Jewish responses to AIDS are largely grassroots efforts

The full unveiling last weekend of the AIDS memorial quilt — a display that stretched from the Capitol to the Washington Monument — signaled a national awakening to the human dimensions of the epidemic, according to AIDS activists.

More than 750,000 people — including President Bill Clinton and Vice President Al Gore and their wives — viewed the quilt, mostly in stunned silence. Among the symbols sewn into the 3-by-6-foot panels were a number of Jewish ones: a kippah, Stars of David, Hebrew text, bar mitzvah photos, a cantor's robe.

Visitors could purchase a book containing more than 70,000 names of victims represented on the quilt; Jewish names, seemingly in disproportionate numbers, leap out of the page.

In fact, the first of more than 37,000 panels now comprising the quilt honored a Jew who died of the disease: Marvin Feldman, who lived for a time in San Francisco, was a friend of Cleve Jones, founder of the Names Project in San Francisco, which created the ever-expanding memorial to the epidemic's victims.

But for many of the Jews who came to view panels commemorating loved ones, the Jewish community's response to the epidemic has been a mixed one — the underlying theme of a Jewish AIDS activism conference that came to Washington along with the quilt.

"There is a lot of support for people with AIDS who look for it," said Jim Popkin of Detroit, who came to see the panel honoring his daughter, Shelley Zagacki, who died of the disease in 1995, leaving behind two small children.

"But there are still so many people in our community who won't admit it because they're scared of being shunned. Talk about being alone."

A handful of small AIDS organizations in major cities and countless individual Jews have brought a distinctly Jewish dimension to the care of people with AIDS and their families, according to the planners of last week's conference in Washington.

But the response by mainstream communal and religious organizations has been sluggish and even nonexistent. Religious groups, have steered clear of any too-visible AIDS programming, fearing charges that they support a non-Jewish lifestyle.

That may be changing slowly, according to Norman L. Sanfield, co-chair of the Jewish AIDS network of Chicago and a coordinator of last week's Jewish AIDS activism conference in Washington.

"More and more, people in our community are willing to discuss it and confront it, and actively support people with AIDS — but mainly as individuals," he said.

While he sees only a few organized Jewish responses to AIDS in larger cities, the growing number of Jewish families who have been touched by the disease has produced a critical mass of volunteers and professionals pushing for a more active response.

"There are more people who are doing the work, one by one, of getting people to understand, of caring for people with AIDS from a Jewish perspective."

Rabbi Marc Blumenthal, a member of the Union of American Hebrew Congregations and Central Conference of American Rabbis Joint Task Force on AIDS, agrees.

"I get good support from within the Jewish community, from inside the Reform movement, although even there, I see a tremendous amount of awareness that still needs to be taught," said Blumenthal, one of two rabbis in the nation (along with San Francisco native Cyndie Culpeper) known to have the deadly virus.

"Outside the Reform movement, I see some very fine individual responses, but very little institutional response. That's something I'd like to see change."

Blumenthal brings his high-impact message on AIDS to Jewish high school students around the country. But his audiences are generally limited to kids in Reform congregations; he has never been invited to speak to an Orthodox group.

At last week's conference, sponsored by the National Jewish AIDS Network, the focus was on sharing programs and techniques for breaching that wall of rejection and denial. Many of the techniques discussed have long been in place in San Francisco, considered by many to be a model for AIDS activism and support services.

*In a program much like the S.F.-based Jewish Family and Children's Services' "Putting a Face to AIDS," an "AIDS Talk" outreach program developed by a local Jewish social service agency on Long Island, N.Y., emphasizes basic AIDS training for kids and peer education projects.

According to a description of the basic program, "Jewish values are incorporated into every presentation. Condom demonstrations available on request."

*Baltimore's Jewish Family Services provides an ambitious program of support services to AIDS patients and their families, support groups and assistance with daily living. JFCS here does the same.

*In New York City, an activist who insists on anonymity brings AIDS education to the Orthodox community, despite powerful resistance from religious authorities.

She visits gay bars and other gathering places, seeks out visibly Orthodox men and women and offers her educational services–what another participant in last week's conference called "guerrilla AIDS activism."

*In Atlanta, a care team under the auspices of Jewish Family Services is serving as a kind of second family for its fourth AIDS patient, and has developed a speakers bureau that brings AIDS education to day schools, youth groups, Hebrew schools and senior citizens facilities.

"We're trying to make sure our programming is infused with Jewish values, and that there is a Jewish message involved," said Leslie Levy, AIDS outreach coordinator for the Atlanta group.

Mary Ann Siegel, administrative assistant of the Michigan Jewish AIDS Coalition (MJAC), says AIDS affects many kinds of Jews. A few years ago, she worked in Detroit's inner city with a controversial needle-exchange program. "If you think there were no white, upper-class Jewish businessmen who pulled up in their Lincoln Continentals and exchanged needles, you're wrong," she said.

Jewish AIDS groups, she said, walk a fine line between dealing with the behaviors that are responsible for most AIDS cases — unprotected sex and intravenous drug use — and offending religious sensibilities.

Today, she said, the group stresses abstinence in its educational efforts. Representatives of the MJAC program, one of the most ambitious in the nation, have been invited to a local Reform synagogue to conduct a seven-week class certifying high-school students as HIV peer educators; they are working to enlist the support of rabbis from all the streams of Judaism.

Support from federations and other mainstream philanthropies is equally difficult. That's partially because Jewish AIDS organizations generally provide services to all people with AIDS and their families, not just Jews, and because AIDS prevention programs inevitably deal with ways to engage in controversial sexual practices while minimizing the risks of infection.

The problem of AIDS education is particularly acute in the Orthodox community, where homosexuality is shunned, and talk of any form of AIDS prevention short of total abstinence is taboo.

Tova Ehrlich is a volunteer with the Tzvi Aryeh AIDS Foundation in New York, a group that is trying to bring the issue before the Chassidic and other Orthodox communities.

"What we are trying for is compassionate understanding," she said. "We have referrals for rabbis who know about the issue, who are understanding; we visit people in the hospital and have a help line where people can call. We have a program in two hospitals in New York; we're there every Sunday."

Ehrlich's group, staffed entirely by volunteers and funded through nickel-and-dime contributions, steers clear of Jewish religious establishments that do not support the group's activities because of their condemnation of homosexuality — and a determination to deny the existence of AIDS in their own community.

"We just do what we need to do," she said. "We make the point that this is a disease, and there's no judgment about disease. You don't tell people who have lung cancer that they shouldn't have smoked; it's just an illness, and that's the way we deal with it."

But the non-response from Orthodox authorities is hard to ignore, she said.

"It's like a big wall, and sometimes there are cracks in it. But the wall is still there."