PWN at 20: If HIV is A Woman’s Issue, Why Don’t Women Speak Out?

In this, our twentieth year, we’re featuring a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Last month we looked at why the "where" is as important as the "how."

From the get go, Positive Women’s Network has supported women to make choices about their own health and how they navigate the world with HIV. This also applies when it comes to public speaking. Some women are comfortable sharing their stories publicly and others just aren’t.

It’s not easy to disclose to anyone you have HIV, let alone an audience for the 6 o’clock news. On TV or radio, you never know who is listening or watching. At a conference, you don’t know who might be there. In a publication, you don’t know where it might end up. To agree to open your life is to lose control of where the story goes after that- it will spin away on its own, as stories do.

What Have You Got To Lose?

People fear losing the security of friends, family, coworkers, jobs, homes, or opportunities. They worry that they might lose custody of their children, or that their children might lose friends. Some partners forbid women to access support services, let alone speak openly about HIV. Whether these things are real or even legal or not doesn’t always matter to the person with apprehension.

Nevertheless, there are women who have gone public in various media. Some speak quietly, using an alias and choosing print to protect their privacy as much as they can. Others share their name and family details on TV or at International conferences. No one way is better than another. Anyone who speaks up about such a publicly stigmatized and privately transformative diagnosis is great in my book.

This kind of activism can be hard, because it’s so personal. Supporting the women and men who speak out is an important piece of community wellness, not to mention human kindness. I’ve seen people cycle in and out of public speaking. They can feel a fire to get out there, and then feel so drained from the inquisitiveness and soul-baring they need time to regain energy and privacy. A bold speaker one year may say no to everything when she’s in a different season or stage of life.

Since I started here at PWN, I’ve seen women speakers delivered amazing personal stories. Here are three themes that were true then and are still true now.

It doesn’t matter how you get HIV. Everyone deserves decent care and support

Evelyn, one PWN’s founders, would refuse to tell students how she was infected when she did her rounds at high schools. She argued it would allow people to make a separation between her and themselves. Making that separation would be a mental safety net, she explained. A grandmother who spoke in front of an international audience at AIDS 1996 here in Vancouver echoed the same thing when asked how she was infected: “It just doesn’t matter.”

Women have turned this question around for their audiences, challenging them to think about their own knowledge about HIV prevention, rather than risks that someone else encountered. What’s more important?

HIV is not just for those [fill in the blank] people

Charlotte came out to her Northern BC community not long after she was diagnosed 20 years ago. She wanted to put a face to the disease that her community saw as a “white man’s disease.” She is neither.

Kecia traveled across the country with the message that young women are at risk (she was diagnosed as a teen). Seeing that women account for close to half (49%) of new diagnoses among Aboriginal people,  compared to 21% in the general population, a statistic that cries out for voices like Charlotte’s and Kecia’s.

Women have spoken out to present the many pieces of their lives that represent numerous groups. They are immigrant, middle class, full time workers, single moms, over 50, lesbians, homeless, drug users, trauma survivors, of various ethnic and spiritual backgrounds and much more. In other words, a diverse representation of women. That’s who gets HIV. 

HIV Can Be Different for Women than it is for Men

Power imbalances in relationships, and the control and violence that can ensue. Pregnancy and parenting issues. Biological differences in how HIV infects and affects a woman’s body in comparison to a man’s. Histories of sexual, emotional and physical trauma. Differences in how side effects appear in women and men. These are just a few of the multiple differences that women have shared about as they tangle with HIV. And women have spoken up: Sacha, Sidney and Christina are just a few you can read about on this site. Others have spoken their truths over the years to various audiences.

The messages are still true. And there are so many details! Details of lives that deserve respect and support. Figuring out how PHAs can share their stories with comfort and dignity strengthens this community.

- Janet

This was posted on Friday, April 1st, 2011 at 6:00 am and is filed under Daily Moments, Education & Resources, HIV Prevention, HIV progression, HIV stigma, Networking, PWN at 20, sexual health, Spiritual and Emotional Health, Violence . Feel free to respond, or trackback. Read our comments policy.

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