Building an Organized Voice for U.S. Women Living With HIV
December 2, 2013
Female HIV advocates have been active in responding to the HIV epidemic since its earliest days. Yet there is a dearth of leadership by women, and especially women living with HIV, in HIV organizations and in the communities most greatly impacted by HIV. Enter the Positive Women's Network of the United States of America (PWN-USA, or PWN), which formed in June 2008 -- not only to prepare women living with HIV to be leaders, but to build the strategic power of all women living with HIV in the U.S., and to train a gender equality and human rights lens on the HIV epidemic as a whole. This year saw a milestone in PWN-USA's development, when the network became an independent organization.
In part one of this conversation, five women living with HIV who have been part of PWN-USA since its founding talk about how the network came to be, and the strides made in its first five years. Read part two of the discussion, in which these leaders map PWN-USA's path forward in expanding its work and living its values -- and what this will mean for U.S. women living with HIV in the years to come.
Joining this conversation are: Dee Borrego, a 29-year-old Boston resident and secretary of PWN-USA's board of directors; Vanessa Johnson of Washington, D.C., who is also a member of PWN-USA's board, and has been living with HIV since 1990; PWN-USA's executive director, Naina Khanna, based in Oakland, Calif.; Waheedah Shabazz-El, who received an AIDS diagnosis in 2003, currently serves as vice chair of PWN-USA's board of directors and assists with regional organizing in the Philadelphia area; and Pat Kelly Wilks of Orangeburg, S.C., PWN-USA's board co-parliamentarian, who has been living with HIV for 28 years.
Olivia Ford: Take us back to the founding of PWN-USA, in its earliest incarnation as the U.S. Positive Women's Network.
Naina Khanna: Back in 2007 or so, a number of women living with HIV and some allies across the country started revisiting a conversation that had been going on for a couple of decades, really, about the need for a national organized voice for women living with HIV. A number of folks were involved in the discussion, including Dawn Averitt, who founded The Well Project; Rebecca Denison, who founded WORLD (Women Organized to Respond to Life-Threatening Disease); Vanessa Johnson, who at that time was at the National Association of People With AIDS (NAPWA); and myself. At that time, I was on staff at WORLD.
Maura Riordan, who was at that time executive director of WORLD, and Julie Davids, who at that time was with CHAMP (Community HIV/AIDS Mobilization Project), were working with us to strategize around how to build a national organized voice for women living with HIV. We did a lot of landscaping; we looked back at the herstory ... I was pretty new to the HIV world at that time. But a lot of the women who were involved in the conversation had been around since the early days of the epidemic, certainly since the early '90s, if not before, and active in their communities and nationally. So they were really able to provide a lot of the history and herstory around the epidemic.
We thought that it was really important that we convene some leaders from across the country to start talking about what it would look like if we were all working together more strategically. We convened a national meeting in San Francisco in June 2008. All of the women who are part of this conversation today, plus about 23 other women, were at the meeting.
It was a very diverse group of women living with HIV. We were young women. We were mature women. I think the youngest was 21, and the oldest was around 72. We had women from all over the country: women who had been born in the U.S.; women born outside the U.S. But the one thing that we all had in common was that we were all women living with HIV, and we were all taking some kind of leadership in our own communities.
We came together around a common vision, and it's out of that that Positive Women's Network - USA was first born.
Vanessa Johnson: One of the things I was attracted to when Naina approached me about the desire to start an organization of this nature was just organizing something so that women could come together. I had come to NAPWA because NAPWA, at that time, was the representative voice of people living with HIV in the United States. However, that was not the perception of people outside of NAPWA.
When you look at NAPWA's history, the focus population changed as the population impacted came to prominence in the organization. So, in the early days of NAPWA, white gay men were the predominant focal point of that organization's activities. And even though the epidemic changed to where people of color, African Americans and Latinos, were the predominantly impacted populations, that did not necessarily mean that there was any focus on women. It continued to be on men.
It took a number of women, pointing to me from the outside, saying, "This organization does not represent me." So, I was very keenly interested when Naina came to me and said, "What do you think about this?" At that time, Naina and I were both members of the National Women and AIDS Collective. Even among allied women, it became clear that there was a need to have a voice that was distinctly for women living with HIV.
Naina Khanna: One other thing that we were aware of at that time was that the national advocates who were speaking on behalf of women living with HIV, who were identified, out HIV-positive women, first of all, were really few and far between. Second, they'd been doing the work for a long time and were very tired. Many were wanting to retire, or move on, or go do something else. Third, they were no longer really reflective of the demographics of the epidemic among women.
In that context, we were talking and listening to women who had been in this fight for a long time, who were wanting to pass on the torch of leadership and not necessarily having an army of soldiers, so to speak, to pass it on to. That was part of the impetus for forming this national network of women, and training women as leaders, as well: to shift the way power was held; create more shared power; create more opportunities for women to lead; and build power and opportunities for leadership in the communities that were most impacted by HIV.
Dee Borrego: As one of the younger people involved, the founding was really inspiring to me, to be able to get to see some activists who'd been living with HIV for as long as I'd been alive, and to see the struggles that they'd been dealing with, and to see how they had handled them. It was a great honor to be able to participate and be part of learning from a generation that's dealt with HIV for so long, and has so much to teach younger people.
My involvement came around because I had just started working in the HIV field at that time, and was relatively newly diagnosed, and found out about it online through a coworker. I applied to come to the convening, and that was that.
Pat Kelly Wilks: For me, it was through WORLD. I went to WORLD's Lotus Project training. That was a phenomenal training for me to meet other positive women that were out in the community doing work. I had relocated from New York to South Carolina, in a rural area. There wasn't any women's organization in my area, or available to me. After the Lotus training, I wanted to know: What could we do next?
When WORLD came with the opportunity for me to be a part of PWN, I was jumping off the roof; I was saying, "Yes! Yes!" That was my step into doing things on a national level. I've been gung ho and keeping it going ever since. Because PWN rocks!
Waheedah Shabazz-El: For me, in 2008, when I first heard about the convening, I was actually a member of CHAMP. I was working as their national organizer. Julie Davids was the executive director; she was also a consultant on PWN's project that year. She was actually the one who told me about it, and said that I should probably try to put an application in. And so I did, and got accepted.
It was phenomenal, just the energy and the power that was there in that room that day. It still permeates. And now it permeates all over the world. But the energy that was harnessed that day in that room, I'll just never forget.
The void that I felt that we were going to fill was that we didn't have our own voices. We had all been a part of campaigns on behalf of people living with HIV. But they weren't led by women living with HIV. And there were not specific campaign issues that would truly benefit women.
I've always heard the statement, "Nothing about us without us." I felt that we had the opportunity to make that statement come to life. I felt that we had the opportunity to share some of the empowerment tools that we all possess with other women just like us. And I've always felt that the messenger matters. We had the opportunity to shape our own destiny as women living with HIV.
We've also been referred to as the "five-star generals." The women in Colorado always refer to us as the five-star generals. We started making herstory that had never been done before. And I'm just so proud to be a part of that.