Ethnic Taboos Deepen Pain, Loneliness of AIDS Victims

Fear, ostracism and a lingering, lonely death often are the outcome of an AIDS diagnosis, but for minorities who contract the disease, the future is particularly bleak.

Cultural and language barriers, along with simple ignorance, make AIDS even more tragic for the minority patient, say counselors for the Shanti Foundation, a nonprofit agency devoted to helping AIDS victims.

“It’s paralyzing for those of us who are there to help,” said Dr. L. C. Calu Lester, a social psychologist with Shanti’s San Francisco office.

“In some cases people choose not even to include their families and just die alone,” Lester said in a recent interview.

According to the Centers for Disease Control in Atlanta, 25% of the known acquired immune deficiency syndrome cases nationwide occurred in blacks, who account for less than 12% of the total U.S. population, and 14% among Latinos, who account for 6% of the population. Fifty-nine percent of the cases were among whites.

A Devastating Diagnosis

The disease, which cripples the body’s immune system, is most likely to strike homosexuals, abusers of injectable drugs and hemophiliacs. It apparently is spread by sexual contact, contaminated needles and blood transfusions, and there is no known cure.

A diagnosis is devastating to anyone, but the homosexual Latino or black individual faces a tangle of social, cultural and religious barriers, Lester said.

“There is certainly a very big taboo (against homosexuality)in Latin culture,” said Marta Segovia Ashley, public affairs coordinator for Shanti, which originated in 1974 in San Francisco but has since opened offices in Seattle and Los Angeles.

“I’ve had knowledge of several clients . . . who were Spanish-speaking but who did not want to know another Spanish-speaking client because they were afraid that their community would find out about them,” she said.

Need for Native Language

That’s a painful situation, she added, because “when you’re in pain you have a tendency to want to speak in your native language.”

In both the Latino and black communities, Lester said, the strong influence of fundamentalist religions that condemn homosexuality makes AIDS a taboo topic.

Such cultural prohibitions have made it difficult for Shanti to recruit minorities to join its 250 volunteer counselors and to encourage relatives to give crucial emotional support to AIDS victims.

“Some families are very much afraid of their own children, their own brothers and sisters,” Lester said. He attributes the fear--”where you wash your hands seven or eight times a day”--to simple ignorance.

“I genuinely believe that in many black and Hispanic communities that the word is not getting out,” he said.

Drug Abusers Vulnerable

Drug abusers are particularly vulnerable to their own ignorance, Lester said. “We’re seeing black and Hispanic young men coming in with the diagnosis (of AIDS), saying, ‘We didn’t know we could get AIDS from sharing needles,’ ” he said. Some believe only gay white men are at risk.

So far in San Francisco, AIDS has been predominantly a white ailment--88.7%of the cases. Only 5.3% of the cases involved Latinos and 4.7% involved blacks, according to the city’s Health Department.

Ashley notes, however, that minorities are less likely to seek out social services than are whites, so many cases may be going unreported.

Lester’s efforts to reach minority communities include posting notices about the disease in public places, holding forums for community groups and calling for a commitment to minority communities by health and social service agencies.

The message, he said, is that AIDS is “not an issue of sexuality, it’s an issue of community health.”