Our guests on this episode of Queering Left are long-time activists Mary Patten and Jeff Edwards; both of whom have many years of experience in movements for racial, social, and economic justice. Our focus is on their organizing work in ACT UP (the AIDS Coalition to Unleash Power) Chicago.

Mary Patten is a visual artist and a professor at the Art Institute of Chicago. She is currently involved with the Chicago Torture Justice Memorials project. Mary’s activism goes back decades and includes work in the solidarity with South Africa, Puerto Rico, Black liberation and other anti-imperialist struggles. As a result of an anti-apartheid direct action at Kennedy International Airport in 1981, Mary served one year in Rikers Island Jail in New York.

Jeff Edwards is the staff organizer at University of Illinois at Chicago (UIC) United Faculty. Jeff began his activist work in Minneapolis in the 1980s where he too was involved with anti-imperialist struggles such as ending US intervention in Central America. He began working on AIDS activism while still in Minneapolis and moved to Chicago in 1986.

ACT UP Chicago like many chapters around the country was formed in 1987. It emerged in Chicago from other AIDS activist work like Chicago for AIDS Rights and Dykes and Gay Men Against Racism and Repression (DAGMAR). Mary Patten was one of the founders of ACT UP Chicago and that is where she and Jeff met.

They will discuss how they came to AIDS activism and some of the ways that AIDS activism was informed by their early solidarity work.

Mary: I’m Mary Patten. I’m an artist and a longtime teacher. I teach at the Art Institute of Chicago and [I’m] a longtime political activist.

Jeff: And I’m Jeff Edwards. I’m a staff organizer for UIC United Faculty. It’s the union that represents the faculty at UIC. And I was a member of ACT UP from the late ‘80s to mid-‘90s when we folded. I’m a longtime activist on a number of different issues.

Emmanuel: To start, can you share a story of when you started to identify as a queer activist? Did you start identifying as a queer activist?

Mary: It’s sort of a complicated question…because I identified much more as a lesbian activist, it’s not about debating, it’s not about being problematic with the word queer at all. In terms of “gay liberation” I was much more involved with lesbian feminism that quickly folded into this particular kind of anti-imperialist, leftist orientation. That meant that some of the lesbian feminists, socialist feminists, we worked with characterized us as lesbians from the neck down because we didn’t have a proper lesbian-feminist consciousness because we were too oriented to Marxism and anti-imperialism. But that’s a whole other story. So, let’s stop there.

Jeff: And I would say I’ve got this complicated relationship as well. In fact, in terms of coming into ACT UP, I don’t think there was a sense of that we were queer activists. I think the concept of queer emerged in the context of ACT UP, in the face of ongoing neglect by institutions of power or outright backlashing against queers. And so taking on the queer label is like, you think we’re queer? Yes. Yes, we are. I think also at some point in time that got solidified because the more mainstream or gay politicos in the early ‘90s wanted to closet away AIDS and focus on marriage and military. So I think it was also in defiance of mainstream gay politics. I also always felt ambivalent about it because I think it is always implied whiteness and middle-classness and cis-gendered male. I think even from the beginning queer quickly turned into Queer Nation. At the time that that happened, I was a little puzzled that the AIDS epidemic was continuing. We didn’t have solutions and suddenly people were taking the streets to do more expressive queer stuff. I felt that was coming at a time when AIDS was becoming increasingly racialized. It was obvious to more and more people that AIDS was affecting people of color. Our work in ACT UP was focusing on that and suddenly ACT UP wasn’t queer enough for some people. So I’ve had this ambivalence. I’ve had that ambivalence all along.

Mary: That’s so interesting. There’s just a lot to say. First of all, today, would you think or do you think that queer, the kind of umbrella of queer, is primarily or mostly white?

Jeff: I do.

Mary: That’s interesting.

Jeff: I realize it’s not just that. It’s just too easy to become that or too easy to be that. And I realize people are doing great work and it’s not that. I think when you center queer, it starts to center, gender, sexuality, class, and race. Hope that’s not too sweeping for people but I’m just ambivalent. I called myself a queer activist. I’m not saying that’s a horrible thing. I’m just saying I’m ambivalent about it.

Emmanuel: As a person who does identify as queer, I identify as queer because I think it encompasses race and different types of politics that are outside of the mainstream gay and lesbian dominant culture.

Jeanne: I do think, as history moves, language moves as well. In ACT UP and beyond, we started re-embracing terms like dyke and faggot and sissies and bull daggers and the things that were the “most contemptuous” terms. So, I think your point is interesting, it makes me want to think about it even more.

Emmanuel: What drew you to get involved in ACT UP? How did you come into that work?

Mary: I first became aware of AIDS, I became tangled up in it in terms of a personal relationship and social understanding, because one of the women I was in jail with between 1982 and 1983, her name was Angie Caseras, died of AIDS just at the point at which people were no longer using the language of G.R.I.D., Gay-Related Immuno Deficiency Syndrome. It was hugely impactful for me because I got out before she did. We wrote a little bit. I would send her stamps and she wrote to me and said, “Can you imagine? I have this diagnosis and I’m now in the infirmary.” I knew at that point that was a death sentence that I probably would not hear from her anymore. And that is indeed what happened but there was kind of a little bit of a time gap between that. That was in ’83. And when we, as I mentioned before, Jeanne, Ferd, and other people, we had this sort of small, I guess we call ourselves sort of an affinity group, Dykes and Gay Men Against Racism and Repression (DAGMAR), the right-wing repression, racism, any bad “R” you want to add on to that. So, it’s interesting how the gaps between when you become aware of something and when you can mobilize around something become coherent.

Jeff: I’d say that for me, my involvement began in a very personal way in terms of just fear. Fearing for my own life and those I knew. I remember, I was living in Minneapolis when the epidemic began and not feeling very aware of it. And there was a rally one summer in ’85 or ’86. I can’t remember exactly. Some state legislators were there. The publisher of a local gay paper, Tim Campbell, who was sort of the local Larry Kramer, proclaimed, “Everybody here tonight at the end of the decade, you will either be dead or know somebody who is dead.” And the audience was mostly people in their 20’s and 30’s. That was a big moment for me in terms of awareness. And then, of course, a lot of anger about how the right-wing and the whole Reagan era period, were making use of AIDS as a way to bash queer people. A real moment was in ’86 when the Supreme Court gave their decision in Hardwick vs. Bowers, where they said there is no right to homosexual sex. I think that’s the language they used. The Chief Justice, in his separate opinion, actually linked homosexuality to AIDS. Therefore, it shouldn’t be legal. That was, I think, really the thing that lit things on fire and I got involved right after that in planning from Minneapolis to go to the March on Washington, which that year was called the March on Washington for Gay and Lesbian Rights but it was really about AIDS. It was led by people with AIDS. I was working on a documentary crew, following the whole march and seeing from the front to back people with AIDS in wheelchairs. I could see the quilt on display. After that, we started doing some organizing in Minneapolis, the Minnesota Alliance Against AIDS, I think was the name. And shortly thereafter, I moved to Chicago. I saw a sign for a meeting of this new group called ACT UP. And that’s how I found my way to ACT UP Chicago.

Emmanuel: No movement is purely about one issue. We’re talking a little bit about intersectionality. How would you describe the ways in which ACT UP’s organizing was intersectional?

Mary: What I remember is that we did not have that language. I know that sounds like a contradiction with what I said before about, say 10 years earlier, having internalized some of those concepts and being taught by women of color, mostly lesbians in New York. But we didn’t use that language. However, there were very few People of Color who were involved as activists in the group. Over time, we got to know, particularly women of color who had been diagnosed with HIV/AIDS and were willing to take the risk to come out as such. They came from a kind of different sort of orientation as us. They came into the work as people who were directly affected and fighting for their lives, not an activist kind of background. Of course, that’s true of a lot of the people who joined ACT UP who had no activist experience at all because it was a primarily white, cis-gendered male group. Some of the people had been involved with DAGMAR, as well as some other White people considered ourselves anti-racist and that was our responsibility to struggle against racism in all its forms. And that, of course, meant very concrete things: About who gets represented? Who do we imagine as people who were affected by AIDS? I remember one of the things we did for the ’87 march was we made a banner that was the map of Africa with targets on it. I’m not sure how graphically great that was, thinking about it now. The point was asking who’s most at risk in terms of AIDS. Then there was the People of Color caucus that emerged out of ACT UP. It was small but I would say powerful. There was a kind of alliance between what also emerged as the women’s caucus and ACT UP. So rather than the language of intersectionality, I think that there was a commitment to anti-racism and that was tied to a more structural analysis of the AIDS epidemic and the kinds of horrible, horrible reactions, positions, and policies that weren’t just vindictive but were murderous by the government and by all kinds of powerful voices in the culture. I think that some of us were pushing to look at a national health care agenda. At first, it was a matter of fighting for sheer survival and fighting against the worst kinds of injustice. I mean, people are talking about quarantine.

Jeff: I think it’s worth saying that we didn’t consider ACT UP to be a gay group. We were organizing around an issue and I think that helps facilitate more intersectionality. Most people were queer but we were organizing as AIDS activists and I think that’s important for people to know who maybe don’t know about this movement. Oftentimes, the media would report “Gay activists are out in the streets” when we were AIDS activists, but they saw what they imagined were gay people and characterized it that way. But we were insistent that we were just a group of people committed to ending the AIDS crisis through direct action. I think that’s important to note. I don’t remember the word intersectionality being used but I do think, in my experience, the women’s caucus was a powerful force in making sure that issues of gender, race, and class were foregrounded in the work. They built relationships with women and took the lead in our prison activism. So I think the women’s caucus was crucial in that work.

Jeanne: Only thing I would add is I think intersectionality, as everyone has said, didn’t really exist as we speak of it that way. And I would just say it wasn’t universally popular in ACT UP, right?

Mary: Sure. Yeah because I think the language that we used was the language of solidarity.

Emmanuel: One of the ways that I got introduced to ACT UP was through the imagery that has come out over time. ACT UP is known for its powerful and controversial direct action tactics. Could you share a story of planning an action and what inspired the idea for those actions or those tactics?

Jeff: I’m thinking of the April 1990 actions for health care. I mean, it was the biggest thing we did. It probably took a year to organize. It centered women of color, low-income health care. So it represented an intersection. We didn’t call it that then but it is what we could call our intersectional work.

Mary: It was the outgrowth of work with other chapters of ACT UP throughout the country, that was very important for us in Chicago, Los Angeles, and San Francisco, to build this National AIDS Coalition to Organize and Win, Act Now, together with New York. We could claim a multifaceted national coalition which was rural as well as urban. So many chapters were involved in building towards this action, the national actions for health care. It represented all of the creativity and intelligence and joy and smarts of all those people and lots of different perspectives. It also targeted the American Medical Association, the insurance industry pharmaceuticals, and the public health care system. In particular, the target was Cook County Hospital and the fact that although there was an AIDS ward, which provided extraordinary care, but they didn’t have the capacity and the money to build a separate bathroom for women. So part of the ward was empty with these beds, empty beds, and women were not being served in that way.

Jeff: And at a time when you could go into Cook County Hospital and there was some personnel there who didn’t want to deal with you because you had AIDS. So people would be in wards where they could be neglected, not just not getting the best care possible, but neglected.

Mary: Right. There were some great doctors, medical people who were great advocates, wonderful advocates for people with AIDS and who we talked to and worked with. So the county administration was the target. We did have an imaginative action. the Women’s Caucus and the People of Color Caucus created and led this action and we dragged 15 old mattresses through the alleys in downtown. How did we manage to do this? Because the police were on us in this demonstration. People had already been arrested at that point, but somehow we did. I think they just didn’t expect it.

Jeanne: They thought it was stagecraft because we had taken the mattresses and put fitted sheets on them that said, “women die faster”, “health care for all”. So the mattresses had slogans on them. And mattresses which were stashed in convenient locations.

Mary: It’s a really important point about how art can be the kind of a Trojan horse in a way.

Jeanne: The goal with the mattresses was to create an AIDS ward in the street right outside the county building. So we knew that the final location for the action was the county building with the banner drop from the county building balcony. It was sort of a classic march through the loop with stops along the way and different humorous actions or die-ins or people dressed as doctors and doing street theater. And this went on for, I don’t know how many how long it went on. Hours, it seems.

Jeff: I mean, all morning and into the afternoon

Jeanne: The action was in the afternoon. So then the culmination was this creation of the AIDS ward on the street, where we dragged out these mattresses and women lay down on them and the People of Color caucus surrounded the women and the people with AIDS in the beds. They had to sort of have the first line of defense against the police.

Jeff: And there was a weekend of things happening when people came from around the country including a vigil in the [Cook ] County Hospital.

Jeanne: There was this stage and many kinds of performances: drag performances, humorous performances, less than humorous, not so humorous.

Mary: The other significant thing is that it was a couple of days later when the county opened that part of the ward. So it’s very rare when I can identify in my experience, a kind of concrete victory. And which is not to say that people weren’t hurt. The police were brutal. A lot of people were arrested.

Jeff:Which we planned for. It was supposed to happen.

Emmanuel: Other groups that we’ve talked to on this podcast talk of being inspired by some of the tactics of ACT UP. I’m curious who inspired your tactics? Where did those come from and how did you reinterpret them?

Mary: I do think we were queer activists. We very much embraced a campy sensibility that kind of went hand in hand with the reality that we were taking care of our comrades and friends and lovers who were dying. So those things existed very close in time. I think that some was a kind of collective invention of the AIDS activist movement, of the ACT UP’s, that these different sorts of clashing sensibilities where there was crazy, goofy, joy, and comedy.

Jeanne: “Your gloves don’t match your shoes you’ll see it on the news.”

Jeff: We said that to the police because they were wearing rubber gloves because [it was thought] we had AIDS.

Mary: Some things were new, but there were other things that we were aware of. Like the use of masks in the demonstrations and movements in Argentina and Chile around the deaths of the “Desaparecidos.” The political funerals in South Africa, which were very powerful, have had a direct impact, especially in New York, because people in New York and D.C. organized these political funerals with the remains of people who died from AIDS. Folks would ask for their ashes to be thrown on the White House lawn after they died. Those are some very visual and political examples of the way that performance and props and graphic language stood in for struggles against genocide and political repression. There are probably other examples, too.

Jeanne: Well, the one example that I would raise, which I think is really important, is the research and the teach-ins. Teach-ins had been used in the civil rights movement. They’ve been used in the movement against the Vietnam war. I think the feminist health movement was really important. I think a lot of lesbians who were involved in ACT UP had been involved in the feminist health care movement. So, creating your own health clinics and a self-exam and the research into drugs and research into “Our Bodies, Ourselves” and the stuff that grew out of that. That kind of very rigorous looking at the issues so that people in ACT UP became experts in the treatment and in looking at data and teaching each other how to understand epidemiology. I think the feminist health care movement was really important.

Emmanuel: The Stonewall uprising and the organizing that followed, for example the Gay Liberation Front, was a moment of hope and power. How did the AIDS epidemic change how you understand organizing for liberation?

Jeff: I told Manny when I came in today that this is a great question because nobody asks that question anymore. And that really the right has appropriated the idea of freedom as an overarching slogan or concept. While many of us in ACT UP came out of a left political background and maintained that perspective, the focus of it was on the immediate. Eventually, ideas about national health insurance were raised. We were so focused on immediate issues, which were certainly informed by a larger perspective, but I don’t know if my thinking changed at all about how to fight for liberation. In terms of organizing, I do think I’d never seen the sort of what we now call intersectional organizing before and that had a big impact on me. I see that as essential going forward with any organizing work. This larger theme of liberation or freedom, I feel like we were too grounded in the immediate to sort of think about something as grand as that.

Emmanuel: What was the relationship between ACT UP and other organizing campaigns that were happening during the late 1980’s, 1990’s? Campaigns like freeing political prisoners, what was happening in Central America or fights to protect reproductive rights?

Jeff: I think some of the people in ACT UP were already involved in those organizations. I was new to Chicago when I joined ACT UP but I was struck by how a meeting might conclude with announcements of other groups who were doing an action in the Federal Plaza that Tuesday or you can do clinic defense next Saturday. And people were going to these things. I’m in less of a position to talk than you two, but my impression was back in Minneapolis, I was part of these other movements. So the people that were doing AIDS activism were all already doing other work. I think maybe there were some disappointments that we didn’t always get the same level of support back. I think that there was some disappointment that the left was slow to support ACT UP.

Jeanne: I remember we got active in some of the protests that were happening around Jon Burge. But I think you’re right. Different people were involved in different things. I do think that some of us, both locally and nationally, were working very hard on connecting with people in prison who were doing HIV and AIDS organizing and education. Some of us were very involved in campaigns around getting materials and the stuff that those folks needed into prisons. But also some of those folks were political prisoners. And we were organizing and trying to encourage folks in ACT UP to be involved in some of the campaigns around the political prisoners.

Mary: Yeah, I think there was an interesting dialectic between the work that some of the prisoners, particularly women, who were in prison, and political people just like us, were confronted with HIV/AIDS epidemic and how that manifested with even more immediately horrifying ways in terms of how fellow prisoners were getting sick and not getting treated and not having access to any education, et cetera. Judy Clarke talks about what she learned from ACT UP referring to the AIDS counseling and education program that she and others started at Bedford Hills Prison in New York, the maximum-security prison in New York where she was. She refers to learning from ACT UP and not just learning how to do pathways to do that research and so on. There was a kind of reciprocal relationship because as the AIDS epidemic raged on, we were getting more worn out, we took incredible inspiration and leadership from the work that these prisoners were doing. So it’s interesting that one of the last kinds of activist campaigns that ACT UP Chicago was involved in was the AIDS in Prison work. I’m not sure how true that is in other places as that might have had a particularity here and partly because of subjective relationships between some people and ACT UP and some of the prisoners.

Emmanuel:Jeff, you talked about being introduced to this work through the emotional. Mary, you talked about the urgency of the time, that people were dying. People didn’t have access to what they need. There’s an emergency and a loss. People are dying and people’s real ashes are being used as a way to demand changes and for things to happen. So I just want to know, how did you both deal with the complex and intense emotional experience of organizing around illness and death as part of ACT UP?

Mary: Very unevenly. Yes, it was very difficult.

Jeff: I think a lot of it was not dealing with it. Trying to direct it into continuing to be angry, as a driving force. Even the political funerals were angry actions. It wasn’t so much about grieving.

Mary: Turn your grief into anger, which does not allow necessary time for a process of grieving, which Douglas Crimp, who we just lost wrote beautifully about that problem. That there has to be mourning and militancy. We were desperate. A lot of this was happening before there were AIDS service organizations. I mean, Jeanne, you remember when we used to do a shift and take care of Ortez [Alderson] when he was so sick. We had no training and we needed to wash him and move him and everything we did. I remember every touch was producing pain for him. Spoken language was a problem because he was so sick at that point. Even though we sort of had some idea about self-care, care of self, we didn’t practice it. We didn’t know how to, we didn’t have the kind of complex set of understandings that we have now about who takes care of the caretakers because we were trying to fulfill all these roles. I think it’s amazing and good and necessary that we did that. And it’s very hard to translate. Like, how would we do that differently now? I have no idea. When you’re in a very small space of time in which all of these things are necessary to move on, you can’t put aside planning for this action to take care of this person. You just do. You have to take care of the person and do the action. You just don’t sleep.

Emmanuel: Both ACT UP and Stonewall have been canonized in LGBT movement history. What do you want people to know today that perhaps isn’t often discussed or talked about?

Jeff: I can think of a couple of things. Number one, I think it’s important to talk about being part of an organization. You see these events happening, like we just described, the April actions for health care. You could show up and it was spectacular and it took a year to make that happen. Being part of an organization where people with different skills or inclinations come together and work together on a project as part of an organization is crucial. Yes, Stonewall was this spontaneous event, but it was part of a world of what I guess eventually emerged into gay liberation or radical lesbians and there are these organizations that carry out that work. I think about the importance of organization, the importance of a relatively few number of people making a huge difference. The membership of ACT UP Chicago was fluid, but it was basically a tiny group of people. We didn’t feel tiny. I think the first meeting I went to might have had 30 – 40 people. And we had a huge impact.

Mary: So many people have articulated phrases like AIDS is not over. So Visual AIDS in New York which is a great organization uses, the language of AIDS is not over all the time in their work and Greg Borderwitz says the AIDS crisis is still beginning, which is a really interesting formulation when you think about it. It’s a little bit different from AIDS is not over. I think that sometimes people take lessons from chapters like this and say, well, we really now need to learn to take care of ourselves better. And sometimes I think that is a way to discourage the sorts of risks we took and to avoid getting into the kind of messiness of life where you’re actually not able to take care of yourself and where you’re making mistakes. But that’s what I would encourage, try to encourage myself and other people to be willing to do that. If you’re imagining a different reality, I mean, that must be imagined, there’s no map for it yet. And we need that desperately now when we get beaten down by all this data and all this horribleness. Anything that creates a space to imagine possibilities differently and to take risks to be wrong, and to be confronted by other people and take account of historic stuff. That means we’re all responsible, actually, for everything that’s happened in this country.