Before Charles Willis was diagnosed as having AIDS, he thought it was a white homosexual disease.
”You know how in college it was almost always the white kids who got mononucleosis, never the black kids?” Willis said. ”Well, I thought AIDS was like that, a disease that white folks got.
”Then I knew a few black guys that got it, and I thought they must be snow queens-black guys who like white guys,” he said. ”I thought it was a white disease until it hit me. Then I thought, `Wait a minute. I never had nobody white. Why do I have AIDS?` ”
Willis` situation illustrates a major problem in dealing with AIDS: It is often perceived as a disease that afflicts only gay white men.
But AIDS is hitting the black and Hispanic communities in numbers greater than what would be expected in terms of population, and this trend has raised fears that AIDS will come to be regarded as a minority group disease that will be largely ignored by the white population.
In Chicago, 24 of the 49 new AIDS cases reported by the city`s Health Department in October-nearly half-were among blacks, even though they make up 41 percent of the city`s population. The percentage of blacks among new AIDS cases in Chicago has risen to 37 percent in 1987 from 25 percent in 1984.
Nationwide, 25 percent of the 45,436 cases identified so far were among blacks, though blacks account for 12 percent of the population.
The misperception of AIDS as only a gay white man`s disease means a lack of educational programs, social services and health care for minorities, said Thom Dombkowski, director of Chicago House, a residence for homeless people with AIDS. In addition, he said, many of the AIDS victims among blacks and Hispanics are intravenous drug users and that group is difficult to reach.
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Preventing the transmission of AIDS through IV drug abuse requires addicts to change their habits. It is not uncommon for drug addicts to share needles, a practice that helps spread AIDS.
AIDS also is spread by black men who engage in both homosexual and heterosexual activity. Such men do not benefit from educational programs intended for gay men, said Tim Offutt, director of Kupona Network, a black gay organization on the South Side that serves AIDS victims, because ”they don`t think of themselves as gay.”
Willis, 32, has two sons, aged 12 and 14. The eldest son`s mother was 13 when the baby was conceived, Willis said. ”She didn`t want to be married,”
he said. ”She just wanted to have a baby, and she thought I was cute.”
Willis married the mother of his second child. ”At that time, I still didn`t think of myself as a homosexual even though I had homosexual experiences.”
Offutt said that ”bisexuality is more common among black gay men than white gay men because of the perception of gayness among blacks.”
”If you are gay, you are not an upright black man,” he said. ”Acting as a macho man is how you prove your self-worth, because you don`t have another premium for maintaining that image. You have to play the game and be seen as a straight person in black society.”
To reduce the risk of contracting and spreading AIDS, Kupona encourages the use of condoms. But some blacks perceive condoms and other forms of birth control as genocide-the white man`s way of keeping down the black population, Offutt said.
The reluctance to use condoms even carries over to gay sex when there is no chance of a baby being conceived ”because black gay men are so conditioned by their black experience,” Offutt said.
”Genocide fits in with the history of racism and oppression,” Offutt said. ”The message to use condoms has to come from someone who is black. You tell them the decision to use condoms is theirs. `Yeah,` I sometimes say,
`this may be genocide. But what is the alternative?”`
Experts stress that the most effective way to reach blacks is through an aggressive educational campaign that is culturally and racially sensitive.
”A lot of people don`t read or won`t read, and they are vaguely aware of what they see on TV,” said Terra Thomas, vice president of the Human Resource Development Institute, a health and human services organization on the South Side. ”Unless you have programs geared to address them from their own cultural context, they won`t work.”
More social and medical services are needed on the South Side and West Side where most Chicago`s blacks live, Thomas said. ”There is a scarcity of AIDS-related services to begin with, but when you look at the black community, it is virtually zero.”
Evelyn Jackson, 55, a secretary at a United Methodist Church on the South Side, could not find an AIDS-related support group in her neighborhood after her 26-year-old son, Michael, died of AIDS more than a year ago.
”I needed people to talk to,” Jackson said. ”I was about to go off the deep end.”
”I called the AIDS hotline and they told me about the AIDS Pastoral Care Network,” Jackson said. The network is an ecumenical group that provides counseling for persons with AIDS and their families.
”They were about to start a bereavement group. I drove from 7800 south to 2000 north once a week to be in the group,” she said. ”There was nothing for me on the entire South Side. I was the only black in the North Side group, but I didn`t care. I wasn`t black or white. I was just a grieving mother, and I finally could talk about Mike`s AIDS.”
Jackson, who cared for her son until he died, cooking his meals and sleeping overnight at his apartment, told only her closest family members about her son`s illness, and even when he was buried, she did not tell the minister about the AIDS for fear of rejection.
Willis experienced that rejection from his own family, who could not deal with the fact that he had ”a gay disease.” When he was ready to be released from the Hines Veterans Administration Hospital about a year ago, he ”had no place to go.”
”The only places that would take me were the Pacific Garden Mission or the Salvation Army. The doctor said he wouldn`t discharge me to either place, because Pacific Garden Mission is only open at night and at the Salvation Army, you have to work,” he said.
If he were well enough to work, Willis said, he would go back to the Illinois State Psychiatric Institute where he was employed as a mental health technician before he became ill.
”I called my mother and said, `I have nowhere to go,` ” Willis said.
”She said, `Well, you pray to the Lord, and get yourself straightened out, and then we`ll see.` She couldn`t say, `Don`t come home,` but she didn`t say, `Come home,` either. I was blown away. No one wanted to be bothered with me.”
The AIDS Assistance Foundation put Willis in a hotel for a month while trying to find a place for him until a room opened up at Chicago House.
”I called the hotel `roach central,` ” he said. ”I would wake up at night and feel things crawling on me and have to shake out my blankets.
”It was so horrible, because I`d struggled all my life to get off welfare, to get away from that ghetto,” he said. ”I finished high school and went to college and kept a B-plus average. I held good jobs. And now it was like I was back on ADC (Aid to Dependent Children) again.”
More than half of the residents at Chicago House are black or Hispanic, said Dombkowski, the director. ”They are most likely to have no health insurance and no savings. They come here.”
Minorities also are more apt than gay white males on the North Side to end up at public hospitals or community hospitals where the employees have not been well-educated about their own risks regarding AIDS.
”The nurses and doctors on the AIDS team at Cook County were great, but some of the others were awful,” Evelyn Jackson said. ”When the orderlies would have to transport Michael, they would snicker and point. I would go into his room and his sheets would be wet. His gown would be wet. No one had taken care of him.”
Willis, who was diagnosed with AIDS in January, 1986, recalls experiences at Hines that made him contemplate suicide.
”One time I was very hungry,” Willis said. ”It was time for lunch and there was no food. I walked out of the room and there was my tray. The food was completely cold. I started to cry. It hit me that this was what I was going to face the rest of my life-being shunned, being rejected, no one wanting to touch me.
”A maintenance man came by and asked me what was wrong,” Willis said.
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”I told him. He put his hand on my knee and said, `I`m here. I`m touching you. I`m going to take your food in for you and I`m going to mop your floor. I`m not afraid. These people are just ignorant. Now stop crying.”`
”Shortly after that I tried to kill myself,” Willis said. ”I stole a needle that a nurse left in my room. I was going to inject myself with anything I could find that was lethal. They put me in a psychiatric ward on suicide prevention where I had to be checked every 15 minutes.
”One time an X-ray technician said to me, `Oh, I`m not going to take your X-ray because you have (AIDS),” Willis said. ”The next day I saw her in the hall and I went over and breathed on her. It made me so mad. I was hurt. I was angry. I didn`t know if I wanted to cry or curse.”
Blacks and Hispanics are also more likely than whites to end up on welfare and be subjected to further indignities.
”We have had social workers go with our residents to the welfare office and the treatment they receive from case workers is atrocious,” Dombkowski said.
”They often put a tissue over the application form, or pick it up with a tissue,” he said. ”That totally demoralizes the person with AIDS, almost like putting a bell around his neck and saying `unclean, unclean.”`
Jackson and Willis criticized the black churches for not getting more involved in AIDS education. ”There is so much prejudice in the churches,”
Willis said. ”This is not a plague from God sent down to kill all the homosexuals.”
Samuel B. Rawls, a minister at the Congregational Community Church on the South Side, said only about 20 percent of the black ministers in Chicago are educating their congregations about AIDS.
”Some of the bigger people who need to be talking about the condition aren`t saying anything about it,” Rev. Rawls said. If prominent blacks such as Rev. Jesse Jackson or athletes Walter Payton and Michael Jordan addressed the issue ”people would stop and listen,” he said.
Willis said he wants to start a religious support group for black men with AIDS. ”In too many groups, all you hear is the `poor me`s.` I`m tired of the `poor me`s.` It`s time to figure out what to do-either to look inside myself to find the strength to keep going or to seek a higher consciousness.” Willis also is trying to write a book about his homosexuality. A typewriter sits in the middle of a desk in front of a window. Nearby, a small refrigerator is stocked with orange juice and cola. A beeper buzzes every hour to remind him to take some of the 32 pills he must swallow each day.
He is breathless after climbing the stairs to his third-floor room.
”I hate this,” he said. ”I`m 32 years old and stairs shouldn`t do this to me. I hate having to give up everything, my job, my lifestyle, my respect- everything.”
When Willis moved into Chicago House a year ago, eight men with AIDS were living there.
”I`m the only one left,” he said. ”All the rest have died. The first time someone died while I was here, it was Aaron. The night before he died, he fell out of his bed.
”I got him back in bed and told him, `Hang on. Someone will find a cure for this.` But he looked at me and said, `I can`t.”`
”The next day, he died. It gets spooky here when someone dies. People go to their rooms. It gets very quiet.”
TUESDAY: AIDS and Hispanics.
baiduhai Chart; Source: Chicago Department of Health.