The Real Heroes: On HIV/AIDS Activists in 1980s Chicago

During the height of the HIV/AIDS crisis in the 1980s and 1990s, my mother Deborah Steinkopf was a nonprofit leader in Chicago, spending her days advocating for those living with the illness and her spare time attending many of their funerals. While reading The Great Believers, Rebecca Makkai’s fictional account of this era, I kept thinking about my mom. The skills she gained building organizations from the ground up inspired her career running nonprofits focused on issues ranging from domestic violence to immigration legal services. As my mom embarks on her own nonfiction project on this era, she and I talked with Makkai about how she captured this history, how activism has evolved, and the long-term impacts of community trauma.

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Hannah Steinkopf-Frank: Mom, how did you become involved in HIV/AIDS activism?

Deborah Steinkopf: I was working in the New York state legislature in 1988. I wasn’t sure where I wanted to live, what I wanted to do. I was the Women’s Health Policy Fellow with the legislative women’s caucus and thought I’d work on domestic violence legislation. They redirect[ed] me toward women’s health issues. It’s 1988 and the epidemiology rates of HIV infection among women were skyrocketing in New York City. It got a lot of attention and became my project.

The average life expectancy of women diagnosed with AIDS at that time was less than 12 months. Women didn’t know they had AIDS. They were getting sick, going into hospital and never coming home. We had to do emergency stand-by foster care bills, emergency appropriation bills to get some service infrastructure for these women and their kids. It was such a heady time that I thought, “I need to work on this.”

I have master’s degrees in social work and public policy, so I had two career pathways. I decided on community-based social work. I thought I’ll go home because everything in Chicago in terms of epidemiology and the development of programs and services was at least three years behind the coasts. There was no infrastructure in Chicago, especially for women impacted by HIV. I walked out of a networking meeting with a part-time associate director job at Chicago Women’s AIDS Project. I was 25.

It was 1989 and I was the second paid staff person. Everything we did was building from scratch. It was intense. I worked 60, 70 hours a week. I saw children die. I saw women die. I saw women being resilient, strong and incredible. Many women were recovering addicts. I met so many people managing this disease while also living in poverty, also were people of color, also had no resources. I remember there was a scene in the book at the Cook County Hospital and the nurses wore face masks.

Rebecca Makkai: What’s funny about County is they had incredible research going on, but the actual free clinic, the free beds, the lights never turned off. The nurses rotated through from other departments and didn’t particularly want to be there. There was incredible treatment being done, but at the same time the 1990 Act-Up demonstration I wrote about was to get beds for women even though there were 15 beds for men lying empty.

DS: I remember that demonstration. You captured it well. That week I was writing a CDC grant to get a prevention education program funded. I couldn’t make it down, but I heard about it because some of my clients were involved in the Act-Up women’s caucus. One of our clients spoke, which was one of the first times she was out about her HIV status. She was a poor, women of color. All of a sudden she was somebody because she had experience and told her story.

RM: One of the strange conversations I’ve had in the wake of publishing was with someone who worked at the American Medical Association and watched the protest from inside the building, like being protested against. She said she was really with the people in the street, but her boss said, “You can’t interact. You can’t go out there. You can’t wave. You can’t do anything.” She’s sitting there, watching from inside, which wasn’t a perspective I had when researching.

HSF: Who were some of the people you interviewed?

RM: Lori Canon. She’s still running this grocery kitchen for people with HIV, Vital Bridges. She wanted to meet there because she had work to do. She wanted to be there if any clients with dementia came in not knowing it was the day they were closed. She had to be there because it was closed in order to tell people it was closed.

DS: Yes, oh my god. Did she talk to you about Danny?

RM: Yes, absolutely.

DS: It’s been 30 years since he died and she’s still holding that torch for him. Danny Sotomayor was this amazing activist. He was the driving force behind Chicago’s Act-Up and was a cartoonist.

RM: His partner Scott McPherson was a playwright who wrote Marvin’s Room, among other things. It was funny because I found myself in this position as I was researching and talking to people where information was really fresh in my mind. I’d try not to be obnoxious because obviously I wasn’t there. But I had this factual knowledge even as I didn’t have the textural contextual information.

DS: That must have been really cool doing those interviews after all of that research and having the subjects authenticate everything and probably breathe some life into it.

RM: Yes. I was trying to do interviews as soon as I could, but it took a while to work my way into the inner circle of Chicago activism. It took some searching to find people who’d been HIV positive since the early 80s and lived here then and are still around and willing to talk. Of course, I was expecting there would be books, like some big nonfiction books about AIDS in Chicago. There weren’t.

What I did instead was I read every back issue of the Windy City Times (a gay alternative magazine) from 1985 to 1992. It was really educational. When I started talking to people, it helped that I was conversant beyond lay knowledge of the epidemic itself. I was conversant in the details of Chicago, the bar scene, the activism, the various protests. As much as I was trying to get information from people I was also trying not to write about real people.

HSF: What was it like writing the book during our current political era?

RM: I was writing this book from 2013 to 2017. It was a very interesting political time in our country, as it continues to be. I learned so much about self-maintenance from these people I talked to. On the one hand, I was talking to friends who were going out for the Women’s March, as was I. Everyone was online saying, “Oh my god how are we going to survive? How are we gonna keep fighting for four more years. I’m exhausted. I can’t keep this up.” I’m also interviewing these people who say, “Wow, we’ve been fighting for the past 32 years while in the midst of chronic illness. I lost all my friends. We were out there every day.” You think, “Okay. Clearly there’s gotta be a way that this can be done.”

One of the things that amazed me was in so many cases, these people who became such incredible activists had no background in anything remotely like this.

Chicago Mayor Richard M. Daley did a near 180 on these issues largely because of Danny Sotomayor and other people in Act-Up who got in his face every day. They snuck into black tie events and got on stage with a bloody handprint banner and embarrassed him in front of his rich friends or they found him on the sidewalk. He ended up at least paying attention and supporting some good policies, whether or not he actually changed on the inside. Through their activism, they had a measurable effect on this mayor and his very powerful control of the city. I think that mattered more in Chicago.

DS: That’s the piece I’m interested in exploring. I’ve talked about writing a full-length manuscript for about ten years. I’m interested in what happened to people who got involved in this work, sometimes as activists, and then moved into social service work. How did that shape their perspectives and professional careers? Because that’s where I got all my early nonprofit experience. That was the pace I was used to, the sense of urgency, which motivated us to get stuff done.

By the time I was in my thirties and forties, I had done media and press relations. I wrote grants for the CDC and got them funded. I did volunteer recruitment and management, program development and evaluation. I interacted with elected officials. I had this incredibly well-rounded skill set and I was fearless about anything related to nonprofit management.

RM: One of the things that amazed me was in so many cases, these people who became such incredible activists had no background in anything remotely like this. Danny was waiting tables and was a cartoonist. He was your leader. There was also Billy McMillan.

DS: He was fighting for his life. He was one of the activists who understood that Act-Up needed to open up its thinking and its membership to perspectives beyond gay men. He was wonderful about bringing clients from the Chicago Women’s Aids project into conversations and centering their voices. He didn’t have training in political organizing or community organizing. We didn’t have the framework we have now around diversity and equity and inclusion.

RM: It was a tricky thing to write about. I wanted to bring in this 21st-century perspective on intersectional politics and inclusively, partially in people’s politics and in my cast of characters. But if I wrote a scene and they’re having meetings with trans people and women of color, it wasn’t necessarily accurate. I’m not going to give my characters the most diverse possible group of friends just because that’s what we’re looking for in the 21st century, as much as I want to. It was an ongoing debate for me. Ultimately, I had a few characters who were thinking about that stuff and fighting. I had this commitment to realism that prevented me from including a broader, more diverse cast of characters. But at the same time, you write a book and your job isn’t to represent everything. Your job is to tell one story.

HSF: Parts of The Great Believers takes place in 2015 as the character Fiona looks for her daughter in Paris. What was it like reading those sections as someone who carries the loss of so many people with them?

DS: I liked Fiona’s character because she was shaped by these early experiences in her twenties of being put in the role of caregiver, not only of her brother but also his friends, people she dearly loved. That shaped her as she grew up, became a parent, and navigated her own relationships and realizing as she was trying to find her daughter, what that meant for her. When reading the book, I thought of the choices I made along the way around self-preservation. I left the Chicago Women’s Aid Project to run a domestic violence program. Not that that’s an easier mission for a nonprofit, but I needed a break from people dying. I did that for a few years and then became the executive director of BEHIV, an HIV/AIDS organization in Evanston.

But having a baby forced me to compartmentalize. I had to leave my office at 5:00 to pick her up from childcare. Even if I went back for a board meeting, I often took her with me. She was like the mascot. There were all these beautiful gay men on the board who weren’t parenting because gay marriage wasn’t legal and a lot of them were positive. Hannah would be passed around and bring some joy to it. But having my own kid gave me a perspective on what needed to be important to me right then and there, and I left it.

RM: It sounds like you made a self-preservation move in a healthy way. I was interested in that reality and the people who’d been major activists and closed the door completely: I did this. It was a chapter. It’s done. I’m moving on. There’s partly that question of survivor’s guilt, that long arm of grief, but it’s also a question of does other work ever feel that meaningful? Can you move on?

It’s been hard for me to move on to another project, partly because it’s always hard to move on. You’re looking at a completed book. Now I’m going to face this stupid, incomplete, half-baked idea. Every book idea sounds ridiculous at the beginning. It’s not just me getting sick of my own voice, although there’s a lot of that. Being in different cities and hearing different people’s stories and having people pour their hearts out, I’m continuing my research. Talking to you, I’m continuing my research. I’ve become a lifelong activist on these issues. I’ve been invited to do things like speak at medical schools, which was not something I ever envisioned. The Great Believers is taught in medical ethics and hospice care classes. I didn’t know they assign literature. I’m learning a lot of stuff.

DS: But I think you dialed in on a time. Things evolved so quickly with the treatment that the narrative changed quickly. I remember in 1999 having a performance review of a business manager I hired. She told me she loved working there. She’d found her organizational home and loved her co-workers. I realized, oh my god, no one’s died in the last 12 months. She didn’t have to experience that. In that moment, I realized we had rounded a corner.

There was a huge shift within the organization and the activist movements as a result of new treatments. I think what happened with your book for people like me and the medical school faculty who are inviting you to give lectures is we bury that part of the story, the early days of AIDS. People are starting to remember it. For me there’s nostalgia because I was my best self in those days. I fully showed up. But it’s also trying to remember what that all meant, and that’s my project.