HIV/AIDS education efforts have missed deaf commmunity

Through specialized education programs, psychologists try to reverse the deaf community?s lack of knowledge about the AIDS epidemic.

By Scott Sleek
Monitor staff

Tell a deaf person in sign language that she?s HIV positive, and youmay see her smile. Many deaf people interpret the signed word 'positive' as something good and don?t recognize it as a diagnostic term.

'So when you sign to a person that they?re HIV-positive, and don?t explain that it?s a bad thing, they?ll walk away saying, ?I?m HIV positive. That?s great,?' says Alan Marcus, PhD, director of community services at Gallaudet University?s mental health center.

That frequent reaction reflects the difficulty health professionals and educators have had keeping the deaf community informed about HIV, psychologists said during a symposium at APA?s 1998 Annual Convention in San Francisco. Psychologists and other mental health professionals are now developing HIV/AIDS education programs specifically targeted to people who are deaf or hearing impaired.

Missing the message

A primary reason for the ignorance about HIV stems from the fact that information hasn?t been made accessible, or disseminated in the proper format, to deaf people, Marcus said. Even written material is often incomprehensible to deaf people: Research shows that the average deaf person reads at a fourth- or fifth-grade level, often because sign language is so stucturally and grammatically different from written English. And unlike the hearing population, deaf people have far less ability to passively garner information, like listening to the news on the car radio, and thus may miss a lot of HIV-prevention messages that millions of other Americans hear every day, he said.

Marcus pointed to various reports about deaf people?s dire lack of knowledge about HIV/AIDS. Time magazine in 1994 published a story in which AIDS-prevention activists said that 13 years into the epidemic, many deaf adults and teen-agers may have just learned that the disease even existed, he noted. And a survey taken at Gallaudet in 1995 indicated that 41 percent of the 100 respondents thought they could contract AIDS just by donating blood, he added.

Marcus cited several studies and media reports that reflect the prevalence of HIV/AIDS within the deaf community. He said he recently attended a workshop in Maryland where participants were told that 1,700 deaf Americans have died from AIDS and up to 300 new cases are diagnosed each year. And experts who attended a 1993 conference on AIDS in the deaf community estimated that 25,000 American deaf people were HIV positive.

Speakers also cited other problems they encounter in helping young deaf people avoid contracting the virus. Many deaf students rely on their families to take care of all their health needs, and don?t know how to be responsible for their own care once they leave home, said Robert Q. Pollard, PhD, of Strong Memorial Hospital in Rochester, N.Y.

Designing a program

In response to the lack of knowledge and misconceptions, staff at Gallaudet?s mental health center, with funding from the Ittleson Foundation, last year began developing an HIV-prevention curriculum for the deaf community. The program is based on APA?s HIV Office for Psychology Education (HOPE), which trains mental health professionals to work with people who have HIV/AIDS. The new version will include captioned videos and activities for mental health professionals to conduct with deaf clients. The curriculum is still under construction, and designers want to make it as visual as possible through such tools as models that show how the virus attaches to cells, Marcus said. The Family Services Foundation of Maryland and Planned Parenthood Foundation of Delaware are collaborating on the project.

Daniel Langholtz, a licensed clinical social worker at the Center on Deafness in San Francisco, said he also spends a great deal of time providing his deaf clients with basic facts about the AIDS virus. The center staff makes sure the HIV literature they provide clients is thorough and understandable. And they also make sure the interventions are appropriate for deaf people, he said, noting that some clients in the past have received inadequate information and services through public programs.

'Even with an interpreter, the information is often inadequate,' he said. 'Deaf people are unable to sort out all the information and the meaning of it [if it?s presented to them too quickly or thoughtlessly]. We find in our work that it?s of great benefit to deaf people to have time for more discussion, too.'