Minority AIDS Victims Confronted With Dual Battle: Disease, Ostracism

Fear, ostracism and a lingering, lonely death are often 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 acquired immune deficiency syndrome 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 phone interview..

Percentage Breakdown

According to the Centers for Disease Control in Atlanta, 25% of the known AIDS cases nationwide occurred in blacks, with 14% among Latinos. Whites made up 59% of the total 12,736 cases compiled through Aug. 26, spokesman Bob Alden said. The other 2% were unknown or other racial backgrounds, he said.

The disease, which cripples the body’s immune system and usually ends in death, 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 for minority victims it means a “proverbial double- and triple-bind situation,” Lester said.

As a minority within a minority, the homosexual Latino or black faces a tangle of social, cultural and religious barriers, he said.

Big Taboo

“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 and has since opened offices in Seattle and Los Angeles.

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

The situation is not much better in the black community, Lester said. In both cases a relatively strong hold by fundamental religions that condemn homosexuality makes AIDS a taboo topic, he said.

The Latino AIDS victim may face the additional problem of a language barrier, Ashley said.

“When you’re in pain, you have a tendency to want to speak in your native language,” she said.

Hard to Recruit

In addition, the cultural prohibitions have made it difficult for Shanti to recruit minorities among its 250 volunteer counselors.

Perhaps most critical to the AIDS victim is the support of his immediate family, Lester said. However, the minority victim is more likely to encounter fear than compassion.

“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.

The homosexual media and newspapers are the primary vehicles for informing the public, he said, and the word is “not getting into Third World communities, specifically black communities.”

Besides homosexuals, drug abusers are particularly vulnerable to the lack of knowledge, Lester said.

‘We Didn’t Know’

“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 homosexual white men can contract the disease.

Lester blames public health agencies, and even foundations such as Shanti, for a failure to communicate the risks of the disease to minority communities. Because the rate of AIDS among minorities is lower than among whites, health agencies see a lesser need to educate minorities about the risks of the disease, he asserted.

“I’m not going to jump up and down and yell racism--yet,” Lester said.

However, he said he is concerned the white-to-minority ratio may shift dramatically if programs to educate minorities--and services to treat those who contract the disease--are not instituted soon.

Compounds Problem

The problem is compounded by the fact that minorities are simply less likely to seek out social services than are whites, Ashley said. Consequently, many cases among minorities may be going unreported, she said, meaning the figures may be inaccurate.

Of the 1,310 AIDS cases reported in San Francisco through July 31, only 5.3% occurred in Latinos and 4.7% in blacks, said a Health Department spokeswoman. Whites accounted for 88.7% of the cases, she said.