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