Am I Hearing You Right?
Accessing HIV treatment and education services when you are deaf or hard of hearing.
Back in 1976, I had the opportunity to take a three-week course at Maryville College in Tennessee that was designed to give hearing people an introduction to American Sign Language (ASL). Unfortunately, I have lost most of what little I learned. But since that time I have had an interest in ASL and in being open to communicating (even if by written notes) with the deaf. In this first installment, I want to give an overview of what the deaf and hard of hearing face when trying to access services for treatment and education for HIV.
In the April 1998 issue of POZ magazine, there was an article called "Silence = Deaf" by Steve Friess. A great play on words as well as an informative piece for those of us in the hearing world. Reading this stirred up memories of those three weeks some twenty-two (oh my god!) years ago.
Remembering those fond times made me begin to do a little research about how the deaf and hard of hearing obtain information regarding HIV. This search for information led me to Rob Calhoun. Rob who self-identifies as a member of the deaf and hard of hearing community, is a case manager at AID Atlanta specializing in provision of services for the agency's deaf and hard of hearing clients. Over lunch, he and I discussed the need for accurate information and easy access to this information within the deaf community. I came away realizing how little I knew and resolved to find out as much as I could. I wondered to myself what it would be like to be not only living with HIV, but also have the barrier of language that kept me from the information that I needed to take care of myself.
As I got into this article, I became more aware of my lack of knowledge and sensitivity in not knowing such things as the deaf and hard of hearing do not like to be refereed to as "hearing impaired." This implies there is something wrong with them. After pondering this for a moment I made the connection. It would be like someone saying to me that I was "sexually impaired" because I was a gay man. Again, I was brought back around to language.
"More than seventy percent of deaf people consider ASL their first language, and English their second," says Scot Pott, president of the National Coalition of the Deaf Community and HIV. American Sign Language is just that, a language. It is not charades or acting out of English word -- this is a common misconception of the hearing. People who hear or "hearies" tend to view ASL this way when in fact it is its own language like French or German. For example, the ASL gesture for "chair" doesn't mean the English word chair, but rather the concept of a chair; gestures are directly connected to specific units of meaning.
In his article, Friess quotes from Daniel Langhottz, a deaf, HIV-positive social worker at the University of California, San Francisco: "Most deaf people stay among themselves, and among themselves they only need ASL." As part of the research for this article, I had several conversations with Rob Calhoun from AID Atlanta. Rob self-identifies as "hard of hearing" and works directly with their deaf and hard of hearing clients. Our conversations confirmed the isolation of the deaf and hard of hearing. I discovered that, for many deaf people, to lose trust in a hearing person was not hard to do. After all we "hearies" do control the world and subsequently the dissemination of information. We also often tend to treat the deaf and hard of hearing in a paternalistic manner or simply dismiss them as unintelligent. Perhaps their distrust is founded in reality.
Friess continues, "Even though most deaf people are aware of AIDS, many view it essentially as a hearies' disease, the way that straight people once thought of it as a gay disease." It is apparent from this article as well that deaf folks know only about one quarter of the prevention information that hearing folks know, and their understanding of AIDS treatment is about 10 years behind that of the rest of the world. Obviously there is a communication problem.
In the next installment I will interview a person from the deaf community who is living with HIV.
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.