Building a Strategic Plan by and for U.S. Women Living With HIV: Improving Lives, Upholding Rights

Part Two of a Two-Part Conversation With Founding Members of the Positive Women's Network of the United States of America

Contributing Editor
Pat Kelly Wilks
Dee Borrego Vanessa Johnson Naina Khanna Waheedah Shabazz-El Pat Kelly Wilks

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 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's development, when the network became an independent organization.

In part two of this conversation, five women living with HIV who have been part of PWN-USA since its founding talk about 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. Read part one of the discussion, in which these leaders talk about how the network came to be, and the strides made in its first five years.

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: Earlier this year, the U.S Positive Women's Network (PWN) became the Positive Women's Network of the United States of America (PWN-USA), and became an independent organization. What does that mean, exactly? What has changed, and what will change, in terms of your work?

Vanessa Johnson: I've had a lot of discussions with the ladies in this conversation, in terms of how PWN-USA, in particular, has broadened my whole perspective on how HIV has impacted women's lives in America. For example, I've worked on two really great projects. One was the strategic planning process. What was thrilling to me was that a group of women could work very intensely and come up with a really good product that would enable other women who are part of a group -- other boards of directors, and other stakeholders -- to really have a voice in how this organization was going to move forward.

I just have to give kudos to Naina, because I think that's how she has operated from the time this organization came into being, always ensuring that everybody had a place at the table. There's a true coming together at the table, at the kitchen table. You know how you have those big family dinners on the weekends, and everybody's at the table, and everybody's just talking and animated? And at the end everybody feels good, because they feel like they were heard? Well, that's kind of how this process was. I've been through strategic planning processes before, and it's not like that. So to really see it from the very beginning to the end, was an illuminating process for me.

I've also worked on a sexual and reproductive health and rights project. That had never been my perspective as a woman. I have a very Afrocentric perspective; if we're talking about black people, I get it right away. For women, it was harder for me to wrap my head around, because I never really thought of myself in those terms. I always, first and foremost, thought of myself as a black woman, woman being second. To go through this process about sexual and reproductive health and rights, and really understand what choice means, and what true decision making is, was ... It brings tears to my eyes now. It's like ... I can't describe it. I know it's changed me. And I hope that it will deepen my work in this field.

Pat Kelly Wilks: I feel as though we are now officially FUBU -- for us, by us. And that's what I have been looking for. Because so many people have always been telling me what I need, telling me what should be done for me, and now I'm a part of the action. We are the ones making the changes that we know we all need. That's been real powerful for me -- and to be involved in the learning process, too, of really looking at HIV from a human rights perspective, and bringing that to my area. Nobody has ever looked at that, and PWN-USA did that for us women in South Carolina.

We always said, from the very beginning, that we would move off to be our own entity. And we did what we said we were going to do! So, watch out, people. We're doing it.

Olivia Ford: That's interesting that becoming an independent organization was always part of the mission, part of the plan, even when PWN was part of WORLD.

Waheedah Shabazz-El: Yes, it was. Even at the convening, we all discussed what it would look like one day to grow from that room, to grow from a project, to being our own entity. And when the time actually came, when we were able to make that leap (because I believe that's what it was), I knew that we were making history. I knew that we were going to save lives on a larger scale. I knew we were going to be able to empower women to learn to advocate for themselves.

We had this set of values that we had put together, that we now call our theory of change. So we're even changing our language as we've grown. Being our own entity gives weight to the voices of women living with HIV. It gives our voices credibility.

And we do value the well-informed, well-meaning allies. But unless you've lived it, unless it's your reality, then you need to step back -- in terms of step forward, step back -- so right now, we're driving the vehicle. We have listening sessions that are constituent driven. The work that we do now is a strategic plan that comes out of the hearts and the souls of our constituents, who we take time to listen to. I think that's really important.

Naina Khanna: In terms of how being an independent organization has allowed us to broaden our work, and our focus: The transition was amazing. We are now living our destiny, which was always, as Pat said, to be an organization by and for women living with HIV.

An example of what we've been able to do, now that we have more flexibility in terms of our structure and our decision making, and truly being accountable to our constituency and to our leadership, in terms of the issues we choose to take on and the priorities we set: We've been able to really live our values around economic justice for women living with HIV. Just in this last year we have had 16 different paid consultants working on PWN-USA projects; 14 of them have been women living with HIV.

Having more flexibility to really be nimble, and create work plans, and implement them in a way that's really in line with our values, is just one example of the way that we're able to do our work as an independent organization.

Overview of PWN-USA Strategic Plan 2014-2016

Olivia Ford: Talk about the results of the strategic planning process. What are PWN-USA's plans, in terms of communicating with a larger body of women living with HIV in the U.S.?

Naina Khanna: We just released our 2014-2016 strategic plan. We are going to circle back with our constituents and stakeholders, and probably do a conference call early next year, to see if there are any questions, or anything like that, coming up about it, and if people have feedback -- because we did involve about 175 women living with HIV as stakeholders in the process, in addition to a number of other stakeholders.

We have a strategic planning committee that was entirely led by women living with HIV. Vanessa was a key member of that committee.

Vanessa Johnson: There was some overlapping development of the organization as we were proceeding with the process: We elected officers in April, and launched the strategic planning process in May. Naina was coming in as executive director, and I was a member of the board. We had two other board members, and then a member who was not necessarily on the board of directors. It was a five-person team that was the actual nucleus of the strategic planning process.

We came up with surveys; but we realized early on that a lot of women's voices might be missed if we just went by online surveys, because a lot of women don't have the technology, in terms of accessing the Internet. And some of us prefer not to be responsive to a survey. So they set up listening sessions. Those were really powerful sessions, because you actually got to hear the women's voices, and hear them speak about what they thought was important in their lives, and how PWN-USA could address those issues.

We had stakeholder meetings. Our stakeholder meetings involved government officials, leaders of other national advocacy organizations, funders. This was a very wide-reaching process, in terms of who we were seeking information from.

The goal was twofold: to figure out how those organizations felt about PWN-USA; but also to figure out, in the future, where we could strengthen existing relationships, or pursue new relationships with different people.

"We asked very specific questions about different aspects of the work that we were doing: the policy work, the leadership development work, the regional organizing work, the anti-stigma work. Everybody said, 'Yes, you need to be doing what you're doing.' But mostly what they told us is that we needed to be doing _more_." -- Naina Khanna

Naina Khanna: In terms of the goals that we went into the strategic planning process with: We were in a moment of transition. It was a great opportunity for us to revisit and reexamine our mission, look at what we were doing well, what we were not doing so well, whether there was room for improvement, look at the external environment, assess some opportunities -- and really think about how to live our mission better. Was it even the right mission? Were we really doing what we needed to be doing? And how could we do it better?

What we heard back from our stakeholders and our constituents (who really are our most key stakeholders) was mostly a resounding yes. Yes, PWN-USA is necessary. Yes, you all need to be doing what you're doing. We asked very specific questions about different aspects of the work that we were doing: the policy work, the leadership development work, the regional organizing work, the anti-stigma work.

Everybody said, "Yes, you need to be doing what you're doing." But mostly what they told us is that we needed to be doing more. So what we walked away with, I think, from our data gathering and data analysis, was a sense that PWN-USA is very much a necessary entity. It is literally responsible for creating a space for women that they didn't have before, creating a sense of community, sisterhood, networking, access to information that women didn't have.

I think one of our key questions was: How necessary are we? How important is the work that we're doing? We definitely found that it was really important.

We found that PWN-USA is a gateway to other advocacy work and other advocacy opportunities. A lot of the women who participate in PWN-USA's work are also active in other groups now. And PWN-USA has been, in many ways, responsible for helping to equip them with some of the tools and the resources and the support to feel comfortable going into those spaces and engaging in those conversations.

Going through this process also helped us to really prioritize our focus. Part of what we found is that we needed to be focusing more on supporting women where they are. We focused a lot on federal advocacy in the past, and national work, and we will continue to do that. But what we heard very much from our constituents -- and we also specifically surveyed our regional organizers -- was that women needed a way to feel supported to do more local and state-level advocacy work.

That was also very much our assessment of the external environment -- what with the Affordable Care Act implementation, criminalization law advocacy, and other things that are playing out at the state level.

One of our commitments over the next couple of years is to really step up support for local and state-level organizing by women living with HIV. That's one area where we've shifted our focus a little bit. That's reflected in the staff positions that we're hiring for right now; we're hiring for a staff position to support that work.

Waheedah Shabazz-El: Through our strategic planning process, we actually went in and decided that we needed to change our own language. Even within our own group, we changed our own language to make sure it was inclusive of all women, and all our diversities, and all our genders, and all our sexual expressions. That's an internal manifestation that would not have happened had we not stayed together. So there were external victories, and then there were internal victories.

Dee Borrego: Just to expand a little further on what Waheedah was saying: From the get-go, PWN has been a very inclusive organization of all women, including transgender women. Over the years that's really continued to grow, and we continue to be an inclusive organization.

Over the past few months, as we've incorporated as a new organization, as we've reviewed our mission and our values, part of the fine honing of that language included really finding language that made all women feel included, and that they could be part of PWN. It's been a really interesting process. For me, it's been a really great accomplishment, that we've been able to learn, and talk, and teach one another so much about how we can relate with one another, and how we can interact in a way that's going to make everyone feel positive about the situation, and really feel welcome.

I've also been part of helping to create a tool kit that we'll be launching this year, for our regional organizations. Women in different areas in the country can come together and have some ideas, and some guidance for how to form a regional chapter. That's been a really exciting thing I've been working on with PWN. I definitely didn't do it alone, but I was definitely involved in that.

Waheedah Shabazz-El: That tool kit will soon be available. If people are interested in regional organizing, and in forming regional chapters of PWN-USA, they are welcome to contact us to get more information.

Olivia Ford: What's one thing that each of you wants to see PWN-USA be part of accomplishing in the next five years, and beyond?

Waheedah Shabazz-El: What I would like to see in the future are statewide campaigns led by PWN-USA regional chapters, challenging stigma, criminalization, violations of reproductive and sexual rights. I'd also like to see two or three more leveled tiers of leadership.

Vanessa Johnson: I'm going to piggyback off what Waheedah said and say that what I would like to see is how we can continue to grow this model of leadership, because it's a different style of leadership. Most of the organizations I have been involved in have been dominated by hired males, and so there's a distinctive type of leadership that's exhibited in those entities.

It's primarily hierarchical, and can be very contentious. I hope that we continue on the path that we're on -- because it can show folks like myself, or other women who might be afraid to get into the fray because of what they have experienced with other organizations, or experienced with other people, that leadership really can be a team experience.

I know Margaret Mead's quote is: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has" -- but I think that maybe PWN is changing that paradigm, and it really can be a larger group of people moving in the same direction that will change the world.

"What I'd like to see for PWN in the next five years is to ... become the leading force and power for women living with HIV in these United States." -- Pat Kelly Wilks

Pat Kelly Wilks: What I'd like to see for PWN in the next five years is PWN in everybody's mouth, and their mentioning how we got to where we're going, and we become the leading force and power for women living with HIV in these United States.

Dee Borrego: I think my vision for the future, much aligned with what everyone else is saying, is that we continue to grow as an organization and continue being leaders, and to be the leading voices for women living with HIV in this country.

One of my personal hopes is that we continue to expand our network to really include people for whom English is not their first spoken language -- for instance, Spanish speakers. I think it's really important that we embrace all the diversity that we have. I know that's something we've talked about. And I hope that we'll be able to do that in the next five and a half years, and keep doing it.

Naina Khanna: In the next year or two, in terms of thinking about our strategic plan and what to expect from us, I think there are a few things.

Number one is that we will continue to lead, and to commit to becoming better leaders, and developing more leaders, and leadership that is more inclusive, and more diverse. So, part of what we're going to really be exploring is how to more meaningfully involve women living with HIV in advocacy work who are at different places on the disclosure spectrum. That's a commitment that we've made as an organization: to try to make more mechanisms and opportunities for women to be involved in advocacy, even if they're less disclosed. So that's something that you can expect to see from us in the next year or two, is a concrete plan and some goals around how to implement that.

Second, building on this theme of expanding and diversifying leadership, we're going to be hosting next year our first ever national summit. It will be sort of modeled after the Southern Summit that we did in 2012, but this will be national, for women from all over the country. That will be in fall 2014. That announcement is going to be coming soon, as well, with details and a save-the-date.

Third, in terms of some of the issues we're going to be working on, you can expect to see an increased focus on this issue around trauma -- the intersection between trauma and HIV -- at a policy level, but also at a programmatic level, and thinking about how we address trauma for women living with HIV who are leaders within our network; and also how we, as leaders, on behalf of women living with HIV, are pushing for policy and programmatic solutions that promote healing from trauma for women who are in systems of care. So that's something that we're going to continue to work on. We started to work on it already a little bit, and a couple of folks alluded to it already, in this conversation.

We are going to be scaling up our focus on anti-stigma work in the media. So, following up on the Tyler Perry type of work, we're going to be continuing to call out instances of stigma in the media, and work on holding media accountable to that, and continue to work with our strategic communications team to have a network of women who are prepared to respond to those kinds of situations.

Also, kind of building off the work that has most recently been done around sexual and reproductive health and rights, we've released a framework document looking at the state of sexual and reproductive rights for women living with HIV. And we looked at it really not just in a policy context, not just in the context of the literature -- we incorporated a policy scan and a literature review -- but we also talk directly to women about their own experiences. The entire research design, the entire project, was designed and led and written and edited and analyzed by women living with HIV.

In that process, we asked questions that nobody else has really asked before: questions about how women are experiencing their bodies post-diagnosis; how they feel about sexuality; how they feel about relationships; how they feel about leaving relationships, given their HIV diagnosis; a whole range of things. The research that has come out of that has been really powerful and, we think, is really a catalyst for change.

"Another thing that we're committed to is continuing to produce that type of original research, where the questions are really designed and generated by women living with HIV, because they address the real issues going on in our lives." -- Naina Khanna

Another thing that we're committed to is continuing to produce that type of original research, where the questions are really designed and generated by women living with HIV, because they address the real issues going on in our lives. And so that's something you can expect to see continuing to come from us.

Olivia Ford: If you could sum up PWN-USA's overarching mission or goal in just one word of your own choosing, what would that word be?

Waheedah Shabazz-El: The one word I would leave you with is ... I would say empowerment.

Vanessa Johnson: My word would be welcoming.

Pat Kelly Wilks: My word would be shaker-makers. But that's not a word, so I'll put powerful.

Waheedah Shabazz-El: You're going to make it a word, Pat.

Vanessa Johnson: You know, a word's a word if you say it, girl.

Pat Kelly Wilks: Yeah. A force to be reckoned with.

Dee Borrego: I'm going to go with Pat's word: shaker-makers. Because I like it. It's a good word. Even if she doesn't say it's a word; I say it's a word!

Naina Khanna: My word would be sisterhood.

Olivia Ford: Is there any question during the course of the interview that you wished had been asked, that you'd like to ask and answer now?

Naina Khanna: One thing that we haven't really talked about is the role of other entities that PWN-USA helps to support and participate in. A lot of our really important work is also done through partnerships and coalitions and collaborations -- because we can't, by any means, do all the work alone, nor do we have the expertise or the resources to do it.

A lot of really important work is happening through the 30 for 30 Campaign, for example, on behalf of women impacted by, living with and vulnerable to HIV. And a lot of really important work is happening through the U.S. People Living With HIV Caucus, on behalf of all people living with HIV. We're really proud to play a role in both of those efforts. And we're committed to continuing to participate in those kinds of national efforts on behalf of a larger community. It's an important piece of our work, and an important part of our mission.

Olivia Ford: Any additional points before we wrap up?

Vanessa Johnson: I just want to say thank you for doing this. The only other thing I will say is that it keeps women visible. Because lately women have been becoming invisible by virtue of the fact that other folks believe that the emphasis should return to men who have sex with men, or gay men. And on some level, rightfully so. But that means, then, once again, we could possibly be hidden in the shadows.

Olivia Ford: It's our pleasure. Thanks so much to all of you for being part of this conversation. I really cannot express that enough.

This transcript has been edited for clarity.

Read part one of the discussion, in which these leaders talk about how the network came to be, and the strides made in its first five years.

Olivia Ford is the executive editor for and