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Be seen, be counted

Among Ourselves . . .

April 1998

Visibility matters. An obvious point, when you think about it. What people see and what people hear impact them directly, and leave a lasting impression.

On a few occasions, this column has addressed the need for women to come forth and be their own advocates for research and treatment funding, and for the development of programs targeted to women and family needs. As much as ever before, HIV-negative women need to hear HIV-positive women; more than ever, HIV-positive women need to meet other HIV-positive women and learn to speak collectively as some of the stronger voices of the past grow softer.

Voices count

In an atmosphere of increasing complacency among the public about the importance of HIV spending, women's voices count. In an atmosphere of increasing complacency about the dangers of HIV, women's voices count. Women's voices count.

In the '80s, a popular slogan in the HIV community was, "Say it! Women get AIDS!" A motto for the late '90s could be, "Remember it! Women's voices count."

There has always been a core group of vibrant, visible women who have spoken out eloquently to educate and to advance, and there have always been those who worked more quietly to tell their stories. In 1998, the numbers of infected women and the numbers who will tell their stories and speak their minds seem to grow more widely apart. To the initiated members of the public at large still unaffected by HIV, who realized long ago that women get AIDS, it is a fact of life which bears unrelenting repetition. To the members of the uninitiated public who think it's all over now, it's worth it to tell them that women, and their children, and their families, are still at risk and are still getting AIDS.

However, when speakers are needed for classes or conferences, finding women who are willing to share their stories and their thoughts in a public forum is still difficult. Focus groups to help formulate government and social programs often lack women participants.

Burden of silence

"My own experience as an HIV-positive woman was that if I was unable to integrate my HIV status in the sum of my being, I would never function as a whole human being," said Nina Marks, a treatment advocate in AIDS Project Los Angeles Treatment Education Program. "The voices and visibility of HIV-positive women who have accepted themselves are compelling and may help other HIV-infected women to relieve themselves from the burden of silence and shame. It begins with honesty."

Hers is the voice of a woman who, like others, has found a means of interweaving HIV into a holistic, everyday experience. For other women, it remains a struggle.

These comments came from articulate, passionate women who regularly work toward achievement in their lives and are open about their HIV status as infrequently as possible.

Lisa, 32, says, "When I talk to strangers about my HIV status, I think I feel them watching me and thinking only about how I was infected, as if that's the most important thing they know about me." Can reluctance to speak out publicly still be a function of how women continue to view themselves as sexual beings? What does that say about our society still?

Lorena, a 29-year-old Latina mother of two children, one of whom is infected, says, "Sometimes I want to tell the world my story so that no other mother ever has to feel like I do." But she doesn't, because the reactions she has gotten thus far from family and others tell her only that she is an infected mother who gave her child a disease. She is not seen as woman who didn't recognize the dangers - just as many other women still do not - and a caring parent, simply as a vector of disease. Is this still a women's issue? Seemingly yes.

Citizen advocacy

Activate! U. is a grass-roots advocacy seminar created by AIDS Project Los Angeles' Policy Department. During the seminar citizen advocates are recruited and trained to write letters to public officials on HIV-related issues, and volunteers are enlisted and trained to meet with public officials. A large percentage of the participants in Activate! U. are people living with HIV.

During the Activate! U. held at APLA in February, only one woman self-identified as being HIV-positive. Often, there are no self-identified women with HIV at Activate! U. at all.

Howard Jacobs, a lobby coordinator in APLA's Grass Roots Program, said that rarely does an openly positive women comfortably speak about her experiences in a Neighborhood Network group, among the numbers of men who can and do speak out.

Especially disturbing is the lack of visibility of particularly affected populations. About African-American women, Jacobs says, "I think it's a voice that is vastly under-reported . . . and I can't find one African-American woman to come forth and talk about it. Why is that the case?"

Silence hurts

The take-home lesson in all this, it appears, is that reluctance to get the histories out there help reinforce stereotypes, which enables other women to downplay the risks to themselves, which causes the legislators to release their grasp on the significance of needs which lie behind the statistics.

- As the population of women grows, the opportunities for invaluable personal support grow when women re in touch with other women.

Howard Jacobs says, "Every time I hear women's stories, I am constantly hearing something new. If I'm hearing something new, what is a legislator hearing?"

"I have a commitment that Neighborhood Network represent the demographics of APLA, including a greater participation on the part of women," said Dana Gorbea-Leon, the new program manager of APLA's Grass Roots Program. "Their voices need to be heard."

If you are a woman with HIV, remember: More than ever, your voice counts!

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).

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This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
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