Still Stigmatized

When Ofra Haza, the 41-year-old Israeli Yemenite singer, succumbed to complications of AIDS in February, she died under a heavy cloud of silence. But why? Was it because of the shame and guilt attached to the still stigmatized disease, or, as the Israeli media suggested, was there a darker, more sinister reason connected to her husband’s past?

Whatever the reason, it is a sad and tragic fact that Ofra Haza had to hide her disease from her community, a community that clearly loved and supported her. Since her death, many in Israel and the United States have felt that an opportunity to teach our children about AIDS has been lost. Lost too, perhaps, has been an opportunity for the Jewish community to come together and deal forthrightly with the taboo of AIDS.

Much has changed since the early 1990s, when many of us believed that the HIV virus that causes AIDS could be passed through a simple kiss. Over the last 10 years, most American Jews, like most other Americans, stopped thinking of AIDS as a “gay disease” or as punishment for sinful behavior, but as a virus that can be contracted through at-risk sex, intravenous drug use and (now, rarely) blood transfusions. We learned that the disease, although stabilized in the number of new AIDS cases in the United States, has accelerated among women and drug users, disproportionately affecting people of color.

The good news is that, although there is no cure for AIDS, new drug therapies, introduced in the mid-1990s, have dramatically changed the face of AIDS. For about half of those who have developed the disease, combinations of protease inhibitors have strengthened the body’s immune system and put a halt to opportunistic infections. Gone are the hospital AIDS wings, the support groups for the sick, the housebound patient, the need to hide: Many in the AIDS community have gone back to work, some to volunteer for AIDS organizations that once reached out to them.

But despite our education and awareness, AIDS remains a stigmatized disease, still associated with homosexual activity, difficult to discuss in public and sometimes difficult to discuss at all.

Enter Rami Aizic, specialist for the HIV/AIDS Program of Jewish Family Service (JFS) of The Jewish Federation of Greater Los Angeles. Aizic, at over six feet, with movie-star good looks, is an immediately inviting presence. A virtual one-man band — HIV/AIDS counselor, grant writer, pantry supervisor, spiritual counselor and idea-generator — Aizic, who has degrees in law and marriage and family therapy, has been running the program since 1998. At present he carries a caseload of 100 clients, three-quarters of them Jewish.

As a counselor who specializes in HIV/AIDS and Jewish issues, he’s the one clients seek out before telling family members of their status, or the one they ask to handle important details at the end of their lives. But the one thing Aizic can not help with today is how many Jews have HIV or AIDS. To date, no data on Jews and AIDS exist.

“That has a lot to do with the problems of the Jewish community — that being, we are a very insular group,” Aizic offers. “We don’t like to talk about uncomfortable things or things that will bring, or may bring, perceived shame or guilt. Even today, there seems to be a disproportionate amount of belief that AIDS is something to keep quiet and not to discuss. It’s Reform, Conservative, Progressive, Orthodox — across the board in Jewish life.”

Still, the Orthodox are the most stringent in not talking about AIDS, says Aizic.

“They believe [AIDS] is confined to a specific population, and they do not belong to that population. I have several Orthodox clients who don’t even want to come into this building for fear that if someone from their community sees them with me, it will be understood, through association, that they have a connection to the AIDS world and in turn to the gay community, and that will cast a negative mark.

“For Jews, there’s a real identification with community. To be singled out, for whatever reason, is not a comfortable thing — there’s the shame of being less than.”

This fear of being singled out, not fitting in, being judged by others, spills over to other chronic illnesses, as well, according to a middle-aged professional, who asked to remain anonymous. He tells his own story of a chronically ill family member who had been ostracized within the Orthodox community. When he approached his rabbi for help on how to handle the situation, he was stunned by the rabbi’s unsympathetic response: Why are you coming to me, the rabbi wondered.

“If something is different about someone, or they have a chronic disease, there’s an attempt to hide, not to mingle with that individual,” the man said bitterly. “My family was treated similar to how an AIDS patient would be treated.”

“We have to be much more open to helping people with serious illnesses,” says Rabbi Rafael Goldstein, the author of “Being a Blessing: 54 Ways You Can Help People with AIDS.” A former chaplain for Los Angeles Jewish AIDS Service and the director of San Diego’s Jewish Healing Center, Goldstein believes that though the Jewish response to AIDS was appropriate and supportive, we still have a long way to go in dealing with the spiritual isolation of those with chronic and long-term illnesses.

Referring to the AIDS epidemic, Goldstein poses the question: “Didn’t we learn anything?”

Rabbi Levi Meier, chaplain of Cedars-Sinai Medical Center, believes we did.

“We as Jews never place a value or judgment on an illness; the Talmud says when a person is in pain, we must show compassion and provide a remedy. We never put the person in isolation, which makes the person feel worse,” says Meier. “Negativity towards AIDS has not been my experience at all.”

But Alex (not his real name), a Jewish man who has had the disease for 12 years, believes we didn’t learn enough.

“The Jewish communal response to AIDS just wasn’t there,” Alex reports. “It was a struggle [in the early days of AIDS], and it’s a struggle still.”

He believes that if it weren’t for Congregation Beth Chayim Chadashim — a synagogue founded in 1972 to serve gays and lesbians, which ushered in the idea of a Jewish response to AIDS — there might not have been any response at all. “Any controversy, anything that might offend anyone, any disease associated with sex makes people afraid: ‘Let’s just keep quiet, it’s too embarrassing, too shameful. We don’t want to talk about it,'” Alex says.