213 Primary Source: Statements of AIDS Patients (1983)
213 Primary Source: Statements of AIDS Patients (1983)
HIV/AIDS confronted Americans in the 1980s. The disease was first associated with gay men (it was initially called Gay-Related Immune Disease, or GRID) and AIDS sufferers fought for recognition of the disease’s magnitude, petitioned for research funds, and battled against popular stigma associated with the disease.
Mrs. BOXER. I wanted to ask the panel, if anyone can address this, if you feel that you are given enough information about the disease, and then the second part, do you think that the gay communities throughout the country, from your knowledge, are being given enough information so that they can perhaps make some changes in their life to try and avoid it …
Mr. LYON. There is no new information. Every bit of information that has come out has been very widely disseminated. People are hungry for information. The city government, the public health officials, the city of San Francisco have, as far as I am concerned, gone overboard and made information available. Public forums have been held. Many of the health care facilities have asked patients and health care officials to come and explain, “tell us everything you know, give us the information in order that we can dispel many of the fears.”
The main problem is there is no new information. It is a rehash over and over and over again of the same information.
Mr. FERRARA. I agree with Mr. Lyon. I believe the problem is more misinformation than lack of information.
I do my best to do as much as I can to dispel misconceptions about the disease. People don’t have to be afraid to be in the same room with us, people don’t have to be afraid to swim in the same swimming pool. I believe that gay organizations across the country should be given more information concerning guidelines that can be disseminated to the gay community in terms of—in terms of ways that gay men can protect themselves from the disease, rather than causing the paranoia and hysteria that the information that has been disseminated so far caused.
Mrs. BOXER. Do I have time for one last question? Do you find that you have a support system out in your communities to help you get through this experience? . . .
Mr. CALLEN. It has made the difference for me. It is really what relieved some of the fear on a day-to-day basis. I saw other people fighting for their lives. We share information, we talk about doctors, hospitals, and treatments. For me AIDS was another closet, was another coming out.
When I was first diagnosed there wasn’t the terrible stigma that is attached to being diagnosed with AIDS now. So it never occurred to me not to identify myself to my friends as having the disease. But since that time, because of a lot of the misinformation and often hysterical coverage in the media, I know a number of people who refuse to identify themselves to their community, even to their family, as having the syndrome, because there is such tremendous stigma and isolation attached to it.