Thirty years ago this month, activists — many fighting for their lives — took to the streets of downtown Chicago in one of the biggest AIDS demonstrations in history. Here’s how that pivotal protest played out, in the words of those who were there.
By REBECCA MAKKAI
April 7, 2020, 8:53 am
PHOTO: CHRIS WALKER/CHICAGO TRIBUNE
When you cross a battleground and read a plaque commemorating the fallen and the brave, you start to believe you can feel the history in your bones. But what about the unmarked battleground, the one that the next day resumes its role as a city street, an office window, an intersection?
April 20 to 23 marks the 30th anniversary of the National AIDS Action for Healthcare, a weekend of gatherings and rallies that culminated in a massive protest in downtown Chicago — one of the largest AIDS demonstrations ever held. The Chicago chapter of the AIDS Coalition to Unleash Power, or ACT UP, played host to activists who came from around the country to protest increasingly glaring inequities in the way the health care establishment was responding to the AIDS crisis. At a time when the disease was a death sentence, when promising new treatments cost thousands of dollars a month, when insurance companies were effectively redlining gay communities, this massive public plea for fair and adequate health care was nothing less than a bid for survival. The demonstrators’ props were banners, costumes, and mattresses; their motto, emblazoned on T-shirts, was “Silence = Death.” For some, it was their first protest. For others, battling with all they had left, it would be their last.
Like many Chicagoans, I was unaware of the protests at the time. (In my defense, April 20, 1990, was my 12th birthday.) But in the research I undertook for my novel The Great Believers, which chronicles the AIDS epidemic in Chicago, I discovered that our city was home to one of the most important, complex, and effective actions in the history of AIDS activism. The protest brought national attention to the epidemic in the Midwest, shed light on the fact that it wasn’t just young white gay men who were dying, and brought about crucial changes at Cook County Hospital, which, like many urban public health facilities, had lagged in meeting the challenges of the epidemic.
I recently sat down with 10 people — sometimes in pairs, usually one on one — who were there. They range from key players to then-neophytes, activists to academics. Their words bring to life not only their own experiences but also the heroism of those who didn’t live to tell their stories.
The Narrators
LORI CANNON
JEFF EDWARDS
JUSTIN HAYFORD
SAUNDRA JOHNSON*
OWEN KEEHNEN
JEANNE KRACHER
BILL McMILLAN
STEVEN MIGALSKI
MARY PATTEN*
ROBERTO SANABRIA
* Pictured in the 1990s
I. “SOMETHING FRIGHTENING IS HAPPENING”
OWEN KEEHNEN Writer, LGBTQ historian, and bookseller
I arrived in Chicago in 1985 from Quincy, Illinois, and in ’88 I started working at Unabridged Bookstore. People would come in, they’d look fine; they’d come in, they’d look sick; then they didn’t come back.
MARY PATTEN Artist, activist, writer, and educator
I moved here in 1983, after serving a one-year sentence on Rikers Island following an anti-apartheid protest. There I met Angie Caceres, a beautiful Puerto Rican dyke and former NYU student with drug issues. We corresponded after I got out; I sent her stamps. In her last letter, she wrote: “I’m in the infirmary. Can you believe it, they told me I have AIDS.” She died quickly. It was like zero to AIDS, no HIV stage. Angie’s the first link. She’s deep in my heart.
STEVEN MIGALSKI Associate professor of psychology at Adler University
I was such a baby gay. I was an undergrad at Loyola. I was out to three or four of my closest friends. And I’d been going to Pride alone since I was 18. I remember being like, Oh my God, what am I doing here? I was living with my parents in Jefferson Park, a multigenerational home where Polish and Italian were spoken. I just couldn’t come out to them.
BILL McMILLAN Activist and hairstylist
I was born and raised in Chicago. I’d never been political before AIDS touched me.
JUSTIN HAYFORD Director of government and foundation relations at Esperanza Health Centers
I came here for college at Northwestern. In 1990, I was a waiter, and I was making performance art and volunteering at the AIDS Legal Council once a week. I’d walk in and ask, “What should I do today?” I was writing grants for them, newspaper articles, doing deliveries to law firms.
LORI CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
I started driving the Coach bus for all the shows at the Arie Crown in the early ’80s. The headliners, they had their limos. The singers, the dancers, they all rode with me. And where did they want to go at the end of the show? To a club. They looked for a place to dance, meet other gay men.
JEFF EDWARDS Educator and union organizer
When I was in grad school in Minnesota, I knew some people who were sick, but they weren’t close to me, so it was only in the back of my head, until I went to a rally about AIDS in ’86 or ’87. One speaker said, “By the end of this decade, either you’ll be dead or the person next to you will.”
ROBERTO SANABRIA Senior director of the Puerto Rican Cultural Center
At a Puerto Rican funeral, caskets are open, but in the ’80s we began to see closed caskets, which was anathema in our culture. When you dig deeper, you realize the reason is AIDS was devastating our community. I was already working with the Puerto Rican Cultural Center, and in 1988 we created an organization called Vida/SIDA, meaning Life/AIDS. We began as a free alternative health clinic: acupuncture, tai chi, massage. People would come in to talk even when they didn’t have an appointment. When you’re ostracized, finding community is powerful medicine.
SAUNDRA JOHNSON Activist
I was working at the University of Chicago, and I went to a learn-to-row session and ended up rowing for the U. of C. crew. And I can’t swim! I was born on the South Side, OK? But I stuck with it, and I met wonderful people, including Adam Burke, who was involved in AIDS activism. I had read And the Band Played On, and it made me so mad. I told Adam, and he said, “Why don’t you volunteer at the NAMES Project? You know, a big display is coming, the quilt.” I volunteered there the whole weekend. Oh my God, it was transformative.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
We looked at New York, at San Francisco, convinced it’s not gonna be like that in Chicago. Of course we were wrong.
JEANNE KRACHER Activist and former executive director of Crossroads Fund
It started with six or eight of us meeting in [veteran civil rights activist] Ferd Eggan’s living room in ’85, ’86. We were these gays and lesbians who knew each other from the left. We called ourselves DAGMAR: Dykes and Gay Men Against Racism, Repression, and the Right Wing. We’d started hearing about friends on the coasts testing positive. And we read Gay Community News. It was our bible. We said, OK, something frightening is happening. We did a 24-hour vigil outside Governor Thompson’s house; we locked ourselves to his fence. People were doing other things, but a lot of it was candlelight vigils, just expressing grief.
In 1987, the Second National March on Washington for Lesbian and Gay Rights drew over 200,000 people and coincided with the first public display of the NAMES Project AIDS Memorial Quilt. The march also marked the first national coverage of the newly formed ACT UP New York. Chicago’s DAGMAR sent a contingent to the march, calling themselves Chicago for Our Rights and soon changing the name to Chicago for AIDS Rights, or C-FAR. Back home, C-FAR members began meeting in the basement of the Wellington Avenue United Church of Christ. One of them, cartoonist and waiter Danny Sotomayor, didn’t make it to Washington that year, but he went with his best friend, Lori Cannon, in 1988. That year’s remembrance culminated in ACT UP demonstrators surrounding the headquarters of the Food and Drug Administration. When Danny returned to Chicago, he proposed changing C-FAR’s name to ACT UP Chicago, and the vote passed.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
ACT UP New York had such theatrics; smoke bombs went off outside the FDA. Danny was part of the PISD Caucus, People With Immune System Disorders. That day, a sleeping giant came out of him. Listen, he was propelled by rage his whole life. He had a difficult childhood, and his seroconversion [becoming HIV positive] added to that rage. Getting out in the street under the direction of a Larry Kramer, a Peter Staley — this is what motivated him to come home and have C-FAR join with this national activist group.
SANABRIA Senior director of the Puerto Rican Cultural Center
I never would’ve pegged Danny to become a political leader, but he had a meteoric rise, a transformation. He was still naughty, he still liked to party, chase boys — but the energy was amazing. He was half Puerto Rican, half Mexican, so I’d tell him he ain’t half bad.
JOHNSON Activist
After the NAMES Project, I wanted to do something else, and Adam Burke said, “Come to this meeting. We’re trying to lower the price of pentamidine [a drug used to treat AIDS-related lung infections].” I went, and I was hooked.
SANABRIA Senior director of the Puerto Rican Cultural Center
Saundra Johnson was my roommate for two years, and she was one of the only black faces in ACT UP. She was a warrior. The woman was married to ACT UP.
McMILLAN Activist and hairstylist
Some of us started going down to Halsted late at night to pass out fliers. And then our first action was against the CTA. They had these terrible AIDS-phobic ads up, and they wouldn’t meet with us, so we decided to demonstrate. We were young and fresh, wearing new T-shirts because we had a new logo for ACT UP Chicago, which Danny designed. We were overwhelmed by how many people showed up. At Clark and Diversey, we shut down the intersection. We had a die-in. That was my first arrest.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
I went to one ACT UP meeting, and I couldn’t stand it because it was such active democracy that I was like, I guess I’m a totalitarian at heart. I wanted more order. But I was thrilled with what they were doing: chaining yourself to the CDC, closing down the Golden Gate Bridge. So I thought, I’m going to work over here, schmoozing the executives and officials and people writing policy, while they’re outside screaming, which they’d better do, because they won’t listen to us unless they fear their building’s going to burn down. You need both.
SANABRIA Senior director of the Puerto Rican Cultural Center
Some of my friends were supportive of ACT UP, and others would say, “This is too much, you guys need to take a pill.” But none of them wanted to join.
McMILLAN Activist and hairstylist
There was one guy I used to work with at the salon. He didn’t know I was in ACT UP. He told me, “They’re an embarrassment to the community.” He said, “Who’s gonna listen to people like that? They act like maniacs!” And I said, “Well, I’m in ACT UP and I have AIDS. What are we supposed to do? When you beg for meetings, when you ask for bread and all they give you is crumbs? You have to take matters into your own hands.” He died from AIDS.
KEEHNEN Writer, LGBTQ historian, and bookseller
There were people who feared we’d lose everything we’d gained if we weren’t cooperative and nice. But ACT UP would come in and say, “Well, cooperative and nice is killing us.”
SANABRIA Senior director of the Puerto Rican Cultural Center
You had these young white men from privileged backgrounds who felt they were dying, so they had nothing to lose. They had resources, and they’d throw themselves into the face of the police, where brown people and black people might hesitate to.
JOHNSON Activist
ACT UP has always been good at calling attention, whether it’s price gouging or lack of housing or clean needles. We were good at shining a light.
SANABRIA Senior director of the Puerto Rican Cultural Center
They knew how to get on that news camera. Who to put there, what to say, what the backdrop needed to look like.
McMILLAN Activist and hairstylist
There was the core group always doing the work, taking initiative. And there were people who came because they were Danny Sotomayor admirers. Some came because they had AIDS. But people like Carol Hayes, Ferd Eggan, Ortez Alderson [a veteran activist and an organizer of the People of Color AIDS Conference], God bless his soul, they’d been involved in the civil rights movement, the Vietnam War movement. They had experience. There was tension, because a lot of the guys with AIDS, they wanted everything done yesterday. They were scared. And the older people knew that if we wanted to do it right, we had to take our time.
KEEHNEN Writer, LGBTQ historian, and bookseller
Technically, nobody was in charge.
KRACHER Activist and former executive director of Crossroads Fund
Ferd and Danny weren’t elected leaders. They were two people articulating clear positions, and people followed them.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
It’s not like these were professional Underground Weathermen. These were people diagnosed, fighting for their lives. Danny amped it up. He knew he didn’t have a lot of time.
SANABRIA Senior director of the Puerto Rican Cultural Center
People talked about the differences in ACT UP between cities. Chicago ACT UP had more lesbians and tended to be a little more mature. The women in Chicago were powerful. When people started to pass, it was the women who would stay with them. I remember when Ortez was dying [in 1990], there was nothing but lesbians surrounding him. They were an anchor; they held it together.
McMILLAN Activist and hairstylist
None of these women, Jeanne, Mary, Saundra, Debbie Gould, none of them were at risk. Why were they putting themselves on the line for us homos, you know what I mean? If AIDS had hit lesbians, would the gay men have been there for them as much? I don’t know.
KRACHER Activist and former executive director of Crossroads Fund
There was no funding, no nothing.
EDWARDS Educator and union organizer
Mayor Daley got off on a bad foot with the gay community. Early on in his mayoralty, there was a meeting at [Lake View restaurant] Ann Sather where the mayor showed up. It was a disaster for him, and he left in a huff.
KRACHER Activist and former executive director of Crossroads Fund
That’s when my father saw me on TV! He brought my mother in and said, “There’s Jeanne! She’s yelling at the mayor!” And I was not out to him. He gets on the phone and says, “I don’t know why you didn’t tell me. I just want you to be happy.” We had a sweet moment, and then he goes, “But you don’t yell at the mayor!” My dad was a Chicago police officer.
II. “YOU’RE GONNA GET ARRESTED WITH ME, RIGHT?”
By 1989, the number of reported HIV/AIDS cases in the United States had reached 100,000. AZT, a breakthrough antiviral drug approved in 1987 to treat HIV, cost around $8,000 per patient per year; it was the most expensive drug ever marketed. Activists from Chicago had become connected to a national network of ACT UP coalitions and other organizations, and the Chicago cohort began planning a weekend of demonstrations aimed at the city’s concentration of health care businesses. Groups from places as far-flung as New York, California, Texas, and Louisiana got involved, as did many ACT UP chapters from Midwestern college towns.
KRACHER Activist and former executive director of Crossroads Fund
In the summer of ’89, we were strategizing as a smallish group within ACT UP about how could we do a national action in the Midwest — the idea that this has been so coastal, how do we bring folks here and bring other ACT UP groups in? I remember saying, “I grew up in Chicago. I drove up Lake Shore Drive as a kid, and the one thing that sticks out is the Prudential Building — that Prudential sign, all lit up.”
McMILLAN Activist and hairstylist
We used to call that the Blood Money Tower.
KRACHER Activist and former executive director of Crossroads Fund
It seemed we could make an argument for a national health care system that would eliminate all these problems. So as we researched, we came to find the American Medical Association was in town, and they opposed national health insurance. The pharmaceutical industry had some representation here, and the insurance industry, which was redlining.
McMILLAN Activist and hairstylist
If you were single, if you lived in 60657, Boystown — and they targeted occupations like hairdressers, florists — you couldn’t get group health insurance. And if you could, they raised the rates exorbitantly.
SANABRIA Senior director of the Puerto Rican Cultural Center
There were two issues. One was that HIV meds were incredibly expensive, so we were going after the AMA and the insurance companies. The other was that Cook County Health Clinic had opened up this AIDS ward that didn’t have spaces for women.
McMILLAN Activist and hairstylist
If you didn’t have Social Security or insurance, you had to go through the county system, which was busting at the seams. I was a patient at Cook County Hospital, and I used to go to the Sable-Sherer clinic, the first AIDS clinic. At first they didn’t have an AIDS ward. We’d never even heard of the concept. When you got really sick, you got put in what we called the piss wards, because it smelled like urine; the stench would knock you out. Sometimes I felt like I was in Calcutta. It was like, Is this Chicago? Is this America?
JOHNSON Activist
There were lights that hadn’t been changed in decades, paint was peeling.
McMILLAN Activist and hairstylist
A lot of times you didn’t come out. My boyfriend was in that ward. My partner died, and then my boyfriend after him went in to have a port put in and they punctured his lung and he died. He was just a really sweet guy. So we pushed County, and thank God for Dr. [Ron] Sable and Dr. [Renslow] Sherer; they finally created the AIDS ward. The guys with AIDS finally had a one-stop shop where the staff was trained. But the women were still being put in the piss wards.
PATTEN Artist, activist, writer, and educator
There were 15 beds [that could have accommodated] women who were HIV infected or had AIDS, but that ward had been empty, had not been opened, for months, because the county said they didn’t have enough money to build a separate bathroom.
SANABRIA Senior director of the Puerto Rican Cultural Center
To have AIDS, you had to be HIV positive and have at least two opportunistic infections. A lot of women with HIV have cervical cancer. Well, cervical cancer isn’t listed as an opportunistic infection.
McMILLAN Activist and hairstylist
Women were getting pelvic inflammatory disease, cervical dysplasia, yeast infections — things guys don’t get. And many if not most of the women with HIV had kids. They had a double whammy and they couldn’t get Social Security because they kept saying they didn’t have AIDS.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
We used to say, “Women don’t get AIDS, they just die of it.”
SANABRIA Senior director of the Puerto Rican Cultural Center
So there are women literally dying, no health care, can’t afford AZT. It was god-awful. And it specifically hit the Puerto Rican community hard, because we have more female single-parent homes, so if the mother has HIV, the whole family is just ... With a white man it was awful, but not the same degree of awful.
KRACHER Activist and former executive director of Crossroads Fund
We’re sitting there in Ferd’s yard, going, “OK, the Cook County thing is compelling, but how do we get all these national groups to come? Because that’s very local.” We envisioned this thing that would go to multiple points and encompass a lot of different ideas about what we were all fighting for, including a cure, because it was always about a cure.
SANABRIA Senior director of the Puerto Rican Cultural Center
Ferd mentioned that ACT UP wanted Vida/SIDA to join this demonstration. He was hesitant because he recognized that ACT UP had a problem with race — it was a mostly white organization and it was white led — and he believed we needed to be cautious not to be used. I was a young gay man, and I was like, This sounds fun! A national demonstration! I started meeting with folks, and that was my entrée. We created this People of Color Caucus.
KEEHNEN Writer, LGBTQ historian, and bookseller
Think of organizing all this without computers. With phone trees.
SANABRIA Senior director of the Puerto Rican Cultural Center
I went to lots of meetings. I was in a relationship, and my partner was uncomfortable with how obsessed I was with the demo. He did say he’d watch from the sidewalk; that was important to me. The day before, he told me he changed his mind and wouldn’t be going. That’s when we broke up.
McMILLAN Activist and hairstylist
We had support from people I never thought would support us, and then people I thought would be supportive did not turn out. People from social service agencies were afraid they’d lose funding.
MIGALSKI Associate professor of psychology at Adler University
I was enrolled in an elective in the nursing school at Loyola called Interdisciplinary Study: HIV and AIDS. The two teachers were these cool Evanston hippies. They’d brought into the classroom people living with HIV and AIDS. And I knew so little. One assignment was to do a community-based project. There was this butch lesbian named Neela who’d heard about the action, and she was like, “We should do this.” I remember being like, “ACT UP, aren’t they sort of radical?” And she was like, “Yeah, but you and I need to go.”
KRACHER Activist and former executive director of Crossroads Fund
The Women’s Caucus had a separate meeting at Ann Sather, about what our own action would be. There were a lot of ideas; some were, like, insane. And we felt we could do something with mattresses.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
To illustrate the lack of beds for women at County.
PATTEN Artist, activist, writer, and educator
The idea was to create the AIDS ward in the street.
KEEHNEN Writer, LGBTQ historian, and bookseller
I don’t think any affinity groups knew what other affinity groups were going to do. There was secrecy; you and your five people and your support people knew.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
They worried cops were infiltrating, or the FBI.
KEEHNEN Writer, LGBTQ historian, and bookseller
Activists came into town, and we were quartering the troops. There was a sign-up sheet with people who had room, because a lot of people couldn’t afford a hotel.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
Everybody took people in, if they had a sofa, an air mattress.
KRACHER Activist and former executive director of Crossroads Fund
The first day of actions was the teach-in at UIC. That was Friday [April 20]. We had one of those big lecture halls, and we had little classrooms for breakouts.
JOHNSON Activist
We had to be organized. We had to make sure we had our legal team, marshals, medical, all that.
KRACHER Activist and former executive director of Crossroads Fund
And then, just because it was not important to sleep — we were all so young, weren’t we? — we had this crazy overnight soup kitchen performance stage at Cook County Hospital.
EDWARDS Educator and union organizer
We called it the Vigil.
McMILLAN Activist and hairstylist
We pitched tents right across from the main entrance, near the helipad. It was chilly, but there were a few of us who braved it out, who spent the night.
PATTEN Artist, activist, writer, and educator
It was a 24-hour vigil, noon one day to noon the next. Some women with AIDS who were the first to be public about their status — Jeannie Pejko, Novella Dudley, Ida Greathouse — they were key speakers. Jeannie’s the only one of that group who survived.
KRACHER Activist and former executive director of Crossroads Fund
And the patients from County came — you know, you’d go to County and you’d wait like eight hours — so they’d come and eat, then they’d go back, and we were leafleting the waiting rooms, saying, “This is why we’re doing this.”
JOHNSON Activist
We had a full soup kitchen from Saturday until the food ran out early Sunday morning. Tom Tunney of Ann Sather provided the soup and the bread, and, oh my God, he provided this big-ass hot plate, the biggest pot I have ever seen. It was taller than a toddler, this pot! And we just kept it going. Sometimes we had lines, and then sometimes in the wee hours of the morning we just had random people come up and ask for a bowl. It was all comers.
KRACHER Activist and former executive director of Crossroads Fund
We set up a stage and had performances. Three of us in some early-morning slot did “Oh No! Lesbians With Guitars!” I mean, it was that pathetic.
EDWARDS Educator and union organizer
I remember martial arts board breaking.
McMILLAN Activist and hairstylist
There were three guys in drag fighting, like, “I’m HIV,” and the other one is, “I’m HTLV-3,” and the other one was, “I’m LAV.” Because it was the French who isolated HIV first, and they named it LAV. I have pictures of them in my scrapbook, the viruses in their drag outfits, trying to outdo each other.
KRACHER Activist and former executive director of Crossroads Fund
Sunday night was the rally at Wellington Church.
EDWARDS Educator and union organizer
I spoke so people would know who I was. My job the next day was to keep track of arrests so we could make sure we got everybody out of jail.
KRACHER Activist and former executive director of Crossroads Fund
It was logistics: “Here are your National Lawyers Guild lawyers, they’ll be wearing pink hats.” They would talk, they’d say, “If this happens, you could be charged with this. This is what you should have on you. If you have medications, let us know.” Then we gave logistics raps. Then it became this spirited pep rally.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
I was assigned five ACT UP folks. It was my job to keep track of them at the protest and make sure they were OK. So if they get hit with a brick, I’ve got to figure out: How do I get a medic out here, or do I do first aid? If they get arrested, I’ve got to scramble with them as far as I can. Can I get in the paddy wagon? Do I bail them out? And I thought, Good God, I don’t know what this is, but I’ll do it.
EDWARDS Educator and union organizer
The church was packed. Some out-of-towners were there, some in-towners, our key people.
KEEHNEN Writer, LGBTQ historian, and bookseller
Maybe I have a hyperawareness of conflict, but there was a definite friction that night between outside activists and locals. It was important for Chicago to own that this was an ACT UP action, but it was also an ACT UP Chicago action.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
You did have some strong personalities.
KEEHNEN Writer, LGBTQ historian, and bookseller
I think it was Ferd who got up and said, “We’re glad everyone’s here, thank you, but ...”
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
He was a great defuser that way: “This is our shtick, this is our city, we welcome you, let’s have a civil dialogue.”
PATTEN Artist, activist, writer, and educator
Bob Rafsky, he was a recognizable figure in ACT UP New York. There were some New Yorkers there being snotty and critical, and he just said, “Shut the fuck up. These Chicago people know what they’re doing!”
SANABRIA Senior director of the Puerto Rican Cultural Center
Then they started to talk about civil disobedience, and I thought, Wow, that took it to a whole new level. I was sitting next to Ortez. I love me some Ortez. Ortez was friends with James Baldwin! And he goes, “You’re gonna get arrested with me, right?” So I was shamed into it.
EDWARDS Educator and union organizer
I remember Ortez speaking from the balcony.
KRACHER Activist and former executive director of Crossroads Fund
He was unbelievably charismatic. He made a speech about how the People of Color Caucus was going to do whatever the women wanted to do. They wanted the women to lead. Which was a real solidarity gesture, because there was tension about who were we fighting for, and why were we so focused on women when there were all these gay men. And then the PISD Caucus rose and said, “Well, we’ll do whatever the POC Caucus is doing, and we support the women as well.” So in the overall group’s mind, the culmination of the protest was meant to be mattresses in the street.
EDWARDS Educator and union organizer
As we left, someone handed me a report, saying, “I got this from a source at the police department.” It was presumably the plans for the police, and it was overblown, meant to make us feel like we’d be met with tremendous force.
III. “IT WAS LIKE D-DAY”
The march began on Monday at 8 a.m., when protesters — estimates of their numbers ranged from 1,000 to 3,000 — assembled outside the Prudential Building at Randolph and Michigan. The group would proceed north across the Michigan Avenue Bridge to the headquarters of Blue Cross Blue Shield, then located at 676 North St. Clair Street, and on to the American Medical Association, at Grand and State. Some 250 police officers, 50 of them mounted, corralled the marchers onto the sidewalks — at least at first.
EDWARDS Educator and union organizer
We gathered outside the Prudential Building. There were a couple dozen people, and I was wondering, Where’s everybody? The police were lined up on their horses. And then, just like that, we materialized.
MIGALSKI Associate professor of psychology at Adler University
I took a van downtown with Neela and folks from ACT UP I didn’t know. And James, this flight attendant — I had the biggest crush. I remember thinking, Should you be doing this? I was worried I was going to get hurt. We were walking somewhere on Wabash, and all of a sudden there were scads of people with protest signs.
PATTEN Artist, activist, writer, and educator
We marched through the Loop and stopped at these different sites and did a variety of things, including guerrilla theater.
KRACHER Activist and former executive director of Crossroads Fund
A smaller group within the Women’s Caucus, we’d wanted to drop a banner from the roof of the County Building at the end of the route. We’d gone earlier to do reconnaissance, had climbed up on the roof. We’d stayed up the whole night before making this massive banner. It was in two pieces, and I had half of it in a Marshall Field’s bag; my friend had the other half. We go to the law library across the street in the morning to see the roof, check that it’s clear. We’re wearing downtown work clothes to be incognito. We go upstairs, I look out the window, and I go, “Come over here.” The entire roof was filled with cops, readying for the protest. I just left the banner in an alley somewhere, because it was so heavy, and I joined the protest on the bridge. You came up with a lot of ideas, and some of them worked and some did not.
KEEHNEN Writer, LGBTQ historian, and bookseller
I remember walking, hearing honks, mostly supportive. Everybody in these office windows was watching.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
You’re hearing the voices, the drums, the chanting. There were tambourines, there were woodblocks.
MIGALSKI Associate professor of psychology at Adler University
I remember a small crowd standing with placards and screaming about God and punishment.
PATTEN Artist, activist, writer, and educator
During the march, there were constant negotiations with the police. I don’t think we had permits. But we were careful — this was about nonviolence, civil disobedience. We had intermediaries, people acting as marshals.
MIGALSKI Associate professor of psychology at Adler University
I wore, like, a polo, and I remember somebody saying, “OK, what are you wearing?” Some protester had a bag of shirts and said, “Here, put this on.” It was that classic black shirt, “Silence = Death,” with The Pink Triangle. I didn’t even know at the time the significance of The Pink Triangle. I asked someone under my breath.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
I had my banner safety-pinned on my back, with a bloody handprint, red paint dripping down: “The government has blood on its hands.”
KEEHNEN Writer, LGBTQ historian, and bookseller
People were leading chants with the megaphone. There was “Women with AIDS under attack! What do we do? Act up, fight back!”
KRACHER Activist and former executive director of Crossroads Fund
Every ACT UP protest, there was anger and rage, but there was also humor. It was educational, fun, campy, angry.
KEEHNEN Writer, LGBTQ historian, and bookseller
Marching down Michigan Avenue, it was “We’re here, we’re queer, we’re not going shopping!”
HAYFORD Director of government and foundation relations at Esperanza Health Centers
When the cops pulled out the rubber gloves, people would chant, “Your gloves don’t match your shoes, you’ll see it on the news!”
MIGALSKI Associate professor of psychology at Adler University
I’m thinking, Are we just gonna walk and chant things? I asked someone near me, and they said, “No, we’re gonna try to get inside a building, we’re gonna lie down in the street.” And I thought, Ohhh my God, what have we signed up for?
JOHNSON Activist
There was a moment right before we got to the AMA. We started out on the sidewalk with the police there, and at one point we rounded this corner, and I turned back and saw the group surge forward into the street and take the street. We were in the street, but they took the street. I almost peed on myself, it was so fantastic! And that led us to the AMA.
EDWARDS Educator and union organizer
ACT UP L.A. did a performance there. I remember doctors’ coats with money coming out of the pockets.
MIGALSKI Associate professor of psychology at Adler University
I’d never heard of a die-in before. I felt like a chicken until I lay down. Within minutes, there were cops with sticks, cops on horses, and I remember thinking, Those horses are so close. People die from getting kicked! But I knew I was part of something bigger than myself. Speaking out to the Jesuit administration at Loyola was one thing, but being at an ACT UP rally — subsumed by it all — was powerful.
KEEHNEN Writer, LGBTQ historian, and bookseller
When people do chalk outlines in front of your company, it’s shaming you into the fact that you can call your business whatever you want, but you’re basically making money off sick people.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
The press is running to keep up, shove a microphone in your face if your body is being outlined. The person would get up, run to the next corner.
According to the Chicago Tribune, five protesters were arrested outside the American Medical Association, and two dozen more were arrested in front of the building at 333 West Wacker Drive, which housed MONY, another insurance firm. They had attempted to rush the building.
MIGALSKI Associate professor of psychology at Adler University
I saw people put in the paddy wagons. And I’m thinking, I cannot end up arrested. I live with my parents, I’d have to call them. The cops said, “It’s time for you to get up.” Some people didn’t, and they got arrested, but I went back into the line and kept walking. In retrospect, I wish I’d had the guts to stay.
PATTEN Artist, activist, writer, and educator
The police were brutal. People got hurt.
McMILLAN Activist and hairstylist
They put people into headlocks. They were cruel, abusive. At that point in history, we were just so hurt and down and angry. We just felt that no matter what you did to us, we’re not going.
SANABRIA Senior director of the Puerto Rican Cultural Center
If you were HIV positive in 1990, it’s like, Fuck, I’m going out. I’m less afraid of a police officer than I am of throwing up constantly and weighing 98 pounds at County with no meds.
McMILLAN Activist and hairstylist
A lot of the ACT UP New York people said they would never come back to Chicago because the police were so brutal.
MIGALSKI Associate professor of psychology at Adler University
The cops were saying nasty things. You know, “Go home, faggot,” “Look at those dykes, they think they’re men.”
HAYFORD Director of government and foundation relations at Esperanza Health Centers
We’re not angry at the cops; the cops aren’t deciding who gets funding. But it always degenerates into that, you can’t help it. That was frustrating for me; once again, everything on the news will be us screaming at the cops. And the issues get lost.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
I met this older man in a wheelchair, his wife was pushing him, and their grandson had died of AIDS in Kankakee. His parents had kicked him out, and the grandparents took him in. By happenstance, they were downtown that day. They said, “If our grandson were alive today, he would be supporting.”
By noon, the protesters had reached the end of the route, flooding Clark Street outside the County Building and overflowing into Daley Plaza and Randolph Street.
McMILLAN Activist and hairstylist
We kept telling the New Yorkers, “Don’t deface the County Building.” People had spray-painted “ACT UP” and “Silence = Death.” It was on there for a while. You might even still see the stone is discolored where they had to bleach it off.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
There was a Holocaust remembrance in Daley Plaza, right across from where we ended up. Richie Daley had brought in the big guns — survivors, musicians. They had Itzhak Perlman. Some of us couldn’t help but observe, pay respect. That was honoring the dead; this was fighting for the living.
McMILLAN Activist and hairstylist
They all started cheering us on.
JOHNSON Activist
The women’s action with the mattresses was one of the last things to happen, because we wanted the spotlight on them.
PATTEN Artist, activist, writer, and educator
Those of us doing that action had peeled off early to prepare.
KRACHER Activist and former executive director of Crossroads Fund
The mattresses were stashed in alleys around the Loop.
PATTEN Artist, activist, writer, and educator
We dragged these dirty mattresses about a block, two people per mattress.
KRACHER Activist and former executive director of Crossroads Fund
They had slogans on them like “AIDS Is a Disaster, Women Die Faster, ” so they became props, and if the police thought anything, they thought, This is an idiocy, they’re lugging these mattresses.
PATTEN Artist, activist, writer, and educator
We had to time all this, coordinate our watches.
KRACHER Activist and former executive director of Crossroads Fund
It was amazing: Suddenly all these mattresses appear in the intersection, and these women put hospital gowns over their clothes and plop down. There were 15 mattresses. I was still wearing business clothes. We made use of that, because the police couldn’t tell I was part of things with how I was dressed, so when people starting hitting the mattresses, somebody handed me the megaphone. I’d move around in the group leading chants. There were two defensive rings around us, the PISD Caucus and the People of Color Caucus, creating a barrier against the police.
SANABRIA Senior director of the Puerto Rican Cultural Center
We linked ourselves so the women would have a little more time.
KRACHER Activist and former executive director of Crossroads Fund
If the goal of direct action is to tie up the works and call attention, that action achieved its goals.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
That’s how you make your statement: “You think you’re inconvenienced? You should see my friend in the ICU with the tubes running in and out of his head. You think you’re inconvenienced? Talk to my friend who lost his job because he has HIV. You think you’re inconvenienced because your commute is blocked by 20 minutes? To hell with it.” That’s the message.
KRACHER Activist and former executive director of Crossroads Fund
It effectively stopped Randolph, Clark, La Salle.
EDWARDS Educator and union organizer
I was across from the County Building with my clipboard, keeping track of arrests. The mattresses were out there, people were starting to get arrested, and suddenly this thing happens up on the ledge of the County Building that we didn’t know about. Cameras, attention all shifted up.
MIGALSKI Associate professor of psychology at Adler University
People were chanting, “The whole world is watching! The whole world is watching!” And I had chills up my spine, and I felt like, My God, I am part of something.
McMILLAN Activist and hairstylist
It was Danny, Tim Miller, Frank Sieple, who’s no longer with us, Paul Adams, who’s no longer with us, and me. A couple weeks earlier, we had scoped out the County Building, so we knew where we could climb out on that ledge above the entrance. We were supersleuths. We went in drag, I call it: I had a dress shirt with an ACT UP shirt underneath. We walked right past the secretary into an office and moved a desk against the door. It was like being in a Fellini film. We opened the window and climbed out. Then we unfurled our banner: “We Demand Equal Healthcare Now.”
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
You could see the triumphant pose Tim made. You know: “We won.”
EDWARDS Educator and union organizer
It was spectacular. And frightening, because you saw the cops trying to pull people off. They were fighting to stay up there.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
It was pandemonium, which was great.
MIGALSKI Associate professor of psychology at Adler University
Everyone’s cheering these guys on, and I thought, Fuck yeah. The courage. I remember thinking, like, Why have you waited? You’re 22. Why has it taken you so long to find your voice?
McMILLAN Activist and hairstylist
The Cook County [sheriff’s deputies], not the Chicago police, got into the room. And the first two guys they dragged through the window, they banged their heads on the floor and roughed them up.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
Danny fought so hard to stay out there. These were people on the third floor of a building downtown, and they weren’t kidding around. Everybody was close to the edge. Danny was shouting. He wanted the crowd to hear that he was willing to take it a step further, if someone at the County Building didn’t pull this Nazi cop in and understand you got people on a ledge. I was wearing this long peasant skirt, and I remember holding it out and thinking, OK, maybe I can catch him in this.
McMILLAN Activist and hairstylist
Partway through, the sheriff got up there. He was running for reelection and didn’t want bad PR, so by the time they got me, he said, “We’re not gonna hurt you, son, we just don’t want you to fall.” So I went peacefully. A lot of other people got taken to police headquarters at 11th and State, but because we got arrested by county police, they took us to the lockup under the Daley Center, right under the Picasso. They gave us bologna sandwiches on Wonder bread.
Tussles with the police continued down on the streets as well. According to the Tribune, 129 people in total were arrested that day.
SANABRIA Senior director of the Puerto Rican Cultural Center
I was next to Ortez, and he was taken. And then they came for me, and I got those plastic cuffs behind my back. One officer had my shoulders and the other had my feet, and they ran me through the crowd and threw me in the wagon. It wasn’t pretty, but I was in my 20s, I went to the gym. I was landing in a pile of beautiful people who were looking out for me. These lesbians were screaming at the police, “He’s a human being!” And I’m thinking, Well, I’m not hurt. I’m a little emotional, but ... There were a lot of us in the wagon and it was hard to breathe. I found that cold air is heavier, so if you put your head close to the ground, you can breathe easier.
KRACHER Activist and former executive director of Crossroads Fund
So they had to fight through these people, and then they start pulling the women off the mattresses.
PATTEN Artist, activist, writer, and educator
We were trying to stay on the mattresses, locking arms to make it harder for the police, so they’d have to drag three people. There’s video of me trying to hold on to someone, and we just lost it, we look so weak. Some people were more injured than others.
KRACHER Activist and former executive director of Crossroads Fund
There were different strategies when you got arrested. People went limp, fought, got up and walked to the [paddy wagon]. Personally, I never wanted to be dragged anywhere. If that cop had said, “Get in the wagon,” I’d have walked.
JOHNSON Activist
This is where Martin Luther King would say you’ve got to dig within and find those reserves.
KRACHER Activist and former executive director of Crossroads Fund
My brother was a reporter in San Francisco for one of the local affiliates, and he was watching the news feeds, and he saw me. This cop just picked me up with one hand and threw me in the wagon. I tossed the megaphone to somebody.
SANABRIA Senior director of the Puerto Rican Cultural Center
We were locked in the holding cells at 11th and State, everyone comparing tattoos. I felt like the only one without a tattoo. Some of the young gay men were screaming, like, “Hey girl!” And the lesbians were the ones saying, “There are people here who are also arrested who are black and brown and poor and have nothing to do with this, and we shouldn’t be acting like fools.”
KRACHER Activist and former executive director of Crossroads Fund
There were too many of us for the holding cells, so after we got processed, they put us in this auditorium.
SANABRIA Senior director of the Puerto Rican Cultural Center
They fingerprinted us, and they were wearing gloves because they were afraid we were gonna give them AIDS.
KRACHER Activist and former executive director of Crossroads Fund
We were all together, so we turned it into a party. And the cops, some of them were laughing hysterically. It must’ve been a great day for them, because they’ve got these happy queers, and everybody’s in good spirits. It was this mix of euphoria, exhaustion, goofiness. People were making out, in some ways just because they wanted to, but also to incite the cops.
SANABRIA Senior director of the Puerto Rican Cultural Center
I was with this beautiful young man from Mississippi. He and I made out a lot. I remember afterward saying, “We should get arrested again. That was fun!”
KRACHER Activist and former executive director of Crossroads Fund
This one cop kept going, “No kissing!”
SANABRIA Senior director of the Puerto Rican Cultural Center
Wrong thing to do. Because then everybody started making out. And then those who weren’t making out starting chanting, “Nooooo kissing! It’s against the law!”
KRACHER Activist and former executive director of Crossroads Fund
So they literally made us get up and sit boy-girl, boy-girl.
KEEHNEN Writer, LGBTQ historian, and bookseller
At the end of the day, we all walked to the jail.
EDWARDS Educator and union organizer
It was a party out there, the crowd assembled waiting for everybody to get out.
SANABRIA Senior director of the Puerto Rican Cultural Center
I was greeted like a gladiator.
JOHNSON Activist
That’s what you do. After everything is over, you go to the jail and you wait outside and check off the list. It’s not over until the last person is released.
McMILLAN Activist and hairstylist
We all went dancing at Berlin that night. It was like we won the war, like D-day or something.
KEEHNEN Writer, LGBTQ historian, and bookseller
There was no question whether it was successful. If you were there, you knew it was.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
You were part of living history.
KRACHER Activist and former executive director of Crossroads Fund
It was euphoria.
KEEHNEN Writer, LGBTQ historian, and bookseller
I remember dancing, I remember drinking. I remember Madonna’s “Vogue” just coming out, because it was a big thing that night. We had no idea what you were supposed to do — it wasn’t hot really until a few weeks later. All the New York people knew, but we didn’t, we were so provincial.
KRACHER Activist and former executive director of Crossroads Fund
They played “We Are Family” by Sister Sledge, and the place just lit up. I remember the thrill of these words ringing true for us: “We are family in this room.” If I could recapture that energy and bottle it, oh man.
KEEHNEN Writer, LGBTQ historian, and bookseller
Danny got sick in the evening. I remember buying him a beer, but I don’t think it agreed with him. It was just a long day.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
And he hadn’t taken his pills for a couple of doses. They’d commandeered his backpack.
KEEHNEN Writer, LGBTQ historian, and bookseller
The music was loud, but then everybody was hoarse anyway from the yelling and chanting. It was like a night out with mimes! For days, you could tell who’d been there.
MIGALSKI Associate professor of psychology at Adler University
I’d have been way too afraid to go to Berlin that night. But give me six weeks, and I’d have been there. That was a summer of becoming.
EDWARDS Educator and union organizer
They were showing the TV reports on video screens, so people are seeing themselves get arrested: “OK, we made the news!”
KRACHER Activist and former executive director of Crossroads Fund
When I got home, there was this message from my brother going, “Oh my God, are you OK? They threw you! Call me, I need to hear from you!”
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
Even the planners were surprised at the enormity. And it was viewed by the other chapters as a remarkable success.
KEEHNEN Writer, LGBTQ historian, and bookseller
It’s like, I can’t believe that worked.
KRACHER Activist and former executive director of Crossroads Fund
And the next day or the day after, the AIDS ward was opened to women. Miraculously.
McMILLAN Activist and hairstylist
They said it had nothing to do with our demonstration, and of course we all laughed, because that was bullshit.
IV. “THEY DIED HEROES”
To many, the April actions were the pinnacle of ACT UP Chicago’s work. While the organization lived on and even grew, it suffered from fissures and internal tensions. Subsequent actions were smaller and met with even more police force.
Danny Sotomayor quit ACT UP that August, saying publicly that “AIDS has become the fourth item on the ACT UP agenda, after racism, sexism, and gay and lesbian visibility.” He died of AIDS complications on February 5, 1992. Ferd Eggan became the AIDS coordinator for the City of Los Angeles; he died in 2007.
The introduction of the “AIDS cocktail” — an antiretroviral drug regimen — in 1995 dramatically prolonged the lives of infected people. Today, AIDS is widely seen as a chronic illness manageable with drugs, and the rate of new HIV infections has fallen, but the overall number of infected people continues to rise (to around 38 million people globally, 1.1 million of those in the United States), and there are close to a million preventable AIDS deaths a year. As of 2018, the World Health Organization estimated that over 32 million people have died of the disease. Many Chicago activists from the early days of the epidemic remain devoted to the cause.
EDWARDS Educator and union organizer
I fell into a funk afterward. We’re planning for almost a year, and then it’s over.
MIGALSKI Associate professor of psychology at Adler University
I presented back at Loyola and talked about policy and resources and what we were protesting. We had some suburban kids who didn’t get it. But I felt empowered to talk about what happened. A week later, I got the book The Pink Triangle and read about the Nazis’ treatment of gays in the ’40s. I became consumed with interest in our history.
EDWARDS Educator and union organizer
After the April actions, the meetings at least tripled. Which was great, but it also contributed to conflict. There were just too many people inspired by that day, bringing whatever agendas.
KRACHER Activist and former executive director of Crossroads Fund
It’s a complicated thing for any group to absorb. There was more of “We shouldn’t be talking about that — why aren’t we focusing on this?” We did another AMA action the next year. It didn’t get much attention. Perhaps City Hall, perhaps somebody else, called the news and said, “Don’t give them any coverage.” I mean, I’m a conspiracy theorist at heart. People got brutalized by the cops, pulled off the sidewalk.
EDWARDS Educator and union organizer
They picked off leaders, and then they came from behind and got people who it might’ve been their first action. Who weren’t even intending to get arrested. That was the last really big protest. It might’ve had a stifling effect, those arrests.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
You can’t live in a state of emergency for long. After a while, AIDS was not an emergency. But that spirit — “Let’s bring resources to everybody, let’s put in charge folks who are never in charge” — is extraordinary to me. We lost that once Clinton came in and we had a friendly administration. It went back to business as usual. When protease inhibitors [a class of anti-viral drugs] came out in ’95, it became “Medicine will save us.” But the model of those medicines was based on a middle-class, stable existence: “This one’s got to be refrigerated, this one not. This one on a full stomach, this one on an empty stomach.” If you don’t take these drugs correctly, the virus mutates. I said, “This is going to make the chasm even deeper.”
JOHNSON Activist
ACT UP New York is still around, and a group of them called Rise and Resist has been protesting Trump since the election. They do civil disobedience training, like demonstration boot camp. I have congestive heart failure, and I cannot put my body on the line like I used to. I miss it! But the lessons of ACT UP are being transferred, just like the lessons from the anti–Vietnam War movement were transferred to ACT UP.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
We have historical perspective now. Then, we were living it. We worked, we volunteered, we’d go to funerals. When death becomes your constant companion, you become a medieval person. That’s what we were. Our losses rivaled our grandparents’. How do you explain that to someone unless they were there?
KRACHER Activist and former executive director of Crossroads Fund
All these memories are relevant and important. One man’s history is not the other woman’s, let me tell you that.
PATTEN Artist, activist, writer, and educator
Politics and architecture produce constant erasures of what happens in cities. It does blow your mind when you realize how remote this history is for so many. I have so many students trying to make sense of the insanity we’re living in, and I find ways to bring this history into my teaching.
HAYFORD Director of government and foundation relations at Esperanza Health Centers
To me, it was a vision of utopia. Here are mostly white, college-educated, upwardly mobile men throwing themselves in the street, willing to get trampled by horses for the sake of the health care of mostly low-income women of color. And I said, My God, we have arrived. One of the through lines of AIDS activism in that period was what we now call intersectionality: that the biases of our culture were deepened and reified in this epidemic. I thought, Finally, middle-class white people will see that what we expect for ourselves we have never expected for people of color. Here we go. Of course, I was dead wrong. But that was the vision I saw.
MIGALSKI Associate professor of psychology at Adler University
I remember thinking, You will never go to Pride alone again. You have found your people. And you’re eventually going to have to come out. At grad school the next year in Alabama, I became this radical queer, active in Queer Nation. AIDS activism became my avenue to gay activism. I didn’t expect it to work out that way. That day made me an activist. I left transformed. My parents found out I was gay two years later from a CNN interview. The whole family, including my grandparents, saw it during Sunday dinner.
CANNON Activist and founder of Open Hand Chicago and Vital Bridges Food Program
For so many, that day was a crossroads. They never could go back to what they were doing. That was an impact I don’t think Ferd and Danny even thought about.
McMILLAN Activist and hairstylist
They died heroes: Ida Greathouse, Ferd Eggan, Ortez Alderson, Paul Adams, Danny Sotomayor.
MIGALSKI Associate professor of psychology at Adler University
That first pink triangle shirt wore out, but I have other shirts at home. My husband — he’s quite a bit younger than me — he has one, too, but his says “Action = Life.”