A Latina Response to AIDS : Doctors, Nurses Fight Machismo, Secrecy

The words came haltingly, painfully, at first, then gathered momentum as the young Latinas found their voice.

Sonia: “The first thing I did was to get on my bicycle and go for a ride with my eyes closed. I hoped a car would hit me. My mom wasn’t much help. I wanted her to hug me, but all she did was judge me: ‘How many guys have you slept with?’ I’m 18. I never listened when they talked about it in school.”

Margaret: “When I found out, I felt scared, lonely. I couldn’t go to nobody. I have five brothers and two sisters, but the only person who sticks by me is my mother. My husband has it too. He’s in the hospital now. I had a little girl, but she passed away. It’s hard.”

Jennie: “I love my church. I know the archbishop, and I know how much he cares. But I have lost my son Eddie, and I cannot lose another child. I wish I could say (to them), ‘Just say no to sex.’ But I must protect my children, so I tell them: ‘If you are going to have sex, please, please, use a condom.’ ”

Words about life and death, acceptance and rejection. Frank words about sex, drugs, church, conscience, community, family and faith. Words, in short, about AIDS.

The words came tumbling out recently at a conference in Los Angeles entitled “Latinas and AIDS: Nuestra Respuesta .” The purpose of the unusual gathering of about 120 health-care providers, many of them Latinas serving other Latinas as doctors, nurses and health educators, was to develop nuestra respuesta --our response--to the AIDS epidemic in the Latino community.

They were there to learn how to save lives in a community where the cultural imperatives of heterosexuality and adherence to church teachings have made it particularly difficult to discuss the epidemic, much less ways to stop its spread.

Implicit in the name of the conference was the understanding that Latinos must develop their own response, that they cannot, because of myriad cultural differences, simply borrow the successful AIDS prevention models pioneered by white gay men.

It was a conference, participants agreed, that was long overdue.

“I am not here to bore you with the statistics,” said Dr. German Maisonet, who was in private general practice in East Los Angeles until being named chief of HIV services at Vacaville’s Correctional Medical Facility. (HIV--the human immunodeficiency virus--is believed to be the cause of AIDS.)

“I am tired of the statistics,” Maisonet added. “They are bad. They are getting worse.” Consider just a few:

* 38% of the babies and children with AIDS in Los Angeles are Latino, more than double the Latino share of adult AIDS cases. Many of the children contracted the virus from their mothers.

* Latino men and women accounted for 21% of the new AIDS cases reported in Los Angeles in 1989, compared to 12% of the cases reported before 1985.

* Latino AIDS patients in New York died an average of 19 weeks after diagnosis, compared to a 19-month survival period for all AIDS patients, according to a study conducted by the New York City of Department of Public Health. The figure for Latinas was even more appalling: death, on average, came 45 days after diagnosis. Observers generally blame poor access to health care for the disparity.

“This is a disease with so many emotional aspects that we find resistance to learning at all levels of the health care system--and at all levels of society,” said Dr. Peter V. Lee, chairman of USC medical school’s Department of Family Medicine, the conference sponsor.

“When I first learned that Eddie was sick, I had so much anger and guilt that I couldn’t even say the word AIDS ,” said Jennie Reyes, a secretary in the Los Angeles district attorney’s office. “Now, I know that talking about AIDS is in itself healing.”

“We have to go out into our community, to tell them: ‘This can happen. This can happen to your families.’ ”

“We must dispel the myth that AIDS is only a concern of men,” added Eunice Diaz, assistant professor of family medicine at USC and a member of the National Commission on AIDS. “We must educate our women. We must empower them to be assertive in protecting themselves.”

It is a job, Diaz acknowledged, that is easier said than done. The Latino culture is permeated from top to bottom with machismo and taboos against frank discussion of sex. Other allies of the virus in Latino communities include poverty, religious dictates against the use of condoms, and the language barrier.

Fear of deportation also keeps many undocumented aliens away from the health-care system during the early stages of HIV infection.

But the two-day conference focused not on roadblocks to prevention and treatment, but on what can be done to bring them down.

AIDS prevention programs fail because their designers fail to understand the distinction between providing information and educating, many speakers said. “We tell people: ‘Learn the facts. Learn the facts.’ Most Latinas can already recite the facts. But facts are only the base: learning them does not mean that they are capable, willing or able to deal with prevention,” said Milagros Davila, director of San Diego County’s prenatal care guidance program.

Latinas who suggest that their husbands or lovers use condoms, for example, could be asking for trouble. “They risk verbal or physical abuse at the hands of their partners,” said Dr. Aliza Lifshitz, a member of the Los Angeles County AIDS Commission.

Added Gloria Romero, assistant professor of psychology at Cal State Los Angeles: “How do we as Latinas negotiate safe sex, when a safe relationship may not exist?”

In a culture where men sometimes object when their wives or girlfriends suggest the use of condoms during sex, Davila advises her clients to raise the subject obliquely and avoid confrontation. She even supplies them with a list of typical arguments against condom use--and suggested responses. If, for example, a male partner’s response was “You don’t love me,” the woman might say: “That’s why I want to use it--to protect both of us.”

In order to save lives, Latino men and women must face squarely some simple truths, conference participants agreed. Among them, that bisexual behavior among Latinos is far more prevalent that commonly acknowledged.

“Go to MacArthur Park, and look at all the heterosexual men from Guatemala, from El Salvador, turning tricks with gay men to support their families,” said Maisonet.

“And then the horror comes up: No condoms. . . . No condoms! How long are they going to stay uninfected? How long are their wives going to stay uninfected?”

One of the most common misperceptions about Latinos with AIDS is that most of them contracted the virus from contaminated hypodermic needles. The truth is that men having sex with men accounted for 75% of Latino AIDS cases in Los Angeles, compared to only 6% attributed to intravenous drug abuse, according to Los Angeles County statistics.

Another 8% of the Latino AIDS patients in Los Angeles had both risk factors.

Because of its association with sex and drug abuse, AIDS has posed special challenges to organized religion. Too many times, in ministering to people with AIDS and their families, “we came with judgments before we came with the word of love,” said conference participant the Rev. Ignacio Castuera of the United Methodist Church.

That reaction “was a betrayal of the gospel,” Castuera added.

“People with AIDS are precious in the eyes of God. They have taught me things about spirituality I could never have learned in the church,” added Father Peter Liuzzi, a Carmelite friar who was recently appointed by Archbishop Roger Mahony as director of the Catholic Church’s ministry to gay men and lesbians.

In a discussion period after his talk, Liuzzi was confronted with searching questions from his audience about the church’s unyielding stand against the use of condoms to prevent AIDS. From his response, it was clear that he has pondered the question before.

“I am here as the representative of the Mother Church,” he said. “I fight with her, I argue with her, but I also embrace her. . . . It is very simplistic to talk about condoms. . . . I am forced to ponder and to pray and to reflect and to listen.”

Despite all the obstacles, participants agreed that, with conferences such as this, the code of silence about AIDS is being broken and progress can be made in stopping the spread of the virus.

“Don’t underestimate Latina women,” said D. J. Roseli, a caseworker with the Minority AIDS Project in Los Angeles. “They have a lot of strength.”

Consider Sonia, the 18-year-old who contracted HIV from her boyfriend and who moved into a group home for women with AIDS after her mother rejected her.

Sonia intends to spend the rest of her life speaking openly about her condition, and warning about the dangers of unprotected sex.

“Last year, when I was in school, I was going to graduate and go into the Air Force. I can’t do that anymore.

“I just want to go into schools, and to talk to teen-agers. I just want to make them understand. If they don’t want to listen, well, I tried. I tried.”