Building an Organized Voice for U.S. Women Living With HIV
December 2, 2013
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.