CLIQUES : Getting the Message

When Greg, 21 and deaf, told his friends about his AIDS diagnosis, word spread quickly through the deaf community’s grapevine. Within days, the news had been distorted: Greg was dead. The real surprise, however, was that this was the first time some in the community had heard of AIDS.

Most Americans have learned about AIDS through news media. But many deaf people, particularly those not fluent in American Sign Language, have reading skills below the sixth-grade level, which means that they have trouble understanding even close-captioned TV news items. “Many of them barely know even a little about AIDS,” says Heidi Kleiger, program manager of the Greater Los Angeles Council on Deafness. “Some might recognize the word, but not much else.”

In the insular, tightly knit deaf community, information is often transmitted electronically, on TDDs, devices that send typed messages over phone lines. It is a key part of the community’s powerful grapevine, where, like any gossip chain, distortions are rife. “Many deaf people think AIDS is transmitted by mosquitoes and monkeys,” says Stephan Kennedy, director of AIDS Education Services for the Deaf, an Eagle Rock-based program started in 1987. “One man wrote, ‘I got HIV through sex, now I stop sex and HIV finish,’ ” he says. Statistics are hazy, but between 7,000 and 26,000 deaf people have HIV or AIDS in the United States, the L.A. Council on Deafness says.

Kennedy’s group runs programs for deaf women and youths and holds about 15 workshops each month. The six-person group, funded by the federal Ryan White Act, works under the auspices of the Council on Deafness and serves about 60 clients a month.

Major Los Angeles-based AIDS organizations are just beginning to provide significant services for deaf clients under mandates of the Americans with Disabilities Act, which guarantees equal access to federally funded programs.

“Many complain that it costs too much money for interpreters or special services for the deaf,” says Kennedy, who provides sensitivity training to the staffs of about 50 AIDS agencies each year. “But now, it’s federal law.”

Kennedy comes up with dozens of versions of educational messages because the deaf have more than 20 different kinds of sign language and other communication modes. And he must break the misinformation chain.

“We play gossip games at workshops that teach the deaf how information is spread incorrectly,” Kennedy says. “And we teach them how to pass on the right knowledge.”

But his job is complicated by the distortions of the deaf grapevine. “It is so powerful,” says Kennedy, who is himself deaf. “It can never really be broken.”