When I think back, I have always felt alone and different. I was living in a world filled with other people who were all the same as each other. Then I came out. Coming out as a lesbian is a relief and I even developed a sense of comfort inside, because that's who I am. Coming out as an HIV infected dyke is painstaking, principled, exacting, daring, and raw. But ever since I did, I have an even greater sense of relief because, I don't have to hide who I am any more.
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Since the first day I came out as an HIV infected lesbian, I have gotten an enormous amount of support from the lesbian and gay infected and affected community. I've actually never felt more support and empowerment in my life. I became comfortable with who I am.
When I looked for support from the women's community however, my experience was quite the opposite. When I attended support groups for women (in 1990), I always heard a lot of blame directed toward the gay/lesbian community. The straight women in the room were blaming the gay and lesbian community for the virus in their own bodies. As if gays and lesbians had invented this virus and we were responsible for each of them becoming infected with HIV. Blaming bisexual and closeted gay men is a phenomenon that has been going on for years in women's support groups. Everybody knows it goes on, but nobody dares to talk about it. Nobody addresses this very destructive attitude and self-defeating conduct. We didn't invent the virus and we didn't invent the closet. I can't understand not taking responsibility for my own actions and I became frustrated that these women would not take responsibility for theirs. (Only in the case of violence/rape does blame of others even begin to enter the
The women in the groups began to reveal and rationalize their own homophobia, addictaphobia, and some were even AIDSphobic. I took the addictaphobia rather personally, since I was an Injection Drug User for many years. To this day, I still don't quite understand how a person with HIV/AIDS can be AIDSphobic, I guess it stems from self-hatred. I didn't understand because I don't have self hatred.
Somewhere to Turn
I wanted to DO something, not just talk about how bad things were. This is when I stopped going to traditional women's groups for support and turned to a group of people who wanted to fight for the lives of people with HIV/AIDS. They were fighting for the lives of their lovers, friends, brothers, sisters, sons and daughters. And they were fighting for their own lives. They didn't blame other communities. They didn't blame each other. They didn't think they deserved this awful disease.
They put the blame where it belonged, on a government that willfully neglected a plague which has become as astronomical and widespread a crisis as we were afraid that it would. These people didn't have the shame attached to AIDS because of the way it is transmitted. Instead, they shamed the government for neglect. They were determined, boisterous, bold and defiant. They were vigorously fighting back. They had no shame!
Shame, Shame, Shame
The shame that is alive and well in the women's community is horrifying! Does the shame come from the fact that HIV is transmitted sexually, or do these women believe they are supposed to feel ashamed because society and media, and government tells them they must feel shame? It's shame that has driven women underground for years. At what point are we going to stop this way of thinking? It's really sad that in 1995 women with HIV and AIDS are still being made to feel ashamed, and they are still allowing themselves to fall into that trap. We are the only ones who can reverse that, folks, both as individuals, and collectively.
Not long ago, I read an article in APLA's newsletter, written by a woman with AIDS. She stated that she could not relate to other women with HIV and AIDS because of the class difference between her, whom she considers upper class and the prostitutes and drug users, which she of course, views as the lowest class.
This is what infuriates me. When women with HIV make these kinds of class distinctions, it only serves to tear us apart as a community of infected people. What I find particularly upsetting, is that this is a prime example of the oppressed being the oppressor. None of us is better than the other. We are all infected. And we all did something to get that way, (whether we had fun doing it, or not).
In most every case our disease will progress to AIDS, and then we will die. Does this mean we should feel shame? NO! Does this mean we should say some people are innocent & undeserving and others got what they deserved? NO! Does it mean that we should all put our heads together to come up with a plan to fight like hell for our lives? I think so. Does it mean that as infected women we should reach out and connect with one another for encouragement and support? Yes. Does it mean that as HIV infected lesbians we should band together, unite, and try to make things better for ourselves and other lesbians that will follow us? Definitely!
Blame the Government
For me, I choose to accept it, not look back, figure out where to go from here, and move on. At this point in my life, I have become intolerant of judgmental attitudes, no matter who they're coming from.
I'm a proud lesbian with HIV and all my life I've been told that I was not as good as other people because I was either a drug user, or a convict, or one of "those kind of girls", (a dyke). And now I'm an HIV infected dyke. I simply choose not to be around people who indulge in blaming the lesbian and gay community. It's destructive thinking and it's poison!
In my alternative group there were no judgments made based on class differences. There was no distinction made between innocent and guilty victims. "All people with AIDS are innocent."
A Sense Of Community
Although, there were many groups who courageously tried to do something about AIDS, I felt that as a community, we could do more. I finally found a group where I belonged. I was part of a community of courageous people who would go to any lengths. This group taught my lover and I about the politics of AIDS. They explained to us how a whole country could sit back and watch this monster called AIDS devour complete communities and generations of families.
We are all victims of government neglect. The government and people in positions of leadership, have the capacity to do something about AIDS. They could've stopped it in the early 80's. But they did nothing! I guess they thought that if they ignored AIDS, that all the queers & people of color would die, and only the white middle class would remain. But AIDS didn't go away. It's getting much worse. The government has never done enough, they are still not doing enough, & they won't do enough unless we demand it.
We fought courageous battles, and made tremendous strides which benefited all PWA's, not just segments of the infected population. But, the significant governing downfall for the group is that we were then, and are now, dying from a virus that is out of control.
Those of us who haven't died, became overwhelmed and consumed with the death around us. As our family started to get smaller and smaller, the battle cries in the direction of the county/state and the feds diminished and became obscure. We were running out of time and energy.
We couldn't change society fast enough. Nancy and I, and others became very tired. Many of us got 9-5 jobs in HIV centers, doing activism in our spare time. Most of our heroes, the strongest warriors, are dead or burnt out. I felt alone again. We needed to focus on advocating for a cure.
Yet, Another Battle
A few months ago, I woke up at my usual 6 a.m. and I felt just a little more overwhelmed and more emotional than usual. Then, it dawned on me. We are in the midst of one of the biggest battles of our lives. Mandatory testing is once again upon us, and it is more fierce than ever. Universal voluntary testing for all, or universal mandatory counseling, means MANDATORY COERCION for women. For pregnant women, it could easily mean forced treatment.
We deserve better than a "standard of care" that is based entirely on one single, solitary, incomplete, study with questionable findings!
The resurgence of an old issue, a battle we had already fought. Renewed bigoted policy is resulting from researchers sentimental claims that they can "save babies". The truth is that people are making decisions based on one incomplete study done on uninformed pregnant women.
This is historically typical for women's research. Does anyone out there remember those awful IUD's that killed thousands of our sisters? I do. Breast Cancer research done exclusively on men? Heart disease research done exclusively on men? Now, AIDS research done exclusively on men except for 400 pregnant women.
Of course, women who aren't pregnant or don't reproduce are not worth anything to society, so why should anyone do research for us? Women deserve better than a "standard of care" for us that is based entirely on one single, solitary, incomplete, study with questionable findings!
I'm not trying to start a gender war but, the men who seek treatment for HIV and AIDS make their decisions based on several findings from several studies!
For the last few months, I, as an HIV infected lesbian AIDS activist, and my lover, Nancy, as a Lesbian AIDS activist have felt very alone in the fight against AIDS.
So, when I woke up on that particular morning, I felt the impact of the last 6 years of my life. Where was I going and who could I turn to for support? We needed a group or an individual to turn to for encouragement and maybe even some nourishment. But most of all, somebody who could help us sort things out and prioritize our fight.
This is when Nancy and I headed to New York to visit the most courageous lesbian we have ever had the honor of knowing. We found what we needed. We refocused and regained the energy needed to carry on the fight.
And now, Jessy Fucking Helms is at it again! And People with AIDS and Queers are under attack.
I've found a new group to sink my teeth into. A group who is also fighting back. A group with no shame. If you want to join, call this number (310)822-1198. Lesbian Avengers. "We recruit in Los Angeles".