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

October 12, 2011

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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.

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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 TheBody.com and TheBodyPRO.com.

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This article was provided by TheBody.com.
 
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Reader Comments:

Comment by: Brooke Davidoff (Seattle, WA) Fri., Oct. 21, 2011 at 11:59 am EDT
This is awesome, I've been wondering what I need to do to get a job as a social worker with HIV + women.. Pretty please send me any info on this. Helping each other through this is a Mitzvah and a calling. What's the point of living if you're not helping others?
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Comment by: meta (Baton Rouge, LA.) Wed., Oct. 12, 2011 at 2:16 pm EDT
great reading!!! the women that did this interview are an inspiration to all women who are living with HIV/AIDS. thank you for all you do and all you help by what you do.
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