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AIDS: The plague years
Windy City Times Special Series in partnership with the AIDS Foundation of Chicago
by Tracy Baim, Windy City Times
2011-04-06

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If you are of an older generation, and especially a gay man, you probably remember reading or hearing about a July 3, 1981, New York Times article reporting on a strange series of illnesses striking gay men in East Coast and West Coast urban areas. Just 12 years after the Stonewall riots in New York, the decade of love and liberation had come to a crashing end.

There were some signs of distress earlier than 1981. Doctors and nurses, especially those with many gay patients, began to notice obscure illnesses cropping up. Gay health groups did screenings for venereal diseases, which were spreading rapidly.

But it was the summer of 1981 when the U.S. Centers for Disease Control's Morbidity and Mortality Weekly Report ( MMWR, June 5 and July 3 ) first reported that a new disease might be in our midst. It could have been around for years, but was just at that time starting to exhibit itself.

The individual illnesses striking these young gay men were otherwise rare—pneumocystis carinii pneumonia and Kaposi's sarcoma, the latter manifested as purple lesions. These and other strange illnesses had started to be diagnosed some 30 months prior to the 1981 MMWR reports. In January 1982 the syndromes together began to be called GRID, gay-related immunodeficiency, and the acronym stood until July of that year, when it was renamed AIDS, or acquired immunodeficiency syndrome.

The rumors and media reports, including those in the gay press, only trickled out for many months. But by 1983—'84, it was clear a major epidemic was at hand, one that struck more than gay men.

In Chicago, while existing organizations such as Howard Brown Memorial Clinic ( now Howard Brown Health Center ) and Gay Horizons ( now Center on Halsted ) tried to cope with new legal, psychosocial, and health issues facing the community, more support would be needed.

Within three years, major institutions were founded, many of them still in existence in 2011. These included AIDS Foundation of Chicago, Chicago House, Open Hand ( now Vital Bridges ) , Test Positive Aware Network, Stop AIDS, Kupona Network, AIDS Legal Council of Chicago, Chicago Women's AIDS Project, and dozens more. Eventually, more than 100 agencies dealt with some aspect of AIDS, from fundraising events, such as AIDS Walk and the AIDS Ride, to service groups, research and prevention organizations.

In many ways, the quick rise of activism and empowerment, the goals to "help our own," came out of the 1970s gay liberation movement. Women had been taking control of their own health and well-being ( founding women's crisis lines and shelters and learning with the book Our Bodies, Ourselves ) , and gays and lesbians were already creating community centers and support structures outside the mainstream. Gay doctors were starting to come out, and those same doctors would be on the front lines of medical research and care during the AIDS crisis. Both lesbians and gay men took leadership roles in the new AIDS infrastructure, heading small organizations that would become multi-million-dollar agencies respected nationally for their pioneering work.

Part of the response was due to the fact that mainstream doctors and agencies were quick to spout anti-gay feelings and even push for AIDS-phobic acts such as quarantining and contact tracing. Families ostracized their own sons and daughters, and schools tried to keep out HIV-positive children, including a boy named Ryan White. There was a huge backlash in the United States, and gay men and women were first to recognize that we had to find solutions from within. We could not rely on a homophobic culture to save our lives. Soon, allies would come to our side. But even in 2008, abstinence-only funding takes precious resources away from AIDS work, despite studies that show those programs do not work.

BY THE NUMBERS

As of December 2010, a total of 36,802 people had been reported to the Chicago Department of Public Health with a diagnosis of HIV infection—this includes both AIDS and HIV ( not AIDS ) —since reporting began in the early 1980s. Of these, 14,507 ( 39% ) have died and 22,295 are living with HIV infection.

While the disease in Chicago and other U.S. cities was initially reported as mostly affecting white gay men, it was quickly clear that its path would grow wider and would have an impact on the entire world.

The Chicago Department of Public Health began tracking what would later become known as AIDS in 1980. The statistics for those early years show fewer than five cases in 1980 and 1981, but a jump to 16 in 1982 and 42 in 1983. It should be emphasized that these were cases reported to CDPH, since not all doctors may have known what signs to look for ( especially in the early 1980s ) . [ In upcoming editions of WCT we will be showing detailed reports and charts about the disease in Chicago and nationally. ]

When speaking with gays and lesbians who were out in the 1980s, almost all report having felt the impact of AIDS, through their friendship circles, their families, the deaths of partners, or even their own HIV diagnoses. But what is striking is the vastly different experiences. In some cases, individuals may have lost literally hundreds of people from their circle of friends. Yet another person of the same age, in the same city, was relatively untouched, attending few funerals and giving few memorials. Many lesbians lost their gay brothers to AIDS, while some gay men lost no one close to them.

The change in the demographics of Chicago AIDS cases has also caused friction over the years in terms of access to resources. The AIDS Foundation of Chicago ( AFC ) has effectively juggled the needs of the crisis, bringing together groups from all parts of the region. The first AIDS Walk in Chicago was seen as not funding representative groups. It later collapsed, and was recreated by AFC as a new funding source for a wide range of groups.

But the bottom line for AIDS funding is that groups need to fight for a larger pie instead of fighting among each other for slices of an ever-shrinking one. The disease's demographics are shifting. That does not mean that prevention and services for white gay men should stop. It means that prevention and services should expand overall. It is also not a "Black and white" issue. While many people segregate based on race in Chicago, some whites live south, and many Blacks live on the North Side or prefer to receive services at places such as HBHC or TPAN.

The next years of the epidemic will continue to see these struggles for funding. The AIDS drugs have provided some relief, but there is still no cure. And there is no guarantee, even if a cure comes, that it will be made affordable to all those in need.

THE 1980s: ACTING UP

Gay men and lesbians interviewed for the Chicago Gay History Project saw the rise of AIDS in the mid-1980s as both a curse and a potential blessing. AIDS caused the voluntary and involuntary outing of thousands of gay people, from Rock Hudson to colleagues and family members. With death on the line, many gay men were emboldened to come out and live a quality life, not a closeted one. The American public had never seen so many gay men and lesbians "coming out" all within a short period of time.

But it was mostly a curse.

In 1984, Jerry Soucy and Katie Sprutta were part of the AIDS Action Project of Howard Brown Memorial Clinic, one of the first places people with AIDS could go. An article for GayLife on Nov. 8,1984, reported that there were 50 surviving people with AIDS in Chicago at that point. The duo bemoaned a general apathy within the gay community about AIDS. Soucy said he thought some portions of the community didn't want to deal with persons with AIDS. He added: "They think there will be a cure soon. … The crisis is not over and it is not going to be over soon."

Chicago for Our Rights ( C-FOR ) was an organization that already existed prior to its morphing into a Chicago chapter of the national ACT UP ( AIDS Coalition to Unleash Power ) movement in 1988. CFOR was a name originally chosen by the group of Chicagoans arrested at U.S. Supreme Court demonstrations after the October 1987 March on Washington. It was a radical group of street protesters unafraid of police and included gay men with HIV or AIDS, lesbians fighting for their friends, straight allies, and both younger and older people. There had actually been a radical group prior to C-FOR, called Dykes and Gay Men Against Repression ( DAGMAR ) ( alternate uses of the "R" were Right Wing, Reagan, etc. ) . DAGMAR had marched in Pride parades and responded to the KKK presence there. DAGMAR and C-FOR merged and became Chicago for AIDS Rights ( C-FAR ) , which later became the Chicago ACT UP chapter.

Some early AIDS demonstrations, like a June 30, 1987, protest at Federal Plaza, were sparsely attended. Among those at the protest was Lori Cannon, a longtime AIDS activist still working on AIDS issues in 2008. Chants included "Reagan, Reagan, you can't hide! We all know it's genocide!"

In August 1987, activists David Bell, Maryon Grey, Carol Jonas, Don Maffetore, Darral Pugh and Ferd Eggan tied themselves to the fence outside the Chicago home of Illinois Gov. James R. Thompson to pressure the governor not to sign homophobic AIDS legislation. An estimated 400 people participated in the DAGMAR-sponsored march and protest. A 24-hour vigil was held, with no arrests. ( Bell died soon after from AIDS complications, and Eggan died in 2007. )

On June 16, 1988, C-FAR occupied the Chicago office of the regional director of the Food and Drug Administration to push for more AIDS research and drugs in the pipeline. C-FAR members Eggan and Paul Adams ( who also died of AIDS ) commandeered two phones and began dialing the national FDA office to issue their demands. The demonstrators demanded that drug companies be banned from "extorting huge profits from people with AIDS." Eight protesters were handcuffed by security officers, some of whom wore rubber gloves. All were later released.

However, not all AIDS activists were on the streets risking arrest. There was a very deliberate move to have both an "inside" and an "outside" approach. Existing groups such as the Illinois Gay and Lesbian Task Force ( IGLTF ) and the Chicago Area Republican Gay Organization ( CARGO ) met with government officials, while ACT UP, C-FAR and others protested in the streets. City and state health departments were feeling the political pressure, and Gov. James Thompson, after pressure from activists, needed to meet with the gays in "suits and ties." Among those who met with Thompson were Tim Drake, Gail Schiesser, Al Wardell and Paul Varnell.

Each of these battles was being fought on many fronts: the work to stem the tide of bad AIDS legislation, increase AIDS funding, allow safer-sex messages on buses and trains, push for access to low-cost AIDS drugs and fight for more AIDS beds for women. Chicago hosted national AIDS demonstrations, stopping traffic in the streets along march routes and laying down beds in front of the Cook County Building. Chicago activists also traveled around the country to protest at the 1988 Democratic National Convention in Atlanta and at events in Washington, D.C., New York and San Francisco. Meanwhile, political gays worked the corridors of power.

When Richard M. Daley took over as mayor, he inherited a community already on edge about failed health department policies and people. Daley was seen as not acting fast enough to increase AIDS spending, and protests occurred at City Hall and at a dramatic 1989 community meeting at the de facto community center, the Ann Sather restaurant on West Belmont Avenue. Danny Sotomayor, Lori Cannon and other AIDS activists confronted Daley wherever they could, and 46th Ward Ald. Helen Shiller and others were able to fight for more city AIDS funding. Daley eventually repaired his reputation among most gays; however, many AIDS activists, including Sotomayor, did not live long enough to see that happen.

But no matter how media-savvy and creative ACT UP became, the divisions in the community and within organizations were similar to those in society. ACT UP meetings were often long and heated. There were people living with AIDS and people fighting for them. Diverse voices all came to the movement with their own agendas, and many could not separate out AIDS as their only cause. ACT UP was a very loose coalition, and members could choose what events they wanted to stage. More issues were added on, including national healthcare and pro-choice activism. Prominent members such as Danny Sotomayor became telegenic media stars, able to use their charisma to help the cause. But despite, or maybe because, of the amazing dedication of these activists, there was bound to be burnout. The energy could not be sustained. Some activists died, and others could not maintain the fever pitch. By the end of the 1980s, ACT UP was about to give way to Queer Nation, which itself was short-lived.

( Former Chicago ACT UP member Deborah Gould has an excellent book out about the ACT UP years, Moving Politics: Emotion and ACT UP's Fight Against AIDS. )

RAPID RESPONSE

Among other responses to AIDS was the important work of two doctors at Cook County Hospital, which saw a large proportion of the early cases in Chicago. Dr. Ron Sable, an openly gay physician, and his straight colleague, Dr. Renslow Sherer, founded the Sable/Sherer Clinic in 1983 to focus on treatment for people with AIDS as well as what was known at the time as AIDS-related complex ( ARC ) . The nurse who helped was Jim Lovette. Sable, who twice ran unsuccessfully for 44th Ward alderman, later died of AIDS complications. Sherer, meanwhile, has continued to work for many years on issues related to AIDS. He was also a key ally in the years when the state legislature was considering measures to stem the epidemic. As a straight, married man with children, he was happy to play a role for the community, someone to whom the elected officials could relate, but Sherer's opinions on the bills coincided with those of gay activists.

"It's an obvious fact to me that while the rest of the world did almost nothing and ignored AIDS—in fact, consciously looked the other way—best symbolized by the fact that our president [ Ronald Reagan ] didn't utter the word until September 1986 … people did nothing, with the exception of the gay community," Sherer told Outlines reporter William Burks in July 1987.

Gay doctors David Blatt and David Moore, partners in life and in their medical practice, were also on the front lines, treating hundreds of people with AIDS from their base at Illinois Masonic Hospital's Unit 371.

People with AIDS, or even those thought to have AIDS, were losing their jobs, and organizations such as the ACLU, Lambda Legal ( which eventually opened a Chicago office in the 1990s ) and individual attorneys and firms fought for their return to work. In 1987, a Cook County Hospital doctor was removed from treating patients because he had AIDS. After protests and a review, he was allowed only limited practice, according to ACLU attorneys. Airlines discriminated against ill passengers—or even those thought to be gay and "carriers." People were afraid of gay waiters. Even gay bar customers were afraid of sharing drinking glasses with those who "looked" sick. It was a very difficult time, and there were battles on dozens of major front lines. Dentist Larry Spang lost his job at a federal prison, which led him to found a Chicago clinic for low-income HIV-positive people.

In Chicago, the bathhouse controversy never reached the same crescendo—or outcome—as the closing of the baths in San Francisco. Chicagoans connected with the political establishment made it clear that unsafe sex was going on in many places, and that the goal was to educate men wherever they were—and that bathhouses were safer than parks and other cruising areas, because condoms could be handed out and safer-sex information posted.

People with AIDS also needed personal and individual support in many aspects of their lives. These included legal issues ( losing apartments, writing wills ) , basic needs ( housing, food, dog walking ) , psychosocial needs ( support groups, counseling ) and much more. Specific agencies took on targeted areas, while others were wider in their scope. Prevention was also important, and free condoms ( including those from the Reimer Foundation ) , safer-sex literature, and safer-sex demonstrations were the rage. Gays protested the Roman Catholic Church's attempts to stifle condom use. Lesbians even held a blood drive.

The need to raise money for all these endeavors also opened up a new era of more sophisticated fundraising than the gay community had ever seen. In combination with support from straight allies, gay and AIDS groups began hosting black-tie galas, tag nights at bars, drag shows, fun social benefits and more. AFC hosted a huge gala Sept. 27, 1987, at the Chicago Theatre, raising more than $1 million for AIDS groups. The event featured Angela Lansbury, Peter Allen, Jerry Herman, Colleen Dewhurst, Chita Rivera, Lily Tomlin ( via a film clip ) , Leslie Uggams, Oprah Winfrey, Mayor Harold Washington, U.S. Sen. Paul Simon, all of Chicago's gay and lesbian choral groups, and others. This "Show of Concern" was a co-benefit for AFC and the American Foundation for AIDS Research. Beverly Blettner, a Chicago socialite, chaired the entire event, which was sponsored by Marshall Field's, Outlines newspaper and others.

Other fundraisers that provided support included the annual Strike Against AIDS bowling events, the Proud to Run race, golf benefits, pie tosses, croquet tournaments, drag shows, bike rides and more. While there is no longer an AIDS Ride ( because of fundraising controversies ) , there are shorter bike benefits, a new and reinvigorated AIDS Walk, and a benefit for AIDS that piggybacks the Chicago Marathon. Foundations such as WPWR ( now Alphawood ) and Crossroads provided key early funding.

IMPACT ON CULTURE

There was also a cultural response to AIDS. In 1982,the Lionheart gay theater company presented the world's first AIDS play, One, by Jeff Hagedorn ( who died of AIDS in 1995 ) . The School Street Movement's Sex Police dancers educated people about AIDS. Keith Elliott, Danny Kopelson, Randy Duncan and others worked on an annual Dance for Life benefit for AIDS groups, an event still staged in 2011. The ranks of Chicago Gay Men's Chorus and Windy City Gay Chorus were devastated by AIDS, and they performed at many funeral services for their own singers and at benefits for AIDS groups.

Members of every creative profession, from photographers to filmmakers, dancers to choreographers, musicians to actors, were affected. Visual artists were also taken in their prime. Jon Reich and Gabor were two prominent local artists who were lost to the disease. Sotomayor was an editorial cartoonist who used his anger and wit to create cartoons that cut to the heart of AIDS issues in the late 1980s, in Gay Chicago Magazine, Windy City Times, and Outlines. He died in 1992, shortly before his partner, nationally renowned playwright Scott McPherson ( Marvin's Room ) , died of AIDS as well.

Among dancers lost to AIDS was Joseph Holmes, whose Chicago dance company continued after his death in 1986. At first his family did not want it to be known he had AIDS, so no mention of it was made at his huge South Side funeral service. Keith McDaniel, who had gone from Chicago to stardom in the Alvin Ailey American Dance Theater, died in 1995 at age 38.

Thing magazine publisher Robert Ford was also a pioneer in publishing, heading a 'zine that played a vital role for the African-American gay community in town. Ford died in 1994, shortly after his induction into the Chicago Gay and Lesbian Hall of Fame.

In the design community, the Design Industry Foundation Fighting AIDS ( DIFFA ) has a strong fundraising community, bringing straights and gays together to raise funds for a variety of groups. Season of Concern does the same among theaters and theater patrons, raising money at benefits and during special nights at various shows.

There are also many cultural pioneers still living with HIV and AIDS, although the disease takes its toll on their creative energies.

SHOWING THEIR NAMES

Another major event for the city was the first display in town of the NAMES Project AIDS Memorial Quilt panels, July 9—11, 1988, at Navy Pier ( well before that space was renovated to be a tourist attraction ) . While the quilt returned in later years, the 1988 display was seen as a pivotal coming-together of people from all communities and stood as a symbolic and somber reminder of those lost. Readers of the quilt's names included the Rev. Willie Barrow of Operation PUSH, who lost her son to AIDS, and Mayor Eugene Sawyer.

The coordinator for the local NAMES Project chapter, Peggy Shinner, told Outlines reporter Rex Wockner: "People look at this quilt and it brings the political and social issues surrounding AIDS to a very different level. … [ The ] quilt clearly functions as a consciousness-raising tool."

Organizers of the NAMES display stood in solidarity with C-FAR in refusing to take a $2,000 contribution from the drug company Lyphomed, the embattled maker of the drug pentamidine, at the time the most common treatment for the pneumonia striking persons with AIDS. The company had a monopoly on the drug and had raised the price 400 percent, sparking protests at its Chicago-area facility in suburban Rosemont.

The support of other corporations was welcomed, including WPWR-TV ( Channel 50 ) , WSNS-TV ( Channel 44 ) and the Navy Pier management itself. AFC and the Illinois Department of Public Health were hosts for the event. The Ann Sather restaurant and Marshall Field's placed some quilt panels in their windows during the display.

More than 1,000 volunteers helped with the NAMES Project, which included nearly 3,000 panels. An estimated 20,000 people attended. Donations totaled $50,000, shared among local AIDS service providers.

The Chicago display was part of a national tour that ended in Washington, D.C, in October 1988, on the anniversary of the quilt's first full display during the 1987 March on Washington. The quilt has returned to Chicago in small sections and in one more large showing in 1998, the quilt's largest-ever indoor display. NAMES Project founder Cleve Jones, of San Francisco, has returned to Chicago many times to promote the need to remember the names of those lost to AIDS.

The volunteer infrastructure that supported all these activities numbered in the tens of thousands. Whether it was sitting by someone's bedside in the Illinois Masonic Medical Center's Unit 371, delivering a meal for Open Hand, picketing the CTA, getting arrested at the Cook County Building or the American Medical Association, lobbying in City Hall or Springfield, coming out among the "Faces of AIDS" for a photo exhibit or book, or simply donating money, the effort to cope with AIDS in Chicago was a herculean task. Not every Chicagoan could rise to the occasion, and many thousands died. As a whole, the community accomplished much to be proud of.

In the coming months, Windy City Times will detail some of these important events and people who acted up and fought back against AIDS. We invite you to join us on this journey.

Adapted from Out and Proud in Chicago: An Overview of the City's Gay Community, edited by Tracy Baim, 2008, Surrey/Agate.

If you have story ideas for this series, email Tracy Baim: publisher@windycitymediagroup.com .


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