SIDA, sindrome de inmuno-deficiencia adquirida , is AIDS to the Spanish-speaking community, where the disease appears to manifest itself differently than it has among the Anglo population, targeting heterosexual families, not primarily gay men.
Norma Alicia Pino and Lourdes Arguelles, two Latinas who spoke Friday to 200 people at the first Hispanic AIDS Conference in Los Angeles, said AIDS affects different groups among minorities and that education among Latinos must be through women, who in turn will educate their families.
The two women summarized the situation of AIDS among Latinos:
They point out that the risk of AIDS among minorities is greater. Fourteen percent of those diagnosed with AIDS nationally are Latinos--and the same percentage holds true in the Los Angeles area.
Further, IV drug use is a primary mode of transmitting the disease, causing AIDS to affect predominantly heterosexual families, with parents infecting their offspring.
Adding to the problem of the spread of the disease, they indicated, are closeted homosexuality and conventional bisexuality.
In their presentation, Pino, a community educator with the Hispanic AIDS Education Project at California State University, Los Angeles, and Arguelles, Ph.D., a senior lecturer at UCLA's School of Social Welfare, offered a set of platicas (talks) designed to inform and educate Latino women about AIDS, so that they may serve as educators in their communities.
'Tradition in Latino Culture'
"It is a tradition in the Latino culture that the woman is a teacher," said Arguelles, a Havana-born woman who lived in Miami before coming to Southern California in 1978.
Pino and Arguelles showed a videotape of a Guatemalan woman with AIDS whom Arguelles had interviewed. She contracted AIDS from her first husband, who was a drug user. She did not know she had AIDS and later bore two children with the disease.
The woman, in her early 30s, also spoke at length about how she was rejected and ostracized by her family and her community.
"AIDS is a health-education issue and should be treated like that," said Pauline Mercado, Ph.D., director of the Hispanic AIDS Education Project and assistant professor of the department of counselor education at Cal State L.A., site of the daylong conference. "We put this conference together so people would get a sense of community and know who the people are who are working in this area (of AIDS education among Latinos)."
Mercado, who planned the conference, designed for representatives of agencies dealing with AIDS in the Latino community, added:
"AIDS education has to take on a different kind of approach (in the Latino community). There are cultural differences, insurance problems, job status and immigrant status."
Jose Martinez, Minority AIDs Pilot Care coordinator for the California Department of Health Services' Office of AIDS told the group: "We must work together. We cannot afford territorial disputes over who will serve AIDS patients. We must work together for community care, medical care and in legal and insurance services. We have to have early access to care for Latino families . . . Minority (AIDS) patients are diagnosed later and die sooner. The minority AIDS patient lives an average of 22 weeks. Whites live an average of 22 months."
Jennie Reyes, a member of Mothers of AIDS Patients, had come to the conference to meet people involved with AIDS education in the Latino community, she explained. Her son, Eddie, now 31, she said, was diagnosed with AIDS Nov. 19, 1985, when he was living in San Francisco, where he worked as a gourmet cook.
"I was hysterical when I first learned Eddie had AIDS," Reyes said. "I called my priest and he came over. It took him a couple of hours to calm me down. I couldn't even mention the word AIDS . It was extremely difficult and very painful. For months I was in a complete state of denial . . . I knew my son was gay. That was no problem. I never have asked him how he got it. The point is that he did get it, and you have to be with him, support him and love him. In our culture, we still do go to our children. That is very important to Latino families."
Reyes, a secretary in the Los Angeles District Attorney's office for 17 years, now counsels other Latino families who have had diagnoses of AIDS among relatives, but said that counseling is difficult because of the Latino culture.
"It's the way we were raised," she said. "We can't talk about sex even in the home. And whatever happens in the home stays in the home. The tragedy of all this is that it can happen to anyone, and so many families are not able to tell other family members or co-workers or friends if it does. It is really really sad to carry this burden. There's a tremendous amount of guilt and anger with this disease. I felt I was a failure as a mother, as a single Catholic parent. I was even mad at God."
"What you see here today are agency people," said Eunice Diaz, director of health promotion and community affairs at White Memorial Medical Center, who was one of the conference's presenters. "The community won't come to something like this. They feel if they go it might be an admission that someone in the family has AIDS or be admitting they are at risk."
Diaz and her husband, Dr. Julio Diaz, a Los Angeles pathologist, have been doing volunteer work for five years with Latino families who have children or relatives diagnosed with AIDS.
"Our approach has been a personal approach to small groups in the home or church or school," she said. "The church is the symbol of our culture, religion and moral values. It has a very important role to play here. It transmits culture, ethnic identity and pride. It's values must be respected and honored. The church is not the place to disseminate safe sex practices or how to use a condom.
"When we talk to the community, Diaz said, we say you must know about this for your children and your family. To Hispanic men, who are macho, we say you must do this for your wives or for your girlfriend. We are very family-oriented."
The Latino community, Diaz explained, is extremely homophobic. "It is very very shameful to be openly gay in the community. But that doesn't mean people don't know about it." "I have often said that when a Latino woman is notified that her son is dying of AIDS, she says: 'I hope he got it from drug use, not from being gay."'
Arturo Olivas, who runs Cara a Cara, a Latino AIDS Project at the Hollywood Sunset Community Clinic, spoke about the difficulty of introducing safe sex practices among the Latino community.
"It's because of the barriers of men using condoms," he said. "You introduce condom use into the family and they think it shows a lack of trust or a lack of love toward the partners. For women to initiate safe sex, it's like waving a red flag. Men will say (to the women) they're dirty or promiscuous, or they don't trust them. We're trying to give a reverse message. Teaching them that if they do love themselves and their partner, they will wear a condom."
After Olivas finished his presentation, an older Latino man came up to talk with him. After the man left, Olivas said: "That took a lot of courage for him. His only son has AIDS, and he came to ask me how he could volunteer to help educate others. I told him, 'You are a natural educator. People will listen because they listen to their elders. And because you can tell them about your son.' He said he wanted to help and gave me his phone number. It broke my heart."