PWN at 20: The Strength in Partnership

Happy New Year and welcome to the beginning of our twentieth anniversary year. Yes, twenty years. The situation for women living with HIV in Canada has changed a lot in the last two decades.  And, not so much. The issues that spurred some thoughtful women to start PWN still exist today. In this, our twentieth year, we’ll feature a monthly blog series, PWN at 20 that looks at PWN’s unique place in Canada. Today? The Strength in Partnership, or why positive women thought PWN should buck the PWA only system of the time.

In the early days of HIV in Canada, there was the wildfire of infection. People moved from diagnosis to death quickly, with no options for treatment. HIV hit the gay men’s community hard – here today, gone next week. The media coverage called it gay related immunodeficiency syndrome and gave rise to homophobic voices that said that gays should be left to die. In response, gay men joined forces to support their community, speak up (not to mention ACT UP) and demand action.

But when women surprisingly began to be diagnosed, it became apparent that this wasn’t a disease that “chose” a community, it was just a disease that was passed through the opportunity of unsafe sex, blood transfusions, or sharing needles and drug using equipment.  And while women shared the devastation of diagnosis and adjustment to life’s expectations, there were some things that they couldn’t share with most men in the gay community.

Women wanted to know if they could still become mothers. They wanted to know if they could kiss the children they had, or if hugging their children might infect them. They needed to know how to care for their children who were infected, and get support for the ones they’d lost.

They needed to learn if their partners could take their kids away from them because of HIV. If they could leave a husband who beat them for “bringing HIV home.” If there was anything to deal with the gynecological woes of an immune system gone wacky.

The women who started PWN were tired already. They saw the burnout and the death around them as their gay friends tried to look after their lovers and themselves, and often failed. Discussions about how support for women would look were started by women with HIV and allies who weren’t infected, but could see the damage it was causing. Over a year or so, the conversation that started amongst a few evolved into a phone support line, and then became the Positive Women’s Network in 1991. Ideas for support programming and what became Health Promotion were generated with great hope, and the organization scored its first program funding from Health Canada in 1993.

The founding members of PWN who were positive made it clear that they couldn’t do all the work. They said they didn’t have it in them in energy or in terms of the non-profit experience needed to provide the emotional support, advocacy and research work required to really give women what they needed. And what they would need as the numbers of HIV+ women increased and the complexities did too- violence, racism, immigration, mental health, addictions, and poverty were themes that presented themselves time and again. The positive women believed in the value of peer support, having benefitted from it. They knew that the work must be informed by women who knew the reality of living with HIV, but they also knew a lot more than peer support had to go on behind the scenes for programs to reach as many women as possible. The partnership of positive women and allies evolved, solidified and strengthened. And in doing so, it made other opportunities possible for positive women.

All of the women who started PWN felt strongly that positive women who wanted to work or volunteer at PWN shouldn’t be required to disclose their status to everyone in the Network. They recognized that it was a complex issue, and should be a decision a woman made on her own when she was ready. There were women who did disclose and immediately accessed peer support and programming. And there were those who didn’t, but through their connection to PWN and the few they did disclose to privately, benefitted as they felt comfortable doing.  Some eventually disclosed, others didn’t, but continued to get what they needed privately. Having an "instant community" based on a medical diagnosis works well for some but not for all. Every woman gets to decide what works for her.

We have always worked from the principle that we meet women where they’re at. No pressure. It’s caused complications at times, but it respects the right of women to choose when and how they disclose. It’s made it safer for some women to come to terms with their diagnosis. 

The goal behind the conversations in the early days was about how all women who were passionate about the issues could honour HIV+ women’s needs and get the work done. We’re all in this together, was the attitude. And we were.

We still are. And the partnership is still strong.

- Janet

This was posted on Friday, January 7th, 2011 at 9:28 am and is filed under Daily Moments, HIV pregnancy, HIV Prevention, HIV progression, HIV stigma, HIV Transmission, HIV Treatment, Homophobia, Networking, PWN at 20, Risk factor, sexual health, Special Events, Spiritual and Emotional Health, Support . Feel free to respond, or trackback. Read our comments policy.

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