Legislation and Activism in the AIDS Crisis in Illinois

For many Americans of the 1980s, death seemed perpetually just around the corner. Children across the country practiced hiding under their desks and throwing their bodies onto the curb to protect themselves from nuclear attacks, and Chernobyl and the Challenger disaster shook the public’s belief in the infallibility of scientific knowledge and government oversight. However, the biggest issue that dominated many people’s minds, especially in urban and queer communities, was AIDS.

First diagnosed as Kaposi’s sarcoma in 1981, AIDS would soon cause a nationwide panic. State officials were eager to track people’s HIV status, and suggested such dramatic measures as tattooing people with AIDS (PWAs) and quarantining them. This fear of the disease, and the homophobia that underlaid it, was countered by AIDS activists, who worked to protect people’s right to keep their sexuality and HIV status private and to educate the public about AIDS and its prevention. The key to the efforts of state officials to track and control PWAs and activists to educate and advocate for PWAs was the control of information. In the AIDS crisis, control of information amounted to control over people’s bodies and autonomy.

Illinois was no exception. 14,105 people were diagnosed with HIV in Chicago between 1981 and 1995, and, in attempting to confront the crisis, Illinois legislators passed a great deal of regressive and reductive legislation that neglected or in some cases actively harmed the population that was at the highest risk for contracting HIV. One particular such law was unique to Illinois: a mandatory premarital testing law that required couples to both be tested for HIV antibodies before they could be issued a marriage license.

Examining this law and activists’ reaction to it provides insight into how activists tried to intervene in state control of information surrounding the AIDS crisis.

In 1987, the Illinois state legislature passed the law, and in its first year, an estimated 155,458 people were tested at the cost of nearly five and a half million dollars. Twenty-three of those people were found to be HIV positive. Throughout the law’s approximately two-year lifespan, it allowed for 250,000 state-funded tests and fifty-two positive results. Of the people diagnosed with HIV between 1981 and 1995, 65 percent were likely exposed through homosexual sex with a man, while only 6 percent likely contracted the disease through heterosexual contact with someone who had HIV. Of course, gay marriage was not legal at the time, so the law was only catching a miniscule fraction of HIV cases, and at an enormous cost to the state. Therefore, in 1989, a bill was proposed to remove the HIV testing requirement. The reaction to this proposal was swift and vociferous.

On January 27, 1989, Illinois House of Representatives member Penny Pullen wrote a letter to her colleague Barbara Flynn Currie to discourage her from voting to repeal the premarital testing law. Pullen argued that although only twenty-three people had been diagnosed with HIV at that point, the lives of those twenty-three people were worth the expense. Furthermore, she said, informing the spouses-to-be of their HIV status may have saved the lives of countless infants not yet conceived. Although, as she said, she did not like to “play the cost/benefit game” when it comes to human life, she did point out that the cost of caring for an HIV-positive infant is much higher than that for an adult. She wrote that repealing the law “would signal to policymakers in other states that Illinois has decided AIDS is not important at all. Do we think that, really?” The question may not have been as rhetorical as Pullen intended.

A conservative from Park Ridge, Pullen consistently sponsored legislation that sought to test and track Illinoisans’ HIV status, including a bill that required the Illinois Department of Public Health to ask the federal government for the names, addresses and phone numbers of HIV-positive Illinoisans. “She wants to test the whole world, but doesn’t care about the people whose results come back positive,” Grant Thornley, co-chair of the Illinois Gay and Lesbian Task Force (IGLTF), said of Pullen. In 1989, “the world” included accused sex offenders, children up for adoption or fostering, clients at drug treatment centers and STD clinics, and prisoners. In her eagerness to gather information about HIV positive people, she put people at risk of having their sexuality outed, losing their jobs, their insurance, and their social circles. Pullen did not advocate for post-test counselling to inform people about next steps after a positive test; she hoarded information about people’s status and restricted the flow of educational information to the public. Furthermore, at the time of the letter, she had never introduced an AIDS education bill. Pullen attempted to create a state monopoly on information about AIDS, and in doing so prevented money and resources from reaching the precise populations that needed them.

Pullen did not, of course, see herself in this light. “She feels she’s carrying the torch to protect people from AIDS,” IGLTF board member Jerry Stevens told the Windy City Times. However, she saw “people with AIDS” as babies with mothers who used intravenous drugs, or straight women whose husbands had cheated on them and exposed them to the disease. The true high-risk Illinoisans were gay men, intravenous drug users, and low-income people and people of color who did not have access to networks of information and care, and would not be affected by Pullen’s anti-AIDS bills.

So when the mandatory premarital testing law was up for repeal, members of the AIDS Foundation of Chicago (AFC) testified in favor of disbanding the law, and attempted to counter the dual conception of “innocent” AIDS victims who needed protecting and “guilty” ones who needed to be tracked and controlled.

On April 18, 1989, AFC Director of Public Affairs Andrew Deppe submitted a testimony on the law before the Judiciary Committee of the Illinois House of Representatives. He acknowledged that Illinois had been a pioneer in developing premarital testing (Louisiana passed a similar law but repealed it after only seven months), but cited the immense cost per diagnosis as a reason for the state to reconsider. Additionally, he informed the committee that “AIDS testing” is a misnomer, as there is no test for AIDS, only for HIV antibodies, and not all people with HIV develop AIDS —therefore, mandatory HIV testing could lead to positive results for people who would not actually develop AIDS. Furthermore, the AFC discussed the potential implications of the law for the heterosexual couples who were getting married—a false positive result could lead them to lose their jobs or insurance, and the law drove many people to leave Illinois to get married. The testimony from the AIDS Foundation addressed Pullen and other legislators’ concerns about HIV on their own grounds, arguing that mandatory premarital testing would hurt the very population they were trying to help — young, straight couples planning to get married.

Although AFC resisted the AIDS testing legislation proposed by the Illinois legislature, it was direct action groups, specifically the AIDS Coalition to Unleash Power, or ACT UP, that brought the realities of the AIDS crisis into the streets. Through public education campaigns, die-ins, phone zaps, and even a silent funeral procession down Michigan Avenue, ACT UP/Chicago was out in both senses of the term—out in terms of their sexuality and their HIV status, and outward-facing in their attempts to get the disease recognized for what it was—a sexually transmitted virus that was more likely to occur in certain situations, not a “gay plague.” ACT UP was extremely successful nationwide and in Chicago in advocating for people with AIDS. They held a demonstration in Daley Plaza demanding that the Cook County Hospital AIDS Ward open its care to women; women were admitted the next day. They were also able to exert pressure on legislators that led them to triple Chicago’s AIDS budget and double Illinois’.

Illinois’ premarital testing law might appear to be a unique case. Legislators in other cities and in Chicago created needle exchanges and AIDS wards to combat the AIDS crisis, ultimately fairly effectively. However, the law and Pullen’s other HIV testing initiatives demonstrate how the state hoarded information, both personal information about people’s sexuality and HIV status and educational information about the spread and prevention about HIV and AIDS, in order to control the narrative surrounding the disease. Pullen and other legislators were able to imagine they were defending a white, straight, middle-class public who were in danger of contracting AIDS through a combination of unfortunate chance and infection by people with AIDS from queer and intravenous drug using demographics. It was only by intervening in the stateward flow of information that activists like ACT UP and the AIDS Foundation of Chicago were able to realign the priorities of the AIDS response in Chicago.

The issue of state information gathering is also certainly not limited to the AIDS crisis in the 1980s. The city of Chicago is constantly adding to its gang database, which has already led to non-gang affiliated people being harassed and discriminated against by police officers. Of course, a government cannot respond to crises without gathering information about the public that they serve, but the case of Illinois’ mandatory premarital testing law serves as a reminder that the collection of information is not always as innocuous as it may seem.

Quotes and statistics that are not linked come from the ACT UP Chicago Records housed at the University of Chicago Library Special Collections Research Center. Thank you to the College Summer Institute for funding and support for this research.

The image featured in this article is used under the Creative Commons 2.0 license. The original was taken by Elvert Barnes and can be found here.