14 GAY PEOPLE'S CHRONICLE

November 28, 2003

This looks like life today

From Oprah's club to the AIDS Taskforce, a book about AIDS opens dialogue

by Karen Auble

Working at the AIDS Taskforce of Greater Cleveland, we witness and are part of the AIDS narrative every day. It affects each of us on a very personal level. Hundreds of lives lost since we started clients, friends and loved ones. It brings a sadness and frustration that we carry with us.

Reading books about AIDS is something we normally do in isolation. While this challenges us to think about our own perceptions and experiences our own AIDS narratives-books can, in a different way, link us to the narratives of others.

Encouraged by this idea, members of the AIDS Taskforce staff selected a novel to read and discuss together: What Looks Like Crazy on an Ordinary Day by Pearl Cleage, an Oprah's Book Club pick of 1998. In Cleage's novel, a modern African American woman effectively deals with real-life problems, including being HIV positive, and manages to live a fairytale life, complete with finding love and acceptance from the man of her dreams.

On September 10, the AIDS Taskforce staff got together and recorded a one-time book discussion using this novel and our own stories as reference points.

Present at this discussion were executive director Earl Pike, associate executive director Tracy Jones, director of development Judy Price, development assistant Diann Mistelske, clinical director of services Sue

Doerfer, capacity building coordinator Julie Patterson, housing case manager Dawn Webb, intern Vandana Mathur, Gurnick/ Hebron clinical coordinator Aricka Tucker, case managers Lisa Carlson and Jessica Horvat, case aide Dania Sierra and nutrition/ transportation manager Darnell Green.

The resulting dialogue is just one of the many responses to AIDS in our community. Over the next few months, the AIDS Taskforce, in collaboration with the Cleveland Public Library and Playhouse Square, will be facilitating book discussions of What Looks Like Crazy on an Ordinary Day and other books about AIDS for Many Voices, Many Lives: A Community Response to AIDS Through Reading.

What follows is not necessarily linear and coherent, but neither is AIDS. It's an experiment: using a book discussion to delve into our feelings, thoughts, attitudes, hopes, fears. The discussion bounces around, but one thing is consistent throughout: the profound affect AIDS has had on many of us, and will continue to have for some time to come.

Sue Doerfer: What Looks Like Crazy is just one story. Probably, for some people, it's a good story. Somewhere out there, there's a woman [like the protagonist, Ava] who got to sell her business and lives three years without having to work and drinks vodka. Someone with HIV and money. But it's not the common story; there are so many, many others. That's part of the issue that we

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don't have a whole set of stories about African American women with HIV; we've got a couple. And so we want this one to be everything because there really isn't anything else out there.

Earl Pike: One of the first plays written about AIDS was The Normal Heart by Larry Kramer. There were a couple of novels that came out around the same time. And it was like there was only one narrative: gay man, loving relationship, Reagan-throw in a couple of other things. Now, it's different: there's this multiplicity of narratives. And I think if anything can come out of this, this talking about AIDS books and narratives, it would be that more of those stories need to be told. Just the bits and pieces of stories that are part of the ambience of this place [the AIDS Taskforce] are stunning.

One thing I wanted to mention about the book: [Ava's boyfriend] Eddie [who is HIV negative] seemed to be way too cool about the whole protection issue when it came up: "I know I have to use a condom." It was a dialogue about condoms that I don't think that real people actually have.

Tracy Jones: A friend of mine told me that he was in a relationship with a partner who was HIV-positive and he was saying, "We don't have penetrative sex at all, and I'm still terrified." And I thought to myself, "Wow, so where do you put that in the context of loving this person?" He said you just get up every day and do everything that you do, but it's just a constant nag. I think that's would it would be for me too.

Doerfer: For me, having sex with someone who doesn't know their status has become increasingly more difficult for me as I spend more and more time in this HIV world that I'm in. I mean, it's to the point where I have to decide, "Okay, I'm actually trusting this person with my life."

Julie Patterson: When it comes to sex and safer sex, I actually think that there are levels of denial that would increase the more you get to know the person. You don't want to look at it-HIV, and risk-because it's going to be painful.

Pike: Part of what's difficult for me working with AIDS is that we're holding the world up to a really high standard that we're all struggling with ourselves. I remember about ten years ago asking my peers working in AIDS, "Have you had unsafe sex since you learned about AIDS?" Every single person I asked had had unsafe sex. It's an incredible standard to maintain as individuals, and as communities.

Dawn Webb: A lot of people still have this concept of HIV that says everyone with AIDS is either an IV drug user or a gay man. They don't want to look at the heterosexual people that are positive. I tell colleagues, outside the agency, that I have a lot of women who are on my caseloads, they say, “Well, are they lesbians?" No. You tell them, "They have kids." And then you start to get a spark of curiosity as they ask all these questions, and before you know it, you're educating them about HIV. Then they'll say, "Oh, do you do testing down there?"

Pike: I stop at this gas station near the Taskforce all the time, and the same cashier

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is there all the time. Finally, the other day, he asked, "So where do you work anyway?" I said the AIDS Taskforce. He got visibly nervous and said, "Oh, you better be careful, you better be careful." Has that happened to anyone else here that you've gotten a negative or an unusual reaction, an uncomfortable reaction, from another person when you disclose that you work here?

Jones: Well, many of you know that I gave up my church because of its view on homosexuality. I thought my way back to salvation would be to do education in churches, and I started working in AIDS doing education for women. I can't tell you how many churches I literally got tossed out of-double digits. It was awful because you go and you say, "I'm here to talk about HIV, and the numbers are rising for African American women." And the response has been, "So are you gay? Are you HIV positive?"

I just gave up for a really long time, and was really cynical about doing outreach to churches because they were brutal. I think that there are some churches that are accepting; I think that there are some churches that are struggling. But I think, overall, that the African American churches--Baptist churches, specifically-feel like you've done something wrong: You were a naughty girl, naughty boy; that's why you're in the situation that you're in, and you're going to experience eternal fire and damnation for it, even though deacon such-and-such is having sex with the parishioners, and is probably having sex with deacon so-and-so as well. But none of that is up for discussion. You wear a scarlet letter if you're an HIV-positive person in the church, or if you're gay, or both.

Webb: There was a paramedic in Akron who couldn't coach his son's baseball team because he had contracted HIV through work. When I first saw that on TV I thought, if he was a gay father and was HIV positive, would all these people have been rallying behind him to coach his son's team? I wondered: Oh, it's because he's a straight, white, heterosexual male and contracted it through work; that's why all these parents are saying he's really is a great coach and he's worked with the kids for years.

Pike: When I met my partner, she was working in AIDS, so she knows a lot about this, but there are still times when I come home so emotionally full of both AIDS itself and the politics of AIDS that I can hardly speak. I try and tell her what's going on, but what I feel inside is "you can't possibly understand what it's all about."

Doerfer: Sometimes I go a little too far, where somebody will tell me something and I'll think it's minor because it's not as major as what I dealt with. I'll think, "Oh, so that was your biggest problem?" I have to really catch myself and really work on it to not totally belittle other people's issues. My partner's a social worker and she works in domestic violence; it's not like it's light.

Pike: I want to add to that that I'm also aware that it's made me a sadder person. Eighteen years working in AIDS and hundreds of people lost. You carry that sadness with you; I carry that sadness with me. I sort of came to the realization some time ago that it's not like you get rid of it. It's that you use the sadness to some purpose, and the purpose is to make the rest of the world feel the epidemic.

That you say to the world, with the emotion right there: "Seventy-five million people infected since the beginning; officially the worst epidemic in human history-don't you understand?" You use it to get people to act,

to change.

Karen Auble is a staff member at the AIDS Taskforce of Greater Cleveland.

"It's nice to meet you."

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