Am I Hearing You Right?
An interview with "Adam," an attractive, thirty-something, HIV-positive gay white male who has been profoundly deaf since birth.
In the first installment of this article, we saw how important communication is in accessing HIV information and services. We saw, too, that our brothers and sisters from the deaf and hard-of-hearing communities feel isolated from those of us in the hearing world -- those of us with the information, services, and ultimately, the power to live successfully with HIV. In my attempt to understand this disparity better, I arranged to sit down and interview someone who is both deaf and HIV-positive. Rob Calhoun from AID Atlanta was gracious enough to arrange for this interview to happen. Over lunch, Rob, an ASL (American Sign Language) interpreter, and "Adam" (not his real name) and I sat down to talk about "Adam's" experience as a deaf person living with HIV.
"Adam," an attractive, thirty-something, gay white male has been profoundly deaf since birth. He tested positive in 1992 when his partner and he decided to be tested after being together for a year. When asked how he reacted to the news of being HIV-positive, "Adam" said, "My first reaction was shock. I really didn't know when or where I had been infected. We were living in Tampa, Florida, at the time and my lover, who was hearing, worked on getting us on medications and gathering as much information as possible."
As we finished our lunch, we all became more comfortable and the interpreter had her hands free to facilitate the conversation. Following is our conversation:
Gerry Hoyt: When did you come to terms with your diagnosis?
"Adam": At first I had fears of being ostracized from the sports community within the Deaf Community which I was a part of. It took me a year really to come to terms with being positive.
G.H.: Do you feel you have the support of the deaf community here in Atlanta as a person living with HIV?
"Adam": No. I have observed the negative discussions among my friends who are deaf also. There is much gossip within the deaf community. To be known as someone with HIV could mean the loss of friendships. In the hearing community you can go find more friends. Our community is much smaller. Although I might feel comfortable sharing my status with a few close friends.
G.H.: So what you are saying is that the pool of possible new friends is much smaller than say in the general gay community?
"Adam": Yes. Very much so.
G.H.: What obstacles do you feel in terms of accessing services from ASOs?
"Adam": Most ASOs don't try to approach me as a deaf consumer. AID Atlanta is the only agency with TTY [teletype] access. They also supply an ASL interpreter for their deaf clients. Even when I come in for a visit to the clinic there is an interpreter for me.
G.H.: It is often said that adversity is the best teacher. What has HIV taught you?
"Adam": To take care of myself and my health. It has also taught me survival and to approach life in a positive manner.
G.H.: How can ASOs reach out to the deaf community?
"Adam": See us as possible consumers.
G.H.: What resources could ASOs provide on regular basis to better serve the deaf and hard-of-hearing community?
"Adam": Most important is TTY. It is the only way we can communicate with the assurance of confidentiality. Georgia Relay (a third-party communication service for the deaf and hard-of-hearing utilizing TTY) is fine for most things. But talking about HIV and safer sex is too personal for this service. ASOs simply must have TTY to expect us to feel comfortable utilizing their services. There is a great need for education. There is still the feeling among us that HIV can be spread through casual contact. Many within our community don't even know the difference between HIV and AIDS.
G.H.: Are there any heroes within the HIV community who are also deaf?
"Adam": No, because of the fear of being found out and cut off. We need role models and leadership. As a minority, the HIV-positive hearing gay community stood up and fought for their rights under the ADA. But they had to come out and be public to do that. Some of us [in the deaf and hard-of-hearing community] must have the courage to someday stand up for our rights, too.
G.H.: Do you think maybe you are the one?
"Adam": (laughing) I don't know -- maybe. We will have to see. I didn't come out as a gay man until I saw others within my community do it.
This interview confirmed my findings from what I had read about the lack of information available for the deaf and hard-of-hearing. Hearing "Adam" tell me that it is much easier for me to replace old friends who couldn't handle my HIV status with new ones really struck me. To be an minority within a minority must be a very difficult and very lonely place at times.
I appreciate "Adam's" courage and willingness to speak frankly with me. One of my goals for 2000 is to make our peer counseling program more available to the deaf and hard-of-hearing. I am looking into the possibility of adding a TTY line here at ASP. We also have made plans to provide ASL at the next Operation: Survive! weekend scheduled for January 22 and 23, 2000. This is something Rob Calhoun and I talked about before I took over as program manager for peer counseling. Those from the deaf and hard-of-hearing community who would like to register for this workshop should call Rob Calhoun, Case Manager for deaf and hard-of-hearing services at AID Atlanta. His direct TTY telephone number there is 404-870-7801.
After completing this interview, I have often wondered what "Adam" has thought about the question I asked him: "Are you the one?"
(Next month we will look at resources for the deaf and hard-of-hearing, both locally and nationally.)
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.