Features
Another Side of AIDS
Another Side of AIDS:
Straight Discomfort in a Gay Environment
A Heterosexual Woman with HIV shares her experience
an interview by Rob Larabee
For over twenty years, the world has been grappling with a life-threatening disease called the Human Immunodeficiency Virus, HIV.
After years of gay men and lesbians fighting for our lives and our services, we find ourselves in a rather complicated scenario. Many of the newly diagnosed are coming from the heterosexual community. These newly infected people are stepping into a world of treatment that has been designed by and for the gay community because straight society didn’t care that gay men were dying.
Organizations that provide HIV/AIDS services are perceived by many people in need of service as gay-oriented. Because of our work and our deaths, we have “gay friendly” organizations that are funded by federal and state dollars. For many heterosexual people living with HIV/AIDS, this is a barrier to their obtaining services. The perception that they will be subject to an added stigma in an already stressful situation is powerful and harmful. Those of us who are gay and infected know well how the double stigma affects our lives.
In the late 1980’s and early 1990’s HIV and AIDS was becoming a siphon for millions of dollars in research. Every pharmaceutical company was rushing to develop medicine. Tens of thousands of people would soon be infected and at the mercy of antiretroviral medicine.
In 1985/86, what had been called “GRID” (Gay-Related Infectious Disease) took on a new name. Researchers had learned that the disease was a blood-borne pathogen. Anyone who might have somehow had blood or other virus-bearing fluids enter into them may become infected. The virus was now renamed the HUMAN Immunodeficiency Virus. What a concept! Could it be that homosexuals might be like everybody else? Could it be that all of society could be at risk? The face of AIDS was changing. The face of AIDS could be yours!
Still the gay community took the leading role in supplying service and support to the sufferers of the disease that destroyed a generation. Many gay and lesbian people found themselves employed in the rapidly growing field of HIV.
Because HIV is transmitted through blood to blood contact, people in the intravenous drug using community or anyone sharing syringes for any purpose have become a growing at-risk population, and many of them are heterosexual.
I interviewed one of the more outspoken people who feels she is forced to participate in a “gay environment” in seeking HIV/AIDS services. For reasons of confidentiality, I cannot use her name. She is a Vermont resident living with HIV. Her husband died from AIDS-related causes. I will refer to her as JD for Jane Doe.
OITM: First of all, we would like to know how you are doing, how do you feel health-wise?
JD: I don’t feel that well these days. I’m tired a lot. I quit taking the anti-virals several months ago for various reasons, and within the couple months I’ve been off them my T-cells have dropped drastically. Next week I’m getting another blood test and then I’ll probably need to go back on the medications or start having to deal with health problems from not having much of an immune system. But when I’ve taken the medications before I didn’t like how I felt a lot of the time and I’m worried about what some of the long-term side-affects might be. I’ve had this virus going on 15 years, and each year it gets harder to manage and still feel good in this body of mine.
OITM: Overall, do you feel your services meet your needs as an individual?
JD: Living with the virus, my son and myself have many needs. Since my partner of 8 years, my son’s father, died of AIDS, I don’t have his support, financial or otherwise. I’ve had to rely on my Aids Service Organizations to help me with many needs, starting with the coping with the shock that my partner of 8 years, my son, and myself, were HIV-positive. Next I had to rely on their help caring for my partner as he was dying. They helped us to get additional funds that we qualified for since my partner had to quit working.
I continued working part-time but there were many a months that I could not make ends meet. They helped me fill out paper work to get my utility bills paid or other emergency funds. Now they have a program called DOVE whereby local churches donate non-perishable food and household items to us every month. This has been so helpful and helps to make sure my son and I eat well throughout the month.
OITM: Are you comfortable talking with providers about additional needs?
JD: Yes, as my son got older he became very out of control. He had so much anger about everything. Our ASO social worker helped me with the problem by getting a councilor to come to our home every week to help me with parenting issues. The stress of living with this disease and my lack of energy made it very difficult to consistently parent.
OITM: What is the atmosphere, both physical and mental, like at your local AIDS Service Organizations?
JD: Let me explain what my experience has been like. One time I was volunteering answering phones at my ASO and they put me at desk of a man who ran, I think, the men who have sex with men prevention program. The artwork on the walls and around the desk was very disgusting to me. It caused me great mental anguish having to see this. Also, for years every time I go into my ASO included on the bulletin board are many leaflets about Gay and Lesbian Rights and events that have nothing to do with HIV issues.
One thing that I feel has helped make my experience going there better and more comfortable for my son and myself has been having a heterosexual social worker to meet with that we can relate to better than the outspoken lesbian ones that worked with us in the beginning. One had the gall to tell me and other HIV heterosexuals in a support group that she facilitated at the local hospital – but who at the same time worked as a social worker at the ASO – that everyone is bi-sexual just to a more of lesser degree and that those of us who think differently are just in denial about it. I know I have never had any inclinations to ever be with another women physically and I vehemently disagreed with her statement and resented being told this.
OITM: Do you have adequate support?
JD: Yes, I do because of the support I receive from the Twin State Women Network. But for the most part I don’t think some heterosexual men in Vermont and New Hampshire do, because there is no such organization for them. Last year, when I personally organized a mixer for HIV-positive men and women to get together and socialize, many of the men I spoke to from around the state did not seem to be getting adequate support. Many of those men did not use their local ASO or did not feel comfortable attending the People with Aids Coalition Retreat or events because of the gay atmosphere. They seemed to be completely isolated and on their own with this disease, and it is my belief that there are many more of them out there.
Also, many HIV-positive women I spoke to were very much in need of opportunities where they could meet and socialize with other HIV heterosexual men and women. [They] expressed their discomfort at attending social events that were predominantly gay and therefore very different than what they were use to. When I offered this event, I could not receive any financial support from the People with Aids Coalition because the purpose was to offer an event for heterosexuals specifically, and this bothered some on the PWA board. I thought this reaction was outrageous. So with my limited financial means, I ended up having to cover some of the costs of sponsoring the event out of my pocket. So I have not been willing to risk being financially liable again and all the time and energy necessary to put together another similar event even though heterosexuals need this kind of support and are not getting it.
OITM: Can you comment on the feeling of being a “minority” in regards to receiving services?
JD: It’s been hard and at times very uncomfortable – starting with those first days when I first found out about our diagnosis. I was thrust into a world that was completely foreign and at times terribly uncomfortable to my partner, my son, and myself.
In my early 20’s I had lived in San Francisco for a brief while, so I had been around homosexuals before, but it bothered me and it was hard for me to understand. I basically have always believed that people should be able to live and do what they want to as long as it doesn’t hurt anyone else, so I saw it that way.
But with my diagnosis I was thrown into this homosexual world in order to get the support I needed to be able to survive with this disease both emotionally and financially. When my partner would go down to our ASO to get the help he needed, he would tell me how difficult it was for him to go there because of the homosexual atmosphere. I found it difficult also, and especially when the first social worker we got there was an outspoken lesbian.
Since I’ve learned of my diagnosis I have spoken to many HIV-positive heterosexuals from all over the country that find it very difficult for this same reason. I have heard from many HIV-positive women about going into their local ASO to get the help they needed with their young children. When they arrive the walls are plastered with posters and brochures of men being together. Our young children, many who have not been exposed to this, start to ask us questions about what they are seeing. Now like dealing with the shock of our diagnosis were not enough we’re left trying to explain homosexuality to our children or leave them confused to ponder it on their own.
My son, who is now 15 years old, expresses to me that he doesn’t like that when we need to get our needs met our local ASO he has to see, he says, “such perverted and gross things.” Now I realize he’s only 15 and many 15-year-old males in our country are very intolerant of homosexuality, and that’s not a good thing. But why couldn’t the posters be taken down and the brochures out of the way till someone asks the social worker for what they need, so not everyone going through the door has to look at such gay literature that may not be appropriate for everyone, including young children.
When I’ve mentioned these kinds of concerns, nothing’s happened that I’ve seen to reduce our discomfort. Now that more heterosexuals are finding out they are HIV-positive and need to use services at their local ASO, our comfort level should be given some consideration or we should be able to get our services at an ASO that creates an atmosphere where all heterosexuals can feel comfortable, including my 15-year-old son.
Recently, I read an article in AWARE, a newsletter put out by Twin State Women’s Network, about an HIV-positive women from London, England, who got her services at an ASO called Body and Soul. She says how pleasant, supportive and helpful it was for her and other heterosexuals to go there. They weren’t at their moment of need having to address the issue of homosexuality and be exposed to things they’d rather not at this time with so much else on their plate.
Also, I have been upset when I receive the newsletter from my local ASO so much of it being a platform for Gay and Lesbian rights and issues in which I have no interest. I wish the pages were full of topics that were more of interest to all people who are HIV-positive. I have requested that these items not be included in the newsletter but they continue to be included.
The other place it’s come up for me is attending the People with AIDS Coalition Retreats. These have been wonderful experiences for me for the most part, but also very difficult. The first year I went I was overwhelmed by the gay culture. Men were flirting with each other and telling crude jokes that I didn’t get. This was terribly uncomfortable for me, and the first year I attended I almost left. I’ve continued to attend but some heterosexuals I know have not returned because they found it to be too upsetting. The informative workshops seem to go well but the social activities just don’t work for me like the dances and when the entertainment was a cross dresser. The best year for me was the year we had a heterosexual only support group.
OITM: Do you have any additional comments you would like make?
JD: Maybe it’s not fair to ask the HIV gay community to change their behaviors because us heterosexuals are uncomfortable with them, but it is not right that while trying to cope with having this disease that some heterosexuals do not have a place to go where they can feel comfortable.
One of the reasons that Twin State Women’s Network was started was that women were having a difficult time relating in support groups that were composed of predominantly gay men. Twin State Women’s network has offered women with HIV our own retreat and has a peer counseling program. But it at this time does not offer these services to heterosexual men and does not offer case management. We must get most of our other needs met at our local ASO.
My hope for the future is that either the atmosphere at the ASOs in my state and across the country can either tone down the gay image they present in their offices and to the public. Or if they don’t want to do this, more funding should go to other aids service organizations that specialize in providing services to heterosexuals. HIV-positive heterosexuals like my son should not have to get over their homophobia to be able to get the services they need in an environment where they too can feel somewhat comfortable.
My son said, “This is not a gay disease and the media should give straight people with HIV some attention.” I know it’s harder for newscasters to find HIV-positive heterosexuals willing to be interviewed and there are many reasons for this I will not go into here. But when the media does do coverage about the AIDS/ HIV epidemic, the public should be made aware of and informed that there are many heterosexuals living and dealing with this disease, and that you do not need to be gay or a drug user to end up with this virus. Many heterosexual males, my son included, say one of their biggest fears about disclosing is that people ignorantly assume that they are gay just because they are HIV-positive.
OITM: Thank you, and we hope the very best for you and your son.
Rob Larabee is a Consumer Organizer with the Vermont People with AIDS Coalition. He lives in McIndoe Falls.