HIV in the Classroom: Making AIDS Activist History a Part of U.S. History

A Conversation With Jim Hubbard, Co-Director of the ACT UP Oral History Project

HIV in the Classroom

Do you think the general U.S. population just "got used to AIDS?" No, of course not. "It wasn't a passive process, and they weren't nice about it," recalls filmmaker Jim Hubbard; "This country had to be forced to deal with the crisis." And activist groups like ACT UP (AIDS Coalition to Unleash Power) were at the forefront of America's earliest education about AIDS.

Fast forward a few decades, and Hubbard -- director of the gripping 2012 documentary United in Anger: A History of ACT UP -- along with renowned author and academic Sarah Schulman, are the two people behind the ACT UP Oral History Project. Since 2001, Schulman and Hubbard have been preserving the history of the influential AIDS activist group, and working to push this rich chronicle into its rightful place in mainstream U.S. history -- as a justice movement as significant, and vital to explore, as the feminist movement, the African-American civil rights movement and the LGBT rights movement. The creators of a series of over 150 interviews with original ACT UP activists, they've put ACT UP in the halls of the New York and San Francisco Public Libraries, inspired Palestinian activists, and ignited a new generation of students who didn't know you can fight the system.

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Jim Hubbard
Jim Hubbard

Can you give us a quick "oral history" of the ACT UP Oral History Project?

Actually, the ACTUP Oral History Project is my day job. It took me 25 years to figure out how to do it, but I'm paid to be a filmmaker. Not getting rich, but it pays the mortgage and buys food.

The ACT UP Oral History Project began in June of 2001. It was the 20th anniversary of AIDS. I got a frantic phone call from Sarah. She was in L.A., she was driving in a car and listening to the radio and heard this radio broadcast that was in commemoration of the 20th anniversary of AIDS. Essentially, it said, "At first, Americans were upset by AIDS, and then they got used to it."

Sarah said, "We have to do something about this incredible erasure of the entire history of AIDS activism, and the work of those thousands of people who forced the U.S. government to deal with the AIDS epidemic, and changed the way the mainstream media portrayed people with AIDS and the epidemic, and got AIDS into the consciousness of Americans." It wasn't a passive process, and they weren't nice about it. This country had to be forced to deal with the crisis.

We started talking about it and decided that the best way to preserve and to tell the history of AIDS activism and ACT UP -- I think we decided to focus on ACT UP because we were involved and it was the most effective of the AIDS activist groups -- was to let the people involved tell their own stories and their own history.

One of the most important tenets of the AIDS activist movement is that people with AIDS and people in the trenches fighting the epidemic with them were the true experts on AIDS. So, we created this mechanism for them to tell their own stories. We've done 154 interviews now. They range in length from an hour to four hours long. There are complete transcripts and short video clips from 108 of the interviews on the website,, and ultimately all the interviews will be up there. In fact, all the video of the interviews in their entirety will be on the Internet for anyone to view.

Whose interview was four hours? Whose was the longest?

There is kind of a tie for longest interviews. Richard Elovich, Maxine Wolfe, Tom Kalin, and Avram Finkelstein, and Zoe Leonard is kind of a close second. There are a number of people who just have so much to say. That's the amazing thing about these interviews, is that they are continually fascinating. There's always new information, and they're not padded. It's just filled with information, with stories, with analyses of what happened. It's just an incredible intellectual process.

One of the things I read on the ACT UP Oral History Project's website is that you're both in the New York and San Francisco Public Library Systems. How did you get into those library systems?

JH: Let's start with the New York Public Library system. I had a relationship with the New York Public Library (NYPL) because, around the period of 1995 to 2000, I put together a collection of AIDS activist videos for the NYPL. This was from an idea of Patrick Moore's. Patrick thought there was all this amazing footage that was sitting in people's closets and under people's beds that needed to be preserved. The history of AIDS activism was on this videotape. At the time, he was the head of the Estate Project for Artists with AIDS, and he got the funding and made the connection to the library.

And I -- well, I did two things. First, I actually did a survey to find out where the best place for this material would be. And, in talking to archives and libraries and museums around the country, I found that there was only one institution that could deal with the material, and that was because there was a huge amount of material. And also, there had to be an interest in gay-related and AIDS-related material. And that place was the New York Public Library. There were over 1,000 hours of AIDS-related video material. One filmmaker alone, James Wentzy, had over 750 hours of videotape. That's a huge amount for an institution to deal with at one time. They really wanted it and they were interested. So, we had that relationship.

And then, when we started doing the interviews for the ACT UP Oral History Project, I went to William Stingone, who is the curator of the Division of Archives and Manuscripts, who asked if we wanted to donate the ACT UP Oral History Project to the NYPL. And that's because as a filmmaker who's been dealing with the preservation of video for a long time, I knew there had to be a preservation aspect built into the project. We have this sense that film and video will always be here -- and that has been made even a stronger feeling with the Internet. You know, you can turn on your computer, and you can find any movie on there. But the stuff is actually very fragile and needs to be taken care of properly or it won't last. So, we needed to find an institution that would be around in 100 years and would take care of it. And the library was very generous in offering to do that.

The situation has changed quite a bit, because the ACT UP Oral History Project has now been acquired by Harvard University. The tapes that are in the New York Public Library will stay there, the tapes that are in the San Francisco Public Library -- those are actually only access tapes, they're not archive material -- those will stay there. All the original tapes and archival copies, the hard drives on which we've captured all this material, all the ancillary audio and visual material, will go to the Harvard College Library and will be preserved there. And they've promised to put all the interviews on their servers so that they will be available to people.

How has the ACT UP Oral History Project worked with schools to initiate AIDS activism history education?

We know that lots of schools are using it. I wish it were, in some way, more systematized. We're producing this raw material, and our hope is that people will use it in lots of different ways. We know that it's being used in history classes in Yale, in Harvard; Debb Levine wrote her Ph.D. thesis on the ACT UP Oral History Project at the Department of Performance Studies at New York University (NYU). It's being used in classes at Simmons College, geared towards nurses. I just did a screening of United in Anger at Samuel Merritt University in Oakland, Calif., which is a university that's geared toward medical education for people in the medical field.

I've done a couple of presentations in high schools classes, and the film has been shown in many high school classes. I get emails all the time asking questions about the material from students who are writing about it. We know that it's being used, but we don't have a systematic way of tracking it. But we know that over 100,000 transcripts have been downloaded from the website. I haven't looked at it recently, but there were 35,000 to 40,000 views on the website. People from all around the world are reading the transcripts and looking at the video tapes.

What do you think are some of the ultimate goals of the ACT UP Oral History Project? What is the end that you're working toward?

think the end point is to put ACT UP into mainstream U.S. history. Here are the most important civil rights movements in the United States -- you had the African-American civil rights movement, the feminist movement, the gay movement, and then there was the AIDS activist movement. So it belongs right there in the middle.

It really changed the way this country dealt not only with people with AIDS, but people with all diseases. It fundamentally changed the health care system in the United States -- as bad as it is, it would be much worse. It changed the way people dealt with their doctors. It changed the way funding was allocated for research for all diseases. It changed the drug approval process in this country. It fundamentally changed the way Americans look at queer people. Those things alone are an argument for it being part of U.S. history. If you have a class on the history of the United States of the 20th century, or the second half of the 20th century, it should include ACT UP, whether at the high school or college level.

I should add that, in terms of United in Anger, we have a study guide that's specifically designed for classroom use. The coding is not quite finished. It's in beta on the website. That's about to go up; and the educational DVD of United in Anger is available, so schools can buy it.

You and Sarah have been working together on this project since June 2001. She's a university professor, you a filmmaker. How do you work as a team?

The way it's set up when we do interviews is that Sarah asks the questions. James Wentzy is our cameraperson. He's been involved in ACT UP since 1990. He's the one, if you remember, that has 750 hours of footage. He's one of the unsung heroes of the AIDS activist movement. He just has this incredible archive of material. And so he does the main camera. And I actually have a secondary camera through each of the interviews, and I do all the office work.

How do you find everyone for the interviews? Is it more connections? Do you rely on friends of friends who were in ACT UP?

Well, we do. But it's also self-selective. Anyone who wants to be interviewed, all they have to do is send an email to and get on the list. We've done 154; we have interviews scheduled for early next month. We have about 80 people on the list waiting to be interviewed. We're hoping to get through that backlog in two to three years. Anyone can be interviewed, it's entirely self-selective, but it will take a while before we get to you. [laughs]

Do you fly out all over to do them, or do people come here?

We interview people in their apartments. The vast majority of them have been in New York City. We've done a number of trips. We've gone to San Francisco and L.A. a couple of times. We flew down to Tennessee to interview people. We interviewed Larry Kramer up in his house in the country, in Connecticut. There are a couple of other people who have moved out of the city. But, it's ACT UP New York. We felt that there was only so much we could do, so we had to focus it.

Also, we felt that, while ACT UP was a national and international movement, it was very much locally based, and we have encouraged and helped people in other cities to start doing oral histories of ACT UP people and other oral histories, as well. Just for instance, the situation in San Francisco is so complicated, that someone in San Francisco should do that. We're not ethnographers, we're not historians, we're not anthropologists. We are members of a community preserving our own history, so it's important to stay with that history. But, definitely, we help and encourage people to do it in other places, as well.

I think it's very important to have AIDS activism as part of American history, and to do it through individual interviews and speaking from your own experience, your own standpoint. If AIDS activism history was implemented on a universal scale, though, I would be so nervous about the way it would be taught in schools, if it weren't from the mouths of people who were involved.

Yeah, history's a really tricky thing. Depending on who writes it -- and that was another impetus for doing this project. People were starting to write about ACT UP and they were looking in the wrong place for materials. Sarah always talks about someone who was using ACT UP who was using the New York Times as a primary source. And the New York Times would be a horrible place to go, especially for the early days of ACT UP, because it was so antagonistic toward ACT UP, toward AIDS activism. Its reporting on the crisis was very problematic in the beginning. And, so, you know, that's not the place to go. That's a very distorted history that people get from there.

Just recently, it was nice to see AIDS activist history in the papers around the death of former New York City mayor Ed Koch. That was one of the few issues where the mainstream media had picked up that he had missed the mark on so many big questions.

Oh, yeah. I was in San Francisco at a showing of United in Anger when he died. And there's so much in the film that's an indictment of his administration, just its evil, negligent dealing with the crisis. I was horrified at the way his death was treated, and how he was being made to look heroic because he led New York out of the fiscal crisis of the '70s. Which is not exactly my memory actually, even on that. I think that, as much as he's maligned, that the solution to the fiscal crisis was set in the previous, Abe Beame administration, and Koch was the beneficiary of that.

He was a horror. He wouldn't deal with the crisis, he had no sense of urgency, they were shutting down hospitals, so there were not enough beds. One of the worst things that happened under the Koch administration was how he ordered the head of the New York City Department of Health to halve the number of people with AIDS in the city in order to make it look like they were doing a better job or that they needed less money. It was just monstrous. And the obituaries did not deal with that, or dealt with it in a very cursory way.

What are some of the other places besides the U.S. that you've shown the film?

In two weeks, we're going to Abu Dhabi and Beirut. NYU has a campus in Abu Dhabi. We're doing a whole day in the classroom and screening the film.

The first place outside the U.S. that we showed it was in Ramallah, actually. It's the capital of Palestine on the West Bank. It was amazing, because it was an audience that didn't get to see that sort of material before. The one straight guy in the audience said he had never seen a film where gay people were portrayed positively. Another woman said that she was so inspired by a group that spent years and years using every strategy and tactic they could think of and constantly changing their strategies and tactics in order to achieve their goal, and she saw that as analogous to the Palestinian struggle. That was really great.

I was recently in Stockholm, sort of the opposite end of the spectrum. In Sweden, they're having a national conversation about the AIDS epidemic, because the most famous gay person in Sweden just published a book, a trilogy that isn't quite finished being published, that's about the AIDS epidemic, and I'm told that it's really good about the emotional aspects of the crisis. But, he either completely ignores or is bad about the politics of it. So, it's fostered this conversation about what went on in Sweden and the rest of the world during the height of the AIDS epidemic. So the film was perfect for furthering that conversation.

I've shown it in Berlin at a screening that was arranged by a group of students at Humboldt University. So, there are a lot of universities that are showing the film. I had never heard of Ruhr University of Bochum, which is one of the largest universities in Germany. It's very far in the West, in a city called Bochum.

Was ACT UP Oral History Project involved in the making of How to Survive a Plague?

Not the Oral History Project; but David France, the director of How to Survive a Plague, and I have been friends for many years. We were actually roommates in the '80s. We knew that we were both making films, and we knew from early on that they were going to be very different films. We were looking at the same material in the library.

It's hard to describe it. We sometimes worked together, but mostly they were separate efforts.

Regarding Palestine -- it's so interesting that they saw a parallel in their struggle. Are there any other people who have come to you and said that there are other instances where the story relates to them in some way?

Definitely. When people ask me what I had in mind when making the film, the first thing I tell them is putting AIDS activism and ACT UP into mainstream U.S. history. And the second is to inspire additional activism. I said that from the very beginning while I was making the film, but I had no idea whether it was actually possible. It was definitely a leap of faith. That screening in Ramallah was the test whether other people -- people who were far removed from the situation and place -- would be able to see a model in ACT UP for their own political actions. So, that was incredibly gratifying.

That's happened other times. For instance, I showed the film in Brazil several times and an AIDS activist group in Brazil sort of took it on and have been using it in organizing. They've been showing it and using it as a platform for talking about how AIDS activism should be done in Brazil in the year 2013.

That's happening in Canada, as well. AIDS Action NOW in Toronto is using it for organizing. We always considered AIDS Action Now part of ACT UP. ACT UP in San Francisco -- people there just started a new chapter, and they are looking to the film for inspiration.

We're also doing an academic study guide for classroom use, but we're also doing an activist study guide, as well, so that people can use it to teach people how to organize.

What are some of the different reactions you get depending on what generation is watching the film -- for instance, high school classes full of students of color?

High school students have never heard of this by and large, so they're amazed that it took place. And the general reaction is real excitement. It's the idea that "Oh! Wow! How can we do this for our issues?" That is the basic reaction of young people.

Older people have different relationships to it. It's a reminder of what they did or what they went through in the late '80s and the '90s. So, it's a way for older people to think about their past. I guess radical political action is usually the work of the young, but there's still older people who are doing it and can get excited to think about it.

I always say that ACT UP arose because of the zeitgeist. I believe in these waves of history, and at certain moments, movements arise because they're necessary and there's an infrastructure that supports them. They rise and they lessen in their effectiveness. To me, the people who do the political work at those moments in between when it's not so glamorous and exciting and effective are the real heroes. They're doing the hard work to keep things going until the next moment when it will erupt.

Also, it's really important to me that the nuts and bolts of organizing are an essential part of this film. I don't know that there's another film on any movement that really talks about or shows the things you have to do to make activism work in the way United in Anger does. That's why I think that, as a film, it will continue to be important. It is about a specific movement, but it has so much information in it that is applicable to any other grassroots political movement.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for and

Follow Mathew on Twitter: @mathewrodriguez.