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Person With AIDS (PWA) Advocates for the Deaf

February 1996

Dressed in a black henley and faded jeans, Stephan Kennedy presents himself in a very unassuming and comfortable manner.

The salt-and-pepper of his neatly trimmed beard exudes experience, yet his expressive face and cheery smile make him appear youthful and down-to-earth. Although Kennedy has been deaf for his entire life, he is approachable, articulate and downright chatty.

A Mission to Educate

Kennedy's compelling personality suits his life's mission to educate both the deaf and hearing community. Currently, he is acting director for Deaf Cares Project, Inc., a Los Angeles organization focused on teaching empowerment techniques to the deaf community. Before that, Kennedy was program director for AIDS Education/Services for the Deaf. During an interview with Kennedy, conducted with the help of his longtime interpreter, Julie Friedman, Kennedy focused his comments on the unique challenges faced within the HIV community by the deaf and hearing impaired and by those health-care providers and volunteers who wish to serve them.

Deaf culture is far different from the cultures of the hearing world, Kennedy pointed out. "There are a lot of things to learn about deaf culture," said Kennedy. "For instance, it is a misconception that every deaf person communicates in the same way. Everyone is their own person, and there are many different ways to communicate."

Whether through signing, writing or using an interpreter, it is important to try various methods of communication. "Communication is the first thing," said Kennedy, who encourages people to learn a few basic signs. "The best way to learn is to get a taste of it. Go and be with people."

He explained it is necessary to get comfortable talking face-to-face. Whether one-on-one or through an interpreter, he advises people to make direct eye contact, to face each other and to use facial expressions. "Don't speak slowly and don't scream, unless asked," he noted. "Behave as you would in any normal conversation."

Lip-readers Are Rare

It also is important to whittle away at any misconceptions. A common myth is that most deaf people can read lips.

"Very few can lip-read," Kennedy said. "My language is American Sign Language. English is a second language for me."

When it is necessary to communicate through an interpreter, Kennedy advises people to establish a two-party conversation. Although it is tempting, Kennedy said it is important to avoid "ask him" or "tell him" conversations. Instead, the hearing person should relate directly to the deaf person and allow the interpreter to translate in-between the dialogue. Unlike English, American Sign Language is a very visual and emotional language, and because of that it does not translate well into a written language. This language hurdle is a prime concern for HIV educators who have a difficult time reaching out to the deaf and hearing impaired.

"People tend to believe we [deaf people] have full knowledge of HIV and AIDS because there is so much information out there, but people don't realize how most deaf people get their information," said Kennedy. He believes only 25 percent or less of the health message ever reaches the deaf community.

Unique Communications

Although he is considered "bi-bi," a term meaning bilingual and bicultural, Kennedy points out that many deaf people are not comfortable with written English. Instead, many rely on the "grapevine" for their information. He said deaf people tend to meet together to share stories and to discuss issues. Such encounters, however, are not an ideal way to obtain facts and breaking news about HIV and AIDS.

While some publications are intended to reach the deaf community, Kennedy said very few of them deal with HIV and AIDS. Television is a good vehicle, but all too often closed-captioning is not available. Such limitations mean that many deaf people must look to organizations like AIDS Project Los Angeles (APLA) for services and support. Kennedy identifies APLA as one of the first AIDS agencies that opened up to provide services to the deaf community. "I'm living with AIDS," said Kennedy, "and I need some type of support myself."

Kennedy has also received HIV and AIDS-related services through the Greater Los Angeles Council on Deafness. However, that organization's mission is broader than health care alone, making it extremely important for the deaf community to have other support and health care services available.

Recognizing how important it is to have choices, Kennedy set out nearly ten years ago to train and educate hearing providers, deaf people and interpreters. His work has taken him back and forth across the country, where he has enabled many health care and welfare providers to work more effectively within the deaf community.

He feels people today are more sensitive to the needs of the deaf and hearing impaired, partly through the success and celebrity of individuals such as actress Marlee Matlin and Heather Whitestone, the first deaf woman to be crowned Miss America. "People are more exposed to deaf people, and, in turn, they see more and more of the services," said Kennedy.

Kennedy is encouraged by the improvements in services he has witnessed over the years, but he also notes that there is a long way to go. At times, for example, he is frustrated because he doesn't always have ready access to an interpreter.

Over time, services can and do improve when people commit themselves to addressing the special needs of those they serve, he concluded. "It will not happen overnight," said Kennedy, "but I am hoping for equality."

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This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
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