Ostracized in ‘Third Wave’ of Bias : Loved Ones Latest Victims of AIDS Discrimination

The anonymous notes started only a few weeks after Pat Reynolds’ husband, Don, died of AIDS. “You have no right to live around us,” said the first message slipped under the door of her Santa Monica apartment. “Move.”

A few weeks later, the second one appeared: “People like you shouldn’t live around normal people.” And another: “You’re contaminating our neighborhood.” Several weeks later, her son found the family dog poisoned.

The Reynolds family represents the newest tragic aspect of the AIDS epidemic: the “third wave” of AIDS discrimination.

The first targets of anti-AIDS bias were those suffering from the deadly disease. Following closely came gay men and members of other groups at risk of contracting AIDS.

The latest victims are people even more remote from the affliction itself--family members, lovers, nurses, physicians, counselors, anyone in frequent contact with AIDS patients.

And the evidence is surfacing all over the country:

--In St. Louis, the three children of AIDS patient Javier Vasquez were barred from school until they and their mother had undergone blood tests for AIDS antibodies.

--In Atlanta, an elderly woman sheltered her dying son in a tiny one-room apartment for nearly a year--telling no one--afraid she would be kicked out of her home because he had AIDS.

--In rural Sloan’s Valley, Ky., Stella McKee’s longtime dentist refused to treat her or her two daughters after her husband, David, a hemophiliac, died of AIDS.

“There’s a newspaper cartoon hanging in one of our offices,” said Mark Senak, legal services director for the Gay Men’s Health Crisis in New York. “It shows an employer sitting behind a big desk, saying to one of his employees: ‘Wilson, I understand your wife took a cab and the cab driver had a cousin who had a friend who knew somebody with AIDS.’ Wilson says: ‘That’s right.’ The employer says: ‘You’re fired.’ ”

Senak added: “It’s funny. But unfortunately, it’s also true.”

Fear Called Unjustified

Health officials agree that it is also unjustified. It is true that acquired immune deficiency syndrome, which is caused by a virus, is infectious. But the evidence is overwhelming that the disease, which cripples the body’s immune system, is transmitted through the most intimate sexual contact--with the exchange of body fluids, such as semen and blood--or by the shared use of unsterilized hypodermic needles. It also has been spread through transfusions of contaminated blood and blood products, although the heat treating of blood products and the testing of all donated blood have now made that risk slight.

“It is contagious, but only under certain conditions,” said Walter Dowdle, the coordinator of all federal AIDS programs. “And those conditions do not include casual contact.”

Estimating the magnitude of discrimination against family members and others close to AIDS patients is difficult. Because most AIDS patients are gay men, the disease carries a social stigma, and some people fear they will be shunned or ostracized if it is known one of their loved ones has AIDS. They frequently contribute to their own isolation by declining to share their grief with friends, neighbors and even other relatives.

Support Needs Support

“Someone in a crisis needs a support system--but the support system also needs support,” said Sally Jue, a clinical social worker with AIDS Project/Los Angeles who works with families of AIDS patients. “In this crisis, you can’t get any. If the support system of a person with AIDS is not getting support, it diminishes their capacity to give to the person who is ill. I’ve seen families devastated. They hate having to lie about what’s wrong with their children.”

Discrimination against relatives often goes unreported. “It’s really impossible to tell how widespread the problem is,” said Dr. Neil Schram, chairman of the Los Angeles City/County AIDS Task Force. “People with AIDS and their relatives who suffer this discrimination are often afraid to go public because they will probably risk greater discrimination.”

When the task force held public hearings last January on AIDS discrimination, Schram said, a hemophiliac with the disease refused to appear because he was afraid his girlfriend would lose her job if he were publicly identified. He sent his written testimony anonymously.

“The level of fear that exists in the community--in dealing not only with persons with AIDS but with their lovers, their relatives and their health care providers--shows how badly we have failed in educating the public,” Schram said.

Protection Cited

Many people do not realize that most ordinances banning AIDS discrimination protect those perceived to have AIDS because they associate with victims of the disease. “I assume there is a gap between what is occurring in the community and what is coming into this office,” said David Schulman, the Los Angeles deputy city attorney in charge of enforcing the city’s AIDS ordinance.

Moreover, some enforcement officials are more concerned about the AIDS patients themselves.

“It’s easier for me to be sympathetic to someone with AIDS whose life is collapsing around him and his employer fires him,” said Charles J. Eisnaugle, New York state AIDS discrimination project coordinator. “It is unfortunate when others are drawn into the whirlwind, but they do have health reserves to back them up. I sympathize with them--but find myself asking them to wait.”

Although the information about discrimination against family members and associates of AIDS patients is anecdotal, it also is substantial--and comes from coast to coast and from big city to rural America.

Nightmare Goes On

In Sloan’s Valley, Stella McKee’s hemophiliac husband, David, died of AIDS on Oct. 22, 1984. But the nightmare did not end there.

Even though she and her two daughters, Becky, 13, and Johnna, 5, have been tested for exposure to the AIDS virus and found negative, their family dentist will no longer treat them. A nursery school balked at admitting her younger daughter. When McKee decided recently it might be better to move out of Kentucky, her older daughter took an overdose of tranquilizers. Since the attempted suicide, the McKees have decided to remain in the area.

“Since David’s death, I’ve become a homebody,” said McKee, 36. “I sit in the house 24 hours a day with the drapes closed. I have no visitors. Rather than have people stare at me, I stay in. This is not a big city. It’s just small country. Country people are different. David’s was the only case of AIDS in this county. Everybody knew. I became so paranoid about the disease, I’d rather stay in than face anybody.”

But, she said, she has insisted that her daughters “never ever be ashamed of their dad’s disease--to be proud of their daddy.”

Daughter’s ‘Very Bitter’

“My 13-year old is very bitter,” she said. “I’d sit down and try to explain to her: ‘Hold your head high. Regardless of how people treat you or what they say, hold your head high. There’s nothing wrong with you, and there’s nothing wrong with me.’ ”

The local school board recently convened a meeting to talk about AIDS, she said, and she was again required to produce medical statements certifying that she and her daughters were in good health.

‘People Are Confused’

“You have to prove it every day, and still people are so confused about the disease,” she said. “Twenty years ago it was cancer, and you didn’t touch cancer patients. Now it’s AIDS, and you stand 20 miles away from them. People are so afraid of the unknown. Unless the state starts educating people, they are never going to understand--and we’re not going to be the only family that’s having this problem.”

She paused and continued: “If David had not gotten AIDS and somebody else in the community had, I might have had the same reaction, I don’t know. His illness forced me to educate myself. I had to learn what others have not.”

Discrimination, however, is not confined to small towns, where AIDS cases are rare and people have little awareness of the disease.

In New York, a woman whose boyfriend had died from AIDS told one of her colleagues at work, according to Eisnaugle, the state’s AIDS discrimination coordinator. Management asked her to confirm the rumors surrounding her boyfriend’s death and ordered her to take the AIDS antibody test. When she refused and filed a complaint with the state, the company backed off.

When Los Angeles resident Vasquez was diagnosed last December, he told his former wife, who lives in St. Louis. She in turn confided in a close friend, one of her son’s teachers. “The teacher went to the principal, the principal went to the superintendent and she was notified by phone that the children couldn’t come back to school until they had all taken the test,” Vasquez said. “I was really very angry. They had no right to do that. But, by the time I found out, it was done.”

Helen Kushnick, also of Los Angeles, had a similar fight with her daughter Sara’s nursery school while Sara’s twin brother, Sam, was dying of AIDS. Both had received blood transfusions as infants, but only the little boy contracted the disease. Almost three years after Sam’s death, Sara remains healthy.

“Two of the people from the school arrived at the hospital where Sam was,” Kushnick says. “ ‘We have to talk to you,’ they say. ‘You can’t bring Sara to school tomorrow.’ I went crazy. I had been told a few days before that Sam had AIDS and there was nothing they could do about it. It was a nightmare situation--and in walk these two people who tell me I can’t bring my daughter to school.”

Sent to Different School

The Kushnicks, who eventually enrolled Sara in a different school, sent her to stay with a close friend in New York during this tumultuous time. “The hardest thing in this whole two weeks was watching Sara drive away from the house,” Kushnick said. “She went to New York and Sam died four days later. I had two children--and all of a sudden I had none.”

Such discrimination is not limited to family members. It has been directed against lovers of AIDS patients and their health care providers as well.

In Los Angeles, nurse Rich Vaughn, who began treating AIDS patients three years ago, had to fight his supervisors when they sought to prevent him from a tour in the maternity wing.

AIDS Project/Los Angeles social worker Jue said people have telephoned her boyfriend and asked: “How can you let her work there? Aren’t you afraid she’s going to bring it home?”

Senak, of the Gay Men’s Health Crisis in New York, said one of the organization’s healthy volunteers “was fired from his job as a waiter because he was a volunteer here. They thought he would catch the virus off a telephone.”

Evictions Seen as Common

Thomas B. Stoddard, executive director of the Lambda Legal Defense and Education Fund, said lovers of AIDS patients in New York frequently have been evicted from their apartments after their mates died. “It’s quite common for a landlord to try to evict the survivor, particularly in New York City where they try to use every opportunity to evict tenants to subvert rent control laws,” Stoddard said.

Stoddard said the families of AIDS patients also often discriminate against what he calls “the forgotten partners” of gay relationships because of their inability to accept their loved ones’ homosexuality. He cited the recent death of a member of his group’s board of directors who had lived for many years with another man.

“After he died,” Stoddard said, “his parents placed an obituary in the newspapers which failed to mention the true cause of death and failed to mention the surviving partner. They conducted a memorial service which totally neglected the man’s partner and entirely omitted the man’s important work in gay rights. It was cruel, and it did violence to the memory of their son.”

‘You Have to Lie’

Jaak Hamilton, a Los Angeles psychotherapist who counsels many AIDS patients, their lovers and families, agrees that AIDS prejudice often forces people to distort their lives. “If a spouse or a child dies, people get a lot of sympathy and time off,” he said. “But if your lover dies from AIDS, you have to lie and make up excuses.”

In Los Angeles, Barbara Cleaver, whose 26-year-old son, Scott, died from AIDS nearly two years ago, recently formed a “mothers’ network” to help families like her own cope with AIDS-related discrimination and other problems. She said she still hesitates to discuss her son’s illness with friends and associates.

“I’m a hairdresser, and I still haven’t told my clients Scott was gay or had AIDS,” she said. “I couldn’t take the chance of losing my clients. All the time, I had to live a lie--I just told them he had cancer. I had no one to talk to.”

Support Lacking

Another woman whose gay son died of AIDS refused to be identified, fearing it would increase the strains on her already tense second marriage. She said her husband--not her late son’s father--failed to support her while her son was ill or after he died.

“He would call my son a faggot,” she said. “I have to go into a closet and cry. He’s denying me my grief. One night I was watching a television show that reminded me of my son. My husband came home and asked why I was crying. When I told him, all he said was, ‘What’s for dinner?’ ”