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Inside the Activists' Summit: Empowering Women to Become Leaders in the HIV/AIDS Movement

By Olivia Ford

October 12, 2011

How does one address the serious and ironic lack of input and leadership from women living with or affected by HIV/AIDS in policy making decisions?

Well, the Campaign to End AIDS' (C2EA) Women's Advocacy Group has an idea. In just a few days' time, in Baton Rouge, La., the second annual Women's HIV/AIDS Advocacy and Leadership Summit will take place.

This powerful gathering will bring together women from around the country who are either living with or affected by HIV/AIDS in hopes to empower, educate and encourage more women to step up and demand more leadership roles in this movement, especially around policy making. This idea was born in 2010, and the first summit took place in last fall in Reno, Nev.

But before over 40 women descend on Baton Rouge for this year's gathering, we were able to get perspectives on the origins of the summit, last year's goals and lessons learned,. With us are Sharon DeCuir, prevention program manager at HAART (HIV/AIDS Alliance for Region Two, Inc.), in Baton Rouge, who was instrumental in bringing the summit to that city this year; Marsha Jones, national secretary for C2EA and co-founder and executive director of the Afiya Center in Dallas, Texas, who organized both summits; and Gwen Taylor, executive director of ACCEPT (African-American Community Cultural Education Programs & Trainings), an HIV prevention and support organization in Reno.


Olivia Ford: How did the Women's HIV/AIDS Advocacy and Leadership Summit come about? Out of what need in the community did this event grow?

Marsha Jones: The idea of having a Women's Advocacy and Leadership Summit was birthed from the goals and the mission of C2EA, which is demanding that our leaders exert the political will to stop the epidemic in the U.S. in regards to all people, especially marginalized people. In working with the women's advocacy group of C2EA, and being a woman myself and having an organization focused on HIV-positive women and women at greater risk for HIV/AIDS, we saw that there was not enough leadership and advocacy from the women who needed to be out there the most. This idea came up two years ago in a women's breakout group at C2EA's five-year anniversary, and we decided we'd do a summit. That's how it started: Trying to meet a need for very strong advocacy tools for women living with HIV -- even though all the women who attend the summit are not HIV positive.

We would not have been able to do this without the support of Christine Campbell, vice president for national advocacy and organizing for Housing Works, who has supported both summits in all kinds of ways.

I just started making phone calls and talking to people and using our national working groups to put the word out and make suggestions for where the summit might be needed the most. We wanted to go someplace where there wasn't necessarily a higher HIV prevalence rate, but rather where there was no really clear voice of women, especially women living with HIV. Also we wanted to go to a place where women thought they were invisible. One of the ladies in the working group talked about Reno, Nevada. Nobody ever thought about Reno and people living with HIV!

Olivia Ford: Why do you think Reno is so far from people's minds when it comes to HIV?

Gwen Taylor: We have a low epidemic in Reno, and in Nevada -- we don't compete with the larger cities like New York, L.A., and the states of Florida or North Carolina. We also have a low population base of African Americans in Nevada, and in Washoe County, where Reno is located. In Washoe County, we have 2 percent of the state's population base but we do make up 13 percent of its HIV epidemic. Among those, women are a small percentage. Consequently there is very little advocacy. They really needed to come to Reno to give us a boost!

I think the organizers of the summit were strategically looking at Reno because we have such stigma here, and we don't have the real strong advocacy leg that we need in this part of the country. I think the stigma comes from ignorance, and not wanting to know about HIV/AIDS. We're still very backward here in Nevada. We used to be called the "little Mississippi of the West" and I think we still have some of that mentality, where people don't really want to be bothered by people living with HIV; they're still afraid to touch them. There's still a lot of education and advocacy that needs to be done.

During the summit, the women were able to go to Senator (and Senate Majority Leader) Harry Reid [D-N.V.]'s office and advocate for more HIV awareness, as well as more funding for HIV/AIDS.

Marsha Jones: At the time we were about to get into the throes of the ADAP waiting lists. It was just getting crazy, and we thought it would be important to focus on that issue and bring it to the attention of Senator Reid. That action was part of the summit.

The action worked really well. We had been reaching out to Senator Reid to see if he would sit down and talk with us, or even just send a representative from his office, and we were totally ignored until we got to Reno. I guess the word got out that we were coming, and we were all these women, and we were going to picket around the Federal Building. About an hour before we were getting ready to go we got a call from Senator Reid's office. They were ready to sit down and talk with us. But by then we didn't need him to come to us; we wanted to go to him, because we wanted to be more visible, and we wanted him to take us seriously.

The meeting was successful because the women in Reno were able to speak to the people that represent them, and were able to give voice to what was going on around the ADAP waiting lists. The ADAP waiting lists were what got us in the room, but it opened up an opportunity to speak to issues that went beyond that: housing, access to care, people being out of care. So many concerns of people living with HIV and especially women were on the table, which I think gave Senator Reid's representatives a different view of what was going on in that city.

The point of the summit was not just to go to Reno and work on Reno's issues, but also to bring women in from around the country to share ideas, share challenges, share successes, and then go back and recreate this same thing in their own cities, in their states, in their regions. It was greater than just Reno. Reno just happened to be the best place strategically.

Gwen Taylor: We still have a lot of work to do in Reno. The summit definitely opened our eyes to a lot of issues around advocacy. The women from my organization that participated were energized and inspired. But it's been challenging to follow through with implementing what we learned, because I've just been so busy.

Olivia Ford: This year, the summit's host city is Baton Rouge. and recently the U.S. Centers for Disease Control and Prevention (CDC) ranked the city second in the nation in AIDS rates -- a very different HIV/AIDS landscape from that of Reno. How did the summit come to be in Baton Rouge and why is this location important?

Sharon DeCuir: We responded to a request for proposals that asked the question: Why should your city host the summit? We wrote a synopsis essay that was voted on, and that's how we came to host the summit. I got my executive director and others on board early before we were even selected.

I was involved in the essay-writing part, and I talked about how, unfortunately, what I saw were HIV rates among women at the time rising, and being higher than in other populations, and younger women being more likely to become infected because of their risk behaviors.

We women will take care of ourselves last. We will take care of everybody else but ourselves and let ourselves go undone. Because of the stigma associated with HIV, you don't find a lot of women living with HIV in my community in Baton Rouge that are willing to step up and ask for help, or say "This is a part of my life." They live in constant fear of who's going to know, and what people will probably think about it.

I felt that if we could bring a group of HIV-positive women to the area, in order to get other women involved and show them that it's OK to speak up and speak out, that we'd actually get more women involved in advocacy around their health care and other issues that affect women. Sometimes people follow by examples.

What I hope will come out of the summit is that we will bring forth enough attention to issues facing women at risk for HIV/AIDS in the area. For instance, our programs are constantly being cut. Our state puts no money into our prevention program -- all our prevention efforts are basically CDC funded. I think the government needs to look at other ways to cut some other projects, and put more focus and funds on HIV prevention, testing and counseling instead of constantly taking more money away.

Olivia Ford: How many women are participating this year?

Marsha Jones: Forty-six women, which also includes facilitators. What's interesting is that they're coming in to facilitate but they also participate in the summit.

Sharon DeCuir: Women are coming from all different parts of Louisiana: New Orleans, the Lafayette area, and the Alexandria and Monroe areas. Then we have people from New York, Texas, Washington state, Florida, Georgia, Mississippi, Colorado and Missouri.


Olivia Ford: Marsha, Sharon said before that women take care of everyone before they take care of themselves, which is a barrier to care for them. How will the summit address other barriers to care, such as health disparities and the lack of support for women living with or at risk for HIV/AIDS?

Marsha Jones: We could never ever have a summit that didn't identify the social structures that increase risk for women -- the lack of access to housing, the lack of access to care, substandard education, living in an environment where there's domestic violence and you have no way out. Those are the things that drive risk behavior -- it's that survival component. All those things will be talked about in the contexts of people that are facilitating the groups.

Almost every aspect of the summit is going to address accessing quality, affordable care, substance abuse issues, criminalization of HIV -- perspectives of several different women on that topic. On Saturday we'll have a five-hour workshop about HIV, human rights and reproductive justice. We'll talk about how women need to be involved in HIV research. We're going to look at women and the national HIV/AIDS strategy, health care reform, housing as prevention -- and how you start to advocate around these issues and make it a fairer playing ground for women. That'll be a constant flow of conversation for the entire three or four days.

Olivia Ford: How was organizing for this year's summit different from last year?

Marsha Jones: We were very novel about it last year, very idealistic. A lot of things will be different. I realized that we need to have really concrete goals in place this year -- very concrete outcomes expected from the facilitators. Rather than everyone just coming in and talking about what they do or know best, they'll actually present their panel or group or discussion so that it builds on our two main goals: to develop and support grassroots advocacy with networks that focus on and include significant roles of leadership for women living with HIV/AIDS and their allies; and to create alliances and partnerships that will continue to mobilize around the country toward ending the epidemic. Everything people talk about needs to get us to those goals.

What I also learned from last year is that there needs to be more follow-up from the organizers to make sure the women got it. What happened with Reno should not have happened: I should have followed up more to make sure they were able to move forward, because there was a lot of information given. We've got to do a better job of reaching out, and connecting, and making sure that women will go home and be able to implement whatever they want to.

Overall I was absolutely ecstatic over what happened last year, and I'm equally ecstatic about this year. There'll be more structured conversations this year, and I think women will be better able to get what they need out of the summit.

Olivia Ford: What are you most looking forward to at this year's summit?

Marsha Jones: I get really excited when I see people beginning to take control of their lives. I'm looking forward to women coming in, getting angry enough and excited enough to really start to facilitate change. I'm very disheartened over the fact that, again, as we begin to look at HIV and policies that impact the lives of people living with HIV, everyone's a priority but women, especially black women.

I'm looking for these women to come here, get this info, go back and demand that policy leaders and lawmakers start to listen to women -- and have enough courage to stand up and be heard. I'm hoping that women who never ever disclosed their HIV status before will leave here having that power, and leave here feeling good enough about themselves that they want to be strong, even just in being a woman, to stand up and say "Yes, I'm HIV positive and I'm not going to be put on the back burner anymore."

Sharon DeCuir: I'm excited that we have this opportunity to host the summit and bring so many women together. My biggest thing is to build confidence, and to give women in our area the learning tools that they need to be advocates, whether or not they're HIV positive.

This transcript has been edited for clarity.

Olivia Ford is the community manager for and

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