In 2014, Positive Women’s Network-USA held the first-ever National Leadership Summit for Women Living with HIV, hosting 200 women living with HIV (WLHIV) in Ft. Walton Beach, Florida. Participants received training in leadership skills, media and communications, policy and advocacy, and looking at HIV through a human rights and social justice lens. They also made invaluable and lasting connections with each other–solidarity that has dramatically boosted regional organizing and advocacy capacity.
As the map below illustrates, every state most impacted by the epidemic was represented at the Summit, including every Deep South state. Thanks to the generosity of our sponsors and donors, we were able to set an affordable registration fee of $75, which included accommodations and food throughout the Summit and pre-institutes. This ensured that low-income women, who comprise a majority of WLHIV and who often cannot attend conferences due to the expense, were able to participate in large numbers. As evidenced by the graphic below, 87% of participants reported an annual income of less than $50,000, and 61% reported earning less than $25,000.
Further, the Summit was entirely planned and organized by women living with HIV. 77% of Summit presenters were people living with HIV, and 95% of presenters were women.
Goals of the Summit
- Increase familiarity with key policy and research trends impacting WLHIV at the federal and state levels
- Build skills and capacity for women with HIV to take local, state and regional action to affect those policy trends to promote the human rights and well-being of women living with and vulnerable to HIV in a variety of ways
- Build a culture of supportive and holistic women’s leadership
- Coalesce on a national advocacy agenda
What was the impact of the Summit?
PWN-USA used a slightly modified version of the Learning Value Chain to measure the effectiveness of the 2014 Summit, looking at four key elements:
- Reaction: Satisfaction and plans to take action following the Summit
- Capability: Changes in knowledge, skills and attitudes
- Application: Changes in behavior, activity level or actions taken
- Impact: Favorable contribution to organizational goals and outcomes
Evaluation survey results indicated a very high level of satisfaction with Summit sessions.
The table below represents changes in attitude regarding priority issues and intent to engage in activities as measured by surveys administered at the beginning and end of the Summit.
Besides changes in attitudes and intent to participate, since the 2014 Summit, we have seen:
Leadership in action:
- PWN-USA’s statement (Do You Have to Disclose to be a Leader?) was created as part of a Summit session and posted to the PWN-USA website, encouraging participation by women with HIV across the disclosure spectrum in advocacy and leadership
- Members advanced the discourse, research agenda, and policy and programmatic response addressing the intersections of trauma, violence and HIV
- PWN-USA trained over 300 women living with HIV in leadership skills, via in-person and web-based trainings in 2015
- PWN-USA members created recommendations for the National HIV/AIDS Strategy, elements of which were incorporated in the 2015 NHAS and Federal Action Plan
Community building & advocacy in action:
- Increased membership in all regional chapters
- 4 new formally affiliated regional chapters formed since the 2014 Summit (Georgia, Louisiana, Bay Area and New York)
- PWN-USA launched a community-based participatory research project, training 14 women living with HIV to conduct research on access to care in their communities
- “The Language We Use” workshop about using non-stigmatizing language was held in a skills-building webinar for 250 participants, led by 2014 Summit presenters and PWN-USA members Vickie Lynn and Valerie Wojciechowicz
- Launched a National Day of Action to End Violence Against Women Living with
HIV, with events organized in 7 cities on Oct. 23, 2014, and in 18 cities in 2015
- Launched Stand Up to HIV Stigma, a campaign designed to engage people with HIV and allies in addressing instances of HIV stigma in the media
- PWNers are leading HIV decriminalization campaigns in California, Colorado, Michigan, Ohio, Pennsylvania and Missouri, and PWN-USA is co-organizing the HIV Is Not a Crime II National Training Academy. In Texas, advocates secured a World AIDS Day proclamation from the City of Houston condemning HIV criminalization.
SPEAK UP! 2016 Will Build Upon These Successes
A planning committee of geographically and demographically diverse PWN-USA members has been convened and is planning the 2016 Summit, which will emphasize issues important to transgender women and young women living with HIV. Enthusiasm is already high, with seasoned and new members registering and spreading the word in their networks and across social media.
In addition to providing training, leadership, this will provide a venue for graduates of the PWN-USA Academy, a national training, leadership development and certification program, to showcase their training and facilitation skills.
What Participants Say About the 2014 Summit
“In September 2014, I went to PWN-USA’s first national summit for women living with HIV, where I met over 200 amazing women. I was empowered and encouraged to be educated about what is going on in the HIV community and gain support from PWN-USA. Before leaving the summit, I signed up as a member of PWN-USA. They give me the support and love I need the continue going through life and being an advocate. I plan to create a regional chapter here in Memphis so all women with HIV in my community can have the training and support I receive right here in their hometown. I’m determined to fight on for my state of Tennessee.”
– Dominique Banks, participant in the 2014 SPEAK UP! Summit; went on to help organize the Midsouth HIV Conference in Memphis, TN
“I was invited to speak on the plenary session Building a Trans-Inclusive Sisterhood about the intersections of being transgender and living with HIV. I shared the stage with two other transgender women of color and one cisgender woman, all of whom I love and will be more than happy to work with again. During the plenary session, apparently some very transphobic comments were made…I will say that after the talk, hearts and minds were changed. I spoke as honestly and candidly as I could, and a great number of the women in attendance walked up to me after it was over and apologized for the way they felt about me. Some admitted that their pastors had gotten it wrong in matters concerning transgender women and saw us as human beings.”
– Tiommi Jenae Luckett, participant & presenter in the 2014 SPEAK UP! Summit
“The women attending the Speak Up! Summit know my deepest secret and still accept me. Their acceptance is unconditional, without judgment. They encourage me and understand me. These women are just like me…they are HIV positive and remain strong. We continue as mothers, wives, and friends…all while taking on a new role as advocate. I want to lead other women and give them the same energy, love and enthusiasm I’m feeling.”
– katie06, participant in the 2014 SPEAK UP! Summit
Thank you to the sponsors of SPEAK UP! 2014!
AIDS Healthcare Foundation
Elton John AIDS Foundation
National Minority AIDS Council
Centers for Disease Control and Prevention (CDC)
Flowers Heritage Foundation
AIDS Action Coalition
A Sister’s Gift
IN KIND SPONSORS
Xhico Design Studio
Making it possible for women leaders with HIV to come to the Summit:
AIDS Foundation of Chicago (AFC), Chicago IL
AIDS Healthcare Foundation
Christie’s Place, San Diego, CA
Healthy and Free Tennessee
HIV/AIDS Alliance for Region Two (HAART), Baton Rouge, LA
HIV Prevention Justice Alliance (HIV PJA)
Iris House, New York, NY
Parkland Health and Hospital System, Dallas, TX
Sisterlove, Inc., Atlanta GA
The Well Project
The Women’s Collective, Washington DC