Building an Organized Voice for U.S. Women Living With HIV
Part One of a Two-Part Conversation With Founding Members of the Positive Women's Network of the United States of America
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.
Olivia Ford: Looking back at the five years since the first convening in June 2008, what are some examples of events, or advances, that benefit women living with HIV in the U.S. that you believe wouldn't have happened if PWN-USA did not exist?
Pat Kelly Wilks: I have something: The PWN Southern Summit. Women from the South got an opportunity to really meet some other powerful women working in the field and making changes for us, for themselves. It left those women really on fire to move forward and do something where they were at.
For me, it was so powerful to get there. It was held in Fort Walton Beach, Fla., in the two-and-a-half days before the Positive Living Conference that's held there every year. It was for women living with HIV in the South. South Carolina, I believe, had the highest number of women come. There were women from Georgia, South Carolina, Louisiana ... Kentucky? I can't remember all the places.
It brought the women together, and they got a chance to be educated on some things that no one was willing to educate them on.
Naina Khanna: It was amazing. We had over 50 women living with HIV come to the summit. They were all self-supporting. While we covered accommodations and food, they all got themselves there. They were phenomenal. I mean, they self-organized vans. They drove like vans of eight women for eight hours down to Fort Walton Beach to participate in the summit.
It was really incredible just to see the motivation, and the inspiration. It was a very intense two-and-a-half days. We did a lot of leadership skills building. We talked about human rights. We talked about reproductive justice. We had some really hard conversations about criminalization, and how it impacts women, and violence.
We danced. We did a whole lot of stuff. We trained women. We did workshops on data for social justice -- understanding surveillance data so that you can be a good advocate. So we trained women on hard skills. We also had workshops on things like holistic leadership.
Something that was really incredible, coming out of that summit, was women left with increased networks of other advocates they could work with, increased skills -- kind of hard skills in specific areas, including communications, public speaking, policy analysis, even a human rights framework. And now, about a year and a half later, a lot of those women are still in touch with each other, and still in touch with us, at a national level. So, we are continuing to engage the advocates.
We also wanted to maximize engagement with campaigns that were already happening in the South. So, there's a lot of great work happening with the Southern AIDS Strategy Initiative, and the Treatment Access Expansion Project, working on looking at Affordable Care Act implementation without the Medicaid extension. We had folks from those projects come and present and talk to the women, and help to plug the women into those opportunities, as well, so they could be involved regularly.
So, that was the summit. It was fantastic. It was, I think, exactly a reflection of what PWN does well: love each other; learn together; create a supportive, safe environment for learning.
Waheedah Shabazz-El: I want to talk a little bit about the National AIDS Strategy working groups that some of our members have been stakeholders and consultants on. The National AIDS Strategy is the first ever in the U.S. It is a historic document. We didn't feel we were very well represented in the National AIDS Strategy, but PWN, along with other women's groups with intersectional issues, we pushed and pushed and pushed. And now, we have a federal working group to address the intersection between violence and HIV acquisition that would not have happened had there not been a PWN.
The Women and PrEP Working Group was another one that wound up at the White House -- again, having HIV-positive women represented by a group of women who wanted to go to the White House to talk about: more methods of putting prevention in the hands of women, other than what we have currently, which is FC2, the female condom; stepping up research; and making sure the information is getting out to women, and women living with HIV, that pre-exposure prophylaxis is available -- if our providers educate communities for them to know that.
Also, we had a plenary speaker at the International AIDS Conference in Vienna after that. That was in 2010. Then we had another plenary speaker at the International AIDS Conference in Washington, D.C. And there will definitely be plenary speakers at the International AIDS Conference in Melbourne in 2014, because that is something that the planners of the conference know must happen.
Vanessa Johnson: I started doing human rights trainings for PWN in the very beginning, with Brook Kelly, who was a staff member of PWN. PWN has a different perspective on what's happening with HIV in the country -- I'm sure they're not the first, but it was the first time I really paid attention to it -- and that's the social justice perspective.
I thought it was a very interesting way to look at what is happening to a group of people being impacted by disease, and saying that there's a larger context in which we need to look at this. We're not just dealing with the disease.
I know that's been said at many times, in many ways, but I think they were the first group that I really thought operationalized that perspective in such a way that folks could really understand, when they said social justice, what they meant by social justice.
One of the issues that I thought really exemplified that was the issue around HIV criminalization, and providing the forum and the leadership to really talk about, not just HIV in the context of sexual relations, but criminalization in terms of how it can bring harm to a woman. So, we're talking about incarcerations, but we need also to be mindful of the fact that in people's homes they may be suffering a different incarceration than what we would have ever thought of from this issue.
The young woman [Cicely Bolden] dying in Dallas really brought home to me the fact that if PWN didn't exist, I'm sure there would have been some buzz about her death, but I'm not sure it would have been to the point where people kept a watchful eye on how that court case was going to be handled, and whether she was going to be treated with respect and dignity. That's social justice.
Naina Khanna: To add to Vanessa's point: The criminalization conversation among women has been really, I think, different, just to put it in context, than the criminalization conversation perhaps in the MSM [men who have sex with men] community. A lot of times, women have been used as an excuse to push criminalization legislation, in the same way that policing of women's sexuality and reproduction has happened over the years. It's done in this very paternalistic way of, We need to do this to protect these innocent women -- or these women who don't know what's best for them, or women who can't make informed choices, and things like that.
Part of what PWN has been able to do is help to shift the needle on that conversation within the community of women living with HIV who, in some cases, have internalized that those laws may be in place to protect other women. By putting it in a human rights framework, we're able to make the links in a different way to show how a violation of anyone's rights is really a violation of all our rights, and does not contribute to us living in a world that is dignified, and free, and respectful of our full human rights.
Vanessa Johnson: The other point I wanted to make was that we have to look at criminalization as more than just leading to a conviction, leading to incarceration, leading to sex offender status -- that there are so many other different repercussions resulting from so-called nondisclosure of HIV.
Even though I always believed that disclosure should be voluntary, I have not always been empathetic to people who have not been able to disclose. I think I have been sympathetic, but empathy is different. So, I am more empathetic to people who are not able to disclose, for whatever reason they're not able to disclose. My anger doesn't come up as much as it used to.
Naina referred earlier to how there are so few of us who are willing to be out front. I know that PWN is changing that. Maybe that's why my stance is changing, because I am seeing more women. But always, in the back of my mind, is, Who is going to speak for me when I can't speak for myself?
I think part of what Naina is saying is true, that we are speaking for ourselves -- whether it's criminalization, or whether it's the National HIV/AIDS Strategy that Waheedah was talking about, or whether it's just policing our own thought process, and our own belief system, as women living with HIV in the United States.
Waheedah Shabazz-El: Another thing: PWN came up with a gender lens which we use to grade policies, programs. We actually applied this gender lens to the National AIDS Strategy to see if we saw ourselves there.
It was lacking in research initiatives for women. We did not see ourselves there. We were in a lot of subcategories. We were hidden so far into the subcategories that we just felt that we were pretty much invisible when it came to the National AIDS Strategy.
But by using a gender lens, we're able to use that perspective when we're looking at anything now. Even when we looked at the Tyler Perry movie, Temptation, and we saw a lot of stigma and negative connotations about people living with HIV. It is from that gender lens perspective that I'm able to look at something more analytically now than I was before. This is one of the tools that is available to all of our women; we train you on that, first of all, as citizens, we have a right to analyze and critique. And, living in a democracy, we have a responsibility to actually challenge our decision makers and face the media.
We've created lots of tools that women didn't have in our last five years. So many of them are freely available right on our website. We have fact sheets that are available on our website -- one-pagers, to use when we go out and we represent PWN-USA. Once we do the research, we lay it on the website. Sometimes, to get the language, and to get a sense of PWN's recommendations, it's as easy as going on the website and printing out a fact sheet.
Naina Khanna: PWN-USA's existence really highlights the difference between individual representation and the power of network-based representation -- which are really different things. For years, women living with HIV, and people living with HIV, have often been tokenized in processes or at decision-making tables: "Come represent people with HIV," or, "Come represent women living with HIV." And then they can check that box and say they had a woman living with HIV involved in this meeting, or this discussion, or this conversation, or this planning process.
Part of what PWN-USA has been able to shift is what representation looks like, in terms of being a group that is accountable to a larger constituency. Some advocacy groups or organizations, or federal agencies, understand that when they call PWN-USA, they're not calling the individual; they're calling a network. And they're calling a network that is accountable to and will consult with a larger base, or has already established a position with a constituency, and is going to take that position forward.
Sometimes, though, folks don't understand that. But either way, when PWN-USA goes to a meeting to represent women's issues, we represent PWN-USA, not an individual. So if that means that we, as a network, need to do some research on an issue before we go there, and prepare whoever is going, and support them with talking points, then that's what we do.
When the whole debate started to happen about a year and a half ago around the rollout of PrEP in the U.S., and what it would mean for women, and how it would play out for women living with HIV, we realized that we really didn't have a position on this. We didn't know what women living with HIV thought. And so we had a lot of discussion over our policy listservs, on conference calls with our network, with groups of women, locally and regionally.
We came up with a position paper that we released at the International AIDS Conference. Because we were being asked to weigh in, in a number of ways, and we were finding that women living with HIV didn't feel like they had the tools and the resources or the information to weigh in, in an informed way. So we created a paper that could be a resource.
I would say that's just another example of the way that we've been able to shift debate, and shift dialogue, both from the perspective of an individual woman who gets invited to something and then can say, "I have this network to go to to help me get prepared for it ... or help me think about it ... or help me understand what other women around the country are thinking, too, by coming on a conference call, or a webinar, or exchanging information over an email list" -- and for other folks who invite us to sit at their table, by committing themselves to be accountable to our constituency, instead of just representing individually.
This transcript has been edited for clarity.
Read part two of this conversation, 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.
Olivia Ford is the executive editor for TheBody.com and TheBodyPRO.com.