and not practical. And although it was something we have never chosen, we had to re-orient ourselves in the public eye. And I think it made a huge difference. It was an interesting time.”