Just a few of the key faces of AIDS ...
In looking through the photo files of Outlines/Windy City Times, we pulled out a few of the more memorable smiles of Chicagoans struck down by AIDS. These faces represent just a few of the thousands lost to AIDS.
According to the Joint United Nations Programme on HIV/AIDS ( UNAIDS ) , AIDS has killed an estimated 19 million people worldwide, including 425,000 Americans. There are roughly 34.3 million people living with HIV or AIDS around the world, about 1 million of them in the U.S. Experts estimate that many of those with the virus haven't been tested and don't know that they have it, easing the disease's spread. At least 40,000 Americans become infected with the virus each year, about half of them under the age of 25. According to researchers, about two young Americans become infected with HIV every hour.
Closer to home, the Chicago Department of Public Health estimates that more than 17,200 Chicagoans have been diagnosed with AIDS since its beginning. About 28,000 Chicagoans are currently living with HIV/AIDS, and another 2,000 are infected with every year. An alarming 7,000 to 8,000 Chicagoans with HIV are unaware of their status because they haven't taken the time to get tested. Men who have sex with men ( MSMs ) represent the most prevalent mode of transmission for HIV in Chicago, followed by injection drug users.
Over the next few issues, Windy City Times will offer a retrospective of the first 20 years of the virus, from when the mysterious illness was dubbed the Gay Plague or Gay Related Immune Deficiency ( GRID ) by the medical establishment, to today, when an estimated 33% of young, urban Black, gay men test positive for HIV. We'll talk to medical professionals, service providers, people living with and affected by the virus and activists and advocates.
This week's installment features Lori Cannon, director of Open Hand Chicago's Groceryland; local author and writer Sanford Gaylord; the AIDS Foundation of Chicago's first executive director, Marcia Lipetz; and Modesto "Tico" Valle, executive director of the NAMES Project/Chicago.
If you or someone you know would like to be interviewed for the series, contact Karen Hawkins at ( 773 ) 871-7610 or email outlines@suba.com . We also welcome memories and tributes to those who have been lost to this disease.
LORI CANNON
Lori Cannon, director of Open Hand Chicago's Groceryland, 3902 W. Sheridan. Open Hand operates six grocery centers and a home-delivered meals program, dubbed Meals on Wheels by its volunteers. The agency delivered meals to its first 35 clients on Christmas Eve 1988. Within its first year, that number grew to 300. Today, the agency's 300-400 volunteers serve 1,400 clients a week, 98% of whom come to one of its grocery centers. The agency has never had a waiting list, something Cannon is particularly proud of. This year, Open Hand will serve its 4 millionth meal.
Cannon's best friend was cartoonist Danny Sotomayor, who she described as the city's most explosive AIDS activist. Sotomayor died in 1992, and Cannon has worked to keep his memory alive and his works in the community.
What significant changes have the last 20 years brought?
"The heartbreak of the whole epidemic is that in the beginning, it affected the populations that people considered disposable—faggots and junkies." At Open Hand, "we make no judgement how anyone got sick—everyone deserves to eat.
"There's a lot of pride and satisfaction in knowing you are breaking bread with someone. It's very personal."
Cannon noted the strong impact of the 1987 March on Washington, from which "everyone came home totally transformed." AIDS service organizations and agencies began springing up, including the NAMES Project, Open Hand, ACT UP, Test Positive Aware Network and the AIDS Alternative Health Project.
"The community was being devastated, and people had to do something with their outrage.
"PWAs ( People with AIDS ) are living in a relatively more hopeful time now because of the visionary gays and lesbians who were the hardcore street activists. It's sad that the message of prevention still isn't getting out ... with young men and women.
"Especially here at Groceryland, when a new client comes in for the first visit, and they're youngsters ... it didn't have to happen. It could've been prevented.
"There's a lot of history ( but ) there's a general malaise out there when it comes to AIDS activism."
What hasn't changed?
"Maybe the meds are less toxic, but the side effects are still paralyzing.
"The discrimination is still there, the stigma ... still remains," she said. "There's all this veiled and cryptic bigotry that remains.
"It's been 20 years, but I would say, how does that translate into AIDS years. The isolation, the prejudice—those are all devastating side effects.
"AIDS has never been a priority with the government. Twelve years went by ( in the beginning ) , and it was lost opportunity and it was time that was thrown away.
"This is not a chronic, manageable illness."
The next 20 years?
"Sadly, I'm predicting there will be no cure by then. Hopefully, there will be treatments that will allow people to live comfortably. I would like to see a reduction in the stigma. I would hope that there's a generation of activists out there ready to act up and to do what's right for what they believe in.
"Even with the hardships, there is still the hope that the next generation does not have to endure the isolation and hateful prejudice. With all the immeasurable loss and the inestimable devastation, the first 20 years sucked the life right out of us. It's very hard to have a sense of future; I think living in a war does that ... . I would say, ask me in 20 years."
SANFORD GAYLORD
Sanford Gaylord is a BLACKlines columnist and actor with A Real Read, Chicago's African-American lesbigaytrans troupe. Gaylord was diagnosed as HIV positive in 1989. He began working on AIDS issues artistically in 1994 and professionally in 1995, when he started at Test Positive Aware Network. He moved from there to Roseland Hospital, and he is currently a counselor on a vaccine study at Howard Brown Health Center.
What significant changes have the last 20 years brought?
"The most significant change is that people realized that this wasn't just a gay disease. That this wasn't just something that white gay men had to deal with.
"I was one of the statistics in 1989 when the Black numbers started to rise. I, in my ignorance at 24, thought that it was just a gay white boy thing."
Gaylord noted the shift in the epidemic to communities of color, calling the situation "genocide."
American AIDS activists are focusing efforts on Africa, he said, while people of African descent in their own country are suffering.
"I know that there needs to be help in Africa, ( but ) ... we have the potential of losing a whole generation and possibly a race here. ... If we don't take care of home, how can we take care of anyone else?" he said. "Clean up your own damn house."
"There are seriously people still sharecropping in Arkansas," for example, who are in desperate need of AIDS education and prevention.
What hasn't changed?
"People are still being infected. People are still bathing in denial about HIV and AIDS."
The next 20 years?
"I don't know. I can only hope that HIV and AIDS might be more manageable and that there are people of color still around.
" ( I hope ) that there can be an effective vaccine. It took 40 years for a polio vaccine."
He also cited the need for less toxic meds. "Is it really that much better to live a little longer and have system failures?"
He pointed to the fallibility of the current medications, saying that research indicates that there are sanctuary sites in the body, such as the brain, ovaries and testes, that drugs may not reach.
MARCIA LIPETZ
Marcia Lipetz, currently executive director of the WPWR-TV Channel 50 Foundation, was the first full-time executive director of the AIDS Foundation of Chicago ( AFC ) . She served with AFC from March 1987 to December 1990. When she started, the organization had $40,000 in grant money, donated office space, two boxes of files, a board of 10-12 people and a service providers council of 10-12 people. When she left in 1990, the agency had 13 staffers and 75 people on the service providers council.
What significant changes have the last 20 years brought?
"I first got involved ( in AIDS work ) in about 1985. That was pre-Ryan White, pre-Rock Hudson. The virus was called HTLV-3.
"The only services that existed came out of the gay male community and Cook County Hospital.The agencies that we know and love today didn't exist. No Open Hand, no AIDS Foundation of Chicago, no Chicago House.
"Gay men were being diagnosed and dying in 18 months. African-American women were being diagnosed and dying in four months.
"There was clear-cut and almost immediate discrimination—in jobs, in housing and insurance, access to medical treatment ... . There were no legal protections.
"1985 was a bellwether year. Between 1985 and 1987, that's when a lot of organizations got started.
"Services were needed. People watched friends ... get sick and die and started organizations.
"It's very, very difficult work to do and sustain over a long period of time because in the early days you got sick and died ... . It was very difficult to continue to be involved when you knew what the end result was going to be.
"Huge numbers of women were involved in the work. In the early days, it was a disease of nurses and social workers. It was a very interesting time in the development of relationships between gay men and lesbians. At the time, gay men and lesbians weren't always ... on the same page.
"You did what you needed to do. You did what needed to be done.
"ACT UP was phenomenally important in terms of raising the bar and raising expectations. They allowed organizations like the AIDS Foundation to slide in and do the work. ... We absolutely needed the ACT UPs of the world, the Danny Sotomayors of the world. As the disease changes, what those ( AIDS service ) organizations do has changed."
What hasn't changed?
"Transmission. Even knowing what we know about transmission, people are still contracting HIV.
"It isn't like a vaccine—you have to do the prevention over and over again. ... Every couple years we see a new round of infections.
"In the gay community, it's certainly part of the landscape, but when you see trends like barebacking, it's just frightening."
It's also frightening, she said, "when states refuse to pass needle-exchange legislation."
The next 20 years?
"Wouldn't it be lovely if there was a vaccine, and this was a completely preventable circumstance? Minimally, it will become even more of a manageable chronic condition."
The meds will hopefully be less toxic and could be taken "without the kind of rigor that's required now."
We've come a long way in the past 15-20 years, she said, and we hopefully will go a long way in the next 15-20. Lipetz also predicted the end of HIV-specific organizations and clinics, saying that they either won't exist or will have expanded their focus to include other illnesses.
TICO VALLE
Modesto "Tico" Valle, executive director of the NAMES Project/Chicago, 3732 N. Broadway. In 1990, Chicago activists hosted the world's largest indoor display of the AIDS Memorial Quilt at Navy Pier. By 1998, there were 400 quilt panels out of Chicago, and the city submits the third-largest number of panels, after New York and LA.
What significant changes have the last 20 years brought?
"One thing that hasn't changed is that we don't have a cure.
"The switch of the epidemic moving from gay males to mainstream America ... really struck me because those are the panels we get now here at the office.
"At the beginning, it was a lot of males who came through who needed a hug and needed an ear to listen to them." They came to the center to make their quilts because they weren't getting any support at home. Now people have more support from their families, and it's parents and other relatives bringing in their panels, Valle said.
"I feel that the older generation of gay males have really taken care of themselves, but young men ... are putting themselves at risk," by bare-backing or engaging in unsafe behavior. I got involved because a friend said it would be a one-time thing." After the Quilt display in 1990, "we realized it was not going away."
What hasn't changed?
"People are still being discriminated against, and people are still losing their jobs. The prejudices and the bigotry still exist. With the work we do here at the center, you hear those stories." Stories of people being fired and turned away by their families, he said.
The next 20 years?
"Although people are still living longer, the next onslaught is on the way. We just went through phase one of the epidemic. We need to rally people again. We've kind of lost 10 years of activism."
